When will I stop worrying? The answer is likely, never.
It is true, I have started the next step in the journey, but the way that this whole process evolves in my mind is a little tricky. As I go through this post I hope I don't leave you with the impression I am not grateful or that in any way I am not thankful for the opportunity that this new drug provides.
The next, and first measurement will be a PSA blood test in four weeks. In between I will have my potassium level and other markers measured but the key marker will be the stabilization of my PSA, and eventually the lowering of the PSA. As long as this continues every four weeks I will remain on Abiraterone indefinitely.
You may be saying, great that will make you so happy. Well on one hand yes it will, but on the other I will return to living my life in 28 day cycles. I would give practically anything to have 6 weeks, two months or more without having to worry about this disease. As I mentioned in my last, it's an emotional grind and yes, I should be cherishing this opportunity but not yet. I pray that it comes in time.
I was able to put it aside from time to time this past weekend. After spending Thursday night back in Kansas City I left for Los Angeles on Friday to help a friend with some business. There was a convention in LA that I agreed to help him with last minute.
We arrived on Friday around 2:00 pm and were pleased to see a convertible Mustang waiting at Avis. Though it was the color a blue Smurph would have envied, we didn't express any complaints. Our first appointment was about an hour south of LA so with the top down and the temperature a perfect 72, we hit 405 south.
It was around 4pm when we got back on the highway to LA and we began discussing how much we'd be willing to pay for Lakers tickets that night.We got a real bargain on StubHub, better yet, he had a connection that got us into the club level for the game. The Lakers ended up losing but it was a fun time and a good experience.
We spent Satruday at the trade show, hit Tommy's Burgers (I passed on the burger), drove up and down Rodeo Dr. and watched 'Due Date' before calling it a night. Sunday we grabbed some breakfast, returned the car and returned to LAX. [side note: back and forth to Atlanta and LA in one week, no one at the TSA came close to patting me down and the security personnel were all pleasant.] We spent about an hour in the terminal brain storming ideas for business and then back to the cold midwest with new stories forecasting a blizzard in the coming week. for Kansas City. It was a nice distraction and freat way to end a very stressful and hectic week. J, I owe you big time!
Today I had my monthly Oncologist visit and I received the standard shot and infusion. My PSA spiked but it was a different lab than last week and I'm now five days into the treatment. It's too early to tell if anything had changed so I'm going to mentally discard today's reading. It's the test on the February 24th that will hopefully start to indicate how things are going. Dr. A in Atlanta did attempt to set our expectations by explaining that a patient does not typically see a positive response for a month or two. We will do our best to have patience.
January 31, 2011
January 28, 2011
Birthday presents
On Tuesday Mary and I traveled to Atlanta. The purpose of this trip was to meet with a new doctor and be approved for a clinical trial that offers a drug that should help quell the beast. With the continued increase in my PSA, it was critical that we find a new treatment. The drug, Abiraterone, is on the verge of FDA approval.
Tuesday was unbelievably stressful and tiring. We had to get up at 4:45am in order to get ready and catch a 7am flight. The trip to Atlanta was non-eventful but when we landed it was raining. The rain continued all day and the gloominess hung over me like the large gray clouds that blocked the view of the Atlanta skyline. After getting a rental car and driving to the Buckhead area, we only had time for a quick lunch before heading over to the doctor's office.
Somehow our luck continues when it comes to finding pleasant, professional and accommodating medical support. Dr. A's staff was fantastic. We spent 30 minutes or so with the doctor followed by a trip to the hospital for tests. Dr. A has been involved with this specific drug throughout all stages of the clinical trial. He has seen excellent results from the majority of the men on the trial and very few complications. The primary side effects noted are low potassium and leg cramps. In order to monitor my health through this trial, I will be returning for blood tests and visits with the doctor every two weeks for the first 3 months and then once a month after that.
The remainder of Tuesday afternoon was spent at the hospital where I had both and an EKG and an echocardiogram. I wasn't familiar with the latter, but learned it is basically a sonogram of your heart. I was able to view the monitor and I must say it was pretty exciting to watch my heart valves open and close! At one point I could see all four chambers at once, quite amazing.
By the time we checked into the hotel and got to our room it was nearly 5pm. We took a few minutes to drop our things and headed off to dinner. Wouldn't you know it, we found one of our favorites, Houston's right down the road. We had a nice meal but the craziness of all the travel and the stress of waiting another 36 hours had caught up to me, I was exhausted.
We spent Wednesday working from the hotel, working out and swimming and then had dinner at a restaurant I had discovered a few years ago when I had to travel to Orlando on business, Seasons 52. They have a great grilled scallop dish that we both enjoyed and we were back in our room by 8:00pm.
Neither of us slept particularly well on Tuesday and Wednesday it was worse. Tossing and turning continued and we threw in the towel and got up a little after 6am. We arrived at the doctor at 9:30 and they were once again the epitome of efficiency. By 10am I had the trial drug in hand and was taking my first dose. A quick stop at their pharmacy for the Prednisone and we were on our way back to the airport.
I really despise airlines when they charge you to change flight. It cost $50 each for us to walk up to a kiosk, scan our boarding passes and use the on screen menu to change from the 4:10 to the 12:50 flight. $100 and not a single second of human intervention! Complaints aside, it was well worth it to get home three hours earlier on my birthday.
Perhaps I failed to mention that previously...yesterday I turned 48. As I look at those words on the screen in front of me I am taken back for a number of reasons. First, my how life flies by, 48! I also look at the header of this blog and think about all that has happened in the last 6 years. The highs, the lows, the ups, and the downs. The new friends I've made and cherish, the friends I made and lost, and those this disease has allowed me to reconnect with after so long. What a life I have led in such a short time.
Ahead lies more than a 49th, 50th and more. Birthdays are the milestones but everything that happens the other 364 days are a blessing. Take some time to slow down and enjoy them because once they are gone, you can't get them back.
At the end of the day I pray that this new drug is successful in taming my disease for months and perhaps years to come. I would like nothing more than to look forward to 12 years from now and be able to post, "Yesterday was my 60th birthday and Mary and I stayed at home, had a nice quiet dinner and shared a cupcake with one candle on it!"
Tuesday was unbelievably stressful and tiring. We had to get up at 4:45am in order to get ready and catch a 7am flight. The trip to Atlanta was non-eventful but when we landed it was raining. The rain continued all day and the gloominess hung over me like the large gray clouds that blocked the view of the Atlanta skyline. After getting a rental car and driving to the Buckhead area, we only had time for a quick lunch before heading over to the doctor's office.
Somehow our luck continues when it comes to finding pleasant, professional and accommodating medical support. Dr. A's staff was fantastic. We spent 30 minutes or so with the doctor followed by a trip to the hospital for tests. Dr. A has been involved with this specific drug throughout all stages of the clinical trial. He has seen excellent results from the majority of the men on the trial and very few complications. The primary side effects noted are low potassium and leg cramps. In order to monitor my health through this trial, I will be returning for blood tests and visits with the doctor every two weeks for the first 3 months and then once a month after that.
The remainder of Tuesday afternoon was spent at the hospital where I had both and an EKG and an echocardiogram. I wasn't familiar with the latter, but learned it is basically a sonogram of your heart. I was able to view the monitor and I must say it was pretty exciting to watch my heart valves open and close! At one point I could see all four chambers at once, quite amazing.
By the time we checked into the hotel and got to our room it was nearly 5pm. We took a few minutes to drop our things and headed off to dinner. Wouldn't you know it, we found one of our favorites, Houston's right down the road. We had a nice meal but the craziness of all the travel and the stress of waiting another 36 hours had caught up to me, I was exhausted.
We spent Wednesday working from the hotel, working out and swimming and then had dinner at a restaurant I had discovered a few years ago when I had to travel to Orlando on business, Seasons 52. They have a great grilled scallop dish that we both enjoyed and we were back in our room by 8:00pm.
Neither of us slept particularly well on Tuesday and Wednesday it was worse. Tossing and turning continued and we threw in the towel and got up a little after 6am. We arrived at the doctor at 9:30 and they were once again the epitome of efficiency. By 10am I had the trial drug in hand and was taking my first dose. A quick stop at their pharmacy for the Prednisone and we were on our way back to the airport.
I really despise airlines when they charge you to change flight. It cost $50 each for us to walk up to a kiosk, scan our boarding passes and use the on screen menu to change from the 4:10 to the 12:50 flight. $100 and not a single second of human intervention! Complaints aside, it was well worth it to get home three hours earlier on my birthday.
Perhaps I failed to mention that previously...yesterday I turned 48. As I look at those words on the screen in front of me I am taken back for a number of reasons. First, my how life flies by, 48! I also look at the header of this blog and think about all that has happened in the last 6 years. The highs, the lows, the ups, and the downs. The new friends I've made and cherish, the friends I made and lost, and those this disease has allowed me to reconnect with after so long. What a life I have led in such a short time.
Ahead lies more than a 49th, 50th and more. Birthdays are the milestones but everything that happens the other 364 days are a blessing. Take some time to slow down and enjoy them because once they are gone, you can't get them back.
At the end of the day I pray that this new drug is successful in taming my disease for months and perhaps years to come. I would like nothing more than to look forward to 12 years from now and be able to post, "Yesterday was my 60th birthday and Mary and I stayed at home, had a nice quiet dinner and shared a cupcake with one candle on it!"
January 24, 2011
Dealing with the grind
A friend asked the other day if Mary and I talk about what’s going on a lot. I explained that at home we are very open with Brad and that her and I talk as appointments near and as decisions need to be made, but we don’t talk about ‘what if’ much anymore.
As you can probably imagine that topic usually leads to tears. I think the last time I had a real good cry about this might have been three or four years ago. I'm not afraid to have the discussion and as a matter of fact a good cry is very cleansing. We just choose to focus our energy on beating the disease and don't dwell on 'what if'.
It’s not that we live in denial. We have just learned to live in the now and we always try to remain positive. Thinking about death, and the end, and what happens when we run out of options is just not in our repertoire. There are far too many options that still lie ahead of us. None of them offer a cure, but they each offer time. Add them all up and who really know how long this can go on?
I'd be leaving something out if I didn't say that it all weighs heavily on my mind. As I mentioned in my last entry, we have a new normal. I don't care for it much at times, but for the most part, life goes on in some 'normal' way.
This is a big week in this journey. It reminds me somewhat of the days and weeks that led up to chemotherapy back in 2008. I am a bit nervous, certainly anxious, and will be very happy when this week reaches a conclusion.
Extra prayers to Brian and Kim in New Zealand tonight. Brian is in a similar stage as me and had to be taken to the hospital by ambulance. His pain had reached a point that he couldn't drive himself.
This prayer is dedicated to Brian:
As you can probably imagine that topic usually leads to tears. I think the last time I had a real good cry about this might have been three or four years ago. I'm not afraid to have the discussion and as a matter of fact a good cry is very cleansing. We just choose to focus our energy on beating the disease and don't dwell on 'what if'.
It’s not that we live in denial. We have just learned to live in the now and we always try to remain positive. Thinking about death, and the end, and what happens when we run out of options is just not in our repertoire. There are far too many options that still lie ahead of us. None of them offer a cure, but they each offer time. Add them all up and who really know how long this can go on?
I'd be leaving something out if I didn't say that it all weighs heavily on my mind. As I mentioned in my last entry, we have a new normal. I don't care for it much at times, but for the most part, life goes on in some 'normal' way.
This is a big week in this journey. It reminds me somewhat of the days and weeks that led up to chemotherapy back in 2008. I am a bit nervous, certainly anxious, and will be very happy when this week reaches a conclusion.
Extra prayers to Brian and Kim in New Zealand tonight. Brian is in a similar stage as me and had to be taken to the hospital by ambulance. His pain had reached a point that he couldn't drive himself.
This prayer is dedicated to Brian:
Prayer to Saint Peregrine ~ Patron Saint to cancer patients
O great St. Peregrine,
you have been called "The Mighty,"
"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 the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)
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.
you have been called "The Mighty,"
"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 the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)
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 21, 2011
My blessings are always counted
Oh, what a lucky man he was is.
That’s a line from an old 1970’s rock group, Emerson, Lake and Palmer.
It just reminds me of how lucky and blessed I am.
As next week nears and we take the next major step in this journey I find myself unbelievably thankful.
My life is surrounded by a compassionate family, wonderful friends, and the support of my boss, insurance
company and more. (the latter might seem strange to include but as opposed to some horror stories,
my insurance experience has been very smooth).
The past six years have flown by. That might be hard to imagine, but it’s true. At the same time, life has changed so much that I forgot what it was like before, when things were"normal". Normal left us so long ago, but that’s not a bad thing. We have settled into this medical circus and it has become our normal. Believe it or not, I’m OK with this.
Finally, please send your positive thoughts and prayers to all my PCa brethren out there....
Art G
Bob E
Brian W
Bruce L
Chuck M
Dan J
Dan Z
Dom M
Don T
Eric S
Greg J
Jay D
Joel N
John A
John H
John S
Kiwi Brian
Ludwick
Mark H
Merle
Mike M
Scott G
Terrance
Terry H
Tom T
Tony C
Walt W
That’s a line from an old 1970’s rock group, Emerson, Lake and Palmer.
It just reminds me of how lucky and blessed I am.
As next week nears and we take the next major step in this journey I find myself unbelievably thankful.
My life is surrounded by a compassionate family, wonderful friends, and the support of my boss, insurance
company and more. (the latter might seem strange to include but as opposed to some horror stories,
my insurance experience has been very smooth).
The past six years have flown by. That might be hard to imagine, but it’s true. At the same time, life has changed so much that I forgot what it was like before, when things were"normal". Normal left us so long ago, but that’s not a bad thing. We have settled into this medical circus and it has become our normal. Believe it or not, I’m OK with this.
Finally, please send your positive thoughts and prayers to all my PCa brethren out there....
Art G
Bob E
Brian W
Bruce L
Chuck M
Dan J
Dan Z
Dom M
Don T
Eric S
Greg J
Jay D
Joel N
John A
John H
John S
Kiwi Brian
Ludwick
Mark H
Merle
Mike M
Scott G
Terrance
Terry H
Tom T
Tony C
Walt W
January 18, 2011
I am the underdog, and I'm still here
On one of my recent music journeys I was really touched by this song by the band Spoon.
I don't fear the underdog, I AM the underdog!
It's the tempo and the music, not the lyrics.
I don't fear the underdog, I AM the underdog!
~~~~~~~~~~~
January 12, 2011
It's a good news, bad news, more news story
Good news I got into the Abiraterone clinical trial (assuming my EKG is normal). Also, due to an awesome clinical trial manager, the plan is to meet with the doctor, have blood work done, meet with the clinical trial nurse and have the EKG on day one. Then two days later, assuming all tests are within range, I'll meet with the doctor and begin taking the medication. This will alleviate a return trip 4 or 5 days later.
The bad news is I am going to be traveling to Atlanta on a bi-weekly basis until a site closer to home opens up.
There are rumors of a location in Omaha (3 hour drive) or even at KU Cancer Center opening soon, but based on experience, 'soon' could range from from forever to never. I will remain positive, as always.
The more news portion is that after the initial trip I can fly back and forth to Atlanta on the same day and direct from KC! I'll scout it out but from the Google map I might be able to take the MARTA to within a mile or two of the doctor's office, catch a cab, have the appointment and then do it all in reverse. So in one day I will leave Kansas City bright and early and be back home by 10pm. So the logistics may be a bit of a challenge, but most important, we are hopeful that I will be able to receive the treatment that will get the cancer under control and my PSA will take a turn in the right direction.
The bad news is I am going to be traveling to Atlanta on a bi-weekly basis until a site closer to home opens up.
There are rumors of a location in Omaha (3 hour drive) or even at KU Cancer Center opening soon, but based on experience, 'soon' could range from from forever to never. I will remain positive, as always.
The more news portion is that after the initial trip I can fly back and forth to Atlanta on the same day and direct from KC! I'll scout it out but from the Google map I might be able to take the MARTA to within a mile or two of the doctor's office, catch a cab, have the appointment and then do it all in reverse. So in one day I will leave Kansas City bright and early and be back home by 10pm. So the logistics may be a bit of a challenge, but most important, we are hopeful that I will be able to receive the treatment that will get the cancer under control and my PSA will take a turn in the right direction.
January 10, 2011
Without details
No details yet but as of now I am scheduled to meet with the doctor in Atlanta on the 25th. I have asked to move that up, but the trial nurse was out of the office on Friday and snowed in today due to a storm in Atlanta.
Last Tuesday and Wednesday I was experiencing a lot of fatigue and some mild discomfort/pain. I hate to even use the word pain, but never the less, in both cases two Advil took care of things for 24 hours. Since Thursday I haven't had to take anything.
I should know more tomorrow and will post updates after I get all details.
Last Tuesday and Wednesday I was experiencing a lot of fatigue and some mild discomfort/pain. I hate to even use the word pain, but never the less, in both cases two Advil took care of things for 24 hours. Since Thursday I haven't had to take anything.
I should know more tomorrow and will post updates after I get all details.
January 05, 2011
Oh, Atlanta!
I don't have for a lot of details yet, but want to share the update with you.
My Oncologist was able to get the contact information for the trial site in Atlanta. I left a message,it was returned, we spoke, exchanged emails, I sent some basic information and should hear from the scheduling nurse tomorrow.
Whew, feeling much better mentally today than yesterday.
The study nurse was quite pleasant and provided more information than I expected to
obtain. If everything works out, we'll go to Atlanta next week to meet the doctor, study nurse, have multiple blood tests, an EKG and other various required tests. This might require an overnight stay. The following week, assuming everything checks out, I will start the trial and receive the medication.
Per the protocol outlined for this trial, every fourteen days I will have to return for the first three months. Then monthly there after. This is a lot of travel, but there are a few positives, direct flights and I should be able to fly back and forth in the same day for trips when I am just going for a blood test. Most importantly, we believe this is the treatment that will get the pc under control!
Think positive that this all works out!
My Oncologist was able to get the contact information for the trial site in Atlanta. I left a message,it was returned, we spoke, exchanged emails, I sent some basic information and should hear from the scheduling nurse tomorrow.
Whew, feeling much better mentally today than yesterday.
The study nurse was quite pleasant and provided more information than I expected to
obtain. If everything works out, we'll go to Atlanta next week to meet the doctor, study nurse, have multiple blood tests, an EKG and other various required tests. This might require an overnight stay. The following week, assuming everything checks out, I will start the trial and receive the medication.
Per the protocol outlined for this trial, every fourteen days I will have to return for the first three months. Then monthly there after. This is a lot of travel, but there are a few positives, direct flights and I should be able to fly back and forth in the same day for trips when I am just going for a blood test. Most importantly, we believe this is the treatment that will get the pc under control!
Think positive that this all works out!
January 04, 2011
What up with that?
The irony of the title of this post is uncanny. I wrote the first half at 1pm today. Tonight's update is below!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My blood test from yesterday confirmed what I suspected, my PSA is increasing rapidly. It jumped from 81 on Dec 6th to 142 yesterday.
Due to the increase from October to December we had already begun our (My Oncologist, Mary and myself) attempt to gain access to one of three options; XL 184, Abiraterone or Provenge. These are listed in order of our preference.
- XL 184; I am not eligible for the current trial as it requires organ involvement. There is a new trial that is to open at any time that removes this requiremen,t but waiting is not really an option.
- Abiraterone; the good news is more and more sites are being added to Open Label Phase III Trial. The bad news is none are available in the Midwest. All of my paperwork has been sent to a location in Los Angeles, now we wait and see.
- Provenge; because this is not going to focus on reducing my PSA (according to what I have read) we are pursuing this as a secondary option. A letter of medical necessity was sent to UnitedHealthcare in mid-December, they have 30 days to reply.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~So this evening I get an email from the trial site in Los Angeles and now it turns out that their site is full. I wish they would have told me that weeks ago! Mary talked with the site coordinator as recently as Thursday, and there was no mention of full capacity being an issue. Discussion was clarifying that Monday's blood tests would be forwarded asap. I am frustrated beyond imagination. Time is of the essence. We are already scrambling to pursue access in either Atlanta, New Orleans or Palm Beach, FL. More to follow as we find things out!
January 02, 2011
New Year, new direction
Tomorrow is my 28 day appointment with my Oncologist. Due to the holidays, time flew by and I really find it hard to believe it is time to return to the cancer center.
I'm not sure what to expect with my PSA score. Regardless of what the results will be, we have to make a decision this week regarding the next treatment. We are still pursuing Provenge in New Jersey as well as Abiraterone in Los Angeles. Even though it will require a fair amount of travel, we are leaning towards Abiraterone. The reason we are favoring Abiraterone is that we believe I will have a much better chance of reducing my PSA and that is what we need to focus on at this point. This is not to rule out Provenge or to even say we don't do both. I'm not sure that doing both simultaneously is even possible, but you never know.
The holidays were great. We saw a lot of family and enjoyed each other's company. I think subconsciously we may be trying to store up the energy required for what lies ahead. This is a very brief update, more details over the next few days.
I'm not sure what to expect with my PSA score. Regardless of what the results will be, we have to make a decision this week regarding the next treatment. We are still pursuing Provenge in New Jersey as well as Abiraterone in Los Angeles. Even though it will require a fair amount of travel, we are leaning towards Abiraterone. The reason we are favoring Abiraterone is that we believe I will have a much better chance of reducing my PSA and that is what we need to focus on at this point. This is not to rule out Provenge or to even say we don't do both. I'm not sure that doing both simultaneously is even possible, but you never know.
The holidays were great. We saw a lot of family and enjoyed each other's company. I think subconsciously we may be trying to store up the energy required for what lies ahead. This is a very brief update, more details over the next few days.
Subscribe to:
Posts (Atom)