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.

Under the weather and grateful for good nurses

Day +3
As expected, I felt a little under the weather yesterday and about the same today. It’s not so bad that I want to curl up in bed, so I’m still walking around. Yesterday I had a headache, nausea and pain from the mouth sores, and Mel gave me the perfect cocktail: Tylenol, Ativan and Oxycodone. Today I will get platelets and blood and some lasix for my puffy eyes and general overall water retention putting me about a dozen pounds over my normal weight.

I don’t like to take too much Oxycodone, because it can make me a little loopy, but I agree with the nurses who think at this point that it’s a good idea, because it’s important to eat and drink but difficult to do so if your throat and mouth are killing you.

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I’ve been thinking about the two nurses I’ve had during this stay whom I first met six years ago during my first round of treatment. As every patient knows, nurses are on the front lines of care, and they are so important to how you feel emotionally and physically. Some take care of you physically but don't have the time or the inclination to talk. These two take the time to find out how you are.

I was one of Vytas’ first transplant patients. We kept in touch on and off, and he’s been my nurse at some point during each hospital stay. He knows me very well, having at one point nicknamed me Nervous Nelle. He can calm me down pretty quickly when I come up with some catastrophic scenario. It’s good to know someone with whom you can share scary thoughts, because once the thoughts hit the light of day, you can often see them for what they are, and some of the power goes out of them. Thoughts such as, “Do you think I’m going to die tonight of (fill in the blank)?”

Vytas knows when to bring me back to reality with a medical explanation and when to make a face or crack a joke. He's generally fun and comforting to be around.

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I met Mel during that same first hospital stay, and I remember that her quirky, dry sense of humor really cracked my mother up. The other day I was pretty down, and she gave me a good pep talk. It didn't sound canned; it sounded like she really meant what she said about second chances and staying positive because there's every reason to be. And she’s caught on pretty quickly to the way my mind works.

She was in the room two days ago when the team came in to discuss one of their ongoing concerns, the fungal, or aspergillus, infection that caused my pneumonia. Although it has improved, they are monitoring the markers carefully and juggling medication to keep it from getting out of control and to hopefully get rid of it.

I said to the doctor who heads the team, “I read that aspergillus can get out of control and kill an immune-suppressed person like me, but that won’t happen because you’re keeping one step ahead of it, right?”

This is not his exact quote, because I wasn’t taking notes: “Theoretically, you could have a problem anywhere the blood flows, so it could spread anywhere, like to the brain. But that’s why we’re watching it so carefully.”

I shot a panicked look at Mel.

“Let it go,” she mouthed.

And after the team left, she said it out loud, firmly. “Let it go.” She knew it was something I might latch on to for hours and hours.

I pointed out that maybe he didn’t need to tell me all of that. “As a writer, I might say to someone that they have too many commas getting them into trouble, but that’s not going to have a big emotional affect on them,” I said. “It’s not the same as the doctor telling you more than you need to know and giving you ideas about bad things that might happen in your brain."

Mel reiterated: Let it go. So I did.

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My friend Katryn, who lives in Portland, came to visit later that day. We’ve known each other since college, and we've done a good job keeping in touch. I saw her last when we met at Plum Island and walked on the beach on a beautiful fall day this past September. I pointed out that I was glad she had come to the hospital but that I would rather be meeting on the beach again, and she said, "Next time." It helps me to think of all the next times.

Katryn had an interesting comment:

“I’m sure you’ll be fine,” she said, “but you’re taking the long way around.”

Which got me humming the Dixie Chicks and talking of other things.

Is that a banana under your Cheerios?

I buried the banana in the Cheerios and put the peel in the trash instead of leaving it on the breakfast tray. It made me wonder if my brain is OK after all.

Explanation: I know that since I am now on the restricted transplant diet, I can't eat any fruit other than that with thick skin. Having gotten conflicting answers about whether I can eat even oranges and bananas at this early point, I took matters into my own hands and felt a little like I was hiding contraband as I did it.

The doctor said I could have bananas and oranges, but they are not on my official BMT menu. Diane brought me a few oranges and bananas, but one nurse said to wait until I get home to eat them and another echoed her. Of course it doesn't really matter if I have the fruit, but maybe wanting it is a way of trying to hold on to part of my old routine. So…I figured a little banana wouldn’t hurt me. When I cut it up, it reminded me of being home, when the dog comes running as I peel the banana and I share it with her. I miss the dog. Too bad she can’t visit.

I am getting a ton of IV fluids with the chemo. This morning when I woke up and looked in the mirror, I noticed that my upper lip had puffed up, Renee Zellweger-style. I know that for some odd reason women pay for collagen injections to achieve this look, but I found it disconcerting, since it isn’t me. A nurse confirmed that it’s from the fluids, and everything will go back to normal when the fluids stop.

My night nurse is often Sergie, a model-beautiful woman from Haiti. I asked her if she had considered modeling; she seemed flattered and said no, she hadn’t. When my teeth started chattering as my fever rose the other night, she got me Tylenol and warm blankets. She covered me with the blankets and tucked my quilt in over them. We chatted for a few minutes and the shaking subsided. She’s the opposite of the rude MRI techs from the other night. Amazing how far a little kindness goes.

Yesterday, though, I had a problem with an inexperienced nurse. A preceptor accompanied this trainee most of the day. When it was time to hang my chemo, both came in, and the teacher led the way. So far, so good.

The IV nurse had to remove one of my IVs and start another, because they’re good for only four days. (I am still waiting to get another PICC line, which should happen today.) After she removed the old IV, blood seeped through the dressing. She applied more gauze, and it seeped through that too. So even though they weren’t planning on it, they ordered platelets.

The bleeding had stopped by the time the platelets came, but I was still anxious to get them in. The trainee came in by herself with the platelets and some other medication, opened the IV pump, and then dashed out of the room saying she had to check on something. It took a while for her to come back, and she succeeded in hanging the platelets. She watched to see that they were running but never came back to double-check.

Meanwhile Nurse Ronni noticed that nothing was dripping into the tube where I thought the platelets should be entering. I have a lot of bags up there – six right now and about the same number yesterday afternoon – and I traced the platelet bag and discovered that sure enough, it wasn’t dripping.

So I put on my mask and gloves and went looking for her preceptor. Sure enough, the IV through which the platelets were supposed to drip had clogged up and gone bad. She and the trainee then came into the room, where the experienced nurse changed IVs and the platelets began to drip. The trainee said, “Thank you for telling us, that was helpful.” (How about, "Sorry about that"?)

I didn’t have anything against her, and she was pleasant and well-meaning, but I think it was too much for me to have had to monitor this. Plus what if I had fallen asleep and I really needed the platelets to stop the bleeding and she hadn’t double-checked?

Later I asked the preceptor to please accompany her trainee when they are hanging something, because “she doesn’t seem to have the confidence and knowledge.”

The preceptor agreed and said she would have been in there, but she had had an unusual situation. One of her patients had bolted out of the pod into the hall and was heading for the elevator, and she had to go retrieve him. Okaaaaay.

Today I have an experienced nurse, so I feel I can concentrate on other things without having to “supervise.”

It’s D-2, the last day of fludarabine. Tomorrow I get the double dose of melphalan. As I said before, my mind drifts into worry-land with the question, “What if the melphalan doesn’t wipe out the leukemia?” (The fludarabine is lower intensity and is intended more to lower my immunities to accept the donor cells, while the melphalan is more intense and has the job of going after the leukemia.)

I must constantly bring my mind back, without getting down on myself for worrying. I need to remember the title of the subtitle of blog: Fighting Cancer One Step at a Time.

Holding pattern is over

I got my first dose of fludarabine, the pre-transplant chemotherapy, on Saturday. I’ll continue getting it once a day until Thursday, when I’ll get a double dose of melphalan, a chemotherapy agent aimed at mopping up what I like to keep reminding myself is a small amount of leukemia. I get my new cells on Friday. Thank you donor, wherever you are.

Dr. Alyea said to expect mouth sores a few days after the melphalan and also a possible thinning of my hair. I still have some fevers (and accompanying shakes) but mostly I feel OK.

It was strange to make the transition from holding pattern to actually taking action. I’ve been here so long (since Dec. 21) that towards the end of the hanging out phase that ended Saturday, I could sometimes distance myself from why I am really here. Once the chemo started, I came face to face again with the worry over whether it will work. The flip side, of course, is thinking that the start of chemo brings me closer to the day when I get the new cells and get better. I’m working on it.

There is no more Zen in my walks. Starting Saturday, I officially became a BMT (bone marrow transplant), with all the restrictions that entails. No more going out the double doors to rapidly walk 30 laps (a mile and a half) around the sixth floor. Whether counting the laps or trying to get in touch with healing energy (sorry if that sounds too new-agey) or just quieting my mind through breathing, I felt that the walks calmed me down. I know, I’m breathing all the time (thankfully) and can still connect with my breath, but it helps to keep moving.

Now (still wearing gloves and a heavy mask), I walk up and down the pod. I couldn’t even begin to count laps per mile, because it’s the shortest pod I’ve been on. Also it’s an obstacle course, with chairs, equipment, janitors’ carts and other hazards making it hard to find a clear path. It always seems to be busy out there, with doctors, nurses and aides going in and out of rooms or congregating to discuss a patient. Still I managed to walk twice today for about 25 minutes each time and even managed to find an area of about six steps to get a little speed up. And it’s all about getting around the obstacles, isn’t it.

Knowing that the dietary restrictions would set in again soon, I had so many big salads last week that a nurse asked me if that was all I ate.

I had company all weekend, which was great. I felt bad when I nodded off during conversation after they came all this way, but I'm sure they understood. Nancy drove from Syracuse; Emily flew from Pittsburgh, and Serena took the train from New York. (Pause here to get stuck twice for blood cultures. Ouch. Poor arms.) Diane also popped in, and Jim brought Katie today after school. Correction: Katie drove Jim. Yikes.

Last night I had an interesting dream. I was in a house where a big bear was rummaging around inside. I tried to run outside but I wasn’t fast enough, because the bear was drawing near. So I plastered myself against a wall and stayed very still. Next thing I knew, the bear had left the house and I was safe.

Oh by the way, for anyone following the MRI story, I got the results back and my brain seems to be OK!