The color red will be important to you.

Day 79

I'm going to try to keep any bad news to a minimum, because quite frankly, I'm sick of hearing it and reporting it.

I'm sorry this post is so late, we had appointments and I ended up needing another baby bottle of magnesium. We had to wait for an hour for it and after that we had to fill some prescriptions. While we were waiting for the baby bottle, we made a new friend. Chris and I kept seeing him in the leukemia clinic since day one. Today he came up and introduced himself. His name is Carl and he has Burketts Lymphoma. The treatment for it is similar to leukemia, so his lymphoma doctor sent him up to the leukemia wing. He also now sees Dr. Thomas. He's in remission and that's wonderful news. We also met a gentleman from Houma, LA. He's got AML and is also being treated by Dr. Thomas. Small world.

I had a very pleasant surprise yesterday. A friend that I haven't seen in three years surprised me by dropping by. Matt and I worked together years ago and he is a very dear person. He took my mind off things by making me laugh and catching me up on what he's been up to. Ladies, he's single. ;)

I want to thank Ann T., Matt, and Fort for their generous gifts. You guys shouldn't have. It is far too generous and Chris and I are thankful. When this is all over and we get back, we have to get together. Chris is quite the gourmet chef and he can make dinner while we catch up over a bottle of wine. If there is anything that any of you might need, please, ask. We'd be happy to do it.

I'm still having headaches, but I sincerely think that they are now stress induced. The left side of my neck is so tight, it hurts to move it around. I keep telling myself that I need to relax. One of these days, I'll figure out how to do that.

I'm happy to report that my blood counts are coming up. They've reached the point that I'm allowed to have raw vegetables. Quite frankly, I'm sick of eating out of cans. We celebrated by getting Chinese take-out. I had to wait out in the car, since I still can't be around large groups of people. It was wonderful to eat something that didn't come out of the freezer or a can.

About the title of this posting; it's what was in my fortune cookie. I'm sure it will make sense one day

Kim Jong il Sucks!

Day 78

Hello everyone. Today we have no appointments at MDA so it's going to be an uneventful post. I can report that Ann has been suffering from some headaches, Her Doctor thinks that this may be hormones from the lupren shots, but I think it's stress brought on by everything we have been through in the last couple of days.

Headaches are also a primary symptom of leukemia relapse so they are discussing if we need to do an MRI to look for cancer in her CNS. All of the lumbar punctures that she has had to endure up to this point have turned up clear and free from malignant cells. A pretty good sign but far from a complete guarantee that it isn't there.

I wanted to mention that I noticed a young couple (Husband and Wife) on the bus coming home from MDA yesterday, and they look like they are just starting. The woman has leukemia, I think and the Husband is wearing the semi-permanent scowl that I had when Ann first got here. I wanted to say hello to them but, it just seemed really awkward and then the opportunity was gone. I really hope we get a chance again. They both look like they could use someone to talk to.


I know that things have been kinda dreary on the blog here (CBT, Appeal, Denial) so we have decided to have a little fun. Ann has something planned for next week that she thinks you'll all like. Right now though, I wanted everyone to see how Ann imagines her leukemia cells.


Yes that's right...Lil' Kim from Team America: World Police, millions and millions of him .... only microscopic!

Lastly I want to add there is some news at MD Anderson which we are encouraged about. We hope to be able to share it with you Tuesday.

Where things stand

This is to bring everyone upto date on where things stand at this point.

It has come to my attention through discussions with State and Federal Agencies that the party responsible for the denial of Ann's appeal is probably Harold's.

Harold's has expressed to me that they are concerned the content of this blog reflects negatively on them.

We withdraw all statements we have posted on line about other organizations involved, as I recognize them to be most likely inaccurate at this point. Those posts will be deleted or redacted.

Short Story

Day 77

After yesterday's admittedly disappointing events, we are moving forward. We have no choice, but to continue to fight for as long as our hearts, spirits and bodies will last. I love Ann too much to let her go.Let me share a short story with you...

Me and Ann where married in Negril, Jamaica and hours before the wedding disaster nearly struck. We decided to take a Hobie-cat out for a short sail in the morning before returning to prepare for our wedding in the afternoon. I'm not much of sailor and about 500 yards from shore the wind changed direction and capsized us. Ann went one way and I went the other.
I immediately started looking for Ann when I got to the surface I looked around for her. As it dawned on me that I couldn't see her I dove under the upside down cat to see if she was underwater. We had overturned in about 25 feet of water and the cat's sail had turned up the sandy bottom of the bay, I couldn't see much. As I got back to the surface I was beginning to panic.

After I circled the cat once more I looked over my shoulder and I could see the hotel safety boat coming out to check on us. Then as the crest of a wave passed some 70 feet away I could see Ann awkwardly paddling in her red life jacket. She was farther away from the boat than I imagined she could have ever gotten and she was clearly having trouble.

The hotel boat stopped for her 1st and then me. Then the hotel lifeguards righted the cat and we towed it back to shore. When we got to the beach, Ann was shaking and exhausted. I asked her what she was doing so far away from the boat. It turns out she was trying to save our camera which was in a ziploc bag. The current had started to carry her farther and farther away from the boat and she didn't realize how much trouble she was going to have.

That day in those few frantic minutes I realized what my greatest fear was. Now I have to confront it and defeat it. I will not give into it again and I will not let Ann slip away from me a second time...I love her too much.

Platelet Transfusion Video

Day 75

We have some good news!

WBRZ (Channel 2) in Baton Rouge has agreed to do a story on Ann. They have already taped some segments, and we are very excited that they will be interviewing us tomorrow!

2000

Day 74

So, we still haven't heard from the insurance company. Chris did call them as did our social worker and no one seemed to know what was going on, or who could help. This doesn't give me a warm and fuzzy feeling. This organization handles millions of dollars worth of claims and I find it hard to believe that no one knew what was going on. If we were being told the truth, someone needs to restructure and buy a clue. If I happened to be paying a third party to make such an important decision, I'd know their name and how to get in touch with them. Of course, I'm only the patient being left hanging, so I don't really count.

Enough of that soap box for now, but I'm sure you understand my frustration.

I have appointments all day tomorrow, so that day's post will probably be late.

I had to have another long nap today. Sleep in the middle day is involuntary right now. I can't keep my eyes open, literally and will fall asleep sitting up in the middle of lunch. This indicates to me that my red blood cells are very low.

I've also started bleeding after every neupogen injection, so my platelets are going down as well. This will probably mean transfusions tomorrow. As you all know, that means that we will be at the hospital until after six. At least there are two cafeterias--one is definitely better than the other, and I now know where every vending machine is on every floor. They actually have a vending machine that sells bologna sandwiches. Chris was lured in by this and reported that it was absolutely vile. I had to ask, who would buy a bologna sandwich from a vending machine? ( Chris wanted me to add that he only had one bite of the sandwich.) The same machine also sells cheese cubes replete with saltines. Yummy. Seriously, there's a market for this? How do they keep the food fresh? If you saw the other selections, you'd be puzzled too. Luckily, the machine next to it sells ice cream novelties.

We've exceeded two-thousand hits on the blog. This is amazing, since we had initially intended the blog for our family. I hope that it can help someone else who might have been newly diagnosed to know that they aren't alone. We're also amazed at the number of hits that we're getting off of facebook.

So we're watching The Name of the Rose tonight. It's been years since I've seen it. It features Sean Connery and I couldn't help but think of the old Saturday Night Live sketches featuring Darryl Hammond as Sean Connery on Jeopardy. Everytime I see a Sean Connery movie, I have to snicker. It's juvenile, I know, but I have to find humor somewhere these days. I'm lucky in that Chris shares my sense of humor. "Suck it Trebek"!

The bone pain started today. This means that my bone marrow is starting to produce white blood cells. Also, the PA increased my dosage of magnesium supplements last week. I started out at one pill and have moved to six a day. As it turns out, magnesium is very important to brain functions. Chemotherapy depletes the magnesium in your body. This would explain why I can't manage to maintain a healthy level on my own. Now, I have to report a special side effect just in case anyone decides to over medicate. When you take too much of it, for instance six pills, the effect is the same as taking milk of magnesia. The fun never ends.

Now here's something ironic. I can't stay asleep at night. I get up at least four or five times. I don't know if this is because I've become conditioned by being in the hospital so often, or if it's because of something else.

That's it for tonight. I hope everyone is doing well. I'd also like to thank all of the people who have donated. Chris and I are very grateful.

Thank You Paige, Hello Facebook

Late this afternoon we started to notice people from facebook linking onto Ann's blog. Ann's facebook account was still active at LSU so we decided to have a look. As it turns out a total stranger who read our story in the LSU Reveille had decided to help by campaigning on facebook.

Paige, we are forever grateful to you for your wonderful idea!

We would like to thank Angelle at the LSU Reveille, once again. Because of her story, Ann has received a lot of attention that she would not have had otherwise.

Joe and Tina, as if we would forget you. Joe, thank you for linking us off the Advocate. You started it all. Tina, thank you for the open letter and not getting arrested for accosting strangers on the street. :)

Laura Ingraham Rocks

On the morning of January 9th 2007 I was listening to the Laura Ingraham Show at my office. Unfortunately because Laura is not carried by any of the AM radio stations in Baton Rouge I had to purchase a Laura365 account and stream her over the internet. I remember that morning , between phone calls to a client, hearing Laura talk about the story of a woman who had been cured of acute leukemia with an umbilical cord transplant. I remember thinking "Wow! I didn't know they could do that..." before I nose dived back into the project schedule I was working on.

Little did I know that Ann would call me at lunch time that day and say the fateful words.

"Honey, the Doctor called and he wants me to go the Hematologist..."

Yesterday I was wracking my brain trying to remember the story that Laura was reading from. I would have gone back to the The Laura Ingraham Show archives but, I had long since terminated my membership to save money for more important things. So after a ton of fruitless googling, in desperation I penned an email to Laura and asked her for the citation of the piece she was reading. I honestly didn't expect an answer.

Much to my surprise I got one!

I received an email with a few really interesting stories about the efficacy of cord blood in treating leukemia that I had not seen before. This one about a Double CBT performed in Israel is particularly interesting, because it is exactly the same procedure that MD Anderson wants to do for Ann. In addition to researching the show info I asked about, my Laura365 account is being reinstated as a gift.

I can't say thank you enough! I'm really touched that someone high up enough in the national media that they sub regularly for Bill O’Reilly, would take the time to do something like that for us.

All politics aside: Some people just have their hearts in the right place, and it really shows through.

Videos For Our Friend Nancy Sakakura

Day 73

Part A



Part B



Please visit Nancy's site at http://nancysakakura.blogspot.com/ if you would like to learn more about what going through a stem cell transplant is like.

Edit: Fixed the Youtube feeds.

Playing Chicken With A Great White Shark

Day 72

So, no news from the insurance company. We were told on Monday that we would definitely get a call on Friday. Long story short, our social worker at the BMT clinic contacted the insurance company and was told that our case worker would be out until Tuesday. Professional courtesy doesn't even begin to cover how I feel about our new case worker. It's beginning to feel moot, but a life is hanging in the balance here. The insurance company has had our appeal for two weeks now and we still don't know what our status is. I could start ranting here, but I don't feel like it would serve a purpose. I'd just like a chance at living past forty. So to sum everything up, it feels like we're playing chicken with a great white, and I have a feeling that the shark isn't going to flinch.

We did have appointments today, which is why this is so late. I apologize for that. I had blood draw and review this morning. My counts continue to fall. My magnesium was lower than normal, so they ordered another baby bottle. We had to go to the ATC clinic to get it and I have to say that everyone was in a really foul mood. We had to wait two hours for the order to get filled and then we had to wait another hour for a bed to become available. I did get to listen to another patient snoring like a lumber jack for the better part of the wait. He was very impressive. When we got in, the nurse wanted us to stay for the five hours that it would take the baby bottle to empty. We managed to convince her otherwise and only had to stay for half an hour to prove that the balloon was emptying.

On a positive note, the LSU Reveille ran our story in Friday's edition and Chris and I are grateful for the coverage. We'd like to thank the reporter for taking an interest and getting our story out there. If you'd like to read it, here is the link to the LSU Reveille's story. For those of you who have been following the blog, you'll notice a few mistakes in the story, but they got the main gist of it right. Our reporter was genuinely concerned about what we are going through.

I do have some fun new side effects to report. While I was in the hospital the last time for chemo, I ended up retaining more fluid than I was eliminating. Four pounds to be exact. I didn't realize it at the time, but my fingers had swollen to the point that my rings wouldn't come off. By the time I was able to remove my rings, the skin underneath had been rubbed raw. This is the first time since I got married that I've removed my wedding band and anniversary band. It's been over a week and because of my condition, my fingers still have not healed sufficiently for me to start wearing my rings again. It's a very disconcerting feeling to be without my wedding band. On the bright side, the doctor couldn't find any sign of infection in either wound, so I should be grateful for small miracles.

Dr. Keeler asked me how drug induced menopause was going and I honestly had to think about it. She was concerned that I was experiencing the worst side effects. I haven't had any serious mood swings and I promise, I checked in with Chris on that one. I have experienced hot flashes and that is absolutely no fun. Out of nowhere in an air-conditioned room, you'll start to feel like you're sitting in a sauna. Then there's the sweating. This is separate from the hot flashes. I'll be sitting in a waiting room and for no reason what so ever, I'll start to sweat like I just ran a marathon. It's not because I'm hot, in fact in most instances I'm fairly comfortable. Now imagine wearing a surgical mask and sweating like a fiend. It's pretty disgusting. Then there's the whole "shaped like a potato" thing. That could be genetic, but I'd like to think it has something to do with the drugs. Other than the above mentioned, I haven't had any other menopause related side effects. This leads me to hope that when I have to go through it for real, I can say the same.

No appointments scheduled for tomorrow. We'll keep you posted if anything exciting happens. We'll probably post if nothing happens. Who am I kidding, we will post even if nothing happens.

Day 71

There are no appointments scheduled for today, so I have the day off to work on my knitting. What started out as a luxurious shawl has now become a cat cozy, or so I hope. I'm still learning and the curve is steeper than I thought it would be. I have a new appreciation of people who can actually knit socks. I plan on taking on a scarf as my next project. We'll see how it turns out.

My counts are still dropping. I know this because I haven't had any bone pain recently. I had attributed this to the new neuropathy drug, but the PA we talked to told me that the probable reason is that my marrow hasn't started to generate any white blood cells yet. Needless to say, I was a bit disappointed. I was looking forward to leaving the bone pain behind as a side effect. I'm still receiving neupogen shots twice a day, so my counts should start climbing sometime next week.

The PA increased the dosage of some of my drugs, so I'm having to take 3 anti-virals a day and 6 magnesium pills a day. I still can't maintain a normal level of magnesium on my own. It's very frustrating, and I'm just sick of pills. I've developed sores in my mouth as a result of the last round of chemo. This is the reason for the increased anti-virals. I've been told that when the problem resolves itself, I can go back to the regular dosage.

I'm happy to report that my eyes are starting to return to normal. They're still sore and the ophthamologit's nurse said I'm showing signs of astigmatism. I managed to fail the reading test miserably. I had been rather impressed with myself until I asked how I had done. I'm 20/20 in the left eye at distances and the right eye is some horribly ridiculous number, ie. I don't see very well out of it. Up close, I can't really read regular print. The nurse told me that this would probably clear up once all of my treatments were done. It seems that steroids alter the shape of the lens in the eye and this has contributed to my sight problems. I've also been informed that I'll probably have problems with cataracts once everything is said and done. The side effects of chemotherapy are legion and I sincerely wish that doctor's would stop telling me that I'll have this or that new problem to deal with down the road. I know that they're just trying to keep me informed.

We still haven't heard about my transplant. I'm concerned that the cords that have been genetically closely matched to me will be sold off for another patient. It's frustrating to know that a third party will be deciding whether or not I'll be able to get the procedure that prolongs my survival. This is a person who's never met me or even spoken to me via phone. It's hard to imagine that this happens everyday to people all over the country. I know that we aren't alone in our fight, but sometimes it feels like it. If you've ever had to dispute something with your insurance company, you know what I'm talking about. You're just a number with a dollar sign in front of it. We're supposed to get a call from our new case manager, but with every hour that ticks by, I sincerely doubt that we'll hear something. It's been two weeks and I'm starting to get very anxious.

I know that there are a lot of wonderful people praying and pulling for me. Regardless of what happens, I plan on being home before the end of the year. Houston is nice and we've been treated very well here, but it's not home. I miss everyone and I'm ready to resume my life. I'll post if we hear from the insurance company today.

Novocaine, Lanacaine or Michael Caine

Day 70

Sorry everyone for the late update today. We had a busy day today that started with lab work in the wee hours of the morning--the only surprise we had was the amount of people that the clinic was trying to process this morning. There had to be over 100 people all waiting to have blood drawn and vitals taken.

The backlog was so great that we got bumped from our 7:30 am appointment to see the eye doctor. When we did get to see Dr. Kim she told us that Ann's eyes are looking better and in a few days we will be past any serious chance of Cytarabine tearing her eyes up. So thats good news, although she still has to keep doing steroid drops in her eyes every few hours to make sure it stays that way.

After that we had to go back to the leukemia lab for a review of Ann's blood work. In the process we ran into a woman who started her treatment the same night as Ann 70 days ago. I'll call her Betty because I didn't get her permission to use her real name. Betty has ALL like Ann, but unlike Ann she is PH+ (Philadelphia Chromosome positive), she is my age (36) and on the same chemo protocol as Ann. On her 1st round of chemo she got an infection from her CVC and contracted pneumonia, then she went into renal failure. Her kidneys did not recover for two and a half weeks! Her condition got so bad that the Doctors considered aborting her off of chemotherapy all together!

Luckily Betty did make a recovery and she is now preparing for her second round of chemo. Her second round in more than a month, that kind of set back could mean that her battle with leukemia is now in serious doubt. Betty may be an example from the extreme end of the spectrum of patient's reactions to chemo, but she serves as an example that this is not a game. Ann's life is at stake, and every day that delays us moving to a Transplant is one more day of treatment that may overload her internal organs and potentially kill her.

At the lab review we were informed that true to form Ann's blood work continues to drop like a rock after the chemo from round 4. This is expected to be the norm until the neupogen shots spur the production of new healthy bone marrow. The other thing we found out was that Ann's platelet count was so low that she would require a transfusion of two bags of platelets.

After which we returned back to our apartment and had a pleasant surprise. The Blockbuster Total Access that I signed us up for finally shipped our 1st selection of movies. Casino Royal, Talledega Nights and The Man Who Would be King. The last one was one of my favorites and stars Sean Connery and Michael Caine and has inspired one of our favorite inside jokes while we are here. It goes something like this:

If you need a shot for pain they start by giving you Novacaine...

If it's still bad next is a shot of Lanacaine...

But if things are really, really bad you get Michael Caine.

It's always fun to get a good conspiratorial chuckle between us while the nurses and PA's wonder what the heck we are snickering about! It also helps me to remember why I love my Wife so much...she shares my warped sense of obsure humor.

Good night everyone.

Minor excitement

Day 69

Well, Mr. Clark was out roping steers again. It really is great to see that he's feeling well enough to practice roping.













We had a minor emergency today. While Chris was doing my heparin flushes--this is a procedure where he injects my lumens with a small amount of blood thinner to keep them clear, he encountered a blockage. This means that there is a blood clot in the line. We went to the hospital to have it taken care of. The nurse at the infusion clinic was very nice and she had it fixed in no time. She also changed my dressing, since it had started to come undone. I didn't even notice, which is rather remiss of me, since I need to keep my CVC covered for health reasons. If it gets infected, I'll have to postpone treatments until the infection clears up. I suppose that I've had it for so long, that I don't even think about it anymore. That's a strange thought considering I have two silicone lines dangling out of my chest.

Since we were at the hospital, we stopped by the gynecologist to have my luperon shot administered. It was really nice to see Dr. Keeler. She's always upbeat and it's nice to be around people like that when you're having to deal with treatments all day. She was very positive about how I was responding to the luperon and our fingers are crossed that it does the trick. I honestly have to say that I'd rather undergo temporary menopause versus having my ovaries removed and replaced in my arm or leg. I know it sounds squeamish, but I just can't bend my mind around having an internal organ implanted in one of my extremities. I know it's done all of the time, and I'm just being a weenie.

After all of the excitement, we had lunch and returned home. Mr. Clark was still roping the mini steer when we got back. He said that he was returning to his ranch for a visit this weekend. I have to admit that I was a little jealous. I miss everyone and I'd like to come home for a visit. My blood counts are plummeting from the last round of chemo, so I know that Dr. Thomas would veto anything involving leaving the state. We're still waiting to hear about the stem cell transplant. Everyone cross your fingers and hope that things turn out for the best. I'd like to come home before the end of the year, healthy and whole.

Being tickled

I'm going to start this post at the end of our day and work my way around. When we got off the bus today, I saw something that really tickled me and made me smile. In the parking lot, off to one side there was a small metal stand with a gold calf's head complete with little horns attached to it. At first, I thought it was a garden ornament until I noticed a man swinging a lasso at it. When I put it all together I had to start laughing. There was a man in the parking lot roping a tiny metal steer. Only in Texas. Here's the really funny part. Chris went to take the trash out and came back about 45 minutes later with a grin on his face. Turns out the cowboy was one of our new friends from the leukemia clinic. He'd just gotten back from his ranch and was feeling well enough to rope. We'd run into his wife earlier in the day and I had wondered where he was. I was glad to see him feeling so well today.

The second thing that tickled me was the "baby bottle". I've had them before, and the nurses and physician's assistants always present them like they're on an infomercial. My favorite line is, "You can carry it around in your pocket." They actually tell you this with a big smile. Today, I was presented with the "baby bottle" after having received an IV drip of Ativan in preparation for my eighth lumbar puncture. Needless to say, I did think the nurse's presentation of the device hilarious. I'm sure she thought I was hilarious, in and of myself. Then again, she has to deal with people on Ativan all day long. I suppose it's like being a bartender and dealing with drunks. Well, after my lumbar puncture, I have to lay flat on my back for one hour. The doctor also recommends that you have a caffeinated beverage after the procedure. Imagine being slightly high from the anti-anxiety meds, lying flat on your back, trying to sip a coke from a bendy straw without spilling on yourself. No, I didn't let Chris take a picture. I did manage to spill on myself, though. :)

After an hour, the nurse turned me loose with the baby bottle. This was the first time that I hadn't finished one in the ATC unit, so it literally was the first time that I had to carry one around. It's slightly larger than an actual baby bottle and it's one of those things that are just awkward to hold. So, I suspended my disbelief and tried to put it in my pocket. As it turns out, you can do it. I looked like I was smuggling formula, but that was the least of my worries.

A side note to Laura and Kristin: Thanks for the Jerome sighting and sorry you had to deal with him. HAha.

I have started presenting new side effects to the chemo treatments. The neuropathy in my hands has spread to my feet. I have started a drug to help with this but it's hard to say whether I prefer what was happening before the drug. Before I started taking the drug, my fingers were numb up to the second joint and the numbness occasionally became painful. Since I've been on the drug for about a week, the numbness is much less pronounced, but has spread into the palms of my hands and the bottom of my feet. It makes walking a very strange proposition.

I still suffer from muscle atrophy. As Chris posted earlier, I can't step up onto a steep step. I almost didn't make it onto the bus because of this and it's only an eighteen inch step. We practiced climbing stairs and standing up from chairs without using my hands for leverage. It knocked the wind out of me, but it's a necessary evil. While I was walking around the clinic, I did have a moment where one of my legs gave out and I almost fell. I had spaghetti legs for the rest of the day, but managed to stay upright. I refuse to use a wheelchair. I will when I absolutely must, but being ambulatory is very important to me right now. It's one of the things that I still own.

My personal favorite side effect: my eyes going crazy. My eyelids have started to swell and my left eye feels raw. My vision is blurred and that's never a good thing. I'm supposed to stop my steroid drops today, but I have a feeling that that won't be happening. My ophthalmologist has been contacted and we're just waiting to hear what she has to say. I'm hopeful that if I do go temporarily blind again, it won't last as long as last time. The good news is that I still remember how many steps it takes to get to the bathroom.

Overall, I had a good day. All of my appointments happened on time and I managed to eat a really big lunch. This is a milestone, since a single serving of apple sauce makes me feel like I just had seconds at Thanksgiving dinner. That side effect is a mystery to the doctor. They haven't been able to figure it out, since my spleen isn't swollen. I have managed to lose twenty pounds since this all started and I still think leukemia is the worst diet ever.

Enough of my ranting. I hope everyone is doing well, and I miss you guys. Cross your fingers that we hear something about my getting a transplant soon so I can come home.

Happy Birthday Dixie! I wish we could have been home to celebrate with you. We love you and miss you alot!

Early Signs of Irritation

Day 68

Good morning everybody. Ann and I are currently sitting in the luxurious comfort of the MD Anderson Leukemia Clinic lobby. Ann has just finished her blood draws for the day and the samples were whisked by pneumatic tube to the lab, where it is being analyzed. When the results come back we will get to see Dr. Thomas to get the official word on where things stand with the chemo treatment.

It's funny sitting here and seeing all the new people who have come into the clinic for the 1st time as new patients. Some are trying to occupy themselves with small talk and reading or watching TV but they all look scared to one extent or another. Only 68 days ago Ann and I were in the same boat as all of these new people and I feel for them. In many ways the first few steps on this journey where some of the hardest.

Ann is having some difficulty today. She is having a good deal of trouble climbing stairs. This morning when we went to get on the bus to come here, Ann had to use both hands to pull herself up onto the bus steps. She says that it was awful, and she is concerned that she is having trouble with such a simple act.

Of more troubling immediate concern to me is her eyes. She says that the dry irritated feeling that happened after the Cytarabine in round 2 is starting to happen again. Her eyes are beginning to turn red and I have noticed some swelling of the eye lids. I hope that the new steroid eye drops will halt this but it's starting to look like they won't. Ann is irrigating her eyes with natural tears every 2 hours now, but things still seem to be sliding towards the "worse" end of the scale.

Update

After meeting with Dr. Thomas today it turns out that Ann's blood work shows exactly what she expected after round 4. Low counts all around. The only surprise was that her potassium was low for the first time. So in addition to a lumbar puncture today Ann needed to get a "baby bottle" from the transfusion unit.

This device is really a pretty neat little piece of work. It's designed so that the patient can be infused through there IV with out having to have a pole for a gravity feed or a pump. The fluid is held in a elastic balloon, which is connected to a plastic tube and a small valve. When the valve is opened the pressure exerted by the balloon, squeezes the fluid through the tube and into the patient. It takes about 5 hours but it kept Ann from spending that time waiting in the transfusion unit.

We tried to get a follow up at the opthalmology clinic to have her eyes checked. Unfortunately the Doctor that we needed to see had finished her clinic by the time we managed to get in. So it looks like we will have to make a separate trip to MDA tomorrow or the next day. I have decided to step up the irrigation of Ann's eyes with natural tears to every two hours, instead of four, until we have a chance to have her checked out again. It's not a perfect solution but it's best I can do right now.

Update

One more update for tonight. I forgot to add that the National Marrow Donor Program (NMDP) has asked Ann to become a national focus patient. Thats a person that they structure marrow and stem cell donor drives around for minority communities. This is great news and we have gotten our first contact from the media seeking to publicize Ann's story!

Day 67

Sorry I haven't posted, but my counts have been down and it's hard to stay awake. We had the weekend off and there are no appointments scheduled for today. I have lab tomorrow and a doctor's appointment right after, followed by another lumbar puncture. It should be a very long day.

The only excitement that I can report is that a water and sewer main broke right outside the apartment. The water's been off for a few hours, but I hope that it will be taken care of by tonight.

My neupogen shots started again today. It feels like there are tiny bugs crawling around inside my bones. I suppose this is the price you pay to get your body to produce white blood cells.

My eyes have started to bother me, but I expected that after this round of chemo. The opthamologist wants me to irrigate my eyes as much as possible to get the cyterabine out. I've been religious about my steroid drops, so we're hopeful that we can avoid the problems from last time.

I don't really have anything else to report. We'll post tomorrow as soon as we get back from the hospital. Cross your fingers. :)

Some Round 4 Pictures

Here are some pictures that Chris didn't have a chance to post while I was in for this round of chemo.

Out like a light.

My Nurse Hai, hangs the 1st bag of Cytarabine

I don't know what I was thinking, but Chris thinks its cute.

Thank You

Day 65

I wanted to take this opportunity to thank some very special people. I've been going to Premier Dental Care for the past ten years during which I've made some very special friends. Drs. Cyndi and Toi have very generously donated $10,000 to my medical fund and I will forever be in their debt. Thank you doesn't seem adequate. I am speechless and would have done a video blog, but I was worried that I'd cry so hard no one would be able to understand me. Thank you. I hope to be able to come home soon and thank you both in person. If there's anything that I can ever do for you, you only have to ask.

On another note, congratulations on the new addition. Considering the gorgeous gene pool she comes from, I'm sure that she's as beautiful as her big sister. We can't wait to see the pictures.

Finishing Round 4

Day 64

Everyone will be happy to know that round 4 is almost over and Ann is most likely going to be discharged from the hospital sometime tonight or tomorrow morning. Right now she is finishing her last bag of Cytarabine and has experienced only a fraction of the swelling and vision problems that she had the 1st time around.

At the insistence of the Nurses and me, Ann took a walk around the hospital floor today. Although the effort took a great deal out for her, she enjoyed getting to look around the rest of the wing. There isn't much to see except for the nice view we have of the adjoining hospital's helicopter pad across the street. Every now and then you see them either bring someone in or chopper them out. Whenever we see this Ann always comments that she hopes the tiny figure strapped to the gurney is ok, and hopes that they will make it. It's odd to hear someone so sick wish so hard for the welfare of someone she can't even see well enough to make their face out, but she does it anyway.

We still have not heard anything about the transplant and will keep everyone updated as soon as we do. Please say a prayer that a match unrelated donor falls out of the sky because we still haven't heard anything about the appeal for cord blood.

Ann wants to say some more later tonight when she gets out of the hospital and is feeling less tired.

Update

Sorry everyone... Ann wanted to make her own update to the blog today but, as she left the hospital her RBC and Hemoglobin numbers were low so she got very fatigued and was unable to. She promises that she will be on tomorrow and wants everyone to know that she loves you all and is thinking of you constantly.

Talking with Ann During Chemo

Day 63

Happy Times

First, I want to say that I absolutely love the comments. These go a long way towards cheering me up and giving me a good laugh. It's nice to know that you are all out there and it makes me feel connected. Thank you, thank you, thank you! If you're uncomfortable leaving a comment, but you want to talk, you can always email me. The address should be off to the side in my profile. I know it's in there somewhere, because I've received emails off of the site. Chris is the more proficient computerfile, I just make him fix things when I'm too lazy. :)

I was admitted to the hospital again and the room is comfortable and the staff is as always wonderful. I had lumbar puncture number 7 a few hours ago and we're hoping for the best. We'll keep you posted.

I will admit that I am worried about the Cyterabine. I didn't enjoy being blind and I'm really hopeful that with agressive steroid treatment, that we can avoid this side effect. Maybe I'll run into some well intentioned soul with a really great folk remedy that can cure this. Maybe it could involve something like possum urine and spanish moss. That would be fun. I'd have to insist that they try it first just to insure their level of commitment.

Seriously, I don't listen to these "well intentioned" people. I don't know what it is about me that makes these people single me out, but I do promise that I go deaf when they start talking. It's an art form. I do believe that I will start carrying around a roll of duct tape and a bulldog clip. Look out Magyver.

That's it for tonight. I'm feeling fine. Keep posting those great comments! It gets lonely in here and I love hearing from all of you!

Round 4

Day 62

My apologies for not continuing to update yesterday. Ann's laptop crashed just as we entered the hospital for round 4 and I spent lots of time yesterday getting it working again. At our appointment yesterday with Dr. Thomas, she decided to get Ann into the hospital early. Which was nice because we normally have to sit and wait two or three hours for admissions to process her paperwork and find her a room. This time was great, no waiting and Ann was in just after lunch time.

This round she is getting methotrexate and cytarabine again. The course starts with two bags of methotrexate, one infused over 2 hours and the other over 22 hours. Then comes the cytarabine and this time thee are some precautions in place. Ann is on high does steroid eye drops now, instead of after the cytarabine begins.

Later tonight we are going to try to link up a video feed to Ann's family in California specially for her Grandmother. This will be the first time in two years that either of us have seen her and we are both really looking forward to it.

Until then Ann is trying to rest as comfortably as she can. Her CBC numbers are beginning to fall as the methotrexate begins to take effect and they have started her on a new medicine to reduce the increasing numbness in her fingers.

I have been badgering her to try to remain as active, or as active as she can be while tethered to a 6 foot IV pole. Recently I got her a 2 lbs bar bell at Target so that she could try to do some upper body work in addition to taking short walks around the hospital floor. I'm not sure how "into it" Ann is, before this she was much more of a walking/treadmilly type of girl. But it's good to at least see her try.

We still have no word on the status of the BMT, apart from the fact that it must happen. The Stem Cell Transplant Clinic staff all know me by sight now and are all able to discuss Ann's case without referring to files or notes. I'm positive that they are as dialed in as they can be and will let us know the very moment they know something important.

Ann is fighting to beat this disease and get a second chance at life but, you can help. If you can make a donation please do. The link on the side of the page will take you to her NTAF medical fund. Just follow the link at the bottom of her patient site and look for "Ann Gregory" in the list of patient names. It's non-profit and taxdeductable and you are helping to save her life.

If you can't afford a donation then please tell someone about her and her struggle. Tell your Church, tell your Family, tell your Friends.

If you are or know someone who is mixed race Asian, please ask them if they are a marrow donor. Heck, even if you don't know them, walk up to them and ask. If they aren't then ask then to give the gift of life. Asians are only 6% of the overall marrow donor database and there are lots and lots of people who are in situations just like Ann who are fighting with everything they can to live!

Beware the Well Intentioned

Day 61

Being at MDA is sometimes like I imagine being in jail would be. You are surrounded by three types of people generally speaking, Staff, New Patients and Old Patients. Replace the word "patient" with "inmate" and you have an institution. Most of the older patients (older as in more experienced) are exactly what you would expect from people who have been locked up in a institution for years. Like jailhouse lawyers they are always full of what they imagine to be helpful advice.

For example while we were in to do blood draws this morning we ran into a older patient who had come into MDA originally to be treated for lymphoma a year or more ago. The lymphoma went into remission but she developed leukemia as a side effect of the chemotherapy. She zeroed in on Ann and proceeded to strike up a conversation with her.

Well not so much a conversation as a list of things that she needed to do. Everything from putting our story on the Internet, to questions to ask our Doctor, to what type of letter to write me if she dies. Cheerful is not the word I would use. Needless to say I terminated the conversation as quickly as possible with this "helpful" soul.

But she is not the only one. MDA is literally choked full of these well intentioned meddlers that lie in wait for the unsuspecting to accidentally make eye contact or worse utter a friendly greeting. Once they are engaged they can do enormous amounts of damage before you can get away from them.

For example:

Busybody "What type of leukemia do you have, Deary?"

Ann "ALL t(4;11) positive."

Busybody "I haven't heard of that one. I have <insert horrible disease here>."

Ann "me too and they have to use <insert medical treatment here> while I'm in treatment."

Busybody "Oh no dear! You can't let them do that to you! My friend had that done and she never got any better. What you need to do is <insert stock advice about medicine, prayer, money ect>!"

See what happened? Older Patients (and some Staff ) pass off rumor and anecdotal evidence as actual tested scientific or medical knowledge. MDA's clinic structure actually encourages the spread of this type of disinformation, by packing large numbers of idle patients together with little to keep them occupied. I'm not criticizing MDA in this, it's hard to imagine how they could alter things in order to prevent it. in fact they do just about everything in their power to avoid it.

But a word of cation to anyone who is ever diagnosed with cancer, or has a loved one who they escort to a cancer center - don't ever listen to anyone but your Doctor.

More updates later today

The Eve of Round 4

Day 60

We are getting ready for Ann to go back into the hospital tomorrow for the 4th round of Hyper CVAD. I hope that this one is her last and that everything is worked out so she can be moved to pretransplant. This round she will be getting Cytarabine again so I am anticipating that her eyes will be torn up once again for a week or more. They are going to be starting her steroid eye drops earlier this time, but Ann's reaction was so extreme last time that I don't think it will make much difference.

Ann managed to help me fold laundry today much the effort left her drained and she needed to take a nap afterwards. I know Ann is anemic right now because of the cumulative effect of the chemo, but it still bothers me to see the evidence of it with my own eyes. Tomorrow we are scheduled to get more blood work and labs, and I am pretty anxious to see what the numbers say.

It may seem strange but there is a certain amount of comfort in knowing what the blood test numbers are. They offer me a measure of security that I took for granted before she got sick. Are Ann's platelets low? If so I know to be extra careful with her because she will bruise easy and I need to be ready to catch her if she falls - she might get cut and bleed badly. What is her ANC today? If it's low I know that I should only allow her to eat foods that have been canned or can be prepared very simply. Not knowing those numbers drives me nuts...secretly because they are my sentinels that will sound the first warning if the cancer begins to muster it's strength again.

Hard to belive that we have been doing this for two months now.

Day 59

Chris asked me today if any aspect of this experience is making me uncomfortable. I honestly know what he was asking, but all I could think was I can't believe that I may die because I can't receive treatment. That was the one thought that came to mind and maybe it's strange that I could associate that thought with being "uncomfortable."

At the onset of this entire affair, I never once thought that I'd be racing around a building in a wheelchair because I was too weak, or too tired, or my joints hurt too much to walk. During my first week here I had to start using a wheelchair because I was too tired and nauseated to walk unassisted. I had no idea that you could lose so much muscle tone in one week. It literally took me 15 minutes to walk 100 feet from the end of the hall to our temporary apartment. I can't imagine how many miles I walked in a regular work day, or the number of times I had to climb a flight of stairs. I can barely make it down a single flight without stopping and leaning on the banister every few seconds. Sometimes I catch myself shuffling instead of walking and I have to make a point of picking one foot up and placing it in front of the other. I never thought I'd have to make the conscious effort to walk.

I never thought that I'd be taking a bus to the hospital almost every day to receive treatment. We're lucky in that the complex we're living at charters a bus to MDAnderson Monday through Friday. You purchase tokens and are guaranteed a ride from 6:30 am until 7:30 pm every half hour. You start to recognize other patients and they recognize you in turn. I never thought that I'd be making cancer small talk with other people on a bus. It's just one of those random things that never occurs to you.

When Chris and I first started going to the Leukemia clinic, we'd notice certain people. I'm sure we were also noticed. We'd see the same people every week. They'd be sitting in the exact same spot in the waiting room, like a high school cafeteria. We started to learn the people who had been coming for a while and who were new like us. I start to get worried when I don't see someone for a while. You start to take a certain comfort in seeing familiar faces and knowing that these people are moving along just like you. There are a few missing faces that we wonder about, but then there are a few that have moved on to BMTs and are probably in isolation. I've started to notice newer patients observing us like we used to do to other patients. I wonder if I should just walk up and talk to them, or if they'd rather be left alone. On most days I'm not feeling up to a full conversation and it can be a little difficult to understand me when I'm wearing a mask.

I never thought I'd have to rely on a piece of engineered paper to protect me from the microbes floating free in the air. Chris is militant about me wearing a mask when I'm in public. I absolutely do not mind. I find it hard to believe that more patients don't wear their masks in public. Things that I could fight off could kill me now. In the past, if I got a tickle in my throat, I'd go in and get an antibiotic and that would be the end of it. Now I have to take antibiotics and antivirals just in case I might contract something. I can't walk around in bare feet just in case I step on something. It's disturbing to think that I used to check the mail in bare feet or flip flops.

I can't believe that some of my conversations start with, "Do you honestly think the insurance company thinks implanting my ovaries in my arm isn't experimental?" There are about a thousand medical procedures that have been lobbed around since I started receiving treatment that I had no idea existed. I've learned the difference between "standard of care" and "experimental". Standard of care is receiving a proven treatment. Experimental is receiving treatment that hasn't been extensively published. Organ transplants are now standard of care in most instances. This wasn't the case ten years ago. Maybe I'm making that up, or I'm just hoping really hard.

On a happier note, Dixie is feeling better. I won't be reassured until we know what's going on, but I'm encouraged that she's eating and her cough doesn't sound quite so horrible. We don't have any appointments on Monday and my fingers are crossed that we don't have to go to the ER for a transfusion. I'm pretty sure that I'll be going into the hospital Tuesday night for chemo round four. We'll keep everyone posted.

Tonight's Video

Day 58 (Part 2)

We wanted to do a short video tonight to preview what was happening next week, and to say a very heartfelt and special thank you to an old friend for his overwhelming generosity. George, Ann and I are forever endebited to you and your Wife for your help.

Thank You!

Day 58 (Part 1)

Today has been a very emotional day. There were no appointments, but we did talk to quite a few people. The only thing I have to say today is this: For as long as I shall live, I will never be able to count all of my blessings. For as long as I draw breath, I will never be able to say enough thank yous to all of the many people who have come together to save me.

Ann's Medical Fund

Day 57

As I start off today's post I would like to say hello to all our new readers that have been linking in from the Baton Rouge Advocate's website. When we started this blog the intent was to inform Ann's friends and family what was going on with her from day to day, we never imagined we would reach such a wide audience.

The reason I'm using a picture of Ann at Jackson Hole, Wyoming in this post is that Ann had no appointments at MDA today. Well, that and honestly it's nice to remember happier times when words like cancer, chemotherapy and leukemia were foreign to our vocabulary. At least for a few minutes anyway.

Ann spent most of the day practicing her knitting and taking pain meds. Meanwhile I was running around MDA trying to take care of a few essentials.

As most of you know we are having problems with our insurance company. They do not want to fund a Umbilical Cord Stem Cell Transplant because they believe that it is an "experimental" procedure and thus is not an allowed benefit. The insurance company was perfectly willing to allow Ann to have a BMT if the source of cells was from an adult donor, but unfortunately because Ann is mixed race no such donor exists. Also the leukemia is expected to relapse in the next few months. So Umbilical Cord Blood, which is quickly available is Ann's last and best chance to be cured.

We have placed our entire faith in the Doctor's and staff at MDA to write and present our review to our insurance company. However the risk to Ann is too great to allow her to be lost in a tug of war between the insurance company seeking to reduce costs, and protect it's share holders and MDA seeking to give her the best care possible.

Today I have established the a Tax-deductible, non-profit medical fund through the National Transplant Assistance Fund (NTAF). The NTAF is a 501c3 organization in good standing that provides fundraising assistance to people with catastrophic illnesses. Any money donated to the fund can only be used for medical expenses.



Please visit the NTAF Southeast Bone Marrow Transplant Fund in Honor of Ann Gregory and make a donation that will help save Ann's life. Our goal is steep but anything you can give will bring Ann that much closer to a second chance at a beautiful life.

Interview with Ann

Day 56

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!