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.

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?