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Where things stand

Posted Apr 16 2013 8:36pm
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.



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