Look Ma, two hands. (Well, actually arms).

Two arms are better than one at ECP at Dana-Farber

The new machines for extracorporeal photopheresis, or ECP, at the Kraft Family Blood Donor Center at Dana-Farber are faster than the ones used when I started getting my blood sunburned two years ago.

They are even faster, by almost an hour, if you use two arms instead of one. That's a substantial decrease in what is normally a three-hour procedure.

The nurses have broached the topic of going to two arms but I always chickened out, worried about the pain  or the loss of one free arm to use the computer or try to read a book. Yesterday, though, my nurse, Marc, sweet-talked me into it so fast that before I knew it, I had a needle in both arms. He said we could just try it and if I didn't like it we could always go back to one.

He said everyone uses two arms.

"Larry, do you use two arms?" I asked my fellow ECP-er sitting in the chair diagonally across from me. Turns out he only uses one, but Marc wasn't deterred. With a big smile and joking about not trusting the nurse taking care of the patient on my left, he got the first needle in on the left arm so smoothly I hardly felt it. While I was complimenting him, he put another needle in my right arm. And I had two arms connected before I knew it. I had taken an oxycodone right before I came in, so that probably helped. It also, as per usual, made me more chatty.

"Marry me," I said to Marc.

He had said he would fix it so that I could use one arm, but that didn't really happen. The time went by quickly anyway, what with chatting with the nurses and talking to the two fellows who stopped by.

I had had a good ride in, following another good one two weeks before.

My only issue with Angel from Serene Transportation on Wednesday was that when I asked him to turn the radio down, he did it such a smidgen that I hardly noticed. (Like maybe a kid would have done.) It was hard to hear when I had to make a call. Then he took the sound out of the back speaker and said he realized the problem was with the speaker nearest him not working. So maybe while I thought he was messing with me, he was just trying to hear the radio on his end.

I brought him a couple of snacks for the way home. He said it had been a long day of driving.His rear end was killing him. My arms were hurting so I know how he felt. I thought of taking another oxy but instead took the edge off with Tylenol and a bowl of chocolate and vanilla ice cream.

The previous week, I had the Russian driver Sergei from the bad trip that caused me to miss my appointment. It wasn't his fault – the scheduler had screwed me by putting in another patient who lived way out of the way – and I could tell how bad he felt.

Two weeks later I was coming down the sidewalk after a quick walk when I noticed a car in my driveway. It was 15 minutes before my scheduled pick-up time. But it was Sergei, who said he didn't want anything to go wrong this time. Nothing went wrong. What a relief! (Amazing how something as outwardly easy as a ride to Boston could seem so fraught with peril.)

Today I played my first Friday morning round robin of the year at the Enfield Tennis Club. You do three rounds with different partners, keeping your own score, for about 45 minutes each round. At the end, they add up points. The one with the highest number gets the prize: a can of tennis balls.

I won 5-3 with one partner, 5-3 with the next, and then tied 4-4 when we ran out of time. It was relaxing fun tennis with talk in between games about things such as the first mice in someone's basement (a mouse now in mouse heaven).

My slice light was on. (Thank you George.) I got a lot of balls at the net, playing with two different people who set me up nicely. I told my first partner, a longtime tennis friend, that if this was hockey, the announcer would credit her with the assist after I got a good angle at the net. (Channeling my father.) Using my poor imitation of Joe's announcer voice, I demonstrated what that would sound like.

At one point I thought I might get the can of balls, but it was not to be.

Afterwards, I thought about how at one time, I wasn't strong or steady enough to play in the Friday round robin. It is more competitive than on Wednesday, and I heard back then that only one person wanted to play with me. If this resembles playground talk, it's because at any level, people want to be on the winning team. This was hurtful but I saw their point. (Thank you my friend with whom I won at The Districts while playing with pneumonia for being such a good cheerleader. That part of my Lives essay is near the end.)

Obviously I don't really care about the balls. I'm just happy to feel good out there.

On way to Dana-Farber, joy of low expectations

Little bit of color: my mom's painting on left, my flowers, and Matisse print

When a friend asked how my ride was yesterday and I said that the driver was pleasant and actually looked me in the eye and said hello and asked how I was, she said, "Nothing like setting a low bar."

Indeed.

It almost turned into one of those days. I didn't get the confirmation call the night before, so yesterday I called MART, which arranges the rides, and stayed on what I thought might be an interminable hold but which was short for them – about 20 minutes. The call-taker said I had a ride for three weeks from yesterday but not for yesterday. I was sure I booked that ride. I told her the woman who booked it sounded confused, because she asked me several times. Luckily it was only 9:15 a.m. or so and the person who took my second call said she could find me a same-day ride, but I had to answer my phone or they wouldn't take me.

So I went off to tennis and kept my phone in my pocket and sure enough I got the call. It came in the middle of a point but I had already said I might have to stop, so that worked out and we picked up where we were.

The ride came on time. And the driver even called ahead to say he would be a few minutes late but that he was on his way. A minor miracle!

When we got to Boston, I asked him if he liked sports, and when he said he did, I offered to leave my New York Times sports section, and all the rest if he wanted it, while he waited for me. He thanked me and said he also had homework to do: studying for the handcuff training that is part of becoming an auxiliary police officer.

Once at the Kraft Family Blood Donor Center for the light treatment on my blood (my current shorthand for ECP) my good fortune continued. New machines make the procedure faster, only by a little, but that shorter time makes a difference. My nurse yesterday, Tina, has become a friend.

We are on the same page about the election, as was the nurse working next to us. I had introduced Tina to fivethirtyeight.com and so we talked about the trends and forecasts and the various forecasting methods that The Upshot and other sites use. (Explanations courtesy of Ben Doody.) Looking at the electoral map, we looked at the big swaths of red in the middle of the country and asked how can they.

I found some stories that I had read and sent her the links and read her some analysis of the VP debate. For her part she was still cracking up about Alec Baldwin's Donald Trump on this past Saturday Night Live's Cold Open. I went back and found Darrell Hammond's, which I said I liked better because it was a little more subtle. I also found some of the SNL primary debates, which I watched and the nurses peeked at in between doing other things.

Thus the three hours passed, with us looking at funny videos and serious stories. I don't eat much when I'm there (they have a lot but I took my time eating one bag of Cheez-its) so I took a handful of snacks and shared them with my nice driver. I dozed off a little and was home before I knew it, not annoyed at anything.

Stranded... in my own house

I couldn't complain about the person driving me to Boston for my appointment yesterday because I never saw him. I waited in my usual spot looking out the window at my driveway and checked my phone to see if I had missed a call.

I called the company, Sonic Velocity (one of the good ones) but it went straight to voicemail. I called MART, which arranges these in-state rides for patients, and got put on hold while the call taker checked. She said the driver had left because he didn't see me. I said I never saw him. She said he was waiting at the foot of the driveway. I said we've been through this before. The first time this happened more than a year ago when a driver left without me I said it's a state highway and the door is on the driveway side. I said this company has been taking me for more than a year and they know that. She said it is a curb-to-curb pickup and they don't have to call me. It is only a courtesy and if I want it I have to request it. I said I did request it. She said there was nothing she could do but put me on standby, in which case I would need to wait an hour.

What would you like me to do, she asked. I started crying. If you can label a type of cry, I guess it was a combination anger and frustration. I hung up on her. I missed my appointment. Still crying, I called the Kraft Family Blood Donor Center. Diane, who books the ECP -- or photopheresis -- appointments, was very nice. I rebooked for today. I am going to drive myself.

So, OK, it's not life or death. I can do it today. I had arranged things so I could do it yesterday as planned and then had to rearrange them. But what if someone REALLY needed to go to an appointment the same day? They would be screwed.

I'm stoic (for the most part ) about the big things, but the annoyances like this get me all worked up.

People have asked why I don't just drive myself. Because it's a lot to do in one day, and you lose a little blood in the process, and I get tired. Depending on how I feel afterwards, I'm going to either sleep at Margaret's or come home. I have things to do tonight and tomorrow so I would rather come home.

I put a half humorous post on Facebook saying what had happened and asking if anyone wants to drive me to Boston and hang around for three hours while I get my blood sunburned.

My childhood friend from Atlantic Beach, Mike Kass, was the only one who responded. A new social worker said she didn't understand why I was hesitant to ask people for rides. I said because people are busy and it takes up a whole day and they have other things to to. I think it is probably like this for anyone who has been seriously ill: You are lucky to have friends to help you in the serious stage, and you have to understand that they are less likely to do it in the maintenance stage.

I think Mike would have driven me. But it's a long way from California.

Coming in for a landing

Blowing in the wind, Wellfleet

Dissonance: One day running around New York and seeing two shows, another on the beach with my hair blowing in the wind, and then back in the chair with a needle in my arm.

This all happened in a short period of time. The Cape Cod mini vacation ended Wednesday morning, when Katie and I drove to Logan Airport for her flight back to Minneapolis and I went straight to Dana-Farber for the light therapy treating my graft vs. host disease of the skin. But it was wonderful and restorative so I can't complain. Well, maybe a little because it was so short and when the planning and the thing itself is over, the inevitable letdown occurs. Think, First World Problem-itis.

I got to Dana-Farber early enough to go up to my old hang-out, 6A, one of the bone marrow transplant units at Brigham and Women's Hospital. Two of my favorite nurses were there. We gave each other big hugs. One got tears in her eyes when I showed her the photos of me and Nell. The aide who bathed me when I could barely move came over and talked to me about how sick I was. My tough-love nurse, Myra, wasn't there, and I said to send her my regards. We talked about how she had made me sit in my chair when all I wanted to do was get back to bed, and she had said, "You'll sit up and eat your lunch like a normal person." We talked about how when I relapsed the second time, I went straight to the sixth floor and asked Myra how I could go through it again, and she said, "You can have your pity party for an hour and then you'll put your boxing gloves on."

Race Point sunset

I also dropped in on a patient who had just had her bone marrow transplant. I am happy to be getting more patients to talk to through the One-to-One program in which patients who've been there talk to those going through it.

I'm more useful for people who are having a hard time or who have relapsed, and I guess that's not what patients were looking for. But recently I got three.

 If they ask directly for my story, I tell it to them, but if they don't, I gloss it over by saying a lot of stuff happened to me including relapse but Dana-Farber figured it out. I don't like to get into too many specifics because I understand the tendency for someone to think it might happen to them. On the positive side, of course, I'm alive and well so that is what I focus on.

I gave two tips to the patient the other day: During your year of dietary prohibitions, you can still eat fruit by cooking it up with lemon and cinnamon; technically called fruit compote but named fruit mush by my mother and me. I also told her that if she wanted eyebrows, she could order stencils on line.

I was pretty tired by the time I got to the Kraft Family Blood Donor Center, and I fell asleep almost as soon as the needle went in. A problem with going on vacation with my kids is that I always want to do one more thing on the day that we're leaving, while they consider it packing up day only.
So I got up super early Wednesday and did my one more thing, going to the Flying Fish for coffee and a muffin and then walking over Uncle Tim's Bridge and looking at the water.

When I woke up from my nap, on Wednesday, my nurse told me I was almost done. It was only 5 p.m. and not the usual 6:30, so I asked if she had done five cycles instead of the usual six. No, she said, it was the faster new machine. Some people are doing it even faster by getting a needle in each arm, but I couldn't tolerate it because my veins have been used so much that I need to alternate and rest one arm.

I didn't have to deal with any crazy drivers because the crazy driver was me. I didn't want to do any more driving in the same day so I stayed over at Margaret and Nick's for a nice dinner and got a fresh start the next day.

Another skin cancer, another crazy driver

My squamous cell radar regarding my skin, like my parking radar in New York, continues to be accurate.

Before I went to Faulkner Hospital on Monday for the Mohs consult about the spot on my right jawbone, Ellen, the physician's assistant at the Kraft Family Blood Donor Center, said she didn't like a raised flaky spot on my cheek. I had noticed a spot at the top of my nose, right where you might put your pointer finger if you were deep in thought, and felt that the flakiness there might signal a problem.

These are not the kind of signs usually associated with skin cancer. But upon looking into it, I saw that the Mayo clinic described the signs of a squamous cell cancer this way: "a flat lesion with a scaly, crusted surface." The signs of basal cell cancer and melanoma are different.

So when I had my appointment I pointed out the two new spots. The dermatologist wasn't worried about Ellen's spot, which will be taken care of by my upcoming face fry, or photodynamic therapy, but she did biopsy "my" spot. When I got the biopsy report during the week, I learned it was what I suspected. Luckily these have all been in situ – on the skin. I got a message saying that I could either apply the chemotherapy cream I already have or wait to get it frozen when I return for the Mohs. I am applying the cream.

Do you remember Kenny?

The driver who stopped late at night so the other passenger could get her diabetes medicine? Do you remember the kerfuffle that ensued? Well, wouldn't you know it, another problem occurred on my way home, exacerbated by the pain in the biopsied spot as the numbing medicine wore off. When his dispatcher called to tell him to pick up a patient in Worcester and bring her home to Springfield, I heard him say that his passenger (me) wouldn't like it and he was going to have to listen to me yelling all the way home.

I said I wasn't going to yell but since the last time we had driven all the way to East Springfield AND stopped for the medicine would he get off at Exit 7 and take me home first because I was in pain. He said why would he do that because he lives in Chicopee and it was more convenient for him to go to Springfield first and then to South Hadley.

Oh and did I mention that previously he had been talking on his (hand held) phone and telling a friend that he was annoyed that he had to lock his gun in his glove compartment?

He said he was the driver and the order of dropping off was up to him and I had to EARN the right to say when I wanted to get dropped off and so on and so forth in a continuing rant.

You are probably thinking don't get into it with these drivers, but he was taunting me and I got hysterical like the last time I was in the car with him. We took our detour through Worcester. The woman who he picked up at a hospital got in the front seat. When she heard me sniffling, she asked, "You all right, honey"?

Apparently she had had her own problems with MART after waiting for hours and hours to get picked up. When I told her that I really needed to get home, she said she had been waiting so long that she didn't care if she waited a little longer so he should go ahead and drop me off first.

Kenny turned around and said, "See"?

See what?

I got over myself after she started telling me about her own problems. Her hospital visit didn't sound serious – aspiration of what sounded like a non-cancerous cyst – but her health history was.

 She said she was a recovered crack cocaine addict and alcoholic. She said Worcester was a drug haven and she had to get out of there but she still went back for medical care.

It dawned on me that she was the same woman who had demanded we stop for her medicine. I hadn't seen her that well in the dark, but the pieces began to add up. She must have been having a really bad night because on Monday she was a different person.

She said she had neuropathy in her feet (due to diabetes). I said I had it from chemo. We found that we both take gabapentin and that nothing totally makes the pins and needles go away. Hers sounds worse. We showed each other photos of our children. Then, it being the day before Super Tuesday, she brought up the election.

"I'm going to vote for my Hillary," she said. All of her people in Georgia were going to also.

She said that while George Bush was flying over New Orleans after Hurricane Katrina, Bill and Hillary were there taking care of the babies. She doesn't like Hillary as much as she liked Bill, but, she said, "He has her back."

You can find solidarity in the most unlikely places.

People ask why I continue to take these rides. The answer is that some of drivers are fine, and the cost/benefit ratio still weighs in favor of the benefit of not having to do the driving myself.

I am going to call the company and say I will not get in a car again with Kenny.

And I'm going to drive myself the next two times anyway since I have a double-header on both ECP weeks.

This week I'm staying at Margaret's on Wednesday because I have my regular check-up with Dr. Alyea on Thursday. Next week I'll stay at Diane's Tuesday night because I have the Mohs that day and ECP the next day.

I'm lucky to have my sister and my sister/friend so close to Dana-Farber!

Adding and subtracting

Only at a dinner party where you've known the guests for a long time could you hold up your plate and exclaim, "I'm eating spinach salad!"

This happened last week when I ate spinach for the first time in six years. Not that I was craving spinach. I had to eliminate as many other iron rich foods as possible because of the ferritin overload that was sitting on my liver due all those blood transfusions I had.

I knew all the bad consequences of  high ferritin, which I believe was 7,000 or more (micrograms per liter), compared to a normal level of 11-307. I chipped away at this by getting therapeutic phlebotomies (having a pint of blood removed every couple of months) and dissolving five nauseating Exjade tablets in water most mornings, downing, and waiting half an hour to eat. The tablets bind to iron and remove it from the bloodstream. I took periodic breaks because it was so hard on my stomach. It was a big day a few months ago when I learned that I was "normal" and did not need to renew my prescription.

So, bring on the spinach!

Now, for the subtracting.

I have decreased from three Budesonide tablets a day to two because the glucosteroid has gotten my collagenous colitis under control. In a month, I will check back in with my GI doctor in a month and hopefully continue to taper.

Any day I take fewer pills is a good day.

Finally, I am now going only every other Wednesday to Boston for ECP, or extracorporeal photopheresis, the light treatment that has worked wonders on my skin...and improved my overall movement and tennis game. This is my week off.

I never thought I would say this when I learned in May that I had to do this, but in a (small) way I will miss it. Not the transportation or the big needle in my arm for three hours, but the cheerful, funny nurses and the friendly, always smiling, physician's assistant and doctor.

My nurse practitioner, Melissa, had told me that she sometimes goes over to the Kraft Family Blood Donor for a feel-good visit, and while at first I didn't understand why, now I totally get it.

When complaining gets you nowhere

I might finally have to say goodbye to MART, the transportation authority that gives free rides to patients. In exchange for some good stories (another to come) and saving on gas, mileage and parking and fatigue in driving, I am not sure if it's worth it anymore, especially since I am now going every other Wednesday to get ECP, or extracorporeal photopheresis, the light treatment that has greatly improved the graft-vs-host disease that caused my skin to to thicken and harden.

If you are tired of hearing about this, you can STOP HERE.

If you want to hear about how I waited 45 minutes last night at Dana-Farber for the company to send a new driver from Springfield because the one who had taken me and who was supposed to pick me up disappeared, and how my new driver told me that he had five children with four different women and that he was a father at 14 because his then 19-year-old babysitter got pregnant after having sex with him since he was 8, and about how I called MART to complain for the third time and asked if that was enough to get a new service, and how the person said no, you have to complain several times, and how I said several is three, and how I called my efficient Turkish driver friend to see if I could get him back and how he said Westfield Transport is offering a lower bid, then you should continue.

If I get that company again I'll either drive myself and stay overnight at Margaret's or Diane's, or get a ride if someone wants to drive me and sit around or go someplace for the three hours. Actually it's fun at the Kraft Family Blood Donor Center. The nurses are nice and friendly, and there is a camaraderie among the patients (when they are not sleeping) and the people who sit with them. When I left yesterday, I was a little sad to be skipping a week. It shows how perceptions can change because when I first heard I had to do this, I was not happy about it.

Since I have the number for Westfield Transport, I might also call directly and tell the owner not to bother bidding for me because I'm not going to go if I get them again.

My driver taking me to Boston yesterday was half an hour late. Someone asked why I don't drive myself if they are late. Firstly, I think they're about to come. Secondly, my car was in the shop getting new brakes.

When he finally came, he said his boss had told him to pick someone up in Northampton at 12:30 and take that person to the doctor, and when he told his boss that he would never be able to get me at 12:45, his boss said he didn't care. He also told me that the owner wanted him to drop me off in Boston and take someone back to Palmer and then come back to get me, and that when he told the owner that he would then be late for me, the owner said too bad.

I told him he better get me at 6:45. None of the drivers who take me have the time to do another run; they hang around in Boston until I am done. There was no sign of him at the appointed time. I called and he didn't answer. I called the owner, who impatiently told me that he would look for the driver. About 7:30, a different driver called and said he was stuck in traffic on Memorial Drive. When he picked me up he said the first driver had gotten a flat tire. I don't know how he got a flat tire when he was supposed to be waiting for me.

My new driver had been in the car all day. He had started at 4 a.m. and was just beginning to call it a day when he got called to come get me. He was pleasant, albeit telling me more than I needed to know about what his babysitter did with him. He asked if we could stop at a rest stop, and I said sure, why not. At this point I needed to decide if I was going to just eat the Cheez-its I had brought from the donor center or get something to eat. I knew that by the time I got home it would be too late to make anything. I thought I would get a slice of pizza, but that place was closed, so I got a cheeseburger at McDonald's. The less said about that, the better.

When we got to my house around 9:30, my driver was upset that I hadn't left a light on. Some people might think I should have left a light on, but I said I didn't want to use electricity all day when I wasn't there. Looking at the woodsy area around my house, he said, "A bear might get you." He waited to make sure I got in OK.

A touch of kindness in a crazy day.

Still, I had a bad headache, and after doing a couple of things, I went up to bed.

When I cried two times in one day

I hadn't planned to start my every-other-week ECP schedule yesterday, but it happened that way when the driver from Westfield Transport failed to show up. Worse still, when I called to find out why the driver was late, the owner lied to me and said he would be there in 10 minutes, and when 15 minutes passed and the driver called me, he told me a sob story about how the owner had overbooked him and he was in Springfield needing to get gas and furthermore if he took me there was no way he would be able to bring me back at 6:45 p.m. because he would be in another part of the state.

I called the Kraft Family Blood Donor Center to cancel and called MART, the place that arranges these rides, to complain. They were totally out of line: The driver or owner was supposed to give MART at least 15 minutes notice if they were unable to make a pick up. I haven't complained about this in a while because my Turkish friend and his fleet, Sonic Velocity, had been doing a great job. I asked if I could get him back again, but you can't request a driver due to the bidding system that I don't quite get. I have his number and I think I will call him to see what he can do.

Now, it just so happens that I am on a maintenance procedure and it was OK for me to skip. Although I was frustrated and annoyed, I could handle it. But as I said before, this is a prescription transport system for people who need to get to doctors' appointments for vital treatments, and I am sorry for the really sick people who not only get stood up but also have to listen to a driver make excuses.

Tears of frustration briefly filled my eyes, but I got over it and went about my business.

Earlier in the morning, something else happened that brought tears to my eyes. I was having a great time at the round robin in Enfield when my opponent, a guy, hit a ball hard into my thigh. It stung so much that I had to stop and walk it off. We were almost done with that round. I didn't finish. I said, "There's no crying in tennis," but the teary thing lasted until I got on the court with another group.

He apologized and said he hadn't meant to do it. Of course he didn't, but guys should not hit the ball so hard when playing in this kind of event. Some of the other ladies at a lovely tea afterwards also brought this up, saying it is no fun to play with or against a guy who just hits to ace you and place winners.

Most of the men we play with know better. They can do other things, such as practice spin and placement. One of our regulars even asks us what speed we would like on his serve.

But to end on a better note, I just have to say, I love my tennis friends.

(Not) just another day at the Kraft Family Blood Donor Center

Yesterday, there was nothing wrong with my driver, but a few things were wrong, or at least odd, with my day.

I called ahead to the Kraft Family Blood Donor Center like I am supposed to do to say I was on my way in for my 3 p.m. ECP. The front desk person who took the call said she would let the nurses know. But when I got there it turns out she hadn't, meaning I had to wait about 20 minutes for the machine to be primed.

Then, my nurse had a hard time getting the needle into a vein where it would draw. When she finally had it in and was waiting for the machine to start, she realized it was taking a long time. She called in another nurse who said one of the tubes was not connected properly and was drawing air. They had to take out a new kit and start again. In the meantime the needle in my vein started hurting a lot. She flushed it, and it hurt even more. Turns out it had infiltrated. She had to switch to my right arm. The machine beeped repeatedly, signaling that my blood was not being pulled out. After some injections of heparin to thin out what was probably clotty blood, it finally started working.

While we were waiting for the machine to start, we talked about the Paris attacks. (How can you not?) My nurse reminded me that back a month or so ago when we were talking about the refugee crisis, and she had said she didn't want any Syrians to come to this country because terrorists would be sneaking onto Massachusetts Avenue, I had said these were just poor people in need of a haven.

She said, "I told you this would happen," referring to the speculation that one of the attackers had slipped in with the wave of Syrian refugees. I said actually, most if not all of the attackers were from Belgium and France, and, judging from what I had heard on the news, the potential for this problem is greater in Europe due to the controversial Schengen agreement, allowing for the free movement of people across the European bloc. I told her I also heard that the vetting process in the U.S. is more thorough. And I asked, was she sticking me so many times because of our disagreement. She laughed and said of course not, which I knew to be the case. It was just one of those days.

I took a nice nap and then woke up and watched most of an episode of Bloodline. I had told my driver I thought I would be done early (because I have gone down to five rounds instead of six), but in actuality, I was done late, at 7 p.m. We closed down the place.

Getting home around 8:30 is a kind of strange time. Too late to eat a real dinner but too early to not have anything. In the car on the way back I had had a clementine, some popcorn and a piece of the banana bread I had made. At home, I had yogurt with chia seeds and raspberries and some of the Teddy Grahams that are an addition to the snack menu at the Kraft Center. The chia seeds made me feel healthy, and the graham crackers made me feel like a kid.

New kid on the block

Yesterday, after I played tennis at 8:30 a.m. with a group of seniors at Bay Road Tennis, one of the men told me, "You're too young to play. You have to be at least 65." I think he was kidding.

Turns out they are in their 70s and even 80s. Some of them look their age; others do not. They have obviously played forever and are good at what they do, including crazy spin and perfect placement. The only difference is that I run after the loose balls while they take their time.

I looked over at one player who looked younger and asked, "What about him?"

"Oh, he is in his 70s and he has two stents and no prostate." I'm not sure what the prostate thing has to do with tennis, but we'll just leave that be. It's just $12 for non-members, so I'll do it regularly except for going to a mixer once a month.

Thursday, I met a nice Jiffy Lube guy who, after seeing my yoga mat in my car, said he does yoga, and although the other Jiffy Lubers laugh at him, it's what keeps him in shape. The others can't believe he is 45. I told him to say hi to his yoga teacher Susan Moore, who had been my physical therapist.

I liked him because he did not try to sell me extra stuff, except for the air filter which I needed because a critter had chewed around the edge. He said if you take the filter out and put a dryer sheet on top, you will deter the critters. I told him I was overdue because I keep trying to come on Tuesday to get the discount but find the lines too long. He found another code to give me the discount "just because I like you."

On Wednesday, a new driver took me to Boston. I called the driver from last week and asked him not to take me if he has to be on the computer and on the phone. He said he has to dispatch and would send me another. As loud as the Turkish boss was, this driver was so quiet I could barely hear him. That was fine with me.

When I got to the Kraft Blood Donor Center, I found out that all the beds were taken by patients who had ports, and I would need to sit in a chair. At first I was unhappy because I thought it was the same reclining chair that had given me a backache, but it turned out to be a new heated chair that even vibrates as though you're in a nail salon. I got so relaxed I dozed on and off sooner than I usually do.  From across the room, a patient was telling my nurse, Roberta, about his cleansing diet. He started talking about the protein drinks he takes, and then Roberta talked about her own concoction, and one thing led to another until she was pulling up photos of wheatgrass on the computer screen and saying how good for you it is. Esther brought over some Halloween candy and opened it for me. These distractions almost made me forget the big needle in my arm.

In this way, the time passed, and before I knew it, I was done.

When bad things lead to good outcomes

I had a lovely brunch yesterday with my friend Bev Bloomberg at Jake's in Northampton, where I reminisced about how Jim and I, when living in Florence, used to bring our newspapers down there.

When the conversation turned to seemingly bad events that had led to positive outcomes, I realized I had a new medical adventure that was turning out differently than I expected, namely the ECP, or photopheresis to treat my graft vs. host of the skin.

I was dismayed when I learned in May that I had to do this for two consecutive days for three hours at a time for 12 weeks and then one day a week for another three months (where I am now) and then  after that with decreasing frequency.

But in addition to improving my overall movement and my tennis game, it has led to meeting a new group of warm, funny, caring nurses and another great doctor, William Savage, medical director of the Kraft Family Blood Donor Center. He is so easy-going and friendly. The first time I was in there I was squirming in my chair with that big needle in my arm and couldn't believe I could last for three hours, but he said, "Just make yourself as bored as you can get, and the time will pass."

Actually (except for the matter of the big needle and keeping my arm straight), I can now say, although it is hard to believe, that it is pleasant to be there. The nurses fuss around, arranging your pillows, bringing a warm blanket, joking and sharing their stories. I mostly read the New York Times on my computer, or watch a little something on Netflix, or read a bit of a New Yorker or a few pages of a book. It's hard to turn pages with one hand. Most often, I fall asleep.

Dr. Savage is especially interested in the changes in my tennis game. First thing he says when he walks by is, "How is your tennis game"? I'm the only tennis player who has passed through there. I said maybe they'll do a study on me. I also told him that I'm moving better in yoga because my skin is less tight.

The other things that came up with Bev were:

#1 Bad thing: losing 12 teeth due to being immunosupressed for so long, with the positive outcome of one of the surgeons seeing a suspicious spot on my tongue and that spot turning out to be precancerous cells. I'm not saying it was fun to have a piece of my tongue scooped out – it hurt like hell for a long time afterwards – but that was the end of it, and I was saved from a worse outcome. I thought about this when beautiful Ann Gregory survived a blood cancer and a bone marrow transplant but succumbed to a squamous cell cancer that started undetected on her tongue.

#2 Bad thing: missing my cousin Nancy's 60th birthday bash in California due to double pneumonia that landed me at Brigham and Women's Hospital instead of on a plane going west. Positive outcome: a scan to find out the extent of the pneumonia led to the discovery of a small kidney lesion (euphemism for cancer) that otherwise would have gone undetected and most likely led to full-blown kidney cancer. A surgeon was able to remove a small section of my kidney. Not that it was fun to have that kidney resection surgery on Katie's birthday two years ago – and again, I remember standing in my kitchen crying hysterically because the pain medicine wasn't working and the doctor's office hadn't returned my calls – but now all I have is the scar and the memory of another narrow escape.

As I write this I can hardly believe this all happened to me.

But it did, and I just want to say, you just never know how things will turn out.