A special treat

A few weeks ago, my friend Heather called me with a question. We've been friends for 24 years, ever since she was seated at my table in home room. I haven't seen her in 15 years, but she always manages to make sure we stay in touch. She wanted to know if we could meet when she, her husband Jeremy, and their two little ones passed through Baton Rouge on their way home from visiting family.

I had to clear it with my transplant doctor since the girls are literally babies. Mia is 2 years old and Kiley is 8 months. I'm still taking immunosuppressive drugs and have been advised not to be around children. Dr. K. said it would be fine so long as the girls were healthy.

Heather has been manically trying to keep the girls well so we could pull this off. I'm thrilled that she pulled it off, since we were able to meet for lunch today and I finally got to meet her husband and two beautiful little girls.


At the Acme Oyster House. Heather and Jeremy got there a little ahead of us and managed to snag a table ahead of the lunch rush. It's a game day for LSU, so the place became standing room only shortly after we got there.





















We went for gelato after lunch at Latte e Miele. The gelato is unbelievably good. The owners are from Rome and they definitely know their stuff. The gelato is all hand crafted from fresh, local ingredients and the owners are always behind the counter with a smile. If you're ever in Baton Rouge, you should definitely drop in and have a bite or two.









I know it looks like I'm about to drop her, but I'm actually playing airplane with Mia. A few months ago, I couldn't pick up a 10 pound cat. According to her mom, Mia is 30 pounds of squirmy, giggly goodness. I had a blast playing with her and making her laugh.










































Heather and Jeremy



















Mia and her strawberry gelato. I know just how she feels. I think I make the same face while I eat gelato.





































Kiley ate most of Heather's gelato. Every time Heather tried to have a bite herself, Kiley would fuss. Then she started staring down her sister's cup. She's definitely a girl after my own heart.

Our second turkey day post transplant #2

I was going to title this post "Our first turkey day...", then realized that it wasn't. Last Thanksgiving, I was still in the 100 day post transplant cocoon, living in a one bedroom apartment in Houston and severely restricted. Chris and I celebrated with steak and mashed potatoes. My steak was cooked to perdition to guarantee safety and the mashed potatoes were instant. We were just so happy to be together that it didn't matter.

This year, we also celebrated alone, but it was blissful since there was no set schedule and it didn't matter if the asparagus finished cooking before the potatoes. We finally bought dining room furniture after 15 years of either hunching over the coffee table or eating at the pass through.

The table and chairs arrived two weeks ago, with a hitch. Four of the six chairs had one short leg each. The delivery driver caught the defect on one of the chairs and left it on the truck as a refused delivery. I didn't discover the other three until after he'd left. I won't pain you with the finer details of dealing with the furniture distributor's service department. Ultimately, four new chairs were ordered with the intention of swapping the defective ones out.

The four chairs came in last week, with the same defect. The service manager ordered another four chairs and replacement legs one week ago yesterday. I haven't heard anything since. I'll name names in another post depending on how things resolve. Ultimately, there are two chairs which is the perfect number for just us at the moment. I would like the other chairs, though, since they have been paid for.

We had a really nice day and I managed to sneak in a nap. Aside from a GvH flare up of my skin, everything else seems fine. My head and torso are covered in a fine rash in varying stages of intensity. My forehead and abdomen are suffering the brunt of my immune system's aggression. You won't be able to see it in the pictures, but trust me, it's not pretty.

I've been using minoxidil for almost a month now and have noticed that my hair isn't falling out as much. I probably won't see any new growth for another month if I get any at all. In the mean time, I'm better able to camouflage the diffuse thinness. Again, the pictures won't show the finer details. It looks like I have a full head of hair, but trust me, I don't. I still have the monk's tonsure and overall thinness/diffuse baldness. If new growth doesn't start happening by the end of week 8, I'll get serious about a wig.

Believe it or not, that's my plate.























My sweet hubby.


























This is one of my favorite wines. It's got a really agressive, rich flavor with just the right amount of earthiness and a smooth, smoky finish. I discovered it four or five years ago when it was a paltry $6 per bottle. This is the first time that I've bought a bottle since I was diagnosed and it took me forever to find it since the label has changed since last I saw a bottle. It's now $14 per bottle which leads me to believe that the secret is out on this little gem. I'm not allowed to have alcohol yet, so Chris had to fly solo on this one.












It's me!























Me, again.























Sweet potato pie and my hand vac that I forgot to put up.






















Akiko's first Thanksgiving. Once she got a taste of turkey, she had to have as much as she could beg off of Chris. Believe me, she was persistent. Etsuko wasn't interested. She's a big fan of cat kibble and would rather have that over people food any day. That doesn't stop her from wanting to see what's on your plate or begging for a little of what you're having. Very rarely does she eat people food.

















I'm forever having to coach Chris into smiling for pictures. He does the same one everytime he's asked to pose for a picture.

One of my most absolute favorite things is when Chris gets a serious case of the giggles. I love his joie de vivre when he loses himself in something silly and can't stop laughing. It's usually at something I've done, or inadvertently said. I managed to get him going while I had the camera out. He's requested that I not post the pictures, but I'm afraid I have to for posterity's sake. You get to see him smiling candidly and it's one of my favorite images.



































Lastly, this is my little brother, John. My sister-in-law forwarded this to me yesterday. John's just finishing Navy bootcamp and I couldn't be more proud of him. He's a southern boy freezing his tail off in the mid-west at the moment. I know Mandie can't wait to see him once he graduates.

He is the spitting image of our dad, who I know would also have been proud of John.

Recap postponed

I am so full of carbs and butter, I won't even attempt to post something decent tonight. I will post pictures tomorrow.

Hope everyone had a fabulous day!

Pre-turkey day

The turkey has been brining since Monday, the sweet potato pie and corn pudding have been baked. The veggies for the dressing have been chopped and sauteed. The rolls have been formed and are being held in the fridge. There's just a handful of things left to do which should make for a relaxing day tomorrow.

I'll post a recap tomorrow night. Until then, I hope everyone celebrating Thanksgiving has a wonderful day full of blessings. For those who don't celebrate, the same hope still applies.

Numbers

WBC: 6.1 k/ul

RBC: 3.48 M/UL

PLT: 387 k/ul

ALC: 1.4 k/UL

ANC: 3.8 k/ul

ALK PHOS: 192 IU/L

AST/SGOT: 27 IU/L

ALT/SGPT: 45 IU/L

The last three numbers pertain to my liver and are trending down nicely. The AST/SGOT is within normal ranges. The ALT/SGPT is on the very cusp of being normal and the ALK PHOS is a little over double the high end of normal as opposed to being three to four times normal as it has been in the past. The next checkup is in Houston two days before Christmas.

Muddling through

A few years ago, Chris and I took a long overdue trip to California to see my extended family. While we were there, a group of relatives, including my tiny grandmother brought us to a small Buddhist temple to pay our respects to my grandfather who had passed years earlier. Chris and I speak little to no Vietnamese and so we tended to orbit one another while my aunts and uncles visited with the monk holding vigil that day. For a short period, I found myself standing with one of my younger aunts while she had a conversation with the smiling monk, listening to the sing-song cadence of his voice as he spoke at length. There was a long pause during which my aunt started to giggle. As it turns out, the monk had been speaking to me the entire time I'd been daydreaming and looking around the temple.

My aunt explained to him that I only spoke English and he had a good chuckle over it all. I should have had a laugh myself, but the experience made me feel out of sync for the rest of the day. What must that poor man have been thinking as I looked at everything but him?

This theme continued throughout our visit at dinner parties and shopping excursions. Guests or proprietors would talk to me without me being aware that I was the focus of their conversation and I would continue doing whatever it was I was doing at the time. The point I'm so inelegantly trying to make is that I look Asian and while in the company of my relatives who are multi-lingual, most people assume that I am as well.

As a child, I spoke fluent Thai. No one else in my family did, including my parents. I learned it from the maid while we lived in Bangkok. I wasn't fluent in English until I was about four and I learned it from watching Sesame Street. I've always been the one that was just outside of the norm.

I've felt out of sync this entire week. I've been doing a lot of things out and about solo and realize that while wearing a hat, I look just as average as everyone else. Except, I've forgotten how to speak the language.

I find that I'm no longer comfortable doing some of the pedestrian, mundane things that I used to do. An errand to the Apple store to have Chris's computer serviced left me frazzled. An impulse stop at another shop left me feeling isolated. A visit with a local opthamologist found me floundering for words.

These are the everyday things that I've been aspiring to do since I've been transplanted. I thought I was sick of having to buy everything off of the internet. I longed to be able to try clothes on in a shop. All of the little nuisances that add up to a normal life now are so foreign to me that I marvel at being able to do them at all. The very act of asserting my independence has left me feeling disconnected.

A visit with my local oncologist yesterday put the entire week into perspective. Dr. B. came in, reviewed my counts with me and asked me if I had anything new to tell him. I slumped in my chair, shook my head and said, "Not a thing." He smiled and told me that my counts were perfect and everything looked normal. He checked my head and neck for unusual lymph nodes, then did the spleen check and pronounced everything normal. We went through the perfunctory checks for heart and lung functions. Normal.

As I left with a copy of my counts in hand, he reiterated to me that I was the best looking transplant patient he'd ever seen. Someone else remarked that you'd never guess I'd had anything done to me.

So I suppose this entire week has been a test of my patience and my nerves. As for how I did, I'm still standing and will have to work on embracing life as a normal person. There will be hiccups and I will stutter, but I'm determined to relearn how to speak the language of the everyday.

Stuff

An acute pain on my right side woke me up around 4am on Sunday. It felt very much like the same pain that was diagnosed in August and September, so I went back to sleep and thought nothing more of it. When I finally got up that day, I took 2 aleve thinking it was the same inflammation that had led to the partially collapsed lung. By midmorning, my entire abdomen was swollen.

The acute pain was more severe and I was loathe to move around because of the discomfort. By that night, it was painful to lie down, so I slept sitting up, thinking that things would resolve in the morning. By Monday morning, it was painful to stand due to the abdominal swelling.

Chris took me to the ER where I had x-rays and a CT scan as well as blood work. My white blood cell count was 10.9 which sent me into a moderate panic. All of my other numbers were normal for me with only one liver function test coming back slightly elevated. Normally, I return with 3 on the high side, so I guess this was a plus. The ER doctor didn't think anything looked amiss and chalked the high WBC up to being a response to the acute pain I was feeling.

The x-rays and CT scan showed nothing nefarious. There was a large deposit of material in my right transverse colon which was exactly where the most acute pain could be found. It would seem that my digestive system had stopped functioning normally, again. I was given an injection of anti-inflammatory meds via my IV line just in case there was any pleurisy and sent home with instructions to get plenty of fluids and take a few over the counter meds.

The acute pain has subsided and the swelling of my abdomen has lessened The muscles are all sore from being stretched for the last few days. I plan on staying close to home for the next few days. With transplants, if it's not one strange thing, it's another.

Lingering

It's been one week since the sore throat manifested and I feel really well. There's still the issue of a lingering runny nose, but it does get noticeably better every day. In the past, before cancer, I could shake a cold in a few days, a week at the very most. This cold is literally my first since the last transplant, and I find that it's resolving in stages. First the sore throat disappeared, then the congestion, and now I'm waiting on the water works. My energy level is back to where it was and my appetite is excellent. I just need to be patient and understand that this immune system is having to find it's way in a foreign environment.

One strange thing I noticed while I was sick was a significant reduction in the occurrence of skin GvH flares. I assume my immune system was busy trying to figure out what was going on with the cold and took a break from torturing my skin. As the cold resolved, the skin GvH ramped up. Today has been particularly difficult in that regard.

On a scale of 1 to 10 in comparison to other transplant patients' GvH issues, I'd rank mine a 2, maybe a 3 on my worst day. The skin issues manifest as itching, rashes and dry patches. Today, there wasn't a single inch of me that didn't feel like it was covered in poison ivy; especially my scalp. At the moment, the itching is a low level hum on my face and feet, but that could change at any time.

As for what I've been doing with myself since last week, there are only a few things to report. Chris's dad and step-mom are in town for a few days and last night we got to have dinner with them which was really nice. We had the opportunity to visit them last year right before I relapsed and I can honestly say that they live in one of the most beautiful parts of the country.

We had our first Halloween in the house which was a lot of fun. Before cancer, we had a townhouse in a residential development that had a few kids, but there were never trick-or-treaters. Since we don't have kid ourselves, we weren't really sure of what to expect. I have friends in other parts of the country who take their kids to organized events instead of letting them go door to door like we did as children.

I emailed the home owner's association to get a rough idea of how much candy to buy. We hadn't received a reply the week of Halloween, so we just guessed based on the size of the neighborhood. The subdivision is so large, there are 2 homeowner's associations, and based on that, we bought a ridiculous amount of candy. A few days later, we ran into our next door neighbor and she told us to expect maybe half a dozen kids.

I made a point of getting candy that I loved as a child, so I wasn't heartbroken to hear that I'd probably be eating candy for the next month. Chris is trying to lose weight, so he was definitely worried.

Chris started getting really excited about the holiday and wanted to decorate the yard and windows. I know he's going to be a really fun dad because he's already making plans for something big next year. Keep in mind that he's an engineer, so there's probably going to be lumber and motors involved.

We had way more kids than we expected and had just enough candy. The first set of kids showed up at 5:30 just as we finished putting the yard decorations up. I happened to be in the kitchen, which faces the street, when I saw a tiny blur tearing across our lawn. I could make out a tiara and a frilly little tutu as she whizzed past.

There was a steady stream of kids until 8:15 and Chris and I had a blast handing out candy. The kids were mostly of the under 10 set and were all precious. I'm really looking forward to doing it again next year.

Trick-or-Treat

Close up of a bedsheet ghost

Chris creating some spooky ambiance

I poured all of the candy into a bag to mix it up. Chris is posing with it to give perspective.

As requested

For Dianne and David, here's the link to the story about the new research drug: Irish researchers discover drug that can kill leukemia cells

I stole it from my friends at AADP