So, Ive had a lot of new friends and followers on facebook over the past few months, and it occurs to me many of them dont know about my cancer, or why Im going through the medical issues Im going through now. This is a long one... Some time in 2004, I started showing symptoms of chronic illness. By late 2005, these symptoms were frank, undeniable, and progressive; and they were not responding to changes in lifestyle made to improve them, or medications used to treat them. I eventually gained over 200lbs, lost a huge amount of muscle, and had significant joint and nerve damage. I also had significant mental, and emotional impacts; memory, alertness, and focus problems, extreme fatigue etc... It took six years of these symptoms progressively worsening, with me getting sicker and sicker; being treated for diseases I didnt have, going to doctor after doctor, test after test; to finally get an initial cancer diagnosis. It turned out to be an atypical presentation of multi-endocrine neoplasia (an extremely rare form of cancer in multiple parts of the endocrine system), with associated paraneoplastic syndrome. Basically my cancer expressed as a primary thyroid cancer, plus little speckles of cancer (called microlesions) throughout my entire endocrine system, but particularly in my pituitary gland, and adrenal glands. This made my body go haywire, and present with symptoms of diseases I didnt have, while masking the cancer I did have. This is very difficult to diagnose properly (rare cancer, inconclusive tests, atypical presentation, paraneoplastic syndrome, and endocrine problems mask themselves as other problems anyway), and most of the time doctors rule out very rare and unusual problems... and rightly so. Theyre taught that when you hear hoofbeats, think horses not zebras. Except sometimes its zebras. It was another 15 months from the initial detection of the cancer, before we isolated it, and were able to proceed to final treatment. Initially the cancer appeared to be slow growing, stage two, encapsulated, and not in danger of metastasizing. Being under 45, and having my system so damaged by the previous few years, my care team elected not to pursue aggressive treatment. The thought was, surgery and radiation in the condition I was in in 2011, was actually riskier than leaving the cancer in; and if I lost a lot of weight, and got the other symptoms (inflammation, edema, metabolic problems) under control, Id likely have a better outcome. I was able to do that. Prior to frank symptoms, in late 2003, I was at 295lbs, and mostly fit (ex football player and powerlifter). Before we discovered the cancer, I peaked at 497lbs. Once I was medication to control my inflammation, edema, and metabolism; I was able to lose over 150lbs in less than a year, even briefly dipping back down to as low as 337lbs. Unfortunately, I couldnt stabilize the weight, fluctuating wildly between 340 and 390lbs, and they wanted me to be stable under 365 before surgery. However, some time during that 15 months, the cancer switched from slow growing to aggressively malignant. When my periodic ultrasound showed a major increase in size from the previous test, we scheduled non-emergency surgery for six weeks later, still not realizing quite how bad it had become. By the time we got the primary tumor out, it was 10.2cm (a bit more than 4, about the size and shape of a large apple), and was deviating my airway by almost 2. In just the few weeks between my pre-surgery consult, and my actual surgery, it had grown by two centimeters or more in each direction. The cancer had progressed to stage 4, with extensive vascular infiltration and high concentrations of lesions in my adrenals and pituitary. Thank god the primary mass was encapsulated, so it didnt go lymphocytic, and it didnt spread into my other organ systems, just my endocrine system. At my post surgical followup, the doctors said that based on the pathology and demonstrated growth in the previous few weeks, I would have had at most a few months left to live (they called it one of the most aggressive malignancies of this type they had ever even heard of). After surgery, I went through the maximum non-emergency course of radioisotope therapy (the most theyll give you unless theyre sure youll die if you dont get more, because the next higher dose may kill you before the cancer does), to kill the metastasis. After three months, I had a full body radioisotope scan, and they found no distant masses or concentrations, just little speckles that were dying out on their own as the radiation worked. Ive been cancer free since Christmas 2012. Unfortunately, between the cancer, the long term damage, the radiation, and all their side effects; my immune system is compromised, and my endocrine system functions very poorly (absent or insufficient hormone production and inadequate bioregulation). Over the next 3-5 years both should improve, but neither will ever be close to right... just better than they are now. So, I have to try compensate for the lack of my bodies natural regulating functions, with a balance of supplementary and replacement hormones, steroids, stimulants, anti-inflammatories, and supplemental vitamins and minerals. These can be difficult medications to balance, requiring a lot of time consuming and expensive testing and experimentation. They also change over time, so I have to periodically adjust them, and every major adjustment has to be given 6-12 weeks to stabilize and retest. Good days and bad days... Still, Im alive, and Im cancer free. One major problem though, is if I get a major systemic infection, like pneumonia (which I did about a month ago) it can throw everything out of whack. Either the meds stop working, they work oddly (too little or too much effect for a given dosage, or atypical effects), or they start adversely interacting. If that major infection lasts for more than about two weeks (which it did this time), it can trigger major endocrine problems, which I then have to try to compensate for with other medication... or just discontinue most of my medications and ride it out (often the better choice... or the only one because the meds just dont work). Even after I recover from the infection, It can take a few days, or even a few weeks, to recover from the endocrine issues. Earlier this year, I had a very severe case of pneumonia lasting six weeks. Because the pneumonia was masking the symptoms, we didnt realize how badly my medications were working. We also didnt know that I had been having a long term and worsening adverse reaction to my primary thyroid medication (the symptoms can be subtle for months, until they suddenly become serious). I finally recovered from the infection itself, but the pneumonia had dramatically accelerated and worsened my adverse medication reaction, provoking a crisis. For about 10 days, I was going into and out of a shallow coma. After the coma hit, the adverse medication reaction became obvious. We got me off the bad medication quickly, and I started recovering. We switched me to another medication which was better, but after a couple months, I started getting worse again. The same adverse reaction was still occurring on the second medication, just not as much. Finally, a few months ago we switched to the primary thyroid medication that Im on right now (pure synthetic t3, called cytomel, or generically Liothyronine) which were now sure is correct for me (no more adverse reaction at all). But then I had to go through 12 weeks of clearing out the effects of the previous medication, and adjusting to the new medication, to get a baseline to work from. That 12 weeks was up three weeks ago. Now that we have a clear baseline, we need to adjust all my other medications, so the right thyroid medication will work properly. Its working now, but not as well as it should be, so we need balance and adjust the supporting medications and dosages (adrenal support in particular). The new medication is much more sensitive to the supporting medications being balanced. We were planning on doing that about three weeks ago, but the second bout of pneumonia hit, so we had to wait. That pneumonia caused other complications as I said above. The only solution was to get off most of my medications and ride it out, then to get the tests done for the new secondary medications and dosage adjustments. That was what we finished today. Of course, meanwhile, even after the pneumonia clears up, Ive been semi-comatose and in a lot of pain for the last few weeks. Between the pneumonia, and the endocrine crap, Ive basically been in bed sick, for four weeks. Now Im back on all my normal medications, and will be back to baseline in a couple days. My test results will be in then, and I can finally get the right supporting medications in place, and then adjust dosages. Once we get the supporting medications right, even if I get pneumonia again, Im much less likely to have a major problem, because Ill be starting from a much better state, and the supporting medications will properly compensate even with the effects of the illness. ... So basically, the second bout of pneumonia hit at the worst possible time. If it had just been a week or two later, with the right medications in place, it might not even have progressed to pneumonia at all, just staying a minor respiratory infection.
Posted on: Tue, 23 Sep 2014 21:24:53 +0000
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