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.

Sunday, August 10, 2014

This week in (my) history

A year ago this week, I was pacing around the kitchen where I am now sitting comfortably. I was crying then due to some of the worst pain that I could remember, and considering what I had experienced in the past, that is saying a lot.

It was early afternoon. I had just come home from the hospital after surgery to remove a cancerous lesion on my kidney. I was taking a high dose of the opioid Dilaudid (hydromorphone), alternating with extra strength Tylenol. But it wasn't working, and I was afraid to take more.

I could hardly breathe. I called the office of the urologist who had performed the surgery. A receptionist said she would mark my message URGENT, but when an hour passed and I didn’t hear back, I called Melissa. I was so glad to hear her voice and to know that there was someone who would always call me back when I said it was important. She said it was OK to take more. Someone from the urologist's office finally called back around 5:30 – when it was no help at all.

I thought of this recently in the context of how something bad can sometimes lead to something good. 

The bad was that last May, I was anticipating going to my cousin Nancy's 60th birthday party in California but developed double pneumonia and landed in the hospital on the day that I had expected to fly out of Boston.

During a 10-day hospitalization at Brigham and Women’s, I had a scan to determine the extent of my pneumonia. It showed something that would not have otherwise been found: a small lesion on my kidney.

The attending doctor told me that if this was cancer, it was a miracle on top of the other miracles that had come my way. Finding it this early and by accident meant it could be removed before it had the chance to spread. There is no routine screening for kidney cancer, and it is usually found after the development of full-blown cancer.

At the time, I was not nearly as pleased as my doctors were. My thought bubble would not have read "Yay!" but more likely would have been "WTF?"

Outpatient tests showed that it was indeed cancer. Surgery was set for after I had the chance to recover from the pneumonia.

The surgery took care of it, with no further treatment needed. Now I see that episode in a different light.

My make-up trip to California in September was fabulous. I got to see the America’s Cup and spend more time sightseeing with my cousins than I would have otherwise.

The scar on my right side is now just a section on the road map of the things I have survived.

Sunday, August 3, 2014

Feet firmly planted on the ground

When George tells me during tennis to jump, I am inclined not to ask "how high?" but to say to myself instead "no way."

My theory is that I was given long arms so that I could avoid jumping. Only kidding. Sort of.

I am mentioning this because earlier this week, when I returned to exercise class at the Y, the class started doing double jumping jacks, making me think I might just leave. (I had missed a month of these classes: two weeks for stitches in my right arm and two weeks for stitches in my left.)

But then I told myself: Modify according to your ability. So I took steps instead of jumps, and I warmed up enough so that by the time we jumped rope (minus the rope) I was actually able to get my feet off the ground the tiniest amount.

I am always relieved when we move on to lifting weights, although this is not my favorite thing either. I do it because with five-plus years of prednisone in my system, I feel like it is a health need for me to continue working on my strength since prednisone is known to weaken your muscles.

Also, years ago, even before cancer, my friend Jo, a personal trainer (the same Nurse Jo who removes my stitches), told me that none of us should just run or play tennis: We really need to do strength training also.

I am told by a friend who is into weight-lifting that if you do it enough, it gives you the same endorphins that you get from running, but that requires more commitment than I think I have.

I have also been told I should give Pilates another try. I much prefer yoga for its all-around benefits. Plus I can't take on the expense of another class.

The Pilates class at the Holyoke Y doesn't fit my schedule, but I did notice that the Northampton Y, where you can go with a Holyoke membership, has many more offerings.

In fact, as I am finishing this up at 8:30 in the morning, I should leave in 15 minutes if I am going to get to Sunday morning Pilates in Northampton. Sundays are for the New York Times, two cups of coffee, Meet the Press...

Will I be able to get myself out the door? Now that I have announced the challenge, I will try very hard.

Stay tuned...

Wednesday, July 30, 2014

The benefits of running confirmed

Back when I was getting physical therapy to strengthen my quads – so weakened by prednisone that I was a frequent faller with difficulty supporting myself – I told my physical therapist that my ultimate goal was to return to running.
"Why?" she asked. "Walking is good exercise."
I think if you posed this question to any runner, the answer would be something like, "Because that's what I do." 
When I was bald, I frequently dreamt that I was running effortlessly, my long ponytail bobbing in the wind. These days when I drive along one of my running routes – several with big hills – I remember how I used to run there, and I want to do it again.
Today, my dedication to running was reinforced by a story in the New York Times, headlined Running 5 Minutes a Day Has Long Lasting Benefits.
A large new study, published Monday in The Journal of the American College of Cardiology, found that running for as little as five minutes a day could significantly lower a person’s risk of dying prematurely. The findings suggest that the benefits of even small amounts of vigorous exercise may be much greater than experts had assumed.
In recent years, moderate exercise, such as brisk walking, has been the focus of a great deal of exercise science and most exercise recommendations, but this study says that even a short amount of vigorous exercise is more beneficial.
Timothy Church, a professor at the Pennington Institute who co-authored the study, said there is nothing magical about running per se; running just happens to be the most convenient way for people to exercise intensely.
Interestingly, these benefits were about the same no matter how much or how little people ran, or how fast or how slowly.
I was never very fast – usually about 2/3 of the way into the pack – but since I am now very slow, that is good news for me.

Monday, July 28, 2014

On the other hand...

On the left hand, the spot I had been scrutinizing did indeed turn out to be another squamous cell cancer.

On the left arm, the other spot was squamous cell also.

It had been two weeks since the punch biopsy when my friend Nurse Jo was kind enough to remove my stitches at her dining room table yesterday. If it happens again, she is going to remove them a little earlier than two weeks, because my skin had started to grow over them. As the child in me says: big ouchies.

I thought the dermatologist had forgotten about me, but Dr. Scott – the dermatologist who I now see in addition to Dr. Lin – called shortly afterwards to say she had been on vacation, which was why I was only hearing yesterday. Sorry if this gets confusing; it is definitely difficult to keep all my doctors straight.

The spots are again thankfully in situ – on the skin. They are mostly gone, but one went a little deeper than the she had gotten, and one had spread a little further. So after they heal I will apply a chemotherapy cream called Efudex (fluorouracil). This will turn the areas very red, but then hopefully that will be the end of it.

Sometimes I look at my hands too closely, focusing on what I do not like. I have been told that no one would even notice the blemishes that I see, because no one examines them up close like I do. But this kind of scrutiny bears rewards, because I am the only one who noticed these two problematic areas. I call it my squamous cell radar.

 I'm lucky that they grow slowly, because I feel that Dr. Neel – another one of my many specialists – dismissed the spot on my left arm when I showed it to him after he had performed Mohs surgery on another area. I think he was just ready to move on to the next patient.

He said it was a keratoacanthoma, a skin lesion that may resolve on its own or which may be squamous cell cancer in disguise. When I showed Dr. Scott one like it on my right arm, she said she would remove it and biopsy it just to be careful. When those results came back positive, I called Dr. Scott to be seen for the similar area on my left arm and the one on my left hand.

Scrutinizing my skin sometimes feels like a crazy-making thing to do, but in instances like this it has turned out to be a good thing to do.

Saturday, July 26, 2014

Memorializing a friend

PJ, Adirondack mountains, 2007
The final entries are up on my friend Patricia Jempty's blogs, The Plog and Word in the Woods, with the headline: Jan. 23, 1954-June 28, 2014.

Her husband wrote that she passed away, peacefully, in her sleep, in the early hours of June 28 in hospice in Brooklyn, surrounded by her friends and her family – her husband, Marty, and her children, Mariel, Mark and Harry.

In a post that I wrote two days later, On losing a friend to leukemia, I wrote about how our lives and our battle with leukemia were so similar in many ways; she even called us dopplegangers.

I still expect her to comment on my blog posts. We would each cheer the other up, sympathizing and making light about all the unexpected and often debilitating effects of graft vs. host disease along with Ann, who battles on.

I figure Marty will eventually remove her blogs, but I wanted to keep her on that list. If you are reading this in bloodspot, just look to the right where I have the photos of my children and there you'll see Patricia in a pose that says it all, seeming to lift a heavy rock in the Adirondack Mountains in February, 2007.

She did indeed have a heavy burden on her shoulders, but she carried it with a smile.

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.