Sunday, August 28, 2016

Why I won't say I'm cured (fingers crossed)

Baseball players and managers, known for their superstitions, might have a rival in cancer survivors.

My social worker once told me that she had a patient who always wore the same pair of earrings to the clinic because she had gotten a good report with them on and didn't want to jinx herself.

For years I carried around my meds in the brown paper bag that my discharge nurse put them in when I left the hospital after my fourth transplant in 2008. Since I had stayed healthy using the same bag, I didn't want to jinx myself by getting another. I finally gave in when the bottom of the bag started to rip and stray pills fell through the holes. (I haven't upgraded, though. I still put them in whatever I can find. Lately it's a plastic bag from the supermarket.)

I bring this up because when writing my upcoming essay in espnW.com,  I used the word cured in sentences without ever saying it directly.

For example, even though after five years I was officially cured (knock wood), I have to say, "They say I'm cured," rather than "I am cured."

The point of the essay is that tennis helped me get to where I am. It is expected to run Thursday. If you read it you will notice that I never said "tennis helped me get cured." I had to explain this reluctance to the editor and I think she understood.

I know that this all amounts to magical thinking but I'm still not going to run the risk of jinxing myself.

On the other hand (I can hear an editor saying, "on the other hand, I have five fingers," meaning it's a silly phrase but since it's my blog I'm gonna do it anyway), the first time I hit the two-year mark when my doctor had said "you can break out the Champagne," I consciously didn't have a big celebration, instead having coffee with friends, because I didn't want to send a hubristic signal to the universe that might cause my hopes to be dashed.

I relapsed anyway, therefore showing that going undercover didn't help me.

Still, I'm not going to say I'm cured. But I welcome other people saying it about me.

Monday, August 22, 2016

Strange phone call from local doctor's office

For a short while I was a patient of a local primary care physician, but I stopped seeing him shortly after my first relapse in 2007, and here is why.

When I told him that my Dana-Farber doctor, Dan DeAngelo, had suspected relapse when my white blood count dropped and had therefore given me a bone marrow biopsy, the local doctor said that was a good catch and he never would have thought of it. So while he did not miss a diagnosis, he basically said he might have missed it.

Unable to feel confident in him anymore, I switched to another doctor and forgot about it.

Then a few weeks ago I got a message from the first doctor's office. Please call back, the doctor wants to talk to you.

"Maybe he wants to know if I'm still alive," I thought. "Or maybe he wants to know how I am."

I did call but got put on hold so long that I hung up.

I missed another message so called again and this time succeeded in getting through.

His receptionist said the doctor just wanted to know if I was still a patient.

I said, "Well, the last time I saw him was in 2007, so, no."

"That's what we thought," she said.

And that was that.

I am not losing sleep over this but I have to say that it rubbed me the wrong way.

He had obviously looked at my chart and been reminded of our last visit. It's a small town and a small  practice — not a large one where you might think they were cleaning out their files and didn't have time to look. For a minute I thought of saying why I had left, but she didn't ask and I didn't have the energy and didn't see the point.

On with the show.

Friday, August 19, 2016

Falling in love with a new guy, or, the time I lost and found my sandals

Mark and Bernice Fournier
I knew I was in love the minute he touched my right big toe and ran his hand down the sole of my foot and knew exactly what I needed.

I need help with my LEFT foot due to the way it is falling, causing my ankle to list outward, thereby putting pressure on my RIGHT foot thereby causing the past plantar fasciitis and current big toe pain.

All this time I have had an orthotic that corrects the right foot more than the left, so...

I had to wait about a month to get into Fournier Foot Care Center in Northampton. Owner Mark Fournier, who has been making orthopedic foot products for 32 years, is a popular guy. I learned a new word when I saw him yesterday: he is a certified pedorthist. 

He knows and appreciates the work of Ken Holt, the physical therapist who (knock wood) fixed my plantar fasciitis, but he said that as a pedorthist he sees things a little differently, and he could see right away that my left foot needed a different orthotic to straighten out my ankle.

This might not seem such a big deal except that I have wanted to keep running, even just a little, but most times afterward my big toe hurts, which is not the case when I play tennis because in the former you pound more consistently. I always feel in a better mood after I run and I have missed the endorphin boost. Because, well, don't read if you already have, but running saved my life.

Naot Paris sandals
The reason I went to see him is that I THOUGHT I had lost my Naot Paris sandals and I THOUGHT that Masoud Hakimzadeh, the now retired owner of Comfort Shoes, had modified their insoles to keep my plantar fasciitis at bay. I looked all over for the sandals and finally ordered a new pair because they are sooooo comfortable. Then I made the appointment to get them adjusted.

Meanwhile, our friend Jane was at my house looking at something on Facebook with me. Since I had ordered them online, an image of the sandals kept chasing me around. I hadn't gotten around to x-ing it out. (Of course you can't make it go away unless you give a good reason, so I put I already own these shoes.)

Jane looked at the sandals and said she had forgotten to tell me they were at her house.

JANE!

She said that when I had come over a few weeks ago to have Jim Bloom take a photo of me in my Hoka One sneakers to run with my story in Womens Running, I had left the sandals there.

I decided to keep both because the old ones were looking the worse for wear.

But it turns out the old ones had the original insoles. Apparently they were so comfortable because I had molded them to my feet through wear. The Comfort Shoes guy had made me orthotics for something. I just don't remember what.

Fournier said he would adjust the new Naot insoles and I could keep the old ones for beach shoes. Then he took my orthotics that I wear in my sneakers and tennis shoes into the next room. He returned in just a few minutes, having adjusted them to correct the leaning on the left. He also made an indent for my toes to take the pressure off of them.

Most importantly, he was the NICEST guy.

His wife, who runs the business with him, interrupted our visit several times due to printer problems she was having and questions from a customer who had come into the store. A sign on the wall said the minimum payment for a visit is $38. But when I asked him how much I owed, he said nothing except for the charge for modifying the Naot insoles, which I'm picking up tomorrow.

I hadn't even said to him my oft-repeated truth: "I complained more about plantar fasciitis than I did about leukemia." So I didn't think he felt sorry for me or anything. I think he was practicing good customer service.

I know that doctors have to try their best to run on time, but I'm still annoyed by the Brigham and Women's endocrinologist, Eva Liu, who said on Wednesday that she wouldn't see me because I was running slightly past the 15-minute grace period. My ride had been late, therefore making me late for my 10:40 a.m. appointment. I called ahead and said I was in the area. The receptionist said it would be up to the discretion of the doctor if I was more than 15 minutes late and she would probably have me rebook because I would be about 10 minutes past that. When I emailed Melissa from the car, she called the doctor and said I had come a long way and I could wait up to four hours because my next appointment wasn't until 3. But she said no, so I cooled my heels until going to my next appointment.

In all my doctor visits, I never encountered anything like that. I might have waited for a long time, but I would have been seen.

I have cried over some things lately. But when I emailed Melissa about the problem, I wrote, "At least I'm not crying."

My bone density test was already on record so we were just asking for a consult on whether I should do anything for my bones because prednisone can be weakening them.

Thanks to a nice doctor in Northampton, I feel good about the prospects for my feet.

I guess my bones will have to wait until we rebook...with another doctor.

Wednesday, August 17, 2016

Long day with lots of talk and little action

I skipped tennis because I had to schedule two appointments for today. But only one happened, so I could have gone to tennis after all.

The driver was 15 minutes late. He called to say there was no 32, but I assured him that there was. I went down to the foot of the driveway, saw him driving past, and told him to turn around.

I couldn't be upset with him, though. He was like one of our tennis friends who used to show up late, or not show at all, when we played in Forest Park before going to work at The Republican. He would flash a grin and say he was sorry and we would forgive him.

My driver was super polite and actually very nice. He also talked. A lot. He asked if it was OK if he stopped at Cumberland Farms — he had driven to South Hadley from Boston — and when he went in for coffee and milk chocolate he asked if I wanted anything. I said no thanks, and he asked, "Are you sure?"

He was glad to be in Massachusetts because he is in the National Guard and just got back from training in sweltering hot Louisiana. He is from Chelyabinsk, the Russian town that he said nobody ever heard of until a meteor exploded over it in 2003. He was living in the U.S. at the time. His grandfather was convinced that the Americans were attacking and ran out of the house in his underwear to find a bomb shelter. His grandmother was so angry she locked has grandfather out.

He is just doing the driving for the rest of the summer to help out the friend who runs the company until he starts school next month at UMass Lowell, where he is going to study engineering. He asked if I minded if he turned on NPR. I thought that was a good idea.

So, as I said, I wasn't angry at him but I was upset when I called the endocrinologist's office, where I had a 10:40 a.m. appointment, and said I would be late. In addition to leaving late, we ran into line painting. The person on the phone said that if I was more than 15 minutes late I would have to rebook. I emailed Melissa. I never worry when I email her because I can always count on her to get back to me as soon as she can. It looked like I would be 25 minutes late.

Melissa emailed right back. She said she called and spoke to the doctor directly. She told her that my next appointment wasn't until 3 p.m. and that I would wait until she was able to get me in. The doctor said no. Melissa is going to find me another doctor... I said I hoped my bones didn't crumble by then.

Dr. Alyea wants an endocrinologist to weigh in on the condition of my bones to see if they need to add any new medication to counteract the prednisone, which I need to continue due to my GVHD.  Prednisone can increase the risk of osteoporosis.

I got to Dana-Farber four hours early. I thought of walking down to the Museum of Fine Arts but I never made it because I was tired from staying up late to watch The Olympics and do whatever I do that keeps me up late. I fell asleep in a chair. Then I decided to walk over to The Brigham to have lunch at Au Bon Pain. They could take me a little early at the Kraft Blood Donor Center so I went there at 2:30 instead of 3.

On the way back, my friend the driver started the conversation in an interesting way.

"Say you're a woman," he started.

"I am a woman," I said.

Laughter.

He said he is dating a beautiful woman who said she always dreamed of having a beauty mark on her face a la Marilyn Monroe. He wanted to know what I thought she would think if he mailed her a fake beauty mark with a note that he wanted her dream to come true. I said I didn't know. He has been  married for five years and isn't divorced yet and isn't sure it's healthy to be going out right now because people say you might not be ready. His friend's girlfriend came on to him. This made him uncomfortable. He asked what I thought and I said I agreed it was a bad idea.

He has been told he has a phenomenal intelligence. He has also been told that he has high serotonin levels. This gives him a natural high much of the time. This has something to do with why he frequently gets goose bumps. He told his mother, who is still in Russia. She agreed it is strange. He came up with a good stretch that you can do while sitting. You press down on your thighs with your hands and that straightens your back. But you have to do it right. He loved all the trees approaching my house. But why do I need that house? I should move to Brookline.

I am exhausted from listening so much and from sitting around all day. It is not the good kind of tired you get from exercising. I would have been less tired if I had gone to tennis for three hours.

Saturday, August 13, 2016

At a road race headquarters, but not running

Image designed by local artist for T-shirts
Yesterday I left home at 4 p.m. for Shelburne Falls to volunteer handing out T-shirts for today's  Bridge of Flowers 10-K Classic and 3-K Charity Race   I returned home at 9, wilted from standing in the heat but glad that I did my part to support The Cancer Connection, one of the beneficiaries of the race and a big help to me and to many. I briefly entertained feeling sorry that I wasn't running, but since I never wanted to run the hills in the heat anyway, I gave that up and had a good time.

I talked to some nice people and wished the runners well. I also got a spaghetti dinner, ice cream and....drumroll...another T-shirt to add to my collection. While eating dinner, I sat next to a 75-year-old Senior Olympian who has run 17 marathons. She said that when she turned 60, she vowed to run 60 races that year. Instead, she ran 63, including a marathon. After a car accident at age 50, her doctor told her that she would never run again, but she proved him wrong. Hmmmmm, I thought, a possible story. I gave her my card and took her number in case I am able to successfully pitch a story about her.

It was a rare day when I didn't get any exercise. I sat at my dining room table writing and got so in a zone that before I knew it, it was time to leave. I got some exercise lifting boxes of T-shirts at Buckland Shelburne Elementary School so that was my weight-lifting for the day.

For the first time in a long while, bad weather canceled our Wednesday tennis clinic. I stopped by the Canoe Club to see if anyone was there and chatted for a while with George, who was talking to Ben Marcus of Marcus Printing. I told him to say hello to his wife, Ann, who I know through league tennis. We also talked about the crazy good old days at the Transcript-Telegram. I told him the story of how Jon Klarfeld, my BU professor, had sent me there before my masters graduation and how I went to work there and fell in love with a certain person's editing. George thought that was funny and I said that there were actually other things.

Due to playing so much tennis, I felt like I needed a shoulder opener. I left the Canoe Club on time to get to Susie's yoga class at the Hampshire Y and was happy to find out that's just what she was doing.

During another part of the class she said we were going to pair off in threes to work on our down dogs with assists. One person would do the pose while one put a belt around that person's hips and pulled back and the other person kneeled in front to press the down the hands of the person doing the pose.

I thought she read my mind when she said, "Don't freak out if you have arthritis in your hands. You can do a modification."

When she came over to show me how I could do it resting on my forearms (dolphin), I said I thought I was the only one in the class with that problem. My right hand can lie almost flat but my left makes a little claw. Also, I have limited flexibility in my wrists. She said that actually many people have it. The friends who had the same major "issues" as I do are all gone, so I don't know why but I was glad to know there are people who have a similar minor one.

The day before, we only had two for our Tuesday group. So Chris and I played singles. At first my racquet kept thinking I was playing doubles because I hit winners...for a doubles game. I lost 6-2. But then I remembered how to play singles and won 6-2. At 2-2 in the third set (in the heat) we agreed we were tired and would stop. We played one more game and due to a little short slice I won, but we were so evenly matched it was basically a tie.

I was glad to see I could still play singles. When I got home I threw together a snack of whatever was around: watermelon, cottage and a piece of Evelyn's coffee cake. (To be honest, the coffee cake wasn't really around. As tired as I was I went to Breezy Acres before I went home.)

Afterwards, I sat down on the couch next to Maddie, put my hand on her back, and fell asleep sitting up.

Monday, August 8, 2016

The time I went downhill fast and got back up

With Tami & Nancy in 2008
If you are of the opinion "don't go there" by revisiting a terrible experience, then don't read this, but doing it from time to time puts the present in perspective. I went back and found some old posts that contain a lot about crashing blood counts, so here's a warning that it's not a fun read.

But it comes from the perspective of things being good now, nearly eight years after the events chronicled: of George telling me at our tennis lesson yesterday that my balance is better than ever and of me looking at flowers from the garden in a vase on my kitchen table as I write and listening to Maddie snoring after the walk we just took around the lake.

In any case since I was just at Candlewood Lake, I was curious to see what had exactly happened the last time I went. As I found in this post from Nov. 14, 2008, everything was fine and I even went for a little jog. I wrote about how it poured one time but it didn't matter because we were happy just talking, and how the next day it was beautiful and we walked up the hill and talked to the horses. I was still recovering from my third stem cell transplant less than six months before and was not feeling too perky. I wrote that I asked Tami if she felt winded when going up the hill (she said yes) and then I added, "If I feel that I'm more tired than usual, I begin to wonder if I am getting sick in a little or big way."

Emily had to stay in Pittsburgh to work, so it was Tami, Nancy and me. Check out the crazy hair. Coincidentally Ben was in Pittsburgh and stayed with "Auntie Em."

In those days I reported my blood counts all the time. So on Nov. 24 I wrote a post headlined Good news Monday and said that my white count (4.9) and platelets (164) were normal, though my hematocrit (28.4) was slow coming back.

Although looking at it now I see that the white count was at the lowest number for normal. I then tested positive for CMV, a virus that plagued me on and off and against which I'm still on a preventative which I'll stay on as long as I'm on prednisone, which may be for the duration.

Tennis team dinner
I reported having fun at a tennis team dinner shortly afterwards and then wrote about a checkup that occurred approximately six months after that third transplant. I asked my social worker, Mary Lou Hackett, if I could possibly be hit by the same bus twice; I was trying to get encouragement about the fact that my counts had dropped precipitously: white, 1.4; platelets, 27; hematocrit slightly higher at 25.2 than it would have been because I had had a transfusion the week before. She probably knew I was relapsing because couldn't give me an answer. To see how far my numbers were below normal, click here.

On Dec. 25 I wrote that I was devastated to have relapsed again. It was downhill all the way. I was buoyed by all the comments, words of support and encouragement from so many people, telling me I was a fighter, they believed in my tenacity, reminding me to breathe. I have no idea why in 2008 when writing about the vicissitudes of fate I had suicide bombers on my mind, but this is what I said.

I did live to see the day.
One minute the marketplace is full of lively people. The next minute it is devastated, blown up by a suicide bomber. I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon. I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

Everyone's words and Myra's advice helped me get through. And here we are. As my father liked to say, all is well. 🌻🌹🌷🌼

Sunday, August 7, 2016

Revisiting old memories, making new ones

Early morning, Candlewood Lake
I've been getting around.

As previously stated, it sometimes wears on me to go to Dana-Farber so much for what I could call maintenance, but once I get there it is usually fine. Wednesday I drove myself to the Kraft Family Blood Donor Center for ECP because I couldn't handle the things that could go wrong if I tried to coordinate service to Margaret's, where I was staying the night, and then back to Dana-Farber Thursday for a checkup with Melissa. Plus my appointment was at 9, and, judging from a year ago when I had to take The Ride, they might have picked me up at the crack of dawn.

Someone had brought in ice cream and so we had a little party. There were only three patients; a man to my left and a woman to my right. I hadn't met the man and could hardly see him because the equipment was in the way, but when Tina introduced us he called over, "Don't you remember that we already met and I lent you $20?" I said, "No, I lent you $50," and thus we bantered back and forth while the woman on my right smiled and went back to her book.

I told Ellen (the PA) that my abdomen was still extended more than I thought it should be, and she said the skin was soft and that it was not graft vs. host but just my body changing shape. In other words, putting on weight in that area.

The next day, Melissa said that what I am feeling on my abdomen is actually a subcutaneous layer of graft vs. host. Due to that and the still dimpled consistency of the skin on my thighs, I need to keep at it every other week. I had already seen my blood counts the day before because Tina drew my labs before the light treatment. I knew that they were fine. I don't hold my breath any more, but all those times when I did are engraved in my memory.

Friends 4 Ever
After that I drove some three hours to Candlewood Lake to enjoy two perfect days of fun and good food with our high school friend Tami and her sister at the house where we have been going on and off since eighth grade. We took a beautiful three-mile walk through farmland, went down to the lake and read and went for a swim, had cocktails and dinner on the deck, and talked about this and that.

One of the "thats" is the fact that I was relapsing the last two times I was there, in 2007 and again in 2008. I mentioned it when I got there; and maybe thinking about it was the reason I didn't follow my directions at the very end and took a wrong turn and got so discombobulated that Tami finally came out and found me actually heading in the right direction a couple of miles away. Or maybe it is because it is my habit to take a wrong turn because I did it the last time or maybe it's because I've done it before at other times because I get distracted. But to my credit I kept in mind that most accidents happen close to your destination, so I was super careful when turning around a couple of times to get back on track.

I said, "The third time is the charm," meaning I wasn't worried that going there meant relapsing. I did have to point out that it was just about the same weekend in August 2007 when I had played and won with Korby at The Districts in Connecticut, earning me my short-lived bump to 3.5, and had stopped by their lake house and said to Tami's brother, a doctor, that I was waiting results of a bone marrow biopsy after a suspiciously low white blood count. I asked if he thought there was reason to suspect that I was relapsing nearly four years after my autologous stem cell transplant, and of course he couldn't answer, and of course I was.

Anyway...It was hard to leave but I had to take heed of the sign that is among the many interesting things in the house that their father, Sidney Shelov, an architect. designed and had built built in 1957 around an the base of old fishing cabin.

Nell, yesterday
And I was looking forward to my next stop: visiting Ben, Meghan and Nell. After fueling myself with Starbucks and my car with gas, I drove along some pretty roads in Litchfield County for a little more than an hour, with a brief part of the drive on the highway, to have lunch with them at the Harborview Market in the Black Rock area of Bridgeport. It was too hot for poor Nell, whose little face got flushed; we were going to take a walk but went back and played with her a little, where she was much happier in her air-conditioned house. Then we exchanged Meg and Nell for Webster and went back for a walk along the water, where I inhaled the air and wished that I could bottle it along with the view of water and boats.

After the hour and three-quarter drive back and a stop at Jim and Jane's to pick up Maddie, I was tentatively supposed to meet the Pios and their friends in Northampton and go to The New Century Theater. But I was too tired. So I came back home and started to unpack, watered the wilting flowers and pulled some of the rampant weeds, went through mail and started to adjust to reality, which is not so bad either because this morning I had a tennis lesson with George. And I know my dog is happy with her second family but I miss her when I'm away for so long.