Coming soon: Steroid injections in my cuticles

If you know me at all, you know I like to do things differently. There were the three Caesareans and the four stem cell transplants, the coma followed by the "your mom might not make it through the night" event, the three-plus months in the hospital, incidental discovery of kidney lesion, and the graft vs. host disease of the skin, requiring a couple of years of my blood getting taken out, zapped with radiation and put back in, a.k.a. extracorporeal photopheresis for graft vs. host of the skin, or ECP, the fall on my head when I was running around the lake and the fall on my head two weeks later when I fell off my bike...

Well, those are just some of the things...

The ECP wasn't that unusual though unusual to me when I first heard that I needed it to fix parts of my skin that were hardening and getting lumpy and bumpy. I had weaned to every three weeks after starting by doing it every two weeks at the Kraft Family Blood Donor Center at Dana-Farber/Brigham and Women's. Maybe I did it for two years. I have to admit I lost track. I was going to keep cutting back but had to stop abruptly when the pandemic started. My skin stayed OK though, even though I went off prednisone after being on it for 12 years, as I described in this post. 

I was on such a small amount, 1 milligram, that going off it does not seem to be a cause of a new crazy thing: MY FINGERNAILS ARE FALLING OFF!

Just had to put that in caps...

OK, so, it's just one fingernail that fell off. OK, so I helped it off. It turned white, a sign, my fingernail specialist dermatologist said, that the nail had died. It was loose like a baby tooth, and I wiggled it off. Katie gave me a princess bandage so I could cover it up.

Half of my fingernails are OK, But the others are discolored and ridged. 

A fingernail biopsy showed that I have GVHD of the fingernail, or more precisely, fingernails. Yes that is a thing. 

At the end of this month, I have an appointment in Worcester with a dermatologist who specializes in diseases of the nail. She is going to give me steroid injections in my cuticles. On the bright side, she is lovely, as I explained here. 

Enough of that for now at least.

I am not sure if I mentioned that I got the fourth shot that immune compromised people could get.  That became my booster, and the first three became me original series, or something like that. Same as when I got my 1st booster a little early, I didn't have to do anything other than answer yes, when I signed up, to the question of was immunocompromised. Moving off the health topics...

It has been nice to have some people over for coffee with the COVID situation easing. 

One of the friends brought me cheerful flowers that have been cheering me up.

2nd seder on Zoom and a sort of 10K

 

I ran a 10K!

No I didn't, but I looked at my mileage and it was 6.2 miles with a combination of dog walking, walking with a friend, and a few miles of jogging. 

I was so excited after the second dose of the vaccine that I went for a run. I felt better the first couple of days after and then on the third felt a little off...Just that feeling that you are fighting the flu. Hopefully it's a good sign.

The other day I went jogging before the rain and ended up being passed by a young guy who was really kicking up his heels. He sped by me. Harumph, I thought. Then I thought, wait, he's a small fraction of my age and most likely hasn't had four stem cell transplants.  And then also I don't think I ever had such good form. 

Once I got home, the good old negative self-talk kicked in again. I know that a loop that I like, up the Park Street hill with the Mount Holyoke lake on the left and back down on Morgan Street and going a little past my house on the way back, is about three miles. I got back and checked my phone (no Apple watch for me) and saw 2.9 miles. WHAT? I thought it was three...Well I walked around the house for a minute and then it was three. 

This is now and that was then...three miles isn't that bad and also better on my knee.

Nell at the Zoom seder

Last year, after our Zoom seder, we wondered if the next year Passover would be in person. 

Well, it wasn't. Thanks to Diane and David, though, we saw a lot of people, since their second Zoom seder had some 50 participants. The benefit is that you can have people in different time zones in the same place. The downside is that you can feel forlorn when "the meal is served" and everyone has disappeared. Last year, we got it together to all make dinner and eat together in our family Google Meet. This year for some reason none of us did. I got a chicken but didn't make it until later in the week. Boyfriend and I had leftovers by candlelight, and while he was heating things up I talked to Katie via FaceTime, since she shared my forlorn-ness. 

Six of us with expertise in illness and recovery read a little something about what we had learned. I don't know why I was nervous about doing it; it was all friends and family. I get nervous though in even this little bit of public speaking. I could have declined when David asked me to do it, but I figured that if I could face leukemia multiple times, I could do a little reading. 

Here's how I began it, with apologies to Joe and Diane:

I know a thing or two about how to not get out of a lockdown gracefully. For example, you don’t overestimate what you can do and you don’t get so flush with freedom that you go running and neglect to look where you’re going and trip over a root and crack your head. Then two weeks later you don’t forget that you are a little weak and get on a bike and fall off and crack your head again and get another concussion and stitches in the same eye that is still black and blue from the last time. 

It’s hard to avoid the temptation to rush back to normalcy but my most successful results came from being more deliberate and focused. 

But I have to say that now that I am two weeks post my second vaccine, I want to plan more than one thing. I haven't done it yet. I got a ride in a friend's car, and that was the most exciting thing so far. It's going to take time to inch back into normal life. 

2nd shot in the arm and something growing on my nose

Wintry day at Ashley Reservoir

I got my second shot today, yay! And on the same day, I found out that our beloved Shakespeare in the Park is going to happen again this summer. So, things are definitely looking up.

I have a new doctor whom I have only met once. Here is something I wrote about getting a new doctor. These changes make me think of my sweet friend Kelly and how devastated she was when her therapist left the area. Of course there was so much more to what caused her to take her life. But it is the last thing I remember her talking about. Sorry there is no transition to this next thing...

Medically, I mostly live in dermatology now. There is something on my nose, and it is making me cross-eyed. And no I did not tell a lie. 

It goes like this. Dermatologist #1 biopsied it and said it was another squamous cell cancer and sent me to Mohs surgery. There, dermatologist #2 said it was not bad enough to do surgery on and said to apply the chemo cream combination. It almost went away, but not all the way. Dermatologist #3 said it should have been removed, because it is growing, and said I should go back to Mohs. YES I have that many dermatologists. Don't ask. Maybe some other time. 

I sent a photo to dermatologist #2 at the Mohs surgery center. The person who took my info said she would get back to me. She got back to me and said to come in on April 21st. I said THE THING IS GROWING on my nose. She excused herself for a moment (I'm thinking of a car salesman coming back with a better deal) and said to come in on March 31st. She said the doctor probably wouldn't do Mohs but would get it off of my nose somehow. (Presumably a better way than having me pick it off.)

Dermatologist #3, who is really my first and number one dermatologist, said that was OK.

But I nicked it with a washcloth and now it is a little bit detached. I thought of calling to see if they have any cancellations before that, or, alternately, asking dermatologist #1, who biopsied it and who is easier to get an appointment with, if she could see me before.

They are all in Boston. Last night I dreamt that I called the Mohs office early in the morning and was surprised to hear the doctor herself answer the phone. She sounded sleepy. I said I was sorry. She didn't seem to mind. She gave me the phone number of a different doctor to call. I said I didn't recognize the number and asked if it was local. She didn't tell me. I couldn't read it that well. I tried to dial and had trouble with the phone. At first it was a rotary phone. Then it was a cell phone that I couldn't operate. 

The old "can't dial the number frustration dream."

Well in any case, as I said, I still think things are looking up.

We took a nice walk around Ashley Reservoir. It was good to get out of the neighborhood, even if only to the next town over. I didn't even have much PTSD about the time I got lost when running my last Turkey Trot. 

In a couple of more weeks, I should be good to go somewhere else. Maybe even into Ben and Meg's house to have real hugs with those cute little grandkids. 

Shot time

Earlier this week I got my vaccinations. You do this one year post-transplant. I did it after my first transplant in 2003, and this is the first time since then that I've made it to a year.

So hurray for vaccines, two in each arm! It didn't really hurt, but the two in my left arm went into the muscle, so it hurt more and was sore for a few days. It felt kind of upside-down; it seems like only yesterday that I took my babies to be vaccinated. The hand-outs I got this week were the same as they give at the pediatrician, explaining "what you need to know" about the shots.

I got the shots for:

– Haemophilus B, or Hib vaccine, to prevent Hib, a serious disease caused by bacteria and possibly leading to pneumonia, swelling of the throat, infections of the blood, joints, bones, covering of the heart and also even death;

– Diptheria, tetanus and pertussis (whopping cough);

– Pneumococcal disease, a bacterial infection that can cause blood infections, pneumonia, and bacterial meningitis, an infection of the covering of the brain; and

– Meningococcal disease, another bacterial illness that can cause bacterial meningitis and blood infections.

As for the rest of the visit, my counts were a little lower but OK for me. I got an appointment for two weeks, then headed back out into the world, a brave baby who had not shed a tear through all the shots and blood tests.

It's a little stretch to compare the shots to some other things, but it feels like there is a connection.

In jogging, I have to go back to "beginner's mind" (kind of like baby mind) to make progress. This means starting with run/walks, instead of struggling to reach advanced goals.

In yoga, I had to back up a little to see a way towards progress, sort of like going back to childhood to get my shots. The week before, yoga was terrible. It was too hard, and I fought it all the way. First of all, I looked at people doing what I could do effortlessly before my last hospitalization, and it made me angry. I kept toppling over, and Erin brought me a chair to lean on. That made it so much easier, because I didn't have to worry about falling.

This week I pulled the chair over and had it ready to use before that difficult balancing part came. So I didn't have to deal with anxiety. I did better the whole class and especially the part where I used the chair.

Erin came over after and said I did well. "See, you need to accept help," she said.

If I need to be more childlike, or, rather, feel more childlike to get the necessary help, whether it's shots or yoga or running or tennis, then I need to stop struggling and just do it.