The new owners of our old house on the river, Nancy and Shirley, have become good friends. We had them over for dinner a couple of weeks ago and we got to talking. Nancy works for Genentech as an advocate for cancer patients to help them afford the costs of their medications. She has a good friend, Jeff, who works for Celgene, who makes the Revlimid that I have been taking ever since my diagnosis with MM.
Nancy thought that I might make a good patient ambassador for Celgene, given my MM story and history. She set up a dinner meeting for all of us last night in Kennebunk, Maine at a great restaurant, "When Pigs Fly". There I met Phil and another manager from Celgene, Tina. As it turns out, Celgene doesn't have a formal patient ambassador program in place at this time, but they were both very interested in my MM story and will look into any opportunities for me to get involved to provide a patient perspective at some of their meetings. If it works out, great, but if not, I will find other ways to give back to the MM community. Whatever happens, the food was awesome and it was a wonderful evening.
I had my monthly visit to the Farber today. Fortunately, my numbers are still good (knock on wood). Since it has been a year since my last X-Ray bone scan, I had that done today. I also had two more immunizations left to be done, so I had my pneumonia shot today. I now have just one more live virus shot left to do to complete my immunization program since my stem cell transplant. I plan to get that next month, so I should be in good shape for us to head off to Peru in July.
I am nearing the end of my 3-year stint on the three-armed stem cell transplant clinical trial BMT-CTN 0702. Since Paul Richardson told me last month at the MMRF race/walk that I would be continuing maintenance therapy with Revlimid, I went online to find out what the story was. As it turns out, the Protocol 0702 that I'm on runs out after 38 months following assignment to one of the 3 arms of the protocol. I'm now getting to this point. However, there is now an extension to this clinical trial that extends it until 2018. I think what has happened is that Celgene has now decided to extend providing Revlimid for free to trial participants for another 3 years. They have assigned a new protocol number for this extension. I believe the new clinical trial is Protocol BMT CTN 07LT. I presume a new consent form will be required for me to join the trial. I brought this up with my nurse, Mary, today, but she didn't know anything about it. I have a feeling I'm way ahead of them on this. I will have ample opportunity to discuss this with Paul Richardson when I meet with him next month. We'll see.
On a sad note. one of my favorite people at the Farber, nurse Muriel Gannon, is retiring. She wasn't there today, so I didn't have a chance to say goodbye to her in person. She has been a constant helpful presence for me during my entire transplant journey, so I will miss her a lot. I know the people at the Farber will miss her a lot too. Have a wonderful retirement, Muriel!
Wednesday, May 27, 2015
Thursday, May 14, 2015
Pittsburgh Marathon
It's been too long since I last posted. I apologize for that. I have no valid excuse except that I have been overwhelmed by our new house, especially with the explosion of springtime plants and flowers as the warm weather has arrived. There are beautiful gardens here left by the previous owners which are now springing into life. How beautiful! I feel the need to take care of these and nurture them. I am now their caretaker and I don't want to fail them. There is a legacy here to be preserved. It's also a good thing, as it is keeping me busy. It's been very dry over the last month, so I have been watering a lot. Fortunately, we have a well for watering the lawn and plants, so I don't have to worry about the water bill.
It is beautiful here...we love it! It's so peaceful to just sit and look at the woods. It's very different from the "River House" that we just left. The Merrimack River was beautiful, but it wasn't always peaceful. The current was often strong and the wind would gust in from the water and whip up the waves. It was exciting at times, but not always calm. We are really enjoying the total relaxation of just looking at the beautiful quiet woods adjoining our back yard.
Over the first weekend in May, I went to Pittsburgh to watch the Pittsburgh Marathon. Unfortunately, Gretchen couldn't come because she had some previous commitments here. It was a great trip, as I got to visit my brother Terry and his wife Sherry for a couple of days beforehand. The 3 of us got play 18 holes of golf on a beautiful Friday. That didn't suck! Then on Saturday, I had the pleasure of having dinner with the rest of my extended family. My sister-in-law Kathy and my niece Meghan and her husband Jon were there with their 2-year old son Chase whom I met for the first time. I also got to meet my brother Terry's step granddaughter Briarly, also for the first time. My God, it's been much too long since I have been back to my old home town to catch up with my family. That was so awesome!
The marathon was wonderful! 40,000 runners competed, and it was amazing. The weather was fantastic. My son Brian and his wife Pam both ran the half marathon. Pam's sister Michelle (who lives in Boston) ran the full marathon (gulp), and Terry's step daughter Bree ran a relay leg in the full marathon. What a running family!
I had the pleasure of babysitting my grandson Logan for the night before and during the marathon. I was nervous but it worked out great. We got up early to get into Pittsburgh in time to see Brian and Pam run. Here is a picture I got at the 3.5 mile point in their run. Look at them. My God, it must be great to be young!
This brings up another point. In my last post, I chronicled the MMRF 5K walk/run fundraiser event we recently attended in Boston. While we were in Pittsburgh, my family of runners agreed that they would like to come to Boston next April to run in the next MMRF 5K event. That would be awesome! I have already emailed Anne Riskin to suggest that we could all join their team of Jeff's Juggernauts to raise money in memory of her husband Jeff who died of MM several years ago. She will be delighted to have us join her team. This should be a great opportunity for us to combine a worthy MM fundraising event with a family reunion. I will keep you informed when we learn the particulars of next year's event, which should be announced some time in January. I'm really excited about this! I'm even thinking about training to run the 5K rather than walk it, but don't hold me to that. It's just a wild thought.
Last week there was a Frontline program featuring the newsman Tom Brokaw, who has Multiple Myeloma. I think it is awesome that he has gone public to raise awareness of MM. I missed the broadcast, but the MMRF has made it available to view online. Here is the link: http://www.themmrf.org/tom-brokaw/. It's a very good and personal look at his journey. If you haven't seen it, I would definitely recommend watching it. He is a great spokesman for MM patients. His journey was more difficult than mine, but I'm glad to hear that like me, he is in remission at this time. He has also written a book that I may buy to get the details of his story.
Until next time...
It is beautiful here...we love it! It's so peaceful to just sit and look at the woods. It's very different from the "River House" that we just left. The Merrimack River was beautiful, but it wasn't always peaceful. The current was often strong and the wind would gust in from the water and whip up the waves. It was exciting at times, but not always calm. We are really enjoying the total relaxation of just looking at the beautiful quiet woods adjoining our back yard.
Over the first weekend in May, I went to Pittsburgh to watch the Pittsburgh Marathon. Unfortunately, Gretchen couldn't come because she had some previous commitments here. It was a great trip, as I got to visit my brother Terry and his wife Sherry for a couple of days beforehand. The 3 of us got play 18 holes of golf on a beautiful Friday. That didn't suck! Then on Saturday, I had the pleasure of having dinner with the rest of my extended family. My sister-in-law Kathy and my niece Meghan and her husband Jon were there with their 2-year old son Chase whom I met for the first time. I also got to meet my brother Terry's step granddaughter Briarly, also for the first time. My God, it's been much too long since I have been back to my old home town to catch up with my family. That was so awesome!
I had the pleasure of babysitting my grandson Logan for the night before and during the marathon. I was nervous but it worked out great. We got up early to get into Pittsburgh in time to see Brian and Pam run. Here is a picture I got at the 3.5 mile point in their run. Look at them. My God, it must be great to be young!
This brings up another point. In my last post, I chronicled the MMRF 5K walk/run fundraiser event we recently attended in Boston. While we were in Pittsburgh, my family of runners agreed that they would like to come to Boston next April to run in the next MMRF 5K event. That would be awesome! I have already emailed Anne Riskin to suggest that we could all join their team of Jeff's Juggernauts to raise money in memory of her husband Jeff who died of MM several years ago. She will be delighted to have us join her team. This should be a great opportunity for us to combine a worthy MM fundraising event with a family reunion. I will keep you informed when we learn the particulars of next year's event, which should be announced some time in January. I'm really excited about this! I'm even thinking about training to run the 5K rather than walk it, but don't hold me to that. It's just a wild thought.
Last week there was a Frontline program featuring the newsman Tom Brokaw, who has Multiple Myeloma. I think it is awesome that he has gone public to raise awareness of MM. I missed the broadcast, but the MMRF has made it available to view online. Here is the link: http://www.themmrf.org/tom-brokaw/. It's a very good and personal look at his journey. If you haven't seen it, I would definitely recommend watching it. He is a great spokesman for MM patients. His journey was more difficult than mine, but I'm glad to hear that like me, he is in remission at this time. He has also written a book that I may buy to get the details of his story.
Until next time...
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