Day +173

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

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

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

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

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

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

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

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

The results are in

Day +171

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

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

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

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

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

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

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

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

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

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

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

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

Happy day +166

Day +166

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

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

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

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

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

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

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

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

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

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

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

That sums up my weekend.

Back home again

Day +162

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stuff that didn't get posted

Day +158

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

Me and Ann waiting to go back into the hospital

Ann getting her vitals taken at the MDA EC

Ann just before an CT Scan

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

Etsuko the Cat: Ann's cream colored nemesis!

Ann embraces her inner "sheepyness" with new curly hair

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

Day +156

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

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

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

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

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

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

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