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?

Recuperation

I need to admit to a bit of foolishness before I do anything else. I fully expected to be back at work on Monday. In fact, I planned on it. How hard could it be to recover from having part of your tongue taken out?

I survived a cord blood transplant, PTLD, a bone marrow transplant, and multiple bouts of graft versus host disease. This was supposed to be a walk in the park comparatively speaking. 

Turns out a partial glossectomy hurts more than you'd imagine. I spent all of Thursday trying to recover from the anesthesia that was administered to me for the procedure. My kind surgeons prescribed hydrocodone in liquid form which takes the edge off of the pain and puts me to sleep. They also prescribed a viscous lidocaine "swish" which is the consistency of partially set gelatin and next to impossible to actually swish around in my mouth with an open wound. I'm supposed to use it to coat my tongue before eating. Since I still can't eat, it's not really a problem.

The combination of not being able to eat and being high on painkillers means I'm out of commission for the next week. When I'm feeling more human, I'll write a bit more about this newest experience with cancer. Until then, know that I'm mending, the cats are keeping me company, and Chris is doing an excellent job of making sure that I take it easy and am behaving.

Recovery

Good news. Ann is out of surgery & Dr. G is very confident she got all the cancer. She characterized it to me as small and less than 2mm below the surface if Ann's tongue. Basically, it was just the remnants of what the punch biopsy from a few weeks ago didn't get.

Ann is recovering from anesthesia and although she's still groggy, she's moving in the right direction. We might not have to stay in Houston tonight.







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