Sunday, December 8, 2013

The Good, the bad, and the balding

I'm going to be honest, I've been avoiding blogging for the last few months for a number of reasons.

To begin with, I've been working the kind of hours that would make you, gentle reader, fuss at me with ferocity. It is a very busy time of year in my industry and my work ethic refuses to allow me to leave coworkers in the lurch. I'm not being forced to work the hours that I'm working by my bosses. I'm working the extra hours from the comfort of my home, through a virtual desktop which is much nicer than being chained to a desk, lest you get the wrong idea, and doing it of my own volition. There are deadlines to be met and I don't want to be the one holding things up.

Since my steroid taper has hit a certain level, I have been experiencing a constant state of fatigue. Not cancer fatigue, or chemo fatigue. The kind of fatigue I'm living through is related to the fact that my adrenal glands went dormant shortly after I went on high-dose steroids in July. The steroids were synthetically producing the hormones that the adrenal glands would have been, and so those sweet glands went into hibernation. Then they got lazy and stopped doing anything altogether. Once I tapered down to about 15 mg of prednisone per day, I noticed that my hair was thinning and that I was beginning to put on weight.

The last time I was on high-dose steroids for GvHD of the liver and lungs, my face went cushingoid (think moon pie) and my weight sky-rocketed 64 pounds in a very short period of time. This time, no puffy face and my weight remained stable until the prednisone slowly tapered from 60 mg per day to 15mg daily. It's like a switch went off. By the time my taper reached 10 mg per day, I managed to gain 17 pounds and most of my hair fell out. This is because the steroids aren't producing enough hormones to sustain what my body needs and my adrenal glands are still dormant. I look like I'm going through chemo again. In fact, several people have approached me with worry over whether the chemo is working. I still haven't figured out how to distill the answer as to why I appear as I do into a single sentence. I'm not going through chemo. My adrenal glands are being giant turds.

Now let me work my way back from my most recent visit to MDA.

Last week, I had a CT scan of my chest to get a better understanding of why the GvHD in my lungs hasn't resolved to a degree that makes the pulmonary specialist and my transplant doctor happy. I also had another pulmonary function test (PFT). The last 3 PFTs showed my lung capacity at 55%. That's not good. It should have been improving, even if only by a very little each time. No dice. When I saw my transplant doctor the week before this, she remarked that we'd be doing a lung biopsy if there wasn't significant improvement. Her thinking was that there may have been something other than GvHD of the lungs involved. Imagine my delight at the thought of getting to live through another lung biopsy. They are not fun and you cough your way through the entire event, even though you're under anesthesia. You cough so much, that you often wake yourself up during the event, which is why the anesthesiologist is on standby with more sleepy-time juice.

I got to see my most recent CT scan next to the one taken in July, while I was in the hospital with lung GvHD and pneumonia. There is improvement. You can still see areas of what are known as ground-glass opacity in my lungs. This refers to areas where pneumonia is still present. It's not as bad as it was, but there's still pneumonia in both lungs. There are also still infiltrates, and I am not surprised given my inability to breathe.

Before I go any further, I should mention that my transplant doctor instructed me to start taking the stairs up to my second floor office at work. Now that Chris and I work for the same company, he makes sure that I'm doing it. I'm out of breath by the time I reach the second floor landing, but I don't need my rescue inhaler anymore. I should also probably admit to bumping up my breathing treatments to twice a day.

When I was first given the nebulizer, I was instructed to have treatments twice a day. I did while I was at home recuperating. Once I went back to work, it became impossible and I was given permission to cut back to once a day. After my third PFT came back unchanged, I rearranged my daily schedule so that I could bump back up to 2 a day. Don't ask me how, but every day is a pain in the butt as a result of it.

No complaints, and here's why: my latest PFT showed that my lung capacity is up to 67%. This is nowhere near normal. A healthy person's capacity falls somewhere between 85-100%. I will never ever reach 85% again in my lifetime. Too much scar tissue in my lungs. I'm aiming for as high as I can get.

I'm hoping that once my transplant doctor gets the results, the lung biopsy falls off the table. As for my pulmonary team, they told me to keep doing what I'm doing and they'll see me in 3 months. Big smiley face there.

Here's the bit that I haven't really wanted to write about. 3 days before my birthday in October, Chris and I met with the reproductive endocrinologist recently hired by MDA. She specializes in cancer patients and their fertility. I have had my fertility tested twice before. After my first transplant, I was still able to produce eggs. After my second transplant, the tests proved inconclusive. It has been the very worst emotional roller coaster you could possibly imagine. Having had cancer 4 times, not to mention 3 different varieties of cancer, was nothing compared to this emotionally.

I'd had a special blood test done the month before. It takes about 3 weeks to process and has to be sent off for interpretation. I cheated before the meeting and looked up the results. The protein they were looking for was immeasurable in my sample. I knew what this meant. The day of the meeting, I also had another transvaginal ultrasound. It took close to 20 minutes for the technician to locate my right ovary. Can you see where all this is headed?

Upon meeting with the very kind doctor, I was told that there was not a single egg follicle left in either ovary. I cannot have children naturally. She did reassure me that I could carry a pregnancy using a donor egg fertilized by Chris. First, I have to kick the lung GvHD to the curb and get off of all of the drugs working to suppress my out of control immune system. This won't happen overnight. At best, maybe sometime late next year we can begin investigating options. Also, Louisiana doesn't have a donor egg program, so I would have to go to Houston to have it done. I've been advised to shop around for fertility clinics since prices and practices vary widely. We've also looked into private and public adoption. The cost of IVF using a donor egg runs roughly the same as private adoption. And trust me when I say donor eggs are not free.

We have time to make the decisions that need to be made. In the meantime, I'm very happy with the reproductive endocrinologist and the game plan she will have in place once I make a decision.

So there you have it. Chris still owes you patient readers part 2 of our meeting with sweet Dana, my donor, and Hung, her husband. He's been busy getting acclimated to his new job, so you may need to prompt him through the comments section.

I'm tired, because of my slowly waking adrenal glands, and consumed with doing everything I can to stay awake during the day. I know there will come a point sometime next year when this is behind me and I get to move on to the next portion of my life when I will forget the harder days and look forward to posting more about the things I now welcome as normal.

6 comments:

Thandi said...

Aww man, can't imagine the emotion regarding the infertility aspect :-( I really hope next year will bring something positive and that you manage to one day become parent without having to 'rob a bank' to get there. Wishing you strength and energy...

Diana said...

What a roller coaster ride... Hope your condition improves to the level where a pregnancy is safe. Wish you the joy of better health and motherhood (if safely achievable).

(I came here through Twitter. I've read your blog before, but never posted a reaction).

PJ said...

Thanks, Ann. Once again you've inspired me to get through a day filled with gvh-related appts. and a big needle.

Jody said...

You are my role model. You have more reason to complain than anyone I know yet it is not your way, it is not how you go about things. Thank you for showing us what dignity and courage really look like, up close and personal.

Love,
Jody

Anonymous said...

Oh Ann, I know many people who have battled infertility for various reasons. It just plain sucks. It's long and hard and heart-wrenching. It's not effing fair. I will tell you that every one of those people is now a parent or will be in 2014. It's a process to endure. Nothing worse than what you've been through already but you get a great prize at the end.
-Caroline

Ronni Gordon said...

So sorry you are going through all of this. You are very brave. It is good that you have a supportive endocrinologist to help you make a plan. One way or another, you'll be parents, and great ones too!