Congressional Response

I can't say thank you enough! Congressman Baker, Congressman Jindal and Senator Landrieu you and your staffs have more than earned our trust, and we are forever indebted to you for standing up for Ann's right to live.

I wonder if the CEO of Harolds is aware of these?

Pump it up

Day 86

When ever I hear someone escaped a hospital I always think of Chief from One Flew Over the Cuckoo's Nest throwing the fountain through the hospital window and escaping after suffocating his best friend McMurphy. Ann escaped the hospital today but in nowhere near as dramatic a fashion.

The truth is that she couldn't stand it there anymore this time around. This time around was just too unnerving for both of us to want to stay there any longer. We couldn't actually take her IV pole and pumps out of the hospital but luckily there is a device MDA is now using that allows the patients to do some of their chemo without being in the hospital at all.

It's a portable peristaltic pump manufactured by a company called Gemstar and its pretty neat. It is stored in a small black nylon bag, that looks like a big fanny pack, along with one bag of chemo. A tube runs from the bag through the pump and into Ann's CVC. I think of it like a combination purse and poison dispenser...just kidding.

The drug that we were sent "home" with is the weirdly red Doxorubucin. We have both been cautioned that should we have to open the bag containing the pump and the chemo drug at any time that gloves must be worn. Any contact with skin must immediately washed off and then reported to MDA right away. Nice to know that the drugs that treat cancer also can cause cancer. Maybe that wouldn't be so bad...I think I would prefer to share that fate with Ann rather than be without her.

Anyway I took a picture of this stuff and well my camera phone just doesn't do it justice.

Even though we are back at the apartment round 5 isn't over. The Gemstar is programed to run until Midnight Monday and then I have to drive Ann to the emergency room and have it unhooked. However we might have to go back before that. The pump is twitchy sometimes and will report "air in the line" or that it is "occluded" for no obvious reason and then needs to be restarted.

The nurses at MDA gave me a list of things to do when the pump encounters a problem but most of them involve unhooking the IV line and wasting some of Ann's medicine. So I have quietly filed all of the papers except for the one with the Transfusion Unit and Emergency Room's phone number. If the pump goes off again I'll just call them and they can tell me what they want me to do...it's really just easier for everyone that way around.

Right now Ann is sleeping and I'm going to go and try to figure out what I can make her for diner.

I've debated on whether I would share this, but I feel like I should.
April 5, 2007 is the six year anniversary of my father passing away of cancer. He'd suffered for many years, first from skin cancer and then from lung cancer which eventually metastasized to his hip. I remember the last time I saw him before he had to be taken to the hospital because of the bone cancer.

It was his birthday, almost a month earlier. I had baked him a cake and driven it down from Baton Rouge. The reason this memory stands out in my mind is because I remember watching him force himself to eat a piece. The cancer and treatment for it tends to steal your appetite. I know this first hand. I watched him force himself to eat every bite, and it just had not occurred to me how much effort and determination that it had taken him.

Two weeks later, I got a call from my mom telling me that he was acting disoriented and unwell. He was admitted to the hospital that day. That was the end of it. The doctors started him on chemo, but the cancer was far too gone and they elected to stop. All treatment after that was palliative. He got pain meds to help him through and it got to the point that he didn't recognized anyone.

Since I've been in the hospital for round 5, two of my neighbors have died and one had to be taken to ICU. On my first night here, we ran into a woman in the family lounge who was talking about her daughter. She was not going to make it. I haven't heard anything more about her.

This round of chemo has been harder than the rest. I wonder if it has more to do with everything else going on. My attending physician also happened to be the head of Leukemia. He gave me the option of taking home a pump with the last of my chemo in it. I elected to do it. I'll get hooked up at midnight tonight and the bag will finish at midnight on Sunday. I'll have to come back to the hospital on Monday to have the pump disconnected, but at least I'll get one less day in the hospital.

It feels selfish to do, but I cannot take one more day of sitting in the hospital. I've been more nauseated this time around and the twenty-four hour drip of zofran hasn't helped. I've been getting a phenegran supplement every time the nausea gets too bad for me to deal with. It makes me feel like a zombie and I end up falling asleep for about two hours after the nurse starts the bag.

I'd much rather be curled up on the couch at the apartment miserable, than stuck here. I hope the rest of the weekend is less eventful.

Tina's Surprise and Coming Attractions

Day 85

One of our best friends in the world is a charming woman named Tina. She is steadfast friend who has stood by Ann through past troubles. Today we learned that she has put together a web site to help us. I wish I had a picture of her to post (without a hospital mask on), she has a beautiful smile.

You can visit it at www.annsfight.org.

We have also heard that our friends and family are organizing a blood drive in Baton Rouge on the LSU campus. They are also trying to set it up so that Asians and other Minorities can register to become Marrow Donors. This is really important because right now there is no place in Baton Rouge that even recuirts marrow donors, and so many people need transplants to save their lives! This is tentatively scheduled for mid April, but I will post the exact date when I get it.

More later today...

Midway through Round 5

Day 84

Two more people passed away on the wing that Ann was staying in today. The person on the other side of her and the person next to them. I know that the juxtaposition of those events to us is random, but the closeness of it is still un-nerving.

There are some other events from today to report. For the first time Ann had an accident with her central line catheter (CVC). She asked to take a shower and the patch that was constructed for her failed. This got her tegaderm bandage soaked and water actually managed to get to the hole penetrating into her chest cavity and artery. This could be extremely bad.

Up till now we have avoided any problems with her CVC and the infections that come along with it. Most patients who develop a CVC problem are sidelined for a week or more as the Doctors work on getting the infection under control. Because chemo screws up the patient's immune system, bugs that come in through the CVC line get a free ride right into the heart and can literally attack any part of the body in a few hours or minutes. Some patients die from something as simple as this.

I feel like the accident is my fault. I was talking on the phone, trying to get something done and I didn't check her shower patch made by the nurse closely enough. If I had I would have seen the problem and asked the nurse to make it again or get me some larger tape to fix it. Stupid! Just %&*#@ stupid of me!

This could be part of the reason for the new 875 mg "horse pill" antibiotic that she had to start taking.

We are still getting apologies for the state of the room we had to check into for this round for chemo. I'm happy to report that the problem has been dealt with completely and there is no hint of unpleasant smells anywhere. There has been one unintended side effect to the whole event though. Our charge nurse overheard a Doctor on rounds this morning speculate that Ann would be released Saturday and checked on it. It seems that the time we waited to move into the room delayed her getting her 1st bag of Cytoxin. So that in turn pushed her release back into Sunday night. So it looks like Ann will have to spend Easter Sunday tethered up to a IV pole.

The pathology report on Ann's last Bone Marrow Aspiration still has not come back. We are waiting on pins and needles for it. I know it showed 3% blast cells but the question is "what are those 3%"? Are they Leukemic, or normal?

Ultimately I suppose the answer to that question doesn't matter. The t(4;11)+ form of leukemia that has stricken Ann has been studied enough even though it is rare, for the Doctors to be almost 100% certain that there is a single Leukemia cell lurking somewhere in my beloved Wife silently learning how to avoid being killed by the drugs being pumped into her. Leukemia is a cancer of the human immune system and the immune system is after all adaptive. As soon as that single cell figures out how to survive the chemo drugs then the problem will simply begin all over again. But worse now the drugs will be an ineffective tool at keeping the monster at bay.

I wanted to answer a comment someone made on to a previous post. The owner of the New York Bagel Co. on Jefferson Hwy in Baton Rouge is a good friend by the name of Ann Tran. Ann Tran has kindly offered to promote our cause and run some specials in her store to help us. She is a very kind and generous woman, who runs a wonderful business. If you have time and are near Jefferson Hwy in south Baton Rouge, please stop in and visit the New York Bagel Co. you won't be sorry.

Finally we have had some interest from another TV station on a different angle on Ann's story. I'll keep everyone posted on this. Also the channel 2 story looks like it will run very soon.

Anyone know how to get in touch with Oprah?

Moment of Silence Please

Day 83

The patient in the room next to Ann passed away today.

It's easy to forget when you walk through MD Anderson that this happens. The smooth glossy surface of the hospital is a veneer that masks and subdues more basic human fears. They are still there lurking beneath the surface of perception. Invisible until confronted.

He had ALL just like Ann and although I don't know who he was, his passing leaves me evermore fearful for Ann's morality.

I hope he didn't suffer.

Urine Luck

First, I really hope Tommy Chong doesn't sue me for the title.
Second, I just thought it was appropriate considering what this posting is going to be about.
;)

Yesterday started out at 5AM and we knew it would be an extremely long day. I had lab and immediately after that I had a bone marrow aspiration immediately after that. I keep forgetting not to lean on the left side when I sit, but it's easier said than done. Immediately following that appointment, I had one with my new transplant doctor. Personality wise, he is on the opposite end of the spectrum from my original transplant doctor. He's got a demure demeanor and is rather soft spoken. I like him and appreciate that he forces you to ask questions. After this appointment, we had to hoof it back to see my Leukemia doctor. If you think that any of my appointments were on time, you'd be sorry. I was 1hour-30minutes late for my last appointment. We were told to go get lunch and come back at 2pm. So, we ended up having to do something else and ended up getting back to the Leukemia clinic around 2:30 PM. Shame on us, we made a doctor wait.
Here's the skinny on what we found out. My blood counts were good. They were almost normal, which would explain why I was able to walk half a mile without falling to pieces. My BMA came back good. I had 3% blasts, which is normal. This is a preliminary reading. We're waiting for the pathology report.
We had another interview with WBRZ, today. As always, it was a pleasure. We'll keep everyone posted on when the story will run.

I'm sure most of you are wondering about the title, so I won't keep you in suspense anymore. I was readmitted into the hospital for round 5 of chemotherapy (Yippee!). We were told that the hospital was completely full and running in diversionary mode. I suppose this meant that they weren't taking any more patients for in patient treatment. I was all for that and had visions of going back to the apartment to veg out with my knitting. Oh, what a sad fantasy that turned out to be. I was one of the lucky few to snag the last available room (again, Yippee! with shades of Ben Stein). I'm housed on the tenth floor, which is the leukemia floor. As most of you will recall, I was here once before, but in the opposite wing. When Chris and I reached our room it was just after 5 PM. We dropped our bags and started checking out the layout when Chris asked me if I smelled something. I was wearing a mask, so it took me a minute but I did indeed smell something. I wasn't in a hospital room. I was standing in a men's urinal at the height of Mardi Gras, and we are not talking about in a bathroom at a 5 star establishment. We're talking about that shady gas station where the restroom key is tied to a shard of concrete block found in the parking lot. As an aside, who would knowingly steal the key to the bathroom of one of these places. Are your standards of hygiene so low that you would want carte blanche in one of these places. You have to use your foot to flush the toilet to avoid actually touching the commode handle with bare skin, if you actually cared about such a thing.
We immediately walked out and informed my nurse. She got the charge nurse involved and it all went on from there. After several phone calls, one of which was to the hospital administrator, who kept asking if there really was an unbearable odor, the room was cleaned twice more. After cleaning number three, we were asked to come back in and evaluate the smell. At first, you could only smell cleaning solvent, so it was on the tip of my tongue to accept the room when the smell of urine came back with a vengeance. We walked back out and waited for some other solution to be found.
In the meantime, I asked if we could leave and be readmitted in the morning. The charge nurse called my leukemia doctor at home who was paraphrased as saying, "Under no circumstances was I to leave." It seems that my chemo drugs had been mixed and were ready to go. By this time, the hospital administrator came up to investigate the smell herself. Once she caught a whiff she got building services up here to do something. They replaced the shower curtain and checked the drains, etc. Still, there was a distinct smell in the entire room. House keeping came back and cleaned twice more with a different set of chemicals and they left industrial strength room deodorizers. Last night, the room smelled like synthetic oranges--chemical makers will never get this right in my lifetime.

At the moment, there is the slight scent of urine. I'm sure it's not my imagination. I only worry that the people who come into my room think the smell is coming from me. I know I have bigger things to worry about, but who wants to smell like eau de pee-pee? I wonder if I should just bring up the smell to throw suspicion off of me, but that tactic always seems to make you seem even more suspicious.

I've been promised a room change when one becomes available. I don't think that it's going to happen since they've already roped me into the fragrant room. As a hospital employee, I wouldn't want to have to deal with the next patient complaining after I'd already dealt with it once.

To add fuel to the fire, I'm retaining fluids again, so I've been given lasix. This is only adding to the urine rumors. I will forever be remembered as "that girl" to the tenth floor staff. It's like being a Charlie Brown character. Watch out Pigpen!

On a personal note--no urine anecdotes involved:

Amy, you have to love Christopher. He's got such a great sense of humor. Definitely your child.

Mabyn, if anyone saw me in a backless gown right now, they'd think they were seeing a science experiment going horribly wrong. My back would have more creases than an accordion and I'd look like I was smuggling volleyballs from the front. You and I both know that I am smuggling volleyballs to the Backyard Sports Underground, but that's just between us. :)~

I had a visit from the attending physician this morning and he said that I'm doing very well. He did comment that I'm having opposite reactions to my chemo protocol than most other patients. It seems that other patients become nauseated during the even rounds and they do better on the odd rounds. I get nauseated on the odd rounds and had supporting physical evidence last night. If everything goes as history suggests, I'll have a present for the nurse every night between 8pm and midnight. The vomiting usually stops within a day of getting back to the apartment. I think the mesna has a lot to do with it. Here's an interesting fact that I only just found out. I get drugs to help with my nausea and for the entirety of my treatment, I thought that they worked to calm my stomach. Turns out, anti-emetics work on your nervous system. Stopping vomiting has more to do with your brain. Crazy.

Enough of the delightful workings of my gastrointestinal tract. I could continue to rhapsodize about my inner workings, but I'll spare you for now. Chris is off campaigning to keep me around for a while more and I think I'll have a nap. As soon as we get some good news, we'll post it. I also want to apologize for not having the fun thing done. The build up has been ridiculous, and I know that when you see it now, you'll think, "All of this for that?". These past few days have been so hectic, that when we get to the place with the fun stuff, it's closed.

Everyone take care.