Saturday, July 16, 2011


I started my blog at the suggestion of my therapist; I felt I was being defined by my illness. The blog would be a way I could update friends and family on my condition and progress so that when we talk or get together the conversation wasn’t always centered on Amyloidosis or Amy. It was also a great way to think through things and get them off my mind.

One could make the assumption that since I have not updated my blog since March that things are going well but in all honesty I have been struggling both physically and mentally.

Declan asked me the other day if I ever catch myself talking to myself and if sometimes I actually do it out loud? My answer, everyday! It might be time for me to get a few things off my chest. Ya think?!

Last summer we all came up with the brilliant idea that we (meaning Dad) should rent a villa in Provence this summer to celebrate his turning 80 this year. Thankfully my father is a good sport about all of us helping him find ways to spend his money on us! The trip was planned for June.

All through my illness I set goals for myself and making it to France was a big one. I just needed my kidneys to stay healthy enough to keep me off dialysis and to taper off on my chemo to make it all happen.

When I went to Mayo last January Dr. Buadi put me on a new chemo schedule. The new plan is to continue the velcade but instead of 4 weeks on and one week off I will go to 4 weeks on and 4 weeks off. I was thrilled because this tied me down a lot less than the other schedule and would allow me to go to France.

Unfortunately this new schedule has been very challenging for me. The reentry into Velcade after a month off is proving to be more difficult than I expected. It's clear to me now that some of the side effects I was attributing to the steroids were actually from the velcade. On top of that when I get sick I get SICK. No minor head cold or bug for me baby. I get ghastly ill. While I was lucky enough to survive pneumonia with out being hospitalized I was not as lucky when I became ill at the end of May into early June.

I ended up in the hospital with dehydration the week we were supposed to leave for France. The boys and I were supposed to go for the entire 3 weeks but now that I was hospitalized there was no way I was making the flight on June 10. Matt and I decided to

Send the boys on to France with David and his family and we would meet them a week later.

All my doctors and nurses did their best to get me well enough to fly on the 17th and my father generously bought a business class ticket for me. He offered to buy one for Matt as well but my frugal husband elected to fly coach. I honestly don’t think I could have made the trip if I hadn’t had the upgrade and the ability to lie flat.

I think it was very hard for the boys to leave me behind in the hospital the previous week because they looked very relieved when we arrived. The house in Provence was amazing. Matt and I had the ground floor bedroom and I spent the first week there recuperating.

Into the second week we had plans to spend our last 3 days in Paris. Originally Matt was not going to be with us but with all the changes that had been made he stayed the full 2 weeks. Sally Kalmbach had arranged for a driver/guide and boy did we see Paris. Roger our guide was amazing. There was not a question he could not answer and his energy was phenomenal. I normally would not pack so much into 3 days as we had very little down time but since my health has been so lousy this winter and spring I was afraid this might be the last time I would be able to make a trip like this. I wanted to see Paris through my children’s eyes even if they were a bit bloodshot and red rimmed. It was challenging but we had an amazing time.

We are back now and I am back on chemo. Once again the reentry was brutal and I was quite sick Tuesday evening and all day Wednesday. I am back up at Mayo the end of this month and some adjustments have to be made. I need a better quality of life. Good days are too few and far between as well as they just aren’t that good, they are just ok. I hate to complain but it’s very trying always feeling ill.