Sunday, April 29, 2007

Friday, April 27, 2007

Changing Appointments

Day 106

The pace is definitely picking up. Our schedule at MDA has been quickly filled by several appointments with the stem cell clinic. Monday we have to go and sign the papers agreeing to the transplant. Then later in the week we have Doctor's appointments and classes on the procedure.

Next Monday Ann has to go in to have her CVC line replaced with a different larger one. Apparently the double line CVC she currently has is OK to use for leukemia patients, but not for transplant patients. Then later she will go in for apheresis, where they attempt to harvest her own stem cells for use in case there is a problem with the ones from the cords engrafting.

So it is official Ann is becoming a stem cell transplant patient. We are drawing to close the phase of her treatment where her disease was simply being managed, to one where there is a real hope for a cure.

I can't begin to tell everyone how excited and scared at the same time, we are.

Thursday, April 26, 2007

Do a little dance

Day 105

It was a dark and stormy night...the air hung over the concrete like a cat on a hot tin roof...
Ok, here's my favorite mixed metaphor/cliche: The dominoes are falling like a house of cards, checkmate. Thank you Zapp Branigan. Period Dot Bingo!

Enough of the silliness. Chris and I spent the entire day at the hospital running in and out of appointments. I saw Dr. Thomas and we talked about the distended stomach a bit more. She said that it would be a few days before things started to look normal again. I really can't wait. I've gained ten pounds since Tuesday, which is disturbing, because it puts me at 69 kilograms. When I joked with Dr. Thomas that I was really retaining fluid, she said it was a little of that and a bit of being full of pooh. I laughed for five minutes until I started crying. She thought it was pretty funny too. The good news is that Chris refilled the prescription on the laxative. Hurray.

Well, I got admitted for round six. I had the choice of going in today or tomorrow. So, we picked today. It took forever for my hospital admissions papers to come in, so we went to get my CVC dressing changed. With admission papers in hand, we waited to have my dressing changed when a very funny thing happened. I got a phone call from my transplant doctor. He asked me to hold off on going to the admissions desk while he called to talk to my leukemia doctor. Strange. Even stranger still is that I'm not in the hospital doing round six right now. Dr. Alousi got the formal approval for my CBT including reasonable prescriptions and the business office gave the go ahead. So, Dr. Alousi talked to Dr. Thomas and talked her out of my doing more chemo. Yippee!

I start testing next week for the CBT and we take it from there. They've started scheduling me for various appointments, so next week will be tremendously busy. Chris is so relieved he doesn't know what to do with himself. I can't believe that it's actually happening. I'm hoping if all goes well, that we should move to transplant in three weeks. I can't wait. I know it sounds a little crazy, but it's a bit like the best Christmas ever. I don't care if I get another thing in my life, I just want a chance to do good and help other people who might be going through this very same thing.

So, here we are. Nothing on the agenda tomorrow, but we'll blog if anything happens.

Wednesday, April 25, 2007

Saline Away

Day 104

I'm really sorry that I've been out of touch for the last few days. I've been feeling really unlike myself for the last five days, as I'm sure you've figured out from the last few posts Chris has made. Well, my transplant doctor ordered x-rays to figure out what was going on with my gastrointestinal system. Absolutely nothing on the films. They said I was normal and that my problem was that the chemo had essentially stopped my peristaltem. The prescription they wrote me did the trick after six doses. It tastes like corn syrup and looks like Drano. Yummy. I keep asking Chris if he'd like to try some, but he's declined so far. I have one dose left, so I'll keep after him.

Enough about my tummy trouble. I have appointments tomorrow with my leukemia doctor, which means that I'll be going in for round six. I'm worried about the Cyterabin, since last time they started me on eye drops early to stop the eye problems I had before. I think in the confusion of the transplant, they forgot about the Cyterabin toxicity. I'll bring it up in the hospital and see what happens.

We went to the hospital tonight to get my pump disconnected. I was really looking forward to it, since the backpack is heavy considering the size of the saline bag I had to carry around. In addition to that, I have to be careful about how I handle it, since it's connected to my CVC. I had to sleep with the backpack perched on my pillow last night. Every time I woke up, I had to be sure that I didn't pull on the line coming from it. So, we were in a little room waiting for the nurse to come in and disconnect me. She came in with another huge bag of saline and a new pump. It turns out that Dr. Thomas had ordered a 48 hour prescription. I'm still connected and the backpack is perched next to me as I type. I can say that I am thoroughly hydrated. In fact, I've gained six pound since yesterday thanks to the infusion.

I wish I had more to report, but Chris and I are essentially in the dark about what's happening. I heard that I'm quite the legend in the transplant presentations. I'm sure that has more to do with Chris' relentless campaigning, than with me. A woman that works for the transplant center flew out into the hall yesterday while Chris and I were walking by. Before I knew it, she had wrapped me in an enormous bear hug and told me that she had presented my case to the transplant doctors four times. Chris had met her once before, so he wasn't surprised. It's strange, but people aren't shy about hugging you when you have cancer. When I'm introduced to people at MDA, I always reach out to shake hands, but people always grab me for a hug. Chris gets a handshake. I wonder what they're thinking. I don't mind the hugs, in fact I love hugs, it's just that it's strange how people just assume that you don't mind you're personal space being invaded.

Chris is also quite the legend. The head of transplants actually contacted him and asked for all of the letters that he had compiled from transplant doctors across the country. They're going to put them into a packet to help other patients that may find themselves in the same position we were in. He's done something amazing.

So we're infamous. Now I can start knocking over banks. Imagine it, sans eyebrows and eyelashes with a surgical mask and cap. No DNA evidence. It would be the perfect crime. Chris could drive the getaway car.

Or, we could just hang out in the apartment and watch movie rentals. Stay away from Smoking Aces. Horrible. Horrible. I felt like I needed to scrub my eyeballs after that one. The Last King of Scotland was intriguing, though.

We'll let everyone know what's going on as soon as we find out tomorrow. Good night.

Tuesday, April 24, 2007

Tummy Trouble

Day 103

Hello everyone, it has been an eventful day today. First things first...I know everyone is waiting to find out exactly what is going on with the transplant so here is the latest. Officially MDA has called the cord bank(s?) to reserve Ann's cords.

The cords that they have chosen are two HLA 5/6 (5 out of 6) matches. They have been described as "big" though I don't know what that means relative to umbilical cords, I do know that larger cords are more likely to yield more stem cells. The more stem cells that are selected, the faster the engraftment of the new immune system. The faster the engraftment the less chance there is for random bugs to find there way into Ann's body and attack it. MDA is looking for approximately 3.5 x10(7) Cells/Kg of body weight. Again they feel like because Ann is small and the cords are "large" this will not be a problem.

We did find out that the Transplant Doctors and Ann's Leukemia Doctor feel like it will be beneficial for Ann to go through round 6 (which is short). The thinking is that the t(4;11) translocation is dangerous enough, and Ann has not suffered any major damage to her organs, or serious infections, that it would be wise to go ahead. Another factor is that the even rounds are mainly Cytarabine (aka ARA-C) which Ann has a pretty extreme reaction too (it blinded her in round 2). So they want to give the Cytarabine an extra chance to kill of any more lurking blast cells. This may also help to make the radiation given ahead of the CBT more effective, which would reduce any chance for a relapse after the transplant.

Timing wise the transplant looks like it will happen sometime in the Middle or Late Middle of May. Unfortunately we can't be more specific than that right now because there are too many variables still unknown.

On to the subject of the post. When we last left Ann she was having digestion problems. Well they got worse. The good news is that its not Splenomegaly. It it were her WBC counts would be off the charts again and they are not. In fact they are almost normal.

The bad news is that all the antibiotics and chemo have slowed down Ann's digestive system to a slow crawl. So she is FOS (full of Stool) which might sound funny, but it's pretty painful for her to even sit up or walk at a normal pace.

After seeing Dr. Thomas, Ann was placed on Renagel, Enulose, Senakot and industrial strength Milk of Magnesia. Plus to make sure she stays hydrated we had to again pick up one of those Gemstar portable pumps with a liter of Saline set to infuse over 24 hours.

The bag of saline and pump set up this time is so big that Ann has to wear it like a back-pack. As convenient as taking one of these home versus doing the infusion at MDA is, it presents a real risk to Ann's CVC.

The CVC is held in place with three sutures and the weight of the pack, pump and saline could easily rip it right out of her chest if it fell. So I will have to find a place to really secure it while she sleeps, and do so in such a way as to give her IV line enough slack so that she won't pull it out if she rolls over.

It has been a long day for both of us, so this is where I'm ending today's update.

Good night everybody.

Monday, April 23, 2007

Holding Pattern

Day 102

I would like to start by saying a belated but heartfelt thank yous to Shannon McIvor and all the Scotch Guard volunteers, Sandy Bailey and Claudia Hawkins and other volunteers in the engineering department who made flyers, posted flyers, blew up balloons, and provided extension cords when the blood pressure machine went down and the engineering grad student that generously made copies for the tech team. We keep hearing about everything everyone did at the Blood Drive and can't say thank you enough. You guys did awesome!

Sorry we missed an update, but yesterday was exceptionally uneventful. The highlight of the day was me going to blockbuster to rent The Devil Wears Prada for Ann to kill the boredom. Well that and laundry, but I suspect that the majority of people who read this blog don't do so to read about adventures in domestic house work.

Today one new and not so welcome thing has developed. Ann has begun to get a very swollen stomach, which freaked me out at first because it was one of her first symptoms (Splenomegaly - swollen, enlarged spleen). It got so bad just before she was diagnosed that the her spleen actually compressed her stomach between it and her ribs. It drastically reduced the amount of food she could eat, to the point which a mouthful or two would make her feel like she had seconds at Thanksgiving.

So this latest "new" swelling has alarmed me. Splenomegaly was one of the first symptoms she had so it stands to reason that it might be one of the first to return on a relapse. Tomorrow when we go to MDA for appointments we'll ask about seeing a gastroenterologist, but I'm pretty sure I have figured out the cause. he cells on the inner lining of her stomach and intestine are very susceptible to chemo, so I believe that she is having problems digesting food. I tried Milk of Magnesia, Fiber Supplements (powdered and solid) and finally Ice Cream (Ann is lactose intolerant) before Ann got some relief.

Tomorrow we have our first meeting with the transplant Doctor since the approval. We are of course anxious to hear is Ann can go into transplant soon. The preparations for that will take some time, plus the stem cell clinic has to work out a timetable with the leukemia clinic which has Ann on a 21 day cycle for chemo. Tomorrow would be day 21 and theoretically the start of round 6. Will they let Ann slide a few days and go into transplant or will they make her go through round 6?

Considering that they have only known for a week that she was approved, the earliest they could do a transplant would be the April 30th. If we have to wait until round 6 is over then the soonest they could do it would be May 15th (give or take). Of course a lot of this depends on where the cords come from. If they come from the US they could be here very soon. However, if they come from Taiwan, Vietnam, China or Hong Kong (all have large cord banking programs) then it could take a few days longer. I should point out that MDA knows exactly where the cords are coming from, but because of confidentiality laws/rules Ann and I don't get to.

We will let everyone know tomorrow whats going on. Night everyone.

Saturday, April 21, 2007

Century

Day 100
One hundred days have passed since we left out home in a panic, terrified of what the future would hold. I know that the number 100 hundred is a meaningless measure of time that is only imparted with significance by humans attempting to give tangible measure to an abstract mental concept. Can you imagine what a hundred of anything looks like? No. Two, Four, a Dozen maybe two, but after you get above that we begin to loose the ability to imagine them concretely and they begin to run together. That's what this journey is like.
I'm hoping that with the recent approval of the transplant we will begin to change that Tuesday. Once we have the a firm date for the transplant that will mark the half-way point of Ann's fight to live. The point at which we move from treatment that will just manage her disease temporarily, to one that can really cure her and let her recover her life. As you can expect we are looking forward to Tuesday and this second phase of our time here in Houston and MDA with great anticipation.
Ann has recognized that her physical condition has deteriorated considerably since she entered treatment and is likely to do so even more with the CBT. So she has started taking walks in the afternoon. Her skin is very sensitive to light so, in the afternoon when the sun is going down and there are not many people around, we have been walking about a half a mile around the parking lot. The parking lot is a two story structure with a ramp, so Ann tries to walk up and down the ramp at least twice. Its not much but the effort leaves her perspiring and out of breath. Happily, though it seems to be getting easier for her to do each time.
I would like to take a moment to say thank you to Ronald Adams of Ronald Adams Construction. Your gift to Ann's medical fund was an extremely generous gesture and I am deeply honored that you would take the time to help us. It has been my distinct pleasure over the past several years to have the opportunity to work with you and hope I can repay your kindness one day. Thank you for helping me save my Wife's life.
Thats all for tonight.

Friday, April 20, 2007

Day 99

THANK YOU! THANK YOU! THANK YOU!

I will never be able to say it enough. It's humbling and amazing to know that so many people would take time out of their day to do something so wonderful. I especially want to thank all of the students and faculty who came out to donate blood and platelets and register their bone marrow. There are so many people in need and you've all done something so selfless. Somewhere out there, someone is getting a second chance because of what you've done.

Huge thank you to: Dixie, Susann, Paige, Jimmy, Ronald, Mary Le Seur, Clark Barton, and Christopher Tarver, the blood tech team, and all of the volunteers who gave of themselves to make this possible. I honestly don't believe that I would have made it this far without so many wonderful people willing to give of themselves.

I am absolutely humbled by the sheer number of people that turned out today. I don't want to forget the Construction Management Department, CSA, the College of Engineering, the Business School. I hope that I haven't forgotten anyone and if I have, I am so very sorry. I am just overwhelmed with gratitude.

Chris and I have started a countdown to Tuesday. We have an appointment with my transplant doctor in the morning. We should find out what our time frame for transplant will be. Unfortunately, we also have an appointment with my leukemia doctor right after. I love Dr. Thomas, but I'm worried about what she's going to tell me.

I have three courses of chemotherapy treatments left on my Hyper-CVAD protocol. The treatments are spaced out a maximum of twenty-one days. I usually go in a little early because I've been able to tolerate everything so well. I saw Dr. Thomas on Thursday and she wants me back on Tuesday to assess how I'm doing. If my infection is under control, she wants me to go into the hospital for round six. This may or may not happen depending on what my transplant doctor says.

If I have to go into the hospital for round six, I will have to wait a minimum of twenty-one days before I can start conditioning for my transplant. This will set me back considerably, and Chris and I are anxious about it. We both want to move forward and get it all done. I know all of my doctors just want what's best for me, but I want to go home.

If we hear anything this weekend, we'll post ASAP. I doubt that we'll know anything until Tuesday, though. Keep your fingers crossed.

Thursday, April 19, 2007

Blood and Marrow Drive Tomorrow

Tomorrow a Blood and Marrow Drive will be held at Room 101 of the Construction Management Building next to the CEBA Building, on the LSU Campus from 9AM to 4PM.

Every pint of blood donated will go towards treating patients at M. D. Anderson. There are lots of people suffering from blood cancers just like Ann, and they can use every ounce of help you can give them. Some patients need as many as 10 or 15 transfusions a month while they are being treated with chemotherapy.

There are 35,000 more people every year diagnosed with diseases that can only be treated by a bone marrow transplant. 10 people will die each day due to a hematological cancer that could have been treated if they had found a donor. The people most effected by this are minorities who make up only about 20% of all available donors.


You can help save someones life.


If you are Asian, Mixed or a Minority please come by and get marrow typed. All it takes is a swab of your cheek and the time it takes to fill out a form. That small effort can give one of the thousands of people needlessly suffering a second chance at a beautiful life.

Please help.



Update


The CEBA building is located off of the Nicholson Extension on the LSU Campus.

The cross hairs in this picture are centered on CEBA (the large figure 8 shaped building), the Construction Management building is located just to the right.

Wig of the Month

Day 98

Today we are back for the usual routine of blood tests and Doctors visits at MDA. Some of the technicians that we have seen over the past 98 days have gotten a bit more familiar with us, and we have managed to coax a few of them into having their picture taken.

This lady is the phlebotomist (person who collects blood samples). She is from Ethiopia and is very sweet and nice. She always manages to be perky, which is hard to do considering the number of patients she as to draw blood from in the early morning. It's not unusual for her to have 40 to 50 patients lined up waiting to get stuck or give a blood sample. In the picture you can also see her pulling blood from Ann's CVC.

After giving blood the next stop is to have your vitals taken. They do this so often at MDA I'm surprised that they just don't take your vitals automatically when you enter the building. The person who is in charge of this at the leukemia clinic is Miss Nancy. She is a native of Crowley and just lit up when she found out we where from Louisiana too. Ann has promised her we will cook Coq Au Vin with egg noodles for her as soon as we get some free time and Ann is allowed to handle food again. Miss Nancy is always interested in talking or telling a story. She is passionate about the patients she sees and treats them all like family.

After vitals its on to see Dr. Thomas' nurse, Miriam. She goes over the routine information and gets all of Ann's information straight. You can't tell in this photo but she was nervous about getting her picture taken. I think she is kinda shy in person.

Normally after Miriam sees us we wait for a bit and see one of the leukemia department's PAs Lori, Lizzy, Rodney or Tiffany. Ann's favorite is Lori. Lori did stop in for an "informal" visit to and to congratulate us on moving on to transplant. She is the the most professional and attentive PA at MDA hands down. Thats not to say that there are bad ones, just that Lori really does shine in her job.

She is always smiling and really sets Ann at ease. For example Lori did Ann's first lumbar puncture and she was pretty freaked out about it until Lori talked to her and set her at ease.

After our clinic visit we had a few more things to take care of at MDA. In the process we ran into more than a few people, both patients and staff, who saw our stories on KHOU 11. The picture to the left is of a fellow leukemia patient who recognized us.

It turns out that she has AML and has just recently relapsed. Her circumstances are similar to Ann's in that she has no adult donor and will have to have a double cord blood transplant too. If things turn out correctly then Ann and her will be going to transplant at the same time. I knew that there were more people like Ann whose genetics was rare enough that they absolutely had to use cord blood because they didn't have any other choice, but it was a startling experience to meet one. All I can say is that it's humbling to see that your problems are not as unique as you once imagined they were.

Considering all the stress that we have been under Ann wanted to blow of a little steam today and do something that we thought everyone would get a kick out of. Keep in mind that a cancer hospital is never the funnest or happiest place in the world, so our options are extremely limited.

So we came up with the idea of doing a little thing we call "Wig of the Month". MDA has a beauty shop with a vast collection of wigs that run the gambit for everything from Tina Turner to Rick James, and normal ones too. Ann picked out one she thought looked "plausible", although I was pushing for the Tina Turner "Private Dancer" one, and well... tada!

Wednesday, April 18, 2007

Trip to the Dermatologist

Day 97

HOORAY! HOORAY! HOORAY!
I got up and almost did a little dance, but thought better of it, because I'd be the one to fall down and break something. It has been an amazing few days and we're still absorbing all of it. It's funny but it's still business as usual at MDAnderson. We were at doctor's appointments all day today.


I didn't know this before I started treatment, but after you undergo chemotherapy, there is a very increased likelihood that you will develop a secondary cancer later in life. I discovered that the secondary cancer for breast cancer is leukemia and we've met quite a few women in the clinic that have been afflicted.
It's really not fair that these women have suffered so much already and now they have to deal with this. Since I started treatment I've developed quite a few new freckles and moles and when I talked to Dr. Thomas about it, she set me up with the dermatologist. It seems that my secondary cancer might be skin cancer. The dermatologist thoroughly checked me over and the verdict was good. I was checked over by two dermatologists and a med student and everyone concurred that all was well and that I could expect a few more moles and freckles. Aparently, this happens alot in your thirties as a result of all the sun exposure you got as a kid. Kids, wear sunblock. I'm not kidding. Those weird creases you see in some people's necks--sun damage.

The second appointment also came up with a benign prognosis. It never felt so good to be average. I love to hear no problem these days.

Chris and I are beside ourselves with everything that's going on. Chris used to spend all day on the phone tracking down people who could help and coordinating things at home. Now we have free time and don't know what to do. I can't lie, it feels good to have nothing to do.

I have decided that I need to start excercising and have convinced Chris to take me walking. We do laps in the parking lot to help me build up my stamina. We couldn't go walking yesterday, because it rained all day. So, we decided to make up for it by walking the skybridge at MDA. We managed to do three-quarters of a mile before I got spaghetti legs and had to give in. My alterior motive is that I have to keep my weight down. Since I've started taking certain medications, including steroids, my weight has been all over the place. I have to stay under 68 kilograms. I'm just barely making it these days. I've started modifying my diet and have added the walking. It's hard when you're not as active as you used to be. I promise to become one of those annoying healthy people after this is all over. I just need to make it to the other side.
We have leukemia clinic tomorrow and then I think we're free for the weekend. The post will probably be late tomorrow. I'm sorry about that. But, on the upside, I'm getting my transplant! :)

Tuesday, April 17, 2007

Transplant Approved

Day 96

Today we received word that Harolds approved Ann's transplant. Written confirmation is in the hands of MDA right now, and they have already begun the process of contacting the Umbilical Cord Banks to get those two precious cyrogenically frozen life lines that Ann's existence hangs by.

So many people have helped us get to this point, I'm not sure I know how to say Thank You to such a large group of people but I will try. Without your caring, dedication and perseverance we would still be struggling. The fact that we have had your support has sustained us.

Tina: You are a true friend like no other I have have ever met.

Paige: You are an amazing person, and it says alot about you that you would reach out to two strangers.

The Facebook Group: You guys rock!

Ann: You didn't have to do what you did, and we are grateful.

Matt: We owe you a big bottle of the "green" stuff.

Van: You are going to be an amazing attorney, you're already an amazing person.

Georg and Leal: We really don't know what to say, you both made alot of this possible and we really look forward to thanking you in person.

Nancy: Without your experiences to draw on and relentlessly positive attitude we would have been lost.

Susann: Your tenacity helped get us through. Fred is really blessed to have you.

Mabyn: Everyone needs a friend like you. Your sense of humor really helped on the bad days.

Dr. Wanda: Thank you for taking this on in addition to everything else you have to do.

Rebbecca: You are a dedicated, persistent and compassionate person like no other. We can't say thank you enough for looking into our case.

Rhonda: There should be more people serving the public like you. You help make the world a better place.

Jamie: You're a ball of fire and we wouldn't have you any other way. Thank you for everything.

To everyone who has donated to Ann's medical fund: Thank you. The money will go toward the portion of the transplant that the insurance is not going to cover. Your generosity has given Ann a chance at a cure.

To anyone we may have forgotten: Forgive us. We give you the right to call us and harangue us mercilessly.

Harolds: Thank you for doing the right thing.

Ann and I couldn't have done it with out any you.



Monday, April 16, 2007

Free at Last

Day 95

Freedom! Ann finally got the go ahead to leave the confines of the hospital this morning at about 9AM. However due to holdups with the pharmacy and patient transportation we actually didn't get to leave until 2PM.

Thanks to the kaput transformer at the apartment complex, I got a much closer view of what Ann has to go through while in the hospital. The room we stayed in had a murphy bed and to avoid lack of hot water and power I slept on it almost every night. Every two or three hours a nurse would come in and have to take her temperature or strap on a blood pressure cuff. Thats bad enough but the peristaltic pumps that they use for the IV rigs have alarms on them that make you think the room has suddenly been filled with a troop of angry howler monkeys! And they seem to go off for just about any reason at all, including just looking over in the direction of the IV pole, or wondering aloud if "is the pump is working?", breathing, or my favorite...sleeping. The pump's sensors and control system can actual detect the moment that a human begins to fall asleep. At that point it sets its alarm volume to maximum and starts blaring like a klaxon. Of course I'm being sarcastic, but after it happens to you more than three times you begin to wonder if it really is just a coincidence after all or not.

Ann would like everyone to know that her eyebrows have finally started to fall out completely. She is thinking that this will put her at a disadvantage when she needs to make a facial expression, like say anger for example. So she has come up with a novel solution...

I'm not sure I support it but I suppose that if she wants to have a "Burt" eyebrow we have two options. 1) we can draw it in with a sharpie or 2) she could knit one and we could fasten it in place with two sided tape.

Speaking of Ann's knitting she really has been getting quite good. I'm surprised because she has been suffering from advancing neuropathy in her fingers and hands ever since she started chemo. Each additional round has increased the nerve damage in her hands to the point that she can't really feel from her finger tips right down to 2/3rds of the way down her palms. Dr. Thomas says that this might go away with time. Operative word being "might". it also "might" be something that she has to live the rest of her life with.

Mainly Ann's knitting has been scarfs for her friends in the cold wilds of New York City. This one for example is made of what I am told is called "eyelash yarn", but she thinks it looks like someone killed and skinned a Muppet. This scarf for example looks like its make of Cookie Monster fur.

Ann is constantly complaining about how difficult it is to work with and frequently has to stop her projects and start them all over again when she discovers that somewhere along the way she dropped a few stitches. She has much, much more patience with it that I think I ever could.

On a more technical/medical front today Ann's WBC count, RBC count and Platelet counts all started to come up on there own. The RBC count of 3.64 K/uL is more than likely inflated by a infusion of two blood units from two days ago. But the platelets had increased by 10 K/uL on their own, which seems to be pretty good. The WBCs had increased by 1.2 K/uL over the same two day period. Thats a relief because if they had remained suppressed while the urinary tract infection was present it could have easily started to spread. In a worse case scenario the infection could have spread to her blood stream and without WBCs to combat it her blood could have become septic.

One last thing I wanted to close with. The room we stayed in was for some reason unbearably cold for me and I had trouble falling asleep. Mainly because the room's vent pointed directly at the murphy bed, and the covers that MDA gives you are just not all that insulating. The problem was compounded with the unseasonably cold weather Houston has been having. So yesterday night I was freezing my hinney off and I wadded my self up as well as I could to keep warm.

Ann must have seen me because, she got up out of bed, unplugged her IV pole and pump, and as quietly as she could draped her robe over me to try to keep me warm. She thought I was already asleep and I didn't want to spoil her gesture. As watched her make her way awkwardly back to bed, being careful not to trip on her IV pole or catch her tubes, I thought "what have I done to deserve this wonderful person in my life"? It amazes me that even with all she is suffering through, she loves me enough that express it in the simplest and most meaningful ways.

Sunday, April 15, 2007

One more day

Day 94

I'll be staying in the hospital one more day. My blood cultures remained uncultured after 72 hours, so definitely no infection there. The culprit was revealed this morning and I have to admit that I was surprised. I'm sure my reaction is the reason for the stunned looks on the doctors' faces. I had a urinary tract infection. No symptoms what so ever. The doctors kept asking me if I had noticed anything and I honestly had to say no. I have been held hostage for five days because of a crazy bacteria colony that I wasn't even aware of. I am thankful that I presented a fever, otherwise, Chris and I wouldn't have known.

Now that the doctors know what to treat, they've discontinued some of the antibiotics and started me on others. I shouldn't complain, because the nurses and the staff are wonderful and they make sure that I'm constantly checked on.

Chris is at the apartment cleaning out all of the ruined food and making sure that things are aired out. I honestly think that I'd be dead without him. He has taken charge of everything and I know that he won't give up no matter what. I know I'm lucky to have him and I thank God every morning.

Dixie's been holding down the fort in Baton Rouge. She's our lifeline and we wouldn't be able to do what we're doing here without her. She's sold our house for us and we're just waiting on the contract. I do have to mention one funny thing about the house being shown. Everytime that we got an offer the buyer would specify that they wanted our pot rack to remain. Seriously. I couldn't even tell you what the pot rack looks like right now. I know Chris got it at Bed Bath and Beyond and I came home from work one day to find him screwing it to the wall. It's a pot rack, people. I think it's still in production. I started cracking up the second time we got an offer that included it. Now we have to find a company to pack up our house and a storage facility to store it all at. I'm just grateful to have family and friends that care. All of the rest of it is just static.

Saturday, April 14, 2007

Friday, April 13, 2007

Transformers

I finally chased Chris off around 4AM to go get some sleep. I managed to sleep until 7AM when a small breakfast tray was delivered to my ER room. Everything was quiet in the ER because all the rooms were full of patients waiting for hospital rooms. I was told that there were over thirty people waiting out in the hall for triage. The hospital is running over capacity right now. I got into my special room around 6PM. The bathroom still retains that pervasive odor of musk. I sincerely hope they successfully treated the guy that started the odor controversy.

The nurses refuse to commit to how long I'll have to stay in the hospital. I keep hearing three or four days. I don't think that they can justify keeping me in for three or four days when my temperature has been consistently regular all day. My blood cultures showed now evidence of infection this morning, so they decided to let them continue to cultivate. If they're still clear in the morning, I can't imagine that I have a blood infection. My lungs were clear according to the attending physician this morning. I am neutropenic, but I'm always neutropenic after chemotherapy.

Chris reported some excitement at the apartment this morning. A transformer exploded, causing half of the complex to be without power. Our apartment was amongst that half. Normally, we wouldn't worry about it, but we have two months worth of Neupogen that has to be kept refrigerated. This drug is extremely expensive and I'm sure the insurance company wouldn't spring for the replacement. The complex management was nice enough to find a functioning refrigerator to keep it in until the problem is resolved. Thank God for nice people. As of this evening, the power was still out. Chris will have to go grocery shopping to replace everything in the fridge and freezer. I imagine the apartment will smell worse than this room did. Karma is a very strange thing.

I just got what should have been my outpatient chemotherapy. I'm also on my sixth bag of antibiotics. I can't imagine any little phages surviving this treatment. The steroids that I should have taken with the vincristine have been postponed. The doctor is worried about them suppressing my immune system further. The things you have to do to get well. My nurse just came in to hook up another bag of antibiotics. I think I'll leave it on that note.

ER Video Part 2

Day 92

Thursday, April 12, 2007

ER Video




Update

We just got word Ann will be admitted to the hospital this morning and will have to stay there until they find the cause of the fever and eliminate it.

This is less than welcome news all around. Ann's last stay in the hospital was rotten, considering the people who passed away or were taken to ICU. So now with only a day or two out she has to head right back in.

We have sat in the ER for the better part of 5 hours, and we can expect to wait another 3 or 4 before a room is ready.

We have seen enough of the inside of MDA to last a thousand lifetimes. What do we need to do to get our lives back?

Emergency

Day 91

Today is the day that I have been hoping and praying would not arrive. I had to rush Ann to the emergency room tonight because her temperature registered between 101.2 F and 102.4 F. That means that some microscopic marauder has found its way into Ann's body while her white blood cell counts were dropped after the end of round 5 of chemo.

102.4 F may not seem like a lot but imagine it if you didn't have a functioning immune system. The rise in temperature is her body's last line of defense now that her white blood cells have all been exterminated by the chemotherapy. In absence of antibodies to fight off infections, her temperature will continue to rise until the invaders are dealt with or she shuts down permanently.

Cancer patients die all the time from secondary infections, just like the one Ann has contracted today. The formula is really quite simple, so simple in fact that even the dullest among us can understand it: More Chemo = Less White Blood Cells = Higher Chance of Infection = Higher Chance of Death. This little formula is of critical importance to people like Ann who have a disease that can be halted but not cured by chemo. In the final analysis the less time spent on chemo means less infections and a better chance of surviving a transplant!

Devotees of our little blog will remember chemo round 5. However, for those of you who are new or need you memories jogged; Round 5 is the round of chemo that we would not have had to do if the CBT had been approved. Yes that one.

Who do we blame? The companies that control her insurance. Harolds and EPOCH.

Are we going to do something about it? Yes we already have.

Are we finished? Not even close.

Wednesday, April 11, 2007

Television

Day 90

Let me get the important stuff out of the way first.

Tina rocks! She'll get it.

I got a very special package from my friend Eric, yesterday. Eric, you are famous. :) Thank you for the smile. I'm so happy for you and can't wait to see you at the new place when we get back. Now what will Kim do?

We had a rather eventful day today. Lee Maguire from channel 11 KHOU did a piece on our fight with the insurance company. He and Tony were very nice and couldn't have made things easier. We didn't even realize that they were filming when everything started. Chris and I just wanted to thank them for taking an interest in what we are going through.

Today was spent fighting to stay awake. After the interview, we had to go to MDAnderson for a class on bone marrow transplants. Sort of a "What to expect when you're expecting". I was surprised at how small the turn out was. There were only two other pre-transplant patients with their caregivers. Since I was so ignorant of what was involved in the whole bone marrow transplant process in the beginning, I thought that there would be several more people. The presentation was very informative and ran the gambit from total body irradiation to what to expect in the one-hundred days following the transplant. I'll admit that I was the one student in the class trying to keep my eyes open. It's not that the class was boring, it's just that I missed my nap. The nurse always managed to catch me just as I started to nod off. It's hard to hide in a classroom when there are only five other people to hide amongst.

The bone pain has begun and combined with the joint pain, walking is an agony. I was definitely walking like I'd just gotten off of the range. Poor Chris had to move at a negative speed to keep up with me. That's all I'm going to say on the side effects today.

I finished the knitting project with the eyelash yarn. The knitting aspect was hard, but the binding off part was a nightmare. It was like wrestling with a tarantula. Nothing but fuzzy bits flying everywhere--the carnage was awful.

No appointments tomorrow. We'll post if we hear anything.

Update

I would like to say a special thank you to Phyllis Adams of Phylway Construction in Thibodaux, Louisiana for her very generous donation. Phyllis, both Bob and Chris have spoken very highly of you, and I am eternally thankful for your kindness.

Tuesday, April 10, 2007

Day 89

We got to see a miracle today. Chris met a woman from Arkansas a few weeks ago who's very young son had been diagnosed with two brain tumors. His mother was told by their Arkansas doctor that there was nothing to be done for him. She didn't give up on him and brought him to MDA where a third brain tumor was found. Imagine being pregnant and having to watch your young son suffer through something like this. By chance, we ran into her at the pharmacy today. A stem cell transplant was performed and her son is completely free of tumors and they're going to get to go home. It goes a long way to show how faith and determination can sustain you. I'm happy to report he was more interested in his snacks than the crazy adults proclaiming over him. That's how it should be. I am jealous that he does the bald thing better.
We made some new friends today, as well. We've talked before about how you tend to cycle into the same schedule as other patients. Today, we only saw a handful of people we knew. There is one woman who comes with her daughters and we're constantly running into each other. Last week, the joke was that we were stalking each other. She crochets to pass the time, and I'm always fascinated by what she's doing. Today, she gave me one of the hats that she had crocheted and I absolutely love it. It's furry pink eyelash yarn. I'm addicted to eyelash yarn. I've been learning to knit, and my current project involves this yarn. It is impossible and I'm determined to conquer it. Sad that my world has refined down to ric-rac. She has an extraordinarily rare form of AML and is not in remission. It's another miracle that she made it to MDA. She was told that her condition was usually diagnosed during an autopsy. She's on her third round of chemo. We share the same doctor, so I know she's in good hands.

It seems that Dr. Thomas is a rock star among Leukemia doctors and I will be forever grateful that she decided to take me on. She always makes me smile, even when I'm feeling foul and want to take someone's head off. When faced with her determination, you don't have a chance. I'm tempted to pull a prank just to see if she can be phased.

It's a few days past Easter and I'm happy that I got to spend it on the outside. Round five was harder than I thought it would be. By this time, you'd think that I'd know exactly what to expect. Not so. I developed new side effects, which makes me feel like a whiner. My jaw got sore on both sides. The PA showed a great deal of concern for this today. She continually prodded my jaw to provoke a pain response. The ache comes and goes. I think she's worried about a relapse, but won't say. I'm not worried, since this is a side effect of Cytoxin. The one side effect that I had forgotten about involves Doxyrubicin. It settles into your joints and causes a great deal of discomfort. The weight of my body on my spine is excruciating. My hips and knees also feel like the cartilage has disappeared and the joints are just grinding together. I refuse to take the dilaudid. I'm not being stoic, I just don't like the disconnected feeling it gives. It doesn't rob your mind of the pain. You are finitely aware of the hurt, you just can't do anything about it. I am taking the darvon and that's taking a little of the edge off.

No magnesium today. I managed to keep a normal level on my own. However, I got a baby bottle of potassium. Just can't win. So long as they don't add a potassium supplement to my regimen of pills, I'll be a happy girl. The pill is the size of a mini-cooper and I've heard it bites back.
Since my treatment began, I've noticed that I've developed quite a few new freckles. This didn't bother me so much at first, since it was confined to my face. As my courses have progressed, I've developed spots all over my arms, and chest. Normally, I wouldn't have asked, but since my dad suffered from skin cancer, I thought I should try and figure it out. I asked Dr. Thomas and she told me that it was normal to experience hyper-pigmentation during chemotherapy. She did put in orders for me to get a full dermatological work up in the mean time. Another new doctor, another new set of procedures. All in the name of getting well.

Monday, April 9, 2007

Partying Barefoot

I got this recently from Mabyn Shingleton one of Ann's friends and best clients from Harolds. To help support Ann please conact Mabyn before April 14th at mabyn.barefootparties.com and schedule a party with her anytime in April. She is donating her profits to Ann's transplant fund.


This really made Ann smile...thanks Mabyn!

Selling our House

Day 88

Sorry about the lack of update from yesterday. We went to MDA and got the Gemstar pump disconnected. Which took all of 15 minutes. Ann spent the rest of the day fighting the nausea that always accompanies rounds with Doxorubin. She hasn't thrown up yet, but there have been plenty of close calls.

Later Ann's friend Van came by for a visit. Van is one of Ann's oldest and best friends, well more like a brother than a friend. He is bright, cheerful and always ready with a funny story. Ann met Van years ago when he applied for a job with Eddie Bauer and Ann was one of the managers. She encouraged him to enter law school and he is going to make on hell of a lawyer after he passes the bar.

Today we got the word that our house is officially on the market, and we got our first offer. Hurray I guess. Our little house wasn't much, but it was me and Ann's special place. Our first home together that we owned and the first place we really connected to. Anything we get from the sale of our special place will go directly to Ann's transplant fund and saving her life.

On either side of the front door is a small garden areas that Ann worked really hard on to make look nice. She planted lavender, petunias, rosemary, hostas, calladium and ferns. Then she carefully covered the exposed soil between the plants with pine sod to protect her new plants from weeds. I suppose that most of these plants are dead from neglect now.

In the corner of the garden was a Japanese Magnolia that Ann always wanted to cut down but I protested and she allowed me to keep it. Shortly after we moved into the house I was out on the deck and noticed the beautiful peach colored blooms on the tree and fell in love. A month later the blooms fell off, and I would look forward to each March and April when they would return. I had never thought I could be so deeply effected by a plant but I honestly was. I would sometimes stand in the freezing weather just so I could look at them.

Now it has been almost three months since we have been home and it's strange that the first thoughts I have of our house is of the lonely Japanese Magnolia. I wonder if the blooms are still there or if they are gone.

Update

I would like to say a special thank you to Rebbecca Maas of the US Department of Labor and Rhonda King of the Louisiana Department of Insurance. Both of you are wonderful people, and who have more than earned our utmost respect. Thank you for everything!

Saturday, April 7, 2007

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.












Friday, April 6, 2007

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...

Thursday, April 5, 2007

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?

Wednesday, April 4, 2007

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.

Tuesday, April 3, 2007

Letter to the Government

To My Honorable Government Representative:

I am writing this to you to draw your attention to the great personal difficulty of my Wife and me. My Wife Ann has been diagnosed with a very rare form of Acute Lymphoblastic Leukemia. We left our home, family and jobs in Baton Rouge Louisiana so that she can receive treatment at M.D. Anderson Cancer Center in Houston, Texas. Her physicians have stated that she must receive an unrelated blood/bone marrow stem cell transplant, for any chance of a cure. Due to Ann’s heritage, which is mixed race Asian and Caucasian, locating a suitable donor for her is problematic and has thus far been unsuccessful. Therefore, the recommended treatment for her is to receive an umbilical cord blood transplant as soon as possible before her leukemia relapses and kills her. This is expected to happen in the next few months.

Her employer, Harolds Stores Inc. (Harolds), provides her health insurance through Private Healthcare Systems (PHCS). This is in turn administered by The EPOCH Group. Both have agreed that her condition qualifies her for an unrelated or allogeneic stem cell transplant. However, they are denying her claim because they state that allogeneic cord blood transplants are experimental. In addition they may have violated her rights by not permitting her to file more than one appeal on this matter, or seek independent medical review.

Harolds is a clothier and is not qualified to make medical decisions or determine the necessity of medical procedures. Harolds and EPOCH are refusing her plea for service on the grounds that they are unable to pass the cost of the transplant onto the reinsurer. By doing so, they are forcing Ann into lesser treatments which the Doctors at M.D. Anderson estimate have only the slimmest chance of survival.

While Ann has not found a donor through the National Marrow Donor Program or a foreign country, it does not mean her condition is hopeless. Cord blood has proved to be as efficacious as Bone Marrow and is a well-regarded option for treating leukemia. In addition, Cord blood transplantation with adults is a growing practice within medical centers in the United States. Cord blood can prove to be a life saving miracle for those people, especially for minorities like my Wife, who are critically under represented among marrow donors.

The contact information for Harolds management is:

Harolds Stores Inc. (Corporate Office)
5919 Maple Avenue
Dallas, TX 75273
(214)-366-0600

Harolds Stores Inc. (Financial Office)
765 Asp Avenue
Norman, OK 73069
(405)-329-4045
Day 82

I know we promised some good news today, but things didn't turn out quite the way that we had anticipated. We had a meeting at the stem cell clinic, and it was an opportunity to meet my new transplant doctor. All of the stem cell doctors met to discuss my case and he relayed what they had concluded. Unfortunately, we are still tangled up in the insurance debacle. Please be patient, and we may be able to share some good news depending on the outcome of some things. It's frustrating, I know, but imagine how I feel.

I'm going to be going into the hospital today for round 5 of chemo. I'll admit that I can feel a tantrum brewing, because I don't want to go back into the hospital. I started going stir crazy in round 4. It's just that you go from living a somewhat normal existence, all things considered, and then you go to wearing a backless gown, eating off of a restricted menu, with people coming in to check on you every two hours 24 hours a day. I've had a nurse's assistant wake me up at 4AM to weigh me. Imagine waking up and being faced with a scale, with the expectation that you're coordinated enough to get out of a bed with guard rails and manage to stand on a platform for 60 seconds while your weight is being taken. The only plus that I've discovered about having your weight taken in the wee hours of the morning is that you don't weigh as much. That's the only recompense that I can think of.

I find that I'm impatient for things to move forward. I'm absolutely sick to pieces of being told that without a transplant that I'll die. Got it. Trust me, the first time I heard it, it was imprinted permanently on my brain. I know that I need to have a BMT or an umbilical cord stem cell transplant in order to survive. I'd love for the people in charge of green lighting my insurance to pull their heads out of certain orifices and see the light.

Today, I learned that a certain person in charge of managing my file at a place that shall go unnamed was getting testy with my stem cell social worker and the woman in charge of the business office at MDA. Let's call the testy person Kitty, since I don't think she'd appreciate being named outright. As it was told to me, she was adamant that my advocates at MDA were pushing me into the decision for a stem cell transplant using umbilical cord blood. Let me set the record straight right now. I am absolutely insulted that she thought that I would be stupid enough to let people tell me that I needed this procedure without doing quite a bit of research on my own. Kitty, I have met you and until this insurance nightmare, I had the highest respect for you. I am quite versed in the difference between a BMT and a stem cell transplant using umbilical cord blood. I can quote statistics and potential outcomes until you pass out from boredom. Chris is so versed in the topic, he can finish the doctor's sentences. I would never let a person tell me that I needed to do something without doing a little research first. How dare you. I am far from an idiot and don't appreciate being spoken of as one. Raising your voice to speak over someone doesn't make you right, it just shows that you don't have a valid argument to refute what you're being told. I know from experience that Kitty is intelligent and thoughtful and quick to solve a problem. I'm just surprised at her reactions to my situation.

As things stand, I have my orders to be admitted to the hospital. I'm tempted to burn them and go back to the apartment. I won't, because Chris would just wheel me up to the twelfth floor and tell them to set me up. He's the best thing that's ever happened to me and I don't know what I did to deserve him. I'm glad I did whatever it was. He's quit his job and uprooted his life to take care of me 24/7, and he hasn't complained. He's got quite a few more gray hairs as a result of this experience and I'm sorry for it. He didn't deserve to be put through this and I regret it.

Update

Very long and bad day...funny stuff is on hold until round 5 is over.

Monday, April 2, 2007

Grand Day Out...sort of

Day 81

Sorry about the lack of substantial update yesterday. Many gears are turning and many things are happening.

Today was a unique day for Ann all around. She slept late for a change and wanted to run some errands with me out of the apartment. The sleeping late is unusual because ever since her 1st round of chemo she is on "hospital time". That's measured in the span of time between a nurse waking you up to take your vitals and you being able to get back to sleep. Also, Ann tries to stay as hydrated as she possibly can, so that doesn't help with peaceful rest much.

After waking up I needed to run to Target (one of the only stores in Houston I can reliably get to and then back from) and Ann wanted to come with me. Her last CBC (Complete Blood Count) said she was no longer neutropenic so I agreed. Proper precautions still needed to be taken however. She would still have to wear a mask in public, there would be no touching anyone, no standing near groups of more than three people and if there were children around she had to get away from them immediately.

Target wasn't very busy before lunch and we didn't see many people at all (except for near the Easter candy). Ann said she felt alien walking around in a new place. Target may seem mundane to you or me, but Ann has seen nothing except the inside of MD Anderson or our charity apartment for 80 days. People by and large reacted to her as an alien presence also. People would go out of their way to give her a very, very wide berth and most didn't make direct eye contact or even smile.

Ann has been reading Charlaine Harris' book "Definitely Dead" (not crazy about the title) for the past two days and went back to reading it while I set up our new HP 5600 fax/printer/copier. I am sick and tired of having to go to MDA and pay to park if I want to fax something. So the HP should take care of that and allow us to send Ann's story to new corners of the media.

Tomorrow Ann is going back in for round 5. To bring you up to speed if you are new, right now we would be going in to start her transplant if her Employer Funded Health Plan could understand that "Medical Necessity" means "Service or treatment deemed absolutely necessary in treating a patient and the omission of such could adversely affect the patient's condition". Or that "Necessity" is an imperative defined as "essential, inevitable, inescapable, predetermined, compulsory, absolutely needed, required" by Webster's dictionary. I digress...

Tomorrow Ann will be restaged before being readmitted into the hospital for another round of Doxorubicin. A restaging is essentially what they do to new patients when they first come in to MD Anderson. Blood work and lots of it. Bone Marrow Aspirations. Lumbar Punctures. X-rays looking for solid leukemia tumors in the body cavity and breasts (yes it's creepy that leukemia can do that in addition to all the rotten things it can do already). Lumbar Punctures looking for leukemia cells in the central nervous system (this one scares me to death).

After all that we have a very special meeting. I know I have teased it, but everyone will need to be patient for a day or so more.

Plus, Ann has something funny planned to take the edge off, and hopefully make a few of you chuckle or at least smile a little.

See you tomorrow.