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.

Phew!

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

Downhill

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