Looking ahead

I was going to add an end of year post about all the things that happened in 2011, then I decided it is all documented within the blog already. I also decided against it because frankly 2011 kind of sucked. Sorry, I have no polite way to say how I feel about the last twelve months.

This post however is about looking ahead to 2012. The last two weeks have brought further improvement to the fatigue and nausea I have been fighting. Things are not 100% but they sure are better. I just need my appetite to return to normal so hopefully I can put on some of the weight I lost. I was able to walk with the disc golf crew both Wednesday and this morning and that felt wonderful both physically and mentally.

I want to keep this short so in closing I wish each of you a happy and blessed 2012!

Merry Christmas!

As Brad and I prepare for our Christmas celebration, we would like to share with you our appreciation and dedication to David.  Our seven year journey since David was diagnosed with advanced prostate cancer has taken us on an emotional roller coaster ride, but more importantly, it has allowed us to grow closer to each other and we have learned to appreciate each day.

Starting the FLHW foundation was solely due to David's vision and his desire to make a difference in the prostate cancer community.  As we learned that there were limited treatments for a man with advanced prostate cancer, we all agreed that we wanted to try to support the research for new and/or improved treatments, and ultimately a cure. As we began this new journey of our life, we were inspired by the Prostate Cancer Foundation (PCF).  Not only did we partner with them to support the medical research and promote the importance of early detection, but we also turned to PCF to help us to understand what our treatment options were. PCF also provided resources for us to learn what we could do to manage David's disease. Ultimately, what PCF did for us was to give us hope.  One of the darkest days a cancer patient can have is a day when he/she must struggle to find hope.

Enclosed below is a link to PCF's annual report.  David's story is featured amongst several other PC survivors.

http://www.pcf.org/site/c.leJRIROrEpH/b.7908621/k.A115/Our_Stories.htm

Brad and I are very proud of David's positive approach to battle this disease and his selfless determination to help others along the way. Of the many blessings we are thankful for this Christmas, we are most thankful for being together as a family.

We would like to wish each of you a very Merry Christmas and a hopeful, happy, healthy New Year.

God Bless,
Mary & Brad

Pretty close to normal

For all the issues I've been having lately, today, for more than a few hours, normalcy returned to our lives.

It started early this morning when I decided I would hit the disc golf course. No, not to play, just to walk along and visit with some of the guys. It only got better when Mary, for the first time ever, decided to join me. The crowd was light but it was already over forty degrees when we got to the park. I was only able to last until the 11th hole for two reasons; first I didn't want to overdue it and two, the easiest way out of the woods is after the 11th hole.

We went home, I had a quick 30 minute nap and then it was time to get ready for the matinee show for Trans Siberian Orchestra. Brad, Mary and I had a great time,but it was not at all what we expected. I was expecting something more along the lines of Mannhiem Steamroller, this was more of a rock opera performance, with some seasonal music added in occasionally. The lights and special effects component was very, very impressive.

After the performance, it was off to the Country Club Plaza and our favorite restaurant, Houston's. When we walked in at 6:30pm there was already a ninety minute wait.! Being seasoned veterans at Houston's, within five minutes we had seats at the bar and were placing our orders for dinner! The service we received was as good as having our own booth in the dining room.

What a perfect, busy, entertaining, and nearly normal day!

Thoughts from Gate A2

Well the trip back and forth to Boston went like most, uneventful. Mary took me to the airport for the 7:00am flight and then it was just a quick subway ride to Mass General.

I talked with Dr. S about reducing my dosage and he was willing to do so, however, it came with the following stipulation: if we lowered the dose, we couldn't later increase it if we needed to. He left it up to me, but his opinion was to maintain the 75 mg level since the bone pain has subsided so much. If the fatigue and nausea become any worse, he said to call ASAP.

While yesterday was one of the better days I've had in weeks, today was a drain from the start. As I write this I still have an hour before the flight boards and 90+ minutes before we depart. Though the flight home is direct, it still takes nearly four hours flying against the jet stream. I've never been able to sleep on planes, but tonight could be an exception. The nausea has been mild today and I have just been pushing through the fatigue all day.

The good news is my appointments in Boston have now changed from every 3 weeks to every 6 weeks. So long beantown until late January!

It better be working, I pray it is

I haven't posted in a while because I am still struggling with nausea and fatigue. Though these are known side effects of the XL-184, it doesn't make dealing with them any easier. It is a constant, daily battle. I now have three different anti-nausea drugs and though they provide some relief, none of them is perfect. As for the fatigue, it has just become a recurring daily theme. Some days are good, others I spend a lot of time napping.

For now, I just have to fight through it until my next appointment in Boston. At that time I am really going to push for the doctor to lower the dose I am on to 50mg. I am not sure if the doctor will agree, but I plan on making a strong case. The nausea continues to cause weight loss (aprox. 23 lbs now) and the fatigue has just gone on too long.

Aside from these two wonderful challenges, we, like the rest of you, are trying to get ready for Christmas. I should correct that and state that Mary is trying to get us ready for Christmas. The house looks great and her shopping is well under way. This is one of my favorite times of the year and not being able to do much to help is really weighing on me. I want to do more to help decorate and shop, but as I mentioned above, it's just not in the cards right now. On Sunday I helped Mary and Brad cover our patio furniture and helped Brad run the extension cords needed to run some Christmas light in the front of the house. That consisted of twenty, maybe thirty minutes of very light work and I was zapped and had to returned to the recliner to recover. I've read a number of ebooks and seen a lot of NFL football, but I want some semblance of normalcy to return to my life!

I'll try to update the blog more frequently between now and the end of the year, God Bless you all.

November Review

After 12 weeks on Cabozantinib (XL 184) things are going OK. I wish I could say GREAT, but I am also not complaining!

I started the trial on August 30th with a 25 mg dose. During the first 6 weeks I didn't notice any side effects, however I did notice an increase in bone pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.

On November 1st my dose was increased to 125mg. This dose was determined per the trial requirements. We were concerned about that high of a dose. [At this time I was on both 2 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for a rough beginning on the month.

After trying multiple over the counter laxatives, I finally got a prescription variety that started working right away. On the flip side, after six days on the higher dose of the trial medication, I was experiencing nausea that was unbearable at times. The doctor suggested I stop taking the medication for three days until the constipation and nauseas was fully relieved and then a smaller dosage would be suggested.

With both the nausea and the constipation under control, I started the trial meds again on November 10th at a new dosage level of 75mg. The following twelve days were spent readjusting the pain meds, laxatives, etc., and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few smaller tumors that had cleared up completely and most others had noticeable reductions in size.

75mg may still be too high, I still have occasional nausea issues. I'll stay on top of this over the next few days and talk to the doctor if it continues. We are trying to work around a limited appetite and I am suffering from fatigue. I have lost about 12 pounds. The best news is that I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.

Happy Holidays everyone, peace be with you all!

This one stings

Yesterday the prostate cancer community lost another warrior when Brian from New Zealand lost his battle.

Brian and Kim reached out to me right after his diagnosis and we stayed in touched regularly throughout his courageous battle.

Here is something Kim sent me almost three years ago to the day (11/28/08) "As you know it is one hell of a roller coaster ride -this prostate cancer. I'm just glad he is still here. It's not an easy road when cancer comes into your life but..I guess if things were easy we would take everything for granted and never really understand and savor the special things in life."

Brian, I never had the opportunity to meet you in person, but you were a brother for sure. Kim, words will never fill that void, but may the peace and grace of God be with you during this difficult time. You are in our thoughts and prayers. Brian will be missed.

When a Buck is worth millions

I'm alone in the house tonight, Mary and Brad are out running errands. I'm not real fond of being alone, in fact, I have grown to detest it. I don't need a lot of conversation, just the simple presence of others, their nearness makes all the difference in the world.

I should clarify that I am never alone, he is always near to me. In this case, I am not making reference to God but to Buck. Buck is our 95 pound black lab. When we got him  in 2002 I was 'in between" jobs, so back then I was with him 24x7. He was house broken with in a week. Labs are something else, the finest dog one can own.

This pictures is just a typical moment in my day with Buck. Nose on the bed for a few seconds as he checks to make sure I'm doing OK or if I need anything. He's so lovable.

Thanks Buck, I'm good right now, I'll let you know if I need anything.

Too short

It's been a heck of a month, and yet a week remains!

One of our prostate cancer brethren, Terence in Seattle, started chemo. His second treatment is in a few days and so far things are going well. Please understand that much like myself, Terence is dealing with bone tumors and pain, raising psa and other PCa related issues.  His pain was excruciating and the good news is, he has seen some relief there is just a few weeks.  I hope the future brings Terence more relief and many, many years of peace and happiness with Sheri and the grand kids.

In early October I added a post regarding our golf tournament (Lucky number 7). The gentleman to my right in the first photo is Bruce. Bruce and I have known each other since high school, well over thirty years. After a while, life took us separate ways, so it was great when Bruce drove in from St Louis to play in the tournament and have dinner with Mary and I.  Two weeks ago Bruce went to his doctor to  have a few things checked out. That appointment led to a triple by pass two days later.  Bruce has children under ten years old, so that adds to the complexity of the recovery process. I wish Bruce and Lisa peace and joy as they follow their journey down the road to recovery.

I have another good friend Bill ,whom I've know since I used to kick his butt in first grade math flash card wars! He's to my left in the photo from this post (Golf 2010). It turns out last week Bill had his own heart scare. The incident happened while he was traveling to St Louis on business and required an overnight stay in the hospital and a battery of testing. Fortunately, the results were negative and his heart appears to be functioning very well.  But it certainly created a stressful 36 hours of concern! Bill has three beautiful daughters. Bill, his wife Enid and all three girls are always in my prayers.

These are just three things going on in my life that have nothing to do with my own battle. There are others I could add, and many, many of you, the readers are expericing similar events yourselves. I share these as a reminder of the how fragile life is and as a way to ask you slow down around the holidays next week and next month. Enjoy time with your family and friends...life is too short.

A brief update

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

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.

Where are you going?

On my way to Boston, I obviously had a lot on my mind. This is what I wrote on the plane yesterday morning:

When traveling and someone asks, "Where are you going?", I simply want to reply, "Nowhere, I'm here for quite some time, if I have anything to say about it.". These last seven years have included so many ups and downs, twists and turns, I have become somewhat immune to emotions, the negativity, and times immune to the seriousness of the ramifications.

I just carry on until the next set back. Bad news? I just regroup, lay out a new plan or adjust the current one. The point is, I move forward at a slow steady pace. I'm not 100 percent sure what actually will happen three hours from now. My instincts tell me that today my medication will be increased, but who actually knows.

A day later, today I have a bit more to be optimistic about. Yes the dosage of Cabozantinib (XL-184) was increased (from 25 mg to 125 mg). I took my first dose of the increased quantity yesterday afternoon and my second this morning. Last night I slept better than I had in weeks. It might have been exhaustion, it might have been psychological based on a feeling of relief, having hope that the new dosage will be effective and I will be able to resume to a better quality of life with less pain and less fatigue.  Whatever it was, it was great. I woke up this morning and realized I hadn't had in pain medication in twelve hours. That too was a first in several several weeks.

The doctor appointment fell right in the middle of my schedule for pain medications and I needed to have an empty stomach so I could take the first dose of the XL-184 while at the doctors office. Additionally, I had to wait nearly two hours for the new trial drugs to be delivered from the pharmacy. Consequently, I was four hours late taking the pain pills. I swear I could feel them working within 10 minutes as I rode the subway back to the airport. My flight back to Kansas City was direct but better than that, Mary and Brad were waiting to drive me home! That was the perfect way to finish a very long day.

The side effects that are most concerning are excessive exhaustion and complete loss of appetite. These are supposed to surface within 24 to 72 hours, if at all.  I remain optimistic, as patients in previous phases of the trial have found it to be generally very well tolerated.

My next trip to Boston is not for three weeks, in the mean time..... I'm not going anywhere!

Condition and recognition

I have spent most evenings over the past week trying to get the timing of Advil and Percocet down to a science. I haven't earned a masters degree yet. Some days and nights have been fine, with very little to no daytime pain and decent enough sleep. There have been days of heavy fatigue and nights of tossing and turning and what amounts to maybe 3-4 hours of good sleep. Sleep on these nights comes in fits and starts which in turn leads to fatigue the following day.


My return trip to Boston can not come soon enough! I will be back for my next appointment in Boston on Tuesday. We anticipate the doctor will  request my dosage be increased and we are hopeful that the new dose will offer me relief from the pain and attack those tumors in my bones that are causing me discomfort.

On another note, you may remember this story from earlier this summer.
http://www.435southmag.com/recentposts/2011/10/14/the-buddy-system/

I received word earlier this week that the writer, Kimberly Winter Stern, has been recognized for the article. The High Plains Division of the American Cancer Society recognized her for excellence in journalism. 

Here is the link, scroll down to the 'Magazine' catagory:
http://www.cancer.org/MyACS/HighPlainsHawaiiPacific/AreaHighlights/high-plains-media-awards-winners

Kimberly, I think I can speak for John when I say thank you for capturing the story in such a perfect way and for sharing in our passion for finding a cure for prostate cancer.

The short version

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!

Friends doing their part

At this weekend's Kansas City 1/2 marathon, this is what many of the runners saw... the race bib on Paige's back! Paige contacted me early in the summer and said she was training for the race and wanted to raise money for FLHW. Initially she set a goal of $1,500 but by the time she finished, she actually raised nearly $2,100!

Paige, thank you for supporting our cause and contributing to the hope that we share through the research for a cure for advanced prostate cancer.  Words do not adequately express my gratitude!

Back in March I was contacted by a woman from Maryland. She explained that her brother as well as her husband were both battling prostate cancer. Mary also explained that she owns a jewelry store (http://www.jrcjewelry.com) and wanted to know if I would send her some of the blue FLHW bracelets in order for her to sell them to her customers.  Over the next few months she sold several hundred bracelets and raised a few hundred dollars. This was just the beginning!

Early in the summer she informed me that a supplier had donated a beautiful diamond and sapphire bracelet for her to raffle to facilitate further fundraising for our cause. After selling tickets through September, the picture to the left is her brother Richard drawing the winning ticket. When it was over, Mary and the customers of JRC Jewelry had raised $5,000 for FLHW!

Mary, Richard and everyone involved, all I can say is, you are all awesome! 

When being a little sad is cleansing

On a recent trip, a few songs came on my iPod that made me sad. However, because I love to listen to each of them for a unique reason, I let them play. I guess maybe sad isn't the right word...perhaps melancholy is a more appropriate description.

As with most music I listen to, I just listen, I don't memorize lyrics or go read what they mean. It is usually the music and feelings they evoke that gets to me. So here is a list for you to review, or comment on if you desire and maybe go buy the song yourself if you choose.
- James Morrison: The Pieces Don't Fit Anymore
- Oasis: Sunday Morning Call
- Lifehouse: Breathing
- Foo Fighters: Times Like These
- Finger Eleven: One Thing
- Train: Drops of Jupiter

These six are just a few that rotated through this particular flight, there are many more. Each of these, for it's own particular reason, conjures up emotions. There are times when these emotions manifest into sadness and perhaps tears. To me this is perfectly acceptable because amongst other things, having cancer has taught me to accept and embrace my emotions. God tests us on a daily basis and in a number of ways and these songs help me become more energized to fight on.

Lucky number 7

On Friday, September the 30th, we held the seventh annual FLHW Charity Golf Tournament. As with the six previous years the weather was perfect for the event!

The day included reunions with old friends.

It included the sharing of valuable information on Prostate Cancer screening and the need to live a more active and healthier lifestyle.

Though a few friends could not make it, we were honored with their support for the cause of better treatments and additional research for a cure. 

 We took the time to celebrate friendships.....

... and to spend time with friends and family.








In the end, one team came was victorious, but all of us involved as well as the cause were all winners on this day!!

From the far corners

As I leave for my six week check up in Boston I can feel the strength of so many of my friends and family. I also feel the support from a distance. Recently I have received quite a few emails and blog comments from locations far, far away.

Previously I wrote about a young man from Uruguay who wrote me just days after his father passed. His kind words touched me very deeply and emotionally.

I have also quoted Ivan from Australia. He has become like an old pen pal, back before computers and email. I so look forward to his emails. His prose is beautiful, encouraging and truely from the heart.

Then there was a note from Naples, Italy. Raffaele, only 24 years old, who wrote to say how much enjoyment he and his family found in my blog. I was once again dumbfounded at the reach of this journal.

Most recently I exchanged messages with Melvyn from England. His words helped in ways I cannot express.
"I think it is harder for our loved ones and don't know how my wife copes. You have your disc golf and I have my horse - I do my thinking and a lot of praying whilst riding the quiet English countryside and thank the Lord for the blessings He has given me in life so far."
What a beautiful picture he painted for me as I anticipate the results of blood work and bone scans, to be riding a horse through the English countryside!

Prostate Cancer Awareness Part II

While I was at the television studio last week, Curtis Jay of KSHB-41 asked if he could interview me for his weekly 'Faces of the Community' segment. Below is the piece that ran at various times from Thursday through Sunday. Thanks Curtis and KSHB-41 for helping raising Prostate Cancer awareness in our community.

Prostate Cancer Awareness Part 1

Last Wednesday I had the privilege of being interviewed by JiaoJiao Shen of KSHB-41 here in Kansas City. She did a great job and as you will see in the video, she did her research before the interview. Many thanks to JiaoJiao and Channel 41 for raising Prostate Cancer awareness.

Interview on 9-28-11 Midday News

A Capital affair

On Tuesday the 20th, I left for my visit to Boston at 4:30am. Though this was my first check-up after starting the latest clinical trial, it was just a check-up and only standard blood tests were run. I won't  get a view of my scans until I return on October 11th. The Boston leg of the trip and the visit with the doctor were non-eventful.  When I finished I was then off to Washington, DC for 'The Summit to End Prostate Cancer". I attended the same event last year, but was more excited to return in 2011.
Aside from the opportunity to meet and speak with our elected officials (Kansas Senator Pat Roberts),

I was also anxious to finally get to meet in person a few on-line friends that I have know for years.
First was Tony from Las Vegas. We were diagnosed around the same time. He initially contacted me via email, but over the years we have talked on the phone, instant message and of course Facebook. He's a great guy and a wonderful champion for our cause. I hope the people in Las Vegas realize what a resource they have in him!

Finally I visited with Sherry G. from New Mexico. She lost her son to prostate cancer when he was only 36. Sherry, much like Tony, is an outspoken advocate for all men. Not just those fighting the disease but also those men that should be and need to be screened.

Though tiring, it was a wonderful three days in Washington, DC. To Congressman Yoder and Sentors Roberts and Moran - please do your part and continue to fund cancer, and more specifically prostate cancer research.

Prostate Conditions Education Council Hosts 22nd Annual Awareness Week

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.

~~~~~~~~~~~~~~~~~~~~~~~

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/. 

Focus, from another continent

In my mind I have been contemplating several variations of this post for a few weeks. I received a note from a friend and in it this person referred to me as a hero. At first I wanted to grab a keyboard and proclaim "I am no hero". For whatever reason, I just want to share, and hopefully benefit others with the my life experience. I don't think I can carry the weight of that label. This clearly was not their intention, but those four letters stuck with me.

Life got the best of me this week and between work, doctors appointments and family activites I was not able to take the time to sit down and address this topic. Good thing because today I received a wonderful note that put it all in focus. DG, a young man from Uruguay sent me the note below. I have included it here with his permission.


Dear David, I followed your site and fb for a couple of years because my dad have pc.
2 days ago he lost his fight, six wonderful years fighting shoulder with shoulder with a exceptional father.

I write this mail to say how much helped us yours histories, your knowledge and your courage.
Maybe i dont wrote you before because my english (with the years is making worst and worst) but I still keeping reading your post every day, sharing your happiness and sadness, and this was keeping me pushing and pushing until the end.
 
I had the lucky and pride of keep my dad in my arms during her last travel with mom,my brother,my wife and my little daughter (Her princess ) in our home.
Now is time to rest for dad and for us.
Please keep fighting, i will keep reading

I cried, seriously. Perhaps it's the rainy morning. Maybe it is recent news about PCa brethren facing tougher times ahead. Maybe it was the wonderful, complete day I had with Mary and Brad yesterday. What ever it was, his words touched me in a way I definitely needed at this time.

I also sit here and wonder why, two days after he lost his father, DG would write to me. Why? Maybe becasue this blog is more far-reaching and meaningful than I sometimes give it credit for. I am honored to use this medium to reach out to those touched by cancer. I'm just a guy with Prostate Cancer that, at the beginning of my journey, decided to share my battle with cancer publicly. If doing so reaches nearly all four corners of the world and I can bring just a little bit of peace to one man, one family, then we all are blessed.

DG, you and your family will continue to be in my thoughts and prayers.
I dedicate the following prayer to your Father:

Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen. 

UPDATED: The ugly truth

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 11^th. 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

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.

The starting gun

On Tuesday I was up at 4:15am and out the door by 4:40am in order to get to Boston, MA for my 1:00pm appointment.

There is nothing eventful to report about the travel, a connection in Atlanta, on time arrival,  45 minutes on the bus/subway and I promptly walked into the doctor’s office.

Due to the nature of the clinical trial, the vampires required 9 vials of blood and a urine sample. The results of the blood test are required before the trial drug can be released. The lab was able to turn the blood test around in an hour. During that time, I met with the Nurse Practitioner and reviewed the blood test, CT and bone scan from August 2^nd. There were no surprises in the blood work and CT scan; PSA was 440 (expected) and CT showed swollen lymph nodes in my lower abdomen (also known).

The bone scan on the other hand was, for the lack of a better term, frightening. I have seen and studied my bone scans since I had my first scan in February of 2005. This scan showed extensive areas of new tumors where there have never been tumors before. I was not surprised, with my PSA level being as high as it is for so long, what I saw was somewhat expected. That being said, seeing the image on the screen. actually looking at the cancerous tumors in black and white and acknowleging the fact that you are looking at yourself, it was rather shocking and a bit difficult to quickly accept.

The highlights, or low lights in this case, are as follows:

• -       Extensive areas in upper to lower mid spine (much more than before)
• -       Left lower femur shows a rather large new spot
• -       Right shoulder and collar bone show new areas of growth
• -       Upper right ribs show quite a bit of new growth
• -       Several small areas on the vertebrae between shoulders and base of skull.

       These were the most concerning to me.

I ask you to let that sink in for a minute and perhaps re-read it.

 

The good news is that several minutes after reviewing the scan, the clinical trial nurse brought in my first 21 pills for the clinical trial drug, Cabozatinib or XL-184. The trial I am enrolled in is the third Phase II trial of the drug. The purpose of this phase of the trial is to gauge the effectiveness  responsiveness) of dosages. My dosage is 25mg. Aside from changes in the physical aches and pains I won’t know if the drug is working until new scans are taken on October 11^th.

After leaving the hospital I walked around the neighborhood (Beacon Hill) briefly before heading back to the airport. I wish I had more time and will try to make a point to check out more of the neighborhood on future visits. My friend Jason was in town at the same time but was leaving a bit earlier than me. We had discussed trying to meet my for dinner but he called to say he was running late and was barely going to make his flight. An hour later, after going through security and eating something I was walking around the terminal killing time.  Suddenly I felt a hand on my shoulder was quite shocked to turn around and see him standing there smiling! What a great way to finish a long and stressful trip! Jason - thank you for being there and being such a wonderful friend. We were brought into each other’s lives through fate and a hat, destiny can be a beautiful thing! When you look at the photo of Jason and myself, it’s hard to believe all of this is going on inside me. The irony of my life!

It’s Prostate Cancer Awareness month so please support the cause. You can do so in a number of ways; write your elected official and ask them to continue funding the much needed research, change your porch light to blue, Support any number of PC group, Encourage a loved one, friend or acquaintance to get tested. Most importantly, pray for all the men that are currently fighting and suffering from this dreadful disease!

Another lap begins

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?’

Come On Irene!!

Not the 80's classic by Dexy's Midnight Runners, but the Hurricane!

I thought before whining about myself, I should add that I pray for all the people, businesses, animals, etc. that lie in her path.

Though it looks like she'll pass through Boston on Sunday, I hope the havoc is minimal and by Tuesday morning, all flights are on time and travel to and fro goes off without a hitch.

Regarding pain management, Advil is down to two every twelve to twenty-four hours. I also have only had to take pain pills to sleep twice in the last four days. Tuesday can't get here soon enough!

My Compass

There are those people you meet in your life, you know the ones, teachers, friends, professors, etc., those people that have a profound impact on your life. I married mine.

She, without meaning to do so, changed me in so many ways. She also supports, encourages and helps me through the cyclone that has become my life.

When we met I was a wandering soul. I was working, had finished two years of college but had no long term direction or short term goals. Since then, I earned my undergraduate and graduate degrees, have a relatively successful career, was blessed with a wonderful son, a comfortable home and a non-profit foundation provides me with an immense sense of pride. The cancer battle aside, we are genuinely happy and content.

Now, more than ever, she needs me for that same support. I am with you Mary, I love you more than ever and I am here to help you get through your challenging times, as you have always been there for me. I am blessed that you came into my life over 24 years ago and am honored that you married me on that wonderful Saturday in August, twenty years ago.

Here's to many, many more years ahead for us to share.

Musical Associations

This morning I thought I'd play a game I call musical associations. It's going to do two things, expose my musical tastes and preferences (nothing new here) and allow me to free associate a part of a song with something that is or has gone on in my life.

First, I launch Pandora, the on-line music service. Today's station is 'K-SHE 95'. I created this years ago and for those of you not from St. Louis it was THE preeminent rock and roll station of the 60's, 70's and 80's. I moved away from St. Louis in 1990, so I'm not sure what happened to the format.

Up first: Ten Years After - 'I'd Love to Change the World'

This is from their 1971 album A Space in Time

The line that immediately stood out is this one, 'I'd love to change the world, but I don't know what to do, so I leave it up to you.'

Though a song written forty years ago, to me this is so indicative of the present. People find it easy to complain about this or that, but very few will stand up or take the time to make a difference. Perhaps they just don't know how to get started '..but I don't know what to do...'. Instead of sacrificing their time, energy, talents, resources '...they leave it up to you...'. Remember, I'm just observing here, not judging.

Next up: Led Zeppelin - 'Nobody's Fault but Mine'

A cover song from the late 1920's, also played occasionally by The Grateful Dead.

"I got a monkey on my back"

It's an old blues song that LZ added a heavy rock and roll influence to, as well as changed up the lyrics. Now I could have gotten the line "I got a monkey on my back" from a number of songs but remember how this works; hear the song, make the association. If I have to explain my personal monkey, someone hasn't been paying attention. I'd really like the monkey to just go away for awhile so I could live a normal life, or something that resembled a normal life. With ten days to go, I am feeling more anxious and more obsessed with the disease. August 30th can't get here soon enough. I know removing the monkey completely is not likely to happen, but perhaps I can get him off my back and he can walk beside me, though behind me would be better! 

Finally on came The Outlaws - 'Green Grass and High Tides'

This was the tenth and final track from their 1975 debut album.  

For me this song takes me back to high school. My brother Doug and I must have listened to this song a thousand times or more. For those of you not familiar with the song, it is a nine minute, forty-nine second southern rock classic. The wiki link above has a great write up on the song, but in a nutshell, it is a tribute to Jimi Hendrix, Janis Joplin and others. These lines from the song have always stuck with me: 

Those who don't believe me

Find your souls and set them free

Those who do, believe and know

That time will be your key

Time and time again
I've thanked them
They helped me find myself
For a peace of mind
Amongst the music and the rhyme
That enchants you there 

This morning music was my escape. I hope as you read this you consider three things in your life:

1) Do something for others, for strangers. Make a difference in someones life, people need to be nicer.

2) Get the monkey off your back. In my case it's cancer, yours could be a multitude of things, major or minor. Maybe it's just a phone call to a friend or family member that you should have made months or years ago. Don't wait, life is far too short.

3) Find an escape, spend time on yourself. Get away from the television, cell phones and computers; listen to music, read a book, take a walk, refresh your mind.

I now step down from my soap box .....  Sunshine came softly though my window today....

34,559 minute countdown

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!

In Like Flynn

Before the update, I was curious about the origin of the expression I used in the title, so I Googled it.

“The earliest known use of "in like Flynn" in print is in the December 1946 issue of American Speech. Penn State prof Ed Miller reported that students of his who had served in the army / air force during World War II used the expression to mean, "'Everything is OK.' In other words, the pilot is having no more trouble than Errol Flynn has in his cinematic feats."

Now, on with the show. It’s 100%, I’m in the Cabozantinib (XL-184) trial and I can start to take the pill on August 30^th. Relieved? Of course we are, but it really won’t sink in until I have pills in hand and take the first dose! The travel will be a little taxing on us, but again, I can go round trip in one day, and so far it appears as though the flight will cost around $200 each trip. The subway goes from the airport to within 25 yards of the hospital so no ZipCar will be required. I hope the time on the ground allows me to see a little bit of Boston and perhaps coordinate trips with a few friends for dinner, etc. I’m really looking forward to the new chapter in the journey.

Tomorrow I will see my local Oncologist for my monthly check up and a few shots. I’m not expecting my PSA to be anything but be slightly higher. This is based on the fact that I will have been off Zytiga for 10 days. Though I had a stretch of 8-9 days without Advil or pain pills, I did have to start taking Advil again on Tuesday. I’m only having to take 3 Advil every 12 hours and am thankful it has not progressed further. As I stated before, the time between now and when I start to take the new meds on the 30^th may be a challenge psychologically, but we'll get through it, and hope for a good response to the new treatment!

Back in the saddle again.

Tomorrow we hope to get the 'official' word about my acceptance in the Cabozantinib (XL-184) clinical trial. In the first week since I stopped taking some of my previous medications I can't tell any difference. If anything, I feel a little better.

I mention feeling a little better with a slight amount of hesitation. Although we received mixed opinions from the medical community, Mary and I are convinced that my recent bouts of pain are related to the two new drugs I started in June. 

The only proof we have is the pattern of the pain I experienced both times I received the treatments. Five days after the injections I begin to have back pain. The severity and location move around from low to high and side to side. Sometimes it feels likes it's my ribs, then my back, etc. It lasts between seven to ten days following the injections and then I have days and days of 'normal' activity. 

This past weekend was one of those 'normal' periods. I was even able to play disc golf on Sunday, and played pretty well considering I had not played in a month. I really miss playing twice every weekend but I'm not complaining, I'll take what I can get.

Three weeks and counting, I hope it flies by like summer did!

Beantown

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!

My Neverland

This morning I watched 'Finding Neverland', the story of James Barrie who wrote Neverland (Peter Pan). Based on the crocodile tears, this one hit a wee bit close to home. I don't mind sharing that fact. Yes, I cry during a good, emotional movie. For those of you that have been around here for awhile, you know that I have been known to cry while reading a book! There was just something about the story, it is a great movie I would recommend to all.

Tears, and the emotions that bring them to life, are cleansing. To me they are a release for tension or stress and there are times in this battle when that release is critical. We have a lot ahead of us this August. It all begins in a few days with a trip to Boston. That trip will involve tests, waiting, meeting with the doctor, waiting and we hope, time for a little fun. This doctor appointment and clinical trial I am attempting to get into is perhaps THE most critical point in this journey.

With my PSA count remaining high and the increasing amount of pain I have been experiencing, it is very important that I change treatment plans now. Without this tria,l my alternative is chemotherapy and radiation. Since I did chemo back in 2008, I have the experience, it does not scare me. The issue is chemo did not provide much benefit. As for radiation, this would address the pain, but has it drawbacks. Those include compromising bone marrow and therefore making a chemo treatment less effective, fatigue, short term relief and more.

I just continue to pray this path I find my journey taking is the right one. Not because of the finanacial and travel impacts or the possible side effects, but because the trial offers so much more of a potential impact on the state of the disease than the chemo/radiation option.

I'll provide more details once we return from Boston.

Whoa, where did that come from??

I have to start this post with a recap of the Warrior Combine event. Although the video link in my previous post did a great job of recapping the event, there are of course a few things I would like to say.

First, I need to thank Jason for bringing this idea to me in June of 2010. If it weren't for Jason, the Warrior Combine event would have never have happened last year or this year.  Next, I need to thank the participants. The video only begins to capture what these guys put into this event. I am envious of their abilities! Next my appreciation goes out to the FLHW Board and the other volunteers, I tip my hat to you as well. I appreciate your generousity to our mission and withstanding the exceptionally warm morning of July 23rd.  Finally, to Fox4-KC and John Holt, I am sincerely grateful for the coverage we received! It is personally so important to me to reach out to the men of the community regarding the importance of being tested, and through the time we were given on Fox4 news this Saturday, I am confident that our message reached many!

Jason and I had big plans for this year's event and although twenty three participants is not huge, we nearly doubled the participation from last year. Additionally, the event raised over $2,000! Jason and I talked yesterday and both agreed, it's not just about raising money...the publicity we received was priceless. There is no telling how many men we impacted with the message.

It's not too late to help out. We still have a few shirts left (Sizes range from medium to XL and XXL) and we have Warrior hats available as well.  Pictures of both are on the order page, available at:
http://www.flhw.org/2011-events/105-warrior-combines.html
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Now to the title of this post. Sunday I began to experience a lot of pain in my lower back and left hip again. It was nearly identical to last month, only more intense. By yesterday and through Monday I was taking four Advil every four to five hours and taking several Percocet in order to sleep. Even with the meds, sleep was rough. The good news is last night I slept much better and as of now, I haven't taken anything in over eight hours.

This is very similar to what happened after I saw the doctor in June. Five days after the appointment and injections, I experienced back and leg pain. Again, this month it was much more severe, but I really think I  have turned the corner!

Warrior Combine video

Here is some of the video coverage we got on Saturday!
Details and my thoughts to follow!

 

When good isn't good enough, then you get more

Tuesday was my four week check up with my Oncologist, along with the usual blood tests and shots. The appointment was uneventful for the most part, the doctor was away and we saw the Physician’s Assistant. She is great, but no decisions were obviously made with the doctor away, this was all expected from the last appointment.

Last month I switched a few drugs around; I stopped Lupron and started Firmagon (testosterone blockade), stopped Zometa and started Xgeva (bone strengthener). After making these changes four weeks ago I did have mild to moderate pain a few times during the weeks that followed. As almost always happens, the week leading up to the doctor’s appointment was as close to normal as I’ve had in a while. I felt great and remain that way this week as well. The side effects from the Firmagon shot (tenderness, redness and slight swelling at the injection site) seem to be much less than June. Or maybe I am just more tolerant this time around.

The exciting news is my PSA was actually down to 421 (it was 433 the month before). Though this is somewhat good news, the drug I started back in January (Zytiga / Abiraterone) is not having the impact we had hoped. However, I am very grateful for the result. An additional marker we track closely is Alkaline Phosphatase. Normal levels are approximately 40-110, mine had been between 50 and 60 for years. With the rise in my PSA this year, the AlkPhos has also gone up. According to one specialist my type of prostate cancer is creating PSA primarily via the bone tumors. Hence, my need to find a treatment that targets bone.

Speaking of treatments that target bone, yesterday we received a call from the doctor’s office in Boston. Without looking too far ahead, it was good news and we now have an appointment with the doctor leading the trial the first week of August. We are cautiously optimistic as there is not a guarantee that I will qualify for the XL-184 trial the purpose of this meeting is to determine if I am eligible. The appointment will include a blood test, a bone scan, CT scan and exam by the doctor.  Although I appear to be an ideal candidate on paper, things can always pop up. Once again, we are cautiously optimistic!

Assuming that the tests and the appointment go well, I will have to return 4 weeks later to start the trail. The delay is where this gets a little risky. I will have to stop taking a number of medications for those four weeks. This includes:

- Zytiga (Abiraterone) and Prednisone (the current hormone blockade I have been on since January)

- Lovenox (a blood thinner I have been on since last fall when I was on DES and had several clots in my leg)

- Finisteride (I have been on this drug for almost 5 years, the short story is it blocks a form of testosterone)

Stopping the blood thinner is the least risky in my mind. The clots I developed on two separate occasions can be attributed to my treatments at the time, one being Taxotere and one being DES. I have been off DES since December.  As a precaution, Dr. V suggested I add a low dose aspirin to my daily regimen. Finisteride is also a minor risk since my testosterone level is always extremely low. Zytiga is the big risk but the potential of this new drug is so great that it is a risk I am willing to take.

So if the crazy schedule of ours wasn’t busy enough, now we add a trip to Boston the mix!

Plans make a bitter pill

I guess a little medical update might be appropriate right about now...

I'll start with what I 'know' instinctively based on how I am feeling and sense what is going on inside me. First, I have several swollen lymph nodes on the left side of my neck, where the neck and shoulder meet. These showed up in my last CT scan (December). They have increased in size, I can feel them but they don't bother me. If they became a problem surgery or radiation are options, but they are not a problem at this point. My guess or instinct tells me there are a few others in my abdomen that have increased in size. This is soley based on the occasional ache and pain that comes and goes is my lower abdomen/lower rear ribs.

I have a similar feeling regarding my bone mets or tumors. I know the next scans are very likely to show either growth in existing areas or new areas altogether. As much as my PSA has gone up over tyhe past six months and the inability to start a new treatment protocal, I believe these concerns are almost guaranteed.

So what lies ahead? What are we doing about it? First in order to remain sane and functional, we have to remain both calm and hopeful.

On Friday, July 1st, Mary spoke to the clinical trial nurse in Boston. Here is what we know right now. At the end of July we tentatively should get the green light to go to Boston four weeks later. At that time I will have several additional tests to confirm I am eligible for the trial. If I am, I would begin taking the medication (oral) at that time. I would then have to return to Boston every three weeks for four more visits. After that the appointment frequency would change to to 6 week intervals.

So four weeks of uncertainty, followed by four weeks of 'terror' and follow that up with a lot of travel time.
Having a new treatment that results in less pain and better PSA scores will make it all worth it!

No time to slow down

After spending the start of last week in Chicago, I looked at our calendar and July is packed with plans. Every weekend through the end of the month finds us busy, busy!

Between parties, dinners, visits with family, celebrating a friend's 40th and an event for our charity, and the highlight....closing the month with Kenny Chesney and an out of town visit from a of friend and fellow PCa survivor.

The first week in August is our 20th wedding anniversary, then two weeks later school will be starting. It might as well be late August!

I'm sure the following thought has been penned in a more eloquent fashion, but right now I find myself living as such.... Don't wait for the moments in life to happen, make them happen!

Would someone stop the carousel and remind me I'm in the midst of a little crisis! On second thought, don't bother, the ride is a blast!

Beautiful Day!

I really don't fear my emotions, I embrace them for the most part. However, there are times when they conflict and times when they surface at the wrong place and time.

Right after this picture was taken, right in the midst of the U2 concert, I was briefly struck with a tremendous amount of emotion. I fought it back but it was difficult. I was both happy and anxious.

My joy was the obvious culmination of nearly eighteen months of waiting for the moment to actually happen. The concert was cancelled last summer so we had to wait. In those eighteen months, a lot has happened with me and my battle, and there we were, finally.

At the same time I knew at that moment he and I were making memories. For him there are aspects of that night and the previous day that will last him many, many years, perhaps a lifetime.

For me those two days will also last a life time, but in all likelihood, a more abbreviated one. For you, the reader, this thought might be hard to understand. You might even be questioning, Was he really thinking that, in the middle of the concert?

My eminent demise is a thought that is always there lurking slightly below the surface. I'm a rather seasoned expert of keeping the thought and accompanying emotion at bay, but there it was, and there it remains. It's the elephant in the room around here. I talk about it only occasionally, but think about it often.

So why in the world would I quote the U2 song in the title of this blog and then go on to write a rather striking if not depressing entry? First, because I try to share nearly everything. Secondly, and much more importantly, to show you and those that find this blog next week, next year and so on, that it's ok to have these thoughts and experiences as long as you can keep them in perspective before returning to hope.

'Hope', that which gets us through this and every 'Beautiful Day'.

It was a beautiful day
Don't let it get away
Beautiful day 

Peace be with you all.

You too!

I don't like the term 'bucket list'. It infers that ultimately there is an end. I prefer to focus on what to do in the present.I'm not saying I don't have a list, as a matter of fact I posted a list here years back that I should probably review.

With this in mind, I spent my the last two days in Chicago with a dear friend. We were there to see the band U2 in concert at Soldier Field. This was my first time seeing this band in concert and they didn't disappoint, it was great! The stage cannot be explained, it is enormous! For those of you who are not fans I'll just say this, U2 is one of the few bands that after having been together for over 30 years you can sense that they enjoy what they are doing and more importantly, enjoy being with each other and being a band. Short of providing the set list, I'll just say it was a splendid mix of new and old.

One of the best parts of the trip was the fact that we never went to the miracle mile/Michigan Ave. I say that because of the dozens of times I have been to downtown Chicago, I have always stayed in and around Michigan Ave. This time we stayed one night at a friend's place up near Wrigleyville and last night at another friend's place in Old Town. I appreciated both their hospitality and the exposure I had to a new part of Chicago, truly a new experience for me.

We rode the El, took a few cabs and walked, a LOT! I would guess we walked 10+ miles yesterday alone and for me, I loved every step of the adventure! We ate great food, enjoyed cold beverages, met new friends, laughed, talked and generally soaked up the beauty of the windy city.

I'm trying to figure out how to get to St. Louis to see the band perform once again on July 17th!!

What does it all mean?

In regards to the video link I referenced two posts ago, Dr. Myers recommended a book titled, 'Man's Search for Meaning' by Viktor Frankl. The book is divided into two sections. The first is Frankl's recollection of his time spent in concentration camps during WW II. The second part is his reflection on life and man's search for finding the meaning of it all. It is wonderful.

There are a number of quotes that I love from the book. The first one I would like to share is this: He who has a 'why' to live for can bear almost any 'how'. - Nietzsche

So then I receive an email from my friend in Australia. In my last response to him I let him know that he is becoming my go to resource when I am having 'blogger's block'.

Here is the home run from his most recent email:

There seems to be something of a pattern for me to the cycle of cancer: Shock, Adjustment and then Acceptance (and the ability to live with an acceptance of finality). It can be liberating too (don't ask me to explain that!)  I've now been on that roundabout a few times and I know that you and others have been through the cycle many more times.  When I first started reading your blogs, I had some difficulty in understanding your coping mechanisms. I think I now understand.

I occasionally have dark thoughts but now I understand the cycle, I sort of know that my emotions will stabilize and I will be able to deal with that new reality but as you'll fully appreciate, while that's an intellectual understanding, the emotional dimension is not so easy until I have progressed to acceptance.  It's different each time. 

I am so thankful for people like him. It may be fate, or it may just be fortunate timing. Whatever it is, I truly couldn't say this any better!