metastatic

…. for a reason.

Ever since I’ve known Mary (25+ years) she always has used the expression, “Everything happens for a reason”.

While we were at the beach we spent a lot of time looking for sea shells. One afternoon Brad walked up to the north end of Anna Maria Island and while looking for shells he lost his blue silicon FLHW bracelet.

Then, on Tuesday while we were at Busch Gardens I received the following email:

As I was strolling along the beach at sunrise this morning on the north end of Anna Maria Island in Florida…I noticed a blue bracelet at the edge of the sea…just sitting there mixed in with all the beautiful shell shades….so I picked it up and read Faith Love Hope Win www.flhw.org.

Upon returning home I went to your website and I am still dazed and amazed at what I found. My husband passed to heaven 20 years ago…he was 42…our daughters were 5 and 8 at the time….he had prostate cancer. Not quite sure yet what his message is to me here… just thought I would share this with you. In light, LM

I hope your reaction was like mine. WOW! A coincidence? Perhaps it was, but I believe it was something more. For her? For me? I’m not sure and I may never figure it out. Anyone could have found the bracelet, but it ends up in her hands and with her story it had to happen for a reason.


I met her on the beach one morning and we walked (a long way!) and talked, and talked and talked. She told me about her husband and daughters and I told her about Mary and Brad. It was probably the fastest 90 minutes I have experienced in a long time. The discussion was fascinating, enlightening and touching.

Reflecting a few days later I am left with the thought of how much she still misses him twenty years later. I was also left with the thought that perhaps I had just met Mary, twenty years from now?

The Big Speech

Today I had the honor and privilege of visiting with over three hundred members of the Johnson and  Johnson pharmaceutical team. For about 30 minutes I shared my personal story and some highlights of the challenges, concerns and opportunities of the many men fighting the battle against advanced prostate cancer.
I was more nervous than the previous times that I have discussed this topic publicly, either on local television or the radio. A large room full of people can be intimidating. 

Below is an excerpt of my introduction to my message about living with advanced prostate cancer.

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I really appreciate you providing me the time to tell my story and the personal side of what it’s like living with advanced prostate cancer.
Though I will spend this time talking about my journey, at the same time I do so as a representative for all the other men out there fighting this disease. These names (referring to a slide projected on 2 large screens at the front of the room) are just 27 of the hundreds of thousands of men out there fighting this battle every day. Some of the men listed are in remission, others are in a similar situation as me, and still others are struggling more than we know. They all have stories, but just like the disease itself, and humans by nature, every one of their situations is unique.
Art G   Bob E   Brian W   Bruce L   Chuck M   Dan J   Dan Z Dom M   Don T   Eric S   Greg J
Jay D   Joel N   John A   John H John S    Kiwi Brian Ludwick   Mark H   Merle   Mike M
Scott G   Terrance   Terry H   Tom T   Tony C   Walt W
I am not a doctor, an academic, nor an expert, but I do believe I know a little more than the average patient. The primary lesson I have learned during this journey is that prostate cancer is a really, really complex disease and every single patient is different. There are men with low PSA and just a few small tumors that are in such excruciating pain that they can barley function. Then there are men like me with high PSA, extensive mets and are in no pain. It’s crazy at best.
Rik M   Rick S   Aubrey P   Steve B   Wes W
And these 5 are friends of mine that are no longer with us. One of these men fought for over 13 years, another less than two. I share these 5 names only to express that once again I am honored to represent those that have succumb and all the men out there dealing with the advanced stage of this disease.
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I continued by sharing all aspects of my personal journey; the spiritual, the nutrition and physical, the emotional and the medical.  I discussed the blog, our foundation and the fact that people from around the globe have reached out to us, recognizing that prostate cancer has no borders.

I attempted to lighten the subject with a bit of humor.It seemed to be well received.  My hope is that my audience left with a broader perspective of what we, the men with advanced PCa, go through as we battle this horrible disease.

When things get serious, it’s time for some silliness!

After today, and for some unknown reason, I’m feeling a but childish tonight! When you get through reading this update, you will probably think I’ve lost it. After five years, actually 64 months, nothing about this whole ordeal will EVER get me down. I say that with complete confidence, it will not!

First off, while searching for another video I ran across this classic. This is back from the days when cartoons were cartoons. Enjoy, perhaps it’s inclusion here will make more sense if you first read further.

Today, if nothing else, should be described as a whirlwind. At 9:00am we had an appointment with my Radiology Oncologist and by this afternoon I had already completed my first radiation treatment. I guess some details would help?

First, before I forget, the steroids are working, I went 19 hours between doses of pain pills! Better ye,t the steroids did not keep me awake last night, I slept for seven and a half straight hours!

Our meeting with Dr. S was great, as I’ve said here before, we have been lucky to have always found wonderful doctors throughout this whole journey. Dr. S is another example. Initially, he spent 45 minutes going over the details of the MRI. I created a picture on my iPad to illustrate what I am about to share. Please look up at the title of this post if you have any doubts about the quality of the picture!
Here’s what you are looking at and what we discussed. This is my legs and torso, my femurs are black, my bladder is red. I’ll start with the bladder and the green meanies. The green areas are swollen, cancerous lymph nodes and this is not good. They are not only pushing against my bladder but they are pushing against nerves and muscle and hence, the source of most, if not all of the severe pain I have been experiencing as of late.

The gray areas on the bones are also tumors. According the Dr. S the areas further down the femur on the left in the picture (my right side) and the circle on the right side in the picture are of less of a concern. That’s easy for him to say! If you think they look pretty scary in this wonderful illustration, you should see them on an MRI image! Mary and I, as you could guess, were more than a little shocked. The areas at the top of both femurs were almost as concerning, for another reason. Due to the amount of weight, stress and rotation in this area they are very susceptible to fractures and as the right side of the picture shows, I got some problems!

The good news in all of this, and believe me, there is good news, is that there were no fractures. On top of that Dr. S is 100% sure he can kill all of the cancer in each of these three areas. This will also only take thirteen radiation treatments, each only lasting about 8-10 minutes each day, and I already had one today.

A word of caution however, killing 100% of the cancer in these areas only means the cancer in these areas. It is not able to kill the cancer cells in my prostate, the area in my ribs nor all the other micro-metastasis that may be in other areas.

It also probably means my disc golfing days are over, at least for the next 3-4 months, but perhaps for good. I will be walking, keeping score and joining the gang and hope to return to doing atleast that much by mid-July. Yes, Mary, I heard him, I have to be very cautious!

drawing a blank …..

If you are one of the fans of this blog and you happen to have advanced metastatic Prostate Cancer, there is a group that needs your help. Oxford Outcomes is conducting a survey and is struggling a little to find participants. Not only can you help the cause, you can earn $50 just for spending an hour on the phone answering questions.

I completed the survey the other day. It was very easy.

Just call Shadi and she’ll let you know if you qualify and how to participate.
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Shadi Gholizadeh
Research Associate
Oxford Outcomes 7315 Wisconsin Ave., 250W Bethesda, MD USA 20814
T: 240.482.0034/ Fx: 240.482.0043

“Stable”, adjective, from Latin stabilis

Main Entry: stable
Function: adjective
Inflected Form(s): sta·bler l “”
Etymology: Middle English, from Anglo-French estable, stable, from Latin stabilis, from stare to stand Date: 13th century

1 a: firmly established : fixed, steadfast b: not changing or fluctuating : unvarying c: permanent, enduring 2 a: steady in purpose : firm in resolution b: not subject to insecurity or emotional illness : sane, rational 3 a (1): placed so as to resist forces tending to cause motion or change of motion (2): designed so as to develop forces that restore the original condition when disturbed from a condition of equilibrium or steady motion b (1): not readily altering in chemical makeup or physical state (2): not spontaneously radioactive

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Are you scratching your head yet wondering what the heck I am getting at?

Well I picked up my copy of the scans and the Radiologist’s report and within the seven page report lies the bottom line, the conclusion the good news!

CT Scan: Impression
Abdomen:
1) Stable sclerotic foci within L2 vertebral body consistent with blastic metastatic disease from the patient’s known prostate cancer. No new sclerotic metastses are identified.

2) No evidence of hepatic metastatic disease or abdominal lymphadenopathy.

Pelvis:
1) Stable sclerotic lesions within the hips and bones of the pelvis consistent with metastatic disease from the patient’s known prostate cancer. No new osseous lesions are indentified.

Full Body Bone Scan
Stable bone scan with uptake in multiple pelvic osseous metastases. There is no scintigraphic evidence of new osseous metastatic disease since February 23, 2009

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All this means is that the overall disease appears to be stable. On Monday we will find out what the blood and other markers (PSA, CTC, BAP etc) are indicating and we’ll go from there.

Not sure what the options are, but we’ll be sure to let you know once we discuss with Dr. V, and perhaps Dr. L in Houston