The occupational therapist cometh

Today I received a visit from a pleasant occupational therapist.

She asked if I knew the date and time. Seeing as how the calendar and clock are on the wall in front of me, I peeked. Easy peasy.

Then she told me three words she would ask later to test my short-term memory: Pink, cadillac, truth.

Then count backward from 100 subtracting seven each time. No fair. Then do the months backwards, skipping every other one. Tricky. Then she got a pair of hospital pants and asked me to show her if I could put them on by myself. Hurray! Success.

Now the three words again. Somewhere in my mind is an image of Mary Kay of cosmetics fame and a pink cadillac. Ain't it the truth. Pink, cadillac, truth. Correct me if it's another cosmetics magnate. In any case it helped me remember the words. My brain works.

Next came the physical therapist who retested my strength and took me for a walk without the walker, just me holding her hand. I can do this with Diane too. It makes me nervous because I'm wobbly but they say I'm ready to be more independent. Also I can move around my room with my walker instead of calling every time I need something. Picture a deer in the headlights. That's me when I got this info. More independence will be great but I'm so used to being taken care of that it's scary too. Baby steps.

Hurray for beautiful kidneys

Today the friendly kidney doctor with the bow tie informed me that my kidneys are beautiful. Hurray! I never gave any thought to my kidneys. Who knew?

My body is still having trouble recalibrating from what it's been through, especially the loss of a large amount of fluid in a short amount of time. I think I lost about 40 pounds in a little more than a week. It's good to have ankles and knees instead of tree stumps which I could barely move. My problem now is that when I take a walk with my walker, my standing blood pressure drops way down and I feel like I might faint. They said to just take shorter walks and be patient because it will level out soon. 

Also I still need platelet and blood transfusions; they said not to worry about that either because my marrow needs to wake up more, and they are confident it will.

Watched two Seinfelds and four Friends the other night, a record for me. I think I'm getting my focus back a little because I was able to read a whole story in The New Yorker about Rahm Emanuel, and I've been able to read a little in a book, "Unaccustomed Earth" by Jhumpa Lahiri.

Still don't know when I'll get to rehab. I've now "celebrated" the first day of winter and the first day of spring in the hospital.

I haven't looked at myself in the mirror and finally took a peek with my cell phone camera. I was dismayed to see that I had tufts of hair and bald spots making me look a little like Linus. Donna, one of the personal care assistants, buzzed it all off for me a can start from scratch, so to speak.

Thanks for your messages. It's great to get them.

Getting Stronger One Day at a Time

I'm sitting in my chair feeling much better although also strangely drained. Diane pointed out that I've been in the hospital nearly 3 months and who wouldn't be drained.  I came in on the first day of winter and now it's almost the first day of spring. 

My white count is great at around 6 or 7, but I keep needing transfusions of platelets and red blood. I just learned today that I am definitely done with dialysis and the kidney guy congratulated me and signed off by saying, "Keep peeing!"  I can make it up and down the hallway with a walker and that is getting easier as I am losing more water weight, but I still I look longingly out my door at the people who are just walking without giving it a thought. It is interesting what we take for granted.  I am due to go to rehab after I leave here so I assume that walking will be second nature in the near future.

Also I need to force myself to eat which is a chore since I haven't eaten in such a long time, but I am working on it.

I can't concentrate on much -- watching a lot of MSNBC. I am sure I will end up knowing all there is to know about bonus-gate at AIG. 

Thank you all for your prayers and good wishes. Keep the good vibes coming.

Raspberry sherbet

This is PJ here, guest blogging for Ronni, aka Wonder Woman.

When I walked into Ronni's room yesterday, she was sitting in a chair by the window, the remains of lunch on the tray in front of her. Ronni's been through the wringer, but she's back.

Normally we'd spend some time on techno-transplant talk--blood counts. chimerism, viral loads, neutropenia--but we spoke instead about our kids, her donor (who'd sent a beautiful handmade necklace), the next steps on the road to recovery. I spied a tiny wind-up horse on her bedside table and asked what that was about. A friend sent it to me, she said. Go ahead, wind it up. While the horse skittered around the table, Ronni asked me if I knew of the Seinfeld episode in which ponies are discussed. "I had a pony!" I blurted out. There we were, two New Yorkers laughing about Seinfeld and the famous Pony Remark.

This brings me to the raspberry sherbet incident. A dietician walked into the room carrying a small tray stacked with six containers of raspberry sherbet. Hospital life is full of absurdities, and this was one of them. What was Ronni supposed to do with six rapidly melting sherbets? Stash them in the mini-fridge? (She doesn't have one). Throw a party? Ronni did the sensible thing, of course, and rang for a nurse, who came and removed five of the containers. It was a Seinfeldian moment.

As Ronni enjoyed her single serving of sherbet, we talked a little about next steps. The steps will be small, but Ronni is determined to make them.

I left the room, buoyed by Ronni's attitude, and certain that whatever is thrown in her path, she will kick it to the curb and move on.

I'm still here

This is the first time I've been able to look at my computer for a month. Sorry I kind of disappeared; I was pretty much out of it although I'm starting to come back. I'm going to let Diane do the talking. She fished around and found some e-mail addresses where she sent updates. Again sorry that some people were not included. I appreciate all of your love and support and prayers and will try to not disappear again!
Ronni

2/13/09

Thank you for your calls to Ronni’s room and cell phone, and for the many emails you have sent to her recently. I have retrieved some of the messages and I wanted to send this message to let you know her status. At the moment, she is not answering either her cell phone or room phone, and is not able to check emails. She has suffered some complications due to various factors and is not alert to talk. However, since yesterday, there are some signs of improvement. The doctor told me this morning that ‘we are not out of the woods’ but there are some encouraging signs – better blood counts, stable heart rate and blood pressure, and some indications of better kidney functioning. The 3 kids and Jim were there today even though I know she didn’t want them to see her as she looks right now, but I felt it was important, as did they, for them to come and it was a worthwhile visit.
I know you all love my sister and are concerned about not being able to connect with her. I am hopeful she will pull out of this, and then she’ll be back on line, but it will likely be a slow process.

2/15/09
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.

I will be closely monitoring the situation and will let you know how things go. Unfortunately, in the meantime, my mother-in-law Joan Koven died yesterday at the age of 81 after a long illness. She was a wonderful woman, elegant in every way, and always treated me as one of her own. It is the last of our four parents to pass, so it is a difficult journey for my family. Assuming Ronni is stable, I will be going to NYC tomorrow afternoon for the funeral, returning Tuesday night.

Thank you for your support and I’ll be in touch in a couple of days.

Diane

2/18/09
Ronni was moved yesterday from the ICU back to the 6th floor – pod 6A and is in better condition. Her vital signs are stable, her white count and platelets are up, and the doctors are pleased with her progress overall. She has now had 2 rounds of dialysis and they see some improvement from this process, particularly in the fact that she is more alert. She opens her eyes occasionally and can follow some commands, but is still not talking and not fully conscious, yet it is progress. I believe that some folks have tried to call the ICU to get an update on her condition, but unfortunately they will not release any information to anyone other than me, so for now, I will send updates every couple of days to keep you informed. I know she has many friends and relatives who love her and we appreciate the support.

Diane

2/23/09
Thank you for your calls and emails and prayers and soup and brisket and cookies and other signs of support and love to us and to Ronni. We very much appreciate it.

It has been a difficult few days and we aren’t out of the woods yet.

The good news first: her white count is good and there are positive signs that the transplant part of what has happened has gone well.

On the other hand, she continues to have multiple complications – infections, fevers, problems with blood pressure, kidney failure, and GI bleeding… some of which is under control or being treated through dialysis or medications, and some that is being tested further.

The team of doctors are superb as are the nurses on her floor which are close to being in an ICU type setting. She does have periods of being alert and wants her phone, books, and computer back – all of which is a good sign but I’m sorry to say she is a long way from being able to access them. I don’t think she is in any pain, but is very weak and asleep most of the time.

We (Ben, Joe, Katie, Jim, and me) had a long meeting with the oncologist today. I wanted her children in particular to hear directly from the doctor what we are dealing with and what the treatment plans are. There are many elements that are being addressed individually and collectively. We are taking each day as it comes while being fully aware that things can turn for the worse at any moment. The kids will come back tomorrow for a visit as well.


I’ll leave you with this - I was there quite late last night after having been called back to the hospital by the oncologist. As I sat in the reclining chair next to her dozing off and half watching her sleep, I visualized us asleep in our beds at 1200 Fifth Ave… happier times and in its own odd way, a sense of peacefulness.

I’ll be in touch and thanks again for your love,

Diane

3/2/09
Hi All,

After 3 very difficult weeks, Ronni is finally showing some signs of recovery. I don’t want to get too far ahead of myself here, but there are several good things, and yet of course a few challenging ones as well.

On the positive side, her white count has been stable and normal for a few days. She is engrafted, which means the transplant part of this ordeal has worked, for now. They have an interesting method of figuring out how much of her cells are from the donor and how much are her original ones – called a chimerism study (sp?). She is now 100% donor which is fabulous. I don’t think she ever got to 100% in the prior transplants. Other good news – after multiple studies of her gut and liver and other things, they have not found any new signs of problems.

There are some issues they are still following and treating, namely her kidneys are still not working. She continues to have dialysis every other day and that is definitely helping, but they are hoping after another 2-3 weeks, they will see signs of kidney recovery. Her heart rate has fluctuated as well, but it is being treated. And the damn CMV (a virus she has battled off and on for a while even before this transplant) is back, but also being treated.

All together though, she is making progress. Tonight for the first time in about 3 weeks she had something to eat – pureed fruit and yogurt – and not much of it, but nevertheless, it was food.

There was one very good sign of the old Ronni this week that had nothing to do with numbers or levels or medicine for that matter. One of the Physician Assistants who has been around for a few years and has known Ronni for quite some time was in the room the other day. When she walked in, instead of asking her about counts, etc., Ronni inquired about whether Nancy was doing another Ironman race. Apparently they had talked at length at one point about the swimming portion of the Ironman (you have to be careful not to get run over by other swimmers I gather) and Ronni wanted to know if Nancy was in training again for this or for the mini Ironman. Both Nancy and I were thrilled.

Ronni here: That's it for now. Will try to do an update in the next few days. Biggest update so far: I have gotten off dialysis, I hope for good, because my kidneys seem to be waking up . Doing some physical therapy and taking little walks with the walker. It's amazing how fast you can get deconditioned. Baby steps and patience, right?

Post from the hospital long-delayed

Sorry I haven’t posted more. When I try to find the keys, either my hands are shaking, my vision and mind are blurry, someone walks in or calls or I make so many typos I quite (there’s one right there: I meant quit) in exasperation. In other words, it’s hard to concentrate. I’m sure anyone who’s been in the hospital can understand. It probably took me more than half an hour to write this paragraph.

So here goes:

Day +5
“You look great. You’re right where you should be!”
These words from Dr. Alyea
put me in a good mood, not necessarily the looking good part, although that helps, but rather the right where you should be part.

It is the opposite of “we don’t know what is happening with you,” a viewpoint I have heard all too often. Unfortunately, part of being where I’m supposed to be is the increase not only in mouth sores but also now soreness down my throat and esophagus. They increased my dose of Oxycodone from 5 to to 10 mg., and the higher dose does seem to keep the pain in check.

I told Dr. Alyea that I didn’t like taking too much pain medication, and he said there is no such thing as too much. “They don’t give you a discount or a credit at the gift shop for taking less,” he said. The important thing, he stressed, is to keep pain minimal. The benefits are wide-ranging and mostly obvious, and I know that it’s especially important to keep drinking and eating. During my first round in 2003, I ended up on IV nutrition for more than a week, and I really hope not to go there again. Of course I might end up on a pain pump and possibly IV and I need to remember that it’s temporary and not a result of my failing to try hard enough.

PJ, a kindred spirit I met through the blogosphere, stopped by after her check-up at Dana-Farber. She looks terrific, and it’s been nice getting to know her through her blog, then phone calls and now in-person.

Ben had a few days off and came to visit that night. As usual, it was great too see him. He stayed at friend’s that night and popped in to say hi Friday morning. He did all the driving, and I got the bonus point.


Day +6
I moved to Room 57. I should say “we,” because Diane did most of the work. The room is a tiny bit bigger, and much brighter. In my old room I got only 25 minutes of sun on a good day. This room is bright most of the day, and I think it’s good for my spirit.

The big news Thursday is that I only had one platelet. This is an abbreviation for 1,000; normal platelet range is 150,000-350,000. Estimates of the normal range slightly. The sound of saying a person has just “one” platelet,” however, is an attention-grabber that leads to fear of bruises and bleeding to death. I was told to take a break from my walks on the pod and to be very careful about bumping into things. I did go out once or twice to get a cup of ice, and the nurses who saw me looked like they thought I was taking my life in my hands.

Day +7
Much of the day consisted of waiting for platelets, which finally arrived at 4 a.m., having been ordered by 9 a.m.. I also needed two units of blood, which I got at around 7 p.m. and 11 p.m. I jotted down a lot of impressions duing the long evening, but couldn't understand them in the day.

Day+8
Dan DeAngelo, my original dotcor, dropped in this morning. I had switched to a transplant docotor (Alyea) when I went the route of the allogenic transplant after the allogenoic, but he is still involved in my care. We talked about my health and his kids and then, of course, his view of how I look.

"You're looking pretty good eight days out!" he said.

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.

********************************

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.

**********************

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.

*****************************

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.