Any day above ground is a good one

I am Daniel Rahenkamp and I was diagnosed with prostate cancer on 10/31/05. Halloween. Welcome to my blog about my travels down the trail of treatment for my prostate cancer. The story starts in August, 2005 and works it’s way back to present time . Use the calendar on the left sidebar to navigate through the blog. Dates that have entries will be in bold. If this is your first time here you might want to start at the end of the blog and read it backwards. My wife Paula is also adding postings about her feelings on how my cancer is effecting her. I hope it helps you or someone you know. If you have comments please leave them because they do help us.

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One of the things I haven’t talked about too much here is how much my wife, Paula, has helped me with my ordeal with this cancer. I was surely in denial at first. I could hardly read anything without starting to breakdown or freak out. She researched practically nonstop in the beginning and told me about things about prostate cancer in small chunks until I could not handle it any more. She was on many many Prostate Cancer mailing lists. She printed out articles about different treatment options. She found Dr. Dattoli. She encouraged me to get on antidepressants, which have helped and I am much calmer now and don’t flip out when reading a simple article on Prostate Cancer. I reached a turning point on November 3rd when I emailed my staff and friends that I had cancer. I guess that is when my anger over how Dr. Jeffrey B. Starling treated my wife, when she was truly the one helping me with her research, came into focus. My anger has helped me focus on fighting this thing and fight it I will, along with my wonderful wife and my best friend Paula.

Called Dr. Dattoli’s office and talked to Sherri the RN there. Asked her about my meds and the side effects of them. I have been feeling very fatigued, like I am in a fog, and somewhat depressed. I am on antidepressants that I got from Dr. Arthur and she seems to think that a long with the lowering of my testosterone my antidepressants may need to be adjusted. I will talk to Dr. Arthur.

I waited nervously for Dan to bring home the results of the latest MRI. The worst part of all of this is waiting for the latest development. But then you remind yourself that you will deal with whatever presents itself. Dan and I had a discussion the other day. It’s like it’s no longer just us in this relationship. It Dan and me and the Cancer.

Cancer/Kancer Dirty Rotten Lousy Lowdown Cancer Unwanted Visitor
- go screw yourself cancer- BEAT IT

I wanna pretend it’s all a bad dream. On some level maybe it is. Buddhism holds that this whole life thing we are in is just a drama, and old Shakepeare himself told us that "each is an actor playing his part".

Well, if I align myself with any "religion" it is Buddism. But then I hate systems and constructs. It just really comes down to Dan and me, and we are soo sad and he is trying so hard to be with all of this. And it hurts to watch.
Religion. Philosophy. Yeah. Yeah. Yeah. It’s still hurts.
Cancer really pisses me off. I have lost five relatives and two good friends from this dread disease. Dan’s mother also died from cancer. I am no longer scared of it. I just hate it. I also do not trust it. One microscopic cell could be floating in the system and bam- metastasis. A prognosis is only that. Gotta work hard at living in the moment. No guarantee with the Big C. No guarantee with much really except our own attitudes.

The whole darned deal is this: There is no guarantee of anything in life. We each have one locus of control, and that is how we choose to deal with stuff. Personally, I have to jump into anything that comes up and grovel in it. I want to seek out all the dark corners and the bright ones too.

Marie Curie said, "Nothing in life is to be feared. It is only to be understood." In case you don’t know she and her husband were scientists. Think they discovered radium. Well, anyway even though all of this cancer study has often been scarier than a Stephen King novel, it proves Mrs. Curie’s point as true. I learned and was so surprised to know that even people who are diagnosed with distant metasteses can still be alive 10 years later. Look at Lance Armstrong. He had cancer in his liver and in his brain six years ago or so. The point is that the patient must know his disease and understand the parameters of the pathology of his cancer. He must know the stage. He must know the level of aggressiveness (the grade). All cancers are not created equal. That’s why a person absolutely must take possession of his pathology report and study every single aspect of it. It is the pathology of the cancer that determines prognosis. Just knowing the type of cancer and its stage is much less important than the actual cellular structure of the cancer.

So it looks as though Dan will be needing to have blood taken monthly and be ever vigilant because the doctors will not be. They are just too darned busy and overloaded especially the ones that are part of managed care organizations. That is why we are choosing to go out of network. It will cost us more, but there will be much more individualized care given to Dan’s case. Even so, he will need to be watching this thing like a hawk for the rest of his life, and God know I hope his life is a long one.

The MRI seems to indicate that the cancer may be outside of the prostate. Hopefully, not far. If it is, then the cancer is not in the "caught early" stage. Still very treatable, but much more high risk business here. I freaked for just a bit on this news. We’ve got the best we could find with Dattoli. One thing I learned in the hundreds of hours of research, is that it is the skill of the DOCTOR one must choose. One should NOT choose the facility. I also read that people spend more time shopping for a car than they do a doctor. One must research the doc, interview him/her and ask for patient references. Yes, shop for the doctor. Yeah, most of them do not like it, but hey baby that’s life in the fast lane. The internet has changed it all. And I also have read studies that confirm that the people who get the best medical care are the ones with the big bucks and/or the ones who conduct major research. Trust me, babe, the best docs are all over the internet if you search on sites that are NOT doctor sponsored. The best site I found for Pca is Don Cooley’s. He is a cool dude computer geek who got prostate cancer and created his own site. Real conclusive. Just takes donations. He lives in Silicon Valley.

Dan will have to have his prostate and area beyond radiated before the seed implants. Dattoli’s color doppler ultrasound is highly sensitive at picking up stuff that an MRI cannot . Few facilities have CDUS not even Moffitt Cancer Center. Go figure. Pays to research. Do not choose the facility. Choose THE DOCTOR.

I don’t trust anything until I have facts and piles of them. My Mom taught me this. She was smart and feisty. I’ve had lots of doctors totally turn off to me. Ask me if I care.

Went to Moffit to get my stuff and no kidding I was there all of 15 minutes, went to two different places in the hospital. I had to go the first for the report and a second for the copy of the MRI. Mind you I had to fill out and sign a HIPPA release for each, but look at what they gave me. MY OWN CD!! I get a CD with my name on it and everything. I’m in heaven. It even says on the CD sleeve “PATIENT COPY PLEASE DO NOT RETURN”. Now that gets the easy button.

My MRI Report

My very own CD with my name on it and everything!

And I get to keep it too!!! Did I tell you what they charged me for it? Nuning, Nada, Zip. All that and done in 15 minutes start to finish and with every person I delt with they acted friendly and professional. Another easy button. Ah hell I give them another!

Oh you ask about the report? It has just confirmed what we already know.

Called Moffit today for copies of my endo-rectial MRI and a copy of the report so Dr. Dattoli can have a look at it. BOY what a difference.

"Sure no problem. Just stop at the desk and ask where records are. We will put your films on CD so your doctor can see them too."

Boy what a difference from Dr. Jeffrey B. Starling’s office. No hassles, no approving of what I can have, and no bad photocopies of my films. And they didn’t even fire me! That’s how it should be, right???

Talked to my sister Cathy last night to see how David made out with his biopsy. He is doing well as anyone can after having 12 needles shot in quick succession into your prostate. He got a 12-needle biopsy as I advised him to do and what was different about his biopsy compared to mine is that they made him stay in the office until he urinated and that took a couple of hours. Now Dr. Jeffrey B. Starling didn’t have me do that. I got 12 shots and bang I was up and walking out of the office in 5 minutes or so. Wonder why?

I just got this from my sister. It made me feel good that someone else was helped because of my email. The Internet is truly a wonderful thing despite what Dr. Jeffrey B. Starling thinks.

I talked to my friend Judi from Ala and last night and I had shared
your email with her soon after i got it. She told me last night that
because of what you found with the PSA being as low as it was and the
frequent urination, her brother is going for his test. Thought you’d
like to know. It’s been so hectic here that I haven’t been able to
dwell on today, which is good. I hope we hear the results soon. I
love you, C

Just sent this to my staff and friends re: this blog.

Many of my friends and co-workers have asked how I am doing since I found out I have prostate cancer. I am doing pretty well. I have made contact with a wonderful doctor in Sarasota who will be treating me and the outlook looks bright. I have also started a blog of this whole experience not only to share with you all but mainly to keep things straight in my head and as a means of catharsis for my anger and grief about having this disease. It is located at http://roontoon.com/blog/ If you have someone in your family with prostate cancer I urge you to read it and to check out the prostate cancer links. Also if you or the men in your life have not had your/their PSA tested and had a DRE, I urge you to do so as soon as you can. Today my brother-in-law is getting a biopsy of his prostate, because his PSA was elevated, and this was a direct result of my first email to you all. PLEASE get checked.

Dan