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.

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!

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...