Well, hullo there!  How are ya?

Not too much has changed since I last wrote, although I did rescue another mouse.  I had another talking-to with Bella, but she just turns around so her butt is facing me.  Cats…they just don’t have the same respect for humans that dogs do!  I still love ‘em though.

Instead of writing another of my amazing, one-of-a-kind posts tonight, I’m just going to copy what I wrote on the questionnaire I received from Seattle today.  Every year, Long-Term Follow-Up sends out questionnaires to find out how patients are feeling physically and emotionally.  There are lots of “yes or no” questions regarding physical/emotional symptoms, requests for prescription updates and consulting doctors’ information, as well as a place for comments.  The “comments” section is what I’m copying and pasting for you tonight:

“Although I feel any worries I had before doing the questionnaire are diminished a bit (considering the types of question asked and the other possible problems I could have), I still feel anxious.  I am having a bone marrow biopsy next week at my request.  I don’t necessarily feel my leukemia’s back, but I worry when I feel more tired, and when I can sense a pulse in my head.  I have uncomfortable head/neck aches (for the last 2or 3 weeks), and being relatively isolated leaves me feeling antsy.  Because I’m not working, I have a lot of time to think and worry.  I’m able to distract myself, but to be honest, I feel fairly discouraged right now.

After re-reading what I wrote above, I realized it made me sound as if I were sitting in a chair, doing nothing and feeling sad.  That is far from the truth.  I spend a lot of time outside, playing with my dogs and helping my neighbors with theirs.  I walk, I recently started cycling, I work on projects around the house.  I read, spend time with friends and family, and I dance (not formally, just around the house! ).  I keep a blog about my cancer experience, and I’m working on an article to submit to a local magazine.

I try and push through pain from the head/neck aches, and I’m always thinking of ways to keep up a positive attitude.  All in all, I’m doing very well, but I also wanted to express my worries.  They come and go, and I guess lately they seem more nagging, which is why I wrote about feeling discouraged.  I keep repeating this affirmation:  ‘I will recover fully, I will stay in remission, and I will live a normal life.’  With the help of the SCCA, my local MD team, friends and family, I do believe that is true.”

Included with the questionnaire was a collection of comments from patients last year.  Some were positive, some quite negative.  I read a lot of them (but not all–there were a lot!!!).  Several comments centered around feeling tired and achey, apparently a common bond between both new transplant patients and those many years out.  That made me feel more normal, but I don’t want to feel this way years from now!  Still, I felt relieved to read this comment:  “It takes time, a lot of time, before you get past the fatigue and other symptoms and feel somewhat normal.”

Not surprisingly, I concentrated on the positive remarks.  There were many notes from patients 20+ years out!  That in and of itself is encouraging!  There was someone who’s run six marathons since the transplant, someone else who cycles 110 miles, runs 8 miles, rows 18 kilometers, and does yoga 2-3 hours A WEEK!!!  There were funny comments, like the patient who tells friends it’s good he/she was “highly intelligent before all that chemo, because now [he/she] is just a little below average”.

The negative ones seemed to focus on the quality of life post-transplant.  One person termed it being an “existor” rather than a “survivor”.  Another patient wrote that “the cure is worse than the disease…if [his/her] AML were to return, [he/she] would be at peace with death and a quick one at that.”  This was written five years after his/her transplant.

Many patients struggled with the question of whether any aches/pains were caused by aging or residual effects of the transplant.  That makes sense…I guess from now on, I’ll always wonder what causes changes in my body.  There were eleven pages of comments, and I plan on saving them for when I need a pick-me-up (you can bet I’ll be staying away from “The Worst of Times…” section)!! 

Filling out the questionnaire made it clear to me that I’m doing spectacularly well because I could answer “no” to questions like, “Have you had a lung biopsy?”, “Have you been diagnosed with a skin cancer or any other type of malignancy?”, “Have you had an organ transplant (kidney, lung, liver, heart, others)?”, “Have you had surgery to replace a joint?”, “Have you been diagnosed with a cataract?”, “Have you had any seizures, fits or convulsions?”.  Do I feel like myself?  No.  But judging by the questions in the form, I think I’m doing quite well considering.

Also, they sent some long-term follow-up recommendations, and the first one talks about how transplant patients are at an increased risk of cancer, specifically cancer of the skin, mouth, breast, thyroid gland and brain.  My nurse practitioner didn’t mention those when I asked her the other week…I knew there were other specific cancers I would be at risk for other than blood cancers.  Not that I’m happy about that, but I am happy that I was right!

Even though I probably shouldn’t be copying all these quotes into my blog, I found them helpful so I wanted to share them with you…don’t tell the SCCA I did this!  :)  I’ll end with their “final thought” because it is beautifully written and nineteen and a half years from now, I hope to reflect on my life the way this patient did:

“Twenty years ago I was in my twenties, scared and uncertain about the future, not knowing if I was going to live or die.  The transplant was my last ray of hope and it saved my life…What I would have missed:  finding the love of my life and celebrating our 15th anniversary (he fell in love with me when I was still hairless).  I would have missed hiking in the Sierras and Idaho wilderness, skiing at Squaw, Alta and Alpine, sharing companionship with 3 great canines, canoeing in the Oregon lakes, and a road trip from California to Canada.  I would have missed becoming an Aunt, now a great Aunt.  I would have missed attending nursing school shortly after my transplant, becoming a nurse to work with AIDS patients, cancer patients and the elderly.  I would have missed chocolate, the song of the sparrow in the spring, the rainbow at the end of the rainstorm.  I would have missed my mother and father growing older, the wisdom of great Aunts, and hugs from old friends.  I would have missed my sisters all becoming mothers.  I would have missed the sweetness of my friend’s viola in Mozart.  I would have missed being part of others’ lives, however small.  Thank you for giving me back a wonderful life.  I would not have changed anything.”

When I write mine in nineteen and a half years :), I hope to include how I traveled the globe, fell in love, started a family, participated in multiple Team in Training events, learned another language and some new songs for the piano, filled up my recipe box, and contributed to society with a wonderful career (hmmm…I wonder what that will be?!!!).  I would like to write about how I planted a garden, landscaped my home, cooked like a pro, and went to at least one Yankees game a year (in New York, that is).  I will write about all the celebrations I enjoyed with family and friends, and all the hours I spent playing with my dogs.  Finally, I will write about how I thank Laura every day (mentally, that is…you don’t need me to call you and say “thank you” every single day!). 

Oh, and one more thing!  Now that I’ve tried those delicious cupcakes the cupcakeries (is that a word?) sell for $2.75 each, I would like to write about how I savored at least two of them a year.  And rhubarb pie!  And spinach and artichoke dip!  And the occasional blizzard from Dairy Queen!  OK, I better stop…I could go on and on.  ;)  You get the idea.

I hope you’re all doing well…just a couple photos for you tonight.

Love ya,
Julie