Well here it goes...
the skinny on the down low, lay it down from top to bottom for ya
(been watching snowboarding lingo)
Bare with me if I ramble on... but from the top...
Hindered by an aching back that intensified to a point that I couldnt walk, I went to my primary care provider. The standard MRI was ordered of the problem area, in this case, my lower back. The pain was immense, crippling really. I could not walk, stand or do much more than lay flat. The MRI results come in, and immediatlely I could tell that I was in for a ride of a lifetime.
From that day on I was in and out of the hospital, unable to walk. Tremendous amounts of pain in lower back, and through out my legs. Test after test and scan after scan yeilded the same responses. Doctors can see that there is a "large poorly defined mass" on my left kidney, and "large marrow replacing lesions or tumors riddled throughout my spine and other bones".
To aggressively combat cancer, you have to know exactly what type of cancer you are fighting. Their is thousands of chemical therapies and treatment combinations available, but the proper recipe is crucial. There in lies the problem with me. During my first stint in the hospital, a biopsy was taken of my lower back, where a majority of the tumors in my spine were causing trouble. That biopsy was viewed locally and although the biopsy itself was a good sample, the results were not convincing enough to label it as a "______" cancer. The initial diagnosis was a Renal Cell Carcinoma (kidney cancer) that spread to my bones, primarly the spine, but it wasnt a certain match. Without that definate label, treatment would be difficult to plan.
I had alot of people locally stumpped. Nothing fit, nothing made sense. Dr. Paloyan, my oncologist, suggested that he call Dr. Stadler at the University of Chicago, who specializes in Renal Cell cancers to get his opinion and setup a consultation. Dr. Stadler agreed and the appointment was set. The plan or hope was that although I am a rare case, the specialists in a large market like Chicago would be able to recognize something that they could build off of and get a plan of attack.
Meanwhile, I had been admitted back into the hospital for pain management and to start radiation. The main goal was to get me walking again. Although my bones are litterally riddled with tumors throughout my body and head, there are two primary areas of concern in my back that are dangerously close to doing permenant damage to my spinal cord. The plan was to get me into radiation, addressing those two areas and hopefully get me back on my feet and to Chicago for the consultation. The plan worked, I was able to get up and out of the hospital with the assitance of the walker seen below. I continued radiation, and medication, waiting for the appointment in Chicago.
Last couple days leading up to the University of Chicago appointment, I had been feeling better and better. I was able to get through the day and function a bit better than the day before. I was still very weak, still needed the walker, but I was home. Only real cause for concern at this point was some recent heart issues. The "mass" on my kidney, the anxiety of being 29 years old with cancer, and the "unknown", would cause anyone to have high blood pressure. It did me. But it wasnt only high blood pressure... it was a sudden racing of the heart...so much so that my left leg would bounce off the recliner every heart beat. It felt like my heart was going to rip out of my chest. To compound matters, this all happened 15 min before we were setting off to Chicago.... I want sure what to expect. It was going to be a long day.
The Chicago expirience was just that. The sheer volume of people that go through that facility is mindnumbing. It truly is overwhelming. "Personal" or "comforting" are not two words I would use in this paragraph to describe the visit. The doctors and staff are very knowledgeable, direct and to the point. They looked at my records, scans and blood pressure and immediatly wanted to admit me right there and then. I kept my composure wile anticipating sobering, blunt news. Dr. Chen was assisting Dr. Stadler in getting the ground work for the consultation out of the way, you know the vitals and basic physical exam behind the curtain....
(side note) Its a special kind of relationship you have with a young male doctor who has his hand in your groin region while your wife and parents reside behind a paper curtain, commenting on how "Dr. Chen looks and acts just like Derek"..."Derek who?"... "Mike's cousin Derek". There I am with nothing more than a purple nitrle glove between my last bit of dignity and Dr. Chen's left hand, trying to apologize for the company I keep (end of side note)
At this point the its late, the once packed, humid waiting room in suite F of the 6th Floor is empty. Stacy, my parnets and I are tucked away in a small exam room with Dr. Stadler and Dr. Chen, hashing out symptoms, tests and their meanings. After alot of head skratching, and statistics thrown my way, they reveil that they really dont have any idea what I have. Never seen anything like it. They would put me in the .02% of unknown cancer types out there in the world. They mentioned a big word that it maybe could be, but they have never known of anyone with it and its really rare and I am too young for that and they only read about it once in med school etc........ They again asked if I could be admited right then and their, to get things undercontrol. I figured with my .02% type of luck, I would roll the dice and head home for a good nights sleep in Baroda. They sent me with a few prescriptions for blood pressure and heart rate and we were on our way. Dr. Stadler and Dr. Chen both agreed that they could not do anymore for me than Dr. Paloyan could and that I was in good hands. The assured me that the treatments they or anyone has are any different or better than what was availble to me here locally. They mentioned one last ditch effort of a test to rule out pheochromocytoma. It was a simple urine test. After all this, it comes down to me and a jug.
By the way, for those keeping score... what ever I have has Mayo's baffled as well. The biopsy was examined at the Mayo Clinic with the same determination. From what I understand my particular case was brought up in various meetings of the minds in Chicago and here locally where various opinions and suggestions were thrown out there by experts as to what this could be, and what avenues of investigation they should travel down. Thats one good thing about being so young with something that no one has seen, it gets attention.
The trip home was quiet, but surprisingly still positive in my corner. Really, when all was said and done, the trip gave us the reassurance that we had the right team, and resources in place here locally. The trip home was sidetracked by an extended visit to the Michigan City Olive Garden. Horrible service, or lack there of was complimented by a socially challenged family next to us that was overly proud of the fact that their 42 month old child could say the names of the people sitting by him. Lets just say that the boy, although he was special, was old enough that language and cognitive thinking shouldn't have been a surprise or source of hope.
One last stop at the 24hr Walgreens on the way home to get the last of the 26 pills a day that I take and we finally called it a night, hence the post below "My life as I know it..." on the 16th.
Now on to Wednesday morning. We start the day as usual. This day though we are headed to a 9:15am appointment at Dr. Paloyan's to get a plan. I roll in with as much swagger as a 29 year old in a walker can. I take a seat in the waiting room next to my people, plus one. That one is my Grandma. Shes in great spirits and is their with my Grandpa who is in back about to start his first chemo treatment. About that time I hear "Kacynski"...so I mount up the walker and just round the corner to see Bill.... my grandpa. Here he is, 50 years older than me, in a similar battle...not a word was spoken... deliberate eye contact was made, our left fists raise in unison, knuckles smash against each other and I rolled on passed. Neither of us missed a beat, as though we knew what we were their for and the time had come to face the music.
The meeting with Dr. Paloyan went very well. We all felt we were on the same page with the same common goal. Its a realistic and obtainable feat. We dont know
exactly what we are up against, but we have a pretty good idea. Their are alot of options on how to fight this, but I am young and strong which will play into my favor. Basically its going to be a trial and error type deal to see how this disease and my body react. I am responding well to the radiation and medication now. That will continue through February and March 3rd I will start the long process of chemo threapy. The kidney may have to come out at some point and more treatments may follow, that is yet to be determined. There are alot of varibles and alot of unknowns.
The results for this urine test may determine that I do indeed have pheochromocytoma, which would be a concrete diagnosis and easier to nail down the proper recipe of treatments. At this time they are approaching it as a odd form of Renal Cell Carcinoma that has spread to my bones. The hope is that a combination of the drugs used in Renal Cell Carcinoma treatments will have positive effects on what I have.
All and all we are on the road to recovery. Its going to be a long road, as we expected. There is no cure, but there is hope to get it controlled, in a remission and hopefully restore a somewhat normal way of life. I am very optimistic that this will happen. I am better today than yesterday, I keep saying that, but thats a good thing. This entire expirience has made not only me, but those around me stronger and better individuals. It has put lifes importance into perspective. I still have the same dreams, and aspirations. I will still be the husband and father I wanted to be before this. I will still work hard to be a productive citizen. I will still build cool old cars.... just now those things have a little different meaning to me than before.
Meanwhile... I think its time for a fruity laxative drink and a nap, ha.
