Saturday, January 30, 2016

All of this really happened

When talking to Dana-Farber's assistant VP for Gift Planning Alice Zaff at the recent Chefs for Jimmy, I told her I would send her the link to what Dr. Alyea and Melissa wrote about me in the fall 2014 e-newsletter, Advances in Hematologic Malignancies.

I directed her to the second link down, Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML).

There, she would see my story, starting with my diagnosis in 2003 at age 48 after unusual fatigue during the Saint Patrick's Road Race.

I won't repeat the whole megillah; you can read it if you want by clicking on the second link. When I reread it, certain things jump out at me: the nearly four years in remission after my first transplant; the relapse in 2007 (not included in their telling was the fact that Korby and I had just won at the Districts); transplant #2 with an unrelated donor (allogenic transplant) ; and six months later, pancytopenia (empty bone marrow), followed by transplant #3.

Picking up from there, they wrote: "Six months after her second allogeneic transplant, the patient's peripheral blood counts again declined. A repeat bone marrow biopsy demonstrated second relapse of AML. She was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, and did not re-emerge for four months. She underwent another induction chemotherapy with a high-dose cytarabine-based regimen and had multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed. Other complications included delirium and severe edema."

They didn't even get around to talking about the kidney failure and the coma.

It was during that stay that I received my fourth transplant, on Jan. 31, 2009, with a different unrelated donor (Denise).

Today when I looked at a bottle containing 300 vitamins at Costco, I said to my friend, "I don't know if I'll live that long."  That kind of "joke" still comes out of me reflexively. After I hit the five-year mark, I was no more likely to die of leukemia than anyone in the general population, but once you are afraid for your life in the way that I was, it doesn't totally leave you.

God willing and the creeks don't rise, tomorrow I will go to Fairfield to celebrate my seventh birthday, or re-birthday, thanks to Denise and Dana-Farber.

Friday, January 29, 2016

A moment of panic, then, just more of the same

What would you think if you looked up the results of a biopsy of a spot on your face and you saw the word "invasion"? Even if it said "superficial blunt-type invasion," wouldn't you be worried? Especially if you had a friend who died after a squamous cell cancer on her tongue spread to the rest of her body?

I was definitely worried when I went to PatientGateway to see why I got an email saying I had a message and then looked up the results from my two biopsies of a couple of weeks ago. Dr. Lin said she would call me with the results; when I didn't hear I figured no news was good news, but then a friend said I should really call, so I was about to but then I saw the test results. It was the first time in all these years that I slipped through the cracks.

Here is what I read:


Part of an actinic keratosis, focally at least bordering on squamous cell
carcinoma in situ.

Part of a SQUAMOUS CELL CARCINOMA, at least in situ.
It is difficult to exclude very superficial blunt-type invasion.

It was early in the morning. Luckily I had the doctor's home address, so I emailed her at home and at work to see what this meant. The words "very superficial" sounded OK, but not coupled with "invasion."

She responded right away, saying she was so sorry she hadn't called and that although those words that I mentioned sounded scary, it isn't that bad but it will need Mohs.

"The nose is ok. Blunt-type invasion sounds like a scary word, but blunt-type is the least worrisome type of invasion. All in all, it’s a pretty low risk lesion, but to be safe, I will be sending you to Mohs."

Mohs is the surgical removal of skin cancers. I have had it before in many places. This one will be on my cheek. The bright side: It is not the one on the top of my nose. It is a better place than two of my others: One on the top of my lip and the other practically on top of my tear duct, which left a hole necessitating a visit to a plastic surgeon who took a piece from my eyelid to cover the hole. She said I was getting an eye lift. I asked if she could even me out by doing the other side (joke) and she said no. I had one on my neck and one on my wrist, also.

I need to make an appointment for a consult with a Mohs surgeon in Boston. 

Another fun thing: In a couple of months I am going to return for another session of the face fry that burns off the top layer of skin and with it the spots that can turn into cancer or that might be early cancer. I have some on my neck, also, so PDT, or photodynamic therapy, will extend onto my neck. This treatment uses photosynthesizing agents along with light to kill cancer cells. It burns worse than a terrible sunburn. Holding a little fan in your hand and waving it around helps, somewhat.

So the year that came off my life when I saw the word "invasive" will be returned to me when I get my new skin.

Tuesday, January 26, 2016

Countdown to my seventh birthday

Five days to my seventh birthday.

The other night I dreamt I was climbing up a steep set of stairs. I was wearing a pair of old flip-flops that were falling apart. The left one especially was in bad shape, and it kept catching on the stair. Also I was having trouble lifting that leg up to climb to the next step. I wasn't sure I would make it.

But then, all of a sudden I was on the top landing. I realized I just had to put on sneakers and I would be fine.

Dream analysis 101: It is hard getting to be where I need to be, and I am worried that something will trip me up, but I realize that I can do it...especially if I have the right kind of sneakers, which is a big theme for me because I'm always trying to find the right kind to keep my toe from hurting and my plantar fasciitis from flaring up.

So maybe all I need to do to make it to Sunday is to wear the right shoes.

But first, I have to get through tomorrow.

I told the supervisor at that horrible Westfield Transport to never ask for me again after the fiasco of two weeks ago. He said OK, but when I got the automated call stating the service that is picking me up tomorrow, it is the same company. Nothing I can do about it now.

I have a double header tomorrow. Dr. Goguen in head and neck oncology at Dana-Farber at 1:30, followed by ECP at 3.

Since Dr. Goguen is only checking my tongue every year now, I asked Dr. Alyea if he and Melissa could just do it. He said no, because she can see things they can't see. So I made the appointment. Then she canceled and rescheduled. And canceled again. I told her nurse that my doctor really thought I should see her, but she said Dr. Goguen had too many things going on to schedule routine appointments. It was a little dissonant to be told by my doctor that I needed to see her and then be told by her office that she couldn't fit me in. I can't remember exactly when the original appointment was, but I think around six months ago.

This was the surgery in which she removed precancerous cells from the left side of my tongue. I'm not really worried because Melissa, Dr. Alyea and my dentist said it looks fine, but still, I would like to hear it from her.

I'm going to have to stop using my left arm at ECP. I like to have my right hand free if I'm using the computer or trying to read a book, but, judging from the trouble I have had with the vein in the left arm the last two sessions, it must have developed scar tissue. It wasn't so bad after my nurse the last time gave me five milligrams of Ativan and five of oxycodone, but I would rather not have the pain in the first place.

Saturday, January 23, 2016

(Sort of) back in the swing of things and trying something new

On Wednesday after I went back to the round robin in Enfield for the first time in a couple of weeks, I did something new.

I slept through the haircut that I got later in the day. Part of my fatigue came from returning to activity after pneumonia and part was from skipping my morning coffee because my stomach was upset.

You can definitely lose a lot after just a couple of weeks out. Or maybe it was three. I don't remember exactly. Especially at a "certain age."

A few days earlier I had gone back to yoga. I took it easy, telling the instructor that I might go into child's pose. Even so for a few days after, my arms hurt.

I usually like to do some kind of exercise every day, but I didn't want to push it. On one bitter cold day I thought of going to an exercise class at the Y but thought better of it. Maddie was glad.

On Thursday I finally gave in and tried Pickleball at the club. I had kept saying I didn't want to do it because I couldn't see the exercise in hitting a wiffle ball on a small court. Then I realized I couldn't say I didn't like it if I hadn't tried it.

Extra racquets were available for us newbies, and after trying it for a while, I could see that if you learned the rules and figured out how to hit the ball (especially the serve), it would be fun. You have to learn to stay out of "the kitchen," the area next to the net, except for a short amount of time, kind of like the zone in basketball.

Almost 30 of us were there, with play on four courts and people waiting to come in. I learned  how Pickleball came to be and read afterwards that it got its name from the family dog, like so:

"The sport was named after the the family cocker spaniel, Pickles, who was a canine of one of the co-inventors of Pickleball. Pickles chased stray balls and then hid in the bushes, so they named the game after him."

A sport named after a dog is a good sport.

A few of us watched some of the advanced players, who were really making the ball fly back and forth. I didn't realize how popular it has become. Some people play every day at various locations. I wouldn't want to do that, but I signed up for this coming Thursday.

I thought I was doing more listening than exercising, but still, as soon as I got home and pulled into the driveway, I fell asleep in the car.

Being sick for that relatively short amount of time definitely took its toll.

Monday, January 18, 2016

Off, off, damn spots

I have been telling people that I had a nose job as a way of explaining the bandaid across the bridge of my nose. It is near the spot where you usually got a pimple right before a date in high school. It is making me cross-eyed.

It is covering a spot I had biopsied at my visit to the dermatologist on Thursday. She also biopsied one on my cheek as a possible squamous cell cancer. I have had these before. It is par for the course. (Now that I write that, I am wondering what it really means, but it sounds fitting.) I hope I don't need a Mohs surgery on my nose. I'll find out this week.

A young resident actually did the biopsies while Dr. Lin supervised. I forget her name. Something with an R, so let's say Roberta. She called me ma'am. I said to please call me Ronni. She said, "You can call me Roberta." I'm not sure why this annoyed me, but maybe it's because she looked like she was about 10 years old.

She came in first to examine me and look at all the raised spots on my hands and also at some on my wrists and neck. I told her I was applying a cream called Carac once a day. I have so many creams, I forget what I am supposed to do with which one. When Dr. Lin came in and "Roberta" gave her summary, she said I told her I had applied the cream once. Jennifer – Dr. Lin – said that wasn't going to be very helpful. "I told her once A DAY," I said. Like I said, annoying.

Jennifer said I could hold her hand while the resident did the biopsies. I said I wished she could transplant her smooth hands onto me. Afterwards, she froze some of the spots. When they heal, I am going to apply a stronger chemotherapy ointment called Efudex to my hands and my wrists. It is going to turn them bright red but hopefully will help clean them up. This is important because the spots can be precancerous.

For the same reason, she scheduled me for another photodynamic therapy, or PDT, for my face. That is the procedure that basically fries the top layer of skin, which later peels as though you have had the worst sunburn. I said I wished she could do it on my hands. She said they could, but the ointment will work better.

Even though I am on a small amount of prednisone – 1 milligram a day – it seems to be the culprit. Melissa said my liver enzymes looked stable so when I go back to see Dr. Alyea in two months I will bring up the subject of stopping the prednisone. Again. Bringing it up doesn't mean getting off it. But we will see.

With all the serious side effects and other problems that people have, I feel silly stressing about my hands. Maybe it is because they are right in my view and it is hard to not look at them. They are the only sign that something has happened to me. The sun exposure from playing tennis doesn't help. I lather on sunscreen and even bought sun protection gloves but I probably didn't wear them enough.

Sometimes when I'm stressed (I'm sorry, this is gross), I don't even realize that I am picking at them. When Katie catches me doing it, she says, "MOM!" I have been told that people are not staring at my hands or even giving them a thought. I'm sure that is true. Trying to let it go. Maybe I'll start a new trend of going back in time and wearing ladylike white gloves...with my tennis skirt and sweatshirt.

Saturday, January 16, 2016

Was it a good dream or a bad dream?

In my dream, my mother died before my father. That wasn't the way it's supposed to be.

I was worried that he would be unable to take care of himself. I went to the apartment to talk to him. He was so unsteady, I worried he wouldn't even be able to make it to the store. I suggested he get rid of the apartment so he could come out here and hang out with the other elderly men at the JCC. I told him I had seen them congregate in the lobby, where they seemed to be engaged in lively conversation. He said he wasn't ready.

Meanwhile, my mother came back to tell me it would be OK. I asked her what she did when her own mother died. She said she let herself feel her feelings. Some days she was sad, but on others she was fine. I love it when she is sitting right by me. I like to believe she is really there.

On another topic, I dreamt I had to leave work (at the newspaper) for what I thought would be a quick visit to a doctor. A previous examination had suggested the possibility of breast cancer. (I had read a story about someone undergoing treatment, and my porous cancer-sensitive mind absorbed it and must have stored the fear that it could be me.) After two hours, I still had not been seen. I tried to text Mimi back at work to say what had happened, but my phone wasn't working properly. I never did get in to see that doctor.

But then I realized it didn't matter how long I was gone because the paper was closing in one week anyway, and nobody cared what we did. Still, I wanted to finish up a couple of stories. I went back and found some newspaper peeps and said how much I was going to miss them. I suggested we make a group email and send it out so we could try to get together in a year. Somebody said that wouldn't work, and I realized it was a far-fetched idea.

People were wondering what they would do next. Realizing the end of the paper was near, I had sent out some queries and had been offered a news writing job at the Hartford Courant. I told somebody that I was afraid I would end up covering meetings while all I knew about was writing features. The person said not to worry.

Cancer relapse/technology trouble/parental dying/newspaper nightmare all in one night.

But on the positive side, my mother came back to tell me it was OK, and I had a job.

Thursday, January 14, 2016

After appointments on two days, a mixed report

The good news is that I have something to be upset about that is not as serious or sad as what has been going on recently, and that I have more crazy car service stories to tell, and that I think I have finally been able to get rid of Westport Transport, the company that has been giving me so much grief.

They took me to Boston yesterday for my checkup (platelets 240, yay) followed by ECP, and were supposed to bring me home today because I made back-to-back appointments and stayed overnight at Margaret's so that I could see Dr. Lin, my dermatologist, today.

Last night when I got the call from MART, which provides rides to patients making trips throughout the state, the automated voice said, "This is MART, calling to remind me of your pickup tomorrow at 11 a.m. for your appointment at 1 p.m. Thursday, Jan. 14."

When I called the vendor (Westport Transport), to say it would not be possible for them to pick me up in South Hadley because they had already brought me to Boston, the dispatcher or owner or whoever answered said to call back tomorrow (today), they were already done for the day. When I called back this morning, he said he couldn't afford to take a one-way trip.

I said they had done it yesterday, why not today, and since they had placed a bid for me they better get me home. He said to call MART, it was their mistake. After I waited on hold for 37 minutes, the woman who finally answered the phone put me on hold while she checked with the vendor. When she came back, she said that she would find another vendor because Westfield Transport was going to double its rate. I said that my appointment was at 1 and she said to put in a 3 p.m. pickup for my trip home because that would give her plenty of time to find someone else.

Dr. Lin froze more than a dozen spots on my hands and neck and then biopsied two more suspicious looking ones on my nose and cheek. With my face stinging, I went downstairs and used the automated system to check on my ride. It said I would be picked up by my old nemesis, Westfield Transport, the one that had refused to take me, at 3.

When I called the friendly dispatcher to find out if this was true, he said MART had canceled the trip to find another vendor but had been unable to find another and so his company was being kind enough to send someone from Springfield (he had just left) so that I would not be sleeping overnight in the lobby of the doctor's office.

My new driver arrived around 4:30. From the the car, I called the owner and asked why he had made such a commotion about bringing me one way when he had done it the day before. He didn't have a very good answer for this. I took the opportunity to tell him to NEVER place a bid for me again because I will have my tank full of gas and decline the ride. He said FINE.

Some people have asked me why I don't just drive myself since it is usually a hassle. I have done that occasionally. But I usually return to my original reason: It saves me money and the wear and tear of driving and the risk of getting sleepy at the wheel.

The driver regaled me with stories about the addicts he drives to methadone treatments. He said he could write a book. Most say they want the extra high and plan to keep on using. Some say they find  ways to get medical marijuana to double the fun.

After we got off at the Ludlow exit and were driving through Mount Holyoke, I told him to look out for students.

"A thousand points if I hit one," he said. I asked, "WHAT?" He repeated it.

I went straight to get Maddie out of the Pet Hotel, where she stayed because Jim and Jane are on a cruise. It was nice to see her. When I came into the cold house around 8, the smoke alarm was beeping. It needed a battery.

So that was my day.

Sunday, January 10, 2016

Drinking coffee and pondering

Something (relatively) great happened yesterday.

After Maddie wakes me up, which is between 5:30 and 6 a.m. and if I am lucky, 6:30, I usually just get up. (It doesn't work to tell her to go lie down because it is one of the only times she ever barks; she keeps turning her head to the door and will not give up.)

I like to sleep with the room cold. Yesterday morning I turned the heat up, put on my sweatshirt, got under the quilts, read a little ... and then fell back asleep. I didn't get out of bed until 9. I can't remember the last time I did that.

Thank you everyone for the kind words on the post about the suicide of my cousin's daughter. For the record, she was my first cousin once removed. That sounds so technical, so I call them all cousins. It is still hard to believe that one week I was making plans to stay in touch and sleep at her house next Hanukkah, and then so soon after, she was gone.

Today I was back on the old schedule. Woke up early and couldn't get back to sleep. But I am making banana bread and drinking coffee, which is also (relatively) great because I was upset that I had lost my taste for it and was drinking tea, which just doesn't do the trick.

A friend came over the other day and brought me a soft infinity scarf. I had fun looking up all the ways to tie it. She asked if I had any food in the house and I started crying and said no, not much. She said (kindly) to snap out of it and give her a list. She said I should ask but I don't like to. I have gone out a few times to grab some things.

At the same time, another friend came over bringing a scone and a puppy for Maddie to play with. My dog has picked up my vibes and has looked at me anxiously as I pace the house and shed tears. I'm sure she was glad to have company, as was I. Also, it was nice to get texts and phone calls.

I have not exercised at all except for taking some slow dog walks, which I need to do because as I said previously, Jim and Jane are away. I feel like I need to move my body and am considering going to a yoga class this morning at the Hampshire Regional Y. If anything gets too stressful, I can go into child's pose.

My chest still hurts, but Melissa (via email) and Dr. Berger (via phone) said that will probably last for a while and not to worry about it as long as I no longer have a fever and am feeling better. I have an appointment with Melissa Wednesday before my ECP, and I am glad for that.

Jennifer's twin, David, has become a Buddhist and is finding great solace in his faith. He wrote, "If you want to say a prayer for her, please say the prayer, then chant Nam-myoho-renge-kyo three times." I looked it up and found this explanation.  A friend told me that Tina Turner's adoption of Nichiren Buddhism helped her get the courage to leave her husband. You can hear her chant it here, if you want.

Next Saturday David has planned a Buddhist memorial service in Queens. I would like to go. But it might be too much for me to drive all that way, especially so soon after having pneumonia. Also, I will need a place to stay because I can't drive alone both ways in one day. And I don't know where that would be. My only bad experience with airbnb was when I stayed at one in Riverdale over Hanukkah, so although the price was good, I wouldn't want to go back there. I will be taking a poll. I imagine most advisors will say to send my love and stay home.

Thursday, January 7, 2016

Sick and heartbroken

I have been feeling under the weather and coughing but not too bad until over the weekend I got a low-grade fever and called my doctor's office where the physician on call said it was probably viral.

But when I went in to see Dr. Berger on Monday and told him my chest hurt he said that given my history he would give me an antibiotic, Levaquin. He sent me for an X-ray which later in the day revealed I have pneumonia.

It is not terrible like the time two years ago that I had to be hospitalized, so I have been going out a little to do some things I need to do. For example, Jane and Jim are away so I have to take care of my dog. I called Joe to see if he could come home this weekend but he had plans, so I had to go to the store. Without my exercise-induced endorphins, I feel mentally as well as physically crappy.

Jennifer Sack
I came in on Tuesday so see this post on Facebook: NYPD Wants Your Help Finding Missing Bronx Woman.  I wrote WHAT? because I saw that it was my beautiful cousin Jennifer, 37 and a twin – actually my cousin Peter's daughter, technically my first cousin once removed, but to me they are all cousins – and I had just talked to her at our Hanukkah party in the Bronx. We had such a nice talk and she had said I should stay with her next year. She looked like a model. I had no idea that anything was wrong, but the story said she was depressed. Her cousin sent me the link. She had been missing since Sunday.

She sent her parents an email with the heading "I'm sorry," saying she was going to jump off the GW bridge. She left a long suicide note. I was hoping that she was wandering around and had rethought it or that somebody might have stopped her. Apparently it is way too easy to jump off this bridge, with someone attempting it every 3.5 days and only a waist high metal guardrail. A story stating that an anti-suicide fence was planned by 2024 raised the question of why isn't there one already. Talk about scandal and the George Washington Bridge. It is a scandal that suicides off the bridge are on the increase and that people so distressed and vulnerable know how easy it is to do.

Her body was found yesterday near the Manhattan side of the bridge. I keep looking at her picture and wondering how that could happen. She was so beautiful inside and out and so full of life. I remember back in our apartment in New York 37 years ago pacing the living room and looking out the window at Mt. Sinai hospital where their mother, Diane, was in labor, and wondering when the twins would be born. They were so cute growing up and such nice adults who I always tried to see on holidays. To lose a twin must be almost unbearably hard.

I would like to share my sympathies with the family at the service on Sunday in New York, but I will not be able to go. So I will have to send love.

Friday, January 1, 2016

Drying up my tears

When I cried two times in one week:

The first was Wednesday, when the needle in my arm hurt almost from the beginning of the ECP that I have now graduated to doing every other week, and no amount of adjusting with pillows or the 625 milligrams of Tylenol and the 5 mgs. of oxycodone helped. Tina said she would try another needle, but I kept thinking it would get better and I didn't want to get stuck again, so I stuck it out. The drugs finally kicked in right at the end of the three hours. This doesn't usually happen. She said next time she would try a different vein.

I had the same bad car service but this time they sent a good driver. I told him about all the complaints I had filed and he said that their boss does indeed give too many pickups at the same time. For example he said he got six pickups for 1 p.m. on a certain day. Another driver called to ask if he needed help, but he said he had already done them all by calling each one and asking if it was OK to pick them up a little earlier. That wouldn't have worked with me, because I played tennis and had coffee with Donna until the last minute. He said I should ask for him, but, alas, it doesn't work that way.

Yesterday I cried when remembering all the New Years Eves when the kids were home and we made sundaes with all kinds of toppings and watched a movie. This was a case of true empty-nester-itis. Katie was home and she gave me a hug. It was her idea to eat 12 grapes, one for each month of the year, and to say something good that happened in each one. It was easy to find something good in every month, and this cheered me up.

I was having a post-New York-trip letdown, having breezed in and out on Monday to see Fun Home on Broadway (Tony Award winner and a great show) and to have dinner with Jeanne, Bruce and Amanda, and to see Aunt Marge and Bill, and to stop on the way back via Metro North railroad to Fairfield, where Ben picked me up in my car and we had lunch.

When I got home Tuesday with about half an hour to change for the retirement party for six friends leaving the newspaper, I saw that the driveway and steps were coated in ice. Temporary pity-party ensued because there was no Joe to have taken care of it. I skated over to the garage, grabbed a shovel and made some indentations so I could walk without slipping, then sprinkled pet-safe ice melt around and thought for a minute about canceling but went on my way and was glad that I did because I loved seeing so many friends from the paper and wanted to wish the retirees well.

Before I left, I called Adam, Ben's high school friend who lives across the street, and asked if he could shovel so that I wouldn't kill myself upon returning home. He has been nice about helping me with some things that Joe used to do before he moved out to start a new job in Fairfield County. After four years of living at home, it was time for him to go, but did I say I cried the whole day when he was packing up to move out? I miss my roommate.

Most people in the world should have such "problems."

Reminding myself of this, I got a grip.

My kids are all great and are leading productive interesting lives. And I am alive to see it happen.