Friday, December 21, 2018

A Restful Pause

(click the link above to hear my favorite holiday song while you read this update.).  

I’ve completed Round 5 of HyperCVAD. One more round to go…. consisting of two hospitalizations…and treatment will be finished.  I endured another bone marrow biopsy on Tuesday.  These are painful but necessary procedures.  Results should be available right after Christmas and I fully expect they will be consistent with the last 3 - that I am still MRD negative…meaning no detectable cancer cells.   Meaning the treatment is working.

The last couple of weeks have not been without complication. Last week, I spiked a fever and had to be admitted to the hospital for treatment.   My blood numbers were extra low…which resulted in this neutropenic fever.  Essentially, the cumulative effect of the chemo was hammering my bone marrow so hard that it caused the fever.  I was hospitalized for a couple of days…received 3 units of blood and a unit of platelets to bolster my immunity.   All of this was not unexpected or inconsistent with the ongoing treatment.  I went home after a couple of days…feeling fine and today I continue to feel great. 

However, in consultation with Dr. M, it was determined that I would do well with an additional break from chemo to build up my strength and get my blood numbers up so I can fight another day.  I was actually scheduled to be back at Cedars as of yesterday to start my 6th and final round of chemo, but that will be delayed until after New Year’s…Jan 3rd to be exact.  This gives me a good long break with no treatment and the gift of a very restful holiday season here at home.  It is the longest I’ve gone without chemo since May.  It does push back my final two hospitalizations a bit, but I’m actually relieved to have the break.  My body has been pretty beat up.  My numbers are already improving and I should continue to improve throughout the rest of December. 

So I’m really looking forward to the next couple of weeks.  Celebrating Christmas in the usual manner (movies and Chinese food) and a small NYE gathering at home. 

Whatever your holiday plans, I sincerely hope you enjoy the time and are able to observe treasured traditions with family and friends.  I wish you Joy!

Thursday, November 29, 2018

False Alarm!

Had a very scary morning.

I was getting packed up for my scheduled 5b admission this morning when the phone rang.  It was Doctor M, my oncologist, calling to ask “are you coming?” I told him I was planning to be there for admission this afternoon.  He replied that I had an appointment with him in the morning. I responded I wasn’t aware of it, but that if I came in this early to see him, I would have to wait around the hospital for several hours before my bed would be ready.   He said he wanted to see me as soon as possible and of course I asked why. He then informed me that my last blood test showed my white blood cell count had gone from 3 (low for most people but acceptable for a chemo patient) to 38 (high end of normal range is 11).   This caused him to be very concerned that the differential was caused by multiplying leukemia cells. In other words, it was likely that I was in relapse. He tempered the news by adding that a perfect donor match had been identified….so the transplant was potentially back on the table.   He wanted me to get to the hospital right away. Recheck my blood. Undergo a bone marrow biopsy to confirm or dismiss the relapse, and discuss where we go from here.

I got to Cedars and was met by my nurse...who was holding back tears as she took my blood sample.  (She was right next to the doctor when he called and was aware of the bad news. Talk about caring caregivers!  God bless her!). I was then escorted into the waiting room to cool out while Doctor M reviewed my blood report.  After about 20 minutes, he ducked into the room, smiled, and said “looks like a false alarm.”

My white cell count had dropped to 7.   If there was active disease, it would have gone way up from 38.   So, the conclusion is that the neupogen injections I’ve been receiving were responsible for boosting the white count.   (Neupogen is intended to do just that). There were some things that led my doctor to suspect that the increase was more than just the neupogen effect, but those proved also to be false indicators.

So, I’m fine.  But I had several hours to contemplate the prospect of relapse.  It was very scary.

As for the donor, Doctor M wants to evaluate my condition after this hospital stay with a bone marrow biopsy.  If I remain MRD negative, the plan would be to finish off the chemo and move into maintenance mode….while keeping the transplant in the quiver.   If the biopsy reveals even 1 cancer cell, the transplant would be more urgently pursued. But there is no reason to believe that I’ll prove to be anything but MRD negative.   

So, I’m now in my hospital room awaiting round 5b drugs and feeling very relieved.  Still hoping to be home Monday or Tuesday.


Quick Update

Checking back into Cedars today for Round 5B.  The past 4 “B” arms have been comparatively easier and shorter than the “A”s.  Primarily because I am able to pass the methotrexate infusion relatively quickly, which is the criteria for getting my release.  So…if following form, I would hope to be home by Monday evening.  Although Tuesday may be a more realistic goal.  We’ll see.

This has been a rather rough respite since my last release.  I suffered from a lingering cold which finally got antibiotic treatment.  While the antibiotics seem to be clearing the congestion, they have caused gastro-intestinal problems (I’ll spare you the details), so things have been rather uncomfortable.  I kind of feel a bit cheated as far as my recovery time.  But nevertheless, I’m looking forward to checking off this hospital stay.  Once I do, there will be only two remaining.  So the end of treatment is now clearly in sight.

I’ll be at Cedars for the first few nights of Hanukkah.  Not the worst place to be, as there will likely be some festivities.  Our family celebration will be observed when I get home. Meanwhile, Happy Hanukkah to all my fellow festival of lights celebrants.  And while I’m at Cedars, I plan to watch Adam Sandler’s Eight Crazy Nights for about the 300th time.

Thursday, October 18, 2018

Mile 14

Fall Colors in the Eastern Sierras

Preparing to return to Cedars today for Arm B of Round 4 of Hyper CVAD.  For those of you keeping score at home, this means I’ll have 4 more hospital admissions after this one.  If all goes according to schedule, my last day at Cedars will be December 30.  So, I should be able to celebrate the New Year in style!  Susan came up with the analogy that we’re on about mile 14 of a 26-mile marathon.  Still a long way to go and we have to suck it up.  But we’re still on our feet and covering ground and keeping the finish line in site.
Results from the most recent bone marrow biopsy remain encouraging.  This is my 3rd straight negative Minimum Residual Disease result.  This means that even with the most sensitive instruments, there are no detectable cancer cells in my marrow.  Which indicates that the treatment is working.  It doesn’t necessarily mean I’m cured and it doesn’t change the plan to continue getting treated.  But it’s a good result. 

I feel great today, as I always do on the day I have to go back for admission.  I’ll probably feel pretty crappy again as I absorb the chemo cocktail that is waiting for me. On this round, I’ll be receiving cytarabine and methotrexate.   They are both pretty gnarly chemos, but I usually get through the course in about 5 days…so I should be back home late Monday or early Tuesday.  It does seem like the cumulative effect of all this treatment is making me weaker, but not on a grand scale.  On my worst days, I get a little queasiness and have very low energy.  I get a bit dizzy when I’m standing, but never to the point of passing out.  This is more pronounced during the middle of the day for some reason.  All to be expected as my bone marrow is getting hammered pretty hard by all this stuff.

Susan and I escaped for a few days for a drive to the Eastern Sierras to chase some Fall color.  We stayed in Bishop, saw some lovely yellow and amber leaves, breathed in some crisp fresh air and found some great places to eat…both roadhouses and fancy dining.  I handled the altitude (up to 9000 ft)  just fine.  I’m not strong enough to do any hiking, but I was able to walk around a bit and certainly enjoyed seeing the sights while driving.   It was nice to get away!

Tuesday, September 25, 2018

Gearing up for Round 4

Welcome back, fight fans.  We’re about to initiate Round 4 of a scheduled 6 rounder between the skinny kid from Wisconsin and the Big Bad Hyper C-VAD monster.  It’s been a tough fight so far.  I’ve absorbed numerous body blows.  I’ve even been knocked to the canvas a couple of times, including Saturday night when low immunity levels combined with a fever of 102.4 led to an unscheduled visit to the ER where we learned that I had contracted a urinary tract infection…which was treated with antibiotics and I was mercifully sent back to my corner (sent home!). But I’m back on my feet and ready to fight again.  I’ll be checking into Cedars on Thursday for +/- a week for this round.  Also heading up there today for another bone marrow biopsy to hopefully confirm that I’m still in remissions…which would mean I’m currently ahead on points and on track for winning the fight. So, stay tuned.  There is plenty of action left in the upcoming rounds…and as Howard Cosell always said “this kid can take treeeMENNNNdous punishment.”

Special shout out to Vicki, Bridgette and Kaye for having fought off some crazy afflictions.  Kaye is back on stage in Austin leading the Kaye Pasa Trio.  Bridgette is galivanting in Europe.  And Vicki was seen celebrating with friends at Big Chill 2018.  You are all tough as nails and living miracles.  So happy for all of you!

Wednesday, September 5, 2018


Throwback photo.  From last year.

Since I have a lot of time on my hands these days, I get to contemplate pretty useless things.  For example, the word “downhill”.   It is one of those words that can mean one thing in certain contexts and the exact opposite in others.

“Going downhill” can mean deteriorating as in “he’s going downhill”.  But to a bike rider, “going downhill” means things have gotten easier.  You’ve pedaled hard and made it to the top of the hill and now you get the reward of a downhill.

So, I’m using the bike rider context to point out that I’ve reached the halfway point of my treatment and it should be all downhill from here.  This whole thing started 4 months ago and as of Sept 1, I have 4 months to go.  The forecast is that I will complete the Hyper CVAD treatment on December 30.  So, by this reckoning, I’m on the downhill side of the treatment.  It’s still a long road, but at least the end is closer than the beginning. 

I’ll be checking back into Cedars tomorrow.  For those of you keeping score at home, I’ll be getting Part B of round 3.  I expect I’ll be there until Monday or Tuesday, which means I’ll be celebrating Rosh Hashanah (Jewish New Years) in the hospital.  There WILL be a service at the hospital chapel and if my immunity levels allow, I’ll be able to attend.  If not, I can watch it on the TV set in my room.  This could be a test of my piety somewhat equivalent to Job.  If I can stick it out for the whole service without switching to SportsCenter, I’m truly a pious man.

Shana Tovah to all. 

Thursday, August 16, 2018

Wednesday, August 8, 2018

Plan B

So, it doesn’t appear that a suitable donor will be identified.  In a previous post, I mentioned that a 9/10 match had been identified.  However, the mismatched protein was a very significant one and to move forward with that donor could result in my body rejecting elements of the transplant and creating some significant quality of life issues.   The 10/10 candidate could not be located.  So, barring a miracle, it looks like we’ll be moving on to Plan B.

Plan B is a continuation of the Hyper CVAD chemo regimen I’ve been following.  I’ve completed two rounds of it so far and the results have been favorable.  I’m MRD negative…meaning that biopsies cannot detect any chemo cells. However, this does not mean that it won’t come back.  So additional rounds of chemo would be necessary.  Specifically, the recommendation is that I have 4 more rounds for a total of 6 rounds.  This would mean that I’ll be in and out of Cedars from now until about the end of the year.  The hope is that I’ll remain MRD negative throughout this period and well beyond.  Potentially, the chemo could cure the cancer.  Problem is, we have no way of knowing.  If it doesn’t come back…I’m cured.  But if it does, then alternative therapies would be introduced.  The first would be an immunotherapy -where specific drugs and taken to induce an immune response -my body fights the cancer instead of the chemo.  The second would be CAR-T therapy – a novel approach you’ve probably seen on shows like 60 Minutes where your own T-Cells are removed, weaponized with specific proteins that are programmed to search and destroy specific cancer cells without harming other cells, and reintroduced.  This is very experimental and, in fact, is currently only approved for patients under age 25.  But that will change eventually, so the strategy could be to kick the can down the road long enough for the rules to change and allow CAR-T for older patients.
According to my MD, there are studies showing that patients my age do about as well with ongoing Hyper CVAD as they do with donor transplants.  That is largely because both are less aggressive than they would be for much younger patients.  As it is, my chemo is reduced by about 25% to accommodate for my age.
There is a significant advantage to going the continued chemo route.  No potential for my body cells to reject the donor body cells…a condition knows and graft vs host disease (GVHD).  This is what I was referring to earlier.  There is no way to prevent this from happening.  It is mitigated considerably by finding a perfect donor match.  But the potential is always there no matter how good the match.  And the symptoms can range from minor things like constant dry eye or skin rashes to major things such as Lupus-like conditions, kidney or lung issues or other things where I’d be unable to get out of bed.  Needless to say, the potential for this would cause anyone great concern.  And since it appears that my chances for a cure are about the same without taking on this risk, I’m actually rather relieved that we are shifting over to Plan B.

The downside of Plan B is that I’ll be getting a shit ton of treatment.  But, if it works, I’ll eventually be back to normal.  Cured, in fact. It means being admitted to Cedars every 3 weeks from now until the end of the year, followed by 6 months or so of outpatient treatment and then periodic follow up.  And that is if it works. 

Needless to say, this disease is a very difficult one to live with and treat.  But I feel comforted that I know what I’m getting in to and don’t have to worry about the ravages of GVHD.  So I’m moving forward with some optimism.  The most positive prognosticator is that I went MRD negative pretty fast and that I still am.  The scary part is that I will never know if I’m cured and whether or not I’ll relapse.  No way to tell.  But the longer I can keep going, the more potential there is for novel treatments if I do relapse.

So, that’s where things stand at the moment.  Next hospitalization for the beginning of Round 3 will be next Thursday Aug 16. Until then, I’m home and gaining strength from the last chemo.  I am receiving Neupogen shots to help with my immunity and blood transfusions when necessary (had one yesterday). 

A lot to digest here.  Feel free to comment or hit me up with questions.

Saturday, August 4, 2018

Just Beachy

Not much to report on this lovely summer day.  I’m enjoying being home between chemo sessions.  Next session will start in about two weeks. 

On Wednesday night, I was invited to see Mission Impossible.  The movie was fun (if you see it, let me know if you agree that old Tom looks kind of funny when he is running after the bad guys) but it was even better just to be out with some friends on a balmy Southern California evening.  I’ve made a personal pact to do more “getting out”.  Today, I went down to the beach to attend the local surf festival.  The heat and all the walking around was a bit taxing, but I’m still glad I did it.

August 1 marked 3 months since I was diagnosed.  That’s 3 months of shuttling back and forth between hospital and home and being loaded up with the poison that will save my life.   This will probably not go down as the best year I’ve experienced.  But next year could be.

Hope you are enjoying your summer.

Friday, July 27, 2018

We may have a donor!

Shabbat Shalom
(Cedars provides a Shabbat box for patients on request.   It contains two battery operated candles, a challah and a box of grape juice.   Everything I need to ring in the sabbath!)

Good news. We may have a donor!

We received a response from a prospect in New York.  He’s a 9/10 match and I’m told that the mismatch is not an important one.   So, next step is to get a blood sample and confirm the match. Meanwhile, the registry has identified a match in Israel who would be a 10/10 match.   But he hasn’t responded yet as to his willingness to be a donor. I understand it is preferable to have a couple of potential donors to choose from, so they want to give it a couple of weeks before deciding on the first guy.   But if all goes well, we could be scheduling the transplant for late September/early October. Stay tuned.

Meanwhile, I’m back at Cedars for part B of round 2 of HyoerCVAD chemo.   For those of you keeping score, I’m getting methotrexate and cyteribine this time around.  I’ll be here til Monday or Tuesday, barring any complications. (Demi Lovato is also here somewhere.  Haven’t seen her). I’ll be back in a few weeks for round 3, but if all goes smoothly with the donor, that will be the last of the chemo.  

In other news, results from my latest bone marrow biopsy are the same as the last one.   No detectable cancer cells and my status is MRD negative, which means I’m in remission….which is where I need to be before the transplant.   So, everything seems to be on track.

Wednesday, July 18, 2018

Registry "oops" and treatment update

First of all, apologies to all who tried to register for the bone marrow registry – only to find that the cut off for being a donor is under age 60.   I didn’t know that when I posted it.  I do appreciate your willingness to check it out, though.  If I may be so bold….if you have offspring or friends that might be the right age and willing to check it out, please pass on the link.

Mercifully, I’m home for the next couple of weeks.  I spent 8 days at Cedars getting chemo and definitely experienced some major hospital fatigue during that time. It was a rough stint.  Among other things I developed a very uncomfortable skin rash, my heart rate dropped at one point to 35 BPM causing all kinds of concern which proved to be unnecessary, my feet swelled up several times to where walking was uncomfortable.  I was connected to an IV pole most of the time and had to drag it with me whenever I went to the bathroom, shower or for a walk around the unit.  I had two lumbar punctures (where they infuse chemo into your spinal fluid, which is where cancer apparently likes to hide – it doesn’t hurt).  On one day, I was infused with each of the following:

·         Cytoxan (chemo)
·         Methotrexate (chemo)
·         Mensa (infusion to protect my kidneys from damage due to chemo)
·         Dexamethasone (steroid)
·         Insulin (to lower glucose highs caused by the steroid)
·         Adavant  (anti-nausea)
·         Lovenox (blood thinner)
·         Heparin (anti-coagulant)
·         Rocephin (anti-biotic)
·         Vimcristine (chemo)

And of course, there is typical hospital routine of being woken every 4 hours for vitals, blood draws, pills, etc.  Not to mention having to wear those awful hospital gowns and eating crappy hospital food when you don’t have much of an appetite to begin with.

Wah wah wah. 

So, I’m home now and feeling OK.  Somewhat weakened by all the treatment, but overall comfortable and happy to be here.

As mentioned, Ill be back to the hospital later this month…hopefully for just 2-3 days.  Meanwhile, the search continues for a transplant donor.  I’ve been advised that 3 individuals have been identified as 9/10 matches and there is one 10/10 match out there.  We are waiting to hear back from them.  

Fingers crossed.

Thursday, July 5, 2018

The Sh*t is Working!

(Sunset over Manhattan Beach Pier - 7/3/2018)

Results from last week’s bone marrow biopsy are encouraging.  In technical terms, it found negative minimum residual disease (MRD).  That means the test could find no leukemia cells floating around…. even with very sensitive state of the art measurement instruments.  This is clearly good news, it means that my disease is responding to treatment, which is huge.  But it doesn’t mean I’m cured or that treatment can stop.  In fact, I’m heading back Cedars today for 5 days or so of round 2 of Hyper CVAD chemo…. which is the same chemo cocktail I’ve been getting.

Despite this very positive result, the treatment path remains a bit murky.  Path one is to continue receiving chemo for about 6 months.  This is considered the low risk/low reward option.  Odds of achieving a cure are about 20%.  And there is no way of knowing if I’m cured.  Just have to live my life and hope that I don’t relapse.  Path 2 is to move forward with a transplant from a donor.  This is considered the high risk/high reward option.  If all goes well, it will result in a cure.  However, there is also the possibility that it won’t work and I will relapse and separately the possibility that I will contract Graft vs. Host disease, an auto immune response which is essentially my body rejecting the foreign cells. It could affect my quality of life.  The impact could be as minor as some dry eye discomfort or as major as a lupus like response that I would have to live with.  There is also a 3rd path…. a clinical trial involving weaponized T-cells from a donor that have been programmed to destroy my specific cancer cells.  It is very experimental. 

The plan is to get consults from my medical team and make a decision.  Don’t need to make a decision right away.  Meanwhile, the search is on for a suitable donor in the event we do chose the transplant option.  It usually takes about 3 months to complete this process. 

So, lots to think about.  Meanwhile, I’m feeling pretty good today.  Had a lovely 4th of July BBQ at home.  Got to admit, I’m a bit down about having to go back to the hospital today, but its only for few days so I’ll tough it out.

One other quick note….I contracted an infection last week and it was pretty hairy.  I happened to be at Cedars for the bone marrow biopsy.  But I spiked a 105 fever right after the procedure.  I honestly don’t remember anything that happened that day…I was out cold.  But Susan was there and I was a mess.  I was admitted to the hospital and spent two days of hell there fighting the infection. I was alternatively shivering convulsively and sweating profusely.   In the end, it turns out that the PICC line inserted in my arm had gotten infected and caused the infection.  They removed the PICC line, administered antibiotics and by the end of day two, my fever broke and I was fine and I went home on day 3.

Thanks again to all who have called, messaged, texted, visited and otherwise lent support.  It means so much and I appreciate it more than can be expressed. 

A final note.  My doctor said he is very encouraged by the Bone Marrow Biopsy result and is optimistic.  And so am I. 

Thursday, June 21, 2018

Solctice Update

Happy Summer Solstice.  Nominally the longest day of the year.  But it should be no surprise that for me, the longest day was May 2nd when I went to the ER to learn of my new diagnosis.

To be honest, I’m getting sick of being sick.  I’m actually having a good day today.  I bottomed out a couple of days ago when my immunity levels fell and I could barely stand up.  That was rectified Tuesday when I received a blood transfusion and went from weak to chipper in the space of about 7 hours.  That’s a long time to sit around and be infused, but the fates provided me with a Dodger/Cubs double header to keep me amused during the process.  Today, I’m still feeling strong and able to do most things without undue effort.

But even on my best day, I have to say I don’t feel right.  Today, for example, even though I feel relatively strong, I can only handle walking about 4 blocks before I need to rest.  I’m not much help to Susan around the house, although on good days, I’m able to prepare dinner, run some laundry and tidy up a bit.  I’m still encouraged that I’ll get through this.  But I wish the path to healing were straight up, rather than two steps forward and one step back.  Just being honest.  This is tough.

So, here’s where things stand.  I’m on a break between chemo session and just emerging from the worst of it.  I should be feeling good for about a week or so.  I’ve been going for biweekly blood tests and was able to shift locations from Cedars (19 miles, 1 ½ hour drive) to Redondo Beach (45 miles, 20 min drive).  But my primary care is still at Cedars and I’ll be going there on Monday for a bone marrow biopsy which will tell us where we are in terms of treatment and help direct us to where we go next.  If all goes as expected, the results will show that the cancer is responding to the treatment and the plan to proceed with finding a stem cell donor will commence.  I’m told it takes about 3 months for the donor selection to take place and in the meanwhile, I’ll continue to receive rounds of chemo about every 3 weeks.

So, even though this post is less sunny than some, please know I haven’t lost sight of how fortunate I am overall with all the care and support I’ve received.  So many of you have reached out, sent lovely sentiments, items of cheer, visits and offered to do whatever you can to help. 

Actually, there is something each of you could do to support me should you feel up to it.

To date, I’ve received at least 3 bags of donated blood.  I will undoubtedly need more soon.  They work wonders. I have tremendous gratitude to the anonymous people out there who donated the blood I received. The need for blood is always there.  And if you would honor me with a blood donation, I would be extremely grateful.  It’s easy to do, of course. Just contact your local Red Cross.  

Thanks and stay tuned.

Sunday, June 10, 2018

Quick update: Sunday June 10

Back at Cedars for a few days, as scheduled.  I received two chemos….specifically methotrexate and cyterabine.  I need to stay here until the methotrexate passes through me, which they think will be around Tuesday. There have been a few minor challenges on this round.    I’m getting steroid infusions which cause my feet to swell up, sometimes painfully enough that walking hurts for awhile. So they treat it with diuretics that make me pee almost continually for a while.  I also get an itchy rash on my hands and feet and I really have to hold myself back from scratching it. But all minor stuff. I’m managing fine. Looking forward to some home cooking in a day or two.

Wednesday, June 6, 2018

Treatment update - June 6, 2018

The final results of my bone marrow biopsy are in.  They reveal no detectable chromosomal anomalies.  Consequently, there are no specific targets for targeted therapy.  This is neither good nor bad news.  It just means that the current protocol will be continued…and somewhat obviates a donor stem cell transplant.

So, here’s where things stand.  I’ve completed one round of what is called Hyper-CVAD chemo.  CVAD represents the chemotherapies I’ve received so far…..Cytoxan, Vinicristine, Adnam and Doxorubicin.  I will be going back to Cedars today to receive two more chemos….methotrexate and cytarabine.  I’ll be there for 3-5 days marinating in these new therapies.  I’ll be released when the methotrexate passes through my system.   But I need to stay in the hospital so they can monitor how the drug is affecting me.  It has can negatively affect renal function, so they want to monitor me while it is circulating my system.

Additionally, while I’m there, they will perform a comorbidity index  (CMI) to make sure I’m strong enough to withstand the transplant.  As I’ve said earlier, this will be different from the transplant I received 7 years ago in that it is an allogenic transplant…. I’ll be receiving cells from a donor.  So, the process will involve tapping a registry of available donors.  Meanwhile, there is a lot of blood typing and matching that will take place.  The process takes several months.  I’m told that Caucasian patients have very good luck in locating a very good match. BTW:  These match searches often begin with identifying close relatives.  But the search is typically limited to siblings and offspring, where the odds of a match are about 50%.  My sister would not be good match because of her age and overall health.  And my offspring are adopted, so they don’t qualify.  Moving beyond that to cousins, etc. drops the odds to about 18% of a good match…so they typically move right to the registry instead of pursuing that route.

While I’m moving toward the transplant, I’ll continue to receive the chemo.  I’ll alternate between the Hyper-CVAD and the stuff I’m getting today.  I’ll get infused about every 21 days.  Enough time for the cancer to do it’s thing and for me to bounce back.  I bounced back pretty well from the first round.   My immunity numbers are almost normal…meaning I’m less susceptible to infections and my energy levels are increased as my red blood cell count goes up.   Today, I feel about 80% of normal.  It will be short lived, as I’ll be getting the new infusions starting later today. 
So, the good news is that I’m feeling pretty good and responding well to treatment.  The bad news is that this is all going to take awhile…several months.  But the ultimate good news is that I am on the road to a cure.  And…as a bonus…I was advised that the allogenic transplant has a good chance of curing the myeloma also.  So, on balance, this is good news and I remain optimistic.

Thursday, May 31, 2018

The Ritual

Pretty much on schedule, clumps of hair began showing up in the drain….so the ritual of the buzz cut was celebrated yesterday.  FYI:  For safety and aesthetics, it is best not to go down to shiny scalp at the outset.  I good “Elvis goes to Germany” military cut prevents things like sun screen and accidental infection.  And I must admit, I do like the fact that I can wake up in the morning, shake my head, and I’m good to go.

It’s been a tough few days.  Tuesday was particularly rough.  Following Sunday’s chemo infusions, my immunity levels dropped as intended…leaving me very weak.  With very few red blood cells to power me, I was dizzy.  I sported a grey pallor.  And my energy levels were pretty low.  I had a scheduled doctor visit and based on the results of my blood tests, they elected to transfuse some blood into me to bring me back to equilibrium.  It took a few hours, but it worked.  By the end of the transfusion, I had my normal pink glow and was able to manage my normal activities.  I’m a bit weaker today than I was right after the transfusion, but I’m getting around just fine.  I’m eating and sleeping very normally.  Pretty comfortable overall, although clearly it is cold up there when you don’t have a head of hair to warm you up.  But not to worry, I have a large cache of head coverings from the last go round.

Still quite a gauntlet of treatment on schedule.  I’m continuing the induction phase of the treatment, which is essentially the old school assault of classic chemo to search out and destroy all things that could be cancer cells in my bone marrow.  Healthy cells get swept up in this assault as well, hence my weakness.  I’m on a hiatus of a few days from the chemo right now. But I’ll be going in next week so they can evaluate when I’ll be strong enough to take on the second round.  If my immunity numbers are too low, they will wait a week or so before resuming.  If not, I’ll check back into Cedars for a few days of chemo.  Significantly, we are still waiting for the final results of my bone marrow biopsy which will contain info on my specific chromosomal makeup.  I’m not sure if I’m explaining this 100% accurately, but here is my best understanding….the pathologists are looking for specific genetic markers that define my specific form of leukemia.  If found, there are targeted therapies that can be applied to wipe it out completely.  If not, it is good to know that these markers are absent and other therapy approaches can be used.  So taking the results of the induction chemo that I’m undergoing right now, combined with the genetic information, my treatment should be a rifle shot to a cure as opposed to basically the same chemo treatment regimens that have been used for the past few decades.    

So, regrettably, I’m not close to the end of the treatment cycle and I will still have several hospitals stays and a lot of poison to absorb.  It won’t be much fun, but there is every reason to believe strongly that it will result in my getting back to my normal lifestyle in a few months or so.

Meanwhile….no major complaints.  My appetite is very good.  I’m sleeping through the night. I’m getting unbelievable support from people who check in on me, call and visit.  Susan has been a rock.  My medical care is top notch.  And I’ve got plenty of diversions.  So once again, thank you for all the good wishes and check ins.  Overall, please be assured I’m doing just fine.

Monday, May 28, 2018

Remembering Steve Taylor

Woke up this morning to the awful news that my friend and classmate, Steve Taylor, lost his battle with multiple myeloma.

Many of you who knew Steve will be surprised that he was afflicted with cancer.  Steve didn’t want people to know about it.  I found out through the UCLA  GSM grapevine and I felt that given that we shared this affliction, I would reach out to Steve.  Steve’s initial preoccupation with I called him was “how did you find out.”  Of course, I demurred on it and it took a bit of time to get past that boundary.  But eventually, I convinced him that collaborated on shared information was in our mutual interest and things settled down.  When I asked Steve about why he felt it was so important to keep things on the DL, he mumbled something about not wanting his clients to know he was anything but 100% capable.  But I never bought that.  I think it was just Steve being Steve.  Steve needed to be in control.  It was nothing more than that.

Steve called me last week when the word of my new cancer struggles got to him.  We talked and he filled me in on his situation…. of course, with the caveat that the information goes no further. (I do feel at this point that the statute of limitations has expired and that I can say whatever I want…. although in the back of my mind, I can hear Steve saying “Why are you telling people I’m dead?  That’s private!”)  To be honest, it was clear from our conversation that things were not going well for Steve, although I really didn’t get the idea that things were as desperate as they turned out to be.   So, we reviewed our mutual treatment protocols and I kept telling Steve to fight as hard as he could fight and I would do the same.  And then I got the info this morning that the angels took Steve.  (I can only imaging how that conversation with Steve and the angel went down.  Steve telling the angel that his facts were totally wrong!)  It should be noted that Steve and I were pretty far apart on the political spectrum.  Steve’s perspective on things like homelessness were anathema to me…it seemed like his solution was about two steps away from putting them in space capsules and shooting them to the moon. (Clearly that’s not fair…it was far more nuanced than that.  Steve was always the smartest guy in the room.  He was always generous to his friends and family and those in his immediate universe…but his rhetoric on macro issues was far more to the right of the spectrum.)

This really should all be about Steve, of course.  But I have to make it about me to the extent that emotions are very raw on this subject.  It is always hard to learn that a fellow traveler has lost his battle. This one is particularly close to home, since Steve was such a close friend.  So, what does that say about my vaunted positive attitude and determination to fight and win.  Such news definitely takes some of the wind out of my sails.  But in fact, …. I understand that Steve had a particularly aggressive and treatment resistant form of the disease.   Cancer doesn’t come in neat little boxes. Everyone’s genetic makeup is different and some, like Steve, have chromosomal abnormalities that handicap them in fighting the fight.  To this point, no such abnormalities are showing in my genetics…so the fight continues.   But be assured…this is a sad sad time and my heart hurts for Steve and for everyone that cares about him.  He’ll be in my heart as long as I have breath.
Quick update:  Nothing much new to report.  I’ve completed the first round of chemo and am resting comfortably at home.  I’m eating and sleeping well.  I get easily fatigued, but it’s not too bad.  I just have to take things slower.  Today…Monday May 28…is a no chemo day and I’ve had a lovely breakfast and am looking forward to getting some fresh air (I can walk around the block pretty well) and some visitors. 

God bless you Steve.  I miss you, love you, and a will remember you.

Thursday, May 17, 2018

Hospital Rhythm

There is a definite rhythm to a long term hospital stay.  It is not like life on the outside. The beat is driven by food delivery, doctor rounds, med administration, taking of vitals, tests, blood draws, etc. All of which can happen at any or night.  Sleep is ancillary. If you are scheduled for vitals at 2 pm and your blood draw is at 3, so be it. So you learn to catch little cat naps of an hour or two when you can.

I’m currently sitting comfortably here at Cedars Sinai….by all measures a first tier hospital.  I’ve got fractured ribs (don’t ask!) and a line of chemo therapy in my PIC line delivering what we expect to be a knockout punch to the leukemia cells.    Earlier today, the also set me up to toss some chemo directly into my spinal fluid….which is apparently a place they like to hide. It did’t hurt at all

Chemo began last night around 10pm.  It was proceeded by a consent form reading that was apparently written by Steven King about all the possible side effects of what I was about to endure.   It definitely scared the crap out of me, but it went better than I had feared. The only hiccup involved severe tremors that began around 2 pm. They responded by suspending the chemo, giving me some meds, and turning it back on at a slower rate.  They also hopped me up with IV Benadryl (imagine!) and some Adavan that succeeded in conking me out so that I actually got pretty close to a normal night of sleep.

So, as of now, I’m resting comfortably.  Not having any bad reaction to the poison pulsing through my body.  And looking forward to moving things forward so I can get home and reboot my life.  I’m again very grateful for all the kind support. It is my oxygen. Thank you all!

Monday, May 14, 2018

Calm Before The Storm

I was delighted to receive a pass to go home for a couple of days this weekend.  Since they don’t initiate treatment over the weekend and I wasn’t being treated for anything, it was deemed that there was no reason to stay in the hospital.  So…for two glorious nights…I was able to sleep in my own bed, shower in my own shower and pee whenever I wanted to without having to unplugged from anything.  Now that the infection has cleared up, I’m feeling pretty close to normal.  I bit tired, but overall quite good.  I’ll be going back to Cedars later today to get another bone marrow biopsy and possibly start treatment.  The photo above is from yesterday.   Next one I post will probably be with a shiny pate.    Emotionally, I guess it’s fair to say I’m in the pocket. Being home helped my overall mood.  I’m anxious about what I’m going to have go through, but optimistic that the result will be a good one. I have a lot of faith in the team assigned to my case.  And the outpouring of support from all of you has been very comforting.  I truly appreciate it.

Saturday, May 12, 2018

Nasty Cousin

So, I was feeling kinda crappy.   It felt like I was coming down with the flu.   Violent shakes. Dry mouth. Overall malaise. So I covered up with blankets, drank Gatorade, and endeavored to tough it out.   But after a couple of days and admonishments from Susan to take this more seriously, I visited my primary care doc who examined me and said “I don’t like the looks of this.”  He got my oncologist on the phone and she didn’t like it either and they both felt a visit to the ER was in order. That was April 30. I did as I was told and went to the hospital.   It’s May 12 and I’m still here. Turns out I had a case of pneumonia. But there is more to it. The infection came about because my immune system was severely compromised. White blood cell count was about ½ of what it needed to be to fight off an infection.  Suspecting that perhaps I was in myeloma relapse, I was sent for a bone marrow biopsy. Turns out the myeloma wasn’t the problem. It was much worse. I am now afflicted with leukemia. Acute Lymphoblastic Leukemia (ALL) to be specific. Like multiple myeloma, it is a blood cancer.  It is not the same disease….and I’m not close to being able to articulate the difference, but suffice it to say it’s a nasty cousin. It quickly takes over your immune system, replacing good cells with cancer cells that do not protect you from infection and disease. It can be very aggressive and must be treated forcefully.  That means heavy doses of chemo. Unlike myeloma, successful treatment CAN result in a cure. But there are a lot of variables to consider in designing treatment….as there are specific genetic markers that can spell out the specific treatment protocols that can be more or less successful based on the chromosomal composition of the cancer cells.  At this writing, we are waiting for more pathology results that will dictate my treatment….but there is very little question that it will involve several weeks of in-patient chemo…..the really ugly stuff that will make me lose my hair, cause nausea, and make feel beyond shitty. Bottom line, I’m in for a tough fight for the next several weeks. But I’m steeled for battle and prepared to win.  

Emotionally, this is a blow as you can well imagine.  Apparently it came out of nowhere. A month ago, it may not have existed.  But suddenly, cells decided to mutate and boom… I am. It may or may not be related to the myeloma.  Perhaps more a by product of the transplant than the disease itself. But the fact is, I have two discrete forms of cancer.  Lucky me!

It’s upsetting to be sure.  Not how I planned on spending the summer of my 66th year on earth.  But the fight will commence and I have every intention of winning it.  But it really truly sucks.

Consider this a very abbreviated update.  I’ll fill in some of the spaces as I get the energy.  Consistent with my original design, this blog is primarily a cathartic device for me to manage the disease.  So thanks for tolerating the self indulgence and welcome to the new journey.