Health status update - first in awhile
Hello all - fellow members and readers...
Please note that I have not titled this thread as a "cancer" status update...
I would like to be positive in this post - or at least not focused on the negative which has been a struggle at times despite your support and friendship.
While I don't think I can move forward without continuing to acknowledge that cancer will come back and kill me - with no warning or advanced notice I am trying to put myself in more of a recovery mindset in my head.
November will be the 2 year anniversary of my diagnosis
September will be the 12 month anniversary of my cancer surgery
And close follows my 12 month anniversary with flesh eating bacterial staff infection hitting - right after release from the hospital and the tumor removal
So we are approaching the 2 year survival Mark from day of diagnosis
And justifiably all involved thinking that I would be dead within 30 days as the massive stage 4 / end stage cancer had spread to the lymph nodes and from a medical standpoint nobody could understand why I was still alive
The radical course of platinum based chemotherapy and heavy duty radiation treatments continued for 6 months at a highly accelerated rate of treatment - dosage load and visit cycle
Again nobody expected me to complete the course of treatment - that the cancer would kill me any day if the treatment did not (medical impossibility they say - I am called a unicorn or a white whale as the pool of survivors in known history is 1 - just me alone)
The team wants me to have a colonoscopy / endoscopy to confirm that things look okay internally prior to them pushing for and signing off on or scheduling the ostomey reversal surgical procedure
I truly badly need and desire this and believe it's the next crucial step in my recovery program
So in less than 2 weeks I get scoped and if most of the team is pleased I push hard for the reversal procedure to be scheduled as quickly as possible
Every one is on board except for the surgeon who has been a bit difficult and perhaps over cautious (having said that I firmly believe I would be dead if not for his skill on the table)
My great desire is to face the two year diagnosis anniversary Mark being able to use a toilet again and have a bowel movement / not a bag filling event
This would to me make me intact and whole again - and I could fully focus on a more advanced and complete but difficult physical therapy recovery program and gain some strength and stamina back - learn to walk right again on my legs which are essentially non functional from the knees down
This will not be fun - I am advised it will be beyond hard and will greatly increase the pain load for quite some time
But once physical therapy begins to pay off I hope to be able to walk or drive or even work again for hours at a time
And hopefully then we can deal with getting the pain and neuropathy under control and we can back off the pain meds and fine some other way I can function
This journey has been hard as many of you know who have followed these posts
This thread has been difficult for me to complete.
But when I started this ride and so many of you agreed to stay with me to the end I promised to keep your informed and in the loop
So maybe I can put the ferrymans token back in my pocket and put off that ferry ride for awhile - and have some brief time frame of more normal function and a return to myself / the me that has been gone for so long
Thank you
Mike
Please note that I have not titled this thread as a "cancer" status update...
I would like to be positive in this post - or at least not focused on the negative which has been a struggle at times despite your support and friendship.
While I don't think I can move forward without continuing to acknowledge that cancer will come back and kill me - with no warning or advanced notice I am trying to put myself in more of a recovery mindset in my head.
November will be the 2 year anniversary of my diagnosis
September will be the 12 month anniversary of my cancer surgery
And close follows my 12 month anniversary with flesh eating bacterial staff infection hitting - right after release from the hospital and the tumor removal
So we are approaching the 2 year survival Mark from day of diagnosis
And justifiably all involved thinking that I would be dead within 30 days as the massive stage 4 / end stage cancer had spread to the lymph nodes and from a medical standpoint nobody could understand why I was still alive
The radical course of platinum based chemotherapy and heavy duty radiation treatments continued for 6 months at a highly accelerated rate of treatment - dosage load and visit cycle
Again nobody expected me to complete the course of treatment - that the cancer would kill me any day if the treatment did not (medical impossibility they say - I am called a unicorn or a white whale as the pool of survivors in known history is 1 - just me alone)
The team wants me to have a colonoscopy / endoscopy to confirm that things look okay internally prior to them pushing for and signing off on or scheduling the ostomey reversal surgical procedure
I truly badly need and desire this and believe it's the next crucial step in my recovery program
So in less than 2 weeks I get scoped and if most of the team is pleased I push hard for the reversal procedure to be scheduled as quickly as possible
Every one is on board except for the surgeon who has been a bit difficult and perhaps over cautious (having said that I firmly believe I would be dead if not for his skill on the table)
My great desire is to face the two year diagnosis anniversary Mark being able to use a toilet again and have a bowel movement / not a bag filling event
This would to me make me intact and whole again - and I could fully focus on a more advanced and complete but difficult physical therapy recovery program and gain some strength and stamina back - learn to walk right again on my legs which are essentially non functional from the knees down
This will not be fun - I am advised it will be beyond hard and will greatly increase the pain load for quite some time
But once physical therapy begins to pay off I hope to be able to walk or drive or even work again for hours at a time
And hopefully then we can deal with getting the pain and neuropathy under control and we can back off the pain meds and fine some other way I can function
This journey has been hard as many of you know who have followed these posts
This thread has been difficult for me to complete.
But when I started this ride and so many of you agreed to stay with me to the end I promised to keep your informed and in the loop
So maybe I can put the ferrymans token back in my pocket and put off that ferry ride for awhile - and have some brief time frame of more normal function and a return to myself / the me that has been gone for so long
Thank you
Mike
0
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I don't often respond to your posts. I do actively search you out when ever I have time to think about you.
You are an inspiration sir. Showing true American grit against an unwaivering foe.
Thank you for the time and effort you put into your posts here. I can't imagine what you have and are going though. Keep fighting. Keep winning. We are all pulling for you.0 -
Cmon mike keep on keeping on ! Ros 0 -
Still think about you quite often Mike. Continue to send positive thoughts and Prayers your way. Hang tough Brother.
-Ken-0 -
Give it your best; my wife has advanced cancer and it is a struggle for all involved. 0 -
quote:Originally posted by joshmb1982
I don't often respond to your posts. I do actively search you out when ever I have time to think about you.
You are an inspiration sir. Showing true American grit against an unwaivering foe.
Thank you for the time and effort you put into your posts here. I can't imagine what you have and are going though. Keep fighting. Keep winning. We are all pulling for you.
My sentiments exactly. mrmike08075, you are an inspiration, thank you.0 -
So sometimes you win some - sometimes you lose some
So Thursday I did my physical therapy recovery program thing with the great former marine female specialist
And they have been letting me push the envelope somewhat
The last previous session and this session they were pleased somewhat as I was sweating noticeably - since the chemo my sweat glands and sweat production had not been producing or functioning correctly
This was a good sign - one more system returning to function
I had not thought a lot about what sweating does for the body other than function as a cooling system - but forgetting that it also acted as a removal system to flush out certain substances from the body
They cut me off a little early at pt - as along with the sweating I had pushed myself into an increase in pain and vertigo
Early this morning I began to experience muscle cramps below the knees - which when combined with my intractable high level persistent neuropathy caused quite a spike in pain - a pain event
Later I had the calf muscles lock up and seize off and on - making walking or sleeping rather hard
So I called my primary care doc and described the issue - they said go to the emergency room - this is not normal and the pain is getting out of hand
In the emergency room they drew blood and discovered severe potassium and magnesium deficiencies which they believe triggered the cramping and seizures
So I am stuck here in the hospital for a few days - and they accessed my port and gave me some serious iv pain meds
Also lack of this material can lead to blood pressure issues and cardiac concerns so they wired me up to a portable heart monitor
But it looks like I will be fine - but my push to recover and rebuild while working well also had a negative secondary effect
Again thanks all it looks like they can buff me up and things will be okay
But I did not want or need to go through this Dante's inferno like groundhog day experience again
Mike0 -
Do not rush the reversal surgery, Mike.
We did, and it turns out the J-Pouch was not 100% sealed. I went partially septic and permanently lost the ability of reversal.
I your surgeon is dragging his feet, regardless of how good he is, consider the possibilities that: 1. He is reluctant for a good reason, or 2: He has doubts and even if he is good, may not be the man for this job.
Do you have the ability to get a consult? If so, I would recommend seeing if you can get a consulting appointment at The Cleveland Clinic. I was fortunate enough to have a consultation with Dr. Tracy Hull at their main campus (You can google her. She is one of, if not the best in the field). The hope was to retain the pouch, but she took one look at me and an enhanced X-Ray and cleared a surgery slot within 3 days in a schedule that was booked out 3 months.
My local surgeon was supposed to have been the best in the Northwest, and while my process was very disappointing, I have no reason to doubt that he was. He was an apprentice, however, when compared to those that practice at the Cleveland Clinic.
I wish you luck on your reversal. Living with a crap-pouch is not the end of the world though, and, as you have demonstrated more that most and way more than I can even comprehend, a person with the right mind-set can do almost anything.
All the best,
Don0 -
Don,
Every member of the team - all the doctors involved including oncology and gastrointestinal have been reviewing the labs and blood work and ultrasounds and CT scans and pet scans and are in agreement that I have met every standard or reached and maintained any goals assigned and that I am okay for the reversal procedure at the one year mark
The surgeon is brilliant - I firmly believe in him and he would be my first choice to do additional procedures - his worry seems to center on the cancer returning and that having had the reversal would mean complications or difficulties in keeping me alive
Other doctors have suggested that it's time for me to get a second opinion or locate a new to me surgeon who will do the reversal
I hear your advice and experience - I listen and appreciate it - it means more to me than you might believe
I cannot and will not spend the rest of my life / however much time that may be waiting for the cancer to come back or saying what if the cancer comes back
It will be back and will kill me - I have made my peace with that - so I want / need to move forward
I am still in the fight and do listen to the doctors
I hope that I have communicated how I feel correctly and that you guys understand - that nobody is offended or does not know how important their input and support here on GB has been to me
Mike0
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