Just a quick note that a year ago today- June 12th, 2008, Chris had her second day of stem cell collection where she gave up the last of her approx. 10 million stem cells before they would be wiped out by the melphalan. It is tough to read the old posts but amazing to see the progress. Chris continues to feel very good and has gone on notice that no matter what, she is "going to really enjoy this summer", having lost hers last year. You can read the posts from last year by going to the right of this page and hitting the arrow (you have to hit the triangle) >2008 that will then open up each of the months. Open up >June and you can see my posts of a year ago.
Sometimes it seems like eons ago that we went through that hell, other times it seems like yesterday. But in all cases we know we were truly fortunate to get the diagnosis, the treatment, and the support that we had so quickly. As I have said, we are not out of the dark, scary cave, and we don't know what lies ahead, but we also know that Chris has made incredible progress. We have a virtual army of supporters (all of you) who have made all the difference in the world.
Chris will be back for the next verdict (the next big turn in the cave) on July 27th. We have six weeks to enjoy the present and hopefully not worry about what we find out then.
Friday, June 12, 2009
Monday, June 8, 2009
It's been about 1 year...
Chris and I moved into Boston for the start of her treatment one year ago this week. It was right during all the high school graduation parties for Abby and it is a bit strange as Stephen's have been going on all week (he graduated Friday evening) and it seems like deja vu all over again. We spent our first night in Boston at the new apartment on June 8th and she had day 1 of the stem cell collection on June 10. What a year.
This past week Chris has been doing the normal circuit of graduation parties and for many people, they have not seen her since last year. The comments are always, "you look great" or "wow, you have so much energy". A year ago we were both completely scared as to what would happen in the next few weeks, Chris was miserable with edema, shortness of breath, and overwhelming anxiety, and I was going into learn, advocate, and prepare mode (and also had overwhelming anxiety). Chris had been confirmed with amyloidosis, was almost rejected for the stem cell transplant due to heart damage, and we were walking into a dark cave where every turn was new to us. I certainly know the cave walk is not over, as we have many twists and turns and dangers ahead that we can't see or predict yet, but as we sit here today, Chris is doing great. Her edema is completely gone, her lungs are clear, her energy level is amazing, her blood pressure is good, and her weight is slowly gaining. All positive. She does have bouts with nausea (last week she lost everything, in all directions, for about a 5 hour period) but this seems to happen very rarely, about every 6-8 weeks. We can't figure out exactly what causes it, but she can't blame it on my cooking as she hasn't touched that since we left Boston. Chris' spirits are generally very good, except she struggles with 2 emotions: 1) sometimes she feels like she prayed so hard to make it through the kids high school graduations that now comes the payback and 2) she feels like she is a member of a community of amyloidosis patients (which she is) and she feels guilty when other community members don't do as well as her. Another patient (from the Pittsburgh area) passed away in the last few days having been to weak for a stem cell transplant. This is the third time in the last year that Chris has known or felt an attachment to someone who has lost the battle to amyloidosis. Each of these losses is a different story and each of them are tragic, and Chris feels so much pain for the families. She wants to feel good about her own results so far but knows the pain others are enduring.
Yesterday Chris drove down to Cape May NJ to attend the 8th grade graduation of her sister Debbie's son, Tommy. She and her parents are staying in a beautiful old hotel on the beach and it will be the first time Chris has travelled without me in over a year. She did not seem nervous at all, but we know that for some reason, when she travels, she seems to get very ill. I'm hoping this trip goes very well of course as we are heading out to LA next month. It is great that Chris is able to go down to NJ as Debbie spent the summer taking care of things back in Holliston. She gave up her entire summer last year helping us and Chris was determined to get down there for awhile this year.
We had some great news from our friends Tim and Connie from Ohio. Tim, who had the stem cell transplant last summer and has been on oral chemo since last fall has had some real improvement in his numbers. I spoke to him Sunday and he sounded very upbeat (despite a blood clot in his foot) and the doctors told him they expect even more improvement (at or within normal levels) by his next trip back to Boston in September. Tim has been on a roller coaster, but this is really exciting news.
Chris received a beautiful hand made necklace from Jen and Steve Gershman this week celebrating one year. Jen has been such an incredible inspiration to Chris and we both feel we owe so much to her and Steve. They were (and are) our mentors, our guides, and our friends. They are ahead of us in the dark cave we are in and they keep yelling back to us, "keep going, it's alright".
Our next milestones are: reliving some of the key days of June of last year, getting Melissa home from 6 months in Australia, getting to the triathlon in LA, and then getting the full one year evaluation at BU the week of July 27th. This will actually be 13 months, but we have had a number of tests throughout the year so we are ok with being a bit late and letting Chris enjoy July. In any scenario, Chris won't start any further treatment until September. We are hosting a long overdue party at the end of August with some of our best friends up in Maine and it is very important that we make this happen this year.
So that is the latest. Chris has more graduation parties over the next few weeks, and it is exciting to see her back being social, energetic, and spirited.
I have had many people tell me over the last week that when I don't update the blog for awhile, they get nervous, so I will do better. I also need to post some of the pictures from Stephen and Aislinns' visit to BU. I'll post as soon as I get them sent to me (hint hint).
Thanks for all the support. More soon.
This past week Chris has been doing the normal circuit of graduation parties and for many people, they have not seen her since last year. The comments are always, "you look great" or "wow, you have so much energy". A year ago we were both completely scared as to what would happen in the next few weeks, Chris was miserable with edema, shortness of breath, and overwhelming anxiety, and I was going into learn, advocate, and prepare mode (and also had overwhelming anxiety). Chris had been confirmed with amyloidosis, was almost rejected for the stem cell transplant due to heart damage, and we were walking into a dark cave where every turn was new to us. I certainly know the cave walk is not over, as we have many twists and turns and dangers ahead that we can't see or predict yet, but as we sit here today, Chris is doing great. Her edema is completely gone, her lungs are clear, her energy level is amazing, her blood pressure is good, and her weight is slowly gaining. All positive. She does have bouts with nausea (last week she lost everything, in all directions, for about a 5 hour period) but this seems to happen very rarely, about every 6-8 weeks. We can't figure out exactly what causes it, but she can't blame it on my cooking as she hasn't touched that since we left Boston. Chris' spirits are generally very good, except she struggles with 2 emotions: 1) sometimes she feels like she prayed so hard to make it through the kids high school graduations that now comes the payback and 2) she feels like she is a member of a community of amyloidosis patients (which she is) and she feels guilty when other community members don't do as well as her. Another patient (from the Pittsburgh area) passed away in the last few days having been to weak for a stem cell transplant. This is the third time in the last year that Chris has known or felt an attachment to someone who has lost the battle to amyloidosis. Each of these losses is a different story and each of them are tragic, and Chris feels so much pain for the families. She wants to feel good about her own results so far but knows the pain others are enduring.
Yesterday Chris drove down to Cape May NJ to attend the 8th grade graduation of her sister Debbie's son, Tommy. She and her parents are staying in a beautiful old hotel on the beach and it will be the first time Chris has travelled without me in over a year. She did not seem nervous at all, but we know that for some reason, when she travels, she seems to get very ill. I'm hoping this trip goes very well of course as we are heading out to LA next month. It is great that Chris is able to go down to NJ as Debbie spent the summer taking care of things back in Holliston. She gave up her entire summer last year helping us and Chris was determined to get down there for awhile this year.
We had some great news from our friends Tim and Connie from Ohio. Tim, who had the stem cell transplant last summer and has been on oral chemo since last fall has had some real improvement in his numbers. I spoke to him Sunday and he sounded very upbeat (despite a blood clot in his foot) and the doctors told him they expect even more improvement (at or within normal levels) by his next trip back to Boston in September. Tim has been on a roller coaster, but this is really exciting news.
Chris received a beautiful hand made necklace from Jen and Steve Gershman this week celebrating one year. Jen has been such an incredible inspiration to Chris and we both feel we owe so much to her and Steve. They were (and are) our mentors, our guides, and our friends. They are ahead of us in the dark cave we are in and they keep yelling back to us, "keep going, it's alright".
Our next milestones are: reliving some of the key days of June of last year, getting Melissa home from 6 months in Australia, getting to the triathlon in LA, and then getting the full one year evaluation at BU the week of July 27th. This will actually be 13 months, but we have had a number of tests throughout the year so we are ok with being a bit late and letting Chris enjoy July. In any scenario, Chris won't start any further treatment until September. We are hosting a long overdue party at the end of August with some of our best friends up in Maine and it is very important that we make this happen this year.
So that is the latest. Chris has more graduation parties over the next few weeks, and it is exciting to see her back being social, energetic, and spirited.
I have had many people tell me over the last week that when I don't update the blog for awhile, they get nervous, so I will do better. I also need to post some of the pictures from Stephen and Aislinns' visit to BU. I'll post as soon as I get them sent to me (hint hint).
Thanks for all the support. More soon.
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