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.

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.

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.