Tuesday, April 16, 2013

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.


Jeannette said...

Ann, that must be an odd feeling to not taste on one side of your tongue. Once when I came home from the dentist I was unable to taste anything for the whole day. It made eating very strange. Having no flavor in my mouth made it difficult to salivate for the food, and the food was just texture only. A very strange sensation.

I wish you all luck in the adventures of starting a family. You two would make terrific parents!

-Jeannette Hill

Nancy said...

Having a little trouble sending this comment..

Ann, I'm so glad you are clear of the C word x 3. Great job and great post. Keep up the good work.

I agree with your outlook, esp after what we've been through.... I'll deal with things when and if they happen and not waste time worrying about the worst case scenario...

You and Chris would make fantastic parents. I wish you well as you enter this new phase of your lives.

Five years in September is really something to celebrate. You should come to California for your 5th birthday! Or if you want to come in October, the A3M dinner event is being held on October 3rd. It would be our honor to have you and Chris there as our guests. Think about it and let me know how i can help make this happen!!! love, n

PJ said...

Thanks for the update. It sounds like we're in similar places regarding infections and the general backwash of complications and secondary "events." Stay strong. I know you will.

Anonymous said...


You and PJ are two people I continue to follow whenever information is printed on-line.
Both of you are survivors who understand how to articulate your story, which helps all others who follow.

Know that you both are always in my thoughts (not an exaggeration) as your struggles--and your lives--continue.

May your quest for a family soon be fulfilled. What great parents you and Chris will make.

(Carrie on LLS site)

Kim Henderson said...

I was just telling some people today...if you live in the past then you can't be in the present. I imagine it can be hard to live life normally after what you have been thru, but it's good to hear that you and Chris are trying to do so. Some may call it a new normal...it is what it is...Thank you for sharing your progress!

Paul Blais said...

Ann, Thank you for sharing your story. It means so much to those of us that have been dragged into this fight. I have been in this battle since mid February (http://paulblais.blogspot.com/2013/02/the-next-thing.html). After two surgeries the doc thought all was going well. Then we discovered so much more cancer (http://paulblais.blogspot.com/2013/04/sunny-and-dark.html). It is a scary battle. Reading your process is encouraging and makes a difference. With all my heart, thank you.

Dianne said...

Dear Ann,

I always look forward to your updates and was a little concerned when it took so long, however, was hoping you were just enjoying your life! As you may recall my daughter had ALL and will celebrate her 5th birthday July 23rd. She and her husband adopted a little girl from Poland in November. Poland knew about her medical condition and did not have a problem with it. of course both of them had to have medical checkups and she had letters from her Oncologist. They had been to China and was thinging of adopting from there but China would not adopt to anyone who had had cancer. They used St. Mary's adoption agency from North Carolina and they were were wonderful. Expensive but our little Hadley Agata was worth it.