Thursday, March 28, 2019

'Platelet pandemonium' a distant memory

Health Union illustration of me being unhappy about my hands
Yesterday I was a little grossed out and grumpy about spraying my ficus plant with dish soap to get rid of tiny little pests that might be mealy bugs. Of course I didn't protect the floor, so then I got down on my hands and knees to wipe up the mess. A little tree by now, it is like the Leaning Tower of Pisa. I keep trying to stake it up, with limited success. We've been together a long time. I don't want to give it up, so I just live with it. There must be something in here about living with imperfections.

You can't do this all the time, but it occurred to me, for the sake of perspective, to look at what I was doing 10 years ago. I knew I was still in the hospital, but I couldn't remember what was going on. When I looked it up, I saw that my platelets were so dangerously low that I never would have gotten down on my hands and knees. So being able to do it is a good thing, I guess.

In a post headlined Platelet Pandemonium I wrote,

"Yesterday it turns out that I had dropped to 4 platelets, as in 4,000, and the PA seemed to be kind of worked up about it. She said to be really careful and take it easy, i.e. don't fall. In the meantime she went to call the Red Cross for the platelets, which were nowhere to be found. They started a special search for me and I waited. The nurse had been wrong about platelets being available. I took a walk but basically held my breath all day, except for throwing up my whole lunch onto my tray (sorry...gross, I know). I don't think she was very happy with me. Shortly after that the nurse went home. I got one of the regular staff nurses and was happy about that."

Normal platelet count is 150,000 to 450,000 platelets per microliter of blood. So 4,000 is VERY low.

Certain things are a blur but others are in full detail. I clearly remember that nurse bolting out of there. It made me feel worse than I already felt.

It took a long time for my platelets to recover. I hover around the low edge of normal and am sometimes a little below, but I'm told that is fine. The sign of low platelets would be more than normal bruising or tiny little spots called petechiae, a sign of broken blood vessels. At times I had them all over the place. Now I only get black and blue marks when I hit my left calf with my tennis racquet when following through after a serve.

At last check, my platelets were 161, which is shorthand for 161,000. I may not be normal in other aspects, but I'm normal in platelets.

In other news, I wrote about the attachment we get to longterm caregivers (suicide alert) and about why I'm not happy about my hands.

Saturday, March 16, 2019

St. Pat's race: going the distance but not running the course

I’m still recovering from my finish at the Saint Patrick’s Day Road Race two years ago, so I didn’t try to run it today, though by the end of the day I felt like I had done it.

South Hadley friends and their friends 

With Ben after the race
In fact, between dog walking and a run at home, and then parking a good distance away and walking to the finish and pushing through crowds and milling around and trying to find Ben, and then finding him and his friends and wandering around some more and then walking back to the car, while juggling a beer, French fries and a hot dog with mustard and relish oozing off of it, I went further than if I had run.

It felt like a great accomplishment to find Ben and the rest of the group in front of Francie’s Tavern, as planned – yes, it could be accomplished without cell service – and be their official photographer. What a crew!  I went dressed as a runner, not as a spectator, so I was a little colder than I would have liked.  At home I had done my little run and then gone pretty soon after that to Holyoke. I didn’t change. Maybe I wanted to blend in…or maybe I was in a rush.

A while back I considered maybe trying it again, but I wasn’t running any further than three miles and wasn’t liking it enough to increase my distance. I still think I might want to try it because there wasn’t anything like it. I get a kick out of picking the older runners out of the pack because they’re proof it can be done. Maybe if I find the right balance of THC and CBD it will go to my feet but not to my head.

The race is always a thought-provoking day. If you’re just dropping in here, the reason is that it led to my leukemia diagnosis. My claim to fame used to be writing about it for the Lives page of the New York Times magazine, but that claim was eclipsed by my accomplishment of finishing last and writing about that and a comeback of sorts for Women’s Running Magazine.

Since I’m into this 10-year retrospective thing, I went back into my archives and found my post from around the same time  of year, March 18, 2009, when I had been in the hospital for three months and wasn’t walking normally yet. While I was scrolling through, I got stuck looking at some of the photos. I was really skinny.

Here's some of what I wrote:

“I can make it up and down the hallway with a walker and that is getting easier as I am losing more water weight, but I still I look longingly out my door at the people who are just walking without giving it a thought. It is interesting what we take for granted.  I am due to go to rehab after I leave here so I assume that walking will be second nature in the near future.”

A little perspective goes a long way.
It was a super fun day.

Tuesday, March 5, 2019

Neurologist: OK to try pot for neuropathy

I've been so busy trying out my medical marijuana that I forgot to post. 

A couple of times I took a little too much and was not happy about it. The solution seems to be finding the right combination of CBD and THC and then doing mini doses.

Actually I keep starting to write and then going on to some other thing, so, before I drift away again, here's the scoop. The neurologist in Boston is all for experimenting with pot, and he left it up to me to decide how much to use and whether it gives me enough benefit to be able to cut back on the gabapentin. In Livestrong, several of the women who are taking it for pain were not surprised. One said that with no research to draw on, doctors want patients to tell them what works. 

Dr. David Matthew Pilgrim backed that up. He said that patients say it works, so he is all for it. He said that my dosage of gabapentin, 1500 mgs. a day, is in the medium range and if the pot doesn't work, I can increase it. It would be a lot easier to manage if it were as simple as saying "take two aspirin and call me in the morning." Nobody seems totally certain what to do about it.

In any case, the visit with Dr. Pilgrim was reassuring. 

He has a big title: Chief, Clinical Neurology, Brigham and Women's Faulkner Hospital
Instructor, Harvard Medical School, yet I never saw a doctor so friendly, warm, open and down-to-earth. It was the first time a doctor ever came out to the waiting room to get me. We had a lot in common, both native New Yorkers, and he went to high school a block from my alma mater, Friends Seminary. He grew up in Crown Heights, where Katie lives, and he went to Amherst College. We talked for so long that I don't know how he gets all his patients in. Judging from his reviews, he gives the same care and attention to everyone. I left with a smile after having such a pleasant visit. 

He grew up in the 60s, and I wonder if his acceptance of marijuana is due to his age. I know that Dr. Alyea, who is younger and from a different part of the country, is not a fan. 

It was a little odd to read the note about me that came through on Patient Gateway:

This 64-year-old right-handed woman with a history of AML, bone marrow transplant, graft-versus-host disease and treatment with chemotherapy has had 10 years of fluctuating numb and tingling feet.  They sometimes feel like she is walking on eggshells or that an electric current is present.

Appropriately dressed and well groomed. No pedal edema.  She has a skin rash consistent with graft-versus-host disease.  MS Awake, alert, attentive. Oriented X 3. Normal language and memory.

This patient has a generalized neuropathy likely related to chemotherapy and possibly graft-versus-host disease.  Her symptoms are well managed with gabapentin and medical marijuana.  I recommend that she continue to experiment with the medical marijuana and if the symptoms improve, she can lower the gabapentin dose in 300 mg increments as tolerated.

If the symptoms worsen, we should increase the gabapentin dose.  I explained that the gabapentin dose can be pushed as high as 900 mg 4 times daily.

In my opinion it is not exactly well-managed, or else I wouldn't still be looking for more help. Having an electric current running through your feet is not the best way to get through your day. I imagine he has seen people who have it worse, and I know of some who do.

I told him that it bothers me less when I play tennis; I assume that moving around helps the circulation, moving faster helps my balance, and concentrating on the ball keeps my mind off my feet. I told him that sometimes people say I walk funny, which I don't appreciate, because I didn't ask. He had me walk, then jog, down the hall, and he confirmed that when I move faster, my gait is closer to normal.

The other part of his prescription is to play more tennis. I said I would love to do it but I can't afford to play much more. In the summer I don't have to pay for court time but then I run into the problem of getting too much sun.

Speaking of summer, here's something I wrote about Tom Brady's misconceived ideas about sun protection: Penalty on Tom Brady for Sun Protection advice.