Bumpy road

2-26-12: Things are returning back to normal. By normal I mean back to fighting mode instead of dealing with all these side problems. They originally thought Nina had an intestinal blockage, but determined that it might not have been one after all. The small clot they saw in her heart a month ago has been re-examined by cardiologists and is now determined to be a small section of heart muscle and not a clot. They rushed her to have a brain MRI a couple of days ago fearful that some bad stuff had migrated to the brain, but there wasn't any trace of bad stuff. They also did a lumbar puncture yesterday and while the results of that test are not known yet, it is expected to be fine. The cardiologists also said that there is no trace left of the takotsubo episode she had a few months ago and is unlikely to ever return.


Nina is actually feeling better. She has more energy than she had earlier in the week, and is able to walk easier. Her legs are less tingly, and her eyesight is almost back to normal (it had been blurry and itchy). No word yet on whether the tumor has been shrinking on this chemo. Nina says she thinks it has been shrinking, but not sure. In a few days she will be neutropenic and be susceptible to infection.

Her sister Margaret has been spending a lot of time with her this past few days including sleeping over the past 3 nights. Nina said she's enjoying the company and makes her feel less isolated in the hospital.

2-23-12: Last night Dr Reier gave us some updates. The x-ray taken on the 21st did not show an abscess. Nina was complaining about the stiffness of the tube that goes down her throat. It also has a little valve on the outside that gurgles pretty loudly sometimes. Reier ordered another type that is softer and doesn't use that valve, so the old one was removed and the new one was inserted. She noticed the difference immediately and was very thankful. The procedure for putting it in is a little scarey (how would you like someone sticking a tube in your nose and going all the way down your throat!?). So this was about 10:30pm last night. She was agitated by the whole thing, so I spent the night there again.

Reier showed up again in the morning with good news. They had performed an xray last night after inserting the tube (to make sure it was in the right place), and they discovered that the blockage seems to be gone. Right now they have the suction off and will do a test for a few hours. When they turn it back on, there shouldn't be any significant volumes of fluid coming up. If that's the case, the tube will come out tomorrow morning (possibly tonight if we beg).

Reier is adding one more chemo called Vincristine just for an extra push. Nina is very weak right now, so I imagine when this and the Brentuxamab kick in, it's going to be very tough for her.

I would advise not calling her at this time until her energy levels pick up. Texting or e-mail is ok, but not sure whether she'll answer them.

2-22-12: Just got word that the intestinal blockage may be gone. There are certain signs that hint when a blockage disappears. With just a tiny imagination, you can probably guess what those signs are.

2-21-12: They were able to get the Brentuximab a day earlier and it has already been administered. Nina says she feels a burning sensation at the tumor area and the doc said that's actually a good sign. The doctor is not being the least bit gloomy. All of these little side events seem to be just things that are kicked out of the way and the drive to melt the tumor is continued. Her doctor is showing ZERO signs of giving up and I love her for that!

Today Nina is to get an abdominal x-ray to see what's going on. Doc thinks there may be an abscess in there (Nina's tummy is extremely bloated looking). They can easily drain that and continue on.

The weekend doctor had Nina on NPO (nothing by mouth) since having the tube inserted. Yesterday I asked our doctor if Nina could have water or juices and the doctor changed the order so that Nina could have any liquid she wants. That REALLY changed things for her. I went to Piedmont Grocery and got her the good apple juice she likes and she inhaled the entire pint and said it was like "liquid life".

So you could say that everyone's outlook is brighter today than it was a few days ago. We're all betting that this Brentux does the trick. We'll know in a few days whether it's working. Maybe Dr Reier is like this with all of her patients, but she seems to have made Nina her main focus and she's being wonderfully aggressive while still being very compassionate and caring with Nina.

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2-19-12: Well things got a little worse today. Nina has been unable to keep anything down the past couple of days. They did a CT scan of her abdomen and found that she has an intestinal blockage. Probably due to the tumor pushing or constricting on the intestines. They had to insert a tube through her nose and down to her stomach to remove all the excess fluids. The vomiting has stopped and the stomach pressure is almost gone, but she needs to have this tube inserted at least until tomorrow. Also she is not allowed anything by mouth. Not even water. She's not happy.

Instead of starting the Brentuximab on Wednesday as planned, they started another more common chemo today to try and get the tumor reduced so she can have the tube removed. The Brentuximab is due in on Wednesday and it is assumed they will switch to that. Her regular doctor will be back at it tomorrow (Tuesday) and we'll get some more information after talking to her.

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This last chemo looked promising in the beginning, but on the last check a couple of days ago it was determined that the tumor has grown in size. Larger than when she went in for this chemo round.

The plan yesterday was to let Nina go home tonight, and come back in for a new chemo on Wednesday. Unfortunately Nina acquired a "touch" of pneumonia a day or two ago and obviously they want to monitor that situation before release. The latest as of tonight is for her to stay in until Wednesday when she will be given this new chemo called Brentuximab. This one is promising as it targets a CD30 marker which was found in the tumor biopsy. It's also fairly new (less than a year old!) and what I've read of it, it's very promising. There is another chemo possible after this one that is not yet FDA approved. This one targets large T-cell lymphoma. Dr Reier is trying to get her hands on it and she actually knows one of the people doing the clinical trials and she is trying to either get some to use, or find a way to have it administered by someone in the program.

Nina is getting discouraged, but she's still being incredibly strong and she is encouraged by this next chemo round. She's also plain old sick of being in the hospital. She was so disappointed that she wasn't released today, but she totally understands why it's important to be there when things aren't stable.

I spent another night at the hospital with her a few days ago, and it ranks up there as one of the most uncomfortable nights I've ever had. Aside from the wire springs of the cot jutting into every inch of my spine, there was a lot going on. They were giving Nina blood that night and it ran late until about 12:30am. They were constantly coming in all night to hang new IV fluids and check vitals. I feel terrible that she has to go through this hell. They give her sleeping pills every night, so she does tend to sleep through some of these late night checks. Hopefully I just caught things on a bad night. I plan to spend another night this weekend. This time I'll bring my own mattress. And sleeping pills.

By the way, I'm in awe of all the cards and letters she's received from her friends and co-workers. I honestly believe it really helps her keep her identity (if that makes any sense) and stay somewhat sane throughout all of this. She has saved every single one, and plans to write everybody when she gets through this.

Sam

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