Wednesday, October 31, 2007

Back at Columbia

Adrienne was discharged late this afternoon and is now enjoying a long shower without IVs and poles. When she's done, we're going out for a nice meal since the hospital food was as bad as hospital food gets. I tried to go out and get things she'd like but there wasn't much close by.

She is still feeling a bit weak and tired, but she's so much better. The liver numbers are still high but they seem to be coming down slowly. I called SCCA where Adrienne had her allo transplant and they don't think that's the cause but the docs there will discuss it. They think the problem is the clinical trial drug. Hmmm.

Adrienne will go back to see the doctor on Monday so we can figure out what to do for treatment. I'll stay here for 2 to 3 days more to make sure she's okay and then go back to Las Vegas. Curt and I will be back in just two weeks for Thanksgiving. Hopefully she can catch up with her school work between now and then as her profs so far seem willing to do whatever is needed to get her through the semester.

Tuesday, October 30, 2007

Making Progress

Adrienne is doing much better today. She had pizza for breakfast (I know what you're thinking but food is food) and she's sitting up now reading a book for school. Temp is normal and the thrush in her throat is almost gone. The only remaining issue is the liver. We saw the GI people yesterday and they said the problem could be due to the pneumonia, and they'd like to watch and wait. They'll decide at the end of today whether or not to explore further. So all in all, things are good here in NY.

Monday, October 29, 2007

We Have Internet!!!

Sorry for the lack of updates but we've had very limited Internet access. Yesterday, our friend Karen was able to get an update on the blog so you're mostly caught up. We don't know much more today.

Adrienne is running low grade fevers (99-100) but that's a big improvement over a few days ago. She has a major infection in her throat and if that doesn't improve by tomorrow night, they'll go down and take a look. Her liver numbers are up again but her MRI and ultrasound were fine. If they don't improve in a couple of days, a liver biopsy will be the next step. The doctors think it might just be due to the pneumonia so let's keep our fingers crossed.

Yesterday, we were moved from a general medical unit to the oncology unit, and it's so much better. The nurses on the other unit couldn't draw blood from Adrienne's port and they couldn't administer some meds. This is much more of what we're used to and the nurses are very, very nice. We even have a frig in the room.

Sunday, October 28, 2007


Adrienne's fevers got much higher on Thursday night (above 103F with Tylenol) so we went to the ER at New York-Presbyterian Hospital. We were in the ER for 10 hours but Adrienne had her own room and they took very good care of her.

Since then, the fevers have persisted on and off despite her getting the strongest of antibiotics. The pneumonia looked much more advanced on Thursday than it was on her Tuesday scan and totally surrounds the tumor in her right lung. She has some shortness of breath and coughing when she takes a deep breath but otherwise her breathing is pretty good.

Adrienne has been complaining of a sore throat for about a week now and yesterday her pain was up to 8/10 on the pain scale. After a number of cursory looks the last few days, last night the doctor took a lot of time to see as far down her throat as he could and there's both puss and thrush (yeast) in there. They are now treating the thrush and hoping the antibiotics clear up the puss, but it seems that the throat is getting worse and worse. This morning I asked for more continuous pain meds to make her more comfortable. Hopefully yesterday's throat culture will tell us more about the puss.

Apparently, Adrienne's liver function tests were increased when we came in on Thursday night and were up significantly again on Saturday. She's had an ultrasound and MRI of the liver, but we have no answers as of yet. Her liver is tender when they press on it and she has one area of sharp pain. If they can't figure out what's going on with scans, the next step is an endoscopy to visualize the liver better. This seems to be a problem with the bilary system and could be as simple as backup in the gall bladder or as complex as more tumor. Obviously, we're hoping for the former.

Adrienne has been unable to do any school work for a week and missed two midterms last week. They have been rescheduled for Monday but obviously she isn't going to make that. We'll just have to see where this takes us. We're still hoping to avoid a withdrawal but may have no choice if she doesn't improve soon.

We're all trying to remain calm and not overly worry but we know how difficult these situations can be. Adrienne is getting very good care and they are running every test possible. Hopefully she'll be on the mend soon.

Thursday, October 25, 2007

Not Sure What's Up

THURSDAY AFTERNOON UPDATE: I just spoke with the NP. If Adrienne isn't better tomorrow, they're going to admit her and run more extensive tests. This is definitely not what we wanted to hear but I'm sure we'll feel safer with her there.

Adrienne is no better today. The docs had expected the antibiotics to kick in by now but no luck. In addition to a persistent fever, she has a very sore throat, some large lymph nodes in her neck, and diarrhea. The antibiotics she's taking should address all of those symptoms but obviously aren't working so far. She's sleeping soundly right now, which is good, and she ate a few bites of food this morning.

The NP read me the CT report over the phone. Unfortunately, there has been some progression in both the lung and spleen, though it isn't terrible, and there aren't any new nodes. The CT didn't get her neck. It's been less than a month since the last scan. Adrienne still isn't feeling well enough to take the clinical trial drug so we're in a holding pattern.

Dorm life is a bit tough for me, kids walking up and down the halls all night, stereos and TVs on full blast at 3 am. At least Adrienne is able to sleep through it all. I went to her psych class today to take notes. I'm pretty sure I was the oldest coed in the class but I did notice another man with gray hair. (No, I don't have gray hair.)

Wednesday, October 24, 2007

Still Trying to Figure Things Out

Last night, the radiologists went through Adrienne's CT with a fine tooth comb. Her tumors appear to be unchanged (this is good) and the only other abnormality is "consolidation" (a pneumonia) at the bottom of her right lung, right where the tumor is. They are assuming that this caused the abdominal pain, which is better today. Adrienne is still running fairly high temps, in the 101 to 102 range, but she can stay home as long as they don't go any higher than that with Tylenol. She did eat a little bit earlier today and kept it down. Last night, she threw up her two bites of dinner and her pills so it's good she's keeping things down now. Mostly, she's sleeping today and her breathing is fine.

I'm glad I'm here now and able to take care of her since she can't do much for herself. I cleaned her dorm and am cooking for her when she can eat but you can already see that she's lost weight. I don't much like sleeping on the love seat here but I wasn't about to climb into the top bunk, which is about two feet from the ceiling. There isn't a ladder so I would have had to climb onto the desk and then up into the bed. I'm not quite that brave (or young).

Tuesday, October 23, 2007

Looks like Pneumonia

Adrienne was worse today so I hopped the next plane to New York. She is feeling pretty badly tonight with a fever and vomiting. The doctor called while I was on the plane saying the CT looks like pneumonia. That's all we know for now and we'll get more information in the morning. The fever is below 101.3 so we can stay here tonight but I'll take her to the emergency room if it goes any higher. Let's hope we don't need to do that.

Monday, October 22, 2007

Sick - Not Sure What To Do

Adrienne started feeling lousy on Saturday so she thought it just must be the drug. By today, she was running a low grade fever and had abdominal pain, swollen lymph nodes, sore throat, and achiness. She went to the clinic and they aren't sure what's going on yet, but she has stopped the drug for now. They ran a bunch of blood tests including a spot test for mono and did an abdominal ultrasound since the pain appears to be in her spleen. We'll have results in the morning. Needless to say, she feels bad and isn't able to get much work done. She has two midterms and a paper due this week so she's in a bit of a panic. The doctor's office sent e-mail to each of her profs asking them to be patient with her this week as she's trying to get the work done.

I asked the doctor a few hours ago if I should come out and he said to wait until tomorrow. I spoke to Adrienne awhile ago and the fever was a bit higher, just over 100. I'll keep checking with her tonight. Jet Blue has flights every couple of hours from Las Vegas to New York so I can get out there quickly if needed. Needless to say, I'm very concerned, hoping this isn't anything more than the flu but the abdominal pain and fevers are concerning.

Friday, October 19, 2007

Starting Cycle 2

Today is the first day of Adrienne's second cycle of ABT-263. She'll take the drug orally for the next 14 days, take a week off, and then she'll have scans again. Overall, she's doing well but her fatigue has been really bad and she has some wheezing again. The doctor prescribed Ritalin for the fatigue. Yes, this is the drug given for ADHD but they also use it for fatigue in cancer patients. The wheezing is always a concern but isn't bothering her too much so we'll wait for the scans in three weeks to see what's going on in her lung.

We discussed Adrienne coming home in December and going back to CMC in the spring. If the ABT-263 is working, she can stay on the drug in Southern California. If not, she'll go on chemo until another drug, MGCD0103, becomes available. In early clinical trials, this drug has been very effective in patients like Adrienne with recurrent/refractory Hodgkin's Lymphoma. It probably won't be available for at least six months so chemo would be necessary in the interim. Right now, the drug is with the FDA and who knows how long that will take.

Friday, October 12, 2007

First Cycle Done

Adrienne finished her last dose of the drug yesterday. When she first started, it made her gag but she now takes it with orange juice and that helps. She had a fairly long hospital day yesterday for some end of cycle tests but, thankfully, she didn't have to do the eight hours of blood draws. The wheezing has returned but the doctor said that can happen when a tumor breaks up; we're hoping that's the case. The itching was very bad earlier in the week but better the last couple of days. The waxing and waning of the itching is typical for her. Except for a quick blood draw on Saturday, Adrienne gets a week off from the hospital. Woohoo!!!!

Saturday, October 06, 2007

No Weekend Hospital Visits

Adrienne got good news yesterday. Her platelets are still going up so she doesn't need to go in this weekend for labs. Her hemoglobin is still in the 10s so she's tired but otherwise is feeling well.

Last week, I sent some of Adrienne's winter clothes and added some healthy food items from Trader Joes (peanut butter filled pretzels, dried peaches, a cranberry orange bread, some noodles for the microwave, that sort of thing). She loved it except for the dried fruit and I avoid nuts because she hates them. I was thinking that if you wanted to send something, it would really make her day. These were inexpensive items and I sent them UPS ground so it didn't cost much for shipping. Here's the mailing information in case you want to send a little something, e-mail me for the address at

Wednesday, October 03, 2007

Counts Up

Adrienne's counts came back up today, which is a great relief, since we want to make sure she stays on schedule. Overall, she's feeling much better. She made the decision to drop one class after CMC agreed, and she can still graduate on time in 2009.

Trying to do clinical trials while being in school without much support system is proving to be more difficult than expected, so Adrienne wants to come back to CMC for the spring semester and spend the summer with us in Las Vegas. City of Hope will be happy to have her back in December and, if the trial works, she can continue it there. If the trial doesn't work, she'll go on conventional chemo for awhile and I'll probably go to Claremont every other week to take her. In the meantime, she'll have a month here over the holidays, which will be a nice rest for her. I think she feels relieved to have made all of these decisions, although she loves the doctors and nurses at Columbia and enjoys the college.

Tuesday, October 02, 2007

Tougher Than Expected

Adrienne's platelets came up a bit today but her hemoglobin took a big drop, making her really tired. No one is sure what the cause is because this hasn't been reported by other patients. Her stomach is also a bit of a problem. One little bit of good news is that responses to the drug (ABT-263) are now being reported at the dose Adrienne is taking. She's been a bit discouraged with the whole thing and feeling overwhelmed with the hospital time and her school work. She's considering dropping a class by the deadline this Friday, which seems like a good idea with everything she has on her plate. She has a couple of days to make a decision.

Monday, October 01, 2007


Adrienne actually started the trial on Friday and took additional doses on Saturday and Sunday following blood work. The drug can cause problems with platelets so daily labs are required for the first two weeks. Adrienne's platelets are falling faster than anyone else on the trial thus far. Only one person has had a serious drop but we expect that Adrienne's levels will be too low for treatment by Tuesday or Wednesday. Obviously, the goal is for her to take as much of the drug as possible so skipping doses is not what we want. Plus, bleeding is always a concern and Adrienne tends to bleed at higher platelet levels that most people.

Honestly, platelets were our last concern a week ago. Adrienne's have been extremely high for the last few years due to radiation to her spleen and resulting hyposplenia, which just means that her spleen doesn't work. You don't need a spleen to live so this hasn't been a big concern. The hyposplenia is also the reason why we haven't been extremely worried about the splenic tumors since they aren't preventing any functioning and she doesn't have pain. The lung is the major concern.

We'll just have to wait and see how things go this week. Otherwise, Adrienne is tolerating the drug well and feels pretty good, though a bit more tired than usual.

MONDAY AFTERNOON: Adrienne's platelets were unchanged today so she was able to take today's dose. Let's hope that they stay steady for the next 10 days so she can stay on schedule.