Monday, April 29, 2013

Destination Boston

I have been going back and forth to the Boston area a lot these days, so much so that I think my car might know how to get there itself.

Katie and I went back to Brandeis after the wedding, then I drove home and went back for her a cappella spring show yesterday. Tomorrow I need to go to Boston proper for an appointment with the GI doctor. Then in about a week I'll return to Brandeis to bring Katie home.

It took so long to get an appointment with the GI doctor that my throwing up problem has long since resolved. But it will be interesting to find out exactly why it happened and hopefully get a prescription for some medicine in case it happens again.

I don't know what it is about these a cappella performances, but as soon as the group comes on stage and I see my beautiful smiling daughter and the rest of the talented group, my eyes fill with tears. I sniffled through much of the performance of Broadway show tunes. I wish they could afford to make a good-quality recording. They started out with "Seasons of Love" from "Rent" (sniffle sniffle) and a song that Katie arranged, "Breathe" from "In the Heights," another beauty. The one that really gets me is "Being Alive" from "Company." And then on a lighter note, they do "I Wish I Could Go Back to College" from "Avenue Q." After seeing how much fun they were having, who wouldn't want to go back?

Afterwards we had bagels with Jim and then, highly caffeinated, I drove back home. After sitting all day, I really wanted to go for a little run. Since it was getting dark, I made it little indeed. Not wanting to make a crash landing at the end, I cut it short even though I could have gone farther. As my father would say, "Good clear thinking."

Thursday, April 25, 2013

This and that

I'm not sure what I was thinking when I wrote in my previous post that I would try to go home after my "blood-letting" on Tuesday.

By the time they finished taking out a bag of blood, it was 5 p.m. and rush hour in Boston. I had left my stuff at Diane's, where I had stayed the night before, and could barely keep my eyes open on the 15-minute drive back. I lay down on my favorite couch and conked out, sleeping soundly for more than an hour. I could smell a delicious dinner cooking in the kitchen. It was nice to have Diane and David take care of me.

The next day, bright-eyed, I drove back without a problem. But...when I got home and was cleaning up in the kitchen, I hit my head on the edge of an open cabinet door. I reached up to feel the wet stuff on my neck, and when I took my hand away I saw that it was blood. Just because I made it to the wedding without injuring myself, doesn't mean I can return to klutziness. I must renew my vows to watch where I'm going. Anyway, the bleeding stopped after I pressed a cloth to my head for a few minutes. It's now the next morning and I am fine, although I have a little headache.

In other news from my checkup on Monday, my liver is stable, so I can cut the prednisone down from 5 mgs. to 4. Woo-hoo! I can also stop taking Kayexalte, the grainy mixture that tastes like I would imagine drinking sand to be. The point was to lower my overly-high potassium level, which is actually on the low end of normal now.

Still taking lots of pills, but any decrease feels like a step in the right direction.

Monday, April 22, 2013

Ben and Meghan's wedding

First dance, with me looking on at far right.
The wedding Saturday was just perfect. The bride looked like a movie star, and the groom was incredibly handsome! And most importantly, they looked so happy together.

It was wonderful to be surrounded by friends and family. Everything went off without a hitch. I was worried that Joe and Katie would be unable to make it to Friday's rehearsal and dinner. They were in lockdown in the Boston area, but they got out on time. Of course given the tragic events in Boston, I was worried by a lot more than that. But they did make it to New Haven on a beautiful spring day with flowers and trees newly in bloom. The celebration was a good counterbalance to a horrible week.

I was so proud of each of my children. Ben, of course, but also Joe and Katie. Katie read beautifully during the ceremony. And for a unique touch, Joe used his sports announcer voice to call out the names of the wedding party and parents as we entered the reception. Bygones were bygones as I walked in on the arm of Jim, my ex-husband. Joe later gave a speech noting the events in Boston but saying that we all should keep in mind that there are more good people than bad people. He said aptly funny things about Ben and aptly serious things about Ben's role in his life and the important role Meghan has already played and will continue to play.

On Saturday and Sunday morning I walked with my sister/friends around the Yale campus, enjoying the buildings and the scenery. On Sunday, those of us who were up and about went out to brunch. And then Katie and I split the driving to get her back to Brandeis. We stopped on Route 84 at a funky bookstore/restaurant with a bird-feeder outside the window and a chart of birds on the table. It was fun to identify the birds as they came and went. Plus I had the best club sandwich and french fries ever.

Today I had checkups at Dana-Farber. I had joked to Melissa that I would keep on my eye makeup from the wedding, but it turns out that the makeup lady put so much on that I still haven't gotten most of it off. My counts were great, with my platelets going over 100 for the first time in ages. (They are 105 out of a normal scale of 155-410.)

I also checked in with my surgeon in head and neck oncology. She said my tongue looks perfect and I can wait a year to come back.

I was so tired from the weekend that I dozed off in between appointments and then slept in the car before my ritual stop at Starbucks.

I need to have another "therapeutic phlebotomy" to withdraw some blood and with it the ferritin that is still overloading my liver. But all the appointments today were booked with people donating blood for victims of the marathon bombing. So I'm staying overnight and getting it done tomorrow afternoon. I wish I could donate the blood, but alas, it wouldn't do anyone any good. I hope that I have the energy to drive back tomorrow afternoon, but I'm not sure that it is wise, given that the blood draw makes you anemic. I have my supply of peanut M&Ms to help keep me awake, but if it ends up being rush hour, I'll probably stay another night.

Wednesday, April 17, 2013

Marathon memories

In grieving over the Boston Marathon tragedy, I have been thinking about my own connection to the race.

I "ran" the marathon once and can still feel the thrill of being there. The word "ran" is in parentheses because I only ran four miles, although I did cross the finish line. No, I was not doing a Rosie Ruiz thing, sneaking in part-way and pretending to have run the whole race. My friend Diane, who was actually running the marathon, asked me to do what many runners ask their less ambitious runner friends to do: jump in near the end and run with her for support.

Sharing her excitement, I dropped her off in Hopkinton, where the race starts, and then drove into Boston. Diane told me just about where to find her at just about what time, and, sure enough, along she came just when she said she would. Later I realized that she just wanted me to run, but I thought I should cheer her on, so I said things like, "You're doing great," "You're almost there," etc. I think I was annoying her. "I can't really talk now," she said. I ran the rest of the way in silence. We crossed the finish line and someone put a mylar sheath on top of me. I tried to protest, but the volunteer was on to the next person before I could get the words out.

I went into Boston on another Patriot's day when my mood contrasted starkly with the excitement I had felt on that other Patriot's Day years before cancer. It was after my second transplant, and I was sick as a dog (why do they say that?) with a fever and the feeling that I could hardly move. A friend drove me to the clinic at Dana-Farber. Melissa told me that I needed to be admitted. I had nothing with me, and my valiant chauffeur went to my sister Diane's house and picked up a few things to wear – comfortable yoga pants and T-shirts so that I wouldn't be stuck in hospital johnnies.

I got put in a hospital room where the window faced a brick wall. The darkness fit my mood. DeAngelo came in and said I hadn't relapsed again, but my bone marrow was almost empty. It was my introduction to "graft failure." The donor cells had moved out. They would have to address the cause of my fever first. Then I would have more chemotherapy and another bone marrow transplant.

Two different Patriot's Days. A light and a dark. And now another dark.

Judging from the way Bostonians have pulled together, the light will not be snuffed out.

Sunday, April 14, 2013

Looking forward to the big day

High school graduation, June 9, 2003
Is he thinking about his wedding day?
Six days until Ben's marriage to the lovely Meghan Toumey.

Forgive me while I share with you the song that I have been humming, from the marriage scene in "Fiddler on the Roof."

Is this the little girl I carried?
Is this the little boy at play?

I don't remember growing older
When did they?

When did she get to be a beauty?
When did he grow to be so tall?

Wasn't it yesterday
When they were small?

Sunrise, sunset
Sunrise, sunset
Swiftly flow the days
Seedlings turn overnight to sunflowers
Blossoming even as we gaze

Like so:

Whether or not they affix a Broadway song to as many occasions as possible, I am certain that all parents ask the same question: Where did the time go?

In addition to the usual, I have a slightly different take on it.

During my first round of chemotherapy in 2003, I was hoping to make it to Ben's high school graduation that June. I did indeed get out. I got dressed up for the day, putting on my favorite scarf over my bald head and applying a little lipstick. I attended that happy occasion, then went back into the hospital for more chemotherapy.

I remember setting goals. Sometimes they were very little, like making it through the next day or the next hour.

In general I was afraid to make plans, but it has gotten easier.

After my last, most difficult hospitalization, I saw a nephrologist (kidney specialist) who scheduled my next appointment for four months down the line. I was surprised, and pleased, that he actually thought I would live that long.

And here I am, looking forward to the big day.

Monday, April 8, 2013

If at first you fail to learn...

...try and try again.

When I was recovering at home from my bone marrow transplants, I had a rule: "Only one thing a day."

So whatever I did, a walk, a quick shopping trip, whatever, I limited myself to that one thing even if I was tempted to do more.

I don't have to limit myself to one thing anymore, but I do have to remind myself that I am not the Ever Ready Bunny, and oddly, for a relatively smart person, I sometimes forget my limits. (If you know me, you're probably thinking "Duh."). No I did not fall this time or anything like that. But here's what happened that made me think about limits again.

I saw a friend this morning who I hadn't seen for a long time, and who knows my history. A look of concern in his eyes, he said he wanted to ask me a question. I said sure. "Are you OK?" he asked.

Cancer survivor paranoia set in. "Why, don't I look OK?" I asked, wondering if he saw something I was missing. "You look fine, but you're a little stiff, and I thought maybe something was going on with your medication," he said.

I told him I was OK and that I had played more than two hours of tennis the day before. Tonight after I was extra stiff in yoga and wishing for an oil can, I thought about my activity level yesterday.

I was scheduled to play in a team tennis match, and then I locked in to that night's round robin without giving it much thought. The match went a full two hours of excellent tennis. Afterwards, instead of stretching, I sat around and ate the food that our team, as the hosts, had brought. I was pretty tired, but I went home and walked the dog, did a few things around the house, and went to the other tennis event.

By that time I was stiffening up. I didn't want to play, but I had committed. I only played half – 45 minutes – sharing the spot with someone else who had just played a match. It was actually fun, but I was dragging.

Today I am feeling it. Here are things that every active person should remember:  Drink water, stretch, rest, and rejuvenate.

Saturday, April 6, 2013

The "in between" cancer anniversaries

Cancer anniversaries – some call them cancerversaries – can be good, bad and in between.

Bad, of course, is date of diagnosis, and good is date of finishing treatment that recedes in time. I am four years, two months and one week out, but who's counting. God willing and the creeks don't rise, I will get to five years and call it a day.

This time of year being ten years after my diagnosis, I am thinking more about the in between than I usually do. I am in between two of those dates, April 4 and April 9.

These dates are not in my head. They're in the little blue book that Diane gave me 10 years ago to keep track of everything. Nowadays many people mark important dates in their phones or computers, but I like having this spiral notebook as a visual reminder of my cancer journey. It's coffee- and ink-stained, and during bad periods, my handwriting is almost illegible.

I wrote, "Last day of work: Friday, April 4."

And underneath that, "Admission, 4/9/03 (Wednesday)."

I can see both of those days clearly.

On Friday, thinking for some reason that I'd get something done, I went to work. I figured I would be treated locally at Baystate Medical Center. But the phone rang constantly. It was friends and family insisting that I go to Dana-Farber, one of the top cancer institutes in the country and about 90 miles from me in Boston. I finally gave in, and that Monday I left for Boston, saying goodbye to my children and my life as I knew it.

After my initial appointment with my new doctor, Daniel J. Angelo, Diane and I enjoyed a couple of days of retail therapy in Boston while waiting for a time to have surgery to implant the Hickman Catheter through which I would receive chemotherapy. We saw a movie, went to a jewelry store and picked up books and soft clothes to wear in the hospital – yoga pants and T-shirts so I wouldn't have to lie around in those awful hospital johnnies. That Wednesday, we went to Brigham and Women's Hospital loaded with stuff such as posters to put on the wall, videos, books, my quilt that I had brought from home and a lamp to serve as an alternative to harsh hospital lighting.

After the surgery, we set up the room, and it was finally time for Diane to leave. It was just me and my fears.

Then a bubbly nurse brought me Oreos. She chatted about this and that as she sat with me for a chemotherapy "push" going directly into my veins. The fear on that date was worse than the reality. Later, of course, as the chemotherapy did its work, I became extremely sick. But that night turned out to be OK.

Judy became one of my many nurse friends, and I still seek her out when I return to visit from time to time.

Thursday, April 4, 2013

Roger Ebert: Acceptance is wise

Sadly, Ebert died today after this blog was originally posted. He was 70.

Like many other fans of Roger Ebert's film criticism and of his spirit, I was saddened to learn that his cancer has returned.

This past summer, he graciously agreed to do an interview with me for the magazine Cancer Today, in which he talked about his decision to have his picture taken and go public despite his face being disfigured by cancer surgery. Because he is unable to speak, he sent his responses through e-mail.
Roger Ebert

"Acceptance is a wise course to take," he said at the time.

Ebert's views served as a jumping-off point for a discussion of how other cancer survivors grapple with the challenges of being visibly changed by surgery. Michelle Corove Fingeret, director of the body image program at the M.D. Anderson Cancer Center in Houston, Texas, said that many survivors feel guilty about being upset by their appearance, thinking they should just be happy to be alive.

She tells them it's OK to be upset by changes in their appearance. And although they might be afraid people are looking at them in a certain way, they need to understand that they have no idea what other people are thinking.

In keeping with his formidable spirit, Ebert announced in a blog post Tuesday that he was taking a "leave of presence" due to radiation treatment for his new cancer. That means he will continue to review only the movies that he wants to review, and probably blog about his illness, while associates will make sure all the major releases are covered in his column for the Chicago Sun-Times. And he will continue working on his other projects.

What a trooper.

Wednesday, April 3, 2013

Staying on my feet

I am behaving myself and staying off the rutty, muddy path around the lake, unless I am walking the dog, when I go slowly enough to stay out of trouble.

Yesterday, after lollygagging around the house and lying on the couch talking on the phone, I went to the gym. Getting there is the problem; once I'm there I am fine. I rode a bike and did the Arc machine, which is really quite strenuous and actually gives me a better workout than I get running at this point.

Then I did sit-ups, stretching and exercises on a mat, and best of all, got my Tootsie Rolls on the way out.

I did an interview yesterday at Holyoke Community College for one of their upcoming publications. It was about the supports offered through the Office for Students with Disabilities and Deaf Services. The acronym is a tongue-twister: OSDDS.

The more I write about all the services offered by this community college – most recently the Co-op program through which students get internships that often turn into jobs – the more impressed I am.

I think that support services have improved at four-year-colleges now, but back in the day when I went to Vassar, there was not much. You were basically plunged into this new life and left to fend for yourself. In the scheme of things, of course, there is nothing at all wrong with having the opportunity to be in a beautiful place with nothing to do but play and learn, but if you are shy and homesick like I was, you don't appreciate it as much as you should.

Looking forward to writing the story for HCC and going to tennis tonight.

Not looking forward to filling out my last FAFSA. When I was going to the office where I was doing my interview yesterday, I passed an office with a sign offering help for filling out the dreaded form. I wanted to drop right in. I better do it before the last minute in case I come across a problem.

Tomorrow is another day.