Day 79 and Day 100 posts!

April 11: Day 79

I wrote this 22 days ago, but then didn't get around to posting it. Fills in some gaps in the story, so I'm posting now...

Health has been slowly getting better. I no longer have pleuritic breathing pain and I no longer have swollen ankles! Yay! So I can walk up hills and stairs, and everyday I get a little more coordination. This week I went down a few stairs without holding the handrail. That was a post-hospital first. But although my walking feet are back, my red blood cells are not, so I never really feel like going on a walk and when I do it feels like I’m taking a stroll at 15,000 ft, but without the killer mountain views.  Covid restrictions, like those in many of your towns, have made it a weird time to be living.  Walking in the neighborhood is certainly better: less cars and more people walking/biking-about make it more interesting.

The SCCA clinic has taken some restrictions, but none that have changed my life too much yet. Only one care-giver is allowed and now they screen everyone entering the building for symptoms (fever, loss of taste, cough, runny nose, etc)..  Supposedly they can do Covid-19 testing on site in one of the parking garages if someone needs it. Obviously, as a patient, if you have covid symptoms you're supposed to call ahead and your nurse will help you come up with a plan. Most people wear masks in the clinic, but certainly not everyone. They are encouraged, but not required yet. My dad and I wore bandanas as masks yesterday.  As a whole, the clinic has tried to restrict appointments to only the most necessary, and ones that can be done through telehealth. It has created a nicer feel in the clinic as it’s not as crowded.  I had my first zoom telehealth call with oral medicine this week and it was great. Saved me a trip to the SCCA and all I missed was them being able to do an oral exam. I thought for a sec maybe I’d have to show them my mouth through my iPad camera (should I brush my teeth before the call??), but they had decided that no exams were gonna happen through telehealth. Which makes sense and is for the better.  We mostly talked about GVHD symptoms and warning signs. She showed me about 15 pictures of oral GVHD through screen share and then asked if I wanted to see anymore. I politely declined. She sent a document over email in case I wanted to explore further. I haven’t yet.

Spring is coming in full force down here.  We’ve had some sunny days recently and Friday it peaked at 72 F which really felt like summer was on the way.  I’ve been spending some afternoons getting my drip watering system back up and running. I added 3 more lines over the winter, but only built out about 80%, so plenty to do back there.

May 3, Day 101!

I made it! Day 100 was yesterday.   Feels good to finally get here.  As the doctors promised, over the last 2 months many symptoms have gone away and my health has gotten better. Still doing the daily walk, and able to be up for chores around the house, and slowly able to do longer bits of Alpencare.

My main health issue at this point is still the low hematocrit, which is hanging around 26. This makes me feel tired and without caffeine I could sleep the day away.  Sometimes the crit gets down to 24 and I ask for a transfusion. But walking up hills, wow, it doesn’t take much before my heart is pounding! The noise of this is inflated at the moment because I’m getting over a sinus infection that has clogged both my ears--so annoying.  So the artery that pumps blood to the brain I can hear clearly.  I really can’t hear much of anything else though and then when I talk it feels so loud that people can’t hear me! When I eat cereal I feel everyone can hear me, so I nervously chew as slowly as I can. Turned out nobody could. For conversations, I can’t hear much unless I cup my ear, and ask people to repeat. It’s an interesting frustration that I share with many septo- and octogenarians. I have some deeper insight into how it feels now. One of the worst scenarios is when Alpen turns to me in the downstairs and with concern says “whats dat noise” and I don’t hear anything. It’s probably a neighbor using a saw or blower or mower, but I’m not gonna lie that for a split second I’m worried someone else is in the house. Then he turns to me and says, “Dada, what dat smell?,” well are you smelling cooking upstairs or do you smell a gas leak?--but then, does he even know what gas smells like?-- my mind races for a sec, then we move on.

I’m continuing to enjoy spring out here. The daily walk really lets me see the flowers of the neighborhood. I just installed the plantsnap app on the phone and so I’m learning some new plants as I walk around now!

For clinic, I only have to go once a  week at the moment and I’m back under the care of Dr. Cassiday having graduated from the transplant floor. The clinic now requires masks and sometimes take your temperature as you enter. For home life, grandparents are continuing to be awesome and help out during the days so Bree can kick ass at her job’s zoom calls, and I can rest, walk, or drive to the pharmacy/clinic, and slowly get back into Alpencare. Yep, I’m driving now, so that’s some more freedom.  Heard some good news at the exit summary from transplant. Best of all, still in remission. Then my cyclosporine taper should be done in mid-june. I thought it would be much later.  Then my hickman can come out once my hematocrit stabilizes and I’m no longer needing too many infusions. Once the hickman is out, I can hit the hot tubs and hot springs around the region. And more realistic on a daily level, take easier and quicker showers. Thanks for all the support to get to day 100, hoping for another good 100 days, and then more!

Day 100 cheers!

Common Camas blooming in the pollinator garden!

Alpie always finding new ways to eat

Lovell family: Byrne, Peggy, Alpie, and Briana

Oma and Alpie having a tea party on the deck steps

The fam enjoying a crisp spring morning coffee outing in CC