Saturday, April 21, 2018

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.

Sunday, April 15, 2018

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.

Wednesday, April 11, 2018

On kids moving in and moving out

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.

Thursday, April 5, 2018

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.