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!