Thursday, July 24, 2014

Three easy appointments

My three appointments in Boston on Monday went amazingly well in terms of time waiting to be seen and results received.

First stop: the head and neck oncology department at Dana-Farber for Dr. Goguen to check my tongue. She said it looks fine and since it’s been fine for a while, I only need to see her in a year.

Next, I went halfway along the bridge connecting Dana-Farber and Brigham and Women’s to get a therapeutic phlebotomy at the Kraft Donor Center. This was the procedure I had attempted to get in Springfield a couple of months ago but could not get due to a hemoglobin below the cutoff line.

This time I was able to use the test results from my Dana-Farber visit a week earlier, which showed a hemoglobin of 11.3. At the same time, the phlebotomist drew a tube testing my ferritin level, which Melissa reported was down to 2362, in other words good news.

It will still be a while until I get it down to the normal range of between 18-160 (nanograms per milliliter). But due to a combination of this “blood-letting,” the withdrawal of blood during my regular tests and my daily dose of the disgusting Exjade, it’s way better than after I received the countless transfusions I needed during and immediately following treatment. I don’t exactly remember what it was, but I know it was more than 5,000.

Anyway, that done, I got to my 4 p.m. with Dr. Shoji, the surgeon who had done my hernia repair. Dr. Alyea wanted him to check the lipoma on my thigh; Dr. Shoji said it was harmless and recommended leaving it alone.

I was so exhausted from all the excitement in New York and probably also from the blood draw that I had trouble staying awake on the short drive to Newton, where I was going to spend the night.

I fell fast asleep on Diane and David’s couch for maybe two hours.


It was nice to have dinner waiting when I woke up.

Monday, July 21, 2014

Three days of star-studded summer fun

I hardly know where to begin in writing about my fabulous, fun-filled, star-studded three days in New York, so I will begin at the beginning, which is that I went to New York to see my cousin Chaska Potter and her band Raining Jane perform on the Today Show with Jason Mraz on Friday.

I've already posted the photos on Facebook, but for those not on it, I thought I would post a quick recap.

The Janes and Jason Mraz have been writing songs for eight years, but the collaboration has hit the big time now with the release of their new album, Yes!, marked by beautiful harmonies and wonderful chemistry.

I went down the night before and slept on my cousin Jeanne's couch. Six of us got VIP tickets enabling us to get an excellent spot on the plaza where the summer concert series takes place. This meant getting there at 5:30 a.m., but it was all so exciting that the even earlier rise time didn't matter. Afterwards a bunch of us went out to breakfast.

My cousin, Chaska, is second from left on the Today Show stage.

Some of us got a little crazy.
Usually I like to get in a run around the Central Park Reservoir, but I was so tired that afternoon that I knew it wouldn't work. Still, it was such a beautiful afternoon that I spent most of the day walking around.

On Saturday, Chaska, her sister Serena, and their mother, my first cousin Nancy, had tickets to see their friend Sara Bareilles at Madison Square Garden. They know each other from way back when; Nancy tells the story of stepping over them while they slept on the floor at her place in California.

Serena had an extra ticket, and so I got to go with them. Beforehand, I cought up with Nancy at a rooftop dining area in a restaurant right near Madison Square Garden on a perfect, balmy summer night.



I am running out of adjectives, which is different for me because I am not normally so effusive. But anyway, next came Sara's amazing show, after which I went backstage with my cousins and met their friend.

On Sunday, with one activity left to go – a family brunch at Marge and Bill's – I was still determined to get my run in. I only had a little over an hour, which I figured would get me cross town to the reservoir and part of the way around. I thought I would go a little less than half-way around and then turn back because I wasn't sure I had time to do the whole thing.

In the what-was-I thinking category, I turned around where I had planned and realized it was impossible due to the one-way traffic pattern and the crush of runners who would be coming towards me.

I had no choice but to keep going. Since I didn't want to be late, I ran faster than I thought possible. With all that music in my head and the thought of all of those big smiles and such happiness about Raining Jane's success, it wasn't difficult at all.
From left, me, Serena, Sara, Chaska and Nancy






Thursday, July 17, 2014

Running is coming along

I ran three good miles today, opting again for the road instead of the path around the obstacle course of sticks and stones around the lake.

I went up to Ferry Street and then continued a little past Brunelle's Marina. It is so pretty out there. I started setting markers like I used to do, picking it up a notch between two points. You can't really get any faster if you just maintain the same pokey pace, plus it feels good to try a little harder. I think I'll stay at this distance for a while longer and then add a little at a time.

I'm going to New York today to get up bright and early tomorrow to go to The Today Show, where my cousin Chaska Potter and the band Raining Jane will play on the plaza. I'm looking forward to our mini-family reunion.

Saturday before I come back home, I hope to run around the Central Park Reservoir like I did on my last trip to New York. It is so much fun, especially when I am not struggling.

In other physical fitness news, I decided that instead of complaining about my no-longer-flat abs, I would do something about it. I'm going to try to go to Pilates more at the Y, for starters. I just never liked it as much as I like yoga, but since it's there, I should try it.

Also I looked up exercises on line and found Top 10 Abs Exercises  from Fitness Magazine. Some are the usual, such as plank, and for some that need a little explaining you can watch a short video.
The funny thing is that you have to watch the ads, which are all for ice cream.

I did them once and felt very virtuous. Now I have to do more than just write about it.

Wednesday, July 16, 2014

On staying awake and staying cool

I had quite the hangover yesterday from the oxycodone and Benadryl I had taken the night before, causing Diane to say I looked like I was ready for a nap and I should stay in their central-air-conditioned haven a little more.

But I had basically just gotten up, and although I wanted to stay, I also wanted to get home.

A three-shot cappuccino from Starbucks did the trick, and I got home with no problem.

We have both turned into our mother in different ways, and I heard my mother's voice in Diane's when she said, "Turn on the air conditioners!" She has talked to me on the phone when I have been lying on my couch sweltering because I don't want to turn the room air conditioners on. I dislike their noise and I dislike the electric bill.

Joe turns it on, I turn it off, and around we go. Diane is right that it probably costs more to turn it on and off than to just let it be.

Sometimes I leave the lights off in the living room because we mostly live in the other part of the house. This creates a kind of black hole. My mother liked having a lot of lights on. It definitely creates a more warm, homey atmosphere.

"Turn on the damn lights!" she would say. "I don't care about the electric bill!"

Probably the small amount extra to turn on a couple of lights does not impact my global footprint or my electric bill. So sometimes when I go in to turn those lights on, I say to whichever child is around, "I'm turning on the lights for grandma."

I should turn on the air conditioners for myself, before I melt.


Monday, July 14, 2014

Blood tests, biopsies and other fun things

I had two more possible squamous cell cancers removed today in a "scoop biopsy"  – one on the top of my left hand and the other on my left forearm – mirroring the one on my right are from three weeks ago, so that if nothing else I will have symmetrical little scars.

In the "what was I thinking" department, I planned to go home tonight, but I am staying in Newton instead. I forgot how much these things sting for at least the first 24 hours. For some reason the one on my hand is also itchy, so I took an oxycodone and a Benadryl. I definitely expect to sleep well tonight.

The dermatologist also froze several spots on my face, proclaiming that I had gotten the royal treatment.

Earlier in the day I had a checkup with Melissa. I had been a little anxious when a previous test revealed slightly lower numbers. They are still not back to their most recent high,  but Melissa said not to worry, they are all fine. Since I am not trading in money and the only investment is in my comfort level, I will have to let it be.

White count: 9.1 (normal=3.8–9.2)
Hemoglobin: 11.3 (normal=11.9–15.0)
Hematocrit: 32.8 (normal=34.8–43.6)
Platelets: 127 (normal=155-410)

This was going to be my big three-month interval between appointments, but I went back after two anyway with concerns on my mind. We're just going to keep it at two next time because there are so many things to monitor.

Next Monday I have two more appointments with different specialists, so back on the Pike I will go.


Saturday, July 12, 2014

Nightmares of a pill popper, and other hauntings

I dreamt I went to France and forgot to bring enough prednisone.

I had two but then accidentally dropped them in the dirt. I had no idea how to find a pharmacist who might be able to contact my doctor to get some more.

In reality I was in Wellfleet with enough pills to last a week: 210 of them. I did this because I had just filled all my day-of-the-week pill boxes and had thrown them in a bag to take on my long weekend. Sometimes when I am too lazy to fill all the boxes, I have to rummage through the bag and take out each bottle one at a time. In that case when I go to Newton overnight, I take the whole thing.

Diane laughs because for years I kept them in the same paper bag that I got them in upon my hospital discharge. The bag was falling apart, but I kept it out of superstition: If I had survived that long by using the same bag, I better not discard it for fear of something bad happening. I finally took a deep breath only recently and got a new bag.

It is important to bring enough pills because one time I didn't bring extras and I got very sick in Newton. Diane had to go to the local pharmacy and get prescriptions faxed from my doctor's office. It seems like an easy enough thing to do, but it was really a hassle, so for a long time she asked, "Did you bring enough pills?"

I had a beautiful day in Wellfleet yesterday, only to have a nightmare about my teeth last night. I had an appointment with a dentist at a hospital and was racing to find the right room. When I got there I found people lined up on stretchers being tortured by a dentist along the lines of the former Nazi played by Laurence Olivier in "Marathon Man."

As he approached me when it was my turn, I ran out of the room crying, dashing through corridors looking for an escape.

I have too many pills and too few teeth.

But I am alive and it's a beautiful day. My nephew Sam has just come back from one of our favorite bakeries, The Flying Fish, and he has brought me a blueberry muffin. Soon we're going to go for a ride on Sam and David's boat.

Thursday, July 10, 2014

A (sort of) poem for the morning

The splotches on my arm are fading
I don't see any on the way.
and bad thoughts are at bay.

Maddie did her down dog
and licked my fingers when I did mine.

Then it was time for coffee.