Saturday, May 31, 2014

A trip to the dentist leads down memory lane

My local dentist, Dr. D, seems to feel protective about my teeth, saying at my last visit that he didn't understand the point of me seeing the Brigham and Women's dentist specializing in transplant patients, because he didn't know what else that dentist could tell me.

I like my local dentist, and he is in the process of giving me a very nice bridge. But Dr. Alyea really wanted me to check in with Dr. Treister, so that is what I did yesterday. He turned Dr. D's theory on its head. My problems are not due to prednisone (here I have been blaming it all along) but rather on salivary gland changes during chemotherapy that resulted in a dry mouth.

It is a moot point now, because Dr. Treister said my mouth and my remaining teeth look OK. He also said the area on my tongue where pre-cancerous cells were removed looks fine. But he did prescribe a fluoride gel to apply at bed and also yet another cream for my burning lips.

The local vs. Boston complex brought to mind a time when I went to Holyoke Medical Center by ambulance after falling backwards onto a sidewalk. (This was not a trip-and-fall. It resulted from dehydration and unbalanced electrolytes.) The doctor in Holyoke didn't even want to check in with Dr. Alyea at Dana-Farber, but after I insisted and the call was made, all of a sudden I found myself in an ambulance headed for Boston.

I had a little extra time yesterday, so I went up to the sixth floor to see if any of my nurses from 6A
were around. I always pause in front of the sign to the unit, which is for transplant patients needing the most care. Do I really want to go in? But I take a deep breath and proceed.

They always say the same thing: "We don't recognize you with hair"!

But yesterday there were hugs and smile all around. I am buoyed by the memory of their kindness. And I figure they like seeing the result of their good work.

Friday, May 30, 2014

In and out of the deep freeze

No, I'm not referring to the polar vortex, but rather to the freezing that was done to spots on my face and hands yesterday.

I was relieved to find out at my dermatology appointment yesterday that none of the spots needed biopsies, but it was an unpleasant visit nonetheless. The idea is to get rid of the spots so they don't turn into cancer, and to that end Dr. Lin found 23 areas that needed treatment.

I know the exact number because the resident who did the job counted them up after she was done. Usually Dr. Lin does it, but yesterday she handed me over to the resident, saying to give me a "hard freeze" because she knew I could take it.

So the resident zapped and zapped again. She was very nice and kept stopping to say she was sorry. The worst one was the area on my lip that continues to bother me. When she was finished, my face looked like it had a bad sunburn. But it's all good if it keeps more squamous cell cancers from coming up.

In October, I will return for the deep fry, a.k.a. photodynamic therapy, or PDT, in which I basically get a layer of skin burned off my face. But as I said, anything to keep cancer away.

Thursday, May 29, 2014

Pet behavior modification 101

Maddie and I had an excellent visit with pet behaviorist Kelley Bollen in Northampton, and I feel confident now that we can stop her from being aggressive towards little dogs and also stop her from pulling me.

The first step is getting her to use the gentle leader, which is the only way to have total control. I did this totally the wrong way with my crazy golden retriever Charlie when I tried to force it on him and he would get it off and chew it to pieces in seconds.

It is a step-by-step process of desensitizing her to the head collar through getting her to accept it by offering her food when she sticks her nose through the loop. Being a lab who will do anything for food, she caught on quickly. Yesterday I kept it on her while she licked peanut butter from a spoon, getting her used to keeping it on longer. Today I kept it on her while she ate breakfast.

We also practiced changing her response to smaller dogs. Kelley brought out a stuffed animal that looked like a small yellow lab, and Maddie lunged for it. (Apparently they all think this thing is real.)
We tied her to the door, and I practiced giving her little treats while she looked at the dog. So if we see a small dog while walking around the lake, supposedly I can change her association by giving her a treat whenever a little dog comes along.

After I get her used to wearing the collar in the house, I'm going to take a walk with Kelley in Northampton to see how it's done.

This sounds more promising to me than zapping or shouting or trying to strong-arm her. I wish I had used this positive reinforcement when trying to tame Charlie. A trainer who came to the house said that he was way too alpha, and she told me to assert myself as alpha by actually lying on top of him on the floor, which only made him madder...and ended up leading to him attacking me.

The hour with Kelley cost $95, and I think it will be money well spent.

Sunday, May 25, 2014

Good day sunshine

I went plant shopping today at Andrew's Greenhouse in Amherst, a beautiful place to spend part of a sunny Sunday afternoon.

It is so pretty there that I wanted to buy everything. The shoppers and the people working there are all incredibly calm, and it is a nice place to walk around, especially compared to hectic garden centers on Route 9.

I really missed my mother. Planting the garden was one of her favorite things to do, and if her garden at Atlantic Beach was in order, she often came here on Memorial Day weekend to shop and plant with me.

Afterwards I made my first visit of the season to Breezy Acres and was happy to see Evelyn's smiling face and my favorite, sour cream coffee cake. I was so happy that I bought two pieces, one to have with my coffee this afternoon and one for breakfast tomorrow.

It was a good antidote to yesterday's craziness and to the pain I had last night when I couldn't sleep on the side with the softball-sized black-and-blue mark. It hurt enough that I couldn't go back to sleep without taking something. If I had followed doctors' orders, I would have taken oxycodone, and although I'm fine taking it in the day if I need it, I don't like the way it disrupts my sleep.

Instead I took one regular-strength Tylenol, reasoning that such a small dose couldn't hurt my liver.

Maddie was the perfect dog today, walking quietly beside me on her leash. When she pulled just a little to head towards a little dog, I took her by the collar and told her quietly but firmly to sit. She did as told, and before we got back on our way, I told her she was the best dog in the world.

She likes some little dogs, and I wasn't sure if she wanted to play with this one or be nasty. But I wasn't taking any chances.

Farm in a wagon (not for sale).

Saturday, May 24, 2014

Bad dog, weird people

I know, I know...

There is no such thing as bad dogs, only bad owners. Or is it that, as one editor told me early in my career, "There is no such thing as a bad story, only bad reporters"?

Well maybe it's both, but in this case I am talking about my usually sweet dog, Maddie, who seems to suffer from a lack of impulse control. This has come up before in terms of her lunging and barking at little dogs, but never has she pulled me down.

Until today, that is. I have done an excellent job of staying on my feet, but my streak was broken this afternoon when I was walking her on the Mount Holyoke campus. A dog was poking its head out of the window of a car driving by. Maddie yanked on the leash so hard that she pulled me down and I hit my side and then my head. She got loose and just missed getting run over. The next thing I knew she was just sitting beside me while I lay on my back.

A man got out of the car with two children – not little ones – and asked if I was OK because he saw me hit my head. I said I was, but I clearly wasn't. Instead of coming over, he just said in a monotone, "Someone should help her up. Someone should help her up." He clearly couldn't be afraid of the dog who, as I said, was just sitting there. The kids were big enough to help, but they didn't move either.

It is reunion weekend at Mount Holyoke, and three women wearing the traditional white dresses approached. Two just stood there. The third, an older woman walking with a limp, said, "Someone should help her up." The other two looked at me and walked away, leaving the third to try to help me up. Finally I rolled over onto my hands and knees and got up...looking at the backs of the women so engrossed in their conversation that they could not be bothered.

Meanwhile my new friend walked me to the nearby art museum, where I tied the dog up outside and went in to get a tissue for the blood dripping down my arm. She was as upset as I was about the others walking away.

I thanked her for her help and hobbled home, where I iced the immediately sore bruise on my thigh. My eyes were welling up with tears, and Deborah could hear it in my voice when she called to ask if I wanted to come over for cake and coffee. So she got berries too. That made me feel better, but still...

On Tuesday, Maddie has an appointment with a pet behaviorist.

Friday, May 23, 2014

Fun in the dentist's chair

When I don't get around to putting my pills in their little boxes, I end up fishing for them in the bag where they have lived for years.

This is all well and good except for days like today when I am in a rush. I worked most of the morning on one of my Mount Holyoke stories and was cutting it pretty close for getting to the dentist's appointment where I would get the long-awaited bridge.

I am down to about 12 pills in the morning. I dropped them one by one into a cap that I had turned over. One pill here, two pills there, etc. I picked up two little white ones and was just about to pop them into my mouth when I realized they were a little large for my daily prednisone and were in fact two milligrams of Ativan.

"OMG!" I said to no one in particular.

I would have been fine getting there, and it actually might have made it more fun to go through the commotion in my mouth as the dentist shot me with a ton of novocaine and then drilled and glued. As it was, I had enough distraction watching the ladies on "The View" drool over the actor Don Johnson and listening to them pose the question of which had a greater pull for women in marriage, love or lust, and which was the greater reason for divorce, lack of love or lack of lust or too much lust.

I think my dentist was weighing in on this, but I couldn't hear him over the drilling.

Getting home on two Ativan would have necessitated a call to Joe, but as it was, I walked out fine on my way to get a prescription for an antibiotic and for oxycodone to deal with the expected pain.

The bridge is just temporary, and I need to go back in two weeks for another appointment.

But in summary:

Come see me smile!

Watch me chew!

Wednesday, May 21, 2014

Celebrating graduation times six

Me and Ben, 2003 
In a photo taken of me with Ben at his high school graduation in 2003, I have a scarf on my head and a smile on my face.

The scarf is because I was in between chemotherapy rounds, and the smile is because I got to that  graduation in the first place. When I was diagnosed with AML earlier that year, I was afraid I might not make it.

Through the ups and downs of my battle with leukemia, I was shadowed by uncertainty. The way things go, much of this uncertainty gets crystallized around major events such as graduations, the main question being, of course, will I live to see these special days?

Katie and me, 2014
It turns out that as of Katie's graduation from Brandeis on Sunday, I made it to three high school graduations and three college graduations.

Sunday was a wonderful day of celebrating Katie's success, and also, under a bright blue sky, of celebrating having gotten this far as a family.

One of the first things I did when I came down out of the clouds was to e-mail a photo from graduation day to my care team at Dana-Farber, thanking them for making it possible for me to see this day.

I also e-mailed Denise, my donor and life-saver, and thanked her too, because all the brilliant doctors in the world could not help us transplant recipients without the generous gift of life from our donors.

Friday, May 16, 2014

Crossing the Bridge of Hope

The Bridge of Hope
On a day like today when I have appointments at Dana-Farber and at Brigham and Women's, I get a lot of exercise going back and forth over the bridge connecting the two.

So it was today when I had an x-ray and ultrasound in the old Dana Building and a GI consult at the Brigham.

The two appointments brought to mind the fact that five years can seem like a short time and a long time.

Being in the old building brought back memories of my first appointment there, of my bone marrow biopsies there, of the appointment where I learned of my first relapse and of the many hours spent in the close quarters of the waiting room.

I've had tests downstairs in the imaging suite before, but sometimes it just hits me, like it did today when I hopped up on the table, how at one point I had to be wheeled on a stretcher to tests like this and could not possibly have moved over to the table on my own.

The ultrasound technician scanned the lump on my thigh, checked out the results with a doctor and quickly returned to say that the area is merely a calcification, located, perhaps not coincidentally, under the scar from where my crazy dog Charlie attacked me.

Walking over to the Brigham across the Bridge of Hope, I almost always draw the distinction between the present and the past when I was either in a wheelchair or pulling an IV pole. The motif of birds carrying medicinal herbs was inspired by the Emily Dickinson poem, Hope is the Thing With Feathers, making the bridge such a peaceful place.

The GI specialist, Dr. Lo, meanwhile, said my problems probably stem from my Graft vs. Host Disease of the gut, diagnosed in 2009.
Dr. Daniel J. Deangelo with patient

I had totally forgotten about this, and nobody ever mentions it. I thought I only had two areas of GVHD, my liver and my eyes. Dr. Lo said it didn't really matter, because the treatment for all is the same: prednisone.

But there are still some unanswered questions, so he ordered more tests.

On the way out at the valet parking cashier level, one wall is covered with photos of Dana-Farber doctors. I always say, "Hi, Dan," to the photo of my first doctor, Dan DeAngelo. I don't get to see him that often since I have switched to Dr. Alyea, but I am always happy when I do.

So today I took a picture of his picture.

Thursday, May 15, 2014

Checkups galore

Checking and testing.

Testing and checking.

Just to be sure.

Just because I have a three-month gap in my regular checkups with Melissa and Dr. Alyea, doesn't mean I have a break from appointments. They are keeping me very busy. It shows how vigilant they are.

But still.

Here's what I have so far for May and June.

In Boston:

Tomorrow, X-ray and ultrasound of lump on my thigh. Probably a fatty cyst. Just checking. To be sure.

Later in the month:

Appointment with Dr. Lin, the dermatologist, to check on new thingies on my face. (Possibly more in-situ squamous cell cancers.)

Appointment with Dr. Triester, dentist specializing in transplant issues, to discuss and possibly do something about the rotten condition of my teeth.


Appointment with Dr. Debian. (Kind of off topic, but since it's for getting my long-awaited bridge I am including it.)

Bone density scan, again for trying to figure out what's up with my teeth.

Blood draw: Because I have three months between check-ups in Boston, do this in a month and a half locally. To be sure.

Ophthalmologist appointment to dilate eyes because specialist in Boston does not do that.

Completed: Checkup last week with Dr. Alyea at Dana-Farber and visit with ophthalmologist Reza Dana at Mass Eye and Ear to get update on Graft vs. Host Disease of the eye.

I'm probably leaving something out, but you get the idea.

Wednesday, May 14, 2014

Can music cure cancer?

After getting several comments about sound healing as a way to treat, or even cure, cancer, I looked into the topic and found that there are hundreds of entries about this topic.

This type of therapy uses the vibrations of a human voice as well as objects that resonate — such as tuning forks, gongs, crystal singing bowls, Tibetan bowls and didgeridoos (a rhythm instrument crafted by the aboriginal people of Australia)— in an effort to balance a person’s system

I wrote about it on my Newsmax Health blog, and you can read the rest of it here.

Friday, May 9, 2014

A day at the doctor's

Prednisone bottles, past and present
Just as I had hoped, Dr. Alyea's first words to me yesterday were "How's your tennis game?" signaling that there was nothing more serious to discuss.

My counts were good: White normal and platelets and hematocrit just a little below normal. I always look at the platelets, which were so slow to come back. Now they are at 114 out of a normal range of 155-410. My liver enzymes are OK too, so I can now go down to 2 mgs. of prednisone a day, from 2.5. I reached into my collection of pill bottles and was happy to pull out the 1 mg. bottle as opposed to the 20 from when I had to take two of those a day and got all puffed up.

I have been on this drug for five years now. While it fixes, it also messes up; i.e. it is good for the Graft vs. Host Disease of the liver but bad for the teeth and muscle strength.

I do have some homework, meaning more appointments.

Primarily Dr. Alyea wants to look into why I have lost so many teeth. I need to set up a bone density test and make another appointment with Nathaniel Treister, the Brigham and Women's dentist specializing in dental care of transplant patients.

And just to keep me busy, he wants me to get an ultrasound and x-ray of a little bump that has been on my leg for about a year. He said it's probably a fatty thing but they just want to get a better look. Sometimes they remove these things or sometimes they just let them be.

I told him I had thought of wearing my tennis clothes – including my new sneakers with their glow-in-the-dark yellow laces and soles – and he said he actually would have liked that. I didn't have the nerve, however, so when I raced to Enfield to get the tail end of George's clinic, I lost a few minutes changing. I felt like a maniac, pulling off my patent ID bracelet and the wrap over where my blood was drawn, but it seemed like a good kind of craziness.

I only got in about an hour, but after a day at the doctor's,  it felt like a good thing to do.

Thursday, May 8, 2014

In Boston for checkups

I didn't know that I have Graft vs. Host Disease of the eye until my Boston ophthalmologist told me yesterday that it was responding well to the Restasis drops I have used for the past year.

When I saw him a year ago with dry eye symptoms, he said it was hard to tell if I actually had GVHD  or not. So I used those prescription eye drops (kept in the refrigerator so they don't sting too much) and supplemented with an over-the-counter gel. Yesterday the doctor said to increase the Restasis to four times a day because, although it is at a low level, there are signs of a little more GVHD. WHATever.

It was a long day. First I did my mini-run and then drove to Diane and David's, where I parked and took the T downtown to Mass Eye and Ear. I was seen about 4:45 for a 3:15 appointment. At least I had my New Yorker and the New York Times. Then I reversed course and came back. Diane made a good dinner of salmon on the grill – my first grilled meal of the season. Always extra tasty.

This morning I have my regular checkup at Dana-Farber with Dr. Alyea. It's my first visit in two months, the longest time between appointments in five years. I hope I get in on time for my 10:30 appointment, because I have my tennis stuff in the car and would like to get to Enfield for our 1 p.m. clinic. The way things go over there, that is probably just wishful thinking.

I'm not worried about the appointment, but in keeping with the theory that you should never let your guard down, I'm going to withhold judgment until he asks me how my tennis game is and then I'll know everything is OK.

Wednesday, May 7, 2014

Computer wiz am I

I am smarter than I thought I, that is.

Usually when I have a problem I run to Joe with my computer. Lately I have realized that what he says is true: If you google it, you will find that for every question you have, many people have asked it before, and you will usually find the answer if you look. Sometime I can't even articulate the question, so Joe usually figures it out or if not, I take my computer to the geniuses at the Apple Store.

Yesterday at the Literacy Project, where I usually tutor in math and English, Michelle asked if I would help someone get an e-mail account and sign in to his Dunkin Donuts rewards program. My only obstacle was re-learning how to use a PC and also trying to find him a user name since his whole first name, middle name and last name were already taken. (A double?)

I was struggling to get things to happen, so I asked another tutor if he could figure out what I was doing wrong. "Left click," he said. I had been hitting right click, right click, the way you do it on a Mac. It took a while to remember how to do it the Mac way, and it was hard for my little brain to reverse it.

So after a few tries he did get his e-mail address and the card that would enable him to get his next coffee free. Big smile.

Next I took a computerized tour of West Palm Beach apartments with a Puerto Rican immigrant who might want to move there. We found three really nice ones, and he wrote down their phone numbers. He said his next step was to buy a computer, which he was going to do at Walmart. I showed him that the prices were the same at Best Buy, where he could take advantage of sales and better service.

Then we went to a map and I showed him the location of the closest Best Buy.

He seemed very satisfied with all of this.

I was happy to be able to help some people.

Tuesday, May 6, 2014

Summer league, here I come

I am now officially a Paper Doll, thanks to Carol Constant who invited me to join the summer tennis league out of Holyoke.

This is a no-pressure league which I think will be good practice for rejoining my regular team in the fall. The women, some of whom I know through Sunday night tennis at Ludlow, are all very nice.

Our practices at Holyoke High School are real urban tennis. Just as there is no crying in baseball, there is no complaining in tennis, but I do need to note that there are distractions galore, what with sirens, kids playing basketball and graffiti on the courts. But tennis if fun anywhere.

I got a taste of this growing up in New York. Sometimes we played at the beautiful courts in Central Park, but you had to make a reservation, and it wasn't always easy to get in. My friend Emily and I played in Lower Manhattan at courts where one time someone passing by tossed an empty bottle onto the court.

We just kept on playing.

Saturday, May 3, 2014

Back on the bike


Today I rode a bike.

Not such a big deal, you say, except that I have not been on a real bike in the two years since my crash. I was kind of afraid to try it again, a fear which was helped along by Joe's admonition, "I beg you, please, please don't get back on that bike."

I know that he and others were just afraid for my safety, but I really feel that my balance is good enough to ride on a flat surface away from traffic. I have worked on my quad strength through riding a stationary bike and through my recent foray into spinning. (Made it through three times already!)

I have had dreams when I am riding a bike with the breeze in my face. It's such a good feeling that you can't get through running. Well, at least I for one can't get it because I go so slowly.

I put my cell phone in my pocket in case of emergency, put on my helmet of course, and was on my way. I basically just went around the block, from my house and along Silverwood Terrace to the golf course and back. The point wasn't to get exercise but rather to test it out.

When Joe came home I told him that I had done it, and he said, "So you snuck out while I wasn't looking." Then I e-mailed Katie and she responded, "A bike ride?! How was it? Did someone watch you?"

I wrote back that I was a big girl now and I had done it by myself.

It was a little thing, but an important one in making me feel normal.