Sunday, December 18, 2011

MDA Recap

I've been trying to write this post since last Thursday, but life and a mild case of writer's block have been conspiring against me. My most recent visit to MD Anderson involved a routine checkup with my transplant doctor and a bone marrow aspiration to be sure that there's no evidence of residual disease. 6 months has elapsed since my marrow has been checked for any lurking leukemia cells and so I was due.

The procedure went off without a hitch, my blood work was normal, and my transplant doctor was happy to send me on my way. As a special treat, I was able to meet with 2 of my twitter friends for lunch. Jody and Jennifer deserve a commendation for infinite patience. My clinic was running 2 hours behind and they had to wait on me for lunch. After a comedy of errors in which I kept pushing the schedule back via text messages, and poor Jody lost her keys, and sweet Jennifer was stuck at the restaurant holding the table during lunch time rush hour all by herself.

I'm afraid I'll have to recap the adventure in another post since my brain is shutting down and this seems to be as good as it's going to get. Before I completely forget, I managed a 3.0 for the semester. I don't know how it happened, but I'm happy to have it.

Here are the numbers for my blood work:

RBC: 4.01 M/UL  (4.0-5.50)

WBC: 7.5 K/UL  (4.0-11.0)

Hemoglobin: 12.3 G/DL  (12.0-16.0)

Platelets: 387 K/UL  (140-440)

Absolute neutrophil count: 4.94 K/UL  (1.70-7.30)

My liver enzymes are absolutely middle of the road normal

Sunday, December 11, 2011

Shuffling along

I took my last final of the semester this past Thursday and have spent the last 3 days blissfully doing nothing more intellectual than reading some pulp fiction for a book club I've recently joined. The club was started by a friend from high school and its members all live in different states. We communicate via the internet and I must admit that I've been enjoying their pithiness immensely.

Aside from continued pain from the car accident, my health is good.  I have a checkup in Houston on Wednesday which will include another bone marrow biopsy.  It's routine, so no worries.  Monday, I'm going to see my internist about the issues that I continue to have as a result of the car accident.

After a week of radio silence from the claims adjustor, I started leaving messages for him.  After 2 weeks of staring at my smashed SUV taking up space in the driveway, I vented about the insurance company in question on twitter. Their twitter representative responded with a phone number and a request that I call. I'm glad I did. She worked some magic and my claims adjustor called me the next day. My car went in for repairs 24 hours later. I'm still waiting for reimbursement from them for the cost of having my car towed from the site of the accident back to my house. It's been almost a month and still nothing.

I'll post the results of the MDA visit Thursday or Friday.

Tuesday, November 22, 2011

DNA wins

After a weekend of dealing with constant discomfort and pain, I decided to give my new internal medicine doctor a call.  There is a grinding sensation in my spine and neck.  I've had a low level headache since Thursday, the day after the wreck.  I've been taking things easy and popping muscle relaxers as directed.  Things are not improving.

I was able to get in to see Dr. C.'s nurse practitioner after classes Monday.  It just so happens that they've been trying to reach me since Friday.  The woman working the front desk didn't update my personal info the last time I was there and so they've been calling my old number.  

My cholesterol levels are ridiculously high.  I eat well and am moderately active.  I have a relatively healthy lifestyle all things considered, and yet my cholesterol level weighed in at 263 mg/dL.  The normal range is between 140-200 mg/dL.  My near-vegetarian mother has struggled with her cholesterol since I was a child.  I come by the problem honestly, and so I can't really complain.  Dr. C. has started me on a prescription in the hope that my wayward lipid level can be brought back into line.  Just as an aside, my good cholesterol measured at 58 mg/dL, which is higher than average and a saving grace.  

As for my spine and neck, Dr. C. prescribed an anti-inflammatory drug in addition to the muscle relaxer.  If things haven't improved after two weeks, I have to go back to be reassessed.  The headache is a constant bother and makes concentrating in class a terrible chore.  I'm hopeful that it resolves soon.


Sunday, November 20, 2011

Applied physics

On Wednesday, November 16, I was in a 2 car wreck.  The other driver was making a left turn into oncoming traffic without the right of way.  My SUV smashed into his front passenger side door.  He was at fault and admitted as much.

My car is inoperable.  I am in near constant pain.  I've seen a doctor who prescribed muscle relaxers.  I prefer to avoid painkillers since they're either toxic to my liver or cause me to vomit, which makes everything worse.  I can't get into more detail since the case is far from being resolved.

I'll write more about the accident when I'm free to do so.

In the meantime, I hope you all have a very wonderful Thanksgiving.  May there be too much of everything that is pleasurable.

Thursday, November 3, 2011

A little GvHD to go with my chemo brain

It's been five and a half weeks since I last saw my transplant doctor and the rest of the team of specialists who work so hard to ensure I maintain a reasonable quality of life.  I've been off of bactrim, valtrex, and v-fend since that last visit and I can feel the difference.  These three drugs were taken as a precautionary measure against pneumonia, viruses, and fungal infections.  I've managed to avoid catching anything so far, and when you consider the fact that I spend a large part of my day sitting amongst a menagerie of college students, most of whom are just barely out of their teens, that is quite a feat in itself.

The real reason for brining this up is related to another drug that I still take.  Tacrolimus is an immunosuppressant drug that keeps my transplanted immune system in line.  The anti-fungal I was taking also helped boost my ability to metabolize the tacrolimus, which meant that 1mg was enough to keep my immune system under control, and thus GvHD was a very minor nuisance.  I still only take 1mg of tacrolimus and my immune system has started acting like a petulant baby left with a sitter.

The GvHD affecting my skin, mouth, scalp, and eyes has flared up ever so slightly.  My skin feels like sandpaper and no amount of moisturizer really helps.  I get small rashes, mostly on the lower part of my face.  They're easily controlled with cortisone cream and are more annoying than threatening.  I've had one mouth sore to date and that went away after a few applications of a steroid mouth rinse.  My eyes are a little drier than usual, but honestly, they've been dry since transplant number one.  I continue to use restasis drops and that keeps the problem under control.

As for my scalp, well, it's just gross.  I constantly look like I'm smuggling artificial snow in my dark locks.  My scalp itches sporadically and ferociously.  I use a dandruff shampoo that smells like burning tar as well as a prescription topical steroid solution that I'm only supposed to apply every two to three days.  I think the new normal for me includes an abundance of flakes of dead skin peppering my dark hair.  It definitely beats having cancer, but really?

I've also been taking the new hormone replacement therapy for five and a half weeks.  I do not love it.  I was taking Prempro, which left me feeling even keeled and emotionally stable, before the whole fertility mystery.  Now I'm taking Seasonale and I constantly feel like I have PMS.  Poor Chris has been a trooper while I've subjected him to hormonal whiplash.  I'm starting to get a handle on it, so I'll stick it out for another month or two in the hope that the compulsive bitchiness disappears.  If it doesn't resolve, I'll ask to be put on something else.

There's a month left to my current semester of school and to put things bluntly, my scholastic performance to date has not been stellar.  I'm stumbling badly in an estimating class and the very best I can hope for is a C.  Truth be told, I will probably repeat the class next semester.  As for the other two classes I'm taking, I have Bs in both.  I'm a bit of a freak about my grades, so you'll have to excuse my neurosis if a C sounds like a good deal to you.  I spend more time than most working on the material and trying to understand the subjects.  Chemo brain makes life difficult and so I have to work ten times as hard to do half as well as most people.  I no longer do tests well and time constraints only make things worse.  In real world applications, I can bore you to tears with what I've learned.  Give me a list of questions and an hour to answer them all and I am suddenly struck dumb.

I'll get through it.  My professors are great and have been very understanding.  One professor who knew me from classes taken before the transplant has been especially fantastic about everything.  He makes an extra effort to be sure that I understand how to work things out during class.  I've spent quite a few mornings in this professor's office getting extra help on the subject. Chris has been helping me nearly every day with the subject outside of class.  You'd think I'd have an A given the amount of effort I've been putting in on top of the extra help I've been getting.  It's the class in which I am doing the worst.

Thursday, October 27, 2011

37

36 has come and gone and with 37's arrival Wednesday I realized that things are getting easier.  I don't mean that I've unlocked the secret to mastering new things, but that the simple act of being now fits better than it ever did in years past.

I'm also learning that the middle-aged body is a mercilessly unforgiving thing.  I gave myself a free pass from the diet yesterday and ate those things that I normally eschew.  I managed to get as far as a lunch of nothing but those tiny powdered donuts that come in the glossy white bag.  I had 6 of them and started to feel sick like I'd had too much of a good thing.  After dinner, I had a piece of cake purchased from my local super market.  You know the variety, the sheet cake covered in the kind of icing that never seems to go bad because it's made of entirely synthetic food-stuffs.  Truth be known, it's one of my most favorite things.  I rarely have it because I have no self control.  After finishing a single slice, I asked Chris if he wouldn't mind bringing the rest of the cake to work just to get it out of the house.

Today, I just want to eat oatmeal and salad.

Tuesday, October 11, 2011

Biopsy results

The biopsy results from my last visit to the dermatologist at MD Anderson have come in and it was nothing to be concerned about.  Just a little cyst.  Nothing predatory or cancer-like.

I am swamped with midterms, so things will be quiet on the blog until after 10/20.

Sunday, October 2, 2011

Sharing the mystery

I was in Houston for 2 days last week and have been loathe to write about it.  Before you become alarmed, it's not for the reasons that might have immediately occurred to you.  In fact, my transplant doctor pronounced me perfectly normal.  My blood work was as close to normal as can be expected for a two time transplant survivor.  My liver is behaving.

Dr. K. took me off of the anti-fungal, anti-viral, and the antibiotic I took 3 times a week to help guard me against possibly developing pneumonia.  These 3 medications were a sort of insurance policy while I took an immunosuppressant.  I still take tacrolimus (immunosuppressant).  Dr. K. wants to wean me off of everything.

The anti-viral medication that I was on magnified my body's ability to absorb tacrolimus.  This means that now that I'm off of it, the same 1 mg dose of tacrolimus that I still take isn't as effective.  After a week of lower levels, I'm starting to feel the effects of an immune system coming off the leash.  My skin constantly feels like ants are trying to escape from the inside.  There's a constant stinging itch that moves around.  Patches of skin have become extremely dry and flaky.  My face looks as though I've allowed a thin layer of white glue to dry upon it.  My cheeks and forehead are crinkly and puckered.  The skin just under my eyes is peeling.  Nothing helps.  It itches and burns.

My latest pulmonary function test showed that I've had an improvement of 1% over the results from 6 months ago.  GvHD of the lungs is very slow to heal.  It's likely that I will be recovering from it for years to come.  I'm at a little over 70% of lung capacity.  Heat and high humidity make breathing difficult.  Smoke and air pollutants leave me a little breathless.  To give you a better reference point, I occasionally pass within a hundred yards of a small food service outpost on my way to class.  On the days that they serve barbecue and smoked sausage I start to wheeze.  That small bit of smoke in the air gives me hell.  Try to imagine walking behind a smoker.

I saw my dermatologist while I was at MDA because I was worried about a small plaque of skin that had popped up on my left forearm.  It wasn't like any GvHD that I'd ever experienced.  It was a small, flat raised dot of skin.  Extended use of immunosuppressants increases the incidence of skin cancer.  It's one of the things my team constantly checks me for.  I was concerned.  As it happens, I was worried for no good reason.

It was a wart.  I haven't had a wart since I was a child.  Dr. H. froze it off and that was the end of it.  She also took a skin punch biopsy from my right buttock.  I've been walking around with a stitch on my ass.  I don't expect the results to amount to much of anything.  Dr. H. didn't think I had anything to worry about.  I should get the results in another week.

And now I'll talk about the thing that's made me loathe to do much of anything for the last week.  I don't know if many of you will remember the great mystery diagnosis I was l being so secretive about earlier in the year.

The THING.

I've been seeing a reproductive endocrinologist as MDA for the last 2 years.  He put me on hormone replacement therapy because my natural hormone levels indicated that I was fully menopausal.  It was expected.  Only 1-3% of transplant patients are genuinely able to retain fertility.  After the first transplant, it looked like I would be one of the lucky few.  I was able to menstruate, etc.

I wasn't so lucky after the second transplant.  If I'm going to be absolutely honest about it, the fact broke my heart.  I mourned the fact quietly and came to terms with it.  Chris and I started investigating options.  They all cost more than most entry-level luxury cars.

I went on with my life.  I went back to school.  I set the thought of kids aside.

In February of this year a funny thing happened.  I started menstruating again after 2 years of nothing.  I talked to my local oncologist who told me that it happens.  I talked to my transplant doctor and she put in orders for me to see a specialist at MDA.  A month passed, and then another.  The periods got longer each time.  In May, the bleeding became continuous.  I became alarmed and pushed my transplant team on it.  They got me in to see the gynecologist that works with transplant patients.

She wondered why I was on hormone replacement therapy.  She told me what was happening wasn't unusual.  She'd seen it happen before.  She suspected that my reproductive organs had been quietly repairing themselves after so much chemotherapy.  She suspected that I was still fertile.

I didn't want to say anything.  I didn't want to hope.  I didn't want other people to get excited about the possibility, because I didn't want to believe it.  To believe that this could be possible opened me up to the possibility of having to grieve all over again.  I'd done that and I refused to go through it again.  And so I refused to believe it.

That didn't stop some small part of me from hoping.

Dr. R. ran tests.  I had a vaginal ultrasound to check out the equipment so to speak.  My blood work came back as inconclusive.  Dr. R. told me to stop taking hormones.  She scheduled me to return to MDA 2 weeks later for more tests.  They were also inconclusive.  Dr. R. scheduled more tests to take place a few months later.

I started to hope a little harder.  It became harder to keep myself from believing that maybe she was right.

I saw Dr. R. last week for those tests.  They were conclusive.  I am not fertile.  Technically, you have to go 1 year without menstruating before you can officially be declared menopausal.  Dr. R. put me on a different regimen of hormone replacement therapy.  It's a lower dose and different combination than the one I was previously on.

It was the original HRT that had caused the menstruation.

Now I'm working on accepting infertility all over again.  It's harder this time.  I don't want to talk about it.  I want to hide under the covers and cry my eyes out.  I didn't want to do much of anything last week.  I'll get over it.  I know I will.  Thankfully, I have sweet friends like Diana who understands the heartache.  She's held my hand through emails and Twitter.  I have very dear old friends like Heather who makes a point of calling me multiple times during the week.  She talks to me about the little things that happen on any given day and she listens to me complaining about school.  They don't push, they don't bring it up, and they don't tell me what I need to do to get over it.  They let me bring it up when I need to and they listen without pushing advice or opinions on me unless I ask for it.  I am grateful.

I don't think that I'll write about this topic again.  I won't close the door on the possibility, but right now I don't believe that I have any new insight to offer.  If you're a transplant patient or survivor in a similar predicament and have questions, feel free to email me.  I'll try to answer them as best I can.






Saturday, September 10, 2011

A heaping scoop of normal

It finally happened.

I am sick. After roaring through 2 semesters surrounded by students unscathed, I have finally succumbed.

This past Wednesday, a classmate who sits next to me in 2 consecutive classes came to school, plopped down next to me and proceeded to cough her head off. I held my breath. I averted my face. I emptied my little bottle of Purell. I developed a sore throat on Friday.

I saw my local oncologist's advance practices nurse after class. Her first inclination was to recommend a wait-and-see strategy. If things got worse, then I'd get antibiotics. She was very sweet, and very knowledgeable, but she wasn't my doctor's regular APN nurse. She was filling in and so she wasn't very familiar with my situation. I give her an immense amount of credit for knowing her stuff regarding transplant patients, though. She sees 2 long-time transplant survivors while assisting her regular doctor.

She knew about my GvHD of the skin, scalp, eyes, and mouth. She didn't know about the GvHD in my lungs. When I mentioned it after the wait-and-see diagnosis, she was surprised. She told me that I sounded too good. She's dealt with GvHD of the lungs and so she knows. Chris told her that I tended to be special when it comes to the presentation of special circumstances. I don't present normally. She conferred with my doctor and the decision was made to treat me aggressively out of an abundance of caution. They didn't want me in the ER over the weekend. I didn't want an infection settling in my lungs. My lung capacity is still diminished and the thought of trying to breathe through a chest infection made me twitch.

I started Z-pak yesterday. My throat is a little more sore today, but I don't feel any worse. Z-pak is a beautiful thing. I have several projects due Monday, Tuesday, and Wednesday, so I'll try to work on them between naps.

Before I forget, my doctor did order labs, so here are the results:

white blood cells: 10.6 k/ul (4.5-10.8)

red blood cells 4.03 M/UL (4.2-5.4)

hemoglobin: 12.8 g/dl (12-16)

platelets: 414 k/ul (150-350) I am a platelet making machine. I always tend to run on the high end, so no need for alarm.

absolute neutrophil count: 7.9 k/ul (1.5-10)

For all intents and purposes, my counts are perfectly normal for me.

Wednesday, September 7, 2011

Three years on

Three years ago, a complete stranger donated bone marrow to save my life. We were not a perfect match, but close enough. This complete stranger was the only person out of thousands of people on all of the registries who could, through the selfless act of donating, save my life. I'm one of the lucky ones. There are so many in need of a bone marrow transplant who have no viable matches.

A year later, I learned this stranger's name: Dana. A short while later, I received an email from her. I was surprised to learn that we are the same age.

Today, I marvel that I am able to sit in my home and enjoy most of the same activities I loved before the dark days of diagnosis and treatment. The small number of friends that I've made at school have no idea that I spent the better parts of 2007-2009 bald due to chemo. Today, I get to be myself. No awkward silences or difficult questions.

Today, I get to marvel at the novelty of being normal thanks to a beautifully selfless soul who took the time to register as a bone marrow donor.

Today, I get to thank her one more time.

Thank you, Dana.

Thursday, August 25, 2011

Back to School

Classes resumed on Monday and so I am that much closer to a degree. Financial aid is still up in the air and the gremlins that generate that entity's electronic correspondence are doing their best to bring on a nervous breakdown. GvHD of the skin and scalp have ramped up since I'm regularly in the sun on a daily basis now. As for everything else, there's been little change.

Saturday, August 13, 2011

A little GvHD

Yesterday, I noticed that my face was covered in a faint GvHD rash. It happens when I've been exposed to too much sun or heat most of the time. I don't think I can blame the sun for this latest episode, though.

The rash quietly emerged about an hour after I got off the phone with a harried counselor who worked in the financial aid department. Classes start in little more than a week and so these poor counselors are under attack by frantic individuals wanting to know where their money is. I realized this before I picked the phone up. I didn't want to make the call, but the tiny OCD bureaucrat that hides in a tiny compartment of my brain was insisting that I do due diligence. It's been a week since I sent in my appeals package. I wanted to be sure that the powers that be had received it.

I spent 43 minutes on hold waiting to speak to a human being. I was told that my case was still being processed and that the office was receiving such an enormous volume of correspondence that there was no way that the counselor with whom I was speaking could tell me if my paperwork had been received. Instead of insisting that she drop everything and spend the rest of her morning finalizing my case, I thanked her for her time and let her get back to work.

And I told myself that I wasn't stressed and got back to doing whatever it is I do on any given day.

Then the rash made its debut. I applied prescribed unguents and thought no more of it.

This morning, I awoke to a screaming rash on the entirety of my face that reaches back onto my scalp. It stops somewhere behind my crown and on a scale of 1 to 10 it is a constant 5 as far as itchiness is concerned.

Since I know stress over my financial aid situation has been the genesis of this latest round of skin GvHD, I plan on doing incredibly mindless things this weekend in an effort to counteract it. I have topical prescriptions that will help with the rashes and itching, but until I chill out, they won't go away entirely. I've been down this road a few times. If you need me, I'll be on the couch surrounded by diet-blowing snacks. I might even share if you ask nicely.

Monday, August 8, 2011

Norming

Little by little, I'm learning that I'm no longer programmed to deal with the regular stresses that confront people every day. Throw some medical drama my way and I flip over to automatic and cruise on through it. I've been handling extraordinary medical situations for too long.

The only drama I'm currently facing is of the generic variety. My financial aid package is in limbo.

I have seven classes left to take at LSU. Five of them are to complete my degree in Construction Management. Two of the classes round out a minor in Business. I'm currently working on two of theses courses via the distance learning program.

What I'm hoping to remember as my last fall semester begins in less than 2 weeks and my status is in a bit of limbo since my financial aid package is under review. Last year, I wasn't able to complete enough hours to satisfy aid requirements. I was only able to complete six hours each semester thanks to GvHD of the liver and lungs. If I'm going to be honest about it, I shouldn't have been able to finish that many. Sheer stubbornness on my part and the understanding of some amazing professors got me through.

And so now I wait. I put my appeal package in the mail yesterday. I will resist the urge to call the poor beleagured employees of the department of financial aid every twenty minutes. I will continue to work on my independent study lessons. I will systematically chew off every one of my finger nails. I will stress out over this very mundane thing that I know will be resolved and all the while, I will not be thinking about cancer. I suppose it's the small victories that matter most.

Sunday, July 31, 2011

Living my life

It's been too long since my last post, but I don't have anything to really share. I did see my local hematologist last week and my blood work was blissfully normal. Every single number, save for the red blood cells and platelets which were so very close to normal--I'm talking fractions here, that Dr. B. considers them normal.

Chris continues to be treated for medical issues arising from June's car accident.

I'm trying to get financial aid straightened out for the upcoming school year. I wasn't able to take enough hours last year to automatically qualify, so I must file an appeal and acquire documentation to satisfy the department as to the reason for my lighter than usual load. I think having a liver the size of a newborn and lungs full of infiltrates might qualify.

I continue to work on my independent study classes and keeping a low profile.

Friday, July 15, 2011

Excitement for the week

This past Monday, I received a paper copy of my schedule of upcoming appointments at MD Anderson. I'll be honest, I usually only skim these letters. I've become spoiled by the internet and prefer to check for my appointments through MDA's website. This time, I paid attention.

I was scheduled for a bone marrow biopsy in September. I'd just had a biopsy in June following March's strange findings. At my last visit in June, Dr. K. told me that I wouldn't need to be back until December. Having done this dance for the last 4 1/2 years, I have learned that something like this generally means that the results of your last test were questionable. It was the first thing that came to mind and it left me feeling a little disturbed.

I didn't feel like I had cancer. I certainly didn't feel like I had some strange mutated chromosome lurking deep in my marrow. I did have a t(4;11) translocation when diagnosed with leukemia. I know you can't feel something so very minuscule on its own, but you can feel the cascade of symptoms it accompanies, like leukemia.

I felt well. I felt like myself. I pushed the kernel of worry into the bag I keep next to the box in my mind that holds the really scary stuff. I sent an email to my transplant nurse asking about having a bone marrow biopsy so soon after my last one. I waited.

Cathy forwarded my message to Dr. K. I got the news yesterday: the cytogenetics from June were clean. The t(7;11) translocation found in March's biopsy was an artifact. I don't have cancer. I celebrated by going to the grocery store, because after so much time spent in isolation, feeling like a creature from another world, that's what you do. It made me happy to do something so fundamentally normal. Buying 3 types of ice cream didn't hurt either.

Saturday, July 9, 2011

The other half

The last month that I was on steroids, my total weight gain ballooned to 30 pounds. I was still hitting the treadmill for 80-100 minutes a day, 5 days a week and watched every single thing I ate. I can only assume that my body's hyper-sensitivity to steroids was partly to blame. My pokey metabolism is also culpable.

I stopped taking steroids in March and for a month, I tried really hard to start losing the weight. I consistently worked on the treadmill and even started substituting low calorie, high protein shakes for lunch. To show his support, Chris even started drinking the not so yummy shakes. I managed to lose 2 pounds. He lost 8. My local oncologist assured me that once the weight started coming off, my weight loss would probably accelerate.

It didn't, so I decided to sign up for a weight loss program. I'd been dithering about doing it for weeks, but after talking to my sweet friend Wendy who was doing the program, I signed up. I'm not going to name the program since they get enough promotion, but will tell you that it's the one where you count points. Yes, that one.

I lost 3 pounds the first week. It's been 7 weeks now and my total weight loss, including the hard won 2 that I lost on my own is 14 pounds. The diet is really easy to follow and there's nothing that I can't eat so long as I balance my points. Chris is losing weight as well since he essentially eats what I've prepared.

I've been tinkering with some recipes and have come up with 2 that I'm happy to share. The first is for mac and cheese and was inspired by The Pioneer Woman's fancy macaroni. Her's is to-die-for delicious and laden with butter.

Here's my take:

Ingredients:
2 Cups uncooked wheat macaroni elbows
2 TBS butter
2 TBS all-purpose flour
1 1/4 Cups skim milk
1 egg yolk
1/2 tsp kosher salt
1/2 tsp ground black pepper
1/4 tsp onion powder
1/8 tsp nutmeg
4 ounces Kraft 2% milk shredded cheddar cheese
1/2 Cup 1% milk cottage cheese
3 strips bacon, cooked and coarsely chopped

Preheat the oven to 350 degrees.

Cook the macaroni according to package directions.

While the pasta is cooking, melt the butter in a saucepan over medium heat. Once the butter has melted, whisk in the flour until it's completely incorporated. Pour in the milk, whisking until thickened, about 3 to 5 minutes.

In a separate bowl, lightly beat the yolk. While whisking constantly, slowly drizzle some of the thickened milk mixture, about 1/4 cup, into the yolk. Once totally incorporated, add this back into the saucepan and whisk until fully blended. Stir in the salt, pepper, nutmeg, and onion powder.

Add the cheddar and cottage cheese to the saucepan and stir until the cheese has blended, about 5 to 10 minutes. For whatever perverse reason, the cottage cheese takes the longest time to break down. Be patient, it will happen. Once the sauce is smooth, stir in the chopped bacon.

Stir in the cooked and drained pasta, then pour the entire mixture into a small baking dish--I use an 8 x 10, and smooth out the top. Bake for 15 to 20 minutes. The recipe makes 6 to 8 servings.

As the recipe is written and divided into 6 portions, each portion is 8 points on the diet that shall not be named. It's a big serving and could easily be cut down. The recipe is really flexible and can be tailored to suit your tastes. Change the seasonings or the types of cheese. If you prefer stove-top mac and cheese, leave the egg yolk out of the recipe and skip the oven. The bacon adds a nice smokey, salty element. The cottage cheese makes the sauce incredibly creamy. It doesn't taste like diet food and passes the Chris test.

The second recipe satisfies my sweet tooth and gives me something to do with over-ripe bananas.

Banana muffins:

Ingredients:
3-4 really ripe bananas, mashed
1 egg
1/3 Cup butter, melted
1 1/2 Cup all-purpose flour
1/4 Cup plus 2 TBS packed brown sugar
1/4 Cup plus 2 TBS splenda for baking
1 tsp baking powder
1 tsp baking soda
1/2 tsp salt
dash of cinnamon


Preheat the oven to 375 degrees. Lightly grease a 12 muffin pan or line with cupcake papers.

In a large bowl, beat together the banana, brown sugar, splenda, egg, and melted butter until thoroughly combined, about 2 minutes.

Add the flour, salt, cinnamon, baking powder, and baking soda and mix until just combined. Don't over mix it or your muffins will be dense and tough.

Spoon the batter into the muffin pan and bake for 18 to 20 minutes. One muffin equals 4 points on the diet.

*I've tried this batter for banana bread. It doesn't quite work in loaf form.

Monday, June 27, 2011

Preliminary results

The preliminary results of my bone marrow biopsy from 6/20 showed no leukemia. I won't know anything about the flow cytometry for a few more weeks. As for the cytology study, the results are still a few months away. It was the cytology report from March that showed the strange translocation, and so it is the current cytology report that we're waiting on.

Chris is still suffering from the car accident. Interactions with the at-fault driver's insurance company have been difficult. As of this moment, nothing has been resolved. We've retained an attorney, so I won't be discussing the event on the blog. When I'm able to say something, I will post.

Tuesday, June 21, 2011

Stumping my poor doctor

My life has been a bit more full than I would like this month. I'll take pity on you all and only talk about the last few days. Friday, June 17, Chris was in a horrible car accident. While Chris was driving in to work, a man in a super-duty pick-up truck drove through an intersection and hit Chris' car right in the driver's side door. The other driver did not have the right-of-way and drove across 2 lanes of oncoming traffic and through a median. The impact caused Chris to hit his head against the pillar between the driver's side and passenger window. He was taken to the ER and had a CT scan as well as X-rays.

I got to the hospital while he was out getting scanned. He was discharged a few hours later and has been recovering since. There's still a bump on his head and he continues to get headaches in addition to being sore all over. Thankfully, he didn't break any bones.

We're in the process of dealing with the other guy's insurance and that's all I have to say about it. I'll keep everyone posted as to Chris' recovery.

As for me, I had a few appointments in Houston on Monday. One was a regular check-up with my transplant doctor. The other appointment was for some testing related to my transplant, but having little to do with leukemia. I haven't blogged about the issue, and am sorry for being cryptic. I'll post about it in detail once the test results come in and I have a better understanding of what's going on. All I know is that it's not life-threatening and so you shouldn't worry.

The cytology report from the bone marrow biopsy I had done in March was finally available. My doctor had ordered several molecular studies that are routine when dealing with bone marrow transplant survivors. Some of these tests take days, most take weeks, and some, like the cytology study, can take months.

The FISH test showed no leukemia clones with a MLL gene rearrangement. Clone cells are effectively the little buggers that kick off the whole leukemia process The clinical flow cytometry study was negative for minimal residual B-lymphoblastic leukemia (this is the type of leukemia I was originally diagnosed with).

I rarely go into this much detail when sharing results, but felt it was necessary so that you all could put the next set of results into perspective.

The cytology report showed an anomaly. 20 cells were studied. Of those 20, 19 were diploid female karyotype 46, XX. This means that they were normal, female and had the correct number of chromosomes. 1 cell was determined to be pseudodiploid metaphase 46, XX, t (7;11) (q22;q13). Fundamentally, this means that the cell was captured in the midst of development, that the correct number of chromosomes was present, that it was female, and that it had a translocation of the number 7 and 11 chromosomes.

Generally speaking, a translocation occurs when portions of the chromosome swap places. That's a quick and dirty definition and doesn't encompass the whole of the process. To further put things into perspective, my original leukemia included a t (4;11) translocation which meant a transplant was my only hope.

Before yesterday, I'd never heard of a t (7;11) translocation associated with ALL. Dr. K. explained that it simply doesn't happen with my form of leukemia. My transplant doctor was very thorough in explaining what this finding could mean. She believes the cell was an artifact, meaning that it was a one time occurrence. The cell may have been created during the process of testing. For the sake of due diligence, another bone marrow biopsy was scheduled for the same day. She wants the same tests performed to see if another cell with a t (7;11) translocation appears.

If it does show up again, I'll be monitored. I'll probably start taking maintenance chemotherapy if it does, but that's not certain. As my doctor explained it to me, there are no studies to guide any treatment. I got the impression that the transplant doctors that discuss my case would be making it up as they went along.

That is the worst case scenario.

I want to stress that my doctor felt that we weren't going to have to go there. I believe her. I can tell you that I feel well. I don't have any of the symptoms that were present when I relapsed in 2008. I'll even go so far as to tell you that the cashier in the hospital cafeteria gave me an employee discount because she thought I worked at the hospital. She didn't believe that I was a patient. When strangers mistake you for a hospital employee rather than a cancer patient, you want to do a little dance, because it feels like you just regained your normal badge.

To further put everyone at ease, here are my blood counts, including normal ranges:

White blood cells: 8.8 K/UL (4.0-11.0)

Red blood cells: 3.88 M/UL (4.00-5.50) It's low, but most transplant patients have a hard time with making red blood cells. The only transplant survivor who I know that has a regular red blood cell count is Nancy and she just celebrated her 5th year post transplant. Love you, Nancy.

Hemoglobin: 12.1 G/DL (37.0-37.0)

Platelets: 414 K/UL (140-440)

Absolute neutrophil count: 6.56 K/UL (1.70-7.30)

My counts are essentially normal. When I had cancer, my white blood cell count was phenomenally high while all of my other counts were close to nothing. The same held true when I relapsed. I believe my doctor when she tells me that this new translocation is probably an artifact. I won't know for sure until the new cytology study is done. I won't have those results for a few months. Until then, I'll continue to monitor myself and check in with my local oncologist.

One more thing to help put this into perspective. My next appointment with my transplant doctor at MD Anderson isn't for 6 months. If she was anxious about anything, she wouldn't have given me such a long break between visits.

As for the other health thing that I'm being so cryptic about, the specialist I'm seeing will have the results in a few weeks. I'll disclose everything once I have the information.

Saturday, June 11, 2011

Dori

Most of my regular readers will probably know that Dori Brown was stolen by cancer this week. I say stolen because I still believe cancer is the worst kind of thief, indiscriminate and indifferent to its victims and their families.

If you haven't read her story, you can find it here and here.

The first thing you might notice when you go to either site is her unbelievably bright smile, or maybe you'll notice the warmth in her eyes. I was lucky enough to meet Dori in April and I can honestly say her pictures don't do her justice. She was so much more vibrant in person. For lack of a more poetic description, she was just so Dori.

I've wanted to write something to honor her since I learned the horrible news, but my heart has been filled with tacks and the words refuse to come.

Dori was an infinitely gorgeous soul who touched every single person she came into contact with. I came to love her through her sweet husband's beautiful writing and meeting her in person only served to solidify my belief that she was one of those very unique individuals who instantly inspires love.

My heart hurts for Jim and their beautiful children, and I wish I could write something more fitting, but I just don't have the words.

Saturday, June 4, 2011

Milestones that don't include cancer

Today, Chris and I are celebrating our seventh wedding anniversary. Not in a hospital. Free of cancer. At home. It feels good to be able to say those things.

Happy anniversary to the love of my life. I wouldn't be here today if not for him.

Friday, June 3, 2011

Help PJ

My friend PJ is running the New York City marathon to honor our mutual friend Dori. PJ's a member of the 2 time transplant club and an all around amazing person. She's training for the marathon through Team in Training, affiliated with the Leukemia and Lymphoma Society. Please donate through her TNT page to help support cancer research and provide services for the many patients in need. Do it for Dori.

Here's PJ's latest post with website information:

Help Me Blood Cancer Patients

I'm running the NYC Marathon in November to raise funds for Team in Training, specifically in honor of Dori Brown. Please pass on this message to anyone you know who is able to help this cause, our cause.

Thanks for your help.

http://pages.teamintraining.org/nyc/nyc11/pjempty

Saturday, May 21, 2011

The blog hasn't been abandoned

I haven't abandoned the blog. I'm here and I'm working on something to post, but it's not quite right yet. I managed to pass the 2 classes I was taking this semester, which is a relief. I saw my local oncologist 10 days ago and all is well. My liver numbers were a little low and my white blood cells and platelets were a little high, but according to Dr. B., the difference was so negligible as to be insignificant. I'll see him again in a few weeks. I've started working on the 2 independent study classes i elected to take over the summer and have been surprised by the amount of work expected for 1 of them.

Right now, I'm heartsick over Dori and don't feel like writing much of anything.


Wednesday, May 4, 2011

A tiny update

Tomorrow is the last day of class for me for the semester. I got an email from one of my professors yesterday with a breakdown of my grades and a note. I'm one of only 4 people in the class with an A average, so I don't have to take the final. It's my law class and the news makes me supremely happy since the final is made up of 200 questions spanning topics covered over the entire semester.

As for my other class, I'm a bit concerned since I didn't do so well on the last test. A few of these classes have been cancelled over the last month which has meant cramming twice the material in when we do have class. It's a lot of higher math and my poor chemo addled brain isn't keeping up. I need to get at least a C in the class in order to move to the next section of the same topic next semester. If I don't, I'll fall behind a semester and graduation will get put off.

I've been out of the game for 4 years, so you might imagine my anxiety at having to repeat a class that I had to drop last semester due to health issues. I'd rather eat dirt. My final isn't until May 13, so I plan on spending my days studying, which is why it will be unlikely to read anything further on the blog until after that date.

As for my health, I feel great. I'm back on the treadmill and clothes are fitting a little better as the steroid swelling slowly recedes. I still have close to 30 pounds to lose and it is slowly happening.

Tuesday, April 19, 2011

One month off steroids

It's been one month since I stopped taking steroids and I can now fully appreciate the difference their disappearance has made. I'm not compelled to continually eat and I'm sleeping through the night. I stopped taking Lasix and Potassium supplements 3 weeks ago. I no longer need to plan my day according to my proximity to a bathroom.

I've lost a kilo (2.2 lbs) since my last check-up at MDA. This is in spite of the fact that I took a month off from the treadmill. My face is thinner. I'm able to climb stairs again. There's a unicorn in the backyard.

Okay, that last sentence isn't true, but there is a vegetable garden and everything in it is still alive. We even have one tiny grape tomato just beginning to take shape. We also have a cut worm infestation bent on destroying our efforts. It's like Green Acres on a very small scale minus Arnold the pig.

Dr. K. had a terrible cold, so she wore a mask and stayed on the other side of the exam room. She told me that my numbers look good and that I don't have to return for another 2 months. Music to my ears. I got to catch up with my APN, Bev, who cracks me up and Katie, a nurse who looked after me during transplant number 2.

In case you're interested, here are the numbers:

WBC: 10.3 (Normal)

RBC: 3.76 (Low)

Hemoglobin: 12.2 (Normal)

Platelets: 379 (Normal)

ANC: 7.5 (High due to the effect of steroids, but coming down.P

My magnesium level is still low, but acceptable. My liver counts are solidly normal. My tacrolimus level is right where the doctor likes it. She said that I might be able to go to a lower dose after my next visit. The rest of my medications remain the same.

Life is good. The cats are good. Chris is good. I can't ask for anything more.

The friends you will make

I've spent a lot of time inside my own head these last two weeks when I wasn't busy with school work. I've been thinking about a few of the contradictions you come to live with after a cancer diagnosis and how they've changed the way I connect with people. I'm unsure of how to interact with people in some social situations thanks to cancer and I'm less tolerant of particular behaviors. I can't hear some one sneeze without feeling the overwhelming need to whip out the Purell.

One of the biggest mysteries of life post cancer diagnosis for me is how I can feel more connected to people I've never met than people I know in real life. I've made plenty of virtual friends since being diagnosed in January 2007. Most are also cancer survivors. I've been able to read their blogs and correspond through emails and twitter. I regularly talk to my friend, PJ, who is stalwart in calling this phone-phobic girl.

We all share a connection through our collective experiences. Sometimes we measure our own progress against each other. Sometimes we look for what we should expect in our own journeys. And mostly, we share in the little victories that remind us we're one day further from that dark day of diagnosis.

I started following Jim and Dori late in 2007. Dori was diagnosed with AML in 2007, a few months after my diagnosis of ALL in the same year. Chris and I checked in on them regularly and we saw a lot of our own story in their writings. It's hard not to start caring about people you've never met when you peek in on their lives every week.

Dori had a matched unrelated donor transplant with a 10/10 HLA match at Vanderbilt and was getting back to living her life and raising her 2 beautiful kids. Last summer, she relapsed and suffered with one hell of a bout of GvHD. She spent 53 days in the hospital. The cancer went into remission. The extreme GvHD acted like a sort of mini-transplant.

2 weeks ago, I read the news that Dori had relapsed again. I never imagined that I would get to meet Jim and Dori since we live so far apart. When I read that they were going to MD Anderson for a second opinion on treatment options the week before I had an appointment to see my transplant doctor, I thought it might be more than a coincidence.

I got to meet Dori in the flesh yesterday while she was receiving chemotherapy. I don't know that I can adequately explain the instant sense of connection you get when you look into the eyes of a fellow survivor. You just know. You speak the same language regardless that you don't share the same disease or experience.

I looked Dori in the eye and recognized her determination and grit. She has her game face on. She's taking notes and asking questions. She's getting ready to kick cancer's ass.

I didn't get a chance to meet Jim because he was driving back from Tennessee, but I got to talk to him on the phone. He reminded me a lot of Chris and I know he's going to be Dori's biggest advocate.

MD Anderson can be a very overwhelming place, especially your first week there. I don't know if our visit helped, but I do know that I'm grateful for the opportunity to talk to another tough chick whose story I've followed for the last 4 years.

Friday, April 1, 2011

Unintended absence

I've been buried under a load of schoolwork and have had 3 tests in the last 2 weeks. It's been brutal. As far as my health is concerned, all is well. I had a check-up with my local oncologist today and he gave me a clean bill of health. My chemistries are normal. My platelets are over 400 and my white blood cell count was 9.5 k/ul. That's the high end of normal. My weight is the same as it was at my last check-up 4 weeks ago, which means that I've lost the 2 pounds I gained right before my last MDA visit. I know that's a little confusing and I apologize.

Dr. B feels that the weight will come off quickly once I hit my stride. I reminded him that it took a year to lose 24 pounds last time. We'll see.

That's all I have to report for now.

Saturday, March 19, 2011

March's MDA recap

WBC: 12.6 K/UL (4.0-11.0)

RBC: 3.65 M/UL (4.0-5.50)

HEMOGLOBIN: 13.0 G/DL (12.0-16.0)

PLATELETS: 333 K/UL (140-440)

ANC: 9.52 K/UL (1.70-7.30)

LDH: 547 IU/L (313-618)

ALKALINE PHOSPHATASE: 59 IU/L (38-126)

ALANINE AMINOTRANSFERASE: 12 I/UL (7-56)

I had my monthly visit to MDA and all seems to be well. I was scheduled for blood work, a bone density scan, chest x-ray, complete pulmonary function test, bone marrow aspiration/biopsy, and 3 specialists. As you can see from my blood work, my white blood cell and absolute neutrophil counts are still high due to steroids. My liver is behaving and I am grateful. We are once again friends and I will do everything within my power to keep it this way.

The day was full of pleasant surprises, the first of which being the result of my PFT. My lungs are still showing restrictions which is to be expected given the volatile nature of GvHD. 3 months ago, my lung function was at 66%. This week, I'm at 75%. The pulmonary specialist prescribed a rescue inhaler in addition to the inhaled steroids I already take. When I questioned her on the reasoning, she told me it was only a precaution and that I may never use it. She wants me to have it on hand just in case. Since allergy season is in full swing and I'm already having issues, I should be thankful to have it.

My endocrinologist and I were both pleasantly surprised by the results of my bone density scan. I've gained 9.2% in my spine, and over 5.5% in both hips. I've made gains in all of the areas that were tested. Dr. J. confessed that he was expecting a 3% increase at the very most and was prepared to see a 1% increase. He advised me to keep doing what ever it was that I'd been doing. When I told him about the marathon sessions on the treadmill 5 days a week, he laughed and told me to add in weight training. He was serious, and so I will.

These increases bring me out of the osteopenic danger zone and into the very lowest level of normal. Dr. J. told me that I would never be able to recapture the measurements taken before my very first round of chemotherapy, but that I could come close. He likened any increases to making deposits into the bank. I may have to rely on these one day to keep me from shattering a bone.

I saw my transplant doctor almost immediately after having the bone marrow biopsy, so no preliminary results were available. Full results won't be in for another month. We're hoping for no molecular residual evidence of disease. Since this was my 30 month biopsy, I shouldn't have another for a year. Never say never, though.

Dr. K. is concerned with my weight gain. I picked up a kilo since last I saw her. I have been hitting the treadmill and even went so far as to replace my regular lunch with a high protein, low calorie shake 3 weeks ago. Chris started drinking them a week ago and has already lost 2 pounds. She's undecided as to whether the weight can be attributed entirely to steroids or GvHD of the dermis. My skin is still supple, so she's hoping it's the steroids. To test the theory, she's skipping any more tapers in favor of stopping the methylprednisolone altogether. I have my fingers crossed that I can lose a little weight before I see Dr. K. next month.

If it turns out to be GvHD of the dermis, I'll have to go back on high-dose steroids. Boo.

As a special treat, I got to meet a twitter friend in real life. I met Jody through my friend, Lisa. Not only is she an amazing person, but she's also a cancer survivor. When she heard that I'd be at MDA, she offered to drive in for a meeting. We got to visit for 2 hours, but it didn't seem like nearly enough time. She is just an amazing, caring, gracious soul and I'm so happy Chris and I got to meet her in person.





Chris and I celebrated this weekend by putting in a vegetable garden. This is our first attempt at growing anything edible and we're hopeful. We planted bibb lettuce, mesclun mix, carrots, 2 types of bell peppers, and 3 types of tomatoes. Since my friend, Lisa, asked for pictures, here they are:




Very few people know that I have an obsession with products flogged through infomercials. I am fascinated by them. Lest you think my house is filled with these same items, rest assured, my curiosity remains mostly unfulfilled. When I saw the Topsy Turvy in all of its as-seen-on-TV cheesy glory at the big box DIY store, I had to give it a shot. There are 2 varieties of tomatoes planted in the traditional garden, and a Creole tomato specimen in the upside-down planter. I'll pretend it's a science experiment.



We started 2 trays of herbs from seeds a few weeks ago. They seem to be doing well and may be ready to transplant into bigger pots in about 2 weeks. In case you're curious, we planted: chives, cilantro, marjoram, thyme, rosemary, oregano, sweet basil, parsley, and Thai basil. There's also a tray of snapdragons that we started last week. The sprouts are so tiny, I didn't want to torture you with them.







Chris also set up an irrigation system that I helped put into the garden. This should help shelter the plants from my forgetfulness. We planted containers last weekend, but forgot to take pictures. I'll post them some time next week.

Saturday, March 12, 2011

Please Help

I can't say anything about the situation in Japan that hasn't already been said. Our burdens are small in comparison to the depths of agony and magnitude of suffering taking place.


We have a chance to ease the grief of the Japanese people and help them rebuild from this unprecedented disaster.

Please consider making a donation to the Red Cross at the following link.

American Red Cross: Japan Earthquake and Pacific Tsunami

Chris


Monday, March 7, 2011

This and That

Forgive the tardiness of this latest post. My laptop has decided to have a mid-life crisis and insists that it's an overpriced paper-weight, rather than a computer. I'm fairly certain the problem has much to do with the operating system. I'll fool with it some time this week when I feel like banging my head against a wall. I've inherited Chris's laptop, which is rather nice considering how much faster it is than my little work horse.

Very little has changed since I last updated. My weight is still up. I've now gained 24 pounds. When I was on steroids in 2008-2009, I gained 24 pounds. I was only on the blasted pills for 4 months then, so I should be grateful that I haven't gained more this time around. I'm exercising and have modified my diet once again. Last week, I was down 2 pounds. I'm almost convinced that it's time to join a program.

I do have one happy event to report. Last Thursday, I was able to climb 2 flights of stairs without passing out at the top. I've been gearing myself up for this little adventure for weeks. The only thing holding me back was that I knew that I couldn't use the handrail to help me along. There's a valid reason. The stairs in question lead to my 2 classes in PFT Hall. The handrails are regularly cleaned throughout the day by the janitorial staff using the same mop and water that was just used to mop the floor. We've all seen the murky water and gray mop heads go straight from the one task to the next. There's not enough hand sanitizer in the world to tempt me to touch those things on purpose.

I was early for class and there weren't a lot of people around, so I took the chance. Half way up the stairs, I remembered the backpack full of binders and books strapped to me. I managed the extra weight just fine. It's funny for me to think that I can spend 100 minutes on the treadmill without a problem, but actually bearing my own weight 6 inches at a time gives me pause. I'll keep trying. It's the only way to succeed.

Friday, February 25, 2011

Monthly visit with my local

I saw my local hematologist/oncologist last Friday. All is well. I don't have any numbers to post because I didn't see them. Chris was with me and had a look at the computer while we waited. According to him, my white blood cell count is 12 k/ul. That's down from 2 weeks ago and technically, the high end of normal.

Dr. B. said all of my numbers are normal and joked about my medication list looking like it belonged to a little old lady. It really does. I'm still on quite a few drugs.

My hair continues to fall out. It's gotten to the point that I can't cover the thinness with a well placed comb-over. I saw my stylist, Lydia yesterday and artist that she is, she cut it in such a way that there is the illusion of volume. I adore her.

Dr. B. thinks the thinning hair may be due to GvHD. My transplant doctor speculated that it was GvHD as well. I've been using a steroid topical solution on my scalp and have noticed that I'm not losing as much hair. I won't be able to see any new growth for 23 days. Until then, I'll continue in my quest for a certain real estate tycoon's comb-over secrets.

Chris's broken arm continues to heal. He has another appointment with the orthopedic surgeon in 2 weeks. He's getting more range of motion back, and able to do more for himself. Next week, he wants to try driving. I'm not so sure.

Cancer is a Thief

I've spent the last few weeks so caught up in class-work that I haven't had enough brain power to spare for the little things. I haven't read a book for pleasure in ages and I haven't written a word.

My friend, Lisa, recently posted a piece about the crazy things people say to you when you have cancer. It made me start to think of many of the cliches we've all been subjected to when friends and strangers are trying to offer comfort. I don't fault most people. It's hard to know what to say and they often feel compelled to say something. Unfortunately, a multitude of people lack filters and so they say the first thing that comes to mind. I've heard some fairly shocking things and I've gotten some truly hysterical questions. One friend thought a bone marrow transplant involved having all of your blood removed and replaced with healthy blood. I did not laugh as I explained the procedure, but I howled when I was out of earshot.

The one cliche that bothers me most is, "Cancer can be a gift."

Really? If so, I'd like the receipt so that I may return it for something a little more me.

Cancer is a thief.

It siphons away your life and dominates your thoughts and time. Cancer steals your joy and robs your loved ones of their peace of mind. It may slowly creep into your life, or explode in your lap when you're having the best week of your life.

Friends who can't cope with your diagnosis slip and slink away, glad that it's you and not them.

Cancer separates you from your orderly little existence and forces you to fight for what matters. It is a constant companion, even when your body is free of the dirty little mutant cells. The word always finds a way to slither into your thoughts so that you waste precious time and energy on the "what ifs?"

Cancer robs your body. Treatments are toxic and leave a lasting impression on your organs, joints and muscles. You may have scars from surgeries or procedures.

Cancer is not a gift.


Thursday, February 10, 2011

For once, it's not me

Chris and I spent the better part of last night at the after-hours clinic in Pairieville. For once, I wasn't the patient. Chris slipped while walking through the living room and fell on his right side, taking most of the impact in his arm and shoulder.

X-rays revealed a longitudinal fracture of the right radius. The clinic nurse wrapped his arm in a splint and gave Chris orders to follow up with an orthopedic surgeon today.

His mom was a total all-star and took time off from work to bring him to his appointment while I was in class.

The doctor informed Chris that the bone in his right forearm had been crushed, but probably wouldn't require surgery. He has to wear a hard splint for several weeks and follow up with physical therapy.

Right now, he's miserable and in pain and unable to work since any rotating motion in his wrist causes the bone fragments to pull apart.

I'll keep every one posted on any new developments.


Wednesday, February 9, 2011

WBC: 14.9 K/UL (4.0-11.0)

RBC: 3.57 M/UL (4.00-5.50)

Hemoglobin: 12.5 G/DL (12.0-16.0)

Platelets: 368 K/UL (140-440)

ANC: 13.78 K/UL (1.70-7.30)

ALC: 0.68 K/UL (1.00-4.80)

Alkaline Phosphatase: 55 IU/L (38-126)

Alanine Aminotransferase: 18 IU/L (7-56)

LDH: 671 IU/L (331-618)


Where do I begin? For the most part, my blood work is normal. My liver is behaving. My white blood cell and neutrophil counts are still a bit elevated thanks to steroids, but not alarmingly so.

My weight is still up. Dr. K. is unhappy about it. Since I last saw her a month ago, I took it upon myself to modify my diet. I cut back on my daily calorie intake. I increased my water consumption from 2 liters a day to close to 3. I continued to exercise. Monday, I weighed in at 158 pounds. The exact same weight I was a month earlier. My waist is even a bit thicker than it was. Dr. K. asked me to cut fat consumption back even further, then she apologized for having to ask it. I do love my doctor.

It's the steroids. I know that. They cause fat to be deposited differently in the body. In my case, the fat settles around my middle. I have the kind of pot-belly that can regularly be seen during summers in the south when guys let it all hang out at their camps on Lake Maurepas.

Dr. K. cut my steroid dose in half to 4 mg every other day. She also warned me that I could expect to be on this dose for 3-6 months. There are 2 reasons. First: If the steroids are stopped too soon, my immune system could stage another attack on my organs and I'd have to start the high-dose steroid train all over again. I've managed to evade AVN twice, I don't know if I could do it a third time. The second reason for continuing on a low dose for such a long period is thanks in large part to my lazy glands. Your body doesn't start making its own steroids naturally until 1 month after you've stopped taking them. This applies to individuals who've been taking high-dose steroids over a long period. You shouldn't worry about it if you get a dex pack for mono. The course I've been moved on to is like a primer for my adrenal glands. They need to start getting ready to take over. From past experience, I know that I will be lethargic and unmotivated over the next few weeks as my body becomes accustomed to the lower steroid dose. I've already reminded Chris.

I'm still retaining fluid to the point that I can't wear my wedding ring. Dr. K. advised me to move from taking Lasix as needed to taking it every day.

As for the ongoing problem I alluded to in the last blog post, my hair has been falling out for the last 2 months. It's gotten to the point that I have to very strategically style it in order to cover my scalp. Dr. K. wasn't sure if it was due to GvHD or steroids. At the moment, there's nothing I can do about it. The dermatologist who specializes in GvHD wasn't available to see me on Monday. Dr. K.'s team is going to try to get me in next month to see Dr. H.

Overall, I'm well. Classes have kept me really busy, but I'm enjoying the challenge. Chris is busy with work. The cats are occupied with the business of being cats, which I'm sure involves schemes to get more treats and plots to oust the stinky humans from the bed.

Sunday, February 6, 2011

Not much happening

A token post to let you all know that this week has been relatively quiet. There has been an ongoing issue that I think is related to my thyroid and various medications that I'll discuss in the upcoming week. I'm heading to Houston tomorrow, so I'll check-in again Wednesday with an update.

Saturday, January 29, 2011

Catching up

The month of January has been populated by pseud-minor house related calamities. I haven't blogged about them because it's been such an effort to get the issues resolved. After a month of waiting for estimates from various contractors and then dealing with some of their crazy personalities after receiving said estimates, we settled on a larger local outfit. It was 2 weeks before there was an opening in their schedule in order to fix our chimney. It rained something like 10 of the 14 days while we waited.

The chimney is now fixed and they did a fantastic job. Then the over-the-range microwave had a complete meltdown while I was reheating something. It made the kind of noise you'd expect to hear while watching a really bad 1950's sci-fi movie about a crazy scientist. Think exploding vacuum tubes. Then there was the smell of ozone.

I lived in the time before microwaves were in every household. I spent the first 10 years of my life blissfully unaware of the supreme convenience of such devices. 7 days without this luxury nearly drove me crazy. I would be doomed if you dropped me in the wilderness.

The new OTR microwave was installed last week. The day it went in, I went out and bought microwave popcorn. Just because I could. Now the range is making a strange clicking noise intermittently. Until the range completely dies, I will deal with it.

Seemingly, all that remains is to paint the ceilings to hide the water stains from this month's adventure. It can wait until spring break.

As for me, the weight is still with me, as is the fluid retention. The 3 days of doubled lasix helped to reduce the swelling in my hands. Since I'm supposed to take it as needed, I decided to skip a day to see what would happen. Misery. The fluid came back with a vengeance. Exercise isn't making a difference and so I've made more adjustments to my diet. They haven't been helping, either. I'm resolved to being patient. I know the weight will come off and things will return to normal in a few months.

On a really bright note, the steroid yuckies seem to be resolving and I feel like a normal human being again. I'm sleeping more soundly and feeling less blah, for lack of a better description. The swelling in my face and neck is slowly resolving and most days it doesn't look like my cheeks are trying to swallow my eyes.

Classes are going well. Because of the materials being studied and the way the professors have structured the classes, I'm guaranteed homework and a quiz in each class every day. I can also count on being called on to answer questions about construction law in Louisiana. It is convoluted and a little crazy. After having taking a construction business administration class, I wondered what compelled people to start their own construction outfits. Now that I'm learning a little something about the laws that govern construction, I'm really curious. The odds seem to be stacked against you from the beginning.

I'll try to get something up on the blog once a week. Because of my schedule, I can't guarantee a certain day. Just know that I am well. Chris is well and the cats still rule the roost.

Sunday, January 23, 2011

Happy Birthday


My friend, Patricia, who is also a two time transplant club member is celebrating her birthday today. Happy birthday, PJ!


Friday, January 21, 2011

Holding an ocean

The new semester started Tuesday and thanks to the internet, one of my professors was able to post assignments ahead of class. I have been hiding under textbooks since Sunday. Last semester gave me a good sense of what I might be able to handle this time around. I'm only taking two classes: Construction Law and Statics/Mechanics/Dynamics. Both classes require a lot of outside reading and both professors have structured the coursework so that you will always have something due each class period, or a quiz at the very least.

Earlier this week, I noticed that my fingers were swollen to the point that I couldn't get my rings off. I've been taking lasix, so this shouldn't have been the case. I contacted my transplant team and was advised that I could double the lasix dose for three days, but I'd need to have blood work done locally.

I finished the new course of lasix yesterday and saw my local oncologist this morning. My weight is still up and I'm still retaining some fluid. My transplant doctor wanted to be sure that my electrolyte levels weren't low due to all of the excess flushing. Much to my surprise, they were absolutely normal. My local doctor pronounced me to be perfect. The man has a medical degree, so he must know what he's talking about.

For those that are interested, here are the numbers:

WBC: 13.1 k/ul (4.5-10.8) Dr. B. assured me that it's mostly neutrophils thanks to the steroids.

RBC: 3.67 M/ul (4.2-5.4) They've been a little low for months now. Nothing to be worried about.

Hemoglobin: 12.9 g/dl (12.0-16.0)

Platelets: 397 k/ul (150-350)

ALC: 2.3 k/ul (1.3-2.9)

ANC: 9.5 k/ul (1.5-10.0)

ALK PHOS: 37 IU/L (32-92)

AST/SGOT: 14 IU/L (10-42)

ALT/SGPT: 19 IU/L (10-40)

It would appear that my liver is behaving. My liver enzymes are blissfully normal. You have no idea how happy this makes me.

I'll see my transplant doctor in February, and until then, my medical dance card should be empty.

Monday, January 10, 2011

Giving in

Last Thursday, I managed to find a pair of the jeans I last wore while at my heaviest on steroids. At that time I weighed in at 164 lbs. The weight was from a combination of steroid eating and fluid retention. I tried them on and could just barely button them. My current weight is 152 lbs. It's most definitely mostly fluid retention.

My disappointment at the poor fit coupled with my extreme discomfort doing most things compelled me to email my transplant team. I stopped being stubborn and gave in to lasix.

Lasix is a diuretic that can be administered via IV infusion or in pill form. I've only had it as an IV while in the hospital. My experience with it then was that it worked within 15 minutes and that I'd need to urinate every 10 minutes until the drug wore off.

I started taking the lasix pills Friday. They don't work as quickly and the urge to run to the water closet doesn't approach the scale of an all out emergency. However, I was feeling more comfortable in my own skin by the end of the night.

I haven't really discussed it before, but the excessive pressure around my torso made digestion a nightmare. Anything I ate would sit like a stone in my stomach for most of the day. My abdomen would become distended with each subsequent meal. Extreme constipation was my co-pilot.

Saturday, I could eat a meal and feel normal. I didn't have to work as hard to draw breath. Lest anyone become alarmed, I did not have trouble breathing because my lungs were inflamed. The pressure from the extra fluid meant that I had to exert a little more to draw breath. Once the lasix started to work, my breathing became normal.

Sunday morning, I took my pill and noticed that it didn't seem to be working by mid-day. I soon learned why. The pill is about 1/3 the size of a tic-tac and I have diminished feeling in my fingertips. The pill slipped out of my grasp before it made it to my mouth. I found the pill in its pristine whiteness lying on my bed. I'm thankful one of the cats hadn't eaten it. I took a dose a little before 2pm and it didn't begin working until after dinner. Back to feeling bloated.

I also gave in and bought bigger pants. They'll hang in my closet next to the bigger tops after this is all over. This time, I'll keep them around, just in case.

Wednesday, January 5, 2011

Another month, another trip to Houston

To keep things interesting, I had an appointment with my transplant doctor this past Monday. I'm still on steroids, so Dr. K. is keeping a close eye on me. She commented on how my face looked less full. I countered her observation in the negative. Ten minutes into the visit, she began to agree with me.

She noted that my legs are slightly swollen, and my arms are a little more so. She was most concerned with the amount of fluid around my middle. I'm now officially 15 pounds up from my base weight. Dr. K. brought up lasix, which is a diuretic that I've received via IV infusion many times before. This time around, she offered me an oral course spanning 4 to 5 days. I had concerns about the extra work it would create for my kidneys and was told not to worry about it. I still declined. I'm uncomfortable with the extra fluid, but don't feel that the very temporary relief provided by the lasix would be worth taking yet another medication. Dr. K. offered to call the prescription in for me if or when I change my mind. If it gets any worse, I'll follow through.

Dr. K. also wants to recheck my thyroid levels next visit since my waist has become so thick in the last month. Okay.

As for my blood-work, I only have cell counts. The chemistry wasn't available due to the backlog of patients left over from the holiday weekend. Here's what I have:

WBC: 14.4 K/UL (4.0-11.0) Dr. K. suggested that my white count is high due to steroids. I saw my local oncologist 2 weeks ago and my white blood cell count was somewhere around 18 K/UL and Dr. B. speculated that steroids were also the culprit.

RBC: 3.56 M/UL (4.00-5.50) It's low and no one was bothered.

Hemoglobin: 12.0 (12.0-16.0)

Platelets: 259 K/UL (140-440)

ANC: 10.73 K/UL (1.70-7.30) This makes sense since my white blood cell count was high.

ALC: 1.83 K/UL (1.00-4.80)

AEC: 0.00 (0.04-0.40) I'm taking steroids, so the absence of eosinophils isn't a surprise. These are the little beasties responsible for inflammation and GvHD.

I didn't get a frantic call from my nurse later in the day, so I'm going to assume that my chemistry results were passable. I have to return in a month to get rechecked. I've also been given a pass on seeing my local oncologist this month for blood work. My veins are happy.

My steroid dosage has been cut in half. I'll take 8 mg every other day for a month. Dr. K. referred to it as a therapeutic dose. She also looked me in the eye and warned that I would begin to feel terrible and that I should be ready. I am. She assured me that the cushingoid aspect of my features should start to resolve at these lower levels. In layman's terms, she means that my puffiness should start to subside. I know it will, just not as quickly as she expects.

The fluid will come off in its own time. Of course, I'd like for it to dissipate sooner rather than later since it's severely affected my ability to fit into any bottoms I currently own. I can't keep spending my days in pajamas. It's starting to get scandalous and feeding into my reluctance to leave the house. Classes start in less than 2 weeks and I'd like to be able to sit down without the waistband of my pants rolling down from the downward pressure of my muffin top. I know the solution is to by bigger pants, but having just bought bigger tops, I'm reluctant. I'm just being stubborn.

In the mean time, I've been dealing with trying to get a contractor out to look at a leak that has developed around our chimney. The roof on our house was replaced the year that we bought it by the previous owner. From the placement of the water stains in my ceiling and what Chris observed in the attic, it's not the roof or the flashing around the chimney. I suspect it's the 12 year-old masonite siding on the chimney. You can see that it's suffering from age and neglect. It had to be repaired before we bought the house. I'm guessing that it wasn't done correctly.

I got our first estimate today and it took everything in me not to pull out my copy of RS Means and lay it down in front of the contractor to show him that I was familiar with what labor and materials cost. I can throw out estimates fairly accurately and the number I had in my head wasn't close to the quote. When I asked for a better break down, I heard the phrase, "at cost". Hardly.

Two more estimates tomorrow and a no-show today who may or may not try to reschedule. I'm still trying to decide whether or not to casually display some of my construction reference books in the hopes that should any of the other contractors care to treat me like I've never handled a piece of lumber before, they might reconsider.

We'll see.

Saturday, January 1, 2011

My first date with Kai


I think I've been taking steroids for 14 weeks now. You can see how the fluid is collecting in my face, neck, and torso. I also had the pleasure of meeting my nephew, Kai. I may be biased, but he's gorgeous and just a doll.







Sorting it all out

Over the last few weeks, I've been finding it more difficult than usual to update the blog. It's been a combination of things like the holidays and steroids colluding to keep me away. Mainly, I haven't liked any of the topics that have occurred to me.

My steroid weight gain has topped out at 10 pounds over the last two weeks. It's mostly around my midsection and it's making me miserable. I know it's mostly fluid. I know it will resolve once the steroids stop. I know that I am still me.

I'm still bothered. Nothing fits. Nothing. I had to buy new tops about a month after the steroids started for the same reason. I just ordered a slew of tops in the next bigger size. I am uncomfortable in my own skin and it has brought me perilously close to a pity party.

I'm not complaining about feeling fat. Steroid weight isn't like that for me. If you could see me in real life, you'd know what I was talking about. My legs are still the same size as they were in the beginning, if not smaller from deteriorating muscle tone. I look a bit like a scaled down version of Violet Beauregard from the original Charlie and the Chocolate Factory movie starring Gene Wilder, post gum debacle.

It's a matter of looking like the odd man out. I tend to like to blend in with the herd. Especially post cancer. I've managed to distinguish myself enough in the world of weird disorders and treatment. Time for someone else to shine.

The frustration of this all has fed into a general feeling of what's next?

That's not like me and I've worked on snapping out of it. I'm not feeling sorry for myself, and I don't want any one else to. I am putting one foot in front of the other and I am determined to plow through this just like I've done each time before.

I just had to remind myself of why I keep doing this. I get up every day because I want to stick my thumb in the eye of cancer. I write this blog so that others who have been diagnosed know that they aren't alone. Every day that I push forward toward my goals is a win and we all like to win.

Eight days from today, four years ago, I was told that I had leukemia. Two days later, I started treatment in Houston. I think I'll let these two dates pass with no celebration. I'll have made four years and as far as I'm concerned, that's a major win.