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
BUN 9 G/DL
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

Blurg

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
BUN 6 MG/DL
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.
My CT scan has been rescheduled for 10:30 today. I've been fasting since 8pm yesterday. Needless to say, I am one cranky little kiddie.

Caroline sent me a care package yesterday. Thank you! I now have a good book to read and some fun mad libs to do. You can always count on Caroline for the good stuff. :) I've already tortured Chris with the stupid questions book. Good to have on hand.

I have a separate CT scan on Thursday for my head and neck. I wonder if this means that I'll have to drink more barium and have move iodine injected. It seems like a complete waste since I'll be drinking barium and having an iodine injection today. I also found out that I'll be having a scan of my pelvis. Guess how they get the iodine in there. Let's just say that the word enema was thrown around a few times. Can't wait. If they keep this up, I'll get a reputation. They just want to see how far the tumors have infiltrated my lower colon and in there's any bladder involvement. I'd rather think that there isn't, but that would be naive on my part.

So it's T-minus 15 minutes until the first barium shake arrives. I only have to drink down 3. Yummy, yummy. I chose apple this time. I can't quite remember how I felt about it last time. I'm hoping it was positive.

I'll write more when I know something else and I promise not to go into graphic detail about the introduction of iodine into the lower intestine.

Tuesday, October 23, 2007

Update

Happy birthday Paige and Bob!

We saw the doctor and he didn't have any news about the aspiration or biopsy. He did tell me that I'd be getting a CT on Wednesday and if all went well, I'd be discharged on Thursday. I asked him about the goober in my sinus cavity and he seemed to have forgotten it was there. He expanded the CT to include my head just to check in on things. A two for one as he called it.

The Rituxan is going down just fine. No fevers or chills. My IV pump keeps beeping like crazy because I'm on so many bags of medicine and they all finish at different times. Very annoying.

I finished coloring one picture and made an absolute mess of myself in the process. I loved every minute of it. Chris had me order a little something for lunch and I think it's a nap after that. The life of a prone patient tends to lean toward the tame side.

Writing under the influence

Day +147

I'm currently tanked up to high heaven on pre-meds for Rituxan. Nurses hung a bag of benadryl about 10 minutes ago and I'm desperately fighting the urge to pass out. I get pre-meds because the doctors don't want my system to do anything cute while I'm getting infused. As you'll all recall, I got the chills and fever with my last dose. My nurse has reassured me repeatedly that I shouldn't have such a dramatic reaction the second time. Considering that I continue to be in the top percentile for strange cancer happenings, I'm not so sure.

My hair has begun to curl in the back leading to a myriad mullet jokes from my beloved husband. It's funny to think that I have pseudo-curly hair after a lifetime of straight as a pin, baby fine hair. It's still baby fine, but it screams business in the front and party in the back. All of my luxurious baby mink eyelashes have fallen out, leaving me with the same old sparse blinkers that I started adulthood with. Sigh. My eyebrows can still give Abe Vigoda (Fish from Barney Miller) a run for his money. I really need to do something about that.

We continue to be in the dark about my bone marrow aspiration and biopsy. Today is a clinic day for the transplant doctors, so I don't think that I'll see Dr. Anderlini until later this afternoon. My fingers are crossed that I don't have any marrow or CNA involvement with the PTLD. My life has refined down to a series of abbreviations and I'm not liking it.

My appetite continues to improve slowly. I now get hungry and can manage to eat a small meal without immediately revisiting it. I had stomach cramps for the better part of yesterday, but I think that has something to do with all of the drainage that I'm experiencing. Let's hope the necrotic mass in my sinus cavity is dissolving thanks to the Rituxan. I'll have a CT scan either Wednesday or Thursday. My night nurse seemed to think that it would be Wednesday, clearing me for discharge on Thursday. Just because things have been moving so slowly, I'm betting on Monday.

A nurse just hand delivered a care package stuffed with fun goodies. To the mystery person that sent it, thank you. You've made my week and I can't wait to start coloring! This means so very much to me and I can't thank you enough for bringing a little fun into this tiny beige cubicle.

On that note, I'm off to color and defend the chex mix from Chris. :)

Sunday, October 21, 2007

D +145

Bummer...we made a really funny video post for today, just to let everyone know that we are very pretty positive and upbeat, but MDA's wifi network has uploads to youtube firewalled. I have tried for the last hour or two to send it through proxies, and even using my Treo as a cellular modem and no-dice. Take my word for it...it was funny and you would have laughed. So just go ahead and laugh, giggle or chuckle and then we can move on.

Done? OK then.

Seriously though as soon as I have a reliable Internet connection I'll post the video.

Here are Ann's labs for the day (plus some new values we might start including):

WBC 4.1 K/uL
RBC 2.84 M/uL
HGB 9.2 G/DL
PLT 343 K/uL
ANC 3.26 K/uL
LDH 579 IU/L
BUN 5 MG/DL

Overall things look good on the hematopoiesis front. Ann's WBCs have recovered from the little dip they had a couple of days ago. Her RBC numbers and HGB are starting to recover. Speculation on this is that the viral load in her blood may have been diminished by the Rituxan. I asked the attending doctor about this, but he just doesn't speculate on how treatment is going. Thats fine, but I feel like we go off on the wrong foot with him.

The last two numbers LDH and BUN have been of some concern to me over the last couple of days so I wanted to take a moment to talk about them. First Ann's BUN (Blood Urea Nitrogen) has been low since we came here to MDA. Most days it was 2 or 3 MG/DL, but today it has jumped up to 5 MG/DL. Since Ann wasn't eating due to cramps and diarrhea and BUN is a marker for malnutrition it makes sense that her levels would be low. Now that Ann has started to get her appetite back we are starting to see a gradual shift back towards normal. Which in this case is anything between 8 and 20 MG/DL.

Next LDH, which we've talked about before. It appears that her LDH levels have begun to fall. They started in the 400's and gradually began to rise after coming back to MDA. They spiked a bit after the 1st dose of Rituxan (600's). Now they appear to be falling back to the mid-high end of normal (313 - 618 IU/L). Because LDH is made when cells die off, the spike around the Rituxan infusion could mean that the PTLD is reactive to Rituxan.

We got a little news about Ann's last BMA from Friday. Her differential counts are back from pathology, but the attending doctor is hesitant to hand them to us until a full work up has been done. This is because he is worried that the PTLD could have gotten in Ann's new marrow. Not that it has, just that it could have. In the same was it is possible for you to get up and go into your kitchen and make yourself a ham sandwich, not that your going to or will. Anyway, the news he reluctantly parted with was that Ann has 1% blasts in her marrow. Which means that it looks like her baby stem cells are stable and doing their job. We will find out the final results from pathology Tuesday.

Ann's appetite continues to get better. She has gone from throwing up jello and soup for the 1st week we got here to eating almost an entire sandwich at a sitting. Her tummy still gets weird and I try to avoid eye contact or conversation while she's eating least I say something that sets it off. Right now I'm cautiously optimistic that the batter appetite and the apparently smaller node on her neck is a favorable sign.

Last but not least...


Ann and I have been through a lot in the past 10 months, but it's nothing compared to what others are going through. There is a little 9 year old boy in California named Dale Inouye who is suffering with ALL. He has been through chemo and relapsed. Then he underwent a transplant at UCLA using his brother's marrow, which allowed Dale several more months in remission from his disease. Unfortunately his family learned recently that Dale's leukemia has returned in a very aggressive way.

We really hope that Dale gets a chance to undergo another procedure that will bring about a durable remission for him and cure his leukemia. The big insitutions like M. D. Anderson are becoming much more aggressive in trying procedues like Double Cord Blood Transplants to treat relapsed resistant leukeima.

We were always struck by the commitment and love that Dale's parents and family showed for him and in reading the blog they kept for him. Ann and I would often draw strength from Dale's blog while we sat in the various waiting rooms of M. D. Anderson hoping we would get approval for her transplant. In those very dark and frightening times we were always encouraged to see the progress Dale was making on a daily basis. In addition we felt like we were allowed to share in the love and caring that his family has for him. I'm not sure we would have made it to where we are today if we didn't have Dale's story and pictures of his happy little face to brighten our lives.

Please visit their blog and let them know that other people are keeping them in their thoughts and wishing Dale well.

Friday, October 19, 2007

Day +142

The puce/beige walls of my hospital room are beginning to feel homey in a strange sort of way. I'm hoping that I'm not becoming institutionalized.

I had my bone marrow biopsy bright and early this morning. This means that I didn't have the nasal "tumor" biopsy, which is fine by me. When I started thinking about the logistics of going in to get a nice big chunk, I started worrying about what angle the doctors would have to go in at. Also, there was a resident that was just way too eager about getting in there. I don't mind being a learning experience, I just don't want some freak getting too excited with a scalpel that close to my brain.

Two very small ladies performed the BMA and if you've read past blog entries on the procedure, you know that it makes it just a little more painful. They had to go in four times to get a bone sample because she couldn't get a hold of the sliver that she'd singled out. Not fun and my bum hurts. They say the best remedy for the pain is walking and I've already walked a mile and I can assure you that there's been no change.

The attending physicians have been by to examine me and the primary transplant doctor seemed pleased. When he palpated the tumor in my neck he exclaimed, "Interesting." I had to ask for clarification, since you never know which way they might be going. He said it was good because it was harder to feel the lump. I'll take all of the good news that I can get. I'm tentatively scheduled for another dose of Rituxan on Monday or Tuesday and then I'm off for another CT scan. I should probably start thinking about the flavor of barium drink I want now. Citrus is pretty unpalatable and apple tastes strange. This leaves me with berry and bananna. I think they also offer chocolate, but if memory serves me correctly, it tastes like exlax.

I managed not to vomit yesterday, only to ruin my image today by vomitting after a hearty breakfast of vanilla boost plus. My poor nurse has definitely been put through her paces with me. Chris is as worried as ever. He was hopeful that my GI tract was rebounding after my first treatment. The nurse reassurred him that it never stopped working. It's only been challenged by all the little knoblets taking up residence.

On a bright note, I finally convinced Chris to get me gum. I haven't chewed a piece in over 10 months and having it again has been heaven. It's been so long, I have to make a point of not chewing with my mouth open and smacking like a child. I can't report on anything else, as it's been a rather slow day. That's the way we like them.

Susan, I wanted to email you, but there's something weird going on with the servers here. I really appreciate the offer of the sleeve for my PICC line. I also make a mess of covering it up for showers. Unfortunately, I don't think my line will be in long enough for me to make a go of it and I'd hate for you to have to go to the trouble of mailing it. I sincerely appreciate you thinking of me. :) I know you'll find someone close to home who can really put it to good use.

To all of the friends who have emailed and not received replies, it's not because I'm not trying. We're experiencing technical difficulties. Poor Chris has been trying to send out his resume for days to no avail. Caroline, he's trying to send one to you--also, loved the net note. It made my day.

I'll post later if we hear anything else. My regular doctor usually makes an appearance late in the day with updates and my preliminary bone marrow aspiration results should be in this afternoon. Sorry for any typos--spell check isn't working.

Thursday, October 18, 2007

Day +141

We got the official word on what's going on a few minutes ago. I have PTLD, which is a pre-cursor of lymphoma. The doctors keep emphasizing that this is not cancer and is only a complication. My leukemia has not reactivated, but I will be getting a bone marrow biopsy tomorrow to see what's going on with my graft. They just want to be sure that the PTLD hasn't infiltrated my graft.

The results from my CT scan showed that my abdomen is littered with lymphnodes growing tumors. This is par for the course with PTLD. This is also the reason that I've had extreme nausea and diarrhea. I'm not absorbing nutrients like I should. My attending physician has decided to cancel the surgery scheduled for me for tomorrow. The head and neck guys were going to go in and get a big chunk of the tumor growing in my sinus cavity. Here I thought it was just a giant plug of snot. Silly me.

I received my first dose of Rituxan yesterday. It's side effects are similar to that of rabbit ATG. I got severe chills and they had to put something in my mouth so I wouldn't bite my tongue off. It was pretty bad. I had a fever all night in addition to the chills. The nurses have reassured me that the next dose will be easier to tolerate. I'll get one dose a week for a total of four weeks. This is preliminary based on how well the tumors react to the drug.

The test for EBV came back positive, which is how all of this started. The Epstein Barr virus infiltrated my defenses and just started wrecking the place. This is the same virus that can be responsible for mono in healthy people. I don't know where I picked it up from, but I do know that the cat's are off the hook. My doctor ran a test for cat scratch fever. I know she had to, but I still would have felt horrible if one of the kids gave this to me. The test for that came back negative.

The attending physician did remark that the node on the side of my neck and jaw seemed to have shrunk and I can confirm this. I'm experience significant sinus drainage and the speculation is that the tumor in my sinus cavity is starting to shrink and that's what's draining. It's so yummy to be me.

I will admit to being a little irritated at having "beaten" one cancer only to fall face first into the world's biggest pile of dog pooh. Don't get me wrong, I'm not having a pity party, or a "why me?" moment. I was just hoping for a little bit of a break and a chance to get my life back on track. It looks like I'll be in the hospital for a total of five weeks this time around. Feel free to email and post lots of comments. I only packed one book and it is horrible. I seriously thought that I would be getting out of here within a week. Silly me.

On the knitting front, things couldn't be worse. You really shouldn't knit something intricate when you know that you'll have interruptions every few minutes. The lace stole I'm knitting looks more like those sad little pot holders we all made during arts and crafts for mother's day. I'm still following through with it and by gosh, I'm going to wear it. Probably inside, with the curtains drawn and the lights turned down really low. But I'll still wear it. I've decided that when I get out, I'm finally going to try to knit a sweater. God help me. I'll have to seriously concentrate on that one. Knowing me, I'll choose the most intricate design that I can find, cavalierly ignoring the "expert" rating on the pattern in favor of my high intellect and over abundance of confidence. How do people put up with me?

It's almost noon and I'm still in my jammies. I'm waiting for a nurse to come in and wrap my arm up so I can take a shower. No telling when this will happen. The poor nurses are so over worked, I hate to bother them for something so trivial. I did get the PICC line in my arm and it did suck. The bright side is that they can get blood draws from it, so no more needle sticks. Or, rather, I should say fewer needle sticks.

Chris is being amazing throughout all of this. I know he's scared spitless and I wish that I could make things better. He's busy putting together things to keep me entertained and out of trouble. That's all I have for now. If I hear of anything else, I'll pass it along.

Wednesday, October 17, 2007

Day +140

Chris has insisted that it is my turn to blog today. I'm not exactly in the best mood, so please forgive me a head of time. My transplant doctor stopped in while I was out having a CT scan, so she got a lot of one on one time with Chris. It would seem that the protein levels in my blood have dropped which means that my body is going to start cannibalizing my muscles for protein soon. She suggested that he get me to drink a boost. I will drink the boost. When I am ready. Getting the little can pushed under my nose every few hours is making me dig my heels in and resist like a 4 year old. I have been complaining about possible being malnourished for a month and I'm just now getting lambasted. Please give me a break.

I had several large helpings of citrus flavored barium before the CT scan which has caused multiple tummy problems. My nurse gave me some Ativan before hand so I wouldn't throw up. Throwing up wasn't the problem. It was the other end. Go barium.

I'm getting a new line inserted to receive IV medicines. The stick line that I currently have isn't cutting it. The option of another CVC was presented, but discarded in favor of a PIC line. It's a line that runs up my arm. I hope it doesn't get in the way of the knitting, because I don't really have anything to do up here.

Poor Chris is getting manic with the not knowing. None of the test results are in and he lives for the numbers. I have a small surgery scheduled for Friday. The head and neck guys are going to be going in and taking out a larger piece of the necrotic "tumor", for testing. Can't wait. Maybe I'll get ice cream and pudding for most of my meals.

I don't have anything more to add. Chris may blog later if he learns anything else. He's been quite a trooper throughout this entire ordeal and I'm hoping it's all over before too long.

Tuesday, October 16, 2007

The Mouse that Roared

D +139



Rituxan is a monoclonal antibody derived from the spleen cells of mice exposed to B-cell cancer, and it comes from the same family of drugs as Rabbit ATG. Just like the rabbit drug, the mouse really packs a wallop!

Rituxan infusion finished up and Ann held up pretty good. She spiked a fever of almost 102 F and had chills so bad they had to give her 4 sets of warm blankets. Her teeth chattered so much that it was necessary to get her to bite down on a tounge depressor to avoid her biting her tongue through or chipped/cracked teeth.

Ann is sleeping Demerol flavored dreams next to my little fold-out cot right now and the nurses pop in ever hour to check her vitals. They assure me Ann is doing "well" (Superman does "good"), and there shouldn't be any complications.

Just found out that the abdominal CT Scan has been rescheduled to 1st thing in the morning. Hopefully the radiologist will have his report ready before the attending physician and transplant team make their rounds.

I think I'm gonna stay up tonight and watch Ann sleep.

Chris' $0.02

D +139

Today's blood work...

WBC 4.6 K/uL
RBC 2.74 M/uL
HGB 8.8 G/DL
PLT 437 K/uL
ANC 2.88 K/uL

No blasts or otherwise weird cells show up in the blood work. Now that that is out of the way let me give everyone the the details of what is happening right now.

MDA is 95% sure that Ann has something called Post-transplantation Lymphoproliferative Disorder or PTLD for short. It is a pre-cancerous condition that develops often because of infection by the Epstein Barr Virus. PTLD presents as a spectrum of problems ranging from Lymphadenopathy (swollen lymph nodes often painless and hard), diarrhea, and cramps. It is primarily detected by swollen masses in the head and neck of unexplained origin. It can cause lymphoid "tumors" in virtually every organ and if it is allowed to persist long enough it can progress into non-Hodgkin's Lymphoma.

So here is what Ann is dealing with right now. She has several swollen lymph nodes on the left hand side of her face. The most predominant is her superior deep jugular lymph node on her left side, which is swollen to about 2 cm and is hard and painless (this is what got biopsied yesterday. In addition there is a mass approximately 4 cm x 5 cm that is occupying her nasopharynx and abutting the base of her skull. The mass appears to be mostly made up of necrotic (dead) lymphoid tissue. These "dead" lymph glands have swollen and squeezed together enough to seal off her left nasal passage completely. In an around this mass is a thick yellow viscous mucus material that is made of up dead cells. Probably dead white blood cells, and the mucus has become impacted because the blocking lymphoid mass is not allowing it to drain properly. In addition to all this there are several Supraclavicular lymph nodes on her left hand side (near the collar bone) which appear to be necrotic as well.

So from all this I have composed a working theory as to what has happened. First let me lay out the time line of events:

On 9/21 Ann started running a fever and also complained of a little tickle in the back of her throat on the right hand side. Ann started Biaxin to combat what ever infection was occurring.

On 9/23 she had a single lymph node present on the left side of her jaw (near the suprajugular area). It was swollen and tender with a diameter of approximately 1 cm.

On 9/26 the lymph node had nearly completely resolved and her fever broke.

On 10/1 Ann reported a sore throat on the left side along with an increasing ear ache on the left hand side of her head.

On 10/3 A follow up with and ENT in Baton Rouge revealed an 1 cm ulcer on the left hand inside of Ann's throat. Additionally her throat was observed to be red. Ann began taking 1000mg of Valtrex.

On 10/4 Ann visited her local hematologist for a routine appointment. Her CBC came back with an elevated WBC count of 9.6 K/uL. Her HGB was 12.2 G/DL and her PLTS were elevated to 569 K/uL. LDH is 204 IU/L BR hematologist theorizes that this a lagging indicator of the new immune system fighting infection. He except it to clear up shortly. Ann has a single incident of sudden vomiting that night.

On 10/6 Ann notes that her appetite is not quite what has been. She has a incident of nausea after eating. She claims it is because of sinus drainage.

On 10/7 Ann starts to run another low grade fever which resolves itself. She again has another episode of nausea and vomiting after eating.

On 10/8 Ann is uninterested in eating and has several episodes of diarrhea along with persistent nausea. Late night she begins to run a fever which exceeds 100.5 F.

On 10/9 I returned her to MDA suspecting GVHD of the gut. At MDA her 1st CBC comes back with WBC of 4.4 K/uL , HGB 8.9 G/DL and PLTs of 342 K/uL. LDH was 431 IU/L.

OK so there is the time line. I suspect ( and remember kids, I'm a Mechanical Engineer and not a Doctor) that Ann picked up one, perhaps two infections around 9/20. The first may have been bacterial which was cleared with antibiotics. The second was an opportunistic viral infection. In theory that would explain the soreness of her throat first on the right hand and then on the left hand sides.

The viral infection attacked the left hand back of her throat and eventually entered her lymphatic system. The virus was probably EBV (although the tests are still not back on it yet), and in the process of it trying to replicate it mutated a white blood cell (B-Cell) in one of Ann's lymph nodes in her nasopharynx. One node drained into another, the malignancy spread and the nodes began to swell.

Eventually this put pressure on her ear canal and caused the ear ache she felt on 10/1. That persisted until the nodes drained releasing some internal pressure but spreading the contamination to a lower level of lymph nodes in her head and neck. The nasopharynx lymph nodes continued to swell and eventually blocked off the left hand sinus passage around this time.

Her new immune system may have mobilized to fight the viral infection as evidenced by the elevated WBC on 10/4. The WBC's produced at this time probably make up some of the very impacted mucosal material that is built up on top of the nasopharynx mass blockage in her left sinus. However, the critical damage was probably already inflicted by this point. A PTLD B-cell mutant had been cloning itself inside these inflamed impacted lymph nodes for approximately 14 days.

While I have no proof that the PTLD has not spread past Ann's lymph nodes to a more distant region of her body, I am hopeful. Principally because of the LDH levels that were recorded at Baton Rouge and the current ones at MDA. Neither level is elevated beyond what is the normal acceptable range. So I hope that the nausea and diarrhea is the product of necrotic drainage from the swollen lymph nodes and not tumor growths on her gut. Although I will admit that I have learned that PTLD can and sometime does manifest like that. We have a CT scan of Ann's abdomen tomorrow which should clear this up.

The hemoglobin and RBC drop in Ann's blood counts could be from the constant diarrhea she has been having. It is also a possible, but not very likely side effect of EBV running free in her blood stream. I am encouraged that her platelets and WBCs remain stable because I believe it tends to indicate that the problem has not affected her new baby bone marrow. If the PTLD was given time to advance to full lymphoma it undoubtedly would.

So in conclusion I think we are looking at a EBV viral infection that caused PTLD. Which in turn is limited to the head and neck. Low LDH numbers and Ann's marrow not being effected tend to support the assumption that this is an recent development and has not had more than 25 days to develop. Translation - I think we caught it very early and can treat it quickly.

So that's my theory...just remember you go to an ME to design turbines not for medical advice.

So what is MDA going to do about it? They answered that this morning. Rituximab (aka Rituxan) is the weapon of choice in fighting PTLD and it they are pretty confident that it will work. I understand the experience of getting it is similar to the Rabbit ATG that Ann got just before her transplant.

If thats the case then we are in for fever, chills, nausea, vomiting, rashes...fun stuff. They start the first infusion just as soon as the pharmacy delivers it to the BMT floor.

Wish us luck.


**Update**

Dr. Kebriaei just stopped by and has pretty roughly critiqued my theory. Turns out MDA is not 95% sure but more like 60%.

She still believes that the necrotic tissue and "abnormal cells" in Ann's lymph nodes could still be just a common infection. MDA's pathologists are working to get slides made and stained so that they can work out exactly what those necrotic cells are. Which as it turns out could be anything from simple dead cells (puss) to a rapidly dividing lymphoma. She still thinks that Ann's tummy troubles could be GVHD and will not rule out the possibility until the endoscope samples are back (still not yet). They are still going ahead with the Rituximab however, just to be on the safe side and because its not too risky.

Serves me right for trying to get ahead of the experts.

**Update II**

The Rituximab has arrived on the floor. Here goes nothing.
Day +139

It's me and I'm going to be perfectly up front. I feel rotten 24 hours a day. It's not like before with the leukemia. It's a new and insidious feeling that I could live without. One solid month of fevers, vomiting and diarrhea. I can't eat, or rather, one bite sends me into a hunched position with a stomach cramp and extreme diarrhea. Don't you wish you were me. I vomit at the strangest times and usually with no provocation. I heard someone make a weird noise with their nose on television and that set me off. I've dropped from a size 12 to a near 6 in a month. Worst diet ever.

The attending team had a few things to tell us today and none of it was what you'd consider "positive". I potentially have something called PTLD. It's not "cancer" per se. The doctor calls it a "complication". They both start with the letter "c" and involve me being trapped in the hospital. Perhaps I'm placing too fine a point on it, or some such.

To put it all in Ann-speak:

There is a lump on the left side of my neck roughly the size of a golf ball. It hurts because people keep poking it and sticking needles into it. When you look inside my mouth, it looks like my left tonsil is trying to invade my right tonsil. One side of my sinuses is completely obstructed, so breathing and talking at the same time happens to be my favorite past time. I have a necrotic mass of "yellow" goo in my left sinus. This is according to the head and neck doctor that did a flexible scope exam. He didn't want to touch it in case it was leukemic or what have you. I just suspect that I've been incubating that little pet for the last month. It hurts my stomach to drink water. It hurts to eat.

I have had scopes shoved into every available orifice and that is not an exaggeration. I don't remember the endoscopy or the flexible whatever you call it that went into my bum. God bless medication. The flexible scope of my sinuses and tonsils wasn't bad, but it was weird when the doctor started touching my tonsils with the scope while it was down my nose.

I'm losing muscle tone again. There is an IV in my arm. I get a new one every few days because they go bad and my arm starts to hurt.

Chris is trying to distract me with knitting paraphernalia. Poor guy has to go to a craft store and stand in no man's land trying to remember what I told him to bring back. I think I'll keep him around for a bit longer. :)

Monday, October 15, 2007

Abnormal Cells Found

D +138

Today MDA did a CT Scan and Fine Needle Aspiration (FNA) of Ann's "tonsil". It turns out not to be a "tonsil" after all, but some type of mass that just happens to be near the lymph nodes on her jaw line.

Our doctor indicated that the mass looked like a lump of necrotic tissue on the CT Scan.

The FNA of the mass showed it contained abnormal cells. Not enough were collected to perform flow cytometery so slides are being prepared. They will be ready Wednesday.

I would like to be optimistic, but this all but rules out GVHD, bacteria or viruses as the source of Ann's low grade fever, stomach cramps and diarrhea.

Saturday, October 13, 2007

The Fishing Expedition Continues

D +136

Today's labs looked good...

WBC 4.5 K/uL
RBC 2.72 M/uL
HGB 8.6 G/DL
PLT 372 K/uL
ANC 3.05 K/uL

Here is the list of things we were worried about yesterday:

1) Possible GVHD of the gut and or sinuses
2) Possible infection by something in the herpes virus family (EBV, CMV, etc)
3) Ann running a low grade fever
4) Ann losing weight because of lack of appetite and diarrhea

After a visit with the attending transplant physician and the head and neck specialist this is what our current list looks like:

1) Possible GVHD of the gut and or sinuses
2) Swollen tonsil
3) Secondary Lymphoma caused by a virus like EBV
4) Recurrent but isolated ALL
5) A 5mm nodule found in one of Ann's lungs which could be anything from lung cancer to a fungal infection
6) Possible infection by something in the herpes virus family (EBV, CMV, etc)
7) Ann running a low grade fever
8) Ann losing weight because of lack of appetite and diarrhea

I'll try to cover these point by point, but honestly I am pretty tired and a bit despondent.
MDA is on a "fishing expedition". Which means that they understand that why Ann came back (fever, diarrhea, etc) is normally caused by GVHD. However, as of yesterday evening they have not been able to visually identify anything that looks like GVHD after an endoscope. So they have cast the net very wide to see what, if anything turns up. This morning the attending physician delivered the above laundry list of things that they have discovered or are checking on. I'll cover the scariest first.

Secondary Lymphoma is something that can happen to patients who have had their immune system suppressed or compromised (e.g. a bone marrow transplant). A virus like Epstein Barr (EBV) or Mono can enter the body of such a person and attack a type of white cell called a B-Cell in the lymph glands. The goal of the virus is to make more copies of itself, but occasionally this goes haywire and the result is a mutation that gives rise to a clone. Which we call Lymphoma. If left to its own devices this clone will begin to proliferate in much the same way as any other blood cancer would until it eventually infiltrates the bone marrow and displaces all the healthy cells there.

Why are they worried about it? Before we came to MDA, Ann came down with a virus which presented with a sore throat, ulcer in her throat, and a raised lymph node on the side of her neck. All of these cleared up, but on returning to MDA one of the first things they did was a CT scan of her chest, head and neck. From that they learned that one of Ann's tonsils is still swollen and the tonsil is part of the lymphatic system. I was surprised to find out that Ann still had her tonsils. I thought that everyone had them removed at childhood as a routine procedure, but I guess not. What MDA plans to do about it at this point is less clear.

A head and neck specialist who paid us a visit today scoped Ann and discovered a large plug of thick yellow mucus and tissue in her sinus cavity on the left side above her swollen tonsil. When he told us about it Ann asked if he could just blow it out or extract it, because it's doing nothing but contributing to her misery.

He said no because it is possible that the leukemia that Ann went through the CBT to get rid of was in fact forced out of her bones and blood, but didn't get completely evicted. This yellow crap could in fact be leukemic cells on the lamb from the baby stem cells. Sucking, blowing or manipulating them could spread them to a spot that Ann's new immune system isn't prepared to contain them. Thus allowing them to spread. MDA plans to do a biopsy of the "snot" Monday or Tuesday. Results should take another day or two, then maybe they can extract it.

Next is my favorite so far, the Single Pulmonary Nodule (SPN). This one hit us completely out of left field and put both of us at DEFCON 2. Turns out that back in August MDA did a CT scan of Ann's chest when she was readmitted to the hospital for a little fever. At that time they found a 3mm nodule and didn't mention it to us. Now it turns out that the 3mm diameter nodule has grown 2mm or at least is being imaged from a slightly different position.

Assuming it is approximately spherical (V = 4/3 *pi * (d/2)^3) in shape it would represent about a 5 fold increase in volume in roughly 60 days! So what is it? It could be fungal, bacterial, GVHD, viral, or lung cancer.

Wow! Imagine that: leukemia, transplant and then lung cancer. If you want to know what contemplating that scenario is like go into your back yard and dig a 30 foot wide by 20 foot deep hole in the ground. Fill the hole with water and drop a 15 foot very hungry tiger shark into it. Next put a metal extension ladder in across the hole and walk out onto it holding a lamp from your living room. As the shark swims below you, have a friend or neighbor grab your garden hose and randomly spray water at you...make sure he aims for the plugged in lamp you're holding. That just about approximates the overall if not specific effect.

The attending doctor this morning seemed to think it was probably fungal, but they don't have a decided course of action yet. I'm planning to speak to Dr. Kebrieai extensively about this Monday. I have seen too many people on the net and a few here at MDA succumb to lung complications to even risk the life of my best friend in the world and soul mate on it!

So finally we come to the end of the list which seems kinda mundane now. The fever and diarrhea were the reason we came into MDA in the first place. Ann is still having diarrhea and is still periodically running a low grade fever. Some bacterial cultures have come back negative, some are still pending. The viral cultures are all still pending as far as I know (they take longer to run). The biopsy's from yesterday's endoscope will be ready sometime early next week.

I just want MDA to identify the problem so they can treat it and Ann can go back to eating. She has lost 14 lbs in the last two weeks or so and is miserable. Maybe it was wrong for us to expect a quick resolution based on the relatively smooth sailing we have had up till now, but we are getting sick of the fishing expedition.

Friday, October 12, 2007

Update

D +135

Update:

Ann got her endoscope today and the preliminary results look normal. Biopsies were taken from different points along her GI tract and those are being sent to the lab for analysis. However, there were no visual signs of GVHD or anything else out of the ordinary.



We got to meet with Dr. Kebrieai today and discussed this whole situation with her. Like us she suspected GVHD but, I get the feeling that she has changed her mind. When we got back to the room she had a lab tech waiting for us so she could draw blood for the micro biology lab.

Not sure what the draw was for but Dr. Kebrieai did mention earlier checking for Clostridium difficle as a possible source of Ann's tummy trouble. However, you don't need a blood sample to check for it. C. diff is basically a normally harmless bacterium that is found in the GI tract where it helps in digestion. However, given the right chance it can grow out of control and start producing toxins in the intestines which lead to cramping and diarrhea. According to what research I have done, it is the one of the most common infection picked up while in the hospital.

Lastly I don't want anyone to get the impression we are in peril here or Ann is on the verge of going into the ICU. She is miserable, irritated, and frustrated but no-one has given us any impression that we are even approaching a anything near or like a real crisis.

GVHD?

Day +135

WBC 4.1 K/uL
RBC 2.59 M/uL
HGB 8.3 G/DL
PLT 323 K/uL
ANC 2.47 K/uL

Third day in the hospital and not much has changed. Ann is still running low grade fevers and they tend to happen in the morning and at night. Low grade is defined as below 37.8 C or 100.4 F. She is still having problems eating and can't hold much of anything down. She wants to eat but 1 or two bites of anything results in either uncomfortable swelling of her abdomen, a rush to the bath room with diarrhea or both.

Ann has been on a 24 hour IV drip of Zosyn and Cipro since we got here and they have been growing cultures taken from her nose, blood, etc, to see if there are any bacterial or viral bugs involved in this. As of yesterday all the bacterial cultures were negative. Meaning nothing of substantial note grew in the petery dishes. That rules out bacterial agents.

Viral is a different matter. In transplant patients there are a small list of viruses that commonly cause this type of trouble. Most of them are members of the Herpesviridea taxon. However viruses take much longer to culture so the jury is out on there possible involvement until next week.

Apart from growing cultures the only other way to find out what is going on inside Ann is to "look". Thats done with a endoscope and we where supposed to get to see the gastroenterologist yesterday to get that done. However, MDA is a big place with lots of patients so they got over full and we got bumped until later today. My hope is that they will be able to tell what is going on from visual inspection and will not have to biopsy anything. If they do then we will have to wait until sometime next week until the labs here finish analyzing it.

More later.

Wednesday, October 10, 2007

Day +133

Our friend Liz passed away on Monday. We never actually got the chance to meet her, even though she only lived 30 minutes away. Sometime back in March, our friend Joe posted a link on the Advocate that directed people back to this blog and that's how we met her. Liz was a BMT survivor and was released from Tulane hospital the day before Katrina hit. She reached out to me after reading the blog and we got to know each other through emails. Her emails were always thoughtful and informative and most importantly hilarious. I always looked forward to getting at least one a week from her and recently, we had begun to make plans to meet. Just after I arrived in Baton Rouge, she went back into the hospital with pneumonia. Her husband, Richard, kept us up to date on what was going on with her from that point. You all know the rest. I will always regret not having met Liz personally, but I'll be forever grateful that she took the time to reach out to me. Please pray for her family during this time.

As for what is going on with me...I've been vomiting since last Thursday and have been having a hard time keeping anything down(or in for that matter). You all know about the sore throat and stomach issues. Monday night I began running another low grade fever. Since it started so late in the evening, I think Chris decided to wait until morning to worry about it. It went from 100.2 to 101.3 the next morning. That's all it took. Chris had me packing a bag for Houston. We were on the road at 8 AM and due to some technical difficulties, were in Houston by 1:30. I was admitted to the MD Anderson Emergency Care Center--this is rather like the ER at a regular hospital. Even though MD Anderson specializes in treating cancer, it is always filled to capacity. They are currently adding floors to the hospital, but in the mean time, the worse case scenarios are the first ones to be admitted. Chris and I waited there until 2AM the next day for a room to be made ready for me. I'm currently writing to you all from the 10th floor with a lovely view of the Baylor College of Medicine. Aside from the glorious HVAC units on the building next to me, that's all there is to see.

I've continued to run a low grade fever all day and have been suffering with severe diarrhea. My appetite is non-existent since my stomach immediately begins to cramp as soon as I eat something. I'm starting to suspect GVHD of the GI tract. The attending physician wants to wait for a course of antibiotics to run 24 hours before jumping to that conclusion.

What's that, but you have no central line, Ann? No, they removed my CVC when I was discharged from the transplant over 30 days ago. I still have the divot and scars in my chest to prove it. Chris is thinking a little plastic surgery may be in order. Throw in a brow and chin lift and I might get on board. Much to the chagrin of all of the nurses, an IV line has to be started the old fashioned way--with a long needle. They may hate having to find a viable vein, but I hate it more. The sensation of the needle spelunking under your skin with your frightened veins rolling for their lives, desperately trying to avoid a stick. Did I mention that these lines don't last very long? I've only been here for 2 days and I've already had three lines. Ouch, Elliot.

For once my magnesium is too high. Can you believe it? They've decreased my dosage in the hopes that my stomach cramps will subside. No luck yet, I'm afraid. My other numbers are as follows:
WBC 4.4
RBC 2.77
HGL 8.9
ANC 2.81
PLT 342

That's as good as it gets. I'm not relapsing according to the numbers. As far as I can tell, I was extraordinarily lucky with all of the events that occurred immediately after the transplant. Maybe life is just catching up to me. They won't know if this is GVHD until they've done the scopes. Endoscopy and colonoscopy. Trust me, there will be ativan involved. If this is just a combination of a viral and bacterial infection, that's life. My baby stem cells need to learn to stand up to the bullies. I'd feel better if they were girls, since I'd know that they'd get the job done under budget and on time. :) Chris assures me that the boys will do just as well. Since they're a part of me, I fully believe it.

So, I continue my life as a lady of leisure, only in the exotic confines of an MD Anderson hospital room. This means that I will miss our friend's wedding in Baltimore. I'm very sorry, Wiley and Mara. Please send pictures. I was really looking forward to toasting you all and having a post transplant dance with my honey. This also means that the side trips to New York and New Jersey are off. Sorry, guys. We'll figure something out after this is all done. It'll give me time to finish knitting a few things for the trip. I have a CT scan in a few minutes, so I'm off. Feel free to entertain me with lots of comments.

Friday, October 5, 2007

Day +128

My throat and ear appear to be on the mend. Thank you, Valtrex. Every time this prescription gets filled, I get a little pamphlet on herpes. This makes me wonder what the pharm techs must be thinking, since I have to get it filled once a month. I know, I have bigger things to worry about.

I'm completely congested on the left side of my face and it's making me miserable. Nothing that I've done helps and no amount of nose blowing produces anything. I can feel it occasionally drain into my stomach, which is a supremely delicious feeling. This generally happens fifteen minutes before I vomit. As if things aren't complicated enough. I didn't manage to hold anything down yesterday, which made me feel dehydrated and miserable today. I made a point of drinking tons of liquids which only made me feel worse.

I've managed not to vomit today, but the record is starting to look a little shaky. Dinner consisted of pancakes and water--my choice. I thought the pancakes would be easy to digest. Halfway through the meal I started to feel queasy and had to stop eating. Chris told me I just looked pitiful. That pretty much sums up how I felt. I have one more round of pills to take tonight, and I'm worried that I won't be able to keep them down.

Chris' kitty has been keeping me company all day. If I stay still long enough, she'll climb onto my lap and pin me down for an hour or two. I stopped fighting her and just started taking naps whenever she did. It's worked out rather well. We haven't been able to get a decent picture of her to post, so you wouldn't know that she is enormous. Hence, her nickname: My Baloney. It's an homage to a character on 30 Rock and it's very apropos. Her real name is Etsuko, but we're convinced that she doesn't realize it.

Chris and Dixie are pulling long faces around me. I know that they're just worried about me. I wish that I could reassure them more effectively. I just feel like pooh right now. Not "cancer" pooh, but allergies/flu/cold pooh. I have a follow up with my ENT next week and he should have the results from the throat swab.

I'm off to take the last of my medications for the evening and then it's off to bed for me. The life of a recovering CBT patient is nothing if not exciting.

Thursday, October 4, 2007

Platelets as Refrigerator Art

Day +127

WBC 9.6 K/uL (4.5 - 10.8)
RBC 3.88 M/uL (4.2 - 5.4)
HGB 12.2 g/dL (12.0 - 16.0)
PLT 569 K/uL (150 - 350) - more about this below
ANC 7.2 K/uL (1.5 - 10.0)

OK so today had our "normal" Thursday appointment at the hematologist's office at Mary Bird Perkins. I wasn't expecting this to be a big deal, but it turns out that the LPN from our last visit gave us the wrong day for our appointment. We were actually supposed to be showing up tomorrow, and our presence caused a bit of heart burn. We were told by reception that we would have to wait a long time to see the doctor since because we didn't have an appointment for that day we were being treated like walk-ins. I started to complain about the us being given the wrong day for our appointment, but somehow the receptionist only understood us being angry about having to wait to be seen.

Totally missed the point, but they hauled out the office manager anyway to reassure us of something we were no concerned about to begin with. When I tried to explain what was bugging us again...the wrong appointment and conflicting information from the LPN, I underlined my concerns by stating our confidence in MBP was falling. She looked at me like I just spontaneously grown a second head and "apologized" that a scheduling error was causing us to loose our faith in MBP. If the overall effect sounds like it was thinly veiled sarcasm then your on the same wavelength as me and Ann.

So we waited and eventually did get in to see the hematologist. Who by the way couldn't have been sweeter if he had taken a bath in sugar before he came in. He started off by covering all of Ann's concerns, checking to see if the node had come back, checking her ear and throat. He asked about the ulcer the ENT had found and if a swab was taken. After which he verified it's presence himself. Then he got all of the ENT's information so that he could contact him and share test results. Basically this was a 180 degree turn around from what we experienced Tuesday and this morning from the administrative part of his office.

He also said that Ann's blood work looked great. The jump in WBCs from last weeks 7.8 K/uL to today's 9.6 K/uL is most likely due to the baby stem cells reacting to the virus or whatever is going on in Ann's throat. Her platelets are also unusually high, well above the normal range for healthy adults. However, the doctor did note that a common first reaction to sickness by the human body is to start pumping out platelets en-mass before increasing white blood cell production. So the current platelet value of 569 K/uL isn't anything to worry about. I joke with Ann that the baby stem cells have mastered platelet making and are just cranking them all the while screaming "Look what I did Mom!", in the hope that one or two of them get hung on the fridge. By the way Ann reports that her ear no longer hurts and her throat is feeling much better. However, she has vomited once today due to excessive mucus drainage...yum.

We are getting ready for our trip back to Houston next week for Ann's first follow up with MDA and after that a trip to Maryland and New Jersey/New York. Providing MDA doesn't tell us not to. They gave us the go ahead at the beginning of September, but these little episodes Ann has been having may change their mind. I really hope not though. There are lots of people to see on the trip that we have to say a very heartfelt thank you to.

Wednesday, October 3, 2007

A little something extra

I had to add my two cents to Chris' post. The person that I saw at Dr. Bienvenu's office is an LPN, not a PA. My ear does freaking hurt. I know why kids weep when they don't feel well. They don't have the words to articulate what is really happening. They can say, "hurt" and howl in frustration when the grown ups don't understand. I can articulate the pain, but it hurts too much to do so. There is a reason we don't remember childhood illnesses. We're better off not remembering. I know I'm lucky to be able to complain about this. I almost died because of an internal malfunction. I suspect that I'll be reliving all of my childhood episodes and I'm not exactly excited about it.

I've complained about my throat for the last three weeks. I brought it to the attention of my local doctor repeatedly. Yes, a sore throat generally doesn't mean anything in a normal person. I take meds that suppress my immune system. I can't fight off the things a "normal" person can. The team at MDA jumps all over me at the slightest sniffle. If I sneeze during an appointment, I get a nasal wash. Do I have to fall on the floor and have a flailing tantrum to get my local doctor to take me seriously? I am by no means a hypochondriac. I thought I was being a wuss last December when I couldn't handle my regular life. Ha, little did I know I had leukemia.

Yes, I did have a breakdown yesterday. I couldn't stop crying because I was so angry and frustrated. It was absolutely demoralizing to go into the local office only to be told that I could be referred to an infectious disease specialist. Are you kidding? You could have saved me a trip and just told me that on Monday. Instead, I was told to come in on Tuesday to have blood drawn. It was a complete waste of my time and money. Don't patronize me and don't take me lightly. By the way, try listening to the patient. I detailed my problem on Monday. My throat still hurt and I had a serious ear ache. The LPN was actually surprised when I asked what I should do about the ear ache. Yes, genius, I do know that the ear and the throat are connected. That little bit of knowledge is what made me wonder about the infectious disease specialist.

I should have been referred to an ENT. I wanted to see an ENT. Unfortunately, I don't get to just call whomever I'd like. I have to let my primary doctors know what's going on and then follow their advice. This is all based on a desperate want to live. I don't want to force the marrow out of my bones because I did something stupid. My doctor at MDA is johnny on the spot with treatment. Unfortunately, she's 5 hours away. She's always prompt with calling me back and she's always thorough in her questions. So now, Chris and I have some choices to make about my local treatment. Do I assemble a team of local doctors to treat my various ailments? How can I guarantee that they'll communicate with one another? I've already had several examples of how lack of attention to detail can make things worse. I happened to have read the packet that my transplant doctor sent over to my local oncologist. I suspect that members of his team have not. Trust me, I know.

Please forgive my rant. I'm tired of feeling awful when I know all of this could have been cleared up three weeks ago. I sincerely hope that I don't blow up at my weekly appointment tomorrow. It would be a little embarrassing to be escorted out of Mary Bird Perkins by security. There's always a first time.

Ouch! My %&#@ing throat hurts!

Day +126

Hi all, we have a bit of drama to report. If you remember about two weeks ago Ann started running a temperature, then got a little sore throat, and a raised lymph node (scared my silly). Most of these resolved after a week of Biaxin and the twice weekly Bactrim she is already taking.

I say most because the sore throat didn't really resolve. The "sore" spot moved from the right side of her neck to the left, where the node came up. Once it got to that side of her throat the pain it was causing slowly started to diminish. Then two days ago Ann started to have a "slight" ear ache from inside her left ear.

The ear ache and the sore throat gradually began to increase in intensity until yesterday she was telling me that she was uncomfortable speaking. The title of today's post is pretty much a direct quote from her.

So we called MDA and asked what to do and when they got back to us they said to go in to our local hematologist office and then call them back. So we called Mary Bird Perkins in Baton Rouge and got an early appointment with our hematologist's PA. That should have been my first signal that we where in for some serious frustration.

So we get in to see the PA after a full blood draw, and she just starts going over Ann's CBC results (the CBC results looked very good, I just forgot to ask for a copy). At which point we have to jump in and "remind" her that the reason we where there was because of the throat and ear. She acted surprised and then looked inside Ann's mouth and noted that her throat was indeed "red". Then she made the dismissive and condescending observation that "Oh...the throat and ear are connected. You should really see and ENT". Brilliant!

So do they have one they can refer us to? No. Do you want us to follow up before our next scheduled appointment? No. At this point both Ann and I are getting that uncomfortable sinking feeling. In particular I am starting to be struck by the impression that MBP in Baton Rouge is a mill that is geared to only service geriatric cancer patients. I know that is not possible to direct.y compare institutions like MDA to ones like MPB as one is seriously better funded.

However, when we are taking about a condition as serious as recovering from a BMT you would expect some continuity of care from even smaller organizations. That means even if you don't have ever medical specialty on staff like MDA does then at a minimum you should at least provide a list of co-operating specialists who you regularly work with. Older patients have loads of doctors that they where probably seeing well before they got sick. This just isn't true of 32 year olds. Ann got so frustrated by this that she started crying.

Anyway after lots of waiting we did get to see and ENT. Who it turns out was the same one that sent Ann's blood out in December on a hunch something was wrong. So he was a bit surprised to see her again. To his credit he quietly listened and Ann and I detailed out her medical history for the last couple of months and the current prescriptions she was on. But you could tell he was a bit freaked out by the entire thing. I'm sure not many CBT patients walk through his door.

He did a basic exam and discovered a 0.5 to 1 cm ulcer on the back left side of her throat. He believed it was viral but, confessed he was ignorant of GVHD. So to be on the safe side he took a swab and prescribed 500mg of Valtrex (she is already taking 500mg, so now she's on 1000mg total) and a Lydicane mouth wash to help in case the pain got too bad to Ann to swallow. Thank goodness it hasn't. What kills me is that the ENT found the ulcer in less than 10 seconds with a light and a tongue depressor, where as the PA at MBP has looked at Ann's throat twice and missed it.

Since the ENT is not plugged in with the Hematologist at MBP or MDA we are going to have to manually update everyone with the results of the swab. Frankly I am starting to get envious of people who live near the major institutes. Anybody near MDA, Sloan, Dana Faber, or City of Hope need an mechanical engineer/construction manager or looking to sell a house?

Ann has been avoiding talking and says that the pain is better than yesterday. Hopefully it is clearing up. However if it doesn't by Friday or Saturday we have standing orders to return to MDA and check in at the ER until we can get readmitted into the hospital.