Wednesday, December 30, 2009

Chemo brain is a topic that has been trending a lot lately thanks to some new research and a clearer understanding of patients' needs post transplant. When I last saw my post-transplant nurse, Karen, for a biannual followup, she took me through the paces and mentioned a new program being developed in conjunction with the neuropsychology brain trust at MDA. I filed the information away, thinking that I probably wouldn't need to take advantage of it since I was coping with my chemo brain just fine.

Yesterday, I had to admit to myself that things weren't altogether copacetic. It took me over three hours to make dinner. You may wonder what the one thing has to do with the other and what amazing concoction I was attempting. Quiche and sweet potato soup. Eggs and soup. Three hours of activity, none of which was passive.

Chemo brain is something that I've been struggling with for months now. People may smile and joke and say things like, "Blame it on the chemo brain," or "I must have chemo brain by proxy." I can't even smile about it anymore.

It took me three hours to break eggs, peel vegetables, and get things into the oven. When I discussed the situation with Chris, he did his best to reassure me that I'm still the same person I've always been and that I shouldn't be so hard on myself. This is one of the million reasons I love my guy. He was worried that I was beating myself up for not being able to do things that were once second nature.

Trust me, I know I'm still the same Ann. All of my inherent Ann-ness is intact. My personality hasn't really shifted. It's my ability to think that has me confounded.

We've had the chemo brain discussion more than once and I ultimately had to use the one phrase that makes me insane with irritation to end the confusion: You can't understand. I hate this phrase. For me, hearing this leads me to think that a person is copping out of a debate or that I'm failing to adequately explain something.

Imagine walking around in a gelatinous fog 24/7. Now multiply that by 100. I feel like my head is filled with cotton batting. I can't process long tracts of text in a single sitting. It takes me ages to read a single magazine article and I don't always understand what I've read. When I'm trying to hold a conversation, it's not unusual for me to just stop talking mid-sentence without having finished the thought. I substitute words that mean one thing, but sound similar to another. I don't mean homophones, either. Yesterday, I said Scot, when I meant to say stop. I heard stop in my head. I'd intended to say stop. I said Scot instead. Things like that happen with great frequency on a daily basis.

Chris and close friends that I speak to regularly anticipate it happening. They let it pass without comment, which I greatly appreciate. I usually keep my cool and correct myself, or at least slow down long enough to make fewer mistakes.

I can plan things out and make lists to help me keep on track. For instance, I planned dinner yesterday. I had all of my bowls lined up, the spices were all measured, and all of the vegetables I would need were on the counter within easy reach and the utensils were at their stations. It does take me a little longer than most people to get things done because I don't move as quickly as I once did. Every action requires thought. That's not why it took me 3 hours to make a quiche and a pot of soup. It should have taken me an hour, tops.

It took 3 hours because I was trying to multi-task. Rather than cook a quiche, then make soup, I was trying to do both at once so they'd be ready at the same time. It doesn't sound complicated and I'm sure there are some of you who are wondering why I'm droning on at length about it. It's because it's not complicated and therein lies my frustration.

This was the final straw in a long line of similar events. I can no longer do things in a linear progression. What makes perfect sense one minute becomes a complete quagmire the next. I'm not alone in this. I've spoken to other patients who've related similar anecdotes. Mention chemo brain and we all sport similar looks of resigned understanding.

This makes me very worried regarding taking classes at LSU inorder to finish the CM degree. I refuse to let it deter me, but I don't know how to make it stop frustrating me. I accept the fact that I need to learn a new way to learn and that things will no longer come easily to me. I just don't like it.

Tomorrow, I'll contact Karen about setting me up with the neuropsychologists. I may be able to get in to see them during my next checkup in three months. Until then, I'll keep cruising along.

Thursday, December 24, 2009

Houston in my rearview mirror

When I was diagnosed with leukemia by the man who would later become my local oncologist, I asked him how long he thought treatment would last. He estimated that I could be done in about four months. I understood then that he wasn't giving me a hard and fast guarantee, and I understand now that he was giving me a best case scenario. As Chris likes to say, hearing that I had leukemia was like someone throwing a flash grenade into the room. I became fundamentally functional when I heard that pronouncement and the survivalist lurking in the primal part of my brain took over.

Thinking that I would only be away from my home for a few months and still reeling from the cancer diagnosis, Chris and I stepped out of our everyday lives leaving things where they laid. I left dirty clothes in the hamper and laundry to be folded spread out on the couch in our bedroom. There were dishes in the dishwasher and the house could have used a thorough once over. I knew I'd be back, so those things were going to wait for a later time.

I never set foot in our little townhouse again. Strangers hired by a family member packed up our things and placed them in storage. We'd been in the midst of a kitchen renovation and I'd been slacking on finishing the final details, so the doors from the upper cabinets were missing . They were stacked in various places, waiting for me to finish painting them. The house was sold with a thousand tiny projects left to be finished when we realized that we'd need the money it could bring to help finance treatment.

I'm only bringing this up now because I'm about to confess something that I've begun doing recently. Since we moved into our current house in June, I've begun a little ritual before each trip to Houston. A few days before we're scheduled to travel, I begin tying up loose ends. Every single item of laundry is washed, pressed and put neatly away. The house is cleaned from top to bottom with a critical eye turned to every little detail that may be scrutinized by a potential buyer.

I've done this quietly and stealthily so as not to alert Chris to the fact that I worry about a relapse. I finally confessed to this mania yesterday while we were driving to Houston. It was a relief to expose that irrational part of my brain to the light of reason.

My need to put things in order was worse this week than the week prior to my last trip to Houston, three months ago. It was around this time in 2006 when I realized that there was something seriously wrong with my health. Relapse was at the forefront of my mind this time around because I was having my fifteen month checkup just as the most physically obvious symptoms of leukemia began manifesting three years ago.

I had no rational reason to believe that the sneaky little monster was back just in time for a non-celebratory anniversary. I felt, and still do feel well. There are very obvious signs of graft versus host disease riddling my face and body. The very fact that I was able to clean a three bedroom house from top to bottom in a single week should have been my first clue that all was well. Three years ago, I couldn't fold a shirt without almost blacking out. That little moment actually happened. I still can't do things as quickly as you, but I'm approaching something that I can live with.

Chris and I rolled into Houston armed with goodie bags filled with homemade fudge for my friends at MD Anderson. Thanks to my inattention while driving we arrived fifteen minutes late for my first appointment. After the fastest blood draw I've ever experienced, we made the rounds to deliver treats and visit with people I haven't seen since being released from the 100 day bubble. I got the best reception at the infusion clinic where I spent the bulk of my time post transplant getting blood and IV drugs.

Juanita, the first nurse to spot me, actually walked into the center of the bull pen and announced my name in a loud and lilting voice. I found myself surrounded by a small army of nurses who had looked after me on those long clinic days. There were many hugs and lots of catching up while Chris handed out bags of candy to our friends.

We also visited the transplant floor of the hospital, looking for familiar faces and physical therapy where we surprised Marigold, my patient therapist. She didn't recognize me until she saw Chris. The fact that I had hair had thrown her for a loop.

I finally saw my transplant doctor sometime after twelve. She had some concerns over the skin GvHD on my face and I think she may have been on the cusp of increasing my tacrolimus dosage. The rashes have been an ongoing nuisance for months, but this is the first time that she's actually been able to observe one. She was worried that the last reduction in tacro had spurred a greater frequency of GvH occurrences. I was able to reassure her that I'd been having the problem for months before that and that I was still able to keep things under control with moisturizer and cortisone cream.

I think we struck something of a compromise after she extracted a promise from me to report any skin thickening or magnified symptoms. If this occurs, then it's back to a double dosage. All of my medications will remain the same with the exception of magnesium. I get to cut the dose in half so long as I'm only taking 0.5 mg of tacrolimus.

We briefly discussed my continuing loss of bone density which is compounded by the fact that I'm post menopausal thanks to chemotherapy. I'll have another bone density scan in three months when I return for my eighteen month checkup. I'll also have to see an endocrinologist at which point we'll discuss taking drugs to help slow the bone loss.

For those that are interested, my white blood cell count was 8.1 K/Ul, red blood cells were 3.64 M/UL, platelets were 314 K/UL, ANC was 5.48 K/UL, and ALC was 1.17 K/UL. Dr. K. pointed out that I have an elevated eosinophil count of 0.44 K/UL which correlates nicely with the fact that I'm exhibiting signs of chronic graft versus host disease. She even went so far as to circle the eosinophil percentage, 5.4%, which according to her is the ideal number to be looking for when discussing chronic GvHD. It's just enough to provide a protective barrier against a relapse, but not so grave as to be life threatening.

At the eighteen month visit, I'll get my immune system reassessed with particular attention paid to what my T-cells are doing. Dr. K. thinks they'll still be in the low range which would be normal. If the new immune system tests well enough, then I'll have a few more restrictions lifted.

We discussed the likelihood of me returning to school to finish the construction management degree. She advised me that I need to take it very slowly since I'll be dealing with learning problems thanks to chemo brain. I've been given the green light to take one or two classes to assess my ability to cope with concentration and problem solving. I've also been warned that my ability to deal with real life stresses will have changed and that I need to be prepared. It's been duly noted. She's also given the go ahead to another idea that Chris and I have been kicking around. In preparation for possibly being able to return to the workforce, we discussed volunteering a few hours each week. It will allow me to see how I handle a work environment and if I'll be able to maintain the stamina needed to get through a day. I'm sure it sounds like minor stuff, but you need to remember that it takes me almost eight hours to vacuum four rooms and I'm usually wiped out for the rest of the day as a result.

At the end of the visit, I was able to ask Dr. K. the most important question of the day. Chocolate or peanut butter? The answer was, "Chocolate, of course." Chocolate fudge ruled the day.

I'll register for an independent learning class at LSU in the coming weeks and research some local volunteering options. I'm open to suggestions on this if anyone would like to contribute some input.

Believe it or not, after returning home from Houston, we had a late night dinner date with out of town friends. It was a twenty-two hour marathon day without naps. By the time my head hit the pillow sometime after midnight, nothing short of a natural disaster was going to get me out from under the covers.

In no particular order:

At the Chimes LSU, from left to right: Chris, me, Anand, Kurt, and Daniel Martin.

A close up of my cheek. The clusters of red are composed of tiny raised welts that itch to perdition and cover my face and neck. They'll eventually become little blisters that dry out and become scaly and flaky.

We accidentally stumbled upon this great Vietnamese restaurant on our way out of Houston. Had I known about this place while we were living there, I may have become a permanent fixture. Vietopia is located in Rice Village and serves delicious Vietnamese cuisine that rivals the dishes that I grew up with. The service is spot on and drinks, appetizers, and entrees for two came to $23 before tip. The entree portions were enormous and could easily have made two meals.

Close up of my Bo Phon Xao. It's a dish consisting of rice vermicelli, slivers of fragrant lemongrass beef, mung bean sprouts, shaved carrot, green onions, daikon, onion, and chiffonade of lettuce. Heaven in a bowl. It didn't occur to me to take a picture until after I'd mixed everything up and had a few heaping bites.

A view of the restaurant from our table. It was just after the lunch rush. Service is fast and pleasant. The young woman handling our table was gracious and attentive.

Happy and sated after an excellent appointment and a delicious lunch.

Friday, December 18, 2009

Bed head

Yesterday, I had the pleasure of getting my hair cut and running into a friend that I hadn't seen in over a year. My friend and stylist, Lydia was able to work her magic to help hide the fact that my hair is so thin thanks to all of the treatment. She is an absolute treat to be around and makes the world a better place just by being herself. Those that know her, know exactly what I'm talking about.

Laura, Lydia's daughter, was also at the salon and surprised me with a hug and a smile as I walked through the door. I haven't seen her in over a year and I love her to pieces. We used to work together before I was diagnosed and there wasn't a day that went by that she didn't have me laughing at one thing or another. Both Lydia and Laura have a rare gift for making everyone comfortable while being the life of the party.

I promised friends that I would post pictures of the new do, so here they are:

I should have taken the picture yesterday, after Lydia had styled it. She had it in a very edgy, tousled do that I loved. Sadly, I wasn't able to emulate her ability. I'll work on it. I love it, nonetheless.

These are for my friend, Lisa who tweeted something about bedhead. This is literally seconds after I woke up this morning. Normally, my morning hair defies physics and those who have had the pleasure of seeing it will assure you that I'm not exaggerating. For some perverse reason, the bedhead wasn't bad this morning. Lisa, I hope this makes you smile.

Wednesday, December 16, 2009

Another week

It feels like the last seven days have been full of too many appointments and far too little recreation. The appointments have been of the home maintenance, non-medical kind which is a novelty for me. The dishwasher has a mysterious leak that only happens occasionally and doesn't seem to be due to a faulty gasket. It's already been serviced once this week and yet it continues to misbehave. For the record, it didn't leak while the repair guy was here and he couldn't get it to leak. It leaked for me yesterday and today, so I have another appointment on Friday.

The dining room chair epic saga was finally resolved today with the delivery of four new chairs that all stand level. This leaves one chair to be picked up at the store when I can finally schedule it. Kudos to Flo at AFD for taking care of the problem.

The skin GvHD is ramped up higher than I've ever had it. My face and chest are covered in a very discernable rash that constantly itches. I've been applying cortisone cream, but that doesn't seem to be slowing things down. I'm hopeful that it's only part of a cycle and will resolve on it's own. I'll see my transplant doctor next week and discuss treatment options.

We finally managed to get the Christmas tree up last Monday and had it decorated by Tuesday night. The cats have been having a ball using it as cover while they plan their little ambushes.

I managed to finish knitting my super secret project and will post pictures of it once it arrives at it's final destination. I've been working on it since August and now that it's finished, I'm feeling a little lost in the hobby department. Never fear, I've cooked up a new scheme and am working on designing something to keep me busy.

I know this is a mess of a post, but I didn't want to let a week go by without a word. We're all doing well and I feel great.

Can you spot the reason the tree didn't get decorated on the same night it was erected?

It's our very own house tiger, Akiko.

Akiko spots her quarry below.

Poor Etsuko had no idea Akiko was about to fly out of the tree to pounce on her.

The super secret knitting project.

Monday, December 7, 2009

A week in review

I'm taking a break from the things I should be doing--emptying boxes, dusting, cleaning, laundry, to do something that I want to do--blogging. I feel that I've been horribly remiss in all things bloggy and hope to rectify that today with a recap of last week.

The temperature in southern Louisiana finally dropped closer to something approximating winter and there were even rumors of snow. You'll have to forgive me, but the white stuff stirs up a lot of excitement down here since it very rarely happens and never lasts long enough. I know people in other parts of the country consider snow a nuisance and I'm sure those of us in the muggy south can relate with our disdain of heavy rain.

Over the summer months, I suffered with increased episodes of skin GvHD. The sun and heat set off my attacks and once one gets going, it's difficult to rein it in. I looked forward to cooler weather and what I thought would be a reprieve from rashes, and random stinging attacks delivered by invisible wasps inhabiting the underside of my skin. The temperature dropped. The attacks keep coming. It would appear that extreme cold also triggers my GvHD attacks.

My face is covered in big flaky patches that no amount of moisturizer can help. The backs of my hands are raw and covered in tiny welts that will break open if I don't apply moisturizer. My scalp is shedding, leading to what looks like unsightly dandruff.

There's another manifestation happening with increased frequency that I heretofore had not mentioned. If any of my extremities get cold, and I mean really cold, then the muscles seize and contract, contorting the affected limb into an uncomfortable angle. It started with my feet and has been happening for close to a year. It only happened occasionally, so I never really thought about it.

One foot will become cold for whatever external reason, then I'll start to feel the sensation that precedes a charlie horse. If I don't start moving and forcing the foot to stretch quickly enough, my ankle rotates inward and locks. It's a strange and uncomfortable sensation that lasts as long as it takes me to get circulation back into the offending foot.

That phenomenon is now affecting a slightly larger area. It starts with a foot and now migrates up my leg and into my hip. The ankle rotates and locks, as does my hip. It's only happened a few times over the last month and isn't painful, only uncomfortable. I'm making a point of stretching my legs throughout the day and paying closer attention to the signals my body sends out.

All of these things are more of a nuisance than anything else, so I'm not worried. I'll mention everything to my transplant doctor when I see her later this month.

I can't really account for where all of my time has been spent over the last week. I've been very slowly unpacking three boxes of place settings that I ordered a week and a half ago. They're to replace the dishes that didn't quite make it from the company that handled our move. Somewhere in a warehouse here in town sits a small number of boxes with the rest of my old dishes. A normal person would have contacted the storage company when only three partial place settings were unearthed from the "kitchen" portion of the move. For those of you who are new to this story, my first house was packed and moved by someone other than me since I was in Houston receiving treatment. Someone else found the company and oversaw the affair.

It seemed like everytime we had to contact the moving company post move to let them know that we hadn't gotten all of our stuff, we were being charged another $500 for the pleasure of having our things returned to us. Chris and I hit a saturation point and realized that we'd done without our things for three years. If we weren't aware of missing something, then we could live without it.

We boxed up some of the mismatched plates, etc and dropped them off at Goodwill. I'll box up the rest of the orphaned dishes today or tomorrow and we'll make another donation run this weekend.

Chris is well, the cats are well, and I am well which makes for a very boring week to write about. We like boring.

It did snow the other day. Big fat flurries that dissapeared as soon as they hit the wet pavement. The pictures below were taken in our backyard.