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.

Saturday Visit 12-3

So Nina is climbing out of a relatively aggressive dose of chemo. On Thursday she felt like she was at rock bottom, and had a white blood cell count of almost zero. She was barely able to move and just talking was extremely tiring. It was kind of scary. But Friday she felt a little better although still extremely fatigued. Saturday she felt even better, and she just informed me today that she is feeling even better. So the trend seems to be going in the right direction!

She is not really able to talk on her phone for more than a few seconds, so unless it's important, I would avoid calling. Visits are definitely out at this time. Not just because of her fatigue, but also because she is neutropenic and she is at high risk of bacterial infections. Ann or Margaret (her physician sisters) can correct me if I've got the terminology incorrect.

Her spirits are still high throughout all of this and her nurses are excellent.


Today I am bringing in some softer TP, a few sections of the NY Times and also a terminal strip for her IV pump trolley. She's got 3 IV pumps and a morphine on-demand pump (I don't know the technical term) on one pole on wheels. When she has to go to the bathroom (like in the middle of the night), she has to unplug all four of these devices, hang them up on the pumps so she doesn't trip over them, then plug them all back in when she's done. It's barbaric. I'm going to strap a terminal strip on the pole, plug all 4 devices into it, and then she'll just have the one cord to deal with. They might not like it and tell me to get rid of it, but it's worth a shot.

Sam