Wednesday, September 17, 2014

Appointments and more appointments

I previously wrote that I was a genius in scheduling three appointments on one day, but it wasn't really so.

A reminder phone call alerted me to the fact that my checkup was Monday (day before yesterday), whereas my dermatology appointment is next Monday, so I will end up going back and forth twice after all.

No damage done. The checkup, followed by the therapeutic phlebotomy, was enough.

My counts are good, with platelets still still a little lower than normal but good enough considering that they were at rock bottom. My liver function is actually a little better. Melissa said we could talk to Dr. Alyea about maybe going down even lower on the prednisone. (I'm pretty low already  at two mgs. a day.)

Dr. Marty always seems to find me in the waiting room. I'm just sitting there reading and I look up and see his smiling face. He came over to Dana-Farber to see me and then had to get back to the hospital. It is always a tonic just to see him.

I took my printout showing the good red count over to the Kraft Blood Donor Center to get the blood removed in the continuing effort to reduce the iron overload in my blood. First thing the phlebotomist wanted to do was stick my finger again to test my blood. To which I said no thanks. She called a supervisor over and the supervisor told her to check her folder on me. Much rustling through produced the paper showing my hemoglobin at 11.7 – well above the 11.3 cut off mark. You really have to advocate for yourself.

I usually plan to spend the night because this procedure makes you anemic and therefore tired. For some (silly) reason I thought I would just head home and didn't even announce my presence in Boston. I got only a couple of miles, realized how tired I was, and called Diane from a CVS parking lot. She didn't answer. I fell asleep right there.

Luckily she was indeed home. I made it there and fell deeply asleep on the couch. By the time I woke up it was too late to drive home, so I stayed for dinner and the night. Diane grilled salmon, which always tastes better than when I make it. I usually overcook it, which is my way of preparing many things.

I asked her how long she cooks it and said, "Don't tell me to cook it until it's done."

David was in the living room, and they said in unison, "Cook it until it's done."

Tuesday, September 16, 2014

Complex case study: four stem cell transplants

The latest issue of the e-newsletter produced by the Dana-Farber Brigham and Women's Cancer Center's Adult Stem Cell Transplantation program features a complex case study: my own.

I never sought this distinction, but since it was given to me, I am glad it can play a role in spreading the word to other hospitals and doctors about this amazing team that provided not only top-notch clinical expertise but also compassionate care.

By clicking on  Advances in Hematologic Malignancies, you can see the whole issue.

Then drop down to Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia, followed by The Patient's Perspective.

As a bonus, people who hear me constantly sing the praises of Edwin Alyea, MD, and Melissa Cochran, MS, NP, of the Adult Stem Cell Transplantation Program can get to see their smiling faces at the end.

Sunday, September 14, 2014

Sunny day, scary dream

Friday was the kind of day that would have been good to bottle: blue skies, sun, 70s, and green enough that you could still hold on to summer.

Tennis in the morning with one group, tennis in the late afternoon with another, and writing in between. Probably too much tennis, and it showed, but I want to get in as much outdoor tennis as possible before it gets too cold.

Yesterday, I planned to get up and run, but I fell asleep at the kitchen table and almost fell off my chair. Then I put my head down on my arms and fell asleep again, waking up to pins and needles in my arms. I got to yoga late and could barely do my down dogs. Still, it was good to go, and later there was a dog walk in the rain, dinner with friends and the Art Walk in Easthampton, then ice cream.

Things are good, but still. The other night I dreamt that I relapsed.

I said to my doctor, Dan, "How can this be? I am more than five years out!"

He said it happens, that it could probably be treated. He knew of one person who had made it but also of another who had died.

I needed chemotherapy shots in my arm and hand every half hour. It actually hurt, and I was sick with fear.

Echoes of Patricia's death. One minute we were complaining about Graft vs. Host disease, and the next minute she was gone. We had been on parallel courses, and in the dream it was my turn next.

I woke up with a splitting headache and made the coffee extra strong.

Thursday, September 11, 2014

Success in scheduling, and in running further

Knowing the right person can mean securing a reservation at a popular restaurant, or getting good seats at a sporting event or finding a job, but for me at this time of my life it often means reaching the person who can get me a doctor's appointment.

This is especially important when I am trying to make multiple appointments on one day or on back-to-back days. And it is where I am especially grateful for friends like the office manager and scheduler extraordinaire at Brigham Dermatology, who gets me seen at short notice when something suspicious pops up on my skin.

 One day when I had time between appointments, I went to my favorite store in Newton Highlands and bought her a smooth stone with the word "calm" cut into it, telling her I hoped it would help her with patients like me.

A week from Monday, when I have an 11 a.m. checkup at Dana-Farber, she got me an appointment at 8 a.m. so Dr. Lin can look at what seems to me like a new squamous cell cancer on my hand.

Not wanting to leave Boston with only two appointments, I called the person who I know at the Kraft Blood Donor Center to set up an appointment for a therapeutic phlebotomy. That is the procedure in which a bag of blood is removed to continue chipping away at that high ferritin.

I will be tired but pleased that I have fit the pieces of that little jigsaw puzzle together.

On another topic, I am having good results with running a little further, a smidgen at a time. I had a talk with myself, which goes like this, "If you go a little further and then stop sooner just because you are a little tired, you are not increasing your distance at all." Being really tired is a sign to stop, but being a little tired simply means your body is dropping down a gear.

I thought I was going just about three miles or a little further, but I checked it on google maps and saw that my roundtrip has actually been almost four miles. If I just keep going up the hill to McCray's Farm, that will make it five.

Of course the danger is that if I do that, I might have to stop for an ice cream cone.

Wednesday, September 3, 2014

The world is a disaster. My problems seem small.

It is hard to blog about certain things when the image of a masked terrorist holding a knife to an American journalist on his knees in the desert is seared into your mind. And now there is another, and they even took a video of it.

It is hard to read and watch and listen to the news, and hard not to, and hard to avoid it anyway because the headlines pop up wherever you look.  It is hard to know that while we live in relative comfort, parts of the world are in the middle ages, and hard to know that we are not so safe as we think we are and that the very city (Minneapolis) where my daughter is teaching ESL (now ELL) to  Somali children is the same city where a Somali neighborhood is a breeding ground for ISIS recruitment of disaffected young people, as reported on NBC Nightly News.

It is hard to hear our once-passionate president say blandly that  "we don't have a strategy yet" for dealing with Islamic extremists in Syria, and to hear him say that "not doing stupid stuff" is an accomplishment, and also to hear him say, as we seek more urgency and reassurance, "The world has always been messy," while as Frank Bruni put it in an op-ed piece  in yesterday's New York Times, "'Messy' is my kitchen at the end of a long weekend. What's happening in much of Syria and Iraq is monstrous."

It's hard for me personally because my friend Patricia is gone. We were blogging partners, often writing on the same topic; one would lob a ball into the other's court and then it would return with something comforting or funny or just the words,  "I know how you feel."

That is basically why I have not written much in the last couple of weeks.

So. I think I see another tiny squamous cell cancer on the back of my hand – just a little raised freckle that looks odd to me – and I will have to make an appointment to go to Boston to have it checked out and probably get another punch biopsy. Ouch, but still.

So. I watch the US Open. I go to and watch the press conferences and recaps. I read about Roger Federer's wife Mirka and look at all the family pictures. I watch him float around the court and I remember years ago when I was in the hospital around this time of year and my sister said  that for a good distraction from leukemia and chemotherapy, I should turn on the Open "and watch Roger Federer who does not sweat."

It worked then, and it works now. For a while.

Monday, September 1, 2014

A good day at the US Open

With Donna Young and Lori Chase.
What a difference a year makes.

Donna and I thoroughly enjoyed the trip we took Friday to the US Open on the bus from the Enfield Tennis Club, where we met up with our friend Lori Chase. It was much better than last year because, (a) we knew the ropes, and (b) I wasn't just a month out of surgery like I was the year before.

Knowing the ropes meant going straight to one of the field courts, Court 7, and watching a good women's doubles match instead of wandering around, and then when we went to our seats in the nosebleed section of Arthur Ashe, following the lead of other carpetbaggers who did not go all the way up. You can do this earlier in the tournament and if someone comes, you just move back a little. Hence we had a good view of a three-set battle between Venus Williams and Sara Errani and were able to get in on the excitement by cheering Venus on. (She lost in the third set tie-break.)

After lunch we had good seats on Court 17 where we saw Roberto Bautista Agut win the match that will pit him against Roger Federer next.

It is just amazing to sit so close and see how hard they hit the ball.

Happy on the bus.
The other good news is that I did not get totally dehydrated in the heat and then proceed to drink two vodka lemonades made in a special glass with a list of the Open champions on it, and that I did not proceed to feel very sick in this scene that Donna and I can laugh about now: We needed half an hour to get back to the bus (scheduled to leave at 6:30), but we left too late, and our friend Deb Doner was walking at a very fast clip ahead of us and telling us to get a move on or we would miss the bus. Deb even wanted to get a pedicab for me, but all were full. Donna, who had stayed back with me, called ahead, "I can't pick her up!"

The bus of course did not leave without us. But let's just say that when I got on I did not feel well enough to eat the walnut chocolate chip brownies that the organizer of the trip brings every year.

This year we left plenty of time and even had a chance to wait on the grass and enjoy the day for a few more minutes.

I had my brownie, covered myself with my jacket and fell asleep, visions of tennis balls dancing in my head.

Sunday, August 17, 2014

Looking forward to the un-birthday party

My mother arranging flowers from my garden for my 50th
On my 50th birthday, I invited friends who lived locally over for cake, and when my mother, who was here with me, learned that I wasn't serving anything else, she was appalled.

I can just hear her saying, "You can't have people over and just serve them cake!"

A quick shopping trip ensued, and my mother worked her magic to produce some of her signature hors d'oeuvre plates. Then suddenly the house filled with people from work and the neighborhood celebrating with me not any ordinary birthday but one that marked my coming through chemotherapy and a bone marrow transplant with flying colors.

Well my mother is no longer here – though I do feel her with me – and as my 60th birthday approached, I thought, been there, done that, and I am not having another party.

My thoughts were mostly of the angst variety, tempered by:

Ben telling me to get over it, I was basically already 60 and I have a long road ahead of me, and
others telling me to see it as a celebration of how much I have survived.

Whatever. I planned the un-birthday party, which would consist of going to a Red Sox game with the kids. It will be Red Sox vs. Mariners a week from today.

Next up came Diane and Margaret wanting to take me out to a nice dinner in Boston, which we are doing Friday night.

On Saturday, my friend Katryn is coming down from Maine, and we might go on a Harbor Cruise or do some other fun thing to celebrate our birthdays, which are a couple of days apart.

For the icing on the cake, Emily (who lives in Pittsburgh) is coming just for dinner and an overnight on Sunday because she will already be in the Northeast.

And voilĂ !  The un-birthday party has turned into four mini-parties sort of like my mother's fabulous appetizers instead of one big meal.

Now my angst has become anticipation.