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.

Dec 15th - Coming Home!

The discharge paperwork is being worked on at this moment. I am to go down there at 2pm to pick up prescriptions to have filled, and then go back around 6pm to bring Nina home. She is SO excited at the prospect of sleeping in her own bed without nurses poking and prodding her all day and night, without a mattress with a plastic liner under it, and without a "patient pothole" in the middle of it.

Her appetite is still very light and she is still experiencing some nausea which nobody is able to explain as it should have dissipated by now. Nina is thinking and hoping that her own environment, and food that actually looks appealing might help. When we get home and we're on a lower quantity of meds, that might help things out (what do I know?). There may be a med problem causing the nausea.

Tomorrow we have an appointment with Dr Kaplan who is the head of oncology at UCSF. As far as I know it is just an initial consultation, but *I* think he may request Nina check into the hospital right then and there. I could be wrong and I kind of hope they give Nina at least a few days to unwind after being in the hospital for a month. But it's also important to keep moving as the situation is still there and needs to be dealt with as quickly as possible.

Even though the nurses and Dr Reier showed amazing support and compassion for Nina, I'm glad to be moving on to another place.

December 10th

Well the roller coaster ride continues! Nina has had some shortness of breath the past 4 days, and her heart was racing. She told me it was getting better every day I saw her, but apparently it was not. On Friday they sent her for an echocardiogram. After the exam, I was lucky enough to be there when the cardiologist came in to tell us the results. She had an unusual condition called Takotsubo   (named after the Japanese octopus traps that resemble the syndrome). The good news is that it is easily fixed with beta blockers. In her case the drug she is receiving is Coreg.

So last night I was with Nina and I wanted to wait until she got her first dose of Coreg to see if anything would change afterwards (I don't know why I thought it would work THAT fast!).  After about an hour, I asked her if she noticed her breathing was easier or whether her heart rate had slowed down. She said she thought so. A good sign, so I went home.

At about 11PM I got a call from a nurse and she said Nina has been moved to the ICU and has had a breathing tube inserted into her. I rushed down to the hospital, and I've got to tell you, this is one thing you do NOT want to see of someone you love. It was all extremely terrifying. Tubes in her mouth, hands restrained, machines beeping. It was very tough to be there. She was lightly sedated, but she recognized me, but of course could not talk. I later saw the nurse that called to have her brought to ICU, and she said Nina could not breath properly, her heart rate was 170 (at rest!) and she was turning blue. As I sat there with her in ICU, the heart rate was very slowly going down. It was about 150 when I got there, and by the time I left it was down to 125.  They had given her a sedative to help her sleep, and she did fall asleep. I was all set to spend the night. I brought a pillow, but there was nowhere to sleep, and since she was asleep, and doing better, at 12:30am I decided to go home and sleep.

This morning luckily Margaret (Nina's sister) went to visit her and reported that things were much better and they were about to remove the breathing tube. When I got there about 2pm, Margaret had left, and Nina was sitting in a chair eating applesauce. Her monitors were displaying all perfect numbers for respiration, BP, oxygen. Her temp was 98.7. She was as normal as could be and feeling very good. Bizarre! They had ordered her a regular dinner, and said they may even try and move her back down to her regular room, but it would probably happen tomorrow.

Another bit of good news. UCSF called on Thursday to schedule an appointment with Dr Kaplan this Friday. We're all hoping that there are no more hiccups and Nina is able to be released for that appointment. They were originally scheduling her to be released on Monday, but I'll bet that will be pushed forward a few days.

Nina is very sick of being there. She loves all the nurses and is very appreciative of the caring they've been providing, but she's had enough and wants to move on to the next step.

Tuesday Nov 6th

Nina is definitely feeling better since Saturday's report. The good news is that Reier is planning on releasing her on Monday. Barring any unforeseen problems of course. She is scheduled for a CT scan tomorrow, and a PET scan on Friday.

She has gradually started eating non-liquids. She had chicken and rice tonight with a salad and strawberries. She asked me to bring a flan from Picante. One of her favorite treats. She ate half of that and was able to have the nurses put the other half in the fridge for her. It all sounds like a lot of food, but she only ate a little of everything.

She told me that she actually walked around the hallway, took the elevator up one flight and walked around the hallway there too! Pretty amazing considering that 3 or 4 days ago she could barely move.

Dr Reier prescribed an unusual item for her when she gets home. The reason she prescribed it now is because it's hard to get and she wanted to make sure it was available when Nina is home. It's called Tincture of Opium. It's got an interesting history. It was difficult to find and took a lot of calling around. All the major pharmacies said they could not get it. When I called CVS they said they thought they could get it but I should call CVS at Rockridge. Rockridge said they couldn't get it. So I went to CVS Berkeley in person, and they assured me it would be in on Thursday. We'll see what happens.

When Nina is released, the next step will be seeing Dr Kaplan at UCSF and setting up a plan of action for the stem cell transplant. Incidentally, Dr Reier said it would definitely be an autologous transplant.

Thanks

I just want to send a big shout out to everyone that's been supportive. Your cards and wishes and prayers have buoyed me up and helped me keep my head above water. The low spots have been really low and I know there are more to come but sooner or a later a day comes where I feel better so that keeps me going. If you call and I don't answer I'm either sleeping or being picked and poked by nurses.