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!

It was my re-birthday and I forgot all about it

Nobody can deny that many things have made it hard to concentrate and along with that, easy to forget.

Election, insurrection, inauguration, crazies in Congress, and of course, COVID. As a person with what one friend jokingly called "50 co-morbidities," I have been worried about the slow, and some say, ineffective, vaccine rollout in Massachusetts, the supposed pinnacle of healthcare in the country. Friends and relatives in the 65 and up group in other states have gotten their first shot, while in Massachusetts, Feb. 1 marked only the beginning of 75 and over. I have gotten on some waiting lists in the area, and Dana-Farber is going to vaccinate transplant patients. But it's unclear when it will happen. 

I was upset when the state for some reason moved those with two-plus co-morbidities down a rung. People ask, "Haven't you had that vaccine yet?" as they did when I was two weeks overdo with Ben. ("Haven't you had that baby yet?")

One of my doctors said we are 30th in the nation in terms of the rollout. Sheesh. 

On the other hand, I am well aware of vaccine inequities throughout the country, and throughout the world, with people in crowded living conditions not even knowing when they will have access to a vaccine, so I could, maybe, possibly, stop whining...

But wait, we have a new president! What a relief to see someone capable and sane in the office, from top to bottom. And press briefings with no insults! 

On inauguration day, I was nervous and excited, like I was anticipating a big party but afraid someone would crash it. In total, with running and walking, I did about nine miles. I don't usually admit it, but I think I overdid it with the five-miler in the morning. Stamina-wise, I could do it, and I got those endorphins that you don't get in a shorter run. But my knee started talking to me, sending some twingy signals. It is OK but I don't want to bust it. I need to save it for tennis season...and shorter runs.

Bernie in front of my house

And I got to be on the Bernie meme train. So much fun to have something to laugh about and be proud about instead of what could have been a day of tears. 

So wait, what did I forget?

I wrote this post about getting confused about my birthdays. I remembered my first birthday...and then forgot that Jan. 30th was my 12th re-birthday.

When Ben texted "Happy birthday," I had to think about it for a moment.

Then I checked my email and saw that Denise, my donor, had sent a happy re-birthday email.

Then I thought, wow, how strange to forget. I guess in a way it is good for it to not be such a focus. Frankly it is hard to remember which day or month it is. There aren't the same markers, such as tennis on certain days, then Starbucks or the Thirsty Mind, locally, and other places, for writing. It was much easier to finish something if I told myself I was going out to write somewhere and NOT coming back until I finished.

The Zoom yoga and fitness classes are some kind of marker, but they are all in the house, so it is not the same thing.

It just so happens that on Jan. 30th I had talked to both Diane and Margaret, who were both by my side through it all. We hadn't mentioned it, but maybe the universe invited me to call them.

On that day, it was freezing, and I had gone for a shorter run. I "instagrammed" a photo of me wearing the neck warmer that Joe gave me. 

Afterwards, when I remembered, I texted with Diane and Margaret about the transplant day and the events following the transplant, when I was hanging on for dear life. Feb. 14, "coma day," ... Feb. 22, the day Dr. Alyea called the troops and said I might not make it. 

It is good to remember, but not also so bad to forget.

Birthday and beach day good, foot pain bad

I had a great pre birthday, birthday and post birthday followed by a bad foot day. The bad day turned into more. Something re-activated the dreaded plantar fasciitis, making me a bore to anyone who hasn't suffered from it. One of my tennis buddies had it so badly that she had to skip tennis for a while and go to physical therapy. In between games on the court, she showed me some of her stretches. I feel like I know them all...I actually threw out my boot because I was done with it. The moral might be that even if you have a dumpster in your driveway, never throw anything out.

I have been going to the chiropractor and have contacted my orthotics guy, Ken Holt, because I wonder if it's just a matter of getting new orthotics.

A friend said he couldn't keep track of my birthdays, and I understood. One original birthday and four re-birthdays. 

It was great to have the three kids and one cute little boy at my house for the pre-birthday. We ate outside and were going to stay outside (because, COVID) but Callen wanted to go in. We thought of not doing it but all of a sudden we were all inside. We spaced out and that was a while ago already so I figure it was OK. I loved seeing him at my mother's piano next to one of her paintings.

On the real birthday, I played tennis and went out to eat with Boyfriend, for the first time. People said that 30Boltwood, in Amherst, does a good job, and they were right. 

A couple of days later, I got to go back to the Fairfield Beach Club, where I had great success in getting Callen's little shoes on him while Ben was busy with Nell. Callen had eaten a Spiderman pop and got more on himself than in his mouth. I suggested we go wash up. He took my hand and we headed off. That little hand in mine was worth the two-hour drive. I thought we were going to a certain bathroom but he led me to another room with a big sink in it. I picked him up and turned on the water, which he seemed to be trying to catch in his hands. 

This of course makes me think of doing the same thing with my little kids.

At the end of the day I enjoyed a swim in the calm Long Island Sound. I miss seeing the ocean at Cape Cod, but I think it was Katie who pointed out to me that since I'm not allowed in the ocean, this is a good fit for me. Ben pointed out that there were also no sharks.

If you don't care about feet, you can stop here.

 On top of that, my neuropathy, which has been pretty tame, has gone on and off crazy. The other night, I felt like my feet were electrified. I don't post too much in FB groups such as Our Neuropathy Friends, because everyone is going to have a different opinion. But if a lot of people have the same opinion, for example on a kind of CBD that is effective, I might be interested. That group is recognized by The Foundation for Peripheral Neuropathy, by the way, 

Hello! I haven't posted in a while because I've been doing OK, meaning, a low buzz in my feet but not that bad. 900 mgs of gabapentin twice a day, or an extra 300 if I want. I don't know what happened. Maybe it's the rain that is coming. My feet got totally electrified, on top of a return of plantar fasciitis. A while back I tried CBD, THC and a combination and was never that happy with the results so I stopped. I was just staring at some chocolate that is 1-1 and wondering if I should take a nibble but I didn't. CBD doesn't really do anything and THC makes me a little stoned, even if I take a little/ I guess it works to take your mind off the neuropathy but I've kind of been there done that with that feeling. As you all know it is very upsetting. I took 5 mgs of oxycodone before. Now it has worn off. Ibuprofen has a bad effect on my kidneys and Tylenol of course is bad for the liver. I put CBD cream on my feet and that helps a little. I guess my question is whether people have had good luck with CBD. The kind I have now is made by Good Body Products in Vermont, for what that's worth.

Mostly it was good to get a little support.

"People that dont deal with this problem have no idea of how debilitating and relentless it is," one said.

Mostly they are doing the same as I am, rubbing different things in their feet. One said he had it so bad that he had to stop work and apply for Social Security Disability.

Someone said capsaicin in a gel, but I put that on my toe once when I had problems and it burned my skin. 

But then after a string of bad foot days I had one of my best tennis days ever. So in conclusion it's hard to figure.

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.

Of bad dreams and an approaching birthday

I dreamt that I went to the eye doctor and found out my vision was bad. Not only that, the visit extended into a full check up in which something turned out to be very wrong. The doctor said I didn't look as good as I used to and asked if I was eating well. He said I should think consider changing my diet.

You can take this kind of dream literally, as in, I need to make an eye appointment and it is on my mind; or symbolically, as in, I am having trouble seeing some things in my life clearly, or, regarding the part about not being as well as I thought, anxiety about the approaching anniversary of my fourth bone marrow transplant, or my re-birthday.

I haven't had checkup anxiety for a long time, but my next appointment is on my mind because I have to keep moving it. First it was because of bad weather and now it is because next Wednesday I'm scheduled to sub in the Valley Opportunity Council's adult education program, which I have done the past two days.

On to another topic, I have made a mistake about my birthday.

That is, my re-birthday, the anniversary of my fourth transplant.

I have been saying that it was Jan. 31, 2009.  But on some paperwork that just came, it says Jan. 30th!

A day does not a big difference make, but still, it's important to know.

A birthday can be a time to pause and reflect. A transplant birthday is loaded.

Although I think I'm doing pretty well, on some level I'm concerned that a doctor will examine me and find something. Beneath the surface lurks the fear that since the same truck hit me four times, it can hit me again. Hence the nightmare.

You never know what will happen. We learned in the news biz not to say, "Such and such will happen on such and such a date." When you got a press release exclaiming, "The fourth annual most wonderful event in the world is happening over the weekend," you rewrote that "the fourth annual such and such is PLANNED." (And removed the hyperbole.)

So I'm hesitant to say that in a week I will be nine years old. Rather, in week I expect to be nine years old.

Though past the magic five-year cure marker, it's probably safe to join members of the general public who say that they will be a certain age and not that they expect to be that age.

So here goes...drumroll...on Jan. 30, I will be nine years old.

Spits three times. 

Toi toi toi!

When a picture is worth a thousand words

                                       

Nell Catherine

                           
        I realized I'm the same age as the grandchild
        I thought I would never see!

                         

Ben,  Joe, and moi