Monday, March 31, 2014

Writing can be a way of giving back

When the phone rang last week and I checked the caller ID, my heart automatically skipped a beat.

It read 617-632-3000, the Dana-Farber phone number. It was an instinctive nervous reaction because that’s the number that rings when I am waiting for important test results.

It was Melissa Cochran, my nurse practitioner. Only half joking, I asked what was wrong and whether they had dug up something bad from my last test results.

But it was something different. She said the doctors in the hematology program are writing an e-newsletter letting other hospitals and doctors know of their work. It is in conjunction with the marketing department so that doctors elsewhere might refer patients to Dana-Farber. The next installment is on treating a complicated case, and they wanted to write about me. After four bone marrow transplants and a near-death reaction to my last transplant, I would say I qualify as complicated. In addition to a clinical piece that they would write, they wanted to know if I would do a first-person piece on the theme of perseverance.

I have tried to give back to Dana-Farber in whatever ways I can. I participated in a walk to raise money for The Jimmy Fund; I was a virtual walker because I was sick at the time, but the money raised was good anyway. Once I spoke at a Jimmy Fund dinner, which was totally not up my alley due to stage fright, but I did it anyway. I was interviewed on the weei nesn jimmy fund radio-telethon, and, finally, I watched a hole at a Jimmy Fund golf tournament.

(When I was asked to watch a hole, I had no idea what that meant, but it turned out I was there to validate a hole-in-one for which the prize was a car. Mostly I sat under a tree and enjoyed the day.)

Writing the piece was an honor and a challenge. I wrote it once, sent it in, and then changed my mind several times. I wondered if Melissa thought I was crazy, but she was fine with the changes as long as I got it in by last Friday.

In an interesting role reversal, I asked Ben to read the final draft and make suggestions. It doesn’t seem so long ago that I was helping him with school papers.

They are going to send me a link, which I will post here. Part of my theme was the doctors and nurses who helped me through it and also the memory of my father, whose motto was “You have to keep moving,” which I tried to emulate on my roller coaster ride.

I needed to do some research to get the spelling of last names correct. It broke my heart to look up the obituary for my nurse friend Vytas Durickas, who died in 2010f at age 57. Up popped the smiling face that helped me through many difficult spots.

But then it was nice speaking to my tough-love nurse friend Myra Muir. I called her at my old floor, 6A, to get her last name. She asked how the kids are and said to come visit sometime soon. I've gone up there before, and I think they like seeing the transformation from sick patients to healthy people.

Her words of wisdom from five years ago are ingrained in my memory. When I asked her after my second relapse how I could go through it again, she said, "You can have your pity party for a day, and then you'll put your boxing gloves on."

Thursday, March 27, 2014

Bandaids fall off; blueberries roll out

I have spent an inordinate amount of time fussing with the bandaid on my neck.

Not adhesive enough and it falls off. Too adhesive and it irritates my skin.

Actually the burning, stinging and itching made me think it was not healing properly. Because I believe a good night's sleep is all important, last night I took an oxycodone and a Benadryl. This morning, I felt partly comatose, but I woke up enough to go to a good tennis clinic at 1 p.m. George said I am really bending my knees. I said I've been practicing on the dog, getting down at her level instead of bending over to pet her.

I called the surgeon's office to check in about the discomfort on my neck (my wrist is OK), and the nurse said that sometimes the skin in that area gets inflamed by the adhesive. Tomorrow I need to go out and find something called Tefla, which is non-stick gauze.

The two areas need to be covered for at least three weeks. Contrary to the way we usually let a cut heal, these are not supposed to form a scab because they heal from the inside out.

Today, meanwhile, I have had a bad case of butterfingers. I can't blame it on Mohs surgery, that's for sure. This morning I dropped a raw egg on the floor, much to the delight of Maddie, who lapped it up in no time.

This evening, a whole container of blueberries flew out of the refrigerator, with those precious (so expensive!) blues rolling all over the floor. I swept most of them up, but I left a few for Maddie. At least someone will get her antioxidants.

It was a good day to be a dog.

Tuesday, March 25, 2014

Getting back in gear

The spot on my neck was stinging and burning this morning while I was tutoring in Northampton, so I left early and drove down to my doctor's office in Springfield just to make sure it is OK.

I wished I could swivel my head around far enough to see for myself, but alas, biomechanics don't allow for that. I saw Dr. Berger's PA, who said there was definitely a hole but it looked fine. I told her it is bothersome enough that I still need to take oxycodone, but I don't want to sit around the house all day either. I'm just going to have to go out and do things and take something when I get home. She said the magic words – "Go play tennis" – so as soon as I could, I e-mailed the club to sign up for tomorrow morning's round robin.

Yesterday I had put on exercise clothes and vowed to go to the Y. I got as far as the couch. I figured I shouldn't push myself if I wasn't ready. But today my energy level was up. I came home and put on my jogging stuff to walk Maddie. Then I changed from my winter gloves into running gloves, which was supposed to turn me into a runner. It's so much harder to get back into running than it was to get back to tennis. Anyway I retraced my steps in what is probably about a mile and a half distance and "ran" without stopping. The parentheses are because I was so slow I could hardly call it running.

I felt pretty good when I completed my little run, almost good enough to help me get over the shock of Will's death.

Anyone watch "The Good Wife"?

Such a loss!

Saturday, March 22, 2014

A pain in the neck

The healing process after the Mohs procedure in turning out to be a bigger pain in the neck (pun intended) than I had anticipated.

The one on my wrist isn't bothering me, but the one on the back of my neck is. Now it is coming back to me – the last one on the other side of my neck had also hurt because it's hard to keep your head still.

Jo-Ann came over and changed my bandage this morning, and it is the first time I got a look at the one on my wrist. From a tiny little speck before surgery, it has turned into quite the little hole.

I skipped yoga today because I didn't think the twisting and turning would be good, and, big shocker: I canceled tennis for tomorrow. I have been walking Maddie, and she has been mostly good about not pulling – unless she sees another dog that interests her.

Joe is in Fairfield for the weekend, taking care of Webster while Ben and Meg are away, so I have gotten in a couple of errands and trips to the grocery store in between doses of oxycodone when it has worn off. I talked to Melissa about it, and she agreed it was a good idea to take it.

I bought "The Goldfinch" yesterday and was very excited to sit down with my second cup of coffee and dig in to the 771-page book this morning. Normally I like to wait for the paperback, but that isn't coming out for a while, and it's impossible to get from the library.

I didn't get very far, though. The couch looked so inviting that I had to take a nap. For my next activity, I talked on the phone. All things considered, things are not so bad.

Thursday, March 20, 2014

Chip chipping away

I had two squamous cell cancers removed yesterday, one from my right wrist and one from behind my neck.

The one behind my neck was so small that I could barely feel it, but it ended up being the larger incision of the two.

Joe drove me to Boston for a familiar routine: He dropped me off at the office of Dr. Victor Neel, director of dermatologic surgery at Mass General Hospital, who performed the Mohs procedure in which he takes off one layer at a time until the margins are clear.

It's hard to tell someone when to pick you up because you never know when you'll be done. But thank goodness for cell phones because I texted Joe with progress updates. It wasn't too bad, but it still took up a chunk of time because I had to wait for Dr. Neel to examine the first specimens under a microscope and then sit for him to take another cut out of each, and then sit again until he came back with the news that I was done.

The nurse told me that sometimes it can take up to four or even more passes. It's really an impressive operation (I didn't mean the pun, but it came out that way.) Five patients get situated in different rooms, and the doctor goes back and forth between all of the patients at various stages of their progress. It's no wonder that he's so thin, given the way he dashes around. He was very pleasant, chatting about this and that and checking in to make sure he wasn't hurting me.

It was fun talking to Joe on the way back and forth. One of the best times to talk to your children – even grown up ones – is riding in the car. In between dozing on and off, I heard the latest from WEEI sports radio, including the trade rumors about DeSean Jackson and speculation that he might go with the Patriots.

I was so tired when I got home that I could barely keep my eyes open. We got a pizza because it was late, and I almost fell asleep in between bites. I could have gone to bed at 8, but I stayed up a little later because I didn't want to wake up in the middle of the night. As it was, I woke up at about 4 a.m. with both of the spots stinging and burning. I took some oxycodone, which got me through the morning, but around noon it started up again. In my experience, it usually takes a few days for it to calm down. Meanwhile, I'm going to reach out to one of my nurse friends to change the bandage on the back of my neck in a few days.

I'm not supposed to walk Maddie because the spot on my wrist might bleed if she pulls me. It's a good thing that Mary Margaret is coming over later for a play date, and also that Deborah is going to bring strawberry shortcake.

Monday, March 17, 2014

Dental bridge looms in the not-too-distant future

Looking up the cost of a dental bridge.

My heart is sinking.

To chew, or not to chew?

To smile, or not to smile?

This is all very vexing.

Sunday, March 16, 2014

Sidelined only some of the time

I have been thinking about the fast-approaching Saint Patrick's Road Race, about how I would like to be in the stage of anticipation that comes with being a participant instead of regretting not doing it.

But with everything going well in the health and fitness arena, it is not a major regret. Still, last night I dreamt that I began to cry while sitting on the sidelines watching the runners line up at the start. If I could tell my subconscious to get a grip I would do it, but I know psychology does not work that way. With a whole mile under my belt, I can start to work towards next year if it ever gets nice to run more. (The "dreadmill" is not an alternative.)

I played two hours of good, fun tennis at Friday night's mixer in Enfield, with pizza afterwards. When I got home a little after 10, I had a one of Deborah's delicious cupcakes with vanilla ice cream and then watched a couple of episodes of "The Office." Pure indulgence. I woke up the next morning feeling fine, a sign that I have a pretty sturdy constitution. Still, the eating part is probably not something I should do all the time.

Yesterday morning I adjusted a pose in yoga that resembled tweaking a tennis shot. I had been having trouble getting up from cobra into downward facing dog, interrupting the flow by resting my left forearm on the mat instead of placing both palms down. I thought my left arm wasn't strong enough to bear the weight. But our instructor, Justine, said that I was relying on my arms instead of my core, and that I should start by pushing back as though into child's pose and from there up to dog.

It worked. Back at home, I have been getting down on the floor and practicing. Maddie comes over and acts as though she thinks this is an odd. Perhaps she believes she is the only one in the house who can do dog.

Thursday, March 13, 2014

A day at the vet

I am not the only one in the family with dental issues.

The vet told me last week that Maddie needed her teeth cleaned or else all sorts of terrible things would happen. I said I never had a dog's teeth cleaned, but she said it is really the thing to do, so I went along with the plan.

The procedure was performed today under general anesthesia. This morning Maddie could not understand why I didn't feed her. She kept looking at the barrel where her food is, and then at me. When we got to Valley Vet, she "asked" the tech for a treat, but alas, she had no luck there either.

The poor thing's eyes were bloodshot when I picked her up at the end of the day. She sat while I paid the bill…and turned her back on me. She wouldn't turn around for me or for the vet tech, a sure sign that she was angry.

Now she is asleep on her spot on the couch. First she sat surveying the situation, and I wasn't sure she could make it. I will have to spot her when she gets down.

At least she didn't need any teeth pulled.

Wednesday, March 12, 2014

Comments about cancer can be weird

Sometimes people mean well when they learn about my cancer history, but still, they can say the darndest things.

There's no reason to bring it up to most people, but sometimes it just happens. I was subbing in a doubles game last week and didn't really know the people. We got to talking afterwards and I said I was on my way to have a tooth pulled, and the reason for the tooth's bad shape was the prednisone, and the prednisone was from Graft vs. Host Disease, which was from the transplant, which was because I had leukemia. Long story as short as I could make it.

Today I played in a round robin with one of the guys from that group, who is a fine fellow (and a good player) but kind of an odd duck. He said he had been thinking about me, and I thought that was nice, and then he said he wanted to talk to me about screen savers. He asked if I had a 15-inch screen because he knew of places on the Internet to get beautiful screen savers.

This was before we played. Afterwards he said, "When you've faced the grim reaper, you could use some beautiful pictures to look at."

I said I was happy with the photo that I took of the beach at Wellfleet. He kept talking about calming pictures of waterfalls. I said really, I was all set.

He seemed taken aback, but then so was I.

Sunday, March 9, 2014

Dreams of running and other stuff

In my recurring dream, I am running effortlessly.

I had this dream the other night, and it was my motivation for giving it a try yesterday. The temperature was in the low 50s, and I was nice and stretched out after a good yoga class when, for the first time, I didn't need to use the wall.

So I set out on my beginner's run from my house to the lower lake and back, a little over a mile. It was far from effortless, but I did it without tripping and only walked up the last little hill, which is a big hill if you are starting over again.

The question did run through my mind, "Why are you doing this"? I read somewhere that the best compliment to give a runner is to say he or she is crazy. Sometimes this refers to running ultra long distances or running in horrible weather, but in my case at this point it refers to starting up again when there really is no need, because I still feel like a runner and that's what runners do.

If you have a favorite pair of earrings, you will understand this part. I had slept in my little blue sapphire earrings, and when I woke up, I only had one in. I had already lost one of these and had gotten a replacement from the jewelry store in Newton where I had bought them. At first I couldn't find it in the sheets, but…success!…there it was. I never found the earring back, and you might know that these disappear like socks, but I did find one in my jewelry box. I put two little plastic thingies on the backs so they will stay in place.

I gave Maddie her morning hug, and, honest honest, she gave me a nice smile in return.

Saturday, March 8, 2014

The other shoe drops

I was pleasantly surprised yesterday when I did not have any pain in my mouth. I was, however, exhausted and took two naps, although I did manage to get in a dog walk.

The other shoe dropped this morning when I woke up at about 6 a.m. with a throbbing pain where the tooth was. I took some oxycodone and tried to go back to sleep, but Maddie put her face on the edge of my bed and won the staredown. When the pill wears off later, I will try to see if I can get on with the things I have planned.

In the "there's always something department," I got the results from the biopsy Dr. Lin did of a spot on the back of my neck. It is another squamous cell "in situ," meaning it is on the surface and in the early stages. Did I say something about not going back to Boston until May? Well, cancel that. I'll have to go back in a couple of weeks to have that spot surgically removed as well as another one on my wrist.

When I called Dr. Neel's office to make an appointment for the Mohs procedure, the nurse said they would get me in quickly because I am considered high risk. Nice to get in quickly, especially considering how in my old life I sometimes had to wait months to get a dermatology appointment, but a little jarring to be called high risk, even though I know that's what I am.

But the sun is shining, the coffee is good, and the temperature has climbed out of the single digits.

Thursday, March 6, 2014

Relapse nightmares haunting

I had the scariest nightmare last night, a nightmare that shows you never really feel safe.

It was about the tooth I was having extracted. In the dream I was getting the tooth pulled at Dana-Farber, while in real life the dentist is right down the road from me. In the dream, the dentist looked at me and said I had two big bruises on my arm and I would need to check in with my doctor about that sign of low platelets. I said my blood had just been checked, but she said I obviously needed to get it checked again because I might be relapsing. No one was available, so I had to go back home and would then have to go back at such time as I could make an appointment.

I was relieved to wake up and get my bearings. I did check for black and blue marks and saw some on my left shin. These come not from low platelets but from hitting myself on the leg with my tennis racquet. It was a good morning, all in all. For once, I cut into a cantaloupe at just the right time. Then I played a good doubles game.

My friend Chip took me to the surgeon to get the tooth pulled. I told the surgeon that I had lost track of how many teeth I am missing now. He counted up the spaces and said it was ten! I think I am beating my friend PJ on that count.

I didn't take an Ativan as I had in the past because I thought that with half of the tooth already having cracked and fallen out, it wouldn't be such a big deal. The surgeon said that would actually make it harder because there wouldn't be so much to grab onto and he might have to dig around in my gum. I said I was leaving to get some Ativan after all. No such luck, of course, but the worst part was actually getting the novocaine. The tooth came out pretty easily.

In six weeks I can get a bridge on the left side where the tooth was pulled. Since I can't chew on that side now and haven't been able to chew on the right side for some time, I am afraid I am looking at a period of mush and smoothies unless I chew with my front teeth like a rabbit.

I am writing this as the novocaine is wearing off, and I am not a happy camper. I am hitting the oxycodone and the couch.

Wednesday, March 5, 2014

Support for blood cancer survivors

Support groups for survivors of blood cancers are usually connected to major cancer centers which are not that easily accessible to people in places like Western Massachusetts, but Dr. Jay Burton of Springfield Medical Associates hopes to remedy that by starting a group in Agawam.

He spoke last night at St. John's Church Parish Center at a dinner sponsored by the Leukemia and Lymphoma Society. When I got the invitation via e-mail I didn't expect many people to be there. I was totally surprised to see a parking lot full of cars, and, inside, some 200 people, a combination of survivors, new patients, friends and family and other interested people.

I'm not sure if I would have joined a support group early on, but if I had wanted to, there wouldn't have been any available around here. There are breast cancer support groups and general cancer groups, but nothing specific to people fighting blood cancers. The only people who are on the same page as me when it comes to post-transplant issues are the friends I have met through the blogosphere, PJ and Anne. I know PJ in real life now too because we both went to Dana-Farber and both live in the Northeast, but it would be helpful to meet other people dealing with Graft vs. Host Disease.

I am blessed to have a large and wonderful support system, but really, how many people want to sit around and compare notes about lost teeth, tingling feet, messed up skin, side effects of prednisone, numbers of falls,  etc.?

Chances are I'd be able to help some newbies out, also.

I'm looking forward to attending the first support group meeting, which is scheduled for April 24 at the church in Agawam.

Monday, March 3, 2014

Creating a happy and productive workplace

I am really glad that I don't do my writing in a place where I am tied to my desk.

My workplace is my home, where I am my own boss and have the flexibility to get the most out of myself with the proper "incentives."

This morning when I was writing my Newsmax post, my eyes could not focus. The continued dry heat in my house was getting to me. Another cup of coffee would not do it, but a quick trip to Tailgate Picnic would. I think I just needed some air. I got a raisin scone and told Anna at the cash register that I was betting that magic elements in the scone would help me write.

It worked. I breezed through the Newsmax post (with help from an extra cup of coffee) and finished editing a piece that I am doing for another client.

Back in my early days at The Republican, the atmosphere allowed for taking revitalizing breaks. When there was actually a downtown in Springfield, I might walk alone or with a co-worker down to the bookstore. Later there was only the Dunkin' Donuts next door, but even a coffee run could do the trick.

Increasingly, the atmosphere there became one of watching everything you do, with time spent recharging viewed as time wasted. I am sure this attitude permeates other workplaces as well.

In another life I am going to work at Google, where, according to the company' website, "Our offices and cafes are designed to encourage interactions between Googlers within and across teams, and to spark conversation about work as well as play."

Its goal in offices and campuses is “to create the happiest, most productive workplace in the world.”

I am doing my best to create my own happy workplace. I am going to walk the dog now and when I come back, I will write the other story on my budget today, a faculty profile for Holyoke Community College's next Career Focus issue.

And if I need another scone, I just might get it.