AML Awareness Day: A lot to know

The Leukemia and Lymphoma Society (LLS) sent an email stating that today is AML Awareness Day. Who knew?

The letter states:

"Acute myeloid leukemia (AML) is a complex, rapidly progressing cancer that has seen few advances in treatment even as therapies for other blood cancers have taken remarkable leaps forward. Since the 1960s, five-year survival rates for many blood cancers have doubled, tripled and even quadrupled. Today, only one in four AML patients survives five years after diagnosis.

"AML is one of the deadliest blood cancers and the most commonly diagnosed form of leukemia in adults. It is extremely complicated to treat because it is not a single disease, but a group of more than 10 different major subtypes and other rare mutations. With advances in genomics, we can now identify and target specific types of AML. This precision medicine approach is the key to new therapies for patients."

It goes on to give details of its Beat AML Master Clinical Trial, which employs precision medicine to give the right therapy to each patient based on specific AML subtype. 

The website Know AML  states, "Know AML was initiated on the 2 December 2016 in San Diego, CA during the American Society of Hematology (ASH) 58th annual meeting.

"During ASH, a collective of AML patient leaders, professional representatives and industry supporters gathered to formalize how to mark AML World Awareness Day 2017. Their aim was to raise awareness and education in AML to Patients, Carers & Families, Healthcare Professionals and the General Public."

The website suggests different ways for people to help spread awareness of the treatment and support options available. They want you to wear red and black, and, "Everyone is encouraged to share their activities, so if you could film or photograph wearing red and black and then share it on social media using #KnowAML, you will appear on our activity wall.

Some points:

1: Carers is actually a word. I thought the word was caregivers but I looked it up and saw the shortened version.

2. Colors are silly. Not going to wear red and black. In any case all I can think of is Stendhal's"Le Rouge et Le Noir," which, like the author of this story, I read when I was about 17. 

3. Yesterday when I went to have my blood pressure checked, my internist said he didn't know anything about it. I'm all for AML awareness, but it's kind of grandiose to start something and call it World Awareness Day. (By the way it was down to 128/82. He said that was pretty good, not great. I was surprised because I thought it was good. They have changed the guidelines to make it even lower but he said it was good enough and he wasn't increasing my dose of blood pressure medication.)

4. This caught my eye from the LLS email: "Today, only one in four AML patients survives five years after diagnosis." Not that I need reminding, but it reminds me how lucky I am to be alive.

5. When a whole bunch of information comes at you, it's useful to look at where it's coming from.

The LLS trial has the backing of the FDA and is a led by blood cancer researchers from leading medical centers with input from drug companies. Know AML is chock full of studies by leading researchers, but the supporters are all drug companies. This made me leery about a potential bias towards certain treatments from which they would benefit.

For example, in this story about a 70-year-old with symptoms, he is quoted as saying, "My new oncologist recommended the same decades-old standard of care for AML, which is an aggressive chemotherapy regimen. I knew the treatment would have harsh side effects and would not cure my AML.”

First of all, nobody talks like that, a sign that somebody wrote it.

I wondered, how did he KNOW the traditional regimen wouldn't work, besides the concern over his age?

He went with a targeted therapy offered through a clinical trail, using a drug that would only go after the cancer cells instead of the kind of chemo that I had, which wreaked havoc in my system.

Great that they can have more alternatives now.

The story was generated by Celgene, a global pharmaceutical company, a sponsor of the Know AML venture along with three other pharmaceutical companies. 

The professional sponsors are European LeukemiaNet and Haematology Nurses and Healthcare Professionals Group , totally legit, but the major backing of "big pharma," could at least make you wonder.

6. If this is too much information for you, the reader, I apologize.

It was also probably too much for me. For example when I started reading about 10-year survival rates for patients with different mutations and with different kinds of treatments, I realized I was getting into territory that has always made me uncomfortable.

I never wanted to know all that stuff.

My late great friend Patricia did want to know, and we used to have lively discussions about how to decide what is too much information, or too little, or the right amount.

I'm sorry that she is not here to discuss this great big information dump. We probably would have laughed about it, thereby smoothing over our discomfort.

Good driver, great big geyser

I was a little worried about transportation to Dana-Farber on Wednesday because I had gotten used to my private driver (Katie).

When the driver called to confirm, his pleasant voice reassured me.

The ride was better than extracorporeal photopheresis, or ECP, the light therapy on my blood.

I had a bad feeling when the nurse at the Kraft Family Blood Donor Center put the needle into my left arm. It felt like it hit the wrong spot. I told her so but it looked OK so I can't fault her for continuing the process. I looked away and felt a patch of warmth spreading on my arm. When I turned back, I saw that it was blood oozing.

"Oh, shit," she said.

She called for help. A couple of other nurses came over with gauze. She put pressure on, and the gushing stopped. Mark, one of the more experienced nurses on the premises (the first one who got me to use two arms) came over and put something on to stop the bleeding. My nurse wanted to still use two arms. He said that because they put in heparin for a blood thinner, that wouldn't be a good idea. 

I usually take out my computer and watch something (last time it was a whole episode of The Crown), but I didn't have the energy. I browsed through the New Yorker I had brought. 

Near the end, she dabbed hydrogen peroxide on my shirt to try to get the blood off. Not all of it came off. Luckily it was an old shirt. 

"Sorry about the geyser," she said.

Instead of leaving at 6:30 p.m. as I had told the driver I had expected to do, it was closer to 7. Luckily since he was one of the good ones, he didn't complain.

I was pretty beat but stayed up to have something to eat.

The next day, I had tennis. It is a contract and you need to find a sub if you're not going to play. Since I wasn't sick, I figured I would go. It wasn't great, but it wasn't bad.

On Friday, I went for my session at Amherst Community Acupuncture. I originally went in search of treatment for my neuropathy. I still have those pins and needles in my feet, but I think it might be slightly improved. I have definitely felt some other benefits. For example, the chronic pain under my left shoulder blade has diminished so much that sometimes it doesn't hurt at all. After the episode with the geyser, it started to hurt again. But after treatment, once again the pain went away.

In any case, I always have a nice nap and leave feeling calm and relaxed.

On kids moving in and moving out

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Joe packing up in 2008 and, below,
 Katie's bags in 2018

The scene was the same: The living room as a staging area.

But the protagonists were different: Katie on Saturday getting her stuff ready for her move to New York.

Joe on Aug. 31, 2008, getting his things together for going back to college.

Katie had been in South Hadley between jobs for about two months. I'll leave the details to her, but I can say she wanted to live in New York, so she left Minnesota and came home to regroup.

She found a new job so quickly that it seemed like she had just unpacked when she started packing up again and then was leaving before I knew it. I expected her to be here longer, and although I of course wanted her to succeed in doing what she wanted to do, I was sorry to see her go. Well, she'll be closer than she was in Minneapolis, for sure.

We had a good little routine going, watching Friends and Parks and Rec and taking advantage of nearby fun places to go, such as The Bookmill on a rainy day well-suited to browsing and reading, and pancakes at Gould's Sugar House followed by a stroll around Shelburne Falls.

She wrote me a lovely note about our time together and got me the beautiful flowers in the photo. 

As for Joe, I came upon a post about one of his moving days when looking back at my blog upon its 10th birthday. I started it on April 1, 2008, so I could keep writing when unemployed and intermittently hospitalized. Then it just kept going. This one from Aug. 31, 2008, made me think about current events: kids moving out, moving in, and moving out again. I wrote:

"I woke up to the smell of late summer/early fall. It is hard to describe a smell. If this one had a color, it would be lemon yellow, not the brighter, crisper color and smell of real autumn. I am still close enough to my latest hospital stay that when I breathe in a sweet smell like this, I take a moment to be thankful that I’m out of lockup.

I also heard a strange sound. It was the sound of the washer and dryer running in tandem. All summer I had been after Joe to keep up with his wash. Now he was making up for lost time. He leaves for college tomorrow, and, true to his word, he was getting it done. It seemed like just yesterday that he had come home from Bates for the summer and the house was an obstacle course of laundry, suitcases, hockey stuff, books, sheets and towels, blankets, sleeping bag plus stuff he had accumulated during his first year away from home. It seems like he just finished putting it all away and now it is time to take it all back out. (And of course if I follow that thought all the way through, it seems like yesterday that I brought my premature second child home from the hospital.)

As I hovered, Joe had said, "You gotta do what you gotta do," 

Katie's move involved a team effort. Katie and I drove to Enfield, where Jim was waiting with a U Haul. He drove it to Norwalk to get Joe, who drove it into the city. Katie and I went in my Subaru, and, finding a parking spot right in front, thanked my father for the guidance.  

They arrived in the U Haul not long after. Jim and Joe did the heavy lifting. Katie did the medium lifting. It was four flights of stairs. I was almost relegated to door-holding for the whole time but protested. So I carried up some of the lighter things. The building was nice, but the stairs were uneven, and by the end of the day I was huffing and puffing. My phone said I had done 18 flights, but it felt like more than that.

It crossed my mind that at one point in the bad old days, Jim and I couldn't even stand near each other at the kids' games, and now we were working together, getting along fine.

We had lunch at a cozy neighborhood restaurant and then drove to Home Depot and back to the apartment, which she is sharing with two others. When Joe and I went out for coffee, I found a little plant for her bookshelf. The bed made and the curtains hung, the small room started to look like a new home for the baby of the family, the quiet one who has become the family adventurer.

When we said our good-byes, my eyes filled with tears. 

But now that she's closer we can see more plays...and I might even have a new place to stay.

In dermatology land, answers and loose ends

The same day that I wrote this post about my frustration in dermatology land, I got a call from a nurse who gave me the answers to one set of problems. I'm supposed to apply Efudex chemotherapy cream twice a day for two weeks to the spot on my cheek and twice a day for four weeks to my arms.

She said the divot in my thigh is more of a graft vs. host issue than a skin cancer issue. So now I will try to chase down my other doctor in the same practice, the one who gave me a cortisone shot last time and said to use Clobetasol (a strong corticosteroid) if the shot didn't work. When it turned out that insurance doesn't cover the expensive cream anymore, at first it seemed like the nurse was going to ask the doctor to look for an alternative. But when we last spoke she said that is more of a GVHD issue for my other doctor to address.

You might ask what's a little divot among the bubbles and ripples on my thighs? To me it's just one thing too many among the many other things that aren't supposed to be on my skin. And it's not that small. I said to someone, if you kept digging there you might get all the way to China.

Today or tomorrow I will get back on the phone and see if I can try to get in to see the other doctor, the one who specializes in subcutaneous dermatology. One doc for the top layer of my skin and another for the layers beneath it. Another trip to Boston, since, for insurance reasons, it's difficult to see them on the same day even though they're in the same office.

On the positive side, once I get past the frustration and get in to see them, they are very attentive and nice and I am confident they know what they're doing.

And since I have all these site-specific problems, I'm lucky to be at a world class medical center where there's a doctor who specializes in each one.

In a broader sense, think tongue, kidney, lung, feet (neuropathy) teeth, gut, eyes...OMG I am so far behind in following up with the last one but now I'm afraid that when I get there he'll ask where I have been. Still, must add to list.

Kafkaesque time in dermatology land

Several weeks ago, I emailed my dermatologist with some questions and concerns. If I catch her at the right time, she often responds quickly. But if I don't, my email can quickly drift down to the bottom. She told me that if I didn't hear back, I should call, so that is what I did about a week ago.

I spoke to a nurse who is new to the practice. I gave her my list. She said she would get it to the doctor.

When another week passed, I called again (yesterday) and spoke to someone at the desk. She said that the best way to get in touch with the doctor is to email her.

"No, and no, no, no!"

I used to say this to my kids when I wanted to make a point. Although I didn't say it to the person on the phone yesterday, I wanted to. Instead I explained that I had already emailed, and then spoken to someone, and neither had worked.

So she patched me through to the regular nurse. I told her I wanted to know which creams, lotions or potions I should put on different kinds of spots and also said that I wanted to change my appointment in May to a regular checkup instead of a repeat PDT, or photodynamic therapy, as my doctor had planned, a departure from previous years when she has only done the painful "face fry" once a year, in the fall, when I am not outside as much as I am in the spring. (It's bad to be in the sun after it.)

"You're not high maintenance, are you?" she asked.

She said it was a joke and I knew it was a joke.

My answer was part joke and part serious.

"This is what happens when you have four bone marrow transplants and I'm trying to be a freelance writer but I spend half of my time following up!"

The practice, Brigham Dermatology, used to have a wonderful care coordinator on whom I could count to get things straight. I miss her because not only was she efficient, we had also become friends. One time when she helped me out in a pinch when I was in Boston and needed a suspicious spot looked at, I had to hang around and wait a while. I didn't mind because I was glad that she had squeezed me in, and I used the time to get her a little something for her desk. It is frustrating to have things run so smoothly and then turn into a bit of a free-for-all with nurse #1 who I spoke to last week apparently never getting the message to the doctor and my having to call again and explain the whole situation to the people at the desk and to nurse #2.

One of my problem areas is a new divot on my right thigh. After my last appointment with my primary dermatologist, the dermatologist in charge of my GVHD of the skin saw me in the hallway and graciously, on her lunch hour, took me into a room to look at the indent. She injected several tiny shots of cortisone into it and said if that didn't work, to use a cream that I used before, Clobetasol. Turns out I didn't have any, so I told nurse #1 last week that I needed a refill. She asked if I wanted cream or ointment. I said cream, which I had before. When I talked to nurse #2 yesterday, she said, oh, it is very expensive and your insurance doesn't cover it any more. Will have to wait for an alternative.

On my left thigh I have a lipoma (biopsied and deemed not problematic). Maybe I could suggest taking it off and using it to plug the hold on my right thigh. Or not. But at least I would be more balanced.

I could use my dermatologist's home email. She gave it to me, but I hesitate to use it unless it's especially pressing, say, for example, waking up in the middle or the crack of dawn to send her a photo of a spot that is freaking me out because I'm sure it is a melanoma. She is always reassuring, pointing out that for some reason bone marrow transplant patients tend to get squamous cells. I have had one basal cell (in my ear) and more squamous cell skin cancers than I can count.

Meanwhile I need to get to the dentist because my "teeth" fell out...well, actually, it was the temporary that he put in last week in preparation for getting three crowns.

I had been very careful and was just eating something soft – a croissant – when I had that bad feeling of something odd floating around in my mouth. At least it was not the nail that a friend found in her food when eating in the restaurant across the street from The Republican.

You never know what can happen.

Needles: The bad and the good

Yesterday I got to double my pleasure by listening to the grating sound of Trump talking about signing the $1.3 trillion spending bill at the same time as my dentist was drilling three teeth to shave the tops off in preparation for three crowns.

Alas, I found out at a previous visit that I had worn down the outsides of the remaining teeth on my "good" side by favoring it.

Did I say that over the course of the nine years after my fourth bone marrow transplant, I have lost 12 teeth?

The good news is that my dentist is a mensch who gave me a nice discount and that,  just as importantly, he and his assistant gave a running critique of the orange man on TV and the Republicans supporting him.

When Trump said something along the lines of it being a very big bill that took a long time to read, Iris (his assistant) and I laughed so hard that a chunk of something or other popped out of my mouth. I couldn't say much but if I could, I would have agreed when my dentist said, "Republicans in Congress are all idiots."

I was whining a little when I first came in and sat down in the chair. My dentist reminded me that I have been through so much that a little shaving down of three teeth, plus the novocaine, is nothing. Perspective helps, but still, there is something about getting multiple novocaine sticks in your gum, and having three teeth ground down, that is nerve-wracking.

At least it was preceded and followed by some better things.

The Friday morning round robin in Enfield was great. I played well and had a good time, and remembered, as I sometimes do, that it was not always so. Such as in the bad old days when I had to run off the court and throw up, or when certain people complained about playing with me. More of the thing where perspective helps.

After the dentist I went to Amherst Community Acupuncture, where treatment is more affordable than private sessions. I originally started going because when I wrote about the pain of having and treating neuropathy, I interviewed a sufferer who said acupuncture helps. The jury is still out as far as the tingling in my feet is concerned – I think it might be taking the edge off – but I am certain it helps overall in generally settling my nervous system down.

And the setting is itself soothing. People sat around, not wanting to leave. As often happens in these parts, when the conversation turned to where you are from, two were from Manhattan (myself included) and one from Brooklyn.

It was a good ending to the busy day, but still, when I got home, my whole lower left gum was throbbing, and I had to take a little something for the pain.

Not running, but playing a role in road race

The crowd in downtown Holyoke waiting for the race to begin

I could probably have built off my reasonable showing at the Hot Chocolate Run to train for this weekend's Saint Patrick's Road Race, but after last year's dramatic finish (euphemism alert), I decided to give it a break.

Someone said maybe it's time to call it quits, but I don't necessarily think so.

In any case I enjoyed taking Ben and a friend to the race, cheering them on, and, after much searching in the crowd, finding Ben and giving him a lift to where a bunch of them were going for beers, finding a nearby coffee place, then going back to get him and bringing him home.

If I closed my eyes, I could have been in the way old days of driving him around when he was a kid.

Since it's the 15th anniversary of the day when my poor time in the same race led to my leukemia diagnosis, I wanted to be involved even if not running. Being the support staff brings its own type of reward. And as I wrote in my last post, Ben cheered me on when I ran, and it felt good to do it the other way around.

It was interesting, for a change, to see the runners from start to finish, even though it was cold and windy. I got a good look at each of the starting groups and then walked over to the finish line after the last runner took off. It didn't take long before the winner came through. Those top runners all had such beautiful strides. The colorful garb that had helped see me through when I was struggling was still in evidence, such as a girl dressed as a unicorn, complete with a horn, and green as far as the eye could see.

My plan was to run when I got back home, but all in all I had walked about three miles – in addition to jumping up and down to stay warm – and that was enough for the day.