More Milestones

It's been another period of one year milestones, reflecting about where I was and how I was feeling one year ago.  Saturday I went to the Amyloidosis Support Group meeting at Ohio State.  Because there are so few Amyloidosis patients, this meeting covers Ohio and Pennsylvania and is held twice each year.  Last year, fortunately, the meeting was held about 2 weeks after my diagnosis.  I met Sandy during that meeting, a wonderful woman who gave me hope that I could have a normal life with this disease.  Her words of encouragement kept me going through some dark days during and after the transplant.  Sandy and her husband were at the meeting and it was great to see her again and tell her how much her encouragement meant to me.

This period of time between my diagnosis and discharge from the hospital was such a blur.  I was emotionally reeling and trying to mentally process so much that there are many things that happened that I've simply forgotten.  Sandy reminded me that at last year's meeting, Dr. Efebera said about me, "Don't let her appearance fool you.  She looks strong and healthy but she is very sick."  Maybe I blocked that out because I didn't want to accept her assessment.

Last year, I met someone who had Multiple Myeloma and Amyloidosis who told me that he didn't go to the Amyloidosis Support Group meetings because he found them too depressing, that people who attended those meetings didn't seem to have much hope.  He found those that attended the Multiple Myeloma meetings to be much more hopeful.  I decided when he told me that to continue to attend the Amyloidosis meetings to make sure there would be at least one voice of hope in the room.  I remember how much Sandy's message of hope meant to me and I plan to make sure I can share that message of hope with those who may come after me.

Yesterday was Claire's first Lacrosse scrimmage of the season.  She and I have talked several times over the last few weeks about the fact that I have never seen her play Lacrosse in high school.  It seems surreal that I missed an entire season.  She started playing organized sports at age 4 and has played continuously since then. Until last year, I'd probably missed fewer than a dozen games and last year I missed an entire season.

I love taking pictures at her sporting events and have done the year end photo video for her Field Hockey team the last two years.  One of the VPs of the booster club called me to ask if I'd be willing (and able) to take pictures of the lacrosse team this year.  I said, "Of course" not just because I want to help but because it will feel more like normal.  It felt great to be down on the sidelines taking pictures yesterday.  The temperature was in the mid-60s, the sun was shining and I was so thankful to be healthy enough to do it.  Here's a link to the photos....not too bad if I do say so myself. https://plus.google.com/photos/102055039637995406761/albums/5990062683688395537?authkey=CMT7uMar85Dd7gE

Alan and I are planning on taking a weekend ski trip to New York the first weekend of spring break.  Yes, I went skiing at Steamboat for a week last year over spring break but was so weak and I felt so bad it was a real struggle.  Looking back on the trip, I probably shouldn't have gone but I didn't know if I'd ever have the chance to ski with the family again and I was determined not to miss the opportunity.  I was proud that I was able to ski each morning we were out there but it was a real struggle.  I tried to keep up a brave appearance but was really scared and suffering.  I knew things were bad when I would eat a half of a peanut butter sandwich for lunch as if I were a priest distributing communion to myself--rip off one small piece and chew it over a few minutes.  Dinner was also a choice between nourishment and pain.  I knew things were bad for me when I didn't have the energy to ski down the last day.  I'm ashamed to admit I took the gondola down but I knew I didn't have the strength to ski down and was afraid if I tried, I'd end up getting hurt.

Alan will be gone over Mothers Day weekend this year which is the first anniversary of my discharge from the hospital.  But, I'm glad he'll be gone, not because I don't want him around but because he'll be riding the 200-mile Tour of the Scioto River Valley bike ride.  He's done this ride several times since we moved up here and it feels very normal to know that's what he'll be doingh...not at home with me cajoling me to do my physical therapy and installing the shower hand rail and bench I needed when I first arrived home.

I'm so thankful that I can enjoy this normal that's pretty close to the old normal.  How different things look this year.