My skin is a mess and my dog was sick all over the place but I made it to another re-birthday

 

This is before the anesthesia wore off

Maddie and I have both had a hard few weeks. I had a biopsy on my thumb, making it hard to write, but it quickly healed and turned out to be a tiny squamous cell carcinoma that could be treated with the chemo cream combination that I use. Harder still was the next week's biopsy on a fingernail on my left hand. My fingernails have turned a gross combination of purple and white, and ridged) white where the nail has died) and the nail specialist in Worcester doesn't know what to make of it. The biopsy itself didn't hurt but it really kills now. A friend said that makes sense because the finger is the part of the body most sensitive to pain.

The results of the fingernail biopsy were...drumroll...inconclusive. Either a flare of graft vs. host disease, which might make sense because I finally got off prednisone, or something called lichen planus. I have an appointment on Wednesday with the fingernail dermatologist and one the next day in Boston with my regular dermatologist. So we shall see. 

I really thought Maddie was in her final days. She stopped eating for three whole days. She also had diarrhea and was vomiting. I took her to the vet. The vet did (very expensive) bloodwork and nothing turned up. I couldn't get a stool sample. I tried everything to get her to eat, and she wouldn't even eat a tiny dog treat. The vet gave her a probiotic, antibiotic, and prescription canned dog food. She is almost 15, and I thought I should tell the appropriate people it was time to say goodbye. I shed some tears.

Give me more food! 

Yet she didn't seem sick. She was drinking and walking. I called the vet to bring her in again and the person on the phone said to try something I hadn't thought of : microwave the food so that the yummy smell might interest her. I microwaved it and put it on my mother's china and put it under nose. And she ate! Now she doesn't want to stop eating. That canned stuff is like doggy cocaine. I am trying to ease in some bland dry food but I don't think I will totally stop the canned food. It has really perked her up. Previously we were able to make it down to the lake (slowly); when she got there, she perked up because there is so much to smell. Now she is even more lively on our walks, especially with Deborah and her two Labs. Her coat even looks better.

A few years ago, someone at a party (in the Before Times) told me with a dog that old, I was living on borrowed time. It was unnecessary... I knew how old she was then and I know how old she is now. But still...

BURIED LEDE:

Today is my 13th re-birthday. It is hard to believe for sure. Thirteen is a lucky number for me. Ben was born on the 13th (of September). I am grateful for Denise, my donor, first and foremost. And for Dana-Farber and the whole rest of the crew who put up with me and helped me get to this point.

 Some people will know that this all started in 2003 with my acute myeloid leukemia diagnosis and spanned two relapses and three transplants before the last one. (Note : Here's why I don't call it a journey though I still don't have an appropriate name for it.)

On Jan. 31st, 2009, I described what I called the momentous occasion and concluded: "Diane brought me a birthday present yesterday: a card with a pop-up bouquet and a bag filled with the other kind of product that I now need after my transplant. It contained shampoo, conditioner, lotion, body wash and lip gloss, all in pretty perk-me-up colors. (After transplant, you’re supposed to start with everything clean and new and throw out old products.) On the card, she wrote, “Here’s to a wonderful and healthy life with your new mystery donor!”

Birthday treat today!

Last night, as the evening weirdness settled in on me, Diane reminded me, “You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.”

It’s wonderful to have a baby sister who anticipates my every need, who picks me up and who washes, folds and delivers my laundry with a smile.

Thank you everyone for your support – your thoughts, prayers, comments, good vibes, messages, calls, visits and cards really mean a lot to me. "

Ditto on the thanks!

Thoughts on being a (sort of) eleven year old

Toasting my donor 

We tend to like the number one, because it is the first of something, and after that, we like round numbers. We celebrate the fifth anniversary of something or the 10^th. At the paper, if someone sent in a press release about the “first annual” such and such, it was one of my pet peeves. I would change it to the first, because how did they know if it was annual yet?

The first anniversary of my stem cell transplant (s) was big. My first re-birthday. I did it twice. (For the other two out of four transplants, I didn’t make it past six months.) I had made it a year! Most restrictions were lifted. I could go places, eat strawberries, sit inside a restaurant. 

Even though two isn’t the round number favored in journalism circles, it’s a big one in stem cell transplant world. It’s when the cancer is unlikely to return. I didn’t make a big deal out of two years, not wanting to jinx myself. I did it twice. I think I might have had coffee with friends. 

Five years was the big deal. It was when I could say I was cured. (Though I never would actually say it myself.) My words: “They say I’m cured.” Doctors don't always say it this way, preferring to maybe cover their bases with “You’re no more likely to get leukemia than the rest of the population. "All the kids were around. We went out to Mulino’s, a favorite restaurant in Northampton, for a celebration complete with birthday cake and the number five. The waitress sang along. Maybe she wondered about the number five, maybe she didn’t even notice. 

A photo popped up on Facebook last month of my seventh “re-birthday,” showing my memory from four years ago of having a cake with Ben and Joe. I assume Katie was in Minnesota. I think we’ve done something on or around the date every year. 

Seventh re-birthday with Ben and Joe

Ten years was obviously super big. I don’t remember what we did, but we did something. Eleven, well, what can I say? It kind of slipped through the cracks.

A few weeks ago I thought about the approach of the 11^th one. The date: January 30^th. For a while we thought it was the 31^st, but Denise, my donor, set the record straight. She should know. We were all in a fog, so being off by a day is understandable. 

Then came the date, Jan. 30^th, 2020. My 11^th re-birthday. I got an email from Denise, with the subject line, Happy Re-birthday, and reading, “I can’t believe it’s been 11 years.  Here’s to many more!” 

It was strange to not have a plan. 

But wait, I did have a plan, just not a plan with the kids.

My friend Diane and I had a coffee date at Barnes and Noble. That’s where we frequently meet. We sat next to each other at my first job at a daily newspaper, at the Transcript-Telegram, aka the T-T, in Holyoke, and then again at the Union-News/Sunday Republican, which morphed into The Republican. We are sisters of the newspaper world. So in a way I was seeing a relative.

Our birthdays are close to each other, mine in August and hers in September. We had already bought each other our birthday coffee. But when we went up to get our coffee, I said to the barista, “It’s my birthday!”

I wasn’t fishing for a free coffee. I just felt like saying it.

Diane said she already bought me my birthday coffee. I explained that it was my stem cell birthday.

“Well, that’s better,” she said. She got me my “re-birthday” coffee. I bought my own chocolate chip cookie.

She had already left when I realized it would be nice to get a photo. A bookstore staffer said she would be happy to do it. I mentioned the occasion and she said she was on the (bone marrow donor) registry but hadn’t been asked to donate. I thanked her and said you never know when a match might come up. 

I took a deep dive and read my post from Jan. 31, 2009, headlined, “New stem cells signed, sealed, delivered.” I can still picture the wild ride I had in the little room. After I got the cells, I reacted, like so: “I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen.”

The night before, when I had gotten anxious, I wrote that Diane reminded me,“ You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.” 

And she was right.

Last week when I told someone about the occasion, I said, "I'm 11 years old and a walking side effect!"

A couple of things to note.

1. I'm walking, which is more than I could say for a couple of months in bed, in the hospital, after that transplant.

2. After everything I've been through, the four stem cell transplants, the graft vs. host disease, the neuropathy, the 13 teeth lost, and the skin cancer that is partially a result of the treatment, I still have my sense of humor. Actually my sense of humor may even be better, because I need it.

10 years ago, it was downhill all the way

Callen and Nell

I haven't been running that much, but yesterday I decided to see how I did with some hills, back and forth to Brunelles Marina. The early registration email from the Saint Patrick's Race committee got me thinking.

A man walking down the road was going faster than I was running. If I were to do it again and didn't want to finish last, I would have to try to figure out how to get a little faster. First of course I'd have to see how I felt going a longer distance. The neuropathy in my feet is not a big help.

When I checked at home, I saw that I had gone 3.8 miles. Then I drank coffee and walked Maddie, for a total of the 6.2 miles, the same distance as the race. Doing it broken up with coffee in between, and a dog walk at the end, would be the way to go.

I thought about how it's coming up on the 10th anniversary of my second relapse of acute myeloid leukemia. Back home, I looked it up in my handy reference, my own blog.

In hindsight I know what was happening. Looking back, I can still feel the grip of uncertainty and panic. Here are some excerpts. Maybe you want more, maybe you don't. If you want the whole post, you can click on the link. For reference, the CMV to which I refer is Cytomegalovirus. It is not dangerous to most people, but it is to people with compromised immune systems like I had.

Dec. 12, 2008, Transfusions and rashes and shakes. I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me. This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

Dec. 16, 2008, Spending some uneasy time in limbo. My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels. I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town. It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

Dec. 18, 2008, Biopsied, transfused, and still wondering. The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture.

Dec. 25, 2008: Downhill all the way. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it. I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon. I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

I had my pity party, and then I put on my boxing gloves.

Through luck, an amazing team at the Dana-Farber Cancer Institute, the strong stem cells of my donor, a little stubbornness on my part, absence of the challenging FLT3 mutation, and a lot of help from my friends and family, I did get to see my children grow into wonderful young adults and I did get to see those adorable grandchildren.

It's hard to believe that it's 10 years after those challenging days.

On National Cancer Survivor's day, thinking of lives saved, friends lost

I didn't know it was National Cancer Survivor's Day until Barbara Shaw Sadowsky – a marathon survivor at 39 years – posted it on Facebook.

It's funny because I had just gone up to Spofford, N.H., yesterday to take a walk in the woods with a cousin (and Maddie) and the topic came up, as it often does, about my own marathon fight against leukemia. It was in reference to the changes in my hair that I wrote about in my MarieClaire.com essay. I told her I thought I looked funny in the French poodle hairdo. She said I had looked great and very alive.

When we were going over the timeline and I got to the point where I said my doctors said a certain great thing about me at the five-year-mark, I had to spell the word instead of saying it, C-U-R-E-D.

She said I sounded just like my mother when she spelled words out instead of saying them, just like me, out of fear of being jinxed.

There are so many times when I have felt like I needed to tread lightly. For example, when I twice hit the two-year-mark when my doctor said I could break out the Champagne, I marked the occasion quietly, having coffee with friends, so as not to send out a signal that I had too much hubris and deserved to be struck down.

At five years, my children took me out to dinner with a number five candle and a chorus of Happy Birthday, but we still didn't say the word. I can say, "They say I'm cured," but I can't say it myself.

My social worker said patients have all sorts of superstitions. One woman had had a good blood test when wearing the same pair of earrings and didn't want to risk changing them the next time.

This way of magical thinking actually sends feel-good signals to the brain, but if taken to extremes can turn problematical. I don't go crazy over it. I just won't say THAT word.

The road is filled with joy, but once you have entered what some called Cancerland it also contains landmines. People who you wouldn't have met if not for cancer die. Your eye catches the cause of death of a person just about your age and it is from "your" disease and it reawakens the shock of fear that you had when diagnosed It doesn't make sense, but there it is.

But let's dwell on the positive.

All the Dana-Farber doctors, nurses and staff, the friends and family who form our "caring circle," the advances in medicine which make it possible for some of us to survive when in the not-to-distant past we would not have,  the helping organizations such as Cancer Connection and individuals such as Dr. Jay Burton, also an AML survivor and the founder of Survivor Journeys, which addressed the lack of support groups locally for survivors of blood cancers, and, of course, the donors and Be The Match, without which we blood cancer survivors would not even spelling out THAT word.

Another night, another relapse nightmare

The thin psyche of a cancer survivor: You hear about someone who had the same disease as you who has relapsed and is now terminal. You go to bed and have a nightmare that it has happened to you.

Someone I knew through our cancer connection had AML and a bone marrow transplant and was 100 percent donor when his blood counts crashed. He was told his cancer was extremely aggressive and, with no further options, he had three months to a year to live. (I asked him on Facebook if he had gotten a second opinion at Dana-Farber because he was not treated at a major cancer hospital; I said I was also in a precarious situation and they came up with something for me. I haven't heard back.)

In the hope that his donor cells wake up, they have taken him off the immune suppressants that you take after transplant to keep your own system from fighting of the donor cells. People wrote that they were praying for him. I wrote that I was sorry to hear the hard news but hopefully his donor cells will wake up and then said you hear plenty of stories of people who were given a short time to live and had surpassed that by many years. (I remember walking around and around the nurses station and talking to my donor in fight song fashion: "Go donor, go donor, go donor, go.")

I had given him the transplant pep talk a while back at the request of a friend. We're Facebook friends, and this is how I knew what had happened.

Last night I dreamt that the exact same thing happened to me. Usually I remember vivid details from my dreams, but all I can remember is the shock of it coming back and having to go straight to the hospital.

I was relieved to wake up and hear Maddie softly snoring on her L.L. Bean pillow at the foot of my bed.

Another virtual friend who I met through our blogs wrote that his Non-Hodgkin's Lymphoma had returned an unusually long time after his bone marrow transplant and he was facing more chemo and another transplant. I wrote that I had had four, so he should keep his chin up. He has a good sense of humor and titled one of his posts, "I'm Not Dead Yet." Assuming he was referring to Monty Python, I shared the song of the same name from "Spamalot." His wife said she listened to it a few times and it made her laugh. It is nice to be useful.

Here is the cart scene from the Broadway production.

Countdown to a birthday

God willing and the creeks don't rise, in seven days I will be 4 years old.

In other words, it will be four years from my transplant on Jan. 31, 2009 – my re-birthday.

Maybe my toddler friends and I should get together and celebrate. PJ would have to come from New York and Ann from New Orleans. We could have a food fight or, more appropriately, give thanks to our donors, those generous souls who gave us another chance.

Meanwhile, I spoke too soon when I wrote in my last post that I was all better. I have gotten sick twice then and am now guaging good days and bad days according to whether I throw up or not. I am still waiting for results on the biopsy done during my endoscopy.

One way I can tell I'm not quite right is that I haven't had coffee in two days!

I take Ativan for nausea...and then end up on the couch and in my head. Yesterday I thought I would at least take Maddie for a walk. It is so cold out that we didn't go far, plus she was bad and wouldn't come when called. I turn the heat way down at night, and at least she redeemed herself this morning by sitting close to me on the couch and sharing some of her natural heat while the house warmed up.

I did go to George's tennis clinic last night. We rotated three against one, and I thought I was pretty smart to skip the rotation where I was alone. George kept telling me to move my feet. Always excellent advice and something I am extra aware of after watching the Australian Open. On the other hand I was afraid of jostling my insides. I ran to the bathroom, got sick, and then, truth be told, finished out the clinic.

I might go to restorative yoga tonight. I figure I can't possibly get sick there, when all you do is basically lie around. I was skeptical the one time I did it, but it actually was very restorative.

On another note, I stopped taking Neurontin, which I have been on for a long time to control the neuropathy in my feet. I wanted to see if the tingling and prickly feeling had gone away on its own, but I'm sorry to say it is back. The Neurontin never made it totally go away, but it did dull the symptoms. Now I am waking up to needles in my feet. Melissa said it's optional whether I go back on or not. It's always good to get rid of one more pill and and one more set of side effects, but feeling like you're walking on pins and needles is no fun either. I think I'm going to stick it out a little longer, and if it gets to be too much I'll go back on.

Well, at least the pill is a nice yellow color and adds variety to the colors in my pill box.

Thanksgiving

If you've had a bone marrow transplant, on Thanksgiving you're probably like me, feeling grateful for our  donors, those incredibly generous people who gave us another chance at life. Not that we aren't grateful every day, but when we pause to give thanks for everyone we love and all the good things we have, our donors are right up there at the top of our list.

So a shout-out to Denise. Today on Thanksgiving I am thinking about you.

Our Thanksgiving was different this year. Instead of having it here as is our tradition, Joe and I went to Ben and Meg's in Stamford for a dinner bringing together parents and siblings from both sides of their families. I brought my mother's beautiful serving pieces, symbolically placing my mother (and my father) at the table. Katie was there too, via Skype in Spain.

Everything was wonderful, from the delicious food to the turkey-shaped butter to the festive mood centering around Ben and Meg's upcoming wedding. I enjoyed talking to everyone, including to Jane, Meghan's mother, my future machatunista (Yiddish for the mother of your child's spouse).

It is in many ways a difficult time of year. My mother died six years ago on Nov. 26. Right before Thanksgiving I had been in New York, and I was torn about whether to stay or to go home and have Thanksgiving with my family. My mother was fading fast, in and out of consciousness and unable to get out of bed, so it would have meant sitting in her  room with my aunt and my cousin.

She told me she wanted me to go home, so I did. After she died I thought I would never stop crying, of course about her death but also from thinking I should have been there for Thanksgiving. My cousin Joanne told me that I had given my mother the best gift possible by complying with her wishes and allowing her to think of me at home with my kids.

I don't have regrets anymore, just good memories and the feeling that they are still here. So I am thankful for that too.

Scary news in the night

About a week ago, I received my donor's name and contact information. Previously I knew only that she was a woman. We could correspond, but our letters were censored.

I stuck the slip of paper on the fridge and kind of circled it for a few days. I liked looking at it and imagining what this person, who was now part of me, would be like. I would write soon. She beat me to it. I don't want to violate her privacy by saying her name. Let's just say she is a woman about my age who lives in New Jersey.

Naturally I feel grateful towards her. I wanted to hear more about this generous woman. What she had to say made me almost fall out of my chair. Actually it sent me straight to the Ativan. Turns out she hadn't known when she donated that she had breast cancer. But she found out shortly afterward that she had it then and she has it now. It hasn't spread to her lymph nodes, and her prognosis is good. She said her doctors said she probably hadn't hurt me. They passed the info to her local transplant center, but I don't think it made it any further.

She's currently undergoing treatment and is doing well.

WHAT? Rational Ronni, who was far away at the moment, might have signed off with a "glass half full" sceniaro. Now the other me...First let me not beat myself up too much, because, hearing this for the first time, most other people would be very distressed. I went right into catastrophe mode: how ironic, how sad that I could get another disease from the transplant and get sick and maybe die from it. The tears began to fall. I wrote Dr. Alyea and Melissa and went to bed.

In the morning, Dr. Alyea's e-mail awaited me. He said he had no concern that my donor's health problems would affect me, and that he wished her well.

Phew. I hope to be in touch with my donor again and think of ways that I might be able to help her now. None of this, of course, was her fault, but she sounded guilty and scared. Actually, that's how I felt too: guilty about looking at it all from my point of view, and scared about how it would impact me. Oy! Stop!

I felt perkier as the day went by. After school, Katie went for a run. Standing outside in the sun, I decided to do the same thing. So I "jogged" down the street and back. A friend driving past me pulled in the driveway, got out and congratulated me. Did I look like I was really running? I asked. Yes! she said. Yay!

Gotta take the dog out and maybe throw in a small jog, maybe not, depending on how I feel. The sun is shining, and life goes on.