Advanced Prostate Cancer

From the far corners

Advanced Prostate Cancer, Boston, Cabozantinib, David Emerson, XL 184 -

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!

A Capital affair

Advanced Prostate Cancer, Boston, David Emerson, Washinton DC, ZERO -

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.

Focus, from another continent

Advanced Prostate Cancer, David Emerson, FLHW, XL 184 -

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. 

The starting gun

Advanced Prostate Cancer, Boston, Cabozantinib, David Emerson, XL 184 -
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 2nd. 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 11th.

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!

Come On Irene!!

Advanced Prostate Cancer, Boston, Cabozantinib, David Emerson, XL 184 -

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

Advanced Prostate Cancer, David Emerson, PSA -

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

Advanced Prostate Cancer, David Emerson, Led Zeppelin, Ten Years After, The Outlaws -
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….

In Like Flynn

Advanced Prostate Cancer, Cabozantinib, David Emerson, XL 184 -
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 30th. 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 30th may be a challenge psychologically, but we’ll get through it, and hope for a good response to the new treatment!