Friday, April 18, 2014

Holding My Breath

It's been 4 days since I stopped taking steroids. It's been 2 days since I saw my transplant doctor. So far, so good. And now I wait to see if the lung GvHD has been tamed.

It takes 14 days for steroids to leave a person's system. The last time I stopped steroids I managed 12 days of easy breathing.

People tend to think that once the steroids stop, you immediately go back to feeling like yourself. There's one person in my life who insists on telling me that I should feel better because I'm off steroids. I've explained to them how steroids work and what the side effects of being on and off of them are. They keep insisting that I should feel better.

Here's the reality: I have trouble concentrating. I have problems forming complete thoughts some days. I'm tired in a way that only weaning off of steroids can leave you. I've put on 20 pounds since starting steroids last July. My hair has fallen out, grown back in, and fallen out again. I've developed cushingoid features. The muscles in my lower body have deteriorated significantly. I have general muscle weakness. My adrenal glands aren't functioning properly. I shake uncontrollably some days. The list goes on.

Most of these symptoms are temporary.

A check of my cortisol levels revealed that I'm producing next to none. This could mean adrenal insufficiency. My transplant doctor checked in with my endocrinologist regarding my very low levels. The current thought is that I'm too close to having stopped steroids to make a definite decision. I'll go back in a month and have my cortisol level rechecked. In the meantime, I'm supposed to report any side effects related to adrenal insufficiency to my doctor.

I'll be vigilant and I'll continue to go about my life as I usually do. One day at a time.

Sunday, March 23, 2014

A Step to the Left

It's been a bit more than a month since my last entry. I will admit to wanting to post a few musings since the last time I dusted off the keyboard. I mostly haven't because the writing would have been an exercise in ranting against some of the things people post about themselves, in reaction to something I've posted, or unsolicited advice on how to go about my life post-transplant.

I don't think a rant in exchange for a rant is a very good value for the friends who continue to support this blog by reading and reaching out to me.

I saw the 2 specialists most important to my treatment last Monday. Pulmonary had chest X-rays and a PFT waiting for me. The X-rays confirmed that I've developed new scar tissue in my lungs as a result of pneumonia and lung GvHD. The PFT confirmed that I've had a small improvement in my lung capacity. Small. I'm still doing breathing treatments twice a day and I'm still bringing up stuff from my lungs. Remnants from pneumonia.

My pulmonary PA emphasized that I need 30 minutes of cardio every day. I explained that I'm working crazy hours and free time doesn't actually happen until about 8 pm. She told me they didn't care how I managed it and that I could do it in 10 minute increments throughout the day. Talk about being ready for me. The working theory is that I've developed steroid weakness to the point that my diaphragm and lungs have become lazy. The cardio is to help with my stamina. The team wants me off steroids.

My transplant doctor saw me as well.  Both doctors were hoping for more progress. After nearly a year of this, I'll take whatever improvement I can get. Dr. K. elected to step down my steroid dosage to 10 mg every other day. After 2 weeks, I'll go down to 5 mg every other day. Then I stop.

If I run into trouble between now and then, the pulmonary team has asked that I contact them first. They see this more frequently and have considered alternative ways of treating me. Long story short: every one wants me off of steroids. The long term affects can be debilitating.

I've been warned to watch out for extreme fatigue or extreme tiredness. There is a very real concern that my adrenal glands have shut down. If so, I'll need to reach out for treatment.

As things happen, I'll try to post.

Friday, February 14, 2014

This and That

Life has been a cycle of constant motion for the last few months. Multiple visits to MD Anderson balanced with work deadlines have left me feeling several shades of tired. To compound everything, Chris was sick with a cold last week. This week, I'm sick with his cold. I'll cover how it's being dealt with a little further down.

First things first, I saw my endocrinologist last week. He noted that I am displaying cushingoid features more prominently than when he last saw me. My face is taking on that distinctive moon pie shape long-term steroid users tend to get. I have a hump of fat across my neck and shoulders. You read that correctly. A hump. My doctor verified its existence. It does happen when you've been on high-dose steroids long enough and particularly when you're steroid-sensitive. My legs are the skinniest they've ever been. Unfortunately, steroids help the body to redistribute weight. For me, I get all of it solidly around my middle. All the way around. It's like having a fatty tire permanently fixed around your midsection.

All things considered, Dr. J. gave me an A+. My thyroid levels are being controlled by daily medication. I'm still managing to take the stairs at work, thereby fighting against steroid weakness and muscle atrophy in my lower body. I'll see Dr. J. again in a few weeks just to be sure things continue going well. I'll also have another bone density scan to see what damage being on steroids for so long has done to my bones.

This week, I saw my transplant doctor. While there, I had Chris on speaker phone so he could participate in the visit. He confessed to being sick in order to alert the team to the possibility that I'd been exposed. To his credit, when he realized that he was coming down with something, he called his doctor, who in turn prescribed something to help Chris along.

My breathing remains difficult. I feel like I'm improving, but I'm nowhere near the point in recovery that I was experiencing before weaning off of steroids all together in December. During the visit, it was noted that my lungs continue to sound clear. Since things aren't getting worse and I feel like I'm moving forward, the decision was made to step the steroids down again. I'm now taking 20 mg of prednisone every other day. In two weeks, I'll step down to 15 mg every other day. The team is giving me a little break and allowing me to return in a month rather than maintain the 2 week schedule I've been on. I couldn't be happier. The drive was becoming a grind.

As for the cold, I realized that the little monster had taken hold yesterday. My head was congested and my nose was constantly running. My transplant team advised me to get in touch just in case Chris had passed along his cooties, and I definitely reached out. I'm on a 7 day course of Avantin in addition to all of the other antibiotics I already take as prophylaxis while on steroids and tacrolimus. There's nothing more that I would love to do than curl up on the couch and sleep for three days. Unfortunately, the steroids keep me in a perpetual state of wakefulness, so no naps here. I'll settle for a long weekend of cheesy movies wrapped up on the couch while the cats take turns demanding treats and attention.

Wednesday, January 29, 2014

Another 2 weeks

I saw my transplant doctor at MDA on Monday and all went as expected. My lungs sounded clear. I'm still on steroids and dealing with the side effects. Dr. K. wants to slow the steroid taper down to give the drug a better chance of shutting down the GvHD in my lungs. So now I'm taking 30 mg of prednisone every other day and will return to Houston in 2 weeks for another checkup.

Next week is my standing appointment with Dr. J., my endocrinologist. I don't think there will be any surprises.

Sunday, January 19, 2014

Learning to live with an unwanted guest

GvHD is something that I've resigned myself to living with. It affects one system or another, or multiple systems when it's feeling really frisky, on any given day. It's the thing that keeps leukemia at bay. It's also a thing that can kill me if left unchecked.

Since July of 2013, I've been on steroids for GvHD of the lungs. I started at 60 mg of prednisone per day and slowly tapered to nothing as of December 13, 2013. Things seemed good. I was taking the stairs at work, per my doctor's orders and working on building up lung volume. The most recent pulmonary function test prior to stopping steroids showed my lung volume up from 55% to 67%. That's not too shabby. Of course, that didn't mean I wasn't running out of breath at the top of the stairs or contemplating taking up running any time soon. It meant I wasn't struggling to breathe on a regular basis. Humid days still gave me trouble, but not the gasping, fish out of water feeling that sometimes overtook me on a really bad day.

I began feeling short of breath again on December 26, 2013. Nothing terrifying, just a slight inability to catch my breath doing the most mundane thing. Having been down this road twice before--and having learned my lesson after contracting pneumonia from being stubborn and stupid, I recognized this for what it was. The GvHD in my lungs hadn't resolved.

It takes 14 days for steroids to leave your body. Prior to this episode I'd been on a two week taper interval. I'd been taking 5 mg of prednisone per day for 14 days before I finally stopped. December 26 marked 13 days from my last dose. Close enough.

My transplant doctor saw me on 12/30. She looked me over and listened to my lungs. Much to her surprise, my lungs sounded perfect. What can I say? I'm her outlier. She started me on 30 mg of prednisone and had me come back 2 weeks later. I saw the pulmonary specialist, my transplant doctor, had a CT scan, pulmonary function test (PFT), and a 6 minute walk test.

I confounded both doctors once again. The results of my 6 minute walk test fell firmly in the middle range of normal for a healthy person. My oxygen saturation never fell below 98%. My CT scan showed some slight improvement in the areas of ground-glass opacity (pneumonia) over the CT scan results from 12/4/13. My lungs sound clear. My lung volume has fallen from 67% to 57% in less than a month. The pulmonary specialist can't explain it. She wants me to repeat a PFT in 6 to 8 weeks. She also asked me to pursue more vigorous exercise in addition to the breathing treatments and steroids and stair taking. She told me of all her patients, I'm the one most vigorously pushing to get better. You better believe it.

So now I'm walking on the treadmill at a 10% incline for at least 20 minutes a day. I try to do more, but some days don't have enough hours. I'm also having problems with severe foot cramping, which does interfere with walking on occasion. Steroids.  Can't do a thing about it.

There are some other steroid related issues that you'll be familiar with from past blog posts. Severe mood swings. Insomnia. Constant shaking. Weight gain. Let's just say I'm super fun to be around on any given day.

The good news is that my team wants a quick taper. The bad news is that they're worried about permanent adrenal atrophy due to steroids. Yay. I'm currently alternating 30 mg of prednisone with 15 mg every other day. We'll see what the doctors want to do when I see them next at the end of the month.

I'm also scheduled to see my endocrinologist in February. He's got a fabulous sense of humor, so I can't wait to see what his take is on all of this.

I continue to stay busy at work and the cats and Chris are on top of things, so no worries there. My hair is slowly starting to fill in. More salt than pepper these days. You can still see my scalp, but it's not quite as obvious and people don't stare as much. I do realize that it will fall out again at the end of this and that's okay with me, so long as I'm still breathing.

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.

Monday, November 18, 2013

Sorry for the delay

Sorry for the delay everyone.  I promise Part 2 is on the way.  I have recently started a new job and lots of things are in flux at the moment.