The waiting game

Yesterday I spent nine hours in the clinic; I think that might be a personal record. I got there at 11 a.m. for bloodwork and didn't leave until 8 p.m., due to time spent waiting for a chair in the infusion room and then more time waiting for preparation of my two bags of blood and delivery of my two bags of platelets.

I bring a lot of things to read, but I also spend a lot of time spacing out and picking up bits and pieces of peoples' stories shared in the crowded waiting room. Yesterday I sat next to a cheerful middle-aged woman with braided blond hair who was telling the people next to her that she was just meeting with her doctor instead of starting chemo, which she had put off by a day because she was so scared. Later I sat in the infusion room next to a man who had a reaction while getting chemo. The nurse had to stop the chemo for a while, and he kept asking when they were going to start it again while his wife and daughter tried to calm him down with Swedish fish.

Finally his rash cleared up and they started the chemo again. "Is it almost done? How much more time do you think? I'm going to call the nurse," he said repeatedly and loudly. His wife hissed at him. "Don't call the nurse. She'll know when to come." The nurse did indeed come, and he was actually done before I was. Somehow I managed to fall asleep during all of this.

On a positive note, Dr. Alyea was pleased that I held on to 12 platelets again and said that we'll see how I do this week and then maybe I can go to twice a week instead of three times. I haven't needed blood as frequently as platelets, although I knew I needed it yesterday because I was light-headed and weak. (My hematocrit was 25...not terrible, but low enough to feel it.) After a day like that, I usually am pretty beat the next day; today I slept late and then fell asleep for a couple of hours on the couch after forcing down some cereal.

I hope that cutting my visits by one day will help me start getting a little more distance. As it is now, I have to deal with "check-up anxiety" every other night. But I know that time is the only thing that will give me real distance.

Friday update

I waited three hours for my platelets today. My pre-transfusion count was actually a little better, meaning I might be holding on to them better or maybe making some of my own. On Monday I was as low as 2, (thousand), Wednesday I was 6 and today I was 12. Woo hoo! Obviously far from normal, but up is good.

While I waited in the clinic for my platelets to show up, Diane was among the good samaritans over at the Kraft Family Blood Donor Center donating platelets. Not all the platelet donors are giving directly to someone as Diane is to me. One woman was celebrating her 100th donation and was presented with a cake, which the others shared. Diane said it was a little tricky to eat, because the arm that is attached to the machine is immovable.

Diane got a travel mug today marking her 10th donation (she's been going every week). For her fifth donation she had received a pack of cards.

She says she can see why people become committed to donating. There's a sense of comaraderie, a satisfaction in doing something that really helps other people. Sometimes when the regular infusion room is full, I get my transfusion in the Kraft Center. The donors sit on one side of the room, the "receivers" on the other. They always seem to be having such a good time on the other side, laughing and chatting with the nurses. Of course the nurses laugh and chat with the patients too, but it's a different feeling.

An elderly relative wondered if when Diane donates, the two of us lie on a bed together and the platelets pass by tubing from her to me. It felt like an odd question, but on second thought, why expect anyone to know the process?

There is one needle in the donor to which three tubes are attached. One takes the blood out and a machine extracts the platelets from it. The other is giving the blood back. The other contains an anticoagulant. The platelets are bagged and held for about three days while they are checked for impurities. Then the recipient receives them though an IV drip.

The platelets build back quickly, so it doesn't harm the donor at all.

Today I wished we could just be connected by that magical tube. Finally, though, my platelets did appear. They pre-medicate me with Benadryl to keep me from breaking out in hives, which has happened many times. When I got back to Diane's, I konked out.

Follow-up to white blood count obsession mentioned in previous post: I got a shot of Neupogen Monday, pushing my WBC to 8 (high normal) on Wednesday. I loved looking at that number. Today it was back down to 3.5, which is OK too. Also I got my last chimerism results. I'm 100 percent donor!

Someone asked this question in the comments, so I'm adding the answer here. To find a place to donate platelets, contact the Red Cross or your local hospital.

Transfusions at the clinic; shopping on the web

Went to the clinic today shouldering some anxiety about what my counts would be. I knew I'd probably need blood and platelets, but it was the white count I was starting to obsess about. What if it had plunged, signaling something bad? With help from Diane, I reasoned through this. I got my blood checked every day in the hospital and I didn't obsess (well, not too much, anyway) about my counts. Just because I was going into a different setting, doesn't mean my results should be bad. Breathe in, breathe out. Think of something else. I did those things and also tried Wendy's suggestion; Every time you have a "bad" thought, soothe yourself by substituting a good one.

I didn't feel well this morning. I was weak and dizzy. My blood pressure turned out to be very low, and when I saw Melissa she said I needed blood and was probably dehydrated. My hematocrit was 22, and my platelets were 2!!!! I got transfused and although I still feel shaky, I think I'm feeling a little better. My white count actually was down a little, to 2.9, but Melissa didn't seem concerned and ordered a shot of Neupogen.

I have been on an internet-buying binge. I don't usually like to order from catalogues or the internet, because I end up sending most of it back. The packages arrive daily, and David announces, "Package for Miss Gordon!" Much of it is piling up in the corner to be returned, but I have kept a few things. I'm not done yet. My cousin Jeanne visited yesterday looking great in a striped T-shirt; she sent me the link and I'm going to order it.

It's a way of showing that I'm alive and that I plan to continue living so I can wear alll this stuff.

Transitions, transitions

I am safely ensconced at Diane's, my patient belonging bags piled in a corner in my niece Lily's room, where I am sleeping, a paper bag filled with prescriptions tucked in the corner of the kitchen, my loaded pillbox on the counter.

I'm trying not to spread all over the place, but that seems to be what's happening. Diane and David have been great, taking care of me and making sure to get me things so I only have to climb the stairs once a day.

It is, of course, great to be out of the hospital, and I don't want to complain, but...

I've had this feeling every other time I've left the hospital: a feeling of withdrawal, a sense of loss. Where did all the nurses go? I've read about the "post-partum" depression that often accompanies discharge, so I know that it's normal and that it will pass. The rainy, damp weather isn't helping, either. Part of it is that when you're in the hospital actively fighting, that takes all of your focus. Now that I'm entering into a new phase, which of course involves a different kind of fighting, all that I went through is beginning to hit me more.

It takes extra energy to be in a house, going up the stairs, sitting at the table for dinner. So I am kind of drained and droopy. Today I made my first clinic visit for platelets. Diane came too and wheeled me around. I had my cane but I couldn't have done all that walking.

Also of course I totally appreciate being here, because it's only 30 minutes from the clinic and they're making me feel at home, but it's not my home, with my dog pestering me and my daughter singing in the next room, playing the piano, having tea with me in the kitchen or reading or watching TV together in the den. Also, soon, Joe will come home from college and make the house even more lively, and as summer approaches, Ben will be around more. I'm not really sure when I'll get home...it depends on when I start making platelets.

I picked up a copy of President Barack Obama's "Dreams from my Father," and it has really captured my attention. It is helping me focus on other things.

On the road, toting toys

The day before yesterday my doctor said they were going to give me a shot of Neupogen to boost my white count because it had fallen a little, from the 4's into the high 3's. He said it was due to medication and not to worry, but just to make sure everything was fine, they were doing a repeat chimerism to confirm the percentage of donor to me. I haven't heard the results yet.

Quick flash of PTSD. What if something's wrong? Low white count has signaled trouble in the past. But this is now. I know the drill: Recognize the fear and let it go. The thought leaves a cloud, but a cloud won't kill you. My white count went back up the next day.

I have several new toys to get stronger and make life easier. Yesterday physical therapy brought a cane. Who knew I'd be happy to get a cane? It makes me steadier when I walk and especially when I do the stairs. The occupational therapist, whom I welcomed after she stopped quizzing me, brought me hand-strengtheners: a squeezing thingie that looks like a cheese grater, and a tub of green "thera-putty" to mush around in various exercises. Makes me think of the old days when we copied cartoons with silly putty. She also pointed out that my walking would improve if I stretched more (I'm very stiff), so I've been doing runner's stretches, leg extensions in the bed and making attempts to touch my toes. We also talked about yoga breathing, which is always helpful.

Two of my nurses from 6A, Myra and Pam, just came down to wish me well. Myra, giver-of-pep talks, gave me one again, joined by Pam: Don't dwell on the dark days, enjoy the present, don't waste time worrying, think of good things ahead. I mentioned that I was concerned that my platelets were taking so long, and Myra said she's had patients get platelet transfusions for a year. They both gave me hugs, said they missed me and asked me to keep in touch. I thanked them for saving my life and for generally taking such good care of me, emotionally and physically.

Buried lead: Tomorrow I get discharged. I'm going to stay at Diane's in nearby Newton for a while because I will need to come to the clinic every other day to have my tank filled. A physical therapist, home health aide and visiting nurse will come to the house.

Upstairs downstairs

The other day they moved me from the sixth floor (6A) back down to the fourth (4C). I kind of went kicking and screaming (well, not exactly, but I whined a lot). That had been my home for months and it was hard to leave.

I loved the nurses and the extra care on 6A. It's the pod where the sickest people are, and I needed to be there for a long time. Then they needed my bed for someone who was really sick. I am walking by myself now, although I'm still very shaky. And my nurse pointed out that she noticed I put on earrings, a sure sign of improving mental health. Still, I was attached to my little home away from home. Everyone pointed out that it was a good move; I didn't need that level of care anymore.

I came down to 4C two nights ago, kind of sulky. But I quickly realized the nurses down here are just as nice, plus the rooms are newer and very pleasant. I had already been on 4C during an earlier hospital stay, and found it a good omen that our apartment in New York was 4C also. Now I'm settling in here!

Today we meet about my discharge plans. I might actually leave tomorrow.

Transitions are hard...especially this one, since I've been here three months. But as Wendy said in an earlier comment, it's natural for transitions to be trying, but important to remember that they're taking me to a better place.

Platelet pandemoniom

Yesterday I had a new nurse from the float pool who shook me awake at 8 a.m. and said "Your platelets are here!" As I've said, I'm doing a little better holding on to platelets, but I still need transfusions about every other day.

I've had so many transfusions that my system has developed a resistance to most platelets, and I only get a "bump" from certain donors. We found out that Diane is one of them, and she's been giving a bag every week. I told her to take a little break because I don't want her to get exhausted, but good sister that she is, she's been donating every week anyway. She was scheduled to donate today.

Yesterday it turns out that I had dropped to 4 platelets, as in 4,000, and the PA seemed to be kind of worked up about it. She said to be really careful and take it easy, i.e. don't fall. In the meantime she went to call the Red Cross for the platelets, which were nowhere to be found. They started a special search for me and I waited. The nurse had been wrong about platelets being available. I took a walk but basically held my breath all day, except for throwing up my whole lunch onto my tray (sorry...gross, I know). I don't think she was very happy with me. Shortly after that the nurse went home. I got one of the regular staff nurses and was happy about that.

Meanwhile the PA called Diane, who was working in Worcester, and asked her if she could come back and donate that same day. Of course, she did. In the meantime, another bag from a different donor showed up, and I got hooked up around 9 p.m. Usually it takes between 30 to 45 minutes, but my IV was finnicky, sometimes painful and sometimes not dripping at all. I kept having to wave my hand around and change positions to make it work. They finally all got in around 11 p.m. 

Today I got a new IV. My platelets were 15, not great but high enough to skip a day of transfusions and fear of bleeding. Tomorrow I will probably get Diane's platelets.