Visitation
Sunday, May 2
2-6 pm
Starks & Menchinger
2650 Niles Road
St. Joseph, MI 49085
Funeral Service
Monday, May 3
11 am
The Chapel
4250 Washington Ave.
St. Joseph, MI 49085
Friday, April 30, 2010
Thursday, April 29, 2010
War of My Life
"Come out angels,
Come out ghosts,
Come out darkness,
Bring everyone you know.
I'm not running,
and I'm not scared,
I am waiting,
And well prepared.
I'm in the war of my life,
At the door of my life,
Out of time
and there's nowhere to run
I've got a hammer,
And a heart of glass
I gotta know right now
which walls to smash
I got a pocket
Got no pills
If fear hasn't killed me yet,
then nothing will
All the suffering and all the pain
Never left a name
I'm in the war of my life,
at the door of my life,
out of time
and there's nowhere to run
I'm in the war of my life,
at the core of my life
Got no choice but to fight til its done
No more suffering, no more pain
Never again
I'm in the war of my life,
at the door of my life,
out of time
and there's nowhere to run
I'm in the war of my life,
at the core of my life
Got no choice but to fight til its done
So fight on,
fight on everyone
fight on
got no choice but to fight til it's done
I won't give up
I won't run
I won't stop for anyone"
~John Mayer
Michael Vincent Kacynski
November 25, 1980-April 29, 2010
Come out ghosts,
Come out darkness,
Bring everyone you know.
I'm not running,
and I'm not scared,
I am waiting,
And well prepared.
I'm in the war of my life,
At the door of my life,
Out of time
and there's nowhere to run
I've got a hammer,
And a heart of glass
I gotta know right now
which walls to smash
I got a pocket
Got no pills
If fear hasn't killed me yet,
then nothing will
All the suffering and all the pain
Never left a name
I'm in the war of my life,
at the door of my life,
out of time
and there's nowhere to run
I'm in the war of my life,
at the core of my life
Got no choice but to fight til its done
No more suffering, no more pain
Never again
I'm in the war of my life,
at the door of my life,
out of time
and there's nowhere to run
I'm in the war of my life,
at the core of my life
Got no choice but to fight til its done
So fight on,
fight on everyone
fight on
got no choice but to fight til it's done
I won't give up
I won't run
I won't stop for anyone"
~John Mayer
Michael Vincent Kacynski
November 25, 1980-April 29, 2010
Saturday, April 24, 2010
A Loooong Week
This is Stacy (wife) and Angie (mom). We'll do our best to update ya! But we apologize in advance that we aren't as good of a writer as Mike is.
Last Friday morning (April 16) Mike felt short of breath and spiked a small fever. His dad took him into the oncologist office and they checked his oxygen level while he was walking in. It was somewhat low (in the 80's). Dr. Paloyan suspected that Mike could possibly have a rare pneumonia called pneumocystis (PCP). So Dr. Paloyan sent him immediately to get a chest scan at the hospital. The scan showed very small blood clot in his right lung. They admitted him and started him on blood thinners. Blood clots can form and break off in your leg due to inactivity. The blood thinners work to help dissolve the clot back into the blood stream.
Well...as the week progressed, Mike's breathing was still bothering him. They decided to put him on some extra oxygen. Nights were long, and he wasn't getting much rest. By Wednesday, the Dr's just weren't convinced that this tiny blood clot was causing this much breathing distress. Another one of Mike's Dr's brought up the PCP concern again. He said it is VERY common for cancer patients to get this type of pneumonia due to a weakened immune system and also from the high does of steroids. They started him on strong antibiotics to get a jump start on the infection (even though they weren't exactly sure it was that). They decided to do a bronchoscopy on Thursday morning (go into the lung with a scope and squirt some fluid, suck it back up, and culture it). The cause of this breathing distress could be due to a list of things: infection, PC pneumonia, or tumor. After the procedure, Mike was moved back up to his room to sleep off the sedation. He had a little bit of lunch and continued to rest while we waited for the test results.
Later that evening, Angie felt Mike and he felt extremely hot. His breathing was still very fast and his temp was actually rising by the minute. You could tell that Mike was exerting too much energy into trying to breath instead of resting to heal. We cooled him down with an ice bath and fan. Within that hour (which seemed like forever) it was decided that in order for Mike to rest and heal, it would be best to intubate him (put him onto a ventilator). Well, being on a ventilator requires you to be in ICU.
So...we made the move to the ICU late that evening. They got Mike very comfortable with sedation and pain medicine. We got to go in his room ( a couple at a time) to talk to him and give him kisses. They want him to be very sedated to rest and heal, otherwise he will exert too much energy into breathing instead of resting his lungs. So he is pretty much "out of it", though he can hear you. After saying our "goodnights" we all decided it was best to go home and get some rest.
Friday we arrived back early in the morning to find out what the plan was. The bronchoscopy test came back positive for PCP (not more cancer, thank God). So the plan is to let Mike rest and heal on the ventilator for a week. He knows when we are in his room (eyes open and responding with shaking head yes/no). But we really don't want to overstimulate him, because he tends to fight the machine instead of letting it breathe for him.
This morning we arrived and the nurses said that Mike had another restful night! At one point Angie was in his room, quietly talking to the nurse, and Mike opened up his eyes wanting to communicate. We asked him questions and found out that he wanted a mouth swab (little sponge dipped in ice water to wipe out his mouth). He used the mouth swab himself, and wanted another. Then he made the motion that he wanted to write something down. He knew he couldn't talk because of the tube in his throat. We handed him paper and a marker and he wrote "what floor". He wanted to know what floor he was on and we explained everything to him. It's good to see his personality and alertness. But rest is what he needs most right now. He's a strong, young guy who will bounce back in no time! Just another "bump in the road".
Our plan is to keep you updated throughout the week, as best we can. We know Mike loves your comments, so keep them coming, please! We know it will mean a lot to him when he gets back on here and reads them!
Talk to you soon!
Last Friday morning (April 16) Mike felt short of breath and spiked a small fever. His dad took him into the oncologist office and they checked his oxygen level while he was walking in. It was somewhat low (in the 80's). Dr. Paloyan suspected that Mike could possibly have a rare pneumonia called pneumocystis (PCP). So Dr. Paloyan sent him immediately to get a chest scan at the hospital. The scan showed very small blood clot in his right lung. They admitted him and started him on blood thinners. Blood clots can form and break off in your leg due to inactivity. The blood thinners work to help dissolve the clot back into the blood stream.
Well...as the week progressed, Mike's breathing was still bothering him. They decided to put him on some extra oxygen. Nights were long, and he wasn't getting much rest. By Wednesday, the Dr's just weren't convinced that this tiny blood clot was causing this much breathing distress. Another one of Mike's Dr's brought up the PCP concern again. He said it is VERY common for cancer patients to get this type of pneumonia due to a weakened immune system and also from the high does of steroids. They started him on strong antibiotics to get a jump start on the infection (even though they weren't exactly sure it was that). They decided to do a bronchoscopy on Thursday morning (go into the lung with a scope and squirt some fluid, suck it back up, and culture it). The cause of this breathing distress could be due to a list of things: infection, PC pneumonia, or tumor. After the procedure, Mike was moved back up to his room to sleep off the sedation. He had a little bit of lunch and continued to rest while we waited for the test results.
Later that evening, Angie felt Mike and he felt extremely hot. His breathing was still very fast and his temp was actually rising by the minute. You could tell that Mike was exerting too much energy into trying to breath instead of resting to heal. We cooled him down with an ice bath and fan. Within that hour (which seemed like forever) it was decided that in order for Mike to rest and heal, it would be best to intubate him (put him onto a ventilator). Well, being on a ventilator requires you to be in ICU.
So...we made the move to the ICU late that evening. They got Mike very comfortable with sedation and pain medicine. We got to go in his room ( a couple at a time) to talk to him and give him kisses. They want him to be very sedated to rest and heal, otherwise he will exert too much energy into breathing instead of resting his lungs. So he is pretty much "out of it", though he can hear you. After saying our "goodnights" we all decided it was best to go home and get some rest.
Friday we arrived back early in the morning to find out what the plan was. The bronchoscopy test came back positive for PCP (not more cancer, thank God). So the plan is to let Mike rest and heal on the ventilator for a week. He knows when we are in his room (eyes open and responding with shaking head yes/no). But we really don't want to overstimulate him, because he tends to fight the machine instead of letting it breathe for him.
This morning we arrived and the nurses said that Mike had another restful night! At one point Angie was in his room, quietly talking to the nurse, and Mike opened up his eyes wanting to communicate. We asked him questions and found out that he wanted a mouth swab (little sponge dipped in ice water to wipe out his mouth). He used the mouth swab himself, and wanted another. Then he made the motion that he wanted to write something down. He knew he couldn't talk because of the tube in his throat. We handed him paper and a marker and he wrote "what floor". He wanted to know what floor he was on and we explained everything to him. It's good to see his personality and alertness. But rest is what he needs most right now. He's a strong, young guy who will bounce back in no time! Just another "bump in the road".
Our plan is to keep you updated throughout the week, as best we can. We know Mike loves your comments, so keep them coming, please! We know it will mean a lot to him when he gets back on here and reads them!
Talk to you soon!
Wednesday, April 14, 2010
focus now
I am not making this up, but a side effect of the treatments I am enduring right now is lack of focus or lack of the ability to dedicate attention to certain tasks, such as reading, writing etc. I have found this to be so true. It all comes back to fatigue and exhaustion. My Aunt Ann, who was on same main treatments I am on expirienced the same, which was reassuring. Its always nice to know that, although everyone is diffeerent, I am not alone in this. I was a bit scatter brained to begin with. I was always writing myself notes on scratch paper, but I am now more than ever, and hardly ever seem to get anything I write down done.
So anyway, thats my excuse for lack of blog postings and such. Please do not take it personal. Keep the messages and support coming.
These blogs, for whatever reason, end up being about medications and the battle with those that I am facing. Unfortunatly, that has become my life recently
The ongoing battle for balance continues. I feel its the one constant that will remain through out this fight. I think I mentioned it before. Daily its as though I wake up and evaluate the situation, usually with the same response of "now... what the hell is this thats acting up?" The balancing comes into place with medications ofcourse. Too many of these cause weakness, but not enough and there is pain... you learn the difference real soon. The same goes for other drugs, with opposite effects. Also, its time that I wean off of some and move onto others, and the transitions are never smooth it seems.
There is sooo much technical jargin that goes with all this medication, its nearly a fulltime job staying on top of it all. A new drug was introduced today to help restore bone integrity and steriods were reduced again, to help with same deal. We have paper work, charts we make to keep track of it all, I still am confused. I had chemo again today. Thats a bitter sweet moment. I know it will hand me a handfull of struggle, but relief seems to come from it as well, so thats a good thing.
Can not thank my dad, ol TK, enough. Its been a tough week as I have had some tough bouts with pain and weekness, and we, should I say, he, managed to get alot down for me, and with me. Ofcourse, Stacy... I would have no idea where I would be without her here for me. Everyone's support comes in and fills in any loose seams and voids here and their, making it a bit easier.
I think I need to get off of here and onto to something more like pudding, maybe a milkshake? These are my latest kicks. Oatmeal too. I have instants, for the quick fix, or the old fashioned hand made larger original versions. Its acutally just like my pain meds, I have the original long lasting, good stuff, or the fast acting "instant reliefs".... I think soo... pudding it is.
I will try to see if I can keep up on this thing a bit better than I have. Anyone know where the Cubs have been this year? 4-4 aint horrible, but come on.... I still have hope... we'll see. Go Tigers!
So anyway, thats my excuse for lack of blog postings and such. Please do not take it personal. Keep the messages and support coming.
These blogs, for whatever reason, end up being about medications and the battle with those that I am facing. Unfortunatly, that has become my life recently
The ongoing battle for balance continues. I feel its the one constant that will remain through out this fight. I think I mentioned it before. Daily its as though I wake up and evaluate the situation, usually with the same response of "now... what the hell is this thats acting up?" The balancing comes into place with medications ofcourse. Too many of these cause weakness, but not enough and there is pain... you learn the difference real soon. The same goes for other drugs, with opposite effects. Also, its time that I wean off of some and move onto others, and the transitions are never smooth it seems.
There is sooo much technical jargin that goes with all this medication, its nearly a fulltime job staying on top of it all. A new drug was introduced today to help restore bone integrity and steriods were reduced again, to help with same deal. We have paper work, charts we make to keep track of it all, I still am confused. I had chemo again today. Thats a bitter sweet moment. I know it will hand me a handfull of struggle, but relief seems to come from it as well, so thats a good thing.
Can not thank my dad, ol TK, enough. Its been a tough week as I have had some tough bouts with pain and weekness, and we, should I say, he, managed to get alot down for me, and with me. Ofcourse, Stacy... I would have no idea where I would be without her here for me. Everyone's support comes in and fills in any loose seams and voids here and their, making it a bit easier.
I think I need to get off of here and onto to something more like pudding, maybe a milkshake? These are my latest kicks. Oatmeal too. I have instants, for the quick fix, or the old fashioned hand made larger original versions. Its acutally just like my pain meds, I have the original long lasting, good stuff, or the fast acting "instant reliefs".... I think soo... pudding it is.
I will try to see if I can keep up on this thing a bit better than I have. Anyone know where the Cubs have been this year? 4-4 aint horrible, but come on.... I still have hope... we'll see. Go Tigers!
Sunday, April 11, 2010
TGIF
Last week through me a bit of a curve as far as pain goes. By weeks end, it was to the point that Dr. Paloyan ordered some blood work, hooked me up to some nutrients via IV... and when was all said and done, ordered a new set of MRI's. Due to the fact that my legs where quite weak, it was thought to be best to do the MRI's as inpatient, therefore I was admitted to the hospital friday afternoon, overnight until saturday afternoon.The MRI's were ordered to rule out any spinal cord compression, causing the recent pain and leg issues. Good news, was that there is no issues with the spinal cord. They have boiled the weakness and pain down once again to medications and their side effects. We are working on that as well. There is sooo much going on, between the medications and treatments its hard telling what causes what. I could bore you with the details but I wont. We have also started physical therapy at home, and will start an out patient therapy program as well.
Mean while.... this past week Grandpa Bill was in a battle of his own. Same time I was dealing with my issues, he was battling an infection, the same one he was a few weeks back. It flared up again and landed him back in the hospital. Also just so happened friday was his birthday as well, an I wouldnt miss that party for anything! We had rooms right next to each other, although, visiting was not much of an option with our conditions. Even more ironic, is the procedure he had to have was on the other end of the hospital, main floor, right next to where I had mine, at the same time. Its just unfortunate tha tthe circumstances with the infection and such, prohibited much contact between all of us. He was in "isolation"... which we had to honor in hopes of getting him better and preventing my from getting ill. We snuck this pic at the end of our stay.
Mean while.... this past week Grandpa Bill was in a battle of his own. Same time I was dealing with my issues, he was battling an infection, the same one he was a few weeks back. It flared up again and landed him back in the hospital. Also just so happened friday was his birthday as well, an I wouldnt miss that party for anything! We had rooms right next to each other, although, visiting was not much of an option with our conditions. Even more ironic, is the procedure he had to have was on the other end of the hospital, main floor, right next to where I had mine, at the same time. Its just unfortunate tha tthe circumstances with the infection and such, prohibited much contact between all of us. He was in "isolation"... which we had to honor in hopes of getting him better and preventing my from getting ill. We snuck this pic at the end of our stay.
Its been a bit of a mental struggle as of lately, keeping up and up. It really is no different today than it was fighting this 2 weeks ago. Everyday offers a different challenge than the day before, bit its nothing that cant be over came. Its simply something that I just need to find a balance of and take it on. Its hard not being able to do the simple things in life. I guess its just one of those things where I need to swallow my pride and get admit that I may need help, or assistance, as humbling as that may be. Keeping focused on things has been the biggest challange as of lately, and my Aunt Ann could relate, saying the same thing. Simply reading magazines or writing these blogs take alot of focus that I just dont seem to have some times. BARE WITH ME. They call it "Chemo- Brain".... My Aunt Ann, having been through this before, lent me words of advice saying chemo is not going kill me, and it wont. I just need to accept that for the next few weeks, months, I wont be able to do the things I want to, or always have with out help, and thats ok. Fortunatly, I have people there that are willing to help. Its hard for me to take a step back, and let others do thing especially with weather the way it is right now. Its gorgeous out, but we will get through this. There is no other option.
Keep the positives coming...I love and appreciate the support. It helps more than I can express.
Time for me to do the exercises... post away, and I will try to keep up to date.
Wednesday, April 7, 2010
UPdate
Just a breif update. Been working on the pain management and think we may have that in our grasps. All and all its been tolerable, and I am able to get through the day without too much trouble. Each day I seem to figure out a new trick to managing the day. The radiation, chemotherapy and medication all seem to be having a positive effect just upon phyiscal examinations and such. The ablation procedure perfromed by Dr. Jordan a few weeks back seemed to have a very good effective. It relieved pain in the area and through out the left leg. The procedure was done in the left Iliac wing... (left lower back/hip area). At that time of the ablation I guess they took a biopsy, which resulted in showing no active cancer cells where those particular lesions were. Whatever that means, its gotta be better than the opposite. Ofcourse this is just for that area, and their are plenty of other areas through out my body that are active, but none the less, thats good news, and the fact that the ablation was pain relieving, is reassuring. In a few weeks I will determine weather or not to procede with some more ablation, after we go through another set of MRI's.
Thats about it for now. More chemo next week and just pluggin away until then. The side effects are a bit more noticeable but like I have said before, its all part of it, ya gotta take the good with the bad.
Thanks to all again and again for all that you have done for us. The food, the visists, messages, etc...
On a side note, please keep my Grandpa in your thoughts and prayers as well, he is going through his own battle and the treatments seem to have a bit more of a toll on him as of lately. Love that guy.
Thats about it for now. More chemo next week and just pluggin away until then. The side effects are a bit more noticeable but like I have said before, its all part of it, ya gotta take the good with the bad.
Thanks to all again and again for all that you have done for us. The food, the visists, messages, etc...
On a side note, please keep my Grandpa in your thoughts and prayers as well, he is going through his own battle and the treatments seem to have a bit more of a toll on him as of lately. Love that guy.
Monday, April 5, 2010
One Thing
Through all the treatments, its very common to loose a sense of taste, or difference in taste. Everything ends up tasting the same. Everything tastes salty to me.... EXCEPT MILKSHAKES. A good old chocalate mileshake still tastes like a good old chocalate milkshake, and thank god for that. Being spoiled like I have been as of latley, Stacy just served me one that was about a half gallon, and I now find myself trying to stay awake for the second half of this suprisingly good basketball game.
Sunday, April 4, 2010
-V.A.F.-
Stacy poured a cup of coffee for me as I logged on the wireless network, watching CBS's Sunday morning, a ritual. I was going to get on here and post some "hot rod" related pics and info, something a little lighter than the typical topics of discussion, and a bit more true to my heart and soul. Believe it or not, there is ALOT more to my life than doctors, medication and cancer. I have hundreds of photos, info, and articles of Vendetta Auto Fab's work and products, both finished and in progress. For some reason, I can not access any of these files on the cd's they are stored on. I just got done praising how lucky I have been with the current laptop I have. Perhaps that luck has run dry.
I will have to "resolve" this. Give me some time.
Mean while, if you are truly interested, there is always some good eye candy in the shop for the auto enthusiasists. Alot of good conversation if you just like to "bench race".... stop on by, email, call .... send a letter. See thats the beauty of hot rodders and my shop, we start on a customer / shop terms, and have become great friends. We can see that the passion is true and genuine, and its easier that way. Young and old, its great, and probably the greater reward. There is alot to learn, and it doesnt take long to be humbled by the fascinating stories many have to share. See, hot rods are not a material thing, they are more an attitude or lifestyle. Once you grasp that concept the colors of the hobby become much more vivid. Some of the greatest people I know.
Speaking of which, gotta go meet Dave at the shop so he can drop off a flathead V8 engine for an upcoming project.
I will have to "resolve" this. Give me some time.
Mean while, if you are truly interested, there is always some good eye candy in the shop for the auto enthusiasists. Alot of good conversation if you just like to "bench race".... stop on by, email, call .... send a letter. See thats the beauty of hot rodders and my shop, we start on a customer / shop terms, and have become great friends. We can see that the passion is true and genuine, and its easier that way. Young and old, its great, and probably the greater reward. There is alot to learn, and it doesnt take long to be humbled by the fascinating stories many have to share. See, hot rods are not a material thing, they are more an attitude or lifestyle. Once you grasp that concept the colors of the hobby become much more vivid. Some of the greatest people I know.
Speaking of which, gotta go meet Dave at the shop so he can drop off a flathead V8 engine for an upcoming project.
Saturday, April 3, 2010
- go sparty-
Its been a couple days since last post I guess. I have been enjoying the great weather. Pain management has been a bit of a challenge but I think we are making progress. The entire process is really overwhelming. I wish there was a point that you get to where you know thats the quote "turning point", where you knew from there on it would get better... but the truth is, you just dont. I am confident though we are deffinatly making progress. Dr. Paloyan has provided such great care for me and my situation, words cannot express the gratitude I have him and his staff. Lucky to have the people in my life that I have. Thats for sure.
Once again, medications have been altered, alot... its a chemistry expiriment in my bloodstream, but I cant complain. Feeling comfortable as of latetly, and doing all I can to get into a routine. Some precautions I have to take into account with white blood cell counts, chemo and such, but all and all, I can't complain. Long strory short... if your sick, stay away, ha. I cant express how much I appreciate the support everyone has provided from top to bottom. Everyone has reached out to help and alot of levels and it really does help, not only me, but my family. From messages of hope on here to, house hold chores or meals getting cooked...etc. I never knew some of my punk friends could cook or step up and be so hospitable.... I am impressed.
I am really looking forward to today and tonight. Going to enjoy some Final 4 basketball with Lilli and Stacy. My Spartan's shirt been on since first thing this morning. All 4 teams deserve to be there, and it should be a great weekend of basketball.
Cubs opener Monday!
There's a gearhead side to me as well, ha... just a little. Those who share that interest may be interested to know that I have a few things up my sleeve in that realm as well. The shop is full of neat projects, large and small. I am blessed with understanding customers. I have plans for some idle parts, that are not getting put to use. Those parts will find home in a new project... exciting and low key. I will keep ya posted. Vendetta Auto Fab will survive, and like its owner, will be better for it.
Once again, medications have been altered, alot... its a chemistry expiriment in my bloodstream, but I cant complain. Feeling comfortable as of latetly, and doing all I can to get into a routine. Some precautions I have to take into account with white blood cell counts, chemo and such, but all and all, I can't complain. Long strory short... if your sick, stay away, ha. I cant express how much I appreciate the support everyone has provided from top to bottom. Everyone has reached out to help and alot of levels and it really does help, not only me, but my family. From messages of hope on here to, house hold chores or meals getting cooked...etc. I never knew some of my punk friends could cook or step up and be so hospitable.... I am impressed.
I am really looking forward to today and tonight. Going to enjoy some Final 4 basketball with Lilli and Stacy. My Spartan's shirt been on since first thing this morning. All 4 teams deserve to be there, and it should be a great weekend of basketball.
Cubs opener Monday!
There's a gearhead side to me as well, ha... just a little. Those who share that interest may be interested to know that I have a few things up my sleeve in that realm as well. The shop is full of neat projects, large and small. I am blessed with understanding customers. I have plans for some idle parts, that are not getting put to use. Those parts will find home in a new project... exciting and low key. I will keep ya posted. Vendetta Auto Fab will survive, and like its owner, will be better for it.
Thursday, April 1, 2010
OUT
Felt great to get up, out and about this morning. Although first thing I was quite sore, I talked Dad into bringing 3 dozen donuts over, and we delivered them to the guys at Tigmaster. Getting out and about in any capacity sure beats sitting in the Lay-Z-boy all day. I am not sure how much I can do, as I tire real easy, but I cant begin to tell ya how good that feels to get out and socialized a bit... keepin active. It has been stated before; a balancing act is definatly needed. Anyone that knows me will tell you that sitting idle is not one of my strong points. I need to simply need a bit more pain med, more activity, more dedicated rest and less sitting around. My mental state doesnt allow me to simply sit.
I simply gotta get back into the mindset that I am in control, and not the cancer. I found myself dangerously close to the point where I was just going to let the disease stear the ship, and allow it to take me where it so desired... NOT HAPPENING. I didnt get into this game that way, and I sure as hell am not going to allow it to fall into that format. Dont get me wrong, I respect my opponenent, but am in no way, shape or form am I intimidated by it. It has thrown some things at me as of lately that are humbling and provided a real reality check, but so be it, I am still here and will be tomorrow.
Listen... I cannot and will not let the cancer run my life, period. I said that Feb 4th, and will continue to remind myself of that each day! Thats as plain english as I can put it. I have too much to live for to allow otherwise.
All and all... I think my ol dog LOU has the right idea for right now, a little break, then maybe back at it.
I simply gotta get back into the mindset that I am in control, and not the cancer. I found myself dangerously close to the point where I was just going to let the disease stear the ship, and allow it to take me where it so desired... NOT HAPPENING. I didnt get into this game that way, and I sure as hell am not going to allow it to fall into that format. Dont get me wrong, I respect my opponenent, but am in no way, shape or form am I intimidated by it. It has thrown some things at me as of lately that are humbling and provided a real reality check, but so be it, I am still here and will be tomorrow.
Listen... I cannot and will not let the cancer run my life, period. I said that Feb 4th, and will continue to remind myself of that each day! Thats as plain english as I can put it. I have too much to live for to allow otherwise.
All and all... I think my ol dog LOU has the right idea for right now, a little break, then maybe back at it.
Wednesday, March 31, 2010
-balance-
Not sure if I mentioned it or not, but Dr. Paloyan adjusted some of my pain meds again yesterday, and introduced a patch, that will keep me on a constat dose of a certain medication. We shall see how this works. The daily Leukine shots that I get to maintain my white blood cell count were stopped today, as he thinks the shots may be stimulating some activity in my bones, and the cause of some of my pain. We'll see. We knew getting into this that there is going to be alot of trial and error type work.
All and all its been a long day, quite tiring, and its time to call it a night. I am hopeful that tomorrow will be better and will show some improvment. I will try to get on here and keep you posted.
Good night!
I went today for another chemo treatment. Stacy says "the people want pictures"... well then who am I to deny the people of what they want, even though I am not very photogenic. The red syringe is the drug that I mention time and time before, its quite potent. Spent alot of time in and out of sleep today.
Good night!
Tuesday, March 30, 2010
- RAMDOM -
Just a random post on here, babbling on and on... dont have much in general to say, just feel like I should say something... TK is chasing prescriptions for me.... This is like I said, just a bunch of rambling, babbling etc. Bare with me until he gets back. There is no structure, ryhme or reason to this post... much like this battle I am fighting.
Just found my lost chap stick in my pocket... better now than later on in the dryer, just ask my wife. I dont know if there is enough inspiration with this discovery write an entire blog entry, but I guess I can try. I have wrote on and on about how I wanted to establish a "routine" once the chemotherapy began. Well here we are, 3 weeks into the routine, and its a little less than pulitzer prize winning material to write about. I guess I set my expectations a bit too high as to what I would be able to do. I lost touch with the reality that my circumstance is unique in that the cancer involving the spine and bones causes pain and prevents me from doing alot of the things I once planned.
Wish I had something revolutionary to write about, and I just may deep down inside, but I sure dont seem to be able to put the text to paper right this second. As of right now, just kinda letting time run its course, the best I can.
Alot of the same old, same old about here. Nothing new as of lately, nothing really to write about. Things are up and down, both physically and emotionally. Nothing out of the ordinary I dont think.... but then again, it comes back to what is "normal". Since day one of this blog, or even prior to this forum... whats normal? I am a 29 year old with Renal Cell Cancer that has metastisized to my spine. Nothing in that statement is normal or makes sence.
I have been busy trying to juggle pain management and the daily life as of lately, and thats been enough of a chore to keep me occupied. Dont really want to get on here time after time and whine about what hurts and what doesnt. The fact is that I tuly am sick, things are going to be uncomfortable, and wont always go my way. As of lately thats about it. Its been a roller coaster for certain, although, fortunately I have not expirienced one extreme or the other I dont think. Its hard for me to complain, cause I can imagine that it could be worse, I am sure.
Had some great support in the form of company, great meals and goodies to eat.... probably more than I should have, but oh well. As I have said before I dont know what I would do with out everyone.
Tomorrow there will be more chemo, and hopefully more progress shown in that department. Its easy to get overwhelmed with info on the internet and through publications sprawled through out the Dr's offices, and really play out alot of scenarios good and bad. My mind is dangerous when left to those devices, as there is just as much false and ill-informed resourses out there as there are benefitial... I try to differentiate the two, but its not always easy.
I am babbling on and on I'm sure, so I should probaby get on with my day.
My father and I have alot of hot rod building to do in our heads today. Throw the fact that I miss the guys at Tigmaster, miss that daily routine, and want to get back there with them. I miss my time in my shop, building and creating.
I know, I know, patients!.... just ready to get back to a normal sense of LIFE... Stacy, Lilli and myself... and of course ol LOU dog!
KEEP THE COMMENTS COMING, the support is amazing and helps alot! Gives me something to write about.... and I need that now!
TK just got here with the new meds...a slight adjustment to what I had, actually just an addition to what I was on, and they damn near kill ya with side effects dont they. I guess thats what they have to do.
Just found my lost chap stick in my pocket... better now than later on in the dryer, just ask my wife. I dont know if there is enough inspiration with this discovery write an entire blog entry, but I guess I can try. I have wrote on and on about how I wanted to establish a "routine" once the chemotherapy began. Well here we are, 3 weeks into the routine, and its a little less than pulitzer prize winning material to write about. I guess I set my expectations a bit too high as to what I would be able to do. I lost touch with the reality that my circumstance is unique in that the cancer involving the spine and bones causes pain and prevents me from doing alot of the things I once planned.
Wish I had something revolutionary to write about, and I just may deep down inside, but I sure dont seem to be able to put the text to paper right this second. As of right now, just kinda letting time run its course, the best I can.
Alot of the same old, same old about here. Nothing new as of lately, nothing really to write about. Things are up and down, both physically and emotionally. Nothing out of the ordinary I dont think.... but then again, it comes back to what is "normal". Since day one of this blog, or even prior to this forum... whats normal? I am a 29 year old with Renal Cell Cancer that has metastisized to my spine. Nothing in that statement is normal or makes sence.
I have been busy trying to juggle pain management and the daily life as of lately, and thats been enough of a chore to keep me occupied. Dont really want to get on here time after time and whine about what hurts and what doesnt. The fact is that I tuly am sick, things are going to be uncomfortable, and wont always go my way. As of lately thats about it. Its been a roller coaster for certain, although, fortunately I have not expirienced one extreme or the other I dont think. Its hard for me to complain, cause I can imagine that it could be worse, I am sure.
Had some great support in the form of company, great meals and goodies to eat.... probably more than I should have, but oh well. As I have said before I dont know what I would do with out everyone.
Tomorrow there will be more chemo, and hopefully more progress shown in that department. Its easy to get overwhelmed with info on the internet and through publications sprawled through out the Dr's offices, and really play out alot of scenarios good and bad. My mind is dangerous when left to those devices, as there is just as much false and ill-informed resourses out there as there are benefitial... I try to differentiate the two, but its not always easy.
I am babbling on and on I'm sure, so I should probaby get on with my day.
My father and I have alot of hot rod building to do in our heads today. Throw the fact that I miss the guys at Tigmaster, miss that daily routine, and want to get back there with them. I miss my time in my shop, building and creating.
I know, I know, patients!.... just ready to get back to a normal sense of LIFE... Stacy, Lilli and myself... and of course ol LOU dog!
KEEP THE COMMENTS COMING, the support is amazing and helps alot! Gives me something to write about.... and I need that now!
TK just got here with the new meds...a slight adjustment to what I had, actually just an addition to what I was on, and they damn near kill ya with side effects dont they. I guess thats what they have to do.
Sunday, March 28, 2010
- compromise -
LEMONS
Simple tasks in life that go overlooked. Lifes little chores that are pose a challenge. Doubts start to settle in, as to weather we are on the right track or not. Things I could do before that I can't so easily now. I begin to question it all, weather we are overlooking the obvious. I start thinking we are going 2 steps forward and 5 steps back.... Everything I am supposed to do to improve my position in this battle, seems to have some side effect or cause me more hassle... its all about compromise... you take the good with the bad...
LEMONADE!!!
It is what what you make of it, and knowing what you can and cannot change...
The one thing I have control over is my attitude. The side effects of the drugs and treatments have been showing their presense, but thats to be expected. GO SPARTANS!!!! We have a good, no.... a GREAT afternoon of DUKE and MSU games, and a little short track NASCAR racing mixed in there. Take care of yourselves!
(It would be easy to put the faux and cheezy legal disclaimers here like ...."for the record, no bathroom cushions were harmed in the photos here, they were simply reallocated to a new position where they could better serve a purpose"... after all, yes that is a toilet seat pad that didnt work out as planned, but you know us Kacynski's... waste not)
Thursday, March 25, 2010
Love, health & happiness, just to name a few ...
I dont know where too begin with this today... The medication list has me a bit overwhelmed, but thats to be understood, as there are alot of them that I take. Its a little tough trying to maintain the balance at home that I had in the hospital. The reason I was admitted on Friday was to get the pain under control and by Tuesday it was, therefore, I came home home. They litterally tripled my pain medication doseages. Since I came home I have had it undercontrol, except for a few instances. It gets frustrating, but after some investigative work, I have determined that I need to stop being a "cowboy" as I was labeled early on. I tend to take the minimal amount of medication I can to get by through out my day, disregarding my comfort, and it really should be the opposite. I should be comfortable in this fight, and pain shouldnt be an issue really. I know I will be sore, but sore and in pain are two different things. Sore lets me know why I am here, pain makes me wish I wasnt.
I need to just slow down. Any sence of normalcy and I go at life as it was 6 months ago, when the sky was the limit, or so I thought. I feel great getting out of the hospital, and come home going at a pace thats about 150% faster than I should. I need to just take my time. This entire deal as brought my life back into check and makes me realize whats truly important. As cliche' as that sounds, its oh so true. I cant speak for anyone but myself, but I know that I took alot of life for granted, failing to appreciate value of many simple things in life. Love, health and happiness just to name a few!
More appointments and shots today. I have another chemo next week, which I look forward to. I really do. The side effects are getting a bit more intense each time, but I welcome the positive effects that the treatments bring. Everything tastes the same. Its hard to explain, but I can differentiate between textures and consistancy, but the flavor is all generically the same. Makes it easy on the chef, ha. I am pretty confident that the remainder of my hair will be gone after the next treatment. Fatigue is something I still battle, weather its a physical weekness of my muscles, or just drowsiness. Its no surprise with the cocktail they have brewing in my veins.
All and all, we are getting better, just gotta keep pluggin away. I gotta remember that this is just a chapter in the book of life rather than the entire story. Simple as that. I cant worry about things that I cant change. I can only ask for the power to change the things I can...and hopefully I will have the wisdom to know the difference between the two.
I have to thank everyone again for all they have done, especially while in hospital. Its speaks volumes to the potential of the human spirit when the intentions are good. I know that sounds really "deep", but there is no other way to say it.... just the messages, posts, emails, cards or packages... they all make it that much easier in one way or another. Although its not enough to just say thank you, thats about all I can say or do. Its amazing.
I need to just slow down. Any sence of normalcy and I go at life as it was 6 months ago, when the sky was the limit, or so I thought. I feel great getting out of the hospital, and come home going at a pace thats about 150% faster than I should. I need to just take my time. This entire deal as brought my life back into check and makes me realize whats truly important. As cliche' as that sounds, its oh so true. I cant speak for anyone but myself, but I know that I took alot of life for granted, failing to appreciate value of many simple things in life. Love, health and happiness just to name a few!
More appointments and shots today. I have another chemo next week, which I look forward to. I really do. The side effects are getting a bit more intense each time, but I welcome the positive effects that the treatments bring. Everything tastes the same. Its hard to explain, but I can differentiate between textures and consistancy, but the flavor is all generically the same. Makes it easy on the chef, ha. I am pretty confident that the remainder of my hair will be gone after the next treatment. Fatigue is something I still battle, weather its a physical weekness of my muscles, or just drowsiness. Its no surprise with the cocktail they have brewing in my veins.
All and all, we are getting better, just gotta keep pluggin away. I gotta remember that this is just a chapter in the book of life rather than the entire story. Simple as that. I cant worry about things that I cant change. I can only ask for the power to change the things I can...and hopefully I will have the wisdom to know the difference between the two.
I have to thank everyone again for all they have done, especially while in hospital. Its speaks volumes to the potential of the human spirit when the intentions are good. I know that sounds really "deep", but there is no other way to say it.... just the messages, posts, emails, cards or packages... they all make it that much easier in one way or another. Although its not enough to just say thank you, thats about all I can say or do. Its amazing.
Wednesday, March 24, 2010
- home sweet home-
Hard to explain the sense of comfort gathered from the familiar sound and scent of HOME SWEET HOME (almost sounds french by the way)...
Came home yesterday, feeling better. Back to the routine today, shots, appointments etc. TK is here to accept driving responsibilities for the day. I will write more in the blog later, because as of right now I see the S.O.S flares going off and signs of distress through the air across the living room as he sits on the couch trying to program his new flip phone. I think I need to intervene before someone gets hurt. More to come...
Its 8 a.m....Def LePPard is playing on Pandora, fresh pot of coffee, a new FLIP phone is involved, and some sunshine to start the day... life aint all bad ya know.
GO BEE's... the old Bridgman Bee's stepping it up and playing on the state level. Good to see! I dont think I can make it up there, but I sure wish I could.
Came home yesterday, feeling better. Back to the routine today, shots, appointments etc. TK is here to accept driving responsibilities for the day. I will write more in the blog later, because as of right now I see the S.O.S flares going off and signs of distress through the air across the living room as he sits on the couch trying to program his new flip phone. I think I need to intervene before someone gets hurt. More to come...
Its 8 a.m....Def LePPard is playing on Pandora, fresh pot of coffee, a new FLIP phone is involved, and some sunshine to start the day... life aint all bad ya know.
GO BEE's... the old Bridgman Bee's stepping it up and playing on the state level. Good to see! I dont think I can make it up there, but I sure wish I could.
Tuesday, March 23, 2010
manic monday
I sit here drinking one of the imfamous "coffee shop milkshakes", nearly 24 hours after I was to begin the fasting procress for the procedure I endured today. Not eatting or drinking anything in this terribly dry enviroment for 18 hours was probably the toughest part of it all. Its hard to explain how dry it is in this hospital, and even tougher to explain how nice this milkshake is right now.
As for todays "procedure"... it went well. After a brief consultation with Dr. Jordan just prior to going under anesthesia, he determined that to do any work in the sacrum area would involve too much risk. There are some serious nerve endings in the sacrum that would be at risk of being damaged with a kyphoplasty. Damage there could result in paralyzation and worse, and those are results that are always frowned up. Dr. Jordan was very honest and open and said that he didnt feel comfortable doing anything in that area, but seen a real benefit could be gained by doing some Radiofrequency Ablation (RFA) in my left Iliac wing. There are some lesions in this area, causing alot of pain. RFA is a process where they use a long probe to go into the back or problem area and the use pin point localized radiation to zap or kill the tumors This process was used today in the left Iliac wing area, which is just to the side of the sacrum. This will hopefully relieve some of the lower back and left left pain. I am confident it will.
Just finished a lap around the 4th floor here, before I sat down to enjoy the milkshake and write this. Thats a vast improvement, considering Friday I couldnt even walk. I was also able to do a handfull of the daily routine most take for granted. These are things that I couldnt do, but after some medication adjustments, and this procdure... I think we are back on track. Not to mention, the chemotherapy... I am certain that is having a positive effect already. Their is a possibility that more RFA will take place in the future, depending on the results of today's work.
The plan is to get out of here tomorrow. The stay has been a great success, and well needed. The medication list was altered greatly, but for the better. The RFA procedure really has me excited to see where I will be in a few days after it has had time to heal up.
I am exhausted and need to call it a night. I am probably just babbling anyway. Been a busy couple days. I wasnt gonna even post, but the people want a posting... so, being a man of the people, for the people.... I give the people what they want. People wanted pics too.... so here you go... I look like a zombie, but feel pretty good. Please excuse the cell phone pic and partial head of hair. Its about 70% out. I am staring at something on the TV when Stacy snapped this pic. By the way.... GO SPARTANs ..... gotta love march madness.
As for todays "procedure"... it went well. After a brief consultation with Dr. Jordan just prior to going under anesthesia, he determined that to do any work in the sacrum area would involve too much risk. There are some serious nerve endings in the sacrum that would be at risk of being damaged with a kyphoplasty. Damage there could result in paralyzation and worse, and those are results that are always frowned up. Dr. Jordan was very honest and open and said that he didnt feel comfortable doing anything in that area, but seen a real benefit could be gained by doing some Radiofrequency Ablation (RFA) in my left Iliac wing. There are some lesions in this area, causing alot of pain. RFA is a process where they use a long probe to go into the back or problem area and the use pin point localized radiation to zap or kill the tumors This process was used today in the left Iliac wing area, which is just to the side of the sacrum. This will hopefully relieve some of the lower back and left left pain. I am confident it will.
Just finished a lap around the 4th floor here, before I sat down to enjoy the milkshake and write this. Thats a vast improvement, considering Friday I couldnt even walk. I was also able to do a handfull of the daily routine most take for granted. These are things that I couldnt do, but after some medication adjustments, and this procdure... I think we are back on track. Not to mention, the chemotherapy... I am certain that is having a positive effect already. Their is a possibility that more RFA will take place in the future, depending on the results of today's work.
The plan is to get out of here tomorrow. The stay has been a great success, and well needed. The medication list was altered greatly, but for the better. The RFA procedure really has me excited to see where I will be in a few days after it has had time to heal up.
I am exhausted and need to call it a night. I am probably just babbling anyway. Been a busy couple days. I wasnt gonna even post, but the people want a posting... so, being a man of the people, for the people.... I give the people what they want. People wanted pics too.... so here you go... I look like a zombie, but feel pretty good. Please excuse the cell phone pic and partial head of hair. Its about 70% out. I am staring at something on the TV when Stacy snapped this pic. By the way.... GO SPARTANs ..... gotta love march madness.
Sunday, March 21, 2010
Part 1 of ?
Last updated this Friday, bright and early as can be read below. That post expressed where I was Friday morning. Only thing on my plate for Friday was to make it to the office for a Luekin shot. For now, I am to get a daily shot through out the first parts of the chemotherapy, just to keep the white blood cell counts in check and immune system up to snuff. So.... fast forward a bit, and I am in my extended legnth mid morning routine, and as explained in Friday's post, coping with a bit more pain. TK picks me up and we make our way to Dr. Paloyan's office for the needed shot. I spend the 15 min car ride picking my hair off the shoulders of my sweatshirt, wondering why I even have a sweatshirt on, as its nearly 60 degrees out. My frustration is increasing from the amount of pain as well as being too warm for the clothes I have dressed in not to mention the feeling of my sheding hair down my sweaty back and neck. Finally we arrive in drop off turnaround, I bail out of the PT cruiser and am greated with a strong scent of something electrical burning. This is the second time that TK and I have noticed this, thats not good. I can hardly get out of my own way... what the hell am I supposed to do if I need to get out of this car in an emergency? The scenario's race through my head at an alarming rate, and the results are all the same...
(side note... pandora is great, http://www.pandora.com/)
I made my way in for the shot. The nurses seems to notice a bit more struggle in my steps, it doesnt take long for the her to comment and I mention that something has to change, and that the past week has been tough, and I should probably get with Dr. Paloyan about increasing the medications I am on. Simultaneously, my Mom, after reading the emails in that I mentioned in Friday's post, calls Paloyan's office to see if while I was there for the shot, the pain issue could be addressed. About that time, the nurse comes back and mentions that she would like me to just hang tight for a bit, and she will talk with the doctor. 10 min later a decision is made to get me into the hospital for pain management. I honestly felt relieved and knew this was the best thing for me.
As of around 2pm Friday, I have been at Lakeland hospital, working with Dr. Stafford who has been in touch with Dr. Paloyan and I believe Dr. Jordan as well. Ironically, the gentleman that takes care of me in the infusion clinic, works here on the 4th floor one weekend a moth, and this is his weekend. So I am in good hands, hands that are familiar with my situation. Basically, we are trying to get a diet or regiment of medications that will allow me to lead a comfortable life... that new "normal" I mentioned a few times before. ALOT has changed since this current medication list was installed into my routine. I have been through radiation, started chemo, my body has changed alot, and the meds changed very little.
I think we have taken the right steps this weekend so far, and am confident that we will get this whipped, just a little hiccup. The pain friday was probably as bad as it has been at certain points, and today I am sitting here pretty content and looking forward to more great basketball on TV. Thats a whole other post in itself, go SPARTANS.
I touched based on it a bit last week, but there is a few procedures that they are considering or I should say will be doing Monday, in hopes of providing more pain relief. I will be here until Tuesday to recover from that.
As usual, when I get in here, we take over, ha. Alot of good company, good people, snacks, treats, etc. Its been great. I havnt had much of a chance to sit down and take a deep breath which I think I will now. I am actually here by myself for a bit while Stacy ran some errends. Alot has happened, changed or will be changing in the next week or so, I will try to write more tonight, but like I said, it gets crazy in this little room from time to time, and I dont know what I will be able to sneek into the schedule.
My hair is on its last leg, alot has fell out, more soon to come.
Its about lunch time, there are a few good stories I am leaving out, but time will only make em better! Thanks again everyone for all you have done and continue to do. I know one thing, its gotta be impossible for me to fail at anything with this much support behind me!
(side note... pandora is great, http://www.pandora.com/)
I made my way in for the shot. The nurses seems to notice a bit more struggle in my steps, it doesnt take long for the her to comment and I mention that something has to change, and that the past week has been tough, and I should probably get with Dr. Paloyan about increasing the medications I am on. Simultaneously, my Mom, after reading the emails in that I mentioned in Friday's post, calls Paloyan's office to see if while I was there for the shot, the pain issue could be addressed. About that time, the nurse comes back and mentions that she would like me to just hang tight for a bit, and she will talk with the doctor. 10 min later a decision is made to get me into the hospital for pain management. I honestly felt relieved and knew this was the best thing for me.
As of around 2pm Friday, I have been at Lakeland hospital, working with Dr. Stafford who has been in touch with Dr. Paloyan and I believe Dr. Jordan as well. Ironically, the gentleman that takes care of me in the infusion clinic, works here on the 4th floor one weekend a moth, and this is his weekend. So I am in good hands, hands that are familiar with my situation. Basically, we are trying to get a diet or regiment of medications that will allow me to lead a comfortable life... that new "normal" I mentioned a few times before. ALOT has changed since this current medication list was installed into my routine. I have been through radiation, started chemo, my body has changed alot, and the meds changed very little.
I think we have taken the right steps this weekend so far, and am confident that we will get this whipped, just a little hiccup. The pain friday was probably as bad as it has been at certain points, and today I am sitting here pretty content and looking forward to more great basketball on TV. Thats a whole other post in itself, go SPARTANS.
I touched based on it a bit last week, but there is a few procedures that they are considering or I should say will be doing Monday, in hopes of providing more pain relief. I will be here until Tuesday to recover from that.
As usual, when I get in here, we take over, ha. Alot of good company, good people, snacks, treats, etc. Its been great. I havnt had much of a chance to sit down and take a deep breath which I think I will now. I am actually here by myself for a bit while Stacy ran some errends. Alot has happened, changed or will be changing in the next week or so, I will try to write more tonight, but like I said, it gets crazy in this little room from time to time, and I dont know what I will be able to sneek into the schedule.
My hair is on its last leg, alot has fell out, more soon to come.
Its about lunch time, there are a few good stories I am leaving out, but time will only make em better! Thanks again everyone for all you have done and continue to do. I know one thing, its gotta be impossible for me to fail at anything with this much support behind me!
Friday, March 19, 2010
- suck it up and quit yer whining -
"Patients" seems to be the reacurring theme here. As I have stated before, thats not really one of my strong points. I am a guy who is used to instant results either good or bad, and so far this whole "fighting cancer" thing doesnt play along by my rules. It seems to have a mind of its own apparently, and doesnt really give a damn what I want. Although I am through with radiation for time being, and have began chemotherapy, I have not seen the pain relief I was hoping for, in fact, I may be in a bit more pain now than I was 4 weeks ago. This is hard for me to get my head around.
I woke up this morning about 4 am, which is the norm for me lately. Frustrated and upset by the pain, I fired off 3-4 emails to my mother, to "vent" a bit. She's good for that. I can lean on her in times like this, she knows how I am and takes it... being in her position in the medical field, she also knows people who can give me answers. The emails are random, just wanting to know details as to why, and why not. The internet provides really nothing, as far as reassurance, due to the fact that more than half the material on the web is 5-10 years old or older. This disease and its treatment options have so far advanced in that time, that reading dated material such as that is more of a hinder than a help.
Its hard for me to understand exactly whats going on, there are so many variables involved. What causes what, and how do you address the issue? What is normal??? I dont want to be a whiner, but should this be happening? What about this, and where did this come from? I thought this was all part of it? All questions that I deal with that the poor doctor's have to sort through.
Its been a wild ride for the past 6 weeks or so, since the end of January. Its not over yet. At the risk of sounding mundane, its been amazing to have the amount of support that received. It never fails, where ever I go, people mention that they read this, or that I am in their thoughts and prayers and that they are pulling for me. Young and old, friends and foe even, people you never would expect, express that they are with me in this fight. Thats incredible. Times like yesterday when I am sore and hurting, sitting in the parking garage in a wheel chair, feeling sorry for myself....waiting for my ride to pull around. I hear an old family friend approaching me say that he reads this blog daily and just knows that I am gonna pull through.... that means the world to me, and makes me realize that this wont kill me, it can only make me stronger.
Things could be worse, just look at the first round of my NCAA bracket.
I woke up this morning about 4 am, which is the norm for me lately. Frustrated and upset by the pain, I fired off 3-4 emails to my mother, to "vent" a bit. She's good for that. I can lean on her in times like this, she knows how I am and takes it... being in her position in the medical field, she also knows people who can give me answers. The emails are random, just wanting to know details as to why, and why not. The internet provides really nothing, as far as reassurance, due to the fact that more than half the material on the web is 5-10 years old or older. This disease and its treatment options have so far advanced in that time, that reading dated material such as that is more of a hinder than a help.
Its hard for me to understand exactly whats going on, there are so many variables involved. What causes what, and how do you address the issue? What is normal??? I dont want to be a whiner, but should this be happening? What about this, and where did this come from? I thought this was all part of it? All questions that I deal with that the poor doctor's have to sort through.
Its been a wild ride for the past 6 weeks or so, since the end of January. Its not over yet. At the risk of sounding mundane, its been amazing to have the amount of support that received. It never fails, where ever I go, people mention that they read this, or that I am in their thoughts and prayers and that they are pulling for me. Young and old, friends and foe even, people you never would expect, express that they are with me in this fight. Thats incredible. Times like yesterday when I am sore and hurting, sitting in the parking garage in a wheel chair, feeling sorry for myself....waiting for my ride to pull around. I hear an old family friend approaching me say that he reads this blog daily and just knows that I am gonna pull through.... that means the world to me, and makes me realize that this wont kill me, it can only make me stronger.
Things could be worse, just look at the first round of my NCAA bracket.
Wednesday, March 17, 2010
- juiced -
Grandpa Bill and I, all plumbed up this morning. Today was one of the days where our treatments landed on the same day. I have a feeling that place wont be the same by the time we are all said and done. As for treatment itself, that stuff they give me sure is potent, atleast for me. I am home now, and its time I get some sleep. The first few days after I recieve my treatments, I am quite tired. I will try to write more later tonight. Thanks again to everyone for all they do.
I have a consultation tomorrow with Dr. Jordan, concerning the Kyphoplasty procedure... so hopefully we can get rolling on that soon.
By the way, my hair is starting to fall out, wont be long now...
Sorry about the expressions on my face, I am not one for taking pictures... hate posing for photos, ist just not my gig...
I have a consultation tomorrow with Dr. Jordan, concerning the Kyphoplasty procedure... so hopefully we can get rolling on that soon.
By the way, my hair is starting to fall out, wont be long now...
Sorry about the expressions on my face, I am not one for taking pictures... hate posing for photos, ist just not my gig...
Monday, March 15, 2010
- 10pm snack -
Just a quick update. I recieved some good news tonight concerning my back. Just finished dinner (thanks Patty, it was fantastic), and the phone rings. It was Dr. Paloyan. We discussed some options about my back and the pain its been causing. Dr. Paloyan, Dr. Sikorski and a few others all agreed that I would be a good candidate for a procedure known as a Kyphoplasty. The major area of concern right now is in my very lower back or sacrum. The tumors there were hit with radiation and have maybe reduced some and are under control as far as we can tell, but the damage is done. There are multiple stress and compression fractures, causing quite a bit of pain and discomfort. The Kyphoplasty in short is an injectable bone cement that when done will provide a bit more integrity and strength in this area of my back and hopefully reduce the pain greatly. At this point its worth a shot and we have nothing to loose. That area of my back is the worse, there are other areas that may need attention down the road if this works out. I am suppose to hear from Dr. Jordan, who would be performing this procedure, any day now. So we shall..... you guessed it, wait and see, until then....
I'll turn it over to the 3rd shift!
^define^
I am not sure I am ready to recieve what I wanted. If you read the past few posts that I have published on this blog, I have made the comment that I was ready to get into a "routine". I have made that comment in person to people who asked how I was doing. I convinced myself that I was tired of not knowing, tired of waiting for answers and ready to get on with getting better. To an extent, I am. I want nothing more than to just wake up and get back to work, to that daily routine. I am not ready for this daily routine though. The routine of being a cancer patient. It hurts to type those words even. I feel my eyes swelling up and a lump grows in my throat just getting those words in text. With that said, I guess some clarification is needed. I will not ever allow this to be my normal, no one should. I found myself this Monday morning waking up as though this is my new life. Just another start to another week. More appointments and treatments. Have I began to treat this as my career? I am limited in what I can do physically to keep my mind occupied through out the day, just due to nature of type of cancer I have, but still, thats no excuse. I find myself almost letting the disease drive the bus for a while, which a while back, I thought would be ideal. Just get into the routine of treatment and go with the flow. I am not sure thats so much what I need, atleast not sure thats what my mind needs. No one has to accept cancer, or the diagnosis they are given. You dont have to look far in any part of society to realize that numbers and stats do lie, or atleast they are not always right. Maybe they dont lie, but they certainly decieve and mislead.
I am not ready to let anyone else drive this short bus full of crazy besides me. It may be easier to just sit back and let someone, but that wouldnt be true to character; however a proactive approach, spearheaded by yours truly would seem a bit more true to form. Now I am not going rewrite any books on medicine, but I'll be damned if I am gonna let this single battle shape and define my life or who I am, no matter how siginifcant this battle is.
There is some question that lingers in my mind as to what my new "normal" will be. Time will tell. Thats the new anticipation I suppose. Before we searched for a diagnosis, then we sought an effective approach to treatment. Now with those two objectives passified for now, I find my mind wandering to the next question, which is "whats next". I dont think anyone knows, it is truly a day to day situation. I have however accepted that my new "normal" will not be the same as my old. Thats not terrible, but simply different. I will have some different limitations I am sure. I dont remember what normal is. Its not this, I know that much. This has got to make us all better though in the long run I would imagine. Life couldn't have brought me this far just to drop me on my head. There is a plan in store that is going to make us all better people and peers to one another when the dust settles, I am certain.
I have to get around and get to my shot's this morning..... keep the support coming. Its been amazing, and so welcome. There are times that are tough, but it doesnt take long to find someone to lean on for support and guide me through, even when they dont realize they are.
-IM OUT
I am not ready to let anyone else drive this short bus full of crazy besides me. It may be easier to just sit back and let someone, but that wouldnt be true to character; however a proactive approach, spearheaded by yours truly would seem a bit more true to form. Now I am not going rewrite any books on medicine, but I'll be damned if I am gonna let this single battle shape and define my life or who I am, no matter how siginifcant this battle is.
There is some question that lingers in my mind as to what my new "normal" will be. Time will tell. Thats the new anticipation I suppose. Before we searched for a diagnosis, then we sought an effective approach to treatment. Now with those two objectives passified for now, I find my mind wandering to the next question, which is "whats next". I dont think anyone knows, it is truly a day to day situation. I have however accepted that my new "normal" will not be the same as my old. Thats not terrible, but simply different. I will have some different limitations I am sure. I dont remember what normal is. Its not this, I know that much. This has got to make us all better though in the long run I would imagine. Life couldn't have brought me this far just to drop me on my head. There is a plan in store that is going to make us all better people and peers to one another when the dust settles, I am certain.
I have to get around and get to my shot's this morning..... keep the support coming. Its been amazing, and so welcome. There are times that are tough, but it doesnt take long to find someone to lean on for support and guide me through, even when they dont realize they are.
-IM OUT
Saturday, March 13, 2010
progress?
We went to Dr. Paloyan's wednesday, it was quite positive. I got some medications adjusted, got a good nights sleep, and had a fantastic Thursday, great dinner with wife, mom and dad. Friday was not too bad, was a bit sore, but got out and about again with stacy, lilli, mom and dad, enjoyed the day. Actually swallowed my pride and rode a power scooter around Sam's club. Spent most of today nursing a pretty sore lower back. The leg pain and weekness seems to be under control, but the back is really hindering movement and mobility as of lately. I am early in this round of treatments though, and am very eager to get a few more under my belt. There is also a procedure we are considering where they can inject a "bone cement" into the cancer affected areas of my spine, primarly my lower back, sacrum. The injection will then give that weakened area a bit more integrity. We are considering this, and may even do this very soon. My spine is riddles with tumors, but there are two primary areas that cause me pain, and those would be the focus. These two areas already have "multiple stress fractors", so hopefully we can get that under control asap.
I am better this week than I was last week, so... thats progress in anyones book. Its easy to get overwhelmed with these symptons that just pop up. Its so difficult to put into words, other than, its just plain weird. Nothings right, nothings normal, nor will it ever be again. Thats a reality that set in as of recently. I dont know what normal feels like, and probably never will again. Thats ok though. A coach in high school used to say .... "remember who you are, where you come from and who loves ya"..... that couldnt ring more true.
Some fantastic basketball on the television as of lately, so can't complain there... good food around as well... life aint bad!
Grandpa Bill's back on track and we will be car pooling to chemo on Wednesday... I am not sure if that clinic is ready for this duo. I think I may even have a full day with NO appointments and no shots next week, give my crew a bit of a break. Thank you soo much to everyone, especially my dad, TK and my wife, Stacy... I have no idea what I would do without you guys...truly.
I am better this week than I was last week, so... thats progress in anyones book. Its easy to get overwhelmed with these symptons that just pop up. Its so difficult to put into words, other than, its just plain weird. Nothings right, nothings normal, nor will it ever be again. Thats a reality that set in as of recently. I dont know what normal feels like, and probably never will again. Thats ok though. A coach in high school used to say .... "remember who you are, where you come from and who loves ya"..... that couldnt ring more true.
Some fantastic basketball on the television as of lately, so can't complain there... good food around as well... life aint bad!
Grandpa Bill's back on track and we will be car pooling to chemo on Wednesday... I am not sure if that clinic is ready for this duo. I think I may even have a full day with NO appointments and no shots next week, give my crew a bit of a break. Thank you soo much to everyone, especially my dad, TK and my wife, Stacy... I have no idea what I would do without you guys...truly.
Friday, March 12, 2010
- I got nothing -
I just woke up from the afternoon nap to see Ohio State bury a last second long shot to win over Michigan... and this is who your money's going on Andy?
Anyway, speaking of Andy... got a nice email this morning from him, not uncommon as of late... this morning's email was telling me how everywhere he goes people were asking about how I was doing, because they knew I had contact with him. It really amazes me how much support is out there. I was taking said nap above, and was planning on getting on here to write a fancy little blog post full of adjectives to express my heart felt feelings of thanks and gratitude. When it comes down to it, I really have nothing more that I can say other than thank you!
I really cannot imagine going through this without everyone. I hear stories of people new to town or just moved to the area, not familier with anyone or anything for thousands of miles. I just cant imagine. I look at my day to day life over the past 60 days, and I just cant imagine one day with out my dad, wife, mom and all the others their to help and get things taken care of. They have given me the best chance I could ever have to kick this thing, and thats such an amazing gift. Its gotta be getting old, but I have to keep saying it, thank you!
Sooo... thats about all I got for today. I was gonna get really deep and blow your minds with some verbal voodoo through the keyboard..... but then that damn last second shot from Andy's Buckeyes through my narrow train of thought wide left.
Anyway, speaking of Andy... got a nice email this morning from him, not uncommon as of late... this morning's email was telling me how everywhere he goes people were asking about how I was doing, because they knew I had contact with him. It really amazes me how much support is out there. I was taking said nap above, and was planning on getting on here to write a fancy little blog post full of adjectives to express my heart felt feelings of thanks and gratitude. When it comes down to it, I really have nothing more that I can say other than thank you!
I really cannot imagine going through this without everyone. I hear stories of people new to town or just moved to the area, not familier with anyone or anything for thousands of miles. I just cant imagine. I look at my day to day life over the past 60 days, and I just cant imagine one day with out my dad, wife, mom and all the others their to help and get things taken care of. They have given me the best chance I could ever have to kick this thing, and thats such an amazing gift. Its gotta be getting old, but I have to keep saying it, thank you!
Sooo... thats about all I got for today. I was gonna get really deep and blow your minds with some verbal voodoo through the keyboard..... but then that damn last second shot from Andy's Buckeyes through my narrow train of thought wide left.
Thursday, March 11, 2010
-top of the morning to ya-
Best I have slept in the past month, so much so that this is from my blackberry... Now that's "change" you can measure (take note U.S. Government...ha) Seriously though, this is something that has hindered me the entire time, and to get a solid nights sleep waking only once to an ALARM for medication is a welcome surprise.
(back on the laptop)
I forgot to mention, but my dad noticed this yesterday. Its not uncommon for me, at 29 years old, to be the youngest patient in my oncologist's office when I am there (which is daily). Yesterday there was both a gal and guy younger than I, both bald, both their for treatment with their family's and support groups in tow. This disease knows no age or limitations. Its not prejudice, it doesnt care about money or class. My intent is not to make people hypochondriacs, but just to make people aware. This has changed my life and the lives of those around me, but that isnt necessarily a bad thing. Its made us stronger and realize what really matters in life.
(back on the laptop)
I forgot to mention, but my dad noticed this yesterday. Its not uncommon for me, at 29 years old, to be the youngest patient in my oncologist's office when I am there (which is daily). Yesterday there was both a gal and guy younger than I, both bald, both their for treatment with their family's and support groups in tow. This disease knows no age or limitations. Its not prejudice, it doesnt care about money or class. My intent is not to make people hypochondriacs, but just to make people aware. This has changed my life and the lives of those around me, but that isnt necessarily a bad thing. Its made us stronger and realize what really matters in life.
*** This just in***
It's World Kindey Day, just over heard the Today show mention that. Not sure what all that involves, but something worth looking into!
Wednesday, March 10, 2010
check!
Some decent news and more signs of hope today after visiting Dr. Paloyan. A slightly varied recipe of medications will hopefully keep the pain under control. I have said it before, but that guy has been amazing. He has a way of putting my mind at ease and I walk out of there feeling better about everything. The MRI's were as interpreted by the neurosergon, showing progress, and that we are heading in the right direction. Lets only hope that the chemotherapy will continue to push my recovery along!
I ran into my Grandpa Bill at the oncologist. He was their for his second chemo treatment, but after some tests, they admitted him to the hospital for an infection. It sounds as though it was a serious matter that needed to be addressed, but they have it under control and lets be greatful for that. The concern is that his immune system as well as mine are very vulnerable to infection and getting sick in general.
I finally gave in and got the shower setup for my handicapped ass, as well as updated the wheels on my walker from 2.5" to 5" spindle mounts!!! Ha...
Thanks again everyone. Daily, the amount of support makes life just a little bit easier for all of us. Stacy and I appreciate it, truly. As do my parents and family. I appreciate it more than I can express. I am left to rely on people for alot of aspects of my life as of right now, and I dont know how I could do it else wise.
I ran into my Grandpa Bill at the oncologist. He was their for his second chemo treatment, but after some tests, they admitted him to the hospital for an infection. It sounds as though it was a serious matter that needed to be addressed, but they have it under control and lets be greatful for that. The concern is that his immune system as well as mine are very vulnerable to infection and getting sick in general.
I finally gave in and got the shower setup for my handicapped ass, as well as updated the wheels on my walker from 2.5" to 5" spindle mounts!!! Ha...
Thanks again everyone. Daily, the amount of support makes life just a little bit easier for all of us. Stacy and I appreciate it, truly. As do my parents and family. I appreciate it more than I can express. I am left to rely on people for alot of aspects of my life as of right now, and I dont know how I could do it else wise.
Tuesday, March 9, 2010
-pluggin along-
I would have a hard time telling you which is the more difficult part of this part of my life, the physical fight, or mental.
I have an over analytical mind as it is, and then to fuel that fire with something like a diagnosis of cancer, or the waiting between appointments, it can get a bit overwhelming. I am used to instant results or reward. In the past, I'd do something, and I can see what my efforts produced, almost immediatly. That is far from the case here. There is alot of waiting, its just as simple as that.. I now have to exercise every bit of patients I have, and I find myself exhausting those at times. Its easy to drift into a mental state thats not positive or healthy. Thats not an option. I have to remind myself of that. I really cant dwell on the fact that right now my focus is geting healthy. Sometimes I feel like thats not enough. I feel like I should be able to work on getting healthy, as well as get 8-10 hours of work done a day. That just is not the case. Priority number one right now is my health, and actually, thats plenty enough to fill my plate for the day.
Physcially, the patients are tested as well. I am still dealing with same symptons of leg and back pain and weakness which I am ready to move on from. I think we started altering the medications just in time, as I can tell the same muscle fatigue and weekness thats in my legs and feet, is some what started in my arms and hands. If I couldnt get on this laptop periodically through the day, I dont know what I would do. Tomarrow hopefully I can get some answers in this area. We meet with Dr. Paloyan tomorrow, and I am hoping that we can get some of the pain under control again and maybe in between the future chemo treatments I can resort to a schedule and some sort of normalcy. As of now the chemo hasnt been too bad, just the fatigue and what not. Still have my hair too!
In the mean time, I have been going to get my shot every morning. TK and I have been knocking out a few little things through out the remainder of the mornings, and thats about it. I get a few good hours a day up and out, at the most. I try to make the best of them. The afternoons and evenings have been occupied with some exersizing, computer work for the shop, networking etc.... and some great reading. I have recieved a handful of great books and magazines from friends and family, and they were all pleasant surprises. I am making a point to get those read this week, or at least a good dent into them. Also recieved a handful of cd's that were made for me by one of Stacy's co-workers. Her cd's are always a great, an eclectic mix, all different types of funk, jam, acoustic, soulful tunes. Music is something that has always been a vitale part of my life, even if its just in the background, it was a way to get away. I need to get back to that.
Selection Sunday is coming up, then its on. I look forward to that. March Madness is here.
I have an over analytical mind as it is, and then to fuel that fire with something like a diagnosis of cancer, or the waiting between appointments, it can get a bit overwhelming. I am used to instant results or reward. In the past, I'd do something, and I can see what my efforts produced, almost immediatly. That is far from the case here. There is alot of waiting, its just as simple as that.. I now have to exercise every bit of patients I have, and I find myself exhausting those at times. Its easy to drift into a mental state thats not positive or healthy. Thats not an option. I have to remind myself of that. I really cant dwell on the fact that right now my focus is geting healthy. Sometimes I feel like thats not enough. I feel like I should be able to work on getting healthy, as well as get 8-10 hours of work done a day. That just is not the case. Priority number one right now is my health, and actually, thats plenty enough to fill my plate for the day.
Physcially, the patients are tested as well. I am still dealing with same symptons of leg and back pain and weakness which I am ready to move on from. I think we started altering the medications just in time, as I can tell the same muscle fatigue and weekness thats in my legs and feet, is some what started in my arms and hands. If I couldnt get on this laptop periodically through the day, I dont know what I would do. Tomarrow hopefully I can get some answers in this area. We meet with Dr. Paloyan tomorrow, and I am hoping that we can get some of the pain under control again and maybe in between the future chemo treatments I can resort to a schedule and some sort of normalcy. As of now the chemo hasnt been too bad, just the fatigue and what not. Still have my hair too!
In the mean time, I have been going to get my shot every morning. TK and I have been knocking out a few little things through out the remainder of the mornings, and thats about it. I get a few good hours a day up and out, at the most. I try to make the best of them. The afternoons and evenings have been occupied with some exersizing, computer work for the shop, networking etc.... and some great reading. I have recieved a handful of great books and magazines from friends and family, and they were all pleasant surprises. I am making a point to get those read this week, or at least a good dent into them. Also recieved a handful of cd's that were made for me by one of Stacy's co-workers. Her cd's are always a great, an eclectic mix, all different types of funk, jam, acoustic, soulful tunes. Music is something that has always been a vitale part of my life, even if its just in the background, it was a way to get away. I need to get back to that.
Selection Sunday is coming up, then its on. I look forward to that. March Madness is here.
Sunday, March 7, 2010
keep on, keeping on...
Nothing much to report other than its just been another weekened slowly slipping away. Nothing too exciting to report, which is good. Just been relaxing, laying low with family, trying to do as little as possible. Been quite tired and sore, numb legs... same sypmtoms I was whining about three days ago, so no need to beat a dead horse their. All and All, just plugging away. I know this week will probably be more of the same. I am going to try to get some sort of routine and get into some sense of normalcy, if for nothing else, a piece of mind. I have appointments for shots everyday this week, but those dont take but a minute.
Their has been some great basketball, and more to come. No real run away favorites for this years tourney, which should make it interesting. I am still pulling for the Spartan's, but Duke is on my list as teams to watch as well. We shall see.
Thats about it folks for this weekend... pretty uneventful, which is nice for a change. I know my Grandpa Bill may not be having such an easy ride, so my thoughts and prayers are with him, he is a tough old man though and will make it through stronger than ever, and I know my time is coming. We are going through this together, and thats what will help us get through it.
Thanks again to everyone, once again, it doesnt stop, daily the support rolls in, in many shapes and forms, and they are all very appreciated!
Their has been some great basketball, and more to come. No real run away favorites for this years tourney, which should make it interesting. I am still pulling for the Spartan's, but Duke is on my list as teams to watch as well. We shall see.
Thats about it folks for this weekend... pretty uneventful, which is nice for a change. I know my Grandpa Bill may not be having such an easy ride, so my thoughts and prayers are with him, he is a tough old man though and will make it through stronger than ever, and I know my time is coming. We are going through this together, and thats what will help us get through it.
Thanks again to everyone, once again, it doesnt stop, daily the support rolls in, in many shapes and forms, and they are all very appreciated!
Friday, March 5, 2010
...time out...
Well, its been a long day with appointments through out. Also had some MRI's yesterday. So the past two days have been exhausting. The Chemo hasnt caused too much havoc yet, other than it has me fatigued easily. Sooo... all and all, just been tired the last two days. Feeling good. WEAK, but good. MRI's of my back gave us some good news, in that it showed where radiation has had a positive effect on the areas of my spine where they hoped it would. The tumors seemed to be more controled, smaller in size maybe... and there is no nerve or spinal cord damage or risk their of. So that was great. All the weakness and numbness I am expiriencing is, as stated before, a side effect of the combination of drugs they have me on, which we are taking care of. Sounds like we are on track with everything, and time will tell.
Looking forward to relaxing and getting some rest the next couple days. More appointments next week, but we are on track, and thats a good thing. The support, once again, has been amazing! I keep saying that, but its sooo true. I cant say thank you enough. I tell those around me all the time, that I cannot imagine having to go at this any other way... without everyones support and help it wouldnt be possible.
Looking forward to relaxing and getting some rest the next couple days. More appointments next week, but we are on track, and thats a good thing. The support, once again, has been amazing! I keep saying that, but its sooo true. I cant say thank you enough. I tell those around me all the time, that I cannot imagine having to go at this any other way... without everyones support and help it wouldnt be possible.
Wednesday, March 3, 2010
get set... gO!
One down...
As stated, today was the first of my chemotherapy treatments, and it was scheduled to be a 6 hour session. I got a pleasent surprise today as it only ended up being a couple hours all together. I guess there was some different approaches to the recipe that I recieved today, and that resulted in a shorter, but stronger dosage I guess? I dont know really, it was all kind of foriengn to me. A bit intimidating, but all and all, I was very excited to get that one under my belt and get on the way to remission. The entire expirience was hard to explain, and obiviously something I never thought I would go through. I am prepared for the side effects as we are all certain that they will present themselves at some point here soon. The combination of drugs they pumped into my blood stream today truly amazes me. The one chemical will literally burn your skin off, destroy your bare skin, but once placed in your blood stream its diluted just enough to not hurt you too bad, and attack the cancer cells its intended to. Think about that, its really amazing!
Thats about as plain and simple as you can put it. I sat around all day thinking about this type of thing. Thinking about what was really happening, and the actuallity of the situation. Its really down to the nitty gritty at this point. This is it!
As far as side effects, nothing really yet, just tired. My hair is on borrowed time, probably next day or two they said I can expect that to go. Every 2 weeks I will be getting chemo, and the side effects will intensify as they go.
I actually go for some more MRI's this week to keep an eye on things in my back, spine and head. We will go over those results with my Neuro Sergeon and Oncologist just to make sure that we have things under control, and that my spinal cord is not in jeopardy in any way shape or form. Their has been some issues with my jaw and head as late that may need attention, we will see. Also scheduled to have some heart tests to make certain my ticker is up to the chemo that I am about to recieve. Just when you think the scans and tests and needles are done, you get another weeks of appointments lined up, ha.
Getting excited about some good basketball coming up, conference tournys start this week, then on to march madness.
Keep the messages coming. Its great to read them all, and I truly appreciate the support. Its humbling and really chokes me up to think that your all their for me and my family. It certainly makes this a bit more comfortable. We will get through this, there is no option. I can't wait. It aint gonna be easy, but only the strong survive right? I got the impression today that his thing is going to put up a hell of a fight, but I know someone whose willing to put up one hell of a fight back, ha.
In the mean time, I have some pretty mean chops growing here... hate to see em go
I gotta shower, its been a few days.
As stated, today was the first of my chemotherapy treatments, and it was scheduled to be a 6 hour session. I got a pleasent surprise today as it only ended up being a couple hours all together. I guess there was some different approaches to the recipe that I recieved today, and that resulted in a shorter, but stronger dosage I guess? I dont know really, it was all kind of foriengn to me. A bit intimidating, but all and all, I was very excited to get that one under my belt and get on the way to remission. The entire expirience was hard to explain, and obiviously something I never thought I would go through. I am prepared for the side effects as we are all certain that they will present themselves at some point here soon. The combination of drugs they pumped into my blood stream today truly amazes me. The one chemical will literally burn your skin off, destroy your bare skin, but once placed in your blood stream its diluted just enough to not hurt you too bad, and attack the cancer cells its intended to. Think about that, its really amazing!
Thats about as plain and simple as you can put it. I sat around all day thinking about this type of thing. Thinking about what was really happening, and the actuallity of the situation. Its really down to the nitty gritty at this point. This is it!
As far as side effects, nothing really yet, just tired. My hair is on borrowed time, probably next day or two they said I can expect that to go. Every 2 weeks I will be getting chemo, and the side effects will intensify as they go.
I actually go for some more MRI's this week to keep an eye on things in my back, spine and head. We will go over those results with my Neuro Sergeon and Oncologist just to make sure that we have things under control, and that my spinal cord is not in jeopardy in any way shape or form. Their has been some issues with my jaw and head as late that may need attention, we will see. Also scheduled to have some heart tests to make certain my ticker is up to the chemo that I am about to recieve. Just when you think the scans and tests and needles are done, you get another weeks of appointments lined up, ha.
Getting excited about some good basketball coming up, conference tournys start this week, then on to march madness.
Keep the messages coming. Its great to read them all, and I truly appreciate the support. Its humbling and really chokes me up to think that your all their for me and my family. It certainly makes this a bit more comfortable. We will get through this, there is no option. I can't wait. It aint gonna be easy, but only the strong survive right? I got the impression today that his thing is going to put up a hell of a fight, but I know someone whose willing to put up one hell of a fight back, ha.
In the mean time, I have some pretty mean chops growing here... hate to see em go
I gotta shower, its been a few days.
Tuesday, March 2, 2010
on your mark!
Well, the port is installed, and I am ready to begin chemothreapy tomorrow at 9am. I am scheduled for a 6-7 hour session, so a long day is in store. I am ready though... ready to get on with this. As stated in earlier posts, I had a few days the last week that were worse than others, but all and all, I am still feeling pretty dang swell. I got out with my Grandpa today to drink coffee with the guys from work, which was nice, for both of us.
I am eager to get on with the next phase of this fight. I finished up my last radiation treatment this morning, for now anyway. The focus now is chemo, and getting some strength back through physical threapy and exercise.
As for now, its time for the nightly routine of blood pressure, tempurature, medications topped off with the fruity laxitive drink !!!! I will have my computer and blackberry tomorrow for 6 hours while hooked up to chemo so keep the messages coming! I'm out
I am eager to get on with the next phase of this fight. I finished up my last radiation treatment this morning, for now anyway. The focus now is chemo, and getting some strength back through physical threapy and exercise.
As for now, its time for the nightly routine of blood pressure, tempurature, medications topped off with the fruity laxitive drink !!!! I will have my computer and blackberry tomorrow for 6 hours while hooked up to chemo so keep the messages coming! I'm out
Monday, March 1, 2010
side effects
This is all part of it I guess. To make a long story short...I am on quite a few prescriptions since this all began a month ago. Some of those medications, although they are needed and beneficial in the fight against cancer, have some adverse side effects. Weird odd side effects, not to mention, when you ween off them, they take on a whole new face and do weird things. Plus throw 3 weeks radiation in there and thats where I am at now. If I was to stay on some of these medications long enough, they can be harmful, so we are working on try to taper off some of the dosages. In doing so I have become very weak. One of the side effects is muscle fatigue and deterioration. So now the new challenge is overcoming this weekness. I cannot desribe how deteriorated my muscles have become, especially my legs. Apparently, this is all part of it, which I was ensured was the case after speaking with Dr. Paloyan. The steriod I am on is very effective from an oncologic standpoint, but as stated, extended use is harmful, and the procress of weening off of it can be tricky.
I can't really complain. I am just about a month into this diagnosis and really have not had too many adverse side effects from anything until now. The radiation has a few that I am coping with now, and this medication issue, but all and all, life ain't bad, and surly could be worse.
Some exercise and physical threapy is probably in store in the future as soon as my back is up to it. As for now, its more radiation this morning. This evening I am scheduled to have a port installed at the hospital, a simple outpatient procedure. The biggest issue with that is the 12 hours of fasting before.
I can't really complain. I am just about a month into this diagnosis and really have not had too many adverse side effects from anything until now. The radiation has a few that I am coping with now, and this medication issue, but all and all, life ain't bad, and surly could be worse.
Some exercise and physical threapy is probably in store in the future as soon as my back is up to it. As for now, its more radiation this morning. This evening I am scheduled to have a port installed at the hospital, a simple outpatient procedure. The biggest issue with that is the 12 hours of fasting before.
Saturday, February 27, 2010
...dogs are barkin...
Long day today...
Spent better part of the day watching Lilli play basketball. Thats always great, and today was no exception. I have missed a few games this year due to the appointments, hospital stays etc. She had two today, and it was nice to get out and enjoy those with her, her fan club. She played well, and we all had fun. It was then onto dinner and groceries with the wife. These sound like routine things for most people, but you have to understand, my typical day over the past month consist of no more than 20-30 steps with a walker. Thats why I type this nonesense... these are vast improvements people! Ha. I know an afternoon at a 11yr old girls basketball game, dinner and groceries with the wife might not be really a "homerun" of a Saturday for some 29yr old men, but for me it meant alot was one of the better days I've had in a long time. This whole fight is a blessing in disguise. There is a light that portrays the days events just a little differently now than it did a month ago, and thats the truth. Things happen for a reason.
My back is doing better by the day, not sure what to attribute that to other than all the above. The radiation or any of the numerous prescription meds could be the cause, but I do know that they all come with some adverse side effects, which I am battling now. The steriod that they have me on right from day one, to help get things undercontrol and slow the spread of cancer down, is also known to deteriorate muscle. Well.... it has. My muscle mass throughout my body has literally melted away. So, the pain is better, but now I battle severe weekness and high blood pressure. Its almost comical. I wake up each day wondering what symptom will pop up today. It reminds me of the old arcade game with the weasal that pops his head up, you beat the hell out of it with a mallet, forcing it back into the hole, and then another pops up somewhere else and you battle that bastard until another wears his head elsewhere. This disease has a way of making you just feel weird, thats the best way I can explain it. Nothings right, its all wrong. Like I mentioned, I wake up, or get out of the chair and its one of those "what the hell?...." moments, and you just shake your head and chalk it up to just being part of "it". Either this doesnt work, or this is sagging, or this hurts, or that one thing is back and its numb.
Never the less, the dosages of some of the meds are changing slightly and we'll get these latest concerns whipped into shape as well. The main concern now as stated in the last posting is the cancer itself and getting that undercontrol, which we are.
It could be worse. Just watch the news. I have alot going for me here. Great people and enviroment surrounding me, and the love and support that shows up here, on the phone and in person through out the day. I love the comments on here and in emails. Keep em coming. Seen some old names come up that I have not heard in a while, which is a pleasant surprise. Once again, things happen for a reason, and we'll be better for it.
I am setting a goal today and it may be a bit out there.... but I will golf again this year.
Spent better part of the day watching Lilli play basketball. Thats always great, and today was no exception. I have missed a few games this year due to the appointments, hospital stays etc. She had two today, and it was nice to get out and enjoy those with her, her fan club. She played well, and we all had fun. It was then onto dinner and groceries with the wife. These sound like routine things for most people, but you have to understand, my typical day over the past month consist of no more than 20-30 steps with a walker. Thats why I type this nonesense... these are vast improvements people! Ha. I know an afternoon at a 11yr old girls basketball game, dinner and groceries with the wife might not be really a "homerun" of a Saturday for some 29yr old men, but for me it meant alot was one of the better days I've had in a long time. This whole fight is a blessing in disguise. There is a light that portrays the days events just a little differently now than it did a month ago, and thats the truth. Things happen for a reason.
My back is doing better by the day, not sure what to attribute that to other than all the above. The radiation or any of the numerous prescription meds could be the cause, but I do know that they all come with some adverse side effects, which I am battling now. The steriod that they have me on right from day one, to help get things undercontrol and slow the spread of cancer down, is also known to deteriorate muscle. Well.... it has. My muscle mass throughout my body has literally melted away. So, the pain is better, but now I battle severe weekness and high blood pressure. Its almost comical. I wake up each day wondering what symptom will pop up today. It reminds me of the old arcade game with the weasal that pops his head up, you beat the hell out of it with a mallet, forcing it back into the hole, and then another pops up somewhere else and you battle that bastard until another wears his head elsewhere. This disease has a way of making you just feel weird, thats the best way I can explain it. Nothings right, its all wrong. Like I mentioned, I wake up, or get out of the chair and its one of those "what the hell?...." moments, and you just shake your head and chalk it up to just being part of "it". Either this doesnt work, or this is sagging, or this hurts, or that one thing is back and its numb.
Never the less, the dosages of some of the meds are changing slightly and we'll get these latest concerns whipped into shape as well. The main concern now as stated in the last posting is the cancer itself and getting that undercontrol, which we are.
It could be worse. Just watch the news. I have alot going for me here. Great people and enviroment surrounding me, and the love and support that shows up here, on the phone and in person through out the day. I love the comments on here and in emails. Keep em coming. Seen some old names come up that I have not heard in a while, which is a pleasant surprise. Once again, things happen for a reason, and we'll be better for it.
I am setting a goal today and it may be a bit out there.... but I will golf again this year.
Friday, February 26, 2010
patients
I made a commitment last night to gain a better understanding of the game Curling. As I sit here watching the US Hockey team walk through the Finland squad, I figured I would do a bit of research. Here are two links that may help....
- EVERYTHING CURLING
http://www.worldcurling.org/
- SIMPLE INSTRUCTION
http://www.associatedcontent.com/article/2721071/understanding_basic_curling_rules_and.html?singlepage=true
This morning I found myself getting a bit impatient with being so weak and not seeing instant results. Dont get me wrong, I am better today than I was 2-3 weeks ago. But I get frustrated with being so limited in what I can do. I made some phone calls, get through the morning and it doesnt take long though for me to realize what I am up against and going through. My leg and muscle weakness is all part of this, and really not the main concern right now. One of the many medications they have me on to maintain and control the cancer actually causes muscle fatigue and loss. My thighs are litterally the size of my upper arms. The cancer in my spine, and bone has some effect on all this obviously as well. This isnt the 24hr flu, or a virus I get over in 2-3 weeks. I keep feeling I should be able to do the things I was doing 3 months ago, but that just isnt the case. I have to keep it in perspective. Right now the focus is the cancer itself. The legs, multiple back fractures, kidney removal and other ailments are things that we will address later. We are attacking the cancer, as we speak, and will continue to. The primary areas of concern in my back are recieving radiation and are more under control now than they were.
Chemo may or may not start Wednesday, as of right now, I think we are still on. We may do a weeks more radiation, in which case they will push the chemo back a week, due to the fact that they dont want to tax my body anymore than they have to. I will be getting the port for the chemo installed Monday, so back to the hospital, but just as outpatient this time.
Enough of that medical jargin...
USA hockey is impressive, Sunday should provide some good television as we go for gold.
I have a new challenge as Bill and I have the same book of New York Times crosswords, so let the games begin. Thanks Ann.... although Grandpa took it upon himself to get 3 puzzles up on me before delivering mine.
I am going to try and get down to Tigmaster early next week... actually kind of miss you guys. I may have to come down with some donuts or something. Things should slow down once chemo begins and allow a bit more time.
Really eager to get back in the shop. I have some of the best customers and friends in the world. All very understanding, and the support that has came from them all is truly amazing. Thank you all of you... I have said that personally to you all, but I wanted to here as well. I have some exciting projects and things in store for Vendetta Auto Fab, and am doing as much as I can for it all from home, but nothing makes up for shop time. It will happen.
Well my company has come and gone while I sat here writing this, and Lilli and Stacy are here now and I dont need to be on here all evening, so take care and feel free to comment. I tried to make it as easy as I could for folks to comment. Just remember, no "double clicking" and use comment as "Anonymous" unless you are a follower.
- EVERYTHING CURLING
http://www.worldcurling.org/
- SIMPLE INSTRUCTION
http://www.associatedcontent.com/article/2721071/understanding_basic_curling_rules_and.html?singlepage=true
This morning I found myself getting a bit impatient with being so weak and not seeing instant results. Dont get me wrong, I am better today than I was 2-3 weeks ago. But I get frustrated with being so limited in what I can do. I made some phone calls, get through the morning and it doesnt take long though for me to realize what I am up against and going through. My leg and muscle weakness is all part of this, and really not the main concern right now. One of the many medications they have me on to maintain and control the cancer actually causes muscle fatigue and loss. My thighs are litterally the size of my upper arms. The cancer in my spine, and bone has some effect on all this obviously as well. This isnt the 24hr flu, or a virus I get over in 2-3 weeks. I keep feeling I should be able to do the things I was doing 3 months ago, but that just isnt the case. I have to keep it in perspective. Right now the focus is the cancer itself. The legs, multiple back fractures, kidney removal and other ailments are things that we will address later. We are attacking the cancer, as we speak, and will continue to. The primary areas of concern in my back are recieving radiation and are more under control now than they were.
Chemo may or may not start Wednesday, as of right now, I think we are still on. We may do a weeks more radiation, in which case they will push the chemo back a week, due to the fact that they dont want to tax my body anymore than they have to. I will be getting the port for the chemo installed Monday, so back to the hospital, but just as outpatient this time.
Enough of that medical jargin...
USA hockey is impressive, Sunday should provide some good television as we go for gold.
I have a new challenge as Bill and I have the same book of New York Times crosswords, so let the games begin. Thanks Ann.... although Grandpa took it upon himself to get 3 puzzles up on me before delivering mine.
I am going to try and get down to Tigmaster early next week... actually kind of miss you guys. I may have to come down with some donuts or something. Things should slow down once chemo begins and allow a bit more time.
Really eager to get back in the shop. I have some of the best customers and friends in the world. All very understanding, and the support that has came from them all is truly amazing. Thank you all of you... I have said that personally to you all, but I wanted to here as well. I have some exciting projects and things in store for Vendetta Auto Fab, and am doing as much as I can for it all from home, but nothing makes up for shop time. It will happen.
Well my company has come and gone while I sat here writing this, and Lilli and Stacy are here now and I dont need to be on here all evening, so take care and feel free to comment. I tried to make it as easy as I could for folks to comment. Just remember, no "double clicking" and use comment as "Anonymous" unless you are a follower.
... same old song and dance ...
More radiation, and appointments this morning, nothing too different from the past mornings. Plan is still to start chemo next wednesday, Mar 3rd. Although that may change as they are talking about continuing radiation on a bit longer than expected. I dont know anymore than that at this point, but I will soon find out.
Been trying to get out and about a little in the mornings while we go to treatment, just to break up the day. Still quite weak, and muscle loss is very evident, but thats all part of this fight I guess. I miss the old routine and people I used to see regularly. Things have changed greatly, thats for sure, but the break and down time has definitely helped.
I will try to keep this up to date. Just alot of the same old stuff this week it seems. Had a good family gathering last evening that the grandparents... thats always good. Also, once again, we've recieved alot of nice surprises and tokens of support in all forms over the past few days, and I cant express how appreciative we are for these gestures.
Been trying to get out and about a little in the mornings while we go to treatment, just to break up the day. Still quite weak, and muscle loss is very evident, but thats all part of this fight I guess. I miss the old routine and people I used to see regularly. Things have changed greatly, thats for sure, but the break and down time has definitely helped.
I will try to keep this up to date. Just alot of the same old stuff this week it seems. Had a good family gathering last evening that the grandparents... thats always good. Also, once again, we've recieved alot of nice surprises and tokens of support in all forms over the past few days, and I cant express how appreciative we are for these gestures.
Tuesday, February 23, 2010
...its gonna be a good day...
Ended last night here at my place with my parents leaving, saying their good byes, and finalizing plans for this morning. Anyone who knows my father, knows he enjoys a good breakfast as much as the next guy. It doesnt take much to talk him into a trip to his local regular coffee shop, where everyone knows his name.... TK. In true carpe diem fasion, I seize the opportunity and hit him up as he walks out the door. I mention that after radiation, we can maybe grab a bite to eat, we agree that is indeed a fine idea and we will see each other in the morning hours. Radiation is at 9am, we typically leave by 8:30.
Sleept in til about 6:18 am, phone rings and we're up and at em. Chalk it up to the Kacynski's superb communication skills or lack there of, but some how there was a misunderstanding about when breakfast was coming into play for this mornings plans. Never the less I was up, did the morning routine of checking blood pressure, emptying the pill box marked "tues a.m." and on to the shower. Except one glich, the blood pressure. It was out of sight. Too high to mention here. I had to take a step back, call TK back and inform him that I needed a few mins to collect myself and get this under control. I did, and by 7:20 I see the yellowed lights of the infamous PT Cruiser rolling in the drive. I open the garage door, timing my shuffle just right to just slid under the door as it opens. TK opens the passenger door to the cruiser and Im greated by the sounds Iron Maiden's "Where Eagles Dare". My old man's Pt Cruiser is a fully equipped taxi service for me as of late. The list of accomodations just expanded with the addition of Sirius Satellite Radio and the station known as "The Boneyard"... a deep medley of classic rock's staple artists. The short trip's soundtrack was interupted only once by a sudden and severe coughing spout that my father acknowedges was from what he thinks is a swallowed mustach whisker. Thats why I love my dad.... a spades a spade, and he calls it like he sees it.
We get to Eric's cafe, my dads regular stop and a great place to eat breakfast, period. I order a platter that gives most 300lb plus men a run for their money, most leave with a to go bag. I had it gone by the time the coffee was refilled. A couple of cups of coffee later, we talked plans of building about 3-4 different versions of a hidden hinge setup on a 1932 Ford, solved a few of the worlds economic woes in between, and finally we were headed to radiation.
The radiation process is typically very short. I am usually in and out in about 20 min. Not today. I get there on time, loaded on the table, everything is set and in position. Just when its time to press the "start" button, everything goes dark and chaos insues. Apparently they had some power issues, but my 20 min session turned into me laying on a hard table still in position for over an hour. Not good for the sore back that I am there to relieve.
Keep in mind the blood pressure.
I meet with Dr. Espinoza on Tuesday's, he is my Radiation / Oncologist. We just make sure things are on track and we think they are, besides the fact that I am now 2 hours into an appointment that typically takes 15-20 min. There was some discussion as to what other doctors have going with me and I determine that I just have too many doctors, especially for 29 years old.
The drive home was littered with falling ice from trees that had TK white knuckled and grabbin' gears in between a few explitives, and let me remind you of the blood pressure.
I have had a list of about 10 simple things to get done over the past 3 weeks, and none of them have been touched. I decided to just call it a day and come home to relax and get those things done from here in the recliner. Its amazing that I cant find time to get things done, when I have nothing to do. I keep intending on taking a nap, and it doesnt happen. It just might right now.
Thats about all I have for now. A simple morning turned into a whirlwind of memorable moments. Plans are still in place for chemo starting next week, and radiation will continue for now.
Thanks again to everyone... friends and family. Everyone... I have spoke with people I havent seen or talked to in a while and thats a good thing. Its amazing how things just kind of fall in place, and the right people are their when you need them. I really cant say that enough, THANK YOU. This is indeed a very difficult time for me and my family, but I dont know how I could be any better prepared at the age of 29 than I am now with the people that I have surrounding me.
And TK, how about them Lions?
Sleept in til about 6:18 am, phone rings and we're up and at em. Chalk it up to the Kacynski's superb communication skills or lack there of, but some how there was a misunderstanding about when breakfast was coming into play for this mornings plans. Never the less I was up, did the morning routine of checking blood pressure, emptying the pill box marked "tues a.m." and on to the shower. Except one glich, the blood pressure. It was out of sight. Too high to mention here. I had to take a step back, call TK back and inform him that I needed a few mins to collect myself and get this under control. I did, and by 7:20 I see the yellowed lights of the infamous PT Cruiser rolling in the drive. I open the garage door, timing my shuffle just right to just slid under the door as it opens. TK opens the passenger door to the cruiser and Im greated by the sounds Iron Maiden's "Where Eagles Dare". My old man's Pt Cruiser is a fully equipped taxi service for me as of late. The list of accomodations just expanded with the addition of Sirius Satellite Radio and the station known as "The Boneyard"... a deep medley of classic rock's staple artists. The short trip's soundtrack was interupted only once by a sudden and severe coughing spout that my father acknowedges was from what he thinks is a swallowed mustach whisker. Thats why I love my dad.... a spades a spade, and he calls it like he sees it.
We get to Eric's cafe, my dads regular stop and a great place to eat breakfast, period. I order a platter that gives most 300lb plus men a run for their money, most leave with a to go bag. I had it gone by the time the coffee was refilled. A couple of cups of coffee later, we talked plans of building about 3-4 different versions of a hidden hinge setup on a 1932 Ford, solved a few of the worlds economic woes in between, and finally we were headed to radiation.
The radiation process is typically very short. I am usually in and out in about 20 min. Not today. I get there on time, loaded on the table, everything is set and in position. Just when its time to press the "start" button, everything goes dark and chaos insues. Apparently they had some power issues, but my 20 min session turned into me laying on a hard table still in position for over an hour. Not good for the sore back that I am there to relieve.
Keep in mind the blood pressure.
I meet with Dr. Espinoza on Tuesday's, he is my Radiation / Oncologist. We just make sure things are on track and we think they are, besides the fact that I am now 2 hours into an appointment that typically takes 15-20 min. There was some discussion as to what other doctors have going with me and I determine that I just have too many doctors, especially for 29 years old.
The drive home was littered with falling ice from trees that had TK white knuckled and grabbin' gears in between a few explitives, and let me remind you of the blood pressure.
I have had a list of about 10 simple things to get done over the past 3 weeks, and none of them have been touched. I decided to just call it a day and come home to relax and get those things done from here in the recliner. Its amazing that I cant find time to get things done, when I have nothing to do. I keep intending on taking a nap, and it doesnt happen. It just might right now.
Thats about all I have for now. A simple morning turned into a whirlwind of memorable moments. Plans are still in place for chemo starting next week, and radiation will continue for now.
Thanks again to everyone... friends and family. Everyone... I have spoke with people I havent seen or talked to in a while and thats a good thing. Its amazing how things just kind of fall in place, and the right people are their when you need them. I really cant say that enough, THANK YOU. This is indeed a very difficult time for me and my family, but I dont know how I could be any better prepared at the age of 29 than I am now with the people that I have surrounding me.
And TK, how about them Lions?
Monday, February 22, 2010
Little help...
16 across "Limb in front" _ o _ e_ _ _ _
(UPDATE - FORELIMB is the answer, ha... thanks for the calls and emails!)
This is the toughest crossword puzzle I have stumbled upon in a while. You get used to a certain type of clue, ala the Herald-Palladium... then through this book from Walgreen's in the mix and I'm besides myself. I have been on the same puzzle for two day, humbling to say the least.
There is no way I can express how much I appreciate the family, friends and neighbors who have come to lend a hand to my family and I. I cant imagine going through this any other way.
Our pesonal email is sgmk8081@comcast.net if you need to get a hold of us through something other than the public comment on here. ALSO, to comment on here, you simply just click the "pencil" or "comment" icon and fill in the form at the bottom. You dont have to be a "follower". To be a follower you have to have a certain email account thats associated with this blogs format, which I dont even have.
(UPDATE - FORELIMB is the answer, ha... thanks for the calls and emails!)
This is the toughest crossword puzzle I have stumbled upon in a while. You get used to a certain type of clue, ala the Herald-Palladium... then through this book from Walgreen's in the mix and I'm besides myself. I have been on the same puzzle for two day, humbling to say the least.
There is no way I can express how much I appreciate the family, friends and neighbors who have come to lend a hand to my family and I. I cant imagine going through this any other way.
Our pesonal email is sgmk8081@comcast.net if you need to get a hold of us through something other than the public comment on here. ALSO, to comment on here, you simply just click the "pencil" or "comment" icon and fill in the form at the bottom. You dont have to be a "follower". To be a follower you have to have a certain email account thats associated with this blogs format, which I dont even have.
Sunday, February 21, 2010
Lazy Sunday
A lot of great sports action on the television this sunday afternoon and evening. Planning on getting real familiar with this recliner and remote.
Back to radiation bright and early tomorrow... good solid week of radiation, then on to chemo. Looking forward to progress. Once again, I feel better today than yesterday, and I wasnt sure if that was going to be the case. We had a big day out and about yesterday.
Once again, lots of support today, good company... good food. Thank you everyone!
Back to radiation bright and early tomorrow... good solid week of radiation, then on to chemo. Looking forward to progress. Once again, I feel better today than yesterday, and I wasnt sure if that was going to be the case. We had a big day out and about yesterday.
Once again, lots of support today, good company... good food. Thank you everyone!
Saturday, February 20, 2010
slap shot
Well I told myself I would keep this blog pure and true to what I believe as well as what is going on. I felt it should remain open and honest through out this period of my life. With that said my emotions got the best of me tonight, but I am a better man for it. Im not looking for sympathy or anything at all, just putting it out like it is. I am also not trying to get too personal with things that are irrelavant to others. This whole blog deal would not carry an ounce of creditability if I just painted the same picture everyday with the same brush everyday, so I try to tell it like it is. I was overwhelmed with a feeling of guilt for relying on others for everything, especially my wife, Stacy... I had a melt down. Its true, its human, and it was needed. 3 weeks into this, I just had this extreme feeling of guilt. I have to rely on someone for nearly every aspect of my life right this moment, and as I stated before, that is the toughest part for me. I am so very lucky to have family and friends who want to help and love to, but it drives me nuts that I need them to. I went from doing everything myself from 5:30am to 10:30pm everyday to what has literally become the complete opposite. It will change, I will get better. This just happens to be the harsh reality right now, and in all honesty, its not a big deal.
It was just one of those "moments" that needed to happen... it needed to be put on the table, and walked away from. There it is.
Great day throughout the day otherwise. Got out with family to some hockey and hot wings, which always beats sitting in the recliner. As for right now...I think I have some candy from the fan club to eat while I check my blood pressure. Looking forward to alot of nothing tomorrow with a little television.
Thanks again everyone, I simply can not say that enough.
Also, for those that dont know...every entry on this blog is still available to read & can be accessed through the "archive" on the right side of this page. You will see dates as well as the blog titles, simply click through those to catch up on anything you may have missed. The newest posts are obviously on top, the oldest are buried at the bottom of the archive. If you want to get back to the "main page", simply go to the top and click where it says "Mike Kacynski's 2010"
Keep em coming....
I cant thank you all enough for the kind words of support. I dont know if I can reply to them all personally through this blog directly or not, so I figured I would just put a general post here. From the posts on here, to the phone calls and company stopping by, I really do appreciate it. It is refreshing to know that their are alot of good people out there for me that are willing to extend a hand to me or my family. The support is definatly a needed resource in this fight, and I believe we have a pretty good foundation built upon such a quality. The company, messages and phone calls surely help the time go by which is a good thing while I am trying my best to keep busy here at home with non-physical activities and give my back a rest.
One more week of radiation, and then its onto chemo. Feeling a bit better each day. Still very weak, but thats to be expected all things considered. The radiation causes some muscle fatigue as I understand it. I've been able to get out a little here and there, which is nice. Stacy, Lilli and I actually may even get to my nephews hockey game today which should be a riot. All and All, we are on our way.
For those interested... my shop still goes on... Vendetta Auto Fab will still provide custom fabrication of hot rod parts and complete cars. I am at a point where I can take a bit of time off and not get into too much a hole, and thats what I need to do. Their still is alot of work to do, and I have a handful of cars to build, which I will in due time. Meanwhile alot of planning and structuring will take place while I am down.
Heres a sample of whats to come...
One more week of radiation, and then its onto chemo. Feeling a bit better each day. Still very weak, but thats to be expected all things considered. The radiation causes some muscle fatigue as I understand it. I've been able to get out a little here and there, which is nice. Stacy, Lilli and I actually may even get to my nephews hockey game today which should be a riot. All and All, we are on our way.
For those interested... my shop still goes on... Vendetta Auto Fab will still provide custom fabrication of hot rod parts and complete cars. I am at a point where I can take a bit of time off and not get into too much a hole, and thats what I need to do. Their still is alot of work to do, and I have a handful of cars to build, which I will in due time. Meanwhile alot of planning and structuring will take place while I am down.
Heres a sample of whats to come...
Thursday, February 18, 2010
"Lets get down to business..."
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.
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.
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