I thought it a good idea to put into words ~ my battle against the evil that is racing through my body. I’m online and in forums, etc. = less and less. I hope this will help some of you keep track of me..and maybe? not worry too much 
Cancer has invaded me … and I call the bugger ~ IT. *IT’s not Mine, I don’t own IT nor want IT ..nor did I invite IT ..I hate IT!
IT is Endometrial Stromal Sarcoma
the High Grade version, which I have, is now also being called ‘Undifferentiated Uterine Sarcoma’ ..it’s less common than ESS, of course = I always have to be different
IT is in its’ worst, very aggressive form = HighGrade ..and Stage IV. IT is a very rare cancer.. only a few women in a million will know IT. *I’m one a million
I will not beat this cancer, it’s too volatile in this form (High Grade)…basically it’s a monster that won’t ever stop making new lesions and tumors. My best hope is to become and remain stable (no tumor growth/no new recurrence) for as long as possible. Because it is so rare, there is no blueprint for treating it. There is very little known, no standard regimine and that angers me. Like “wtf? is that because we will all die and there are so few of us..that.. Oh Well?” I’m one of em now and I’m stunned that this cancer is so little studied..there have been few clinical trials. I keep reading, thru research = High Grade > most often Fatal. Great..that’s it? The statistics are grim .. probability of survival to 5 years = 0 – 5%. I’ll not be left hopeless! I’m fighting this thing..:)
>The page heirarchy is = most recent entry is at bottom of page = you’ll have to scroll to bottom for recent updates.. sorry!
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January 2008..
it’s just after Christmas and I’m noticing that my left shoulder is very tight, at the top.. so much so that I’m heating up a rice-filled sock and laying it over so to sooth the muscle there. Everytime I need to reach for the faucet.. or to point to something, etc., I have to begin the movement slowly and allow the muscle to relax into it. I assumed I had simply ‘pulled’ it and the muscle was being stubborn by not agreeing to follow the plan. It was annoying but came in short-lived episodes (every few days a week) .. just enough for me to say that it was ‘an ongoing thing’. What I found odd was that this was happening on my left side.. when my right has always been the weaker, problematic side.
April 2008..
Early morning, I’m laying in bed enjoying the last half hour before I need to wake ..sort of dozing. The door swings open as my kitty decides to make his entrance to wake me up.. the light through the door bugs me and, instead of getting up to close the door ~ I remain in bed and swing my pillow (with left arm, of course) to swoosh the door shut.
OUCH! It hurt..a lot! I recall saying “oh no, what did I do?” I heard/felt a *pop* and immediate tightening of the muscles.
I massaged/hot-rice-socked/precussion massager’d/and tried to exercise that shoulder. Much time was spent on Google looking up every bit of info that I could find about rotator cuff tendon injuries and AC Joint Separation. In fact, I was assuming that I’d suffered an AC Joint Separation for the fact that I had a lump atop my shoulder, right over the AC joint… a common symptom with that injury.
I also had a lump pop out high on my chest and when I’d press it, I could feel the twinge from under my arm to my shoulder blade and to the muscle atop my shoulder. With that, I assumed that I’d developed a mean muscle knot due to the shoulder injury.. the pectoral muscle was over-worked and had seized up.
I began to massage that chest lump too.. freakin hurt, let me tell ya! But I was diligent and massaged, excercised, etc. each day, in hopes that everything would sort of calm down.
I also began to wear a sling occasionally.. just to give my shoulder muscles a break from having to hold up my arm.
Mid – May 2008..
Early morning again. I’m lying in bed enjoying the last bit of my time there. I decide to rearrange my pillow..and since my shoulder was feeling better.. I leaned on my left elbow while moving the pillow.
I felt a ‘thunk’ this time and immediately fell off that arm. It felt like something that was 1 ..became 2. If I tell you I was wailing..that would be an understatement! Sound came out of me that I didn’t recognize. I was in such pain that I simply didn’t know what to do..I sat up, finally..and realized I could barely breathe for the muscle spasms and the pain that seemed to be from the fingertips to my back and shoulder and neck to the top of my head. It was everywhere and it was ‘hot’…if that makes sense?
I was pissed that I’d now, probably, worsened my supposed AC injury by completely rupturing the tendons (a Grade III separation, I assumed now = meaning a complete rupture)
Finally, I *cried Uncle!* and made an appointment to see an Orthopedic Nurse Practioner. Appointment date = Friday, May 30.
May 30, 2008..
Typical first time orthopedic exam ~ I am put through a range of motions and tested for strength and degree of range when extending my arm. The test I failed, miserably, was forward extention and resisting her pushing downward on my arm.
I recall saying to her “don’t you tell me I have a rotator cuff tendon tear!”. I wanted to and expected to hear that I had the AC Joint Separation.. which would not, necessarily, require surgery.. instead, rehab would require a course of Physical Therapy.
She suspected AC-joint separation..and sent me for an xray of the shoulder. She also told me that she’d double-check her diagnosis by having the resident Orthopedist look over my xray.
I’m waiting in that little exam room and I hear them discussing my xray outside the door. I overhear ‘AC joint…..’ and am sort of relieved…
The door opens and she returns..and introduces me to Dr Luloff. The doc immediately says, with a dour expression “I don’t like the look of your Xray..AT ALL! I’ll show you why..”
I’m thinking..”sheesh.. what the hell?” He was very intense..I couldn’t fathom why. It’s just a shoulder injury…
He brings up my xray on the computer screen. He points to the collarbone..toward the shoulder and says ” This is where your collarbone should be..there is supposed to be another bone, here, where it connects to your shoulderblade..” (there is supposed to be ???)
Mr Intense continued..
“It’s Gone! The last third of your collarbone and the other bone has shattered, fractured, disintegrated! Gone! .. There is only ONE reason for this and it’s CANCER!”
I couldn’t, first, understand why he was yelling at me.. then that word stuck in my ear..
Cancer cancer cancer cancer.. cancer cancer.. Cancer?
I looked at the xray.. right.. nothing there. My collarbone simply faded away into nothing…
He immediately launches into the docs I need to see.. and that I HAVE TO FIGHT THIS!.. and how he’s seen people, who should not survive this stage ..Survive for years and are still living.. and so on.. and on..
I’m numb.. speechless.. stunned .. the deer in headlights expression ..disbelief.. the “ok, wake me up now, please” disreality wrapped around me.
Wait a minute.. WAIT A MINUTE!! I hurt my shoulder and now you’re showing me missing bones?.. and masses in my lungs? and yeah, that lump on my chest is cancer too??? WHAT?
Before he leaves the room.. he slaps his hand on my shoulder.. yes, the ‘bad’ one .. and he offers his final words of support.
I looked at him and said ..
“Ow” .. and I laughed (believe that?)
well, duh! He just rattled on about how bad this was and then slaps his mitt right into the injury..
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To explain to you what the next hours/days were like is too painful, actually. I was in shock..I had to go home and tell my husband..I had to hear the words come out of my mouth to my disbelieving ears.. to see his face.. overwhelming fear for both of us.. I knew I’d have to tell my family..friends.. the long nights of no sleep and the thoughts..the fear in the dark.. it was just all too awful to go back to, now.
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June 2008..
The weekend was over and I met my doc..the Oncologist, Dr Jaslowski. He had set up a team of three = himself and two oncologist specialists. Dr Klein would be my radiology oncologist.. Dr Tammela would be my gynecological oncologist. I met with all three and then spent another day having CT scan, bone scan, biospy of chest lump, and ultrasound of my leg arteries (my legs and feet were swelling very scarily, very suddenly. It became known, after the echo.. that my uterus was so large it was impeding the arteries…sheesh)
I knew this was the beginning of my life never being ‘normal’ again. The CT scan showed that my uterus was ‘grossly abnormal’. So, the hysterectomy was scheduled (June 18, 2008) and out IT came. Nasty thing was not a uterus anymore.. but a big, ugly tumor. I immediately lost 20 pounds after surgery..and it never came back.. so that thing was a beast, for sure. The biopsy (at the chest lump) proved that the uterus was the source of the cancer and it is, indeed, a very rare form = few women out of one million will get it .. and now I am one of those few:
Endometrial Stromal Sarcoma (now being called ‘Undifferentiated Uterine/Endometrial Sarcoma’) :
The only proposed predisposing factor for uterine sarcomas is prior history of pelvic radiation.
Go figure.. I get this thing? Hell, I always enjoyed being different.. or maybe all those dental xrays, where they lay that lead apron over our belly? .. it was filled with sand?
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A week after the hysterectomy, I began radiation to my shoulder front and back (where a large bump was now growing..rapidly at the top shoulder).. to my chest ‘lump’ and to my hip. I got them to do the hip when they finally believed me that my hip had been hurting for quite some time and my worsening limp convinced Dr Klein to look further..yes, he found that there was cancer there..dammit. *too bad that he had to tell me that I was, now, basically at Death’s Door..as well.
he said : “See who you need to see..travel where you need to. Now. You have little time left.”
sheesh Doc.. that sucked
I’ll just tell you now that, from Day One, I let it be known that I don’t want to be told what my time left.. is. I don’t want to know that because ..in my head it’s a Stop Sign. I’d always have that Stop Sign in the road ahead of me. How can I be positive nor have happy thoughts/happy days when I know that each day brings the Stop Sign nearer?
I like Dr Klein very much! He’s a very caring and warm man..and I think he genuinely cares for me. He simply didn’t know that I want nothing to do with ‘prognosis’ and the Stop Sign. I could tell he was crestfallen to see the cancer at my hip… and I know that he so cares for me, that he thought it best to tell me to get important life-stuff in order. So..I forgive him for freaking me out that day
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Doc Klein amped-up my radiation from there-on.. Dr Jaslowski (my primary oncologist) wanted to get started on chemo as soon as possible. I had some burns but nothing to complain about, really.
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July 07, 2008..
I had a port placed in my chest = for chemo… and what a dream that lil device is! No more stabbing me repeatedly to find a vein (arm to arm..then to the hand..ouch).. no more bruising, discomfort, nor anxiety (for both lab tech and me!). Now CT scan dyes..blood draws..chemo.. everything goes through/comes from the port.. ahhh.. such a relief 
Three days later (Wednesday), I have my first chemo.
Friday, I’m admitted to the hospital for high fever .. 106!!!!
They feared it was infection at my new port..and they’d have to take it out:( .. oh shit
Luckily (?) it was simply my bodys’ reaction to chemo.. *boy, what a reaction
I have to say = I’ve never felt so sick in my life. I was first all body shaking cold and chattering teeth. I put as much clothes on as possible and went to bed. Oh.. yeah.. hubby was out of town. I was on my own.
I woke at approximately 2 a.m. .. and I was a blast furnace of heat. I felt like my feet didn’t hit the ground, once I crawled out of bed. I knew I wanted WATER.. so I made my way to the kitchen.. hot..hot..hot..so Hot.
My head kept floating away……… I couldn’t keep my thoughts straight.. weirdest thing ever.
A primal part of me was scared.. I kept floating away … the same primal part of me knew I needed to keep my head together.. It was so hard to do.. and I was simply so HOT that I have no words for it. Right! I was experiencing delirium. Totally freaky, I tell ya! I couldn’t get my faculties together enough to use the phone to call a neighbor for help.. I just drank water..threw it up..drank again..threw it up again. Finally, I took my temp (once I figured a thermometer was a good idea..and got my head together enough to find it) and saw that number of 106.. took 3 ibuprofen (even though I was told by chemo nurse not to..but I didn’t have any tylenol and can’t take aspirin). I thought I might actually die if I didn’t…or float away into permanent delirium. When I started to feel better and the temp came down to 104, I went to bed. Woke at 10 a.m. .. temp still over 103. Hubby was on his way home and I’d called the Dr = who definitely wanted to see me. Once I got there, he admitted me..and of course? .. the fever soon broke and went on its way. Still, they kept me overnight, much to my protest. *I’d rather feel crappy at home!
The first few chemo treatments were not easy. I had to give my body time to figure out how it wanted to react to the stuff.. I had a lot of trouble with gastrointestinal ailments that also include the mouth and throat.. diarrhea, mouth sores, sore throat, and sore and coated tongue..not pleasant. But at least I didn’t have another bout of high fever ..just little ones, like 100 or so. The fatigue and weakness, then and now, is what I mostly had to deal with..and I dealt with it by crawling into bed = all day! I call it ‘my fatigue day’ now.. and I don’t have to feel the ‘guilts’ for not being productive;)
It wasn’t until early August that I felt a tickle at my arm.. I looked down to find several strands of hair had fallen. I reached up and tugged..and came away from my head with a chunk of hair 
I had thought I was prepared for what came next, but I wasn’t. I stuck my head into the sink and wetted my hair.. and began combing with a fine tooth comb. Crying all the while. Clumps and mounds of hair building up everywhere ~ at the sink bottom, in my hands, and in the comb. Hubby stood beside me and stroked my back the whole time.. while I cried and combed. Yes, it was distressing.. but then it was over and I toweled off and looked into the mirror. Oye.. not so cute anymore. I knew I needed to get it all off.. so my sis in law and brother came with her dog clippers! She was once a dog groomer..and she did a fine job of shaving me down. *woof*
Late August..
After a few rounds of the first chemo (Gemzar and Taxotere) I had a CT scan to compare against the first (from early June).. with hope to see lessening/shrinking/disappearance of tumors.
No such luck. They increased in size by an average of 15%. More new tumors appeared. Not good news at all I now have freakin tumors (three of em!) in my butt muscles. Ever heard of that? Yes, they are, literally, a pain in the ass. My lungs are filled with greater than 50 lesions that continued to grow:( Dr jazz told me that once the growth reached 45% at my lungs, that is when I’d be in deep doo~doo, as for breathing. I did the math..it appeared that measure would be reached by November…at the rate it was going. The good news was that there were no tumors in my pancreas, liver, kidneys, etc.
I honestly didn’t think I’d see snow again..nor Christmas
That day he mentioned another chemo drug.. one that I could not take for more than a prescribed threshold, because it is very toxic to the heart. He felt it was worth a try and so I went for it. I had an echocardiogram to see if my heart was up to it and it was, so the next week I began my first of six courses of Adriamycin. It’s given through two large syringes… not by the typical IV drip. The nice part is that the chemo day is short! Instead of watching yet another bag drip, drip, drip..this is pushed in slowly, by hand, and only takes approximately 1 1/2 hours from start to finish. .. in comparison to 4-5 hours for the previous chemo I’d had. For you who are lucky enough Not to know what chemo’s like = they give a small IV bag first (15 minutes), filled with meds for nausea, allergic reaction, etc. Then comes a drip of saline for at least a half hour. Thereafter comes the good stuff…it may be short (as with the adriamycin) or it may be up to several hours. I know some people would be there for 8 hours getting their treatment
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..it gets better, I promise!
In September I began a blog to keep my family and friends up to date.. in truth, the many, daily phone calls were keeping me tied to the telephone and it became my choice to blog so that I didn’t have to continually talk about it all.
I’ll begin adding a clipped version, now, of my ‘other’ blog here = removing personal stuff. In the long run..(hoping I HAVE a long run ).. it’ll be easier all the way ’round ..*rather than writing two blogs
Entries will always be by date.. again, easiest
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October 12, 2008
*before I start.. hoping I’ve caught you all up to the Good News at my last meeting with Dr Jazz (Jaslowski)= the chemo we’re using now is working! The tumors have shrunk with this chemo, that thing growing out of my chest is barely visible and we’re all feeling very positive.. but for the fact that this drug is very harmful to the heart and it Will do damage. So, after the next dose, I’ll have a MUGA scan and CT scan. If he sees that my heart is being affected, he may add a drug to it to protect my heart – but it may also protect the cancer? What a toss-up! Otherwise, he has another chemo in his itinerary ..if only I could remain on the one we know is working..pfft.
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well, hey there!
Got to tell ya, I had the best chemo ever.. on Oct. 01
This is the first time that I had little after-effects. The fatigue was minimal and other than that? no ill-effects whatsoever, like mouth sores and other bad stuff. Normally, the fatigue would last for 5 days and be very debilitating ..walking a few steps would entirely wear me out. This time.. I was a bit pooped out but I could carry out my day without having to sit down every five minutes
I have another chemo dose on the 22nd.. really hoping it goes so well as this last one has.
I’m feeling so well and am noticing that my lungs feel ‘lighter’…and it doesn’t hurt to take a deep breath. Heck, for a few months it was very hard for me to take a deep breath at all..which was scary. I’d notice that my body would do it on it’s own.. like an involuntary action. It never felt good..and now it’s ok!..so yeah, I’m thinking that’s evidence of the chemo doing it’s thing in there
I’m still keeping the Breathe Right nasal strip people in business I wear one 24 hours a day, except when I go to the grocery, etc. (yeah, I know..real attractive.. but hell, I look like Mr Clean with a bit of baby hair..who cares about the nose?) The fact that I have a deviated septum makes breathing difficult, especially now. It’s like breathing with only one nostril.. I never get enough air. Those little strips are a great invention and just what I need
Other than getting winded by walking up stairs and after exertion, I wouldn’t know I have cancer. I feel great! I sleep well and there aren’t problems with appetite nor with pain. In fact, the pain is less all the time! I may take a percocet once or twice a day and that is only because the ache in my shoulder or hip is annoying me. But, really.. it’s not bad at all. Some days I have no need to take any pain meds and that’s a big improvement over a few months ago when I was using oxycontin or morphine regularly.
I know I’m living in a happy bubble = making believe I’m fine and that none of this is real! Works for me! One day it may/will change but for now it’s all good I like my happy bubble. I’ll occasionally step outside of it and do the reality thing…but it sucks. For example, today I looked at the fall leaves, so pretty this year..and think “I wonder if I’ll see them again, next year?”
Hey, I’ll see it snow again I had wondered, this summer, if I would.
So, that’s it for now. I’ll not be seeing Dr Jazz at this next appt. He’ll be away and I’ll see his assistant, Ruth. Other than joking around (she’s a hoot!), I doubt there will be much to report..
This may become the most boring update-blog..ever! But, then, No news is Good news?!!
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October 21, 2008
oye..
Ended up in the ER for some hours on Sunday.
I thought, at first, I had food poisoning from my Saturday, restaurant lunch with family. Bruce and I were home about a half hour, from the restaurant, when the discomfort began. In another hour I was in severe abdominal pain..followed by nausea. I knew it wasn’t my appendix because of the location (above belly button, below right ribs)
At around midnight, I took 30 mg of morphine and it didn’t touch the pain, whatsoever. I wanted to take more, but didn’t because I simply didn’t know what to do. 18 hours after it began..(what a long, horrible night!..and so tired from the morphine..but couldn’t sleep) I was still experiencing the waves of pain.. from my belly and from my back. Bruce had me call Dr Jazz and he met us at the ER.
Short n sweet = I had an intestinal obstruction. Let me tell ya..it’s not fun. Now, we hope it’s not caused by an adhesion from surgery… because that means future problems of the same sort.
I’m feeling much better..won’t go into details of how and why! Still, there’s an abdominal tenderness present and I’m hoping it’s only because of the intense cramping that may have ‘bruised’ my insides? .. if that’s possible..
Crossing fingers this is a one-time ocurrence..
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October 22, 2008
Ok.. got filled up with my cinnamon-red chemo today
The chemo ward was really full. Every station filled…the place was bustling with activity.
adriamycin
*not saying I’ve given up my happy bubble! I like it there
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While I was waiting to be taken in for chemo, A pretty, young woman (about 27′ish) came in to the waiting room. I saw her port was readied..for chemo.
I’d seen her months before and, now, noticed she was pregnant..and not bald. I had to ask “how is it that you haven’t lost your hair?”. I didn’t want to start out with the pregnancy aspect.. imagining what her fears/stress must be..
She said no one knows why her hair remains.. but they think it may have something to do with her pregnancy.
Then I asked about the baby. Yes, all is well..thank God. She found out she had Hodgkins two weeks after finding out she was pregnant. Man!!.. can you imagine what she must be going through?? Happy and scared to death.. for herself and for her baby (who’s also getting chemo since mom was diagnosed..ugghhh!).. plus she had radiation..though I’m sure well away from her womb.
Her final chemo is New Year’s Eve.. they, then, induce her three weeks later.
It makes me realize I’m lucky, in a way. I’m not a mother.. my concerns are for Bruce and myself *and for, newly deaf, Spanky-kitty. But he IS my 17 yrs+ kid ..y’know . I can’t imagine what this new, young mother must be enduring.
It shows me = it could be worse!
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Nov. 11, I have a MUGA scan of my heart (hoping to find that the Adriamycin/chemo hasn’t damaged it) ..and a chest CT scan
Nov. 12 is a typical blood draw and a consult with results from the CT and MUGA. If all is well with my heart, I assume that Dr Jazz will have me continue with the Adriamycin, same day.
I’ll find out when I get there
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October 31, 2008
Happy Halloween
All is well here.. got through the chemo-fatigue by yesterday **12 hours of sleep, night before, didn’t hurt!.. It’s always a welcome relief to feel ‘normal’ again
My hair is growing in even though I’m taking chemo that causes total alopecia! My eyebrows and eyelashes are coming in (as is my mustache!..damn) ..my scalp is darkening as the new hair appears.. it’s unexpected and exciting
..tho I’ll not be handing candy out to the kiddies tonight.. no need to scare em for real!
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November 13, 2008
Good news 
Yes, we have had further shrinking of tumors = in my lungs and, most notably, at my chest wall (*that big thing that once was growing out of my chest/ribs).
It’s completely flat now and is barely tender.. though, I do know it’s still involved at the bone and with tissue not lumpily visible. The positive news is that it’s lessening at a tremendous rate and that does my head so much good. To see/feel that thing was a constant, ugly reminder.. it was as tender as it was ugly .. and it creeped me out (*remember that scene in ‘Alien’?)
The lesions in my upper lungs are smaller. The lesions elsewhere, in my lungs, are stable 
Disconcerting? There are more than 50 lung lesions, ranging from several mm to near 4.5 cm. I wasn’t surprised by that number = I’d seen what looked like the aftermath of a paintball war in there, when Dr Klein (radiotherapy) showed me my initial CT scan.. frame by frame. There were splots all over those images.. quite overwhelming to see *I knew there were many, but to see the number, now, written..then to count that number off, on my fingers.. well..sheesh! It’s a wonder that I can breathe at all.
The good news is that some are shrinking, slightly.. the others are stable, for the time being. Being stable, at the least, is great news
The MUGA scan (gauging how strong my heart is and whether there is evident damage from chemo/Adriamycin) came out beautifully! My heart is very strong and healthy.. yay! Unfortunately, I am nearing my final dose of the Adriamycin. If I go over a set threshold of treatment with it, there will be heart damage… no escaping that damage. I’ll have at least one more dose after yesterdays’.. then, weeks from now, another MUGA scan and CT to see what we can see. Dr Jazz is very reluctant to go over that threshold, for the fact that he’d rather not have me suffer a failing heart, along with cancer. I agree with him. As it is, I’ll have to cross fingers and toes that the adriamycin doesn’t come back to haunt me months/years from now, would I be lucky enough to pull a few years out of my hat (I surely intend to..rabbit-willing!)
According to the CT report, there is the suggestion of at least 1 peritoneal metastasis in the region of my liver :( The peritoneum is the membrane that lines the abdominal cavity.. as well, it also surrounds each organ. It appears that it’s not in my liver..but damn, that’s too close for my comfort.
December 03, 2008 = The plan is to have another dose of Adriamycin (possibly the final one)
I’ll have another MUGA and CT scan (not scheduled yet, but generally the day before consult & chemo) followed by another chemo on December 23… possibly Adriamycin with a protective drug added to it ..or whatever Dr Jazz feels appropriate – such as a new chemo drug.
Know this! I feel great.. as I hope I will for a very long time! Oh, got myself a flu shot, too.. :)
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December 07, 2008
Had my final dose of Adriamycin on Wed. (Dec. 03)
I’m feeling pretty good, considering! The fatigue is at bay, so far. Might be I’ll cruise through this one without ill-effects
*update.. of course the fatigue ‘got me’..I always say it’s good..then the jinx happens..and the next day and three more after? ughhhhhhhh ..yucko
Otherwise, nothing new to report.. thankfully
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December 23, 2008
We received a great Christmas present today!
Results of the CT scan, performed yesterday, came back = all lesions/tumors (*lungs, especially) are minimally less.. only 1 millimeter. That may not seem like much.. but nothing has grown larger.. they are Stable!
Most importantly = there are no new tumors.. anywhere! That’s a first..yay!
The enormous thing that once grew out from my chest is HUGELY lessened.. amazing success there. First it disappeared from physical view (just by looking at me)..now, inside, it’s just melting away In June it measured 5.8 X 6.5 cm diameter.. now, it’s 4.7 X 2.2 cm (from 2.33 inch X 2.55 inch .. to now just over 1.75 inch X .86 inch)
I’m stable!
This means I can live longer if I can remain at this level of stability. My biggest fear and always cause for such awful anxiety at each CT scan.. is = What will be New? .. Where? ..in kidneys, pancreas, liver, etc? Are the current tumors growing? Sarcoma decides to set up house in weird places, too. For example, I have three tumors in the muscles (gluteus maximus and gluteus medius muscles) ..of my butt! ..it likes to wrap around major blood vessels, etc.. ..the ureters of the kidneys.. around the bladder neck.. and other odd and assorted places. It’s tenacious, aggressive, odd..and in my case? = a pain in the butt .. for real
When that happens, when it goes to someplace very important..like a major organ or whatnot? ..the Battle is ON .. tho, that’s far away, I hope. As it is, I know that my lungs are a worry.. but I can breathe without too much difficulty and that’s what I care about (and that my other organs stay clear) = just let me breathe as I am and I’ll hang in there.
Today, Dr Jazz, Bruce, and I decided our new course. I cannot, safely, take more Adriamycin. My heart scan showed that it’s doing very well, basically unchanged from the previous MUGA scan..fingers crossed that it remains strong and healthy for the foreseeable future. Time will tell on that.
I began a new course of chemo today ~ Carboplatin.
I am expected to experience nausea with this one.. but I’m not concerned. They give me meds for it with each chemo (they are supposed to last for 3-4 days).. as well, I have meds on hand if I begin to feel queasy.
To be honest? I’m not concerned. Throwing up isn’t a big deal..and I know, if I get the meds in at first sign of it, I’ll be ok. I’m not expecting it to happen ~ to get pukey. Hell, mind over matter 
.. right?
*update = I had a moment of major queasy on Christmas Eve. I took a Compazine (for nausea) and stuck my head out the door = COLD ..and said to Self = don’t puke! A minute of deep breathing later? I was fine. That was It! I didn’t puke..go me!
Another plus? Carboplatin doesn’t cause alopecia (hair loss) .. so my puppy-fuzz will continue growing and I’ll not be full-out bald for long! I have a nice growth of hair (1/8 inch?), now, and I can’t keep my hands off my head! It feels so soft and it just feels so good to Feel hair again! ahh.. feels like petting a puppy or kitten
Know this : I feel like a new person today! I’m so happy for a great CT report..I’m lighter than a feather, for the weight of the anxiety being off my shoulders! For too long, this time, I was filled with dread that it wouldn’t be positive..now I can let that go and focus on day to day life without that heaviness of anxiety.. what a relief.
AND! I’m over the moon with all the snow we have! Last summer, I didn’t think I’d see it snow again..and now (yes, My Fault!) .. it’s snowing most everyday ..I couldn’t be Happier!
I’ll enjoy all this winter.. see my birthday, and without a doubt, I’ll celebrate with Bruce ~ our 10th wedding anniversary in June.
I feel almost invincible.. ok, I know.. that’s a bit optimistic!
But.. damn! today was a good day and it’s Christmas..
I hope yours is as happy as ours is
Merry Christmas, all
♥
……………………………….
January 14, 2009
Blood was drawn and the results were ‘normal’.. all good. Still, she was concerned and got Dr jazz to come and take a peek. He pushed around .. I told him when he hit the sore spot (right at the catheter line/overtop my collarbone) and he asked if I’d had a fever..answer = no. .. it wasn’t wise for me to go..darn.. I really was looking forward to it, too. (I wanted everyone to see my new hair!) Therefore, I had to be hospitalized for the administration of (one of two) antibiotics that will take the bug down… and to be continually monitored. This infection, especially in the bloodstream, is very serious. I’m not sure of the connection.. but it gave me tremendous headaches, inmmediately.. and caused a thirst that I could barely quench. .. did I say they are patient? ..caring? they are I have the utmost respect for how good they are at juggling their requirements (paperwork, patients requests, needs, etc..and they Never drop the ball..awesome, they are!)
- Vancomycin IV ball ~ Full and Empty
I’ve done it twice now and will do it twice a day for another week (one week now..initially it was to be two weeks). I drop the full ball into my bra (third boob?) = it takes about two hours to empty. Today I’m doing it at 6 a.m. and p.m. Tomorrow.. 7 a.m. and p.m. Next day 8 a.m and p.m. = to get into a more comfy routine. After this week? I’ll take oral penicillin for another week.
.. that full ball is about the size of a fattened tennis ball (now I have to knock wood..just because!)
ughhh yes! Had my last IV of Vancomycin this am.. 6 a.m. sharp! ..then 2 hours later, the last flush with saline and my last syringe of Heparin..and I’m done IV’ing myself Really, it was sort of cool to take of myself this week.. being proactive is empowering..and annoying
You know what I was waiting most, for? To get that port-access removed and the sterile (plastic bubble) dressing taken off. The ITCH, underneath, was making me crazy.
Of course, I won’t miss having to IV myself..12 hours on the clock.. Not that it was hard! it was just inconvenient if I wanted to go to sleep before 8 p.m ( the syringes of saline and Heparin, 2 hrs after 6, to finish it all up).
The port-access was removed by the chemo nurse, today, and the relief was so niiiiice .. my skin breathed a sigh..and the itch went it’s way = gone.
Dr Jazz has put me on two more weeks of antibiotics = but by mouth..4 times a day.
After we had our consult with him, we went back to the chemo ‘ward’.. and my port needed to be accessed again. Usually, this is no big deal =they make all sterile and then poke the needle in..and so on. It’s really not a big deal…I’m used to it.
Today? OMG.. when she poked that needle in? I about squeezed my eyes shut, tight enough to = blind myself. HURT?? Yowch!..sheesh.. what the hell? We’re hoping that a new infection isn’t brewing at the skin level there.. how could it, with all the antibiotics? ..but man, that thing stung like a slow gunshot.
All cautions are made..I know what to watch for.. and I got my week-late dose of Carboplatin. Plus Zometa for my bones.
We’ll do another round of Carboplatin in three weeks..then CT scan….and cross fingers n toes that the scan shows Good News (i.e. .. the chemo is my Good Friend and hates my cancer?)
I feel Good! .. but for the last few days = so tired and wiped out. I fear the worst (no chemo for near a month..and does it even work?..am I flying by the seat of my pants?) but looked for the Doc and the nurses to tell me that it’s just the aftermath of an infection and the administration of some heavy duty antibiotics.. Considering the chemo? I won’t know if I’m feeling better, for at least a week..but I’m hopeful it’s just an accumulation of factors (for now)..and that’s That!
Now.. some thanks are in order!
Diane! that card sits at my kitchen island and I open it whenever I need a lil boost! The audio is crystal clear..hope it lasts!!
..made me grin from ear to ear when I opened it ..and pole dance> hmm.. with an IV pole.. well..it has WHEELS, dear! Pllbbbtt! ..owwch
It was a Good B-Day..sluggish..but I got there!! ..funniest thing? The NUMBER barely annoys me..or puts me off! This is a first..
I’m 52! go me!
…………………
Had chemo yesterday and a very long (1/2 hour) meeting with Dr Jazz. Normally, he rushes through the consult .. I know he’s a busy man with a lot of patients to see, but too often those consults with him seem like a moment. Since this cancer thing is My Life now, I wish a consult was more like we see on TV shows, ie. = a nice office setting and lots of time and information.. without feeling the need to rush. I do know that he keeps meticulous notes of each consult and comes in totally brushed up on my case. Yesterday, I think he sensed that I needed time.
I spoke to him about the incessant anxiety I’m having lately..and the mini panic attacks. I will wake from sleep with my heart racing, heart palpitations, and a sense of doom. Some nights I’ll lay awake for hours..or I’ll bite the bullet and take a Xanax. At the least I know that pill will calm me and also allow me to go back to sleep.
The reason for the anxiety is simply = fear. I have been on this chemo since Christmas and won’t know until after an early March CT scan, if it’s helping. The three week wait will be very long for me but at least it’s approaching. Not that it will make a difference to know Now versus Then. Whatever happens, we move on from there
We spoke of the difficulty of treating sarcoma (resistant to chemo, etc.) and he’s going to consult with a sarcoma specialist in Madison about any new treatment possibilities. I may be asked to travel to see him, as well.
He reminded me to Live.. not dwell on what will happen down the road. I told him that I’ve not been like this, for the most part. This anxiety/worry/fear thing is rather new..and it’s private and in the dark, literally.. (but for when I discuss it with Bruce). I refused the use of anti-depressants he offered because this is not a long-standing concern…as well, I don’t think it will be long-lasting. It’s not pleasant and I’ll just have to buck up and get past it. I understand that fear, when you have cancer, is to be expected ..but I don’t want it to take the place of living Positively.
So! There it is.. off my chest, Ken!
To wrap this up.. I feel fine. A very good sign is that the large tumor that grew out from my chest is still visibly flat. I keep dreaming that it comes back! But it’s just a dream. Both Dr Jazz and I agree that it’s failure to return is a hopeful sign the chemo may be working. If it was growing? ..uhoh. Another major concern is the tumor that was found, growing in the Mediastinum ~ the area between the lungs, containing the heart and its large veins and arteries, the trachea, the esophagus, etc. We’ve got to get rid of that nasty thing, it’s not in a place I want to deal with!
So, good, positive thoughts for my CT scan on March 03, ok?!! Now, I’ll have to get ME to do the same
I’m feeling better.. lighter.. much less anxious ..what a relief
Sleeping like a rock this last week, but then chemo does make for a week of deep sleep (I managed to pack in 16 hours of sleep one day! .. a four hour ‘nap’ and 12 more overnight)
I’m still dreaming that the lump on my chest grows back..the twist is that now I tell myself, in the dream: “This is real. This isn’t a dream. It’s back.” ..I can see it and feel it… they’re really awful dreams! Thankfully, I can wake from them..(if only I could wake from the day to day one)
What realization finally came to me this week, is..
It will always be like this. This will never go away. It’s not worth the stress and the fear of the unknown before the rest of my life happens.. so let’s just accept it and move on .. take one day at a time .. and live in the moment again
I think I moved through one of the stages of grief.. #4 ..and am hopefully inching closer to Acceptance.
The stages are:
- Denial:
- Example – “I feel fine.”; “This can’t be happening, not to me!”
- Anger:
- Example – “Why me? It’s not fair!” “How can this happen, I hate this world!”
- Bargaining:
- Example – “Just let me live to see my children graduate.”; “I’ll do anything, can’t you stretch it out? A few more years.” I will give my life savings if…”‘
- Depression:
- Example – “I’m so sad, why bother with anything?”; “I’m going to die . . . What’s the point?”
- Acceptance:
- Example – “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”
..hope I can avoid that Anger one
I’m past the chemo effects .. am well-slept and feel so much more like ‘myself’ .. just wanted you all to know..
I’m back
hi.. just a quickie to let you know that my appt. to see Dr Jazz/get CT scan results/possible chemo? isn’t until 12:30
I’m stressed but trying to keep my mind clear and positive till that door opens and he walks in with results
I may have chemo? not sure..but I hope so
If so, it’ll be a long day. We’d probably be there till late day. If that happens, I may not have the brain-cell power to update you as to what the news is until tomorrow morning?
just so you know
……………………..
Deep Sighs of Relief
I remain Stable! Nothing has increased in size. There are No new tumors..not a one. The existing buggers are basically unchanged.. maybe here and there, just a millimeter less. Less is good
I wanted to run and tell everyone I met! I did announce the good news when I walked back into the reception area..and it is obvious that those girls enjoy hearing good news once in awhile ~ their faces were as lit up as mine
There was more reason for celebration: I turned around and there was the girl I’d told you about in October ~ she learned she had Hodgkins Lymphoma two weeks after finding she was pregnant. Today, there she was with her new baby girl! The baby is healthy, cute as a button, and came four days after Mom’s final chemo at New Years Eve. She decided not to wait for Mom to be induced, as was the plan. She will be getting more radiation but it appears the worst is behind her, hopefully.
It was just great to see her so happy ..in turn, she was thrilled to see me with hair! I never saw so many hugs in a waiting room! It was a good day!
Yes, I had chemo..cheerfully, I nearly skipped to the chair ;) There was another couple, only, in the chemo area and so we were able to chat..and the time flew. Normally, there are full chairs all-around and so there isn’t a good way to chat without disturbing those who would like to sleep or read, etc.
I’ll have two more rounds of this chemo, ending on April 15. Then another CT scan to see if all remains stable. If so, I’ll then be on what is called ‘Watchful Waiting’.. with CT scans every 3 months or so. Seems like a lot of radiation, I know (6 scans to date). But, in my situation..I accept the risk.
I will continue to take Megace, daily, for the long term. Megace is a progestin that interferes with the stimulation of cell growth in estrogen dependent tumor cells.
So! I woke with a smile this morning, after sleeping through the night :) I can relax and go on living in my happy bubble..what a relief!!
before you begin reading.. let me remind you that I’m running at a speed less than three hours of sleep = sooo.. I tend to be redundant.. and maybe?..most of the info will make sense but to me…for now! I’ll edit it once I am clear-headed..ohhh..maybe a week from now? Nonetheless..you’ll get the drift… I hope
I belong to an online support group of women who have both Low Grade (Endometrial Stromal Sarcoma) and High Grade (Undifferentiated Uterine Sarcoma) <<what I have. Always having to be different = I’m amongst the minority, again = High Grade is way less common than Low. Low grade ESS can be viewed as a chronic condition = one woman has had numerous surgeries (several to her lungs but she’s had it since 1981)..she’s still kicking. I see longstanding members talk about their experience with Low Grade..and new members come in with Low Grade and I’m so envious!.. I always wonder if they realize how lucky they are..
Over the months I have been with them, I have learned much and want to pass along what may be important to my sisters..your daughters..and Their daughters
>As far as the group goes ..there is no familial connection to this sarcoma =no grandmothers, aunts, sisters, mothers had it
>Many of these women are the only one in their family with cancer of any sort.. no grandparents, aunts/uncles, etc. have ever had cancer. Amazing, really.
>What many of us have in common is a history of uterine fibroids.. in fact, most had hysterectomies for fibroids = only to find, afterward, that it was cancerous. I think I am the only one in the group who had fibroids but never had symptoms, such as: Bleeding..Pain..Bloating..Back Pain. I was lucky to have only the one surgery to have a total hysterectomy, pelvic wash, etc..because they saw the CT scan and the abnormal uterus = and they’d taken a biopsy of the lump at my chest = which contained stromal cells from the uterus. Many women have a hysterectomy..but the ovaries are left.. and then the diagnosis is made..and they have to have a second surgery to take the cervix, ovaries, and lymph nodes…not good
>Pap smears will not detect this cancer.. even a biopsy can miss it.. sonograms will show a mass= but they never suspect cancer..just that you have fibroids and most likely will need a hysterectomy. The thing is = this is a rare cancer..so they know little of it and don’t assume it is=what it is.
At age 38, I was well-versed by my OBGYN, about my large uterus and the fibroid trouble. She advised me = if I could hang on till menopause (average age 52), the fibroids would shrink without the estrogen supply..or I’d have to have the hysterectomy. Lucky me (or so I thought!)..I had early menopause (all done by age 45) and figured I dodged that bullet. *ever wish you could go back and change your (so-called) luck?
..but I’d not ever have known what a big difference that would have made..now, would I? I’ve decided and have learned = I can stop blaming myself for this turn in my life. I’m just one of a very few who happen to get this thing called sarcoma..and they have no answers as to WHY it happens.
>Every woman, that I’ve heard her story of this cancer = had bleeding, pain..
>I had no symptoms..talk about blissfully unaware? Why didn’t I have the typical symptoms? I have no clue..even Dr Jazz can’t wrap his head around it. He cocks an eye and asks if, maybe? ..my shoulder pain masked uterine pain? Ok..I’ll let him off the hook..he’s a male.. If he were female, he’d know that any uterine discomfort is not fun..and not something we can ever overlook or ignore = especially if we’re bleeding! I had nothing doc..no clue.
hi everyone .. just checkin in to let you know I’m doing well ..feeling A-ok.
..well, mostly
I see Dr Jazz next week, before chemo.. and I know we’ll be discussing another CT scan and what may be in his plans for my future treatment, if any. I’m going to bring up the fact that I’m having more pain in my left elbow.
At a meeting some months ago, I mentioned to him that the inner side of my elbow, right at the joint, hurts to the touch. It’s not the bone, it appears to be the ligament/tendon. He brushed it off as ’probably arthritis’. I wanted to say “Doc, do I need to remind you that I have sarcoma?”.. but I let it go after telling him that it had been tender to the touch for months.
I don’t think I have arthritis. I can push with and twist/turn that elbow, carry weight without any discomfort. It’s never stiff or creaky but if I lay it on the bedcovers at a lumpy spot or on a table, etc. at that area of my elbow..or roll up my sleeve? Owww. As far as I know – arthritis doesn’t hurt to the touch, only..right? Nor is it a constant ?
Now? ..it’s beginning to ache, as well, and I’m worried that it’s not good. My fear is: what happens if it comes apart = like my collarbone/shoulder did? Just an hour ago I took an oxycodone for the ache and it’s as if I took a sugar pill .. no effect. So, when I finish this, I’ll take another and go to bed .. and most likely with a smile on my face 
A CT scan doesn’t show that joint nor any portion of my arm but for the shoulder. When the procedure is happening, we are instructed to put our arms over our head…not an easy thing for me, btw.
A PET scan works like a CT scan and a bone scan, combined. It covers the entire body. As far as I know, they can identify cancer vs an arthritic area. A bone scan lights up both cancer and arthritic lesions. The PET scan uses a radioactive agent and glucose to show what cells are eating it up fast = the bad guys. I think it may rule out arthritis? I’ve read so much about arthritis, sarcoma, PET scans and bone/CT scans that my head is sort of boggled.
My hope is that Dr Jazz will take me seriously and consider the PET scan. I’d rather know what’s up, for sure, in that elbow. If it is what I suspect, then I’d hope that we’d radiate it and save the use of my arm.
There’s also a weak, tender area in the side of my right mid-thigh. It, too, has been there for a long time and is also a concern. I fear falling and some horrible fracture.. though, if it is another tumor, it may only be in the muscle. That wouldn’t be much more a concern to me than the butt-muscle tumors are. A pain, yes.. but just that.
These concerns coincide with what tomorrow is: it is a year tomorrow that I first ‘hurt’ my shoulder and heard the first *pop*… thinking I’d either torn or ruptured a tendon.
How I wish that was what I’d done
Otherwise, really, I feel great .. I’ll report here next week (Wed) about my meeting with Dr Jazz.
Happy Easter!
ok.. deep breath, rae
Don’t worry! I’m ok.. all is good with me.. as far as we know
..but I am a bit shaken up.. (hell, I’m very shaken)
I’ll get right to Why : a fellow UUS/Stage IV blogger died last night
..and I’m feeling that I have this tremendous LUCK on my side..for some reason.
No! I’m not about to question why I’m feeling well, doing well, nor will I change my mind about intending to remain so..
Her name is Heather and she was diagnosed in December 2008.. and now, she’s gone.
Bear in mind, that I was home from chemo just a few minutes. Home from seeing so many others in a terrible struggle for their health and life. It’s a bit hard to be there and such a relief to come home..back to normalcy. Once we arrived home, I checked email and then her blog. I’d been noticing that she’d been long-between entries lately.. and I was a bit concerned.
Today, this is what I found
You don’t know her, but when you have some time, read her blog.
I’ll miss her
………………..
As for me = Doc, Bruce and I discussed the way things are ..we discussed my elbow..and What Comes Next.
I may have had my final chemo for some time?
*cross fingers all goes with the plan.. meaning = remain Stable, without treatment, for as long as possible.
I’m getting ahead of myself, of course.. *I’m just tiring of the routine of the last 10 months ..and the effects! To think about six months without the chemo, etc? Oh..heaven.
Even tho the chemo has extended my life.. I’m so ready for a break! Plus? I need a ‘shaping’ haircut..maybe a bit of pizzazz (ahem! ..color!) ..heck, just Normal ‘girl’ stuff!
I’ll have a CT scan April 27. I’ll also have an xray of my elbow.. *yes, Betty..he agreed the xray would suffice (rather than PET scan).
If I remain stable (Nothing New/Nothing Grew), I’ll go off chemo..and wait… and simply, Live
Reality IS what it is. I will get new tumors..or old ones will take new life.. it’s just a fact.
I have to hope that it won’t happen quickly
I’ve been so Lucky.. thankfully
I had both a CT scan, on Monday, and several xray views of my left elbow
Today Bruce and I saw Dr Jazz for a consult and…
More good news
I remain Stable!
Never in my life did I fully understand what Relief Is. I know, now And? It means I may finally get some sleep tonight! *stop = thinking, thinking..thinking!
There are no new tumors (elbow = all clear) .. a couple of the larger ones in my lungs increased by 1millimeter..as well, others decreased by the same measure.
Horse, apiece? *yeah, I recall my old dice-game-in-the-bar-talk!
Ok..this is the Plan:
- I am off chemo *yay! No more feeling crappy for a week..every three weeks. But also a bit of scary = since it means we are doing Nothing.. but you just watch me conquer this damn sarcoma on my own Call me Dotstroyer, Invincible Cancer Killer!
- I’ll go to the center in a month for a port-flush and a chest xray..just to get a quick look-see ..hoping nothing flares up quickly
- If all is good with the xray, I’ll have a port flush every three months as well as a CT scan (three months from today).. consider it maintenance and a better look than an xray.. this will be ongoing, as long as nothing BAD (grr, boo, hisss) pops up beforehand
- I have a referral, courtesy of Dr Jazz, to see a Sarcoma Specialist at UW Madison..get this.. next week! We assumed it would be a month wait, at least. There, we’ll hope to find out about a new treatment.. maybe a clinical trial. At the least? We hope to find that we are on the right course.
All in all, I’m overjoyed. Look at me..living!
……………
hi
I was so excited yesterday that I forgot to add a few notes:
- I’ll be seeing the sarcoma specialist on Tues, May 5th. It’s a late day appointment and considering travel time.. I’ll not report here until the next day.
- The elbow thing = I was so relieved to find it wasn’t related to this cancer that I didn’t ask what it could be..why it hurts. Previously, he’d said it may be arthritis..another time he said it may be tendonitis. To be honest = I don’t care what it is..as long as it’s not going to come apart due to cancer in there. So, I’ll live with it and not fret..the release from fear is better news than any other. It only hurts when I touch it there.. no big deal, rae!
- In November, a CT scan showed a new lesion in the peritonium..in the vicinity of my liver. The peritonium is the membrane that lines our abdominal cavity. It also surrounds each organ, etc.
Well.. it’s not been mentioned in the scans that followed..maybe three CT scans since it was found? Anyway and again, in my excitement over my good report and discussion about what we do from here on, I totally forgot to ask about it. I will ask the specialist next week ..he’ll have all my scans, records, etc. My hope is, since it’s not mentioned since?, is that it’s Gone! Would that be good news or what?!!
- I may not have explained very well…my future treatment plan. I’ll have a chest xray next month. The CT scans will be scheduled from yesterday’s date = to be a regular 3 month check. Since I’ll be off chemo, I think Dr Jazz wants to do the chest xray in a month to make sure nothing changes rapidly in my lungs. Insurance that we’ve made the right decision to take a break from chemo, I assume.
He told me near a year ago, that he intended to slow this cancer…and he assured me that we’d celebrate our 10th wedding anniversary (June ’09).. he did good, huh!! I told him, yesterday, that Dr Klein (radiology oncologist) informed me in early July, 08.. that I had little time left. I said that I should drop him a note
..still here, Doc!
No doubt, waiting for CT scan results is scary. I’ll have to learn to live in this new way. No chemo.. scans every three months.. and not let the anxiety overcome me. It’s not easy..I wish it were. I need to trust that, if I feel good..I’m ok
ok, everybody .. hold on to your horses!
This may get a bit difficult to understand or follow, so I’ll try to explain as simply as possible.
First let me remind you that there are two grades of Endometrial Stromal Sarcoma (ESS) = LowGrade (LG) and High Grade (HG). I was diagnosed with HG.
LG is very slow growing..recurrences take a longer time to happen. HG is aggressive and fast .. recurrences are expected and without much time between.
LG is not responsive to chemo but is treated by surgery and hormones to block or prevent estrogens.
HG can respond to chemo..as well as the hormonal treatments.. but the prognosis is very poor..especially for Stage IV.
……………….
I saw Dr Howard Bailey at UW Madison Cancer Clinics, yesterday…. mostly hoping to find about new research and/or medications or treatment for my situation.
I came away with news I never expected to hear = I may have both HG and LG
He said I was not misdiagnosed..I definitely had HG at my uterus, tumor at my chest and shoulder..and in my bones. That is confirmed by the biopsies and other tests they use.. and for how it acted, which was aggressive and fast.
But.. he sees that my lungs are acting like LG..and suspects that it may be why, with chemo, we haven’t seen shrinkage nor disappearance of tumors since Decembers’ scan. It may never have had any effect?…since I began last July.
Recall that the first chemo combo failed ( August) …tumors in my lungs had grown by 15%.. new tumors appeared. It was a very scary time.
Dr Jazz then had me begin Megace and we began a new chemo (Adriamycin).
Megace needs approximately two months in the system in order for it to have benefit.
I had a CT scan in December, after finishing the 6 rounds of Adriamycin. It was the first time there was no recurrence and the lung mets hadn’t grown nor shrunk (but minimally). It was the first time I was declared Stable. This stability has continued, thankfully! But..it tells Dr Bailey that it’s acting like LG.
He thinks it is the Megace, which had had time to do it’s job.. not the chemo. The radiation alone (June/early July), he believes, took the chest and shoulder tumors down. The radiation, too, stopped the bones from further evaporating.
Now, he’s kept all my records, including the CT scans, reports, and slides. He’ll be having his pathology dept. looking at them..maybe others. Hopefully, they’ll determine what exactly is happening. That info will be given to Dr Jazz. I’ll probably find out the verdict on the diagnosis when I see him later this month.
If I have both..it raises a lot of questions. To begin with :
- do I have both LG and HG cells circulating in my blood..looking for a new home? ..or can we hope that the chemo may have, at least, killed off circulating HG cells?
- how do we treat a recurrence?
- will each recurrence need a biopsy? .. or do we treat it as LG unless it grows aggressively?
Of course..it can be good and/or bad news if I have two sarcomas? One type can be managed and many women can live with it for years, possibly for decades. The other one is not so generous.
I’m way ahead of myself, per usual. It really sent me spinning.. first I was happy and astonished. Then, with some time to sink in, the questions started popping up. I won’t know until his people look everything over and report to Dr Bailey..then he’ll share it with Dr Jazz.
I’m telling you this now because I told you I’d be seeing him this week and I’d report back.. so that’s what I know.
There was other info, but nothing like the above.
……………….
I met with Dr Jazz today and we discussed my meeting with Dr Bailey (UWMadison)..what his pathologist opinion is ..and Dr Jazz discussion with Dr Bailey about my future treatment, etc.
What is agreed upon, by everyone involved, is that I have a High Grade Uterine Sarcoma.
What isn’t confirmed is whether it’s UUS ~ Undifferentiated Uterine Sarcoma (what I was originally diagnosed with) .. or LMS ~ Leiomyosarcoma.
We probably won’t know what is what until I recur..and if a biopsy is able to be taken. If I had to side with one or the other = I’d probably have to go with Dr Bailey’s pathologist. They see more sarcoma, by population and by having a sarcoma specialist, than we do here..
His pathologist believes I have LMS.
The positive news is that both are pretty much treated the same (as far as I know..now)..
..in fact, there are more options for chemo treatments for LMS. There is also more research with LMS. There are experiments happening with a certain chemo and with vascular agents (oral pills) ..both are looking promising… but none are approved by the FDA ..so insurance will not cover. One of the new vascular agents cost is $5,000 per month.. oy
Dr Jazz said that if we needed to use any of the new treatments, they’d write letters and hope the insurance would bend a bit.
For now, we change nothing, as for my treatment… I’ll continue taking the Megace.
A chest xray showed that my lungs appear unchanged.. so I remain Stable I will have a full CT in August.
I have questions and need to do a lot of research to educate myself a bit more about LMS .. I simply don’t know very much..so may have to correct myself, here to you, a few times *sigh
.. frustration level = very high! I cannot bear not knowing what I have, for certain.
I feel so beat down
Since finding about the conflicting diagnosis.. I took it into my own hands to ask that Dr Jazz refer my slides to Memorial Sloan-Kettering Cancer Center in NYC for a pathology consultation. They see more unusual tumors and sarcomas than any other cancer center (at least, that’s what I am told by those with unusual cancers).
He just called me and he told me that I may never know, definitively, what I have. He spoke of people with cancer cells that mimic other cancers.. so neither can be ruled out nor defined .. (mine?)
He is not positive about a third opinion.. “You have a HG Uterine Sarcoma/Unidentifed” ..that is what we’ll always know, for sure
I can’t bear this.. adrift .. so alone
..I don’t expect any one of you to understand..but if you might think it over, I appreciate that you’ve tried
i just want to curl up and cry..
sucks
I’llk explain more when I can get my thoughts lined up.. I’m whirling now.. angry, frustrated..scared
Confused
Dr Jazz called me and said that he’d talked with another doctor..it was best that I get a clear diagnosis, etc.
..and the slides are on their way to another pathology consult at Memorial Sloan-Kettering in NYC (major sarcoma center)
I may know the outcome by next week.. at the soonest.
Other than simply wanting to know what I have, I have other reasons for needing something definitive. One reason is, would there be a new treatment or clinical trial, I wouldn’t be accepted if we can’t identify the uterine sarcoma.
There’s no guarantee that I’ll get a clear answer, but this is the best I can hope for, for now. Much better than just letting it as it is.
Dr Jazz called earlier with the pathologist opinion from Memorial Sloan-Kettering
It is agreed that I have High Grade Leiomyosarcoma (LMS)
So far, with some of the reading I’ve done (starting here)..I’m not sure how to feel. I’m not finding much good news, that’s for sure. I do know that there are new drugs being tried.. that may be good news for me.
What I wish I could figure out is : how does it differ from the other (ESS)? Maybe it doesn’t differ all that much since the treatment options are the same and limited.
While waiting for the pathology, I’ve found a few things about my experiences that seemed more of an LMS-thing. Like the tumors that grew from my chest and shoulder..and the tumors in my butt-muscles. I am a member of an online support group for ESS and not one woman there ever mentioned tumors growing in those sort of places. So, I wondered why I was different… (and very thankful that it’s not made any trouble in my abdomen, yet, as most of the HG ladies there have had).
In reading about LMS and how people are diagnosed, they may have a lump (tumor) growing from a muscle, as I had, and that is how it’s discovered. In my case, it had metastisized there and beyond. Since it originated in my uterus, I’m classified as High Grade Uterine LMS.. yet this can strike men and women..it’s not only a uterine sarcoma.
..I’m blubbering..
The prognosis still sucks, btw.
August 10, I’m scheduled for a CT scan and will get the results August 12 .. feeling well so don’t worry.
A week from today I will have the first ct scan since April .. having a bit of scanxiety but not too bad ..yet.
It’s funny how worry, fear, stress, anxiety, can affect us and we may not realize we are stressed until later? I try very hard not to stress..not to focus on the negatives and all that. Then..bam.. last week I have four or five days of constant heart palpitations and racing heart..jitters and shakes. The palpitations, alone, cause more anxiety…round and round it goes.
I have mitral valve prolapse and there is a syndrome associated with it..causing the above symptoms with a few others, such as sleeplessness. Who can sleep when your heart is flopping around and skipping or adding beats all night? Xanax helped a LOT..but I also stopped tea and Mountain Dew and doubled my dosage of potassium every day. I’m finally back to normal .. what a relief not to feel that guy playing drums in my chest!
In preparation to see Dr Jazz on the 12th, I’ve gotten a form from the drug company that makes Sorafenib = a promising new drug that some are taking for soft-tissue sarcomas. It costs a lot ($5000 month) and if all works well from the Dr’s request for approval to the insurance denial, I may be able to get the drug at a reduced cost or possibly Free from the drug company. There is no guarantee it will help..the odds aren’t great…but I’d sure like to give it a shot.
I’m also bringing along a list of Sarcoma Specialists from around the country who are willing to work with a patients’ local oncologist = avoiding travel. Bruce and I agree that we’d both feel more peace of mind if we’d know that Dr Jazz will have consultations with one who knows as much as possible about this rare disease.
Btw.. LMS affects 4 out of one million people. I’m one of those lucky people ..maybe Vegas should be in my future
Also.. there’s evidence that it does arise from uterine fibroids (when uterine is the primary tumor, of course)… again, I recall an earlier ob/gyn telling me that fibroids “..very rarely become cancerous.. …don’t worry about it”. That ‘fact’ (that the fibroid became cancerous) is not believed to be true with ESS. Why not? .. I don’t know.
The positive news is that LMS is easier to find information about. ESS (especially HG Stage IV) was frustrating to research…well, there is simply very little info out there. There was nothing new in treatment/drugs, etc. LMS is researched Much more and has ongoing clinical trials, etc. This gives a bit more hope to me than when I was an ESS’r
So.. this is what’s up! I’ll update here next week.. possibly Wednesday ( especially if the news is good!) after I see Jazz about the scan results
Cross fingers for me that I remain Stable!!
ok.. changed my mind!
I was hopeful about that expensive drug = Sorafenib.
Not so much anymore
According to a group of fellow people with LMS, it’s not been a success with UterineLMS (ULMS).
I’d have to jump through some hoops to get it, first of all.. second?.. it causes horrible side effects that most cannot endure
It causes blistering, inflammation, pain, and peeling of the feet, palms and fingers.. rash like chicken pox on trunk and face and scalp..sore tongue and mouth sores..flushing and itchiness..pain… overall, it causes Suffering.
No thanks..I’ll take a pass
Something that most of you don’t know is that I have a form of psoriasis (hereditary, called Palmo Plantar Psoriasis = PPS) that really flared when it first appeared about 3 years ago. The soles of my feet were raw and blistered…very gross. Walking, wearing shoes was nearly impossible. I had to pad my feet and lather on steroid ointments and other creams.. I thought I’d end up on a scooter..oye. It only affected one hand. *here’s a picture of what happens.. tho, thankfully, mine wasn’t as bad as this.. Close tho! it was at the arch of my soles approaching the balls and heels of my feet..about the size of my palm ..going over to the sides of my feet to my heels and anklebone… and it was at the heel of my palm..and it kept creeping..creeping further .. awful!! It didn’t reach my toes and topside of foot, as shown for the poor girl in the image
Thankfully, a dermatologist was able to get me into remission with a couple of drugs = experimental and they worked!! Also, chemo helps.. for the fact that it targets fast-growing cells.
I know how bad raw feet are and I fear the effects of this drug.. it could flare the PPS, as well..
Honestly, I’d rather have a decent quality of life for as long as possible ..rather than take a drug that causes such chaos without a quarantee that it would attack the tumors
..and that’s how I feel about that
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How I wish you all could have seen the expression on Dr Jazz’ face today.
It was elation and relief .. with a happy smile
I remain Stable!! God! I could have laid on the floor and kicked my feet into the air, ala ‘Animal House toga party’.. ..but I didn’t, heh
In fact, there’s actually been improvement! Tumors have shrunk just a bit..but consider I’ve been off chemo since mid April..so that was unexpected and welcome news. He attributes that improvement to lasting effects of the chemo and to the Megace I take each day.
I might attribute it to my Happy Bubble – it works
Consider this = a year ago was the lowest of the low (as far as treatment). My first chemo rounds failed..we had growth and more tumors appeared. Ever since, we’ve had improvement with Stability gained by December. There have been no new tumors for a year!! Stability for so long..wow.. Dr Jazz is all puffed up and so are Bruce and I!
What a good day
So, no worries if you don’t see anything here for awhile. No news is ….
I won’t be seeing Jazz until November, after the next CT scan. Gahh, hate the anxiety of those things! Today’s results make up for that anxiety tho.
yes..good night sleep tonight! ahhh
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hey all ..I have a CT scan on Tues, Nov. 17..
I’ll see Doc on Friday for results and will report here that day or maybe Sat. 21
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*deep cleansing sigh
I remain Stable ..can ya believe that?!!
Some lung tumors have increased by a centimeter or two, but Doc Jazz explained to me, that it depends on where each pathologist sets the marks for measure..so it may seem like increase = when he/she is measuring from another point at the tumor than a previous pathologist…
or he just wanted to keep me positive!
According to this pathologist’ report, several of the larger lung tumors have increased…but the majority haven’t. I can live with that! (*ahem..literally).. at least there is nothing at my other internal organs or anywhere, abdominally. Tumors in my butt haven’t changed..though I am very well aware they are there..owwwch.
The tumor at my chest is still there but not growing..thankfully It’s mostly, now, just situated in the bone (rib) and cartilage..and sleeping.
There are references at the pathology report, to my liver and to a kidney, that I’ve not seen mentioned before. So, I’ll need to study up on what the medical terms mean. Hopefully nothing to be too worried about.
Dr Jazz told me that he has been in consult with two Sarcoma Specialists, about my case. One at Mayo Clinic and one at Madison (not the doc I saw there in May). They both assured him that he’s on the right path as for treating me. I’d have to agree!! I was so relieved to know that he’s really on my case..in a good way
We spoke of how, when I was first diagnosed, the cancer was in High Gear and taking over… and he turned it around/slowed it down (as he told me he would!). ..phew
I cannot tell you how lucky I am, considering that I know what other people with this sarcoma are going through and how they suffer ..numerous surgeries..treatments that fail..major pain& complications..and too many have died lately..I am a Very Lucky One. Why? I’ll just take it as lucky me and go from there
Dr Jazz is not a specialist with sarcoma..but he found the magic bullet to get mine into submission (not remission..that’s not really a possiblity with me) ..Stablility (growth slowed/no new tumors) is what we hope for and have had for a year now!
He proves to me that he is one hell of an oncologist and I fully trust him.
We believe (he and I..as well as the two other Docs) that the second chemo (Adriamycin) is what did the trick and showed the cancer Who’s Boss! ..but it’s the one I cannot have more = for the heart toxicity. But there is a new version that doesn’t have the same heart toxicity and that will be what I use when the damn tumors wake up and decide to party. He feels very positive about it and so do I.
But that will be another day.. for now, I’m all good
I take a drug that also keeps me stable, by preventing the cancer cells from getting the estrogen they use to grow. Now, I will be trying a new one that prevents the body from converting androgens to estrogen, in the first place. If anything changes (new tumors or rapid growth), I’ll be back on the old standard drug, pronto.
I will be back there next week for an infusion of Zometa..for my bones.
Then back in December for a standard port-flush..keeping the line open
In January, I’ll have another flush and it will be on the first day that the new oncology center will be open! That’s a big deal for me..because I went through a long few months, when I felt I’d never see that new center.
Next CT will be in February..seems so far away, thankfully.
Happy Thanksgiving
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Well… the Good News first :
The CT scan showed that there are no new tumors..wait, actually there are. There are two more tumors in my butt muscles. The hip discomfort I’ve been experiencing is most likely a combination of the tumors in the muscles there and some bursitis. Truthfully, I’ve never worried too much about the tumors there..they aren’t in my abdomen. Good enough for me.
The Bad News :
The Beast woke up.
The lung tumors, since November, have doubled in size. Several have grown together to form large masses. We’re talking measurements of 7.5 cm x 6.0 cm for the larger masses.. not good. Other tumors have doubled in size without having grown into another tumor. One, in particular, abuts the pericardium (sacs that surround the heart) and cannot be separated, as seen by the Radiologist.
She goes on to say that ‘there is a slight mass effect on the right atrium’. Not sure until I ask, but I assume that means that it’s pressing against my heart.
Whenever I see Dr Jazz, for CT scan results, I always look to his face as he enters the room. I came to understand that he’d enter the room with gusto and a smile to tell me the good news. Today, I stared and stared..waiting for the smile that didn’t come. I knew immediately that The Bad Time had arrived.
I told him that I’ve been preparing.. knowing the stability I’ve enjoyed for a year wouldn’t last. Yeah, I’m scared but I’m also trying to remain as positive as I can. Hey, no new tumors! It could and would be so much worse if there were new ones at my liver and/or elsewhere to battle.
So..the plan is to have another MUGA scan on Wednesday a.m. This is the test that will show how healthy my heart is. I need to have my heart monitored again because the chemo I will have is in the same family as the one that worked for me last year..the one that can damage the heart and cause cardiomyopathy.
I will have the scan and then, if the scan shows a strong heart, I will have chemo with Liporubicin (Doxil) afterward, same day.
I didn’t ask about what if the chemo fails. We won’t know for three more months, after the next CT scan, if it’s doing anything. So, yes..high anxiety. What if the growth continues at this rate? Not ready to delve too deep into that thought.
I did note, at the CT scan report, that the Radiologist said there was no pericardial effusion (fluid around the heart). That tells me that it is a threat..as is fluid in the lungs, since they are looking for it. Yes, I’ve read up a lot and sort of know what can go wrong.
..but I’m going to stay positive!
I hope you will too and send those good vibes my way
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phew! am I glad this day is behind me
Not that there was anything to dread..nothing painful. I just wanted it to be finished .. instead of waiting for it to come. I know..I can’t seem to find the right way to explain all that..so..yeah
The MUGA scan showed that my heart was good and strong.. good news
I came home and made a sandwich for Bruce and I to take along..and we went back to meet with Dr Jazz, before chemo.
I had prepared a few questions for him :
~ Can we consider one of the new angiogenisis drugs that are being developed (these drugs block the growth of blood vessels that tumors build..the hope is that they die of starvation, in short) …using one in addition to and at the same time that I recieve chemo?
He answered that he thought it may be overkill and possibly one may cancel the other out. ..(he’s such a a softie that he said his concern is not cause harm. Aww, Doc.. let’s roll the dice!..the cancer is Killing me) At that point I asked him if he would consult with a Sarcoma Specialist and knock around the idea. He agreed and hopefully a secondary plan will be forthcoming. I feel this way = what have I got to lose? ..let’s hit this with everything we’ve got.
~ I asked him about the CT report, specifically about the tumor that ‘abuts the pericardium’..and ‘has a mass effect at the right atrium’.
Yes, it’s beginning to press into my heart.
If the growth continues, he said I’d begin to feel pressure..discomfort. Wonderful
~ That brought me to ask about the risks of pericardial and/or pleural effusion ..what to expect and when to make the distress call.
If I feel very short of breath..one or the other may be happening. With pericardial, I may feel pressure (heart) as well as not being able to get a breath. My arm may begin to swell.
Pleural will mean extreme shortness of breath. Yet, he said both may be very insidious as it comes about. I have a feeling that I’ll sense it before it becomes critical, if it is to happen. Hoping that day is never to be.. because the chemo is going to blast these damn tumors
~ Then I asked The Big Question. I asked for a prognosis (eek!.. I want to know in order to prepare. Quite an attitude change from when I was first diagnosed. Now I’m ready, to a degree, to hear it…as much as it may suck). If the chemo fails and the growth continues to be as aggressive as it has been…how much time? He hemmed and hawed. So, I asked him if it was 6 months or less. *my inner ‘tough chick’ came out to ask that!
He said it’s very difficult to answer but he’d say ‘a year or less’. I brought up the fact that having to wait three more months for the CT scan to reveal if it was or wasn’t killing/shrinking the tumors was frightening. The growth is in high gear..and well..the cancer could be having a party while I’m in fear and stressed. That’s not exactly the optimal way to fight this sort of battle, emotionally.
Not to mention..aggressive growth could so physically weaken me that treatment would be withheld..simply too late.. not acceptble to me when I’m still strong and willing to take on all possible treatments.
He then changed his plan and decided we’d have a CT scan after the next dose of chemo, rather than after the third dose…if there is growth, we try another chemo. We’ll throw what we can at this crap until something sticks. Have I ever mentioned that sarcoma is difficult to treat? Yes.. and I don’t think we have three months to wait, to see if one or another is kicking ass..or is a waste of valuable time/my life.
I was so relieved by that change in the CT schedule..*big sigh
I assume the next CT will be at the close of March since the next chemo is mid March. Yes, four weeks between with this chemo..I wish we could double-up. This chemo has rather nasty side effects and will be in my system longer. The lows will be lower and the side effects not fun…longer time needed to regain endurance, vitality, and healthy blood, etc. Like it or not..Ms Impatient Me has to accept that more is not better .. still, four weeks between seems like forever
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Aside from the above, I want to let you know that I’m ok. I feel fine! I had two days of Low..scared.. apprehensive.. seeing nothing but the dark side and bad dreams, etc.. I had no answers and I was scared.. Rosie helped me, thank you, sweet sister.
I’m out of the fear and back into Fight Mode! Sure..I’m scared (always have been!)..but I truly detest being depressed. Today, I felt that lift off me and I am so relieved..
Hell..whatever happens will happen..but not before I give it my best shot!
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hi
popping in to let you know that I’ll have chemo next week = March 17.
I wonder if they’ll turn the chemo green *wink to St Paddy’s Day .. not probable, since it’s a bright orange color (who knew that some chemos are colored? Why? I have no clue ) ..adding blue would make it look like mud..yechh
I haven’t yet experienced the blistering etc. of feet and hands..or elsewhere. THANKFULLY! Hoping I’ll escape that side effect…but this chemo definitely has extended the time as for how my body repairs itself. The fatigue wasn’t so overwhelming for the first few days, as it was for previous chemos. It was less but more drawn out – like two+ weeks of feeling blah and pooped. To be honest, it’s scary because I don’t know if I feel like crap because the cancer is going strong..or if it’s the chemo.. it’s hard on the psyche
I did have a couple of pain events in my chest/shoulder/back..owwww. Not sure what was going on..what I can say is that I hope never to feel it again..and it’s not my heart = it was on my right side *phew. As well, I’m getting the sporadic night fevers again …not high, maybe around 100.5 or a bit higher. It’s called ‘tumor fever’. I can be positive and hope that it means the tumors are dying.. or ..ok, ’nuff about that
I am aware of a new drug, FDA approved for another cancer, that has recently been found to swiftly whack down soft tissue sarcomas..the trial just ended at the beginning of March.
I plan to bring all info that I’ve gathered to Dr Jazz next week. I’ll let you know about all that after I see him..but it sounds hopeful. I happen to know that he has consulted, about me, with the Dr that led the trial. Does Dr Jazz know about this drug? I will find out but I do believe that every little connection could be Big for me..as for treating sarcoma
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March 17, 2010
Saw Dr Jazz..poor man was running an hour late..and most of his voice was gone. He seemed so Tired.
We told him I was weathering the chemo well.. he gave us his email address to ..ask for/send, info..etc
~ Asked a tough question and got the answer I expected = my lungs are inoperable and have been since this sarcoma was discovered..there are simply too many tumors. Our hope is to find something to shrink them.. You can guess the rest..if treatments fail
Then I went off and had treatment..feeling good.. what other way is there?
I have another CT scan April 13.. then see Dr Jazz next day ..what happens after – treatment-wise.. we’ll have to wait
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had a CT scan yesterday..
*phew! .. today received good news
The chemo (Doxil) has halted the tumor growth. Nothing has shrunk, nor disappeared..nothing new showed up, anywhere! ..but the centimeter-per-month-growth is ended..for now.
This is really good news.. it is!
I can relax a bit and let the fear go. We have a window of opportunity to breathe, literally, and formulate the treatment course (without panic).
Doc wants us to travel to UW Madison Paul Carbone Cancer Center again. This time to see Dr. Attia, who is a sarcoma specialist and is also conducting a trial for my sarcoma type. I cannot enter the trial since I’ve had more chemo than what they are looking for. But, he’s more knowledgeable about the new sarcoma treatments and Dr Jazz hopes that, while we have this stall in growth, Dr Attia will suggest the next move = for when the Doxil loses its’ steam against the cancer.
I had chemo again, today..and have to tell ya..I don’t look so good right now. sheesh..green much, rae? I feel fine..just resembling the Muppet, Dr Bunsen Honeydew
Dr Bunsen Honeydew
thankfully, I’m not bald with this chemo..or it would be too close a resemblance
ok..expect that I’ll be very pooped out for another 2 1/2 weeks..ughh
..but I won’t whine too much..*You Hope!
I’ve been given Time..good enough for me
*update
Boo, hiss..grrr
While I was getting the Zometa and chemo infusions, a woman at the desk was working out the details of my visit to Madison. Early on, she came to me with the appointment set-up and it was to see Dr Bailey (the doc I saw there last year).
I told her that Dr Jazz wants me to see Dr Attia.. and that I’d already seen Bailey..and that I, too, want to see Attia this time.
While in Dr Jazz’ office, he mentioned that Bailey was moving into Administration..and that Attia was the Go To Guy, as for treatment suggestions, etc.
With that said to the woman setting up the appt. (sorry, forgot her name) ..she said that the woman on the other side of the phone at Madison wouldn’t budge = that since the Leiomyosarcoma is uterine in origin, I need to see Bailey.
Uggghhhhh! I no longer have a uterus..I’m not looking to be diagnosed ..the cells have metastacized and I want to see the guy with all the new news of how we might shrink/obliterate these lung tumors. Uterine LMS isn’t treated differently than retriperitoneal LMS, for example.
I’ve seen Bailey and fear that it will be a waste of his time and mine..and Bruce’s..and Dr Jazz’
I asked the woman (from GB oncology) to speak with Dr Jazz..
By the time we left, we knew that she’d spoken with Dr Jazz and that she still couldn’t get the woman (obviously with all the power to make decisions and whether you can see the Dr you, and your Onc., request we see) to budge. I told her she could call me later or tomorrow once something was resolved.
Later yesterday, she called. She told me that Dr Jazz had spoken with the Power Woman at madison. Nope..she wouldn’t budge..grrr
what is she..the Gatekeeper?
So.. Bruce and I will see Dr Bailey again..and of all days, one year to the day of my appt. last year. May o4.
There is good news, of a sort:
After getting quite dizzy yesterday..along with my color..I assumed some nausea was on the way. Took a Compazine..and yay..felt much better.
Today I’m bright pink..it’s my usual color day1 after chemo = I call it my hot-face day. Looks better than green
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May 05, 2010
Driving back from Madison (WI) last evening was interesting. We were driving from clear skies toward rather ominous clouds. Spooky-looking, dark clouds with cone shapes descending, then reaching, like fingers. This morning I heard that there was a tornado and luckily we missed that portion of the storm.. but I sure believe there was one by what we saw
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We met, first, with a ‘Medical Fellow‘ = a young Dr.. I forgot his name. Unimportant, anyway. On the way to Madison, Bruce and I listened to Doctor Radio. The first topic was about the heart and they had a long discussion about mitral valve prolapse..which I have. So this young Dr was examining me and when he finished, I asked him if he heard ‘the click’ at my heart. I told him I have the heart thing and he went back to listen for it. Nope, couldn’t hear it.
Then he said “sometimes, it resolves itself”.
What? hahaa..be very glad he’s not going into cardiology as his specialty! Bruce and I had a very thorough education about the condition on the way there..and we had a chuckle at the fact that he totally failed the test. I must have made him feel pressured. By the way, Dr Bailey knew last year, when he heard the click.
Ok..then we met with Dr Bailey (long story short..I wasn’t able to meet Dr Attia..but met Dr Bailey..same man I met one year ago):
Since the chemo (Doxil) has halted the growth in my lungs, Dr Bailey says that I “should ride that train as far as it will go”.
He doesn’t believe it wise to stop the chemo and try one of the new vascular agents to shrink the tumors.. or other therapies since they haven’t been found to have one-size-fits-all success.
For example, this chemo has worked for me, but it doesn’t work for many (most?) others with the same sarcoma. On the other hand, I failed my first chemo, which is used with great success for so many others. Go figure.
He believes that I should stay on this chemo and hope to remain stable long enough for a new treatment with a higher success rate than what is offered now.
He is more than happy to consult with Dr Jazz about me.. many trips to Madison will not be necessary. He welcomed me to call him at any time.
He also said that Dr Jazz, while not a sarcoma specialist, has done a great job as for my treatment. It’s good to have that confidence backed up!
Next week I’ll see Dr Jazz and get tanked up on chemo.. chemo that is beginning to do not nice things to my skin ..eek! I’m not to be in the sun..nor use Hot water..tight clothing, etc. Of course, the entire trip there, I was bathed in sunshine. While waiting in the examining room, I noticed my hands..very dark. Today..still dark…but only my fingers..and on the underside, as well. It’s like my palms have a tan? Ummm..I better stay out of the sun
..but it’s working on the bad stuff
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my upper lip, as modeled by Lisa Simpson
I cam >this< close to missing my eldest sister and brother in law’s 50th wedding anniversary!
..Now, understand that this event was a goal for me since this cancer saga began. It was very important to be there for obvious reasons (living!) but also, because I was three years old when they married and I was their miniature bride. My dress and hers were displayed at their big event..and we were able to pose together with them on manequins. It was a wonderful day, all ’round
That day, I would occasionally bump my eye tooth and flinch..felt like a spike driving up into my face. told Bruce on the way home that I believed a root canal was in my near future.
well..oye
Next morning? Swollen face and lip.. went in to dentist that afternoon for a root canal. They left the tooth open to drain.
Tuesday morning? I was so swollen I couldn’t speak clearly..and to look at myself in the mirror with Bruce.. sent me, first into horror, then into fits of laughter because I looked so stupidly ridiculous. Laughing only made me look worse..so more laughing! ..hurt to laugh, by the way..but I couldn’t help it!
The tooth didn’t drain (yuck) .. My lip was out to there >>
Back to the dentist on Tuesday ..he sealed the tooth, temporarily
Wednesday..so swollen and so much pain. Swollen cheeks and along nose, up to my eye ..back to the dentist. He removed the seal and was disappointed that there wasn’t a gusher! Said the infection would come out my gum
Yum
yech.. it did erupt but thankfully, while I was asleep
Finally, he sealed the tooth again, Friday.
I’ve heard of this sort of tooth deal.. and never want to go through it again.
Because of the infection, Dr Jazz canceled my chemo..so it will be next week (June 16)..
In two weeks, I’ll have the tooth finished up for good.
4 dental appt’s in one week? Don’t we get a medal for that?
glad That’s over and so nice to have my lip back where it’s supposed to be = rather than hangin off my chin
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First.. the Simpson-lip and face is gone..good riddance to last week!
I didn’t get the tattoo, inside my lip, that would say “Do Not Inflate Over 40 psi“
I feel well and all that, tho I looked like washed out seaweed yesterday (chemo)..and today I’m red-faced (and hot!) from the steroids…along with the post-chemo cough
I know! ..so little to complain about..but, yet, I do!
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Saw Dr Jazz yesterday before chemo..and I showed him the lump sprouting at my inside elbow.
He pushed and poked and said, because it’s ‘soft’.. it may be a lipoma = a fatty tumor (not cancerous)
From this point forward, we wait and see what it does..I guess. To be honest, I’d prefer a biopsy now..but that will come, if necessary
In mid July, I’ll have another MUGA scan, which is the test that will show how well my heart is functioning. Again, this chemo can be heart-toxic..so we have to monitor. Same day, I’ll have a CT scan..then see Dr Jazz next day (July 14)
crossing fingers, toes, and twitching my nose that all will positive
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July 16, 2010
Good news 
Heart scan shows it’s staying strong and ct scan shows ‘relative stability overall’.
There has been a slight decrease in size of one of the larger masses in my right lung. No new tumors anywhere..*phew
Thankfully, the chemo is working to stall growth and the drug I take is helping (Arimidex) ..just wish some of these tumors would disappear.
It was obvious that Dr Jazz was as apprehensive as I was about this scan..he was very relieved ..even a bit surprised..that I am stable. He mentioned to Bruce, as we walked out of the consult, that previous to reading my report, he had a sinking feeling in the pit of his stomach. Imagine how often the guy has to give bad news..how many times per day..per week..
After each scan, I request a copy of the written report. I have found that one radiologist may include more information than another. For example, at my very first scan, the number of lung lesions was said to be ‘more than 50′.. which is a lot
This radiologist counted at my lungs again..saying that there weren’t new lesions since the last scan..but that there are ‘over 120 separate lesions’. Lesion (or nodule) is nice way of saying ‘tumor’.
wow..
They vary in size from several millimeters to 7 cm diameter (near 3 inches).
I know..
over 100..??? ..seriously..that’s not easy to wrap my head around…
He also affirmed that there was mass effect against my heart.. but in two places, differing from how another radiologist explained in Feb. This radiologist wrote: ‘at least 2 lesions still significantly compress the right and left atrium extrinsically’. *the atrium are the top chambers of the heart
I thought there was one side being affected..now I learn it’s on each side. Scary..but thankfully the tumors haven’t invaded the heart muscle. I hope they don’t go there ..
So..I’m good to go for another three months (till next scan)
I’m tanked up on chemo for another four weeks .. and simply relieved to have those two days of tests and the anxiety behind me.. 
…………………….
August 31, 2010
A lot has happened recently.. instead of starting from scratch, I’ll copy the sequence of events, here, from the blog I keep for my family.
When I saw Dr Jazz and had chemo, earlier this month, I asked him about running another bone scan or a PET scan – rather than the standard pelvic/abdominal/chest CT scan.
I haven’t had a bone scan since I was first diagnosed two years ago. I have concern that we aren’t looking far enough..and that the CT may not show something in my bones, even between my hips and shoulders as it is, now. My hope is that a PET scan from head to toe will calm my fear of bad things happening – where we aren’t looking. Trust me, I know that this stuff can go to any place in the body, as I’ve learned from the LMS sarcoma group I belong to.
Dr Jazz agreed that we will do a PET scan in October if, of course, the insurance pre-approves. If not, we’ll do a bone scan, another MUGA scan (heart), and a CT.
Today ..I’m a bit concerned. wishing I could have that PET immediately
Over the past week I’ve been having intermittent, small fevers. Nothing high, mostly around 100 and they don’t last long. They spook me, though ..they’re familiar to a year ago. My fear is that it’s a signal that the tumors are growing again. Yet, it could mean that they’re dying.
Also, a few days ago I noticed discomfort in my left chest when I’d cough (which I’ve been doing more of recently). I’ve tried to distinguish where the discomfort is = in my lung or in my ribs. As of this morning, I can say that I’m pretty sure it’s my ribs. It’s sharper now, tho difficult to locate a distinct area by pushing on the area…it radiates from under my heart to my armpit, when I cough or bend, etc. and it’s difficult to take a good breath. *hoping it’s not a pleural effusion.. Earlier I did think I could locate it by pushing..now..not so sure.
Did I pull a muscle? Not that I recall.. if it were a muscle-thing..I’d assume it would be getting better, not worse. Maybe it is my lung
.. see how this gets me thinking? I can’t help it.
After telling Bruce what I’ve just told you, we agreed that we would wait to see how I feel tomorrow morning. He doesn’t believe that this is necessarily cancer-related..
..of course, I do. Every little bump, lump, ache, or pain is always ‘suspect’ to me. It can be stressful.. which is why I’m venting. *getting it off my chest..figuratively, at least
So.. if today goes alright..I will wait until the morning to decide if I need to put a call in to Dr Jazz
I’ll update here if anything changes, for better or for worse ..as soon as I can
…………………………..
*update – Wednesday a.m.
Long, fevery night. Again, not high..just enough to feel a tad miserable and cold-sweaty. The rib discomfort is about the same..but it’s easier to get a good breath today…hoping that holds for entire day.
I’m going to wait until tomorrow to decide about calling doc. I still have the hope that I pulled a muscle and it may improve. If it’s the same..well..then I won’t be able to deny it as ‘suspect’.
…………………………..
*update – Monday August 30
It’s still there..not an overall ache. It’s not something I can locate..I push with my fingers..no sharp pain..no distinct location..but when I cough or take a deep breath – then I can feel where it is.
So..I made the call to Dr Jazz early this morning and have spoken with his nurse, twice.
He wants me to have a chest CT for a suspected blood clot.
It’s now late day (4:13 p.m.)..so I would assume the CT will be scheduled for tomorrow? The last I spoke to his nurse was at approx. 1:00..still waiting to hear further.
** finally heard…I am scheduled for a CT at 7 a.m. tomorrow (Tuesday) .. oy, that’s early
………………………….
*update – Tuesday August 31
ok.. had a CT of my chest this morning to look for a blood clot.
Dr Jazz spends Tuesday’s at an oncology office in Sturgeon Bay, so I saw Tara Lien, nurse practitioner. First, we discussed my symptoms, when they began, etc. Then her beeper went off, signaling that the Radiologist had given his opinion of my test.
There isn’t a blood clot..how I wish there was.
The tumors have grown, in my lung, along the chest wall. They haven’t broken through..no fluid in my lungs.. but it’s bad news.
She consulted with Dr Jazz before returning to me and he outlined my next steps to Tara..
I will be having another CT tomorrow, if they can get the approval from insurance. If not tomorrow..hopefully by the end of the week. This one will be only at my abdomen and pelvis.. hoping not to see new tumors anywhere in there.
I will also see Dr Auchter /Radiology for a consult, tomorrow. The hope is to radiate the tumors for pain relief. I’ll know more after visiting him.
I will see Dr Jazz at our scheduled appointment next week..but there will not be further chemo. First, it’s not working any longer ..Second, I can’t have that sort of treatment while undergoing radiation. We will meet and go over all the above and discuss the next course of chemo, following the completion of radiation.
Yes..I’m upset..scared..thoughts whirling around
But I’m going to shake off the fear best I can and assume that we WILL find a treatment to get me stable again.
I’ll update tomorrow, if possible
………………..
September 01, 2010
geeze Louise .. the brakes were put on today, by Bruce and me.
Everything that I was told yesterday was, basically, overstated..as well as incorrect.
We believe, for the fact that Dr Jazz was out of office..that his NP took the radiologist opinion over the phone, that the radiologist believed my discomfort was on the Right side – when it’s on the left.. that the growth in tumors isn’t widespread – just one tumor on the Right (the one that presses into my heart..yeah, that’s not great..but it isn’t the culprit) ..then setting up another CT, scheduling me for the radiologist onc for subsequent treatment and also halting the chemo ..ALL was being rushed into without anyone having viewed the scans – compared to the report..on and on. Much mis-communication
They scared me pretty badly..I had one of the worst day and night ever. I thought I was a goner. Waking up all night to this nightmare…freakin stressed and frightened. Would I be here a month from now..two weeks from now??
Today, we came to understand that the radiology oncologist wasn’t even prepared to see me..he hadn’t reviewed my scans and said he’d not yet gone over my case with Dr Jazz? He went through my scans with us..at least, we got to see what they see..and that is when Bruce and I came to understand that he had no good basis for radiation. He was guessing. Beside all that?..he wouldn’t even be treating me, he was there just for today, covering for one of the staff rad/onc’s
Yet, he was prepared to radiate me… at the least, set me up for it?
Overall, they all need to get on the same page and figure out what may be the problem.
I told him I will not go for the radiation, preferring to take my happy pills = oxycodone, which will suppress coughing and may give the ribs or muscle time to heal..if that is what’s causing the hurt.
A bone scan is next and it’s what I’ve been wanting, anyway. I asked him, “why are we discounting that this may be ‘a rib thing’…so the bone scan is being set up for next week..then see Dr Jazz afterward.
Everything was being done on Fast Forward and bass-ackward
Crazy.. I am beyond relieved that it’s not what I was told yesterday! The weight of it was massive and I’m still getting my head around the fact that I don’t have to be so scared.
Bruce was stressed..I’m sure I stressed you, too!
We have time.. one foot in front of the other… no 10 ft leaps forward
update:
Tuesday, the 7th, I will be having a bonescan and another CT scan
…then I’ll see Dr Jazz next day
Until then, wishing everyone in the States a relaxing Labor Day weekend
*I’m so thankful that mine won’t be all stressed out, as it was looking to be earlier this week
…………………….
September 08, 2010
Activity that showed up at my bone scan/ribs indicates that the left-chest discomfort is, most likely, cancer-related
Yes, it’s in my ribs..as well, my left shoulder shows activity..again
The good news is that the rib-discomfort has eased. How much is for the fact that I’ve been taking oxycodone? I don’t know..but it’s better and that’s good enough for me…right now.
We need to focus treatment toward the rapid growth of some lung tumors..so any radiation will be put off until and unless the pain becomes worse at my ribs..if breathing becomes difficult, for example.
Luckily, there are no metastasis to my abdomen.. lung tumors are the major concern. One of them grew near 3 cm more (almost an inch) since the July scan..just five weeks ago. That July scan showed some shrinkage..and overall stability. Shows how quickly this game can change.
I will hopefully begin taking a daily chemo in pill form, soon = trade name, Temodar. It can cause nausea, so I will need a pricey anti-nausea med that the insurance may balk at. They (GB Oncology) are checking now to see if the insurance will cover the cost..then get me started on the chemo pill. If the insurance won’t agree, they will write letters, etc. to persuade. If it’s a no-go, then I suppose we’ll have to try another anti-nausea med and hope it will control that side effect.
Also, I will be going to Milwaukee to meet Dr. John Charlson, Assistant Professor of Medicine at the Medical College of Wisconsin. He is running a trial for a chemo that is not FDA approved in the States, trade name Yondelis. It is widely used in Europe with good success rate for soft tissue sarcomas.. getting it here is not so easy. If I am accepted, I will have to travel regularly to Milwaukee. It may be a 24 hour infusion
Everything, as you see, is in a bit of disarray right now. What happens when..and all sorts of other questions have yet to be answered. Radiation may be able to done at my ribs while on Temodar..but if I am accepted to the Yondelis trial, radiation probably would get me yanked off.
I’ll update when I have info squared away.
…………………..
September 10, 2010
Found out this morning that insurance has approved both Temodar and Zofran (for nausea) and they will be shipped overnite to me.
That’s great news
..but, I am also waiting on being contacted by the Milwaukee hospital (Medical College of Wisconsin) about the Yondelis trial.
I found information about the trial yesterday (here) and it appears that I meet the criteria…most importantly, that I am four weeks out from treatment (chemo and/or radiation).
If I’d begin the Temodar, that would probably make me ineligible. Then again, being without treatment, whatsoever, is scary…
I have to be patient and hope that next week will bring an answer. Maybe I’ll be accepted to the trial and maybe the treatment with Yondelis would be begun soon. I just don’t know anything about that.. waiting for a plan can make me rather anxious..knowing the tumors are happily bulking up.
I’ll be seeing Dr Jazz next Wednesday..hopefully, by then we’ll have more information…and I’ll continue to update here
*this may be of interest to you :
Here is a link to a short article ..it is in regard to a documentary airing on Fox News this Sunday evening, ‘Winning the War on Cancer’. The airing times are listed at the article.
The woman interviewed, Vicki, is a member of the online LMS group I belong to and is included in the documentary.
She has the same as me = uterine LMS.
The good thing is = she’s bringing awareness to sarcoma. That is something that we, who have it, know well = it’s little known of, in general..and research, treatment, etc. reflects that. We all are flyin by the seat of our pants, cancer-treatment-wise
…………………..
September 14, 2010
Gooooood news!!
I’m so happy I could pop!
From what I know, now, I’ll be meeting Dr Charlson Thursday a.m… and be accepted to the trial for Yondelis!
Infusion would begin, same day.. and be 24 hours-long. Yes, I’ll be admitted.
Lots of phone calls today with caring, compassionate, professional people.. and such relief!
It’s happening at a rapid pace..yay!!
I have great HOPE.. cross your fingers
*(the Temodar and Zofran also arrived today.. but that package will be left until I know I need to open it.. and truth be told? I dread to take it ..I want the Yondelis First!)
……………….
September 18, 2010
“there’s no place like Home”
.. how true that is! Gosh, my own pillow, what a small little thing that is so comforting.
We arrived in Milwaukee by 10:30 and went through all the clinical stuff, the meetings (Dr. Charlson is warm, wonderful doc!) ..finally I was taken to a room at Froedtert. Let me tell ya, that’s a massive hospital and what a maze to get through! It’s overwhelming and confusing, to say the least.
Dr Charlson was really amazed at the homework and all that Dr Jazz and I had done..and how fast-paced our entry into this trial was. We may have gotten into it all at a fast pace, but once I was to my room (holding cell) for the infusion..time sort of fell away. Bruce and I had hoped that the infusion could begin by noon’ish..so that the stay wouldn’t seem so long the next day.. but that wasn’t to be. The infusion didn’t begin until 4:30 and there began the countdown of 24 hours. After that, I then had to have more nausea meds and another hour drip of magnesium because the blood tests showed I was low.
We left, finally, at 6:00 p.m… nearly running for the doors..if we could find our way out!
It was long but the next visit, in three weeks, shouldn’t be that way. We have much of the particulars and paperwork, meetings, etc. out of the way. Next time, I will have the intermediate and preliminary blood work done here, in GB. That is to prevent me from traveling to Milwaukee..having blood drawn only to find the counts too low to have the infusion. Thankfully, Dr. Charlson will have those draws all done locally, the results faxed back. As well, the CT followup, that will happen after the 2nd infusion, will be performed locally! yay
The infusion went well..just one bout of vomiting. That happened out of a deep sleep and just like that! No warning.. but I DID make it to the basket!.. tho I did get out of my bed at Bruce’ side ..and my IV pole was on the other side..eek! Poor Bruce..in a cot with no where to go and me about to hurl!.. hahaa. Luckily, I realized I had to switch direction in time. So, they gave me some Compazine in my IV and that also helped to put me back to sleep. That was the only occurrence, thankfully. I had another dose of Zofran by IV (for nausea) before I left..and have to take it by pill for the next two days, at least.
The overall experience was long, yes (I’m not good about being confined..trying not to get antsy and pace..wear a path around the room..towing an IV pole that’s plugged into the wall) ..but the staff there at the Cancer Care Clinic and at Froedtert are above par. Really very wonderful were each and every person we dealt with and met. Even the cleaning staff.. everyone so friendly and warm.. patient..compassionate. They all made the experience very pleasant
Ok..if all blood work, in ten days, goes well.. and the preliminary to infusion labs are good..I will have another treatment in three weeks.. then a CT sometime afterward.
Until then.. I hope I’m good to go..tho my hair may not remain…
……………….
October 12, 2010
Yes, I’m late updating here
I was just so pooped and miserable 
I can’t really complain much though. This go-round wasn’t as tough on me as the first and didn’t last as long. At least, I hope it’s over..sometimes it comes back after day of feeling ‘better’. Still have no appetite since Friday and have to force-feed myself. Food is SO unappetizing..blech 
This is what’s coming next :
~I’ll be having a CT scan next week (not sure of the date yet..it is tentatively scheduled for the 18th). The scan will be done here in GreenBay.
~Along with the scan, I’ll get a flu shot, have an IV drip of Zometa (for bones), and get the mid-cycle blood draw to see how my blood and body is holding up to the chemo.
The CT will be read in GreenBay, as well. Dr. Jazz will be giving me the results, possibly by the next day. My anxiety is going to be major.. Then the scan CD will be sent to Dr. Charlson in Milwaukee.
If the results are positive (showing stability or regression of tumors), I will return to Milwaukee on October 28/29 for another (third) cycle of Yondelis.
If the results show progression (growth or recurrence), I will still go to Milwaukee, but only to wrap things up with Dr. Charlson and sign out of the study.
If it turns out that the Yondelis has not had the hoped for response, I will probably begin taking the Temodar = the oral chemo pill taken daily.
Speaking with Dr. Charlson about the schedule of tests in coming weeks and the ‘what ifs’ of treatment, I got more information from his face than from his words. When stability ended almost a year ago, the tumor growth was at 1cm per month. When stability on Doxil ended late this summer, the growth was 3cm in just weeks. Since we do not know if the Yondelis is working..his concern for what the growth could be, at this point, was all over his face. It was one of those moments when reality hits me square between the eyes and in my stomach…*shiver
………….
Tidbit :
The IV bag of Yondelis is not big. It’s just the one bag infused over 24 hours. It drips so slowly that I cannot bear to watch the drip..nor to look at that bag that appears to never empty. All I pay attention to = is the clock on the pump that tells remaining hours/minutes. It’s maddening, I tell ya.
I discussed this with one of the nurses..how s l o w this infusion is. She pointed to the little cup that pills are dispensed in. She said “that cup holds 33cc’s, your infusion per hour is 22cc’s.” That equals 1 1/2 tablespoon per hour or… .74 fluid ounce
good grief.. do not watch the bag… 
………………
October 22, 2010
Yondelis is kicking some ass!
I’m Stable!!
After only two cycles, the massive growth has been stopped dead in its’ tracks!!
There has actually been some improvement! ..most notably in the new rib (bone) lesions
To be honest, I’m floating.. am I dreaming? I wanted to be Hopeful..but I was also preparing for bad news.
Now? I can let that go! I don’t have to live in limbo.. fear and uncertainty. I don’t have to think about dying in a few months..
I think this must be like getting out of prison and hearing the gates close behind you.. realizing a Future in front of you… a road, without a stop sign looming ahead
Melodramatic much, rae? hell yes! This news is so big for me. I was at the tipping point two months ago. Now I can wobble for a while.. 
I didn’t see Dr Jazz today for the news, I saw Ruth, his Physicians Asst.
She spent the entire time crying! She doesn’t get to give such big news too often and she was overwhelmed..as much as I was. She was simply so happy and empathetic.. her eyes running over constantly.
She talked about my history and how much chemo I’ve had..how hopeless it was beginning to look by this August. She emphasized how Huge this is.. and we just laughed..and took big, cleansing sighs.. hugging and laughing and smiling till our faces hurt
Then, she went to another room and came back with two party horns and we blew them! hahaa.. it was an awesome day for us, both
………………..
November 09, 2010
I’ll be having an MRI of my left shoulder on Thursday, Nov. 11.
Since having a flu shot in mid October, I’ve not been able to lift that arm without difficulty and discomfort. Sometimes, it feels like things are clunking and thunking around in there.. it’s an ‘eww, ick’ and achey sort of feeling.. and familiar to when that shoulder/bones were disintegrating at the beginning of this sarcoma ordeal.
I have no idea if the flu shot had a thing to do with what’s happening ..it’s probably some weird coincidence. Of course, I have an inkling of what’s going on .. the MRI will hold an answer. The bone scan, in August, showed increased activity there.. I recall saying, “wow, look at my shoulder”, when viewing the scan with Dr. Jazz.
Dr. Jazz has ordered the MRI and suggested, if it’s what we fear (that the bones, cartilage, ligaments..or whatever, are again being chowed-down by cancer cells), we’d need to radiate
That prompted me to email-inquire of Dr. Charlson, the doc who is overseeing my trial-treatment with Yondelis = “Can I have radiation while enrolled in this trial?“
I suspected what the answer would be, so I asked an additional question = “Can I drop out of the trial, have radiation, and re-enroll in the trial four weeks after my final radiation treatment?” (*one of the criteria for acceptance to the trial is being four weeks out from treatment)
The answer to both questions is: No
*sigh*
Friday I will get results from the MRI .. if it’s not good news, I’ll have no choice but to forego radiation in favor of continuing the Yondelis. Yondelis is keeping the tumor growth in check, maybe even shrinking tumors.
Who needs to use their stinking left arm, anyway? 
I will look at it this way: thankfully, I’m right-handed!
..or? I’m way ahead of myself and we’ll find out that there’s nothing serious happening.. it’s my norm to think ahead.. not always is that a good idea ..but I’ll be prepared!
………………….
November 23, 2010
oopsie.. looks like I fell behind here
Truth is, I have been coming and going near each day.. so many appointments and this and that.. oye, my life is not my own, it seems. It sometimes feels like I’ve been made a prisoner and a pawn of this blasted disease.
How often I wish = it would just Go Away
It won’t. I can never stop fighting and dammit ..I’m tired and beat up from the chemo and a bit sick..and Ornery!
..and my kitty, Melvin..keeps puking on my sofa! dang furball-butt. Why do they never puke on the hard floor..why always on light carpet or furniture??
I can’t taste salt? Food really sucks when it has no taste..and I love salty flavors. This chemo kills my appetite and my taste-buds for a week..can’t bear the smell of food cooking.. but when they turn back on? oh Yummm..does everything taste good!
So there..mini rant over
and, it’s supposed to snow the next day or two!! I can’t wait
Ok.. I’ll give you the short story of what’s up:
Yes, the MRI showed that the bone is being eaten away, again.
Thanks to Dr. Jazz and Dr. Charlson agreeing that this is not ‘progression’.. as well as the bone scan showing the activity before the trial, the yondelis Trial Director granted me permission to have one treatment with radiation and remain with the trial *applause!!*
I will be having a super zap of radiation to that shoulder tomorrow, Nov. 24
Then, I’ll probably spend most of Thanksgiving in bed.. happily recovering from chemo that I had last week.
I will have another CT scan before the next chemo cycle .. if all is positive with that scan, Yondelis will continue.
The scan and chemo will probably fall the week before Christmas.. so, yes.. I’ll probably be spending Christmas in bed, as well
I think that’s it, for now. I’m off to my bed..
Happy Thanksgiving you USA’rs!
……………..
December 01, 2010
My right foot is going numb 
Chemo can cause nerve damage/peripheral neuropathy .
I had a bit of neuropathy at the ball of my foot for some time, probably a year and a half. It didn’t bother me and I only felt it when I was barefoot.. felt like something was stuck to the bottom of my foot.
Since having chemo last week, the numbness is more pronounced and is spreading. Each day, more of my foot is tingly…sort of pins n needles. As of this morning, it’s gone to all my toes and across the sole to my heel.
I don’t like how sudden this is…nor how rapidly it’s progressing.
I did some research that suggests taking B vitamins. Bruce will pick some up today. Monday, I see Dr. Jazz and hope that he will have something further to recommend.
*update:
I did see Dr. Jazz and he told me that double blind studies (using placebo) found that there is no evidence that B vitamins effect neuropathy. Oh well, I’ll take them since I have them..and well..they’re good for me .
We Did talk about antidepressants. I have noticed that I have been feeling ‘dark’ more often..not able to get happy and all that. Dr. Charlson told me that my body is under assault as well that the stress, both physically and emotionally, has effect on brain chemistry = anti depressants are a tool. I am at fault for not taking one sooner. I felt that I could muscle through this, tough it out..to take ‘something’ meant that I was weak. Blah, blah ,blah..how we talk to ourselves at times..dumb woman, take the help that is offered!
As it turns out, there is an anti depressant that has actually been found to relieve/prevent/lessen neuropathy for some people. Two birds with one stone..a two-fer-one..a drug with fringe benefits! So, yes, I am now taking Cymbalta with hope that it will be helpful for my nerves.. *pun intended*
..and I look forward to being reunited with my ‘Happy Bubble’ again
……………
December 01, 2010
The radiation to my shoulder was 3 times the normal dose .. *POW!
Dr. Vanderwalle (Radiology) said that my collar bone can be compared to being calloused..sort of like how a tree heals around a wound. The tumor is inside the shaft. There IS a shaft? Yes. The bone is actually rebuilding itself around the cancer..isn’t that something? She said that there was just a hint of bone left, where it had been so disintegrated, for it to begin to resurface and repair. As well, the monthly Zometa infusions are helpful. It just amazes me that my collar bone is ‘coming back’…reforming
A week from Monday (Dec. 06) I will see Dr. Luloff. He is the orthopedist I first saw about my shoulder pain (May ’08)..and who gave me The Bad News.
The MRI revealed bursitis and rotator cuff muscle tearing.. so I hope Dr. Luloff can suggest something, short of surgery, to ease the discomfort and regain more use of my left arm.
………………
►December 15, 2010
I was given an early Christmas Gift Monday!
That morning I had a CT scan..then saw Dr. Jazz shortly after for results (my scan was put ahead of others to the radiologist)
Results are, in a word = Remarkable
I’ve had two treatments with Yondelis since Octobers’ scan (when the scan showed that the aggressive growth was halted).. and the lung tumors are shrinking remarkably 
Dr. Jazz compared the two scans, side by side, so that I could see. My jaw dropped. The large tumor that was pressing into my heart and two other large tumors that were growing into each other..have shrunk (by his estimate) a good 15%. The two that were meeting have separated and are visibly smaller. These are just two examples of what the radiologist reported.
I don’t have a copy of the radiologist’s report, for more info, because there wasn’t time for her to dictate it. I’ll try to get a copy once I arrive in Milwaukee this Thursday and go over this success with Dr. Charlson, before my 5th treatment. I can’t wait to see his face!
The news is Good..all so Good! As Dr. Jazz says “we’re on borrowed time”. This is exactly what it means. Chemo won’t work forever. He likens it to WWF wrestlers and once in a while..the good guy wins. Then, another day a bad guy throws a chair and the good guy goes down. Got to love Dr. Jazz.. hahaa
So.. we’re borrowing time. The tumors shrink (could they disappear? let’s hope!) and give us a window of time and room in my lungs for the day the chair gets thrown. That day is far away, I hope.
Happy! Holidays
hi
popping in to let you know that I’ll have chemo next week = March 17.
I wonder if they’ll turn the chemo green *wink to St Paddy’s Day .. not probable, since it’s a bright orange color (who knew that some chemos are colored? Why? I have no clue ) ..adding blue would make it look like mud..yechh
I haven’t yet experienced the blistering etc. of feet and hands..or elsewhere. THANKFULLY! Hoping I’ll escape that side effect…but this chemo definitely has extended the time as for how my body repairs itself. The fatigue wasn’t so overwhelming for the first few days, as it was for previous chemos. It was less but more drawn out – like two+ weeks of feeling blah and pooped. To be honest, it’s scary because I don’t know if I feel like crap because the cancer is going strong..or if it’s the chemo.. it’s hard on the psyche
I did have a couple of pain events in my chest/shoulder/back..owwww. Not sure what was going on..what I can say is that I hope never to feel it again..and it’s not my heart = it was on my right side *phew. As well, I’m getting the sporadic night fevers again …not high, maybe around 100.5 or a bit higher. It’s called ‘tumor fever’. I can be positive and hope that it means the tumors are dying.. or ..ok, ’nuff about that
I am aware of a new drug, FDA approved for another cancer, that has recently been found to swiftly whack down soft tissue sarcomas..the trial just ended at the beginning of March.
I plan to bring all info that I’ve gathered to Dr Jazz next week. I’ll let you know about all that after I see him..but it sounds hopeful. I happen to know that he has consulted, about me, with the Dr that led the trial. Does Dr Jazz know about this drug? I will find out but I do believe that every little connection could be Big for me..as for treating sarcoma
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January 12, 2009 at 6:47 am
Cackle
Way to go Rae, I hope you are enjoying the New Year ……and all that snow. Do you know I’ve NEVER seen it snow. Promise to self, one day I will see it snow!
January 20, 2009 at 3:47 pm
Robyn
hey there rae – those staph bugs are monsters and i’m sure glad they
got right on top of it and glad you were able to come home (gotta luv
Dr Jazz!) and still have your treatment (3rd boob huh!) and keep your
port
watching the Inauguration coverage here this morning and catching
up since the boys are away overnight and pc is fixed and all mine!
(cant wait for school to go back and a bit more of a routine to return
to the madness)
marcus did well with his final exams and got the mark he needed to get
into his university of choice and course of his choice IF he chooses to go
that route … he’s still wanting to go to ADFA (Australian Defence Force
Academy – uni down in Canberra and officer training for Army) but we’ll
see .. james had to forego Visual Design for his last 2 high school years
as he needs to take Physics (OMG! physics!?!) if he wants to get into
ADFA to do Pilot training … he was really disappointed to have to give the
Visual Arts and Design subjects away … but I’ve told him he can always
pick them up again in college and its something that will always be within…
PHYSICS! yeck (this comes from a person with not one scientific bone in
her body – give me history and languages anytime! lol) (i didnt hesitate to
drop Biology to take up Japanese lol
you have your chemo today so will be keeping you in my thoughts all day Rae
(sure hope comments are allowed to be long lol (sorry)
love to you
Robyn
January 30, 2009 at 5:50 pm
Sherry747
Hey G-friend,,,
Glad to hear all is going good again..Those staph bugs can sure knock the wind right out of your sails, can’t they..
Happy belated Birthday;; 52 huh—-I remember that age,,LOL,,
And guess what?? ???? Ok I’ll tell ya –can’t keep ya guessing for long..LOL.
After letting my hair grow down to my butt,,I got it chopped off to the neck and sent in an 18 inch long ponytail to *Locks Of Love* the first of the year.. GO ME ,,,,
Bill bout had a fit,,but I told him”Mine will grow back–theirs won’t”
He has done this 3 times ,, so whats the differance. I swear that mans hair can grow 2 inches over night,,might be because he is 3/4 cherokee.
And best thing about it,was no gray was in the ponytail,,LOL,, its all at my temples…So anyone needed Dark Auburn hair its there now..
Love ya girl,,you stay well.. Sherry
January 31, 2009 at 6:02 am
Cackle
HI Rae, sounds to me like you’re being your cheery self. I hope you’re still enjoying all that snow.
February 12, 2009 at 2:45 pm
Mary Rita
Rae I am so glad you are keeping this blog. I think about you often and pray for you constantly! I hope your March CT scan comes back with the BEST of news!
Love
Mary Rita
February 17, 2009 at 11:50 am
rae
Thank you, Mary Rita! …
and Cackle..you bet I’m lovin the snow..(more coming today *Feb 17)
Sherry.. how brave of you! ..and so honorable
Robyn.. I need to set an alarm to get on IM with you again! ..miss our chats.. and our venting sessions!
March 5, 2009 at 5:32 pm
Melanie
Well Shit!!…I finally found you rae!!….alive and kickin!!…I am so f-n happy to see you are feeling better….we HAVE GOT TO TALK….I miss you like the dickins and we do need to catch up….Keeping you in my thoughts and prayers….((((((((((((rae))))))))))))))….Melanie:)
March 10, 2009 at 11:35 am
rae
hey..Mel!!
I’m still battling chemo effects but hope to return to normal very soon.. we can hook up then?
great to see you pop by
March 11, 2009 at 9:40 am
Melanie
God luv ya darlin
I look forward to hearing from ya!
March 14, 2009 at 1:32 pm
Sherry aka krestie krew
Long time… hello and Iam glad I found some good news when I finally got back online…. I miss you. keep up whatever you are doing it seems to be working… to make a long story short, I am now living in a RV in a campground I am not crazy about but it is affordable….LOL!! Looking for a place to live permanantly (sp?) I may end up leaving TN and going to South Carolina to be close to my best friend, another dog breeder cause my family might as well be nonexistant! (as usual) none of them have even called to see if I am still alive or ok or whatever…(seems to be thier norm) I don’t need any of them and sure don’t want them getting into my business at this point….(old and cynical me, but I love me) and my dogs. err….. did I say family also includes daughter and grandchildren? At 63 do I relocate and start out on a new venture.. hell yes! Just gotta decide where to start….LOL!!
Rae, love ya and miss ya, love, prayers, good wishes and thoughts, oh yeah, a great big hug too….
April 9, 2009 at 1:48 am
Carma
Rae, I’ve been thinking about you a lot lately. I don’t go to the groups much anymore so I hadn’t heard anything. I finally asked Heather (nascarmom) if she had heard and she looked you up here. It breaks my heart to know that you’ve had to suffer so much and that your outlook is so grim. I was SO glad to get to the bottom entry to read that you have a day of rest. I guess here is where I should say something positive for you… but I’m so mad about cancer and it’s so disturbing to me, that I can’t think of anything really good and encouraging to type. Please know that I do think about you, and I always hope that you are peaceful and comfortable… thanks so much for keeping everyone updated.
prayers and hugs… Carma ♥
April 10, 2009 at 8:24 am
rae
hi Sherry
sorry it’s taken me so long to reply! ..no good excuse
I’m happy to hear that you’re settled but saddened to know that you are estranged from your family. I’m sure those puppies, tho, give you lots of comfort and companionship!
be good to yourself and go get a puppy hug!
April 10, 2009 at 8:28 am
rae
hey Carma
I was happy to see you’d found my little nest here.. but please don’t feel bad for me
I feel really good (except for a bout of insomnia lately!) and I’m determined to remain feeling well. I go about my day, as much as possible, living as if nothing is ‘wrong‘. That’s my Happy Bubble thing
It works!
April 11, 2009 at 11:25 pm
Cackle
Hang in there Rae, I think of you often. You make me smile
Happy Easter
April 12, 2009 at 6:15 am
Tess
Hello Rae,Happy Easter.
I come in often and read your blog.You are such an inspiration to others.
I have bookmarked your asian cook blog.Will be trying out some of those receipes!
Take care dear Rae.
Tess xoxo
April 18, 2009 at 1:48 am
Sherry747
Hey there Girlie,,
Sounds like everything is super right now..I always pray for you,,as so does a lot others..
Glad to hear no new It’s have shown up..and hey its Spring ,,the flowers are coming up,trees are budding out and new life begins.
I have a bit of news for you that I know you will be happy to hear…….I have opened my own group…Peggypsp and CraftyKid are my admins….just thought it was time for me to do this….”"I can hear you now,,saying well hell its bout time”",,I know you told me to do this a long time ago.Well now I have….
Still setting some things up on it..mainly the permissions,,but we are open for business…lol..
Love ya girlfriend,,take care,,, Sherry
May 2, 2009 at 1:31 am
Cackle
Hey Rae,
The latest news you sent us is just wonderful. Stay happy and focused on getting well. Keep on laughing
Cackle
May 2, 2009 at 2:04 am
Sherry a/k/a Krestiekrew
Yipppeeee! Rae, so glad you have great news and new beginnings here. Keep up the positive attitude and continued stability. I am very happy to also tell you that me and the ‘naked kids’ are finally out of that damned RV! It is up for sale, cheap too…LOL!! I managed to get a refurbed 16 x 80 mobile home from where I used to work and the lot manager made sure everything worked or was new, heat pump, water heater and complete replumbing whole house + lots of other stuff. Got no furniture…heehheh, sleeping on queen raised airbed, using dog crate for tv stand, and have a folding chair to sit in and …..use the dog food airtight container for table/desk/nite stand. Do I care ….. hell no I am happy as a clam and the kids are having a ball running around in so much room. asa I can sell the RV I will get furniture.. I do however have blinds so the not close neighbors don’t have to watch me streak,.,..LOL!! ?That would scare the crap outta them. AND on a private lot over an acre, I love it.
You keep up the good stuff and enjoy life girl…. we miss you on the porch…stop in when u can. love and tons of hugs
May 4, 2009 at 7:35 pm
Patches
Rae, I think ‘somebody up there,’ loves you as much as we do down here. Keep on keepin’ on!
Lotsa love,
Patches
xox
May 5, 2009 at 5:26 am
June Huppatz
Rae, I stumbled here via your wonderful tuts a few weeks ago. I come back now and again to see how you are. I just felt I wanted to say ‘hello’ and ‘keep fighting’.
I have great admiration for the way you are handling IT! You write with humour and the positiveness shows thru.
A friend of mine has been fighting a sarcoma for nearly six years after having been given only six months. She too is positive but also realistic.
I am lucky in having survived breast cancer.
Just wanted you to know someone here in Australia is sharing your journey and I have you in my prayers and thoughts.
Take care, June.
May 10, 2009 at 11:50 pm
crimmy
wow – MY head is spinning too!
you’ve upgraded from a rare case to an especially rare one from the sounds of things – oh how you love a challenge girl!
((((((big hugs)))))
thinking of you – hope they can give you some answers real soon cos i
know until they can it’ll be buzzing round and round in your head!
May 22, 2009 at 9:07 am
MollyG
Hi Rae! I asked about you at the Porch and was led to your blog by Sherry aka Krestiekrew. Wow! What a journey you are on and girl, you are an inspiration! I laughed and cried reading through this morning. Thanks so much for sharing yourself… I feel honored to follow along. I should have known you were a good writer since I have enjoyed many of your tuts as I continue to learn PSP. And now you are teaching us how to live as well. I am in awe of your spirit and generosity and I will keep you in my thoughts as you forge ahead to enjoy anniversaries, birthdays, seasons and life.
Hugs with love,
MollyG
May 24, 2009 at 9:08 pm
may
Rae i just cried a whole bunch for you. i knew you had a blog but had not visited in a while. the last time i was here you didn’t have much now you have a whole story and more. i am still praying for you and am so proud of the strength you have had to stand up to this.
you are amazing and i am proud to have gotten the chance to know you.
my sil was just diagnosed with bc and i use you for a wonderful example of strangth. i didn’t realize what you must go through trying to keep up with info for everyone so i believe i shall mention a blog for her too
i continue to send prayers up for you and well wishes your way.
may you continue on to enjoy many seasons of love and happiness.
God bless you
(((hugs))) and love,
may
May 26, 2009 at 11:22 am
rae
wow.. it’s so nice to ‘see’ all these familiar names
Thank you all for your well wishes.. and for your warm hearts
Nice to meet you, June! Yes, sarcoma is a battle..I hope mine will be long
..my best to your friend..and congrats on surviving BC!
Tess! yes, do try some of her recipes.. I am going crazy making them..and not one has been a disappointment.. Yummmy!
May.. I will hope your SIL beats that nasty BC.. thankfully, they have fabulous treatment now.. I’m pulling for her
Yes, show her a blog or two and have her start one.. having one reduces a lot of stress for all involved = family, friends, and patient. It’s so much of a relief to have a place where one can write everything from appointments and results..fears, feelings..and Good News!
Sherry..you’re so strong.. and resilient! It’s good to hear the ‘happy’ in your comments
Puppy hugs to you
Cackle..thanks for the well wishes.. hope your summer is off to a good start!
MollyG..wow, long time no see! One day..maybe I’ll be a rocker again.. in fact, it may get my mojo back?!!
Patches! well how the hell are ya?!! good to see you
yeah Crimmy.. of course, I always was and am.. a bit of a challenge!.. why stop at cancer?
rae
May 26, 2009 at 11:30 am
Patches
Rae! Better than nothin’, girl … better than nothin’!
May 26, 2009 at 2:08 pm
rae
better than nuthin is good enough for me, Patches!!
I’ve always felt akin to you.. we could make for lots of trouble, methinks.. fun-trouble
!!
any ideas? ..huntin ferrets, maybe?
May 26, 2009 at 6:13 pm
Patches
Yup! I think we’d have a lot in common, Rae … ‘Trouble’ being our middle name for one. I was thinking, maybe we could find a park bench somewhere and watch all the guys stroll by .. try to figure out what they’re wearing .. boxers or briefs. Bwahahaaaa. Love that commercial.
May 26, 2009 at 9:44 pm
Naia
Aloha rae, you rascal. I’m still on my knees chatting with my God about you. He can work wonders ya know. I don’t know if you remember Patti from Florida from the Porch but she’s been fight cancer for the second time…chemo for almost a yr now. Her last one is suppose to be sometime in June, but they keep adding to that each time it gets close. I keep in touch with her thru email and phone. Sometimes ya just need to hear a voice. Wish I could hear yours. Stay Stable!!! GBU. me ke aloha, Naia
May 27, 2009 at 12:24 pm
rae
aloha, Naia
You do hear my voice = whenever you laugh
Send my best to patty.. what a long struggle for her..I hope she’s feeling positive and on the road to better health!
Chemo is not fun and I understand those long months.. I’m so thankful to have mine behind me (for now, anyway..I know I may have to begin again)
Tho, being on chemo does make one feel that Something is fighting the war with us.. other than I am right now = sort of feeling that I’m on my own against this damn cancer.
There are two sides to each coin, in other words
May 28, 2009 at 6:49 pm
Naia
you’re amazing rae…I sent ur message on to Patti.
me ke aloha, naia
May 28, 2009 at 7:40 pm
Carol aka LadyLill
Hi rae. I just wanted you to know that I keep reading your blog and following your story. You are amazing to me. I keep you in my prayers each day and will continue to do so. Take care of yourself and keep that great attitude. It really does help to stay strong and positive in your thinking.
May 29, 2009 at 8:46 pm
Patti
Hi Rae,
I wanted to say hello…we both have had a long haul this past year. Naia sent me a email about how you are doing and your comment to me. Thanks for your encouragement to me…I pray for your complete recovery.
I am having a week of next week from any treatment…I need the break.
My plan is to enjoy some birthdays…my son June 4, mine June 6 and my daughter June 8. I think we will be having some other family members join us for celebrating both the birthdays and my week off.
I have been having treatments once a week sense Sept. 24, 2008. I did have 15 treatments of radiation, but stopped it…I could hardly swallow water my mouth was so sore from radiation. I had 15 more treatments to go, but my life was so upside down and I felt so depressed…called some of my family in to talk over the treatments with them. They all supported my decision to stop…my chemo doctor was on vacation and the radiation doctor was on vacation. When I saw my chemo doctor, I could hardly talk (laryngitis), inside of mouth & tongue burnt from radiation. He felt so bad and started treatment right away for thrush and ease the burning in mouth.
That was at the end of Oct. 2008 that I stopped radiation. It took several months to clear up. I still have some mouth soreness from chemo treatments & other non-chemo intravenous meds. I have a hard time eating any type of food that is not soft…I have to make sure I chew well.
I will have another PET scan June 19…that will let us know how the cancer is doing and if able to stop treatment. My doctor is anxious to see how the scan goes, Me too.
I hope I have not taken up too much of your space here on this message board.
Again, thanks for your good wishes. You are in my prayers.
Hugs…Patti
May 29, 2009 at 8:58 pm
Patti
Rae…I wanted to say that I have lost weight during this time period…so far 80 lbs. Not the best way to lose weight, but I feel better. I do need to tone up my sagging arms, etc.
Have gone from 22-24 X to 16 Misses and X-Large Misses. I had to buy new pants, underwear and bras. I had several smaller tops put away in a closet…thank goodness, I think for my daughter to use when she visited.
Just a little update.
Hugs…Patti
August 14, 2009 at 4:45 am
Cackle
Way to go Rae!!! Sleep like a baby tonight, you deserve to
August 14, 2009 at 7:50 am
Sherry a/k/a Krestiekrew
Hey gal,
so glad to hear that positive attitude still there….and just glad to hear (read) from you period.
I won’t go into a bunch here but lots of hugs and tons of prayers your way. I know you can’t get on the groups like you did but we all miss you.
August 14, 2009 at 11:40 am
Naia
Aloha nui loa…just wanted to check in with you. Miss ya!
August 14, 2009 at 3:12 pm
Tess
Just read the latest update and i am thrilled for you!
lots of hugs to you dear Rae.
Tess xoxo
August 16, 2009 at 1:03 am
Katra
Thank God! I have the biggest smile on my face right now, way to go girl!!
xxxxxxxxxxxxxx
August 16, 2009 at 8:46 am
Patches
Hey Ra-aaaae? About that ‘animal house toga party’ thing? That’s the best idea I’ve heard in a long time … count me in!
Oh, and happy belated anniversary! ☼ Today is my birthday and anniversary .. figured if I got married on my birthday that there’d be less chance of hubby forgetting it. Bwahahaaaaa.
Love ya, girlie! ♥
xox
August 31, 2009 at 5:25 pm
FeistyRedhead
Sending thoughts and prayers your way.
Hugs!
Feisty
September 1, 2009 at 6:10 am
Dorothy
Hi Rae, been ages since I could find you and so glad to hear the news. I think of you often and think good thoughts for you. I am so sorry I didn’t get in touch sooner, keep up the good work
Love
Dorothy
September 3, 2009 at 3:49 pm
Sherry747
GREAT NEWS
(There have been no new tumors for a year!! Stability for so long..wow.. Dr Jazz is all puffed up and so are Bruce and I!)
I am so pleased to read/hear this…. you are one tough cookie,,and I love your outlook on this.
Stay strong and remember many are praying for you eachday..
((((( HUGS )))))
September 14, 2009 at 3:21 pm
Cathy
Dear Rae…
It’s been a little while since I visited your site and blog, but I’m so glad I did today! What a blessing to see that you are stable!!! I can empathize with you…though I think what you’re going through is much more difficult than what I am going through. I have breast cancer and am having chemo now. I’ll have radiation after that. The side effects are not pleasant, but lessen after a few days. I’m almost a baldy now, too!
I just wanted you to know you are in my thoughts and prayers!!! You are inspirational!!!!!!!
Hugs,
Cathy
September 23, 2009 at 12:08 pm
Rosebeenut
rae – just wanted to pop in and tell you that I’ve been thinking of you and tell you that I think you’re amazing. God Bless.
Big huge hugs to you.
Rose
October 7, 2009 at 6:09 pm
Starrr
Hello Rae, you won’t know me, but I have done several of your tuts and always admired your work. I have read your story with tears in my eyes for all you have gone through and admire your bravery and positive attitude to this horrible disease.
I had non-Hodgkins Lymphoma over 3 yrs ago and my chemo was as nothing compared to what you have undergone. I am in remission now, but live to fight another day and hope, that in time, cancer is eradicated from all our lives. Keep on being as strong as you are and an inspiration to others. I shall keep you in my thoughts and prayers. God bless, keep well.
Big hugs, Starrr xxxxxxx
October 12, 2009 at 3:43 am
Sherry a/k/a Sass
Rae, Girl you blew my socks off today — it was such a huge relief to see you on MSN today. You have been on my mind for a long time — now I can rest a little easier.
I’ve missed so much of what you’ve gone through, due to a pc crash early 2008 and just getting back on line in jan of this year.
I couldn’t find you anywhere cause i’d lost all of my contacts.
But thank goodness for IM and timing today — now you keen in touch — anytime you need to talk, I’m usually on line all night – just knock. You’ve got my number if you perfer to talk on the phone.
I’ve been to your tut site and I’ve got them all — now I’ll be busy doing some tuts again.
Remember what we chatted about — you hang in there.
All my love to you and Bruce…………………GateKeeper
November 1, 2009 at 2:40 am
Betty aka DuckyJazz
Hi rae…..happened upon your blog tonight and have read every word of it.
You have been on my mind so much lately. I used the tag “Nevermore” in a stationary that I did for a class a few months ago and was wondering how you are doing.
Then today I made a base tag from a animation someone had posted and was later told the falling stars are from your tutorial Starfrost. I went to the tut site and sure enough it’s your falling stars. I apologize for that as I remember how you felt over the your little bird that was tubed .
Keeping you in my prayers
Hugs, Ducky
November 7, 2009 at 9:13 am
tess
Dear Rae.I know November time is your check up time.
I am wishing you good news and blowing kisses.
Big hugs
Tess xoxo
November 7, 2009 at 1:20 pm
Margie
Good Luck Rae with your next CT Scan !
Prayers are coming you way !
Hugs, Margie
November 8, 2009 at 12:19 pm
Krestiekrew
TYVM! I will be waiting to hear after the 17th and the follow up visit… Love ya gal… hang in there.
November 8, 2009 at 2:43 pm
may
yay! i am so glad to hear the good news. will be waiting to hear from your next appt.
i don’t stop in here often enough and i am sorry for that but i think of you each day and keep you in my prayers.
keep on kicking!
November 8, 2009 at 2:45 pm
Patches
Hey Rae! Haven’t heard from you in awhile .. how goes the bloody battle? Just want you to know that, you’re in my thoughts and in my heart. Lotsa love, Patches. xox
November 8, 2009 at 3:02 pm
Margie
Rae, nobody is even thinking about new tut’s !
We all want you to get better or stay in remision !
Happy to hear from you !
Hugs, Margie
November 8, 2009 at 3:42 pm
Pam
Rae.. lots of prayers are being sent your way.. you have been such a fighter..
November 9, 2009 at 11:13 am
Maire
Rae…i can only imagine the hell you have been going through.. this blog was not what i expected when i was searching to find out how you have been..i knew you had cancer but had no idea of what kind or how agressive it was.. i have prayed for you ever since i found out and i couldn’t be happier that you have been stabe and no new tumors for a year! I hope you stay in your happy bubble and never leave it… you would be amazed at what mind over matter can accomplish.. and i am sure that your happy bubble has done as much good as the meds have! Take care Rae and know that i will continue to pray for your full recovery ..God Bless….~warmest wishes with huge hugssss~ Maire
November 9, 2009 at 11:20 am
Dorothy
Hi Rae, so glad to hear from you, not a day goes by I don’t think of you and send you good wishes, I am always glad to hear from you, you have shared so much of your talent with all of us
Dorothy
November 11, 2009 at 12:12 am
Terri
Hey Rae, I’ve missed hearing from you and you have been on my mind sooo much lately! Hope all is going well for you. You are in my thoughts and prayers. God speed!
Terri
November 17, 2009 at 1:31 pm
Margie
This is your week of the 17th !
Waiting patiently to hear from you !
Prayers are with you !
Hugs, Margie
November 17, 2009 at 1:56 pm
Dorothy
I’m with Margie………waiting to hear good news
Dorothy
November 17, 2009 at 2:13 pm
Cathy
Sending out prayers for you! Today is the 17th! Tomorrow I have my 6th and last chemo (carboplatin and taxotere).
Huge Hugs,
Cathy
November 17, 2009 at 4:10 pm
Naia
Thots and Prayers. Waiting the good news with the rest of the girls.
me ke aloha, Naia
November 23, 2009 at 2:50 pm
Margie
Rae, this is an outstanding report !
I am so happy for you and hubby !
It is wonderful you have so much trust in you Dr.
Have a special Thanksgiving in more ways than one !
Hugs,
Your friend Margie
November 23, 2009 at 4:10 pm
Patches
{{{{Rae!}}}
Dang it, I keep forgetting to look ‘up’ for your posts and nearly missed your fantastic news. Yayyyyy, for you, girl! That’s a wonderful report and I hope it keeps on being wonderful.
You know, I truly believe you can live with this in limbo, for a good long time to come. Give yourself a pat on the back and keep that amazingly strong mind of yours working overtime .. it’s working!
Lotsa love and big hugs,
Patches xox
November 23, 2009 at 9:20 pm
Krestiekrew
O_M_G!!!!! I am so happy for you….I missed the post when you did it cause ….LOL!! I spent the night in the ER and nuts the next day…per my usual. If I could I would give you one huge happy hug my girl. and well, err ended right back in the dr office today. told them just to make me a room over there for a short and it would just save us all a lot of problems temporarily.. doc said he just didn’t have a spare closet right now.
I know you are waaaay up there somewhere on a cloud dancing your heart out right now.. LOL!! what a head pic that brought on… could just get a glimps of you streaking thru the stars and jumping on a big ol fluffy cloud to whirl around and round.
November 24, 2009 at 5:45 am
Dorothy
Rae,this is great news, sometimes the mind heals all, you are a real trouper. My good thoughts are always with you
Dorothy
November 24, 2009 at 10:07 am
Cathy
So happy for your good report, Rae!!! Keeping you in my thoughts and prayers!!!
Hugs,
Cathy
November 24, 2009 at 1:30 pm
Betty aka DuckyJazz
rae….that is wonderful news, best I heard in a long time.
Keep the faith and wishing you a “Happy Thanksgiving”
Betty aka DuckyJazz
November 29, 2009 at 9:45 am
tess
What wonderful news dear Rae.
Hope you have a great Xmas and a very Happy new year.
My love and best wishes to you.
Big hugs
Tess xoxo
December 28, 2009 at 11:22 pm
Gabby
Hi Rae,
I’m glad to read some good news, this is my second post on your blog, my first one was a few months ago when I found out about your battle.
But this one is just to let you know that you are not alone, and that it is your battle right now but someone else could fight it for you if you let Him: God.
Please read in your bible the second book of Chronicles chapters 19 and 20, and make it HIS battle…just like King Jehoshaphat did.
God bless you, you’re in my prayers!
Gabby
January 4, 2010 at 9:03 pm
Cathy
I agree with you, Rae! I don’t want to hear ANY of those choice comments! I’m scared enough…encourage me…don’t fluff me off with a comment like that.
So good to see you in here. Sending you big warm hugs!
Gabby…I am going to check 2 Chronicles right now!
Hugs,
Cathy
January 4, 2010 at 9:19 pm
Margie
I honestly love your so called rants Rae !
They are not rants to me !
Just a real person, telling her real feelings as you always do !
You keep right on, right on sista !
xo xo Margie
January 4, 2010 at 10:24 pm
Sherry a/k/a Krestiekrew
Hey gal, rant on because …. rant = Rae is ok, still got a ‘temper’. So just let it fly.
I hate peeps with those comments … only I have a different term for it… asinine remarks from anal retentives! … and ya can tell ‘em I said that is what they are. Now you know I can’t put the rest of it on your blog, I would get reprimanded (sp) ..rofl. But I know you got an imagination and all I can say is use it, you know me well enough to get a mental pic…
I have tried to keep you in a few laughs, pics and yummy things hope they either helped or you enjoyed. I was too happy and excited for words when you jumped up on the porch btw… and had my fat rear been able I woulda gotten out of this puter chair and done a happy dance..just so you know.
OK.. enuf already I will be waiting on the next update… like when you get back home????
tons of huggs to you.
February 5, 2010 at 7:29 am
Robyn
geez i cant imagine a doctor being stupid enough or callous enough to say something like that …
you know how i struggle (now and always) to get the right words to form – verbally and in type (do i even speak english as a native language? who’d know! lol)
but as you say Rae – that intangible thing the rest of us take for granted … that “bulletproofness” … (i’m always thinking my boys think they are bulletproof – things WONT happen to them) … life … LIFE happens .. SHIT happens – and i just hope that if / when it should happen in my life i can deal with it / cope with it in the same way both you and Garfie have – head up, smile on and sense of humour intact
may not be around much these days but i’m thinking of you always
hope you got my email the other day – saw BugBurp tut being highlighted in an animations group – and some great compliments to your tutorials
(no surprise to me!)
Robyn aka crimson
February 5, 2010 at 11:14 am
Patches
I’d like to be a fly on the wall when Garfie’s doctor meets his fate … I’ll bet he won’t be so flippant or callous then.
Meanwhile, back at the OK corral, it’s so good to ‘hear’ your voice, Rae … miss ya … love ya!
Patches
xox
February 17, 2010 at 12:18 am
Robyn aka crimson
in that great aussie accent of mine – bugger! and once again in my new zealand accent too! (and may the censorship fairy turn a blind eye
always keeping you in my thoughts Rae and always always positive thoughts and prayers for you especially today as you have your scan and
hopefully are able to start on the dragon slaying chemo!
(((big hugs))) is what i really want to give you but im just way too far away!
Robyn x
February 17, 2010 at 12:54 am
Sherry a/k/a Krestiekrew
Rae…. I am speechless… sort of …at the moment..
I just found your post and read the good and the bad. Your strength is amazing my girl, and that is what has kept putting the ‘Beast’ down time after time so don’t lose it and don’t lose the faith either. You are without a doubt the strongest person I have ever had the pleasure to know, and times when I have had to find some myself, I run over here and read your posts to be able to gather my own up.
I am here, you know how to get me… anytime – day or nite. And I will be waiting to hear how your scan went this am, and to see if you get to start the chemo …. I am here with hugs, prayers, good thoughts and good vibes to send your way. I am headed to the porch now to make sure you get TONS of all of that from your friends there.
February 17, 2010 at 1:02 am
Naia
rae, I’m sending all the good caring spirits to you as you endure yet more of this nasty beast. I so admire your courage. Keep up the fight. I’ll stand with you anytime. me ke aloha, Naia
February 17, 2010 at 2:16 am
MollyG
Rae, glad you feel comfortable enough to rant here. I think you are right that many people just don’t know what to say and end up saying the wrong thing. Your advice is well taken.
I’m so sorry to read the beast has awakened. I’m sending strong, courageous, healing thoughts to you. Stay positive and slay that beast!
Hugs,
MollyG
February 17, 2010 at 2:18 am
Lynne
Stay strong dear lady.
Your determination and sheer will power is amazing.
Sending Prayers, hugs, and very strong positive vibes your way.
February 17, 2010 at 4:45 am
Pam
Always you are in my prayers.. It just sucks that this is happening to you
February 17, 2010 at 5:36 am
Mark
Hey Rae,
You got a lot of people thinking about you and praying for you. Glad to see your still fighting IT and hope that you pull through this latest battle. Stay positive girl.. You are an inspiration to many..
Now I know where this is I shall check back regularlly..
Sendng a big hug your way…
Mark
February 17, 2010 at 7:11 am
kath
Rae,
My thoughts and prayers are with you this A.M. and always, you are a very special lady and truly an inspiration…Keep fighting girl as you have alot of friends here who are standing and fighting right beside you …
Many hugs
~kath~
February 17, 2010 at 7:14 am
CarolJustCarol
I’m thinking about you, praying for you and sending you all the good vibes that I can wrap up in a beautiful package of admiration, love and best wishes. Take care of yourself. We all care about you.
February 17, 2010 at 9:36 am
RoyeBeth
Rae you’re in my thoughts and prayers and praying that your heart is as strong as your Will so you will be able to continue with treatment and slay the beast once and for all!
Sending healing loving thoughts and prayers.
hug,
Beth
February 17, 2010 at 9:39 am
ANN ADAMS
Rae, so glad you are still fighting and keeping your ever positive attitude. Please know (and hope it helps) that we all care and that you are in our prayers.
Sending mega hugs too.
Ann
February 17, 2010 at 9:49 am
Patti
Rae, Just wanted to let you know that you are in my prayers. I am praying the beast will flee from your body and the strength of God keep you strong. EWE
February 17, 2010 at 10:00 am
Cathy
Dear Rae…
That dang beast!!! I am sending you warm hugs, positive thoughts, and precious prayers as you embark on another battle with IT. I am confident you will knock IT down once again! I’ll be checking back later as I’m anxious that you’ll have begun chemo!
HUGE HUGS,
Cathy
February 17, 2010 at 10:17 am
Betty aka DuckyJazz
Rae,
I’m so sorry to hear you have to do this battle again, sending only positive thoughts and saying healing prayers for you.
Keep fighting the beast and take him down again.
Hugs, Betty
February 17, 2010 at 10:28 am
Dorothy
So sorry to hear you have another battle on your hands, I am thinking good thoughts and saying good prayers for you
Big hugs
Dorothy
February 17, 2010 at 10:38 am
Patches
Dear {{{{Rae}}}}
I’d like to give that dragon a good swift kick in the arse, boot it straight to hell where it belongs! Yeah!!!!
Thinking of you this morning and sending you the strongest vibes I can … praying that you’re strong enough for chemo, so it can help you to kick the livin’ schnit outa that dastardly dragon.
Hugs and love,
Patches xox
February 17, 2010 at 10:39 am
Katra
Hey Kiddo
You just show “It” who is the boss, I am thinking of you all the way and every day!
Positive thoughts and prayers winging their way to you.
Loads of love
Katra
xxxxxxx
February 17, 2010 at 12:11 pm
Pammaw
Rae, My heart goes out to you and this battle that you are fighting. You are loved by many in the psp community, I will say prayer for you to give you the strength to continue to fight. Love and Hugs, Pam
February 17, 2010 at 3:04 pm
JuneHoney
Hello Rae♥ I can’t say any more than what has been said by everyone. I can only promise you this, it comes from my heart. This evil “IT” that has invaded your body will lose. Each and every one of your friends are praying hard for you and God hears us. Prayers are very strong and we shower you with our deep prayers everyday. You keep fighting and soon you will be clean from this thing. We are all here for you….
June ♥
February 17, 2010 at 7:22 pm
Pat
I can’t imagine your “beast” standing up to the massive crowd of friends who have rallied to vanquish it. That along with your strength, faith, and positive thinking will do wonders. Each of us is sending our love and prayers as you have your next round of chemo. We are all there holding your hand, and will never let go.
Huge hugs, sweetie!
Pat
February 17, 2010 at 8:28 pm
Sherry - KrestieKrew
You go girl….fight like hell! … (so ya caught me) I will always bring you the porch for support, and they will always answer my call.. bugle??? nah, at the moment it was more like a panic mode screeching siren in rush mode.
Thanks for the update and being so kind as to let us know what you are facing… I for one will be there with you even if it is just in thought only, and I am sure the other Rockers feel the same. I know the treatment is gonna make you feel rough but the end result is what you are after.
btw, sent u a piece of info via another route, I imagine you have it by now.
huggs, good thoughts, good vibes, and lots of prayers from me.
February 17, 2010 at 9:07 pm
Janice
Rae ~ I will be keeping you in my prayers and sending many positive thoughts and vibes your way. Cancer is a mean beast…but the prayers of friends can work many miracles and you have many people sending those prayers for you. Just feel the love from all of us…being positive is your greatest weapon.
Hugs,
Janice
February 17, 2010 at 9:21 pm
Patches
Rae, way to go, getting him to move up the CT scan to a month and a half; much better than waiting for three months .. you’d be a basket case by then.
Thank gawd, you’re aggressive and knowledgeable and can shake things (and Dr. Jazz) up a tad. You GO, girl!
Lotsa love and big hugs,
Patches
xox
February 18, 2010 at 6:48 am
YorkiesFour
God Bless you Rae!!!! You know we are all thinking of you and sending positive thoughts your way. That damn beast causes such a roller coaster ride in our lives, but you are strong and have the right attitude to face the monster and slay that bad boy. Know that we are all standing there with you and sending up major prayers in your behalf. ♥♥♥♥♥♥♥
Sandy aka YorkiesFour
February 18, 2010 at 7:27 am
Lynn
Hi Rae
As is so usual for the internet we dont “know” people as in face to face meeting, but we have lots and lots of online friends.
Your attitude is good even at times it must be very hard.
Your friends online and “real” are praying for you and you are in my thoughts every day
lots of hugs for you
hugs Lynn
February 18, 2010 at 9:07 am
RoyeBeth
WooHoo!! I’m so happy that your heart is as strong as you are ;o). And I’m so impressed with you asking the right questions as well as asking for what you need. I totally agree with you that you should go after every option that is available to you to destroy this beast, give it to IT from every angle!!
Thank you so much for letting us know how the scan went, you must know we were all so anxious to hear.
Keep up your fantastic attitude and know we’re keeping you in our thoughts and hearts♥.
hug,
Beth
February 18, 2010 at 10:34 am
Carol
Popping in to send you prayers and hugs and good positive vibes!!!!!! IT should be very afraid of your friends – just the magnitude and shear force of your friends’ support and love should have it running for the hills!!
Hugs and prayers!!
February 18, 2010 at 2:12 pm
Linda
Positive thoughts and prayers are being sent your way! You’ve touched many lives and made many friends! We’re here for you and wishing you all the best!!
February 18, 2010 at 6:47 pm
Margie
Rae, so happy to hear you got the CT Scan moved up !
You sure know what you are doing to get things going faster !
Prayers and all the Best of Happy Thoughts are coming your way !
I am so glad you are in back in your fight mode !
Hugs,
Margie
February 18, 2010 at 7:00 pm
Pauline
Hello Rae, I am Pauline, a fellow Rocker on the Front Porch – so nice to meet you. I often wonder what I would do, given a cancer diagnosis. Would I fight or just give in. The time one has left is just so filled with doctor and treatment appointments, hospital stays and some painful procedures. But now, after reading your blog, I think that when one has the beast descend upon them, our natural instinct is to fight IT….. and there are victories along the way. Thank you for sharing your journey with us. May the Lord bless and keep you. May the Lord shine His light upon you and be gracious unto you. May the Lord grant you His peace. What a beautiful person you are.
February 18, 2010 at 9:22 pm
Geri Litz
My thoughts are always with you Rae.May God send his special angel to watch over you.God Bless.
Geri
February 19, 2010 at 2:32 am
Cathy A.
Rae,
I am keeping you in my thoughts and sending prayers your way as you continue your fight against this horrible beast. Your positive attitude is truly an inspiration and I wish only the best for you. Take care.
Cathy A.
February 19, 2010 at 3:00 am
may
Just a short note to say you and your family continue on in my prayers. lots of love and hugs.
God bless always,
may
February 19, 2010 at 10:20 am
Joni
Rae….I can only hope that given such a fierce challenge as you’ve been facing these past years, that I can be as strong, courageous and inspiring as you’ve been. You are truly a beautiful person and the outpouring of support here shows just how loved and admired you are. You and your family are in my thoughts and prayers and I am sending all the good thoughts and positive vibes straight thru to you.
I’m glad you got to catch up on ‘LOST’ via the internet…how do you think it will all turn out? Isn’t it just all so mind-boggling….I luv it, lol!!
February 19, 2010 at 4:44 pm
Pam
Rae it is us that are blessed and humbled to have had you in our PSP world and now to share your in your inspiring outlook on your battle ..you truly are an inspiration in everything i have seen you do.
February 20, 2010 at 6:13 am
Sunandfish
Rae, you have been in my thoughts and prayers ever since we first heard what you were going through. May you stay positive and keep fighting this! I pray for the day that you hear the words…It’s gone.
A big hug to you, Rae!
February 21, 2010 at 12:56 am
Joanne
Rae, my thoughts and prayers are with you. Keep on keeping on. You are an amazing person and you ae an inpiration not just now but always.
Much love and many hugs. God bless.
February 21, 2010 at 7:15 am
Lloyd
Hi Rae! I`m always thinking about you; wondering how you are doing. You are always in my thoughts and prayers.
I have a binder full of your printed tuts. and I`m constantly referring to them, when looking for ways of doing something; thinking I bet Rae had a way of doing this.
God bless you. Keep up the good fight.
Take care
Lloyd
February 22, 2010 at 9:58 pm
Pam-Legs
Your in my thought’s and prayers Rae..Keep fighting
Hugs Pam
February 23, 2010 at 4:15 am
June
Rae you are an inspiration – such strength in facing the Beast. I also believe in the power of prayer and reading all the wonderful supportive messages here I know so many prayers and good thoughts are being offered up for you. I wish I knew you personally – you would be a treasured friend to have I am sure. Stay in your Happy Bubble.
God Bless.
June.
February 23, 2010 at 6:22 am
KerryAnne
Hi Rae…I have followed your journalling and think of you often. You’re such a brave and giving person and i send you tons of positive, healing thoughts. I will keeping you in my prayers…keep hanging in there hun.
Hugs, KerryAnne xx
February 23, 2010 at 8:44 am
Jane
Hi Rae – I too have been following your posts. You are in my thoughts and prayers daily. You have given me so much strength – I went through breast cancer this past year and feel blessed by my experience – but mostly because of strong women like you and such caring professionals whom I dealt with. It has been an amazing experience. I pray you will find peace, remain strong and most importantly ‘slay that damn dragon’! God bless you! Hugs, Jane
February 23, 2010 at 3:22 pm
shayne
Hi Rae.
You and yours are in my thouughts and prayers everyday.
We are the humble to have had you share your rare talent with us.
Keep up the fight as your fighting spirit is truely amazing.
God Bless and God Speed!!!
Shayne
February 25, 2010 at 6:52 am
Janice (Carolinaschnauzer)
Rae ~ Just wanted you to know that I’m thinking of you and will continue to remember you in my prayers. Stay positive and know you have LOTS of friends praying for you. ♥
February 25, 2010 at 10:11 am
Patches
Aw, Rae .. if only we had more power, we’d whisk that dragon to hell and gone instantly!
Lotsa love and hig hugs,
Patches xox
February 27, 2010 at 9:42 am
Ange
Hi ta Rae,
Ijust wanted you yo know that you are in y thoughts and prayers.
You have had such strngth, corage and been so posative you make me feel humble.
I will continue to send healing thoughts for you and keep you in my prayers.
February 27, 2010 at 1:04 pm
Sherry a/k/a Krestiekrew
I know you are tired and the chemo can put the best laid plans on the waiting list… hopefully the side effects will not be so bad after a while but from what you had described on this round of it I figured it might pretty well wipe you out on the energy level.. so you just do what you need to do, conserve your strength for the battle and hang in. I know you will get to us when you can muster the energy to do it.
woulda posted sooner but the ole PTSD had kicked in pretty hard…. LOL!! wore the ER out about 3 times and OMG… LOL!! will have to tell you about the 4th trip later.. can’t put it here.
just update us when you can…huggs, prayers, good vibes and all the rest gal…
February 27, 2010 at 1:44 pm
Sharon
Dear Rae, Thank you for sharing your story. Hoping and praying that the IT beast will be destroyed or at the very least sent into permanent exile! May the Lord bless and keep you and your loved ones always. love and hugs, Sharon
February 27, 2010 at 3:44 pm
Pam
Still sending all the good vibes and thoughts that i can your way..
February 28, 2010 at 2:02 am
Candy Hearts
Rae …. I am praying for you. I think about Jesus, when He lived on this earth as a man … he went about healing people, and doing good. He is still alive, and doing the same. I know for a fact that He hears and answers prayers.
God Bless You!
Candy
March 1, 2010 at 10:52 am
Patti
Rae, You are continually in my prayers. May God give you comfort and strength as you face each day. HUGS,EWE
March 7, 2010 at 2:28 am
Cackle
Hi Rae,
I’m glad to read that you are fighting this stinkin’ disease with all your might. I think of you often as I go about my day, Hugs and best wishes to you and your family.
March 11, 2010 at 3:44 pm
tess
Dear Rae.
Sorry you have had to go another round of chemo.
I wish you all the very best my friend and know you will continue to fight IT
Wish i was there to give you a hug in person!
((((hugs))))
Tess xoxo
March 17, 2010 at 1:07 am
Robyn aka crimson
Hi Rae
((((((((((gentle hugs))))))))) its the 17th here – almost done for the day at the office … thinking of you and the day ahead
orange? who knew! and i vote for Green too for St Paddy’s Day!
oh and hey! i belong to a group that shares links for tuts and i have been thrilled to see some great examples of your tuts coming through and u know it gives me a buzz just like it does you
great memories attached with each and every one but Soap Bubble tut still is my absolute fav cos its how we first started yakking 
love & hugs to you Rae!
Robyn
March 17, 2010 at 9:18 am
Patches
Hey {{{Rae}}}
They didn’t turn your chemo muddy blue today did they? LOL. I’m hoping that, being associated with the doc who let the study, Dr. Jazz can get you on the fast track for that new drug. Keeping my fingers crossed for you, girlie.
Lotsa love and big hugs,
Patches xox
March 17, 2010 at 9:37 am
Cathy
I had my weekly chemo yesterday, Rae, and YOU are in my thoughts and prayers today as you undergo yours!!! Hoping it goes well! Are you taking Adriamycin? HAPPY ST. PATRICK’S DAY!!!
Love and Hugs,
Cathy Go Braugless
March 17, 2010 at 8:26 pm
Sherry a/k/a KrestieKrew
Happy Green Day!! I hope what you find from the trial drug is something wonderful. Glad you are holding your own with the chemo and it isn’t terribly rough on you this time. I think about you lots, send a LOL or two. It is crazy around here right now.
My boys are singing the blues … no more explination needed right?
My doc has insisted that Smiley be with me everywhere I go now due to the erratic sugar drops and so fast when they do drop!… so she is getting outfitted and ‘patched’ on her vest per my doc as a service dog! Now she alerts me and sits with a ‘stare’ til I check with the kit and get food, if I don’t move fast enough to suit her.. she almost takes the skin off my leg to make me get up when she sees I have food, she goes her own merry little doggie way til the next time!
Huggs and more huggs and prayers and good thoughts my friend….
April 6, 2010 at 5:50 pm
Margie
Hi Ya Rae, I hope you had a nice Easter !
I think of you everyday and send my prayers your way !
Hoping to hear from you soon !
I sure enjoyed watching the pups, they were a tonic !
xo xo Margie
April 8, 2010 at 5:25 pm
Lil Dymun
Keep fighting have having hope. I am praying you will sirvive IT.
April 16, 2010 at 2:02 am
krestiekrew
oops, I am a little belated catching up here, my wireless device went down and had to send it back for a replacement so have not been back up and running with it but a few days and then got me meds screwed up and that has knocked me down for a few days but today got all more or less back on schedule so hopefully I will feel human again in a couple of days. (more to it but not for blog, will email you soon).
I am so glad at least all has come to a halt to give you time for planning an attack on it again. I get this picture in my head of ‘you are the general rounding up the troops (doctors) and giving orders to FIND SOMETHING! Hang in there gal, you have more fight than anyone I have ever known, I wish I had just half of whatever it is you seemed to grab out of thin air and go with it when needed. You amaze me.
…. my little service (nurse) dog is just working her little heart out for me, never misses a beat and I finally got her vest and patches in (sent you pix of her.. or I think I did) and how she knows I have no idea but when the vest goes on her demeanor seems to change and she is ready to go and be vigilant for me.
OK gal, til next time so here is a big Hooray for the standstill and a hug for good luck….
Sherry
April 16, 2010 at 5:48 am
kath
rae,
Happy to hear it has come to a halt , at least you have enuff time now to get together your next plan…we all keep you in our thoughts on the Porch and remember …Miracles sometimes happen..
Thought and prayers will be continued ..
hugz kath
April 16, 2010 at 8:46 am
Margie
Wonderful news Rae !
Whatever is being done now is stopping the growth !
I am so happy for you !
You are in my prayers !
xo xo Margie
April 16, 2010 at 10:22 am
Naia
Blessed Be! Good news! You are always in my prayers.
me ke aloha, Naia
April 16, 2010 at 1:59 pm
JuneHoney
Hello to you Rae, happy to hear this news. You and your great family are in our prayers. Stay strong and know we are here praying for you. June
April 16, 2010 at 3:01 pm
Pam
I hope each and everyday we hear only good news about you..
April 16, 2010 at 8:11 pm
Cathy
OMGosh, Rae!!! SOOOO glad to read your good news! I’m happy the monster has been prevented from growing! I look forward to your next update!!! Keeping you in thought and prayer constantly!!!!!!!
Hugs,
Cathy
April 18, 2010 at 6:01 am
MollyG
Rae, this is wonderful news. You are such a warrior and one of my heroes in life. March on, woman. My thoughts are with you.
Hugs,
MollyG
April 18, 2010 at 12:15 pm
Sharon
Just dropped in to see you. Great news about the lack of new growth! Prayers that Dr Attia will be able to help even more. Very best thoughts and hopes for your healing. Sharon
April 22, 2010 at 6:39 pm
Scoot
Hiya Rae! Finally getting my rear in gear and dropping off some love and hugs. I can’t say more than has already been said; you are an amazing woman! Years ago, my mom developed uterine sarcoma…no treatment at that time except for surgery. Two lears later, it returned in her lungs. The FDA had just approved a new very harsh chemo, and Mom was 78 at the time, but she went for it. She was able to see her youngest get married, and lived to be 80 when she passed peacefully during a nap. The dragon did not get her. There is always hope!
Prayers heading your way!
Hugs,
Scoot….AKA Marlene
April 27, 2010 at 3:04 pm
Sherry a/k/a Krestiekrew
helloooooo….
just checking for a new update, hope all is ok and no news is good news and all that stuff… guess I will patiently wait until you feel like posting again and just keep on sending good thoughts and prayers your way.
tons of hugs
Sherry
May 9, 2010 at 5:02 am
Sherry a/k/a krestiekrew
Sounds like great news….even with the skin problems, or would that be a permanent tan? LOL!! I know the chemo must be hard on you at times if not every time.
All I can say is I wish some of your ‘guts’ would filter down my way…just had a mamogram in Nov, found lump several weeks ago see doc this coming week but they didn’t seem too concerned after asking bunches of questions about it when I called but are going to check it out at this reg appt.
OK… glad to hear positive news from you and keep us updated please… and hugs and prayers headed your way all the time.
May 9, 2010 at 7:29 am
Energie
Rae, This is wonderful news!
You’re always in my thoughts and prayers.
Hugs, Energie
May 9, 2010 at 8:08 am
Patches
“sometimes, it resolves itself.” Ah ha haaaa. Remind me not to take my heart problems to that one, Rae.
Sounds like Dr. Bailey knows what he’s doing though and has confidence in Dr. Jazz … good news for you. I know that it makes me feel better for you.
It’s so good to hear you ‘up,’ my half-tanned friend and ……um …… half-tanned is a lot better than half-assed, by the way. Bwahahaaa.
Lotsa love and big hugs, Rae
Patches xox
May 9, 2010 at 10:11 am
Joni
Good Morning Rae! Was happy to be reading that the chemo is working wonders! Sucks about staying away from the sunshine but when I read your blogs you are like your own little Rae of Sunshine with your strength and witty words even in your trying times! Wishing you the best hun…and just wanted you to know that you are still in my thoughts and prayers…xo
May 9, 2010 at 7:43 pm
Cathy
Glad your confidence is back up, Rae! Hurray chemo!!! It might not be fun to deal with…but I’m glad it’s battling that dam*ed monster!!!
Big Hugs,
Cathy
June 9, 2010 at 10:09 am
Margie
Hi Rae, thinking of you and wondering how you are doing !
Hopefully all is going well !
Hugs, Margie
June 30, 2010 at 1:55 pm
SCAPPS
Hi Rae
You are starting to worry me Hon, lets hear some news from you
Katra
XXXXXXX
July 2, 2010 at 8:12 am
Robyn
hi Rae – you’re always in my thoughts
its been a while since we heard from you Rae – trust all is ok
be in touch soon – the echo is deafening :S
Robyn
July 3, 2010 at 1:53 pm
rae
hey…so sorry, Marge, katra, and Robyn!
I have two blogs = one for my family.. and this one
Honestly, I spaced out about updating this one.. chemo-brain, that’s my excuse
)
(..and bonding with a new kitty! ..I’ll have to update the Home page about him
I’m sorry to have worried you! I know what it’s like to follow someone and ..
…they
..simply
..disappear
We all assume some sort of horror has happened..and yeah..I get it ..I’m sorry for that >insert sheepish face here<
For that reason is why I'm so thankful that Katra took over the Hosting of my tut-site and graphics ((katra♥))
)
(how very many tutorial sites have disappeared, over the years?!!… mine won't.. Thanks to Katra
I will have to ask someone to assume responsibility for updating this blog…when the day(s) come..that I'm not able.
I had someone to do that..((garfie ♥))..but she's gone
I've so fallen off the regular channels..not on IM..not in groups.. very sparse emails… so..hmmm
it's not imminent..I hope! (my departure..) ..so I have time to consider and yank at someone's sleeve, to assume that duty
rae gives a side-eye to ((Robyn♥))…. *wink
July 3, 2010 at 7:27 pm
Patches
Aw, Rae, it’s good to hear your voice .. so to speak.
A new kitty? What’s his name .. does he know it yet? lol
Big hugs and lotsa love,
Patches
xox
July 4, 2010 at 7:10 am
Cathy
So glad to see you post, Rae!!! I’ve been worrying! Can’t wait to hear about the new kitty…and maybe see pics? LOL
Love,
Cathy
P.S. Keeping you in my thoughts always!!!
July 4, 2010 at 10:01 am
Margie
Hi Rae, great to hear from you and the update !
Wonderful news about the new kitty !
Furbabies do give such comfort !
Hope all the results go well in July !
xo xo Margie
July 4, 2010 at 3:52 pm
rae
hiya’s Patches, Cathy, n Marge
I’ll make it a point to write about my new kitty-boy soon! ..he’s quite the character, I tell ya
check out the blog Homepage..one of these days I’ll have his intro there!
good to see you, each n all
*air kisses*
Ü
July 9, 2010 at 8:52 am
Robyn
a kitty!!
<hmmm guess i'll forgive ya cos i understand how wonderful kitties can be but dont be worrying us again like that missy!
soooooooo details! and piccies! lots of piccies!
and “him” !?!?! what sort of a name is that?!
great to hear from you – but Snuggles and Middy need pics! now! lol
July 10, 2010 at 5:21 pm
Scoo6
HiyaRae!
Just popping in to drop off some hugs, and catch up on the latest. I see you have an upcoming scan, then a visit with De. Jazz. Sending positive vibes your way, hun.
Gentle hugs,
Scoot
July 11, 2010 at 12:56 pm
rae
hey Robyn and Scoot, Patches n Cathy
I keep reminding myself that I need to introduce Melvin.. yeah..his name is Melvin! hahaa..
I mostly call him ‘squeaks or beep-beep’ for how he talks..err, meows.. he ‘beeps’. * quite the talker, this guy
he grows on me more each day..what a character he is
……
..dreading the upcoming scans..*sigh..
keeping myself busy and the anxiety off my mind. Y’know..like we do when we have a gyno checkup? Put off the dread until the feet are in the stirrups
..yup..like that
July 13, 2010 at 7:44 am
shayne
Hey Rae.
Just poping in to catch up on things. Good luck for the next scan hope it brings good news.
Sending mega loads of positive vibes your way.
(((((((BIG HUG))))) to you both. God Bless.
Shayne
July 31, 2010 at 4:41 am
Tess
Dearest Rae,have just read your update.
Glad to hear you so upbeat.
Sending you all my love and biggest hugs
Tess xoxo(((hugs)))
July 31, 2010 at 3:40 pm
Patches
Hiya, Rae!
How’s Melvin .. where did you come up with that name? LOL. Glad he’s fitting in so well and that he’s making you happy.
Hope your next session goes well, too.
Lotsa love and big hugs,
Patches
August 1, 2010 at 8:47 am
Robyn
hi Rae
hope the chemo isnt taking too much out of you – must be about half way through?
keeping you in my thoughts – used your AprilFairy tube today and Hilda recognised your work
I’m sure Melvin’s probably keeping you good company
does he have a good motor? gotta luv a purring kitty
August 1, 2010 at 11:21 am
hilda4jc
miss rae it is soooooooooooooooo good to find you and I have read most of it will re-read again later… I have miss you somethin fierce and I thank you much for all you have taught me… I admire your strength and courage facing what your problem… it is so great to find someone to chat with that can understand what I am now going through… altho I am so much older than you, it seems stramge to be facing this at 80 years of age lolol one big difference tho.. this is still cervical and has not metastasized and not spread yet…. so the Good Lord is still looking out for me… keep in touch will ya miss rae…. and I will try t do the same…love ya miss rae… gbu always hilda
August 15, 2010 at 12:43 am
Scoot
Hi Rae,
You’ve been flitting through my mind, so thought I’d see if there was anything new. I adore the name “Melvin”, and hope he is bringing you much joy. Laughed at the beep – beep
Pets can be so wonderful with their unconditional love and quirky personalities.
I have you in my prayers daily, and was happy to see you check in. Keep us updated when you feel like it….or maybe even if you don’t…we worry a bit.
Gentle hugs,
Scoot
September 4, 2010 at 4:26 pm
Pam
Such a cute cat and what a lucky one finding you..You are in my thoughts often and i hope you know how many hearts you have touched.. stay strong..we all pray for you.
September 9, 2010 at 9:41 am
legs-pam
Awww your cat is very sweet Rae
..I think of you often and sending you healing thoughts and prayer’s.
God Bless Pam
September 9, 2010 at 9:45 am
legs-pam
awww Rae your cat is sweet, i’m sure he gives you much pleasure…I think of you often and hope that you are doing okay..Sending you healing thoughts and prayers.
Big hugs Pam
September 10, 2010 at 7:31 am
Robyn
well jeez :S
you’ve surely had a heck of a week (or almost 2)
i’m sure what you didnt need was all the dis-information
and of course noone ever needs the bad news stuff :S
(((gentle hugs)))) you’re always in my thoughts Rae
hi to Melvin
Robyn x
September 10, 2010 at 8:27 am
Patches
Hiya {{{Rae}}}
Oh, my blood boiled, when I read about your problems with that “Power Woman Rottweiler,” who kept you from seeing the doctor you wanted to see. Grrrrrrr. I’m sure I’ve met her sister … the bitch. Take Melvin along next time … get ‘er, Melvin!
I’m hoping that your meeting with Dr. John Charlson goes well and that you’re accepted into his trial group. Keeping my fingers crossed for you, Rae.
Lotsa love and big hugs,
Patches xox
September 17, 2010 at 2:32 am
Robyn
YAY! fantastic news Rae!
got my fingers, toes, eyes – everything that can be IS crossed!
- makes it hard to do anything but MEH! lol
doing a happy dance for you Rae
just realising its Thursday your time already – (Friday mine) so
thinking good thoughts and telling that Yondelis – sic em rex!
(phrase we use downunder when setting a dog to attack
love & hugs & happy dances
Robyn x
September 17, 2010 at 8:43 am
Patches
You’ve been accepted? Oh, Rae, that’s fantastic! I’m so doggoned happy for you. It’s Friday morning, so I guess you’re still hooked up. How’s it going, girl? Keeping you in my thoughts and prayers, Rae. ♥
Lotsa love and Big Hugs,
Patches
xox
September 17, 2010 at 11:16 am
Naia
Awesome news…I so believe in these trials. They can learn so much from them and be approved treatment so much sooner. I signed up for a diabetis study but didn’t qualify because my meds are working just fine and bringing my A1C down. take care and me ke aloha nui, Naia oxoxox:p
September 25, 2010 at 2:04 am
Robyn
wow – a long couple of days for you :S understanding the ‘holding cell’ thing – i call it cabin fever :S
i bet you’d have seen Bruce move the fastest EVER if you hadnt made it in the other direction
so blood work in a few days – and is the three weeks counted from the blood work?
i’m glad to hear that the staff there are wonderful – it makes it all a little easier to cope with if they are i’m sure
thinking of you Rae
Robyn x
September 25, 2010 at 8:01 am
Patches
Hiya Rae!
After reading your happy update, I’ve been sitting here, thinking of Yondelis coursing through your body zapping all the bad stuff … take that! Take that! Aaannnd … take … that! * 2 thumbs up! *
Also, I’m thankful that everyone associated with Froedtert is so warm and caring .. that’s half the battle right there.
Keeping all my super-chargiest vibes headed your way, Rae. Ya, I know, that’s not a word. So, sue me! Ah ha haaaa.
Lotsa love and Big Hugs,
Patches xox
September 26, 2010 at 8:20 am
Margie
Hi Rae,
The trial sounds so encouraging !
You are always in my thoughts and prayers !
xo xo Margie
September 29, 2010 at 11:55 am
Cathy
The trial you’ve embarked on sounds wonderfully encouraging as do all the staff you’ve been working with! Keeping you in thought and prayer constantly, dear Rae!!!
Huge Hugs,
Cathy
October 16, 2010 at 5:15 pm
Robyn
HI Rae -cant imagine how looooong a day that must feel – I’d be climbing the walls!
Geez girl – i hope the yondelis has kicked in and is kicking azz for you
Always thinking of you
Robyn
October 19, 2010 at 10:07 am
tess
Hey Rae.Gosh i hope this new trial will be a help to you.
You are one brave lady.Sending you love and hugs
Tess xoxo
October 23, 2010 at 8:11 pm
Robyn
OMG Rae! what fantastic news!
Doing a little – no stuff that! I’m doing a HUGE HAPPY DANCE downunder for you!
Go Yondelis! GO GO GO!!
big hugs Rae – cant begin to tell you the size of the grin – and i just know yours has gotta be 100 times the size – your face will be aching with it
Robyn x
October 24, 2010 at 10:37 am
Patches
HIP HIP HOORAY, for Yondelis and Rae!
You’ve made my day!
Not only am I doing the happy dance, but my dog is, too …. as soon as I let out a “Yayyyyyyy, Raaaaae!” she started jumping up and joining in. lol
Now, you’ve got to work on getting that appetite back, my dear.
Lotsa love and big hugs,
Patches xox
October 24, 2010 at 10:52 am
rae
hahaaa! thanks Robyn and Patches..and doggie!!
I’m still in the clouds ..
October 24, 2010 at 11:08 am
Betty
Way to go rae! Keep those clouds floating high.
Happy to hear that something is going right for you.
Hugs, Betty aka DuckyJazz
October 24, 2010 at 1:34 pm
Patches
Thanks, for winding my doggie up, Rae .. she hasn’t settled down since our happy dance. LOL.
xox
October 24, 2010 at 9:25 pm
Cathy
OMGosh!!! I am crying as I read your update!!! LOVED the part about the PA and the party horns…LOL I am SO happy for this good news, Rae!!!
Big Hugs,
Cathy
P.S. I know we had written privately several times…but I must apologize for not keeping up. I think it is my turn to write…
I have lost your address though. DARN!!! Sending more HUGS!!!
October 25, 2010 at 9:22 am
Margie
Rae this is fantastic news !
I can just see you on cloud 9 !
What wonderful news to get after all this waiting !
So happy for you and hubby !
Also Melvin, he needs you too !
October 25, 2010 at 10:09 am
Pam
Rae.. such good news.. i’m so happy for you..and all of us that care about you
October 30, 2010 at 5:04 pm
Jeanne
Rae, just got a message from Sherry (Krestiekrew)–she asked that I tell you “hi” and hopes you are doing well.
I’m happy to see that you are doing well! You are a Warrior!!
October 30, 2010 at 5:06 pm
Jeanne
Rae, after several months I finally heard from Sherry (Krestiekrew)–she asked that I tell you “hi” and hopes you are doing well.
Unfortunately, it sounds like Sherry is not doing as well—
I’m delighted to read your good news–you are a warrior!!!
November 11, 2010 at 8:11 am
Robyn
hi Rae
i hope you know i think you are one amazing woman! i LOVE your strength and your spirit! will be thinking of you tomorrow and hoping the results of the MRI are better news than expected .. and of course that the Yondelis continues to kick butt!!
hugs from Australia
November 11, 2010 at 10:06 am
Cathy
Hoping you get good news on your shoulder, Sweetie!!! Hurray for the Yondelis! Keeping you in thought and prayer always!!!
Hugs,
Cathy
November 16, 2010 at 4:00 pm
Energie
Hi Rae,
It’s almost a year since Garfie pasr away and oh my, I still miss her so!
Hope you got good news of the results of the MRI.
You’re in my thoughts and prayers.
Hugs, Energie
November 24, 2010 at 4:25 am
Robyn
hi Rae
a pox on all ticks i say! she fought very hard but the tick serum just didnt work and in the end it was kinder to let her go 
but i miss her little chats in my mornings … and the space between me and the edge of the bed where she always had to fit in even if there was just an inch left … well it feels oh so wide now :S
glad to hear you are still able to stay on the yondelis and still get zapped
i hear you about melvin & the puking – snuggles gets furballs – and its always puking on the back verandah or steps – just cant do it out in the garden :S thankfully we dont have carpet on the main level of the house so if she doesnt make it outside its only floorboards to clean up
we just recently lost our litle middy – to a tick
still a little raw talking about it – i guess its how we are with our kittykats
love to you – i hope things arent too rough for you over christmas – please chemo – be nice! fight the strong fight but be gentle on our rae!
Robyn
December 1, 2010 at 1:04 am
may b
hi sweetie! been thinking of you although i am a bad bad person. don’t get in here often enough to post and check up.
hmm good and bad news. glad you can stay in the trial. sad you have to get hit with radiation.
i don’t think i could stand not tasting my food. i’m not fat for nothing you know!
love, hugs, and prayers
may
December 1, 2010 at 11:03 am
Patches
Hiya {{{Rae}}}
Keeping my fingers crossed that you can continue with the yondelis .. that’s good stuff!
Lotsa love and big hugs,
Patches xox
December 10, 2010 at 3:27 pm
Robyn
Hi Rae
(its that joyful feeling you have to use it BEFORE you get that first nasty power bill 
reading about those pins & needles has my feet balled up and trying to hide – i have a foot thing :S nobody touches the feet :S and to have them tingling like that all the time must be a little strange – but in the scheme of things not so much huh?
amazing to think of your collarbone regenerating – who knew!
summer has arrived downunder – its hot and humid – thankfully we installed airconditioning this year so are really feeling the benefits already
thinking of you Rae – always
December 10, 2010 at 7:00 pm
Cathy
Dear Rae!!!
I sure can empathize with you on some of your symptoms! I had neuropathy for a good while toward the end of and after my “hard” chemo…and I’m battling a rotator cuff injury right now…LOL Keeping you in my prayers each and every day!!!
Huge Holiday Hugs,
Cathy
December 22, 2010 at 9:22 pm
Robyn
hi Rae! wow! amazing results with the latest scan
congratulations!
Best wishes and love to you this Christmas and for the coming New Year
May 2011 bring more good news along with it and keep those chairs at bay as much as possible
Am over in New Zealand for Christmas with mum and dad and the rest of the family leaving Mark and the boys at home – they’ll be relaxing at the beach on Christmas Day!
((big hugs))
Robyn x
December 22, 2010 at 11:07 pm
Cathy
WONDERFUL news, Rae!!! I think of you often and keep you in my prayers! I hope you have a MERRY, MERRY CHRISTMAS and I hope 2011 only brings more good outcomes from the Yondelis and radiation!!!
Huge Holiday Hugs,
Cathy
December 23, 2010 at 8:43 am
Margie
This is fabulous news Rae ! You sound so uplifted !
What a wonderful Christmas present !
Prayers the tumors will keep shrinking and you
will be in medical history books, giving others hope too !
xo xo Margie
December 23, 2010 at 8:42 pm
Patches
Oh, {{{Rae}}} It does my heart good to hear all your good news! You’ve really made my day, you dear little lady. I can hardly wait for the next round of Yondelis, to zap the hell out of the bad stuff that’s left. Goooooooo, Yondelis!
Have yourselves a Merry little Christmas, Rae. I’ll be thinking of you.
Lotsa love and big hugs,
Patches
xox
December 28, 2010 at 10:33 pm
Scoot
Greetings Rae!
I meant to get back here before Christmas to see how you were doing. My bad, but such wonderful news!! I did go back a ways and read when you did not think you would see snow again, and here we are on the threshold of a new year:) Thank God for trials of drugs that are not yet available in the USA….and that you were eligible. Even if you had to spend Christmas in bed, it is so heartening to read the bad guys are getting significantly smaller.
GBU, gal, and sending prayers your way as well as gentle hugs.
xoxoxo
Scoot
December 31, 2010 at 5:12 pm
Tess
Dear Rae,just read your last entry.So pleased for you.
Wishing you all the very very best for 2011!
Love and tender hugs
Tess xoxo
April 15, 2011 at 1:12 pm
may yang
was just running my mind when you wandered across it as usual and thought i woud pop in ot see if there was anything new.
i hope you have a great easter and the bunny comes by with some good gifts for you!
hope you we’re safe and cozy with that nasty storm and tornado sightings last weekend.
take care my friend and talk to ya later.
hugs,
may
May 13, 2011 at 9:22 am
Anon
you should be aware that Twitter user @SophsKnox has been using your photograph from your October 22, 2008 post in a blog written earlier this year claiming it to be her own. She also has been using my photos and i am looking at getting legal help in stopping her using our work. you have my email address so contact me for further information if needed.
Its only fair you know as your battle is exactly that! I suggest anyone else reading this report and block her http://twitter.com/#!/SophsKnox stop scum from doing this!
May 13, 2011 at 10:45 am
Patches
Anon, the picture from Oct 22/08 that Rae posted looks like a stock photo and she does say, “looks like this.” I took that to mean that, Rae had found a photo of the red drug and was showing us an example of it. I could be mistaken but that’s what I understood from seeing that photo …. that it is a ‘stock’ photo showing the type of red ‘stuff’ Rae was taking.
Patches