A little bit of PTSD can go a long way

Illustration from Skincancer.net

I'm trying not to duplicate what I write in the blog and what I write for the skin cancer and blood cancer platforms of Health Union. So, I probably didn't share on the blog how I had cryosurgery that made me cry.  If you go to the link you can read all about it. Or not.

I got the biggest blisters on my hands and on the top of my nose. Good thing it wasn't date night. I knew I shouldn't have done it but I popped a few of them. They were ballooning and just asking for it. I left one alone. Guess what? The one that I left alone healed faster. I also wrote one about the problem of skin picking.

The other night I had a nightmare that conjoined some of my trauma and anxiety. Also I realized that something from the news had seeped in.

I dreamt that I was in a bed in a hospital room where relatives were sitting. My doctor said he was going to stick a needle in me and do a major procedure. I would go under. If I came out on the other side, I would be healed. But I might not make it through the night. He said someone should stay with me all night. But then my bed was in the hall and I didn't know where people would sit. Analysis: Stem cell transplant, coma, touch-and-go night when they really weren't sure I would make it. And the thing about the bed in the hall: those melodramatic ads against Question 1, the nurse-patient limits, which featured patients perishing in the hall because nurses had been pulled off to meet requirements in other places. (It failed.)

In another part of the night, I dreamt I forgot my tennis racquet and had to play with something that had a little handle and a brush at the end. I tried to do it but then realized I couldn't possibly hold onto it. The scene cut to a match. My opponent was bouncing around. She looked pretty good. I said I realized I couldn't play with the racquet. Then I realized mine was in the car. She said to go ahead and get it. I said but then I would be late to the match and she said it was OK, we could start and one-all, and she wasn't good for more than one set anyway.

I ran out to get my racquet but then realized my keys were locked in a room. Then I couldn't remember exactly where the room was. Oy.

I was still in transit when I woke up. I guess the good news was that my opponent was being nice about it.

I also wrote a piece about PTSD but it hasn't been published yet. When I did a little research, I found a story that stated many cancer survivors suffer from PTSD.

The National Cancer Institute calls it Post Traumatic Stress, or PTS. Apparently it is not as severe but it can rear its head at any time. Such as in nightmares that go back to the time of crisis.

After that nightmare I woke up feeling blue. I don't know why the saying is "feeling blue." Blue is one of my favorite colors. It should be "feeling gray."

In any case there was nothing much to do about it except to go on with my day.

All of this really happened

When talking to Dana-Farber's assistant VP for Gift Planning Alice Zaff at the recent Chefs for Jimmy, I told her I would send her the link to what Dr. Alyea and Melissa wrote about me in the fall 2014 e-newsletter, Advances in Hematologic Malignancies.

I directed her to the second link down, Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML).

There, she would see my story, starting with my diagnosis in 2003 at age 48 after unusual fatigue during the Saint Patrick's Road Race.

I won't repeat the whole megillah; you can read it if you want by clicking on the second link. When I reread it, certain things jump out at me: the nearly four years in remission after my first transplant; the relapse in 2007 (not included in their telling was the fact that Korby and I had just won at the Districts); transplant #2 with an unrelated donor (allogenic transplant) ; and six months later, pancytopenia (empty bone marrow), followed by transplant #3.

Picking up from there, they wrote: "Six months after her second allogeneic transplant, the patient's peripheral blood counts again declined. A repeat bone marrow biopsy demonstrated second relapse of AML. She was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, and did not re-emerge for four months. She underwent another induction chemotherapy with a high-dose cytarabine-based regimen and had multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed. Other complications included delirium and severe edema."

They didn't even get around to talking about the kidney failure and the coma.

It was during that stay that I received my fourth transplant, on Jan. 31, 2009, with a different unrelated donor (Denise).

Today when I looked at a bottle containing 300 vitamins at Costco, I said to my friend, "I don't know if I'll live that long."  That kind of "joke" still comes out of me reflexively. After I hit the five-year mark, I was no more likely to die of leukemia than anyone in the general population, but once you are afraid for your life in the way that I was, it doesn't totally leave you.

God willing and the creeks don't rise, tomorrow I will go to Fairfield to celebrate my seventh birthday, or re-birthday, thanks to Denise and Dana-Farber.

'Coma Day,' revisited

While many people observed Valentine's Day yesterday with hearts and flowers, I kept thinking of it as "Coma Day."

Two years ago Feb. 14, I slipped into a coma while hospitalized at Brigham and Women's Hospital in Boston. It was two weeks after my bone marrow transplant, and while in the days right after the transplant I seemed to be doing well, things quickly took a turn for the worse.

Diane said I began having trouble holding onto things, dropping a milkshake I was trying to drink. I started acting less aware. She told one doctor she thought I might be having a stroke. Then I began to lose consciousness.

Naturally, I can't recreate it or imagine it. Here's what Diane wrote in a group e-mail dated Feb. 15, 2009:

"Many of you have called or sent messages for information about Ronni so I am sending this as an update.

As I said before, she has had many complications, the most pressing of which is kidney failure that has led to a number of other problems including fluid build up in her lungs and as well, she is now in a form of a coma. Last night they moved her to the ICU where she is being closely monitored, awaiting a special bag of platelets (which were supposed to arrive yesterday at 4:30 but are being held up at the Red Cross and won’t get there until 4pm today.) At that time, they will begin dialysis with the hope that it will take off sufficient fluid to help regain consciousness.

On the positive note, her white count doubled since yesterday, which shows some signs of hope that the transplant is proceeding well. Her vital signs are stable. She is a real fighter. Her children saw her on Friday when she still had some level of consciousness, and she knew they were there for which I am very grateful."

A week later I had woken up, but I continued to have problems with fever, GI bleeding, blood pressure, kidney failure and infections. At a family meeting Feb. 22, Dr. Alyea outlined the situation, saying that although I could recover, I had many serious problems. It seemed I might not make it through the night.

Well, here I am. I don't like reliving it, but it is hard to avoid. Hopefully as time passes I will feel less compelled to delve back in.

I observed the day by spending 45 minutes on hold while trying to resolve an insurance question, walking Maddie with my friend Ellen and then going to the Y, where I ran a little more than two miles on the dreadmill and then water jogged. I haven't done that in a while. It was pretty tiring, but I felt good when I was done. And my knees and feet felt OK. It was a good way to keep my mind off "coma day."

"You couldn't be in a further place from that now," Margaret said when I talked to her last night on the phone, a little weirded out from reliving it. "Just keep thinking about how utterly different things are now."

As my father would have said, "Good clear thinking."