My Cancer Story
Hi.. My name is Kenny and as I sit here on June 2013 at age 57 and compose this story, I am sitting in a comfortable easy chair receiving a chemo infusion of a new experimental drug as part of a research program to find new and better drugs to battle cancer with. With time on my hands I thought it would be a good time to tell you my story and I would love to hear yours too.
It was early March 1999 while taking my normal morning shower, I noticed a small bump on my groin area, I thought, eh, maybe I got bit by something in the yard but didn’t think much more than that about it, however, a month later I noticed that not only was it still there, it was growing larger, still thinking it was no big deal I again didn’t give it much thought especially since my sixth child was due to be born in late March 1999 and I had so much on my plate keeping up with work, preparing for a newborn, kids soccer practice, baseball games, school events, yard work, side work to help pay the bills, whew.. Makes me tired just thinking about it! My life was a real GO GO GO lifestyle and it just didn’t allow much time to dwell on small issues, besides, I was healthy and worked out regularly so whatever it was, it couldn’t be that big of a deal.
In a subsequent conversation months later with my older brother, we somehow got on the subject of body aches and pains and how they were getting worse as we got older and he had told me about a hernia he had to have looked at by his doctor. I remembered my little bump on my groin which by then was a bulge and when i told my brother about it, he had me convinced that I had a hernia and needed to go to the doctor to get it fixed. Soooo.. with some hesitation, I made an appointment with my primary care doctor, It was now August of 1999, five months after I first noticed the lump.
The visit to the doctor was routine I thought, he examined me, looked at my bulge in my groin, poked and prodded and I had my eyes glued to his face looking for any tell-tale signs of him seeing or feeling something he didn’t like. As he examined, I studied, I didn’t like the look on his face, a frown, a wrinkling of the brow, a long listening with the stethoscope, I could tell he was concerned. When finished, he looked towards me but wouldn’t look me in the eye, and said, “I don’t think it’s a hernia, we need to get a CT scan and see what’s going on here”. Having taken the day off of work I had the time to get it done right away so I said, “let’s do it” and after the doctor made a few phone calls, I was off to the diagnostic center to get a CT scan. Cautiously concerned but still thinking the results would be no big deal, I thought, cool, after the CT scan I will go back home and get some work done around the house.
It wasn’t more than an hour after the CT scan, I was at home getting busy when I get a call from my primary care doctor’s office telling me that the doctor needed to see me and my wife right away! I thought,” Oh boy.. that doesn’t sound good!” on our way I’m thinking, I eat right, I don’t smoke, I don’t do drugs of any kind, I work out regularly, what could possibly be wrong? Could I have a bacterial infection, virus, a cyst, what could possibly be that bad that both me and my wife needed to come in? Now I am genuinely concerned and a little scared!
My wife and I get to the doctor’s office and they take us immediately into a room, when the doctor comes in abruptly and closes the door behind him. He looks right at me, right in the eyes this time and says, “ Mr Bucek,You have cancer” …. WTF? Say what?.. come again? Did he just say that? Talk about your shitty bedside manner. I looked at my wife and she looked at me. I saw a look of terror on her face! I asked the doctor, “are you sure?” he said “I believe that you have a form of cancer called Lymphoma” I had never heard of that before, I thought, cancer is cancer and if you get it, you’re a dead man! The doctor said that he was making me an appointment with an oncologist that was local that had a very good reputation for treating all forms of cancer. I had heard the word oncologist but had no clue what they really did. This was my worst nightmare come true!
My mind instantly jumped into hyper drive with a kabillion questions! (I know that “kabillion” is not a number but if it was it would be huge ! ) I’m only 44 years old, I’m too young to have cancer, how did this happen? How long do I have to live? How will my wife and kids survive without me? Why me? What did I do wrong? Could I survive this major gut punch? Would I be able to continue to work to support my family? The questions just kept coming and coming but the answers were nowhere in sight! And the cost, OMG the cost! what would that be? I was lucky to have good insurance from where I worked so I was not worried so much about the cost and after calling my insurance company I was assured that I was covered. Whew… that was a relief!
My personality is one of “there is always a solution” “never give up” “don’t feel sorry for yourself, FIGHT BACK !” type. First, I needed to know all the details! My past training in Karate and in business management taught me that first, you must know your enemy, find his weakness, only then can you defeat him! So… thanks to the internet, book stores and the library, I was able to find books, research material, survival rate stats, treatment options, oncologist history and qualifications, I felt like a machine, need data, need data, input, input, input! I had to know everything about the enemy inside me I was dealing with and how I was going to fight this attack on my body.
Two days later it was off to the oncologist for my first exam with him where he takes blood samples, bone marrow samples and feels all over my body. He lets me know that the CT scan showed several small tumors, swollen lymph nodes and informs me that I will need to have surgery to get a swollen lymph node taken out so it can be examined in the lab to see if it was indeed lymphoma cancer and if it was, what the exact type of cancer it was. You mean there is more than one type of Lymphoma? I ask, Yes he says, there are many types and all need to be treated differently.
I sign all the needed consent forms and go under the knife several days later. In the mean time I put my own research into high gear and read everything I can get my hands on about the disease and how it is treated and what to expect for side effects.
The official results showed stage three “Low grade, Diffused Large B-cell Follicular Non-Hodgkin’s Lymphoma”, it’s non curable with an average survival rate for a man of my age of 10 years with proper treatment, bad news indeed but being highly treatable with much success and lots of new drugs and treatments coming online all the time, I am encouraged and decide I can fight this enemy and live another 20 years at least! So.. The doctor scheduled me for my first chemotherapy treatment. I won’t go into all the details but suffice it to say that it was a very strange feeling with lots of small but temporary side effects. Because of my relatively young age (44 at that time) and being in good physical shape, I tolerated the treatments very well. The treatment was effective and subsequent CT scans showed that the swelling lymph nodes and tumors were shrinking, a good sign that the treatments are working! The first wave counter attack of the enemy within me has been a success and the enemy has been beaten back!
Time marches on and the enemy keeps mounting new attacks, 2001, back for more chemo treatment and in for major surgery to have a portion of my left lung removed due to a tumor forming there. 2004, another round of chemo. 2006 again the relentless enemy attacks, more chemo!
Fast forward to 2008, my whole world comes unraveled. Being in the construction supply business, when the economy collapsed, construction came to an abrupt halt. Layoffs were eminent and it was just a matter of time before the ax would swing my way. Eventually I found myself out of a job and no jobs to be had in the construction business, I am screwed! I have no income, my wife does not work, 6 children and a wife to take care of, bills to pay and I am now in a panic because I have no insurance and discover that I am a marked man in the insurance world, I have a preexisting condition! I wish I could express without using profanity how I felt about insurance companies at this point, but I can’t and I won’t, I get it! I understand that insurance companies are in the business to make money, not to help people no matter what image they create for themselves! I am now too much of a risk and they know it! They would pay out way more than they would make from me if they gave me a policy. Could I still get one? sure but i’m thinking the cost would be enormous and the deductibles outrageous! I’ll have to see what I can find.
Over time the stress on finances, emotions, the family, the kids, it is just too much, my marriage of over 30 years collapses and the family breaks apart, now mind you this wasn’t the only factor but surly a major contributing one. I have reached the bottom! Never have I felt so defeated! I contemplate just ending it all! But in my heart and by my faith I feel that is the cowards way out! So I dig down deep inside myself and say… Now look !! Since you’re at the bottom, there’s no where else to go from here but UP!
SO… STOP feeling sorry for yourself, get off you ass and start climbing, You can do this!!
My only choice for work at this point is to choose a new career path and since I already had a real estate license but was inactive in that industry, I figured foreclosures would be everywhere because of the housing collapse and I thought I could cash in pursuing that niche so I activated my license and that’s what I chose to do. The major drawback is that this career is entirely commission based with no group medical benefits so now I will have to pay for an insurance policy completely out of my pocket, this policy would be VERY expensive since I have a preexisting condition and deductibles will be enormous! I sigh and say to myself “this approach had better work.”
The enemy keeps mounting new attacks. At this point I have had four rounds of chemotherapy over the years due to the recurrence of the disease. The enemy is persistent and doesn’t just roll over and die but keeps mounting new assaults. The good news is, I am stable for the time being but I know it is just a matter of time that I will need treatment again and knowing that the insurance company had paid countless thousands of dollars per treatments, CT scans, PET scans, blood analysis etc. that I now I would have to pay for all that out of my own pocket is very scary. When I checked on how much an insurance policy would cost me, I was not very surprised to find out that no insurance company would even touch me with a ten foot pole due to my preexisting condition. That’s it then… I’m on my own.
October of 2010 I notice lymph nodes in my neck swelling again, a sure sign that the enemy had returned to mount another attack! Now I thought to myself, all these great medical weapons out there that the oncologist can use to fight this enemy but without the money or the insurance to pay for them my chances of fighting back now have been severely crippled, what was I going to do now? Was this it? was this the end? was it sunset for me?
Once again I hit the internet to do research on how it could be possible for someone with no insurance or the colossal amounts of money needed to get the treatment so critical to his battle. Medicare? This seemed to be the first option, but I was not anywhere near the extreme poverty level required for that option. Friends and family was another option but I refuse to shift my burden on them! Then while at my oncologists office my interest was piqued by something very interesting. “Clinical trial” My Oncologist had begun a research department to help in assisting drug company’s in testing their latest drugs. After much research, I found out that drug companies are constantly working on new and ground breaking drugs to battle the enemy but must test these drugs on human subjects in a very cautious way.
A clinical trial basically, is a four stage process to test new drugs for specific types of cancer that show promise in fighting the enemy. Stage one test is usually a small group of real people who volunteer to take the drug provided they meet all the criteria of the test outline. These brave soldiers are closely monitored and completely documented for any unexpected results or reactions. If the results are positive than stage two is ordered. Armed with the results of the first stage results, scientists make any modifications to the procedure and dosages and proceed with a much larger group of brave solders willing to put their bodies on the line to help their fellow soldiers. If stage two is successful then stage three is ordered and then stage four. If after all this testing the drug shows good potential to help treat patients, then it’s off to get FDA approval and be released to the public to add to the arsenal of weapons in the war on cancer. These clinical trials typically are either fully or partially paid for by the research company doing the study.
That’s it!!! That’s the perfect solution!!! I have always wanted to give back and help others in this ever-growing battle and offering my body to help test these new more effective treatments while at the same time fighting the enemy inside my own body is the perfect solution. Is it risky? yes it is, and some first stage soldiers do die from these experimental drugs. But I have faith in science and the huge strides researchers are making. So today, after signing all the forms needed to accept all the liability and responsibility for this risky new drug on my body, here I sit, receiving a stage two test of this new experimental drug!
I have come a long way these past 14 years, I continue to fight the enemy within me, and I realize that I will be in this battle for the rest of my life! My battle scars are many, damaged veins, part of my left lung surgically removed, family torn apart, the emotional scar of constant worry of when the enemy will attack again and where? will it be on a vital organ that can’t be treated? I feel like a Cancer Warrior! A battle weary Cancer veteran.
I will NEVER give in, I will fight back with everything I got and when the time comes, I will leave this earth swinging and fighting till my last breath! The gifts of life, love and family are well worth the fight!
The thought occurred to me that there must be thousands of people out there that are in a similar battle as I am, that need hope and encouragement, to know that they are not alone in their fight and maybe even need some financial help! I decided to launch this website to bring hope to others by having them share their stories, share information, educate, sponsor fund raisers to help people pay for these critical treatments when they can’t afford it. My hope is also to motivate you to not give up, it doesn’t matter how much of a foothold the enemy has on you or what stage you’re in or whether you can pay for treatment or not ! There is ALWAYS a way !! You must dig in your heels, get off you ass and choose to..
F I G H T B A C K !!
Battle that enemy within you!
Thanks for reading my story!