An Abundance of Caution

When I contacted my local oncologist 2 weeks ago, it was out of an abundance of caution.

When he prescribed antibiotics it was out of an abundance of caution.

When I returned to see my doctor after a week, it was out of compliance. He wanted to see how I'd faired on antibiotics. My throat was no longer red, but I still had small lymph nodes in my neck that were palpable.

For the record: I never had a sore throat. No fever or  cough. Had my doctor not told me that the right side of my throat was red, I never would have known anything was amiss there.

Dr. B. sent me straight in for a CT scan with IV contrast.

The results came in the following day. Inconclusive. Multiple, small nodes were present on the right side of my neck. My doctor scheduled a biopsy for Friday.

The radiologist performing the biopsy had a few problems getting samples from my nodes. The needle kept getting lost on the ultrasound screen, so he had to try a variety of larger gauges. The node he was after was 2 cm down in my neck, next to my carotid artery. The needles kept bouncing off of the node and sliding sideways.

This procedure is performed with a little lidocaine injected near the biopsy site. It's not the most comfortable experience.

After several attempts, the doctor managed to get some samples. I should know the results by midweek.

In the midst of all of this, I contacted my transplant team at MD Anderson. They've scheduled me for a CT scan on Monday. I'll see my transplant doctor a few hours later. It's a matter of caution. No one is saying it's cancer. Until I've been seen by all the doctors who want to see me, I won't know what we're dealing with.

At this point, it may be a mystery infection that I can't shake, or it could be squamous cell carcinoma. We don't know.

What's new

Last week, my neck started to feel sore on one side. Of course it was the side that presented with swollen lymph nodes before each diagnosis of blood cancer. I didn't feel sick. I wasn't running fever. Besides my normal daily issue with allergies, and adrenal insufficiency not withstanding, I felt ok. When I pressed on my neck, I could feel a swollen lymph node.

I called my local oncologist that morning. He saw me the same day. Dr. B. confirmed that I had swollen lymph nodes on the right side of my neck. The difference between this visit and my very first encounter with Dr. B. was that this set of swollen lymph nodes were tender and my blood work was in line with my blood work from 2 weeks earlier.

After a thorough examination, he told me that my throat was red on the same side as the tender lymph nodes. He prescribed a 10 day course of antibiotics. I'm on day 5 and the lymph nodes are smaller. I have a follow-up appointment next week.

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.

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.

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.

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.

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.