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A brief update

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I realize it had been a few days since my last post and as soon as I posted my last, things went south again. I’m really tired and don’t have time for a day by day update so here is the cliff notes version:

The over the counter laxatives barely got me through the week. On Friday my local Oncologist phoned in something stronger, 14 hours later it started working. ‘Started working’ is a far cry from back to normal but we are getting there. Once I get my bowels back on track I can start dealing with the pain and then better sleep will come as well.

As for the trial medication, as of Thursday I restarted at a lower dose (75mg). Now I have to find patience to let it begin working.

My biggest concern is turning this around before my trip to Boston next week. On top of that we have plans to visit with family over the Thanksgiving holiday. Hoping at this point that I will be well enough to make the trip.

That’s all for now. I hope to make small amounts of progress each day,and I’ll do my best to make sure I write another update before too much time passes!

Tomorrow, is another day, a better day

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The previous four days were pretty horrible. As I’ve mentioned here before, I have been taking pain pills a few times a day to deal with back and hip pain. Though they have been doing a great job for me, one of the unfortunate side effects is constipation. I was doing a good job of keeping on top of this particular issue until last Friday. I realized what the issue was immediately but several different types of over the counter medications did not work. There are a number of side effects that can manifest, in my case, I developed severe pain in both kidneys.

By Saturday morning I also began having complications from the increased dosage of trial medication, excruciating nausea. I’m not talking a little tummy ache either. Given these two issues, I also wasn’t eating much at all.

I made it through the weekend (barely) and called the clinical trial nurse in Boston first thing on Monday. She told me to stop the medication for two days to allow the side effects to clear up and she would call back on Wednesday with instructions on a lower dose.

By chance, Monday was my monthly appointment with my Oncologist. While there I was given 2 liters of saline solution to help me avoid dehydratrion, along with two types of anti-nausea medication. I was hoping for instant relief, but the nausea didn’t subside until around 10pm.

As bad as all this may seem, it causes me to resort to a cliche, ‘tomorrow is another day’, and today was just that, another day, a better day. The nausea is all but gone, the pipes are working better and I was able to eat both breakfast and lunch so far.

Once again, in the midst of my chaotic life, prayers and determination get me through another lap on the roller coaster.

The short version

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Last week while in Boston I had updated bone and CT scans. Both were standard protocol for the trial. The results from the pharmaceutical company conducting the trial will be available when I return in early November. The official reading from the scans will determine if the dosage I am currently taking is effective, or if it needs to be increased.
The preliminary reading indicated that overall, the foci are slightly less intense and confluent than on prior imaging; this improvement is especially prominent in the ribs and spine. One’s first reaction might be that a celebration would be in order. However, there are two reasons that we are not yet in a celebratory state at the Emerson’s.  The first being, the results will have to indicate that the ‘improvement’ needs to be 30% or greater in order to continue at the current dosage. Increasing the dosage is not a bad thing, but it will come with the risk of more side effects. (Currently, I have not experienced any side effects from the treatment, except for increased fatigue, which may or may not be directly related to the medication.) The second reason being that I am not feeling any better. There are good days and OK days. AThe ratio of good to OK favors OK. I’m still not experiencing ‘bad’ days. Three Advil every six to eight hours combined with two Percocet when I go to bed and occassionaly 1 Percocet in the morning and/or during the afternoon and I get through each day.
For now, I march on as always. I have approximately ten days before I return to Boston and I plan to fill those days with a lot of living!

Prostate Conditions Education Council Hosts 22nd Annual Awareness Week

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Sorry, I’m a little late in posting this message. There is still time for a free screening at several locations throughout the US, the details are below.
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Prostate Conditions Education Council Hosts 22nd Annual Awareness Week, September 18-24;
As the most common cancer and second leading cause of cancer death among American men, it’s important to be aware of the resources currently available to detect prostate cancer.  While experts continue to explore the benefits of prostate cancer screenings, the Prostate-Specific Antigen (PSA) test and Digital Rectal Exam (DRE) remain the safest routes to detecting the disease in its earliest stages – when it’s most treatable.    This year the Prostate Conditions Education Council (PCEC) – a national organization committed to men’s health and a leader in prostate cancer screening – continues its 22-year tradition of coordinating free or low-cost screenings to encourage men to protect their health as part of its national Prostate Cancer Awareness Week (PCAW).  This year’s PCAW takes place between September 18-24 with screenings available at hundreds of sites across the country.  Men can find the sites by visiting http://www.prostateconditions.org/screening-site-finder or calling 866-4PROST8.
“In many men, prostate cancer is an aggressive disease that is most successfully treated when it is detected early on,” said Dr. E. David Crawford, Head of the Urologic Oncology Department at the University of Colorado Health Sciences Center, and Founder/Chairman of the PCEC.  “As the research community explores various methods to detecting the disease, I continue to encourage men to play an active role in their health by looking to those trusted sources of prostate cancer testing – the PSA and DRE.”      During PCAW, men are offered a baseline PSA blood test and a DRE administered by a trained professional.  Many screening locations also offer testing for cholesterol and testosterone, as many factors play into overall men’s health awareness and a man’s risk for prostate cancer. 
PCEC recommends that after 35 years of age, all men should work with their doctors to determine a screening schedule that is right for them.   Not only does PCEC encourage yearly screenings after the age of 35, but also overall health awareness to lessen the risk of prostate cancer.  Every year PCAW brings additional attention to the prevention and treatment of prostate cancer by dedicating “Six Days of Prostate Cancer” to key points for men to keep in mind as they pay attention to their health.  PCAW screening sites are also equipped with a variety of free informational materials that will help guide men in improving their overall health condition.  “PCEC is extremely proud of our commitment to improving men’s health,” said Wendy Poage, president of PCEC.  “Since the first PCAW in 1989, the program has helped to screen nearly 5 million men in the United States, and this number continues to grow both at home and internationally.”  
PCAW’s overwhelming success in the United States has not only helped to safeguard the lives of American men, but has also influenced prostate cancer detection initiatives abroad.  In fact, this year will mark the first prostate cancer screening event in Japan where free or low-cost screenings will be made available to more than 100 men at the Showa University Hospital in Tokyo, Japan.  “Japan is a country where prostate cancer incidents are on the rise, and screening rates are low.  It’s critical that we recognize the importance of early detection and the role that screening can play,” said Dr. Takashi Fukagai, coordinator of the prostate cancer screening at Japan’s Showa University Hospital. About Prostate Cancer Awareness WeekThe Prostate Conditions Education Council organizes hundreds of free or low-cost screening sites annually for more than 125,000 men across the United States and internationally. 
To date, the program has resulted in nearly 5 million screenings.  To find a PCAW screening site near you and for more information on prostate cancer, please visit http://www.prostateconditions.org/screening-site-finder or call toll free 866-4PROST8.  You can also join in the conversation by searching for the Prostate Conditions Education Council on Facebook or 4prost8health on Twitter.   About Prostate Conditions Education CouncilA national organization committed to men’s health, the Prostate Conditions Education Council (PCEC) is the nation’s leading resource for information on prostate health.  The PCEC is dedicated to saving lives through awareness and the education of men, the women in their lives, as well as the medical community about prostate cancer prevalence, the importance of early detection, and available treatment options, as well as other men’s health issues.  The Council – comprised of a consortium of leading physicians, health educators, scientists and prostate cancer advocates – aims to conduct nation wide screenings for men and perform research that will aid in the detection and treatment of prostate conditions.  More information is available at http://www.prostateconditions.org/. 

UPDATED: The ugly truth

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The pictures below are a comparison of my first and most recent bone scans. The picture on the left was taken in Boston last month. The one on the right was my original bone scan from February of 2005.
Both cause me to take a deep breath and acknowledge just how serious my situation is.
I’m not going to speak to 2005, it was a long time ago and it is water under the bridge.

However, last month’s scan, as I wrote here before,  was and is a bit difficult for me to look at.

The areas of most concern to me are: the base of my skull, right shoulder (the scan is from the back), left lower femur, upper ribs (both sides) and spine. It doesn’t leave much NOT to be concerned about! You can probably imagine why, after seeing this last month, I decided to stop playing disc golf for a while. In closing, I would like to add – ‘Come on medication!!’
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I love the double entendre, today’s post is a triple! Here is the second part.
After receiving my two shots yesterday, we asked the nurse to check on my PSA test.
It was ready for once and as she handed the printed page over she commented, ‘wow, it really went down a lot!’ She hands me the print out and it shows my PSA at 71.4!  Mary started to get really excited, but I cautioned that there must be something wrong. XL-184 doesn’t impact PSA to this degree, and surely not so quickly. I had taken 14 doses so far. We stopped by the Oncologist’s office before leaving where they confirmed, the the machine in the lab errored and the decimal point was in the wrong place (Oops!!!!!!!!!!!)  The real number (unfortuantely) is listed below.
So here is today’s third ‘ugly truth’, my PSA for the past 18 months. On one hand, because our focus is on the current trial (XL-184), we are not investing much energy in dwelling on the numbers. Our hope lies in the new med and that is where we are focused. The trial uses the scans to measure the success of the treatment and the first updated scans will not be done until October 11th. On the other hand, the PSA trend is very concerning. Below is snapshot of the PSA trend and treatment changes for the last 18 months.

The Oncologist office called this morning. Apparently the lab was REALLY screwed up Monday. They re-ran my PSA three times. It turns out it was 595, not 714. Quite a difference and quite a relief!

The true warriors

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While I was quietly having a little self-celebration for making it four days without Advil or pain meds, I received updates on a few friends whose Prostate Cancer battles have taken new turns.  For the first time in several weeks I was able to get through four straight days without taking Advil and sleeping without Oxycodone. Last night the streak ended when the pain returned in the back of my rib cage, where it continues today. I am leery to even mention my aches and pains after the news I received on my friends Eric and Terrance.
I met Eric at a Prostate Cancer conference in Los Angeles back in 2006. A now retired firefighter and motorcycle enthusiast, Eric recently began having severe back pain that landed him in the hospital. It initially appeared to be related to PCa and though he still needs to meet with a few other specialists, the source of the pain appears to be from an old accident and not the cancer. Skipping the details, his T4 vertebrae is collapsing and pressing on his spinal column. I can imagine all the scenarios that must have gone through his mind in the last few days, attributing everything to the cancer. Though now that it appears that it is not PCa related, that does nothing to relieve his pain. Eric, God’s speed brother, I’m praying for you.
The second person is Terrance. Though just two years into this journey, this disease is wreaking havoc on his body. Though he somehow found the strength to go salmon fishing the last several weeks, he now faces surgery to relieve the pain that is apparently being caused by swollen lymph nodes and an enlarged prostate. If that wasn’t enough, this will be followed by chemotherapy to fight off the advancement of the prostate cancer. Terrance – I pray for a speedy recovery and that you are back casting lines before winter!
I share these stories and ask that you spend a minute praying for or sending positive energy their way. My little bouts with Advil, mild pain meds, etc. are nothing compared to what these guys are going through right now. These are the true warriors.

Another lap begins

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I apologize upfront but prepare yourself for a cliché ridden post.
For some people diagnosed with cancer, their journey can be more of a sprint. They have treatment(s) and then try to figure out how to live between check-ups and the 5 year ‘all clear’ milestone. This is true of many cancers survivors, not just those diagnosed with prostate cancer. There is no judgment in my observation, I’m just pointing this out as a way to contrast the experience to my journey.
My journey is a marathon and a mega-marathon at that! Imagine you run, and run and run until you are almost completely exhausted physically and mentally. Then, all of the sudden you round a corner and there is the finish line. As you cross however, it is merely to begin another lap and not to break the tape and throw up your arms in joy. For me, and the other survivors in similar situations, when we cross the line, we know there is no celebration. For us, we have to suck it up, dig down deep and begin another lap around the course, the course that is our treatments.
So tomorrow, when I get off the subway in Boston and cross the street (the finish line) and enter the hospital to begin my next lap, I will suck it up once again. I will dig down in the depths of my soul to find the strength, the courage and the hope needed to get me through this next lap on the journey. The terrain will be tough, there may be storms, the headwinds will stall my progress and the tailwinds will help me along. I will complete the lap.
There is a question I constantly ponder. The question is once again going to remain unanswered for the near term and it may only be revealed in the months ahead – ‘The next time I cross the finish line, will I be celebrating or will I once again dig deep and trudge on and on for yet another lap?’

34,559 minute countdown

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Way too much going on in our world this week. I am currently enjoying a few minutes of alone time at a local coffee shop.

On Monday Mary had a surgical procedure that we had put off for nearly a year. Details are for her to share, not me. I will however add that she showed me inner strength that I never knew existed, and remember we have been married for 20 years! Last night after bringing her home from the hospital we got her settled on the sofa and I went up stairs to put a few things away. I couldn’t have been up there for more than 2-3 minutes. I turn around to go back downstairs and who is standing there? Mary! She wanted to lay in bed and not on the sofa while at the same time test her ability to get up the stairs. She has a few weeks of recovery ahead of her but she’s well on her way.

I need to thank the “P” family for the dinner and other food to munch on, it was SO much better than the chicken noodle soup she was going to eat! Also, thank you everyone for the flowers!

School starts tomorrow and cross country practice started on Monday. I’ve never been a runner and am really glad Brad likes it, I wish him well. High school is going to be a great challenge for him, I know he will do great and these 8 semesters will just fly by! (he doesn’t like me to say to much about him here so I’ll leave it at that, you read between the lines).

I was able to play disc golf again on Sunday and improved my score by two strokes from the week before. Monday however was the beginning of a new pain incident. As with the past it has been controlled with Advil every 8-10 hours, however there were times that even the Advil was not quite enough. I just looked at Mary and realized I needed to tough it out. this morning is so much better so I’m hoping the worst is behind me for now.

The combination of the new medicine I started in June, along with the Prednisone withdrawal are the cause, well that and the increase in the cancer activity. With thirteen days until my next trip to Boston, I can now see the light at the end of the tunnel and it no longer appears to be a freight train!

Beantown

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Sunday night Mary, Brad and I flew to Boston. The purpose of the trip was an appointment at Massachusetts General Hospital on Monday afternoon and bone and CT scans on Tuesday.

We arrived a little late on Sunday evening, so we just got some food to go and hung out in at the hotel. Since my appointment wasn’t until 3pm, we walked around the neighborhood. A member of the hotel staff recommended a local cafe, 2nd Street Café. All I can say is awesome sandwiches and wraps!

As we are accustomed, we arrived at the doctor’s office, checked in, were shown to a room and waited, and waited etc.. The meeting with the doctor was encouraging, and unless something really odd shows up in the scans, I will begin the trial on August 30th. We will know if I qualify for the trial next week.

Monday night we went to Fenway Park to see the Red Sox play the Cleveland Indians. It was a long day for everyone but they stuck with me until the 7th inning. Also, we had to be back at the hospital at 8:30 for blood tests and scans so we didn’t want to be out too late.

I’m not sure what happened, but somehow even after receiving my four inch medical file, someone forgot to provide the pre-medications for the CT scan. Since I have developed an iodine allergy, I have to take Benadryl and prednisone starting the night before. I guess we should have remembered too but we had a few things on our minds. The bone scan went off without a hitch but they had to perform the CT without the contrast. I was told the details of the image just won’t be as well defined as with the contrast.

I was done by 1:00pm so we took the subway over to Kendall Square (near MIT) and then took the subway out to Harvard. We walked around for about an hour and the campus was quite stunning. I hope the environment provided Brad some encouragement and inspiration, not that he needs any!

After Harvard, we headed back to the airport for our 7:25pm flight back to Kansas City. A small storm delayed the arrival of our plane so we didn’t get back to KC until a little after 10pm. When we left Boston, it was in the low 80’s and quite enjoyable, while in Kansas City the high was 110 yesterday! When we stepped out of the terminal last night, it was almost like sticking your head in a hot oven! I know we are all ready for this heat to break!

I’ve been here before

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This morning I’m sitting in the waiting room at the cancer center and it came upon me that I must have been here at least 100 times. Not at this particular facility, but over the past six years, I have sat in medical facility waiting rooms well over 100 times.

This observation came to me as I looked around and noticed the others, waiting themselves. Those with bandanas are obviously grizzled veterans like myself. Then I witness the groups of families. Maybe mom, dad and one of their older children. They pick up and read the pamphlets and tend to be a bit more talkative than those who’ve been here before.

Each of us in this waiting room are not only in a different stage of the journey, but we travel the road that is the journey differently. Just this morning I was reading yet another story about the link between red meat and cancer. As I observe fellow patients, I am certain many of them skipped over the pamphlet that promotes the important link between nutrition and cancer. My remark is not intended to be snide or disrespectful, I just find it difficult to imagine myself, in this battle, still eating and behaving as I did before cancer.

A good, snappy analogy eludes me this morning. I know I’ve spoke of this in previous posts, but it really gets to me. I just want to sit next to people and try to get through to them and try to convince them that it is in their best interest to follow a low fat diet.We have so little in our control, diet is one thing we can try to do to help ourselves.

I pray that they eventually realize how important diet can be in fighting cancer.  I know most won’t change, and some simply just don’t want to.
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In closing I should report that my Doc in Atlanta diagnosed my back as a muscle pull. It inially started a few days after I played disc golf (after a two month lay off). I followed that up by continuing working out each morning. Sometimes I can be a little stubborn. After not working out for almost a week and being extra careful, I’m happy to report I’m 48 hours without Advil and last night I slept better and without a heating pad for the first time in over a week. Thankfully, problem solved.