Wednesday, December 26, 2007

Day +211

One year ago today I was at work, feeling horrible and constantly out of breath. I thought that I was just having a hard time recovering from a case of strep throat in late October. I must have been out of breath because I was out of shape. Not so.

Christmas was particularly special this year just because I survived to celebrate it. According to the doctors, I would have been dead by now without my stem cell transplant. So, I am especially thankful to all of the people who came together and made this possible.

It has not been an easy year, less so for the people that had to watch me recover from this disease, I think. I've made it this far and I don't plan on giving up anytime soon.

My regular doctor's appointment was nice and uneventful. My numbers are excellent with a slight elevation in my platelets. Chris and I are still convinced that the winning cord belongs to a future stunt man. That kid is going to be a terror on the play ground. I'm waiting on the test results for my EBv count from last week. They should be back by now and I really hope that the elevation has been resolved. If not, then I'll have to contend with the thought of PTLD again. Rituxan's not that bad, but the thought of tumors growing all over me gives me the willies.

The GvHD is under control at the moment and I'm tapering off of all the topical steroids. I have a follow up appointment at MDA on January 2, so we'll be on the road again. I'll post if anything happens between now and then. Let's hope you don't hear from me.

Wednesday, December 19, 2007

Day +204

WBC 4.1 K/uL
RBC 3.74 M/uL
Hemoglobin 12.3 G/dL (woo-hoo!)
Platelets 402 K/uL
ANC 2.95 K/uL

Nancy, I'll trade you red blood cells for platelets and a small container of chocolate pudding.

I have to apologize for not posting sooner, but I was in a snit when we got home from Houston last night. The news I got was mixed and I could see that Chris was really getting worried over it and to add to all of this, we spent ten hours collectively traveling. So we were tired and fretful.

My blood numbers continue to be normal, or very close to. My magnesium levels are finally stable. My liver enzymes are another story. They were elevated last week--just slightly above the high range of normal. This week they were the same, more or less. Chris was hoping that the massive doses of anti-viral medications that I was taking the previous week were the cause. Guess not.

Dr. Kebriaei was cautious about what the numbers could mean and rightly so. It could be anything from medications to GvHD of the liver, or it could mean that the PTLD never fully resolved. The levels of Epstein-Barr virus in my blood were slightly elevated and this concerned my doctor. It's not a very good situation to be in since a wrong diagnosis could cause significant trauma.

The treatment for GvHD of the liver includes systemic steroids which would suppress my immune system further. This would give the EBV in my system a chance to flare up in turn bringing back the PTLD. The treatment for PTLD would be more rituxan, but if I really had GvHD of the liver, it would mean that the condition would get an opportunity to get worse while I was being treated for the wrong thing. I'm damned if you don't and damned if you do.

In two weeks, I'll return to Houston to be reassessed. I'm hoping that my numbers go back to normal and if not, I'm prepared to do whatever I need to.

The results from my lumbar puncture were in and according to my doctor, I have nothing to really worry about. Chris was hanging from the ceiling. The pathologist who looked over the sample found rare abnormal cells that were non-malignant. I've been reassured that with the number and frequency of lumbar punctures that I'm having, that this was bound to happen. Repeat after me: "Non-malignant." The explanation was that they were mis-shapen cells of no particular type. Okay. As far as I know, the cancer is still gone and my doctor wasn't fretful about it.

The dermatologist was very pleased with the way my skin has responded to the steroid cream she prescribed. The skin on my torso is almost normal and I hardly ever itch. I've been told to to reduce the number of applications over the next two weeks so that I don't thin my skin further. The skin on my fingers has gotten very thin and has split across every knuckle. It still beats being itchy and miserable. I've been advised that dry skin will be a way of life and that I must moisturize every day. I'm faithfully applying Eucerin and Cerave everyday, but I have to admit that I feel like a baby's bottom slimed with diaper cream. It doesn't help that the Eucerin cream is white and very emollient. Yum-yum. The Cerave is quite nice, though.

The opthomalogist has confirmed that I do have GvHD of the eyes. After performing a test where small strips of paper are left to hang out of my eyes she informed me that my tear production is normal and that my eyes aren't "dry" at all. It turns out that they are inflamed from the GvHD and that's the reason for my discomfort. I have to apply steroid drops everyday for a month and I also have to apply cyclosporine drops twice a day. To cap things off, there's an anti-biotic ointment that I have to put in my eyes before bed time.

Imagine it if you will, me trapped in my room, essentially blind thanks to the ointment and desperately trying not to rub up against anything because I'm slimy and sticky with moisturizers. It's really kind of funny when you get down to it. The cats take full advantage of my situation by taking turns rubbing against any exposed skin, leaving furry little tracks behind. It makes me crazy!

All in all, it wasn't all bad news, and if I'm very honest with myself, none of the news we received was bad. All of the doctors consulted with one another and concluded that I wouldn't have to go on oral steroids for my GvHD. That's a plus, and my eyes already feel better after just a few treatments.

We forgot to mention that we ran into a friend from leukemia last week. Mr. Clark of the tiny metal steer fame surprised us while we were at the stem cell clinic. We had the same leukemia doctor and would often entertain each other in the waiting room between appointments. We were surprised to find out that he was going to have a stem cell transplant and was in fact being admitted to the hospital that very same day. He's going to have the same procedure that I did with an expanded cord. Yesterday we got a chance to visit him in the hospital.

For once I didn't mind putting on a floppy yellow gown and gloves. He's in isolation because his marrow has been burned from his body and he has no immune system. He looked amazing and reported that he only had a few side effects. The transplant is scheduled for tomorrow and we're praying that it goes as well as mine did. I warned him to ask for extra blankets since the stem cells will be fresh from the freezer and pumped in cold. I hope we'll be able to see him the next time we're in Houston and it just made me happy to see him doing so well. As a bonus, we got to visit with several of the nurses that cared for me during my many stays.

I will always be grateful to the many people that cared for me and continue to do so while I recover from this. Just as I will be forever grateful for the many people that continue to encourage me and send they're prayers for good health. It means so much more than you will ever know.

Saturday, December 15, 2007

Day +200

I never thought this day would get here and now that I'm living it, day +200 doesn't feel like a milestone. My baby stemcells are about to celebrate their 7 month birthday with a renovation of their new digs. They've been harassing my skin, causing me to look like a plucked chicken from the neck down. The dermatologist literally told me that I had chicken skin. I thought this was hilarious and very concise. She prescribed a one pound jar of steroid cream, advising me not to use it on my face, neck, or groin. Apparently, the steroid cream can cause a thinning of the skin, which would be bad in these delicate areas. I have noticed after using it for a few days that the skin on my fingers has become thin and I have suffered a few uncomfortable tears in the tissue. I'll have to be a bit more judicious when I'm applying it. The resident who was also attending me advised that I use Cerave cream on my face. It's on order and should arrive in the next few days.

My eyes continue to be dry and sensitive. It's not horrible, but they constantly feel dry and uncomfortable. Kind of like facing a heavy wind for hours at a time with your eyes wide open. They look a little gray and bloodshot in addition to everything, convincing me that I have systemic GvHD. Luckily, my digestive system is plugging along, so maybe it won't be affected. I'm hoping that my liver enzymes go back to normal, because GvHD of the liver is seriously bad news. While I was in the hospital getting my transplant, two of my neighbors died from GvHD of the liver. Unfortunately, it's one of those organs that you can't live without. I should know on Tuesday. Houston, here we come.

On a lighter note, I got to be the designated caregiver this week. Chris had his date with the dentist on Friday and since he was suffering the effects of valium and halcyon, I got to call the shots. Those of you who really know me are probably cringing right about now, since you know my sense of direction is pooh and the idea of me navigating the skinny roads of Denham Springs probably leaves you in a cold sweat. Ha! It worried me too. So, at the peak of morning traffic, we set off for the dentist in BR with fingers crossed. No problem. I managed to get him to his appointment on time without running anyone off the road and as a bonus, I didn't get lost.

Poor Chris was scheduled to have a cleaning--his first in a very long time, 4 cavities filled and a root canal. He got a super surprise when he had to have an unexpected root canal bringing the total up to 2. I picked him up 4 hours later and he was definitely stoned. We sat in lunch time traffic for over an hour, seriously testing my charity towards the driving public at large. Road rage is my cross to bear. I'm working on it, I promise.

That's all of the excitement for this week. I'm starting to get foggy from the intrathecal chemo, so things will probably be quiet blog-wise until Tuesday.

Wednesday, December 12, 2007

I-10 to Houston and Chronic GvHD

Day +197

As per usual lets get the CBC results out of the way up front. We'll come back to them and talk about them later:
WBC 3.7 K.uL
RBC 3.48 M/uL
HGB 11.4 G/dL
PLT 333 K/uL
ANC 2.89 K/uL
This week was Ann's December follow up at MDA. So the day before yesterday we packed up the Saturn and headed out to Houston. As per normal I drove the first leg of trip and Ann was going to drive the return leg. After having done this about 8 times now the trip has almost become routine, and we thought it would be fun to share some of the more unique sites we have been seeing.
This isn't a usual site but it was just too good to pass up. As we closed in on this guy somewhere near Lafayette Louisiana, what was painted on his trailer made both of us do a spit-take and dive for our cell phones and struggle to turn on the cameras. It's not so clear in this shot...need to get a little closer maybe.

Yes! It's "The Bigfoot Hunter" himself! No doubt on his way to a "made for the Sci-Fi Channel movie" or a special for TLC or NGC. Practically every car on the road qued up beside this guy to point and laugh.
Next up in Beaumont Texas is a strange collection of metal palm trees that flash with strange, almost hypnotic neon lights. You would think from looking at them that they had been imported from Las Vegas, but you'd be wrong. There is a business in Beaumont that actually specializes in the manufacturing of these things.
Blast from the past outside of Beaumont- Yes it's a Stuckey's! These things used to be everywhere, and I do mean everywhere, before the advent of the superdelux truckstops of today that have hotels, garages, shopping centers, video stores and restaurants built on to them and look more like space ports than diners. Stuckey's holds a special place in my memory, because it was there on a family trip when I was about eight, at this corny little slice of southern Americana, that I first became aware of velvet Elvis paintings!

Last but not least We spotted this right outside of Winnie Texas and is priceless. If you find yourself completely lost while driving and happen across a sign like this, it's a safe bet that you can narrow your geographic location to the deep south. I've got no idea what "Gatorfest" is but your imagination is probably just as good as mine.

Suddenly before you know it the southern rural landscape that I-10 cuts through, turns into a spaghetti bowl of concert ribbons that leads to Houston. It's like discovering civilization again. Trip totals: 4 hours (give or take) and 289 miles.

At MDA Ann had her follow up with her transplant doctor and subject number one was her dry and itchy skin. Doctor Kebreai had begun to strongly suspect chronic systemic GvHD, based on the dry skin, bumps, occasional dry eyes, reduced white blood cells count and slightly elevated liver enzymes. Normally she would have treated Ann with oral steroids but because her symptoms were so minimal, she didn't want to jump to conclusions. So she set up a appointment with the dermatology and melanoma center.

There we meet Doctor Hymes who is MDA's expert on skin GvHD. She gave Ann the once over and made her diagnosis pretty quickly. Based on the dry skin, hive like bumps, little blisters, and alopecia she though it was a pretty clear but "unimpressive" case of chronic GvHD. Both Doctor Hymes and Kebreai conferred and agreed that they were not going to start with oral steroids until we return to MDA next week to see ophthalmology and give the liver enzymes a chance to return to normal. The liver enzymes could be due to an increased amount of Valtrex that Ann was taking through last week and over a week the medicine should have a chance to work it's way out. If not then it could be chronic GvHD of the liver as well.

So Ann's treatment, for the moment, is steroid creams and gels. They also halted the Prograf taper and have restarted her Anti-fungals. That suites us fine because oral steroids would mean immune suppression which could mean a chance for the PTLD to return. Once was scary enough thank you very much! Overall I think this is good news though. Transplant patients with chronic GvHD are statistically less likely to relapse and unlike Acute GvHD, chronic GvHD is usually a very treatable condition for most who have it. I'm also hopeful because the transplant team has remarked on how mild Ann's symptoms are, which implies that treatment could be mild as well.

I just hope the little baby stem cells know how precious and wonderful their new home is and take it easy while they are rearranging the furniture.


Since returning to Baton Rouge, Ann has started using the steroid cream and is very happy to report that her skin feels "so much better".

Friday, December 7, 2007

Day +192

I don't know why I feel compelled to write today as nothing has really happened today. Chris spent the entire day working on a consulting job that he picked up while he still looks for a full-time job. I've asked him to teach me how to do what he's doing while we both still have free time. It finally feels like I can wrap my head around something without getting too distracted by the details. I keep toying with the thought of starting a correspondence course just to keep on track with my degree. I've been reluctant because of the ever present chemo brain and I'm not sure how I'd be able to take the tests. The one other time I took a correspondence class, I had to go to a place on campus to take a midterm and a final. Maybe I'm just being a giant chicken.

There are two less pills in my pill case these days. I stopped taking V-fend on Tuesday and haven't spontaneously started growing mushrooms. This is one step closer to being normal. Prograf is next.

I've been speculating on my future without pills. Essentially, this should mean that my immune system is mature enough to handle day to day living. 32 years passed without me having to think about whether my marrow could produce normal, functioning cells. I'm afraid that I'll spend the rest of my life worried that I might make a misfit. If I do, will I be able to "fix" it? This is something that faces everyone in my situation.

I'll just keep taking it one day at a time, I suppose.

Thursday, December 6, 2007

Day +191

WBC: 5.0 k/uL
RBC: 3.82 M/uL
PLT: 384 K/uL
HGB: 12.1 g/dL
ANC: 3.7 k/uL

And there you have it, I'm normal. My red blood cells are still just below normal, but my hemoglobin is great. No complaints here.

Dr. Bienvenu immediately honed in on my little skin problem today. The good news is that he doesn't believe that I have shingles. He assured me that my blisters and rash don't look "right" for the diagnosis. He was also kind enough to prescribe something for the itching. Last night I thought that I was going to peel my own skin off. Patches of small blisters appeared on the backs of both hands and they were relentlessly itchy, even after applying cortizone cream. Before I went to bed I took a pill for nausea that contained benadryl. I just wanted some relief from all of the itching.

There's not much else to report. I'll continue to take the massive doses of anti-virals until I see my doctors next week. I'm looking forward to seeing the dermatologist. Pray for a concrete diagnosis. I'm convinced that I have a mild case of GVHD of the skin, but I have to convince the doctors of this.

Wednesday, December 5, 2007

Day +190

When will all of the excitement in my life end? Let me preface this post by admitting that I did break my own rule and let some pictures posted on the net scare the poop out of me.

I've had a small, dry cough off and on for the last few months and it's been driving Chris crazy. Every doctor that has seen me for it has come to the same conclusion: post nasal drip. Even I can feel it. With the weather being what it is down here, my allergies and sinus complaints flare up constantly. It was almost 80 degrees the other day, which aggravated my allergies and caused my cough to reappear. It went away after a day and I didn't think anymore about it. Two days later, it was 40 degrees which started the cycle all over again. My nose is runny and my cough is back. I'm fairly certain it will be gone in a day or two. If I could remember to do my Flonase regularly, it would be gone sooner.

Of course, a cough for a transplant patient could be a portent of something more sinister. Chris is on the look out for popcorn lung, which I can sincerely hope never to be diagnosed with. Now you have to consider my skin flare ups and combine that with the fact that I'm recovering from PTLD. Chris has done exhaustive research on this condition and occasionally, I'll look at an article or a photograph. The other night I read a few articles on lymphoma and PTLD and of course there were pictures attached. It's not the prettiest thing I've ever seen.

Last night my neck began to itch and when I reached up to scratch it, I found a small blister. Guess what some of the pictures related to lymphoma and PTLD of the skin looked like? Chris was ready to take me into the emergency room at MDA. He almost had my transplant doctor paged at home. He was talked out of it on the provision that I email my doctor describing my newest dilemma. I found a few more blisters on my collar bone, but the rest of me was all clear.

My PA called me first thing this morning. She was very thorough in asking about my symptoms and wanted detailed descriptions of the blisters. Of course I mentioned lymphoma in my email. I had broken a cardinal rule and self diagnosed. We've all done it at one time or another. I've been told that first year medical students are particularly prone to it. I can't remember any of my doctor friends doing it, though.

Dr. Kebriaei called a few hours later and spoke with Chris. He asked if it could be lymphoma or PTLD of the skin. She reassured him that it wasn't. If I'd honestly stopped and really thought about it, I would have known that it couldn't be either. My blood numbers are excellent and I generally feel really well. Every time that I've been diagnosed with something, I've had extreme symptoms and felt unwell on some level. I was tired and cranky yesterday and I think this is part of the reason I let myself panic. I really have to give my transplant team a lot of credit. They've been very good to us and they're vigilant about being sure that Chris and I are okay as a unit.

Without being able to see me to give a diagnosis, my doctor thinks it may be shingles. I did have chicken pox as a child and I do still carry the virus. Add to this that I've been immunosuppressed for almost a year and I wonder that I haven't come down with it sooner. I have to take 2 Valtrex pills 3 times a day until I see her next week. I've done a little reading on the subject, glutton for punishment that I am, and the blister looked similar--not exactly like shingles. We're not really sure that this is what it is, but my doctor isn't taking any chances. Chris has never had chicken pox and is now in danger of me. He's not to touch the blisters or rash since he can contract chicken pox from contact with them. Even if it's not shingles, I don't want him to take any chances. I'll see my local oncologist tomorrow.

Now I'm worried about infecting unsuspecting people. This is quite a switch for me. Dixie is in the clear since she's been previously exposed to chicken pox, but I can't vouch for other people that I will come into contact with. It's very frustrating to think that I could pass something along. I'm reassured that it's not airborne and that you actually have to touch me at an infected point to catch anything. So, please forgive me if you want a hug and I run the other way.

I'm thinking about taking bets on what strange and new complication waits on the horizon. On second thought, I really shouldn't joke about things like that. As far as I'm concerned, life is still good and I don't have much to complain about. I'm taking a break from baking with self preservation in mind. My little gut is hanging out a little farther than I'd like. My own fault for gorging on cookies and all things full of sugar. What was that promise I made to eat well with nutrition in mind?

I'll ask Dr. Bienvenu about my skin tomorrow. Of course I'll post what he says.

Tuesday, December 4, 2007

Day +189

I couldn't sleep, so I've been trying to keep myself entertained without waking everyone else up. Unfortunately, the cats heard me moving around and since they know I can open cans, they've been following me around making a bit of noise. It's nice to be loved for your innate skills.

My dry skin continues to be a problem for me. I can't remember if I mentioned it before or not, but I'm covered in tiny red bumps from the neck down. It seems to be getting worse in some areas and holding steady in others. I've been saturating myself with Aquaphor to keep my skin from cracking and flaking. It has managed to keep me in check, but I'm still hoping for some relief.

Chris has been researching the problem and last night, he thought that he'd found a potential diagnosis. Please keep in mind that I've never in my life had a problem with my skin that required special attention. This excludes puberty, and vanity--we've all lived through it. Chris found several articles related to PTLD and transplants that mentioned eczema. Most of them pointed to immunosupressive drugs and possible GVHD being an underlying cause.

I'm not sure that the tapering of my Prograf started this, because the whole dry skin issue cropped up during my last stint in the hospital. My doctor still doesn't think it's GVHD because I'm not presenting with the usual symptoms. A few articles mentioned family history. I told Chris that there was no way that it could be family history. My mother's side of the family has the most beautiful skin you've ever seen and to date I can't remember any of them suffering from any skin related ailments. My dad had a tendency to get sunburned, but no eczema.

Chris made a very valid point after I stepped down from my soap box. I actually don't know a thing about my family history. Since my transplant engrafted, I've been operating with a whole new system. Somewhere out there could be an extended family only related by transplanted blood. Spooky when you think about it. The woman who donated the umbilical cord blood could suffer from any number of things, including eczema.

There are a host of realizations that I've been dealing with since my transplant. I understand the mechanics of what happened and why, but the science of it occasionally flusters me. I know that I'm in very good hands, so I don't let the small stuff bother me.

These are the ramblings of someone who didn't get enough sleep. I'll try to make more sense later, when my brain catches up to the rest of me.

Monday, December 3, 2007

Day +188

Here I sit, all by myself, none the worse for wear. I managed to survive the raw meat weekend with no discernible damage. Dixie is at work and Chris is out getting the truck's windshield repaired. We were savaged by a large rock on the interstate yesterday and it left a big enough spider web crack that he thought it best to have repaired immediately. We had another incident with a rock in Houston that left a small chip in the windshield that we kept forgetting to get fixed. Strangely enough, they always land on the passenger side of the car while I'm riding in it. I believe I'm working with good karma, but bad mojo, so Chris will be buying all future raffle/lottery tickets.

Dixie's poor cat is stuck inside with me. She's a great big fluffy girl who likes to roll around in the leaves outside and watch birds. Unfortunately, the next door neighbor caught her sitting on the hood of his truck and had a very loud melt down the other day. I won't repeat what I heard him say (I was actually inside the house and it was like he was screaming next to me) but PETA would be sitting in his front yard with cans of red paint if they'd heard it. So, the Gregory household has yet another shut in. Poor Pez.

I'm still on the baking kick and Dixie is only feeding my habit. She came back from the store with 4 bars of dark gourmet chocolate yesterday. We both saw a recipe for chocolate dipped shortbread cookies in a magazine and I'm thinking that it's next in the line up. At the rate I'm going, I'll be back to my pre-cancer weight in no time. I actually think I'll exceed it at the rate I'm going.

I've had just about all of the "normal" excitement that I can stand after this weekend. Granted, non-medical drama is preferable to being hooked up to IV poles and having to ask for showers while trapped in a hospital. Speaking of hospitals, it's undergoing renovations right now to add a few more floors. This is great news, since they were always short on beds. On the other hand, I'm glad I'm not currently a patient. It's probably pretty noisy, and there's only so much construction dust that the hepa filters can get out of the air.

I'm off to feed myself and then I'll probably start baking.


Saturday, December 1, 2007

All Clear

Day + 186 Update

OK so we got the call back from Ann's transplant Doctor back in Houston. Long story short she said "don't panic". She reassured me that the under-cooked beef will probably not cause a problem, and we didn't have to start Ann on antibiotics or rush her to the hospital for a stomach pump. I was prepared for either of those if need be.

She also told me that because Ann s on a prograf taper her immune system is not fully suppressed. So she's not totally defenseless to any bugs she might run into, but just keep an eye on her just to be sure. Ann is scheduled (unless something else happens) to stop taking her Prograf when we go back to MDA the middle of this month for her check up.

OK so now I will try to relax and see if I can pry my fingers out of the ceiling without leaving claw marks.
Day + 186

I may have tempted fate with my posting yesterday, after all. We have a bit of a situation developing here tonight. We got take out from a restaurant that I've never eaten at before. Dixie frequently lunches there during the week, and we thought it would be a nice change from our usual haunts. Half way through my meal, I found a piece of very undercooked beef, which wouldn't have bothered me were I a normal person.

Chris called MDA and had my transplant doctor paged and we're just waiting for her to call back. I don't think that there's any particular protocol that gets followed in this case. It may just be a wait and see situation. In fact, I'm pretty sure it will be. No magic pill for undercooked beef.

I'm just going to sit in an out of the way spot until the panic dies down. I'll let you know what happens.

Friday, November 30, 2007

Day +185

WBC 5.2 K/uL
RBC 3.70 M/uL
HGB 11.9 G/dL
PLT 403 K/uL
ANC 3.4 K/uL

My doctor's appointment was completely uneventful today--just like we like it. My numbers are all in or close to the normal range. Dr. Bienvenu teased me for being disappointed that my numbers hadn't all reached completely normal levels. I can be a very competitive person, especially against myself. Weird, I know.

I've been having a problem getting my v-fend prescription filled the last few days. This is an anti-fungal pill that I have to have twice a day. It's much nicer than sporanox liquid and doesn't leave a disgusting after taste. It costs upwards of $2000.00 per prescription and this is the reason that I've been having problems. The insurance company was holding it up because of the cost, which I found strange, since I've been on it for 6 months and there's never been a problem before. I'll be completely out of it on Sunday, which upset Chris, so he called the doctor to see if I could make a substitution, while I called the insurance company.

While I tried to explain the situation to the customer service agent, who just could not understand what I was saying, Chris was talking to my PA. It was like banging my head against silly putty. Sometimes it bounced, sometimes it got stuck. Long, convoluted story short, my PA called my doctor and was told that I'd be discontinuing the v-fend next month, so I could just get a jump start and stop early. Imagine me trying to explain that to the customer service agent.

December should be an interesting month. For the first time in my adult life, I won't have to go to the mall or any satellite boutiques either to work or shop. Okay, it's not so much that I don't have to, but more so that I can't. Either way, it puts a smile on my face. No long lines, no crazy crowds, not to mention parking rage. I've also found out that I will definitely be stopping a number of medications that I've been taking for preventative measures. I haven't quite sorted out my feelings on this. On the one hand, it could mean that my doctors trust my immune system to do what it's supposed to, and on the other hand, it could mean that I am now wide open to catch a cold or virus. Maybe a little of both.

Aside from the EBV flare up, I haven't been generically "sick" in over a year. I had strep throat in October of 2006 and that's the last fundamental illness that I can remember. I'll probably think the world is coming to an end when I catch my first cold. Babies just look so miserable when they're not feeling well and I essentially have a 6 month old's immune system. We'll just have to wait and see.

Not to tempt fate, but life is pretty great right now. I feel really well and my bald patches aren't bothering me as much as I would have thought. I'm eating like I'll never see food again. I've got the baking bug and have been keeping Chris and Dixie stocked in sweets. I may get kicked off the island for this compulsion because we're all snackers. I've already had 4 pieces of peanut butter fudge today. I'm thinking about having a few more just to keep my strength up.

Tuesday, November 27, 2007

Day +182

We had a bit of a scare Monday night. Just as we began eating dinner, Dixie began choking on something. Chris performed the Heimlich and I called 911. While waiting for paramedics, she complained that she felt a burning sensation in her throat and that it still felt like something was lodged there. For those of you that have kept up with the blog, you know that something similar happened a few months ago. She's had difficulty swallowing for a few months and doctors haven't been able to give her a reason.

I had to isolate myself in one of the bedrooms when the paramedics arrived, so I can only tell you what happened second hand. Dixie's heart rate and blood pressure were dangerously high and she was still having trouble with her throat. She was taken to the hospital with Chris right behind her. The ER doctor believes that the stricture in her throat closed, trapping food and causing her esophagus to spasm in an effort to get the food down. The burning sensation was stomach acid trapped in her esophagus. At some point in the hospital, the stricture relaxed and Dixie was able to swallow some liquids. She was released and brought home in one piece.

For the first time in quite a while, I was able to worry about someone else, hovering annoyingly over Dixie and asking questions every few minutes. She's much better now and I am very grateful just to be able to give her a hug.

Chris had a dentist appointment and for those of you who know him know what a milestone that was. I will confess to being one of those people who loves the dentist. It doesn't hurt that mine are really great. I love having my teeth cleaned and the words "root canal" don't bother me. Also had quite a few of those. I've been able to nap during procedures and know that this marks me as a freak. Chris, on the other hand, has only been to the dentist once since I've known him. I know this has a lot to do with his pediatric dentist and it really is a shame that some people can just scar you for life.

He has a few cavities and needs to have a root canal and his teeth cleaned. This will all be done under conscious sedation next month. Chris is really anxious around dentists. He also gets to have Valium. Needless to say, he is not looking forward to any of this. I'm jealous because I haven't been able to have my teeth cleaned this year. I'm going to see if I can badger my doctor into letting me get it done locally, instead of having it done by the dental oncologist at MDA. I am a freak, I know.

My skin continues to be dry and I don't really think it's getting any better. In addition to this, my hair has started to fall out again. It started with my eyebrows getting thinner, and then most of my lower lashes fell out. The hair on the top of my head is noticeably thin, with intermittent bald patches. It's not like the first two times all of my hair fell out. This has been more gradual and frustrating. I'm fairly certain that this is a result of the Rituxan treatment. It has a half-life of something like six months, so it will be swirling around in my body for a little while longer. Maybe this time my hair will come back in a different color--other than white, please.

It's been pretty quiet, otherwise. I finished knitting Laren's present and just have to block it so that it stops curling up on itself. I spent some time looking through books for my next project, swearing to Dixie that I would find something more challenging than a scarf. About an hour later, I started knitting myself a scarf. Go figure. In my defense, I get cold easily now that I'm post transplant and I haven't knit anything for my self. This is true if you discount the hat I knit this summer. I think I misread the instructions, so it ended up being much smaller than it should have. It is stretchy and I can get it on my head, but it really is sized for a small child.

I have my weekly blood draw on Friday and other than that, there are no concrete plans for the rest of the week.

Sunday, November 25, 2007

Day +180

When I was first diagnosed with leukemia, I thought no problem, people get treated for this everyday. When I was told that there was a unique mutation associated with my particular type of leukemia, I thought that if they knew such a thing existed, there must be some form of treatment for it. When I was told that I needed a bone marrow transplant, I believed that I was on the road to being cured. Then I found out that my form of cancer usually only shows up in girls under the age of one and oh, by the way, your ethnic makeup makes it nearly impossible to find a genetic match for a transplant.

It never occurred to me to give up. I was told that with the standard chemotherapy protocol for ALL that I'd have a 92% chance of being dead by the end of the year. My insurance company wasn't overly concerned with the fact that I'd be dead and off their books when they denied my stem cell transplant. Still didn't believe it would happen.

I discovered that there were a lot of people who cared about what was happening, and took it upon themselves to do whatever they could to help us. Some I knew very well, and some were complete strangers who had read about our story and wanted to help. I was constantly surprised by how caring people could be and the lengths that they would go to in order to make things happen.

The insurance company gave in and paid for part of my transplant. The part that they wouldn't pay for involved expanding one of the umbilical cords in order to give me more cells during the transplant. The expansion of the cord was an experimental procedure and was not covered by my insurance company. I didn't have to have the expansion, it just happened that a computer randomly assigned me to have it done for a transplant study. The expansion would potentially increase my chances for success and so we were prepared to pay for it ourselves. Someone beat us to it. To this day, we don't know who sponsored me for the study. We've heard rumors implicating a transplant doctor and we've also heard that it may have been sponsored by a private cord bank. A stranger paid a very large sum of money to give me a chance. I hope they know how forever grateful we will always be.

This January, I wondered if I would live to see my birthday. Deep down, it just didn't occur to me that I could really die. I was terrified by everything that was going on and I was worried about how it was affecting Chris and I just wanted to be able to pick up and be normal again. Abstractly, I knew that my prognosis was not good and I could die at any time.

I turned 33 in October. Thursday, I shared a lovely meal with people I love. Today, I sat quietly, alternately reading and knitting. Today marks my sixth month anniversary. I got yet another day to be thankful for everything that has happened to me. I got another day to talk to a friend living far away and another day just to be.

I hope to be able to live quietly for the next thirty years, thankful for every precious moment.

Friday, November 23, 2007

Never been more thankful

Day +178

WBC 5.6 K/uL
RBC 3.65 M/uL
HGB 11.5 G/dL
PLT 450 K/uL
ANC 3.7 K/uL

Today was another trip to the hematologist and Ann's counts are still looking good. Our local doctor continues to say that Ann is the "most normal and healthy looking transplant patient he has ever seen". This time he went one step farther and told Ann that her blood counts are for all intents and purposes "normal", despite being a little below normal in the red blood cell and hemoglobin numbers. I'm not sure the transplant team at MDA would go as far as he did, but it's nice to hear someone in a white coat being positive.

Yesterday was Thanksgiving and I have to honestly say that the meaning of that holiday has been wasted on me for the last 36 years of my life. Why? Because, I never had a concrete understanding of loss or fear. I don't want to say that I've had a sheltered life, but I was honestly as ignorant of the words "crisis" or "disaster", as a dinosaur 65 million years ago would have been when contemplating the fire ball created by a asteroid falling from the sky. That's certainly changed and I marvel over how far we have come in almost a year.

Yesterday as we sat down to a modest dinner I paused to reflect. Not just on how much I love my wife, but how fragile and precious life and love really are. The struggle to defend them is far more difficult than the vast majority of people realize. However, despite all the loss, fear and suffering we have been through in the last year, I have never been more thankful in my life.

Thursday, November 22, 2007

Gobble, gobble

Dixie made three desserts for dinner tomorrow and they're just sitting in the fridge, taunting me. We took turns making side dishes that would be baked tomorrow, just to save on time and cut down on cooking all in one day. Chris will be making turkey since he was officially proclaimed the official "Turkey Maker" by his older sister last year. He seriously makes an amazing bird. It's always moist and flavorful and requires no basting. Twelve hours of brining does make a difference.

I hope everyone has a wonderful holiday with lots of love and laughs and a few well deserved naps. I'm looking forward to spending the day with people I love and calls to friends who are too far away for hugs. I also plan on eating like a champ since I'll be starting a new exercise regime on Friday. Sure I will. :)

Tuesday, November 20, 2007

Something fishy

Day +175

I did something today that just proves that I shouldn't try to do anything important immediately after waking up. All of my medicines are divided in a box that spaces them throughout the day for an entire week. I've been taking them for so long, sometimes I forget to look at the pills before I swallow them. This morning, I took most of my pills without looking, but for some reason I examined my Prograf pill. It's the size of a tic-tac and is banana yellow. This morning it was white which meant that it was double the dosage of my regular pill. I was still half asleep, so I took it without thinking about it.

The reason I have the white pills is because I had to have a high dosage right after my transplant. We still had some left over when my dosage was changed and so it was accidentally put into my case. When I mentioned it to Chris, he went into high gear. I had to call my PA and leave a message confessing what I had done.

Toby called me back while we were at the vet with Squeeze. Disclaimer: I was waiting in the car while Chris handled the appointment. As far as the "overdose" was concerned, she told me not to worry. The Prograf suppresses my immune system so that I don't reject my graft or vice versa. I'm supposed to be weaned from it next month.

Toby also informed me that my FISH test had finally come back. The results were negative. No leukemia, no cancer. I'm very grateful.

After Squeeze's appointment, Dr. Hackett came out to the car for a visit. It was really nice to see him again and I really enjoyed the visit. He's been our vet for quite some time and he has yet to ban us for our ill behaved kitties. They've maimed many vet techs and bitten both Drs. Hackett and Mitchell. I'll admit, I've met a few doctors that deserved to be bitten, so I can empathize with the kitties. Drs. Hackett and Mitchell don't fall into that category. I highly recommend them if you're looking for a new vet.

I discovered a small lump on Squeeze's back and was worried that she might be developing something sinister. I don't know if you'll remember, but she was very ill and under weight when we returned home the first time. The initial diagnosis at that time was that it was viral, but she was exhibiting signs of intestinal cancer. Dr. Mitchell ruled that out, but I couldn't help immediately jumping to conclusions when I felt the lump. The lump turned out to be an abscess that was drained and treated. We were also informed that it looks like her renal disease is progressing, and we've got a few treatment options that we need to consider.

I think it's going to be a an anxious week and I'm sure Squeeze will need a vacation from us when it's done. We have to keep up with how often she vomits, and the amount of water she's taking in, etc. I'm sure it's going to make her paranoid. I can totally sympathize with her. I hate it when people make those kinds of observations of me, but I know it's just because they're worried for me.

For the record, I'm eating like a line backer and my "skinny" pants are starting to fit which leads me to believe that they'll be snug in no time. My hair continues to get curlier with each passing day. You can't see it from the picture that was posted a few days ago, but the hair on top of my head actually stands straight up and curls straight back. I try to mash it down when I'm going out in public. I look manic when I let it do it's thing. Kind of like a demented teletubbie wearing a surgical mask.

We don't have anything else planned for the rest of the week, save for Friday. It's my weekly oncology visit. Hurray. I'm taking a break from cooking and other things inorder to finish some knitting, so I'm hoping for a nice quiet week.

Caroline, I made Bahn Bao and it actually turned out okay. They're like meat pies, only they're steamed. Let me know if you still want the recipe.

Sunday, November 18, 2007

Day +173

I can't believe so much time has passed. I feel like I had my transplant yesterday.

I've been feeling a bit nostalgic for some of the comfort foods that I grew up on, so I ordered a few cookbooks to help me replicate a few of the dishes. For those of you who don't know, my mom is half Vietnamese and half Chinese. When I was ill as a child she'd make wonderful soups and other dishes involving rice and marinated and stewed meats. Unfortunately, none of the recipes are written down and the few times I tried to get my mom to tell me how to do it, she'd always say, "Oh, I don't know". Then she'd proceed to say you put a little of this and a little of that. No measurements, and after having tried one or two recipes, I discovered that she'd left things out. Very frustrating.

So, now I'm armed with two Vietnamese cookbooks and a huge Chinese one. I've only tried two recipes, but they came out just like I remembered. Chris and Dixie have been very good sports about it. I say this, because a few of the dishes can be a bit exotic for some tastes. I'm going to try another one today and then I might retire from cooking for a few days. This is just because I have to wash my hands so often, and I'm still suffering from the skin condition. It makes the skin on my hands very irritated. Mostly my fault, since I always forget to put on gloves when I'm doing food prep. I blame the chemo brain.

I've set a few goals for next week, one of which is to organize Dixie's enormous pantry. It's deeper than I can reach, and it's packed to the gills with a combination of "her's" and "our's". Since I'm not naturally an organized person, I can only blame the baby stem cells. I'm beginning to become obsessed with finding a place for everything. I find myself cruising sites offering boxes and bins for everything. I've also begun to get rid of things I don't use. If I haven't used it after X amount of time, I figured that I wouldn't use it anytime soon. This has gone a long way to reducing the amount of clutter I produce. Chris is a naturally neat person, so I know he must really love me to have put up with my mess for the last thirteen years. Luckily, the stem cells have made an intervention and I'm learning to mend my messy ways.

Equipped with the noted changes in my behavior and blood counts, Chris has deduced that somewhere out there is a kid who falls down a lot (attributed to the high platelet count), who likes to be neat and is very laid back. I was a type A personality before all of this. Very high strung about certain things. It's nice not to have to worry about the small things that used to stress me out.

Laren's present is moving along painfully slowly. I'm staring at the balls of yarn right now and I could swear that they haven't gotten any smaller. I think I'm going to have a mocktail when it's finally done. I have three other projects on needles right now that I'm not looking forward to picking up once I have finished the mystery gift.

That's it for today. I'm off to find a snack and another excuse for not picking up the knitting. :)

P.S. I'm sorry for the trouble people are encountering when trying to post a comment. I don't know what's going on, but hope it will be fixed soon. Please don't let it discourage you, since I love to read them. It's my secret addiction.

Friday, November 16, 2007

The results are in

Day +171

WBC 6.2 k/uL
RBC 3.54 m/uL
PLT 427 k/uL
HGB 11.2 g/dL
ANC 4.5 k/uL

For some reason I developed amnesia on Wednesday and completely blocked my doctor's appointment from my mind. It was some time just before midnight on Thursday that I remembered that I had to be up and ready by 7am to make the drive into Baton Rouge fighting morning traffic all the way. My local oncologist hadn't been in touch with MDA, so he didn't know that I'd been hospitalized. He also didn't know that I'd contracted PTLD. I was reassured that he knew what it was. He joked with me about never doing anything the easy way. Tell me about it. From here on out, I will strive to live a vanilla lifestyle. No more crazy illnesses, please.

My numbers were mostly near normal. My hemoglobin and red blood cell counts continue to be low, but I'm not surprised. There are people who are two years out from their transplants that still can't maintain normal numbers. My baby stem cells continue to crank out platelets like crazy. Chris and I have a theory that making platelets is like finger painting for them. Imagine all of the refrigerator art hanging up inside me.

I also had to go to a local lab to get blood drawn for the CMV study that I took part in. I only have one more kit to turn in before I'm finished with it. I'll miss getting to see my research nurse, Marilyn, but I'm sure I can track her down the next time I'm at MDA.

So, I've been making dinner every night, except for Tuesday when we had take out. I'd like to think of this as a small accomplishment. The first time I tried to cook after we came home the first time, I had the shakes so bad, I thought that I might accidentally cut my hand off. Last night I helped Chris make sushi. Nancy, I promise it was vegetarian. No fish were harmed in the making of my dinner. It was the first form of sushi that I've had in a year and it was wonderful. I did manage to eat too much wasabi and spent the rest of the night sniffling, but it was well worth it.

Thanksgiving is coming up and for the first time in almost a decade, I won't be cooking the bulk of the dinner. I'm going to happily sit back and let Chris and Dixie do everything. I might volunteer to sit in the kitchen and look cute while they cook. I might have a nap. Who knows? The menu should be very interesting, and God bless Dixie, she shares my belief in multiple desserts. I hope to see quite a few to snack on over the weekend. I'm also excited that I'll finally have someone to share a pumpkin dessert with. For some very strange reason, Chris doesn't like pumpkin. Very strange indeed.

I've felt really well all week, save for the chemo brain. Every now and again I managed a moment of brilliance, only to stumble over something simple moments later. I'm not going to let it frustrate me. I know that my cognitive functions will slowly return. For now, I'm just going to sit back and relax. I suspect that the Rituxan is doing its job since I've gained four pounds since I started treatment. Yesterday, I managed to eat four large meals and a pint of ice cream. Today looks like it will be a repeat, except for the ice cream. Yes, I'm lactose intolerant and it's only gotten worse since the transplant, but you have to have your ice cream. I'm willing to suffer for the cause just to insure I get enough calcium. :)

Overall, it's been a very positive week. Chris spent an afternoon rearranging the sunroom so that I could do my own laundry. I did several loads yesterday and I'm sad to say that I loved it. I haven't folded any of it, but there's always this weekend.

Tuesday, November 13, 2007

When I first discovered a lot of the blogs I read today, I would check every day for a new posting. Then I would get impatient when some didn't post often enough for me.

Now that I am 5 months post transplant, I don't really have much to post on a daily basis. I've finished with my PTLD treatment for the time being and I'm just waiting for some upcoming appointments. I managed to make dinner today, and if the cat box wasn't in the same room as the washer and dryer, I'd do my own laundry. I desperately wanted to vaccuum, but I'm not allowed. I don't believe that makes for interesting reading, so I don't write about it on a daily basis. Otherwise, every day of this week would read as follows:

Got up. Showered. Got dressed. Ate. Brushed my teeth 3 times within 2 hours because I kept forgetting that I had already done it. Watched TV (or insert mindless activity here). Slept.

Doesn't make for an exciting read. I'll try to keep the posts frequent and will definitely post as I find things out, but I'm not sure if there will be anything before Friday.

Sunday, November 11, 2007

Happy day +166

Day +166

The whole week has been blah, except for Friday morning. I'm still having problems thinking clearly, so there's no telling where this will go.

Friday morning we got a call from Toby, Dr. Kebriaei's PA with news about some pending tests. I know I'm going to forget something, so please bare with me. My EBV test came back negative. This means that the test they use can't detect the number of viral copies in my blood. Great news on the PTLD front. I've already been told that if my EBV numbers go up, I'll automatically get PTLD treatment. This is just so it doesn't go full blown again. Fine by me.

My LP came back clean. No PTLD in my spine or brain and no leukemia. Yippee! Three more LP procedures to do. Three more months of brain freeze to go.

There is still no news on the last of my cytogenic tests. For the life of me, I can't remember what it was for. I'm sure Chris will update on it later. This is the test that gets sent off to a lab in California and has been pending for about three weeks or so.

I've been feeling a little up and down since my last dose of Rituxan. I always feel great for a day or so following a dosing, then the little critters inside me start to die off and that starts to make me feel a little run down. This is also about the time when my temperature starts to fluctuate, which puts Chris on the edge. I ran a temperature of 100.3 Friday night and that caused quite a stir.

I forgot to mention that I was told that I could have my PICC line removed. Hurray! Toby advised us to find a doctor locally to have the procedure done. For the life of me, I couldn't think of who to call. Do you call your GP, or Internalist, or do you track down a vein specialist? I know I was putting way too much thought into it, but when you've had a stem cell transplant, other doctors who don't specialize in your particular "uniqueness" tend to freak out.

Since it was early in the day, Chris and I decided to just drive down to Houston and have it done at IV therapy. We called in to MDA and left a message asking for a doctor's order and took off. Because of traffic and other stops, we didn't' get into Houston until 4pm on the dot. We had my line taken out by 5pm and headed back to Baton Rouge.

Here's where the fun part starts. Remember me carrying on about how my brain takes a vacation after chemo treatments? Well, I had methyltrexate injected into my spine during my last lumbar puncture. I am well and truly 50 IQ points off of my game and I have ADD worse than you've ever seen it. Shiny things fascinate me. Chris and I take turns driving back and forth to Houston and since my night vision is better, I usually do the return trip. Mistake. There are a lot of shiny things at night, I'm just saying. I managed to miss the turn off to LA and headed for Dallas, instead. In my defense, I was fixated on the shiny white car ahead of us and when they turned off, I just automatically followed. It took about 15 minutes to find our way back to the interstate and then I managed to miss another turn and ended up heading back into Houston.

We got back into Baton Rouge just after 10:30. I console myself with the fact that I was minus my PICC line. This leads me to wonder if the scar on my arm will match the one on my chest. This is when my temperature registered so high. Chris and I were too tired to drive back to the emergency center at MDA, so there was a bit of contention about what to do. We decided to get some sleep and see what my temperature was in the morning. 98.4.

My skin continues to be dry and Chris has almost convinced himself that I have a light case of GVHD. There are areas of raised redness on the backs of my calves and the tops of my forearms. They don't itch, but they do occasionally feel irritated. I'm continuing on with the treatment that my doctor recommended and I have an appointment with the oncology dermatologist next month. My transplant doctor wondered if I was having a delayed reaction to chemotherapy, i.e. skin toxicity. I wouldn't be surprised at all.

I threw up on myself yesterday, which hasn't happened in a long time. I've always managed to get to something before it happened. Chris and I were driving back from Whole Foods when I just started to feel bad. It just crept up on me and I thought that it was lack of food since I hadn't eaten yet. Chris stopped to get me something to eat and five minutes after I finished, I vomited. Not an all around good day. I felt better by evening and after a light dinner I vegged out on the couch.

That sums up my weekend.

Wednesday, November 7, 2007

Back home again

Day +162

It has been a long few days and we're just now getting settled back in. We got into Houston late Sunday night and stayed in the hotel connected to the medical center. Very convenient if you ever have to go. There's a skybridge that connects the two buildings and you can get your blood drawn at the hotel for labs.

Our first appointment was for 8am and luckily, our next two appointments were in the same location. Blood draw, variable lab test, and a chest x-ray. Unfortunately, I didn't know that a test to check my Prograf levels had been ordered and I took my pill, when I shouldn't have. I had to sit trough a fifteen minute lecture from the phlebotomist who told me that I would have to come back after 1pm to redo the test. After this little morning wake up we had to go to infusion therapy because one of my lumens had become blocked again. Those of you who follow the blog know that this has happened on several occasions and every time it does, there is no blockage. On this occasion, there was massive blockage. The IV therapy nurse had to inject a clot dissolver into the line and I had to wait an hour before they could try to extract the blockage. This worked out well because we ran into some friends from BMT that we haven't seen in months. Sherry and Wayne were always our waiting room buddies (the Olivers and Paynes, too) when we were shackled to the tenth floor for infusions.

Wayne was busy developing level 3 GVHD of the liver and digestive tract while I was working on my PTLD side project. He's lost over 50 pounds because of it, but he still looked good. There's something about a person who won't give up. We traded war stories and talked about future plans. Sherry and Wayne still haven't been released to go home yet; they're day +120. Maybe by Christmas, they said.

After a very nice visit with our friends, it was time to go back into IV therapy to see what we could see. The clot had dissolved and as a bonus, I got my dressing changed.

By the time this was all over, it was time for me the check in for my CT scan. For some reason, I had to go to the outpatient building, which is 2 blocks away. This is not my favorite place since things always seem a little chaotic. I was called almost immediately, only to sit in the back amongst fifteen other patients. The really embarrassing part about this whole things is, we were all wearing the same shirt. Could you imagine? No, really, you know the ill fitting scrub top they put you in for x-rays. No comfort or warmth. We all huddled under our blankets, waiting to be called. There were 4 men ahead of me waiting for a CT scan, so I had plenty of time to just sit. I did have one near altercation with a nurse. Everytime you go to get scanned, you have to sign a waiver stating you're not pregnant. I signed mine as soon as I checked in. Imagine me sitting between two older gentlemen who look fairly uncomfortable in borrowed jammies when the head nurse approaches me. She pulled over a stool and with paperwork in hand, began to interrogate me about the answers that I filled in. Her first question, "Are you pregnant?"

My body has been saturated in toxic chemicals for the last nine months. In addition to this I get a lupron shot every three months to shut down my ovaries and put me in temporary menopause. I also take a birth control pill. Then there's the whole feeling hideous most of the time thing that puts me off my game. To the nurse I replied, "I'm not." She stared at me for a full minute before insisting, "And how do you know?" I decided to stare her down as the men next to me squirmed in their seats. Apparently, she'd had more practice because I broke first. I had to do a run down of all the reasons that I couldn't be pregnant before she would leave me alone. Good grief, people! I'm not even allowed to be in the same room as a small child, trust me, I'm not incubating one.

After 2 hours there, we were free to go back to the hotel. Chris and I were looking forward to a nice nap until we hit the next snag. Neither one of our room keys would work. I'm not going to tell you how we did manage to get into the room, just suffice it to say we did. Chris called the front desk to find out what the problem was and it was us. The hotel room had only been booked through Monday and they didn't have any available rooms to move us to. So instead of that lovely nap, we packed up our belongings and moved to a hotel down the street.

Tuesday was a new day and I was determined to pose as the picture of health so as not to have to stay another day. I had a nursing visit at 10:15 which turned out to be the nurse making sure that I took my Ativan before the procedure. Good stuff. Thirty minutes later I was in a procedure room and the intrepid Jill was prepping me for my lumbar puncture. If you ever have to have an LP, Jill is your girl. She keeps you entertained while she's working and doesn't seem to mind that your speech is slurred and you're not making a lot of sense.

After this procedure, you have to lie flat on your back for at least half an hour and my leukemia doctor liked you to have a caffeinated beverage to stave off headaches. So, I got to lounge on a stretcher while trying to drink a coke sideways without spilling. My doctor came to see me to save time and overall, I'd say it was a successful visit.

My dry skin continues to cover me head to toe and I'm to continue doing what I'm doing for it.

The node in my lung which was first discovered at 2mm and then grew to 5mm is now 3mm. She's pleased and so am I.

I can almost breathe out of my left nostril which is ancillary evidence that the mass in that sinus cavity is getting smaller. Another thumbs up.

She didn't feel anything weird or out of place in my thoracic cavity--enlarged spleen or liver--so that's good.

I have a 7mm node in my thyroid. They don't get worried until the nodes measure over 1cm. Just in case, she's conferring with some colleagues in endocrinology to see if they want to do anything given my history. I plan on doing my best Scarlet O'Hara. Tomorrow is another day.

After this visit, I was squeezed in to see an ENT because of my perpetuating sore throat. I finally got validation that there is a sore on the side of my tongue. It's in a really hard place to find and the doctor had to pull out a few tools to find it. She put me on antibiotics just in case and prescribed me an ointment to put on the sore on my tongue and if I can manage it, the spot on my tonsil. It has a very foreign taste to it and it sticks just where you put it. You can feel the little lump of ointment in the back of your throat and it's very hard not to gag. The sore spots do feel better today, though.

After this, I had to hurry to the ATC to get my last dose of Rituxan. We only had to wait an hour for an open room, this time. Too many patients, not enough nurses. Since I was driving back to Houston this time, I announced that I was having a nap and promptly passed out. I suppose this is another example of me being non-compliant since your vitals have to be taken every 15 minutes for 2 hours. Who could seriously stay awake after the kind of day I had just had? I woke up 3 hours later, just in time for the vitals nurse to come in and tease me.

We were done by 7pm and couldn't hit the road fast enough. As a side note, if you ever have to take a trip with me and I'm the designated driver, plan on delays. There were 3 accidents along the way that slowed traffic and blocked lanes. One on the Mississippi River bridge worried us, because it looked like it had happened well before we had gotten there and there were no patrol cars or paramedics present. It involved one car that looked like it had clipped the wall and spun out of control. Chris called it in and found out that it hadn't been reported yet. A dozen cars had to have passed it before us, and no one called it in? That's atrocious.

I'm stepping off my soap box before I can get started. I still have major knitting to do and I've started another book. I don't know how successful I'll be with it this week because of the lumbar chemo. All those lovely chemicals bathing my brain in fog. It did take me over 2 hours to pen this pitiful post and another half hour to correct most of the errors. I may have to skip tomorrow's post or guilt Chris into it. :)

Saturday, November 3, 2007

Stuff that didn't get posted

Day +158

Thanks to maintanence on MDA's wifi network I wasn't able to post these files. So I figured since today was slow I would play a little catch-up.

Me and Ann waiting to go back into the hospital

Ann getting her vitals taken at the MDA EC

Ann just before an CT Scan

Here is the movie we shot while in the hospital that I couldn't post. Hope everyone enjoys it even if it is a bit late.

Etsuko the Cat: Ann's cream colored nemesis!

Ann embraces her inner "sheepyness" with new curly hair

Ok so thats it for tonight. We have apointments at MDA the first part of next week so we are relaxing and paking up for the trip back to Houston. Ann has not developed any new strange or otherwise alarming symptoms. Things look good so far and next week will be Ann's last (planned) dose of Rituxan.

Thursday, November 1, 2007

Day +156

Like other days when there are no appointments scheduled, I have very little to report. We still haven't taken a picture of my new curls, but I promise one for tomorrow.

I finally managed to finish a book I started over five months ago and that's a milestone for me. I have three other books that I've started and put down. As it stands, I can't remember the titles, so I'm sure it's going to be a do over. As for things that I keep picking up, I picked up Laren's Christmas present again. I can't seem to concentrate long enough to get any knitting done. I managed to increase the project by three inches, but there is so much more to do. Laren, I will get this done, and you owe me Apollonia pictures. ;)

As Chris mentioned in the last post, my skin has become very dry. I've never really had this type of problem in my lifetime. Just the opposite. Now I find that I'm scaly from head to toe. Very pretty. When my doctor worried aloud that it might be a fungal infection, I wondered how that could be. How could you have a fungal skin infection covering every inch of your skin? That would be horrific. The moisturizer that was recommended seems to be working. The skin on my shoulders and legs seems to be healing and at no point have I suffered from itching. Of course, I seem to be the princess of obscure side effects and infections, so I'm not ruling anything out.

I have developed a chronic cough that is worrisome to all in my life. It started in the hospital this last go round as a small thing when I would go to bed. When I got horizontal I'd start to cough for a few minutes. It was over almost as soon as it began, but with each day, it started to get a little worse. We've lost friends who've had transplants to a "little cough." I've started to cough a little during the day and it was something that we thought significant enough to mention to my doctor. If you'll recall, I've complained of a cough before and it was resolved with claritin. Pesky post nasal drip and allergies. It turns out that I haven't been taking claritin for a few weeks now. Almost as long as the cough has persisted. Dr. Kebriaei discovered this on our last visit. I thought that I'd been taking claritin, but it turns out that Chris had stopped giving it to me. The last Pharm-D made it an "as needed" drug, so it got discontinued. Needless to say, we started it again yesterday and the cough has receded significantly.

Regardless of the success of resuming claritin, I still have to have a CT scan next week. The doctor doesn't want to take any chances because of the node in my lung. I remember when my dad was diagnosed with lung cancer, it all started with a cough. Another transplant doctor assured me that it probably wasn't lung cancer. How can you reassure someone using the word probably? Just a thought. And I'm definitely not looking forward to the iodine that they inject you with in order to achieve contrast in the imaging. It makes you hot and flushed and there is the sensation that you just wet yourself. On top of that, it's bad for your kidneys. My poor organs are so full of chemicals, I'd probably glow in the dark if you dissected me.

The one draw back to my starting claritin again is that it makes it hard for me to sleep regardless of when I take it during the day. I kept waking up last night for no apparent reason and it wasn't as if I wasn't lucid. Chris kept asking me what was wrong and I couldn't form a valid answer. I'm hoping for uninterrupted sleep tonight.

There is very little else to report. I'm determined to finish Laren's gift this weekend and then I'll pick up a project for myself. I watched a knitting show today and the advertised project was for beginners. It made me think that I needed to take a knitting class, because I just couldn't follow some of the stitches. Beginner indeed. I'm still determined to knit a sweater and have it finished by this time next year. Perhaps I'll just jump in and choose an intermediate project, so there.

Wednesday, October 31, 2007

Just call me 8676

Day +155

Ann's Latest blood counts:

WBC 4.9 K/uL
RBC 3.26 M/uL
HGB 10.4 G/DL
PLT 436 K/uL
ANC 3.24 K/uL
LDH 443 IU/L

We where in Houston yesterday for Ann's third dose of Rituxan and we have a bit of good news to share. I will add the disclaimer that it's not as definitive or quantified as I would like, but it's good non-the-less. Dr. Kebereai checked Ann over and said that she felt like Ann was having a complete clinical reaction to the Rituxan. The massive node in Ann's neck has receded completely and she is able to breath a bit our of her left nostril if she holds her right one closed.

In addition Ann's graft looks really health and energetic. The chimerism test for Ann's bone marrow biopsy taken two weeks ago came back and it looks like the expanded cord is still the final winner. Ann had two donor cords: DUCB 8676 and 306286P. 8676 was also expanded to increase the amount of stem cells available for the transplant. It only took a couple of weeks after transplant for 8676 to dominate and now a couple of months later it still is. Ann has joked that she should change her name to "8676".

The reason I put the disclaimer on the news is because our doctor explained that the clinical response to Rituxan and a visible/measurable response on a CT or PET scan may lag by 6 weeks or more. It would be nice just once to have a doctor state something with absolute and unequivocal certainty. Still I will take my good news where ever I can find it.

Ann's new hair, which is baby fine has reached a point where it doesn't have weight on it to keep it straight. After she takes a shower it starts to curl up like a sheep. It's both cute and a little disturbing at the same time. Ann is really worried about future styling options, but has promised a picture of it tomorrow.

The only other issue that Ann is dealing with right know is a strange case of dry skin all over her back and arms. We thought that this might have been GVHD, but the doctor ruled it out. It might be fungal, which isn't likely because it doesn't itch. Its probably a reaction to the water in Houston, which is rough, the new antibacterial soap from the hospital or both. Just to be on the safe side, Doctor Kebrieai set up a appointment with the dermatologist next week when we return for the next dose of Rituxan. Complications are the rule not the execption for post transplant patients.

Happy Halloween everyone!

Monday, October 29, 2007

Couch potato

Day +153

I really should be packing for our return visit to Houston, but I just don't feel like it. So I'll just ramble aimlessly until I get tired of typing.
Years ago, when I went to LSU the first time around, my friends Tina and Caroline and I would all spend many an afternoon or evening at the Chimes. This is back when the legal drinking age in LA was 18. We'd have a meal and a pint or two and just talk for hours. The reason I'm reminiscing is that Tina was able to pick out the Chimes East from Travis' pictures. I couldn't stop laughing when I realized that the brick floor and cedar siding was classic Chimes.
We'll all have to go and have a pint when the coast is clear.
Things have been quiet all weekend except for a few minutes when some huge trucks stopped in front of the house and started vibrating everything in site. They were using sonar to search for oil and gas. Funny when you think of it.
I can tell that it's time for another treatment. I start to feel a little off a day or two before my next dose of Rituxan. I find that I can't eat as much as right after a dosing. Tuesday will be a late day. My doctor's appointment is at 2 and my treatment is at 4. This means that we'll be staying in Houston overnight. I'll pack enough for a week in the hopes that they don't keep me.
I can't report on anything else, except that I am my dad's girl. Chris informed me that the back of my head is covered in a sheep's pelt. It's very curly and the hair is starting to wave on the top of my head. I know I'm in good company since Susan C. also said that she has a Kewpie do. One of these days I'll remember to post a picture.

Sunday, October 28, 2007

Zippy the wonder slug

I can't remember what day plus it is, so I'll take a little break from that header today. Being out of the hospital has been lovely and I'm really enjoying not pulling a pole replete with bags of medicine behind me. No piercing beeping sounds in the middle of the night to alert me that there's air in my line or that my magnesium has finished.

I'm rediscovering day time TV and it's a magnificent travesty. There are so many bad reality shows on the air that I don't know where to look. I am learning that my life is not nearly "fabulous" enough and I really need a manager to handle my affairs. Could you imagine? My life is complicated enough.

I'm looking forward to my next dose of Rituxan on Tuesday. This appointment still hasn't shown up on my schedule, but the powers that be will make it happen. I'm hopeful that there won't be another CT scan this week. I had a conversation with my doctor and she seemed to think that last weeks CT scan was superfluous. I tend to agree. She explained that it was very difficult to see significant improvement after one week in between treatments. I agreed. She also did something that made me do a spit take. I know she probably had a lot on her mind when she did it, but none the less I had a breathless moment. She called my "complication" lymphoma. That's cancer, not pre-cancer. That would be a side kick for my leukemia. The context that she used it in was to let me know that no lymphoma had shown up in my bone marrow biopsy. I know it was a slip of the tongue, but it made me forget to breathe. After that one misstep, it was back to having a complication and not cancer.

I've been holding the couch down and keeping the cats warm all day. It's an absolutely gorgeous day outside and I truly wish that I could go outside with a cup of coffee and just absorb being around for another day. I haven't heard any expletives bursting forth from the neighbors house, so I'm going to guess that there aren't any major sporting events on the telly today. It's been nice and quiet and I've managed not to scare the pants off of Chris or Dixie today, so I'll count it as a success.

I asked our friend Travis to do something very special for me and he did it. I've been craving a Guinness for months and what could be better with a pint than a medium rare steak? I asked Travis to go have a meal of my choosing and take pictures and he did. That's a friend. I'm sure he would have done it even if he had been a vegetarian. I'm posting the pictures for everyone to enjoy. I especially love the fact that he got steamed vegetables with his steak. I loved it, but Chris looked a bit horrified. Broccoli and cauliflower? Aren't those weeds? People don't really eat those things without hiding them in cheese sauce. Travis, you're a man after my own heart.

Saturday, October 27, 2007


Friday left a lot to be desired.

For the first time since I started treatment in January, I have been non-compliant. I was released from the hospital after 1pm and Chris was kind enough to vote with me in going back to BR. I know this went against every warning firing in his big engineer's brain. He did it to make me happy and that was a very great birthday gift. Dr. Anderlini released me from the hospital with the provision that we stay in Houston until after my clinic visit on Tuesday. Couldn't do it. Hospitals and Hotels aren't exactly known for "cleanliness".

It took over 9 hours to drive from Houston to Baton Rouge. Nightmare. Chris had me drive which was a nice change. We made it to the Whiskey Bay bridge and everything stopped. It took 3 hours to move 5 miles. Cars were turning the shoulder into a third lane and weaving in and out of traffic. To the cowboy that nearly took off my front end with his Mercedes, I hope it was worth getting to Grosse Tete a few minutes sooner. I know I felt better.

There was a horrible accident involving 18 wheelers and 6 cars. By the time we passed the scene of the accident, there was nothing to be seen. 5 miles down the road traffic stopped again because an 18 wheeler was broken down in the left lane. I can't remember how long that took to clear because I was half asleep driving. When we got into Baton Rouge, there was another traffic jam for no discernible reason. We finally made it to Dixie's around 11pm.

My PICC line is causing a little concern today. One of the lumens was blocked when Chris tried to flush it. He was all set to pack us off to Houston when he called the ATC at MDA. They advised him to clamp it off and wait until Tuesday since we'd be coming in anyway. It's hard to remember not to keep my left arm bent. It makes my arm ache if I forget.

I've been warned that I will continue to be plagued by naseau and vomitting in addition to diarrhea. I can attest to this. I did vomit Thursday night. I just woke up feeling hot and uncomfortable. The next thing I knew, I was sick. The doctor chalked it up to my dinner choices. I've also been advised that I will continue to have problems for months after my treatment finishes. Apparently, my poor GI tract will need some time to recover from all of the kookie little squatters taking up residence.

My Baloney is crawling all around me as I write which alerts me to the fact that I've been remiss as a cat parent. How dare I stop petting her long enough to do something else. I'm off to placate the cream colored beast. Or am I? Chris just showed up with a lunchable, so I'm just so much furniture. :)

Thursday, October 25, 2007

A little something we missed

Day +149

It's Thursday and I'm still in the hospital. Dr. Anderlini hinted at me being discharged on Friday, pending today's CT scan results. Where have I heard all of this before?

I got a copy of yesterday's CT scan results and they are a bit confusing. The pathologist used a CT scan from January as my base line, which is a little strange, since I showed no tumors, etc. They included the CT scan from last week and this is what I'm going to use for comparison. There is no "significant" change in the lymphnodes. I'm told that this is good because they didn't get any larger. I'll accept that. Here's what we missed last time. There were several small masses in my liver. I don't know how we missed this on the last report, but we did. This time around, there were several small masses in my liver. They all measured smaller than a centimeter, which doesn't reassure me, because they're in my liver. Whatever the case may be, I will cope. Dr. Anderlini didn't make mention of them, so I didn't know to ask before he fled the room.

I have an appointment on Tuesday to get chemo in my spine and brain. Fog soup, here I come. There is absolutely no cognitive functioning for a week after this. Wednesday, I have a clinic visit with my transplant doctor. I'm sure that I'll have a host of questions. My first being, is the Rituxan working to your satisfaction? I'm okay if I have to have more chemo and if that doesn't work, there is a gene therapy that Baylor is working on. My doctors have already consulted with them just in case I need it.

I wish that I had more to report. I've finished coloring a few more pictures and the knitting is moving right along. There are a few mistake stitches that I was too lazy to pull out and re-do. I know I'll regret this later, but for now I'm dealing with my imperfections. I did manage to eat an entire sandwich for lunch today and I haven't vomitted yet. There is something very satisfying about bacon and bread. I'll keep everyone posted as I learn things. Cross your fingers that I get sprung tomorrow.

Wednesday, October 24, 2007

Crazy, Sexy, Nuts

D +148

Today's CBC results:

WBC 4.7 K/uL
RBC 3.04 M/uL
HGB 9.9 G/DL
PLT 469 K/uL
ANC 3.49 K/uL
LDH 559 IU/L

OK so the numbers look good. True to form Ann's baby stem cells seem seem to have a fixation on making platelets. I guess they have a talent for it so I'm not going to discourage them.

Apart from the daily CBC results we also got feed back on two other important tests. The first was the final results from the pathologist for the bone marrow biopsy of a couple of days ago. Turns out Ann's marrow has 1% blasts and they are all normal cells. There is also no evidence that the PTLD managed to infiltrate her bone marrow. Since the CT from last week showed the kidneys, liver and spleen where unaffected, that means the problem is isolated to the lymph nodes in her neck, abdomen and the large colon.

Also in the good news category we got the follow up test for the EBV viral load in Ann's blood. I know we didn't post it last week but the initial test showed (+-) 172,000 viral copies/uL of blood. After the 1st does of Rituxan the amount of virus in her blood has dropped to (+-) 3,200 copies/uL. As I understand it healthy people who have had Mono usually show up with about (+-) 200 copies/uL. I've been cautioned that you can't just treat a viral population as a static quantity, but a 53 fold decrease has got to mean something is working like it should. Combine that with the increase in RBCs and HGB over the last couple of days and I am cautiously optimistic.

The attending physician mentioned today that it was possible that Ann might be released from the hospital as soon as tomorrow afternoon. That depends on the results of the CT scans (we have one more tomorrow). If the Rituxan is working like it looks like it is then the lymphoid tumors and edema should show improvement on the scans. How much Rituxan she has to have after that or if there is some other treatment required (Chemo, CTL, Radiation) isn't clear right now.

After almost three weeks in the hospital Ann is starting to show some fine cracks around the edges. I think its the cumulative stress of dealing with not knowing what was wrong with her at first, expecting just some antibiotics and then being cooped up for a longer than we imagined. When she heard that we might be released tomorrow she got excited. That is until she thought it through and realized that we would have to wait here in Houston for the test results and procedure planning Monday.

So unfortunately it looks like Ann is going to have to spend her birthday in the Hospital this year. It makes me sad to see this small thing taken away from her, but I'm determined to make it the best I possibly can. Being sick sucks... not just for the big things you miss out on, but the small ones too.

We spent the night watching the documentary Crazy, Sexy, Cancer on TLC. After watching it Ann and me sat down and talked about it and came to the conclusion that the show really avoided the subject of cancer all together. Instead it concentrated on macrobiotic diets, crazy theories, and quackery.

I suppose that was because the subject of the documentary had been diagnosed with incurable cancer, which as it turns out later is stable and not progressing. People in that condition will do almost anything to try to save themselves, and when science and medicine fail what else do they have to turn to but hucksters and self help books? I admire the spirit of the film, but there are loads of things like listening to your doctor, aggressive treatment or clinical trials that can be done before turning your piece of mind over to wheat grass enemas administered at strange clinics and eating sprouts every day for the rest of your life.