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!

Of crashes in the snow and crashes of the vaccine website

 

This photo makes me look better than I actually looked in motion. I went twice and was thinking that I might try it again because the third time could be the charm.

I have gotten SO timid going down the tiniest little incline. We went to the golf course across the street. I used to go zooming down the hill and into the woods. (Ouch, when I wrote zoom it hurt me because I am so tired of it but also grateful for it, especially the Y yoga and exercise classes.) Now, to get to the flat part, when we went down on the other side with a slighter incline, I landed on my bum both times. Boyfriend had to take his skis off to lift me up. After yesterday's snow it is so pretty out that I told my friend I might want to do it one more time.

She asked why I would do that.

I said because I'm stubborn I guess. But then I thought better of it and realized I should stick with what's going well. That would be running, but I have to find the balance of doing enough so that it makes me feel good and doing so much that I hurt me knees.

I needed something after last Thursday's fight with the Massachusetts COVID vaccine site. What a mess. It crashed almost immediately when it opened up to about 1 million people at the same time. 

I was looking forward to getting it from Dana-Farber, But they took it away from the hospitals to focus on bigger centers. At one point, people like me were at the top of this phase. Then the state moved those with two or more co-morbidities down to be with all of those 65 or older. It is too confusing to even explain. That was the group to which it opened up Thursday. 

One person tweeted: "Using the Massachusetts vaccination website is like feverishly clicking on Ticketmaster with millions of other people, except instead of trying to see Beyoncé you're trying to keep parents alive in a pandemic."

The Washington Post had an interesting and troubling story about the problems that medically vulnerable people are having in getting the vaccine. 

But wait, I buried the lede...

Just as I was giving up hope, Katie, who had been working on the vaccine effort with me, texted that she found me an appointment! Actually, her boyfriend found it for me. It was at The Eastfield Mall on Monday. It was at first hard to believe. I think the moral is that you need a millennial. I've heard other stories like this. 

In any case, the night before, it was hard to sleep. I felt like I was going on a big trip the next day. Actually, going anywhere is a big trip. It wasn't very far, but it was a big step. 

The date, 2/22, was memorable in my family. As Joe texted: "I know we didn’t exactly nail down the timeline but can say that 2/22/09 was the night we won our hockey championship and then went to see you, and doctors said they didn’t think you’d make it through the night. Not only did you make it, but here you are 12 years later going to experience another medical miracle!"

I got the Pfizer and am scheduled to go back for the second dose on March 16th. 

It just so happens that if nothing else, the blog is a good memory jogger for me. I found this post, I'm still here, from March 11, 2009, in which I had typed up some of Diane's group emails. Diane did a great job! 

She wrote this on 2/23: 

The good news first: her white count is good and there are positive signs that the transplant part of what has happened has gone well.

On the other hand, she continues to have multiple complications – infections, fevers, problems with blood pressure, kidney failure, and GI bleeding… some of which is under control or being treated through dialysis or medications, and some that is being tested further.

We (Ben, Joe, Katie, Jim, and me) had a long meeting with the oncologist today. I wanted her children in particular to hear directly from the doctor what we are dealing with and what the treatment plans are. There are many elements that are being addressed individually and collectively. We are taking each day as it comes while being fully aware that things can turn for the worse at any moment. The kids will come back tomorrow for a visit as well.

I’ll leave you with this - I was there quite late last night after having been called back to the hospital by the oncologist. As I sat in the reclining chair next to her dozing off and half watching her sleep, I visualized us asleep in our beds at 1200 Fifth Ave… happier times and in its own odd way, a sense of peacefulness."

No matter how crazy things are now, I can say for sure that they are indeed happier times.

Oh, here's my attempt at an "I got vaccinated" selfie. 

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.

Ten years ago this month things were not so good

At bottom right, 11 years volunteering

I might have burned myself out with my last post – I haven't felt like blogging.

But I figure that although no news is often said to be good news, people might think something terrible happened – which they correctly thought when I disappeared for a while after relapsing (two times) – or they will think I have nothing left to say and will stop checking in.

So herewith a post.

Things have been pretty calm, which is news in itself. Our summer tennis league started, and I'm enjoying playing outside with my Paper Dolls teammates. We have an especially fun time when we play with our sister team, the Valley Dolls and go out afterwards to Pizza D'Action in Holyoke.

I'm supposed to stay out of the sun but can't do it totally because summer means outdoor tennis.

I put on a lot of sunscreen and wear a sun protection shirt and gloves. The shirt by Coolibar is supposed to be breathable, but it is not, so if anyone knows of a more breathable brand, please let me know. By the end of one of our clinics at the Canoe Club, I felt like stripping down to my sports bra.

Lucky for my skin but bad for tennis, those Paper Dolls matches were in such bad weather that we played in light rain in the last one, and in the first one, we fought the wind. My father always said don't complain, it's an outside game.

For sun protection, I also bought driving gloves. They go up to my elbow and make me feel elegant. Unbeknownst to me until recently, the sun can damage your skin through your windows and windshield, making your left side especially vulnerable.

On my most trip to Dana-Farber for a checkup with Dr. Alyea, we went back and forth over whether I should increase my ECP to every week (to hopefully reduce the rippling on my thighs and abdomen) or whether I should stay at every other week and hope for more slow improvement.

We ended up at the same place as in every other consultation I've had in the past six months or so.

It's a lifestyle matter and basically up to me if I want to spend a whole day every week getting my blood sunburned. At least for the summer I'm going to stick with every other week.

To me the ripples look oceanic, but they're probably not as bad as I think. And the main issue, my flexibility and my hardening abdomen, is definitely better. So as my mother used to say to me when I looked at my face so close in the mirror that I saw all my flaws, I have to say to myself, "Stop looking so closely then! "

I feel good and am moving well, so I should just sit (or move) with that.

While in Boston I also attended Dana-Farber's Volunteer Appreciation Dinner and enjoyed it very much. Free food and recognition, yay. My contribution is through the One-to-One program, where people like me who have been "there" provide support to those going through it. At the dinner, I sat next to a woman who was in a similar program for breast cancer survivors, only theirs is in person.

She said that after she recovered from treatment, she ran a triathlon. And then another. And a third.

I told her that I had planned on doing one back in 2007 when I relapsed, but now I don't think I have it in me.

I also told her that I recalled my first words when Dan (Dr. DeAngelo) told me I had relapsed.

"But I was going to do a triathlon!"

He said, "We'll get you back on your feet."

I said to myself, "I AM on my feet."

When I told him I felt fine, he said that if not treated with chemotherapy and another transplant, I wouldn't feel fine for long.

That relapse was in July 2007, so it was brewing 10 years ago this month.

The same life but another life.

Sometimes serene, sometimes not so much

Highlight of the week

The sound of a woman's voice with an accent I couldn't pinpoint was encouraging when I picked up the phone for last week's ride, as was the name of the company: Serene Transportation.

I wasn't disappointed. The driver was a lovely woman wearing a long flowing skirt. It turns out she was Nigerian. Usually I find out something about the driver but I drifted off because I was tired from almost three hours at our tennis clinic. It was not my usual destination, but rather a trip to Mass Eye and Ear on my week off from  ECP for a checkup on the status of my eyes, which are drier than the normal person's due to the transplant. Dr. Dana was pleased and said I should stay on the Restatis (the drops advertised by the woman with the bright blue eyes) and come back in a year.

I knew I would have to wait a long time based on what happened before, so I wasn't as annoyed because I wasn't surprised by the two-plus hour wait.

On the way back, I was happy that my driver was listening to All Things Considered on NPR — a first.

Tomorrow is my ECP day, followed Thursday by a visit with Melissa. I had to make a separate trip for Dr. Dana because he only sees patients on Wednesdays, which obviously means three weeks in a row for a total of four appointments.

Everything is fine, and some great things happened in the interim between last week's Boston visit and tomorrow's, but I have to admit that although I usually present as super cheerful, I sometimes get down because I don't get any distance. Almost eight years is in some ways a lot of distance, but it is undercut by being such a frequent flyer.

When talking to a friend about something that had upset me, I said I didn't feel right about complaining because all the people I knew who had the same illness had died. She said to the contrary, I have every right to get upset. So I had a little cry

I  didn't have much time to dwell on it because I was consumed by the Democratic Convention, staying up so late on Thursday that on Friday it took me most of the day to think of getting out of my pajamas and get out of the house.

Proud Grandmas

Saturday was Nell's first birthday party, a fun and memorable day, meaning so much on many levels, as I wrote in my blog post a year ago.

Sunday I went to Tanglewood with a group of Boston University alumni for lunch and an all Brahms program.  I used to go to Tanglewood a lot, always picnicking on the lawn, and only once sat in the shed. I loved sitting in the shed and although when you listen without seeing it you obviously know that real musicians are making the music, actually seeing them do it is quite another thing.

I wished they would do an encore, but watching the encore bows was a treat that you can't experience if you're not there.

Last night I played in a great tennis match with my summer team, the Paper Dolls, against our sister team, the Valley Dolls, followed by pizza. If I could play tennis all the time I would be happy. Even better, if I could take a portion of the Holyoke Canoe Club clay courts with a slice of the river view around with me I would be all set. I would have to add coffee and a few other things.

But tomorrow it is back to Boston. I'm going to drive myself and sleep over at Margaret's due to the appointment I have on Thursday. When I have back-to-back appointments I sometimes combine the long distance rides with the local service, The Ride, but at other times like this week I feel like I'd rather not deal with the extra moving parts.

Celebrating a fourth birthday

Dinner at the Frontera Grill in Chicopee

There was a time when I didn't think I'd live for four days, let alone four years, and when, during the first year after transplant, I was pleasantly surprised that a kidney specialist said he'd see me in three months, because that meant he thought I would live that long.

And here I was tonight, having a re-birthday dinner with Joe at a Mexican restaurant, enjoying good conversation and enchiladas, sangria and homemade guacamole, having put in a good day's work writing and looking forward to tennis tomorrow.

Although Dr. DeAngelo had said you could break out the Champagne at two years, I didn't want to tempt fate by acting overly confident, so I had coffee with friends instead.

I've watched the calendar as the four-year anniversary of my transplant approached, but again, superstition came close to keeping me from observing it. I was telling a friend that I wasn't sure what God would think, and she said this wise thing:

"God wants us to celebrate."

What a nice idea, I said, adding with a laugh, "I don't think God cares if I go out to dinner or not."

So off I went, giving thanks to my donor, Denise, on this day as on every day.

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.

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.

Life in the 'big house'

This is a nice hotel, which is a good thing because I’ve been here three weeks and may not go home until after my new transplant, which is now scheduled for Jan. 30.

I wake up at least twice a night drenched in sweat, and help is only a buzzer away. A PCA (personal care assistant) comes in with a new hospital gown, and I sit in a chair while she changes the sheets. It’s just sweat, but I told her the other night, “I feel like a little kid.” When she is three-quarters done making the bed, I climb back in and she puts a clean sheet and new blanket on me and tucks me in.

Bright and early, a nurse comes in with my pills.
“Your pills, madam.”
Well, more like, “Good morning, I have your morning pills, how was your night?"

The list:
Labetalol (for my blood pressure, which rose when I came into the hospital), Prilosec (antacid), Levofloxacin (antibiotic), Tricor (for high cholesterol, also new for me), Valcyte (anti-viral to treat and prevent CMV), Voriconozole (anti fungal for the pneumonia), Lexapro (anti-depressant), folic acid, multivitamin and sometimes magnesium.

Then a nurse or the unit coordinator brings me coffee, mustachioed Steve drops off the New York Times, and I lounge half the morning and then go do my 20 laps.

I get platelets or blood every few days or so, and, as needed Ativan or cough syrup with codeine. Sometimes I feel like I’m being held together with tape. On some days I thought I would write but I could barely find the keys, and my hands shook. I get Benadryl with every transfusion, and I’ve also had some Demerol when a fever was coming and I had the shakes. But my fevers have decreased, and they discontinued the Demerol in favor of warm blankets, which are really comforting.

The other night there were workmen in my bathroom after midnight doing battle with a leaky faucet. I said I didn’t mind the drip that much, and suggested they return the next day. They kept at it for a while and then did come back the next day, I think around 8 a.m. A woman came in to do another EKG, and I said, “There are men in my bathroom.”

She eyed me as though she thought I was delirious, but as if to humor me, she went over and knocked on the bathroom door. Sure enough, two workmen were squeezed in there. She told them not to come out until she finished the EKG.

The pneunomia is continuing to clear up. I can take a full breath without coughing, and the oxygen saturation that they check with my vital signs is nearing normal again. A week ago I couldn’t get past about 85 percent, and I went on oxygen for a little while one night. Now I’m back up around 98 percent.

A hairdresser from the Friends Boutique at Dana-Farber is coming to give me a haircut this afternoon. I hope that’s as exciting as the day gets.