There's a song, Mad World by Gary Jules, I believe it's a re-recording of an old Tears for Fears song. I find it to be a heart wrenching song, but it also is a song that I enjoy dearly. There are a few lines that touch far to close to home:
"And I find it kind of funny,
I find it kind of sad,
The dreams in which I'm dieing,
Are the best I ever had.
http://www.youtube.com/watch?v=4N3N1MlvVc4
There are aspects of my life right now that are perfection, little bits that I cherish. A lot of the rest is just chaotic and frankly tiresome. It will get better, I have faith that it will happen.
Showing posts with label XL 184. Show all posts
Showing posts with label XL 184. Show all posts
April 14, 2012
March 24, 2012
From an unexpected source
There’s a light at the end of the tunnel;
though, it seems to be fading fast.
And my eyes are fatigued and blurring
. . . yet, my faith tells me I will last.
There’s a train sounding off in the distance;
though, it’s barely a whisper,now.
And my hearing is not what it used to be
. . . yet, I know that it’s there, somehow.
There’s a mountain that looms before me;
there’s a storm driving at my back;
and a river that rages beneath my feet
. . . yet, I’ll weather the worst attack.
For, my spirit will not diminish,
nor my confidence ever grow weak.
I have hope, I have faith and the gift of love
and a world full of dreams to seek.
Wild Willy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I received this poem the other day from a friend, one I would least expect to send a poem.
However, he couldn't have read my situation any better. The words hit so close to home.
Thanks, this was really special.
though, it seems to be fading fast.
And my eyes are fatigued and blurring
. . . yet, my faith tells me I will last.
There’s a train sounding off in the distance;
though, it’s barely a whisper,now.
And my hearing is not what it used to be
. . . yet, I know that it’s there, somehow.
There’s a mountain that looms before me;
there’s a storm driving at my back;
and a river that rages beneath my feet
. . . yet, I’ll weather the worst attack.
For, my spirit will not diminish,
nor my confidence ever grow weak.
I have hope, I have faith and the gift of love
and a world full of dreams to seek.
Wild Willy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I received this poem the other day from a friend, one I would least expect to send a poem.
However, he couldn't have read my situation any better. The words hit so close to home.
Thanks, this was really special.
March 14, 2012
Same ol' song and dance, my friends
Last week I made my scheduled trip to Boston. I departed Kansas City with a forecast calling for 70 degrees and landed in Boston to a chilly 27 degrees. It was just someone’s way of reminding me that it’s not quite spring!
This trip to Boston did not include scans, so it was a roundtrip, one day schedule. The meeting with the doctor was quick but full of good news. He had the official Radiologist report from the pharmaceutical company (Exelixis) and they reported the when comparing my baseline scans from August to my most recent scans from late January, the overall reduction in my bone tumors was 95%! Seriously! So refreshing to receive good news! Although managing the side effects of this treatment have been a challenge and definitely impacted our quality of life, we know that ultimately the treatment is combatting the cancer, so it is all good.
This means for now, we just keep headed down this path to see how long we can make this last. For now, I won't return until mid-April and with that appointment I will have scans again. As long as we see at least stability on those scans, we move forward.
The rest of the week was up and down emotionally. Our young friend passed away, the funeral was wonderful, but I could not talk to her husband. When I opened my mouth, I just wanted to cry. He said he felt the same way. Fortunatley Mary was there to keep it together. We continue to pray for him and his young son, who is truly an awesome young man.
In additional to that, we continue to pray for one of the long time contributors to the 'advancedprostatecancer' group at Yahoo Groups. I mentioned John A. here in my last post. He had a bad few days, but is still going strong.
Thursday night my brother Doug called and asked if he and his wife could come up to visit. It was fun! We watched a lot of college basketball, cooked and ate too much! So enjoyed their company!
The weather this week is calling for over seventy degrees every day! After work walks with Mary will be in order every evening! It is enlightening to have Spring at our door!
February 29, 2012
My own little beta test
Monday we visited with my local Oncologist, Dr. V. M PSA was 1,663, that is down 130 points from the previous month. Although we are not screaming from the rooftops, psychologically, we always feel more positive when we see the PSA moving in a downward direction.
Back in January we discussed with Dr. V the fact my Potassium level was low. This is a known side effect from my current long term diarrhea issue. While I was someone who used to eat at least one banana a day, with my current appetite, bananas are off the menu. We have tried coconut water and have now added a prescription Potassium pill to the regime and will test again next month. Just another side effect to add to the list.
Additionally, I received my usual monthly shots of Xgeva (bone strengthener) and Firmagon (testosterone suppressant).With so many variables going on with my case, sometimes it’s hard to track down the cause or correlation of certain side effects. The past two plus weeks I have been relatively pain free. I have not had any Advil and I stopped having to sleep on a heating pad at night. This was not true for the ten days to fourteen days that followed my last shots of Xgeva and Firmagon.
Where I am going with this is I believe that I have figured out the pattern. Starting a few days after receiving these two shots, I begin to have pain. It may start in my shoulders, hips, legs, middle or lower back, but it never starts in the same place. It usual moves around every day or two and like I said above, it will last around ten days. I treat it with Advil every twelve hours or so and sleeping on a heating pad helps considerably. The pain ends rather abruptly, and the second two week period will be closer to normal ~ free of bone pain.
This is all just a theory right now, but over the next few days you can bet I will be very in tune with each little ache and pain.
~~~~~~~~~~~~~~~~~~~~~~~~~~~
After a very mild winter, spring is right around the corner! Our tulips and hyacinth have popped out of the ground. I cannot wait for warmer days. Mary and I went for a walk around the neighborhood on Sunday. It felt great to get out and enjoy the fresh air. This this is something we really plan to continue.
February 02, 2012
7 year itch, of a different type
Today is the 7th anniversary of my blog. Seven years, almost 700 entries later, and I’m still here.
The last line of my first ever post holds more true today than ever:
But I worry about them both emotionally and psychologically. I can't imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have.....
But I worry about them both emotionally and psychologically. I can't imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have.....
Physically, the seven years and eight different types of treatment for this disease have taken their toll. Not being able to play disc golf or even work out gets to me. The lack of both make me feel lethargic at times. I want to do more, but can’t in some cases and shouldn’t in others.
A friend said today, ‘I don’t know how you get through one or two of the side effects, and you’re dealing with all four’. I told Mary the other night that I am so sick of it (the side effects). Just like always though. I trudge along and just keep praying that the reduced dosage, or one of the new meds, or a combination of the two will end at least one of the side effects. That alone would be a huge burden lifted from my shoulders.
You know the saying “If I could go back and do “x” over again, I wouldn’t change a thing…..” in this case I’m calling BS early and often. I’d change most of the last ten years if I knew it wouldn’t lead me here, now. At times it just sucks, this is one of those times.
~~~~~~~~~~
Though it started this way, this post isn’t going to be 100% about me being sorry for myself. There are so many other good things in life that I celebrate on a daily basis. I have a wife and son that I love dearly. I have family and friends that remain close and are so very important to me. I live in a world so full of hope and possibilities I have to stop and appreciate that fact from time to time.
Novena to Saint Peregrine
Oh great Saint Peregrine, you who have been called "The Mighty" and "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.
Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.
A friend said today, ‘I don’t know how you get through one or two of the side effects, and you’re dealing with all four’. I told Mary the other night that I am so sick of it (the side effects). Just like always though. I trudge along and just keep praying that the reduced dosage, or one of the new meds, or a combination of the two will end at least one of the side effects. That alone would be a huge burden lifted from my shoulders.
You know the saying “If I could go back and do “x” over again, I wouldn’t change a thing…..” in this case I’m calling BS early and often. I’d change most of the last ten years if I knew it wouldn’t lead me here, now. At times it just sucks, this is one of those times.
~~~~~~~~~~
Though it started this way, this post isn’t going to be 100% about me being sorry for myself. There are so many other good things in life that I celebrate on a daily basis. I have a wife and son that I love dearly. I have family and friends that remain close and are so very important to me. I live in a world so full of hope and possibilities I have to stop and appreciate that fact from time to time.
Novena to Saint Peregrine
Oh great Saint Peregrine, you who have been called "The Mighty" and "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.
Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.
January 31, 2012
An interesting thing happened on the way.......
Monday was my monthly oncologist appointment here in Kansas City. It went rather well, in fact I'd almost say it went great!
Dr. V provided new prescriptions to try to help with managing the side effects. The first is an appetite enhancer. I wish it had been prescribed for me initially when I started experiencing the nausea. The first dose seemed to help with dinner last night, I took the second dose before lunch today so should have an indication soon if it is consistently effective. Last night it really helped with nausea. I am hopeful that it will be the same today. The doctor is understandably concerned about my fatigue and weight loss due to the on-going nausea and intestinal issues. With not many treatment options, Mary and I are doing our best to stay positive and make informed decisions. The doctor is very compassionate and open to helping us choose the right path.
The other three scripts were for potassium (mine is low!), another type of medicine to try as an option to combat the nausea, and a refill on another drug I take to help me to sleep.
I also received an update on my PSA, the last three measures were:
Dec 5: 1,961
Jan 3: 1,317
Jan 30: 1,799
Those are rather wild swings and we are trying not to focus on the PSA, although it is rather difficult to ignore a number that high. We continue to try to focus on the good news from Boston last week after the bone and CT scans, with increased shrinkage in the tumors in my bones and the CT scan showing that the organs are still clear. We have very much to be thankful for!
Dr. V provided new prescriptions to try to help with managing the side effects. The first is an appetite enhancer. I wish it had been prescribed for me initially when I started experiencing the nausea. The first dose seemed to help with dinner last night, I took the second dose before lunch today so should have an indication soon if it is consistently effective. Last night it really helped with nausea. I am hopeful that it will be the same today. The doctor is understandably concerned about my fatigue and weight loss due to the on-going nausea and intestinal issues. With not many treatment options, Mary and I are doing our best to stay positive and make informed decisions. The doctor is very compassionate and open to helping us choose the right path.
The other three scripts were for potassium (mine is low!), another type of medicine to try as an option to combat the nausea, and a refill on another drug I take to help me to sleep.
I also received an update on my PSA, the last three measures were:
Dec 5: 1,961
Jan 3: 1,317
Jan 30: 1,799
Those are rather wild swings and we are trying not to focus on the PSA, although it is rather difficult to ignore a number that high. We continue to try to focus on the good news from Boston last week after the bone and CT scans, with increased shrinkage in the tumors in my bones and the CT scan showing that the organs are still clear. We have very much to be thankful for!
January 08, 2012
1961
First of all, although things are slightly better, my intention to start the year off with a bang and my goal to post multiple blogs has fizzled. I'll try to get better the year goes on, I promise.
I'd like to start with two prayer requests. There are multiple men I could list but tonight my mind is on Terrance from Seattle and a former neighbor of ours Jennifer. Terence had his 4th chemo infusion this week as well as a blood transfusion. He's having a rough time, so please find a minute for T. Jennifer is battling stage IV colo-rectal cancer. She is planning to head to MD Anderson in a few weeks and I hope and pray that she will find a clinical trial that proves to be an effective treatment for her cancer. Again, please include them both in your prayers.
This week I had my monthly Oncologist appointment here in Kansas City. A few of my blood markers are borderline low, potassium was one. Initially, we are going to try to increase the level with diet.Mary already came back from the store with lots of bananas, avocado and coconut water. As bad as my appetite has been, I was happy that more things weren't out of whack!
Before I break the big news I have to remind you all of a few things: first the clinical trial medicine that I am taking addresses bone tumors. Though they measure my PSA in Boston, the doctor and I don't discuss it. It is the bone scan that is the key marker.
We knew my PSA would rise because as part of the trial I had to stop taking androgen blockers. It was a risk we were willing take at the time. This week we asked my local Oncologist for my PSA and though Tuesday's measurement was not ready, my December 5th reading was 1,961. That is up from 1,043 in November and around 400+/- when we started the trial on August 30th.
On one hand, it's just a number, the scans are what's important (I tell myself in a semi-convincing manner). On the other hand I think, "Holy Roger Maris! 1,961"! From there the questions begin to mount, questions that I will be discussing with Dr. S when I return to Boston later in the month. Short term, I'm not to worried, what this might mean and how it will impact my treatment long term is what I am concerned with mostly.
I'd like to start with two prayer requests. There are multiple men I could list but tonight my mind is on Terrance from Seattle and a former neighbor of ours Jennifer. Terence had his 4th chemo infusion this week as well as a blood transfusion. He's having a rough time, so please find a minute for T. Jennifer is battling stage IV colo-rectal cancer. She is planning to head to MD Anderson in a few weeks and I hope and pray that she will find a clinical trial that proves to be an effective treatment for her cancer. Again, please include them both in your prayers.
This week I had my monthly Oncologist appointment here in Kansas City. A few of my blood markers are borderline low, potassium was one. Initially, we are going to try to increase the level with diet.Mary already came back from the store with lots of bananas, avocado and coconut water. As bad as my appetite has been, I was happy that more things weren't out of whack!
Before I break the big news I have to remind you all of a few things: first the clinical trial medicine that I am taking addresses bone tumors. Though they measure my PSA in Boston, the doctor and I don't discuss it. It is the bone scan that is the key marker.
We knew my PSA would rise because as part of the trial I had to stop taking androgen blockers. It was a risk we were willing take at the time. This week we asked my local Oncologist for my PSA and though Tuesday's measurement was not ready, my December 5th reading was 1,961. That is up from 1,043 in November and around 400+/- when we started the trial on August 30th.
On one hand, it's just a number, the scans are what's important (I tell myself in a semi-convincing manner). On the other hand I think, "Holy Roger Maris! 1,961"! From there the questions begin to mount, questions that I will be discussing with Dr. S when I return to Boston later in the month. Short term, I'm not to worried, what this might mean and how it will impact my treatment long term is what I am concerned with mostly.
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!
November 30, 2011
November Review
After 12 weeks on Cabozantinib (XL 184) things are going OK. I wish I could say GREAT, but I am also not complaining!
I started the trial on August 30th with a 25 mg dose. During the first 6 weeks I didn't notice any side effects, however I did notice an increase in bone pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.
On November 1st my dose was increased to 125mg. This dose was determined per the trial requirements. We were concerned about that high of a dose. [At this time I was on both 2 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for a rough beginning on the month.
After trying multiple over the counter laxatives, I finally got a prescription variety that started working right away. On the flip side, after six days on the higher dose of the trial medication, I was experiencing nausea that was unbearable at times. The doctor suggested I stop taking the medication for three days until the constipation and nauseas was fully relieved and then a smaller dosage would be suggested.
With both the nausea and the constipation under control, I started the trial meds again on November 10th at a new dosage level of 75mg. The following twelve days were spent readjusting the pain meds, laxatives, etc., and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few smaller tumors that had cleared up completely and most others had noticeable reductions in size.
75mg may still be too high, I still have occasional nausea issues. I'll stay on top of this over the next few days and talk to the doctor if it continues. We are trying to work around a limited appetite and I am suffering from fatigue. I have lost about 12 pounds. The best news is that I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.
Happy Holidays everyone, peace be with you all!
I started the trial on August 30th with a 25 mg dose. During the first 6 weeks I didn't notice any side effects, however I did notice an increase in bone pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.
On November 1st my dose was increased to 125mg. This dose was determined per the trial requirements. We were concerned about that high of a dose. [At this time I was on both 2 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for a rough beginning on the month.
After trying multiple over the counter laxatives, I finally got a prescription variety that started working right away. On the flip side, after six days on the higher dose of the trial medication, I was experiencing nausea that was unbearable at times. The doctor suggested I stop taking the medication for three days until the constipation and nauseas was fully relieved and then a smaller dosage would be suggested.
With both the nausea and the constipation under control, I started the trial meds again on November 10th at a new dosage level of 75mg. The following twelve days were spent readjusting the pain meds, laxatives, etc., and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few smaller tumors that had cleared up completely and most others had noticeable reductions in size.
75mg may still be too high, I still have occasional nausea issues. I'll stay on top of this over the next few days and talk to the doctor if it continues. We are trying to work around a limited appetite and I am suffering from fatigue. I have lost about 12 pounds. The best news is that I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.
Happy Holidays everyone, peace be with you all!
November 20, 2011
When a Buck is worth millions
I'm alone in the house tonight, Mary and Brad are out running errands. I'm not real fond of being alone, in fact, I have grown to detest it. I don't need a lot of conversation, just the simple presence of others, their nearness makes all the difference in the world.
I should clarify that I am never alone, he is always near to me. In this case, I am not making reference to God but to Buck. Buck is our 95 pound black lab. When we got him in 2002 I was 'in between" jobs, so back then I was with him 24x7. He was house broken with in a week. Labs are something else, the finest dog one can own.
This pictures is just a typical moment in my day with Buck. Nose on the bed for a few seconds as he checks to make sure I'm doing OK or if I need anything. He's so lovable.
Thanks Buck, I'm good right now, I'll let you know if I need anything.
November 18, 2011
Too short
It's been a heck of a month, and yet a week remains!
One of our prostate cancer brethren, Terence in Seattle, started chemo. His second treatment is in a few days and so far things are going well. Please understand that much like myself, Terence is dealing with bone tumors and pain, raising psa and other PCa related issues. His pain was excruciating and the good news is, he has seen some relief there is just a few weeks. I hope the future brings Terence more relief and many, many years of peace and happiness with Sheri and the grand kids.
In early October I added a post regarding our golf tournament (Lucky number 7). The gentleman to my right in the first photo is Bruce. Bruce and I have known each other since high school, well over thirty years. After a while, life took us separate ways, so it was great when Bruce drove in from St Louis to play in the tournament and have dinner with Mary and I. Two weeks ago Bruce went to his doctor to have a few things checked out. That appointment led to a triple by pass two days later. Bruce has children under ten years old, so that adds to the complexity of the recovery process. I wish Bruce and Lisa peace and joy as they follow their journey down the road to recovery.
I have another good friend Bill ,whom I've know since I used to kick his butt in first grade math flash card wars! He's to my left in the photo from this post (Golf 2010). It turns out last week Bill had his own heart scare. The incident happened while he was traveling to St Louis on business and required an overnight stay in the hospital and a battery of testing. Fortunately, the results were negative and his heart appears to be functioning very well. But it certainly created a stressful 36 hours of concern! Bill has three beautiful daughters. Bill, his wife Enid and all three girls are always in my prayers.
These are just three things going on in my life that have nothing to do with my own battle. There are others I could add, and many, many of you, the readers are expericing similar events yourselves. I share these as a reminder of the how fragile life is and as a way to ask you slow down around the holidays next week and next month. Enjoy time with your family and friends...life is too short.
One of our prostate cancer brethren, Terence in Seattle, started chemo. His second treatment is in a few days and so far things are going well. Please understand that much like myself, Terence is dealing with bone tumors and pain, raising psa and other PCa related issues. His pain was excruciating and the good news is, he has seen some relief there is just a few weeks. I hope the future brings Terence more relief and many, many years of peace and happiness with Sheri and the grand kids.
In early October I added a post regarding our golf tournament (Lucky number 7). The gentleman to my right in the first photo is Bruce. Bruce and I have known each other since high school, well over thirty years. After a while, life took us separate ways, so it was great when Bruce drove in from St Louis to play in the tournament and have dinner with Mary and I. Two weeks ago Bruce went to his doctor to have a few things checked out. That appointment led to a triple by pass two days later. Bruce has children under ten years old, so that adds to the complexity of the recovery process. I wish Bruce and Lisa peace and joy as they follow their journey down the road to recovery.
I have another good friend Bill ,whom I've know since I used to kick his butt in first grade math flash card wars! He's to my left in the photo from this post (Golf 2010). It turns out last week Bill had his own heart scare. The incident happened while he was traveling to St Louis on business and required an overnight stay in the hospital and a battery of testing. Fortunately, the results were negative and his heart appears to be functioning very well. But it certainly created a stressful 36 hours of concern! Bill has three beautiful daughters. Bill, his wife Enid and all three girls are always in my prayers.
These are just three things going on in my life that have nothing to do with my own battle. There are others I could add, and many, many of you, the readers are expericing similar events yourselves. I share these as a reminder of the how fragile life is and as a way to ask you slow down around the holidays next week and next month. Enjoy time with your family and friends...life is too short.
November 03, 2011
Where are you going?
On my way to Boston, I obviously had a lot on my mind. This is what I wrote on the plane yesterday morning:
When traveling and someone asks, "Where are you going?", I simply want to reply, "Nowhere, I'm here for quite some time, if I have anything to say about it.". These last seven years have included so many ups and downs, twists and turns, I have become somewhat immune to emotions, the negativity, and times immune to the seriousness of the ramifications.
I just carry on until the next set back. Bad news? I just regroup, lay out a new plan or adjust the current one. The point is, I move forward at a slow steady pace. I'm not 100 percent sure what actually will happen three hours from now. My instincts tell me that today my medication will be increased, but who actually knows.
A day later, today I have a bit more to be optimistic about. Yes the dosage of Cabozantinib (XL-184) was increased (from 25 mg to 125 mg). I took my first dose of the increased quantity yesterday afternoon and my second this morning. Last night I slept better than I had in weeks. It might have been exhaustion, it might have been psychological based on a feeling of relief, having hope that the new dosage will be effective and I will be able to resume to a better quality of life with less pain and less fatigue. Whatever it was, it was great. I woke up this morning and realized I hadn't had in pain medication in twelve hours. That too was a first in several several weeks.
The doctor appointment fell right in the middle of my schedule for pain medications and I needed to have an empty stomach so I could take the first dose of the XL-184 while at the doctors office. Additionally, I had to wait nearly two hours for the new trial drugs to be delivered from the pharmacy. Consequently, I was four hours late taking the pain pills. I swear I could feel them working within 10 minutes as I rode the subway back to the airport. My flight back to Kansas City was direct but better than that, Mary and Brad were waiting to drive me home! That was the perfect way to finish a very long day.
My next trip to Boston is not for three weeks, in the mean time..... I'm not going anywhere!
October 30, 2011
Condition and recognition
I have spent most evenings over the past week trying to get the timing of Advil and Percocet down to a science. I haven't earned a masters degree yet. Some days and nights have been fine, with very little to no daytime pain and decent enough sleep. There have been days of heavy fatigue and nights of tossing and turning and what amounts to maybe 3-4 hours of good sleep. Sleep on these nights comes in fits and starts which in turn leads to fatigue the following day.
My return trip to Boston can not come soon enough! I will be back for my next appointment in Boston on Tuesday. We anticipate the doctor will request my dosage be increased and we are hopeful that the new dose will offer me relief from the pain and attack those tumors in my bones that are causing me discomfort.
On another note, you may remember this story from earlier this summer.
http://www.435southmag.com/recentposts/2011/10/14/the-buddy-system/
I received word earlier this week that the writer, Kimberly Winter Stern, has been recognized for the article. The High Plains Division of the American Cancer Society recognized her for excellence in journalism.
Here is the link, scroll down to the 'Magazine' catagory:
http://www.cancer.org/MyACS/HighPlainsHawaiiPacific/AreaHighlights/high-plains-media-awards-winners
Kimberly, I think I can speak for John when I say thank you for capturing the story in such a perfect way and for sharing in our passion for finding a cure for prostate cancer.
My return trip to Boston can not come soon enough! I will be back for my next appointment in Boston on Tuesday. We anticipate the doctor will request my dosage be increased and we are hopeful that the new dose will offer me relief from the pain and attack those tumors in my bones that are causing me discomfort.
On another note, you may remember this story from earlier this summer.
http://www.435southmag.com/recentposts/2011/10/14/the-buddy-system/
I received word earlier this week that the writer, Kimberly Winter Stern, has been recognized for the article. The High Plains Division of the American Cancer Society recognized her for excellence in journalism.
Here is the link, scroll down to the 'Magazine' catagory:
http://www.cancer.org/MyACS/HighPlainsHawaiiPacific/AreaHighlights/high-plains-media-awards-winners
Kimberly, I think I can speak for John when I say thank you for capturing the story in such a perfect way and for sharing in our passion for finding a cure for prostate cancer.
October 10, 2011
From the far corners
As I leave for my six week check up in Boston I can feel the strength of so many of my friends and family. I also feel the support from a distance. Recently I have received quite a few emails and blog comments from locations far, far away.
Previously I wrote about a young man from Uruguay who wrote me just days after his father passed. His kind words touched me very deeply and emotionally.
I have also quoted Ivan from Australia. He has become like an old pen pal, back before computers and email. I so look forward to his emails. His prose is beautiful, encouraging and truely from the heart.
Then there was a note from Naples, Italy. Raffaele, only 24 years old, who wrote to say how much enjoyment he and his family found in my blog. I was once again dumbfounded at the reach of this journal.
Most recently I exchanged messages with Melvyn from England. His words helped in ways I cannot express.
"I think it is harder for our loved ones and don't know how my wife copes. You have your disc golf and I have my horse - I do my thinking and a lot of praying whilst riding the quiet English countryside and thank the Lord for the blessings He has given me in life so far."
What a beautiful picture he painted for me as I anticipate the results of blood work and bone scans, to be riding a horse through the English countryside!
Previously I wrote about a young man from Uruguay who wrote me just days after his father passed. His kind words touched me very deeply and emotionally.
I have also quoted Ivan from Australia. He has become like an old pen pal, back before computers and email. I so look forward to his emails. His prose is beautiful, encouraging and truely from the heart.
Then there was a note from Naples, Italy. Raffaele, only 24 years old, who wrote to say how much enjoyment he and his family found in my blog. I was once again dumbfounded at the reach of this journal.
Most recently I exchanged messages with Melvyn from England. His words helped in ways I cannot express.
"I think it is harder for our loved ones and don't know how my wife copes. You have your disc golf and I have my horse - I do my thinking and a lot of praying whilst riding the quiet English countryside and thank the Lord for the blessings He has given me in life so far."
What a beautiful picture he painted for me as I anticipate the results of blood work and bone scans, to be riding a horse through the English countryside!
September 18, 2011
Focus, from another continent
In my mind I have been contemplating several variations of this post for a few weeks. I received a note from a friend and in it this person referred to me as a hero. At first I wanted to grab a keyboard and proclaim "I am no hero". For whatever reason, I just want to share, and hopefully benefit others with the my life experience. I don't think I can carry the weight of that label. This clearly was not their intention, but those four letters stuck with me.
Life got the best of me this week and between work, doctors appointments and family activites I was not able to take the time to sit down and address this topic. Good thing because today I received a wonderful note that put it all in focus. DG, a young man from Uruguay sent me the note below. I have included it here with his permission.
Dear David, I followed your site and fb for a couple of years because my dad have pc.
2 days ago he lost his fight, six wonderful years fighting shoulder with shoulder with a exceptional father.
I write this mail to say how much helped us yours histories, your knowledge and your courage.
Maybe i dont wrote you before because my english (with the years is making worst and worst) but I still keeping reading your post every day, sharing your happiness and sadness, and this was keeping me pushing and pushing until the end.
I had the lucky and pride of keep my dad in my arms during her last travel with mom,my brother,my wife and my little daughter (Her princess ) in our home.
Now is time to rest for dad and for us.
Please keep fighting, i will keep reading
I cried, seriously. Perhaps it's the rainy morning. Maybe it is recent news about PCa brethren facing tougher times ahead. Maybe it was the wonderful, complete day I had with Mary and Brad yesterday. What ever it was, his words touched me in a way I definitely needed at this time.
I also sit here and wonder why, two days after he lost his father, DG would write to me. Why? Maybe becasue this blog is more far-reaching and meaningful than I sometimes give it credit for. I am honored to use this medium to reach out to those touched by cancer. I'm just a guy with Prostate Cancer that, at the beginning of my journey, decided to share my battle with cancer publicly. If doing so reaches nearly all four corners of the world and I can bring just a little bit of peace to one man, one family, then we all are blessed.
DG, you and your family will continue to be in my thoughts and prayers.
I dedicate the following prayer to your Father:
Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen.
Life got the best of me this week and between work, doctors appointments and family activites I was not able to take the time to sit down and address this topic. Good thing because today I received a wonderful note that put it all in focus. DG, a young man from Uruguay sent me the note below. I have included it here with his permission.
Dear David, I followed your site and fb for a couple of years because my dad have pc.
2 days ago he lost his fight, six wonderful years fighting shoulder with shoulder with a exceptional father.
I write this mail to say how much helped us yours histories, your knowledge and your courage.
Maybe i dont wrote you before because my english (with the years is making worst and worst) but I still keeping reading your post every day, sharing your happiness and sadness, and this was keeping me pushing and pushing until the end.
I had the lucky and pride of keep my dad in my arms during her last travel with mom,my brother,my wife and my little daughter (Her princess ) in our home.
Now is time to rest for dad and for us.
Please keep fighting, i will keep reading
I cried, seriously. Perhaps it's the rainy morning. Maybe it is recent news about PCa brethren facing tougher times ahead. Maybe it was the wonderful, complete day I had with Mary and Brad yesterday. What ever it was, his words touched me in a way I definitely needed at this time.
I also sit here and wonder why, two days after he lost his father, DG would write to me. Why? Maybe becasue this blog is more far-reaching and meaningful than I sometimes give it credit for. I am honored to use this medium to reach out to those touched by cancer. I'm just a guy with Prostate Cancer that, at the beginning of my journey, decided to share my battle with cancer publicly. If doing so reaches nearly all four corners of the world and I can bring just a little bit of peace to one man, one family, then we all are blessed.
DG, you and your family will continue to be in my thoughts and prayers.
I dedicate the following prayer to your Father:
Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen.
September 02, 2011
The starting gun
On Tuesday I was up at 4:15am and out the door by 4:40am in order to get to Boston, MA for my 1:00pm appointment.
There is nothing eventful to report about the travel, a connection in Atlanta, on time arrival, 45 minutes on the bus/subway and I promptly walked into the doctor’s office.
Due to the nature of the clinical trial, the vampires required 9 vials of blood and a urine sample. The results of the blood test are required before the trial drug can be released. The lab was able to turn the blood test around in an hour. During that time, I met with the Nurse Practitioner and reviewed the blood test, CT and bone scan from August 2nd. There were no surprises in the blood work and CT scan; PSA was 440 (expected) and CT showed swollen lymph nodes in my lower abdomen (also known).
The bone scan on the other hand was, for the lack of a better term, frightening. I have seen and studied my bone scans since I had my first scan in February of 2005. This scan showed extensive areas of new tumors where there have never been tumors before. I was not surprised, with my PSA level being as high as it is for so long, what I saw was somewhat expected. That being said, seeing the image on the screen. actually looking at the cancerous tumors in black and white and acknowleging the fact that you are looking at yourself, it was rather shocking and a bit difficult to quickly accept.
- - Extensive areas in upper to lower mid spine (much more than before)
- - Left lower femur shows a rather large new spot
- - Right shoulder and collar bone show new areas of growth
- - Upper right ribs show quite a bit of new growth
- - Several small areas on the vertebrae between shoulders and base of skull.
These were the most concerning to me.
The good news is that several minutes after reviewing the scan, the clinical trial nurse brought in my first 21 pills for the clinical trial drug, Cabozatinib or XL-184. The trial I am enrolled in is the third Phase II trial of the drug. The purpose of this phase of the trial is to gauge the effectiveness responsiveness) of dosages. My dosage is 25mg. Aside from changes in the physical aches and pains I won’t know if the drug is working until new scans are taken on October 11th.
After leaving the hospital I walked around the neighborhood (Beacon Hill) briefly before heading back to the airport. I wish I had more time and will try to make a point to check out more of the neighborhood on future visits. My friend Jason was in town at the same time but was leaving a bit earlier than me. We had discussed trying to meet my for dinner but he called to say he was running late and was barely going to make his flight. An hour later, after going through security and eating something I was walking around the terminal killing time. Suddenly I felt a hand on my shoulder was quite shocked to turn around and see him standing there smiling! What a great way to finish a long and stressful trip! Jason - thank you for being there and being such a wonderful friend. We were brought into each other’s lives through fate and a hat, destiny can be a beautiful thing! When you look at the photo of Jason and myself, it’s hard to believe all of this is going on inside me. The irony of my life!
It’s Prostate Cancer Awareness month so please support the cause. You can do so in a number of ways; write your elected official and ask them to continue funding the much needed research, change your porch light to blue, Support any number of PC group, Encourage a loved one, friend or acquaintance to get tested. Most importantly, pray for all the men that are currently fighting and suffering from this dreadful disease!
August 26, 2011
Come On Irene!!
Not the 80's classic by Dexy's Midnight Runners, but the Hurricane!
I thought before whining about myself, I should add that I pray for all the people, businesses, animals, etc. that lie in her path.
Though it looks like she'll pass through Boston on Sunday, I hope the havoc is minimal and by Tuesday morning, all flights are on time and travel to and fro goes off without a hitch.
Regarding pain management, Advil is down to two every twelve to twenty-four hours. I also have only had to take pain pills to sleep twice in the last four days. Tuesday can't get here soon enough!
I thought before whining about myself, I should add that I pray for all the people, businesses, animals, etc. that lie in her path.
Though it looks like she'll pass through Boston on Sunday, I hope the havoc is minimal and by Tuesday morning, all flights are on time and travel to and fro goes off without a hitch.
Regarding pain management, Advil is down to two every twelve to twenty-four hours. I also have only had to take pain pills to sleep twice in the last four days. Tuesday can't get here soon enough!
August 11, 2011
In Like Flynn
Before the update, I was curious about the origin of the expression I used in the title, so I Googled it.
“The earliest known use of "in like Flynn" in print is in the December 1946 issue of American Speech. Penn State prof Ed Miller reported that students of his who had served in the army / air force during World War II used the expression to mean, "'Everything is OK.' In other words, the pilot is having no more trouble than Errol Flynn has in his cinematic feats."
Now, on with the show. It’s 100%, I’m in the Cabozantinib (XL-184) trial and I can start to take the pill on August 30th. Relieved? Of course we are, but it really won’t sink in until I have pills in hand and take the first dose! The travel will be a little taxing on us, but again, I can go round trip in one day, and so far it appears as though the flight will cost around $200 each trip. The subway goes from the airport to within 25 yards of the hospital so no ZipCar will be required. I hope the time on the ground allows me to see a little bit of Boston and perhaps coordinate trips with a few friends for dinner, etc. I’m really looking forward to the new chapter in the journey.
Tomorrow I will see my local Oncologist for my monthly check up and a few shots. I’m not expecting my PSA to be anything but be slightly higher. This is based on the fact that I will have been off Zytiga for 10 days. Though I had a stretch of 8-9 days without Advil or pain pills, I did have to start taking Advil again on Tuesday. I’m only having to take 3 Advil every 12 hours and am thankful it has not progressed further. As I stated before, the time between now and when I start to take the new meds on the 30th may be a challenge psychologically, but we'll get through it, and hope for a good response to the new treatment!
August 08, 2011
Back in the saddle again.
Tomorrow we hope to get the 'official' word about my acceptance in the Cabozantinib (XL-184) clinical trial. In the first week since I stopped taking some of my previous medications I can't tell any difference. If anything, I feel a little better.
I mention feeling a little better with a slight amount of hesitation. Although we received mixed opinions from the medical community, Mary and I are convinced that my recent bouts of pain are related to the two new drugs I started in June.
The only proof we have is the pattern of the pain I experienced both times I received the treatments. Five days after the injections I begin to have back pain. The severity and location move around from low to high and side to side. Sometimes it feels likes it's my ribs, then my back, etc. It lasts between seven to ten days following the injections and then I have days and days of 'normal' activity.
This past weekend was one of those 'normal' periods. I was even able to play disc golf on Sunday, and played pretty well considering I had not played in a month. I really miss playing twice every weekend but I'm not complaining, I'll take what I can get.
Three weeks and counting, I hope it flies by like summer did!
I mention feeling a little better with a slight amount of hesitation. Although we received mixed opinions from the medical community, Mary and I are convinced that my recent bouts of pain are related to the two new drugs I started in June.
The only proof we have is the pattern of the pain I experienced both times I received the treatments. Five days after the injections I begin to have back pain. The severity and location move around from low to high and side to side. Sometimes it feels likes it's my ribs, then my back, etc. It lasts between seven to ten days following the injections and then I have days and days of 'normal' activity.
This past weekend was one of those 'normal' periods. I was even able to play disc golf on Sunday, and played pretty well considering I had not played in a month. I really miss playing twice every weekend but I'm not complaining, I'll take what I can get.
Three weeks and counting, I hope it flies by like summer did!
July 31, 2011
My Neverland
This morning I watched 'Finding Neverland', the story of James Barrie who wrote Neverland (Peter Pan). Based on the crocodile tears, this one hit a wee bit close to home. I don't mind sharing that fact. Yes, I cry during a good, emotional movie. For those of you that have been around here for awhile, you know that I have been known to cry while reading a book! There was just something about the story, it is a great movie I would recommend to all.
Tears, and the emotions that bring them to life, are cleansing. To me they are a release for tension or stress and there are times in this battle when that release is critical. We have a lot ahead of us this August. It all begins in a few days with a trip to Boston. That trip will involve tests, waiting, meeting with the doctor, waiting and we hope, time for a little fun. This doctor appointment and clinical trial I am attempting to get into is perhaps THE most critical point in this journey.
With my PSA count remaining high and the increasing amount of pain I have been experiencing, it is very important that I change treatment plans now. Without this tria,l my alternative is chemotherapy and radiation. Since I did chemo back in 2008, I have the experience, it does not scare me. The issue is chemo did not provide much benefit. As for radiation, this would address the pain, but has it drawbacks. Those include compromising bone marrow and therefore making a chemo treatment less effective, fatigue, short term relief and more.
I just continue to pray this path I find my journey taking is the right one. Not because of the finanacial and travel impacts or the possible side effects, but because the trial offers so much more of a potential impact on the state of the disease than the chemo/radiation option.
I'll provide more details once we return from Boston.
Tears, and the emotions that bring them to life, are cleansing. To me they are a release for tension or stress and there are times in this battle when that release is critical. We have a lot ahead of us this August. It all begins in a few days with a trip to Boston. That trip will involve tests, waiting, meeting with the doctor, waiting and we hope, time for a little fun. This doctor appointment and clinical trial I am attempting to get into is perhaps THE most critical point in this journey.
With my PSA count remaining high and the increasing amount of pain I have been experiencing, it is very important that I change treatment plans now. Without this tria,l my alternative is chemotherapy and radiation. Since I did chemo back in 2008, I have the experience, it does not scare me. The issue is chemo did not provide much benefit. As for radiation, this would address the pain, but has it drawbacks. Those include compromising bone marrow and therefore making a chemo treatment less effective, fatigue, short term relief and more.
I just continue to pray this path I find my journey taking is the right one. Not because of the finanacial and travel impacts or the possible side effects, but because the trial offers so much more of a potential impact on the state of the disease than the chemo/radiation option.
I'll provide more details once we return from Boston.
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