SURVIVORS UNITE

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Comment by Mike Jones on October 11, 2009 at 8:56am

What I want you to know about my fight with cancer.
Been Battling colon cancer stage 3, for over 2 years, July 13, 2007, and beating it....
Survived 10 operations and or procedures. Not officially called a survivor till after
5 years of no re occurrence. I have blood work done every 2 months for the next 5 years.I have one more procedure left in Sept. and one surgery left in Oct. then I'm done with everything they can do for me. With the grace of GOD and my Caregivers I will make that 5 years and longer.....
My journey through cancer. Went thru 5 weeks of radiation, and 3 months of chemo, Then 3 surgeries, and 4 procedures to put my body back together. Then 10 months later had to go back on chemo for another 4 months. This was to improve my 60% survival possibility.Once a week I would go to the cancer center for my 3 hour treatments. It took 2 hours to prep me for my chemo push treatment, half hour to inject my high dosage of chemo all at once.
The treatment nearly kills you because you get so much chemo all at once, then it takes a half hour to get well enough to leave the cancer center, because you get sick, very sick quickly, and your energy just drains out of you all at once. I tried to work through getting my chemo treatments, but only made it a month and a half before work sent me home on medical leave.
Between working flights I would go into the Supervisor's office and lock the door. and curl up in a ball on the floor, because I was in so much pain. It wasn't till one of the managers saw me laying on the floor in pain that work sent me home.A week later I was in the hospital I had a temperature of 104 degrees, because I had a infection that ate a hole in my intestine, and the infection was causing gangrene inside of me. Every couple of days doctors would go inside of me, and clean my insides, till the infection could get under doctors control.
Then was told twice I had terminal cancer, because it spread into my nymph nodes, had 20 of my nymph nodes removed at surgery. Had another surgery due to complications of the radiation and MRSA infection, then 2 more procedures due to doctors saying my cancer was now terminal.
Two times test showed the doctors were wrong, I did not have terminal cancer, they waited both times over a week before they told me that the test were wrong.Went from weighing 185 to 130 pounds, I'm now back up to 178 pounds
(my fightin weight...lol) caught the staff infection MRSA again after I totaled
my motorcycle, which almost killed me also, (yea, I know what your thinkin...lol).
The second time through chemo thought I would play it safe and start training for Triathlons again, before cancer I did Ironman distance Triathlons. 3 weeks into training, I was on a ride and did a bunny hop over an obstacle. When I came down my handle bar snapped and I went down. I broke my arm in 2 places. but didn't go to the doctor for 2 days, I didn't want to wreck my weekend plans.Told the doctor not to put a cast on it because I would not be able to work. They will send me home if I come in wearing a cast on my arm. They put it in a removal splint which I took off the second day I had it on.
The pain from a lightly broken arm, does not even come close to the pain of chemo treatments. So I just dealt with the pain, so I could keep working. The after affects from my chemo, the bottom of my feet always feel like when your arm falls asleep, then you feel the needles in your arm waking you up, I have that feeling on the bottom of my feet whenever I walk, and my thumb twitches whenever I get nervous.
During this time of my battle with cancer, I have lost people I thought were friends, I have lost my home, and lost my motorcycle which I bought as a reward for surviving my first round of cancer.
What I gained from this battle is true friends, and friendships, a close and deepening relationship with GOD, and the knowledge that life is precious, both mine, and yours. Trust, Respect, Honor and Loyalty are what now guide my relationships.
Mike Jones
Gilbert, Az.

Comment by kerri on September 11, 2009 at 8:22pm

Hi I'm a runner and cancer survivor, I now offer Reiki healings and classes for donations. Donations go to help women with cancer. I'm just happy I can give back.

Comment by Art Wagner on August 11, 2009 at 12:28pm

Bill:

Thanks for the note. Glad to hear you continue to do so well and stay so active. Your positive outlook is really inspiring. I'm doing great now and after a couple of more conversations with my doctor, feel more confident that everything is going to work out for me well.

I've been back in the pool last week and this week. Still feeling a little tired but looking forward to getting back in pre-op shape soon.

Art

Comment by Bill Doolittle on July 31, 2009 at 5:29pm

Hey Art.

The worst is certainly over and you hit the trifecta!.....

1. The Dr. probably saved your life...
2. You preserved your continence...
3. You preserved your potency....

I had DaVinci and my Gleason went from 6 to 8 post surgery with a postive margin. That was 18 mos ago, I am still active and kicking around triathlons and my PSA has been negligible since. The milestones are apparently 2 years, 5 years and 10 years when you are considered "cured". I had no radiation, even with the gleason at 8. I trust the Mayo Clinic in Phoenix knows what they are doing and you will do great as well. Put that 3000 Cancer gorilla back in it's place and just take things as they come. Sounds like you have lots of folks who care and are concerned for you and you have a beautiful family that cares as well. You will do fine! Let me know if I can ever help...drop me a line at BCDOO@aol.com if you want.

Best,
Bill

Comment by Art Wagner on July 30, 2009 at 10:17pm

Hi everyone! My recover was going very well until yesterday when I received news about a bit of a setback. My final pathology came in and there were positive margins on one side of my prostate. My doctor tells me not to worry and that he's still confident that my first post-op PSA scheduled for August 31 will show undetectable amounts. If that's not the case, I'm looking at radiation therapy. He also suggested that I may want to consider radiation even if my PSA in undetectable just to make sure all of the cancer is gone. This was a bit of shock and my doctor was surprised. He said my prostate came out very easily and was smooth. My final Gleason was a 7 but with only 5% of the cells being at the 7 level.

Anyone else out there have positive margins with a good outcome?

Kara: Thanks so much for your note and Dave's email.

Dave: I was clicking along fine so I didn't want to bother you, but thanks for being there if I need to talk.

Everything else is going well for me. I'm already 100% continent and had my first unaided erection today - yahoo! Now if I could just get this news of positive margin out of my head and cleared up!

Art

Comment by gretarose@athletesforacure.org on July 23, 2009 at 4:57pm

How is everyone doing in this group? Art, hanging in? Update us when you can...

Comment by Art Wagner on June 29, 2009 at 9:46pm

Jim:

Thanks so much for your note. I'm finding that there's a fine line between getting good information and getting too much information. I especially appreciate the comments from a young physician who also went through what I'm about to go through myself - so thanks again.

I have a ton of questions. Some have a need for concrete answers while others are just looking for reassurance. Intellectually, I fell pretty confident that I'll come through this ordeal well. Emotionally, the fear at times is pretty consuming. I feel fine, how can this be happening to me?! What will I be like after surgery? I'm 48, so a bit older than Dave and you when you went through it, but still in a little disbelief that this is really happening to me.

I too consider myself incredibly to have my wife at my side. She has been there to hold me up and assure me that everything is going to turn out just fine.

Maybe it's a good thing that I'm so worried about the surgery itself, that I haven't had a chance to really worry too much about the recovery. I know it's not going to be an easy road, but I suspect that I'm going to be so relieved when the surgery is over that I'll be able to handle recovery better. Then again, I'm not good just laying around so not being mobile right away may come with its own set of anxiety for me. I'm glad to hear that you recovered well enough to do a sprint tri in just eight weeks.

Thanks again!

Art

Comment by Jim Walters on June 29, 2009 at 8:06pm

Hi Art,

I know how you feel. I had about four months between my diagnosis and surgery day by the time I got through travelling for a second opinion and scheduling surgery. I had a Gleason score of 3+3, and by the week of my surgery my PSA had gone up to 10.1. By that time I really started worry. I too was afraid of anesthesia - I hadn't gone under since my tonsils at age 5. As a physician I could understand the science of the articles I was reading, but as time went on I realized that what I really needed was to talk to someone close to my age (41) who had been through it. I read stuff on the internet late at night and then again early in the morning for many weeks. OK, I admit, months. Kara is right. Try to limit how much you read or at least pick reputable sights and ignore the stats (many are 15 years out of date). Darren didn't have his blog yet and this site wan't here. I felt very alone in terms of getting my questions answered, but had the tremendous support of my wonderful wife. She stood by me me as I cried in my beer many a night.

A few weeks before my surgery I was introduced to a friend of a friend who had been through robotic surgery 2 years before me - also at the age of 41. We met for dinner and he encouraged me to ask any and all questions. It was more help than all the books and reading I had done. His wife was there too, and was a great help to my wife, Molly.

My surgery went well. I didn't have much pain, but I was exhausted for almost a week afterward. My final Gleason was 3+4. It's very common to go up one point with the final surgical pathology, so don't be surprised. Just when I thought I would never get my strength back, one day a switch was flipped and I was back on track. I found out about AFAC near that time and set my course for a sprint triathlon about 8 weeks post surgery. My wife got inspired and completed her first ever triathlon with me. I'm now heading toward doing the same traithlon one year later with a PSA of zero. I'll never forget how anxious and scared I felt waiting for surgery, or how much it meant to sit and talk to my new friend who was a survivor. It's clear that any of us on this site would answer any questions you have at any time. There are certainly going to be many specific ones that come up after surgery, and I hope you feel free to ask us here or by an email. By the way, I think I stayed awake less than 5 seconds in the operating room. Once I woke up, I've also been proud to be a survivor just as Dave said below. Best wishes - it sounds like you're in good hands!

Jim

Comment by Kara Deschenes on June 26, 2009 at 7:55pm

Hi Art,
My name is Kara and I'm the wife of a survivor- Dave Deschenes. Dave was 38 when he was diagnosed and it turned our world upside down. The little bit that you shared sounds very familiar to the situation Dave was faced with. His PSA was an 8- and Gleason was a 7. His cancer was contained only in the prostate, and was all removed from the robotic surgery. As for the general anesthesia- try to relax. I've been under myself a few times, and Dave has too....you will be fine. When you get to the hospital, tell them you are very nervous and ask them if they can give you something to relax...it will help take the edge off before the process begins. From your picture- you look young- which is really a benefit to you. Dave's had such great results because of his age. The doctor said he was able to recover so well because his muscles were in good shape and he was otherwise healthy.

Try to stay away from the internet in terms of research. This site and the people you meet here are good resources, but be careful of straying too far away. Dave and I learned very quickly that researching using the internet was not helpful because all of the information out there is based on older men (typically over 70 years old). It only scared us, and didn't help. As hard as it was, we stayed away from the internet for information. We didn't hook up with AFAC until after Dave's surgery- so I didn't know about them as a resource- but having been involved, and meeting both Scott and Greta personally- I would absolutely use this as a resource...you will meet good people here to help be your cheerleaders during this time.

The only other piece of advice I can offer is to lean on your wife. While she's your #1 support, the position she's in is very tough too (not that you didn't know that- or not to give you another thing to worry about). Together you will fight the cancer, and come out stronger in the end. Involve her in the process. Don't be afraid to ask for help. She wants to help you in anyway she can- but may not know how or what to say....

Please pass along my email address to your wife too- I was in her position and now how hard it is. I'd love to be her cheerleader too...she will need it. My email is kdrungirl@gmail.com

My thoughts and prayers will be with you and your family- you are in good company here. I admire your courage in posting your apprehension and asking for help- that's the first step to survivorship!

:) Kara

Comment by Bill Doolittle on June 26, 2009 at 7:42pm

Hey Art,

It is natural to be nervous, for sure. But, I believe the big guy never gives you more than you can handle and, as an athlete, I am sure you are in shape and prepared to go! I am 58 and did the Disney Tri 7 months after robotic lap surgery in Feb 2008. 4+4 gleason, T3a...nasty. But, I'm still kickin' and training for my tris this year...never give in!. Look...as Dave said: none of us sign up for this...but we are all survivors, cancer sucks but your friends and family will pull you through for sure. Just remember, most of the conditions and hassles you have to put with are temporary and you will do great! If you are ever wondering about anything, drop me a line or contact me and I'll be there for you 7x24. All the best, Bill

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