I know that you do not hurt anymore…
“Immunodeficiency (or immune deficiency) is a state in which the immune system‘s ability to fight infectious disease is compromised or entirely absent. Most cases of immunodeficiency are acquired (“secondary”) but some people are born with defects in the immune system, or primary immunodeficiency. Transplant patients take medications to suppress their immune system as an anti-rejection measure, as do some patients suffering from an over-active immune system. A person who has an immunodeficiency of any kind is said to be immunocompromised. An immunocompromised person may be particularly vulnerable to opportunistic infections, in addition to normal infections that could affect everyone.”
Allow me translate that into something a little more understandable for my situation. Leukemia means that my body does not have the full ability or capacity to fend off badness . My Mom is in the hospital with pneumonia. I am not allowed to visit. This sucks.
So everything is in a weird kind of stasis right now. Everything that I can know about this wonderful stuff has been identified and explained. I’ve got some idea as to what is coming my way in a few months and my relatively minor symptoms are being treated. But I’m still walking around with an incurable cancer in my body and I don’t feel *it*. Nervous and apprehensive? Sure. But that foreboding sense of doom isn’t here. Truthfully, I hope it doesn’t show up. The only real thing that I can wrap my head around is the hospital.
My Mom was hospitalized with pneumonia. The docs are running all kinds of test on her to figure out which type she has and it dawned on me that me being there might have not been a bright idea. Yep. Until they know for certain that my Mom’s bug is absolutely not contagious, I shouldn’t be in direct contact. Leukemia=compromised immune system and what is fairly easy for a normal person to fend off is not so much for me.
Yes, I know that I am in the calm that is the eye of the storm. I’m making the best of it.
To say that the past few weeks has been an emotional roller coaster would be an understatement of gigantic proportions. I go from feeling fine, to being gouged, to being diagnosed, to being staged, to being told that I need to start chemo. And all the while still feeling fine (or so I thought). I had been trying to at least mentally align with the fact that my body was going to be flooded with poison to do stuff that was going to make me “better”… even though I was feeling fine. As a pragmatist, I had to make sure that this was my only choice.
My wife and I have learned that it was far from my only choice. Yes, the chemo would have reset my body’s blood factory. But to summarize what I have learned from Dr. Keating: it would be like using a nuclear bomb when all you need is one well-placed sniper round. Chemo is the gold standard when all the indicators fit in the little treatment flow chart as mine did. Keating, though, is at MD Anderson, where flow charts aren’t used. MDA is at the very edge of what is happening right now in cancer research and treatment. While I have “staged” later than early onset, there is no hurry to start *any* treatment because my symptoms are not that advanced and there really is no benefit to starting early. And I have also learned that my very specific flavor of CLL is highly responsive to a targeted monoclonal antibody regimen that I will start in January. It’s not chemo. (Que the chair dancing music…)
As for those symptoms and feeling fine… turns out that I do have a few that I did not recognize. I’ve come to learn that getting horizontal and passing out in front of the TV at 8:30 is not just a sign of getting older. And I’ve learned that drenching night sweats are not the result of eating too much Thai food (although I’m sure that doesn’t help). Turns out that these are both symptoms of an overworked immune system. When the body works hard, fatigue and heat are the by-products. And being tired all the time is not “normal”. So I take an Aleve when I get the night sweats and doc has put me on Ritalin LA to combat fatigue.
All of you who know me and my already hyper approach to life can start giggling now. Yesterday was my first go with the pill. I’m pleased to report that I did not feel like taking a nap after a big lunch.
Some of you may have figured out that there is a lot of stuff that gets done to you when you get a suspicion or diagnosis of cancer. The definitive test for determining if you have CLL is a bone marrow biopsy/aspiration. You are given a milligram of Atavan via IV (not nearly enough, IMO), your ass is loaded up with Lidocaine (think tooth extraction numb) and then a well-intentioned specialist attacks your hip bone with a medieval torture instrument. Yes, there is a stinging from the Lidocaine injections. Yes, you feel pressure as the sadist twists the Jamshidi needle (I think of it more as an Arctic deep core sampler…) into your friggin’ hip bone. But what nobody tells you about is the crunching sound that needle makes as it breaks through the hip bone to pick up bone shards and then slurp out marrow. And when that Lidocaine wears off you are damn sore. For a long time. For next time:
Earlier this week I spent a day at Houston’s MD Anderson Hospital, the #1 ranked cancer facility on the planet. I was getting a complete evaluation from Dr. Michael Keating and his team for a second opinion on my treatment plan. My oncologist/hematologist had recommended a chemotherapy regimen termed FCR, which is a combination of 2 chemo agents and a monoclonal antibody. It has shown excellent results in helping folks with the type of leukemia that I have. But it is still chemo and I wanted to be sure.
Dr. Keating is acknowledged as pretty much the top guy in CLL. Many of his research findings, such as the FCR regiment implementation, are the basics of modern CLL treatment. The long and short of it is that Dr. Keating thinks there is absolutely no hurry to start chemo for me. He’s doing even more specific testing of my blood to confirm that the type of leukemia that I have will benefit from very specific types of immunotherapy and targeted monoclonal antibodies. And he thinks that the answer is very likely yes. FCR would work, but it’s like using a nuclear bomb when all you need is one good sniper… So why put the patient through needless discomfort?
And then his comment of “besides, I’ll have this cured in 3-5 years!” was delivered in all seriousness. The field of cancer research and treatment moves so fast that I now know that relying on just one opinion is not for me. So I still have cancer, but the specter of chemo has been removed for a bit.
Tomorrow I have another date with Ms. Barium. I get to have another diagnostic imaging soiree’ know as a PET-CT scan. Hopefully, I’ve got enough going on to keep my mind off the fact that I will be friggin’ hungry. The scan is at 1:30pm. No food or drink for 8 hours before. I have an 8:00am appointment with a doctor, a 10:30 with my physical therapist and then the barium chug-fest. I guess the positive side of this is that as long as they are doing the diagnostics, I’m not starting the chemo…
Posts have been few lately. Sorry about that. I’ve spent the last year getting healthier than I have pretty much ever been. Got a new pain management doc who did wonders with my neck and neuropathy. Went from about 20 pills a day to 2. All along, though, my blood work was a little wonky. My GP tests me regularly because I take Lipitor for cholesterol issues. Well, after a year of abnormal test results and no sign of infection… I got sent to the hematologist. 8 days ago I received my diagnosis of chronic lymphocytic leukemia. It cannot be cured. But with treatment, it looks like I can live a very full life and “likely die of something else”. So rather than be depressed over the fact that I have CANCER, I’m actually glad that my docs caught it. If this goes untreated, there would have been a lot of really important stuff that I would have missed.
Right now I am in the process of being “staged” which involves a variety of tests, some tedious, some disgusting (banana flavor does NOT make barium better), some that just seem to take forever… When that is over, my hematologists/oncologists and my specialist from MD Anderson will get their heads together and figure out what kind of lovely chemotherapy I get to have. I’ll keep you posted.
The name of this blog is “Non Sequitur”, which roughly translates from the Latin as “it does not follow”. I thought it was appropriate because my stream of consciousness thought process is usually a bit disjointed. Turns out that Leukemia is the same way. I feel fine. I actually feel much better than I have in quite some time. I don’t feel sick in any way. It does not follow that this has happened.
Feynman had it right in a brief lecture given in 1964. Not flowery or complex, just right.