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!
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