Corrections

The last few days have been rough to say the least. I know Chris is doing his best to keep everyone posted on how I am doing and it's not easy.

So far in my treatment, things have been progressing. I was told to expect bone pain with the neupogen and thus far, it hasn't been unmanageable. I can usually take a darvon and be fine. Monday's bone pain started out like normal, just a little ache. In the midst of everything going on, I didn't think anything of it and let it go longer than I would have normally. By Monday night, the pain in my spine, legs, knees, and ankles was so intense that I couldn't move. Trust me, I have a high threshold for pain, and I have never experienced something so horrible. I tried to ride it out, but Chris prevailed and got me to the emergency room.

I was given an IV drip of morphine which didn't even make the pain flinch. Unfortunately, morphine does make me nauseated. I was subsequently given three bags of dilaudin through my CVC. This didn't so much take care of the pain as it made me unaware of everything else. I was discharged at around 3AM. As soon as I got in the car, I threw up and we were off.

I slept until around 4:30AM when the pain returned and woke me from a dead sleep. We hadn't filled the prescription for the dilaudin pills the night before, so I didn't have anything to help. We returned to the clinic the next morning and were directed back to the ER. The attending physician elected to treat the pain with pills instead of an IV drip. This was disappointing to say the least. The pills take around an hour to kick in when they do. I was given two within two hours. Each time I requested another, I didn't get it. The pills only take the edge off of the pain.

I received a platelet transfusion and was in the ER all day. Overall, just another day at MDAnderson.

I've been taking the pain pills off and on since last night and they make me feel like a broken puppet. None of my parts go together right. My head feels lopsided and all of my joints still ache more than a 32 year old woman's should. I have appointments tomorrow, which should be interesting, since I'm sure I'll be completely incapacitated by the narcotics. I'll try to make more sense tomorrow.

Public Disclaimer

Ann has asked me to edit/remove two posts from the site, one from today and the other from yesterday.

Ann was afraid that those posts where detracting from the intent of the blog as a place for friends and family to check in on her. I can't in all honesty say I disagree with her judgment. Here is what you need to know in summarized form from the edited and deleted posts. Just the facts - no hyperbole.

1) MD Anderson says Ann needs a Stem Cell Transplant have a chance of being cured.

2) Umbilical cord blood is the only source of stem cells they can find for her.

3) Ann has been denied this procedure by our insurance company.

4) We are appealing the insurance companies' decision.

Also after analyzing the traffic that has come through this site recently I feel that it is now necessary to make the following statement.

Neither Ann or I are Doctors, nor do we have any medical training. Any views or information posted on this blog is either our untrained speculation or personal opinion about Ann's condition. The content of this Web log is intended for public consumption, but it does not attempt to report medical information with any necessary precision or accuracy.

Unbearable Pain

Day 54 & 55

Monday night as we were going to bed Ann told me that she was having some unusually heavy bone pain. Since she is taking Nuepogen we expect a certain amount as it stimulates the growth of white blood cells and bone marrow that have been depleted after chemotherapy.

When I asked her about it she admitted that she had been having it earlier in the day but had started crying over the news of the denial of her BMT and forgotten to take her Darvon. Now after a few hours the pain was more intense than she had ever felt before. Even taking the maximum number of Darvon allowed by her Doctor didn't do anything. The pain was so bad that she was crying, shaking and beginning to curl up into a fetal ball.

I packed her up and took her to the Emergency room at MDA. They evaluated her and came to the conclusion that the pain was because of the Neupogen shots. Since Darvon wasn't being effective they elected to try giving her painkillers through her CVC instead. The first try was with Morphine, and it didn't work at all. The next was Dilaudid (aka hydromorphone) and it took 4 bags of that to get it under control.

When we left the ER at 3:00 am Ann was so nauseated by the drugs that she threw up in the car and then stay conscious only long enough for me to get her into bed. Sadly this didn't last. Three hours later she was awake and complaining of the same brutal pain.

The next morning I decided to take her into the leukemia clinic at MDA to see what the problem was. I though they could run some blood tests, take a bone marrow sample, anything. However Ann's leukemia Doctor wasn't there and we were again directed to the emergency room. Where Ann again was hooked up to Dilaudid IVs. The did take blood and noted her platelets where low (34 K/uL). Also that she was having some monthly bleeding so they gave her an transfusion of platelets to help with clotting.

We finally left the MDA ER at 4:30 in the afternoon with a prescription for 2 mg Dilaudid in hand. I'm not sure how well it works as Ann takes it and says that it just takes the edge off the pain but doesn't make it go away. She says the pill makes it hard for her to think and that upsets her.

We have the day off from appointments at MDA and I am hoping to catch up on housework, and some necessary business regarding her appeal. I am going to try to keep Ann in bed or off her feet as much as possible. I hope her bone pain begins to subside soon.

Late Post

Day 53

Sorry about the lateness of this update, but yesterday we were a bit rough around the edges for different reasons and it slipped our minds. We will try to do better today.

Ann received a package of knitting supplies from my Mom and spent most of the day either fighting heartburn and nausea or learning different stitches. It confounds me but she is having a great time with it and says it relaxes her. If that's the case then I'm all for it.

The other main event for yesterday was that my Mother called and told us that she was admitted to the emergency room last night. Three weeks ago she had an episode where she choked at a restaurant and the Heimlich maneuver had to be used and she is apparently still having problems swallowing. She has been complaining of a "sore" feeling in her throat and is coughing pretty constantly lately.

Last night the ER looked down her throat and discovered a 1.4 cm "spot" on her Thyroid. Both me and Ann encouraged her to go to see an ENT Monday and get checked out.

I'm starting to get that same ugly feeling that I had when Ann was diagnosed. I hope it's just my imagination.

Naked Scalps and Other People

DAY 52

I wake up in the middle of the night composing eloquent blog entries in my mind, only to forget the topic and language upon waking up the next day. Frustrating to say the least.

Since I was discharged from this last round of chemo, my nausea has remained at a constant level. Chris and I have been vigilant about my nausea medicine, but sometimes it isn't enough. My body is now trained to let me know when I have to have it. For example, I stayed up well past my usual bedtime to watch a movie last night--Stranger than Fiction; I highly recommend it. It was past 2am before I went to bed. I woke up at 7am, exactly the time for my medicine. This happens everyday now, regardless of when I went to bed, or what time it is. Heartburn is also a constant companion. I got it after round one and I expected it again. It makes eating a chore and there are times that I just don't want to eat, because I don't want to deal with the reflux and pain. I'm on prescription strength pepcid twice a day and it helps, but it doesn't eliminate it. The doctors have also told me that all of the anti-biotics that I have to take contribute to the problem, as well. This is the price you pay to try and stay well, I suppose.

When I am out in public, I tend to cover my head. I do this for several reasons, one of which is that the chemo drugs make your skin especially sensitive to sunlight and sunburns are a constant danger, regardless of how much you limit your exposure. When I first shaved my head, I had a hard time regulating my body temperature and I found that hats helped. Now that I am used to having a naked scalp, I don't have quite as hard a time. When I am in the hospital, I leave my hat on, since I've noticed that most other people have a strange reaction to bald women. A problem with keeping my head covered is that when I am feeling nauseated and on the verge of vomiting, I begin to get very hot and clammy, especially on my scalp. When this sensation creeps up on me, I find that there is nothing that I can do to stop myself from throwing up. I don't know why it took me two months to figure it out, but the other day, when I was feeling particularly bad at the clinic, I decided to take my hat off to cool down. I felt better immediately.

I left my hat off for the rest of the day and didn't think anything of it. When you are a cancer patient, in a cancer research facility, you tend to think that you look like 50% percent of the population, i.e., sick, bald, and trying your best to be comfortable amongst it all. There are people who will sit next to you and perform any number of bodily functions that would be absolutely unacceptable in any normal social setting, but you won't bat an eye, because you know why they have to do it and they absolutely cannot help it. I have no vanity about being bald. It just didn't occur to me that I wouldn't be when this all started. I thought, well, I'll fit in with all of the other patients. I've since learned that there are any number of personalities that do not share my insouciance. Men walk around bald, patient or not. Women wear scarves, hats, or wigs. I have only encountered one other woman without head covering. She is much younger than the average patient--maybe early twenties.

The day I left my hat off, I got more stares for being a bald woman than I have since starting treatment. I made a point of staring back and had many people avert their eyes. Some people made a point of approaching me and commenting on the shape of my head. Some people made a point of singling me out in waiting rooms just to chat, even though I either had my eyes closed, or my head bent over a magazine. It was like a strange mania. People felt compelled to connect. This generally doesn't happen. I find it strange that in a facility filled with people who are to some degree going through a similar physical experience and who in some capacity resemble one another in the sense that cancer treatment does make your hair fall out, are arrested by the sight of a woman with a bald head. Trust me, I know that I do not look like the former Miss Universe in the first Star Trek movie. I look like a bald, puffy faced me. Small children do not run away in horror at the sight of me. I do not think that there is a vacancy under a bridge with my name on it. In fact, I have a very well developed self image, if I do say so myself. I enjoy not having to plug in a blow dryer. It takes me less than 5 seconds to dry my head. It is a luxury that I will probably miss when I do get my hair back. We'll see.

I have decided that I will continue to leave off my hat when I am inside. I am more comfortable, and that is what is most important to me.

Down Time

Day 51

Hello everybody...this is a difficult day for me because Ann has no appointments at MDA. As fans of our little blog will know that days like today drive me nuts. I usually "cope" by taking inventory of the things we need and planning small trips to pick them up. Today however I occupied my time by contacting MDA, the Louisiana HIPPA plan and our insurance company (in that order).

The MDA call was to see if I could get Ann enrolled in a Physical Therapy class of some kind to try to help build up some muscle mass on her before the BMT. Unfortunately, and I didn't know this, MDA has been evaluating Ann all along for just such a thing. They told me that when they felt like Ann "needed" it then she would be placed in under the care of a Physical Therapist.

Next was the LA HIPPA plan. Having "mixed" results, to put it kindly with LA Medicaid, I thought that if worse came to worse then we could get Ann supplementary insurance with Louisiana's High Risk Health plan. The good news is "yes" they will cover Ann immediately if our primary insurance failed. The "bad" news is that its expensive and "worse" is that the HIPPA plan has a $500,000 lifetime cap and a $100,000 yearly cap. So we would hit the yearly HIPPA cap with a single months billing from MDA. Yikes!

Still it might be an option after the BMT. We don't have anyway of predicting the medical expenses that we will be incurring in the first few months Ann is out of the hospital. From the blogs of some other BMT patients that we have read it looks like we can plan on constant lab work, transfusions and bone marrow aspirations to check for relapses. I'm not sure if there is any "maintenance" chemotherapy after a BMT but I'm sure it is a possibility too.

As a last line of defense I have decided that we will have to pursue some fund raising through a 501c3 organization. There are several like the National Foundation for Transplants and the National Transplant Fund but they have some different requirements on how funds are raised. As I understand it the 501c3 organizations are non-profit and tax deductible. The funds that we raise through them would be part of a general fund but be "ear-marked" for Ann which she could use for only medical expenses.

The last call was to the Insurance Company to ask them about the status of the Cord Blood funds. If you remember from two days ago, we had met with the Transplant Doctor and she told us that MDA had located two units of cord blood and where waiting to get the funds from the insurance company to purchase them.

My question to the Insurance Company was very basic "Will you pay for the cord blood transplant? Or do you consider it a experimental procedure"? Our anxiety over this, apart from the obvious one of Ann wanting to keep living, is related to the insurance company's previous reaction to an "experimental" drug that the Doctor wanted to use in the BMT when the plan was to use an adult donor.

After several conversations and explaining the situation to three or four people, I still don't know the answer to that question. The closest I got was "our Doctor's will have to review your Wife's case and they will make a decision on the necessity of the procedure". So a Doctor that has never seen my wife and who we don't know the qualifications of, NOT the transplant Doctor who works at the #2 cancer center in the US and says the procedure is absolutely critical, and has examined my Wife 1st hand, is going to get the say so on if the purchase of the cord blood units. Nice huh?

It's hard being diplomatic with people sometimes but so far I think I have done a fair job. I was promised that Monday we will know what the insurance company is going to do. I promise we will keep everyone posted.

Ann is doing well today. Her nausea is minimal but she is having some progressive heartburn which she says is very uncomfortable. Added on top of it she said that the "tang" taste that she experienced in the 1st round of chemo has started to creep back in. I picked up some more of the prevention mouthwash that my Sister sent to us, that seemed to help last time.

She says that the Vincristine that she got yesterday is starting to kick in and she is beginning to get very run down tonight. In addition her platelet counts must be getting low because her hands and arms are beginning to bruise. I freaked me out the 1st time I saw it but apparently it is just one of those things that happens under heavy chemotherapy.

Ann has promised to either post tomorrow or do a video, but that's all for tonight.

Out Patient Chemo Viedo

Day 50

The day was too long to type up a summary of everything that happend, so we made a short video. Hope everyone enjoys!