Tuesday, December 31, 2013

Long drive for a blueberry muffin

Joe and I went all the way to Boston today to buy a blueberry muffin at Whole Foods.

It wasn't supposed to be this way. In the "there's always something" category, the top left of my lip has been stinging and burning again, and there are some suspicious-looking thingies on it around where I had the squamous cell cancer removed in October. A receptionist at the office of Dr. Neel, the dermatologic surgeon, said a nurse could see me today although the doctor would not be in. When I got there, the nurse said she couldn't tell me anything except that Dr. Neel should look at it…when he gets back from vacation on Jan. 13. She didn't understand why a receptionist had told me to come all the way from Western Mass for that, and I didn't understand it either.

There is no decent parking at this dermatologist's office, so we parked a few blocks down in a lot where parking is free if you make a purchase at one of the stores bordering it. Hence the Whole Foods muffin.

Well anyway, I had a good time talking to Joe.

The dental surgeon said yesterday that the phantom tooth might hurt for a while due to slow healing caused by my friend prednisone. I woke up the other day with a terrible headache, which went away when I took some oxycodone. The headache came back when I waited longer than usual to take another dose. This is when I decided I might be addicted to the narcotic. I looked up "headache and oxycodone addiction" and decided that it was what I had.

In the morning I called Melissa and she said to forget about it. She said hopefully the pain will be short-lived, and I should take oxycodone as long as I need it. If I have trouble stopping, my Dana-Farber people will help me. As long as this goes on, I will have to dance around the discomfort, working in activities when I am not on drugs.

That's it for now. Happy New Year to all!

Sunday, December 29, 2013

Taking life one tooth at a time

This morning I was lying on the dining room floor snuggling with the dog while two boys talked rapid-fire about football. The "boys" are Ben and Joe, all grown up, and I frankly had no idea what they were talking about, but it was pure happiness listening to their banter.

It was pure happiness too when about an hour earlier all three kids sat at the kitchen table for our annual Christmas get-together with our friends Jim and Jane, who are like aunt and uncle to the kids and to Maddie. The dog goes crazy when they come in. Last year I made the mistake of letting her go outside to greet them, and she knocked Jane's Christmas cookies out of her hand, so our visit consisted of wiping the snow off the ones we could salvage. This year they came in first and the dog merely ripped the shopping bag that contained her gifts, dog treats and a teddy bear. I've known Jane since she first started babysitting for us, and my instructions before I went to work were to watch out for 3-year-old Joe because he might try to turn on the burners on our old gas stove. Jane stayed on and has now along with Jim switched from babysitting to dog sitting. We ate muffins and drank coffee, part of the ongoing holiday festivities that will end Jan. 1 when everyone returns to the gym.

Ben was only here one night, but it was great to have all three kids under one roof.

I have to admit getting a little jealous seeing people post on Facebook about vacation trips while I have mostly still been preoccupied with my tooth, which caused us to cancel a New York trip we were planning for visiting cousins and friends and seeing the Christmas tree. People are probably getting as tired of the tooth story as I am of living it, but it still goes on. Ouch. That sounds whiny. I hate to whine, but still…

Having the tooth pulled was not the end of it. The place where it was has still been hurting. I went to see the surgeon about it on Friday and, like a switch, the pain caused me to burst into tears. He asked me if I had been brushing, and I said only gently with a mild prescription toothpaste. Then he removed a stitch that was covered with plaque and said that my latest pain is coming from plaque in the area resulting from not brushing hard enough. I was trying to do the right thing by avoiding the area, but it turns out I wasn't. So now I am supposed to rinse with salt water, brush more, and return to get it re-checked on Monday.

My new motto, instead of "one step at a time" is "one tooth at a time."

At least my legs feel better, which is a step in the right direction. I got new orthotics Friday, and my foot guru, Ken Holt, said some of my trouble might be coming from wearing a pair of orthotics that were worn down. So he made me a new bouncy pair. He said my pain is muscular and he doubts that my most recent MRI will turn up anything. I still haven't gotten results from that.

Wednesday, December 25, 2013

Merry Christmas and goodbye tooth

The kids are at Jim's, and it is just Maddie and me for Christmas, which I used to celebrate when there were children and a husband in the house, but which is no longer for me.

I am glad to be rid of all the hoopla, but which parent who has had young children in the house can forget the excitement and fun?

I amused myself last night by checking in with the Norad Santa Tracker,  watching Santa's journey around the world and keeping an eye on the digital counter showing how many gifts he had left. Last time I looked, he was over Warsaw, Poland. This morning I checked in again and saw that, his journey completed, he had delivered 7,060,919,100 gifts.

Next I made blueberry pancakes and watched "A Christmas Story," which gets better every time.

I'm going to walk Maddie and then see "American Hustle," and after that, bring home Chinese food to have with the kids. This time last year, I was eating Chinese food in Barcelona with Katie. We were surprised to find an excellent restaurant. We got there around 9 and thought nobody was coming, but then, it being Spain, diners started to file in until the place was filled.

Dec. 25 was my parents' anniversary. They got married then because, after the Christmas rush, it was a good day for my mother to close her jewelry store. My mother loved to tell the story of how she wanted to spend their wedding night at the Plaza, but my father insisted they stay across the street from Penn Station at a hotel with a tunnel connecting to the station. He was afraid that otherwise, the impending winter storm would keep them from catching the train to their honeymoon in Florida. As it turned out, the blizzard of 1947 roared in and they rolled out. She said that after that, father always knew best.

Moving on to another topic, I had the troublesome tooth #3 pulled on Monday. It still hurts a lot, but that is to be expected after an extraction. I am following my Dana-Farber doctor's guidelines on how much oxycodone I can take, and it is quite a bit. Yesterday I thought it was getting because I didn't take anything all afternoon or at night. That is a good sign, but today it kills again. I hope that with all the medication in me, I don't fall asleep at the movies.

Sunday, December 22, 2013

Throwing in the towel

The pain-free days did not last long. The tooth pain came roaring back, and the endodontist said finally that there must be a crack in the tooth allowing bacteria to get in. I am going to get it pulled on Monday.

When I sent out a text to some people telling them of the upcoming extraction, I concluded: "Send baby food."

I really wanted to save that tooth because I am losing so many around it, but I couldn't go on like that. I don't think my Dana-Farber doctors will want me to get implants, so I'll have to talk to someone about dentures down the road.

I had asked Melissa if I could take Advil because it seems to help with dental pain. She said OK, but not too much and not for too long. I knew that the reason I can't take Tylenol is because it is bad for my  liver, but I was unsure about ibuprofen. Melissa said it is bad for my kidneys, which already took a wallop when I went into kidney failure after my last transplant. I took Advil three times in the past few days, but it didn't help anyway.

So it is oxycodone or pain, every four hours. I will be glad to get rid of that.

The MRI on Friday almost made me forget the tooth pain. Nothing like the feeling of having your head drilled into to make you forget about your other problems. It was hard to make it through the hour-long procedure. Claustrophobia wasn't the worst part of it. I kept feeling like I needed to cough due to post-nasal drip from lying on my back so long. At one point I did cough, earning me the opportunity to have one whole sequence repeated. I had to ask them to slide me out of the tube for a sip of water, not an easy thing to do when you are lying on your back and cannot move.

Also just so I wouldn't have a dull moment, there are some painful little blisters on my lip right where the squamous cell cancer was recently removed. I will have to call my dermatologist about this on Monday.

On a positive note, the piece I wrote for Yankee Magazine on the Crazy Orchid Lady of Shelburne Falls, Mass., was accepted, and a check is in the works. The magazine has crazy lead times and so the article will not be in for a while.

 I finally got to tennis on Thursday. My legs didn't bother me until the end, and it was great to hit the ball. George said that the three other players in the clinic have improved greatly since the fall and that I was doing a good job keeping up with them. I said it must have been all that lying on the couch, visions of tennis balls dancing in my head.


Tuesday, December 17, 2013

Feeling a little better

I have had two almost pain-free days, which is unusual and very welcome.

Sometimes I get a twinge in my tooth, and I panic that the toothache is coming back. It reminds me of the panic I also get when I feel a dart of heel pain – the first sign of the dreaded plantar fasciitis. Fellow sufferers know how long it takes to make this debilitating condition go away. Anyway, I no longer need to take oxycodone for my tooth, although I have taken Tramadol, a pain reliever that is a step down.

My legs also feel better, though it's the same thing – they still hurt sometimes. Yesterday at physical therapy Michael worked me pretty hard rather than letting me lounge on a table receiving heat, ultrasound and massage. Following doctor's orders, I intend to play tennis Thursday.

Intend is in italics because it was one of our vocabulary words today in class at the Literacy Project the last day before vacation. I have enjoyed this volunteer job helping to teach reading and writing to adults. I should have headed straight home, but I liked being in Northampton in the snow. Instead I went to the Haymarket and had a scone and coffee while reading the newspaper.

For a change of topic, I'm linking to a recent post I wrote for Newsmax on the many different ways my hair has grown in after each round of chemotherapy. It's funny – most people recognize me although I look a little different, but others look right through me. (This usually happens at the supermarket. Maybe they would look through me anyway.) At a gathering of past and present newspaper people a couple of years ago, a former co-worker actually asked me who I was.

Well anyway, click here if you want to read about how I sometimes say that my darker hair is my consolation prize from having had cancer.

Sunday, December 15, 2013

Platelets no longer pokey

I got some excellent news at my Dana-Farber visit on Thursday: My platelets are normal for the first time in five years! Like most writers, I dislike exclamation points, but I think this case merits an exception.

Well, they are almost normal. My platelet count is 148 out of a normal range of 155 to 410. However, unlike in horseshoes and pregnancy, almost is good enough in platelet counts, so normal it is.

I flashed back to the bad old days of platelet counts as low as two and talked to Diane about the horrible night when I was at death's door and needed platelets before I could get an emergency procedure, but she couldn't donate for me because she had taken Advil, which acts as a blood thinner. It was touch and go until the blood bank reached a man whose platelets were a good match and who went in to donate just for me.

My other counts were normal as well, except for my sodium, which was a little low, which means I will have to eat more salty snacks. Too bad I prefer sugar.

I told Dr. Alyea that I was low on endorphins from having had only yoga and walking for exercise, and he said to go out and play some tennis to the extent that my legs don't hurt. Problem is, my quads still are sore. I had an MRI of my legs in which I was strapped down like a patient in a straightjacket. The results showed some inflammation but nothing serious. Since that was so much fun, I have now earned the chance to have an MRI of my spine. I am not totally sure what this is about, except that Dr. Alyea wants to check on the condition of my discs. That procedure is scheduled for Friday. I wrote Melissa to say that I was probably getting ahead of myself but that I wondered what they would do if they found something. She wrote back that yes, I was getting ahead of myself but that she would call me to discuss.

Thursday, December 12, 2013

Boston-bound for checkup

My tooth hurt like hell again the day after the root canal, so I went back in and one of the Western Mass Endo dentists removed the packing to let the air out. My dentist friend Claudia, who has been a great help in all of this, said sometimes putting in a temporary filling is like putting a cap on Mt. Vesuvius; all the gas is trapped inside.

It felt better, but then the next day it started hurting again. I thought I was doing a good job of eating on the other side, but something had gotten in and stopped it up again. I have seen four different endodontists in the same practice, so sometimes I forget which doctor did what. One of them removed the food from my tooth.

It still hurts though not as much. When I return tomorrow to have the tooth closed up, they won't be able to do it if it still hurts. I might end up getting the tooth pulled after all of this. I can't stand the thought of that because I have already lost so many teeth.

Today I go to Dana-Farber for my regular check-up and an MRI to try to get to the bottom of why my quads still hurt. This makes me nervous. I thought it through and realized that if my regular doctor had ordered an MRI, I wouldn't think anything of it. But since it is cancer doctors asking for it, my mind jumps to terrible things. But as I reasoned out loud to Joe, I'm sure there is no such thing as cancer of the quads. If you're a hypochondriac to begin with and then you get hit by cancer, it is hard to keep your mind from jumping to conclusions.

Also now my knees are acting funny; they won't straighten out when I get out of bed or stand after sitting for a while.

I wonder if all of my running has caught up with me. If that is the case, I will have to change the name of this blog from Running for My Life to Crouching for My Life.

I am really tired, and I am a little concerned about making the drive to Boston. I am going to stock up on food and coffee to keep myself awake.

Tuesday, December 10, 2013

Technology glitch and tooth pain

I have not updated the blog because both my computer and I have been out of commission.

The computer issue was easily fixed – I bought a new one because my old one, from 2008, was past its prime anyway – although the fix was not as easy as you might think. I paid $100 to have my information migrated to my new MacBook Air, and when I finally got it home last night I opened it to do some work on deadline.

I had paid the money (which also buys you a class) because the salesperson said that when people try to do the migration themselves, they usually run into problems. But the Geniuses had migrated my original problem, and I couldn't get into the computer. I called the Apple store and they said everyone at the Genius Bar was busy and I would have to return to the mall at 10 the next morning. At that point I lost my cool. "I am on a deadline and I have to use it NOW," I said.

So they connected me with someone at Apple Care, and after trying this and that for at least an hour, I finally got in. My helper said that occasionally the migration doesn't catch everything. No kidding. You can't say over the phone that you would have had to kill someone if it wasn't fixed, because you never know who's listening, and the police might show up at your door. So I thanked him for helping to preserve my normally docile nature.

I was in no shape to write my Newsmax blog post, which was due that day, but I started it anyway. This morning, I couldn't find it on the computer, so I started again and, and finished. It will probably pop up somewhere when it's no use to me.

Meanwhile, the toothache saga continues. After being told by my now-former dentist some three weeks ago that there was nothing wrong with the tooth that hurt, I finally got a root canal in it yesterday. This morning it killed me again. I am going back this afternoon to have it opened up and looked at again.

When I heard the price, I nearly fell out of the chair. $1,500 for the root canal and $1,500 for the crown that I will need.

I should have been a dentist.

Somehow I have managed to get my writing and editing done in between outbursts of pain from my tooth and outbursts of error messages from my computer.

Wednesday, December 4, 2013

Toothache, tears and wacko birds

I have cried more over this toothache than I ever cried about leukemia.

It is like there is a direct pathway from my tooth to my tear ducts. I cried on the phone yesterday when trying to get an endodontist to take a second look earlier than my scheduled date of Friday. I cried when I called Melissa to update her, and I cried on the phone to a friend. I cried at 1:30 a.m. when I woke up the second after my oxycodone wore off.

I went downstairs, made tea, took an Ativan and two more oxycodone tablets of five mgs. each. Joe was still up, and at least I found some distraction in talking about Jacoby Ellsbury signing with the Yankees.

By the way, I am not taking oxycodone willy-nilly. Melissa (my NP at Dana-Farber), knows that I don't like taking it, but since it is the only pain reliever I can take given my history, she said to go ahead and take it to get over the hump.

I have been in dental purgatory for some two weeks. That is a long time to have a toothache. The latest is that my regular dentist said today that the tooth that is hurting (#3), needs to be opened up and have some kind of anesthetizing material packed into it. He said he is so busy he doesn't have time to eat his lunch and is tearing his hair out. Call the endodontist and have him do it, he said. I said I thought endodontists only did root canals, but he said this is not so. He said he could not help me anymore. So I called the endodontist's office, where the receptionist said endodonists don't do that, only regular dentists do. She promised that she would have her guy call my dentist and that someone would get back to me by the end of the day. Which. Did. Not. Happen.

Late this afternoon I called my dentist again. Each time I open my mouth to talk about this I start to cry. I said that I needed to be seen tomorrow and that I would bring the dentist his lunch if that was what it took. She put me on hold. Finally she got back to me and said that another dentist in the office could see me tomorrow morning. I have never been so happy to make a dentist's appointment.

I hope that my hopes are not dashed. As a backup, I am keeping my appointment with the endodontist Friday in case the pain is actually being referred from a different tooth.

For some reason it makes me feel better to mumble these words that John McCain used to describe the Tea Party:

Wacko birds.

Monday, December 2, 2013

Toothache, cont.

I went to another Thanksgiving dinner (my third! such abundance and so many blessings!) at the house of a friend whose family gatherings include extended family. Best food (best chestnut stuffing ever) and great company.

However, while everyone was having a drink or two, I was counting down the time until I could take my next oxycodone for the worst and longest toothache I have ever had. I have gone from dentist to dentist seeking the cause of the pain. Who knew I would now be talking in tooth numbers? It is not actually coming from #3, the tooth that feels like the culprit. My dentist opened up and refilled the tooth beneath it, #30, which actually did have a small cavity and might be causing the pain in the upper tooth. No luck. So now it might be #31, also on the bottom row, in which I had a root canal many years ago. The endodontist who did that one can't see me until Friday. The endodontist who looked at the first tooth can't look at this one because they are so specialized that each can only look at his own tooth.

Geez. I say, pull 'em all out. No I don't, not really. But my dentist did say that some people in my situation end up doing just that. I hope it doesn't come to that.

Yesterday morning I went to the emergency room because the pain was spreading into my ear. I thought maybe I had an ear infection and that it was referring into tooth pain. I saw a PA who told me I did not have an ear infection but that the gum next to #3 (got that?) was inflamed, so he gave me a strong antibiotic, Clindamycin, to treat that, and hopefully it will help with the tooth pain.

I woke up at 3 a.m. in agony, wondering if I should take another oxycodone or not. It was time, but oxycodone does a weird thing to me, disturbing my sleep. I wasn't sleeping anyway, so I probably should have taken it, but I had left the bottle all the way downstairs, and I didn't feel like going there. I took half an Ativan instead and kind of dozed off until 6:30 a.m., the usual wake-up time for Maddie and me.

I have writing and editing to do, and if I don't time it just right, the words swim in front of my eyes. Leg pain is still also a problem. Melissa wants to set me up with an orthopedist in Boston.

I am eating apple pie for breakfast as I write this. I think I'll have some more.

Friday, November 29, 2013

Two holidays merge into one

Above, Joe, Ben, Katie and moi; below, Deborah and Charlotte
with the banner made by Meghan.
We had fun taking advantage of a once-in-a-lifetime opportunity to celebrate Thanksgivukkah, the convergence of Thanksgiving and Hanukkah.

Turkey with cranberry sauce, plus latkes with apple sauce, actually went together well along with the traditional fixin's. For dessert, we gobbled up (sorry!) pies made by Katie (pumpkin) and Evelyn (apple). Afterwards, we lit the menorah and I gave out presents; just some little things.

It definitely is nice to be done shopping before the Christmas rush begins.

I have been slivering the pies all night. I'm just sorry that I'm not running the Talking Turkey race tomorrow.

Wednesday, November 27, 2013

Last-minute menorah shopping garners results

It was a day before Hanukkah, and I was on my hands and knees, saying to myself, "If you were a menorah, where would you be?" This was a risky thing to do, given that I was unsure how I would get up, but I was determined to look in all of the usual places.

I found the candles and the blue and white napkins decorated with dreidels and stars, and even the Happy Hanukkah banner, which, courtesy of Meghan, will be replaced this year with a Happy Thanksgivukkuh banner. I also knew where to find our traditional Thanksgiving table decoration – the tiny turkey that Katie made many moons ago out of an upside-down clay pot, pipe cleaners and construction paper. But no menorah.

So with a day to go, I went hunting. My first stop, the Yiddish Book Center, turned up only children's menorahs. Since I was heading down to the Longmeadow area anyway, I went to the gift shop at Temple Beth El in Springfield. They didn't have the traditional one I wanted, but it was so last-minute that I almost bought a more modern menorah modeled after the one in front of the Knesset in Israel.

Across the street at Sinai Temple, I found a curiosity: a musical menorah that played "Rock of Ages." It reminded me of our family gatherings in New Jersey when we used to sing that song in unison. I was relieved when my eyes settled on one that was just right, nothing fancy and nothing funny.

I put it on the table and, miracle of miracles, the candles stayed in without wobbling. We lit the first one tonight.

My aches and pains are still unresolved, but at this moment I am putting them aside to say Happy Thanksgiving/Thanksgivukkah to all, and let us proceed to celebrate all of our blessings!

Sunday, November 24, 2013

Still in pain

Happiness is...Joe asleep on one side of the couch, Maddie on the floor, and me on the other side, dozing also, covered with a soft blanket, the pill that I finally took for the pain in my legs taking effect...and also, a football game on the TV,  just background noise because it's not my thing.

A nice family snapshot. I finally got up and opened the door for Maddie to go out, but the leaves were blowing like crazy in the wind, and she didn't want any of that, so she settled for her lunch and is now asleep again at my feet in the sunny dining room.

I thought I had turned the corner, but there are just little bursts of feeling better, and then I am in pain again. It's weird because I can do things like go to yoga, which I think is good for me, and where I actually feel fine and don't hurt. I got a refill on my oxycodone – which I also need for my tooth – but I definitely can't live on that. I don't know why I let the endodontist make me wait all the way until Dec. 2 for a follow-up appointment when that crazy tooth is still killing me.

I'm going to get on the phone tomorrow and try to figure out the next step of which kind of doctor I need to see and also try to get my dental appointment moved up, although I'm afraid I won't get many results on Thanksgiving week. At least I can talk to someone about about my legs it at physical therapy Tuesday.

Well, at least the rash is gone, and I am on a prednisone decrease.

Last night I read some of "Double Down," the Game Change version of 2012. I have to admit I love all that politics. It served as a nice segue to the movie I watched on TV last night. I was reading that Obama changed his mind about gay marriage after seeing "The Kids Are All Right," about two lesbian mothers whose children track down their biological father. It was a great movie that took my mind off of my aches and pains.

Thursday, November 21, 2013

Turning the corner, with a little help from yoga

Things seem to finally be turning the corner after a bad two weeks when everything that didn't hurt itched like crazy.

The allergist who gave me the penicillin test showing I was not allergic returned my call yesterday and said he was very, very sorry. He said the good news is that the test showed I would not go into anaphylactic shock if I really needed penicillin. He said that when listing allergies I can write penicillin with an asterisk. So I'm supposed to explain this every time? I think I'll just say "allergic."

The doctor said it was extremely rare to break out after passing what they call the challenge. Just about as rare as getting hit by lightening. I guess I like to do things differently.

I was folding clothes on my bed when he called, and I lay down with the laundry and cried. The combination of everything, plus the oxycodone and probably the higher prednisone dose, got to me in a way that not much else has.

Well the rash is now fading, and I am decreasing the prednisone to 20 mgs. for five days, then to 10 and back down to four.

My mystery tooth still hurts, but I see a solution down the road. Bouncing from dentist to dentist was not much fun. After my local dentist sent me to Boston, I tried to explain to Dr. Boston what my local dentist had said. He cut me off, saying, "I don't really care what your local dentist said." Geez Louise, I was just trying to explain. He said to go to an endodontist in my area to see if I might need a root canal; he was also supposed to fax some notes to said endodontist, which he did not. It wasn't hard for me to pinpoint which tooth hurt, however. The endodontist said root canals are much easier than they used to be, and after a follow-up appointment, that is probably what I will have.

I did an amazing thing last night which I think finally unclenched the muscles in my thighs, making it possible to actually start the day without taking any drugs.

I went to a Yin Yoga class down the road at the Serenity Yoga Studio. I really didn't know what this was except for that it is slow like restorative yoga but is not the same thing.

According to Serenity Yoga's website, it is  "a passive form of asana practice in which students sink into familiar floor postures for 5-minute intervals. This practice enhances flexibility and balances the flow of energy to organ systems, literally juicing up the joints, aiming for a deep level of health and well being. Yin Yoga is a yoga practice designed to encourage the muscles to let go. It targets the connective tissues, such as the ligaments, bones, and even the joints of the body. Rather than engaging muscular strength and the cardiovascular system, Yin Yoga appropriately and safely exercises the body’s connective tissue. The asanas (postures) are held for an extended time to create space in the body encouraging the release of tension and produce greater access for fluidity and mobility.

I am celebrating the new day with a cinnamon scone. I also took Maddie for an oatmeal bath, so that when we reunite tonight I predict we will both feel much better. 


Monday, November 18, 2013

Confessions of a prednisone popper

You wouldn't think I would say this, because I'm always writing about being happy when my prednisone dosage is reduced.

Well I am like a kid with a box of candy. Gimme more, more, more.

Melissa had said to increase my dosage to 10 mgs. from 4, which I did over the weekend, with no relief from pain and itching. When I talked to her this morning, I asked if it was possible to go up to 40 and then do a taper. She said it was a good idea.

So I delved into my supply of 10's and popped three more in addition to the one I had already taken.

I can tell that this morning's oxycodone has worn off, because my legs hurt again. I am going to run (I mean drive) to the store to get some more Benadryl. Maddie is scratching too, so I gave her an allergy pill prescribed by the vet. We are an itchy couple.

I am scheduled to tutor tomorrow, but I think I will switch to Friday. I have an appointment with an endodontist tomorrow to hopefully find out the reason for the mystery pain in my tooth. After that I have physical therapy. Unless the higher prednisone dose works miraculously overnight, I don't think I could make it all day without an oxycodone if I did the tutoring.

If you see a chipmunk walking down the street, it might be me.

Sunday, November 17, 2013

Of rhino horns and other things

Just wondering: Can you sue an allergist for pain and itching when he gives you a test that shows you are not allergic to penicillin and then you take the antibiotic and break out in a head-to-toe rash?

That's all I'm writing about the itches and aches for now. I'm afraid it might be getting a little tiresome (although probably not as tiresome to you as it is to me), so I'm switching the channel today.

So I am also wondering: Have you ever heard that some people think the powder from rhino horns can cure cancer?

I recently read a newspaper story saying that the quest for rhino horns is destroying entire rhinoceros populations because of a myth that rhino horns can cure cancer, among other things. That made me think of other bogus cancer cures, leading to a post on the subject in my Newsmax Health blog.

Click here to read the story.

Friday, November 15, 2013

Pain, pain go away

It turns out that the pain in my quads is probably not due to over-exercise but is instead caused by a new appearance of graft versus host disease, this time in my muscles.

When I saw my nurse practitioner, Melissa Cochran, yesterday, she said that such intense and prolonged pain didn't sound like it had come from an exercise injury, and that is my thought too. It is news to me, however, that GVHD can appear just like that, nearly five years after transplant, but I guess I shouldn't be surprised given what I am reading on friends' blogs.

Melissa discussed with Dr. Alyea the possibility of raising my prednisone to help diminish the inflammation, but he had left for the day today before the decision was final.

I am currently on four milligrams per day, and asked if I would be upping it to five. She said no, 10. Sigh. I would do anything to stop the pain that brought tears to my eyes this morning when I could hardly get out of bed, but still, the downsides are notable, including lowered resistance to illness and weakening of muscles.

I felt much better after ultrasound, heat and massage at physical therapy today, and Melissa said that if I still felt better in the morning, I could keep the prednisone at its current dose. But if the pain is severe again, I will need to take the 10.

Also on the pain front, I saw the Boston dentist, Dr. Treister, yesterday, and he said he really doesn't know what is wrong with the tooth that is causing me so much trouble. He suggested getting a consult about a possible root canal, so I set that up for next Tuesday. Sigh again. The only funny thing that happened yesterday is when I called my local dentist's office and got the same receptionist I have called over and over during the past week.

I was in a busy coffee shop and could hardly hear her when I asked for a referral to an endodontist's office. "Are you in pain?" she asked. I said I was. Her question took me aback for a minute, because I thought she had asked, "Are you insane?" I told her what I had thought she said, and she laughed and said I was actually being a good sport about the whole thing.

My visits yesterday included a stop at my dermatologist's office. She biopsied a spot on the side of my neck that looks like it might be a basal cell carcinoma that will need more Mohs surgery.

Meanwhile, it seems that I am actually allergic to penicillin, even though I took a lengthy "challenge" just last month to test if I still had a childhood allergy to the antibiotic. I passed the test and then proceeded to tell my dentist he could give me amoxicillin for an infection I have in my gum. Today I noticed that my arm had broken out, and then my legs, and then my stomach. Well, you get the idea. I took some Benadryl and can barely keep my eyes open long enough to write this.

Wednesday, November 13, 2013

Role reversal

It seems like only yesterday when I would be sitting on the couch at night and some child would come downstairs, wrapped in a blanket, upset about a bad dream or something else.

Last night I was the one who came downstairs wrapped in my blanket. My tooth wasn't too bad during the day, but at night it flared up so much that my ear hurt and I started shaking. I took two oxycodone (10 mgs. total) but it didn't help. Joe was in the den watching basketball. Maddie had thought we were in for the night and jumped off her bed and followed me down. With her on my left and Joe on my right, I stopped shaking and fell asleep. The rest of the night was OK.

Meanwhile, after tutoring yesterday I took my still-painful quads to physical therapy. I am going to do another round of sessions, which will be a combination of ultrasound and massage along with working to strengthen muscles in my hips and quads. Anybody who walks with me knows that I am sometimes shaky...although I am quite capable of walking long distances, like I did with Katie in Spain. I enjoy the people at  physical therapy, and I'm looking forward to going back there. This is important because if I plant my feet more solidly, hopefully I will stop falling.

I did something uncharacteristic, canceling tennis for today. I will, however, try to get to yoga.

I really need to write something (other than this), but I'm not sure how it will go. I had to choose between being in pain and getting a little loopy, so I chose the loopiness and took two oxycodones.

Now I just need to get myself to Boston tomorrow, where I hope Brigham and Women's top-notch dentist will fulfill my great expectations.

Tuesday, November 12, 2013

Dental drama, cont.

I finally got to see the dentist yesterday, and he replaced the missing filling.

He took an X-ray of the tooth that hurts and couldn't really locate the cause. He said that in general my teeth were looking pretty bad and that I might one day consider getting dentures, although I am not there yet. He started to write a prescription for oxycodone, but since I already have one, I didn't take it.

The problem is, it's OK for me to take oxycodone at home, but I can't go out and about with it. He said to try a tiny tiny bit. I would rather be in pain than wrap my car around a tree.

I am glad that I have an appointment with the specialist, Dr. Nathaniel Treister, on Thursday. I am trying not to glom onto the denture thing because I have faith that he will figure it out. Still, I flashed to a memory of an elderly relative using his tongue to push his dentures in and out of his mouth.

To reassure myself, I reread Dr. Treister's profile:

Associate Surgeon, Brigham and Women's HospitalAssistant Professor of Oral Medicine, Infection, and Immunity, Harvard Medical School

And his research statement:

I am principal investigator on an investigator-initiated prospective clinical trial for management of oral chronic graft-versus-host disease, supported through the DFCI hematology/oncology division. I’ve conducted and have a number of ongoing retrospective studies looking at clinical characteristics, complications, management outcomes and cost analyses of patients with oral chronic graft-versus-host disease and other oral medicine conditions. 

Monday, November 11, 2013

The toothache from hell

My sense of humor is failing me.

I called my dentist on Friday to see if I could get in there because I had lost a filling on the left side of my mouth and had a terrible toothache on the right side. This was after he had told me to chew on the left side because I have an infected tooth on the right bottom. It was the upper right that was beginning to kill me, even though he had tapped on it and said it was just referred pain from the bottom.

Debbie, the receptionist, said he couldn't get me in until Nov. 21. "You've got to be kidding me!" I said. Nope. All she could do was call me if she got a cancellation.

Over the weekend, the pain came and went and then came and stayed until last night it was almost unbearable. I paced from the den to the kitchen and back and then sat on the couch and cried. I told Joe that it was worse than any pain I had ever had. Of course this is hard to judge, because at the time that you are having pain high on the scale, it will seem like the worst. I took two oxycodone (10 milligrams total) and an Ativan and made hot chocolate. I finally went to bed around 1 a.m.

This morning I took some Tylenol so I could drive if I got an early appointment with the dentist. Thank goodness for "Morning Joe," my comfortable couch and the cozy blanket I wrap myself in while Maddie dozes on her side and I doze on mine.

I ticked off the minutes until 8:30 when I could call. I stressed the words "oxycodone" and "terrible pain." Debbie said Dr. Debian was booked solid but she would check and call me back. Shortly after that, she called and said I could come in at 4:30 today. I hope he will take an x-ray to get to the bottom of this. I hope I am not sounding like an addict, but the Tylenol didn't help, so I took another oxycodone, otherwise I would be crying again through the day. By the time of my appointment, it will have worn off so that I can drive.

I will be ticking off the minutes until 4:30.


Friday, November 8, 2013

Comedy of errors

This one's not so funny, really.

My dentist said that because of the gum infection on the right side of my mouth, I should chew on the left side.

But yesterday a filling popped out on the left side when I was flossing. I already skipped tutoring Tuesday because of my toothache, so I really need to go today for the makeup. Then I assume I will head back to Holyoke to see my favorite dentist.

When life gives you lemons...

Well last night I made applesauce. I threw in some strawberries, and it was actually very tasty.

Here is another silver lining.

I went to Target to get the waterpik (much cheaper than CVS and since I don't belong to Costco, probably my best bet at this point), and saw some long-sleeved, very comfortable T-shirts similar to the ones I get at JJill, but waaaaay cheaper (only $12). I bought a nice black one that I am wearing now.

A good way to be "armed" for another trip to the dentist.


Thursday, November 7, 2013

It's always something

Those are the words of the day, spoken this morning by my dentist while he explained the screaming pain I have had in my tooth.

It turns out to be an infected pocket created not by the usual culprit – plaque buildup – but rather by my friend prednisone. I am only on four mgs. a day, which is where I need to be to keep the graft vs. host disease in my liver in check. But as my prednisone buddies know, the miracle drug can do damage in other areas. In this case the dentist said it's because I am losing bone in my jaw due to my compromised immune system.

He gave me a prescription for an antibiotic and told me to rinse twice a day with Peroxyl and to get a waterpik. The price of the first one I saw, at CVS, blew my mind. So, alas, an afternoon that I meant to devote to writing (other than this) will now be spent shopping in the rain, probably at Target.

This will help in the short term, but eventually I will have to see a periodontist for a scraping. Sounds like more fun than I will be able to bear.

Also (whine, whine, whine) my legs, specifically my quads, still hurt. I went to see Dr. Berger yesterday, and he said to apply heat and, if I want, go to physical therapy for some treatments. I can't get in until next week, though.

I did restorative yoga with Erin last night, and it was just what the doctor ordered. I didn't feel any pain the whole time, and even my tooth behaved.

Wednesday, November 6, 2013

Can cancer promote personal growth?

This week I learned a new phrase: post-traumatic growth.

It's pretty self-explanatory, but I didn't know that in the past 10 years or so it has become part of the lexicon in studying the after effects of cancer treatment.

Nick Tate, my editor at Newsmax Health, gave me a prompt for writing on post-traumatic growth and cancer when he forwarded me the results of a new study published in the journal Psycho-Oncology showing "positive personal growth" after breast cancer diagnosis in a small study group.

Other studies of breast cancer survivors – and one that I happened to find on bone marrow transplant recipients – also documented post-traumatic growth in various arenas.

I can relate, but you have to keep this kind of finding in perspective. A nurse gave me a button that I keep in my jewelry box. It says, Cancer Sucks.

And so it does.

A post on Cancer.Net put it well:

“It should also be noted that experiencing post-traumatic growth does not necessarily mean that the person has overcome the stressor. In fact, most people who report post-traumatic growth also report simultaneously experiencing struggles with their trauma.”

To read the full Newsmax Health post, click here.

Saturday, November 2, 2013

What to do about a quadriceps strain

I didn't complain much about leukemia, so people were surprised when years ago I could not stop talking about the plantar fasciitis that was keeping me from exercising and even walking. They said I complained about that heel pain more than I ever complained about leukemia.

Of course during my last hospitalization leukemia actually did keep me from even walking. But you get in a whole different mindset when you are battling cancer as opposed to when you are back on your feet.

So it is in the same vein that I have been complaining about the quadriceps strain that I got more than a week ago. This was after I had fallen at the lake and, thinking I was doing something good for myself, got on a bike at the gym. I rode hard for about 30 minutes and then got off and went straight to lifting weights. I had no idea that my quads were so weak, and within a day I felt the strain. The prednisone that I take daily contributes to the weakness.

Poor Joe has had to listen to me repeatedly say, "My legs still hurt."

I looked on the internet and found an entry on Everything You Need to Know About Quadriceps Strains. I read that these can take 10 days or more to heal, so enough with wondering why they still hurt. I got some Traumeel cream, a homeopathic remedy recommended by a friend who is a personal trainer. And I have not gotten back on that bike, although I did have a dream last night that I effortlessly got on my own bike and went for a nice ride.

I'm not supposed to take ibuprofen or any related pain relievers because they thin your blood, and I'm not supposed to take Tylenol because it's bad for your liver, and my liver already has enough problems to ferritin overload. I did pop a couple of Tylenol this morning so I could get to yoga, having heard  that stretching is good for these pulls.

I've always been good about stretching. I guess I didn't do it at the gym because it is not my favorite place, and I wanted to get in and out. Same thing for getting on and going as fast as I could right away. I know better that you have to warm up.

Once I managed to get to yoga, having skipped Thursday because my legs hurt too much, I was glad that I went. I am looking forward to taking a restorative class Wednesday night.

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.

Hilarious.

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."

Monday, September 30, 2013

Run your own race

I just read Julie Goodale's post on Fitness for Survivors about running your own race, physically and metaphorically.

A breast cancer survivor and ultra-marathoner, she was referring to her recent 100-mile race, in which she vowed to not compare herself to others. This is good all-around advice.

In that spirit, I will say that I ran one mile over the weekend – once around the lake – and maybe a little more because I went to and from my house. Over the weekend it seemed like every other runner was wearing a different colored St. Patrick's Road Race T-shirt. I dug through my drawers to find my latest one, from 2012. I wondered if I could do the race again. Maybe, maybe not.

In wanting to run, I am not trying to prove anything. My feet start on their own. My mind picks up a beat.

In other sporting news, I played my first round robin in months last night. I held my own. Some people hit it harder than I can, but thanks to George I can (sometimes) neutralize these strokes with spins and slices. Afterwards, some of us sat and talked. I had a delicious chocolate cookie with M&Ms.

The weekend was great. I had a special guest, one of my high school BFFs, Emily. We walked with friends (and dog), went to yoga, enjoyed coffee and conversation and had a candle-lit dinner party in which I took out my mother's silver.

And then last night, the "Breaking Bad" finale. It all came together so beautifully.

This morning, writing and cleaning up, then a walk. It's nice to have a 6-year-old dog who waits patiently in her corner of the couch while I get things done.

Thursday, September 26, 2013

Reflexology 101


I did something different today, going for reflexology at the Cancer Connection in Northampton.

I have been aware of the programs, services and support of this wonderful place, but more as a reporter than a participant. Obviously I knew during the past 10 years that I definitely was qualified to take advantage of the services that are free to cancer patients, survivors and their caregivers, but I continued to see myself more as an observer.

That changed when I told a friend that I had been curious about reflexology and was going to pay for a session, and the friend suggested I check out the free programs that are available. Here is a definition of reflexology:

Reflexology is a gentle thumb-pressure technique that stimulates nerve endings in the feet and hands, corresponding to various parts of the body inducing deep relaxation. This soothing massage of the lower legs, feet and hands, combined with Reiki, help strengthen the immune system, activate circulation and restore a state of balance and calm.

I'm glad I went. It was so relaxing that I feel asleep, though the benefits might have been undercut when I woke myself up with a coffee and a chocolate chip cookie at the Woodstar Cafe so that I wouldn't be sleepy on my errands for the rest of the day. Anyway, sitting outside in the sunshine was as relaxing as the therapy had been.

The Cancer Connection itself is a soothing place, with an inviting living room where I filled out forms. I will definitely return to do reflexology again or try such other complementary therapies as massage, acupuncture and Reiki.

Tuesday, September 24, 2013

Stinky dog tale

Yesterday was a good day in which my physical fitness continued to improve and I fulfilled my desire for yet another piece of black clothing.

A friend led me to the perfect black warm-up jacket that will go perfectly with my black tennis skirt and my black running pants. The combination of coffee, conversation and the purchase made for a very good afternoon.

I got back just on time for yoga, where I felt good.

Maddie got fed three times by accident, because when Joe saw the note "dog was fed" he took it to mean just in the morning, while I was trying to say that I had fed her a second time before I went out.

When sitting on the couch next to her after that, I said, in a playful tone, "You're going to get fat."

She got down and lay on the floor, her back to me. Obviously she didn't like being called fat.

When I took her out later at night, she rolled in something on the lawn. I told her to get away from that, and she came back in the house with me. I wasn't in the same room with her, so I didn't notice the smell until Joe came in and asked whether the dog had gotten into something.

It was after 11, and time to wash a stinky dog.

So we got her into the tub, and then she sat nicely while I washed the stink out. There was water, water everywhere.

I didn't get to bed until after midnight.

I bought a new collar today to replace the old one that I had to throw out.

This should be my biggest problem.

Saturday, September 21, 2013

Weekend update

It's hard to get back in the swing of things when you've been on vacation, but that's what I'm trying to do.

On Wednesday, I went to George's clinic outside at the Holyoke Canoe Club for the first time since my surgery. I actually held up just fine, with help from George, who said I was playing well, and from my tennis friends, who seemed glad to see me.

It's really fun to be there, with everyone joking around and not taking themselves too seriously.

I stayed for about two hours, with breaks in between talking to friends, enjoying the late-summer sunshine glistening on the Connecticut River just past the courts. Watching the U.S. Open reinforced the basics, such as following through and moving your feet.

I left before the final hour or so of play, thinking I'd be wise to quit while I was ahead. I went home to walk Maddie but didn't get very far. I turned back and crashed on the couch, walking her later after I had perked up.

Thursday I did some interviews for a story I am writing, and yesterday, after doing this and that, decided just as the sun was setting that I needed to go for a run. Joe asked why. I didn't know; you'd have to ask my feet. I went about a mile, walking up a few hills. It wasn't my first time taking a little run. Last week in San Francisco, I jogged along the bay while Nancy talked to her yacht club friends.

Today I returned to yoga, also for the first time. I told the teacher I might not do everything, but, with a little help from my favorite prop, the wall, I went through all the poses without any stress or strain. Then it was back to the couch for a long nap, me on my side and Maddie dozing on her side. Every now and then one of us would open an eye and look at the other, but we kept going back to sleep.

I had to get out of the house this afternoon to do some writing at the Thirsty Mind for an upcoming post on my Newsmax Health blog. If I am one of the world's worst packers, I am also one of the worst unpackers. I can't seem to get it done all at once. It's like when the kids come home from college. Suitcases explode all over the place. Besides that, bills are waiting to be paid. And as if I didn't have enough house-keeping to do, I decided it was time to remove all the half-used bottles from the refrigerator so I could clean it. The bottles are still in the sink where I left them

But better opportunities presented themselves. By nightfall, the rain had stopped, and it had gotten balmy. Maddie and I took our walk then.

Tuesday, September 17, 2013

Back to reality

After taking the red eye from San Francisco to Boston Sunday night, I basically sleep-walked through two appointments in Boston yesterday.

I started out at 10:30 by seeing Dr. Goguen about the spot on my tongue that she had been treating for a fungus. She said it had gotten smaller but was still there and offered me the choice of (A) two more weeks of "swish and spit" and dissolving a medicated lozenge in my mouth, or (B) getting a biopsy which would hurt enough to require pain medication.

I chose A even though the medication is gross. I need to go back in two weeks for her to check it again.

Then I walked from Dana-Farber though the connectors to Brigham and Women's, grabbing a bite to eat at Au Bon Pain and then going across the street to catch the shuttle bus to Mass General...and promptly falling asleep.

I woke up at my stop to cries of "Miss, miss!" – and an empty bus.

Next I saw Dr. Neel about the squamous cell cancer on my lip. He voted for taking it off with a Mohs procedure rather than possibly waiting around for a face fry. He said I'd only lose 1/10 of my lip, and he'd stitch it together so that after it heals, it would only look like a wrinkle.

Hip hip hooray for another wrinkle!

I especially dislike the thought of getting cut on my lip, so I'm already planning on taking an Ativan.

Actually, I'll be glad to get it done because it stings most of the time.

It was a beautiful day here, with our rolling hills starting to turn color. I loved San Francisco, but it is nice to be home.

Saturday, September 14, 2013

I'll leave my heart....

Japanese Tea Garden
I think I'll move to California.

In a packed day on Friday, I strolled though Berkeley, dipped a toe (OK, a sneaker) into the Pacific Ocean and drove through Golden Gate Park, stopping for a walk through the Japanese Tea Garden, followed by tea and treats.

On the way home, we took photos at the Golden Gate Bridge just as the setting sun cast the perfect light on it.

With views of the bay from so many different directions it is just simply intoxicating.

Wendy, Nancy and me at Ocean Beach
In front of the golden icon
Today we had Dim Sum in Oakland's Chinatown, walked in the woods and finished the day with the San Francisco happening, Beach Blanket Babylon, the longest-running musical revue in the country.

With wigs to die for, this up-to-date satire melds pop-culture figures with show tunes, capturing the San Francisco spirit like nothing else.

Check it out:


Tomorrow we're going to Nancy's yacht club to watch the Americas Cup and then to Muir Woods, followed by dinner in Sausalito...if we can fit it all in.

I doubt I'll have trouble sleeping on the plane home tomorrow night.

Friday, September 13, 2013

San Francisco sightseeing

With my cousin Wendy Fitch
Our San Francisco tour yesterday started at City Lights 
Bookstore, the literary landmark founded in 1953 by poets
Lawrence Ferlinghetti and Peter D. Lawrence.

My cousins Nancy, Wendy and I continued on to walk through the North Beach area, having lunch at a wonderful Italian restaurant followed by cappuccino at CafĂ© Greco, which the former policeman sitting outside assured us was the best coffee in the area.

Then we walked through Washington Square to Telegraph Hill, climbing the 378 steps (plus or minus) to Coit Tower, a 210-foot tower built in 1933, with frescoes capturing the working life of Californians.

Luckily there were handrails most of the way up, and for the other parts, one of my cousins offered an arm. Then we walked down the 397 steps, through the treetops.

Below Coit Tower
We wound up on the Embarcadero, the piers along San Francisco Bay including the sections where the Americas Cup is happening. (Nancy is going to take me to her yacht club Sunday to watch it!)

We definitely got a lot in. It was a great day with sweeping views, good food, interesting sites and a lot of catching up. And at night, I wasn't tired at all!

Today we're going to Golden Gate Park. And tonight I'll continue my admittedly scattershot but sincere observation of the High Holidays by going, California-style, to services at the Acquarion Minion, a Renewal congregation near here.

Photo below is our view of the Bay Bridge and the San Francisco Ferry Building from Coit Tower.

Wednesday, September 11, 2013

Made it!

The Berkeley Marina
The California jinx has been broken.

I arrived safe and sound at the San Francisco airport today after half-wondering if I would get here.

Looks like the third time's the charm.

I had been to California many years ago, but things did not work out well in the first more recent attempt. That was in 2007 when I had bought airline tickets and made hotel reservations for the kids and me to visit California. I relapsed and went to the hospital instead.

Then in May, when I was supposed to go for my cousin Nancy's 60th birthday bash, I ended up back in the hospital with pneumonia.

I'm so glad that I finally made it.

I'll be spending time with cousins, catching up and seeing the sites. Today I stopped in to say hi to my cousin Nancy's son Jeremy, who works in a restaurant at the Berkeley Marina. What a beautiful place. It's 9 p.m., but my body thinks it's midnight, so I'm f-a-l-l-i-n-g a-s-l-e-e-p.....

Saturday, September 7, 2013

Going here and there and back again

Katie, me and Ben at the 92nd St. Y
Happy 5774 to all of my Jewish friends. Here's to a healthy New Year filled with all things sweet.

In a whirlwind trip to New York, I dropped off round challas to various people. Before leaving,  I cut into one with Joe. We said the traditional prayer, and I thought as usual of my father with his large hands cutting the challah at our family gatherings in New York and wishing everyone a year with no sharp edges just like the challah.

On Wednesday I drove to Fairfield, leaving my car there and taking a train the rest of the way. I brought a new small suitcase and managed to toss it into the overhead, although it landed precariously on its side. Once at Grand Central, I maneuvered through the crowd, and then, thinking it wise to get a taxi instead of going up and down more steps to the subway, I went outside, only to discover that this was not an easy task since it was rush hour and the night before Rosh Hashanah, when a good part of the New York population was trying to get somewhere before sunset. Finally I did get a cab...and had one of the longest rides I can remember.

After getting uptown to Jeanne's and collapsing into a chair, I thought for a minute that my fatigue was suspicious and that I needed a blood test. But I stopped that one in its tracks. There was a reason for being tired.  Duh.

Katie came later, and we spent the night at Jeanne's. In the morning, we went to services at the 92nd Street Y as usual, meeting Ben there. I enjoyed listening to Rabbi Jen, who has been dubbed the coolest rabbi in New York. When she asked for a show of hands of people who had attended services there for at least two decades, I was among them; actually I grew up at the Y, having started there at nursery school. When I am there, I feel my parents around me.

After our traditional lunch at the Three Guys restaurant on 96th Street, we walked down Fifth on a beautiful day. I decided I didn't need a blood test after all. Then Katie and I took the train to Fairfield. I tried to show how well I could hoist my suitcase, but if the window had been open, it would have flown out of it. Katie to the rescue.

We picked up my car, drove the rest of the way home and turned around this morning and went back to Brandeis, and then I drove back home. It kind of makes my head spin. I had intended to participate in the Jimmy Fund walk tomorrow in Boston, but it would have been too much.

Thanks to everyone who contributed to the walk. I am going to be a "virtual walker," meaning that I will contribute the money I raised and will be there in spirit.

And I still get a Heme Team T-shirt.