2 Week Update

I had a 2 week follow-up with Dr. K. concerning the lung GvHD and as far as she's concerned, things are headed in the right direction. She said my lungs sound better, which is a very good thing.

 I am suffering from side effects from steroids, which is not such a good thing. I have tremors in my extremities, skin thinning, and if I stand for too long, my entire body shakes. The good news in all of this is that I've managed to restrain the ravenous urge to eat everything in sight that comes with high-dose oral steroids. If I can't stand it, I'll have a piece of fruit or a bottle of water. It's a poor substitute for the extra-large deep dish pizza I want to inhale in one sitting, but it will do for now. My skin is so thin you can see my veins and if I'm not careful, a light tap will leave a bruise.

I'm also not sleeping. Steroids wreck your adrenal glands. I've spent the better part of a month existing on 3 to 4 hours of nonconsecutive sleep per night. I'm so jittery during the day that I can't nap. I've been working with both my MDA and my local team to figure it out. Ativan gets me 3 hours of sleep if I'm lucky. My local prescribed 15 mg of restoril. It gave me 3 hours just like the Ativan. He bumped it up to 30 mg and ironically, it gave me 2 hours of sleep before I popped wide awake for the rest of the day. Nice, right? I can't take ambien because it leaves me feeling sick and disoriented the following day. Benadryl left me drowsy, jittery, and awake. ZzzQuil gave me a whopping 4 hours of nonconsecutive sleep.

As a leukemia patient, I used to get a compounded prescription for a nausea medicine called ABH. It contains Ativan, Benadryl, and haldol. Would knock me out every time, so they started giving it to me the first time I had to be on steroids to help with sleep. Chris suggested it to Dr. K., and given that I was on the verge of a psychotic episode due to lack of sleep and out of control mood swings due to steroids, she was willing to try it. I slept for 7 hours after taking one. Dr. K. also wrote a prescription for Lunesta. My insurance company wants everyone to jump through flaming hoops while singing the Star Spangled Banner backward before approving it, so I can't report on its effectiveness since I can't get my hot little hands on it just yet.

Needless to say, my overall mood is improved thanks to a few days of near normal sleep.

I have another appointment next week. It's an annual that had to be deferred since I was in the hospital in July. The following week I'll follow-up on the lung GvHD with Dr. K. and the pulmonary specialist, as well as my endocrinologist who's currently monitoring me for steroid induced diabetes. I've managed to control my diet well enough that it hasn't become an issue. I did become diabetic the last time I was on steroids and so they are being cautious. I'll also see my head and neck surgeon for a check-up on the whole squamous cell carcinoma of the tongue thing. I was supposed the see her the same week I ended up hospitalized and so that 3 month follow up was also deferred.

I'll update as things occur. For now, my breathing continues to improve. I haven't needed supplemental oxygen in almost 2 weeks. I still get tired easily, but it is improving. And people still tell me that I don't look sick. Go figure.

In this skin

In this skin of mine, at a glance, you'd never guess that I'm chronically ill.

Friends, doctors, nurses, and strangers all say the same thing, "You don't look sick."

What does being sick look like?

When the chronic graft versus host disease began to slowly flare up in my lungs back in June, I didn't look any different to friends and coworkers. Unless you knew what to look for. My office is on the second floor of the building and I would take the stairs every day. One day I started panting once I reached the top landing. And then it became a daily occurrence. I couldn't catch my breath to make small talk with passing coworkers, so I'd wave hello and head to my cubicle. People who'd encounter me at the top of the stairs would joke that it looked like I'd just run a sprint.

Of course I hadn't. My lungs were filling with infiltrates and scar tissue caused by graft versus host disease and compounded by Bronchiolitis Oblibertans Organizing Pneumonia (BOOP for short). It's not something that you can see without the aid of a CT scan.

Then I started losing my voice. And then came the constant coughing. Friends at work who know my history began to get worried. I was finally looking sick.

I'd informed my transplant doctor at MD Anderson back in June as soon as I realized something was wrong. She put me back on inhaled steroids hoping that it had been caught early enough to take care of the problem. 2 weeks later and I was getting worse. I could barely speak above a whisper and the coughing started to sound like a goose in distress. My lungs weren't expanding sufficiently.

I had a follow-up at MDA on 7/10/13. Silly me, I thought I'd get a prescription for high-dose steroids like I did the last time lung GvHD struck in 2010 and be on my way. Lucky for me my transplant doctor is at the top of her game and saw what I couldn't. On top of the lung GvHD and BOOP she suspected a tertiary infection in the lungs and had me admitted to the hospital for tests.

She was right to do it and I am grateful. Bacterial pneumonia managed to take advantage of the ripe situation in my lungs and settled right in.

I began high-dose steroids to deal with the GvHD and BOOP. Because the doctors couldn't know what bacteria had taken up residence in my lungs until cultures were grown, they threw several antibiotics into the mix. After 7 days of trying to cultivate growth, the pathologist only managed to get H Influenza to grow. (This is a bacteria and not the virus responsible for causing flu.)

After 3 days in the hospital, I started needing supplemental oxygen most of the time. I couldn't keep my oxygen saturation level above 90 on my own. Breathing treatments began 4 times a day in the hopes of expanding my airways and clearing out the mucous in my lungs making breathing so much harder on top of everything.

By day 7 I was resigned to being in the hospital indefinitely, and that's when my transplant doctor decided to let me go home with a host of equipment.

I currently have 11 tanks of oxygen in my living room. There's a catalytic converter for when I want to save the tanks for when I need to leave the house. There's an enormous tank of emergency oxygen in my bedroom, just in case. I have my very own nebulizer now and do breathing treatments daily.

Chris bought a pulse-oxmeter so we could monitor my levels throughout the day.

I'm also back up to 26 pills a day. Immunosuppressants, oral steroids, anti-virals, anti-fungals, topical steroid creams and lotions, cholesterol meds, a huge host of antibiotics, multiple steroid inhalers, and sleeping pills. Some are for prophylaxis because the steroids and immunnosuppressants leave me open to easily catching infections.

I also need to see my local oncologist weekly to monitor my blood-work. Many of the drugs I'm on are hard on the liver and kidneys and so toxicity can be an issue.

This past Wednesday I had a follow-up at MDA to gauge the efficacy of the regimen I'm on. The crackling sound in my lungs is improving, which is a step in the right direction. My doctor says that I'm slowly improving. I'll take what I can get. I've still needed supplemental oxygen off and on, which is not so great, but I'm working on it.

There are side effects to all of the drugs, the most prominent of which being that I shake uncontrollably from the steroids. That, and I can't sleep for more that 3 or 4 hours at a time without a sleeping pill because of the oral steroids. It makes for interesting days. Also, there's the constant driving need to eat everything in sight. Steroids. My glucose level is up, too, which may mean temporary diabetes due to steroids. It happened the last time and I won't be surprised if it happens again.

I'll go back to MDA to get re-evaluated in 2 weeks and also see the endocrinologist about the whole diabetes thing. If I can stay off supplemental oxygen for that long, my doctor will let me return to work.

In the meantime, I'm laying low and doing my best not to setback recovery. And if you should happen to run into me on one of my rare outings out of the house, remember, I'm doing my best not to look like a sick person. Feel free to ask me how I am, but please don't tell me that I don't look like anything's wrong. Unless you have x-ray vision you'd never guess my lungs look like someone dumped 2 boxes of cotton swabs in each one.

Pneumonia

I'm without my computer, so this will be short. Dr. K. admitted me to the hospital Wednesday after my clinic visit. It was in order to expedite the tests I needed done on my lungs. I'm really lucky that she persuaded me to do it when I balked.

I'm experiencing a resurgence of lung GvHD which is manifesting as bronchial obliterans organizing pneumonia. The pulmonary specialist who scoped my lungs also did a lung wash and found 3 distinct strains of bacteria that didn't belong. They're trying to grow the cultures in order to identify the strains. This means I also have bacterial pneumonia. I cannot recommend it.

I'm getting lots of antibiotics and steroids to treat this. I'm also getting supplemental oxygen because I can't maintain a normal level of oxygen saturation. Breathing treatments started a few days ago and seem to be helping. I can't say when I'll be released from the hospital, but I can say the rounding physicians feel that the prognosis is good.

I'll feel much better when I finally manage to walk to the bathroom, 6 ft away, and back without wanting to pass out.

When it's your lungs

A lot of people believe that once you have a bone marrow transplant, your major health issues will be resolved. No more cancer means no more problems. These people are horribly misinformed.

I'm currently struggling with graft versus host disease of the lungs. Again. Things have been gradually getting worse. I've begun to feel a familiar pressure in my abdomen on the upper right side, just under my rib cage. It's similar to the feeling I had when graft versus host disease began to affect my liver.

I emailed my transplant team about my inability to breathe on Thursday. On Friday, Chris and I began playing phone tag with my various nurses and PAs. My transplant doctor was out of the country. My local oncologist was out of town. The doctor covering for him would be out of the office over the weekend.

Fortunately, my transplant doctor's PA is a champ. Long story short, I narrowly avoided being put on a daily dose of 120mg of prednisone by the doctor covering for my transplant doctor. He's never treated me and so he's not familiar with my history involving steroids. I'm hyper-sensitive. It can be a problem. My PA managed to get through to Dr. K. who will see me when she returns to clinic on Wednesday. I will have tests. Experience tells me that there will be chest x-rays and CT scans. I will probably need lung and liver biopsies. I'm not thrilled by the prospect of 2 more surgeries, but I understand that the specialists need to see what's going on in my body.

I just want to be able to breathe again. Scratch that. I want to be able to walk and talk and breathe without feeling like I've run a marathon after taking 20 steps.

I probably won't be up to blogging on Wednesday, but I will update throughout the day on twitter.

A little more of that

Last Wednesday marked yet another three-month follow-up visit at MD Anderson. This time around I had my patient loyalty card punched in the stemcell clinic. It should have been a routine visit full of all the routine things you get to do post bone marrow transplant. Mostly, it was.

My blood counts were excellent, with nearly everything in the very normal range. 

My breathing, however, is not so good. Ever since my initial diagnosis of GvHD in the lungs, I've had a small amount of trouble breathing. High humidity makes it hard to breathe. Allergies make it hard to breath. Extremes in temperature equal breathing torture. Up until a few weeks ago, it was a small thing that I'd grown used to. Roughly three weeks ago, I noticed that climbing stairs would leave me winded. I thought it had something to do with the humidity. When the breathlessness started occurring on a regular basis after climbing the stairs at work, I realized that the GvHD in my lungs was trying to make a comeback. The very last thing I want is a little more of that.

My lungs are filled with scar tissue from the last time I had GvHD there. It gets better, but it doesn't go away. I had a routine pulmonary function test in March. It was almost normal, which is a very long way from the 50% lung capacity I was lurching around with in 2010.

Dr. K. ordered a PFT for me after I saw her Wednesday. I got the results a few hours later while I was on the road home. Diminished lung function. GvHD. I was told to resume the steroid inhaler I set aside three months ago.

If I'm lucky, the GvHD will respond and I will have shown an improvement by my next visit with Dr. K. in September. The last thing I want to do is go back on high-dose oral steroids. It's likely what will happen, though. 

I'm also displaying signs of chronic GvHD on my hands. All of my fingertips are torn and cracking. No amount of moisturizer helps. 

My next visit to MDA is scheduled for July. Go figure, it's another three-month follow-up. The Head and Neck center own my dance card that day.

Where things stand

Where do I begin? It's been over 4 months since the last post and during that time I've been trying to fly below the radar. My tongue has healed, although it is still numb along the side from which the tumor was removed. I can't taste anything on that side, which makes meals an adventure in blandness and texture. I've been reassured that my ability to taste will return in time.

I contracted an upper respiratory infection which required me to go back on inhaled steroids. For those of you who are new to my blog, I'm prone to GvHD of the lungs. It's horrible and fills my lungs with infiltrates and reduces my ability to breathe. It's taken me over a month to recover from a virus that wouldn't have made much of an impact on me pre-cancer.

I saw my transplant doctor in February and she seemed pleased with my progress. I was on track to being able to space my visits with Dr. K. out to six month intervals last year. Since I presented with cancer number 3 (leukemia, PTLD [lymphoma], and now squamous cell carcinoma for those of you keeping count) last December, my leash has been reeled back in and I will continue to see Dr. K. every 3 months. She will continue to monitor my lungs and I will continue to have pulmonary function tests every few months.

Yesterday, I saw Dr. G., my head and neck oncologist at MDA. She spent a good deal of time looking in my mouth and feeling around for any anomalies. She didn't find anything, which is a very good thing. As a matter of course, I will have to see her every 3 months for the time being. She's being cautious and I am grateful for it.

In September, I'll be celebrating the 5 year anniversary of my second bone marrow transplant. It's significant in the same way that turning 18 is significant to a teenager. It signifies that I will have managed to move past a statistical hurdle and that according to published studies, the chance of a recurrence of leukemia has been minimized. This is the time when people will start throwing around the C word--cured.

I get twitchy when people want to pat me on the back for this milestone. Cured isn't a dirty word, it just comes with a lot of baggage for me. I've had cancer 4 times since 2007. 3 distinct types of cancer. I live with Graft versus Host Disease. I'm more comfortable with the term, "No evidence of residual disease."

5 years out means Chris and I can seriously look into starting a family. We've been discussing several options and once we're able to move forward, I'll write more about the process. This leads me to the final bit of information I learned during my check-up yesterday. While discussing the impact that this latest cancer occurrence has on the possibility of adopting children, Dr. G. disclosed that Chris and I were the first patients to bring it up to her. She explained that my most recent event shouldn't be a problem. In fact, by the time I make it 4 years out from the initial diagnosis of squamous cell carcinoma, my doctors will be on the lookout for a different kind of cancer.

I told Dr. G. that we were in luck because squamous cell carcinoma was that other cancer they were looking for.

Are you getting a sense of why I get a little funny about the C word? Lest you think I'm living under a dark cloud concerning my future, let me assure that I'm not. I don't plan on living my life waiting for the other shoe to drop. I'll deal with things when and if they happen and not waste any time worrying about what might be.

Six weeks later

It's been a little over six weeks since I had the partial glossectomy and I'm still dealing with healing. I have survived to tell you that one of the helpful little chestnuts people kept repeating to me from the very beginning of this newest cancer odyssey does not necessarily hold true. The tongue does not heal as quickly as you would believe. Yes, the tongue is a very vascular rascal. That fact should lead to faster healing.

When it's your tongue post glossectomy, all bets are off. Time stands still and misery becomes a near constant companion. I lived on protein shakes and later, applesauce until I was finally able to manage solid food on Christmas day. There is still a small hole on the side of my tongue and I am constantly aware that something's not quite right with the way my tongue feels in my mouth. The sensation will diminish with time, I'm told. I've also been told that the perpetual tenderness on that side will get better the further away from surgery I get.

I saw the head and neck specialist at MDA last Monday. She's very pleased at how well everything looks. I'm even more pleased to report that the final pathology report showed clean margins. It would appear that the clever surgeons got the bugger.

Some of you might remember that I met with genetic counselors before the surgery. They suspected that there was a very tiny possibility that I could carry the genome for Fanconi's anemia. I don't have any of the obvious physical signs that usually accompany the disorder. The reason they kept circling back to it is that I've had leukemia and squamous cell carcinoma and I'm younger than the demographic that usually present with both things. Don't forget that I also presented with a chromosomal abnormality each time I presented with leukemia. Then there was the PTLD. What I'm getting at is that my chromosomes like to get funky and know how to party.

A special kit was procured in order to test me for this newest possible affliction. Because I've had a cord blood transplant and a bone marrow transplant, the only way an original sample of my DNA could be procured was through a skin punch biopsy. I'll spare you the gory details and just tell you that it did not go well. The nurse opted not to put a stitch in the site--I've had multiple skin punch biopsies in the past and the PA always put a stitch in. Instead, I got steri-strips. They fell off the next day, which wasn't supposed to happen. I ended up seeing the internist that was subbing for my regular doctor 2 days later only to be told that nothing could be done and they should have put a stitch in it. No kidding.

I should find out about the test results in a month. If I do carry the gene, then the doctors will have a better idea of what other cancers to monitor me for. It is a never ending adventure where the rides suck.

Because I'm a glutton for wacky tests, I also had a pulmonary function test immediately after the biopsy. I've been on inhaled steroids for almost 3 years because of GvHD of the lungs. It's become a bit of a woobie for me. In the world of transplant survivors, GvHD of the lungs is one of the scarier developments. I remember all too well those horrible early days when taking 5 steps made me want to pass out.

After 3 years of PFTs, I finally managed to secure a normal result. I should be happy about it. In fact, I'm still a bit skittish about it. The pulmonary specialist's PA told me to discontinue the steroids. I've been off for just under a week and I keep waiting for the first signs of breathlessness. I can't help myself. If I start coughing, or get a respiratory infection, then I have to restart the inhaler immediately and call the specialist. I'll have another PFT in March to see if I'm maintaining this new breathing normal. Fingers are firmly crossed.

So there you have it. Work is keeping me incredibly busy and that is a very wonderful thing. Chris is well and the cats continue to run the show. What more could I ask for?