Hello everyone. I'm so sorry for the lapse in my blog. I've been writing like crazy (more on that later), but do have an update on the medical front. It's ironic, but as the time passes post-transplant, two things seem to happen simultaneously (at least for me); the patient may have reduced medical intervention needs, but anxiety can increase for every little ache and pain. In an earlier post I wrote about the potential for a cure with a stem-cell transplant. The docs say they start to whisper of a cure at the 2-year milestone, and become cautiously optimistic at the 5-year milestone. The extreme caution is for two reasons; cancers of the immune system are good at hiding out and reappearing, and even if they don't, the treatment during the transplant (and before) is so hard on your system that other problems can occur.
I met a very early bone-marrow transplant patient (his procedure was over 20 years ago), and he was the only one of the five that were treated together to survive. His survival, however, was long-term, and things have improved dramatically since then. Medical researchers at MD Anderson, for example, are making huge strides in the treatment of cancers, and as I understand it are looking at the disease from an innoculation stand-point; innoculate the immune system so that it can't slip in under the radar. This is a huge shift in perspective. Rather than treating the disease with toxic chemicals and radiation, they're looking at prevention. And of the toxic treatments, they've been fine-tuned to an extent such that the bad-side effects are being reduced (although of course they're not eliminated all-together.
Back to the dichotomy of hope and anxiety. With each month, quarter and year that passes post-transplant, you hope you'll be one of the lucky ones who is experiencing a real, long-term cure. At the same time with each month, quarter and year that passes you can't help but wonder if you're about to hit the wall. That timeframe between the 2 and 5 year milestones seems to take forever, and having both those emotions at the same time is draining. Luckily for me I have the mental distraction of writing, but that doesn't eliminate those two conflicting emotions, just buffers them a bit. And that leads me to my update now.
For the last few months I experienced some symptoms that had me worried - leg pains, shortness of breath, and some heaviness in my neck. They were minor at first, and I ignored them. Then they got a bit worse. I was scheduled to go on vacation with friends, and it was during a foray through several airports that I had a respiratory problem. Whether it was real or anxiety-induced, I don't know, but it negatively affected me for the rest of the trip to the point where I immediately contacted my Oncologist (while I was still out of the country) and moved up my next PET scan. It was originally scheduled for late May, and was moved up to last week, just days after my return.
So, three symptoms: leg pains, shortness of breath, heaviness in throat. PET scan results - clear! (except for the hot spot on my left shin which they now consider an-ongoing issue that's just become part of my physiology- an area biopsied and tissue removed near the vascular system that is always going to be hot now, even though it tested negative for cancer). I had lab-work done right before it, and everything looked good, too, even my electrolytes. I was concerned that they were out of balance, and causing leg pains/cramps, but I'd started to eat a banana a day during the vacation, and they diminished almost entirely, and like I said, the labwork looked fine.
The heaviness in my throat still remained, being light to non-existent at the start of the day, and worse as it wore on. So yesterday they scheduled me for a CT scan to check for blood clots. If you read my entries from last fall, you know that twice they suspected PE (pulminary embolisms) but couldn't get confirmation because my veins wouldn't cooperate for a contrast dye injection. They ended up using a nuclear medicine test that just gives the probability of PE's instead. The first test was negative, but the second showed a slightly higher chance of a PE, so to play it safe they put me on blood thinners. I've been on them ever since (and probably will be forever - some just have a problem with the anti-coagulant factors and docs tend to keep them on the simple Cumaden protocol forever, and it looks like I'm one of them.). Anyway, it seemed weird that there would be a PE given the blood-thinner protocol, but they were running out of ideas. This time they were able to do the contrast dye injection and get the test. All clear, no PE's.
Huh. So so far, PET scan is clear (no hot spots indicating cancer), and the CT scan is clear (no blood clots). Seriously, this is all fantastic news at the 2.5 year post-transplant milestone. But it still leaves me with the question - why does my neck/throat hurt at the end of the day? So I thought about it. A lot. I'd had some trouble sleeping a couple of months ago (I think this was because I was in the midst of some heavy daily writing and my brain just wouldn't shut down at night), and the doc prescribed me a sleeping aid. I took a minimal dosage nightly, and my symptoms started showing up shortly after. So now I've begun to wonder if I have a drug allergy to this med. I stopped taking it last night, and I guess we'll see. I also have an appt. with an ENT (ear, nose, throat doc) on Friday to try and eliminate all other possibilities.
So all that activity and anxiety had a good output - an all clear on two major health topics. We still have to check down a few things, but I think this is all just going away little by little, which makes me wonder if anxiety played a role in it all, and if so how much? That's a hard thing to measure, but I do think it played a part. Well at least I don't have to wait till May for that PET scan now!
As for the writing, I've now finished two books of my 4-book series, and am finishing up the outline work for books 3 and 4. I'm about to start book 3 and am very excited about pulling all the threads together. I started this series after I was first diagnosed, and the first book was awful! Seriously, my writing style was so weak! Part of that was due to my illness and the subsequent treatment of chemo (mushy brain affects everything!). But after much work, and many (many!) rewrites, book 1 is completely different, much faster paced/more active, and far more interesting. Book 2 came along very quickly, because I'd discovered a great way to format the dramatic elements of my story at the beginning, and that kept me on track throughout the process. Between that and finding the right active voice, the stories are moving along quickly now.
Okay, folks, update complete on both heads! I hope you're all doing well out there!
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