Tuesday, July 30, 2019

Liberation




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. 

Thursday, July 11, 2019

Day 50

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. 


Thursday, July 4, 2019

Day 42



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!