Tuesday, December 30, 2014

New York, New York, it's a helluva town

New York trip: Fun, fun, fun.
New York selfie
Drove in on Saturday and got a spot good for the two days we needed. Happy feeling.

New problem: Earworm.

Definition: A song that sticks in your head.

Cause: The song "New York, New York," from the wonderful musical, "On the Town."

Now you can have it too.


Saturday, December 27, 2014

Blessings and a trip to the Old Country

Chocolate babka (from New York) for dessert, now chocolate babka for breakfast, and a fun family gathering at my house last night where the conversation, of course, turned to the Seinfeld chocolate babka episode.

It was our post-Hanukkah gathering and thanks to Sam, Diane and David for bringing the dessert. We exchanged small presents and had dinner, giving me reason to use my mother's silver and the embroidered tablecloth bought by my parents in Portugal. Katie, a specialist in setting a nice table, gave me a choice of ceramic napkin holders with these words written on them: love, joy, blessings, abundance and peace.

I chose blessings.

Today we are heading to the Old Country to see "On the Town," preceded by dinner at Ellen's Stardust Diner, home of the singing waitstaff.

The last time I wrote that I was in the Old Country, some people thought I meant Ireland.

I was happy to see this heading of a section in the menu at the Lone Wolf in Amherst offering latkes, bagels and blintzes supporting my point of view.

"From the Old Country...well, New York."

Well, must go get my act together or we're not going to make it for dinner.

Wednesday, December 24, 2014

Prednisone taper: the good and the bad

When Dr. Alyea cleared me to decrease my prednisone from 2 milligrams a day to 1 mg. a few weeks ago, I was very happy.

Prednisone suppresses your immune system, and getting off of it means also getting off the other drugs that I take to prevent pneumonia and CMV – Cytomegalovirus which I have had several times.

I also got the go-ahead to taper another drug, Nexium, and he wanted me to do that first so that if I have problems I will know which taper to blame.

So far, so good. Now it is just about time to decrease the prednisone. Yet I am reluctant, and here is why: Prednisone mimics cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. People must gradually reduce prednisone dosage to give their adrenal glands time to resume their normal function. The time it takes to recover depends on dose, individual physiology and duration of use.

Withdrawal symptoms can include fatigue, weakness, body aches, joint pain and depression.

I have certainly tapered slowly, from 40 mgs. at my high point, but I have been on it so long – almost six years – that I am concerned about getting symptoms anyway. Dr. Alyea told me that it should be fine because I am on such a low dose that my adrenal glands are already working.

Still I am concerned. I remember my friend Patricia (PJ) getting so depressed when she went off that she basically begged to get back on.

With things to do such as Chinese food with the Chipkins tonight and a trip to New York on Saturday with Katie to see “On the Town,” I don’t want to risk it.

All things considered, my New Year’s resolution is pretty easy: Take one less pill a day.

Tuesday, December 23, 2014

Hanukkah party worth the long drive

Nothing like driving for a long time to give you the pent up energy to fuel a (relatively) long run.

But to back up: I drove to New York on Sunday for my cousin Peter and his wife Anne's Hanukkah party in Riverdale, then after that drove to Ben's in Fairfield, then spent the night and drove back home yesterday.

It is not the kind of driving I usually do alone anymore. Well, I guess I wasn't exactly alone because on the way down I got tired enough that I had to stop at a Mobil station and get the bag of Fritos and the Coke that accompanied me into New York. By the time I got to Ben's my eyelid was twitching!

It was worth it, though. I saw relatives that I hadn't seen for a while, relatives I see on Facebook and also friends of relatives and relatives of relatives. We had sandwiches on the kind of New York deli rye that you can't get anywhere else. I indulged on thick corned beef sandwiches and cole slaw, yum, and talked to a lot of people.

We of course lit the candles and then had presents. I was surprised and happy that I got two scarves...especially since I still haven't found my bag of winter stuff.

We have a small family and I'm glad to be able to keep up with relatives on happy occasions.

When I got home yesterday I ran into the house, put on my running stuff and flew out of here. I ran to Brunelle's Marina and back and didn't feel tired at all. A police officer looking for speeders was parked on the shoulder and pulled a little off the road for me. I asked him if was going to give me a speeding ticket and he said, "Not this time." (I hope he wasn't projecting onto some other time.)

For some reason I thought that run was three miles, but I checked it on google maps and it is actually 1.9 miles one way. So almost four miles.

I skipped St. Pat's last year due to the spate of terrible pain I had in my quads (probably from prednisone), but I think that I might actually be able to do the next one. Toes crossed.

Friday, December 19, 2014

Ferritn fight going well

Every time I see this little bottle of Exjade, I have a Pavlovian response: I get queasy and want to back away.

Sometimes I find a reason to skip a day or to put it off until later in the day. For example if I have to leave the house early and don't have the time to wait for 30 minutes to eat after I dissolve the five pills in 7 ounces of water. After chugging it down I get a burst of instant nausea and heartburn. A nice way to start your day.

But then I remind myself why I need to keep taking this very expensive drug (luckily covered by insurance) whose trade name is deferasirox.  I must keep chipping away at my high ferritin level so that my liver can have relief from all that stored iron resulting from so many blood transfusions.

For motivation, I need only look at the list of the problems that according the Iron Disorders Institute are caused by iron overload: Excess iron in vital organs, even in mild cases of iron overload, increases the risk for liver disease (cirrhosis, cancer), heart attack or heart failure, diabetes mellitus, osteoarthritis, osteoporosis, metabolic syndrome, hypothyroidism, hypogonadism, numerous symptoms and in some cases premature death. Iron mismanagement resulting in overload can accelerate such neurodegenerative diseases as Alzheimer’s, early-onset Parkinson’s, Huntington’s, epilepsy and multiple sclerosis.

The results of my latest ferritin test were still pending on my last visit to Dana-Farber. So Melissa emailed them to me this week, and I am happy to report that the level is down to 1601.

This might not seem great considering that normal ferritin range for women is 11 to 307 (nanograms per milliliter). I forget what mine was when I started this process, but I know it was around 6,000 or even 7,000. When it goes below 1,000 I will really see the light at the end of the tunnel.

I wish that I could share this with PJ. It was one of the things that we compared. She was the one who suggested addressing it additionally with therapeutic phlebotomy, something else that I like to put off until I remind myself of the benefits. It has been working out for me to get this done at the Kraft Blood Donor Center at Brigham and Women's when I have another appointment and am staying overnight. But I am overdue and need to schlep over to Baystate to get it done again asap.

PJ and I had our own little support group for these things. You can't expect most people to jump for joy when you tell them your ferritin is down. Only someone experiencing this battle can really get it. But I am sure my health care team can. I look forward to the day when I can toss my leftover pills in the trash. That is like throwing away gold, but I imagine the manufacturer, Novartis, does not want them returned.

Maybe I can do it ceremoniously at Dana-Farber. That would feel good.

Friday, December 12, 2014

Dana-Farber summary: happy

I know how far out I am, but to see it on Dr. Alyea's screen at Dana-Farber yesterday was something else: five years, 10 months, two weeks.

Younger than Maddie, but older than I ever thought I'd be.

My counts were excellent: white and red both normal, with my hematocrit as an all time high of 35. Platelets were good too: 140, which although lower than the normal range of 150-450, is excellent for me.

My liver enzymes are lower (which is good), so I get to decrease my prednisone to 1 mg. a day.

As he shook my hand to say good-bye, Dr. Alyea said something that I wrote down so I could remember the exact words: "There's no greater pleasure for us than to visit with you."

Music to my ears.

Then I was off to see Dr. Lin for a PDT follow-up. She was pleased, although she did zap a few spots that had resisted the light therapy.

She also told me the answer to a certain mystery. I had complained to friends that I thought my stomach was getting fat despite all my exercising and Pilates classes. But it is not fat after all, and it looks a little different. It is graft vs. host of the skin. Sorry, TMI, but I also have it on my thighs. Always something.

One treatment is more prednisone, but I definitely don't want to do that. Dr. Lin has prescribed a cream and a visit in a month to yet another specialist, a doctor who focuses on graft vs. host of the skin.

I never did get my eyes checked out for the graft vs. host that I have been treating with Restasis eye drops. My appointment was at 3:10. I think they must triple-book. Two hours later when there were people before me and I still had not been seen, I was so angry and frustrated that I up and left.

I will reschedule for an earlier time when they are not so backed up.

Wednesday, December 10, 2014

Check-up anxiety and cancer nightmares

As check-ups approach, nightmares unfold. Sometimes.

It's been a long time, so it happens less frequently.

Back in the period after each transplant, I often took an Ativan the night before so I could get some sleep. That never even crosses my mind. In fact, last night I slept like a log, waking up at 7:30, which is late for me these days.

I didn't get any formal exercise yesterday, but I think I got exhausted from running around in yesterday's deluge– from tutoring to errands to last-minute oil change that was overdue – and getting soaked because my little umbrella blew inside out.

My nightmare the other day makes sense in light of my friend Ann's death from squamous cell cancer:

I dreamt that my dermatologist removed and biopsied two likely squamous cell cancers from my arm. They were larger than the usual ones.

"I wish I could tell you I wasn't worried about these," she said.

Doom and gloom.

I have three appointments in two days, and one is with my dermatologist tomorrow. It is just to check on my skin after last month's face fry, or Photodynamic Therapy. It looked horrible at first, but now I think it looks pretty good, and I think she will be pleased.

Also tomorrow, I have my check-up with Dr. Alyea. I feel good so I am not worried, but there is always that split second of anxiety while you wait for your counts to come up on the screen.

Today I am going to Mass Eye and Ear to see the cornea specialist Dr. Reza Dana, who is monitoring my eyes for the low-level graft vs. host that I seem to have. I've been using Restasis eyedrops frequently during the day, so we'll see how that has been working.

Also today, I'm seeing my social worker, Mary Lou Hackett, which I do from time to time. I sent her the blog posts I wrote about the deaths of my friends, PJ and Ann. I think that when possible these things should be discussed with someone in the field of cancer survivorship. I don't know what I expect her to say, but I think that airing my feelings will help.

Tonight: sleepover at Diane and David's.

Friday, December 5, 2014

My basketball career, then and now

Me shooting hoops with the guys in Washington, D.C., in 1978.
One of my high school friends took the above picture of me when we were visiting our friend Emily in Washington, D.C. in 1978.

We were sitting in a park when I saw some guys playing basketball. I went on over and as you can see, shot around for a while. It was fun and they didn't seem to mind.

As I told my kids many years later when we played in our driveway, I coulda been someone if anyone paid attention to girls' basketball back in the day. I was on our high school team, but Miss Benson didn't teach us anything. We had two guards who stayed on one side, two forwards on the other, and rovers, which I always wanted to be, who could cover the whole court. And instead of having uniforms like the boys did, we wore silly pinnies.

There was more caché in being a cheerleader. I practiced one summer for tryouts, a day during which one older girl came over and pressed down hard on my head to get me into a fuller split. I never did make it all the way. Emily and I were thrilled to get our red and white pom-poms and uniforms but soon realized that actually being cheerleaders was anticlimactic. We were told that we performed like dead dogs and kicked off after just a few games.

On the basketball court, I had a decent shot and ease in running around but never learned how to move. When I made it onto the team at Vassar, I mostly warmed the bench.

Still, I kept playing after college, joining a Northampton recreation league team when I moved to Western Massachusetts. When Steeplejacks – sponsored by a restaurant in Sunderland ( no longer there) – disbanded after infighting outweighed fun, I played in Northampton with friends after work at the Transscript-Telegram.

I also went to the Y with my friend Greg Pearson to play basketball with the guys. At home, we had some fun in our driveway, although my unorthodox shot – arms raised overhead instead of one hand guiding – drove Ben and Joe crazy. They promised to put an end to that when they got tall enough to block me, which is what happened.

Play ceased upon the demise of our basketball hoop, which was cemented into the ground. It went crooked after Jim softened it up by backing into it, then I finished the job by backing into it again.

Cut to the present. The scene: The Holyoke Y, again. A group of guys usually plays basketball in the gym before the fitness classes that I take. The other night, as they were getting ready to leave, an urge came over me to see if, after years, I could still shoot.

It's a good thing my kids weren't there because they would have been SO embarrassed. I walked over and asked if I could borrow a basketball to take a few shots.

Well, I could not get my feet off the ground. Each shot was perfectly aimed, and the ball sailed...right under the basket. Probably thinking, "Crazy lady," the owner of the ball took a few shots to demonstrate. No luck.

I returned the ball, which frankly was dead, and went across the gym to where another ball with more air was lying. After a few more tries, I finally made a shot. Victory!

I jogged back to where they were packing up and said, "Hey you didn't see it but I made the shot!"

One of the guys smiled and said he had.

Probably thought, crazy old lady.

But I was happy. After all the serious things I have been through, I can still be a goofball.

Saturday, November 29, 2014

Rooting for UMass football (announcer)

I'm sorry if this sounds terribly un-American, but unless you count that I felt like I was at a football game while watching the TV series Friday Night Lights, I had never been to one until yesterday.

That's when Katie and I went to the UMass vs. Buffalo game, not so much to watch the action on the field as to hear Joe announce. Let me tell you it was a thrill a minute. I felt like turning around and telling spectators, "That's my son!"

It was the same way when I heard him announce a UMass hockey game. I was cheering more for him than for the players, and that time I crept down to behind the announcer's box and watched him do his reads. (And true confessions, I even took a picture in which I got mostly just the back of his head.)

Ben had come up from Fairfield yesterday to go the the football game with two friends, and then he slept over. This morning, the four of us had breakfast before everyone went their separate way.

I've seen parents of around my age writing this on Facebook over the holiday weekend and it is so true: It is nice to have a full house if only briefly.

Here is Joe's interview on UMass Sports Insider with senior linebacker Stanley Andre, an economics major (1:50 into the segment.)
I am kvelling!

Thursday, November 27, 2014


Joe, Meghan, Ben, Katie and me
Thankful for Denise, my donor, for making it possible to enjoy this wonderful Thanksgiving with my family.

Wednesday, November 26, 2014

Another loss

Ann Gregory
I was going to write about my running around since Friday: New York (Central Park, Chinatown, Broadway, the Museum of Modern Art), Providence, Boston (to pick up Katie), and finally home today.

I was also going to post some photos, but my heart is not in it, because today, I read this post from Ann Gregory's husband, Chris, on her blog, Ann's Fight: "At 9:30AM this morning my best friend, wife, lover and radiant bride took her last breath.  The light is gone from the world."

I have been following that fight since starting my blog in 2008. Like many readers who had never met her, I felt as though I knew her. Our struggles were similar: leukemia (hers was ALL, or Acute Lymphoblastic Leukemia), transplant, getting back to normal, relapse, Graft vs. Host Disease, prednisone...

Some years ago, it seemed like she would be OK. She and Chris were so happy when they bought their home. She planted a garden. Returned to school. Dreamt of having children.

PJ (Patricia) talked to Ann every Sunday. Because PJ lived near enough, we became real friends. We talked to Ann about coming East from her home in Baton Rouge, Louisiana. Or maybe, we thought, we could meet half way. Have a cup of coffee or tea. Support each other in person as we had done virtually. 

Ann and Chris called me when a squamous cell cancer was discovered on her tongue and had to be removed. They knew I had gone through something similar, and they wanted to talk before the surgery. Only mine was pre-cancerous, discovered early when I was getting a tooth pulled. (A real pain, getting 11 teeth removed. A stroke of luck.) I told them it was kind of weird to have a piece of your tongue scooped out but not too terrible.

It was for her, though, because that squamous cell carcinoma spread through her system and lead to her death at the way-too-young age of 40.

Her Facebook wall is filled with pictures of her young and healthy, and, even when she lost her hair after the last barrage of treatment, still with that radiant smile. Throughout, expressions of heartbreak.

Her friend Jody Schoger, who has been writing eloquently about her own cancer fight, said this:
"I'm grateful for the life of Ann Betts Gregory -- her light, a keen intelligence illuminated by such a generous and kind soul. She was funny, impish, loyal. She had more cancer in her adulthood than should be possible -- pure testament to her determination and strength."
Four of us had bonded through our leukemia blogs, three of us with AML.
Dori, who I knew through her husband Jim's blog Run for Dori; PJ on The Plog, Ann, and me.

Now there is only me.

Saturday, November 22, 2014

Catching up with friends from Friends

My friends from the Friends Seminary class of 1972 try to see each other as often as we can. We talk and we text. When the larger group got together at reunion, we shared so much history that it seemed like we barely missed a beat. I got reacquainted with Dan Green and Sabrina Hamilton when we all ended up living in Western Mass., and he was kind enough to create my website, Ronnigordon.com that is invaluable for freelance writing. Same thing when we got together: Never missed a beat. I am so excited that in the next few days I will see two "old" friends who I haven't seen in ages. Tom Rosenfield is coming from Switzerland to visit relatives in New York, and I am going to meet up with him and some others tomorrow. Next week, Scott Miller will travel from West Virginia to Providence, R.I., also to see relatives, and since that is under two hours from me, I'm going to meet up with him there.

See if you can find me in our 11th grade class photo, top. In the bottom photo, it is easy to find me with my crazy hair. We are all holding our senior photos. I think Scott Miller is responsible for that one.

In any case, I'm heading down to New York today via my usual hop, skip and a jump, stopping in Fairfield, where Ben will take me to the Metro North.

Last time I wrote that I was heading to the Old Country – what some of us Jews call New York – my friends here with roots on the Emerald Isle thought I meant Ireland!

But it is actually my own old country, where I feel at home the moment I step into Grand Central Station.

My room looks like it has been hit by a hurricane because I tore it apart last night looking for something to wear out to dinner. Even though I know that the house you leave is the house to which you return and it is nice not to come back to a mess, I am going to shut the door and get on the road as soon as possible so I will have time to do my favorite run around the Central Park reservoir before having dinner with my cousins.

Tomorrow: Dim Sum in Chinatown, then a visit with my aunt Marge and Bill before coming back.

Thursday, November 20, 2014

Never tidy up

Katie returned a call last night as I was lying in bed reading: 10:45 my time and an hour earlier in Minneapolis. This was fine because she knows I stay up that late and also because we cracked each other up, which was a good tonic for some (minor) things that are bothering me.

Basically I made her laugh which then made me laugh, and as we know laughter is a good kind of contagious.

The topic was my failure to find the big bag in which I put winter stuff last spring: mittens and gloves and hats and scarves. Usually these things stay in overflowing bins in the coat closet. I thought I was doing a good thing by bagging everything up for the summer. But I cannot find that bag anywhere. I had to break down in Northampton and buy a hat even though my favorite one is in that bag someplace. So is a beautiful chenille scarf of my mothers that I love to wear.

In telling Katie this, I said, "Never tidy up. You will never find anything again."

She thought it was hilarious advice from a mother who like most others always said, "Clean up your room!"

I said I meant tidy up as you go of course but never do something so major.

"Sorry," she said. "I already wrote it down."

It will now go in the book of "Momisms" along with my famous exhortation, while giving them the lecture about never getting in a car with a driver who is drunk, to "Never get in a car with anyone who drives!' which is not exactly what I meant.

Katie asked if I had looked in the Scary Closet. This is a closet in our dining room that runs deep under the stairs where it is too dark to see much. Things get tossed in there and then get lost and sometimes found. I bought my friend Margaret the perfect Life is Good T-shirt for her 60th birthday, then threw it in there but forgot so I had to buy her another one in a different color.

It was the little Jake character saying "I dig everything" with a picture of a trowel and flowers, perfect for Margaret because she likes to garden. Recently I benefited – or rather Margaret benefited – from a tidying up of that closet when I found the first one and gave it to her. There was so much stuff in there that as I sat on the floor tossing long-lost things onto the dining room floor, I was engulfed and not sure how to get out.

Another reason for it being the Scary Closet is that there is a crucifix hanging on the wall. Even though I am Jewish I am afraid to throw it out. I do not want to bring down any bad luck.

Speaking of superstition, I have just turned a glass upside down on the kitchen counter. A friend told me that this is the way to find lost objects. I am determined to have better results today.

Wednesday, November 19, 2014

Moving along

A funny thing happened on my way into the Holyoke YMCA's gym yesterday.

I was looking for the regular 45-minute exercise class but instead walked into a two-hour Fitness Marathon that was happening instead. Not knowing what was in store, I started to back out, but one of the friendly instructors told me to give it a try. She also said that of course I did not need to stay for the whole thing.

Well, I stayed for an hour and a quarter and discovered a couple of things. I can do cardio kickboxing even though I had told friends it was not for me. I can actually do multiple jumping jacks (although not doubles), which is an accomplishment considering that a while back when my friend Jo (personal trainer and nurse!) gave me a workout program and said to do jumping jacks, I couldn't even get my feet off the ground.

Knowing the value of not falling down, I marched in place when there was too much jumping around.

Today I rejoined the Wednesday tennis round robin and was happy to see everyone. A few of us talked about our aches and pains and then one of the women said, "Look at us!" My contribution to the conversation is that my toe still hurts, and the podiatrist's conclusion is that it is arthritis.

This is hard to treat because I am not allowed to take anti-inflammatories. A physical therapist is working on it. Also I bought  Triflora arthritis gel at Whole Foods. I don't know if this homeopathic gel will work, but I liked the looks of it.

A friend pointed out to me at tennis that after what I've been through, a painful toe is nothing.

This of course is true, but it is also true that I complained more loudly about my other foot problem – plantar fasciitis – than I ever complained about leukemia.

In any case I had three fun matches, each one basically tied, and I don't feel any worse for wear.

Sunday, November 16, 2014

Reality star's death strikes a nerve

From left: Alicia Quarles, Diem Brown, Kara DioGuardi
First thing yesterday morning, a tab slid onto my computer screen offering STORIES THAT MIGHT INTEREST YOU. The headline read, "Reality star Diem Brown dies after cancer battle."

These alerts are often annoying, but the genie in the computer guessed correctly that I would click on a story with the word cancer in it.

The story, from USA Today, was that Diem Brown, a star of MTV's Real World/Road Rules Challenge died Friday at 32 from ovarian cancer.

Brown had first been diagnosed with ovarian cancer at age 23, and it had returned twice, in 2006 and in 2012, and a third time earlier this year.

I had never heard of Diem Brown and had never watched any reality show let alone this one.  But I was still touched when I saw the photos of this beautiful woman and saw when she endured.

Brown had chronicled her fight in a blog for People.com, becoming an advocate for cancer patients and founding MedGift, a support registry for those suffering from any illness.

Diem Brown
The charity provides a way for patients to create a gift registry so that loved ones can contribute money and time to help a patient cope with treatment or ease a financial burden. It also provides tools to create and promote support pages for people with cancer or any health-related need and has a space where readers can ask questions that are answered by a panel of experts.

On her blog, Brown wrote about her cancer treatments, her desire for a family and children, her fertility treatments, and about her struggles, fears and hopes. She competed in one competition just after finishing a round of treatment, taking off her wig.

In looking at why this resonated with me, I thought back to our Districts championships in August 2003, when I competed (and won) with my tennis partner Donna in between rounds of chemotherapy just before my first stem cell transplant. I asked her if I should keep my scarf on or show my bald head as a way to throw our opponents off balance. I think it was a joke. In any case I wore the scarf. (I never could deal with that wig.) Also I had pneumonia at the time but it was a fungal ball on my lung that was contained by a pill I was taking. Also after that I had to go almost straight back to the hospital to have that thing removed.

But anyway, back to where I was:

Unlike leukemia, which is curable, ovarian cancer is often fatal because it is difficult to detect until it is too late.

A story like this, in addition to making you feel terrible about a life ended so early, can send shivers up and down your spine. It is a reminder that you can do the right things health-wise and still get hit. (Example: Me.)

Still, I’m taking a moment to appreciate what this woman did by putting her energy into helping others rather than just talking the talk, putting herself out there in a popular venue such as People

(Certain people like myself might not admit to liking the magazine, but watch us go right for it in check-out lines, doctors offices and airports, and see us welcome it to leaf through when we’re not feeling well.)

She had good messages, such as:

"No matter what it is, you're going to have the bad days, but if you have hope throughout, you won, no matter what the results.”

Friday, November 14, 2014

Pointing to another weird problem

Most times recently when I've seen my friend Jo – Nurse Jo – I have a medical question or request.

Lately it has been taking out the stitches that I got when having squamous cell cancers removed. Last night, as were leaving her house after book club, I said I couldn't go without asking her something medical.

So I showed her the fingernail on my left pointer finger. The skin around it is red, inflamed and painful. She said it is definitely infected and I should call my doctor. I did that today and he is phoning in a prescription for the antibiotic levaquin. I am also supposed to soak it.

I was trying to figure out how this might have happened and I think maybe it was when I was pulling dead annuals out of the garden and cutting back perennials. Maybe I caught it on something prickly.

Is the moral of that story
(a) wear gloves,
(b) let it wait until spring, or
(c) get somebody else to do it?

My whole left axis is out of whack; the left big toe still hurts even after I got a cortisone shot. My podiatrist suggested wearing the boot when possible. The physical therapist who I am seeing for something else also worked on it.

Putting faith in the saying that laughter is the best medicine, I'm looking forward to attending Jokes for Jimmy, a Jimmy Fund event, tonight at the Log Cabin, featuring Mike O’Brien, Sean McCarthy, Tumbling Jack Walsh and Lenny Clarke.

Wednesday, November 12, 2014

After transplant, new relationships

Bubbe and baby
My donor is a new grandmother.

What does that make me?

Technically, of course, no relation, but it is interesting to contemplate the bonds generated after a bone marrow transplant.

It surprised me at first to learn that after transplant my blood type would change to Denise's, but then it did make sense. Out with the old, in with the new.

 It is a strange, and in this case, wonderful new world where two people previously unrelated now share something so vital as a common blood type.

We email from time to time and so I knew that she her son, Jordan, and daughter-in-law Kayla were expecting. But I didn't know the due date. On the the day last week that I wrote to ask for an update, baby Aviva Esther had arrived two days earlier.

Maybe we have a psychic connection as well.

Aviva Esther
I am happy for her like I would be for a friend.

But we are at the same time more than friends and less than friends.

It is a brain-twister.

Yet one thing's for sure: My mazel tov was heartfelt, and I loved looking at the pictures of that beautiful new life.

Sunday, November 9, 2014

No cell phone, no phone calls

My cell phone is dead, and although I have a land line, it hardly does me any good. Since I know very few numbers by heart, I won't be making many calls until I get it looked at tomorrow.

Tapping a name in your contacts list means never having to memorize a phone number.  Even if you tried, it would be hard to do since they are all just a meaningless string of numbers.

It makes me nostalgic for the days when phone numbers began with exchange names that made some sense.

The upper east side of Manhattan, where I lived, was ATwater 9, so we were AT9-8875. (Really 289, but we always used the letters.) After our parents finally gave in to our pestering over getting a "kids'" line, we added AT9-9089. My mother's jewelry store – Lynne's Speciality Shop at 1288 Lexington Ave. but just The Store to us – was AT9-6919.

I can still remember all or part of my high school friends' numbers.

Pam was (and is) Eldorado 5 -3182. Emily's began with ORegon 4 (OR4-6101). Nancy was SPring 7 (SP7-4961) and my old boyfriend was ALgonquin 4 something or other. (OK, I'll admit it, I still know the whole thing: AL4-2588.) The friends who lived in the Gramercy Park area had, of course, GR for Gramercy.

In a piece in The Huffington Post, Erica Jong wrote,  "When I first started making phone calls in the fifties, anyone could tell where a friend lived by the telephone exchange office in which actual telephone operators sat – like Lily Tomlin as her iconic comic character, Ernestine.

"My family was Endicott 2. We lived on the Upper West Side across from the Museum of Natural History... How mnemonic it was to have Audubon and Academy and Nightingale, Hunter 2 in Great Neck and Tremont 2 in the Bronx. There was Plaza 1, 2, 4 etc. and you could visualize your friend in Great Neck or the Bronx or the lower East Side – ORchard whatever for Orchard Street. Villagers were Spring 2. And my high school boyfriend was TRemont something. I am ashamed not to be able to remember the digit.

"Now New York City is full of people from ELsewhere who remember none of this because they were born in the Age of Numerals."

Almost to her dying day – even when she was sick in bed – my mother prided herself on being able to recite her whole address book.

I bet nobody could do that these days.

Friday, November 7, 2014

Please don't say you're a blast from the past

Certain words, or things, although benign in and of themselves, assume a second – and negative – meaning when associated with cancer.

For example, relapse, which is obvious. But also blast, which is not so clear.

This came to mind yesterday when I was thinking of how I had relapsed in my good intentions to do strength training. Even saying it to myself caused a shudder. Because, of course, relapse is what happened to me twice.

But what about blast?

"A blast from the past," a college friend wrote to me.

"I had a blast," people say.

Well, for me, blasts are what I do not want to see in my blood test results. Because blasts are the immature white blood cells in the bone marrow that spill out into the bloodstream of patients with leukemia, preventing the formation of normal blood cells.

When I look at my blood test results, I always want to see a zero after the word blasts. I don't remember what it was upon diagnosis, but it was high. Thankfully it has stayed at zero since that day that my donor, Denise, saved me : January 31, 2009.

For a while after that when the word "pending" came up on the printout after the word blasts, I waited on edge until all the results came in. Now I am more relaxed, but I am sure if you took my blood pressure while I was waiting for my results, it would be at least slightly elevated.

Then there is chicken pot pie. In a way you'd think I'd be grateful for it because it was a staple during my hospital stays when so many other things were unappetizing or just plain too hard to swallow. But I ate so much of it that I would be happy to never eat a chicken pot pie again. Actually the smell or sight of one can even make me queasy.

And another: Diane gave me a soft long-sleeved blue shirt from the Gap for wearing in the hospital during one of my stays. Afterwards, I wore it at home. I can remember wearing it on the night I went to the emergency room upon my relapse in December, 2008. It's nice and I don't want to give it away and sometimes when it's cold I like to wear it, but still.

Also, a thought I do not really like to entertain: What if I need to go in again and I have given away all of my hospital clothes?

These things are not intense like the sound of a gun shot would be for a war veteran suffering from full-blown PTSD. I can deal. It is fine. But associations are always around, reminding me that although thankfully it is gone, it never totally goes away.

Wednesday, November 5, 2014

First world problem, real world problem

It turns out that I actually did not have a stress fracture, although when I saw my podiatrist today he said it was a good thing that I wore the boot because I was probably on the way to getting one, and catching it early nipped it in the bud.

When I went for a little test run a few days ago, my big toe really hurt, though. Even when I wasn't moving, I got shooting pains in it. So today I asked for, and got, a cortisone shot.

Dr. Wolf said I need to ice it and baby it for a couple of days, after which I can get back to tennis. I said I was disappointed because I thought I could play tomorrow.

As I was leaving, I shrugged and said, "First world problem, I guess."

He got a kick out of that and said he had never heard it. I hadn't either until Katie told me about it being a popular topic on the internet. I think I am going to email him this link that explains it. The examples of first world problems contrasting with real world problems can really make you stop and think.

Changing the topic now from feet to face, here is an update on the natural progression after the PDT. As expected, my skin is peeling, and I have to admit it is difficult to stop myself from helping it along. Katie has caught me fussing with the things on my skin and has said, "MOM, stop doing that," and so I need to internalize my daughter and keep my hands off my face.

It reminds me of the bad old days of getting so sunburned that my skin would peel off in sheets, which I thought was really cool and also a sign that tanning in earnest could begin. In addition to sunbathing, I was also a lifeguard, and that added to my sun exposure.

You might not think it when you look at me now, but my skin is actually fair. It darkened after chemotherapy, a process known as hyperpigmentation. In the off-season when I haven't been outside in the sun, sometimes people wonder if I've gone on a vacation.

They ask, "Where did you get that tan?"

It would definitely be a conversation stopper to say that I got it in the hospital during chemotherapy, so I make up some fabulous island destination.

Only kidding. Mostly I just shrug my shoulders and say that I don't really know.

Sunday, November 2, 2014

Taking it easy

I put my yoga clothes on yesterday morning but I just couldn't make it; even though there are many worse things, having your face subjected to an intense 15-minute burn can take a lot out of you.

The pain had mostly subsided, but I still felt under the weather and like I had a low-grade fever. The couch looked more inviting than the yoga studio, so I took a nap instead. I took Maddie for a short walk, then read and sent out emails inquiring about new freelance jobs. That was about it.

Although I can hardly ever find any movies to watch on TV, I found  "Enough Said," with Julia Lewis-Dreyfus and James Gandolfini. It was a nice little romantic comedy but also sad.

The dedication, "For Jim," appears before the credits at the end of the film. It was the second-to-last film for Gandolfini, who died last year from a heart attack at age 51. Roger Ebert, also gone now, wrote, of the dedication, "It will likely turn a pleasant-enough comedy into a two-hanky weeper for many."

(Actually I really teared up at the scene in which the mother played by Lewis-Dreyfus bids a tearful farewell to her daughter, who is heading off to college for the first time. It seems like only yesterday that I was doing the same thing.)

Today despite almost being blown away by the wind, I did make it to Pilates and for a walk with Maddie. My face will probably be red for a week and then it will start to peel. I go back to Boston in a month for Dr. Lin to survey her handiwork.

Friday, October 31, 2014

A bad sunburn, minus the sun

Yesterday's PDT wasn't as bad as the one the previous year, and in fact each one gets easier. Dr. Lin said that is because my skin is looking better and there are fewer areas to treat, which doesn't quite make sense to me because the blue light is directed at your entire face.

In any case, my memory had deceived me, because I wrote in my last post that I thought it was only five minutes (I corrected it) but it was actually 15 and so I wasn't entirely mentally prepared.

Although the time under the lights was easier, my face felt like it was on fire afterwards. Comfort food made by Margaret – shepherd's pie – and one of my little pills took the edge off. While we sat on the kitchen floor with her dogs, Margaret humored me by letting me show her third installment in the Marcel the Shell series, introduced to me by Joe and Katie.

Margaret giggled. I giggled. I do it every time. It can only help. I know I am not alone because as of this minute, it was viewed 2,433,667 times. So here it is, Marcel the Shell with Shoes on, Three.

On a more serious note, it was an incredible day to be in Boston on the day the city's beloved and longest-serving mayor, Tom Menino, died. There was such an outpouring of love, everywhere you looked and listened, even on the Pike, where signs at the eastern end read, "Thank you, Mayor Menino."

Naturally I couldn't take anything for my burning face while I was driving. I made it home, ran some errands and got Maddie from "Aunt Jane" and "Uncle Jim," who now take the same kind of good care of Maddie as Jane did when babysitting my children.

I wanted to see if I could do without another pill, but when I noticed that I was all clenched up in pain I decided that it was time. For Halloween I am playing the role of someone who fell asleep while lying in the sun on a very hot day. Luckily, although the treatment was not fun like a day at the beach, it should have the opposite effect – preventing skin cancer instead of creating it.

Wednesday, October 29, 2014

Specially seasoned, cooked well done

Sometimes it helps me to give funny or offbeat names to the things they do to me – never to the really serious things, of course – but more to procedures at the maintenance level.

For example, I call therapeutic phlebotomy "blood letting," which is what happens when I go every other month to have about a pint of blood removed to reduce the iron overload that resulted from multiple transfusions.

The name game has come to mind because tomorrow I go to Boston for my annual face fry.

The term is actually photodynamic therapy, or PDT, and my dermatologist uses it to treat my face for spots that might turn into cancer. It is definitely better than getting more skin cancers, and by the way  I think I have another squamous cell, this one on the side of my hand, so I will be surprised if she does not biopsy it.

Marinating last year
Here is how the American Cancer Society describes PDT when used to kill cancer cells:

Photodynamic therapy or PDT is a treatment that uses special drugs, called photosensitizing agents, along with light to kill cancer cells. The drugs only work after they have been activated or “turned on” by certain kinds of light. PDT may also be called photoradiation therapyphototherapy, or photochemotherapy.
Depending on the part of the body being treated, the photosensitizing agent is either put into the bloodstream through a vein or put on the skin. Over a certain amount of time the drug is absorbed by the cancer cells. Then light is applied to the area to be treated. The light causes the drug to react with oxygen, which forms a chemical that kills the cells. PDT might also help by destroying the blood vessels that feed the cancer cells and by alerting the immune system to attack the cancer.
The period of time between when the drug is given and when the light is applied is called the drug-to-light interval.

After a nurse covers my face with the chemical, I sit for about an hour and a half, reading a little through the slits in the foil that covers my face. Then the covering comes off and you sit under the light. That part takes 15 minutes and hurts more than the worst sunburn you can imagine. Moving a cold air blower around with your hand helps somewhat in each area that you target.

She is also going to do my lips, woo hoo!

Afterwards your skin is red, blotchy and painful. You're supposed to avoid the sun, so this is a good time of year to do it.

In the past I have had to take something for the pain, but I'll see how I feel. I'll be going to Margaret's afterwards, and maybe the good company and good food will take my mind off of it.

 I'll drive back Friday morning, well done.

Saturday, October 25, 2014

Testing and talking, talking and testing

I was injected with radioactive stuff (like that medical term?) at 10 a.m. yesterday and spent the time until 1:30 at the Dam Cafe, where my friend John Stifler, who teaches at UMass, was nice enough to meet me.

We were due for catching up, and he was impressed by this Northampton-like place in Holyoke.

When I went back for the bone scan, the technician said it was routine to do the whole body for a baseline. I said to go ahead but I was afraid, given my history of surprises, that some unexpected places would light up. I don't think they did or else I would have heard about it, but when he did my feet I saw an area on my left foot light up. I'll get the results on Monday.

There is really no such thing as a person being too nice, but I have to say that the technician gave me a headache, talking loudly and nonstop. He told me he is so hyper he doesn't ever need to drink coffee, and it showed. My only escape was when I went into the machine for my body to be scanned and was able to take a quick nap. I like to chat with people who perform these tests, but there are limits.

The test was in Holyoke Medical Center, where I couldn't help but think of Kevin O'Hare, who was public relations director there and music critic for the Republican and also a talented musician in his own right.

He was so much fun to sit across from at the paper, always so cheerful, coming in with a smile. And when I would call the hospital to see if he could find an expert for me to interview, he never failed to thank me for thinking of the hospital (because many times reporters called the larger Baystate Medical Center).

Gone two years ago at 55, a big loss, the best kind of nice.

Thursday, October 23, 2014

Something to whine about

I thought I did something to my toe when playing tennis on the hard courts last week, but when the pain migrated to the top of my foot, I realized it was more than that.

My podiatrist had a cancellation yesterday morning, so I went bright and early. He said it is most likely a stress fracture in the left metatarsal.

He gave me a compression boot and, like the last time I had one for a stress fracture in my leg, it worked quickly to ameliorate the pain. To confirm the cause, I need to go to the hospital tomorrow for an injection of dye, followed three hours later by an x-ray and bone scan.

I will probably have to leave the boot on for five to six weeks, which obviously amounts to that same amount of time without exercise. I asked about swimming, and my doctor said not even to do that because of the pressure it would put on my foot. I can basically lift weights and do some core-strengthening exercises, not my favorite activities.

Katie asked me what makes a stress fracture heal, and I said basically wearing the boot and whining.

When I told Diane about it, she said a friend had recently reported suffering from plantar fasciitis, and Diane, a fellow past sufferer, told her all the remedies we had tried. We laughed about the fact that I complained more bitterly about plantar fasciitis than I did about leukemia. A stress fracture can have the same effect.

It is already taking its toll on Maddie. She keeps looking at me expectantly, as though she thinks we're going for a walk. But it's hard to navigate with the boot on.

I have already planned a few play dates for her.

At least one of us will get some exercise.

Monday, October 20, 2014

Three days: tales of my toe and other stories

Saturday: I dreamt that my father had come back and was looking great. He was jumping around, and my mother and I told him to calm down because this was his second chance and he didn't want to get sick and die again.

Sunday: I dreamt that my mother came back and looked beautiful with her dark shiny hair that she was about to put in rollers. We were getting ready to go out, and I asked if I could share her bathroom mirror to put on my makeup because it was better than the mirror in our bathroom. (True, it really was.) Plus, the bathroom that I shared with Diane was filled with towels, and somebody needed to do a wash.

Sometimes when they come back I am comforted, but other times like this I wake up so sad that they are not really back after all.

Today: Dream sadness on top of piercing big toe pain. Close to tears. It hurts so much I can barely walk. Last night, rather than sit in pain, I took an oxycodone. I am not supposed to take ibuprofen or any other anti-inflammatories because they thin your blood. I am not supposed to take Tylenol because it is not good for my liver. I know exactly why I never got addicted to "oxy" even though yes, it does make you feel good briefly. I wake up with a headache and take the Tylenol anyway.

I went to Esselon early to finish writing something and also, true confessions, to have a raspberry oatmeal muffin. I called my podiatrist from outside the door because his office hadn't opened when I left.  (Yes, I have a podiatrist in addition to all the other doctors I see. I went to him years ago for a surgical procedure on an ingrown toenail, shown smiling through the pain in photo at right, recovering from the procedure.)

The first appointment was not until Nov. 17. I said I was really nervous about having an untreated possible infection due to my history, and the receptionist said OK, Thursday then.

A man who overheard this conversation said he had channeled his guru, who left his physical body in 1967 but whose spirit was telling my new "friend" to advise me to go to the nearby Cooley Dickinson clinic on University Drive. He wrote out the directions word by word and then listed five podiatrists who might be able to see me the same day if the clinic doctor intervened.

I decided to soak in Epsom salts tonight instead and call my own podiatrist the next few days to see if there are cancellations.

Next stop was the Jones Library to get a book that we are reading for book club: "Empty Mansions: The Mysterious Life of Huguette Clark."  It was on the lower level on the lowest shelf. I got down on the floor to get the book and was pleased to be able to get into a lunge position and get up from there with no problem. (It's the little things.)

I had seen a sign saying Kindles were available to borrow, so I stopped at the reference desk, where a nice librarian showed me how to use one. I am going to read BJ Novak's short stories just for fun. Believe it or not, it was the first time I ever even touched a Kindle.

The librarian said he had just read in a journal that people absorb way more reading print than on a screen. Like I said, I am going to try the Kindle, but I am not going to get one,  just maybe take one out again the next time I fly.

Saturday, October 18, 2014

Annoying little problem

While singing the praises of outdoor tennis yesterday, I forgot to mention that gnats, or some such little thing, were congregating around my face, biting my forehead and every part of my eyes that they could get to.

I kept rubbing my eye, which is the only reason I can think of for the subconjunctival-hemorrhage that the doctor who was kind enough to see me yesterday diagnosed. That sounds more scary than what it actually is: a broken blood vessel in my right eye.

I noticed Thursday night that it did indeed look like a broken blood vessel. When I woke up yesterday, my whole eye was red, leading me to suspect pink eye, although I couldn't think of any place I might have caught it.

My eye stings and burns and would look good for Halloween. But it won't last that long. It should resolve by itself in a few days as long as I don't rub it anymore.

Friday, October 17, 2014

Tennis in the rain, what a glorious feeling

Yesterday might have been the last day for playing outside at the Holyoke Canoe Club, and we came out in full force, eight of us and then six die-hards who played even after it started raining.

We were playing George's made-up game of triples, three against three, which I initially didn't like but which I now understand is good for your doubles game because the balls keep coming, quickly and from unexpected places.

It is a perfect place for tennis: clay courts nestled in the woods, the river nearby, and George's "air-conditioned" court – the one closest to the river – for catching a breeze on hot days. Also, non-competitive, easy on your legs, everyone joking and having fun, complimenting each other, always learning something, sharing a watermelon and exchanging stories-of-the-week during breaks.

So it is hard to say good-bye for the season. We played on for maybe 15 minutes, until the rain that began as a drizzle really started coming down.

Playing tennis in the rain, and also running in the rain, makes you feel like a little kid. Silly, and without any concern except to hold on to your racquet in tennis and navigate the puddles while running.

Yesterday was warm, but next week's forecast calls for rain and cold.

It had to end sometime, but before you know it, George will be talking about putting the courts back together.

You could sing my headline to this song:

Tuesday, October 14, 2014

Fun in Minneapolis

We covered a lot of ground over the weekend: walking around (part of) a lake or two, walking along
the Mississippi, eating out, visiting Dinkytown (yes, the area around the University of Minneapolis is
really called that), drinking coffee (me) and tea (Katie) at Caribou coffee and other great spots in sections of Minneapolis that resembled Northampton on a larger scale.

View of the Mississippi from our walk.
We also went to the Gutrhie Theater, almost missing the play ("The Heidi Chronicles") due to getting stuck in traffic during the Zombie Pub Crawl , which, according to the St. Paul Pioneer Press, broke a world record with at least 15,458 people dressed as the undead gathering in one place, an accomplishment entered in the Guinness Book of World Records. What can I say? I never knew I would go to Minneapolis and run into that.

Best of all, of course, was just spending time with Katie.

My home-away-from-home for three nights was another great find on Airbnb (the first one being the bed and breakfast in Seville). It was exactly 1.3 miles from Katie, a hop, skip and a jump, with "my lake" (Lake Harriet) close to me, and Katie's lake
(Lake Calhoun) a short drive from her.

Nice day at Lake Harriet
It is more expensive to fly from Hartford, so I flew from Logan, where Diane was kind enough to pick me up last night. I spent the night in Newton and then drove straight to Northampton this morning so I could get to at least part of class at the Literacy Project. Then, coffee with a friend; then, stopping at Atkins; then, picking up Maddie, then, taking her for a mini-walk...and then, wondering if I should clean out the car and unpack my bag, but saying, "I'll think about that tomorrow."

Saturday, October 11, 2014

Hello from Minneapolis

I took my mother with me on the plane to Minneapolis, and now I feel that she is keeping me company while Katie attends a program required by Teach for America.

Well, first of all, I am not saying that I actually took her. I took a framed painting – a "Lynne Gordon original" – that Katie wanted for her new apartment. The still life watercolor is an early piece signed  Lynne Lewin in her perfect handwriting.

I was thinking of going to Staples to get packing materials when it occurred to me that I could just wrap it in newspaper, put it in a bag and take it with me as a carry on. First I read the newspaper and then I wrapped the picture in it, proving that the paper is not just good for "fish wrap." I liked the idea of wrapping it in her beloved New York Times.

I prepaid the $20 required to check my bag, but on the way back I can just carry it on.

There were some adorable babies on the plane yesterday, making me even more anxious to see my own, who I can't believe is 22. She is doing well in the first year of her Teach For America stint teaching ESL in an elementary school here.

It incredibly nice here with a lot of cool things to do and see including a lake near her house and another near where I am staying (just 1.3 miles from her, another winner found through airbnb).

I had looked up a restaurant where I could have lunch but ended up at a different place that looked inviting. It is called French Meadow Bakery and Cafe, and its owner is......drum roll....Lynn Gordon.

On the wall there is a framed newspaper story about her, headlined "Risen Star Lynn Gordon."

How cool is that?

We are going to walk around Lake Harriet and then have dinner and go to see "The Heidi Chronicles" at the Guthrie Theater. Fun!