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.

Tuesday, August 8, 2017

RIP Big Boo

Read the news that Don (Big Boo) Baylor passed away.  He was a great baseball player and bravely fought multiple myeloma for 14 years.  In 2014, his team, the Los Angeles Angels celebrated what were then the only MVPs in club history by asking Vladimir Guerrero to throw out the ceremonial first pitch and Baylor to catch it. Guerrero’s throw was low and away, and Baylor’s right ankle gave way.  He limped off the field and was taken to the hospital where he learned his leg was broken.  It was the cancer, of course.  This is sad news, indeed.  He was a great player and a great human being.
As for me, a few updates.  After suffering from some nasty side effects (frequent diarrhea and muscle cramps) I visited with Dr. V and he suggested we take a medication break.  So, the Revlimid is suspended for now and I’m only taking Prednisone – every other day.  I plan on visiting with Dr. V again when I return from a vacation at the beginning of September and at that time we’ll determine whether to back to Revlimid, try something else, or just stay with a steroids-only regimen.  Dr. V did say he has several patients who had gone to steroids only and were doing well.  That would be wonderful, of course.  But obviously I’ll want to stay with the best regimen that maintains my remission even if it means dealing with some side effects.  So…we’ll see.  Meanwhile, I’ve been off the Revlimid for about 3 weeks now.  The side effects have diminished considerably and I’m also sleeping a lot better.  I was waking up in the middle of the night previously…unable to get back to sleep.  This could be due to the medication adjustment or to the fact that I’ve begun a practice of daily meditation.  Whatever it is, it’s nice.

Thursday, June 1, 2017

A Long Overdue Update

First of all, I’m doing great, thanks.  Been getting quarterly checkups and all my numbers are good.  No evidence of cancer cells in me.  So…as long as what caused it to happen doesn’t cause it to happen again, I’m good.  Thanks to everyone for their thoughts and prayers and efforts to fight the disease through research and funding.  I am eternally grateful. 

I retired from work exactly one year ago today.  I immediately went into training for a bicycle ride from San Francisco to Los Angeles in support of the Arthritis Foundation.  I completed the ride in October and it was a spectacular experience.  The commitment to exercise resulted in my losing about 15 pounds.  Haven’t felt this good since my college days!  And, as a byproduct, I was able to jettison many of the medicines I had been taking.  I’m no longer on statins to control cholesterol.  My HDL, LDL and triglyceride numbers are all within the normal range without the meds.  I also was able to get rid of anti-depressant medication and reduce my blood pressure control meds considerably.  And although the steroids I need to take as part of my MM treatment sill result in some increased glucose levels, it was agreed that I could safely eliminate metformin from my medicine regimen.  (NOTE:  Don’t try to do ANY of this yourself without talking to your doctor!!!!!).  As for MM meds, I still take Revlimid and Prednisone…. which almost seems like a rather quaint approach given all the new med coming out.  But the general agreement is that “as long as it ain’t broke, don’t fix it”.  Plus, I’m not having any real bad side effects.  The one fail…I tried to get off of my reflux meds.  Ended up in the ER.  Looks like those will be around for the long terms. 

Bottom line to all of this...Exercise is good!

Retirement suits me well.  I know some people worry about what they will do with themselves if/when they stop working.  My experience has been just the opposite.  I sometimes muse that I should consider going back to work so I don’t have to work so hard.  I keep busy with my daily exercise routine…which is actually anything but routine…alternating between bike riding and tennis with an occasional hike or yoga session thrown in.  I volunteer with several groups…, most notably the UCLA Hospital Institutional Review Board (IRB) (at the suggestion of Dr. Gottesman for those of you reading this from the Downstate program).   In this role, I review clinical studies in oncology for ethical compliance. 

I did come down with a case of shingles recently…which was no fun at all.  Most common question was…did you get the vaccine?  The answer is…. yes, but over 10 years ago.  And I’ve been advised against getting the vaccine again because it involves a live virus and since MM meds suppress your immune system, it’s a bad idea. So, I ‘ve had to take my chances and my number came up.  Here again, don’t let my experience dictate yours.  Talk to your oncologist about shingles.
That’s all for now.  I will try to be more frequent with updates.  But I always say that, right?

Friday, January 8, 2016

Wall St. Journal on Myeloma

First of all, my apologies if you are concerned because I haven't posted anything in a long time.  For the purposes of this blog, you my assume that no news is good news.  I think I communicate with most of you on other forums, so I'm hoping it comes as no surprise that  I'm doing great.  The myeloma remains in remission. My number continue to be good.  And while the word "cure" is not one typically associated with this disease, there is no evidence of any bad cells floating around in me. long as what caused it to happen doesn't cause it to happen again, I'm in good shape.

As of now, I'm on 10 MG Revlimid and 25 mg Prednisone.  For those of you in the know, 10 mg is still a therapeutic does of Revlimid and Dr. V admits that he is being somewhat aggressive with my treatment.  He did agree to reduce it from 15 MG when I complained of some digestion issues.  The Prednisone is a welcome alternative to the more commonly used steroid, Dexamethasone.  It is much easier to take as it does not have the wired/tired extremes associated with Dex. It also doesn't make me into a raging manic (which Dex does) and it doesn't seem to affect my appetite.  Aside from the digestion problems, which have not dissipated with the lowered dose, the only real side effects I am aware of are occasional cramps in my hands and feet.  But they are infrequent and mostly tolerable.    All in all, I'm very pleased with my state of affairs.

This week, the Wall St. Journal printed a very well written article on Myeloma.  Accompanying the article is a video with most of the same info that I just stumbled across from 2013.    I'm providing links to both here.


In the video, Dr. Brian Durie, whom you may recall was the 'tie breaker" when I was trying to decide on whether or not to have a stem cell transplant,  says two interesting things:

  1. 1) Average life expectancy is now up to 7 years (from diagnosis, I presume) .  As for me, I was diagnosed in July 2006, so I'm approaching 10 years.
  2. 2) He expressed optimism that a "cure" is actually achievable.  The "C" word is being bandied about now by the two research based foundations that focus on the disease, and by some of those who treat the disease, most notably the ones currently or formerly associated with the UAMS Myeloma Institute who promote a Total Therapy program which I describe as a "kitchen sink" approach intended to wipe out the disease in their patients.  

My transplant was on February 7, 2012, so my 4th birthday is coming up in less than a month.  I feel good and extremely grateful to be where  I am

Saturday, October 19, 2013

Keynote Address

Sorry if I caused any concern by not posting anything for awhile.  I'm in sort of a "no news is good news mode."  But be assured I continue to do well.  I'm taking my Revlimid and Prednisone as prescribed and having no significant side effects.  Blood tests reveal no evidence that the disease has returned.  So I'm cruising along in a comfortable remission.

I was honored to be asked to deliver a keynote address at a celebration event for transplant survivors last week, which accompanies this post.  The event, held at the Skirball Center in LA, was organized and paid for by the head of the Cedars Sinai transplant program.   About 500 people were in attendance, 90% were transplant survivors and family.  Not all were myeloma patients.  And there were many who, unlike me, had allo transplants (requiring donors).

The address is about 6 minutes long.  It is upbeat and positive, as fitting the occasion. I'd like to advise my fellow myeloma sufferers that I struggle with how best to relay my good fortune when so  many of you have a much harder road.  I do feel particularly blessed with how well I've done and I attempted here to simply tell my story...with the thought that it can provide some semblance of hope for those that aren't as fortunate.  Susan felt i glossed over a lot of the difficulties I encountered along the way.  Maybe so.  But be assured that I have not lost site of how difficult the battle is and can be for those who have not had the good fortune that I enjoy.  My heart is very much with you.