Wednesday, October 30, 2013

Day of the Dead

Catrinas, figures in Day of the
Dead celebrations in Mexico.
My volunteer job as a classroom assistant at the Literacy Project in Northampton is turning into a two-way experience.

Yesterday, I learned about the Day of the Dead from two students I was tutoring.

It's rewarding to be both a teacher and a learner. Here's how it happened: Four students and I were doing a section on storytelling.

I went over the definitions for words that would appear in a little piece about storytelling that they would read to themselves. After that they did exercises such as fill-in-the-blanks and a crossword puzzle. Lastly, the instructions called for them to write a story.

Two men from Mexico wrote similar stories about the Day of the Dead, which I learned is a primarily Mexican holiday in which families build an altar and leave food, drinks and other offerings to their deceased family members. If they don't do it, the dead will cause trouble.

I asked one of the men for the Spanish words – Dia de Muertos – and then asked him to repeat it for me until I said it right. I liked the fact that he was teaching me and I was teaching him.

This is a great volunteer opportunity because the students really want to be there. Plus afterwards, I went to the Don't Eat Lunch Alone networking event at Packards and talked to some interesting people.

Monday, October 28, 2013

A day of work and play

One of the benefits of being a freelance writer is that you can wander around after an interview rather than rushing back to the office. Of course one of the drawbacks is not collecting a regular paycheck, but you definitely get to stop and smell the roses.

There were roses and more when I walked along the Bridge of Flowers in Shelburne Falls today. The flowers are mostly past their bloom, but the bridge was still beautiful on a crisp, clear day. I went there after doing an interview nearby for a Yankee Magazine piece that I had pitched. More details on that later.

I got a sandwich at McCuster's Market and then stopped at Shelburne Falls Coffee Roasters for a coffee to go. I was so tired from having stayed up late watching the Red Sox game that I had to take 40 winks in the parking lot. It is one of my excellent skills that I can park and sleep for just about 10 minutes.

Maddie got a good walk when I got home and then fell asleep with her head on my lap while I logged in another night with ice cream and the Red Sox.

Sunday, October 27, 2013

Weekend update

Well, the most exhausting thing I did all weekend was watch two nights of the World Series.

It's a good thing that I had energy food in Evelyn's chocolate chip cookies.

I basically managed to keep out of trouble by walking (not running) around the lake, going to yoga, playing tennis and going to the gym, where I rode a bike (boooooring) and lifted some weights.

Lest anyone think that all I do is exercise, also had coffee with friends and got a lot of other things done. I wrote my weekly blog post Surviving Cancer for Newsmax Health and did my homework for something new – serving as a volunteer tutor with the Literacy Project, which offers free classes to adults. I need to take an on-line class in teaching reading to adults, and after just a few installments I have already learned that teaching reading and writing is much more complex than just picking up a book.

Since my fall on Thursday, I have had an on again, off again headache. I basically feel fine, but I think I should call the doctor tomorrow if it is not resolved.

But hey, how about them Red Sox?

Friday, October 25, 2013

Time to get a grip

I wasn't going to write this one because I am embarrassed, but in the interest of being honest, here I go.

I have kept my promise to keep from jogging around the upper lake, where the roots and stones are now hidden under fallen leaves. I have actually successfully jogged around the paved lower lake, and I should just leave it at that if I feel the need to run at all. Runners know that it is very hard to give it up.

Yesterday I was walking Maddie around the upper lake, and when I saw a straight-away I just picked up the pace and jogged for less than a minute between two trees. In the second that it took for me to say to myself, "I really shouldn't do this," I fell hard. I hit my head, and my glasses went flying.

I got up and walked slowly home, feeling the bump rising on my cheekbone. I took out some ice and lay down upstairs on my bed. I think that by going up there I was hiding from Joe, who was due home soon.

It really amounts to hiding from myself. Even though I have been an amateur athlete, I am like any athlete who just can't come to grips with the limitations that come with age, and, in my case, of course, with all the things that I have been through. It also comes down to impulse control.

When Joe came home he saw the now black-and-blue area on my face and asked what happened. He could see that I was really upset and gave me a hug. We talked it through, going back over my falls and how close I have come to severe injury, notably the time I fell off my bike and came horribly close to getting run over. He said that in addition to avoiding the obvious, I have to in general pick up my feet. "You walk like your father," he said.

Notwithstanding the effects of age and illness, I have always been a little oblivious. We talked about the time when the kids were little and we were visiting my parents at Atlantic Beach. I went for a jog while they went down to the beach. Happily running along, I tripped on a loose piece of pavement in front of the house of people we knew. Dripping blood from my shoulder, I went inside and they washed me up. They offered me a ride, but I jogged back to our house, bleeding all the way. The injury left a whitish scar on my shoulder.

I seem to always fall on my left side. It is the side of the shoulder that was separated during a break from my first chemotherapy 10 years ago, when I fell during a doubles match and had to go to the ER right before going back to Boston for another round of chemotherapy.

But back to the present, I had an incredible headache last night and missed book group. We don't meet that often, and I had really wanted to go to discuss "Orange is the New Black." There will be worse outcomes if I don't finally get a grip. I think I will actually succeed this time.

Thursday, October 24, 2013

Goodbye stitches

I got my stitches out yesterday. What a relief. No more bandaged mouth.

Thanks to Korby for taking me.

We went out to celebrate with lunch at my new hangout, Panificio, on Charles Street.

Afterwards I went to tennis, where George keeps telling me how well I've been doing since my kidney surgery. I made a terrible joke, but since it was at my own expense I think it was OK. "Maybe they took out the part of my kidney that had the bad tennis in it," I said.

Then it was home to watch the Red Sox game. I'm sure the commentators will be talking all day about what was up with St. Louis. My sister said it was like watching "The Bad News Bears." I am not a sports analyst, but I have a feeling they will come roaring back tonight.

After that, I watched Stephen Colbert go to a food pantry to try to sign up for health insurance.


Tuesday, October 22, 2013

I am doing well, knock on wood

People knock on wood without really thinking about it, to reverse a jinx brought on by having the hubris to state or expect something good.

"I'm doing well," I might say. "Knock on wood."

A study of college students reported in The New York Times showed that although knocking on wood does not of course influence the course of events, it does reverse the worry that accompanies a possible jinx.

"Across cultures, superstitions intended to reverse bad luck, like throwing salt or spitting, often share a common ingredient. In one way or another, they involve an avoidant action, one that exerts force away from oneself, as if pushing something away," wrote one of the researchers, Jane L. Risen.
"This pushing action turns out to be important, because people’s beliefs are often influenced by bodily feelings and movements. Because people generally push bad things away, we suggest that they may have built up an association between pushing actions and avoiding harm or danger. This led us to speculate that when people knock on wood, or throw salt, or spit, the ritual may help calm the mind, because such avoidant actions lead people to simulate the feelings, thoughts and sensations they experience when they avoid something bad."

I found this interesting because when talking about my good health, I will knock in the air if there isn't any wood around.

This comes to mind because I am just about three months (plus one week) from the five-year anniversary of my transplant. I am superstitious enough that I cannot even use the "c" word that is not cancer. I can say that Dr. DeAngelo's words when I was diagnosed are imprinted in my mind: "After two years, you can break out the Champagne, but only after five years can you say that you are cured."

You get the idea.

I can say with almost total certainty that tomorrow I will get these pesky stitches out of my lip.

Knock on wood.

Sunday, October 20, 2013

Not a pretty sight

My bathroom countertop is covered with snippets of band-aids cut at odd angles. This is the result of my trying to find the right shape to cover up the stitches that run down from my nose to under my lip.

I was happy to get the original bandage off, but the nurse's craftsmanship was better than my own. It looks totally odd, plus I can't keep my hands off of it because (1) it feels like it might feel off, and (2) it hurts when I laugh.

At a distance, you might think my lips were taped together. But as it is, the shape – with a couple of band-aids horizontally and one smaller piece hanging down below my upper lip – makes me look like a chipmunk. It reminds me of the bad old days of high prednisone intake when I resembled a chipmunk.

I stayed off pain meds all day so that I could function, but I had to take some by late afternoon.

I am getting by with help from my friends (and kids), from Atkin's pumpkin bread and Evelyn's chocolate chip cookies and from Macoun apples. I cut them into slices and slide them into the side of my mouth that works.

Looking forward to Wednesday when the stitches come out.

Saturday, October 19, 2013

A better day

Yesterday I couldn't even make it to the corner.

Due to the pain pills, I could hardly keep my eyes open, and the print wiggled when I tried to read. With all the gazilion choices, I couldn't find anything on TV. So I called friends and talked the evening away. Somebody made me laugh, which hurt, but it was worth it.

I tried to eat soup for dinner, but I couldn't get it in around the bandaged area, so I ended up making a smoothie.

I think today will be better.

I haven't needed to take a pain pill, so now I can focus. I am counting down the few hours until I can get this thing off my mouth. I will still need to apply a bandaid, but I will feel like a normal person again!

Friday, October 18, 2013

A pain in the ...

This whole episode is a pain in the ass. It is also a pain in the lip.

After my surgery yesterday, Dr. Neel prescribed 5 mgs. of oxycodone every four hours and gave me 12 tablets. I have taken so much of this stuff in the past that I need more to get the same result. I took one at 3 p.m. and another an hour later, giving me enough respite to write yesterday's post.

Then the pain came shooting back, along with tears. I paged Melissa, my go-to person, and she said I could take two Tylenol and an Ativan, and then around seven I could take three oxycodone if I wanted to. Katie came over, good medicine in itself.

The drug I took after my kidney surgery, hydromorphone, is stronger, and I have some at home that I can switch to when I get back this afternoon. In any case, the pain calmed down last night, but the narcotics caused a loopy, restless sleep.

This morning I got up first and made coffee. I ate a banana and took a few pills and suddenly felt faint and saw white spots around me. I got to the couch with a big glass of water and felt better after I drank it. David gave me his arm and led me back to the table. I made oatmeal and felt even better.

Meanwhile,  I drove my car to Newton but am in no shape to drive it back. I guess I thought I'd get a couple of little stitches and would be able to drive back. Or I didn't think at all.

So...Joe is picking me up today. I'll leave my car here and then over the weekend Katie will drive it back home. Then Joe will drive her back to Brandeis and drive himself back home.

It definitely takes a village.

Thursday, October 17, 2013

Goodbye spot, hello penicillin

I have survived two very long days and a lot of needles, with good results.

I'll go backwards chronologically because the lip surgery is fresh on my mind. I was there for about four hours today because Dr. Neel had to make two passes to get all of the squamous cell cancer off my lip. I was most concerned about how it would feel to get the first needle of numbing medicine in my lip. I've been stuck a lot, but it's such a sensitive spot.

The doctor gave me a blue "stress ball" to squeeze. The needle stung, but it actually wasn't so bad. Then of course I couldn't feel a thing when he operated. When he finished, I started shaking. His assistant said it was from the anesthesia, and it wore off in a bit. I sat in the waiting room with other partially bandaged patients all waiting to see if he needed to take more. Last time I had the Mohs procedure done (on my neck) he said that for deeper skin cancers, he has had to take up to five passes.

The book I am reading, "Orange is the New Black," is just the right thing for a waiting room. Well-written, not too deep, and definitely an interesting story. So I read that and dozed until I was called in again and told he had to take a little more. Then he gave me seven stitches and a prescription for oxycodone. Diane had scheduled a meeting downtown, so she was there to take me home. I had meant to bring some of my own pills but forgot. (How do you get up at 6:30 a.m. and end up rushing at 11 when it's time to leave?) Big mistake. Diane had to listen to a symphony of pain sounds until we got the prescription from CVS. Now I feel OK, although my lip is swollen like a boxer's. I have to eat soft foods out of the corner of my mouth. Nice Nurse Diane is going to mush up some squash for me.

So, as for yesterday. I passed the penicillin "challenge," which also involved many hours and many needles. The doctor, a fellow, then looked at my chart and suggested I return for another long visit to check whether I am allergic to imipenem, an antibiotic that caused me to break out in hives when I got it intravenously to treat the pneumonia I had this spring.

I am not a doctor, but I ventured to ask why I needed to be tested to see whether I am allergic to a drug that caused an allergic reaction. He said that sometimes hives appear for no reason.

Hmmmmm. I said I would talk to Dr. Alyea and Melissa first. I think they will agree with me that another allergy test will fall into the category of unnecessary testing.

Monday, October 14, 2013

Back and forth to Boston

Katryn Gabrielson and moi

It was really nice to spend a day in Boston yesterday for a reason other than medical appointments.

I met my friend Katryn from Vassar there for a walk along the Charles and a stop at our favorite bistro and bakery, Panificio, located on Charles Street right across from the Esplanade, where we planned to walk. Well, to tell the truth, we stopped there twice, first for lunch and second for coffee and a pastry after we walked. Actually, we could have sat there for the whole day talking and catching up in what has come to be a yearly outing as we meet somewhere between her home in Portland, Maine, and mine in South Hadley.

After my trip to San Francisco, I had wanted a visual drink of water to remind myself that we have our own beautiful waterway. 

My reprieve, alas, is short-lived.

Starting Wednesday I have three days of appointments in Boston. First, penicillin allergy testing and second, removal of the squamous cell cancer on my lip.

For Friday I added a third appointment with a dentist at Brigham and Women's Hospital specializing in issues relating to transplant patients. First of all, with my dentist removing teeth left and right, members of my care team said it's a good time to check in with an expert. Also, Dr. Goguen (the tongue doctor) and I discussed the possibility that the spot on my tongue might have occurred because I am missing the last tooth on the bottom left, and the "new" back tooth might be cutting into the area on the side of my tongue that she had scooped out due to the presence of pre-cancerous cells.

During three days of pokes and prods, visions of the Charles will dance in my head.

Saturday, October 12, 2013

Stop and see the flowers

My mother never met a flower that she couldn't use.

If a bud or bloom came off a stalk, she made a "floater" and placed it in the middle of the dining room table. She always had something beautiful to put in.

Here are some floaters that came off the hydrangea bush in my front yard. I put them in a crystal bowl that sits on silver legs. I guess this is supposed to be a serving piece, but it was better served as a place for floaters.

My mother was a habitual worrier like I am, but when she was making something beautiful, she wasn't thinking about anything else. She picked flowers from her garden and placed them in a vase so that they would fall just so. She said that when she had trouble sleeping, she worked in her garden.

Here is an example often used to describe how to be in the moment: "When doing the dishes, just do the dishes."

Putting the floaters on the table worked for me.

Tuesday, October 8, 2013

Tongue tale, cont.

I made out well at Dana-Farber yesterday, starting with my appointment with Dr. Goguen, the one that had made me most concerned.

She said the spot on my tongue was much smaller. She said these words which are welcome to any patient with a problem: "I am not impressed." At our previous appointment, she had said she might have to biopsy my tongue, and I was relieved that that didn't happen.

Next it was on to the Kraft Blood Donor Center for therapeutic phlebotomy to reduce the amount of ferritin in my system. I passed the time talking to the phlebotomist, who liked my Spanish leather boots so much that she bent down under my feet to see if she could find the maker's name. I sat next to a woman who has been donating platelets on and off for 15 years. Very admirable.

Then I ate lunch with my friend Wendy, who had driven me to Boston. It was fun having her company, and also important for me to not drive back after getting a pint of blood taken out.

My regular checkup was fine. I have a normal white blood count and hematocrit. Platelets were 127. The normal range is 155-410, but being over 100 is good for me.

My ferritin – the protein that stores iron in your body so it can use it later – is still outrageously high at 4582; normal is 10-170. Ferritin is stored in many types of cells, including liver cells, where an excess amount can cause serious damage.

I am going to have to go back on Exjade, five pills dissolved in water on an empty stomach, and no food for 30 minutes after.

I have been off Exjade for quite a while because it makes me feel so sick. A friend who also had multiple bone marrow transplants, and countless transfusions, said she plowed through with taking eight months of Exjade and now her levels are normal.

I tricked my senses this morning after taking Exjade by making strong coffee and deeply inhaling the smell. I guess that will be my morning routine for a while.

Friday, October 4, 2013

Furlough over

My furlough from medical appointments ends on Monday.

Despite the call from stupid voices in my head to shut the process down, I have decided that it is for the betterment of my general health to keep it going. One little vote was all I needed.

Monday I need to leave for Boston bright and early for a 9:45 appointment at Dana-Farber with Dr. Goguen, the doctor who is in charge of my tongue. I have been swishing and spitting like crazy to make the spot go away and avoid a biopsy. I stuck my tongue way out in the mirror and saw that a small white area is still there on the side. Well, I'll have to see what she says.

After that I have an appointment at the Kraft Donor Center for a therapeutic phlebotomy, basically a blood-letting to help lower the outrageous amount of ferritin stored on my liver. The process will make me a little anemic. I hope I reboot for tennis on Wednesday.

Next Wednesday I am scheduled for penicillin allergy testing at Brigham and Women's. I have been putting this off for a while, because who wants to be stuck with needles and wait around to see if you blow up? (Slight exaggeration, sorry.) That allergy has been on my chart since childhood, making it impossible for me to take this good drug, and I am wondering if I still have it or ever did.

Coincidentally, news stories have been focusing on the over-use of broad spectrum antibiotics and the probability that many people who think they are penicillin-allergic probably aren't.

 I'm staying overnight Wednesday (missing tennis!) and then going to have a piece of my lip cut off on Thursday. (Sorry, another exaggeration. It will be a small piece.)

Sounds like fun, doesn't it?

Tuesday, October 1, 2013

Morning meds

Swish and spit gross anti-fungal mouthwash.

Suck on gross anti-fungal lozenge.

Take 14 pills.

Use prescription eye drops.

Wash off anti-viral cream applied to hands last night.

Sigh and say to friend: "So many meds."

Words of wisdom from the friend: "Thank goodness for that medicine."