No words

We're going to take Adrienne of the vent in the morning. The doctor assures me that she won't have any pain or fear. Everything that could be done has been done.

What kind of fungus?

I understood that Adrienne had Candida but after talking with the infectious disease doctor today, they don't actually know what kind of fungus she has. It takes awhile to grow it out and it could take another day or two to get a final pathology. Best case: this is candida and she's on the right antifungal. Worst case: this is aspergillosis and this is very, very hard to treat.

The onc sat down to talk to me today about "where we're at." Of course, her prognosis isn't good and he's worried to give more chemo and possibly destroying her marrow. (BTW: White count is high now, HGB went up, and platelets are stable.) My feeling is, if we do nothing, she'll die. If we give chemo, there's a risk she'll die but there's also the possibility (albeit small) that she'll recover. So where's the risk? I was sort of caught off guard so I didn't go through my logic with him but I will tomorrow. I know that Adrienne wants to try everything and trusts Dr. O more than anyone. Like I keep saying over and over, it's not up to me or anyone to make a "final" decision for another person.

The other development is that the insurance company is pushing to move Adrienne to a long term care facility. Maybe "pushing" is too big a word. They're inquiring and this was expected since she got the trach. The docs have been clear that she's too unstable to move, especially with the fungal infection. I've done a little checking and there's a really nice (new) facility right near our house and they also have an ICU. This might actually be a good option for her. We still need to do more investigation but we're taking it a day at a time. Let's see what the cultures tell us and then we can decide the next steps.

No changes

Adrienne is doing about the same. Every little thing is an event here in ICU but I'm trying to take it in stride. Her regular oncologist is the physician on the inpatient service for the next 7 days. I thought he was going to cry when he came in this morning (what a nice man). He's been keeping up with what's going on but now he'll be here every day. No, he didn't say no chemo, he just didn't want to give it while her counts were so low and Dr. O agreed. But, there isn't much to do until this infection clears up. She got a new catheter last night and is getting a new PICC line today. I'm glad they aren't talking about removing the port-a-cath but I wouldn't be surprised if that comes up too. Otherwise, things are fairly stable or at least as stable as they can be and she hasn't had any fevers since Friday.

As I've said in previous posts, I'm very happy with Adrienne's care here (except for a-- onc and he didn't make any mistakes, just wasn't helpful). Yes, she's getting antifungals. She was on them while neutropenic but they stopped them as soon as her counts came up to give her liver and kidneys a break. She's been treated at several top, top institutions (Stanford, Seattle Cancer Care Alliance, City of Hope, New York Pres/Columbia) so I know what to expect, what to ask, when to be a pest and when to let everyone just do their jobs. I think her care here is as good as she would get anywhere and, if anything, they're being extra cautious and careful about everything and things definitely happen quicker here than at a larger institution. All of her docs here have come from fine institutions including the pulmonologist who came from Sloan Kettering and has been here almost every day (someone covers when he's not here). The docs here are working from an extreme disadvantage caused by the cancer and they're doing the best they can in an impossible situation. You can't rush this, people react differently to different things, and sometimes things just happen.

Disseminated Candida

So, it looks like Adrienne has Candida (yeast) pretty much everywhere: lungs, urine, and blood. This could also be causing the GI issues and the new findings on the chest CT. No chemo until this is resolved and it could take time. This is a normal fungus that we all have but it can become disseminated in immunosuppressed people. This is serious (as if everything else isn't serious?) so we'll just hope/pray that the antibiotics can do their job.

I miss Adrienne

Even when Adrienne was away at school, we talked every day. Once in awhile, I decided to leave her alone so she could study or whatever, and she'd always call me. We just liked to discuss things and didn't have too many taboo topics. We both love food and the same TV programs and movies and shows. Well mostly. I don't get the attraction to How I Met Your Mother and Adrienne doesn't like Law and Order. She definitely likes shopping more than I do. I talk to her here but it isn't the same since she can't talk to me. I just miss her so much.

Long long night

Yesterday's scan showed a pneumopericardium caused by the vent pressure. The treatment is to paralyze her and then do some magic with the vent...except that it messed up her blood gases really bad. They were in and out all night. Thankfully, things settled down this morning.

The scan is a bit confusing. The cancer looks improved but overall, the lungs look worse and they don't know why. The feeling is that it's probably new infection but we won't know until the bronch washings are back on Monday. It could also be lymphatic spread of the disease. Again, the bronch will tell us.

Adrienne's counts are great and even her platelets didn't go down today. The only new thing is that her liver enzymes are way, way up. They're going to repeat the blood work to see if this is real or a lab error.

Not bad news

I talked with the pulmonologist again after he reviewed the CT. He thinks there are fewer nodules but wants the official report from the radiologist. There's some new ground glass opacity, which usually indicates pneumonia, plus air around the heart, which is caused by the pressure on the ventilator. These factors could account for the fact that her breathing hasn't improved. Also, she's got a fever and low BP this afternoon. Hopefully the fever is just from the bronch and will go away on its own by morning.

Don't know much

Adrienne had the bronch earlier and just got back from the CT. I saw the onc and she'll meet with the radiologist first thing in the morning so we'll know more then. The bronch didn't show much, no nodules (cancer) and the airways are large and clear. There is redness, which indicates inflammation, but that's it. They took some washings. So, we don't really know anything except that they had to go up again on the vent this morning.

Tomorrow

Tomorrow, Friday, has the potential to be good or one of the worst days imaginable. After I talked with Dr. O, he spoke with Dr. M (the NVCI doc) and they decided that Adrienne should have a CT. It makes sense. We want to make sure the chemo is in fact working before doing more. But, it also means that we could find out that the chemo isn't working. The pulmonologist keeps telling us that her chest xrays look better and we've taken that to mean that chemo is working, but it's possible that everything else is better but the tumors aren't. Her breathing hasn't really improved. Will more chemo make a difference? I can't come up with words to explain how awful this is. They're going to send results to Dr. O as soon as they're available and we'll talk to Dr. M in the afternoon. If ever prayers were needed, this is the time. I'm so scared.

Talked to Dr. O

He and the doctor here have been playing phone tag but I'm sure they'll figure it out. Dr. O, of course, says we have to do whatever we can and he would do the same if Adrienne were his daughter. He told me about another young woman in a similar situation, who got GND and off the vent, and went on to have a transplant and was cured. He admitted that if SGN-35 weren't on the horizon, if there were only a few drugs in phase 1 trials that weren't proven, he probably would stop treating, but it is on the horizon and it could be just what we need. There are no guarantees, of course, but he thinks we have to try. I mentioned the doc here who refused to give Adrienne the Neulasta shot and the visit from Robin, and he said that there are a lot of people in this business who decide the outcome of the experiment before trying it, an interesting way of thinking about it.

Adrienne will have a bronch in the morning to make sure there isn't anything else in her lungs. We're also hoping she can get a "PEG tube" placed at the same time since she's been vomiting all day with the NG tube feeding. She really needs the feeding directly in the duodenum and not in or near her stomach. Then hopefully she'll get chemo on Saturday or Sunday. She's doing much better on the trach today. They changed the sedation and all her vitals are much better (heart rate, BP, sats) and she isn't gagging any more. We aren't able to wake her right now but she's resting so nicely that we don't want to bother her.

LATER UPDATE: The NVCI doc was just in and she and Dr. O have connected. They agreed that a scan is in order to see exactly what type of response Adrienne had to the last chemo. She had a CT just before so they have something to compare to. I'll know more in the afternoon.

COUNTS!!!

Adrienne has counts today. ANC is over 1000!!!! Even her hemoglobin went up. Platelets went down but she didn't need a transfusion this am. Blood gasses are improved. Billi is down to 1.8 and she's tolerating the tube feedings again. Even her heart rate is down. So, I'm hopeful that she'll get chemo soon, not today, but soon. She's having a really tough time adjusting to the trach and it would be good for her to be more comfortable first.

Why post?

You may wonder why I post so often and so openly. I think it's cathartic to some extent, helping me sort out my thoughts and feelings. I have Adrienne's iPhone and it's much easier posting on this than my Blackberry.

I can't stop replaying Robin's visit in my head. I know she meant well and believes every word she said. I also know that there are several people who read this blog who've been in our position. It's an awesome responsibility, more than anyone should bear. Robin looked me straight in the eye and said that Adrienne won't recover from this. While I know the odds are slim, I couldn't live with myself if we don't exhaust every possibility. Who am I to make any decision about another person's life? I'm sure that Robin didn't make that decision for her son until she was sure that every possibility had been exhausted. There has been talk here about keeping Adrienne on a ventilator indefinitely. Believe me, that won't happen. But I won't end the life of one of the most important people in my life, someone I'd switch places with in a second if I could, unless I feel that there is no real choice.

Thanks for all the sleeping suggestions. I have my own little system from benadryl to Tylenol pm to Xanax. It would be nice to have something for those awful days when we get bad news or I just can't stop crying, something to help me get through the day while still helping Adrienne. Sometimes, only my voice comforts her and I need to be here for her.

What's between nothing and Xanax?

This is a real question. If I take Xanax, I sleep for 8 hours. If I take nothing, I'm a nervous wreck. I asked Kent this question the other day and he said, "Chardonnay." Okay, I'm good at that but other suggestions are welcome.

We got clarification from the doc: no chemo TODAY. They want to wait until her counts come up and they're coming up, bit by bit. She has lots of monocytes so that means the rest will follow. Her platelets are in the toilet and we'd like for them to be higher but they can transfuse as necessary and that seems to be okay with everyone. So, we'll wait a few more days. I ask the pulmonologist every day if anything is growing and it isn't, so we have time. We have as much time as we need. We aren't going to do anything that will be "final" until everyone agrees that there are no treatment options left. We need to do that for Adrienne and for ourselves. I ask the doctors each day if she's in pain or suffering and they assure me that she isn't. Well, except that trach is a bit disconcerting. Every time they move her, she gags and it takes some times for her sats to come back up. They say this will get better in time but we weren't prepared for that at all. Still, it's nice to see her face again and she has beautiful rosy cheeks. Her skin looks great everywhere, no bed sores or even irritation. That $30K bed seems to be worth its weight in gold.

NVCI Visit

Adrienne had the trach done today. I was really nervous about it, especially when they had to bag her to take her from her ICU room to the operating room. The OR is just down the hall so it wasn't far but still, it was hard to watch. That all went fine, however, and she'll probably sleep soundly the rest of the night. The nurse brushed and flossed her teeth and it's nice to see her beautiful lips again.

Right after arriving back in the room (they asked me to wait outside until she was situated), I received a visit from Robin, her nurse practioner at NVCI. I thought it was a social call. It wasn't. NVCI refuses to give Adrienne chemo "at this time." She didn't know if they would reconsider if her counts come up or if this is a final decision. They believe that they are prolonging her suffering and that she won't recover. Now I have to say, we aren't naive about this or putting our heads in the sand. At each stage, we've asked if she has a chance to recover and we've considered all of the options. Living a life on a ventilator, even if it could keep her alive, isn't what she or any of us want. Besides being heartbroken, I'm extremely angry. Before doing the trach, we asked if she could recover. The docs spoke with Dr. O and we all decided to go ahead with this. It's hard to think about but we probably would have taken her off the vent yesterday or today if she couldn't recover or receive chemo.

I should add: Robin took her son off a ventilator 15 years ago. He was about the same age as Adrienne, was a hemophiliac, and had AIDS. She isn't being mean at all, just giving her opinion.

The internist came in just after and assured me that Adrienne isn't suffering or in any pain whatsoever. She isn't living, that's for sure, but she isn't suffering and the trach makes her more comfortable. We haven't made any irreversible decisions by letting them put it in.

Nurse Ratchet?

I was a pretty happy camper last night after meeting the new onc covering the inpatient service. She's a lovely lady from the south who's willing to do whatever is needed for Adrienne and to work with Dr. O, who will be back from Berlin today. They are planning a call this afternoon and we hope that Adrienne can get chemo Wednesday or Thursday. Her WBC came up just a little bit today and her monocytes are way up, indicating that everything else will follow. We all understand that whatever we do has a lot of risks but doing nothing is even more risky. I get it. I don't need anyone to tell me how risky this whole thing is.

So, I wake up this morning to see yet another new nurse, after I specifically requested that Adrienne get the same nurses, those that know her and who will work with me since she only responds to my voice. Not only was this a new nurse but a nurse we refer to as Nurse Ratchet. Why? Because she stops you if you bring food or drink (usually coffee for me) into the unit. The other nurses don't say a word even though it's posted that you can't bring anything in. After I got the sleep out of my eyes, I had a little talk with the charge nurse and now Adrienne has a nurse who's taken care of her before. So, we're working on this issue again with the help of Rose, who's the chief chemo nurse and who comes to see Adrienne everyday even though she works on a different floor.

The trach will be put in this afternoon. I waited for ENT for a long time last night, but of course, as soon as I stepped out, he came in and then I missed his call. He left a long message saying this is a "low risk" procedure, not once, not twice, but three times. Okay, I believe him. I know that Dr. T asked for this doc specifically because he has a lot of experience with radiated patients. I'm sure we'll talk before the procedure but I left a detailed list of her radiation treatments to the trach area so he has that. She got platelets this morning (platelets were at 8) and she'll get more 2 hours before the procedure to make sure they're over 70. She gets special platelets (single donor, irradiated) so it often takes time to get them but they're preordered already.

Curt was driving behind a guy this morning who's license plate said "HI CURT". Must be a good omen but we wish he had a camera.

Like herding cats

Trying to get a bunch of doctors in a room is like herding cats. They never come at the same time two days in a row and they often say conflicting things. Add to that, I called Dr. O's cell and it turns out it was the middle of the night in Berlin. He was really nice about it, and he and the pulmonologist discussed the state of Adrienne's lungs so that we all understand where we're at.

The long and short of it is: it's the tumors that are causing the breathing problems, and the liver and other issues are secondary to that, minor issues really in the scheme of things. Adrienne's lungs aren't scarred beyond repair and the situation is reversible if we can get rid of the tumors. Everyone is worried about giving more chemo while she is so immunosuppressed but we feel like we have nothing to lose, and it shrunk everything significantly the first time. Adrienne's counts are still in the toilet (a little uptick today) but we don't feel like chemo poses any more risk than the rest of the situation. So, we'll make a go-no-go decision on Wednesday for chemo. The trach is risky, but not any more risky than anything else, and they think she's strong enough to get through it. We'll talk to the ENT tonight and do it in the next day or two. We aren't making a permanent decision by putting the trach in and everyone agrees that it's a temporary solution. The goal has always been to get her to SGN-35 and just pray that it works. In the meantime, we don't want to cut off any options or make a permanent (disastrous) decision.

Thank you for all the notes and comments. We had talked a lot about "what if" before this all happened and Adrienne was clear about what she wanted and didn't want, but she wrote a healthcare power of attorney that allowed me to make decisions without restrictions. I don't want to make any final decisions as long as she's comfortable and not in pain, and she is comfortable and not in pain. As long as Adrienne wants to fight, we'll be here.

Big decisions

I went home today to shower and do laundry. It might not sound like a big deal but it was for me. I don't take naps but there's plenty to keep up with. Uncle Kent spent the afternoon with Adrienne watching football, which she hates. Oh well. Most of the time ee leave the TV on with things she enjoys. Dirty Dancing just started.

Tomorrow is a big decision day. We can't leave the tube in much longer and Adrienne needs a tracheotomy. Dr T found an ENT with a lot of experience with people who have had a lot of radiation. Still, the procedure is extremely risky. Between the risk of bleeding and infection plus the procedure itself, this isn't your normal trach. We really need to think about what Adrienne would want. I think the decision depends on whether she can make a meaningful recovery. I'm going to call Dr O tomorrow and I also want to know what the pulmonologist thinks. This is really tough, to say the least. We don't want to lose any options but we know that Adrienne wants a meaningful life. We've had some tough days but tomorrow is sure to be one of the toughest.

Thoughts

A lot of you sent notes and commented on what the doc said yesterday. He didn't say anything we didn't already know and, in fact, he's been extremely careful in what he says all along. They can mechanically ventilate her lungs but they can't make her blood cells oxygenate. She's fluid overloaded and dehydrated at the same time, which is caused by the disease itself. They give her albumin and lasix but then her albumin goes low again and she pools fluid. Her sodium is too high so they typically give fluids but they can't give much because she's already fluid overloaded. If her sodium gets too high, she'll seize. She still isn't making any blood cells. Her liver function is better and she's tolerating the feeds but this doesn't fix her lungs. Everyone comments on her "fight" and strong will. Most people wouldn't have survived the first pleural effusion, much less the second, but she's still fighting.

We've always made the best of a bad situation and tried to live as normally as possible. 3 days before Adrienne went into the hospital, we were walking around Santa Barbara with the dogs. A week before, we were in Chelsea Market in New York and running through the street to go see "Julie and Julia." She was ready to start classes the day after she was admitted and wouldn't let me drop them until she'd been here a week and she knew she wouldn't catch up.

The problem is this f--ing disease, the so called good cancer. It was manageable until late last year and then it totally changed character, growing out of control. We just don't have good enough drugs and chemo sometimes just makes things worse. Adrienne always took it in stride, much more than me, confident that there would always be something there for her, that things would be okay. She wants to live as much as anyone I know. No one here is giving up but we aren't the type of people to bury our heads and pretend this isn't happening. More than anyone, I wish they could fix her and life would just go back to normal, that we could go out to dinner and a show, watch our favorite TV shows with the dogs, just be ordinary.

More trouble breathing

While most things are looking better, Adrienne's breathing is getting worse. The chest xray is unchanged but she's needing more and more ventilator support. The doc says "if she makes it through the weekend," she'll get the trach on Monday.

L'Shana Tova

I don't recall ever having spent the New Year like this but I'll be happy if the day turns out like yesterday and last night. I don't have counts yet but Adrienne's biliirubin was down quite a bit yesterday and she's tolerating the feeding tube pretty well. They want her to get a faster rate so she gets more nutrition but we understand that it might take a few days until she can tolerate the full rate.

Breathing seems about the same but it's hard for me to tell. She's trying to breathe over the vent so we know she has some ability to breathe on her own. They added a new steroid yesterday so hopefully that helped some.

I talked to the ICU manager yesterday about getting more consistency in the nurses and also the best ones. I said I know that they're all competent but that they know who's best. So far, so good. I've decided to just ignore the onc. He'll be gone on Monday and her counts won't be good enough for chemo before then anyways.

Quiet night

This is a good thing in the ICU. They made a change in Adrienne's sedation yesterday and she definitely seems to be more comfortable. The sedation has been tough because she's so small but has had so many drugs over the years. She needs as much sedation as a 250 lb. man. I definitely need to give her a bad time about that when she's awake. The sedation difficulty makes the nursing situation more difficult too, because each nurse needs to learn what works best for her. I spoke with the ICU director this morning and they're going to work on more consistency. Of course, we have our favorite nurses but they aren't always working.

Adrienne's chest xray looks a bit better today while her breathing is a bit worse. They're going to change her steroid today to see if that helps. I understood that she would need a trach by tomorrow but they replaced the tube a couple of days ago and she can keep it for another week. Hopefully, things will turn around by then and they can extubate rather than do the trach. She still has no white count and is needing platelets every other day so they really don't want to do any surgery.

The tube feedings are going fairly well. She's getting it at a low rate but at least her gut is responding and it isn't coming back up. Her billirubin finally went down a little today so we hope this will turn into a trend.

The mochi/matzo thing made Curt and I laugh, because Kent thought they were the same thing. Obviously, they sound a lot alike but aren't anything alike. Like many of you, we get our mochi balls at Trader Joes. Any good (Jewish) deli, especially on the east coast, will have matzo ball soup. I make really light, fluffy matzo balls with homemade chicken soup but they're definitely "cannonballish" if you aren't careful, sitting like a rock in your stomach.

No sleep

I've been sleeping on and off since early this morning. Adrienne's BP was very, very low all night so they were in and out. The thinking right now is that there's something infectious going on. She has new edema in her lungs and is coughing stuff up with the help of suction. Everyone is doing everything they can. I'm just trying to keep her calm when the commotion starts and/or the alarms are going off. I don't know much more, justing taking it a minute at a time. She's comfortable and doesn't have any pain. She's responsive when I talk to her and has no memory of what's gone on, even 5 minutes earlier, so that's a blessing.

Matzo Balls
Matzo balls are a traditional Ashkenazi (East-European Jewish) dumpling made from matzo meal (ground matzo). The balls are shaped by hand and dropped into a pot of salted, boiling water or chicken soup. The balls swell during the boiling time of approximately 20 minutes, and come out light or dense, depending on the precise recipe. Matzo balls are roughly spherical and can range anywhere from a couple of centimeters in diameter to the size of a large orange, depending on preference. They can be frozen and reheated in soup. Matzo balls are usually served with chicken broth as matzo ball soup. Adrienne loves my matzo ball soup and always asks me to make it when she's home.



Ice Cream Mochi Balls
Mochi ice cream is a Japanese confection made from mochi (pulverized sticky rice) with an ice cream filling. Mochi ice cream can be considered finger food, or is eaten while on a toothpick. Mochi ice cream can vary in diameter, but is comparable to a golf ball in size, shape and weight: 45 g mass and 45 mm diameter. There are two layers: a soft, dough-like outer mochi shell, and inner ice cream core. Flavors are dependent on brand, however, matcha (ground green tea), chocolate, and vanilla are likely to be represented. Strawberry, mango, and red bean paste (azuki) are also common flavors. Adrienne likes the chocolate and mango ones.

Mochi vs matzo

Ok, so I'm looking for some distraction. Adrienne started throwing PVCs tonight. All of the alarms were going off and the crash cart came in (still here). This looks to be a problem with low potassium and magnesium (going in now) so we'll just have to pray. I don't expect any sleep. Her cardiac enzymes are elevated but not significantly, so hopefully these infusions will help. Just when I think I'm cried out, I find there's plenty more where they came from.

Of course, this all happened just after Curt and Kent left for the evening. So what's the difference between mochi balls (Japanese ice cream balls) and matzo balls (or cannon balls as we affectionately referred to them when I was a kid)? Kent now knows. Do you?

Btw: who's "A Mom"? Do I know you?

Where are we?

I wish I knew how to answer this question. Adrienne was doing fine on CPAP, one step down from extubation, but then started having trouble around 7 am. She's back on the full vent again with a new tube down her throat and she's very sedated again. She's a fighter. All the docs keep telling me that. The chest xray is the same as yesterday so no one knows why she suddenly started having trouble again. They'll try again tomorrow to go down to CPAP. The big issue looming now is that the breathing tube can only stay in for 14 days and then she needs a trach. That's a concern because she has no platelets (she got them again this morning) and she's had a lot of radiation to that area. It just might be too dangerous to do the procedure. We'll need make some decisions br Friday.

Adrienne got a new NG tube that goes into her intestines. Those feedings seem to be going better. Her liver numbers were stable today. If this is all working, her numbers and yellowness should improve in the next few days. One of the nurses didn't like the yellow gown either so now she's in a nicer blue one.

WBC came up a little bit today. Yeah! A--hole doc came in during the commotion for the ventilator so I decided to ignore him since I wasn't up to a confrontation at that point in time. I spoke to Adrienne's onc here and was pretty frank. He's going to stay involved and make her treatment decisions with Dr O. I can see the next big argument this weekend when she needs chemo and doesn't have any platelets. Otherwise, an onc isn't really needed right now.

Afternoon update

I love Dr T (the pulmonologist) and Dr N (the internist). Dr T was surprised about the vent issue this am since Adrienne's chest xray actually looks better. He got the RT to spend about 20 mins changing the vent settings and actually skipped a step in the step down. Seems that Adrienne is breathing too much on her own. They're going to sedate her more so they can do this step down and just pray that she can still get off the vent. She can only keep the tube down her throat for 14 days and they would need to give her a trach to stay on the vent. I know that she wouldn't want that.

Dr N and the nephrologist had another idea about how to stop the TPN to give her liver a break and to try to get her gut moving again. We'll see how that goes.

There's a new onc attending from NVCI and we really don't like him. He's very negative and averse to Dr Os suggestions. I've asked Adrienne's regular onc here about how to get another attending. I'll update when I hear something.

Liver failure?

It looks like Adrienne's liver is failing and there aren't any treatment options. They tried to feed her with NG tube yesterday and she threw up more than what went in. Liver numbers are up again today. They also tried to turn down the vent settings without success. Blood counts are still nonexistent.

Doc update

The pulmonologist wasn't so worried about this morning's back step. He hopes to extubate by the end of the week. Wouldn't that be amazing? The chest xray is the same as last Friday but a 50% improvement overall.

I spoke with Dr. O a little bit ago and he's happy with the response. He said she's supposed to get chemo on day 1 and 15, not on day 1 and 8. He says her counts should come up by then. She got platelets and red cells this morning. Now we just need to get the sedation right.

Bad night

Yesterday, they took away Adrienne's propofol. I understand that you can't stay on it too long and they think it's contributing to the liver issues. They replaced it with dilaudid on demand. The problem is that by the time I ask for it, she's frantic. They tried turning down the vent again this am and she "woke up" and was trying to pull the tube out and get out of bed. I don't know if the vent change really was the issue or if it's the sedation. Needless to say, I'll discuss this with the doc and the charge nurse today. Most of the nurses are wonderful, but of course, last night's argued with me about everything. I'll request that she not get him again.

Adrienne's counts are still awful. She got platelets already this am and is getting red cells now. I asked the (pita) night nurse about the white count and he said it was back down after yesterday's little jump but I need to verify that. I'm going to call NY today to find out what the lowest threshold is when we can give chemo again. The fear has always been that if she gets too much chemo, we'll destroy her marrow. She's definitely showing these signs and we can only hope that her counts will recover sooner rather than later.

3 weeks

Ok, I look at the calendar a lot. Adrienne was admitted here 3 weeks ago. Her longest hospital stay prior to this was 30 days in 2003. I'm sure she'll be here longer than that this time, but I'm starting to imagine taking her home. That would be so amazing.

They turned down the pressure on the vent today and she's tolerating it well. Her WBC came up a tiny bit so that's good news. Hopefully, she'll get chemo again within the week. Her chest xray looks better each day. Let's just pray that this continues.

A week

Adrienne has been on the vent for a week now. It all seems so unreal and time moves in slow motion. She's about the same as yesterday. They had to go up a little on the vent but they tell me this is nothing to worry about, just a small adjustment. She still has no white count or platelets so there will be no chemo tomorrow. Billi and enzymes are up again too. They have her in a yellow gown so between the gown and her yellow skin, she looks like a lemon. We've seen this before during transplant so I'm not super worried. Her white count is the big concern because she can't have chemo until it comes up.

Sludge

Adrienne's liver issue is due to sludge and gall stones. It sounds bad but it's not. She's had this before and it clears up with mess. They're also changing her TPN schedule to give her liver a break. Vent is down to 45%.

Yeah!

Adrienne's chest xray is 50% improved over the last 3 days. They just turned down the vent to 50% and she seems to be tolerating it well. She's still very sedated but cried yesterday and today when awakened. It's so hard to watch but they promise that she won't remember this.

We still have some big hurdles to get over. She's still neutropenic and can't get her chemo until her counts come up. Chemo is due on Sunday so we hope the neupogen kicks in by then. The other big issue is her liver. She's quite jaundiced now and had an ultrasound a little while ago, which we hope gives us some answers.

The physical therapist was in earlier so now we're doing range of motion exercises with her. She doesn't seem to mind.

I'm ok

Since you asked, I'm doing fine. I'm eating and even sleeping with a few pharmaceutical aids. The hospital has fairly good food and, even though they don't allow food in the icu, they let me bring stuff in. Adrienne is on tpn so I don't think my food poses a risk to her. My brother in law, Kent, is here for a few weeks to help out too. Thank you so much, Kent. He even got to chase Caesar around the house this morning so he could get his bath.

I don't have much news on Adrienne since we've only seen the onc. She still has no white count and her liver numbers are up even more. Her breathing seems good so I'm hoping they can go down on the vent settings again today.

Infectious disease day

It seems like one or two things stand out each day. Usually, it's the pulmonary situation, which is stable or maybe a little better today. Hopefully tomorrow will bring some positive changes. Adrienne's very low (nonexistent) white count is definitely a concern but she hasn't had a fever so far so that's good.

The infectious disease doctor comes in each day and usually, I don't get anything positive from him. Yesterday, I asked about adding acyclovir due to Adrienne's low white count. He was concerned because she just had chemo but today the acyclovir showed up. Today, I asked about the high billi and mentioned that the only other time we saw this was during Adrienne's allo transplant. Wow, we had a long discussion about dapsone, hemolysis, gvhd, and even genetic differences between Ashkenazi vs Sephardic Jews (we're Ashkenazi). Apparently Sephardic Jews have some genetic differences that can result in hemolysis and high billiirubin. He offered to make some calls to check into some other treatments for the Hodgkins and I told him I was happy for however he can help.

Adrienne is resting comfortably tonight. She's a lot tougher than she looks.

Good and bad

Good: The chest xray shows some improvement, sats are good, blood gases are normal after a vent change yesterday. Bad: billirubin (liver function) is up, white count is nonexistent. Let's hope she doesn't get a fever.

Long days

I've known enough people in Adrienne's situation over the years to know that this is going to be a very long, slow process. We hope for progress each day but sometimes it doesn't come. Today is one of those days. There have been a few minor changes to the vent settings. One doc says the lungs sound better, another says they sound the same. I have to remind myself that this is only day 4 on the vent, the chemo takes time to work, and her lungs will take time to heal.

Labs are being done twice a day so that's a constant but known change. I haven't discussed it with the onc, but I assume she'll still get chemo on Sunday even if her counts haven't come up. I don't think we have a choice.

Adrienne nods, shakes her head, and squeezes my hand when I ask questions. No, she has no pain. No, she has no shortness of breath. Yes, she wants to have her mouth swabbed. Yes, she likes it when I rub her feet. Yes, she's comfortable.

No change

I don't know much more. Adrienne is either the same or slightly proved. She's severely neutropenic but no fevers, which is good. I'll update later after the pulmonologist comes by.

Late update

Sorry, I just realized that I didn't actually post the earlier update. Not much has changed since then. They've been able to go down on the vent settings today to 60%. She seems to be tolerating it well as long as she stays sedated and doesn't try to breathe on her own. She's now severely neutropenic and will need platelets again tonight or tomorrow morning. She had a lot of blood in her pee earlier and they think it's from the low platelets. I hope that's the case. We haven't seen the nephrologist yet today so I don't know too much more about that.

She got a fancy new bed last night that moves her around and does percussions to prevent pneumonia. They say it costs more than a car. She doesn't seem to like it much but we know it's good for her.

A little better

The chest xray shows small improvements but everyone agrees that her lungs sound much better. The vent is currently on 80% so they're going to lower it to 70% today and then see how she does. The goal is to get to 50% as soon as possible. There's a bunch of blood in her urine all of a sudden but I seem more worried than they are. Her platelets were at 13 yesterday so she got platelets last night and now they're up to 55, which is good. The nephrologist is supposed to be coming soon

We've gotten quite a few cards. Thank you so much. When she's awake (which she is too much), I show her the pictures. Keeping her sedated is tough. Plus, she's stubborn. She won't squeeze the nurse's hand or wiggle her toes unless I tell her to. She has to stay sedated so she doesn't try to breathe on her own.

No change

Things are about the same. The chest xray showed no improvement but the doc thought her breath sounds were a little bit better. The xray is still what they call a white out. Vitals are stable.

Intubated

The past 24 hours has been nothing short of a nightmare. Adrienne was doing okay on BiPAP yesterday and they were getting ready for her chemo. She had to get a 6 hour infusion of sodium bicarbonate so chemo was supposed to start around 7 pm. Late in the afternoon, she woke up and tried to take the BiPAP mask off, and when she did, she turned blue within seconds. One of the nurses held the mask to her face and the decision was made to intubate. We made sure she could still get chemo while intubated; otherwise, we wouldn't have done it. Her pulmonologist (bless his heart) came from his home on a Saturday night to do the procedure. The whole thing took about 20 minutes but it took until this morning to get her stabilized. Her BPs have been all over the place, she was bleeding from her stomach and lungs, and her heart rate was very high. She got two units of platelets last night and two units of whole blood this morning and we haven't seen any more bleeding.

This morning, her ICU/chemo nurse came in just for her and she got her chemo. The first two were fine but her heart rate rose a lot for the Doxil. It went back to normal after the infusion was done. Her BPs are still a bit all over the place but they have lots of meds for that and are watching her closely. Her oxygen sats are good and the ventilator isn't even very high (70?).

Now on to the fun stuff. Keeping her sedated has been a challenge. Before the intubation, her big concern was being awake and feeling it. She was asleep for that part but since then, she keeps waking up. They have her on a propofol drip, a morphine drip, and now added an ativan drip this morning. No one can believe that such a little girl (all 93 pounds of her) needs so much sedation. All these years of procedures and medications has led her to build up a huge tolerance. She was really awake this morning, which frankly, scared the crap out of me. After a bit, she started writing on a pad of paper, most of which I couldn't read, but I got the gist. Her mouth was too dry. She wanted her head raised. She wanted to make sure that the premeds for her chemo were done correctly. She asked if I had talked to the docs (she saw them but didn't remember). She even asked me to turn the TV on. Still Adrienne, thank goodness.

Curt is with Adrienne now while I came home for a shower. I've been washing my hair in the sink and taking sponge baths all week. She's stable right now and we can only hope and pray that the chemo works. We should know in a day or two if it's having any effect.

Spoke too soon

They're going to intubate in a little while.

PICC Line In

Adrienne always said that she has had every kind of venous access device except for a PICC line. Now she has one of those thanks to lots of IV Ativan, which she'll get around the clock to help with nausea and anxiety.

Her breathing was bad again today and they wanted to intubate and do a bronc. We asked to try the BiPAP again and she is doing much better on it, especially with the Ativan on board. Some people can't tolerate it but she's a champ.

Chemo will start around 7 pm. She needed some drugs to prevent tumor lysis syndrome and those will be done then. Her nurse is a chemo nurse from Fred Hutch and she's going to stay tonight to make sure everything goes well (thank you Kathy). It only takes about 1.5 hours to infuse everything. Adrienne has had 2 of the drugs before and found them pretty easy to deal with so let's hope it's the same this time. She tends to have worse reactions as time goes on. Her platelets were only 40 today so they'll be keeping a close eye on that.

She's resting comfortably right now.

Curt went to see Naomi earlier. She didn't recognize him. This doesn't sound good. We love you, Naomi.

GND it is

Naomi is okay. It was a diabetic crisis. I'm sure that she didn't get her insulin in between the vomiting and that caused the problem. They're keeping her for 24 hours for observation but she should be okay.

We now have a plan. Adrienne will start GND today and get another treatment next Saturday. She was throwing up all day yesterday so we want to make sure she has plenty of antiemetics on board. She's down to 94 pounds so they're starting TPN today too. A lot of activity...and she needs a PICC line because she doesn't have enough lines for everything she needs. I don't think this is going to be a fun day.

You won't believe this

Adrienne had a rough night. At around 4:30 am, the tech came to do her daily chest xray. She usually just lays there while a lot of activity goes on around her, usually. This time, she had a full panic attack with hyperventilating and crying, and then the expected low sats. It took quite awhile to get her to calm down and back on the new BiPAP (not a BiPAP but like a BiPAP and I can't remember what it's called now). She's been taking Xanax here and there for the increasing anxiety but now she's going to get it every 6 hours on schedule. One crisis averted but the nurses wanted me to stay all morning. I was able to wash my hair in the sink (missed yesterday) and take a sponge bath. The regular room had a shower but the ICU room doesn't and they wouldn't let me use the staff shower (worried I might fall or something ridiculous like that).

Anyways, we have a trusty housesitter, Naomi, that loves our dogs and takes good care of everything. Having her at the house helps me sleep at night and focus on Adrienne, plus I don't have to leave detailed instructions like I do for Curt :). Around noon today, my neighbor calls saying the dogs have been barking and no one is answering the door. I gave her the combination to the garage and she got in and called me right back. Naomi was blue and it looked like she wasn't breathing so I said to call 911 right away and I came right home. The hospital is about 20-25 minutes from our house so it took me awhile to get back. Apparently Naomi had been vomiting and is a diabetic (I knew about the diabetes but not the vomiting). The paramedics came and took her to the hospital (she was breathing after all) and the dogs are fine, of course. Just some pee by the back door but there was vomit all over one bathroom. I'm almost done with the laundry after cleaning everything up and the dogs are now taking a nap. Karen (thatonegirl) is spending the afternoon with Adrienne until I get back to the hospital and Curt is on his way home, but that will take awhile given the holiday weekend traffic. My neighbor will look after things here until he gets back tonight. When it rains, it pours.

Adrienne is about the same. The docs talked yesterday and will decide today what treatment to give her. Chemo is definitely in the plan. She had a bit of a fever this morning but it was gone by the time I left, around noon. Everyone is doing everything possible for her so we remain hopeful, though this is the hardest thing any of us has ever had to do.

Talked to Dr O

He's so nice, saying to call his cell any time, even at home. He thinks this is all some mix of disease and infection and that, given Adrienne's tenuous respiratory status, Rituxan would be too dangerous. The Rituxan causes a very mild inflammatory response in the lungs of most people and they don't even notice it but it could be fatal for her. Add to that, its too slow in working. I'm trying to get the oncs together by phone either tonight or first thing in the morning to figure out what type of chemo to try. Doing nothing is too dangerous but doing treatment could be equally dangerous. Let's just hope Dr. O can pull off another miracle for her.

PCP Pneumonia?

Apparently, Adrienne's scan shows what looks like PCP pneumonia. This is a serious opportunistic infection that affects people with severely compromised immune systems. This can be difficult to treat but they're trying with everything they"ve got.On the scan, it doesn't look like more lymphoma. The plan now is to treat it for 24 hours and then reevaluate. If she hasn't improved significantly by tomorrow, she'll start the Rituxan. Right now, she's on BIPAP for 4 hours at a time with a break on the 100 percent oxygen mask. She's eating an english muffin right now for breakfast and we might try the hair washing cap later.

Some people have asked why its so hard to figure out what's going on. One thing I've learned over the years is this is how it goes. Things change on a day by day basis and bodies react in different ways. They're doing everything right and she's getting the best care possible. This is just what happens sometimes when the cancer gets more aggressive and widespread.

Back on BiPAP

Adrienne has been more short of breath as the day goes on so she's back on the BiPAP machine. We're going to try 4 hours on and 1 hour off. The CT shows a lot more infiltrate throughout both lungs. The next step will be intubation.

New problem

I mentioned yesterday that they tried to turn down Adrienne's oxygen without success. Her numbers are ok today but she feels more short of breath. This morning's chest xray showed some new abnormalities but it's hard to tell what's going on so she just had a CT scan. We should have results shortly. The doc thinks it's mucous plugs. I'm not sure yet what this means but they want to start a new breathing treatment to try to break them up. I'll post when I know more.

Baby steps

We got a little bit of good news. Adrienne's chest xray was much improved today. Pleural effusions are smaller. Edema is less. Infiltrate looks better. They tried to lower her o2 without success but at least she isn't needing BiPAP anymore. This is a slow process and we aren't out of the woods but at least we had some good news. Adrienne's goal is to get on the nasal cannula, which is the milestone to start rituxan.

Fragile

Adrienne is breathing and resting comfortably, so I decided to come home for a few hours this morning to catch up on work and chores. I thought I knew a lot about this disease but I've learned even more the last 10 days. I'll try to give a more detailed picture of where we're at.

It turns out that as you have more disease, the types of pulmonary complications Adrienne is having are common. The problem is the disease but we can't treat the disease fully until the pulmonary complications are under better control. Since she has had so much treatment, we have few options and what there is often causes more problems than it solves so its a fine balancing act. The hope now is to get the pulmonary issues under control and then try Rituxan to try to shrink the tumors so we can get her onto another trial. Rituxan frequently causes an allergic type reaction and that could be fatal for her, so no one wants to try until her pulmonary status is more stable. She's getting the procarbazine and etoposide daily but these aren't likely to provide significant disease control given the aggressiveness of her disease. Each day, we wait for the chest xray, labs, and her clinical picture to decide what to do. She seems increasingly weak and thin and that is scary for us to watch.

Several people have asked about sending something. You can send to the hospital directly or to the house (please send an e-mail to me at alison95070@yahoo.com for our home address). She can't have fresh flowers or any food. She's eating but on a restrictive diet.

Mentally, things are particularly tough. Things that never bothered her before are creating extreme anxiety, even taking her pills or brushing her teeth. The nurses have been great, giving her as much time as she needs in between things. She doesn't want visitors and won't read the e-mails and comments you all are leaving. Please don't stop writing though. I hope that soon she'll be ready to listen and know how many people love her. Yesterday was the first day she looked at her new iPhone in several days so we're hoping the trend continues. She felt it was okay for me to come home for a few hours this morning.

Again, thank you for your notes and e-mails and phone calls. Sometimes, I feel up to talking and sometimes I just can't. I know you all understand.