I’ve started working out in the gym in an attempt to bulk up my skinny body without getting back the fat I lost during this process (My cruising weight prior to all of this was around 175, it’s now 160..which is much healthier.) I started out with very very light weights. However, I’ve had to suspend my workouts since I’ve developed some shoulder stiffness. My oncologist assures me it’s not due to any treatment, so I’m going to see an orthopedist and I’ve been getting some acupuncture.
Got my first post chemo haircut yesterday! That’s pretty significant. It’s super wavy right now. Pre-chemo, I had some flecks of grey. Interestingly, there is no grey in the new crop of hair. I suspect that will change.
Received a significant update on my biopsy yesterday. As I mentioned last time, my doctor sent my results to ClonoSeq, a new analytical tool that can determine whether or not my two cancers came from the same stem. And it also is much more sensitive than standard tests to determine if I have any active cells. The results are:
1) the multiple myeloma and leukemia are not from the same stem. One did not cause the other. It is mostly just bad luck that I contracted a second cancer, although it is still possible that the myeloma treatment created an environment conducive to the growth of the leukemia. But from an ongoing treatment standpoint, each needs to be addressed separately.
2) to a measure of 1 in 1,000,000 cells, no active cancer cells were detected. Specifically, the report says: “Test findings are consistent with a lack of detection of either original clonal population.” Initially, that caused my doctor to suggest I was cured. But when I asked him if I could say that here in my blog, he suggested: ”You can say – I am in the most stringent CR (complete remission) possible, no disease is detectable by the most sensitive tests (MRD-flow and NGS for V(D)J) are both negative). Cure = 10 years disease-free! Having said that, depth of remission is related to duration of remission. If you have negative ClonoSeq at one and 2 years you are probably going to stay in remission a long time or forever.” I’m suspecting that his not using the adjective “cured” maybe following the Jewish custom of not giving a “kinehora” (tempting fate). But all in all, this is fantastic news.
The ongoing plan for now is to have biopsies every 6 months. Blood tests and doctor visits monthly for the next six months. I’m not on any chemotherapy or steroids. Just some anti-viral and anti-fungal meds and some mineral supplements (magnesium and potassium). I’m also on meds to treat the steroidal diabetes that was caused taking steroids for several years. And that is working quite well. My glucose is normal.
In unrelated news, we’ve been enjoying spending time with our 2-year old granddaughter Madison. We have a weekly pajama party with her on Tuesday nights. Lately, she’s been having trouble settling down to sleep. So, I’ve gotten into letting her fall asleep in our family room while we watch Rachel Maddow. That usually puts her out in about 20 minutes. Plus, she now knows what “quid pro quo” means!
Rasta “Papa” with Mad Scientist Madison on Halloween
Results from latest bone marrow biopsy show no detectable cancers. So, I’m Minimum Residual Disease Negative (MRD-). This means that not one in 10,000 cells shows any sign of disease. An excellent outcome. Furthermore, as I mentioned earlier, the cells were sent for a deeper analysis to another lab that reports < 1 out of 1,000,000 cells are cancerous. These results were shared with me during my regular visit with my nurse practitioner who is unable to interpret them…specifically if <1 is equivalent to 0. My doctor is on vacation, so we’ll have to wait till he gets back for the definitive word. But it is certainly very encouraging. I’m guessing that it will be measured again in a few months and if it gets to 2 or more, that would require some sort of intervention. But that is just me guessing. I’ll see what the doc says when he gets back. Perhaps it is reflective that I’m on the road to cure. Fingers crossed.
I’m feeling quite good these days and getting back to my old self. I’ve been going to the gym regularly and lifting light weights. Riding a bike on flat ground. Hitting tennis balls with an instructor, although I don’t quite have the stamina yet to play a match. I’ve resumed my role with UCLA on an institutional review board, where I sit on a committee to review the ethical and safety aspects of clinical trials in oncology. I’m not experiencing any major symptoms or side effects. I’ve finally resolved a stubborn cold I caught several months ago. I do need to be extra careful in public gatherings as I’m rather susceptible to catching a cold or the flu when flu season gets into full swing. Getting on an airplane is still not a good idea, so we are limiting ourselves to local trips for the time being. For example, Susan and I drove up to Mammoth (about 5 hours by car) to see some fall leaves last month. For the most part, my days are filled up with daily exercise, reading clinical trials, watching impeachment hearings, and of course, watching Wisconsin football and basketball. I also spend time with my granddaughter, Madison. Hillary has a late class on Tuesday nights, so we have a weekly pajama party with her. She is equal parts fun and exhausting, but we love every second of having her around.
My hair is growing back (don’t take the above photo as an indication!). It’s wavier than my before but the color is about the same. Actually, fewer flecks of gray than before. I’m still pretty scrawny, about 25 pounds lighter than before this all started. I’m wearing 31-inch waist jeans. But I find it to be a comfortable weight and hope to stay right around here. People I run into, like the checker at the grocery store and friends from the gym, all say I look a lot healthier. Man, I must have looked pretty awful before!
People often ask me how I managed to get through all this. The only wisdom that comes to mind is to never assume the worst possible outcome. I’m not saying to ignore it. But just don’t assume it. Like when you hear all the possible side effects of a medication advertised on TV, don’t assume that you’ll get them. Gad…they sound like a Stephen King novel! You COULD get them, but don’t assume it. I was told a whole lot of scary things could happen to me. And I was even given odds that such as 1 in 3 people have such negative results. I just couldn’t bring myself to assume that I would. It’s like living in California. You can’t be blind to the risk of an earthquake. You should definitely prepare for it. But I refuse to assume the worst possible outcome. I don’t expect we will fall into the Pacific Ocean if it happens or my house will fall on top of my head. It will probably suck for a while, but we’ll be OK. That’s how my cancer fight has been so far. And if the worst possible outcome SHOULD happen, at least I won’t have wasted time worrying about it.
Hermosa Beach – July 2019
I made it to Day 100 post transplant. That represents the end of the most dangerous period where I would be most likely to experience rejection of the transplanted cells. Happy to report that there is no clear rejection. I am experiencing some troublesome diarrhea, but my medical team thinks its from my medication and not a sign of rejection. I’m riding up to 14 miles/day on a bicycle. And I’ve been hitting tennis balls with a club pro…although I get gassed pretty quickly doing that. It will take awhile before I’m ready to play competitively. My hair is growing back. The hair on my head is growing slowly. It’s about crewcut length. Susan says it looks less like I’m a cancer patient and more like I want it to look that way. My beard is growing a little faster and I need to shave about every other day. The hair in my ears is growing super fast. Go figure!
My latest bone marrow biopsy was done last week…right on day 100. Results came in last night. I’m MRD-. No cancer detected with very sensitive instrumentation. The best possible result. Could signal that I’m cured…although things need to stay this way for awhile before we can make that claim. Nevertheless, it’s great news.
Next step….my lab sample will be sent for evaluation by an even more sensitive test. This test…called clonoSEQ will do 2 things: 1) it will solve the question of whether my Myeloma and Leukemia are related to each other or completely separate. This will be helpful information should any additional treatment be required. 2) it will detect whether there are as few as 1 in a 1,000,000 cancer cells active. The current results can ID 1 in 10,000. Why do this? Cancer grows fast and a small problem can be a big problem pretty quickly. So, if any evidence of cancer is identified, it will be treated right away and I’m told it is easier to knock it out when the numbers are that small. Not sure how long it will take before the results of this test are available. It’s pretty high tech stuff. FDA approved, although there is a question of whether Medicare will pay for it. Either way, I’m signed up.
Currently suffering from a cold…which can be problematic since my immune system is still very immature. But so far, it’s behaving like just about any other cold I’ve ever had. I’ve been warned that it may take longer to shake it than previous viruses. C’est la Vie. In light of all the positives, it would be churlish to get too upset about having the sniffles.
Day 70. Life is slowly returning to a semblance of normal. I’m driving, shopping, cooking, going to movies. Going to a debate watching party tonite. I’ve been meditating almost daily and going on two mile walks most days – which I consider step 1 of my ultimate rehab. But yesterday, I decided to try getting on a bike as step 2. I was a bit skittish about jumping on my regular road bike. Didn’t think clipping in was a good idea. I was also cautioned that the skinny tires would be particularly slippery with so much sand on the bike path. So, I went to the local bike store and rented an upright beach cruiser. It was a real clunker. Had 3 gears and weighed about a ton. But it was a comfy ride and I was able to pedal from downtown Hermosa Beach to the North end of El Segundo – about 8 miles round trip. It took a bit more effort than I expected, but I was comfortable and quite happy to be riding again. Especially on an almost perfect summer day along the beach. It was very liberating. Plan to go again tomorrow. Next step will be to try to hit some tennis balls.
Numbers remain solid. All systems go.
Madison and “Papa” – May 2019
I’ve reached day 50 of the 100 day post transplant mark. I’m told that the I should start feeling closer to my old self after day 100. There is also less likelihood of complication after day 100. So I’m ½ way there.
I had a very encouraging doctor’s appointment yesterday. First of all, all of my immune system numbers are in the normal range. That’s extremely encouraging. It means that the donated immune system is growing in my body nicely. It doesn’t mean I’m as bullet proof as you are. I still have a baby immune system. But I don’t need to be as concerned about bacterial infections as I was up to now. I still need to be very concerned about contracting something viral….a cold, the flu, measles (yikes) etc. So I still can’t go to crowded venues that I typically do in the summer. Dodger Stadium is off limits. Same with Hollywood Bowl. Pageant of the Masters. Or a Jeffrey Epstein accuser reunion. But I can go out to dinner or to a movie theater…but use caution. If someone is coughing or sneezing, I need to relocate. I was also greenlighted to visit with my granddaughter so long as she doesn’t have a cold. And…of course… she just came down with a cold, so I’ll have to wait a bit for that one.
I was also given the green light to suspend having 24/7 babysitting. I’m able to drive. Hospital visits are now 1 day/week instead of 2. All things I’ve been looking forward to. My doctor told me I should not be doing much in the way of household chores, like washing dishes or taking out the garbage (not really, but don’t tell Susan!)
I’m definitely starting to feel stronger. I walked 1.5 miles yesterday without stopping to rest.
It very much feels like I’m getting a jail release. It’s been hard to be so limited. And it was kind of weird to always have someone around. I enjoyed having friends around, but it was very uncomfortable on the days when I had a home health aide on duty whose primary job was to watch me while I was watching TV. Poor thing must have been bored out of her mind.
Pleased to share this good report. I expect I’ll get progressively stronger as the next few weeks unfold. Still no way to know if we’ve successfully chased the cancer away…. although current indications are positive. Next step on that will be a bone marrow biopsy around Day 100.
I’m at day 42 post-transplant. I’m making very good progress. Results wise – the numbers are very very encouraging. The donor cells are engrafting and I’m growing back an immune system. I’m no longer neutropenic (which is when my immune system is so compromised that I have almost no defense against infection). I’m not experiencing any signs of rejection of the donor cells. In other words, it looks like we may have succeeded in overcoming the cancer…although it is too early to declare victory. The first 100 days are the critical period, but here at day 42, things are very much on track and days when things are most likely to go wrong are behind me.
I was hospitalized for almost exactly a month. It was quite an ordeal. During the time, I received a lot of chemo. I received a full body dose of radiation. I got the donor cells. I had daily infusions of anti-rejection meds, antibiotics, electrolytes, and other things. I didn’t have much of an appetite, but I managed to choke down enough nutrition to keep myself healthy. There were a few days when I didn’t leave my bed…but mostly I was able to walk the floor I was on. I wasn’t permitted to go any further since my immunity levels were so low. I’d be lying to you if I didn’t tell you it was hard. I was pretty miserable, despite the fact that I got terrific care from the medical staff and the nursing staff and tremendous support from friends and family. Every day when the doctor came through on rounds, I would ask him if I could go home today. And finally, after 30 days, I got the affirmative.
It was great to get home. But I was REALLY weak once I got here. For about the first two weeks, everything I did was an effort. It’s hard to describe. I wasn’t like sleepy tired. And it wasn’t like the fatigue of having worked out too hard. It just felt like getting out of my chair required preparation. Even just to walk to the kitchen for a drink of water. But it’s been a few weeks since then and as I write today – the 4th of July – I’m feeling much stronger. I’m have more energy. I’m able to walk about ½ mile without much fatigue. I’m eating and sleeping normally. And little by little I’m starting to feel like myself again. I’d say that day 42 out of 100 is a pretty accurate gauge…I’m about 42% of feeling back to normal.
I’m still somewhat limited in that I don’t have a completely bullet proof immune system, so I can’t be in places where there are a lot of people yet. I can’t go to a crowded movie theater. I can’t be around my grandchild, since 2 year-olds are little germ factories. But overall, I’m feeling good about things. Just a bit impatient about how quickly I’d like to be back to normal.
Happy 4th of July!
My transplant day was moved up to tomorrow (Tuesday). I’m not 100% sure I can explain why, but it has something to do with the fact that the donor product is a little smaller than anticipated and also with the fact that they want to remove plasma to reduce any potential for trouble due to different blood types (I’m AB+ , Donor is O+). And I’m told that the fresher the better, so since it’s here and I’m ready, no sense putting it off an extra day. So the entire schedule is being advanced by one day.
I’m feeling fine right now, despite having received a butt load of chemo over the past four days. I’m as ready as I’ll ever be. Current projection is that I’ll feel pretty crappy starting Friday. Fever and chills as my body recognizes the intruding cells as an infection and tries to fight them off. Next week, I’ll have no immune system, so I’ll be warding off visitors for a few days just to be on the safe side.
(A little drum workout to accompany this post)
It’s now been a year since I was diagnosed with B-cell acute lymphoblastic leukemia. It’s been a very long year that included 12 rounds of heavy chemo, pneumonia, a cardiac arrest, a life-threatening sepsis infection, hospitalizations for neutropenic fevers, multiple blood and platelet transfusions, and way too much hospital food. Through it all, I was blessed with the support from a network of friends and family and first-rate medical care…for which I am eternally grateful. In many ways, I feel fortunate.
Now it is time to climb the next mountain. I will be admitted to Cedars on Thursday May 16 to begin the process of receiving a stem cell transplant. What follows is what I intend to be a realistic and dispassionate overview of what’s ahead for me. I try to keep things I post here skewing to the positive. And while I think the path is still encouraging, it is a bit rocky. So, this is a warning about the unvarnished nature of what follows.
Here’s how it will go…..
- On Thursday, I’ll receive some very nasty chemo that will wipe out my immune system. The greatest level of discomfort at the outset is the possibility of mouth sores…often quite painful…that are mitigated by sucking on ice chips.
- For the next several days, I’ll receive some additional chemo.
- I’ve been advised that on Monday, May 20, the donated cells will arrive.
- On Tuesday, May 21, I’ll undergo an hour or so of full body radiation..which is primarily intended to prepare my body to receive the foreign cells. I’m told this is usually pretty benign.
- On Wednesday, May 22, the donor’s cells will be transfused into me. This is the actual transplant, although the procedure itself is rather anti-climactic. Nothing more than bag of cells connected to my PICC line for about an hour.
For the following several days, I’ll receive various drugs that attempt to mitigate rejection of the foreign cells. The nasty effects of the chemo typically kick in about 7 – 10 days after I receive the nasty chemo…meaning I’ll feel pretty crappy during the week between Memorial Day and the end of May. I’ll be weak and possibly nauseous. I’ll have zero immunity until the donor cells engraft…which they slowly begin to do over the ensuing weeks.
I’m told to plan on about a 3-4 week hospital stay. Followed by about 100 days of rest at home where I’ll be slowly recovering.
Clearly all of this involves risk. Specifically:
- It may not work. The odds are decidedly with me, but if it doesn’t work, I’ll need to consider several “salvage” therapies that are newer and not necessarily proven.
- There is a risk of some rejection of the foreign cells. I’m told the medication provided post transfusion does a good job of mitigating these risks. There are two levels of risk
- Chronic symptoms, such as dry eyes or skin rashes. About ½ of transplant patients experience these symptoms. They can be minor to not so minor.
- More acute symptoms, such as contracting an auto immune disease such as lupus or severe arthritis or some organ failure. These are less likely, but are certainly a risk.
- There is some risk that I’ll get an infection while I have no immune system which could be life threatening.
That’s the Steven King version, though. I’m moving forward with confidence but I’d be lying if I didn’t admit to being somewhat anxious. I worry about how rotten I’m going to feel for the next several weeks. I do NOT look forward to spending 3-4 weeks in a hospital room. Of course, I have concern about how well the procedure will work. I’m concerned about the rejection effects. And, of course, I’m worried about coming out of this OK.
I’m not sure how much energy I’ll have over the next several weeks to post updates. But I’ll update you as I’m able.
I do think I’ll be OK. Maybe a little banged up, but generally OK. Keeping my fingers crossed…and even a few toes for this one.
Sunset at Key West
Enjoying a two week respite between immunotherapy sessions. I’m presently treatment free! We took advantage of this gift by stealing off to Florida for a few days in Key West, followed by a few more days celebrating the Passover holiday with relatives in Boca Raton. I’ve been able to bike and swim and kayak and enjoy the Florida sunshine unencumbered by chemo or tubes or any meds. My hair is even growing back! And there is good news on top of that….my latest bone marrow biopsy results put me back into remission. Specifically I’m once again negative minimum residual disease (MRD-), meaning that the immunotherapy is working and no active cancer cells are detectable. This is decidedly good news as it bodes well for the success of the imminent transplant. But, alas, it’s not a cure. The plan remains in force. I’ll be reconnected to the fanny pack for another month of immunotherapy starting on Tuesday, followed by the transplant sometime in early June. Once that starts, I’ll be pretty sick for awhile as I’ll be getting heavy chemo and radiation to wipe put my cancer and replace my immune system with bone marrow stem cells from the donor. But for now, I’m feeling great and despite the resumption of the immunotherapy, should continue feeling good until the transplant. The immunotherapy has been pretty easy to take and dealing with the fanny pack is not too intrusive. So I’ve got another month or so to live it up.
Hope you are enjoying your Passover/Easter holiday!