radiation

My Neverland

Boston, chemotherapy, David Emerson, Neverland, radiation, XL 184 -

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.

It’s a good news, bad news thing…..

Advanced Prostate Cancer, David Emerson, hrpca, Provenge, PSA, radiation -
I’ve written here are a few times about a recently approved and very exciting new treatment for advanced prostate cancer, a drug known as Provenge. Well it seems the demand is far exceeding the company’s capacity to keep up. This is something I saw first hand back in March and something that the company has been very clear about since the FDA approval in late April.

From Bloomberg: Rationing of Provenge

It’s just kind of sad to see in writing and know that even after Dendreon expands their existing facility and opens two others by the middle of next year, it will take some time to clear the back log of patients.

By the way, the title had nothing to do with my personal situation. Yesterday I received my 14th and final radiation treatment. For the most part the whole process was easy. I had some increased pain the first week and was rather fatigued as well. I have however been completely off pain meds for a week now and the fatigue is in the past as well.

We met briefly with the radiation oncologist and I can begin to exercise again but to avoid any exercise involving my legs for the next few weeks. Walking will be fine, but I have to avoid sit-ups so there goes the six pack abs I was working on! Disc golf of course is still a non-issue for at least two months, that is a hard pill to swallow, but I am very thankful that the pain is gone.

It is for her….

Advanced Prostate Cancer, David Emerson, PCa, radiation -

It is for her…

It is but your beauty
that which awakens me
and guides me
throughout my day, my life.

It is but your smile
the look in your eye
as you look upon me
the look that inspires me
and retains my desire to go on.

It is but your love
for him, for me, for us
the love that shines
for all who encounter you
The love that I cherish with all my heart.

Ooops, where does the time go?

Advanced Prostate Cancer, David Emerson, Oxicoden, PCa, radiation -

Sitting here watching the US Open, it suddenly dawned on me that it had been awhile since I posted. Not only had it been nine days, but so much has happened. Once I explain it all, my negligence will be understandable.

After my first three radiation treatments, basically over last weekend, I found myself once again in some considerable pain. The odd thing is that the pain on my right side, which initiated the radiation treatments was completely gone and now it was my left hip and femur that were causing discomfort. It was not nearly as bad as what I had been experiencing with the right side, but it was pretty darn close. Sleep was tough because I could only get slightly comfortable on my back. Using the Oxycodone every 4 to 5 hours, I was able to get through the weekend. On Monday I went in for my 4th radiation treatment and met with the Radiology Oncologist. I left with a prescription for 12 hour, time released Oxycontin. What a God send! I’ve been sleeping great since and was even able to return sleeping on my side that first night. Two days later I completely stopped taking the other pain medication during the day, so I now only need it at night to get some sleep without interruptions from pain.

Today I spent most of the day in the yard. My contribution was minimal, but I was able to pull a few weeds, stake and tie up the tomatoes and provided a slight bit of help to my brother in law as he worked feverishly through the heat of the day to replace some wood trim on the house.

On a related note I discovered something today; there are times when you just have to step back, face the facts and let people help you. I have always been the type to help friends, family, etc. Whether it be with a project in the yard, repairing a computer or whatever, I really take pride in lending people a hand. I however find it difficult to ask for help. Rich taught me something today, other people like to lend a hand as well! As I sat in the shade and watched him work like a horse, I knew how he was feeling. I truly appreciate his time, hard work and support.

Tomorrow is Father’s Day, and I think I’ll take some time to enjoy it! Brad is back from camp, Monday I have my monthly check up with the oncologist (hoping for another decline in the PSA!), a Lupron shot, and a Zometa infusion. After we have the visit at KU Cancer Center, Mary will take me over for my 9th of 13 radiation treatments.

Here are a few lyrics of a song I was listening to while writing this post ~

Life is a carnival
It’s in the book
Life is a carnival
Take another look

Turn the page

Advanced Prostate Cancer, David Emerson, hrpca, MRI, PSA, radiation -

During last month’s Greenhouse fundraiser I met a great couple, the Clarks. She invited me to attend a support group they are members of and asked me to share my journey. I gladly accepted though I did so with some trepidation. Most times I can tell the story and speak of the treatments and issues we’ve experienced with ease. Other times it becomes too emotional.

Tonight was their monthly meeting and Mary and I fought our way through a massive thunderstorm to arrive about 10 minutes late. The meeting began with the members of the group sharing their names and their stories. I was by far the man with the most advanced diagnosis and based on some of their expressions and reactions, I think they were somewhat stunned by our journey.

On a daily basis I guess in some ways I forget everything we’ve been through. When I lay it out like I did this evening, and tell ‘our story’ it is sort of overwhelming. I am glad to report I completed the tale without getting emotional. There were a few points when I had to pause and take a deep breath.

I share all this as a prelude to the latest chapter in the journey. What I am about to share is certainly a new part of the journey.

First the blood test and MRI: my PSA was down almost 18% from the previous week! And the MRI expressed some stable area but others there showed noticeable increase in activity. The Radiologist was careful with his assessment, they always are, but this time he was comparing the MRI to a CAT scan from last October, eight months ago. The one area that was rather clear is my right thigh has a tumor that has nearly tripled in size. I wish there was more to report but that will come tomorrow when we meet with the Radiology Oncologist. It is all but guaranteed that My next step in dealing with the pain will be radiation treatments. The question remains how many? Will we go after the hips and the leg? How successful can we be without compromising my bone marrow in case I need future chemotherapy?

Only time will tell, fortunately, time in this case, is less than 12 hours.

What tomorow has in store for me

Advanced Prostate Cancer, David Emerson, DES, radiation, Wafarin -

Time changes many things, including treatments for my Stage IV Prostate Cancer.
Five years later, we face a new course, a new direction.

With my PSA climbing considerably over the last 6 weeks and limited treatment options to chose from, we have decided that I will start DES, a form of women’s estrogen. My friend Howard has a good write up here at hrpca.org (http://hrpca.org/estrogens.htm)

There are two potential side effects, DVT aka Deep Vein Thrombosis (blood clots) and/or Gynecomastia (breast enlargement). The former can be managed with Coumadin (Wafarin). The latter requires a one time treatment of radiation to my breasts.

So tomorrow begins the next step. I pray for good results. I pray for the longevity of this treatment. I need a mental break, I need a beach.