Well I started chemotherapy, on June 14. It's been pure hell. I was dizzy (so much so that I couldn't open my eyes and barely could get from the couch to the bathroom) for 4 days straight, went to the MSKCC urgent care (nightmare) got pumped full of fluid and sent home. I've been slightly dizzy since then as well, it hasn't gone away totally yet. I had something like restless leg syndrome, but covering my whole body for 3 days. My vision went wonky for a few days, including aura like with a migraine, even if I had no migraine to go with it. I've had migraines. The anti-nausea meds caused headaches that debilitated me. Lots and lots of heart palpitations. The neulasta shot (given to amp up white blood cell count) made my bones hurt so bad it honestly rivaled kidney stone pain (and I've had 1.6cm stones, I'm not joking), and sent weird throbbing palpitation-like pains throughout my abdomen, up my back and down my legs.
Oh, and did I mention my entire mouth has been covered in sores to the point I no longer have taste buds, nor can I eat almost anything at all since like day 2? Yup. The numbing mouthwash I was prescribed also makes me gag and almost puke because of the undertaste.
This is all aside from the normal chemo stuff like exhaustion (my arms and legs occasionally feel like they weigh 400lbs each) and nausea. Oh, and I'm finally going bald.
And it's all prophylactic. I don't have to do it. So. I might stop. Because it's killing me. It's so much worse than anyone ever thought it would be. My doctors are shocked by how bad it is, but not that sympathetic. They're also impossible to get a hold of. I call first thing in the morning and they call back after hours or the next day. And god forbid I miss the call, then it's another day of waiting. No matter how serious the issue is. I am not a patient, I'm a product. The rest of the hospital/cancer center has been amazing, but this one? SUCKS. I call and ask to speak to the Dr specifically and I get a medical assistant calling me back 7 hours later? Not ok.
So that's where I'm at now. Waiting for Monday to come so the Dr might actually call me back from my request on Wednesday, to talk about quitting. Because I hate this, and I feel it's doing far more bad than good. Considering my Sarcoma Dr assumes I'm disease free already.
Friday, June 28, 2013
Thursday, March 14, 2013
I blame cancer.
Well, It's been well over a year since my last post! Let me explain my absence...
In December of 2011 I was diagnosed with synovial sarcoma, a soft-tissue sarcoma (aka cancer) in my left foot (where the arch meets the heel, underneath). It had been there, misdiagnosed as a lipoma, somewhere between 15 and 20 years. During 2011 it started to grow rapidly and became more painful than anything I had experienced (well, possibly rivaling kidney stones anyway). I was getting maybe an hour or two of sleep at night, max. And that's even on prescribed pain killers!
I had the mass removed in December (before they found out it was cancerous and which friends affectionately named Frank). Then went to many doctor appointments after that to determine a plan of action on removing more tissue and reconstruction of my foot afterward. February 14, 2012 I went in for the first, and worst, surgeries. They removed almost all of my heel and a good portion of the arch as well. Then took skin and fat from my thigh (the scar runs almost from my hip to my knee on my left leg) to reconstruct the foot. I spent the next two months sitting with my foot elevated (Letting it drop or dangle could have sent too much blood flowing which could have blown through the stitches on the tiny vessels and veins and such that my plastic surgeon micro-sutured.) then a month more of letting it dangle for 10 minutes at a time. Then another month of letting it dangle but not being able to put pressure on it. Then a few weeks of tip-toeing. Then being able to walk after that, but it was so sore I could only go short bursts before having to rest it. It wasn't till the end of the year before I could actually walk like a normal human being again (remember when it started, I was a pre-teen and since then had NEVER walked on that heel - I had to relearn how to walk completely!).
During the past year I gained about 25-30 pounds, just sitting non-stop, not moving, not being able to even take a walk. I'm desperately waiting for spring to come so I can start working on losing this absurd amount of weight I've gained (yes, absurd for me - This is the heaviest I have ever been, even after both of my kids I weighed less!). I am so uncomfortable in my clothes (though the husboy will be sad - Bye bye 32F boobs! haha), I can't wait to get back down to a size 5 in jeans. CANNOT WAIT. I have so many more clothing options at that point! And I will be going shopping again. To celebrate, of course.
That's about all I can do right now, I've got a Finley needing attention suddenly. ;)
In December of 2011 I was diagnosed with synovial sarcoma, a soft-tissue sarcoma (aka cancer) in my left foot (where the arch meets the heel, underneath). It had been there, misdiagnosed as a lipoma, somewhere between 15 and 20 years. During 2011 it started to grow rapidly and became more painful than anything I had experienced (well, possibly rivaling kidney stones anyway). I was getting maybe an hour or two of sleep at night, max. And that's even on prescribed pain killers!
I had the mass removed in December (before they found out it was cancerous and which friends affectionately named Frank). Then went to many doctor appointments after that to determine a plan of action on removing more tissue and reconstruction of my foot afterward. February 14, 2012 I went in for the first, and worst, surgeries. They removed almost all of my heel and a good portion of the arch as well. Then took skin and fat from my thigh (the scar runs almost from my hip to my knee on my left leg) to reconstruct the foot. I spent the next two months sitting with my foot elevated (Letting it drop or dangle could have sent too much blood flowing which could have blown through the stitches on the tiny vessels and veins and such that my plastic surgeon micro-sutured.) then a month more of letting it dangle for 10 minutes at a time. Then another month of letting it dangle but not being able to put pressure on it. Then a few weeks of tip-toeing. Then being able to walk after that, but it was so sore I could only go short bursts before having to rest it. It wasn't till the end of the year before I could actually walk like a normal human being again (remember when it started, I was a pre-teen and since then had NEVER walked on that heel - I had to relearn how to walk completely!).
During the past year I gained about 25-30 pounds, just sitting non-stop, not moving, not being able to even take a walk. I'm desperately waiting for spring to come so I can start working on losing this absurd amount of weight I've gained (yes, absurd for me - This is the heaviest I have ever been, even after both of my kids I weighed less!). I am so uncomfortable in my clothes (though the husboy will be sad - Bye bye 32F boobs! haha), I can't wait to get back down to a size 5 in jeans. CANNOT WAIT. I have so many more clothing options at that point! And I will be going shopping again. To celebrate, of course.
That's about all I can do right now, I've got a Finley needing attention suddenly. ;)
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