Welcome
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.
PLEASE add yourself to our Frappr map as we would LOVE to know where our readers are from.
How true it sounds to read your blog!
Keep on fighting and don’t worry about bad or good humor,
only humor can make Death to shake.
I really enjoy your blog title, any day is a good day to live.
Best and respectful regards from another C-Fighter from France.
Andre
Comment by Andre LAMERANT — December 13, 2005 @ 6:28 am
Thank you very much Andre and best of luck with your fight.
d
Comment by Dan — December 15, 2005 @ 6:54 pm
Dan, this is wonderful. I wish that my Mary could have had something like this to help her focus on what really is and to be able to express it and see what others thought.
If you can look at it, right in the eye without flinching, and then go on you have done what you need to do. The rest is fate.
I learned that in my struggle with what was happening to the life that was left to me after I died.
Because I have privy knowledge, I know what the scans say.
If you are to walk away from this, you will. If not, at your time, you will be happier than you’ve ever been and the rest of us will have to cope with your escape from the wheel. I know this and I wish there were some way to impart it to you, but your path is yours.
I have no faith, never have, but the lure of the lights is always there awaiting me. I would rather be there than here.
Since we are both shy, we have only had a superficial interaction, but I know things that few others know and I would like to share (one of the very, very few times I’ve used that word according to it’s real meaning) them with you.
Here — I’ll look in my daily scan of the universe — or email. If you wish.
Revalation, as you and Paula have described, is the best weapon you have against fear (terror sometimes maybe, for Paula I’m sure)
“I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.”
- Frank Herbert
Dan, there is nothing to fear.
See you New Years.
Comment by Jamie — December 29, 2005 @ 9:25 pm
Hi Daniel, I am, in some way, locked up in a fight with bladder cancer while different doctors seem to have different oppinions on my situation. However I feel like I am still strong enough to do whatever it takes to come out of this unscathed - believeing in miracles too helps a bit with my situation.
I just want to wish you a better, happier and healthier year.
Never give up
z
Comment by z — January 3, 2006 @ 1:13 pm
Good for you to be writing this about your feelings over your illness!!!!
Comment by Marc — January 7, 2006 @ 2:33 am
Hi Paula & Dan, I am glad to see that you have started your treatments sometimes the waiting is the worst part of this. I had my January treatments last week as well, Tuesday through Friday. On Tuesday ater the vitals and blood work I waiting for my injections to arrive from the Pharmacy and I sat in the big stuffed chairs in the Clinical Research Unit next to a young man of about 40. After I got my shots I had to be observed for an hour so I started talking to him. It is encounters such as this that puts things in perspective for me. This is a bit of his story. He was started having pain in his left side. He went to a clinic because he had no insurance and the diagnosed it as cancer and they gave him 6 months to live. He applied for SS disability and was turned down until it got worse which it did. When he got apporoved for Medicade he started at Moffitt. and he started on a Clinical Trial with some experimental treatment. The first trail had no effect and the cancer worsend quickly. He was changed to a second trial and had a heart attack while in the CRU at Moffitt, and then a second herat attack shortly after. He in now on his third CT and is responding positively. The tumor is shrinking and he is happy to be at Moffitt and in month 13 post diagnosis and not “under the ground”. He left before my hour of observation was up and I sat there and reflected on his and my situation and thought how lucky I am……….
Comment by Ron G — January 9, 2006 @ 8:45 pm
So true Ron so true. After all the title of the blog is “Any Day Above Ground Is A Good One”. We are both lucky in that respect.
d
Comment by Dan — January 10, 2006 @ 11:37 am
Wow. I discovered this blog today on the SPtimes website. You are very brave to write it and, well written it is. May the force be with you! And good luck with all.
Comment by B — January 19, 2006 @ 8:27 pm
Hey Dan, Thanks for all you do. My husband is going for his yearly check up in March, and because of what you told me he will be doing the two tests your recommended way back in September in one of your emails.
Thanks for helping others with your trials and tribulations. We appreciate it.
Comment by Kiefer — January 26, 2006 @ 1:56 pm
I am sitting here on my sofa, I should be in bed. My caregiver has the flu, finally cuaght up
with her. She is my Paula…..I’d be no where with out her.
I turn 43 in 51 minutes…..
I have stage 3, advanced, metasticized PC and it really sucks.
40 f’ing three…….
I have on my iPod, 40 Licks, perhaps one of the best “greatest hits” collections ever.
One woudl have never thought the Stones had som many good songs until someone put them
all together in a two CD collection.
I regress….
I just guess I ask that some day, when you have A LOT of time, read my ordeal.
It’s a year in the making and if I have anything to sya about it, there are many, many
more years and posts to come.
http://prostatecancerat42.blogspot.com
Comment by DavidE — January 27, 2006 @ 12:18 am
My mother was just diagnosed with stage 3 breast cancer, and we’re about to start with the chemo experience; I hope she’ll be able to have as good of an attitude as you do.
(here’s me)
Comment by Omni — January 27, 2006 @ 5:16 am
Welcome to both DavidE and Omni, DavidE I will check out your blog this weekend. Thanks for stopping by.
d
Comment by Dan — January 27, 2006 @ 9:34 am
I had my bout with cancer in 1982. Lymphoma in the neck. (Never could spell it; lymphoma, I mean)
Thanks to surgeon Richard Farrior at Tampa General, I have been without cancer for 23 years now. Althous I have a 15-inch scar on my neck and some missing muscles in my left arm, I am one of the lucky ones. I have been granted hundreds of “one more days.”
Bless you. My prayers are with you.
Lary
Comment by Lary Crews — January 28, 2006 @ 10:53 pm
Your story sounds like such a mirror of mine. You are not alone and there are many days ahead for you.
Comment by Prostate Cancer Guy — January 30, 2006 @ 11:28 am
After finding this site I read it through, I was diagnosed last Monday 2/20/06. It’s already been nothing but waiting just to find out if I have cancer and now I know the answer. At this point I’m not afraid I’ll die but the treatments are all really scary. My wife and I have been married for 24 years also, 25 this May and her parents live in Land of Lakes, FL, I live in Lafayette, CO near Boulder. I have already chewed out my doctor once. He called me at 7:30 at night on my cell phone to tell me, good thing I left it in my truck. I was at a going away party, parting! Well the doc leaves me a message he will get back to me next week cause he’s leaving town, well I knew it was not good, a weekend of hell! The call was on Thursday 2/16/06. Now I have to wait until March 6, 2006 to find out the whole story, more waiting, I am already feeling that pain. I going to a support group tomorrow night to get more of this kind of how it’s been for me stuff. One thing I was wondering was what treatment options did you truly consider and how did you decide the “seeds” were best for you? Also where do you find out about doctors for treatment?
So hang in there and thanks for putting up this blog!
Comment by Mike — February 26, 2006 @ 2:02 pm
Mike,
Thanks for dropping by the blog. The first thing you need to do is read EVERYTHING you can about PCa. You also need to know your Gleason Score, your PSA, and your staging. There are several mailing list that I would also suggest that you get on. There are several on our blog on the right hand side at the top. Don Cooley runs several and there is also seedpods. Don Cooley also runs a weekly chat that you can join and ask questions live of other folks that have had or treat cancer. I decided on seeds first because I felt that the side effects associated with this treatment were less than with surgery. I am almost 53 and that is too young in my opinion to even risk impotency or have urinary incontinence. That said the next step it to find the finest doctor you can to do the procedure. I was lucky because I have Dr. Dattoli just 60 miles from Tampa and he is considered one of the tops in the field. I did however talk to two urologists and another Rad Onc doc before I decided on Dattoli. Two of these doctors were at Moffit Cancer Center but I ruled them out because I didn’t want to have surgery and two with the Rad Onc doc they didn’t have the newest equipment to do my treatment. ( Color Doppler Ultrasound ) Also they used radio active Iodine, which has a longer half life and with it more side effects. You have to be comfortable with the risk and the treatments you will be getting. More importantly you have to have trust in your doc. Remember you are picking a Doctor not an institution so make sure you are happy with that. Remember you are at the beginning of your treatment and PCa is a slow growing cancer you have time to make informed decisions.
d
Comment by Dan — February 26, 2006 @ 2:45 pm
Dan,
Would’ve gotten back sooner but well, things here have kept me pretty busy.
Let me give you some background (forgive me if I go on but, well, you know how it is when you have the opportunity to "talk" to someone who is going through the same situation).
Don & I live across the bay from you & Paula…we’ve been married for 40 years the end of April. After Don left Enron, we decided to go with what we knew and went to work on natural gas pipeline construction projects that take us across the country. Don is a Chief Inspector, I’m a Resident Engineer and we complete a multitude of projects during a season. Our work last year was in New England, the major portion around Portland, Maine. We’d intended to stop being away from home so much but having no health insurance will determine many things and the fact our employer started an insurance plan last year became a deciding factor to continue this work.
In late October Don went for a physical while we were in Portland just because we were now covered by insurance and he was overdue. At that time his physician did a DRE and found the tumor. The blood work showed his PSA level to be 7.76 (in 2001 it was .7) and an appointment was made with an oncology urologist (Dr. Adey) at Portland Urologic Associates. This extremely warm, kind young doctor greeted us, examined Don and an appointment was set for a biopsy. The doctor called 2 days later to come in the following day as the results were positive and we needed to talk.
It’s now November 18th, we needed to go back to the main office in Washington PA, wrap up any paperwork and get home…fear is definitely setting in and we’re so far from family. Prostate cancer…we had no clue, none. Dr. Adey spent an hour with us and couldn’t have been any more compassionate and reassuring. With a Gleason score of 4+3=7 and a new PSA of 7.96 all available options were discussed - what would be possible, what wouldn’t and the why’s of both. He understood our desire to get home (although staying and having surgery there was an option, he thought we should be with our family & friends for support) He was happy to learn we live close to Moffitt and proceeded to get all of our records, write a letter of introduction to Moffitt and call our GP here to explain our situation. We will forever be thankful for him.
It’s now Nov. 21, we’ve packed our trailer, traveled to PA to finish our work and get home. We even worked through Thanksgiving Day and set out for home the day after.
Looking back, I believe we were still in a state of shock.
At this time we’ve told no one…no one. Christmas is fast approaching. Our youngest daughter is planning her wedding for April 2006. We decide to wait until right after the holidays when all decisions are made and we know for sure what path we’re taking. During this time the Internet has become my mainstay of information. Some good, some not worth looking at, some brilliant, some heartbreaking & beautiful. (RVY - Phoenix5). I’m the gatherer of info and Don is listening to what my discoveries are. I feel a certain strength and calmness from this activity.
It’s now Dec. 14…we meet with Dr. Pow-sang and his team. Don’s records are there, his slides have been re-evaluated (same outcome) and we talk. Don decides surgery is his best option, as does Dr. Pow-sang and the date is set for Feb. 9. I’m in full agreement. So, now we tell our children. Emotional…I’ll never forget it. We talk after the tears subside and give them all we know. They are buoyed by his positive outlook and we promise to be open and tell them everything. And so we do.
I won’t describe in detail the surgery, but Dr. Pow-sang’s visit to Don’s bedside before he went in was greatly reassuring. Fast forward to here we are, 2+ weeks post surgery, the cath is still in, until the bladder & urethra reconstruct is fully healed. Should be out by next Wed. After final pathology the cancer is staged at T3a, although the cancer did not break through the capsule but up to the outer wall.
It’s not been easy watching the man I love go through this. There have been periods of fear but then the knowledge we’ve gained asserts itself and we take a deep breath and move on. Sometimes Don is the Rock, sometimes it’s me. I’ve had times of what I call "Spontaneous Crying"…it’s happened in the greeting cards at Publix, at my doctor’s office and well, just about whenever or where ever it wants. It’s not a decision on my part…it just happens. That’s okay, this is a life changing event.
Well, here we are. One thing is for sure…fear is not going to be the boss. We fight the same disease, in different ways yes, but hoping for the same outcome. Hope is everything, isn’t it? It’s anticipation, desire and the expectation for the best to come.
So, we are going forward with our lives as if we are the luckiest people on earth and it is so.
Here’s to your Hope!
Susan
Comment by Sue Cummings — February 26, 2006 @ 3:58 pm
Sue
Thanks for the comments. I posted them for you. You have a very good hospital with Moffit and I can say that my meeting with Dr. Pow-Sang was also a good one. If I had chosen surgery I would have gone with him. I chose not to and go with seeds. I can tell you this that it would be better for you and your husband to talk about his PCa with everyone. This is part of the problem with this cancer, no one talks about it. Good luck to you and Don.
d
Comment by Dan — February 26, 2006 @ 4:05 pm
So sorry to hear about your struggles…Keep your head high.
You should honor your survivorship with an online luminaria on our site, www.cancer.org/lighthope, that lets users honor friends and family who are touched by cancer. But you can also honor yourself, and you deserve it!
Your friends at the American Cancer Society
Comment by American Cancer Society — June 20, 2006 @ 3:40 pm
I just discovered your blog 2 days ago, I live north of Paris-France, (that’s the track you see as “Compiegne-Picardie”).
I haven’t read everything yet, but I will, and I must say it’s a relief for us to share our state of minds, because my husband (61) and I have been battling this disease since last January. It started with a bad pain in one knee, but no other real symptom, hardly any urinary problem, we just thought it was age, then the doctor had the idea to have his PSA checked and it was 156!
Biopsy confirmed a stage 9 on the Gleason scale! and in march a bone scan revealed metastases, which started to give him terrible back pains ! He is of course on hormone therapy, the only treatment available at this stage ! Not knowing much about how long that can work before chemio ! It’s so nice to share others’ experiences and stories, because I feel lonely in front of so many questions ! We don’t get much help in counseling from our french docs : the diagnosis was announced on my husband’s cellphone, and he has seen the urologist only twice in 8 months ! and 5 mn each time !! They seem too busy with so many patients ! I am trying to find all the info on the net, like so many!…
I run a website in french about a US singer I have loved for many years who came in Paris in 2003 : Michael McDonald, whose voice is just getting better and better with age ! Nice man too, always dedicating himself to many charity causes, like hunger and cancer, (his wife had breast cancer 8 years ago), I have seen 9 concerts with him in the last 3 years, in the US where we are twice a year (Florida mainly); I have met him backstage 3 times.
Talking about our worries should be part of the therapy, and thank you for your blog, which I will try to follow!…
Fran (aka Francoise here).
Comment by Francoise Cifre — October 15, 2006 @ 1:17 pm
Francoise,
Thank you very much for your very kind post. You and your husband have a much tougher fight than I and I wish you my best. In terms of support you might want to think about joining a support mailing list. This helped my wife Paula very much.
Go here for more info: http://www.psa-rising.com/caplinks/support.htm
Paula got a lot of benefit out of this mailing list: Ladies Only Prostate Cancer Support Group which can also be located at the link above.
Again thanks and remember there are a lot of people out there like us so you are never alone in your fight.
d
Comment by Dan — October 15, 2006 @ 1:49 pm
Dear Daniel and Paula,
Lots of hugs for both of you!
I added your blog to our personal blog about a very fast non curable liver cancer at: http://www.metastaticlivercancer.org
Since it is a great help for our viewers to hear more than 1 story, please add a link back to my site; Metastatic liver cancer?
Thanks and all the best,
SK
How the pain is getting too much at:
http://www.metastaticlivercancer.org
Comment by See Kim — November 30, 2006 @ 10:25 pm
Happy 2007 for you Daniel, Paula and your family and friends!!!
SK
Comment by Metastatic Liver Cancer — December 29, 2006 @ 10:12 pm
Friends,
A new Web site dedicated to Cancer, ALS and Hospice Care launched yesterday: 3Reasons.org
The site is for A Ride for Three Reasons. 65-year-old cancer survivor Bob Lee of Barrington, IL will ride his bike 6,500 miles across America to support Cancer, ALS and Hospice Care.
Have a look at the site and feel free to contribute. We’ve raised over $200,000 so far and we’re going for $500,000.
-Chris
Visit A Ride for Three Reasons
Comment by Christopher Kaufman — March 24, 2007 @ 5:40 pm
You know, I have never met the men on this site, but I feel like they’re my “brothers.” We’re all members of The Club, which is made up of men who have been diagnosed with prostate cancer and are living. Of course, some of our brothers have succumbed. 12% of the men who have prostate cancer in a year wind up like them — dying from it.
I go back Monday to find out the results of my 6-month prostate cancer screening. So far, I’ve been cancer free for 5 years.
I’ve even started my own blog:
http://www.nubella.com/content/blogsection/108/8050/
I’d love to hear from you guys!
Your Brother,
Steve
Dallas, TX
Comment by Steve Smith — September 14, 2007 @ 2:00 pm
I found this blog about one month ago when I learned that I have prostate cancer. I have chosen surgery and will have the procedure in two weeks. But I am concerned about Dan, after reading the entire blog, I noted that there has not be a post in almost 15 months. Dan, I hope that you are doing well and don’t feel the need to post. Your blog yields much insight into the psychic and physical trauma of a receiving the diagnosis. I read Dr. Walsh’s book prior to the biopsy results and I think that book and your blog helped my wife and me through those trying times. I know that there is a long, uncertain road ahead, but I just wanted to thank you and your wife for your candor , understanding and willingness to share.
Chuck
Comment by Chuck Haine — June 13, 2008 @ 1:01 pm
Chuck,
Thanks for the kind words. I have not been posting a lot because I don’t need to focus on Cancer. I am as of March exam cancer free. So I choose to live my life as this is the main lesson I have learned from this experience is Carpe Diem. I think as you progress down the path you are going you too will find that ALL you have it today so cease it today. Good luck to you and make sure you have a second opinion on your case and that you are TOTALLY comfortable with your treatment plan.
d
Comment by Dan — June 14, 2008 @ 11:47 am
Dan, Think your blog and your story are compelling — would like to make you a featured health blogger on Wellsphere - email me for details!
Cheers, Geoff
Geoffrey W. Rutledge MD, PhD
www.wellsphere.com
Comment by Geoff Rutledge — June 19, 2008 @ 12:27 am