Friday, October 31, 2014

A bad sunburn, minus the sun

Yesterday's PDT wasn't as bad as the one the previous year, and in fact each one gets easier. Dr. Lin said that is because my skin is looking better and there are fewer areas to treat, which doesn't quite make sense to me because the blue light is directed at your entire face.

In any case, my memory had deceived me, because I wrote in my last post that I thought it was only five minutes (I corrected it) but it was actually 15 and so I wasn't entirely mentally prepared.

Although the time under the lights was easier, my face felt like it was on fire afterwards. Comfort food made by Margaret – shepherd's pie – and one of my little pills took the edge off. While we sat on the kitchen floor with her dogs, Margaret humored me by letting me show her third installment in the Marcel the Shell series, introduced to me by Joe and Katie.

Margaret giggled. I giggled. I do it every time. It can only help. I know I am not alone because as of this minute, it was viewed 2,433,667 times. So here it is, Marcel the Shell with Shoes on, Three.

On a more serious note, it was an incredible day to be in Boston on the day the city's beloved and longest-serving mayor, Tom Menino, died. There was such an outpouring of love, everywhere you looked and listened, even on the Pike, where signs at the eastern end read, "Thank you, Mayor Menino."

Naturally I couldn't take anything for my burning face while I was driving. I made it home, ran some errands and got Maddie from "Aunt Jane" and "Uncle Jim," who now take the same kind of good care of Maddie as Jane did when babysitting my children.

I wanted to see if I could do without another pill, but when I noticed that I was all clenched up in pain I decided that it was time. For Halloween I am playing the role of someone who fell asleep while lying in the sun on a very hot day. Luckily, although the treatment was not fun like a day at the beach, it should have the opposite effect – preventing skin cancer instead of creating it.

Wednesday, October 29, 2014

Specially seasoned, cooked well done

Sometimes it helps me to give funny or offbeat names to the things they do to me – never to the really serious things, of course – but more to procedures at the maintenance level.

For example, I call therapeutic phlebotomy "blood letting," which is what happens when I go every other month to have about a pint of blood removed to reduce the iron overload that resulted from multiple transfusions.

The name game has come to mind because tomorrow I go to Boston for my annual face fry.

The term is actually photodynamic therapy, or PDT, and my dermatologist uses it to treat my face for spots that might turn into cancer. It is definitely better than getting more skin cancers, and by the way  I think I have another squamous cell, this one on the side of my hand, so I will be surprised if she does not biopsy it.

Marinating last year
Here is how the American Cancer Society describes PDT when used to kill cancer cells:

Photodynamic therapy or PDT is a treatment that uses special drugs, called photosensitizing agents, along with light to kill cancer cells. The drugs only work after they have been activated or “turned on” by certain kinds of light. PDT may also be called photoradiation therapyphototherapy, or photochemotherapy.
Depending on the part of the body being treated, the photosensitizing agent is either put into the bloodstream through a vein or put on the skin. Over a certain amount of time the drug is absorbed by the cancer cells. Then light is applied to the area to be treated. The light causes the drug to react with oxygen, which forms a chemical that kills the cells. PDT might also help by destroying the blood vessels that feed the cancer cells and by alerting the immune system to attack the cancer.
The period of time between when the drug is given and when the light is applied is called the drug-to-light interval.

After a nurse covers my face with the chemical, I sit for about an hour and a half, reading a little through the slits in the foil that covers my face. Then the covering comes off and you sit under the light. That part takes 15 minutes and hurts more than the worst sunburn you can imagine. Moving a cold air blower around with your hand helps somewhat in each area that you target.

She is also going to do my lips, woo hoo!

Afterwards your skin is red, blotchy and painful. You're supposed to avoid the sun, so this is a good time of year to do it.

In the past I have had to take something for the pain, but I'll see how I feel. I'll be going to Margaret's afterwards, and maybe the good company and good food will take my mind off of it.

 I'll drive back Friday morning, well done.

Saturday, October 25, 2014

Testing and talking, talking and testing

I was injected with radioactive stuff (like that medical term?) at 10 a.m. yesterday and spent the time until 1:30 at the Dam Cafe, where my friend John Stifler, who teaches at UMass, was nice enough to meet me.

We were due for catching up, and he was impressed by this Northampton-like place in Holyoke.

When I went back for the bone scan, the technician said it was routine to do the whole body for a baseline. I said to go ahead but I was afraid, given my history of surprises, that some unexpected places would light up. I don't think they did or else I would have heard about it, but when he did my feet I saw an area on my left foot light up. I'll get the results on Monday.

There is really no such thing as a person being too nice, but I have to say that the technician gave me a headache, talking loudly and nonstop. He told me he is so hyper he doesn't ever need to drink coffee, and it showed. My only escape was when I went into the machine for my body to be scanned and was able to take a quick nap. I like to chat with people who perform these tests, but there are limits.

The test was in Holyoke Medical Center, where I couldn't help but think of Kevin O'Hare, who was public relations director there and music critic for the Republican and also a talented musician in his own right.

He was so much fun to sit across from at the paper, always so cheerful, coming in with a smile. And when I would call the hospital to see if he could find an expert for me to interview, he never failed to thank me for thinking of the hospital (because many times reporters called the larger Baystate Medical Center).

Gone two years ago at 55, a big loss, the best kind of nice.

Thursday, October 23, 2014

Something to whine about

I thought I did something to my toe when playing tennis on the hard courts last week, but when the pain migrated to the top of my foot, I realized it was more than that.

My podiatrist had a cancellation yesterday morning, so I went bright and early. He said it is most likely a stress fracture in the left metatarsal.

He gave me a compression boot and, like the last time I had one for a stress fracture in my leg, it worked quickly to ameliorate the pain. To confirm the cause, I need to go to the hospital tomorrow for an injection of dye, followed three hours later by an x-ray and bone scan.

I will probably have to leave the boot on for five to six weeks, which obviously amounts to that same amount of time without exercise. I asked about swimming, and my doctor said not even to do that because of the pressure it would put on my foot. I can basically lift weights and do some core-strengthening exercises, not my favorite activities.

Katie asked me what makes a stress fracture heal, and I said basically wearing the boot and whining.

When I told Diane about it, she said a friend had recently reported suffering from plantar fasciitis, and Diane, a fellow past sufferer, told her all the remedies we had tried. We laughed about the fact that I complained more bitterly about plantar fasciitis than I did about leukemia. A stress fracture can have the same effect.

It is already taking its toll on Maddie. She keeps looking at me expectantly, as though she thinks we're going for a walk. But it's hard to navigate with the boot on.

I have already planned a few play dates for her.

At least one of us will get some exercise.

Monday, October 20, 2014

Three days: tales of my toe and other stories

Saturday: I dreamt that my father had come back and was looking great. He was jumping around, and my mother and I told him to calm down because this was his second chance and he didn't want to get sick and die again.

Sunday: I dreamt that my mother came back and looked beautiful with her dark shiny hair that she was about to put in rollers. We were getting ready to go out, and I asked if I could share her bathroom mirror to put on my makeup because it was better than the mirror in our bathroom. (True, it really was.) Plus, the bathroom that I shared with Diane was filled with towels, and somebody needed to do a wash.

Sometimes when they come back I am comforted, but other times like this I wake up so sad that they are not really back after all.

Today: Dream sadness on top of piercing big toe pain. Close to tears. It hurts so much I can barely walk. Last night, rather than sit in pain, I took an oxycodone. I am not supposed to take ibuprofen or any other anti-inflammatories because they thin your blood. I am not supposed to take Tylenol because it is not good for my liver. I know exactly why I never got addicted to "oxy" even though yes, it does make you feel good briefly. I wake up with a headache and take the Tylenol anyway.

I went to Esselon early to finish writing something and also, true confessions, to have a raspberry oatmeal muffin. I called my podiatrist from outside the door because his office hadn't opened when I left.  (Yes, I have a podiatrist in addition to all the other doctors I see. I went to him years ago for a surgical procedure on an ingrown toenail, shown smiling through the pain in photo at right, recovering from the procedure.)

The first appointment was not until Nov. 17. I said I was really nervous about having an untreated possible infection due to my history, and the receptionist said OK, Thursday then.

A man who overheard this conversation said he had channeled his guru, who left his physical body in 1967 but whose spirit was telling my new "friend" to advise me to go to the nearby Cooley Dickinson clinic on University Drive. He wrote out the directions word by word and then listed five podiatrists who might be able to see me the same day if the clinic doctor intervened.

I decided to soak in Epsom salts tonight instead and call my own podiatrist the next few days to see if there are cancellations.

Next stop was the Jones Library to get a book that we are reading for book club: "Empty Mansions: The Mysterious Life of Huguette Clark."  It was on the lower level on the lowest shelf. I got down on the floor to get the book and was pleased to be able to get into a lunge position and get up from there with no problem. (It's the little things.)

I had seen a sign saying Kindles were available to borrow, so I stopped at the reference desk, where a nice librarian showed me how to use one. I am going to read BJ Novak's short stories just for fun. Believe it or not, it was the first time I ever even touched a Kindle.

The librarian said he had just read in a journal that people absorb way more reading print than on a screen. Like I said, I am going to try the Kindle, but I am not going to get one,  just maybe take one out again the next time I fly.

Saturday, October 18, 2014

Annoying little problem

While singing the praises of outdoor tennis yesterday, I forgot to mention that gnats, or some such little thing, were congregating around my face, biting my forehead and every part of my eyes that they could get to.

I kept rubbing my eye, which is the only reason I can think of for the subconjunctival-hemorrhage that the doctor who was kind enough to see me yesterday diagnosed. That sounds more scary than what it actually is: a broken blood vessel in my right eye.

I noticed Thursday night that it did indeed look like a broken blood vessel. When I woke up yesterday, my whole eye was red, leading me to suspect pink eye, although I couldn't think of any place I might have caught it.

My eye stings and burns and would look good for Halloween. But it won't last that long. It should resolve by itself in a few days as long as I don't rub it anymore.

Friday, October 17, 2014

Tennis in the rain, what a glorious feeling

Yesterday might have been the last day for playing outside at the Holyoke Canoe Club, and we came out in full force, eight of us and then six die-hards who played even after it started raining.

We were playing George's made-up game of triples, three against three, which I initially didn't like but which I now understand is good for your doubles game because the balls keep coming, quickly and from unexpected places.

It is a perfect place for tennis: clay courts nestled in the woods, the river nearby, and George's "air-conditioned" court – the one closest to the river – for catching a breeze on hot days. Also, non-competitive, easy on your legs, everyone joking and having fun, complimenting each other, always learning something, sharing a watermelon and exchanging stories-of-the-week during breaks.

So it is hard to say good-bye for the season. We played on for maybe 15 minutes, until the rain that began as a drizzle really started coming down.

Playing tennis in the rain, and also running in the rain, makes you feel like a little kid. Silly, and without any concern except to hold on to your racquet in tennis and navigate the puddles while running.

Yesterday was warm, but next week's forecast calls for rain and cold.

It had to end sometime, but before you know it, George will be talking about putting the courts back together.

You could sing my headline to this song:

Tuesday, October 14, 2014

Fun in Minneapolis

We covered a lot of ground over the weekend: walking around (part of) a lake or two, walking along
the Mississippi, eating out, visiting Dinkytown (yes, the area around the University of Minneapolis is
really called that), drinking coffee (me) and tea (Katie) at Caribou coffee and other great spots in sections of Minneapolis that resembled Northampton on a larger scale.

View of the Mississippi from our walk.
We also went to the Gutrhie Theater, almost missing the play ("The Heidi Chronicles") due to getting stuck in traffic during the Zombie Pub Crawl , which, according to the St. Paul Pioneer Press, broke a world record with at least 15,458 people dressed as the undead gathering in one place, an accomplishment entered in the Guinness Book of World Records. What can I say? I never knew I would go to Minneapolis and run into that.

Best of all, of course, was just spending time with Katie.

My home-away-from-home for three nights was another great find on Airbnb (the first one being the bed and breakfast in Seville). It was exactly 1.3 miles from Katie, a hop, skip and a jump, with "my lake" (Lake Harriet) close to me, and Katie's lake
(Lake Calhoun) a short drive from her.

Nice day at Lake Harriet
It is more expensive to fly from Hartford, so I flew from Logan, where Diane was kind enough to pick me up last night. I spent the night in Newton and then drove straight to Northampton this morning so I could get to at least part of class at the Literacy Project. Then, coffee with a friend; then, stopping at Atkins; then, picking up Maddie, then, taking her for a mini-walk...and then, wondering if I should clean out the car and unpack my bag, but saying, "I'll think about that tomorrow."

Saturday, October 11, 2014

Hello from Minneapolis

I took my mother with me on the plane to Minneapolis, and now I feel that she is keeping me company while Katie attends a program required by Teach for America.

Well, first of all, I am not saying that I actually took her. I took a framed painting – a "Lynne Gordon original" – that Katie wanted for her new apartment. The still life watercolor is an early piece signed  Lynne Lewin in her perfect handwriting.

I was thinking of going to Staples to get packing materials when it occurred to me that I could just wrap it in newspaper, put it in a bag and take it with me as a carry on. First I read the newspaper and then I wrapped the picture in it, proving that the paper is not just good for "fish wrap." I liked the idea of wrapping it in her beloved New York Times.

I prepaid the $20 required to check my bag, but on the way back I can just carry it on.

There were some adorable babies on the plane yesterday, making me even more anxious to see my own, who I can't believe is 22. She is doing well in the first year of her Teach For America stint teaching ESL in an elementary school here.

It incredibly nice here with a lot of cool things to do and see including a lake near her house and another near where I am staying (just 1.3 miles from her, another winner found through airbnb).

I had looked up a restaurant where I could have lunch but ended up at a different place that looked inviting. It is called French Meadow Bakery and Cafe, and its owner is......drum roll....Lynn Gordon.

On the wall there is a framed newspaper story about her, headlined "Risen Star Lynn Gordon."

How cool is that?

We are going to walk around Lake Harriet and then have dinner and go to see "The Heidi Chronicles" at the Guthrie Theater. Fun!

Wednesday, October 8, 2014

Stitch free ... if only for now

Crazy but good morning yesterday.

"Nurse Jo" came over to remove my stitches, coffee cup in hand.

I needed to take the coffee cup from her because Watchdog Maddie ran over with a toy and was jumping all around her. I stuck out my arm for the third consecutive removal of stitches in basically the same place, right above the crook of my arm, which is odd because that area does not get much sun.

It has gotten to be a routine, easier than last time because I also had them on the back of my hand.

I finished the story I was writing for HCC, got in the car and got stuck in traffic on my way to the Literacy Project. There seems to be construction everywhere.

With three volunteers, there was time for one-on-one. I worked with a woman from Ecuador who was just learning to read and write in English. She struggled over the word "though." I kept saying it and she didn't understand. She thought I was starting the word with a "D" as in "dough."

 She asked if I was from Massachusetts and I said originally from New York, and she said she thought that was it. Do I really have a New York accent? I always say that the accents are from the Bronx and Brooklyn, not from Manhattan, but maybe there is a tinge and if that is so, I am proud of it. Once a New Yorker, always a New Yorker.

My travels usually take me in that direction, but on Friday I am heading WEST, to Minneapolis to visit Katie. I am very excited because I miss her very much and am so used to having her in Boston, which I basically consider to be our backyard.

More on that later because I thought it would rain and there would be no tennis at the Canoe Club, but the sun has come out and that will be a good start to the day since I have taken a break due to stitches and travels.

Sunday, October 5, 2014

Getting back on the bike

I must admit I'm envious of the trip to Greece that a group of tennis friends are taking (and posting about on Facebook), but it's pretty nice here in Western Massachusetts too.

The  picture-perfect fall day is especially welcome following yesterday's rain. I am slowly and cautiously getting back to bike riding after the two-year break I took after my accident. Today was a good day for it.

I am able to get my new, lighter step-over bike into the back of my car, which I did this morning. Starting at Damon Road in Hadley, I rode for about an hour and a half, with a little time to stop and enjoy the scenery.

Since it is flat, it is easy riding and a good place to practice stopping and starting at the intersections.  After I got the new bike, I started with a little spin and gradually increased a little bit at a time, the same as I did when returning to running. Today was the first day I actually enjoyed myself as opposed to watching myself.

It doesn't provide the same exercise for me as running, but it is good to relearn the basics in case I ever want to take a harder ride.

My legs felt a little funny, but it was so nice outside that afterwards, I walked Maddie around the lake.

Saturday, October 4, 2014

Needles: the good kind

I had almost forgotten that I had signed up for free acupuncture through the Cancer Connection in Northampton, so I was surprised when the phone rang and it was acupuncturist Laurel Turk saying I had come to the top of the list.

Since the only time that she does this in Northampton is the same day I volunteer at the Literacy Project, I went to her office in Sunderland earlier this week. There was therapeutic value just in driving along beautiful Route 47 just as the leaves were beginning to turn.

 I previously had acupuncture done at Dana-Farber's Zakim Center for Integrative Therapies  and also in Amherst by a woman who is also an herbalist. The session at the Zakim Center was definitely calming, causing me to immediately fall asleep. Same thing for the sessions in Amherst. These were  complemented with Chinese herbal medicine to balance and strengthen my system after my first bone marrow transplant.

I took home a bag full of raw herbs that I boiled in my spaghetti pot and drank like a tea. It tasted and smelled horrible. The whole house stunk. My kids said it looked like the acupuncturist had just gone out behind her house and collected pieces of bark, and they would kill me if I did not stop. I am not doubting Chinese medicine, but it was not my cup of tea at that time.

At the session last week, I said I primarily wanted to address the neuropathy in my feet. I would love to get off that drug Neurontin, with its side effects of dizziness and drowsiness. There are many other imbalances in my body to address, including the graft vs. host in my liver and the tendency of squamous cell cancers to pop up on my skin.

My feet were the only place the needles hurt. The rest went in easily, including a couple in my head to calm my runaway mind. She also used a moxa stick, in which dried leaves of the Chinese herb mugwart are lit and applied to the needles, intensifying their benefits.

With each needle, I felt more and more like I was in a warm bath.

It was so much better than the needles that usually poke me.

I am happy to say I get five more sessions. Thank goodness for places like the Cancer Connection that offer services not just to those in crisis but also to those dealing with the long-term effects of cancer treatment.