I was going to add an end of year post about all the things that happened in 2011, then I decided it is all documented within the blog already. I also decided against it because frankly 2011 kind of sucked. Sorry, I have no polite way to say how I feel about the last twelve months.
This post however is about looking ahead to 2012. The last two weeks have brought further improvement to the fatigue and nausea I have been fighting. Things are not 100% but they sure are better. I just need my appetite to return to normal so hopefully I can put on some of the weight I lost. I was able to walk with the disc golf crew both Wednesday and this morning and that felt wonderful both physically and mentally.
I want to keep this short so in closing I wish each of you a happy and blessed 2012!
December 31, 2011
December 23, 2011
Merry Christmas!
As Brad and I prepare for our Christmas celebration, we would like to share with you our appreciation and dedication to David. Our seven year journey since David was diagnosed with advanced prostate cancer has taken us on an emotional roller coaster ride, but more importantly, it has allowed us to grow closer to each other and we have learned to appreciate each day.
Starting the FLHW foundation was solely due to David's vision and his desire to make a difference in the prostate cancer community. As we learned that there were limited treatments for a man with advanced prostate cancer, we all agreed that we wanted to try to support the research for new and/or improved treatments, and ultimately a cure. As we began this new journey of our life, we were inspired by the Prostate Cancer Foundation (PCF). Not only did we partner with them to support the medical research and promote the importance of early detection, but we also turned to PCF to help us to understand what our treatment options were. PCF also provided resources for us to learn what we could do to manage David's disease. Ultimately, what PCF did for us was to give us hope. One of the darkest days a cancer patient can have is a day when he/she must struggle to find hope.
Enclosed below is a link to PCF's annual report. David's story is featured amongst several other PC survivors.
http://www.pcf.org/site/c.leJRIROrEpH/b.7908621/k.A115/Our_Stories.htm
Brad and I are very proud of David's positive approach to battle this disease and his selfless determination to help others along the way. Of the many blessings we are thankful for this Christmas, we are most thankful for being together as a family.
We would like to wish each of you a very Merry Christmas and a hopeful, happy, healthy New Year.
God Bless,
Mary & Brad
Starting the FLHW foundation was solely due to David's vision and his desire to make a difference in the prostate cancer community. As we learned that there were limited treatments for a man with advanced prostate cancer, we all agreed that we wanted to try to support the research for new and/or improved treatments, and ultimately a cure. As we began this new journey of our life, we were inspired by the Prostate Cancer Foundation (PCF). Not only did we partner with them to support the medical research and promote the importance of early detection, but we also turned to PCF to help us to understand what our treatment options were. PCF also provided resources for us to learn what we could do to manage David's disease. Ultimately, what PCF did for us was to give us hope. One of the darkest days a cancer patient can have is a day when he/she must struggle to find hope.
Enclosed below is a link to PCF's annual report. David's story is featured amongst several other PC survivors.
http://www.pcf.org/site/c.leJRIROrEpH/b.7908621/k.A115/Our_Stories.htm
Brad and I are very proud of David's positive approach to battle this disease and his selfless determination to help others along the way. Of the many blessings we are thankful for this Christmas, we are most thankful for being together as a family.
We would like to wish each of you a very Merry Christmas and a hopeful, happy, healthy New Year.
God Bless,
Mary & Brad
December 18, 2011
Pretty close to normal
For all the issues I've been having lately, today, for more than a few hours, normalcy returned to our lives.
It started early this morning when I decided I would hit the disc golf course. No, not to play, just to walk along and visit with some of the guys. It only got better when Mary, for the first time ever, decided to join me. The crowd was light but it was already over forty degrees when we got to the park. I was only able to last until the 11th hole for two reasons; first I didn't want to overdue it and two, the easiest way out of the woods is after the 11th hole.
We went home, I had a quick 30 minute nap and then it was time to get ready for the matinee show for Trans Siberian Orchestra. Brad, Mary and I had a great time,but it was not at all what we expected. I was expecting something more along the lines of Mannhiem Steamroller, this was more of a rock opera performance, with some seasonal music added in occasionally. The lights and special effects component was very, very impressive.
After the performance, it was off to the Country Club Plaza and our favorite restaurant, Houston's. When we walked in at 6:30pm there was already a ninety minute wait.! Being seasoned veterans at Houston's, within five minutes we had seats at the bar and were placing our orders for dinner! The service we received was as good as having our own booth in the dining room.
What a perfect, busy, entertaining, and nearly normal day!
It started early this morning when I decided I would hit the disc golf course. No, not to play, just to walk along and visit with some of the guys. It only got better when Mary, for the first time ever, decided to join me. The crowd was light but it was already over forty degrees when we got to the park. I was only able to last until the 11th hole for two reasons; first I didn't want to overdue it and two, the easiest way out of the woods is after the 11th hole.
We went home, I had a quick 30 minute nap and then it was time to get ready for the matinee show for Trans Siberian Orchestra. Brad, Mary and I had a great time,but it was not at all what we expected. I was expecting something more along the lines of Mannhiem Steamroller, this was more of a rock opera performance, with some seasonal music added in occasionally. The lights and special effects component was very, very impressive.
After the performance, it was off to the Country Club Plaza and our favorite restaurant, Houston's. When we walked in at 6:30pm there was already a ninety minute wait.! Being seasoned veterans at Houston's, within five minutes we had seats at the bar and were placing our orders for dinner! The service we received was as good as having our own booth in the dining room.
What a perfect, busy, entertaining, and nearly normal day!
December 13, 2011
Thoughts from Gate A2
Well the trip back and forth to Boston went like most, uneventful. Mary took me to the airport for the 7:00am flight and then it was just a quick subway ride to Mass General.
I talked with Dr. S about reducing my dosage and he was willing to do so, however, it came with the following stipulation: if we lowered the dose, we couldn't later increase it if we needed to. He left it up to me, but his opinion was to maintain the 75 mg level since the bone pain has subsided so much. If the fatigue and nausea become any worse, he said to call ASAP.
While yesterday was one of the better days I've had in weeks, today was a drain from the start. As I write this I still have an hour before the flight boards and 90+ minutes before we depart. Though the flight home is direct, it still takes nearly four hours flying against the jet stream. I've never been able to sleep on planes, but tonight could be an exception. The nausea has been mild today and I have just been pushing through the fatigue all day.
The good news is my appointments in Boston have now changed from every 3 weeks to every 6 weeks. So long beantown until late January!
I talked with Dr. S about reducing my dosage and he was willing to do so, however, it came with the following stipulation: if we lowered the dose, we couldn't later increase it if we needed to. He left it up to me, but his opinion was to maintain the 75 mg level since the bone pain has subsided so much. If the fatigue and nausea become any worse, he said to call ASAP.
While yesterday was one of the better days I've had in weeks, today was a drain from the start. As I write this I still have an hour before the flight boards and 90+ minutes before we depart. Though the flight home is direct, it still takes nearly four hours flying against the jet stream. I've never been able to sleep on planes, but tonight could be an exception. The nausea has been mild today and I have just been pushing through the fatigue all day.
The good news is my appointments in Boston have now changed from every 3 weeks to every 6 weeks. So long beantown until late January!
December 12, 2011
It better be working, I pray it is
I haven't posted in a while because I am still struggling with nausea and fatigue. Though these are known side effects of the XL-184, it doesn't make dealing with them any easier. It is a constant, daily battle. I now have three different anti-nausea drugs and though they provide some relief, none of them is perfect. As for the fatigue, it has just become a recurring daily theme. Some days are good, others I spend a lot of time napping.
For now, I just have to fight through it until my next appointment in Boston. At that time I am really going to push for the doctor to lower the dose I am on to 50mg. I am not sure if the doctor will agree, but I plan on making a strong case. The nausea continues to cause weight loss (aprox. 23 lbs now) and the fatigue has just gone on too long.
Aside from these two wonderful challenges, we, like the rest of you, are trying to get ready for Christmas. I should correct that and state that Mary is trying to get us ready for Christmas. The house looks great and her shopping is well under way. This is one of my favorite times of the year and not being able to do much to help is really weighing on me. I want to do more to help decorate and shop, but as I mentioned above, it's just not in the cards right now. On Sunday I helped Mary and Brad cover our patio furniture and helped Brad run the extension cords needed to run some Christmas light in the front of the house. That consisted of twenty, maybe thirty minutes of very light work and I was zapped and had to returned to the recliner to recover. I've read a number of ebooks and seen a lot of NFL football, but I want some semblance of normalcy to return to my life!
I'll try to update the blog more frequently between now and the end of the year, God Bless you all.
For now, I just have to fight through it until my next appointment in Boston. At that time I am really going to push for the doctor to lower the dose I am on to 50mg. I am not sure if the doctor will agree, but I plan on making a strong case. The nausea continues to cause weight loss (aprox. 23 lbs now) and the fatigue has just gone on too long.
Aside from these two wonderful challenges, we, like the rest of you, are trying to get ready for Christmas. I should correct that and state that Mary is trying to get us ready for Christmas. The house looks great and her shopping is well under way. This is one of my favorite times of the year and not being able to do much to help is really weighing on me. I want to do more to help decorate and shop, but as I mentioned above, it's just not in the cards right now. On Sunday I helped Mary and Brad cover our patio furniture and helped Brad run the extension cords needed to run some Christmas light in the front of the house. That consisted of twenty, maybe thirty minutes of very light work and I was zapped and had to returned to the recliner to recover. I've read a number of ebooks and seen a lot of NFL football, but I want some semblance of normalcy to return to my life!
I'll try to update the blog more frequently between now and the end of the year, God Bless you all.
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