How I got here, then and today: Meet @kujhawk1978

Jun 6 8:00am | John, Volunteer Mentor | @johnbishop | Comments (18)

@kujhawk1978 at Crater Lake

JOHN: What brought you to Mayo Clinic Connect? 

@kujhawk1978: When my urologist diagnosed me in January 2014, he reviewed the biopsy report with me. I remember his closing out the consultation with “Kevin, that’s a pretty aggressive cancer, do you have any questions?” I had no idea what to ask, in part because I was woefully ignorant, and part because I was still in shock, reeling from the diagnosis. The only question that came to my mind, “what’s a prostate!?” I did not ask it, simply said, “no,” shook his hand, and followed him to the scheduling desk where he used the term NDC in describing me to the surgery scheduler. I had to ask what that meant. It did not help me move out of my shock stage when he told me it stood for “newly diagnosed with cancer.”

Time marched after a very successful surgery until one day, my surgeon hesitated when viewing my quarterly PSA (prostate specific antigen) result, finally turned to me and said my PSA was 0.2 but that did not mean my prostate cancer was back, right…! Three months later, it was 0.3 and he talked about SRT. Again, I had to ask…what is that!?

I began doing literature searches using the internet. There was data from Mayo Clinic and clinical trials that in individuals with my clinical history, BCR (biochemical recurrence) often had already spread to the pelvic lymph nodes and the best treatment option was SRT (salvage radiation treatment) to the prostate bed, extend the radiation treatment to the whole pelvic lymph node system and include six months of ADT (androgen deprivation therapy). When I discussed these findings with my urologist and radiologist, they dismissed them, saying there was no long term data. I acquiesced, the SRT to the prostate bed only was an epic failure. 

As my PSA continued to climb, I sought a second opinion and was able to obtain it with the Director of Urology at National Comprehensive Cancer Network (NCCN) Center. Results from the CHAARTED and STAMPEDE clinical trials showed triplet therapy was effective in individuals with my clinical data. He dismissed my ideas, said he would put me on ADT, monotherapy, and didn't even consider imaging with either the prostate-specific membrane antigen positron emission tomography (PSMA PET) scan or choline C-11 PET scan that were in clinical trials at the time. Yes, I fired him!

I came across Mayo Clinic urologist, Dr. Eugene Kwon’s videos. I was intrigued by his ideas and concepts of combining treatments, bringing them forward in the disease state when the synergy could be more effective than linear and sequential treatments, each destined to fail, then death. I was able to set an appointment with him, which changed my life! I am not sure I would be alive today had I not.

There were no online forums such as Mayo Connect where I could connect with others who were members of this club, and could ask and share patient knowledge and experience. I was on my own, learning, engaging in discussions with my medical team.

So, when Mayo Connect came along, I was intrigued. Here I could harness the intellectual power and experience of other patients as well as contribute mine, all for the betterment of our lives.

JOHN: What motivates you to take part in the community?

@kujhawk1978: I have been fortunate. Although I have an aggressive prostate cancer, it has never spread to my bones or organs. I have had the insurance necessary to cover all my appointments, procedures and medication, without financial toxicity. That does not mean my journey has not been filled with treatments, surgery, SRT, triplet and then doublet therapy. I have learned a lot through my experience and continue to learn. It is that experience and knowledge from a patient perspective which I share with others. I share not to tell others what to do, but offer ideas of how to think about making their decisions.

 JOHN: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@kujhawk1978: I appreciate that the members are generally universal in following the forum rules, whether formal or informal. We understand nobody is trained, educated, board certified, or licensed. We are laymen and patients, sharing our experience, knowledge, and support. Rarely do forum members attack each other. If it happens, cooler heads prevail and it is shut down quickly. 

JOHN: What support groups do you participate in?

@kujhawk1978: I participate in the Prostate Cancer support group.

JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.

@kujhawk1978: There are more than a few, mainly from other members who have said how useful my posts are. The one that stood out was from the Community Director, Colleen:

Thank You!

Your supportive and informative participation in the Mayo Clinic Connect community has not gone unnoticed in the prostate cancer support group. I appreciate how open you are with sharing your experiences and your collected data, as well as inspiring others to get informed to make the best treatment choices for themself. It is reassuring for new members and members who have questions to get a quick response from someone like you who has been there.

You have been there since the Prostate Cancer support group was new and your participation has been instrumental in making it the active and thriving support community it has become.

You are an asset to the group.

With gratitude,
Colleen

JOHN: What surprised you the most about Mayo Clinic Connect?

@kujhawk1978: The willingness of its members to share information, much of it personal in nature, knowing that doing so can help other members with answering their questions.

JOHN: What energizes you, or how do you find balance in your life?

@kujhawk1978: Well, there is that old saying that no one ever said on their deathbed: “I wish I had spent more time at work.” Still, there are the essentials that must be paid for, shelter, food. I am sixty-eight, still working because I want to, enjoy it, work with great people, make a difference and have a great degree of freedom.

I have passed the ten-year mark with this aggressive prostate cancer, indicated by my Gleason score, grade, time to BCR, PSA doubling and velocity times. My approach has been to be aggressive in my treatment while balancing quality of life. That means unless there is overwhelming evidence, my medical team and I (shared decision-making) make treatment decisions based on clinical data, for defined periods, with decision criteria when to discontinue the treatment, actively monitor while off treatment and decision criteria when to go back on – when, with what and for how long. 

My clinical history and treatment approach enable me to enjoy anniversaries, birthdays, vacations, graduations, and a wide variety of activities, such as skiing, pickleball, the Garmin Unbound 50 with my daughter and sister, father-daughter nights, attend concerts – Eagles, Billy Joel, Chicago, Bruce Springsteen – and witness sports events, like a NCAA  championship with my Jayhawks, a World Series with the Royals and three Super Bowls with the Chiefs.

JOHN: Tell us about your favorite pastime or activity

@kujhawk1978: Questions like these are difficult to answer. It's difficult to narrow it down to a favorite. I love to travel, especially to places that are scenic where I can be active and outdoors – think hiking in national parks. I was in the U.S. Army for 22 years, stationed overseas in Germany, Belgium, and the Netherlands for 12 years. I think the only country in Europe I haven’t visited is Portugal. Otherwise I’ve been from the Russian-Norwegian border down to Greece. The somber visits were the WWI and WWII battlefields of Normandy and the D-Day landing beaches.

The Ring Road in Iceland may have been my favorite. The national parks such as Rocky Mountain, Grand Canyon, Utah’s Mighty 5, Crater Lake (pictured above) were epic also. This fall, my wife and I will visit Glacier National Park then slide across the Canadian Border to see Waterton and Banff National Parks.

JOHN: Do you have a favorite quote, life motto or personal mantra?

@kujhawk1978: Trying to boil it down to  one favorite is a challenge. Considering I’ve been on this journey for ten plus years, if I have to choose, I would pick the song I play when the going gets rough - "If You're Going Through Hell (Before the Devil Knows),” written by Dave Berg, Sam Tate and Annie Tate, and recorded by American country music artist Rodney Atkins. It was released in January 2006.

Well, you know those times when you feel like there's a sign there on your back
Says I don't mind if ya kick me seems like everybody has
Things go from bad to worse, you'd think they can't get worse than that
And then they do

You step off the straight and narrow and you don't know where you are
Use the needle of your compass to sew up your broken heart
Ask directions from a genie in a bottle of Jim Beam
And she lies to you
That's when you learn the truth

If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out before the devil even knows you're there

Well, I been deep down in that darkness I been down to my last match
Felt a hundred different demons breathing fire down my back
And I knew that if I stumbled I'd fall right into the trap
That they were laying, yeah

But the good news is there's angels everywhere out on the street
Holding out a hand to pull you back upon your feet
The one's that you been dragging for so long you're on your knees
You might as well be praying
Guess what I'm saying

 If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out before the devil even knows you're there

Yeah, if you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out before the devil even knows you're there

If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out before the devil even knows you're there

Yeah, if you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out before the devil even knows you're there
Yeah, you might get out before the devil even knows you're there, yeah

JOHN: What do you appreciate the most in your friends?

@kujhawk1978: Well, like dogs, that unquestioning love whereby you can simply know that they are there, through the good and the bad.

JOHN: What food can you simply not resist?

@kujhawk1978: Well, that’s like asking “what’s your favorite…” question. My wife is an excellent cook and there is hardly a meal I do not like. Fortunately an active lifestyle and rigorous exercise program along with moderation in my diet ensure I do not become obese. Spaghetti carbonara is one of my favorites or any of the German meals she makes.

 

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@kujhawk1978, Thanks for letting us get to know you a little better! Most of all, thank you for all the support you provide in the Prostate Cancer group. Love the spotlight photo, looks like a great place to visit and enjoy nature's beauty and solitude.

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Happy to contribute!

Thanx

Kevin

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Thank you @kuihawk1978, for this glimpse of your amazing life, and for sharing your courage with us. I so agree with you on the wonderful help Mayo Clinic Connect is - such a blessing!
All the very best to you as you continue to go forward!.

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Great Spotlight @johnbishop, thanks for letting us get to know this wonderful member @kujhawk1978 . And thank you for your service @kujhawk1978. How appropriate your story came out today, June 6. D-Day. Thank you for sharing your story with us here on Mayo Connect.

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Hi @dess and welcome to Connect. Yes, we do have a Blood Cancers & Disorders support group. I’m one of the mentors in that group and would love to talk with you over there.
I read your bio and noticed that it’s been suggested you have a bone marrow transplant for your Acute Lymphocytic Lymphoma. That’s something I’m more than happy to discuss with you as well. I’m just weeks away from the 5th CELLabration of my bone marrow transplant for Acute Myeloid Leukemia. They are not the same disease but the potential cure for both is a BMT.

Here’s the link https://connect.mayoclinic.org/group/blood-cancers-disorders/

I haven’t found any conversations with members who have ALL, so I’d really encourage you to go to the link I provided and post a new discussion there.
Will you meet me there, please?

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I will. Mayo in Jacksonville Fl. Is my Dr office and Hospital.

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Love this tribute! It’s so inspiring! I appreciate that song!

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@kujhawk1978 Thank you for allowing us to know about your life and how you've thrived since the prostate cancer diagnosis 10 years ago. My brother was diagnosed with prostate cancer in 2020 and that's when I began reading the Prostate Cancer Support Group. (He's doing great and back to his active lifestyle). @colleenyoung Colleen has often told us that the prostate cancer group runs itself and now I know why. It's because you are in the group since the start as other supportive members have joined. I was talking with a high school friend a few days ago. He has an aggressive prostate cancer and as he began talking about his treatments including the most recent one (Pluvicto) I "knew" what he was talking about. And what I didn't know I typed into the search bar and easily found the answer in the Prostate Cancer group. Colleen's note to you extends my thanks for all you do here at Mayo Clinic Connect.

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@kujhawk1978 A very interesting article about a very interesting life! My husband (26 yrs) and son (23 yrs) were also in the army but neither was lucky enough to have 12 yrs in Europe! I’ve never had the pleasure of meeting you in person because I never go to the prostate cancer site. I keep more than busy with the autoimmune diseases and caretaking. But, I have loved e-meeting you and maybe I’ll be lucky enough to meet you in person!

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