Sunday, September 30, 2007

"eating at the grown up's table"

Day +123

Yesterday was very special because we finally got to meet Paige and her Boyfriend, Jordan. I can't tell you how exciting it was to get to meet them in person. Unfortunately I forgot my Treo doesn't have a flash on it so I missed the opportunity to get some pictures at dinner.

We followed all of MDA's rules for transplant patients eating in public. We arrived well before the rush and asked to be seated well away from any crowds. Luckily for us Flemings was just about deserted at 5 and once I explained Ann's condition they went out of their way to look out for us.

The only part of the night that really made Ann sad was that she will have to wait two years before she can have a rare steak.

Me and Ann


Paige and Jordan


Paige, Me, Ann and Dixie

Friday, September 28, 2007

It's a boy!

Day +121

I got some early morning good news from my PA at MDA. My FISH test results had finally come in and there was no sign of my original marrow and there was no sign of cancer. Hooray! I'd been secretly dreading this call because I had just about convinced myself that the cancer would come back. I blame the change in hormones for my freakish behavior this week. Again, poor Chris and Dixie.

Here's the fun part. My chimerism test results were also in and because there is no residual "me" left, my genetic profile looks like my donor's. You got it, sticks and snails and puppy dog tails. My donor was a boy and so, if tested, my profile will be "male". It's a little hard to wrap my head around. When the original transplant team was trying to explain the phenomenon to me, I was so lost in chemo dyslexia, I couldn't comprehend. Seriously, a two year old could have taken me at tic-tac-toe.

When you're transplanted with umbilical cord blood, the theory holds that you want to use the opposite gender as a donor. It's pretty much a guarantee that the new immune system will go after the old one. It's also a quick and dirty way to track engraftment. If I'd shown up as a girl on paper, they'd have known something went wrong. I plan on having a few questions at my next MDA visit.

Chris keeps asking me if I feel an overwhelming need to belch, fart, and scratch at inappropriate times. Not so much. I do promise to share if the burning need to act like a boy comes over me.

So, good news all around. I'm cancer free at the moment. I can fulfill my dream of going on an international crime spree--handy to be a boy on paper. Still getting over the sore throat, but I'm sure that's going to be an ongoing thing. For once, I'm at a happy loss.

Thursday, September 27, 2007

Day +120

I had my weekly checkup today and all is well. Dr. Bienvenu is on vacation, so I saw his nurse, who immediately puts me at ease. Today, she walked in and announced, "Your white cells are at 78,000." She was smiling when she said it, so it took a minute for my brain and my mouth to connect. 12,ooo is the high end of normal. 78,000 is cancer. I think Chris' exclamation of "What!" made her realize what she'd said. My WBC was 7.8. She just misspoke and we all had a laugh about it. My RBC and hemoglobin are down from last week. I'm just shy of normal. My liver enzymes are way up, but the team thinks it has to do with the antibiotics that I've been on. I seem to recall it happening before for the same reason, so I'm not worried. I have another visit scheduled next week and then the week after, I'm at MDA. Hello chemo! Worst diet aid ever. On the positive side, my skinny jeans fit. :)

Now I have a favor to ask. Almost a year ago, I began corresponding with a local woman who had undergone a BMT. I was really looking forward to meeting her when we moved back and became a little worried when I hadn't heard from her in some time. Her husband recently got in touch with me to let me know that she had pneumonia and that one of her lungs has a hole in it and had recently collapsed. She's in the hospital now and her lung collapsed again over the weekend. The doctors can't go forward with her treatment until the hole in her lung is healed. Please pray for her. It brought me a miracle and I'm praying for one for her too.

Chris is off at an interview and Dixie's at work. The cats don't qualify as chaperones, so I'm stuck in the house. I'd probably go out and buy copious amounts of candy that I wouldn't eat. Maybe some ice-cream. My dentists would have their work cut out for them if the baby stem cells got everything they wanted. That's all I have to say, and quite frankly, I'm glad. No bad news and boring makes for quite a happy lifestyle.

Wednesday, September 26, 2007

Day +119

The last few days have been bizarre healthwise, hence the lack of posts on my end. My fever finally broke and I managed to stay fever free all day yesterday. The lymph node is nearly gone, but still tender to the touch. I'm sure that it wouldn't be so uncomfortable if I'd stop checking it every 15 minutes. Paranoia is your copilot sometimes.

I did check in with my doctor at MDA on Monday, just to let her know about the lymph node. Her PA called me later in the day with a laundry list of questions that all tie back to symptoms of relapse. Example: "How big was the node at its largest and today?", "Any night sweats?", "Diarrhea? How many times a day?", etc. The answer was yes to the "BIG" three. That's when Toby's voice changed. That's when I started having an internal melt down. I woke up one night with spots all over my t-shirt and an overwhelming hot feeling. Check to the night sweats. Swollen lymph node, check. I take close to 4500 milligrams of magnesium a day, so draw your own conclusions about my potty issues.

I volunteered to go in for testing. She told me to wait until she called me back. At no point did she hint that I might be relapsing. She was always reassuring. It was just the voice. I could almost hear her thinking as she spoke to me. I know that there are alternative reasons for my symptoms. Night sweats come with fevers sometimes. Swollen lymph nodes occur when you have an infection. You already know about the magnesium.

She called me back a little later and told me to wait a week, then call to talk about what had been going on. There was no cause for concern at the moment. Too late. I was climbing the inside of my skull, worried that something I had done had caused a relapse. You can imagine Chris' face.

Here's where things began to take a little twist. Right before my transplant, my digestive system effectively shut down for whatever reason. My abdomen became distended and I wouldn't eat or drink because it was so uncomfortable. My "fat" shirts were too tight. I was prescribed Enulose, which could masquerade as liquid candy corn with a very slimy consistency. It took 6 doses over 18 hours to work, but it eventually did.

Monday night, the same thing happened. I wasn't digesting and I was miserable. Tuesday, still the same. It's much better today, but I still haven't eaten anything, so I may be jumping the gun. I still look like I swallowed a small melon versus the whole fruit truck. I'll see my local oncologist tomorrow and I'm sure we'll discuss all of the fun that I've been having this week.

I finally started sleeping again, so I'm less cranky than normal. Poor Chris and Dixie put up with a lot. I just took my last Cymbalta and the Lupron shot should be wearing off in the next few days. Something tells me that I'll be having some pretty crazy mood swings over the next few weeks. I did finally fold the laundry (Sorry Nancy, it had to be done. I could have planted a flag in it and called it Mt. Cheer). Chris helped.

I'm off to try eating something solid. Wish me luck.

Sunday, September 23, 2007

Day +116

Woo hoo, posts 4 days in a row.

My fever has stayed between 99.1 and 99.5 all day. When I first woke up, it was 98.7. Maybe tomorrow it'll cooperate and stay closer to normal all day. My throat continues to bother me. It has become that continuous sore feeling that signals that you're close to the end. The node continues to shrink, but remains tender. Thankfully, those are the only complaints that I have.

There is very little to report for the day. I didn't fold the enormous pile of laundry on the bed and the cats avoided me for most of the day. There is a me sized divot on the couch from lounging all day. I got to eat dinner in my pajamas once again and seriously considered taking a few naps.

I did manage to eat a full dinner and that's good news. Dixie taught Chris how to make tarragon chicken and it turned out really well. Dixie even managed to convince Chris to let me have beets. They were from a can, but she made a vinaigrette that helped disguise that fact. Chris still has an aversion to feeding me root vegetables. He's worried that they may retain something that could harm me even after washing. He quoted some statistic about some fungus being able to survive extreme heat. I suggested that he use a creme brulee torch to singe the outside of the vegetable before washing it. I don't think he was amused. I'd sell blood for a fresh yam. Not that you'd want it.

That's about all that I have to write about. Chris wanted to post the tarragon chicken just in case anyone wants to try it.

4 cloves of garlic, minced
1 shallot, minced
4 boneless skinless chicken breasts, butterflied
kosher salt to taste
pepper to taste
tarragon
1/4 cup heavy whipping cream
1 tablespoon of butter
1 teaspoon olive oil
2 tablespoons of water
juice of 1/2 lemon
Rub the chicken breasts with olive oil, then season with salt, pepper, and tarragon. Saute the chicken breasts in olive oil until cooked through. Remove to plate. Add shallots and garlic to the pan. Saute until the garlic is light golden brown. Add the butter, water, and cream. Stir until heated through and blended. Season the sauce to taste with salt, pepper. Add lemon juice and stir in. Place chicken back into the pan, being sure to coat both sides with the sauce.

There you have it.

Saturday, September 22, 2007

And it goes on

Day +115

As you all know, I've been under the weather for the last week. I'm sure this is going to affect this post. I may ramble, or keep it short and sweet. I haven't decided yet.

My temperature has hovered around 100.3 all day and I'm starting to feel a little congested in my sinuses. The antibiotics that I'm taking make me feel worse and spend most of the day feeling nauseated. Luckily, I still have my anti-emetic medication left over from chemo. I thought those days were over. My throat still bothers me when I swallow and last night I found a swollen lymph node on the side of my neck. This scared Chris to no end.

The first "obvious" symptom of my leukemia was a single swollen lymph node on the back of my neck. I've reassured Chris that this doesn't feel the same. Sometimes lymph nodes swell when you have a sore throat. I'll admit that I did a thorough check of all of my other nodes just to be sure. The swelling has gone down significantly, so I'm trying to keep it all together.

Because I'm not feeling so hot, I've lost my appetite; or rather, I lose it after I start eating. Dixie calculated that I'd taken in around 1000 calories today. I think it was a little more. The nausea doesn't help. Combine that with the Biaxin and there's no chance.

So, I've decided that I was asking for this virus. After getting released from 100 days of solitary, so to speak, I went a little crazy. We went house hunting several days in a row and for those of you that have done it, you know how exhausting it can be when you're feeling well. I wore my mask and didn't touch anything, but that's no guarantee. I can't remember how many houses we went into, but I do remember the one that smelled like stale mothballs and dog urine. Winner. Don't quote me, but I think someone died in there. Creepy. We kept waiting for the Scooby gang to come falling out of the ceiling.

I've decided to restrict myself, like I should have done from the beginning. Our friend Nancy advised me to take it easy. She should know, since she's 460+ days out from a transplant. I'm stubborn. I've heard it all my life and I still haven't learned. Next time, I'll listen.

Tomorrow will be a full day of temperature taking and food grazing. Maybe I'll fold some laundry. Don't get too excited.

Friday, September 21, 2007

Give me Fever

Day +114

Ann woke up today complaining of a slightly sore throat and she was running a low grade fever (>100.0 F). She has had a "tickle" in the back of her throat since Sunday, and we informed the transplant team at MDA and the local hematologist. Both seemed unconcerned and advised us to "wait and see". This morning I guess the bugs responsible for the "tickle" got the upper hand and escalated things into a sore throat.

Our local doctor phoned in a prescription for Biaxin to our local CVS. Which he felt pretty sure would take care of the problem. I was going to pick it up at lunchtime. However, by then Ann's temperature had jumped up to 100.9 F and I packed her up and headed for the ER in Baton Rouge. Back when we where at MDA the limit for going into the ER was anything equal to or above 100.5 F or 38.0 C.

So while I drove like a madman through the awful traffic on I-10, Ann was on her cell phone with MDA asking to page her doctor. The receptionist at MDA took down Ann's info but made a small mistake. She recorded Ann's temperature as 109.0 F not 100.9 F. So as we where pulling up to Our Lady of the Lake Ann got a call from her doctor at MDA who was "having kittens".

After a few tense moments Ann explained the problem, that her temperature wasn't really 109 and everyone claimed down. Dr. Kebriaei then told her that she didn't need to go into the ER and we should only worry about it if the fever escalates. She felt like Ann's condition was stable enough that we didn't have to play by the exact same set of rules that we did when we were isolated to the mile radius around MDA.

So Ann has dodged the ER for now, but unfortunately we had to cancel something we where really looking forward to. We had planned a meeting with our friends Ann and Paige at Flemings steak house tonight. That had to be axed, and it has made both of us pretty sad.
Ann was looking forward to smelling rare steak (she can't have it rare for a year), I was looking forward to eating one, and we where both excited about meeting Paige.

If you don't remember Paige then let me take you back a few months. We had an interview with the Daily Reveille (the student newspaper of LSU) and Paige was one of the thousands of people on the LSU campus who read Ann's story. She didn't know either of us but decided to do something.

She formed a facebook group and solicited donations by asking for a single buck per person. The group quickly swelled to almost four thousand people. Under Paige's leadership they where quickly organized and focused on raising money and pressuring Ann's insurance. Ultimately Ann's insurance did allow the the cord blood transplant, so the group moved on to other activities. Paige was instrumental in helping run the blood and marrow donor drive on the LSU campus that set records for the amount of blood and platelets donated.

I really hope she understands and will give us a few days to get Ann's fever under control. It was a real disappointment not getting to meet someone as awesome as Paige tonight. However, we have been waiting months to meet her, and we can wait a few days more. I just hope we don't disappoint her.

By the way as of writing this Ann' s temperature is 101.3 F.

Thursday, September 20, 2007

Normal Counts and Emmy Nominated?

Day +113

WBC 7.2 K/uL
RBC 4.0 M/uL
HGB 12.1 G/dL
PLT 331 K/uL

Ann had her second appointment with her hematologist in Baton Rouge today and it turned out to be a bit of a surprise. As you can see from the results I posted above, all of Ann's blood counts are now "normal". Our local hematologist even confessed that Ann had the "most normal blood of any of his patients" that day. The Baton Rouge clinic doesn't track the absolute neutrophil count like MDA does so I'll have to leave that off for now.

I have to confess it was a bit of shock hearing that all of Ann's counts were normal. We have lived with horrible CBC numbers for the last year almost and you just get used to seeing low RBC or hGB numbers. I don't want to give anyone the wrong impression though. I love Ann and believe in her more than anyone else in the world. So now that the baby stem cells are part of her too, then I will have to believe in them just as much.

OK so on to the other shocker.

Aficionados of our little blog will remember way back when we were trying to get approval for the transplant that we found it necessary to take our story to the media. We in fact did a story through KHOU 11 in Houston that our friend Tina was instrumental in setting up.

The story was done by a very professional and outgoing reporter named Lee McGuire. He was so charming in fact that most of the filming and interview was over before we even realized that we were on camera. Lee emailed me the other day to let me know that our story was nominated for an Emmy. How crazy is that?

Me and Ann were floored when we found out. All we can say is "Wow"! We hope that it reflects well on Lee for being a consummate skilled professional. Also we hope that it helps someone out there who maybe found themselves in similar circumstances. Most of all, we hope it raises awareness of the lifesaving nature of umbilical cords in combating cancer in adults. Especially in Asian Americans who only make up about 6% of the National Marrow Donor Program's database of available donors.

I really believe from the deepest part of my heart, that if KHOU 11 had not taken the time to tell our story, then Ann would be dead right now. I don't know if the story "won", but just being nominated must mean something. So I hope that their hard work is rewarded.

These are not the only people who helped lift us over that period of trouble when it looked like me and Ann were trapped in the darkest corner of the universe imaginable to be sure. There are so many people who played pivotal roles. Without you, we wouldn't have had the small glimmers of hope that helped guide us to were we are now.

Thank you

Tuesday, September 18, 2007

Electrical blackhole

Day +111


Chris' Birthday Card....love that little cat!

I've been trying to post for the past 3 days to no avail because of the hideous internet connection. We spent the last year tied to a computer for everything that we needed and to suddenly find myself without access is a little strange. I'll persevere, or I'll have DSL installed.

I've had a sore throat for the last three days and it is completely my fault. For some reason I thought that I could just jump in and resume parts of my life. I spent two days outside with Chris looking for houses. Everyone kept asking me if I was okay and I thought I was. I woke up the next day with a scratchy throat which got better as the day progressed. Now it is static and I'm mad at myself for being so careless. I wore a mask and didn't touch anything, but I pushed past limits that I've been warned about.

I'm taking it a bit slower and listening to all of the advice. My cymbalta is being tapered off. So far so good. My neuropathy has disappeared. I've been warned that it could return after the cymbalta leaves my system. I'm just happy not to have to take another pill.

I'm still not sleeping and this is starting to bother me. I average about 5 hours a night and after a solid week I'm super cranky. I avoid naps during the day just in case and no caffeine after 3. I keep thinking that I'll just fall asleep after a long day.

I got to celebrate an important milestone yesterday. It was Chris' birthday and I baked him a cake. After my diagnosis, I thought I'd be lucky to spend one more year with him. I plan on taking full advantage of this second chance and staying around to harangue him for the next 50 years. We had a quiet family dinner and he got to enjoy being home.


Chris' Birthday Cake

Chris' Mom Dixie

"I made it all by myself!"

Happy Birthday


The cats are finally settling down after our reintroduction. My black and white cat has adopted Dixie and hisses at me everytime we run into each other. He used to follow me everywhere and demand to be in my lap whenever I was sitting. Funny how things change. Chris's cat has adopted me--I think it's because I know where the food is. Our cat Squeeze is recovering from a viral infection. I was worried that we'd loose her. She's slowly putting weight back on. Then there's Pez. This is Dixie's cat and she is one of the most interesting cats I've ever met. We call her the crazy muppet.


Pez the Cat aka "Crazy Killer Muppet"

Squeeze the Cat

Jay the Cat aka "Bunny Cat"

We have another appointment with Dr. Bienvenu on Thursday. Blood counts and maybe an explanation for the sore throat.

Friday, September 14, 2007

Sorry about the infrequent posts this week. Our net connection is as bad as our cell signal these days. Let me catch everyone up on what's been going on.

My last appointment with my transplant doctor was September 5 and our schedule was pretty tightly packed. I received some surprise news that made me rethink a few things. My interim transplant doctor forgot to mention that I'd be receiving 6 more intrathecal chemo treatments. This is the procedure where they numb a small spot on my back and insert a needle into my spinal column. I get a dose of chemo pumped into my spine and brain. My doctor is just being conservative with my treatment. It's like a small insurance policy in case some small portion of my disease or a tumor has taken root. It happens all of the time. We've met patients with central nervous system involvement and it's not pretty. Each month, I will receive another treatment until my course is finished.

So, to clear Chris's good name, it wasn't the candy bar that made me sick. It was the chemical soup that my brain was swimming in. It's effects are just now wearing off enough for me to feel "normal". I've been foggy and frustrated for the past week for lack of ability. I couldn't think straight and I couldn't hold a decent conversation. Writing took forever because I kept transposing letters and words, or I would get homophones confused. (Right, write, etc.).

My cough continues intermittently. Always when my allergies are acting up. I've started taking a decongestant at the recommendation of my PA. It's helped tremendously. It also keeps me up at night if I take it too late. One more pill to add to the brood.

I saw my local oncologist on Thursday and he was very positive. My numbers are near normal. I feel well most of the time. I'll see him once a week until I'm told otherwise. I'll report to MD Anderson once a month until told otherwise. "Otherwise" seems like an awfully long time. I'll tentatively start an immunization program after my one year transplant anniversary. These are supposed to continue over the course of two years. It'll be like I'm a new born trapped in an adult's body. I can't have a glass of wine for another year. No steak like I like it for two years or so. Big deal. At least I'm still here.

Still no results on my FISH tests. My PA called and told me that it might be the end of the month before it comes in. Chris is anxious about this. It is what it is and getting the results sooner rather than later won't really make a difference, so to speak. We'll have to wait and see.

Tuesday, September 11, 2007

Baby Steps

Day +104

The day before we left Houston, Chris called me from the road, worried that he'd lost his cell phone in the parking lot of the apartment complex. He asked me if I'd be comfortable going out to look for it. I instantly said yes, thinking that it wouldn't be a big deal. It would be my first time out alone. As I stepped outside, I was confronted by a swath of grass covered in pigeons and squirrels. It stopped me in my tracks. I couldn't believe that a bunch of birds and a handful of rodents were intimidating me so badly. I had to walk through them in order to get to the parking lot. I kept telling myself that they would scatter as I walked towards them. They all seemed to stop and turn toward me in unison. One squirrel began to twitch in my direction. They didn't budge. I started stomping my feet to make noise and they still wouldn't move. I finally had to bolt past them and into the parking lot. I'm sure I looked like a complete nut and to boot, no phone. Chris thought the menacing squirrels were hilarious.

I managed to scare Chris these past few days with a persistent cough. I've gone through this a few times before at MD Anderson. I cough at night because of post nasal drip. I've had several throat swabs and nasal washes because of this. Each time, they come back clear, but you have to be vigilant. A small cough could be pneumonia or something worse. Poor Chris is on pins and needles everytime I sniffle or clear my throat.

I can feel the difference between allergies and something else. On the other hand, I did go into the hospital for a week for a UT infection that I didn't have symptoms for. I know that I have to take extra precautions and sometimes I get so complacent, I forget. My allergies are in hyper-over-time thanks to the new environment. In addition to that, I'm back around my cats. I promise, I spoke to several doctors and nurses before exposing myself to them. I'm hoping that things start to even out so I can stop terrorizing Chris with my coughing.

Slowly but surely, I'm getting in touch with friends. I still have a long list of people to call and the cell signal in Denham Springs is horrid. My phone cut out 6 times on a very dear and patient friend before we agreed to try again some other time. I suppose I had to replace the road rage with something.

Chris and Dixie continue to introduce vegetables and fruits into my diet, which is heaven. Chris is worried about giving me root vegetables and I've been begging for beets and sweet potatoes. He's worried that the dirt left on them will carry something into the house that will compromise me. I understand this completely.

Monday, September 10, 2007

First Non-Houston Doctor's Visit

D +103

WBC 7.1 K/uL
RBC 3.54 M/uL
HGB 11.0 G/dL
PLT 296 K/uL
ANC 4.1 K/uL

Ann had her first non-Houston based Doctor's appointment today, and as you can see her blood counts still look good. We where actually not supposed to have this done until Thursday, but last night Ann developed a dry cough that continued through the night off and on. So this morning I called MDA and asked them for direction on reacting to it.

They told me to ask to move our Baton Rouge doctor's appointment forward and get her lungs x-rayed. MDA wasn't to concerned about it, but they just wanted to play it safe. In the past this sort of thing has been brought on by Ann's new post transplant super allergies. Yes, apparently after a transplant your allergies are magnified and you get brand new ones you never knew existed before.

It was a bit odd walking into the very same doctor's office today where our journey began all the way back in January. As we where called back into our appointment we passed examination room #4. The room where Ann and I sat in nervous laughter just before the diagnosis was delivered to us. I found myself wondering how many people had taken their first step of the journey by walking out of that door just like we did.

Ann got her chest x-ray and they turned out to be clear. I can't be thankful enough for that. The cough again has turned out to be post-nasal drip and she is going back on Claritin-D tomorrow. That along with the Flownase she is already taking should do the trick and dry her up.

Oh as a side note we found out what caused Ann to throw up the other day. The culprit turned out to be a Three Musketeer bar. I had gotten her one as a "treat" and it turned out to be just a bit too rich for her stomach. This has happened once or twice before when I try to introduce Ann to new foods, but I still feel like the worlds' biggest jerk and want to go hide under a rock out of guilt.

Ann will be blogging tomorrow and I think she is going to be taking about getting to see her Cats again. Thats all for tonight. Good night everyone.

Saturday, September 8, 2007

Day +101

I'm not feeling so hot today. Allergies are knocking me back and we got some bad news about another transplant patient that we've been keeping up with. Chris is worried since I threw up while we were driving through BR looking for houses for sale. I'm sure I'll feel better tomorrow.

I'm still a little shell shocked and numb now that I'm back. It doesn't quite seem real. More like the same routine in a new location. We're trying to get settled. Dixie's been very kind in letting us stay with her while we try to put things back together.

I'll have to be honest and say that I'm still a little gun shy after having been under lock and key for so long. Friends, I will be calling. (Scottie K., I haven't forgot about you. I promise to call. :)) Don't think that I've become a hermit, I'm just still out of sorts. Feel free to call me if I'm being a slow poke about it. Or there's email. Click on my profile if you need the address. I promise, you'll hear from me soon.

Friday, September 7, 2007

Homecoming (Part II)

D +100

Yesterday was a very full day and both me and Ann got pretty wiped out. Here are a few pictures from our last day at MDA.


This is a picture of one of the shuttle buses at MDA. The outside is decorated with art drawn by children in the pediatric cancer wing of the hospital. Of all the ones that we have seen this one was our favorite. Ann was just tickled to bits by the baby lions that are in the second and third windows. They are just unbearably cute and the sight of them would always brighten our day just a little.



We stopped in the leukemia clinic to say goodbye to Dr. Thomas, who we unfortunately didn't get to see. That was a little disappointing, but the visit was not a complete waste as we were surprised to hear "Hey there little lady" from a stranger in a cowboy hat sitting in the waiting room.

As the stranger tipped his hat, just like in the movies, we could see that was Mr. Clark who we had the pleasure of meeting before Ann went in for transplant. The last time we ran into him was months ago when he was roping fake calves in the parking lot of our apartment complex just as he finished his treatment for AML. Mr. Clark was in for his routine check up and he looks a thousand times stronger than he did a couple of months ago.


After saying our goodbyes to the kind and dedicated staff at MDA who helped save Ann's life it was time to us to leave Houston and return to Baton Rouge. Ann made good on her promise to make the drive herself. You may not be able to tell it from the picture, but Ann is super excited to be on the open road and free once again.

She did pretty well considering she had not driven on the interstate in almost a year. Houston traffic didn't phase her a bit, nor did the cruddy weather. Any after six hours of straight driving we arrived at the Mississippi River.

While Cake's Fashion Nugget played in the back ground the skyline of our home town gradually crept above the gray concrete and steel ribbon of the Mississippi River Bridge. We have driven I-10 through Baton Rouge almost everyday of our lives, but this time what was an otherwise mundane experience was enchanting. Ann remarked to me that she had almost forgotten that this place even existed.

When we finally arrived at my Mom's house it was turning dark and we had only enough energy to unpack our car, make a quick blog post and turn in for the night. i would have liked it if we had started the next day off full of energy and bounce, but no such luck. We slept until almost noon and I at least felt like I had been hit by a semi truck when I woke.

Shortly after waking up we received a call from the BMT Research Nurse at MDA. Which was a total shock, and we where half expecting to hear her say "Oops, we made a mistake. You need to come back to Houston". As it turns out all she was doing was calling to check in on Ann and see if we had made an appointment with our local Hematologist (we have).

She also had the pathology report from Ann's +90 day Bone Marrow Biopsy. It was clear with no evidence of leukemic cells. That doesn't complete the biopsy results because there is still a FISH test they are waiting on getting the results from California. Those should be in next week about the time we do our first appointment at our local hospital.

So to celebrate the good news, freedom and life in general I decided to to something special. Those of you who have not been "guests" of a large medical establishment for long periods of time may not be aware that the food in general sucks. It is bland lifeless slop, lacking in seasoning, presentation and imagination.

This is hardest on patients who have no alternative, but to eat what is put in front of them. Even more so BMT patients who are on restricted diets because of bacteria and molds that often get on fresh foods. So after almost a year of either eating out of cans or food from MDA's cafeteria I thought the best thing I could do was cook Ann a real meal.

I selected a southern classic, fried chicken with mashed potatoes and buttered peas. The chicken was marinated in butter milk for an hour or so then dry rubbed with spices. Finally it was dredged in flour and corn starch and fired in shortening. The potatoes where instant, but we are going slow getting of the low bacteria diet.

I think you can judge the results from this picture. I have not seen Ann eat with such enthusiasm since before she got sick.

There are a million things to do still: find a house, find a job, figure out insurance, worry about money...but right now it is just good to be home and to see Ann smile.

Thursday, September 6, 2007

Homecoming (Part I)

D +99 (Day 239)

Short update tonight because we are very tired.

Long story short we are back home. There is lots to tell but it's gonna have to wait until tomorrow.

Now we must sleep.

Good night everyone.

Tuesday, September 4, 2007

DAY +96 (D 236)

The blood draw went off without a hitch on Monday and I got some crazy news. Maybe just crazy for me. My hemoglobin is at 11.6. That's just a sneeze away from the low end of normal, which is 12. Chris keeps asking me how I'm feeling, the idea being that if my hemoglobin is almost normal, I must feel pretty well. Truth be known, I don't feel any different. My afternoon nap only lasted one hour yesterday, which is shorter than normal.

In the past, just before my transplant, my hemoglobin had to fall below 8 before I'd start to feel really bad. Immediately before I got diagnosed, my joints hurt, I would start to black out at work, it was hard to catch my breath and I couldn't eat more than a few bites before I'd feel extremely full. At the time, I was working a full time job, going to school full time, and taking turns with Chris caring for a very beloved cat (Max) who had a nasal carcinoma. Max couldn't eat on his own, so we had to come home several times a day to feed him through an esophageal tube. I just thought that all of the combined stress was causing my symptoms. A co-worker suggested that I was having anxiety attacks. I thought I was losing my mind.

One of the symptoms of leukemia can be a loss of well being. Whatever this honestly means, I don't know. I'll admit to thinking that I was depressed and burned out. Friends even suggested that I take a break from school. I even considered it, trying to rationalize it to myself. This was definitely not the way I saw it happening.

After all of the treatments and all of the drugs, I feel more like myself. I'm not 100% and from what I understand, I won't be for some time. I still have to worry about getting sick and I have to be extra careful around plants, animals, and children. Chris pointed out that walking through the lobby of MD Anderson was like a bad zombie movie for us. We're constantly ducking babies and small children, speed walking down hallways and hiding in corners until they pass. Chris started chanting brains like a B-movie ghoul. He is the king of the sillies.

We still haven't heard about the last handful of tests that I have to take, so this may delay us leaving Houston for a few more days. I have a few follow up appointments tomorrow and we're hoping to say good-bye to a lot of friends. For now, I'll just sit back and let things happen.

Sunday, September 2, 2007

DAY +94 (D 234)

I was so freaked out Friday, I realized there were several things that I forgot to mention. I know I've been going on about being ready to get out of here, but the reality of a gaggle of nurses singing "Hit the Road Jack" just didn't mesh up with the fantasy. (I have a lot of time on my hands.) I was also feeling high from the pain meds I took to deal with the ouchie from my bone marrow biopsy/aspiration. Funny how the little pink pills didn't zone me out during chemo, and yet now I feel like a zombie. I suppose it's six of one and half-a-dozen of the other.

I got the raw food thing backward. I can eat raw fruits and vegetables. I just have to incorporate them in over an interval of one month. The bit about raw foods applied to sushi and carpacio. Meats have to be cooked. I will miss sushi. California and crunchy rolls aren't the same. If Chris has his way, it's going to be a while. He did surprise me with a bag full of oranges the other day. They will be sorely missed. Melons are next on the hit list--baby carrots, too.

My magnesium dose has been scaled back by one pill. So, I'm just taking 4000mg a day. The average person only needs 400mg a day. 4500 mg were sending me over the edge. I had to plan my days around my proximity to a bathroom. Enough said. I suspect my doctor is still worried about GVHD. She wanted me to report the number of times the magnesium affected me a day. Good times. I can stop taking my Lyrica next week. We're going to check on the Cymbalta. So far, the numbness has disappeared. Now, the cymbalta is what completely eliminated the numbness to begin with.

For the last three months, I've started to suspect that I'm losing my mind. I've been having crazy problems with my sinuses and allergies. We've all suffered with them to some degree, but lately, I've felt awful. Friday, I got a sinus headache that was so horrific, I threw up. I felt better immediately, but none the less. My doctor asked me if I thought my allergies were worse now than before the transplant. When I told her that they were, she said that the immuno-suppressive drug that I was on was the cause. It appears that post transplant patients have severe allergies. Whoopee! Thank you flonase.

We got the preliminary results of my bone marrow aspiration Friday afternoon. I'm showing 2% blasts, which is in the normal range. We should know about the biopsy results on Wednesday. I have a blood draw Monday morning, to check on my magnesium levels. Then there's nothing on the schedule for Tuesday, which is a little worrisome. We still have to have CT and pet scans before I can be officially discharged.

We'll keep you all posted.