Tuesday, December 30, 2014

New York, New York, it's a helluva town

New York trip: Fun, fun, fun.
New York selfie
Drove in on Saturday and got a spot good for the two days we needed. Happy feeling.

New problem: Earworm.

Definition: A song that sticks in your head.

Cause: The song "New York, New York," from the wonderful musical, "On the Town."

Now you can have it too.


Saturday, December 27, 2014

Blessings and a trip to the Old Country

Chocolate babka (from New York) for dessert, now chocolate babka for breakfast, and a fun family gathering at my house last night where the conversation, of course, turned to the Seinfeld chocolate babka episode.

It was our post-Hanukkah gathering and thanks to Sam, Diane and David for bringing the dessert. We exchanged small presents and had dinner, giving me reason to use my mother's silver and the embroidered tablecloth bought by my parents in Portugal. Katie, a specialist in setting a nice table, gave me a choice of ceramic napkin holders with these words written on them: love, joy, blessings, abundance and peace.

I chose blessings.

Today we are heading to the Old Country to see "On the Town," preceded by dinner at Ellen's Stardust Diner, home of the singing waitstaff.

The last time I wrote that I was in the Old Country, some people thought I meant Ireland.

I was happy to see this heading of a section in the menu at the Lone Wolf in Amherst offering latkes, bagels and blintzes supporting my point of view.

"From the Old Country...well, New York."

Well, must go get my act together or we're not going to make it for dinner.

Wednesday, December 24, 2014

Prednisone taper: the good and the bad

When Dr. Alyea cleared me to decrease my prednisone from 2 milligrams a day to 1 mg. a few weeks ago, I was very happy.

Prednisone suppresses your immune system, and getting off of it means also getting off the other drugs that I take to prevent pneumonia and CMV – Cytomegalovirus which I have had several times.

I also got the go-ahead to taper another drug, Nexium, and he wanted me to do that first so that if I have problems I will know which taper to blame.

So far, so good. Now it is just about time to decrease the prednisone. Yet I am reluctant, and here is why: Prednisone mimics cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. People must gradually reduce prednisone dosage to give their adrenal glands time to resume their normal function. The time it takes to recover depends on dose, individual physiology and duration of use.

Withdrawal symptoms can include fatigue, weakness, body aches, joint pain and depression.

I have certainly tapered slowly, from 40 mgs. at my high point, but I have been on it so long – almost six years – that I am concerned about getting symptoms anyway. Dr. Alyea told me that it should be fine because I am on such a low dose that my adrenal glands are already working.

Still I am concerned. I remember my friend Patricia (PJ) getting so depressed when she went off that she basically begged to get back on.

With things to do such as Chinese food with the Chipkins tonight and a trip to New York on Saturday with Katie to see “On the Town,” I don’t want to risk it.

All things considered, my New Year’s resolution is pretty easy: Take one less pill a day.

Tuesday, December 23, 2014

Hanukkah party worth the long drive

Nothing like driving for a long time to give you the pent up energy to fuel a (relatively) long run.

But to back up: I drove to New York on Sunday for my cousin Peter and his wife Anne's Hanukkah party in Riverdale, then after that drove to Ben's in Fairfield, then spent the night and drove back home yesterday.

It is not the kind of driving I usually do alone anymore. Well, I guess I wasn't exactly alone because on the way down I got tired enough that I had to stop at a Mobil station and get the bag of Fritos and the Coke that accompanied me into New York. By the time I got to Ben's my eyelid was twitching!

It was worth it, though. I saw relatives that I hadn't seen for a while, relatives I see on Facebook and also friends of relatives and relatives of relatives. We had sandwiches on the kind of New York deli rye that you can't get anywhere else. I indulged on thick corned beef sandwiches and cole slaw, yum, and talked to a lot of people.

We of course lit the candles and then had presents. I was surprised and happy that I got two scarves...especially since I still haven't found my bag of winter stuff.

We have a small family and I'm glad to be able to keep up with relatives on happy occasions.

When I got home yesterday I ran into the house, put on my running stuff and flew out of here. I ran to Brunelle's Marina and back and didn't feel tired at all. A police officer looking for speeders was parked on the shoulder and pulled a little off the road for me. I asked him if was going to give me a speeding ticket and he said, "Not this time." (I hope he wasn't projecting onto some other time.)

For some reason I thought that run was three miles, but I checked it on google maps and it is actually 1.9 miles one way. So almost four miles.

I skipped St. Pat's last year due to the spate of terrible pain I had in my quads (probably from prednisone), but I think that I might actually be able to do the next one. Toes crossed.

Friday, December 19, 2014

Ferritn fight going well

Every time I see this little bottle of Exjade, I have a Pavlovian response: I get queasy and want to back away.

Sometimes I find a reason to skip a day or to put it off until later in the day. For example if I have to leave the house early and don't have the time to wait for 30 minutes to eat after I dissolve the five pills in 7 ounces of water. After chugging it down I get a burst of instant nausea and heartburn. A nice way to start your day.

But then I remind myself why I need to keep taking this very expensive drug (luckily covered by insurance) whose trade name is deferasirox.  I must keep chipping away at my high ferritin level so that my liver can have relief from all that stored iron resulting from so many blood transfusions.

For motivation, I need only look at the list of the problems that according the Iron Disorders Institute are caused by iron overload: Excess iron in vital organs, even in mild cases of iron overload, increases the risk for liver disease (cirrhosis, cancer), heart attack or heart failure, diabetes mellitus, osteoarthritis, osteoporosis, metabolic syndrome, hypothyroidism, hypogonadism, numerous symptoms and in some cases premature death. Iron mismanagement resulting in overload can accelerate such neurodegenerative diseases as Alzheimer’s, early-onset Parkinson’s, Huntington’s, epilepsy and multiple sclerosis.

The results of my latest ferritin test were still pending on my last visit to Dana-Farber. So Melissa emailed them to me this week, and I am happy to report that the level is down to 1601.

This might not seem great considering that normal ferritin range for women is 11 to 307 (nanograms per milliliter). I forget what mine was when I started this process, but I know it was around 6,000 or even 7,000. When it goes below 1,000 I will really see the light at the end of the tunnel.

I wish that I could share this with PJ. It was one of the things that we compared. She was the one who suggested addressing it additionally with therapeutic phlebotomy, something else that I like to put off until I remind myself of the benefits. It has been working out for me to get this done at the Kraft Blood Donor Center at Brigham and Women's when I have another appointment and am staying overnight. But I am overdue and need to schlep over to Baystate to get it done again asap.

PJ and I had our own little support group for these things. You can't expect most people to jump for joy when you tell them your ferritin is down. Only someone experiencing this battle can really get it. But I am sure my health care team can. I look forward to the day when I can toss my leftover pills in the trash. That is like throwing away gold, but I imagine the manufacturer, Novartis, does not want them returned.

Maybe I can do it ceremoniously at Dana-Farber. That would feel good.

Friday, December 12, 2014

Dana-Farber summary: happy

I know how far out I am, but to see it on Dr. Alyea's screen at Dana-Farber yesterday was something else: five years, 10 months, two weeks.

Younger than Maddie, but older than I ever thought I'd be.

My counts were excellent: white and red both normal, with my hematocrit as an all time high of 35. Platelets were good too: 140, which although lower than the normal range of 150-450, is excellent for me.

My liver enzymes are lower (which is good), so I get to decrease my prednisone to 1 mg. a day.

As he shook my hand to say good-bye, Dr. Alyea said something that I wrote down so I could remember the exact words: "There's no greater pleasure for us than to visit with you."

Music to my ears.

Then I was off to see Dr. Lin for a PDT follow-up. She was pleased, although she did zap a few spots that had resisted the light therapy.

She also told me the answer to a certain mystery. I had complained to friends that I thought my stomach was getting fat despite all my exercising and Pilates classes. But it is not fat after all, and it looks a little different. It is graft vs. host of the skin. Sorry, TMI, but I also have it on my thighs. Always something.

One treatment is more prednisone, but I definitely don't want to do that. Dr. Lin has prescribed a cream and a visit in a month to yet another specialist, a doctor who focuses on graft vs. host of the skin.

I never did get my eyes checked out for the graft vs. host that I have been treating with Restasis eye drops. My appointment was at 3:10. I think they must triple-book. Two hours later when there were people before me and I still had not been seen, I was so angry and frustrated that I up and left.

I will reschedule for an earlier time when they are not so backed up.

Wednesday, December 10, 2014

Check-up anxiety and cancer nightmares

As check-ups approach, nightmares unfold. Sometimes.

It's been a long time, so it happens less frequently.

Back in the period after each transplant, I often took an Ativan the night before so I could get some sleep. That never even crosses my mind. In fact, last night I slept like a log, waking up at 7:30, which is late for me these days.

I didn't get any formal exercise yesterday, but I think I got exhausted from running around in yesterday's deluge– from tutoring to errands to last-minute oil change that was overdue – and getting soaked because my little umbrella blew inside out.

My nightmare the other day makes sense in light of my friend Ann's death from squamous cell cancer:

I dreamt that my dermatologist removed and biopsied two likely squamous cell cancers from my arm. They were larger than the usual ones.

"I wish I could tell you I wasn't worried about these," she said.

Doom and gloom.

I have three appointments in two days, and one is with my dermatologist tomorrow. It is just to check on my skin after last month's face fry, or Photodynamic Therapy. It looked horrible at first, but now I think it looks pretty good, and I think she will be pleased.

Also tomorrow, I have my check-up with Dr. Alyea. I feel good so I am not worried, but there is always that split second of anxiety while you wait for your counts to come up on the screen.

Today I am going to Mass Eye and Ear to see the cornea specialist Dr. Reza Dana, who is monitoring my eyes for the low-level graft vs. host that I seem to have. I've been using Restasis eyedrops frequently during the day, so we'll see how that has been working.

Also today, I'm seeing my social worker, Mary Lou Hackett, which I do from time to time. I sent her the blog posts I wrote about the deaths of my friends, PJ and Ann. I think that when possible these things should be discussed with someone in the field of cancer survivorship. I don't know what I expect her to say, but I think that airing my feelings will help.

Tonight: sleepover at Diane and David's.

Friday, December 5, 2014

My basketball career, then and now

Me shooting hoops with the guys in Washington, D.C., in 1978.
One of my high school friends took the above picture of me when we were visiting our friend Emily in Washington, D.C. in 1978.

We were sitting in a park when I saw some guys playing basketball. I went on over and as you can see, shot around for a while. It was fun and they didn't seem to mind.

As I told my kids many years later when we played in our driveway, I coulda been someone if anyone paid attention to girls' basketball back in the day. I was on our high school team, but Miss Benson didn't teach us anything. We had two guards who stayed on one side, two forwards on the other, and rovers, which I always wanted to be, who could cover the whole court. And instead of having uniforms like the boys did, we wore silly pinnies.

There was more caché in being a cheerleader. I practiced one summer for tryouts, a day during which one older girl came over and pressed down hard on my head to get me into a fuller split. I never did make it all the way. Emily and I were thrilled to get our red and white pom-poms and uniforms but soon realized that actually being cheerleaders was anticlimactic. We were told that we performed like dead dogs and kicked off after just a few games.

On the basketball court, I had a decent shot and ease in running around but never learned how to move. When I made it onto the team at Vassar, I mostly warmed the bench.

Still, I kept playing after college, joining a Northampton recreation league team when I moved to Western Massachusetts. When Steeplejacks – sponsored by a restaurant in Sunderland ( no longer there) – disbanded after infighting outweighed fun, I played in Northampton with friends after work at the Transscript-Telegram.

I also went to the Y with my friend Greg Pearson to play basketball with the guys. At home, we had some fun in our driveway, although my unorthodox shot – arms raised overhead instead of one hand guiding – drove Ben and Joe crazy. They promised to put an end to that when they got tall enough to block me, which is what happened.

Play ceased upon the demise of our basketball hoop, which was cemented into the ground. It went crooked after Jim softened it up by backing into it, then I finished the job by backing into it again.

Cut to the present. The scene: The Holyoke Y, again. A group of guys usually plays basketball in the gym before the fitness classes that I take. The other night, as they were getting ready to leave, an urge came over me to see if, after years, I could still shoot.

It's a good thing my kids weren't there because they would have been SO embarrassed. I walked over and asked if I could borrow a basketball to take a few shots.

Well, I could not get my feet off the ground. Each shot was perfectly aimed, and the ball sailed...right under the basket. Probably thinking, "Crazy lady," the owner of the ball took a few shots to demonstrate. No luck.

I returned the ball, which frankly was dead, and went across the gym to where another ball with more air was lying. After a few more tries, I finally made a shot. Victory!

I jogged back to where they were packing up and said, "Hey you didn't see it but I made the shot!"

One of the guys smiled and said he had.

Probably thought, crazy old lady.

But I was happy. After all the serious things I have been through, I can still be a goofball.