'Visiting' parents' bedroom, chewing over dietary recommendations

I dreamt I was in my parents' bedroom at 1200 Fifth Ave.

My father's bed was made, but you could see he hadn't slept in it. I looked over at his nightstand  and saw the framed black and white photo of his parents. I knew he was gone.

But my mother's bed looked recently occupied. The pale blue coverlet was on top. She hadn't covered it with her bedspread. So I knew she was around. But where? I couldn't find her.

It was part distressing, part comforting, kind of dissonant.

The day before I had replied to a leukemia patient wanting to know what a stem cell transplant was like. I said the infusion of donor cells itself was no big deal. It was just like getting blood and platelets. I didn't get into how sick you get during chemotherapy, but my dream picked it up.

That night I dreamt I didn't feel well. Someone came in and took my temperature. It was 105. Just like it really was on the night that my mother called every hour or so and the nurse assured her that she had wrapped me in cold sheets and I would be fine.

I also dreamt I had such a bad toothache that I needed to find an emergency dentist working in a hospital, but I had no idea how to find that person.

Today I go to the dentist to find out his plan for the chipped tooth.

On Sunday I went to see a nutritionist (yes, she works on Sunday.)

She said I should cut out sugar and dairy and that despite all the good stuff I put into it, I put in so much crap that it depletes my body of the good nutrients.

She said that the inflammation that I have from my graft vs. host disease of the skin would calm down if I cut out the sugar. She is a fan of maple syrup, though.

She said that most likely, sugar gave me cancer.

If you look that up, every other post says yes it does, no it doesn't.

I think my mistake was in telling her that after tennis, I go to Breezy Acres and get coffee cake.

She said I eat too much fruit and not enough vegetables.

I remember going through something like this a long time ago, before cancer, and telling my mother I was going to cut the sugar. She said please don't cut out the fruit, it has so many good things in it.

At Atlantic Beach, we loaded up with fruit from the fruit truck. It's part of my culture.

The nutritionist probably has a point about the coffee cake. I went one whole day without it, and I survived.

But seriously, it is summer and I'm going to keep eating local fruit. I will make an effort to cut back on it though, and when I go to get tomatoes or corn maybe I'll have to go to Dave's, or if I go to Evelyn's, avert my eyes from the coffee cake, but that might not work because the smell there is so wonderful.

Or maybe I'll cut back and get one sliver to have with my afternoon coffee, which I am supposed to cut out but that is not going to happen because then I won't be able to write.

I think she meant to cut it ALL out.

She is not a fan of the yogurt I have been eating in large quantities. I thought I was doing something good. It's very confusing.

I got some almond "milk," which might not be called milk for too long.

I guess I can try for a few weeks to adhere to it as much as possible, but in the back of my head, I hear my father saying, "Everything in moderation." He isn't saying, "Cut out all the fun stuff."

Also, I'm going to Wisconsin and I need to eat cheese.

It's summer, so what about ice cream? Maybe one scoop instead of two?

It can get old to call everything a First World Problem but when I get in a bad mood about this I do have to remind myself that it is a luxury to have this problem.

Thin skinned

The prednisone has thinned my skin, causing dark reddish blotches to appear on the lower end of my arms. As soon as one fades, another comes. I try my best to apply sunscreen, and, if it is not too hot, to wear a lightweight long-sleeved shirt.

I googled it and discovered that these spots are a common side effect of long-term prednisone use, also afflicting older people as their skin thins with age.

Melissa and a dermatologist I saw said they would go away when I am off the prednisone.

I realized the spots are not bruises but rather blood pooled under the skin. One spot on the underside of my right arm grew darker and kind of scary looking. The other night I noticed that it had popped like a blister, revealing blood underneath. Katie bandaged it for me.

I know these spots are to be expected, but still, when a group vanishes only to be replaced by more, I feel somewhat like Sisyphus trying to roll that boulder uphill. I know it's beyond my control, but still, it's part of a desire to look and be normal again.

I remembered that my father developed these spots at the end of his life. My mother gently bandaged them when they bled. Several years after his death, and shortly before hers, the same thing happened to her. Until she needed caregivers, she bandaged them herself.

"I remember not too long ago doing the same thing for him," she said sadly.

And now my daughter is doing it for me.

..........................................................................................................................................................................

Adding to the unsightly mess on my right arm is a bruise and horizontal cut close to my wrist. I got it the other day while walking around the lake with two friends and their dog, Cassie. I had Maddie with me. A jogger approached from behind with his dog on a retractable leash. The dog wanted to stop; the jogger didn't. The leash got wrapped around my wrist, digging into my skin. The jogger untangled it on the run, shouted "sorry" and kept going.

This was not the biggest accident that ever happened. But even on the Tours de France, they are expected to stop. I was angry. I'm sure I would have stopped and asked if the person was OK. If he had circled around again, I might have said something. But I didn't see him again. Made me wonder what happened to joggers' etiquette.

Shot time

Earlier this week I got my vaccinations. You do this one year post-transplant. I did it after my first transplant in 2003, and this is the first time since then that I've made it to a year.

So hurray for vaccines, two in each arm! It didn't really hurt, but the two in my left arm went into the muscle, so it hurt more and was sore for a few days. It felt kind of upside-down; it seems like only yesterday that I took my babies to be vaccinated. The hand-outs I got this week were the same as they give at the pediatrician, explaining "what you need to know" about the shots.

I got the shots for:

– Haemophilus B, or Hib vaccine, to prevent Hib, a serious disease caused by bacteria and possibly leading to pneumonia, swelling of the throat, infections of the blood, joints, bones, covering of the heart and also even death;

– Diptheria, tetanus and pertussis (whopping cough);

– Pneumococcal disease, a bacterial infection that can cause blood infections, pneumonia, and bacterial meningitis, an infection of the covering of the brain; and

– Meningococcal disease, another bacterial illness that can cause bacterial meningitis and blood infections.

As for the rest of the visit, my counts were a little lower but OK for me. I got an appointment for two weeks, then headed back out into the world, a brave baby who had not shed a tear through all the shots and blood tests.

It's a little stretch to compare the shots to some other things, but it feels like there is a connection.

In jogging, I have to go back to "beginner's mind" (kind of like baby mind) to make progress. This means starting with run/walks, instead of struggling to reach advanced goals.

In yoga, I had to back up a little to see a way towards progress, sort of like going back to childhood to get my shots. The week before, yoga was terrible. It was too hard, and I fought it all the way. First of all, I looked at people doing what I could do effortlessly before my last hospitalization, and it made me angry. I kept toppling over, and Erin brought me a chair to lean on. That made it so much easier, because I didn't have to worry about falling.

This week I pulled the chair over and had it ready to use before that difficult balancing part came. So I didn't have to deal with anxiety. I did better the whole class and especially the part where I used the chair.

Erin came over after and said I did well. "See, you need to accept help," she said.

If I need to be more childlike, or, rather, feel more childlike to get the necessary help, whether it's shots or yoga or running or tennis, then I need to stop struggling and just do it.

'This will only hurt a little bit'

Tami, one of my high school friends, was in the area today, and she spent part of the day with me. She came with me when I got my lung biopsy, and kept me supplied with tissues while I coughed up blood for about an hour afterwards.

This was a biopsy guided by CAT-Scan. The handsome doctor, who looked not much older than 20 (why do they keep getting younger?) said it would not hurt. Ha. It was like a bone marrow biopsy only not at the base of your spine but in your chest.

He also said I would need to return for an x-ray in about two hours, because he might poke some holes that were a little too big, leading to a collapsed lung. “Maybe you could try not to do that,” I said. He assured me that he would do his best and said that if the lung did collapse, they would put in a chest tube. Okkkkaaaaay.

He numbed several areas of skin on my chest and then went in to get samples of what appears to be a pretty large mass on my right lung. I didn’t look at everything he was using, but I saw him use a needle for an aspirate. He stuck some other probes in and wiggled them while I lay in the machine, apparently so he could get the exact spot. I couldn’t even do relaxing breathing, because he had warned me that at any time he might need to say, “hold your breath.” If I was at a nice cleansing outbreath, there wasn’t much left to hold.

In any case, I survived, though the next hour was difficult with the coughing up of blood. The blood finally stopped, but hours later I am still having trouble breathing. It’s nothing terrible, and it is worse when I’m on the phone, so I tried stay off the phone tonight.

The biopsy is supposed to show exactly what is causing the pneumonia. Hopefully something will grow in a few days so they can target it with the right antibiotic or antifungal.

Tami (known as Tamar to her friends from adulthood) had breezed in this morning with a smile, only to be met by Ms. Doom and Gloom. I muttered about death, finding that actually saying some of my thoughts out loud took some of the power away from them.

Tami then used her no-nonsense, I-mean-business Tami voice.

“I’m sick and tired of the D-word,” she said. “I don’t want to hear it anymore!”

OK, OK, OK!

It was great spending the day with her. I think she may have given me a jump-start.

A week in the hospital

I started the blog to tell some stories, reach out to others and hopefully entertain while providing some useful information on healing and coping. I went into the hospital shortly after, and I dropped the blog. I didn’t feel like writing it. And I figured the only people reading it were the ones I had corralled. Then I came home and found out that PJ, in many ways my doppleganger, had been reading it. I found out that there were others, too.

So now I can’t drop it. I don’t want to write a succession of posts reading, this thing happened, that thing happened, WTF, why is any of this happening. The idea is to send out good, not bad energy. Well my last post didn’t send out good energy, but it brought a lot of good energy in. (Thanks, everyone, it really helps.) I guess I’ll just keep telling it like it is, and tell you I’m trying to get back in touch with all the things that helped me cope up to here. I think I’ll start by remembering to breathe.

The days have blurred together, but here are a few things that have been happening. It took a few days and a parade of doctors to figure out what to do about the pneunemonia. It’s probably fungal, because the past few times I’ve come in here, I get the fungal ball on my lung. The pulmonary people came in, listened to my chest and suggested a bronchioscopy, which involves putting a tube down your throat. They also said a Video Assisted Thoracic Surgery, or VATs, would provide the information on whether this is fungal or bacterial. I had already had a VATS years ago, and it involves a long, painful recovery, so I nixed that option. The bronchioscopy went away by itself.

Next the ID (infectious disease) people weighed in. I wanted to talk to Dr. Marty, my favorite ID doctor, who’s followed me from the beginning and who makes me laugh. I found out he was away until tomorrow (as are many of the doctors, like usual around major holidays). They said he’s not on service, but he knows of my situation and will stop by.

They should really find a better way than having a parade of doctors poke and probe and float their theories on the patient. I love having all this knowledge on my side, but I want them to share their ideas with my doctor, who will present me with a plan. My “visitors” wore me down. It was irrational to cry over Dr. Marty’s absence, but it was the last straw. I burst into tears, feeling like a little kid.

I had a trainee nurse that day who did everything by the book. I asked her for an Ativan. “Are you just generally anxious or is it something specific?” she asked sweetly. Homicidal rage time. DON’T MAKE ME EXPLAIN! I thought. NOBODY HERE MAKES PATIENTS EXPLAIN WHY THEY WANT AN ATIVAN! In reality, I told her it was generalized anxiety, and I got the Ativan.

Anyway, there is a plan. In the morning I'll get platelets, followed by a CT-scan biopsy to get a sample of the matter on my lung.

In the meantime, I got a PICC line inserted in my left arm and went down to have it x-rayed to see if it was in the right place. It needed to be tugged down a few more inches, and when the nurse did it, I saw that there was a cut on my arm where some of the tubing enters. I told her I had low platelets but she said she didn't need to apply extra pressure. When I returned to x-ray, my sweatshirt and shirt were soaked with blood. I was pushed quickly back upstairs in my wheelchair, and the bleeding stopped after the nurse applied pressure.

Then I almost killed my MacBook. I had left it on top of the mini fridge, only to discover that (duh) it’s not a good place for a computer, due to condensation. When I picked it up, the bottom was wet, and it wouldn’t start.

I’m not an electronics enthusiast. My view ranges from necessity that I must put up with, to downright maddening piece of junk that will only cause me trouble. But I love this little Mac. (No, they didn’t pay me to write this.) I fell in love with its sleek simple design and the light touch of the keyboard. I rescued mine by wiping it with a white towel and re-charging it. Suddenly it came to life! The Mac was saved! So I guess there was something good to report after all. See, I'm trying to be more positive. I'll work on it some more tomorrow.