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.

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.

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.

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.

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.

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.

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.