Tuesday, March 31, 2009

Just for a laugh.

I think my niece is viral, yet again. She was up off and on during the night throwing up, so guess where I am right now. Back in quarantine. This is definitely the one time that I do not want to catch what she has. I've spent so much time vomiting over the last two years, I could do without any more episodes, thank you very much.

Monday, March 30, 2009

Dinner was a little bit of a disappointment yesterday. I didn't have the right flour for the naan, but forged ahead regardless. The texture was wrong and no matter what I tried, I couldn't get the oven temperature right. The chicken chaat was really tart. I followed the recipe to the letter, but made the mistake of not tasting it along the way. I forgot how tart tamarind can be and when you add lemon juice to that, you're just asking for trouble. Next time, I'd cut the lemon juice down by at least half, or maybe just substitute water. We ended up picking up naan at one of the local Indian restaurants in town. Live and learn.

I've been off steroids for a little over two weeks now, give or take. Time tends to be a little compressed for me, since I stopped paying attention to certain things. I think I'm suffering from a new manifestation of skin GvHD. I itch all over sporadically throughout the day. There is no rhyme or reason to it. It's a sensation buried deep in the skin that no scratch can satisfy. The worst is when the bottoms of my toes start to itch. It's tortuous and the only thing I can do is wait for it to stop of it's own volition. I keep applying moisturizer, which helps to some degree. I foresee some sort of steroid cream being prescribed in the near future.

My joints continue to be flexible and for that I am grateful. I definitely do not want to go back on oral steroids. At the moment, I look less like a chipmunk and more like a squirrel. I consider this an improvement and am hopeful that my face is almost normal for my next MDA visit. It's not about vanity. My doctor thinks the whole process should be happening faster than it is and mentioned prescribing some more meds to speed everything along. I'd rather not have any more pills to keep up with.

I'm going to take a break from playing international gourmet this week. I'm thinking that it's going to be mostly salads for dinner, with the occasional baked sweet potato. If Chris or Dixie want to try their hand at something, they're more than welcome to.

Sunday, March 29, 2009

Chris and I are laying low and trying to stay out of trouble. The weather has been horribly wet this week. Of course this weekend has been gloriously clear and sunny. I even volunteered to run errands with Chris, just so I could be outside. My version of outside is sitting in a shady car while Chris does groceries and picks up odds and ends. I'll take what I can get.

We're attempting our first batch of naan tonight. I'm really hopeful. We found a recipe for chicken chaat that comes from our favorite Indian restaurant in Houston. The salad is marinating in the fridge and I'm anticipating some delicious flat bread sammies.

Life is plugging along at a nice pace. Living with a teenager keeps things dynamic. Chris and I are tentatively making plans for a house. This will be attempt number three. It seems that everytime we make an offer, something happens. First it was PTLD, then a relapse. We've got our eye on a few places, but we're being cautious. There's nothing that we just love, and houses go on and off the market, so I don't feel rushed. I know when it happens, I'll be happy to have my stuff out of storage and I'm sure Dixie will be relieved to have her house back.

Hope everyone has enjoyed their weekend. I anticipate things being quiet around here for another week.

Tuesday, March 24, 2009

Octavia Butler often wrote of "Other" as a state of being. That alien sense of not belonging, but not knowing where to go. I couldn't fully appreciate her writing as a student years ago, but now I'm starting to believe that I have some inkling of what she was alluding to.

With the first transplant, I belonged to an exclusive group of medical adventurers setting out to get saved. When I relapsed, I jumped ship to be in a more inclusive, if unenviable, group of people desperate for some hope. Now that I've had transplant number two, I live in a much smaller world inhabited by some very remarkable people.

I never really felt isolated the first time around. I proudly walked around with my head naked and the lower half of my face covered by a surgical mask. Most days, it never occurred to me to cover my baldness since it was so normal for me. I gave up business casual for lounge wear and pajamas. In my new world, track suits were de rigeur. I never felt alien because I was surrounded by people just like myself.

Since my second transplant, I've become a little more apprehensive. I suspect it has something to do with the steroids altering my appearance. I no longer recognize my face in the mirror and often wonder at people's reactions upon first seeing me. Last week, I put on make-up for the first time in 8 months. I hated the way I looked. It was so foreign and fussy. I had just strayed out of my comfort zone.

I have let cancer dance me into a corner that I felt "safe" in. No more. Now that I'm off of the dreaded steroids, my face is very slowly deflating. I can almost make out cheek bones. I'm starting to feel more like myself and less like biting someone's head off. Thanks to the experiences of the last two years, I'll always feel a little "alien", and that's really quite alright.

Wednesday, March 18, 2009

Tonight we learned that our friend Michelle has relapsed. She had a cord blood transplant a little over 100 days ago. It was her only option since there were no matched unrelated donors that were a close enough match to her on the registry. Please send healing thoughts or prayers or both her way.


My niece has a sinus infection and her doctor has confirmed that she'll be contagious through Friday. I've lost count of the infections this kid has had in the last two months. She is replete with germs, viruses, and bacteria. She is saturated in most of the things that I've been warned to avoid. Dear God, she is less than ten feet from me.

What do transplant patients with young children do? The only thing worse than a teenager is a toddler in daycare. The last two months have been difficult from a hygiene point of view. It's next to impossible to get C to be assiduous in her cleaning. Her version of clean and mine are different to begin with, but add in the fact that my immune system is suppressed due to drugs and we're in a completely different arena.

Dixie has asked her to spray everything she touches with Lysol while she's infectious. She sprays for about a second. I explained to Dixie that she needs to spray for a bit longer. It prompted a ten second spray. Quite often I feel like I'm speaking an entirely different language. More often than not, I feel like the cats have a better grasp of what I'm saying.

I'm pretty sure that I'm at the end of my tether on the germ front. I'm seriously considering wrapping the house in cling film, or installing a "hot zone" shower at the front door. At the very least, I'm staying in my room and only going out when absolutely nescessary. If anyone needs me, I'll be the basket case hiding under the covers.

Monday, March 16, 2009

The training wheels came off last Friday and I'm starting to feel the effects. As the steroids leave my system, I find myself feeling a little more tired and a little less inclined toward doing twenty projects in one day. It has been a very slow progression and today was the first time that I felt like I needed a nap. Of course when I tried to take one, I didn't manage to sleep. The dryer alarm kept going off and I don't know how to fix it. Seriously, it buzzes fifteen minutes before your clothes are dry, then five minutes before, then at the end of the cool down cycle. Why is this? Will a bomb explode in an undisclosed location if the dryer doesn't do this?

I did feel refreshed after having a little lie down, but I'm starting to miss the artificial stimulus that steroids impart. I've managed to do one load of laundry today, and I'm considering making soup. I know that my current state is only temporary and that things will even out. It's just that I'm one of those people who likes immediate gratification.

On to other things...

Since Chris's return, we've discovered that the side of the truck involved in the wreck now leaks. The upholstery on the passenger side seat has water stains all over it. It hasn't helped that it's been raining here for the last four days. We're waiting for the dealership to call us to bring the truck in. The entire passenger side door and some panels have to be replaced, so the body shop had to order them. All told, the cost to repair the truck structurally added to the cost to fix it cosmetically equals a big chunk of change. Chris is already making noise about another car. More specifically, the antithesis of the truck. He keeps joking about trading it in. I told him that if he wants another car, then I plan on driving the truck until it falls apart from despair. He can sell my car and use the money for a down payment. Of course, this is all just talk, since there's no way we could float a car note just now.

Life is creeping toward normal. My face is a little less puffy. My midsection is still as puffy as it was a month ago leading me to believe that it really is fat and not water weight. Wii fit confirms this every time I do the body test. The stinking balance board is also a scale. My hair is growing back curlier than the first time. I still can't tell what color it's going to settle on, though. It's a healthy mix of salt and pepper. Today is Chris's first day at his new job and the cats have achieved an uneasy truce with one another. Life is still good.

Thursday, March 12, 2009

There and Back Again

On reflection, it has been quite a while since I posted anything here, too long in fact. As Ann has been filling you in on what has been going on, you know about my adventure in Jersey, and our aborted move.

I'm sure the question on everybody's mind is "what happened"? The answer is easy, to be charitable there was a misunderstanding of what the company was looking for and what I was. The day I had my accident it became very clear that they wanted someone to "push paper" and didn’t seem very interested in my input.

I had some serious thinking to do and called Ann about it. After explaining the situation to her, she agreed with me that the situation didn’t sound stable. She didn’t think it was fair that I had to work a job that I was unhappy with, but we both knew that the reality was that we needed the money. We resolved that we would postpone the move and I would keep working the job and commuting to and from the North East. At least until something better turned up.

So I left to go home and take Ann to her appointment in Houston. As it turns out fate intervened, and I got a call from an old client who had heard I was looking for a job. I arranged a quick interview and the next day he made me an offer that was in my judgment too serious to pass up. I accepted without much, if any hesitation.

That only left two things. I had to fly back to New Jersey and resign and pick up the car which was getting fixed in a GM dealership in Jersey City. I did both Monday morning and spent the next 24 hours driving back.

Apart from the work situation and the car accident, I didn’t have a bad time in the north. I got to finally meet my friend Wiley's wife Mara, who is a wonderful and charming person. I also got to meet the amazingly intelligent and generous wife of my friend Georg, Leal and their brillantly funny daughter Klara. I was also lucky enough to have a delicious dinner in Korea town with one of our best friends, the delightful and beautiful Laren who helped me nurse Ann through the first transplant. I didn’t get a chance to see Tina because of her schedule, but if I could have I would have walked all the way from Penn Station to her place just to meet her for a beer.

Right now, however I'm just glad to be home with Ann 'casue I love her.

Wednesday, March 11, 2009

Chris is back safe and sound. He's promised to blog soon.

Monday, March 9, 2009

Chris resigned from the job in NJ this morning and started the long drive home. He should be back sometime tomorrow night, which means I should probably tidy up my mess a bit. He is the Felix to my Oscar and yet somehow it all works.

I'm excited to have him back and hope that the new job is a better fit. I'll take my last dose of steroids on Wednesday and if the GvHD behaves I should be good to go. My doctor has warned me that if the GvH is going to flare up, it will happen in the next few weeks. I'm keeping an eye on it and hoping fervently that the new immune system maintains the status quo. Since I've tapered off to 8mg of methylprednisolone, I've noticed that my energy levels have dropped concurrently. I no longer feel like I'm vibrating so hard that take off is imminent and I'm sleeping more. Rather, I'm not waking up in the middle of the night for no apparent reason. My fingers continue to be a little stiff, but that's nothing new. So long as the other joint issues remain at bay, I'll be a happy girl.

Saturday, March 7, 2009

I just put Chris on a plane headed back to New Jersey. I know that I'll see him soon, but I'll miss him none the less. Things have started to wind down after a very hectic week. Chris was in a wreck in New Jersey on Monday, so the car has been at a dealership getting work done on the engine and frame while Chris has been in Baton Rouge. He plans on driving it back to Baton Rouge in the near future and taking care of the body work once he gets here. As I understand it, it was a pretty bad wreck and I'm just grateful that Chris stayed in one piece and no one was severely injured.

I continue to do well, although I've managed to put on 8 pounds since Chris left. I've been carb loading without my diet buddy to keep me straight. Dixie's agreed to be a stand in, so I'll get back on the wagon today. It doesn't hurt that I finished off all of the butterscotch cookies yesterday. I'll be off of the steroids next Friday, and I'm hoping that I'll feel less compelled to eat off schedule, i.e. the junk food in the pantry will stop calling out to me.

I'm off to finish taking my meds and finish knitting a shrug that's been lingering since the first transplant.

Friday, March 6, 2009

Long time no see

I have to apologize for the lack of posts these last two weeks. I know how anxious I can get when my buddies in the blogosphere don't update for a few days, and so I am sincerely sorry if I made anyone worry.

I've been busy these last few weeks scheduling one person or another to help with the move to New Jersey. There were quotes to get, appointments to make, apartments to find, etc. The last few days I've been manically canceling appointments in addition to having to go to Houston for my monthly checkup. Without being able to get into too much detail, I'm not moving up to New Jersey anytime soon. It has absolutely nothing to do with my health, rather it has more to do with logistics and a small handful of other things. When we're able to talk about it, I promise to be more forthcoming.

In other news, I saw Dr. Kebriaei on Wednesday and for the most part, all is well. My white blood cell count is normal, my hemoglobin and red blood cell count are still low, but that's to be expected. My liver function is essentially normal, so I won't have to take an extra drug to rid my liver of extra iron. Hooray! Dr. Kebriaei's only obvious concern was that my face and digits are still puffy from steroids. She feels that I'm on such a low dose that I should essentially look normal by now. The swelling in my face isn't nearly as bad as it was, but my face is far from normal looking. Dr. Kebriaei mentioned Raynaud's disease which is a circulatory problem. She wants to keep an eye on it and reassess it next month.

I'm also manifesting some new GvHD of the skin. The backs and palms of my hands get bright red off and on throughout the day and the skin is very dry regardless of how often I moisturize. There's also a large patch of skin that spans my lower back that's dimpled. This is a manifestation of GvH of the tissue just below the skin. It's very minor right now, but we have to watch it since I'll be coming off of the steroids next week.

I don't really have anything else to report. No more wacky incidences of unwashed hands or contraband fruit. I'll be getting off of three more medications next Friday, but will have to resume another at the same time. Overall, I feel really well and have been enjoying Chris's visit home. I'm sad that he has to fly back to New Jersey tomorrow, but I'll see him soon.