Kansas City Hospice House, Room #6, Friday, October 5, 2012, 2:15 PM
As I sit at my husband's bedside, I contemplate who the man David Emerson is. The man that I have shared half my life with. A man who frequently completed my sentences and I his. We often laughed at our ability to read each other's minds. Always on the same wavelength. It is a wonderful gift to have a connection with someone like that in your lifetime.
So who was David Emerson? He was a kind, patient, generous man, never judgemental or pretentious. He worked hard for his accomplishments and was proud of them. He loved sports, both as a participant, and as a fan. He loved to travel. He loved a wide variety of music and often found comfort through his interpretations. He loved technology. He loved the change of seasons. First and foremost, he loved his family and friends.
He was a man of faith. The greatest testament to his faith was the example he set as a husband, father, son, nephew, brother, uncle, great uncle, friend and confidante to many. Another amazing example of David's faith was the way he chose to accept his advanced prostate cancer diagnosis. He turned to God and tried to understand the purpose of this circumstance. He valiently fought not only his personal battle, but chose to pursue the battle on behalf of men fighting the disease, as well as all men who had the potential to be at risk. He was passionate about sharing his knowledge and the raw emotions of his personal experience.
Through the blog, David was able to reach out to the many touched by prostate cancer all over the world. He always appreciated the comments he received from his posts. He made good friends through this medium as well. David was an inspiration, a hero, a kind, loving, genuine spirit. He created a legacy that his family and friends take great pride in. The world is a better place for having had David Emerson a part of it. He will be greatly missed. God bless you David.
****************************************************************************
A Memorial Mass is planned for Wednesday, October 10, 2012 at 2:00 PM at
St. Michael the Archangel Church, 14201 Nall Avenue Leawood, KS 66223
A reception to celebrate David's life will immediately follow in Fr. Porter Hall.
October 06, 2012
October 02, 2012
A Long and Winding Road
As David and I are sitting in room 4224 at KU Medical Center, we are discussing the long and winding road that has been our journey in the battle against advanced prostate cancer. The last 12 months have undoubtedly been the steepest, most challenging terrain that we have endured.
David has been in the hospital since Thursday, September 20th. Liquid that was accumulating around his left lung was causing severe respiratory distress. He had over a liter of fluid drained, and in 4 days, had to have yet another liter removed. Anticipating this could be an on-going issue, we had a catheter placed below his left breast that allows us to drain the fluid as needed. After numerous tests, scans, xrays, etc. we were told that cancerous tumors have spread throughout his chest. These tumors are a main cause of the edema that he has been battling for months. The tumors are putting pressure on organs and his lymphatic system, which explains the fluid retention. Due to the strenuous testing schedule David has followed this past week, he has been reduced to ice chips. A swallow study revealed that due a combination of the advancement of the cancer and the physical weakness of his body from not being able to eat this past week, he is at risk for aspirating or developing pnemonia, if he swallows and the food/drink trails down his air pipe into his lungs. We have been trying to do tongue and throat exercises to strenghten the muscles, hoping that he will begin to start eating thickened liquids and soft solids. We stopped the MDV3100 regimen and were considering a chemo treatment. After careful consideration, we decided that the risks of the treatment would far outweigh any potential benefit.
We are prepared to make a transition to a new level of care at the Kansas City Hospice House. For reference follow this link to see the site, which contains a virtual tour as well, www.kansascityhospice.org. The Hospice House is a wonderful facility that was designed to provide patients and their families comfort and medical attention once they decide not to pursue further treatment for their disease. While this was a decision we did not want to have to make, we are comfortable that it is the right choice for our family. We would like to thank everyone for the outpouring of love and support that we have received over these very difficult days and ask for your continued prayers that David may continue to be comfortable and that we may spend many more days together.
David has been in the hospital since Thursday, September 20th. Liquid that was accumulating around his left lung was causing severe respiratory distress. He had over a liter of fluid drained, and in 4 days, had to have yet another liter removed. Anticipating this could be an on-going issue, we had a catheter placed below his left breast that allows us to drain the fluid as needed. After numerous tests, scans, xrays, etc. we were told that cancerous tumors have spread throughout his chest. These tumors are a main cause of the edema that he has been battling for months. The tumors are putting pressure on organs and his lymphatic system, which explains the fluid retention. Due to the strenuous testing schedule David has followed this past week, he has been reduced to ice chips. A swallow study revealed that due a combination of the advancement of the cancer and the physical weakness of his body from not being able to eat this past week, he is at risk for aspirating or developing pnemonia, if he swallows and the food/drink trails down his air pipe into his lungs. We have been trying to do tongue and throat exercises to strenghten the muscles, hoping that he will begin to start eating thickened liquids and soft solids. We stopped the MDV3100 regimen and were considering a chemo treatment. After careful consideration, we decided that the risks of the treatment would far outweigh any potential benefit.
We are prepared to make a transition to a new level of care at the Kansas City Hospice House. For reference follow this link to see the site, which contains a virtual tour as well, www.kansascityhospice.org. The Hospice House is a wonderful facility that was designed to provide patients and their families comfort and medical attention once they decide not to pursue further treatment for their disease. While this was a decision we did not want to have to make, we are comfortable that it is the right choice for our family. We would like to thank everyone for the outpouring of love and support that we have received over these very difficult days and ask for your continued prayers that David may continue to be comfortable and that we may spend many more days together.
August 22, 2012
Four is my magical number?
Yesterday morning Mary and I were up early and on the road headed to Lincoln, NE. The purpose of our trip was to complete the enrollment for my fourth clinical trial, MDV3100. The drive was just over three hours. The travel was sure easier to look forward to than the planes, trains and automobiles that I have had to deal with in the past to reach the destination of the trial at hand.
In the days leading up to the trip I was slightly apprehensive because I am still dealing with an unbalanced equilibrium. Sitting in a car is better than walking, but not as comfortable as sitting in my chair reading or watching television. I tried not to focus on this and just loaded up on newspapers, magazines and anything I could load on my iPad. It seemed to help becasue the drive passed by faster than either of us expected. This was probably due to the anticipation we were both experiencing as we drove towards the destination that offered a new treatment, that offers us new hope.
I was a good fit for the trial inclusion criteria, but having been through this before, you just never know what could pop up on a test etc. and disqualify you for the trial. Upon arriving, the staff offered us a warm welcome and were prepared to begin the preliminary tests which included a blood draw and an EKG. We spent approximately thirty minutes with the doctor. He was very knowledgeable about prostate cancer and obviously spent time reviewing my case, as he was familiar the the series of treatments and procedures that I have endured over the last seven plus years.
The worst part of the day was the fact that we had to wait two and half hours after meeting with the doctor for the blood test results. So why all smiles in the picture? It's because what you can't see is the big vial of pills in my other hand! This picture was taken in the parking lot shortly after I was approved for the trial.
So now we wait. Tonight I took dose number two. We are not sure how long before we see any measurable result,s but mid-September is our next trip to Lincoln. We remain hopeful that we will see positive results with this new treatment and that it will enable us to transition into some degree of normalcy. In the meantime, we are going to pursue a consultation with an ENT specialist to try to determine what is the cause of my issues with balance. Fortunately, the results of the brain scan and spinal tap were negative, so we are comfortable that it is not caused from any cancerous growths. It is greatly impairing my mobility, so we have to determine the root cause so that it can be treated. Taking it one day at a time!
August 17, 2012
More challenges
I'm not sure where to start....
Just when things seemed to be getting a little better last week, on Friday things once again changed. The only way I have been able to describe the change is my equilibrium is off. If I remain seated to read, watch TV or use the computer, things are pretty normal. When I get up and try to walk, I am not very stable on my feet. It's not dizzy, more a feeling of being unbalanced. It applies to standing up, sitting up or moving my head. Yes, it is limiting me just a bit.
I made it through the weekend and on Monday I had my monthly oncologist appointment. After going through a few tests in the exam room, Dr. V ordered an MRI of my head and upper spine. It was all clear. He sent us home with two prescriptions to try to treat the symptom, even though we did not know the source, but after a few days, there was no relief.
Tuesday, we went to the Medical Center and I had my kidney stents replaced. It is hard to believe that three months have passed. The procedure went very smoothly. The surgeon reported that everything looked clear and he suggested that based on the condition of the stents that were removed, we can wait 4 months before we have to go through this procedure again. Obviously, I don't want to go through this any more frequently than I have to, so this was good news.
Today we went back to the hospital for a spinal tap. Dr. V wants to make sure the cancer has not spread to my spinal fluid (extremely rare). Right now this is about all we know. We don't fully understand what all of the possible sources of this new symptom are. We are just hopeful that it is something that will be easily treatable.
In addition to fighting this new issue, I am still in the battle to get the prostate cancer under control. My PSA is now up to 1,200. Given my last visit to the hospital with a blood infection, we are not ready to start chemo again. We are anxious to start a clinical trial for MDV3100. It is a treatment that we have been tracking for a while. Logistically, the closest medical facility offering this trial is in Lincoln, Nebraska. It will be a 3 to 4 hour drive each way, but at least it does not require a plane ride to get there.
The last week has been exhausting for our family, but we continue to be optimistic and are hopeful that we will find the right treatment that will allow me to get stronger and move towards a more stable daily regimen.
Just when things seemed to be getting a little better last week, on Friday things once again changed. The only way I have been able to describe the change is my equilibrium is off. If I remain seated to read, watch TV or use the computer, things are pretty normal. When I get up and try to walk, I am not very stable on my feet. It's not dizzy, more a feeling of being unbalanced. It applies to standing up, sitting up or moving my head. Yes, it is limiting me just a bit.
I made it through the weekend and on Monday I had my monthly oncologist appointment. After going through a few tests in the exam room, Dr. V ordered an MRI of my head and upper spine. It was all clear. He sent us home with two prescriptions to try to treat the symptom, even though we did not know the source, but after a few days, there was no relief.
Tuesday, we went to the Medical Center and I had my kidney stents replaced. It is hard to believe that three months have passed. The procedure went very smoothly. The surgeon reported that everything looked clear and he suggested that based on the condition of the stents that were removed, we can wait 4 months before we have to go through this procedure again. Obviously, I don't want to go through this any more frequently than I have to, so this was good news.
Today we went back to the hospital for a spinal tap. Dr. V wants to make sure the cancer has not spread to my spinal fluid (extremely rare). Right now this is about all we know. We don't fully understand what all of the possible sources of this new symptom are. We are just hopeful that it is something that will be easily treatable.
In addition to fighting this new issue, I am still in the battle to get the prostate cancer under control. My PSA is now up to 1,200. Given my last visit to the hospital with a blood infection, we are not ready to start chemo again. We are anxious to start a clinical trial for MDV3100. It is a treatment that we have been tracking for a while. Logistically, the closest medical facility offering this trial is in Lincoln, Nebraska. It will be a 3 to 4 hour drive each way, but at least it does not require a plane ride to get there.
The last week has been exhausting for our family, but we continue to be optimistic and are hopeful that we will find the right treatment that will allow me to get stronger and move towards a more stable daily regimen.
August 01, 2012
There's no place like home!
After ten days in the hospital ,I was released and returned home late Monday afternoon.
I have to admit, I was a bit apprehensive to leave this time. Yes, there is nothing better than being home, but after everything I was treated for, I felt secure that I was being taken care of and if something else were to go wrong, I was confident that my medical team was there to take care of me. There were so many medical issues, that it became overwhelming for me mentally as well as physically. The staff on the Oncology floor at KU Med Center is top notch!
After two days, we are settling in to a bit of a routine, but I have a long road to recovery. What became obvious real fast was how quickly a week in the hospital can drain one of strength. I had a visit from a physical therapist yesterday and have already begun to slowly work on some light exercises. Mary and I were reassurred after she tested my strength and balance. She indicated that I was stronger than she expected me to be. I hope to work towards my morning walks with Mary up to the end of our street, and hopefully further.
The rest of this week, as well as the next, we will focus on recovery. After that we will meet with my oncologist on the 13th to determine what treatment plan I begin and when I begin. Also, we will be preparing for my scheduled procedure to have my stents replaced on August 14th. Yes, three months have already passed.
The road ahead is sure to a rough one, but I have Mary at my side, and God leading the way. It won't be easy, but neither have many, many parts of this journey battling prostate cancer. I would like to express my sincere appreciation to my brother and sister in law for their vigilant support for all of us during a very difficult week. Also, I'd like to thank you all for the encouragement and support that you have shared with us over this last week, as well as over the past 7+ years. The battle is not over!
I have to admit, I was a bit apprehensive to leave this time. Yes, there is nothing better than being home, but after everything I was treated for, I felt secure that I was being taken care of and if something else were to go wrong, I was confident that my medical team was there to take care of me. There were so many medical issues, that it became overwhelming for me mentally as well as physically. The staff on the Oncology floor at KU Med Center is top notch!
After two days, we are settling in to a bit of a routine, but I have a long road to recovery. What became obvious real fast was how quickly a week in the hospital can drain one of strength. I had a visit from a physical therapist yesterday and have already begun to slowly work on some light exercises. Mary and I were reassurred after she tested my strength and balance. She indicated that I was stronger than she expected me to be. I hope to work towards my morning walks with Mary up to the end of our street, and hopefully further.
The rest of this week, as well as the next, we will focus on recovery. After that we will meet with my oncologist on the 13th to determine what treatment plan I begin and when I begin. Also, we will be preparing for my scheduled procedure to have my stents replaced on August 14th. Yes, three months have already passed.
The road ahead is sure to a rough one, but I have Mary at my side, and God leading the way. It won't be easy, but neither have many, many parts of this journey battling prostate cancer. I would like to express my sincere appreciation to my brother and sister in law for their vigilant support for all of us during a very difficult week. Also, I'd like to thank you all for the encouragement and support that you have shared with us over this last week, as well as over the past 7+ years. The battle is not over!
July 27, 2012
The Trend Continues....
I (Mary) am writing this post on behalf of David. We wanted to provide an update regarding the events of the past week.
The highlight of the week was the opportunity to host the third annual. 'FLHW Warrior Combine'. It was a beautiful July morning. We had a wonderful group of men participate, both regarding athleticism, as well as camaraderie. Money was raised to support advanced prostate cancer treatment research and additionally, we were able to promote the importance of early detection in beating the battle against prostate cancer. We had an exceptional newsteam join us who helped us to promote our message. If at least one man saw the story and decided to go get tested, then it was all well worth it. Below is the link to the story. It also contains the video:
http://fox4kc.com/2012/07/21/warrior-combine-raises-awareness-about-prostate-cancer/
Many thanks to Jason for selecting FLHW to be the recipient charity for this wonderful event.
Also, our sincere appreciation goes out to those who sponsored the event, as well as to the volunteers and those that came out to cheer the warriors on, including the Chiefs Cheerleaders that dedicated their time to support our cause. The event seems to get better with each passing year, and is fun for all! David was able to watch the event from the side lines. He enjoyed visiting with friends and family and watching the competition. The enthusiasm and energy of those participating was infectious.
The final event was completed, the scores were tallied and the warrior champions were announced. We were able to clean up and head home by 11:00 AM, just as the summer temps started to climb.
David's sisters were in town for a visit, so we all went home, had a little brunch and decided it was time for a nap after an early and hectic morning. Later that afternoon, David commented that he was cold. I walked toward him and realized he was shivering. Touching his forehead, he was burning up. I immediately took his temperature and it was 104 degrees. Since a fever is one of the warning signs for infection when on chemotherapy, I immediately called the oncologist and David was soon admitted to the hospital. This is where our trend continues, April, May and June all included hospital visits, and unfortunately, July did not pass by without another trip to KU Med Center. After a lot of testing, it was determined David had an infection that settled as a urinary tract infection and then spread to his blood. Additionally, his blood pressure was extremely low coupled with a very high heart rate. Sunday morning, he was moved to ICU. He was not responding to the initial antibiotics that he was given and the doctors were unable to get his blood pressure back to a normal level. Finally, Monday evening progress was made and his blood pressure was improving. Late Tuesday afternoon he was moved back down to the oncology floor. His progress is slow and steady. He will be in the hospital until at least Monday. Each and every member of the staff that has assisted us during this visit have been amazing. Their compassion and positive attitudes while caring for David have been a source of comfort for both David as well as for our family. David's spirits are good and we look forward to him returning home early next week. As always, we will be taking it one day at a time.
The highlight of the week was the opportunity to host the third annual. 'FLHW Warrior Combine'. It was a beautiful July morning. We had a wonderful group of men participate, both regarding athleticism, as well as camaraderie. Money was raised to support advanced prostate cancer treatment research and additionally, we were able to promote the importance of early detection in beating the battle against prostate cancer. We had an exceptional newsteam join us who helped us to promote our message. If at least one man saw the story and decided to go get tested, then it was all well worth it. Below is the link to the story. It also contains the video:
http://fox4kc.com/2012/07/21/warrior-combine-raises-awareness-about-prostate-cancer/
Many thanks to Jason for selecting FLHW to be the recipient charity for this wonderful event.
Also, our sincere appreciation goes out to those who sponsored the event, as well as to the volunteers and those that came out to cheer the warriors on, including the Chiefs Cheerleaders that dedicated their time to support our cause. The event seems to get better with each passing year, and is fun for all! David was able to watch the event from the side lines. He enjoyed visiting with friends and family and watching the competition. The enthusiasm and energy of those participating was infectious.
The final event was completed, the scores were tallied and the warrior champions were announced. We were able to clean up and head home by 11:00 AM, just as the summer temps started to climb.
David's sisters were in town for a visit, so we all went home, had a little brunch and decided it was time for a nap after an early and hectic morning. Later that afternoon, David commented that he was cold. I walked toward him and realized he was shivering. Touching his forehead, he was burning up. I immediately took his temperature and it was 104 degrees. Since a fever is one of the warning signs for infection when on chemotherapy, I immediately called the oncologist and David was soon admitted to the hospital. This is where our trend continues, April, May and June all included hospital visits, and unfortunately, July did not pass by without another trip to KU Med Center. After a lot of testing, it was determined David had an infection that settled as a urinary tract infection and then spread to his blood. Additionally, his blood pressure was extremely low coupled with a very high heart rate. Sunday morning, he was moved to ICU. He was not responding to the initial antibiotics that he was given and the doctors were unable to get his blood pressure back to a normal level. Finally, Monday evening progress was made and his blood pressure was improving. Late Tuesday afternoon he was moved back down to the oncology floor. His progress is slow and steady. He will be in the hospital until at least Monday. Each and every member of the staff that has assisted us during this visit have been amazing. Their compassion and positive attitudes while caring for David have been a source of comfort for both David as well as for our family. David's spirits are good and we look forward to him returning home early next week. As always, we will be taking it one day at a time.
July 17, 2012
Cycle 1.... Complete
Yesterday I finished my first cycle (three treatments, one each on the past three Mondays). Now I have a break next Monday and I hope to spend the time recovering with the week off. I am happy to report I have very few side effects.
Fatigue has been the main issue and it comes sporadically. Some days it's in the morning, but most days it seems to come late in the evenings, after dinner. For the most part it feels like a real bad flu without the fever. Last night after treatment I was watching TV in bed by 6:30PM and fighting a nap. The reason I was fighting the nap was so that I would be able to get sleep later on in the middle of the night. For the most part I was able to stay awake, except for a 45 minute nap around 8pm. I was able to go to bed at a somewhat normal bedtime, I finally turned off the TV a little after 11pm. Except for one bathroom break and less than an hour of television at 2am, I slept great.
Today as I write this, it is already early evening and not only have made it through the day without a nap, I am in no need of sleep at this time. Mary and I might even get to watch a movie tonight! It doesn't take much for me to remind myself how much worse things could be. I could be sleeping constantly, dealing with other known side effects, or be back to where I was several weeks ago and be in need of far more pain meds than I am currently on.
One change we did agree to with the doctor yesterday was to adjust both my pain meds and steroid down slightly. The first change was to reduce the steroid (Dexamethasone) by half. I started yesterday afternoon and we'll give it a few days to make sure we don't cause any pain to resurface. If all goes well with reducing the steroid, in a week or so we will pursue further reduction of my pain medication. Mary has helped me to slowly transition the dose of my pain medication so that I no longer take any break through med and have stretched out the slow release med from 2 every 8 hours to 2 every 12 hours. Once we feel I am stabilized with the new steroid dosage, we are going to try changing the pain med to 1 pill every 8 hours. Hopefully, I will continue to tolerate the chemo well and the pain will continue to not be an issue. Being on less pain medication allows me to be more interactive and to mentally focus more easily. I am able to enjoy reading again.
Now that cycle 1 is complete, I hope the changes work, I pray for sound sleep at night and days that don't require too many naps! Thank you for your continued prayers and positive thoughts.
~~~~~~~~~~~~~~~
For any readers in the Seattle area, I'd like to pass along this information about an upcoming golf tournament. The event is August 3rd and the beneficiary is the Prostate Cancer Foundation. Details can be found from this link:
http://www.rodgersfight.org/
Fatigue has been the main issue and it comes sporadically. Some days it's in the morning, but most days it seems to come late in the evenings, after dinner. For the most part it feels like a real bad flu without the fever. Last night after treatment I was watching TV in bed by 6:30PM and fighting a nap. The reason I was fighting the nap was so that I would be able to get sleep later on in the middle of the night. For the most part I was able to stay awake, except for a 45 minute nap around 8pm. I was able to go to bed at a somewhat normal bedtime, I finally turned off the TV a little after 11pm. Except for one bathroom break and less than an hour of television at 2am, I slept great.
Today as I write this, it is already early evening and not only have made it through the day without a nap, I am in no need of sleep at this time. Mary and I might even get to watch a movie tonight! It doesn't take much for me to remind myself how much worse things could be. I could be sleeping constantly, dealing with other known side effects, or be back to where I was several weeks ago and be in need of far more pain meds than I am currently on.
One change we did agree to with the doctor yesterday was to adjust both my pain meds and steroid down slightly. The first change was to reduce the steroid (Dexamethasone) by half. I started yesterday afternoon and we'll give it a few days to make sure we don't cause any pain to resurface. If all goes well with reducing the steroid, in a week or so we will pursue further reduction of my pain medication. Mary has helped me to slowly transition the dose of my pain medication so that I no longer take any break through med and have stretched out the slow release med from 2 every 8 hours to 2 every 12 hours. Once we feel I am stabilized with the new steroid dosage, we are going to try changing the pain med to 1 pill every 8 hours. Hopefully, I will continue to tolerate the chemo well and the pain will continue to not be an issue. Being on less pain medication allows me to be more interactive and to mentally focus more easily. I am able to enjoy reading again.
Now that cycle 1 is complete, I hope the changes work, I pray for sound sleep at night and days that don't require too many naps! Thank you for your continued prayers and positive thoughts.
~~~~~~~~~~~~~~~
For any readers in the Seattle area, I'd like to pass along this information about an upcoming golf tournament. The event is August 3rd and the beneficiary is the Prostate Cancer Foundation. Details can be found from this link:
http://www.rodgersfight.org/
July 04, 2012
So far.... So far
On Monday I had my first dose of chemo, the first of three during this cycle. The cycles will be 1, one hour dose once a week for three weeks, and then a week off. We haven't determined how many cycles I will be taking. I guess it depends on how I respond and what happens with my PSA and how I am doing over all. Happy that the infusion is only an hour, but just so you understand what is involved, it actually takes about 6 hours in full for the 1 hour infusion. First, I have to have labs so they can check my blood, then a quick visit with the doctor and then we wait for the pharmacy to prepare the meds. I receive several pre meds interveniously before I actually receive the Taxotere. Mary is at my side through the whole process, so we talk and keep each other company, so the time passes fairly quickly.
We did receive good news in conjunction with all of the testing on Monday, my PSA dropped from 1,539 (June 19th) to 975 (July 2nd). We pray this is a premonition for things to come with the chemo!
Also, and very importantly, the pathology test from the fluid that was removed from my lungs came back negative, so there were no malignant cancer cells in the fluid, hence, not cancerous tumors on my lungs. That was a great relief!
As for side effects from the first chemo treatment, I have nothing to report after two days. Instead of the steroids keeping me awake, I actually slept quite well Monday night. Last night I was feeling 'normal' enough that we decided to go out for dinner instead of heating up the house. Nothing fancy, but it sure was good to get out of the house! The pain is still being managed with long acting pain medicine and no break through pain meds are required. I am happy to be on less pain medication, as it allows me to be more alert and feel like my ol' self.
Today will be a very hot fourth of July. I hope everyone manages to stay cool and has a nice day filled with fun and happiness with family and friends. Happy fourth!
We did receive good news in conjunction with all of the testing on Monday, my PSA dropped from 1,539 (June 19th) to 975 (July 2nd). We pray this is a premonition for things to come with the chemo!
Also, and very importantly, the pathology test from the fluid that was removed from my lungs came back negative, so there were no malignant cancer cells in the fluid, hence, not cancerous tumors on my lungs. That was a great relief!
As for side effects from the first chemo treatment, I have nothing to report after two days. Instead of the steroids keeping me awake, I actually slept quite well Monday night. Last night I was feeling 'normal' enough that we decided to go out for dinner instead of heating up the house. Nothing fancy, but it sure was good to get out of the house! The pain is still being managed with long acting pain medicine and no break through pain meds are required. I am happy to be on less pain medication, as it allows me to be more alert and feel like my ol' self.
Today will be a very hot fourth of July. I hope everyone manages to stay cool and has a nice day filled with fun and happiness with family and friends. Happy fourth!
June 30, 2012
Home again
I was released from the hospital late Monday afternoon. My procedure that morning went well. They removed almost 2 liters of fluid from my left lung. That's right....2 liters. No wonder I was having difficulty breathing! The fluid was sent to pathology to be tested. We have not yet received the results. The test will determine if there are cancer cells present. If so, that will mean the cancer has spread to my lung. If not present, it is caused by infection or pneumonia. I was on heavy duty antibiotics in case there is infection or pneumonia.
In addition to the blood clot on my shoulder, there are several blood clots on my left lung. I am on blood thinner to dissolve them. That means I am back to giving myself twice daily shots of Lovenox in the stomach.
Taking the slow release pain meds 3 times daily, instead of twice has made a huge difference. I am now taking 1 break thru pain med every 8 hours instead of 2 to 3 every 4 hours. We have a lot going on, but not having the pain is wonderful.
I am still experiencing edema in both legs and feet. It had all but gone away, but since I was in the hospital, the swelling is persistent. I am sleeping with my feet up and moving around much more, but taking intermittent breaks to try to relieve the swelling a bit.
We are planning to start chemo Monday morning. Instead of taking 1 large dose every 3 weeks, I will have a smaller dose once a week for 3 weeks and then have a week off. I am in good spirits and am hopeful that the chemo will shrink the cancer and enable us to resume a normal lifestyle once again.
In addition to the blood clot on my shoulder, there are several blood clots on my left lung. I am on blood thinner to dissolve them. That means I am back to giving myself twice daily shots of Lovenox in the stomach.
Taking the slow release pain meds 3 times daily, instead of twice has made a huge difference. I am now taking 1 break thru pain med every 8 hours instead of 2 to 3 every 4 hours. We have a lot going on, but not having the pain is wonderful.
I am still experiencing edema in both legs and feet. It had all but gone away, but since I was in the hospital, the swelling is persistent. I am sleeping with my feet up and moving around much more, but taking intermittent breaks to try to relieve the swelling a bit.
We are planning to start chemo Monday morning. Instead of taking 1 large dose every 3 weeks, I will have a smaller dose once a week for 3 weeks and then have a week off. I am in good spirits and am hopeful that the chemo will shrink the cancer and enable us to resume a normal lifestyle once again.
June 24, 2012
Not quite going to make it to Monday....
Although we didn't plan to see the doctor until Monday...we didn't quite make it....
On Thursday l had a a few bouts of shortness of breath in addition to the continued swelling in my left arm. When we finally received a call back from the doctor's office late Friday afternoon, they asked us to go to the ER for a few blood tests and a chest x-ray. After waiting far too long in the reception area of the ER (4 hours) we were placed in an ER exam room. 7 more hours there, which included a blood draw, a visit from an ER doctor and a chest xray and 2 sonograms, we were admitted to a room. 11 hours from when we arrived to the ER....Yes, Mary and I walked into the room at 4:00AM.
My oncologist paid us a visit Saturday morning.He informed us that I do have a blood clot in my left shoulder. (This explains the swelling in my left arm). It also appears I have some small clots on my lungs. Additionally, I have fluid in the lining between my left lung and rib cage. It could be a growth of the cancer or the clot in my arm spreading further. The liquid will be drained on Monday and further tests will be run to determine the source. While we wait for Monday, I started on blood thinners and several antibiotics.
In either case, clot or further metastasis of the primary cancer, we agreed that starting chemo was something we need to start sooner rather than later. The chemo of choice will be Taxotere once again. Unlike when I had chemo in 2008, and received it once every three weeks, this time I will receive smaller doses, once a week for three weeks and then one week off. The intent of this regimen is that it will hopefully be less toxic, to better allow my body to recover in between doses.
We will continue to consider radiation as a way to relieve the pain.The pain meds have gotten the pain under control, so if we decide that taking chemo and radiation at the same time may be too much for me, we will forgo the radiation to get the chemo going to fight the cancer. For now, the clinical trials are on hold for the time being.
Thinking about the cancer spreading to my lung is clearly concerning. We continue to stay positive and keep the hope alive that we can get this pc demon in my body under control and that we will be able to resume to some semblance of normalcy.
On Thursday l had a a few bouts of shortness of breath in addition to the continued swelling in my left arm. When we finally received a call back from the doctor's office late Friday afternoon, they asked us to go to the ER for a few blood tests and a chest x-ray. After waiting far too long in the reception area of the ER (4 hours) we were placed in an ER exam room. 7 more hours there, which included a blood draw, a visit from an ER doctor and a chest xray and 2 sonograms, we were admitted to a room. 11 hours from when we arrived to the ER....Yes, Mary and I walked into the room at 4:00AM.
My oncologist paid us a visit Saturday morning.He informed us that I do have a blood clot in my left shoulder. (This explains the swelling in my left arm). It also appears I have some small clots on my lungs. Additionally, I have fluid in the lining between my left lung and rib cage. It could be a growth of the cancer or the clot in my arm spreading further. The liquid will be drained on Monday and further tests will be run to determine the source. While we wait for Monday, I started on blood thinners and several antibiotics.
In either case, clot or further metastasis of the primary cancer, we agreed that starting chemo was something we need to start sooner rather than later. The chemo of choice will be Taxotere once again. Unlike when I had chemo in 2008, and received it once every three weeks, this time I will receive smaller doses, once a week for three weeks and then one week off. The intent of this regimen is that it will hopefully be less toxic, to better allow my body to recover in between doses.
We will continue to consider radiation as a way to relieve the pain.The pain meds have gotten the pain under control, so if we decide that taking chemo and radiation at the same time may be too much for me, we will forgo the radiation to get the chemo going to fight the cancer. For now, the clinical trials are on hold for the time being.
Thinking about the cancer spreading to my lung is clearly concerning. We continue to stay positive and keep the hope alive that we can get this pc demon in my body under control and that we will be able to resume to some semblance of normalcy.
June 19, 2012
That's a lot of 'ologists'!
On Monday I had my monthly Oncology appointment which included two shots, blood work and a brief meeting with the doctor. Due to my increased pain, which was becoming paralyzing, we wanted to talk further with the doctor to discuss treatment options and to develop a new plan of attack for these persistent PC cells that seem to be taking over my body. We went back today and talked with him about the treatments out there and a longer term plan.
Dr. V increased my pain meds and changed the steroid I am taking. I noticed changes for the better from both. I slept much better last night and overall, the pain decreased.
A bone scan was ordered and is scheduled for tomorrow afternoon. The primary objective of the scan is to identify tumors that would be considered 'hot spots'. They may be the main source of my pain and could be targeted with radiation. Consequently, once my oncologist receives the scan results, he will talk with my Radiation Oncologist. We will meet with the RO on Tuesday morning to find out if he thinks there is a radiation therapy that may alleviate my pain. We also discussed chemotherapy and the two early access trials I mentioned here last week. In order to receive the treatments in early access, I would have to be approved and of course, both would involve travel as well. In order to consider treatments with travel, I will have to first get my pain under control. Having spent seven consecutive days in bed, it was all I could do this week just to get to the KU cancer center.
For now we won't look too far ahead. We are praying the new doses of pain medicine will continue to counter my pain. On Monday we will head back to the cancer center to discuss the bone scan results with the oncologist and will also have a follow up consult with the surgeon who performed my surgery in May.
That is all for now. We are taking things one day at a time.Thank you for your past and continued prayers. It really helps to know we have all the support that we do!!
Dr. V increased my pain meds and changed the steroid I am taking. I noticed changes for the better from both. I slept much better last night and overall, the pain decreased.
A bone scan was ordered and is scheduled for tomorrow afternoon. The primary objective of the scan is to identify tumors that would be considered 'hot spots'. They may be the main source of my pain and could be targeted with radiation. Consequently, once my oncologist receives the scan results, he will talk with my Radiation Oncologist. We will meet with the RO on Tuesday morning to find out if he thinks there is a radiation therapy that may alleviate my pain. We also discussed chemotherapy and the two early access trials I mentioned here last week. In order to receive the treatments in early access, I would have to be approved and of course, both would involve travel as well. In order to consider treatments with travel, I will have to first get my pain under control. Having spent seven consecutive days in bed, it was all I could do this week just to get to the KU cancer center.
For now we won't look too far ahead. We are praying the new doses of pain medicine will continue to counter my pain. On Monday we will head back to the cancer center to discuss the bone scan results with the oncologist and will also have a follow up consult with the surgeon who performed my surgery in May.
That is all for now. We are taking things one day at a time.Thank you for your past and continued prayers. It really helps to know we have all the support that we do!!
June 12, 2012
An overdue update
I'm sure you have all realized the frequency of my posts has dropped considerably. A few of you have written to express your concern. I appreciate all your comments. No worries...I'm still here, but the battle and how we fight it have both changed considerably. The pain and amount of pain meds that I must take to manage the pain has increased significantly. Unfortunately, a side effect of the pain meds is that I am frequently groggy and I guess less creative. Both lead to fewer posts.
Next Monday we go to see the doctor for my monthly shots. We are planning to have a discussion about my current state and see if there is something I can change. Perhaps a few short doses of radiation would alleviate the pain and then I would not require such a high dose of pain medication. Another option may be to pursue the expanded access program for Alpharadin. Currently, the closest active site is St. Louis, which would be a quick four hour drive from here. Chemo remains an option as well and will also be considered. The main thing I am looking for is pain relief as quickly as possible, while not jeopardizing my eligibility for other trials in the future.
MDV3100 is still on the horizon!
MDV3100 is still on the horizon!
I promise to provide a more timely update after our appointment on Monday.
Please understand that I'm still here, battling everyday, and still determined to not succumb to this hideous disease, but I am just a little distracted by some of the ugly aspects of this disease.
May 24, 2012
Now what? You have got to be joking.
So just when we were ready to resume a somewhat normal, quiet couple of weeks with no events, visitors, or major plans, things took an unexpected turn last Tuesday at 1:00am, when I began to experience increasingly and severe pain in my mid to lower back and both thighs. It reached the point that Mary had to call the hot line for the Oncologist in the middle of the night. I ended up checking in to the hospital and connected to a morphine pump to deal with the pain. By 4:00am I was able to sleep so I told Mary to go home and get some sleep herself.
I was already scheduled for a bladder scope on Wednesday (the 16th) to see if they could determine why I was continuing to experience blood in my urine, and perhaps if the bladder was the source. While performing the bladder scope they cauterized a few smaller, older lesions on my bladder and completed an additional procedure that took pressure off my urethra that was being caused by my prostate. During our consultation with the surgeon, Mary asked if they could also replace the stents during the procedure, to give us an additonal three months before they have to be replaced. (I have had them for one month). They said if it did not cause too much bleeding, they would do it, and they did. Wednesday morning was filled with test after test (vitals, blood wor,k etc) and more discussions with Oncologists, Urologists, residents, nurses and more. What little sleep I had gotten was interrupted and short intervals. Though the back pain and leg pain had gone down considerably over night, I was weak from the general anesthesia and unable to have an MRI, as I could not lay flat on a table for 45 minutes to an hour. Even with the morphine, the pain was too intense to lay flat. The doctor had ordered an MRI to try to determine the root cause of the increased bone pain. We tried again on Thursday morning but the results were the same as before, too much pain. What made matters worse was Thursday morning they gave me a steroid (Dexamathasone) hoping this would help alleviate the pain. All it did was make me unable to sleep Thursday night. I would guess in total I may have gotten two hours of sleep Thursday night. I did doze off every few minutes during the day, as Mary sat at my bedside. Apparently, the combination of the anesthesia and the morphine made me very lethargic.
By Friday we threw in the towel and the doctor proposed that we have a CT scan to attempt to find the source of the pain in my back. Then, if there was an area they needed a closer look at, then we could try an MRI on a smaller area that would not require so much time on the table. The CT scan showed some increased activity in my lower spine but no consolidated area in the vertebrae that warranted radiation as an option to relieve the pain. The plan by Friday afternoon was to insure any remnants from the surgery were healing and then to go forward with pain medication to manage the pain. My PSA has been steadily decreasing since I started the Zytiga. It was at 2,770 mid April, and Monday was at 1300. Obviously, still way too high, but moving in the right direction. What gives us hope is that we will continue to see a response from the Zytiga, consequently some shrinkage in the cancerous tumors and then less pain and then less pain medicine! That is our hope.
The next challenge was to transition me from morphine to oxycotin. They increased the dose of oxcotin and started to reduce the morphine. The doctors monitored this closely, as we did not want to go home and then have a relapse of severe pain. By late afternoon on Sunday Mary was driving me home and I felt like I couldn't get there fast enough. It is so good to be home!
Over the last three days, my sleep is getting better. I am trying to limit the amount of pain meds I need for the break through pain. I am taking extended release oxycotin around the clock. I continue to have edema, so I have to keep my legs elevated a good part of the day, but feel a little stronger each day. Mary and I even went for a short walk around the block on Tuesday. There is a lot that lies ahead of us, but for now, we are focusing on recuperation and taking it one day at a time.
I was already scheduled for a bladder scope on Wednesday (the 16th) to see if they could determine why I was continuing to experience blood in my urine, and perhaps if the bladder was the source. While performing the bladder scope they cauterized a few smaller, older lesions on my bladder and completed an additional procedure that took pressure off my urethra that was being caused by my prostate. During our consultation with the surgeon, Mary asked if they could also replace the stents during the procedure, to give us an additonal three months before they have to be replaced. (I have had them for one month). They said if it did not cause too much bleeding, they would do it, and they did. Wednesday morning was filled with test after test (vitals, blood wor,k etc) and more discussions with Oncologists, Urologists, residents, nurses and more. What little sleep I had gotten was interrupted and short intervals. Though the back pain and leg pain had gone down considerably over night, I was weak from the general anesthesia and unable to have an MRI, as I could not lay flat on a table for 45 minutes to an hour. Even with the morphine, the pain was too intense to lay flat. The doctor had ordered an MRI to try to determine the root cause of the increased bone pain. We tried again on Thursday morning but the results were the same as before, too much pain. What made matters worse was Thursday morning they gave me a steroid (Dexamathasone) hoping this would help alleviate the pain. All it did was make me unable to sleep Thursday night. I would guess in total I may have gotten two hours of sleep Thursday night. I did doze off every few minutes during the day, as Mary sat at my bedside. Apparently, the combination of the anesthesia and the morphine made me very lethargic.
By Friday we threw in the towel and the doctor proposed that we have a CT scan to attempt to find the source of the pain in my back. Then, if there was an area they needed a closer look at, then we could try an MRI on a smaller area that would not require so much time on the table. The CT scan showed some increased activity in my lower spine but no consolidated area in the vertebrae that warranted radiation as an option to relieve the pain. The plan by Friday afternoon was to insure any remnants from the surgery were healing and then to go forward with pain medication to manage the pain. My PSA has been steadily decreasing since I started the Zytiga. It was at 2,770 mid April, and Monday was at 1300. Obviously, still way too high, but moving in the right direction. What gives us hope is that we will continue to see a response from the Zytiga, consequently some shrinkage in the cancerous tumors and then less pain and then less pain medicine! That is our hope.
The next challenge was to transition me from morphine to oxycotin. They increased the dose of oxcotin and started to reduce the morphine. The doctors monitored this closely, as we did not want to go home and then have a relapse of severe pain. By late afternoon on Sunday Mary was driving me home and I felt like I couldn't get there fast enough. It is so good to be home!
Over the last three days, my sleep is getting better. I am trying to limit the amount of pain meds I need for the break through pain. I am taking extended release oxycotin around the clock. I continue to have edema, so I have to keep my legs elevated a good part of the day, but feel a little stronger each day. Mary and I even went for a short walk around the block on Tuesday. There is a lot that lies ahead of us, but for now, we are focusing on recuperation and taking it one day at a time.
May 16, 2012
Roses and little flying plastic things
On the May 4th, we had our 4th annual greenhouse event. I spent the evening in a comfortable chair with my foot elevated but that allowed me to visit with all the wonderful friends that stopped by to visit.
My sister from Ohio was here for a visit, so she was able to enjoy the event as well. She was with us from Thursday until Tuesday and between Mary and her, all the gardens were planted!
Last Saturday was our 5th annual disc golf tournament. This year was extra special, as we sold out with over 100 players! The weather was perfect and the event went off without a hitch. I can't thank the Board enough for all of their help. Like all the events we have, help from Mark, Rich, Steve, Chris and Mary are key to the overall success. I appreciate each of them more than they know.
My sister from Ohio was here for a visit, so she was able to enjoy the event as well. She was with us from Thursday until Tuesday and between Mary and her, all the gardens were planted!
Last Saturday was our 5th annual disc golf tournament. This year was extra special, as we sold out with over 100 players! The weather was perfect and the event went off without a hitch. I can't thank the Board enough for all of their help. Like all the events we have, help from Mark, Rich, Steve, Chris and Mary are key to the overall success. I appreciate each of them more than they know.
May 01, 2012
I'm still here
It's been over a week, and since things have been rather hectic, I'm just now getting it all written into a blog post..
After being discharged from the hospital on the 14th and spending the following weekend getting the pain under control, I spent the early part of last week getting used to the pair of bags attached to my sides. They made getting around difficult and sleeping even more so. Mary helped me work my way through it and by last Thursday I was back at the hospital having the out-patient procedure necessary to have the ureter tubes internalized.
Aside from laying in the prep area for ninety minutes, the procedure went fine and I was back home by late afternoon. It sure was good to no longer have the bags of urine in my pockets but sleeping did not get much better. The first few nights I still was unable to sleep on my side and continued to wake up during the night. It has slowly gotten better and now after a week, last night was the most sound sleep I have had in weeks. Typically, being able to sleep for a solid 3 hours is considered good for us.
Of course in the midst of this we had to take a step back before we could move forward. Last Friday, the day after the procedure, I noticed swelling in my left leg. It was mid-afternoon and because we didn't want this to get worse over the weekend, Mary called the Oncologist's office right away. They asked that I come in as soon as possible so they could perform an ultrasound on both legs. Being that I have a history of blood clots, we were prepared for the worst. It turned out it was bad, but not that bad. I have edema (http://en.wikipedia.org/wiki/Edema) The pictures in the link are much worse than my case!
Dr. V prescribed water pills hoping that they would help a little before we had our monthly meeting with him on Monday. There wasn't much change over the weekend and by the time we met with Dr. V on Monday morning the swelling was relatively unchanged. The edema is being caused by the location of and number of swollen lymph nodes in my abdomen. The best way to address this would be with chemotherapy. The issue we had with moving on to chemo is that I am just getting my strength back after 7+ months on XL-184. All the side effects have subsided and my appetite is great. It is wonderful to be able to enjoy food again. That being said, I still have a way to go to gain overall strength.
The other option we agreed to try was to go back and try Zytiga (Abiraterone) again. This is the drug I was receiving when I was traveling back and forth to Atlanta last year. We know it is a long shot, but I experienced minimal side effects so if it helps to stabilize me and I can continue to get stronger, than it will be a success by our standards. I started taking the medicine on Monday and agreed to meet with the doctor again in a week to check the progress. We met with the doctor yesterday. Although the swelling is still an issue and I am forced to be on bed rest, I am feeling better over all and the swelling improves when I am laying with my legs elevated. Now, many of you know me, and know that if I am feeling ok, to be laying around all day is not an easy task.
Ideally, the Zytiga will start to impact the cancer tumors, shrinking my lymph nodes and the swelling will diminish. Then we can put chemo off for a while. We do have another treatment option that we would prefer to chemo. It is called, MDV 3100. Currently the manufacturers of this drug are attempting to get an 'early access' trial approved. EA trials are basically a Phase III trial with no placebo arm. Designed for patients in my situation that are desperate for treatment options. There is no telling when the availability will happen or which locations across the country will enroll patients. Ideally, it will be sooner rather than later and the real home run will be if KU Cancer Center is an approved site.
First things first, I continue on Zytiga and we keep fighting the fight.
After being discharged from the hospital on the 14th and spending the following weekend getting the pain under control, I spent the early part of last week getting used to the pair of bags attached to my sides. They made getting around difficult and sleeping even more so. Mary helped me work my way through it and by last Thursday I was back at the hospital having the out-patient procedure necessary to have the ureter tubes internalized.
Aside from laying in the prep area for ninety minutes, the procedure went fine and I was back home by late afternoon. It sure was good to no longer have the bags of urine in my pockets but sleeping did not get much better. The first few nights I still was unable to sleep on my side and continued to wake up during the night. It has slowly gotten better and now after a week, last night was the most sound sleep I have had in weeks. Typically, being able to sleep for a solid 3 hours is considered good for us.
Of course in the midst of this we had to take a step back before we could move forward. Last Friday, the day after the procedure, I noticed swelling in my left leg. It was mid-afternoon and because we didn't want this to get worse over the weekend, Mary called the Oncologist's office right away. They asked that I come in as soon as possible so they could perform an ultrasound on both legs. Being that I have a history of blood clots, we were prepared for the worst. It turned out it was bad, but not that bad. I have edema (http://en.wikipedia.org/wiki/Edema) The pictures in the link are much worse than my case!
Dr. V prescribed water pills hoping that they would help a little before we had our monthly meeting with him on Monday. There wasn't much change over the weekend and by the time we met with Dr. V on Monday morning the swelling was relatively unchanged. The edema is being caused by the location of and number of swollen lymph nodes in my abdomen. The best way to address this would be with chemotherapy. The issue we had with moving on to chemo is that I am just getting my strength back after 7+ months on XL-184. All the side effects have subsided and my appetite is great. It is wonderful to be able to enjoy food again. That being said, I still have a way to go to gain overall strength.
The other option we agreed to try was to go back and try Zytiga (Abiraterone) again. This is the drug I was receiving when I was traveling back and forth to Atlanta last year. We know it is a long shot, but I experienced minimal side effects so if it helps to stabilize me and I can continue to get stronger, than it will be a success by our standards. I started taking the medicine on Monday and agreed to meet with the doctor again in a week to check the progress. We met with the doctor yesterday. Although the swelling is still an issue and I am forced to be on bed rest, I am feeling better over all and the swelling improves when I am laying with my legs elevated. Now, many of you know me, and know that if I am feeling ok, to be laying around all day is not an easy task.
Ideally, the Zytiga will start to impact the cancer tumors, shrinking my lymph nodes and the swelling will diminish. Then we can put chemo off for a while. We do have another treatment option that we would prefer to chemo. It is called, MDV 3100. Currently the manufacturers of this drug are attempting to get an 'early access' trial approved. EA trials are basically a Phase III trial with no placebo arm. Designed for patients in my situation that are desperate for treatment options. There is no telling when the availability will happen or which locations across the country will enroll patients. Ideally, it will be sooner rather than later and the real home run will be if KU Cancer Center is an approved site.
First things first, I continue on Zytiga and we keep fighting the fight.
April 27, 2012
Another Friday in the Greenhouse
For those of you in the Kansas City area, please join us next Friday night for out fourth annual "Friday Night at the Greenhouse' event. Like last year, we will be at the Suburban Lawn and Garden location at 105thst and Roe Avenue. 10% of all purchases made between 5pm and 8pm will be donated to FLHW.
We hope to see you then!!
April 17, 2012
On multiple fronts
It was last Friday, very early in the morning (1:15am) and it was my fourth day in the hospital. I obviously could not sleep. Though the staff on the Oncology/Hematology floor was great, the constant blood drawls and vital sign checks were driving me crazy and making sleep nearly impossible. I needed to be home.
Earlier in the week I had a stent placed in each kidney in order to deal with blockage and allow urine to drain from my body. I had experienced acute kidney injury. It was dangerous and a very scary experience for me, as well as the family. After the kidneys were drained, the surgeon attached tubes to my kidneys and put 2 holes in my back to allow the tubes to come through and attach to bags to capture urine. The good news is that it appears my kidneys are recovering and the marker for kidney function is back in the normal range. We met with Dr. Van yesterday and he was pleased with my progress. We scheduled an appointment for an outpatient surgical procedure on Thursday to have the tubes internalized so that they will allow the urine to flow from my kidneys directly to my bladder, which will allow me to urinate normally. We are relieved that the bags are just temporary. The blockage due to cancerous tumors will not allow normal drainage. The tubes will have to be replaced every 3 to 4 months, which will also be done on an outpatient basis.
After being released and returning home on Friday, the worst part has been getting the pain under control. By Sunday at noon the dosages of both Oxycontin and Oxycodone were not keeping up. My pain and discomfort was increasing. Mary made a phone call to the doctor's after hours number. The doses of my pain meds were immediately doubled and Prednisone was added. After a few painful hours, I felt much better. I even ate a rather larger dinner (for my standards) Sunday evening. I told Mary I enjoyed the meal more than I have in the last three months. Another positive note to report is that I have gained a little weight over the last week.
What lies ahead for the cancer treatment is another unknown. We have our monthly appointment with Dr. V on Monday (April 23rd) and will discuss treatment options and start to make a game plan.
Thank you to everyone who has been praying for us and sending us so much positive energy.
Earlier in the week I had a stent placed in each kidney in order to deal with blockage and allow urine to drain from my body. I had experienced acute kidney injury. It was dangerous and a very scary experience for me, as well as the family. After the kidneys were drained, the surgeon attached tubes to my kidneys and put 2 holes in my back to allow the tubes to come through and attach to bags to capture urine. The good news is that it appears my kidneys are recovering and the marker for kidney function is back in the normal range. We met with Dr. Van yesterday and he was pleased with my progress. We scheduled an appointment for an outpatient surgical procedure on Thursday to have the tubes internalized so that they will allow the urine to flow from my kidneys directly to my bladder, which will allow me to urinate normally. We are relieved that the bags are just temporary. The blockage due to cancerous tumors will not allow normal drainage. The tubes will have to be replaced every 3 to 4 months, which will also be done on an outpatient basis.
After being released and returning home on Friday, the worst part has been getting the pain under control. By Sunday at noon the dosages of both Oxycontin and Oxycodone were not keeping up. My pain and discomfort was increasing. Mary made a phone call to the doctor's after hours number. The doses of my pain meds were immediately doubled and Prednisone was added. After a few painful hours, I felt much better. I even ate a rather larger dinner (for my standards) Sunday evening. I told Mary I enjoyed the meal more than I have in the last three months. Another positive note to report is that I have gained a little weight over the last week.
What lies ahead for the cancer treatment is another unknown. We have our monthly appointment with Dr. V on Monday (April 23rd) and will discuss treatment options and start to make a game plan.
Thank you to everyone who has been praying for us and sending us so much positive energy.
April 14, 2012
Mad World
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.
"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.
April 11, 2012
Specialized Plumber Needed
After stopping the XL 184 back on the 1st of April, we were expecting some positive changes. By last weekend, I did start seeing changes, but not so positive.
Friday night into Saturday morning, I began to experience mild pain in both femurs and in several areas of my back. Sunday morning I experienced several episodes of vomiting for the first time. It happened later that day again and both Monday and yesterday morning as well.
A call to Boston didn't lead to much insight into my potential situation, as Mary was told that most people start feeling back to their normal selves after a few days of stopping the trial drug.
By Monday afternoon Mary called my local oncologist in Kansas City to alert him of her concerns with my deteriorating condition. The big concerns were pain, limited and liquid only diet for several days, my increased weakness and the onset of dehydration.
Yesterday (Tuesday) I was at the KU Cancer Center by 8:15 AM and then admitted the the hospital itself by 1:00 PM. With a catheter in place and many,many liters of saline solution the concern is no urine is being passed. Additionally, the marker for my kidney function is 4 times higher than it should be and increasing.
This morning we will find out the outcome of all the tests and scans that have been taken.
Looks like I'm here for a few days, but my spirits are high and we will get through this, as we have before.
Friday night into Saturday morning, I began to experience mild pain in both femurs and in several areas of my back. Sunday morning I experienced several episodes of vomiting for the first time. It happened later that day again and both Monday and yesterday morning as well.
A call to Boston didn't lead to much insight into my potential situation, as Mary was told that most people start feeling back to their normal selves after a few days of stopping the trial drug.
By Monday afternoon Mary called my local oncologist in Kansas City to alert him of her concerns with my deteriorating condition. The big concerns were pain, limited and liquid only diet for several days, my increased weakness and the onset of dehydration.
Yesterday (Tuesday) I was at the KU Cancer Center by 8:15 AM and then admitted the the hospital itself by 1:00 PM. With a catheter in place and many,many liters of saline solution the concern is no urine is being passed. Additionally, the marker for my kidney function is 4 times higher than it should be and increasing.
This morning we will find out the outcome of all the tests and scans that have been taken.
Looks like I'm here for a few days, but my spirits are high and we will get through this, as we have before.
April 08, 2012
Moving on
I always knew there would be an end to my current treatment, there is no cure after all. I knew it would only last so long. Like each of the proceeding treatments, this one was just me scuffling with the enviable, time.
My appetite had gotten so bad last week that we called the nurse in Boston on Monday morning. After consulting with the doctor, she called back and told me to stop taking the drug (XL-184). We don't know how quickly the side effects will subside, but we are hoping soon, so that I can get my strength back and resume some semblance of normalcy.
Mary and I will be going to Boston in the next several weeks. I will have scans done once again and then we will meet with our doctor. Item one on the agenda will be to determine our options - should we change the dosage to a lower amount, or what is next? There is a newer trial of XL-184 at 40mg (I'm still at 50mg), but I believe the way the trials work, to adjust to the 40 mg I would have to quit the existing trial I'm in and and qualify for the newer trial. If the new trial has an exclusion criteria for previous XL 184 patients, then I would not qualify and must pursue other options.
Once we determine the next treatment, I'll share the details. Since I was diagnosed with advanced prostate cancer, we have worked to support the research to find improved treatments and ultimately a cure for this dreadful disease. We are living proof of this need. For now, me move on with our heads held high and prayers on our lips and in our hearts.
My appetite had gotten so bad last week that we called the nurse in Boston on Monday morning. After consulting with the doctor, she called back and told me to stop taking the drug (XL-184). We don't know how quickly the side effects will subside, but we are hoping soon, so that I can get my strength back and resume some semblance of normalcy.
Mary and I will be going to Boston in the next several weeks. I will have scans done once again and then we will meet with our doctor. Item one on the agenda will be to determine our options - should we change the dosage to a lower amount, or what is next? There is a newer trial of XL-184 at 40mg (I'm still at 50mg), but I believe the way the trials work, to adjust to the 40 mg I would have to quit the existing trial I'm in and and qualify for the newer trial. If the new trial has an exclusion criteria for previous XL 184 patients, then I would not qualify and must pursue other options.
Once we determine the next treatment, I'll share the details. Since I was diagnosed with advanced prostate cancer, we have worked to support the research to find improved treatments and ultimately a cure for this dreadful disease. We are living proof of this need. For now, me move on with our heads held high and prayers on our lips and in our hearts.
April 05, 2012
Another Loss
I had mentioned John A. here briefly over the last few months. On March 25th the disease finally got the best of him.
He leaves a huge hole in the on-line community and will be greatly missed. He continued to guide us and provide inspiration as he and his wife Jeanne continued to share their experience through the last weeks and days of his journey on earth.
There were a number of tributes and things written about John, I believe my friend Joel did an exemplary job: http://advancedprostatecancer.net/?p=3135
I have no other words to add other than I really hate this disease.
To John:
Hail Mary, full of grace.
Our 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.
He leaves a huge hole in the on-line community and will be greatly missed. He continued to guide us and provide inspiration as he and his wife Jeanne continued to share their experience through the last weeks and days of his journey on earth.
There were a number of tributes and things written about John, I believe my friend Joel did an exemplary job: http://advancedprostatecancer.net/?p=3135
I have no other words to add other than I really hate this disease.
To John:
Hail Mary, full of grace.
Our 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.
April 02, 2012
Good thing I'm not vain
As you might be able to tell from this picture the trial medication is taking its toll on me.
My hair has pretty much turned white all over but more concerning is my weigh. Over the past two weeks my appetite has gotten worse and that is reflected in the additional 6 pounds I have lost (30 in total).
We spoke to the dietician at KU Cancer Center last Monday and she provided several ideas that we are trying but I fear it may not be enough.
We will continue to work on it with every meal but it's becoming really difficult for me to eat. Though I return to Boston in a few weeks, we might be talking to them on the phone even sooner.
My hair has pretty much turned white all over but more concerning is my weigh. Over the past two weeks my appetite has gotten worse and that is reflected in the additional 6 pounds I have lost (30 in total).
We spoke to the dietician at KU Cancer Center last Monday and she provided several ideas that we are trying but I fear it may not be enough.
We will continue to work on it with every meal but it's becoming really difficult for me to eat. Though I return to Boston in a few weeks, we might be talking to them on the phone even sooner.
March 28, 2012
My friend T
A friend posted this in his blog the other day.
"Be sure to listen to the rain....it's like God is playing symphony just for you. I think you'll find a variety of simple pleasures in it to help you through this".
He's a fellow PCa warrior in Seattle! Fight on T, prayers are with you!
"Be sure to listen to the rain....it's like God is playing symphony just for you. I think you'll find a variety of simple pleasures in it to help you through this".
He's a fellow PCa warrior in Seattle! Fight on T, prayers are with you!
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 18, 2012
The four horseman
The 'four horseman' as I've come to call them (fatigue, no appetite, nausea and diarrhea) have reared their ugly heads again over the past week. The appetite is most concerning because when you have no desire to eat, forcing yourself is not an option. The result is I have lost another 5 pounds and at times I am having a hard time finding anything I can eat. Bless my wife for her patience, this is very difficult and stressful on her.
I am going to keep on fighting, at least through my April appointment in Boston. After that we will have to see what options are available and if continuing the trial is still manageable.
There is however a fellow participant in the XL-184 trial that has decided to end his participation. Though his overall bone tumors were significantly less than mine, his scans never showed a real decrease or reaction to the medication. His last scans actually showed a slight increase in tumor size. The results of the scans, coupled with impact of the four horseman on him personally have forced him to seek other treatments.
Like I mentioned, I too might join him come April, we'll see how things go.
I am going to keep on fighting, at least through my April appointment in Boston. After that we will have to see what options are available and if continuing the trial is still manageable.
There is however a fellow participant in the XL-184 trial that has decided to end his participation. Though his overall bone tumors were significantly less than mine, his scans never showed a real decrease or reaction to the medication. His last scans actually showed a slight increase in tumor size. The results of the scans, coupled with impact of the four horseman on him personally have forced him to seek other treatments.
Like I mentioned, I too might join him come April, we'll see how things go.
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!
March 05, 2012
What's on my mind lately
A few posts ago I asked you to add our friend and former neighbor Jennifer to your prayers. After fighting to the very end, Jennifer went home to heaven today. Things took a turn for the worse last week and this news leaves me very sad for her husband and young son. They are all so young, she was always so happy. Life is unfair sometimes, this is definitely one of those times!
Mary picked up on this the other day and asked if I was internalizing what Jennifer and her family were going through. I answered no, but Jennifer's difficult journey with cancer along with a few others recently have weighed heavy on my heart. The other two situations that have contributed to my solemn mood are from two gentlemen who are participants on the prostate cancer message boards that I follow. The men are in very late stage, they no longer receive treatment, and choose to spend their remaining days at home with their families while receiving hospice care.
One man in particular, John A, is sharing his final days in very specific detail. It’s insightful, fascinating, and so eye opening I hang on every written word. I hope you don’t interpret this as morbid. What John writes is beautiful, along with educational. He shares it with those of us that will follow his path someday. I’ve gone over this from time to time the last few years, but without the type of detail John is providing. I just expected a long drawn out painful end in a hospital bed. However, the insight John has provided has completely changed my thoughts on how this whole thing winds down. It’s with the grace and the caring hands of a certain someone along with those from a good hospice. Additionally, and more importantly, it’s at home, surrounded by friends, family and love.
Please, please don’t interpret this as me throwing in the towel, I’m far from there, there’s a hell of a lot of fight left in me. I just shared this today because it obviously has been on my mind a lot. With the onset of spring I can feel things changing, mostly my mood. I need to get out more and walk. I can’t wait to sleep with the windows open. I anticipate flowers blooming and the trees with leaves. As I say every year at this time, spring is my favorite season.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A brief update on my last post, I’m almost 100% certain the monthly aches and pains are a side effect of the two monthly shots. More specifically, I believe the Xgeva (bone strengthener) is the culprit. It started over the weekend and last night I needed Advil and the heating pad to sleep. Today is better and I hope this only lasts a few days instead of lasting a week like it did last month.
A brief update on my last post, I’m almost 100% certain the monthly aches and pains are a side effect of the two monthly shots. More specifically, I believe the Xgeva (bone strengthener) is the culprit. It started over the weekend and last night I needed Advil and the heating pad to sleep. Today is better and I hope this only lasts a few days instead of lasting a week like it did last month.
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 23, 2012
The elephant in the room
Perhaps the worst of the current side effects I am dealing with is diarrhea. Admittedly a subject no one likes to talk about and I'm sure most of you don't want to read about.
I've been dealing with this for almost two months. Like the other symptoms (fatigue, nausea and loss of appetite), this comes and goes each week. I am never 'regular' but have days where I am close to it. However, far out weighing that are days like today where my stomach rumbles all day, and the result is not fun.
It's a subject I have debated sharing and decided that since I share nearly everything else here, I'd share this as well. It's really draining me and has got to be the main reason for the weight loss. Week after week of this is becoming grueling. I think I am more aware of the overall impact over the past two weeks because the other symptoms have otherwise been much better. Less fatigue, I gained a few pounds and am eating better. Only slightly, but a little better. These changes have allowed me to go in the office for over a week straight and counting.
Now, if I could just get this other problem under control, life would be grand.
I've been dealing with this for almost two months. Like the other symptoms (fatigue, nausea and loss of appetite), this comes and goes each week. I am never 'regular' but have days where I am close to it. However, far out weighing that are days like today where my stomach rumbles all day, and the result is not fun.
It's a subject I have debated sharing and decided that since I share nearly everything else here, I'd share this as well. It's really draining me and has got to be the main reason for the weight loss. Week after week of this is becoming grueling. I think I am more aware of the overall impact over the past two weeks because the other symptoms have otherwise been much better. Less fatigue, I gained a few pounds and am eating better. Only slightly, but a little better. These changes have allowed me to go in the office for over a week straight and counting.
Now, if I could just get this other problem under control, life would be grand.
February 13, 2012
Way back when
Last week was the anniversary of my original biopsy. While I don’t remember much of the actual procedure, I do remember having to wait a week before I got a call back from the doctor. February 11, 2005 was the day that confirmed I had ‘it’. Though the bone and CT scan that would take place the next week confirmed the extent of the spread, the biopsy was the real start of the horror.
I know I over use this expression, but so much has happened, so much has changed. One thing that hasn't changed since then was a statement I wrote back on February 11, 2005,
‘I don't want to die, this is harder than I even expected, pray for me’.
‘I don't want to die, this is harder than I even expected, pray for me’.
We settled into a routine years ago, one that provides enough comfort for us to function on a daily basis. It accounts for the peaks and valleys between doctors’ appointments and the other typical things that go on in a family. Last week was slightly better when it comes to the side effects, but I still struggle. There’s plenty of fight left in me all these years later. The bottom line however is I’m still not ready to die. I feel like I have a lot to do. So the feelings of nausea and fatigue just add to the weight that I bear on a daily basis, and at times have me wondering how much more can I do?
February 06, 2012
An update on 'the Buddy System'
As a follow up to the article that was published last June, the editors of 435 South Magazine asked John and I to film a little chat session that they plan to use on their website.
This was filmed sometime last September. It was completely unrehearsed and our one and only take. Let me know you think!
This was filmed sometime last September. It was completely unrehearsed and our one and only take. Let me know you think!
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 27, 2012
The Cake Gets Bigger
Today is my 49th birthday. Frankly, I wasn't sure I was going to make it, seriously.
The first birthday post I publishedin this blog was in 2006:
http://prostatecancerat42.blogspot.com/2006/01/were-going-to-need-bigger-cake.html
Although a number of names would need to be added to the acknowledgment portion, I likely could have re-posted the entry word for word this year and the message would have been then same.
It's a weekend of friends, family, relaxation and celebrating 49. It also marks the beginning of all the sorted milestones, initial diagnosis, first scans, official diagnosis and the beginning of living with this dreaded disease. I'll do my best to mark each of these with a post.
For now, HBD2ME!!
The first birthday post I publishedin this blog was in 2006:
http://prostatecancerat42.blogspot.com/2006/01/were-going-to-need-bigger-cake.html
Although a number of names would need to be added to the acknowledgment portion, I likely could have re-posted the entry word for word this year and the message would have been then same.
It's a weekend of friends, family, relaxation and celebrating 49. It also marks the beginning of all the sorted milestones, initial diagnosis, first scans, official diagnosis and the beginning of living with this dreaded disease. I'll do my best to mark each of these with a post.
For now, HBD2ME!!
January 24, 2012
A beautiful day in Boston
Yesterday, I flew up here to Boston in order to have updated CT and bone scans. Both procedures were uneventful, except once again, the CT fluid acted like a barium enema. I'll leave it at that. Needless to say, my afternoon in the hotel room pretty much sucked.
Last night it was pouring down rain, so I just went to an Italian restaurant connected to the hotel and picked up dinner to go. Between not being in my own bed and the residual effects of 150mg of Prednisone, I slept like a baby, with colic! The good news is my appointment was not until 1:00 PM, so I was able to sleep a little later this morning to make up for my lost sleep.
I ran into my friend Ralph from New Jersey. It was nice to see a familiar face and catch up with him. He is in the same trial, and currently on the same dose (75mg). He is also
experiencing the same side effects as me,: lack of appetite, nausea, diarrhea, etc.
We'll touch base later this week to compare the outcomes of both our appointments.
I went over everything in detail with Dr. S and he recommended we change to a lower dose (50mg). I told him I'd like to see the bone scan first. When we compared yesterday's scans to those taken in August, it was incredible to see the contrast and a relief to be able to see how much the tumors have gone down. Even comparing the scans to those just taken 9 weeks ago, there were very noticeable reductions. Some of the reporting from the pharmaceutical company lags behind but what they did have showed a 42% overall reduction from Aug thru the November scans. After yesterday's it might be 50%. After seeing these, we agreed to lower the dose to 50mg. The doctor was very certain all the side effects would lesson by doing so.
I return to Boston again in 6 weeks just for an appointment to meet with the doctor, and then 6 weeks later I will return for the same routine as this week to have updated scans.
There was snow on the ground when I arrived yesterday. Right now it's 55 degrees and
sunny! Somebody sang 'Life is good today', and I agree - it sure is.
Last night it was pouring down rain, so I just went to an Italian restaurant connected to the hotel and picked up dinner to go. Between not being in my own bed and the residual effects of 150mg of Prednisone, I slept like a baby, with colic! The good news is my appointment was not until 1:00 PM, so I was able to sleep a little later this morning to make up for my lost sleep.
I ran into my friend Ralph from New Jersey. It was nice to see a familiar face and catch up with him. He is in the same trial, and currently on the same dose (75mg). He is also
experiencing the same side effects as me,: lack of appetite, nausea, diarrhea, etc.
We'll touch base later this week to compare the outcomes of both our appointments.
I went over everything in detail with Dr. S and he recommended we change to a lower dose (50mg). I told him I'd like to see the bone scan first. When we compared yesterday's scans to those taken in August, it was incredible to see the contrast and a relief to be able to see how much the tumors have gone down. Even comparing the scans to those just taken 9 weeks ago, there were very noticeable reductions. Some of the reporting from the pharmaceutical company lags behind but what they did have showed a 42% overall reduction from Aug thru the November scans. After yesterday's it might be 50%. After seeing these, we agreed to lower the dose to 50mg. The doctor was very certain all the side effects would lesson by doing so.
I return to Boston again in 6 weeks just for an appointment to meet with the doctor, and then 6 weeks later I will return for the same routine as this week to have updated scans.
There was snow on the ground when I arrived yesterday. Right now it's 55 degrees and
sunny! Somebody sang 'Life is good today', and I agree - it sure is.
January 18, 2012
Winter's got a hold on me
As I mentioned in my last post, I had this big plan to blog a lot this year. I’ll eventually catch fire and start to post more, but for now, winter’s got a hold on me and I just don’t feel very creative or motivated. I can't complain about the weather that we have had so far this season, but it is still winter.
There are no real changes in my health. The fatigue is a little better. I have been in the office full time for seven straight days. The lack of appetite and diarrhea continue. The former is constant, the latter day to day.
I will share that I am reading the Steve Jobs biography. While I was always a fan and thought highly of him, this book has totally changed my opinion. To me, his management style and the way he treated people completely take away from his creative brilliance. I’m just half way through with the book, but cannot image there is some hidden gem in the latter half of the book that will change my perception of the man. Once again, his work and the products Apple created upon his return in the late 1990’s are unheralded, but at what cost to his family, friends and those that worked for him. This is just my opinion, you can decide on your own. The book is a thousand pages, and for the most part, a page turner.
Since we didn’t go to St. Louis over the holidays, we have been pleased to have family visit here in KC. Last weekend my brother Doug and his wife Michelle came in. We didn’t do much except watch some movies and football, but it was good to have the house full and spend time with them. The weekend coming up my other brother Dan, sister Barb and nephew Zach are coming. I look forward to that as well.
For now I will continue to trudge through winter. It has been extremely mild here in Kansas City and it looks like it might continue for the next several weeks. The next thing you know it will be spring, my favorite season of the year.
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.
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