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Cancer treatment: new status update
mrmike08075
Member Posts: 10,998 ✭✭✭
I am finished with the 1st round of targeted radiation therapy treatment.
I am finished with the 1st round of platinum based chemotherapy treatment (both oral medication and infusions).
Most - the majority of patiants / recipients do not survive this particular course of treatment - regimen of therapy.
The combination of the very high dosage treatment regimen and the nasty advanced persistent class III rectal - lower bowel cancer - tumorous growth make for a high rate of mortality - most often fatal.
While I have a documented incredible resistance to / tolerance of pain and an extremely robust constitution combined with an extraordinary immune system the treatment had realy begun to destroy my ability to function and resist and cope and maintain.
On Friday morning they did blood draws and labs (6 vials) and the results to me were alarming. Many of my important numbers and levels had dropped quite a bit from the last series of tests 2 and 4 weeks ago...
White cell count and platelet count nose dived and the rate at which my body was cleansing itself of toxins had slowed by half. Potassium and iron levels suffered greatly and will require prescription supplements and infusions - injections to try to elevate or restore.
The neuropathy - nerve pain in the legs - below the knee - especially in the feet has rapidly progressed - worsened by an order of magnitude. It makes walking difficult and greatly interferes with my sleep cycle. My current high level - combo of pain meds (maintenance and breakthrough) do little or nothing to alleviate it. I may have to take one of these meds that they prescribe to diabetics like lyrica to combat the damage and it may take up to a year to return to baseline.
I should get a break - another 4 or 5 weeks to recover and to try to halt my decline - stabilize my condition - improve my numbers.
I have to keep visiting the oncology ward for fluids and vital checks twice a week for now - saline and aloxi and glucose and steroids - possibly some cortisone.
I am not dead - I am expected to survive in the short term - I am expected to improve and recover in many regards. I am instructed to gradually increase my fluid intake - drink more / double my consumption of water so I can stop needing to get my fluids - saline through my port via infusion.
There will be several scans - CT / mri / pet with contrast taken over the course of 10 days to allow the team to evaluate my progress and to identify how much we have shrunk the tumor - diminished the mass.
The team and the surgeon will decide if I am ready for surgery or if I have to have additional courses of treatment starting with - most likely including another round of the targeted radiation treatments.
Even assuming things have gone well that means surgery - it's not an easy procedure - and will require a post operative recovery period of some weeks - and the whole thing scares me.
Again I am alive - I was supposed to be dead by now.
Again my lab numbers have dropped but are still considered miraculously high - they don't understand why I am not dead.
Again I managed to avoid being admitted to and having to stay in the hospital - the strong odds indicated that would be impossible.
Again I retained my hair and teeth. I had some small clumps of hair fall out at the end but that seems to have stopped. I was bleeding from the gums but that seems to have stopped. My color vision seems to be working again. All much better and much quicker than possible.
I now weigh less than 200 lbs - it disappoints me - I tried very hard to maintain my weight above 200 lbs but was not able to do so. The team however feel that were i am at and how I have coped is nothing short of amazing.
I did try to eat and drink and exercise last week and thought I was doing ok but I must have pushed things to hard - I ended up being violently ill Saturday night - horrible debilitating abdominal cramps and pain - uncontrollable powerful vomiting - elimination issues and related difficulties. I was unable to sleep or function and spent Sunday immobilized - asleep on the couch - mostly non functional unable to eat or drink (I will have to be more careful and ramp up my recovery more gradually - I stupidly allowed my pride and my stubborn streak to impact my health).
I want to be able to cook for the girls - to take care of the animals - to do the laundry and some light household chores. I want to spend time in the backyard with the animals. I want to clean up and fire up all 3 grills on the covered porch - to start the season right. I want to spend more time interacting with Makaila and makenzie and pull my weight instead of being a burden. I want to work on some project guns in the garage and in the basement workshop. I want to try to use the little ride on lawn mower. I want to be able to do more volunteer work on the pediatric oncology ward and to begin to do needful things for the children again. I want to do some reading and some crossword puzzles. At some point I would like to spend a long weekend on Marthas Vineyard and help get the cabin ready for use - the Dodge pick up and the motorcycles ready to go. If I do a little each day and am careful I can pull more of my weight and be less of a burden and try to get back my man card and begin taking care of the girls again.
Sorry for the lengthy post - sorry for my periodic absences - sorry for being irritable and short with people here - sorry to burden everyone with my complaints and whining.
Please feel free to offer advice or tell me I am an idiot or to provide suggestions - feedback - opinions - anecdotes - etc.
Mike
I am finished with the 1st round of platinum based chemotherapy treatment (both oral medication and infusions).
Most - the majority of patiants / recipients do not survive this particular course of treatment - regimen of therapy.
The combination of the very high dosage treatment regimen and the nasty advanced persistent class III rectal - lower bowel cancer - tumorous growth make for a high rate of mortality - most often fatal.
While I have a documented incredible resistance to / tolerance of pain and an extremely robust constitution combined with an extraordinary immune system the treatment had realy begun to destroy my ability to function and resist and cope and maintain.
On Friday morning they did blood draws and labs (6 vials) and the results to me were alarming. Many of my important numbers and levels had dropped quite a bit from the last series of tests 2 and 4 weeks ago...
White cell count and platelet count nose dived and the rate at which my body was cleansing itself of toxins had slowed by half. Potassium and iron levels suffered greatly and will require prescription supplements and infusions - injections to try to elevate or restore.
The neuropathy - nerve pain in the legs - below the knee - especially in the feet has rapidly progressed - worsened by an order of magnitude. It makes walking difficult and greatly interferes with my sleep cycle. My current high level - combo of pain meds (maintenance and breakthrough) do little or nothing to alleviate it. I may have to take one of these meds that they prescribe to diabetics like lyrica to combat the damage and it may take up to a year to return to baseline.
I should get a break - another 4 or 5 weeks to recover and to try to halt my decline - stabilize my condition - improve my numbers.
I have to keep visiting the oncology ward for fluids and vital checks twice a week for now - saline and aloxi and glucose and steroids - possibly some cortisone.
I am not dead - I am expected to survive in the short term - I am expected to improve and recover in many regards. I am instructed to gradually increase my fluid intake - drink more / double my consumption of water so I can stop needing to get my fluids - saline through my port via infusion.
There will be several scans - CT / mri / pet with contrast taken over the course of 10 days to allow the team to evaluate my progress and to identify how much we have shrunk the tumor - diminished the mass.
The team and the surgeon will decide if I am ready for surgery or if I have to have additional courses of treatment starting with - most likely including another round of the targeted radiation treatments.
Even assuming things have gone well that means surgery - it's not an easy procedure - and will require a post operative recovery period of some weeks - and the whole thing scares me.
Again I am alive - I was supposed to be dead by now.
Again my lab numbers have dropped but are still considered miraculously high - they don't understand why I am not dead.
Again I managed to avoid being admitted to and having to stay in the hospital - the strong odds indicated that would be impossible.
Again I retained my hair and teeth. I had some small clumps of hair fall out at the end but that seems to have stopped. I was bleeding from the gums but that seems to have stopped. My color vision seems to be working again. All much better and much quicker than possible.
I now weigh less than 200 lbs - it disappoints me - I tried very hard to maintain my weight above 200 lbs but was not able to do so. The team however feel that were i am at and how I have coped is nothing short of amazing.
I did try to eat and drink and exercise last week and thought I was doing ok but I must have pushed things to hard - I ended up being violently ill Saturday night - horrible debilitating abdominal cramps and pain - uncontrollable powerful vomiting - elimination issues and related difficulties. I was unable to sleep or function and spent Sunday immobilized - asleep on the couch - mostly non functional unable to eat or drink (I will have to be more careful and ramp up my recovery more gradually - I stupidly allowed my pride and my stubborn streak to impact my health).
I want to be able to cook for the girls - to take care of the animals - to do the laundry and some light household chores. I want to spend time in the backyard with the animals. I want to clean up and fire up all 3 grills on the covered porch - to start the season right. I want to spend more time interacting with Makaila and makenzie and pull my weight instead of being a burden. I want to work on some project guns in the garage and in the basement workshop. I want to try to use the little ride on lawn mower. I want to be able to do more volunteer work on the pediatric oncology ward and to begin to do needful things for the children again. I want to do some reading and some crossword puzzles. At some point I would like to spend a long weekend on Marthas Vineyard and help get the cabin ready for use - the Dodge pick up and the motorcycles ready to go. If I do a little each day and am careful I can pull more of my weight and be less of a burden and try to get back my man card and begin taking care of the girls again.
Sorry for the lengthy post - sorry for my periodic absences - sorry for being irritable and short with people here - sorry to burden everyone with my complaints and whining.
Please feel free to offer advice or tell me I am an idiot or to provide suggestions - feedback - opinions - anecdotes - etc.
Mike
Comments
Prayers still coming from here.
KC
I generally don't respond to your threads in any depth of a reply because words don't come easily for me in situations like this. I Lost my Father earlier in life, and was scorned by some of my family because I didn't show much outward remorse for his loss. Pain and hurt in such situations are feelings that are only dealt with and understood by the person who holds those feelings, and IMO, should never be judged by others. However, in your situation, and Nords, I read your posts and struggle to convey my feelings on the daily struggles that you face.
I realize that no words of consolation or support will change where you, or Richard are at, but I still wish you both the best and pray for you everyday.
Your community activities at the hospital are so far and above, it brings tears to my eyes, and will be remembered for by many..
I wish you the best my friend, and hope whatever comes for you is easy..[:)]
no words can really could express how much you have done for so many and for sharing your inner thoughts and daily life with us
I can only offer up my prayers and best thoughts for you
you never need to apologize for any of your actions .
its easy to type but your the one fighting the battle keep it up and really amaze the doctors when you walk out cancer free ,
for what its worth we are all pulling for you and Nord , along with all those fighting the battle for there life
Take some time to build yourself back up. Do what you can, but if a nap is what you can do, do that.
You said it all: You are alive.
Be well.
You just keep on keepin' on, Mike! Get yourself better and then you can spend the rest of your life caring for others, let them care for you for a little while.
Well said! +1
You just keep on keepin' on, Mike! Get yourself better and then you can spend the rest of your life caring for others, let them care for you for a little while.
+2
While it may provide some satisfaction for you to continue to do the chores you place in front of you, you only have one job right now and that is to heal. Complete the job of fighting off this cancer and then worry about the other. Prayers continue.
Most folks would settle for just one.
You've hit the Trifecta! Keep up the Good Work!
Every time the labs come back my immune system and white cell count have dropped - the last test showed a pronounced decline...
I do not have the energy reserves to fight off disease or infection at this point - it would kill me...
Seeing as I spend a lot of time at the hospital - a place full of sick people - I worry about exposure to folks who are ill...
Being sick Saturday night really knocked me on my *...
The hours of prolonged severe nausea and intense vomiting took a lot out of me - depleted my reserves...
I am still exhausted and limited today - have no energy and cannot eat - bad nausea...
I managed some cheese and crackers late last night and am hoping to keep it down - I need to be able to eat and drink (even if it's only a few small snacks each day)...
I appear to still be highly susceptible to setbacks and need to be hyper cautious in my attempts at recovery...
Tuesday I get fluids and antinausea drugs - I get out of the house for a few hours - usually afterwards I feel somewhat better or enthusiastic and am able to eat more or be a little active even though I will run out of energy...
It's frustrating.
Mike
I was diagnosed with Leukemia 10 years ago! 7 years of chemo later I had a Bone Marrow Transplant 27Feb2014 so I know of some of the things you describe real well. One of the pre-cursors to the BMT was TBI (total body irradiation) and heavy chemo to kill my immune system/bone marrow. I know the concerns about infection and blood counts and how they are trending. It was 6 months before I could visit and hold my Grand daughter that was born during my 30 day hospital stay. And only then with a surgical mask for both of us.
Thru everything I have maintained a positive/can do attitude but the
'new normals' the Drs warned be about took quite a bit of adjustment. Were it not for the help/love/guidance from my wife that first six months after the BMT I know that I would not have done as well as I have. As a matter of fact I re-named her the WARDEN as I have always
pushed the rules a little too far and she wouldn't let me.
You have my continued prayers and positive thoughts from here in Va. Keep that positive attitude! Acknowledge that there is a problem but don't let it rule you! Pay attention to what your body is telling you and adjust accordingly.
To get where you are and to walk where you have walked takes a giant of a man. You are that and so much more! Perhaps your humility won't allow you to see it but we who care are well aware.
LIVE!
He has obviously taken you in his hands.
Keep posting.
You are in my thoughts and Prayers Brother.
-Ken-
I hope that is the case for you. All 5 plus another 1 year later were on my head and neck. They were a piece of cake compared to everything else.
Another thing i pray for you is your new normal will not be bad.
Prayers asked for you and yours. David
Best wishes to you
I have taken my pain meds (in fact some extra) and am going to try to lay down for awhile...
My damaged ribs are giving me grief - my abdominal muscles still hurt - I am nauseous and light headed - my feet don't work and the neuropathy is off the chart...
Hope that I can get a few hours of rest or even some sleep.
Tuesday I get saline and aloxi for nausea and some steroids and I hope that bolsters me enough to handle some food and drink...
I have not eaten today and don't think I will do so overnight and drinking has been difficult.
I just want to make and maintain some progress - the vomiting session Saturday into Sunday was pretty bad and has left me drained and inoperable...
May set the alarm for 4 hours and take an additional breakthrough pain med and some benadryl...
Have to be at the hospital before 9am so with my luck sleep will come around 7am and be interrupted.
Sometimes doing poorly physically causes it's own emotional damage and can be tough to deal with...
Sometimes - much of the time I wish I was stronger or had more resolve.
I was unable to do anything at all this weekend and now matter how much I want to improve my wanting has not had an impact.
The pain I can deal with but I cannot prevent the vomiting and am left crippled and exhausted afterwards.
The animals were all quite upset - they are unhappy when I am bad off and it seems to disrupt there routines...
The girls have not been that happy either - Makaila says it will take time and not to expect instant or rapid improvement - she had just come home from work around midnight when I became ill - I don't like to see her cry and be the source of her pain.
There realy are no good answers right now.
Darks clouds today.
Mike
Nasty business this thing we call cancer. It attempts to kill us in so many ways. Deal with pain in one place and it pops up in another. Reduce a lesion and it sets up shop somewhere else.
I've seen it and so have you. We all respond to the attacks on our body in different ways. Sometimes the disease overwhelms and there's no fighting it. Other times the cancer gets the best of our minds and we simply give up. Then the pain. Another tool of this insidious disease as some of us will eventually choose death over the pain.
And then the few who refuse to give in. Perhaps rather than being cured of cancer they frustrate it to death. They simply refuse to choose the easy road.
Mike, I'm not one such as yourself. I've just been lucky. My kidneys were all but destroyed and my lymph system below the belt line totally failed. Somehow my kidneys have become at least functional and my wife works every day to re-teach my lymph system. It hasn't all been smooth. I woke up several weeks ago to things you might not recognize as legs and a huge inner tube around my midsection.
Mike, I broke down in tears. After all the work, here I was seemingly back at square one. So help me, my cancer was just waiting for us to give in, but we didn't. Joyce went to work on me with a vengeance. It hurt and hurt bad. It also worked and my lower body is showing a huge improvement.
The worst thing about this little episode? My doctors had no answers about the lymph problem. Their best advice was to elevate my legs and the problem wouldn't kill me. They were so wrong. This is exactly what kills. So help me, cancer looks for a niche to exploit. Had I allowed it, this would have been the key to my defeat.
Again, no advice from here. Just a gentle reminder that everything you do to live defeats the monster. Every time you beat even the smallest odds, you win. My thoughts and prayers are with you.
LIVE!