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.