Thursday, August 30, 2007

A Strange Discharge

DAY +91 (DAY 231)

WBC 6.4 K/UL
RBC 3.31 L M/UL
Hemoglobin 10.9 L G/DL
Platelets 290 K/UL
ANC 5.06 K/UL



Today was my bone marrow biopsy/aspiration. Everything went really well and I got a very nice surprise. One of my leukemia PA's performed the procedure. We got to catch up on everything and it was really nice just to be able to talk. It turns out that my bones are so dense, he had to take two samples for the biopsy. The first sample was too small, but the second one was perfect for the test. We'll have to wait until next week for the full test results. We're hoping that the ATC will call with the preliminary results tomorrow.

I got to see Dr. Kebriaei today. She told us that I was reacting to the stem cell transplant like a pediatric patient. That was a nice surprise. I didn't think that an adult could have that kind of reaction. I also found out that I would start my childhood immunizations in a year. I'm not quite sure where I'll have to report for those. Another spot of good news was that I could start introducing fruits and vegetables back into my diet. She's more concerned that I have a balanced diet. She still wants me to cook the vegetables for now, but I can start out with thick skinned fruit. The new diet will slowly be incorporated over the course of 30 days. Lettuce has to be last because of the effect that it will have on my digestive system. Think roughage to the nth degree. I pity the poor oranges that get in my way. :)

Now for the most interesting event of the day...

Just after my IVIG finished the head nurse popped in with a strange look on her face. I thought that I was in trouble, but then all of the nurses poured into the room and started singing Hit the Road Jack. I got discharged from the ATC, today! It was a total surprise. No more infusions at the clinic or at home. I have a handful of appointments next week and then we're free. I'll have to report to an oncologist once a week in BR for tests and I'll have to come to MDA once a month to see my transplant doctor. It will definitely be strange to get out, but I can't wait.



Tuesday, August 28, 2007

My two cents

I'm getting really anxious about next week. I keep running into one particular BMT patient at physical therapy and today we had a chat. She gets to leave on day + 90, which is this Thursday and wondered if my doctor would be letting me out early, too. We'll find out this week. I'm not nervous about test results or worried about the other things. I'm just ready to see my friends and family, not to mention my kitties.

On a personal note: Contessa, you can email me if you'd like to talk. Cindy can tell you how to get a hold of me. Tell her I'm still trying to figure out how to knit the SUV for her. :)

Michelle, stay tough. You're an amazing person and I know what you're going through.

"Live every day of your life like it's Shark Week"!

Day +89 (D 229)

WBC 7.2 K/uL (4.0 -11.0)
RBC 3.26 K/uL (4.0 - 5.5)
HGB 10.9 G/DL (12.0 -16.0)
PLT 289 K/uL (140 - 440)
ANC 4.48 K/uL (1.7 - 7.3)

Today's counts are a bit down from the last set of test results we got. I have been assured that this is nothing to be worried about as the production of the various blood cell types in the human body is not a "steady state process". Ahh but how much easier everything would be if it was.

On the positive side we are now officially independent of all transfusions. Ann's magnesium level was at 2.0 mg/DL, Which is well into the normal range of 1.8 to 2.9. So the transplant team has discontinued all the IV meds and we need to return the gemstar portable pump. I guess 9 pills a day finally did the trick.

I have to be honest, I am really nervous about this coming Thursday. Ann is scheduled for a bone marrow biopsy and every time she does one I feel like I'm riding a roller coaster at the top of it's crest. You get that awful anticipation of feeling your stomach's relative velocity reach zero.

We have met several people, who had progressed to almost +100 days and suddenly they get a back test result that reverses their entire world. It is very scary even thinking about it. So to pass the time we have been spending time watching all the comedy that we can. So far "King of Queens" and "30 Rock" are the stand out favorites.

Ann actually found a pearl of wisdom in an episode of 30 Rock the other day. To quote the Tracy Jordan character, "Live every day of your life like it's Shark Week"! I couldn't think of a more apropos statement if I tried.

Friday, August 24, 2007

Good Bye Dr. Alousi

Day +85 (D 225)

WBC 8.2 K/uL (4.0 -11.0)
RBC 3.40 M/uL (4.0 - 5.5)
HGB 11.5 G/DL (12.0 - 16.0)
PLT 323 K/uL (140 - 440)

Ann's counts are looking pretty good, no? White cells and Platelets continue to be in the normal range. While Red cells and Hemoglobin are almost at normal levels.

Today is a bit of a banner day as well because the transplant team elected to discontinue all the take home IV fluids we where using between clinic visits. The bags Ann was being given were saline and magnesium and the team is now reasonably comfortable that she can maintain the required level of it by herself by only taking pills. Ann is not happy about taking 4500 mg of magnesium a day, but it is preferable to having cold bags of fluid pumped in. It's also a reminder that MDA is beginning to consider the CVC port as extraneous. Hurray!

We said good bye to Dr. Alousi today. He is a very genuine and kind man and although we never did meet any of his other patients while we where under his care, it's hard to imagine them being in better hands. Dr. Kebriaei, who was our first transplant doctor had been out on maternity leave for the least couple of months and Dr. Alousi absorbed her cases. We are scheduled to see her again next week after Ann has her +90 day bone marrow biopsy.

I know we have been giving the impression that we will be leaving Houston on the +100 Day mark, or 9/7/07. Personally I would like to leave this place so fast that we will leave flaming skid marks, but everything is hanging on the results of the biopsy, chimerism and FISH tests. So we may hang around a few extra days just so we don't have to turn around and come back if anything is wrong.

Fingers crossed and 14 days to go...

Thursday, August 23, 2007

Day +84 (Day 224)

We didn't have clinic today, so I don't have anything to report on the numbers front. I honestly don't know what to do with myself on days like today. I finished my latest knitting project the other day and I haven't decided what I want to pick up next. I have a bag full of yarn and an order of yarn on the way. The order is for a gift project I have planned. Ha, ha, Laren, it's going to happen.

We did get a little surprise today. Usually, we get my MDA schedule online, and we're so used to our routine, that we rarely check it. We usually just show up on my clinic days at our regular time. Whenever I have a special visit, I usually get a call to let me know. Today, we got my schedule in the mail. This isn't unusual. The surprise was that my last IV therapy visit is on Monday. That's it. There's nothing else scheduled for the rest of the week. I have a bone marrow aspiration and biopsy the following week and a follow up with my original transplant doctor the next day.

This is all a little ahead of schedule. What happens next, who knows?

Tuesday, August 21, 2007

Day 82 (Day 222)

WBC: 7.1 K/uL
Platelets: 307 K/uL
RBC: 3.29 K/uL
Hemoglobin: 11.1 g/DL
ANC: 4.71 K/uL

As you all can see, my hemoglobin and red blood cells are coming up. This is the first time my hemoglobin has been over 11 g/DL since I've been diagnosed. Now, if my pattern holds true, something will cause my hemoglobin and red blood cells to fall. Maybe this is the week I break the pattern.

Chris is really starting to feel anxious about us leaving MDA. Tentatively, we'll be given the green light in 18 days. We talked to my APN today about what would happen afterwards. It seems that I'll have to have blood work every week and she suggested having it done in BR to save the weekly drive to Houston. Chris mentioned that we wouldn't mind the drive and she asked us to consider it. I would have to come into Houston at least once every three months to follow up with my transplant doctor. This is if my numbers continue to remain stable. There are so many contingencies.

The physical therapists are starting to really increase my workouts. Today was interesting in that they conceived of new exercises to torture my lower body since I've been blowing through workouts. I felt like my arms and legs were spaghetti afterwards. I actually started getting a charlie horse at the end of the workout. I can't wait to see what they have for me on Friday.

I find that the closer that I get to 100 days, the more anxious I am to leave. I spoke to another transplant patient today who was a few days behind me and she felt the same way. You start out thinking that the 100 days will never be up and then it falls upon you. I'm ready to pack boxes and load up the truck just so we can drive off from my last appointment. I know that's not very practical just now, but it's how I feel.

There are still so many things to consider. I've been looking at house plans and developments in BR and Denham Springs. In addition to that, Chris needs to find a job with benefits. So, in a shameless plug for my hubby, he's a fabulous mechanical engineer with experience in construction scheduling.

And with that, I can't think of anything else that happened today. No clinic visits tomorrow, but I'm sure that Chris will find something to write about. :)

Monday, August 20, 2007

No more clinic on Mondays

Day +81 (D 221)

I guess today is something of a milestone because this was the first Monday in a very long time that Ann didn't have to go to clinic...

...Of course that also means it's the first Monday in a long time that she didn't have to have her vitals taken or blood tests done. Also no-one handed us test results which I could use to reassure myself that Ann is safe. So no blood counts today.

You guessed it, I haven't quit worrying yet and I'm not sure I ever will.

Still despite not having any clinic visit scheduled today Ann decided she still wanted to go to physical therapy. She says she really feels better after working out with the therapists, but I think she is just committed to getting better and getting out of here. The physical therapists feel the same way and they have started mixing up her exercises to include more walking and tread mill activities. They want Ann to be as mobile as possible before sending her back into the wild.

In other news, the PharmD has reduced Ann's take home magnesium IV infusion. It now runs a little over two hours and is a lot more manageable for Ann to carry around the apartment. I suppose this is all in preparation for the tag and release program. Nineteen days to go.

Saturday, August 18, 2007

Late Post

Day +79 (D 219)

Apologies for the late post. We filmed this last night but apparently Youtube had a problem with it's servers and I couldn't post it until now.


Wednesday, August 15, 2007

Day +77 (D 217)

Thankfully, I can report that yesterday was uneventful. I didn't manage to run a fever and I was allowed to complete a full workout at physical therapy. All of the physical therapists joked with me about staying out of the hospital. Lucky for me, I did.

I have been driving lately, and Chris is pretty supportive of it. After 8 months it's strange to be behind the wheel again. For those of you who have been in a car with me in the past, you'd be surprised at the change. I'm going to guess that one of my cords came from a very impatient baby. I'm working on the patience bit, but the traffic here is unbearable. I'm happy to report that I can feel the soles of my feet and I'm pretty sure that I can feel my fingertips. I know that sounds strange, but after 8 months of not really being able to feel anything but pain it can be hard to tell.

I find that I'm becoming very impatient as day 100 approaches. I'm desperate for a new routine. It's just time to take my life back. Poor Chris is in knots about me relapsing. I don't know what I can do about it. I'm determined to live my life so that I can say that I enjoyed my second chance. I can't worry about a relapse.

Monday, August 13, 2007

Indy 500

Day +75 (D 215)

Here we are 3/4ths of the way through the 100 days and today's counts are...

WBC 8.2 K/uL
RBC 3.05 K/uL
HGB 10.3 G/DL
PLT 321 K/uL
ANC 4.97 K/uL

As you can see Ann's counts have bounced back from her time in the hospital. I have noticed that it seems when ever her RBC numbers approach anything above 3.0 K/uL she starts running a low grade temperature (99F - 99.9F). I don't know if this is just a coincidence or if it is significant. We did mention it to the attending physician while we where in the hospital this last time and he thought it was "interesting". I'm sure what he really meant was that the whole process of a transplant is so complicated and has so many variables it is difficult to isolate cause and effect from each other.

Anyway the important thing right now is that Ann is doing well and her counts are still strong. She got a little flack at physical therapy today after coming out of the hospital. The therapists are worried that they have been "too aggressive" with Ann and that may have contributed to her temperature. I say Bollocks! But none the less Ann was given a light work out today. Maybe tomorrow they will let her go back to her usual level and routine after they re-evaluate her ability again.



I'm happy to report that the neuropathy in her hands and feet has almost completely vanished. She has even asked the Pharm-D on the transplant team to reduce her dose of her lyrica several times now. I think that they will take her off it altogether soon. The decrease in neuropathy has allowed Ann to start doing one of the "normal" things that almost everyone takes for granted these days....driving.

You can see her in action in the picture above. I usually drive in the morning and let her drive home after clinic. She is practicing for the drive back home to Baton Rouge, but she is developing road rage from the Houston traffic. Maybe when she is a little farther along I will ask the team if I can let her drive on the 610 Loop around Houston. For those of you who have never driven in Houston, taking the 610 Loop is like driving the Indianapolis 500 in a Yugo! Or it is for me at least, but Ann's really looking forward to it anyway.

Friday, August 10, 2007

Sprung from the joint

Day +72 (Day 212)

I've been in the pokey since Tuesday, and frankly, I was considering becoming non-compliant. It's hard to appreciate something that you get to enjoy on a daily basis. I had forgotten the mind numbing boredom that comes from sitting in a room that's not even 8' x 10'. This time around, I was put into a positive pressure isolation room. There's an outer chamber that you have to enter inorder to get into the hospital room itself. The reason is to contain any airborne pulmonary viruses. It's to protect the other patients. You also had to put on a paper gown and a mask. Also to protect the other patients on the floor. You could track something out if you visited without complying.

I had several blood tests and nasal washes. All of them came back negative for the viruses that they were looking for. I continued to have headaches and severe sinus drainage. The attending doctor couldn't find a reason for my symptoms. I suggested allergies. He conceded that it could be, but he wanted to rule everything else out first. This is a doctor that attended to me during my transplant stay. He's a very nice guy and actually listens to what you have to say. He also has a sense of humor. Yesterday, when he was checking in on me with his team, he asked me if I had any questions. I asked him what time he'd be letting me out that day. He started cracking up and said, "How about if everything goes well and you promise you'll come back if you feel bad, I let you out tomorrow." I promised and sealed the deal by bribing him with a soda. You have to love a doctor with a good sense of humor.

I lost 11 pounds while I was in the hospital. I've developed an absolute aversion to hospital food. Chris can attest to this. I only managed one full meal while I was in lock up. Yesterday I only managed a few bites of dinner. 15 minutes later, I was vomiting like you couldn't believe. Everything that I had managed to eat during the day came back and then some. Poor Chris was beside himself. He couldn't get me to eat and was worried that I would make myself sick.

I was released from the hospital around 1pm and as soon as I got into the car, I was starving. I would have eaten brussel sprouts dipped in mud at that point. I was able to eat a sandwich and a yogurt with no problems. I aced dinner, too.

Chris and I have started talking about a family of our own. The chances are that I won't be able to have children at the end of this. We've started to look into adoption. Chris ordered a few books on international adoption. We've contacted an organization located in Houston that facilitates adoptions in Vietnam. We're also looking at China. It's a while off, since I need to be cancer free for a certain period of time, before we can be considered.

Right now, we're looking at houses in BR and the surrounding areas. I might be coming home in less than a month, and we'll need a permanent place to live. One thing at a time. Chris keeps reminding me that I need to get better before we move forward. You know the countdown. Maybe I'm tempting fate, but I've already bought a dress for a friend's wedding in October. I just know that I'd really like to dance with Chris without having to worry about cancer or relapses. Let's hope my hair comes back in time. ;)~

Wednesday, August 8, 2007

In the Slammer

Day +70 (D 210)

Short update for today.

Ann got admitted to the Hospital this morning around 3 AM. We just saw the attending physician and he plans to keep her here at a minimum until Monday.

X-rays taken last night int he ER have been officially determined to be "inconclusive" but they are being run back through radiology. Later today she has a CT Scan of her sinuses and chest.

Ann's fever is gone completely but she is still getting periodic sinus pressure and some clear drainage. They currently have her on 24 hour drips of two IV Antibiotics (vancomycin and maxipime).

Ann counts today...

WBC 6.5 K/uL
RBC 2.73 K/uL
HGB 9.1 G/DL
PLT 267 K/uL
ANC 3.61 K/uL

These numbers are a drop from yesterday's counts and that worries me.

I have not had any decent sleep since yesterday so I'm signing out until later.

Tuesday, August 7, 2007

"It's deja vu all over again..."

Day +69 (D 209)

Ann's counts today...

WBC 8.9 K/uL
RBC 3.08 K/uL
HGB 10.3 G/DL
PLT 308.0 K/uL
ANC 6.05 K/uL

So the day started out pretty good. After last weeks "bump" with parainfluenza, Ann was getting back into the swing of things. Her temp readings have all been both low and high but neither alarmingly so and she was feeling good enough to return to the routine at physical therapy in the mornings.

Today started especially encouragingly because the transplant team actually discussed two things that might happen on Day +100. That is if things keep going well. The first is that Ann would be sent down to the infusion therapy department on the second floor and they would take the CVC port of her chest. The second would be a general discharge from MDA and clearance to leave the city of Houston!

Day +100 will fall on 9/7/07 if all goes well. +471 Days or 18 months post transplant marks the point at which the statistical chance of relapse is as low as it will ever get. Then +1731 Days or 5 years is the point at which people are considered "cured". I probably shouldn't be excited by it because I know that making it 100 days post transplant is not the end of any possible problems. But we can both feel the excitement building. Perhaps that makes this a dangerous time too. I worry we could be developing a false sense of security.

I say that because at bed time tonight Ann again registered a temperature of 100.7F. Thats above the magic number of 100.5F anything above which we have to go directly to the ER. Thats where we are again tonight.

While Ann is off to get chest x-rays, a sinus CT scan and the ER doctor tries to admit her to the hospital before finding out what she actually has I have made an observation. Yogi Berra was a wiser man that almost anyone gives him credit for. His malapropisms may have sounded like juxtaposed nonsense, but they are really quite suitable and sophisticated.

Here we are in the ER and really is "... like deja vu all over again".

Monday, August 6, 2007

Knitty pity

DAY 68 (DAY 208)

I'm slowly getting over my viral thing. I keep waking up with sinus headaches at odd times during the night. This is really worrying Chris. I keep taking my claritin and sudafed and this has helped. My transplant team wants to schedule a sinus CT scan to see what's going on. I think this will take place tomorrow. The team was going to give me the day off tomorrow, but the sinus thing reins it's ugly head again. Also, I'm losing my voice. It hasn't been a banner week.

I tried to fill the prescriptions written to me by Dr. Nick, but no one in their right mind will sell me booze. Go figure. My head would probably explode if I had a taste of liquor. It's been over eight months. I will admit that I can't wait until I can have a glass of Malbec.

Physical therapy resumed today and it wasn't pretty. The therapist reined back on some of the exercises because I haven't been there in over a week. I'll go again tomorrow, and hopefully it'll be a little better.

This last week has been a total wiener. Fatigue is something of a problem right now. It's been so long since I've had a problem with it, I feel that I've taken a step back. Chris is encouraging me to listen to my body and nap when I need to. Unfortunately, I always feel like I need a nap. I'm sure that once everything clears up, I'll be back to normal. A lot of our transplant friends have been keeping up with me, which is a bit of a nice surprise. We all have so much to worry about to begin with. It's nice to know that we're all tapped into each other. Maybe I'm just being silly because I don't exactly feel well.

Our friend Liz in BR just found out that she might have chronic GVHD. She's a year out from her transplant and she's been having a string of problems that have been causing her a lot of grief. Please say a prayer that she starts feeling better soon.

On to lighter things, I have four separate knitting projects going on right now. When I get bored with one, I just pick up another. This has just guaranteed that I can't remember where I left off. The latest project has been restarted over five times. This better be it. Otherwise, I'm going to set it on fire. Time will tell. :)

Friday, August 3, 2007

Feel'n Fuzzy

Day +65 (D 205)



Big news today but lets get right to Ann's blood counts...

WBC 8.60 K/uL (4.0 - 11.0)
RBC 3.19 K/uL (4.0 - 5.0)
HGB 10.6 G/dL (12.0 - 16.0)
PLT 318.0 K/uL (140 - 440)

What can I say, but that things continue to look good. The differential counts of individual cells don't show anything weird or out of the ordinary either. Our transplant doctor is extremely impressed with how Ann is doing and says she is "right on course". He even went as far today as to begin discussing what could happen to us on Day +100. Hint, hint, Ann has been practicing her driving.

Also in the good news category we got back the chimerism test that was done on Day +58 along with the last bone marrow biopsy. Previously, on Day +30, Ann was 100% engrafted with the exact mixture being 77% to 23% for each cord and none of her cells in evidence. Today it seems that the dominate cord is close to taking over as it has increased to 97% while the recessive one is down to 3%. Also it looks like 99% of all the T-cells produced are coming from the dominate cord. So to sum it up Ann is still 100% engrafted with one cord becoming increasingly dominate and there is still no evidence of Ann's original cells ("no pre-transplant pattern observed by PCR-based microsatellite polymorphism analysis").

The parainfluenza bug that she picked up seems to be receding. Her temperature has started to return to normal and she is feeling less fatigued. Shes' not quite up to the point that she was last week, but she's getting there. We did have an invite from a couple that we met in clinic to come over and have dinner at their house they just bought here in Houston. However we had to decline until Ann is over this bug. We can't risk exposing her to another patient and potentially setting their treatment and recovery back.

Last but not least if you look at the picture very carefully you will notice that Ann is starting to sprout like a Chia-Pet! It's a bit bewildering seeing hair starting to poke out from her head after half a year of her being bald. I'm just gonna have to learn how to cope.

Thursday, August 2, 2007

Parainfluenza

Day +64 (D 204)

Today's special guest blogger and graduate of Hollywood Upstairs Medical College, Mayo Clinic Correspondence School, and Club Med School, Doctor Nick Riviera...



Hi everybody!

I just wanted to say that Ann is doing ok but today she is not feeling too good. As many of you know I may have gone to medical school for four years and that qualifies me to not only fill out as many prescriptions as I want but to guess if someone is feeling bad. Seriously I can prescribe anything I want!

But back to the patient...she is a bit under the weather and I would say that she is suffering from a total lack of booze. I know cause when I saw her I said "Holy smokes! You need Booze"! She should come down to my elective surgery clinic...it's where the action is. And I am running a special where every surgery is half off for kiddies and pets.

But seriously Ann has a nasty little bug called "Pa-ra-in-flu-enza"...hey I said it! Apparently it is something only the kiddies get and it infects the lower respiratory thingy. Oh I wish I had had wikipedia when I was going to medical school. It says that repeated infections can happen throughout life and it usually lasts for 7 days.

Normally in these cases I prescribe my I-Can't-Believe-It's-Not-A-Government-Approved-Antibiotic-Substitute and the patient is sometimes Okey-Dokey in no time. It's the pathway to health! Now I got to go and do a complete nosectomy.

Just remember if you want to have an exclusive surgery with me, Dr. Nick Riviera, dial 1-800-DOCTORB. Note the extra B is for BARGAIN!

Bye everybody!




Seriously...

Ann has been running a bit of a temperature (99.1F - 100.4F) since our little trip to the ER a few days ago. Not high enough to be trouble, but enough to make me keep checking her every two or three hours. Today she threw up a bit and so we called the transplant team and asked if we should come in.

They said no and Ann probably has parainfluenza which has started turning up in a few other BMT patients in the last few days. They think she is the victim of cross contamination and put her on an antibiotic as prophylaxis. Unfortunately the bug is viral so we are just going to have to wait it out for the next couple of days. The transplant team seems to be pretty confident that Ann is in no danger and this is a pretty normal occurrence.

Ann spent most of the day zonked out on the couch and resting. By the middle of the day she was feeling better and managed to eat something and then went right back to sleeping until the evening. That pretty much wrecked my plans for getting her to work out on her foot bike or do something active, but I don't want her to overdo it when she isn't feeling good.

More tommorrow...