Still chuggin' along

Not much news since the last post. Nina is nearing the neutropenic stage of this round of chemo. That is low white blood cell counts, extreme fatigue, risk of infection (no flowers or unpeeled fruit allowed). All normal and expected. It's not a real good time for visiting but we'll leave it up to Nina, so you can call her if you'd like to stop by.

She did have some new side effects from this chemo round that caused her eyes to get blurry and itchy. She was pretty miserable a couple of days ago, and could not read or watch TV. But that has started to clear up with some eye medication the doc prescribed.

Not a real clear time on when she'll be released. She has to climb out of this chemo and then go through the 2nd one already planned out. The doc said she could do the 2nd one at her office, but this doctor is so highly protective of Nina (a good thing) that I wouldn't bet on that. Maybe she'll give her a brief weekend at home after this one ends. We'll see. I would guess we're looking at about a week to recover from this one.

I stayed overnight a few days ago, and it was not terrible (although the cot they set up for me was!). Normally they come in to check vitals in the middle of the night. Then they wake you up at 5am to get vitals and you have to be weighed which means you have to get up and stand on a scale. They do it the same time every day. But not the night I was there. Nina thinks they delayed it because I was in the room. Like I said, a hospital is the worst place to rest! But I took a sleeping pill, and managed to sleep fairly well through the night. Around 6am the weighing came and then more nurses hanging IV fluids and then breakfast, and that was it. Sleep time was over.

Some people are asking how I am doing and that's such a difficult thing to answer. I have been going to two groups. One is a caregivers support group, and the other is a men's caregiver group here in Berkeley. Only one of two in the entire country (supposedly). They have both helped me see how others are dealing with their situations, and they're giving me ideas about how to get through this trial I am going through as a caregiver. Basically when Nina is feeling good, I feel good. When she's not, I'm miserable. I have gotten through it by working on the house and getting my mind off of things. Since Nina has been diagnosed in October, I've painted the bedroom, put new flooring in the kitchen, three new windows on the house, and rearranged my office. It takes my mind off of this lousy mess.

Incidentally, if anyone is manually checking on this blog and not using the automatic e-mail notification thing, you can also get here by going to ninadeckert.com. You don't have to remember ninawd.blogspot.com.

Back at it

Update 2-1-12 8PM: Another bit of good news. The doc said Nina's LDH levels were greatly elevated this morning. She said that can mean that tumor tissue is breaking down. Nina asked her what her thoughts were, and the doc said she was "very optimistic". So I don't whether that was  just to put her at ease, but we'll take any words of encouragement we can get!

Update 1-31-12 10PM: We got some good news today when Dr Reier visited. A relatively new drug (FDA approved August 2011) called Brentuximab apparently has a very good track record at stomping out a specific marker (CD30) that is present in Nina's tumor. So the plan is to continue the current chemo ARA-C (1st round today, then 2nd on Thurs and 3rd on Saturday) and then start on the Brentuximab when she recovers from the current chemo.

Nina happy to be in her own bed even if just for the weekend.

Unfortunately things didn't go as planned last week. Nina DID get to go home on Thursday, but she is back at Alta Bates today (Monday). The PET scan she had just before she left last week showed that the tumor was only marginally reduced by the last chemo round. So Dr Kaplan (UCSF) has suggested yet another type of chemo called R-ICE. I'm pretty sure that's what it is. Nina texted me this info and she thought it was Arisee, but I couldn't find anything close to that. Will confirm tomorrow. (Edit: 1-31-12 Not R-ICE. It's ARA-C). Although Dr Kaplan is clearly involved, I think he doesn't see the need to go to SF when all this can be done here closer to home. Although I was on the fence about all this, I now think she is better off here with Dr Reier. She is extremely patient, warm and most importantly watching over Nina like a hawk. If anything is not taken care of, she gets a nurse to deal with it right away. She checks in with Nina sometimes twice a day and is never rushed.

This round will be for 3 days with a day in between each dose, so about a week of chemo, and my guess is 5-7 days after that to keep an eye on her. She is getting very tired of hospital life. I sometimes smuggle in treats and more palatable food and I think that helps. I asked to have a cot put in the room, and I'm going to spend every 2-3 days with her to help give her some sense of normalcy.

I would recommend that if you have the time sometime this week, go ahead and visit her. Of course, you should call her first (if you need her #, call me at 510-407-4442) and if you do go, keep the visit short. She gets tired very easily and she's just too polite to tell anyone.

Moving Forward

Nina is still in the hospital, and was given 3 consecutive daily rounds of chemo last week. These were billed as "heavy duty" rounds of chemo. She had a few low days afterwards (expected) with one particularly bad day of nausea (expected), but she is now over the hump and just like her normal self. No nausea and her appetite is improving.

I had a nice visit with her today (Sunday) at the hospital. I brought the newspaper, some apple juice, crackers, peanut butter & jelly and yogurt. She ate all of it and we sat and read the paper together. Almost felt like a normal Sunday except we were in a hospital.

The official plan as of today is that on Wednesday she will have a bone marrow biopsy, and then soon after that a PET scan. She is scheduled to be discharged on Thursday with a visit to UCSF Oncology the following day (Friday). I have no idea what is scheduled on Friday. I think it will just be an appointment (outpatient) and not being admitted just yet. But not sure about that. It does seem clear that things are finally moving forward towards getting Nina processed into the stem cell transplant program as soon as possible. There may be another round of chemo done at UCSF before the stem cell harvesting. I just don't know the details yet.

It's encouraging that things are moving forward. The last 3 months have been like a roller coaster with all kinds of little side things slowing down the progress. Now it looks like Nina is jumping through every hoop they give her and ready for the next.

Back in the Saddle Again

Nina was having a good time at home. Eating whatever she wanted, sleeping through the night, and watching trashy daytime TV. She is now back at Alta Bates Summit for another round of chemo. This one is to be a heavy-duty, three in a row dose, and she is just finishing the 3rd tonight.

The plan is to be there about 10 more days while she is monitored, and some tests are performed. Then she is back home for a day or two and then on to UCSF for possibly one more chemo round and then stem cell harvesting. That's the basic plan. Things change, but currently everything is going very well.

Nina is very excited that things are moving forward. She is also feeling pretty good right now. No nausea at all. She also told me she is feeling the love and good vibes from everyone and it has really helped her to stay positive.

One of my favorite pictures. This is from Bald Head Island, NC about 7 years ago.

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Home again!

It's so good to be back home! I'm looking forward to eating some better food. My sister Margaret picked me up today (thank you Margaret). Everything's better at home. I miss seeing all of you and hope to be out and about soon.

I have to go back to the hospital on Friday for a brief infusion. Then I need to go back in on Tuesday for more chemo that will probably involve a little longer stay than the one I just had. Hopefully after that I should be ready for the stem cell transplant at UCSF.

By the way, that Takatsubo heart episode is now history. I had an echocardiogram on Tuesday and my doctor was very thrilled with the results!

NEXT STEPS

    I am Nina's twin sister and with the holiday break I have some days I can spend with her. Sam invited me to be a guest author today to catch up on where Nina is (at home!!!), how she is doing (really pretty well all things considered) and what's coming next. I am grateful to all her local friends for all the day to day support they give to Nina and Sam; I have already enjoyed the delicious food. Small amounts of different flavors seems to be what Nina enjoys a lot at this time. We're going to make another round of orange ice similar to what our sisters Susan and Margaret made at Thanksgiving that Nina found so toothsome.
     While Nina clearly doesn't have the energy and stamina that are her norm, she is regaining some strength at home. On our walk yesterday it was late enough and cold enough that we turned back to the house after a block and a half but in the sun and warmth she's going for several blocks.
     Tomorrow she will return to Alta Bates Summit for what is being advertised as a 48 hour admission to get methotrexate followed by leucovorin all accompanied with lots of intravenous fluids. The "lots of intravenous fluids" is the main reason to do this in the hospital rather than as an outpatient. Judging by increasing strength and stamina the Takotsubo cardiomyopathy that helped make her last admission a roller coaster ride has surely improved but throwing a lot of fluids into her will be a test of the progress of that resolution.
     So again, I am immensely grateful for the love, support, prayers and goodwishes of Nina and Sam's many friends. Anything that helps them and puts a smile on their faces becomes a velvet tsunami of warmth and happiness for me. Thank you for all you do.
Ann Walker

Happy to be home!

I'm very happy to be home, wearing my own clothes, sleeping in my own bed and catching up on my reading. My appetite has been getting better and I haven't been nauseous so far.

So we visited UCSF yesterday and met with Dr Kaplan and his assistant Mr Leahy. They are going to review my case with a panel if 12 people next week and hopefully consider me for the stem cell program. If all things are good, the earliest the process would start would be late January.  It will require 4-6 weeks in the hospital plus some outpatient work. I'm ready to fight and looking forward to getting well. Thank you all for your good vibes, prayers and good wishes.

Here's a short video Sam took this morning.



Untitled from Sam Lewis on Vimeo.