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.


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.


K Blue said...

Ann, my heart hurts for you. I have no words to take away the pain, but I am thankful that you have some amazing friends to support you through this. You are an incredible woman, and I am really grateful for you and the inspiration that you are. Millions of hugs to you.

lisa adams said...

I'm so sorry for this recent pain and anguish. There are no words to convey my sadness for you.

stinkerbelle said...

I love you Ann. I've wrapped my heart around you and am sending you strength.

Marsi White said...

Ann, I am sorry to hear of your struggle. You have so much to give that you shine. I know you will continue to do so, in the same special way that makes you Ann.

PJ said...

Thanks for sharing this, Ann. It might help others in the same situation. Keep being you.

Nancy said...

As you described your heart breaking, my heart broke for you and Chris. You are a strong women as anyone can plainly see. Ann, you have survived so much and have a wonderful loving husband. Enjoy each other as you are a blessing to one another. You are also blessed with so many supportive loving friends. I wish I could take your pain away....

You are an inspiration to so many and have inspired me to see a dermatologist among other things. Hope your stitch feels better soon and hope the tests come back clean. Stay strong and lean on your friends and that great hubby of yours! Love you lots. Call me anytime!

e said...

I know how you feel. I'm in the process of having another lot of tests because I started bleeding again. I've accepted I'm menopausal after cancer treatment, but everytime I bleed (from HRT) the doctor gets my hopes up. I'm happy to be alive and I was fortunate enough to have had a child before I got sick, but it's still devastating, so what you are going through must be so much more painful than what I go through. You'd think surviving death would be enough. I've closed the door so many times, I hope after this round of confirmation tests, I can just accept it and move on.

e said...

and what is hard if you always planned on having a child/children, is when your friends are pregnant. I was so taken aback by how sad I got when friends became pregnant with their second or third child. I think it's because I'm still pissed off and frustrated by the fact I even got cancer in the first place. Sure, happy to be alive, survived the odds etc...but I was menstruating through treatment and it feels as if I've been chemical bombed and the eggs /follicles were little people. Maybe I'm being way too dramatic. But it's difficult trying to explain this to people, especially because I have my one child and I'm alive. But I'm still a bit traumatized by my decision to not even consider fertility saving procedures at the time. I turned down consultations with specialists...but I know there would have been no time and being alive was preferable to harvesting some eggs that would probably be sitting on ice, and me dead. My shrink appointments are mainly about this now that I feel more confident about having survived cancer.
What helps is that I hang out with people who are in a similar predicament. I've become good friends with a woman who also has fertility issues. It really helps to share and be able to say, "you know I feel like such a bitch that I wasn't able to be over joyed by my friends pregnancy" or confess that I've been avoiding some people because I'm not okay with my predicament yet and I don't like being reminded. I'm just shifting my expectations of what I thought life would be like...I think when I feel better than I do now (am still suffering some nasty side effects)...I'll revisit this again. Maybe I could do egg donor..but I'm Asian, so not many Asian eggs.

Jody said...

My dear friend,
I am so sorry for this loss and am sending all the comfort I possibly can. Love to you and Chris,

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