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.

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.

Wednesday, July 9, 2014

New tools for dog training

Selfie of my hand
The clicker training with Maddie is going well.

The first time that I went out equipped with a bag of hotdogs, I had a chance to try it on a few dogs. Hot dog, little dog, click, treat. I'm sure I looked and sounded odd, but I think her association is beginning to change because when we were walking Sunday I got ready with my bag of hotdogs, but when the other dog came by and wagged its tail, Maddie wagged back.

I will still have to be on the alert for little dogs who bark like crazy, because dogs will react if they feel threatened. Why do so many little dogs do that?

The other day I was giving a progress report to our veterinarian, Dr. Kenworthy, and I mentioned that one time Maddie pulled me down chasing after a car with a dog in it. She said that was from exuberance, like a dog chasing a squirrel.

I just happened to mention this to a friend who has two big dogs and had bought a leash that is attached to a glove. She had an extra leash in her trunk and gave it to me.

I was using it this morning when Maddie tried to pull me as another dog went by in a car.  With the gentle leader head collar and the new leash it was no problem. I just redirected her head and we went back for breakfast.

Today we met animal behaviorist Kelley Bollen for a walk in Child's Park, and I got a chance to practice when a woman came along with two little white dogs. As soon as Maddie saw them, I clicked and treated, and as they passed near us and I continued to feed her hot dogs, all was quiet.

The only problem is that Maddie is supposed to be on a bit of a diet, and she is going to get fat from all these treats.

Let that ocean breeze blow

I am looking forward to getting out of this swamp tomorrow and going to the Cape, but first I have to get out of here, which will be no small feat.

The people I need to interview for the two stories that Mount Holyoke wants  for a Monday posting are available tomorrow only. The stories are both due tomorrow, and I am due to leave on time to meet Diane in Newton at 6.

Also I am the World's Worst Packer, even if it is only for a short visit. So I better get my act together tonight.

This is all under the shadow of Patricia's death. First and foremost of course I feel terrible about her and for her family. It is not surprising, however, that it makes me worry more about myself, especially in light of the slightly low red count and platelets that I had at my last test.

I am going through one of those phases where pools of blood form under the skin on my arms (the skin is thinned by prednisone), showing up as red blotches. I know what these are, but that doesn't mean I like looking at them. Plus the other night I was holding my face up close to an area on my upper arm where there are a few tiny red pinpricks. I wondered whether they were petechiae, those tiny red dots that signal low platelets. As I used to say to my children for emphasis when they wouldn't stop badgering me, No, no, and no! They were just tiny burst blood vessels.

I will get all this settled when I go for a checkup at Dana-Farber the day after we get back from the Cape. These days I usually breeze in, but a little tinge of anxiety will accompany me. My next visit wasn't supposed to be until August – my big three-month break – but it hasn't turned out that way.

Also on Monday, I am going back to the dermatologist to have her look at the spot on my left arm. I am sure that when I pointed it out to Dr. Neel about a month ago, he said it was nothing. But really I think it is another squamous cell. I have to stop myself from thinking that in the meantime it has turned into something more serious, thoughts fueled by the squamous cell cancer that has spread to Ann's internal organs.

Hopefully the ocean breeze will blow some of these thoughts out of me.

Monday, July 7, 2014

(Don't) cast a spell on me

The other day I got a comment that requires a post all of its own in response to a mention I made about National Infertility Awareness Week:

"Mama Alisha Lura cast a fertility spell for me a few months back and i ask her to recast it a couple of months ago, well today i found out that i am pregnant i couldn’t be happier. i cannot express how wonderful a person she is and i believed without her fertility spell i would have never gotten pregnant."

The reader, "RM," provides a link to the website of Weebly Wizard of the 7th Order, a professional spell caster and High Priestess who says she can cast
love spells, money spells, beauty spells, success spells and custom spells.

The testimonials include:

"Thanks Wizard 7thOrder, your break-up and binding spells work. I don't think of the guys who hurt me anymore and don't meet them anymore.”

"Oh my god!! Wizard 7thOrder thank you so much! My parents are now wealthy and the one who use to bully our family,dont even know where she is when i used your binding and revenge spell at her!"

"thanks for the revenge spell. you are amazing! the girl is already dismissal from our company of her bad behavior."


"Wizard 7thOrder you make life worth living I was so nervous and worried about my lackluster realtionship, your passion and eros spell brought an intense physcial passion and intensity to our relationship that I have never had with any partner."

I don't want anyone to cast a spell on me, thank you very much I have had enough trouble, and therefore I am not going to criticize anyone.

I am just sharing.

Friday, July 4, 2014

Making comments about comments

My blog is among the many that have "comment moderation," meaning that I can see a comment before it goes on.

This is for avoiding spammers or just plain inappropriate comments, for example one time a bunch of us were deluged with comments by a Chinese spammer.

But there are other reasons for choosing not to publish. Often the comment is a means of getting you to click on the link to the name of the person or organization who has posted, in other words it is just a way of getting free advertising.

A while ago someone wrote:

Oh feeling bad to hear that you had such dental issues. But you are a brave person, I am 100% sure that you will win through all of your troubles of life. God bless and happy winning in advance :) on False teeth, here I come

I posted this one because it had come from the Glascow Denture Studio in Scotland, and I did not think that they were trying to lure the mostly-American readers of this blog across the pond to get dentures. I was actually touched that someone other than myself was feeling bad about my teeth.

People who want something usually preface their request with: "I follow your blog and I really find it inspirational.

I bet they say that to all the bloggers.

Readers sometimes want to write a guest post, but there are just too many requests to accommodate, plus a blog like this with a specific point of view isn't the right place them.

At times of a national observance week or month  – such as National Infertility Week in April –  people want to write guest posts on topics such as getting pregnant after cancer. A worthy topic but not relevant to this blog.

Occasionally someone will request to either write a post or have me write about a victim of mesothelioma,  an aggressive cancer related to asbestos exposure. These are sad stories, but like the cancer magazine to which I sometimes contribute, I could not even touch this due to the plethora of mesothelioma lawsuits in progress.

On a lighter note, someone recently wrote asking if I wanted to buy a "Cancer Sucks" T-shirt or other related merchandise. I already have a button to that effect that one of the nurses gave me, and that is all I need, thank you very much.

Wednesday, July 2, 2014

This and that

It's nice to have a nurse friend to save me another trip to the doctor by taking my stitches out.

"Nurse Jo" came over last night and removed the pesky five stitches from my right arm. The last couple of days I left them uncovered and hoped nobody minded because the large bandaid was doing a number on my skin. I was good about not playing tennis except for having to play a makeup match that was only half the time because we got rained out after a set in the first attempt. The stitches stayed in and we won the second set for the match.

Jo is coming back tonight to make sure all the little pieces of the stitches are out because the skin had grown around them.

I'm almost positive that I'll get the left one biopsied when I go back to the dermatologist in a couple of weeks. Both spots are both on the underside of my forearm, making me think I don't do a good job of putting sunscreen on my whole arm.

A group of crazy tennis players went to George's clinic today, and although it was hot it wasn't too bad because the breeze comes off the river. George calls it his air-conditioned court.

When someone hits a cone, the other people are supposed to do pushups according to the number on the cone. When somebody (I can't remember which person) hit cone number 2, I got down and did 2 pushups (with my knees on the ground, which I still think of as "girl's style, although that is kind of silly.) Taking a break under the umbrella, I had some watermelon mixed with grit from the court. Yum.

Today I was working not on slice or spin but on taking big steps. George said it's better for balance, for getting the ball sooner and for looking authoritative. He had me walk around the court swinging my arms and gliding. It makes sense, but it's hard to practice when you're walking a dog.

I asked if it counted that five years ago I couldn't walk at all. That was a joke, really, but I do flash back often to those days when I could hardly walk from my hospital room to the nurses' station. Running after the ball, short steps or long, is a lot more fun.