[Bob]

I'm a non-sequitor?? Oh, secretor

by Bob on Wed Apr 28, 2010 5:31 am

I kept straining my back. At least that's why I thought was the reason I kept having bouts of lumbar pain. Doctors agreed with me, saying it was strain. I began to wonder as it kept happening more and more, if maybe there was something else wrong. I went to the VA in Spokane and they did a number of tests including a Bone Marrow Biopsy and on February 8, 2008 they diagnosed me with Multiple Myeloma, likely the result of exposure to Agent Orange.

I'm a non-secretor and don't manifest the protein and blood issues associated with Myeloma. However, I suffer skeletal damage which has become severe. I do get anemic and my calcium levels go up and down in a stock market like rhythm. I also seem to catch every passing flu spore and cold bacterium. At times it makes me feel like a hypochondriac; I keep a couple week course of cipro in the 'fridge.

As my oncologist was explaining things to me after breaking the news, he said that a skeletal survey showed widespread areas of damage and told me that without treatment I might have six months or maybe a few more. I began treatment right away. I asked to be given Velcade after reading of its success on an online forum. He said sure, that was what he had in mind, but the wanted to try multiple protocols instead of just one. He set me up for cycles of Doxil and Velcade, supported by Dexamethasone. He gave me Dex first, a couple of days in advance of my first infusion. My reaction to the Dex was similar in nature to a methamphetamine overdose. I was hot, sweating, shaking and twitching, and I was suffering severe muscle cramping throughout my body. My pulse and blood pressure went high as well. I went to the VA's ER I was feeling so badly and they gave me a sedative that slowed my metabolism to the one-too-many-lattes level. It took almost a week before I could sleep without Ambien.

My first infusion came and my oncologist gave me Doxil. It took about an hour for the procedure and as far as I was concerned, it was a walk in the park. I read my trusty Kindle through it. I went home and all was well. A couple of good friends stopped by in the evening to see how things were going. A woman who I had been married to in the past is also my best female friend. With her came a guy I'd known for 25 years. Back in the old days we shared a house to save on rent. He got on so well with me and my kinds that we all call him Uncle. They happened to arrive at the same time quite coincidentally, coming to celebrate my first day of chemotherapy.

Normally I would have been thrilled to see my best friends, but I was on my hands and knees hallucination. I was draped over the toilet where I had been alternating between vomiting and having diarrhea for the past four hours. So It wasn't that I didn't like seeing them, I was oblivious to their presence. My ex wife took my pulse and told my friend that it was super weak and thready at about 40 beats per minute. They called 911.

The ambulance came to take me to the VA. The VA was too busy and had no available beds, so they sent me to Sacred Heart Hospital here in town on their dime. I was dehydrated, my skin was peeling from all over my body and I was covered with areas of rash. I was also having a histamine reaction which was making it difficult to breathe. I had an oxygen reading of 84, my pulse was 33 beats per, my blood pressure was 80/38. They took care of me very well, and were especially conscientious about making sure I was getting appropriate pain medication. One of the effects of the chemo was to inflame my gut, giving me unending reflux, nausea and cramps. They got that fixed up too. Five days later I was released. As they released me, they said had I gone more that 2 or 3 more hours without care I would have died.

At my next appointment my oncologist loaded up the familiar red bag of fluid (which I now called red death) in honor of my experience. Next I asked the doctor why he was giving me a second dose. He explained that it was not uncommon for people to experience distress on the first dose, but that it would be better now. Sadly, I believed him and my two friends had to take me to the hospital by evening. This time I spent 5 days at the Spokane VA Medical Center. When I next spoke to the doctor, he said he was still interested in trying to give me Doxil and I told him I would take it if he did too.

He switched me to Velcade. I was taking it alone since we discovered I was too sensitive to steroids to take Dex or Prednisone, and didn't want to take the Doxil again. I began a 28 day, three weeks on, one week off cycle of Velcade. And so it went. Velcade didn't make me nausea or mouth sores or anything else. I did irritate my stomach a little, but I think only because of the damage Doxil did to my gastrointestinal system. I'll be taking Omepersole for the rest of my life. After a few cycles, Peripheral Neuropathy appeared. It attacked my feet, then my lower legs, and finally, my hands. As time went on the PN became disabling. I could neither walk nor use my hands.

I was already taking morphine for the bone pain, and upping the dose had no effect at all on the neuropathy. My oncologist put me on break, suspending treatment for a few weeks. Over the course of a month, I got back the use of my hands and the neuropathy left my legs while staying in the feet. I returned to my oncologist with the expectation of resuming treatment, his prognosis whispering to me. I got through a cycle and was again disabled by neuropathy. It caused numbness in my hands, but it was tolerable. But my legs and feet were so painful that standing was impossible. The VA gave me a wheelchair and said they might order me a scooter if my condition persisted. My oncologist then called me for a consult and told me that the Velcade, which should have made some kind of difference by now had been 100% ineffective. However, he said, it appeared that it had accelerated the cancer and to measure it, ordered a skeletal survey again along with a full body MRI.

It had indeed progressed, Most of my spine, my clavicle/shoulders, ribs, pelvis and hips were "significantly involved." That explained the heightening of my usual pain levels and increasing my dosing with morphine to use it around the clock. They started me on Morhine SA Contin, which is a slow release vehicle that lasts about 12 hours. I was taking 30mg twice a day. The doc said he wanted to wait for my neuropathy to diminish and switch me to Revlimid. In the interim, he sent me to the Seattle VA Radiation Oncology center to irradiate a number of spinal tumors in an effort to reduce the pain they caused.

Radiation was no big deal. It was like an xray; I lay on a table while a behemoth machine would gimbal around me, making humming noises for a couple of minutes. I did that every week day for two weeks. I came home believing that I dogged the side effect bullet, I didn't get much nausea except at first, and it may have been a sandwich I ate and not the radiation making me uncomfortable. However, between the chemo effects of Velcade still prominent in my but fading and the radiation, after two weeks I got sleepy. I would sleep 18 to 20 hours a day all around the clock. I was absolutely exhausted, but after a bit over a month, I found myself back to a fairly normal schedule of sleeping and wakefulness.

I was sent back to Seattle to be evaluated for a stem cell transplant, and the chief oncologist himself took my case. That was the good news; the bad was that I was not a candidate for transplant. Being unable to tolerate steroids was the primary disqualifying issue. So it was back to Spokane to see how I would fare with Revlimid. My chief oncologist told me he wished me the best because in his estimation, I would perish in six months if treatment wasn't successful. After taking Revlimid for two cycles, my neuropathy was back and in full bloom. And so again my treatment was suspended. A sat for the next few months, thinking about what my doctor had said, and expected to find myself weakening rapidly.

But I didn't. This caused a whole new set of tests; another skeletal survey, CAT scans this time, radioactive stain tracing to monitor my blood circulation, cardiac stress testing and 24 hour collection urine studies. The doctor said that my Multiple Myeloma had devastated areas of my skeleton, mostly in the skull, clavicle, and spine. My back had begun to make snaps, cracks, and popping noises (followed by high breakthrough pain) and he told me he'd only seen bone damage as bad as mine post-mortem.

They called the full team together, both Spokane and Seattle, plus people from Fred Hutchinson/U of W medical center. They discussed me in round table forum and unanimously concluded that it would be pointless and perhaps harmful to continue any treatments. They felt the best approach was to give me Zometa to help against bone deterioration and medications to control pain as much as possible. At that time, they said that "seriously," I needed to get my affairs in order. Once again I got a six month prognosis.

That was almost a year ago, and I have just come back from Seattle where I underwent more radiation to kill the new tumors that sprouted on my crumbling bones. My body is literally absorbing the bone, eating it away. Between the neuropathy that still plagues my feet and the delicate nature of my skeleton, I became permanently disabled; confined to an articulating bed and a wheelchair. I am warned not to lift anything greater than 5 lbs, greater weight is likely to cause more bones to break. I'd already suffered a broken rib by rolling over a clump of bed clothes while laying down. It put enough concentrated pressure that my own weight of 130 lbs snapped it off like a twig. Man, that hurt.

My medical involvements only include biannual checkups, the refilling of the prescriptions for pain and to mitigate damage to me done by chemo, and to give me Zometa. It's like I medically retired from work when I began chemotherapy, and now I was retired from chemotherapy and unable to work.

I spend my days reading books, mostly mysteries from like likes of Johnathan Kellerman, John Connolly, Mike Connelly, John Griffen, Robert B Parker, Philip Margolin, Janet Evanovich, JA Jance and many many more. I read voraciously through my Kindle, which has become a third arm to me. I watch television, although more and more it is getting difficult to relate to many of the programs and intolerable to watch infomercials. And I build robots that move autonomously (on their own). With different sensors and stylized programming, I have about 40 of them; some built by me, and some by manufacturers like WowWee and Tomy. I keep a ready supply of electronic components so I can build pretty much any reasonable idea.

It is more difficult for me these days than back in the ebb and flow of medical appointments; I'm more isolated without the day trips, and the hope inherent to taking chemo had evaporated with the announcement of no more chemo. Plus, the pain keeps increasing and and insomnia has become a constant companion when most people have sugar plums dancing in their heads. But I don't think it's terrible to be me, I'm frustrated with the cancer that prevents me from being me --skydiving, hiking, and motorcycle, sports car, and airplane racing.

That's my story and I'm sticking to it. Darn it.

[Boris Simkovich]

Re: I'm a non-sequitor?? Oh, secretor

by Boris Simkovich on Wed Apr 28, 2010 8:56 pm

Thank you very much for introducing yourself, Bob. And thank you, as well, for the contributions you've made at the forum so far. I know from your [url=http://www.[website].com]blog[/url] that you have a lot of valuable insights to share with fellow multiple myeloma patients. I am sorry that many of those insights are a result of the very rough road you've traveled when it comes to multiple myeloma. But knowing how rough that road has been makes me appreciate all the more what you have to say and your willingness to share your learnings with others.

I wish the road ahead for you looked brighter and more hopeful than it currently does, Bob. I hope, though, that the challenge you are facing does not keep others from welcoming you to these forums.

My mother once told me that the strangest thing she experienced when she was diagnosed with breast cancer was how people who she knew very, very well started avoiding her and acting like she didn't exist anymore. We're not talking about people failing to respond to requests for help or not replying to phone messages. We're talking about people going out of their way not to say hello to her on the street, or keeping their distance from her at social functions. People she had considered very close friends.

She said that, from that experience, she learned that many people just cannot deal with cancer -- particularly serious cases of cancer. Something about the disease is just too much for many human beings to handle psychologically.

Her story made me resolve to make sure I don't do what people did to my mother. So welcome, Bob, and thank you. And know that all of us here hope that, despite the odds that you are facing, things will work out differently -- and much better -- than expected.