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.
May 24, 2012
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.
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