On sixth birthday, singing 'I'm Still Here'

When I looked back on my blog to this time last year to see what I had written about my important fifth birthday, or re-birthday, or transplant anniversary, I was surprised to find nothing.

I was having a hard time: hospitalization for urinary tract infection, toothache from hell, something suspicious on my lip, and tongue burning so severely that I had trouble eating. Still, I posted this song, which I sang this morning in my kitchen from a much better place.

There were so many times when I thought I wouldn't be here.

I look back on that horrific snowy night when I had relapsed that last time, when Diane was driving me to the hospital, and I slumped down in my seat and all I could say was, "I'm never going to see my grandchildren." I don't know why I picked that, because there were so many other things I thought I would not see. I guess it was my way of saying I would not have a future.

I remember one of my first appointments post-transplant when the kidney doctor told me he would see me in four months and I was surprised and also comforted that he thought I would live that long.

And now it's been six years.

Thank you Denise, thank you Dr. Alyea, Melissa and Dan (Dr. DeAngelo) and Mary Lou and the rest of Dana-Farber, thank you family and friends, thank you everyone!

This morning, I wasn't too happy that Maddie put her face on the edge of my bed and stared at me to get up early. But I am content now, looking out at my snow-covered back yard, drinking coffee from the "Tennis Nut" mug I gave my father and sitting across from a beautiful framed still life that my mother painted – a Lynne Gordon original.

Yellow tulips on the table, fruit in a bowl, and in a few minutes, blueberry pancakes that I am going to make for myself. A little more of the Australian Open left to watch. Last night, a fun tennis mixer with nice people and good pizza. Today, yoga, the New York Times and a good book. Friends and family to talk to later. A quick dog walk because it is in the single digits.

I so enjoyed singing "I'm Still Here" that I looked through YouTube and found another one, bringing back memories of a wonderful night when I went with my mother to see Elaine Stritch perform her one-woman show. This one's for you, Mom. I know you're around here someplace.

Walking the way I walk

Someone was saying I walk funny: stiffly and almost like I am on shards and trying to hold myself together.

People mention this frequently, mostly out of concern as in "Are you all right?" but sometimes it sounds critical, which is probably just my thing, but it does occasionally come out in a tone that makes the question sound like, "What's the matter with you?"

I told Joe and he said let that person have leukemia three times (not to mention the coma, which I just did, thereby engaging in a pet peeve of mine by saying "not to mention" when I just mentioned it) and I am much better than I was a couple of years ago.

Someone who I briefly knew said I exercise too much and that he knew I was trying to keep my girlish figure, but still. Actually I am lucky to have my father's metabolism and so that although with age it is a little harder, my "girlish figure" (what a putdown) takes care of itself. This person said my gait was off. So it is. But did I ask?

I do the work like fitness classes because I have to do it to maintain my strength and the balance that I have, which is not the same as it was before cancer but not nearly as bad as shortly after my transplant when by all accounts I walked like a Gumby doll and people were afraid that I would fall over, which I frequently did.

 Maybe some day I will like these classes, but at this point they are a chore, although the Pilates class  at the Hampshire Regional YMCA is just perfect, and I wish that it was offered more frequently, and also the yoga class the Justine teaches at Serenity Yoga is wonderful too, and she always makes sure that I get a wall.

Did I say that the other day I squatted to get a pot out of the low cabinet and toppled over onto the tiled kitchen floor? Did I say that I lost my balance in my bathroom and scraped my arm? Did I say that even with the Neurontin, the neuropathy from chemotherapy causes me to never totally feel my feet on the ground?

I hate to think of what I would be like without all the exercising I do.

When I first got back to tennis (again), I was not so great due to these problems and also the weakness in my quads from prednisone and my lower red blood cell count.

But now that is normal and my endurance is good.  Now when I am on a tennis court, the tentativeness goes away, and after we play for our allotted time I could just keep going.

It is like someone with a stutter who sings, and that stutter goes away.

If only I could carry a tennis court around with me...

Lucked out with some bad ideas

Here are some things I did but maybe shouldn't have done which luckily ended up being OK anyway:

1. Pull a chair over to the smoke alarm at 4 a.m. when it was making the "replace me" beeping sound and stand up on that chair, at the top of the stairs, then yank the smoke alarm off the ceiling so I could get back to sleep because Joe wasn't home and it was a new kind of smoke alarm with a battery that does not come out easily and I could not get it out without taking the while thing down.

Here is why it was difficult: Thankfully I can do many things now, but the muscles in my quads are are not strong enough to climb up easily onto a chair. (Similarly I have noticed that the hardest part of going swimming at the Y is sitting down on the edge of the pool without flopping down before getting in...I had a dream that I dove in, but I don't think I can do that any more.)

Here is why it was silly: Not only could I have fallen off, but I could have fallen down the stairs. Perhaps I should have gone downstairs and slept on the couch.

I shared this with my friend Chip over our traditional eggs and bagels, (actually English muffins because the bagels were all sold out due to pre-blizzard rush), and he said he might also have done something like that and would have had a hard time explaining it to the doctor in the emergency room. Speaking of the emergency room...

2. Although Melissa had said to go to the ER because I had not kept anything down for several days, perhaps I did not need to call an ambulance even though Joe was not home. I told a friend I had called an ambulance and she said I should have called her. I forget that other local friends would do the same because after I called one friend for this kind of thing a couple of times, that friend seemed put out. Also Joe would understand if I threw up in his car (which I did one time into a plastic bag with holes in it!) but I don't want to risk it with friends. I guess I could take a plastic bag without holes.

3. Buy so much food for the #Blizzardof2015 which although it dumped about a foot of snow in South Hadley was not what it was cracked up to be.

I am wondering if I can still eat the chips and popcorn and cheddar rice cakes and if I can still make the cookies. Probably the answer to all of those is yes, why not, but probably wait to make the cookies until Katie comes home in March.

I miss my friend Patricia for many reasons including the fact that she liked to make lists and we could have compared ours because we loved to laugh together about our bad ideas.

'Writing your way to happiness'

The headline in a New York Times Well column on Monday – Writing Your Way to Happiness – could not help but grab the attention of a writer.

This according to Tara Parker-Pope:

The scientific research on the benefits of so-called expressive writing is surprisingly vast. Studies have shown that writing about oneself and personal experiences can improve mood disorders, help reduce symptoms among cancer patients, improve a person’s health after a heart attack, reduce doctor visits and even boost memory.

Now researchers are studying whether the power of writing — and then rewriting — your personal story can lead to behavioral changes and improve happiness.

(That link leads to a study involving patients with renal cell carcinoma whose cancer-related symptoms were reduced and physical functioning improved after a trial of expressive writing.)

Those who keep journals know the benefits of writing down your thoughts. Sometimes it helps you figure things out. Sometimes it takes the pressure off and you can let a thing go.

After reading the Times column, I rummaged through my hospital stuff from the bad old days and found my journal, in which I wrote big thoughts and little ones. I "told" the journal some things that I was reluctant to say. For example, a day still stands out in my memory when I dragged myself and my IV pole down for a walk on the Pike and went through an area where cheerful people were laughing and talking, and I could not stand the fact that they were so happy. After I described the scene in my journal, I could let it go.

In high school we wrote with fountain pens dipped in ink, on blank white paper bound in black. It felt very artistic. Given some distance when I looked at them quite a while ago I was so embarrassed about writing repeatedly about a certain boy that I THREW THEM OUT. I think there should be a law against ever throwing out your diary. I still have the little red one from fifth grade with the "fool-proof" lock, however.

Well you can't throw out a blog. Sometimes I'm not even sure why I have written it since 2008, but I keep on doing it.

 I remember talking about our blogs with PJ – she had two, The Plog and Word in the Woods – and she said she didn't even care that much if people read what she wrote; she just wanted to do it. And Ann, of course, wrote almost until the day she died.

Naturally a writer likes to be read, therefore I like people to read my blog. But I also get upset with myself for falling into the trap of counting "Likes" and comments, a common malady for bloggers except for all but the most confident, I assume.

I have from time to time thought of stopping, but I keep going because writing the blog accomplishes that interesting thing described in the Well column, while not exactly what what you might normally think of as happiness but something more like calm.

This mechanism is undoubtedly why there are so many cancer blogs, and actually so much written about cancer and writing, for example a program at Memorial Sloan Kettering Cancer Center in which patients work with professional writers to create pieces that are staged by professional actors.

Websites on this topic include Writing and Healing: A Mindful Guide for Cancer Survivors, with prompts to get writers started, although judging from the way that words seem to pour out of the people who write about cancer, that doesn't seem especially necessary.

Trip to the ER and back

Mom's chicken soup

While somebody in a bar somewhere was ordering a martini with a twist, I was in the emergency room asking for some Zofran in my IV to combat the nausea and vomiting from the previous few days.

I was tested and released without anything definitive showing up except obviously for a stomach virus.

When Joe brought me home Tuesday night I felt a little better and was able to keep down some Campbell's chicken rice soup, but then yesterday, after going to Whole Foods in search of something healthier and eating some of their "Mom's Chicken Soup," I got the worst stomach cramps.

Moral of this part of the story: I am sticking to the more bland version that my mother made in our galley kitchen in New York.

I thought I might get to tennis today to hit some balls in preparation for Saturday's match, but that was a no-go. Feeling a little better towards the end of the day and not wanting to totally embarrass myself after not

Cooked tennis ball, anyone?

playing all week, I practiced a drill that we have been doing at our clinics – bouncing a tennis ball and then hitting forehand/backhand as many times as you can, and then trying it as a volley.

But this was a no-go also, as you can see from the photo showing where the ball landed.

Meanwhile, I got an e-mail from Dr. Lin reporting that the "little guy" she removed from next to my left eye was not a squamous cell but merely precancerous.

This goes to show that although it is not always good to look at yourself too closely in the mirror, sometimes it pays off.

Sick

I am sick.

Just regular old stomach bug sick, 101, can't keep anything down, found myself lying on the floor the other night until I finally got up on the couch and stayed there until about 3 a.m. when I got the energy to crawl up to bed.

The only good news was that in and out of dozing and being sick in a bag I managed to watch the whole first day of the Australian Open before it went off the air at 3 a.m. So exciting to see Nadal back in good form and to see the Open season start. The bad news is that I got the worst crick in my neck and have it still.

Also Maddie is not too happy with me.

I am not entertaining her in the way to which she has grown accustomed.

Dermatology double-header

Now this is strange.

Last night I applied a steroid ointment to my thighs and abdomen and then covered those areas in plastic wrap. It sounded a little odd when my new dermatologist specializing in graft vs. host of the skin suggested I try it, but it actually was no problem.

So I have this late onset thing that has crept up on me, a hardening of the skin with a ripple effect. Right now it is just cosmetic, but the concern is that it could spread and hamper my movement. Great. So I go through all of this and then turn to stone. Pardon the hyperbole. The first step is to continue with the ointment and wrapping. I will go back in three months and re-evaluate.

Other options are more prednisone, to which we all say no.

There are other non-steroidal treatments including photopheresis, as I learned on this page about late effects after bone marrow transplant:

Extracorporeal photopheresis (ECP) is a promising therapy for chronic skin GVHD. In this procedure, blood is removed from your body, treated with a chemical and radiation to kill certain white blood cells, and is then returned to your body. The mild side effects of ECP include an intermittent drop in blood cell counts. Surprisingly, this treatment does not seem to cause immunosuppression and has the added benefit of being much less toxic than other treatments, since the exposure to radiation takes place outside of the body. The main drawback of the treatment is that it requires a substantial time commitment and several months of therapy before it can be determined whether or not it is effective. 

It would require a couple of times a week for those several months. I don't even know if they do it around here, and since it is time-consuming it would be a last resort.

The day before, Dr. Lin removed a spot near my eye for a biopsy. She calls my spots "the little guys." It had looked like a possible squamous cell to me, and she said it is probably that or precancerous. In the process she gave me a black eye. Well, actually a purple one on my eyelid. If I apply purple eye-shadow on the other side, I will be all balanced out.

We talked, and if that is possible, had a good time while she froze some other spots. She says I am tough.

I had a late lunch with my friend Rook, and thanks to good conversation, coffee and a molten chocolate cake, I did not get sleepy on the way home.

By the time I got to Jane and Jim's house to get Maddie, it was already about 7 p.m. I didn't expect to have much dinner, but Jim had made lasagna and had a plate ready for me. Jane had taken care of my children and now they both take care of Maddie and of me.

It is nice to have such good people around.

Tuesday

Tutor at the Literacy Project.

Go home and eat as big a lunch as I can because that is what you're supposed to do before the therapeutic phlebotomy that I get every two months to keep reducing iron overload from countless blood transfusions. Also drink more water to help "large-bore" needle go into my poor veins.

Go to Baystate Health for removal of unit (500 ML) of blood. Hope that finger prick shows my hemoglobin to be above the cut-off point of 11.3 because last time it wasn't and I was annoyed that they sent me home.

Take dog on short walk and finish story for Smith Alumnae Quarterly in which one of the students I interviewed went to P.S. 6 just like I did!

Resist urge to sign up for spinning.

Go home and rest up for tennis tomorrow.

The trouble with tapering

It is one thing to set out to cut back on my drugs that cause drowsiness, and quite another to accomplish it.

I thought I was doing OK cutting back on my Neurontin (gabapentin) from 1200 milligrams a day to 600, but it has snuck up on me, and I'm afraid I have to go back up. There must have been enough in my system for me not to notice the change, until last night when I woke up and realized I could not feel one of my feet. It was not your usual case of pins and needles. It was basically numb.

Also tonight I am noticing that my feet are both tingling and numb. They are never totally fine, but at least on the higher dose they were better than this. Dr. Alyea said I could experiment, so I think that I will start by adding one 300 mg pill instead of two.

I have tools for dealing with fatigue while driving – coffee, energy bars, fruit, and my favorite, Peanut M&Ms – not good for the condition of my car but good enough to stay awake, at least until I can pull over if I have to.

But if I can't feel my feet there is not much I can do about all my activities, and most importantly, keeping my balance. The typical dosage for Neurontin is up to 1,800 mgs. a day, so at least I will still be under that.

As I said previously, I have an appointment next week to see a new dermatologist about the graft vs. host on new areas of my skin, and I am also going to book with Melissa to check in and look at my medication list.

I could be wrong, but my squamous cell radar tells me that a spot near my eye might need to be biopsied. Each time Dr. Lin freezes it off, it comes right back. I emailed her asking if she wants the new dermatologist to take care of a possible biopsy but haven't heard back.

So far so good on the prednisone taper. Nine days in, and I am no more crazy than usual.

Weird happenings in the dentist's chair

I never know what to expect from an appointment with the dentist, given some two years of trauma: cancer scare on my tongue, surgery to remove abnormal cells, burning mouth syndrome, teeth basically crumbling in my mouth, root canals, 11 extractions, the toothache from hell, lying on the couch in tears, oxycodone that hardly touched the pain...

So I was on edge when I went today, and it didn't help when I thought the otherwise friendly hygienist said  "Shut up" while she was doing my cleaning.

 Figuring she wanted me to close my mouth a little more, that's what I did.

Again: "Shut up. Shut up."

Then I realized she was saying, "Chin up."

I told her what I had misheard, and we both had a good laugh.

Next, while looking into my mouth she turned her head away and exclaimed, "Oh no!"

This is the equivalent of a patient in a light sleep during surgery hearing the doctor say, "Ooops."

But then she said, "I forgot it's my husband's birthday today! I better get him a card."

There was more weird thing.

She didn't find any cavities.

When Dr. Debian came in and looked at my X-rays, he didn't see anything either.

I asked if he was sure they were mine.

But they were.

I am so relieved that the prescription fluoride toothpaste and gel have worked.

That, and time.

Salad days are over

Although the weather is more suitable to soup, yesterday I decided I would have a Big Salad for dinner.

I chopped up some vegetables and even added quinoa for protein. It was pretty as a picture.

But then I sat down and realized: I. Could. Not. Eat. It.

A little salad is OK, but after losing 11 teeth, I don't have enough left to manage a big one. This was frustrating. I've always been a salad type of girl.

On Wednesday I have a dentist appointment, and I might propose buying another tooth. Last year I purchased an AARP dental plan which is not good for much. It didn't cover last year's denture ($3,000 plus) but I think that since I have had the policy for a year, they might pay half.

All things considered, I shouldn't complain.  Forgive me for doing it just a little bit.

This month

January Wolf Kahn oil

God willing and the creeks don't rise, I will celebrate my sixth birthday at the end of the month (Jan. 31).

So I will be 6 while I am 60. An interesting confluence.

I have a break in regular checkups, but I still have two appointments. One is at Dana-Farber in two weeks to see a new dermatologist who will check out an increase in the graft vs. host disease on my skin. I am already applying a steroid ointment so I'm unsure what else there is to do other than increase prednisone, which is the opposite of what I am doing, but I will see what she says.

Also I need to schedule another therapeutic phlebotomy to keep chipping away at that ferritin level.

New Year's resolution, in addition to trying to like almond milk and kale, is to look more closely at the causes of the sleepiness that hits me when I am driving and that necessitates my pulling over for a 15-minute nap. I am full of energy and it only happens in the car, which is a cause for concern on many levels.

A friend with sleep apnea suggested that even though I don't fit the profile, I should look into a sleep study. But first I am going to ask Melissa to help me look into my meds, because several list dizziness and fatigue as side effects.

 "A Delicate Balance," the title of the Edward Albee play on Broadway, is about the balance of relationships among people, but it can also describe the balance of meds in a person's system.

I want to know: Where can I cut down to the lowest level and still achieve the benefits?

Because yesterday was my first day down to 1 milligram on prednisone, I probably won't do anything for a month.

Next up might be a closer look at gabapentin, which I take for the neuropathy in my feet. But alas, when you look up side effects of this drug, you also come upon gabapentin withdrawal symptoms, which sound worse than the side effects themselves. And like any other drug, it is worse the longer you have taken it, which for me is a long time, i.e. basically the whole six years.