Monday, March 30, 2015

Too much cancer before bed causes nightmares

It is important to be well informed about your cancer and also a challenge to strike your own balance of knowing just the right amount.

I am somewhere in the middle, wanting to know what I need to know but not any more. I used to talk about this to my friend Patricia, who knew everything, down to the which genetic mutation she had on which chromosome. Several times I thought of asking my doctor, but something always stopped me, and I am not sure why. It would not change anything.

Sometimes the universe (actually of course an algorithm on the internet) puts information in front of me. For example, the other day when I read the New York Times on line, a story headlined Trying to Fool Cancer came up under "Recommended for You." It was about the complexities of treating AML and a related blood cancer, myelodysplastic syndrome.

I’m sure it resulted from the many times my searches included the word cancer. The fact that it was my own former cancer was just coincidence. Still, it was strange. I read every word.

Which brings me to Cancer: The Emperor of All Maladies,  the three-part Ken Burns series starting on PBS tonight (9 to 11.) I am interested in watching it, but I'm unsure of how it will affect me.  Judging from the restless sleep I had the night I saw the preview, I decided to DVR it and watch it some other time at an earlier hour.

As I said then, too much cancer before bed is not a good thing.

Last night I disregarded my own advice. My Surviving Cancer post was due this morning, and since I had been busy with other work up until last night, I wrote it then. I focused on information overload.

I paid for it in my nightmares.

I dreamt a doctor told me even though I was done with leukemia, I had a different kind of cancer.

I needed surgery the next day and therefore could not eat after midnight. I was in a hospital. A nurse brought me food (horrible meatloaf!) which I was just about to eat when I caught the mistake after taking one mouthful. I was worried that I would not be able to have the life-saving surgery.

Switch to another dream-frame based on fact. The fact is that when I opened the car door in the driveway for Maddie to get out the other night, although she usually trots into the house, she raced into the woods after a deer that was running through. In the dream she caught the deer and got her teeth into it. I called for her to come back but she wouldn't move. Then an army of angry deer surrounded her, and...

I cannot even bring myself to write it.

I woke up and I did not have cancer and my dog was still alive.

Every time I take her out of the car now I put her on the leash.

From now on I am going to stick with my resolution of no cancer before bed.

Friday, March 27, 2015

Eating in the car, feeling like a real journalist

A funny post is going around headlined "15 Things You Have to Do Before You Can Call Yourself a 'Real' Journalist," and one of them is Eat in Your Car More Often Than You do at a Table, accompanied by the photo here. When I wrote for the newspaper, my diet was not as bad as the junk shown here, but my car was a mess from even eating things like salads while driving to and from assignments.

Well, it is feast or famine in the freelance business, and at this point I am feasting, working on three stories at once: one for HCC, one for Vassar and one for Smith. I like being this busy.

My car, never the neatest, is showing signs of having been snacked in too many times. I thought about this yesterday after eating a Kind bar in my car. A healthy enough choice but too crumbly. I was on my way to tennis from attending a class that I covered at HCC. It is one of the school's interesting Integrative Learning programs team taught by professors in different disciplines, in this case English and Science.

The class ended at a perfect time for me to get down to tennis, actually a little late, which is better for me at this point because as I discovered on Monday, a whole hour and a half is too much on my foot.

I thought I had caught all the crumbs by placing a newspaper on my lap, but little pieces of chocolate and nuts had fallen through and gotten mushed into my pants. Luckily last night it all came out in the wash.

Today I will bring an apple when I drive to Northampton to cover a Women's Leadership Conference at Smith.

This weekend, maybe clean out the car (and hopefully get the chocolate off the seat). Then I can start all over again. But perhaps no more Kind bars.

Wednesday, March 25, 2015

(Nurse) Friend for a day

Well, actually, she was only my friend for about an hour and a half, but she made my bimonthly therapeutic phlebotomy as pleasant as can be yesterday at Baystate Health, where we chatted away the time about this and that and touched on such important topics as my nurse Lynn having the same name as my mother, only spelled differently.

It was much better in the new location in a hospital setting as opposed to where it was formerly done in the blood donor center.
My nurse, Lynn Schwartz, and me

I had a bed and a nice nurse to sit with me, and although this is not a good photo of me, I am posting the selfie for fun.

(Note to grammar checkers: I double checked the most common use of bimonthly and it is every two months, although it can also but less often mean twice a month.)

I always felt out of place in the blood donor center, where through no fault of my own I am dumping blood rather than donating it like the good souls in the other chairs.

Plus, the nurses who I dealt with yesterday understood where I am coming from and took the time to reassure me by giving me a second finger stick when I was not happy with the hemoglobin count from the first one.

To back up: One time when I went to the donor center for this procedure, my hemoglobin measured 11. My orders from Dana-Farber required it to be 11.3 or above, so they said they couldn't do it. Also they seemed to forget why I was there, because the phlebotomist, when seeing the low level, said, "Good news, you don't have to be drawn."

I had carved out a chunk of my day to do this, and I asked if they would please recheck it because previously this had happened at the Kraft Blood Center at Dana-Farber and when they rechecked after I warmed up my hands, it was fine.

The phlebotomist made a big production, calling in her supervisor and even paging a doctor, who all said it was a good stick and they saw no reason to take the seconds needed to try again.

Yesterday the finger stick showed 11.4. It was high enough to draw, but although I know realistically that after six years I am safe, an aberration can still put me into a reflexive panic mode. Just a few weeks ago my tests at Dana-Farber showed a normal level, (12-something, in the low normal range of 12 to 15.5, but normal is normal) and I wondered how it could drop so quickly.

The nurse who had tested it yesterday let me run my other hand under hot water and sit on it for a minute or two, and viola`, "You'll be much happier this time," she said, because it read 12.2.

I could have had an extra-strength day by taking the Exjade in the morning, but I treated myself to a day off.

Lynn said to take it easy for the next 48 hours. I wondered if maybe I could just go Pilates today because that it not too strenuous. She said that actually it is, and I said, oh yes, the hundred...

Struggling to stay awake at the end of my short drive home from Springfield, I pulled into the Big Y parking lot in South Hadley to take a nap.

This morning, a cup of coffee and a piece of orange almond cake at the Thirsty Mind while writing a piece for the Vassar Quarterly helped pick me up. Twice around the lake and a walk through campus with Maddie and a friend saved me from following up on my notion that I should at least go to the pool.

Sunday, March 22, 2015

Harsh words that I said to myself

Sometimes a critical voice comes into my head, such as this admonition when I walked up the stairs to a Pilates class at the Hampshire Regional YMCA this morning:

"Walk like a normal person."

Somebody was behind me, and I didn't want my slower pace to hold her up. I think I might have even mouthed the words or possibly even mumbled them. In any case I heeded them and walked up more quickly. I doubt it bothered the woman behind me. It was just bothersome to me. Not a problem in Northampton, although they might run you down on the stairs in the New York subway system. I am normal enough on the tennis court. Stairs are the last frontier.

Once in class I did well. I have caught on quickly. I even discovered another vertebrae in my back so that when lying down, I can touch more of my back to the mat, one section at a time.

After Pilates I rode a bike for half an hour, followed by a not too difficult decision on whether to lift weights or head to Woodstar before the Sunday morning crowds arrived. I chose the latter. Usually I bring my Sunday New York Times, but today, much to my annoyance, it was not delivered. I did get a paper: yesterday's, delivered today. I took my laptop instead.

I usually don't mind reading on line, but on Sunday, I like to spread the sections around and save what I want, usually the Book Review, for the next day or so.

I have had delivery issues before and am not alone in this for The Republican as well.

This is difficult for newspapers to control, but if they want to hold on to a loyal and dwindling print readership, they should devote more resources to figuring it out.

Friday, March 20, 2015

Should I stay or should I go?

Bill Rogers and me in Holyoke
"You don't deserve to wear the T-shirt if you don't finish the race."

I said this to myself while struggling to finish the Saint Patrick's Road Race that year when I ran it with leukemia without knowing I was sick.

With the 40th anniversary running of the race tomorrow, I am wondering first of all if I should run despite my injured toe and second of all if I can wear this year's T-shirt if I don't go.

It was a big accomplishment for me to run it two years after my first transplant and many times after that. I missed it last year due to a winter's-long spate of pain in my legs (probably from prednisone), so I was looking forward to it this year. My training was going as well as could be expected over the winter, with several four milers and a lot of spinning under my belt. I felt confident enough to register.

Then I hurt my toe. It has improved to the point where this week, I hit some tennis balls and felt OK. But I still feel twinges. Common sense – and my memory of getting a stress fracture the last time when I ran a race with an injured foot – dictates sitting it out. Especially since aggravating the toe would mean skipping even more tennis.

Just to see what is out there, I googled, "Can you still wear the T-shirt if you don't run the race" and came upon a post on headlined "5 Guidelines for Wearing the Shirt From a Race You Did Not Run."

The author writes that early in her running days, she learned the cardinal rule of race shirt etiquette: Never wear a shirt from a race you didn't run.

Later, her attitude changed, especially in certain situations.

Much to my relief, I found what I was looking for in case number 3, like so:

"You got injured or had other trouble during training and weren’t able to start.
If you unfortunately weren’t able to race it, I say go ahead and don the shirt. You trained for the race, and you paid for the goods. It’s not like  you stole a medal from the finish line!"
I'm glad I decided to pick the T-shirt up today because I met Bill Rogers, who won Boston and New York four times each and Holyoke twice. Rogers was signing his book, "Marathon Man," in the registration tent in advance of running the race tomorrow.

I bought the book, which I will read. I picked up the shirt, which I will wear.

As for the race, I'll probably go to yoga and save the toe and think about it for next year...God willing and the creek don't rise.

Wednesday, March 18, 2015

How not to start your day

How would you like to start your day?

(a) With a smile
(b) With a gulp of something awful, then a grimace and a groan.

You probably answered (a). I would chose that too, and on special occasions I do, forgoing (b), which is caused by mixing 5 tablets of Exjade in water, doing the gulp thing, and then, to do it right and thereby prolong the distasteful task, adding more water to absorb the little leftover pieces and drinking some more.

Then, wait 30 minutes while it does its work of removing excess iron from the body through a process called chelating in which it attaches to the iron and carries it out.

During which time, drink coffee (the wonder drug!) to mask the nausea.

I bring this up because although I no longer report my counts, which thankfully is very yesterday since most everything is where it is supposed to be, I noticed at my appointment Thursday that my ferritin had gone up, while the point of this battle is to make it go down.

It was 1832 (normal is 10-170) compared to about 1400 three months ago.

Melissa said that by taking the Exjade and getting a therapeutic phlebotomy every two months, I am doing all the right things. The number is influenced by other factors, such as graft vs. host disease, and we don't want to do any more for that because it would mean taking more prednisone.

All is well, though.

The timer just went off and I can eat my toast.

Monday, March 16, 2015

Too much cancer talk not good before bed

It was a pleasure to be back at the Academy of Music yesterday and see the beautiful theater full of people there to watch a movie, a reminder of old days.

It was actually excerpts from a PBS documentary based on Siddhartha Mukherjee’s Pulitzer Prize-winning 2010 book, “The Emperor of All Maladies: A Biography of Cancer,” produced by Ken burns and directed by Barak Goodman.

When I got the email invite from the  Cancer Connection, I just glanced at it and thought Burns would be presenting the film, as in introducing it, rather than presenting as in producing! But no matter, I was glad I saw the excerpts and the panel discussion that followed.

 I would have gone anyway to the free screening presented by WGBY in advance of “Cancer: The Emperor of All Maladies,” a three-part, six-hour documentary scheduled to air on PBS March 30-April 1.

I had read part of the book, but not all of its 571 pages. Friends had vetted it for me, wondering if, so soon after my last transplant, I would be disturbed by the subject matter.

The book begins with the author, then a young doctor, treating a woman named Carla with acute leukemia, a blood cancer which "still sends a shiver down the hospital's spine."

Sorry to stop in the middle of a sentence, but you can get the idea about why I didn't want to read too much of this. But it was fine seeing the excerpts now, especially the one featuring Emily Whitehead, the young leukemia patient saved by a pioneering therapy and still in remission three years later.

With all of this cancer stuff swirling in my head, I should have taken a good book or my New Yorker  to bed. Instead, I wrote about the documentary for my Surviving Cancer blog (to be posted tomorrow) and then I made the mistake of picking this time to ask Joe to do the long overdue job of turning of my mattress.

Pardon the change of subject, but it all relates to a bad night's sleep. Did you know that you should rotate your mattress every three months? This topic came up with Diane and David. I have slept on the same side for so long that I have made a little burrow for myself.

After Joe flipped it for me last night, I could not get comfortable. The bed felt hard as a rock. I missed my comfy spot. Plus he had needed to move the bed and night table. I didn't move them back, and due to this laziness I feel like my chi was disturbed.

Meanwhile, I considered placing my head at the foot of the bed to find my spot (like a dog does!) but that would have defeated the purpose of saving my mattress.

So tonight, a little feng shui in the room, and no cancer before bed.

Actually it's Better Call Saul night. Not exactly a prescription for a good night's sleep, but an excellent distraction.

Saturday, March 14, 2015

'Big girls' can cry

I am cavalier about these things: being biopsied, having little things shaved off my hands, getting squamous cell cancers on the skin, having the precancerous ones zapped.

They pale in comparison to what other people went through, such as Lisa Bonchek Adams, who died March 7 of metastatic breast cancer, or Paul Kalanithi, the neurosurgeon who died Monday of metastatic lung cancer.

Both died too young. Both wrote eloquently about facing death.

But people like me who are lucky to look at cancer in the rear view mirror need to remember (as I remind myself), that these "little things" are part of a continuum. It is understandable to be upset.

If not for the cancer, these aftershocks – thankfully more like tremors – would not happen.

I realized this when somebody said something to me and I lowered my head and started to cry. It was not such a big deal. But this was only a day after the zapping and biopsying. I had (have) a tiny hole in the middle of my forehead. I still felt the stings. I thought it was just physical but I realized it was emotional also.

Big girls don't cry, I told Katie on the phone.

Sure they do, she said.

She tells her kids that grownups cry too.

It is not a bad thing.

On with the day.

Thursday, March 12, 2015

Zapped, biopsied and honked at

As expected, today I got another biopsy of yet another possible squamous cell cancer, this one right in the middle of my forehead.

I know myself well enough now to NOT get in the car and drive back home and then half way there realize that the anesthesia has worn off and I wish I had stayed another night. I ought to be OK by tomorrow. But as for now, my forehead is stinging and also my hands where Dr. Liu, the dermatologist I saw today, zapped some spots.

I bumped into Dr. Marty, who always lights up my day, and after a hug asked him when he was ever going to let me off two drugs I am taking, Valtrex and Bactrim, to protect my immune system from invaders. He said to ask Melissa: 1 milligram is nothing, and he thought it would be OK. But Melissa said she and Dr. Alyea are the ones who are keeping me on because the prednisone and GVHD can both compromise the immune system. She said, though, that maybe I can cut back on the Valtrex. Even one fewer pill a day would be nice.

As noted yesterday, driving around here is dicey. Coming back to Newton Highlands from Boston today, I slowed down to turn off Route 9 onto Woodward Street. The driver behind me honked as though she had wanted me to whip around the corner, where, by the way, the sight lines are blocked by snow.

Diane says that people around here are just at loose ends.

Wednesday, March 11, 2015

Greetings from pothole city

I drove to Boston today loaded with reading material, expecting that I would wait for hours at the Mass. Eye and Ear Infirmary to see Dr. Reza Dana, but the hardest part was actually driving through the potholes and puddles created by all that snow.

This was a rescheduled appointment with the cornea specialist who was so backed up last time that I bolted after waiting more than two hours.  I actually had to only wait an hour today, which was not so bad. I was late myself because as I drove up to valet parking, where there was a long line, someone waved his arms and shouted to get a move on. It took me half an hour to get around the block.

Dr. Dana said my eyes look good, and the mild graft vs. host of the eye is holding steady. He wants me to increase my use of eyedrops, however.

Tomorrow I have three appointments. One is my regular checkup followed by two dermatology appointments with doctors who will luckily be on the same floor. I might end up with two biopsies:
 one of the determined "little guy" that is camping out on my forehead (blocking my third eye!) and another of the hardened and thickened skin – sclerosis – resulting from late-stage Graft vs. Host Disease.

This has to be followed because  it can spread to other areas and limit motion, as described by a frightening comment from a patient who said this on the National Bone Marrow Transplant Link site: "I can no longer stretch out my arms because of all the skin GVHD, and certain areas of my skin feel slightly numb."

I have been applying a steroid ointment which has not really helped, but still, I am jumping ahead of myself.

Makes a hurt foot seem pretty trivial.

Speaking of which, I have been good about refraining from any activity that includes pounding, but that has not been so good for my mental health.

The other day after I did my laps and started water jogging, I met a woman who was doing the same thing due to an injury to her leg. We "ran" together and talked, making the time go by much more quickly. We told each other we would remember each other's names because we both have a boy name. Hers is Lenny.

Lenny said she had hurt her leg while training for a marathon, adding that every time she got close to her goal, she got hurt. I told her that I had wanted to run the Saint Patrick's Road Race and was disappointed that I probably couldn't do it.

"It could be worse," I said, without elaborating.

Saturday, March 7, 2015

Bummed, but in a First World kind of way

I tried to do something good for myself and ended up doing something bad.

Not Bad with a capital B, just really badly annoying.

I put on my boot like I am supposed to do and then although I had a lot of things going on, I sat down for a brief meditation that I am trying to do every day. I found one that I like on line – free guided meditations offered by the UCLA  Mindful Awareness Research Center – and so I clicked on a 12-minute option and settled in.

When I opened my eyes in the semi-dark room I was not entirely with it. I got up, took one step, and...CRUNCH...I stepped on my glasses that I love so much and that have seen me through thick and thin. They broke in half.

I have been so careful with them, keeping track of them through all my hospitalizations, and I really have no idea why I put them on the floor. They mean something to me. Plus I get a lot of compliments on them and I love their look and feel.

Mark at Village Eye Care checked with the company to see if they make something similar, but all of the glasses are bigger now. The optometrist, Steven Markow, came out to see what was wrong. I remember buying them after my first transplant when I was so immunosuppressed that I had to wear a mask and gloves when trying them on. I couldn't see what I looked like, so he let me take a few home with me, and my friend Korby helped me pick.

Right now I am wearing my spare pair of wire-rimmed glasses through which I don't see as well.

Steven (I call him that because we are long-time acquaintances) said, "It's time for a change."

Me: "I don't want a change."

Him: "I guess you're a real New Englander."

No I just want the same glasses.

One of these days I hope to go back to contacts, but I am not supposed to do it while I am still on prednisone. I know, it is a First World Problem, and not such a big deal in the long run because I can afford a new pair. I placed the order yesterday, and honestly they don't look all that different.

In the meantime I might try some tape or sticky glue.

(Distant memory of sticky glue: little Joe finding it in the junk drawer and screaming, "Mom, I glued my fingers together!" Gotta be careful with that stuff.)

Thursday, March 5, 2015

Pool time

"Sooner or later we all end up in the pool." – Bob Chipkin

I can just picture my friend Chip saying this to me as we were leaving the newspaper and walking out to the parking lot.

It was years ago and I had been complaining that my plantar fasciitis was keeping me from all exercise except swimming.

I guess that is a recurring theme for me. Some people have an "achilles heel" in an elbow or knee that intermittently gets re-injured. For me it is my feet. Not plantar fasciitis this time, but rather the pain in my toe and the top of my foot.

While I waited the couple of weeks for the appointment that I had Tuesday with a podiatrist, Joe kept telling me to wear the boot. I tried a little but quit because Dr. Holt had said it wouldn't help much and also because I didn't think i't wasn't doing much for my toe.

The new podiatrist said it is tendonitis with a couple of other things going on; he suggested giving it two weeks and then coming back for a possible shot...and wearing the boot. Dr. Joe said what did I tell you.

Yesterday I went to the Northampton Y thinking I was going to a Pilates class, but the schedule had changed, and I didn't realize I had gone into a yoga class. I did the first few minutes on the mat, but when she switched to sun salutations I had to leave because I can't put any pressure on that toe.

 I went swimming instead, doing some laps and some water jogging, which feels silly but is actually difficult and good exercise.

 It is hard for "normal" people to understand this, but the hardest part for me is actually sitting down on the edge of the pool without coming down hard on my rear end. I have worked hard on those quad muscles, but I think that even though I am on a low dose of prednisone, my muscle tone remains diminished.

I walked back and forth, scoping out the side of the pool and looking at the ladder, wondering if I should just climb down. But that isn't so easy either. I wondered if the lifeguard was wondering what my problem was.

While I am sidelined maybe I should do some wall squats or even repeatedly stand up and sit back down in a chair to work on those muscles. In the distant past I would just dive right into a pool. But then again in the not so distant past it was hard for me to even stand up and sit down once.

So thank goodness for being able to get into the pool tat all o stave off  shpilkes as much as possible.

Monday, March 2, 2015

Mystery solved...I think

Got my skis out this weekend.
I think I finally found out what is wrong with my foot.

Dr. Holt told me last week that it was the fault of my cute colorful tennis shoes, which are curved on the inside of the toe bed and have an added ridge on the outside. Although he said he can imagine that the shoes were constructed this way for better side-to-side motion, but because I pronate, they added too much pressure to my big toe and the inner side of my foot, therefore causing an inflammation in that area and the whole upper part of my foot.

He added a little extra cushioning to the bottom of my orthotic in an effort to take the pressure off that part of my foot. I put faith in what he says because as physical therapist with a Ph.D in biomechanics, he cured my plantar fasciitis.

He looked at my tennis shoes and said, "Just looking at those shoes makes my feet hurt!" he said.

 He was also unhappy with my cute blue running shoes because they do not fit his test for a firm inner sole around the toe bed.

So it's goodbye colorful shoes and back to the old black and white.

Function trumps fashion.

In the meantime I need to get the inflammation down. He said to ice and to stretch my toes as much as possible. Play with my toes, as it were. Also I am taking some ibuprofen just to get me over the hump and obviously skipping tennis and running for a while. It is frustrating to get everything in order and then get hobbled by a toe.

Dr. Holt said he doesn't much like podiatrists, because they usually give shots that do not work (which is what happened the last time I went to one), but just to cover all bases (which I cannot run!) I am keeping an appointment with another podiatrist tomorrow.

But enough with the feet.

Some friends had asked me to go cross country skiing over the weekend, and since I hadn't done it in ages and wanted to try it again, I asked if that would be OK on my feet. He said it was probably OK since it did not involve pounding.

It was great to be outside after all this cold weather. It took a while for me to get my ski legs back and so I fell a few times, but it was on soft snow and I didn't mind.