I don’t mean to post something every day, but I just had my follow up appointment with the oncologist and thought it was time to update, especially since my last medical update was so gloomy. This might be very long, (you can cherry pick which topics interest you, if any) but then I won’t need to do an update for several weeks.
- ANEMIA: My most recent set back was a rapidly falling hemoglobin and hematocrit. I’ve been quite anemic since my diagnosis in Jan, however, this was suddenly getting severe. I did have two units of packed red blood cells last Tuesday night (Jan 20). Before the transfusion, I could barely walk from the house to the car without becoming very short of breath and a heart rate of about 160. This was quite discouraging (as you can tell from that posting). It took about 24 hours before the transfusion started to help. But then I did feel better, with an energy level of about 50% of normal rather than 10%. I worked in 13 miles of hiking and walking while I could over subsequent three days. Then I started to slip. My hemoglobin and hematocrit as well as the associated symptoms have since remained stable, where my energy level is about 30% of normal. We still don’t know the cause, but we are hoping it is an (I call it poison) antiviral drug (Valganciclovir HCL ) that I had to take to treat an CMV infection. It has a Blackbox warning of causing severe anemia and death, but if I didn’t take it, the mortality of the virus was quite high. I took my last dose on Sunday so now we will see if my bone marrow bounces back.
- NEUROLOGIC: I’ve mentioned before that my first symptoms of this mess were neurologic. In December, I started to have twitching throughout my body, muscles jerking, weakness in my left leg, difficult swallowing, and if I coughed or sneezed my entire abdomen would go into a painful spasm for about a minute. I was making a self-diagnosis assumption that I had something like ALS. Then the first lab, in Jan, showed that I was in renal failure (I didn’t see that coming). It took a week or so in the hospital to figure out that the renal failure was caused by cancer. We, my nephrologists and I, made the assumption then that the neurological problems were caused by living in renal failure for who knows how long. But still my symptoms were odd and sometimes I felt I was not being believed. Those symptoms, thank goodness, improved some during my stem cell transplant, and part of that improvement was getting off dialysis (which always made them worst). However, this past week, those symptoms (which had moved to the background) became bad again. But now, after some research, we think that these bizarre symptoms may be a rare, “Paraneoplastic-Isaac’s Syndrome.” While it does not give us any treatment, it explains my symptoms. I still pray in time these will resolve are they are quite troublesome.
- RENAL FUNCTION: While my kidneys are still shity, they are stable. I have no fluid problems, my electrolytes are normal, but my BUN is 58 and my Creatinine is 3.4. Words cannot express how grateful I still am to be off dialysis and have these tubes out of my chest. It is very hard having to go on dialysis, but on top of everything else, it pushed my quality of life to a be zero. I continue praying that they will improve and never worsen.
- CANCER STAGING: Most of us are familiar with the concept of “waiting for tests results.” The most common one, which comes to mind, is the woman who has a density on her mammogram and then needs a biopsy. During the time of waiting for the results of the biopsy, it can be nerve racking. I never knew, before now, how cancer patients must face the infamous “tests results” over and over and over, with a huge amount riding on the results. If the test comes back with one reading, it means that you will face severe torture and death in the near future. If the test comes back with another result, it could be that you live a long and healthy life.
On September 10, I start my cancer re-staging. This involves a blood test to look at my cancer cells (precisely Lambda Lite Chain Plasma Protein), a bone marrow biopsy (my 5th), a full body MRI to follow up on one boney lesion in my left scapula. We expect, after a stem cell transplant, that there will be no cancer or only a slight trace. That’s how well a stem cell transplant can work. Now, that is still not a cure because Multiple Myeloma usually comes back, in months or even decades.
However, sometimes, the stem cell transplant fails, and the cancer is as bad as ever or even worse. That would be devastating and put me in a real quandary. The only hope then would be starting all over with another stem cell transplant. That process was so brutal, I’m not sure I would do it. I say it was like going to summer camp at Auschwitz. Yet, those who had donor stem cells (and I used my own) have it even worse than I did.
- CONTROVERSIAL POSTINGS: I have had a blog for about 15 years. That is where I posted controversial topics, often related to the post-Christian world of Western civilization and the failure of Evangelicalism. I had a handful of regular followers who share much of my perspective. Then, after my cancer diagnoses, I used this same blog site for my medical updates. I’ve had over 160 new people sign up for those. I am deeply grateful for that support and so many people who care about me. However, through my “Ramblings” I continued to post some of the controversial topics, and to a different audience than I had before. I realized after my series on “Another Evangelical Bites the Dust” that maybe it was not a good idea to include my old type of postings with this new audience, as some have found some things, I’ve said offensive. The one thing that my cancer has done to me, is to make me not care about offending people, if I speak the truth. However, with that said, I will not post my last paper on this topic. If someone really wants to read it, they can contact me, and I may send them the link. I will still do “Ramblings” here about other things.
- FUTURE CAREER: The best way to state it, is my career as a headache specialist may or may not be over. I never wanted to see it end this way. Time will tell, but my limits on being exposed to infections, as well as my extreme fatigue, prevents me from returning to work right away. This may or may not be the death nail in my future return. Time will tell.
- WRITING: If I cannot return as a headache specialist, I am returning to writing. I have just finished editing my new novel, Christina Athena; The girl with the headaches. I will have it professionally proof-read, and then it will go to press. I am also wanting to get back working on an old novel, Rock Harbor. I also have one more nonfiction book in the back of my mind, which I want to write, and it is called, Meta Enigma; the Big Question that Shames all Answers. I have the opportunity to write part of a PA textbook, the part on headaches, but I haven’t decided if I want to commit to just an arduous task.
- VISITORS: I may have scared visitors away when I first came home. I was concerned about my endurance (I was sick a lot when I first got home) and being exposed to infections. So, since my return home over six weeks ago, I have had no visitors. Now, I am very grateful to Jerry, whom I walk with about 3-4 days a week. I also know that Curt and Don have offered to walk with me, but Jerry seems to beat them to the draw. Diane offered to come and visit, but I got too sick that day. But that has been the extent of my social contacts (except for Greta my Saint Bernard, but she doesn’t talk much). In my notebook about post-transplant recovery, social isolation is big concern. I can’t go out in groups, such as Church, concerts, lectures, meetings, or even street fairs, to avoid infections. But I am open for visitors. I still get tired after 30-45 minutes.