Been home just over a week "on the rebound" from the knock down beating I experienced.....most of my time has been spent simply sleeping....listening to my body and my spirit and doing what they are asking of me...
Finally off the antibiotics....was on high dose big guns and if you've ever been on antibiotics you know the GI "upset" side effects that come along with the treatment......I haven't been able to venture too far from a bathroom, especially during the first few days of being home......wasn't "Da Puke Monster" was his cousin "Shitty McShitster"......without going into too much graphic detail ...I will leave it to your imagination as to how I managed to lose 10 lbs in one week.
Finally started to feel some energy return by Friday and was able to for the first time in over 3 weeks get out for my morning sunrise walk.....didn't get so far...but got up and out. Needless to say it felt AMAZING!! Watching the sunrise, listening to the early morning sounds, looking at the light changing, breathing in the fresh air......reminded of how blessed I am to be surrounded by so much beauty and healing energy that is abundant in Hakipu'u.......if I am going to have to go through hell, how fortunate am I to live in heaven!!
Was up and out again Saturday morning but by the end of my walk was WIPED OUT! Had some banking/grocery/errands stuff to do....and you know how I like my independence so went out and got what needed to be done ....done.....guess I "over did it" a bit, by late afternoon was exhausted and started feeling the chills.....checked and temp was up over 99. F .....so had some flash backs of two weeks ago and got a little worried. Rode it out, couldn't take anything to prevent fever....because fever is sign of infection and if the infection is still hiding out in my system somewhere it would be good to know before Chemo on Monday. "De-stressed" a bit, took a nap and my temp came back down and stayed down through the night and has remained down through out today.
Biggest physical changes I been experiencing ....the numbness and tingling in my lips and tip of my tongue that I first noticed when I got sick 2 weeks back, are pretty much there all the time now.....thought is that it's a form of chemo toxicity peripheral neuropathy ....same same as what happened to my finger tips.....it should all hopefully go away a few weeks after all the chemo infusions are done.
Today is the first time I am having a real hard time walking. Not my feet like what is expected with the peripheral neuropathy but my knees...I first noticed it Friday when on my morning walk, tried take a small kine step up the sand and my knees gave out and bam I was down in a kneeling position....got up and finished my walk, didn't pay it too much mind.
This morning I got up and my left knee is barely supporting my weight....weird feeling...took me FOREVER to walk the "96 steps" across the yard to Terry and Nakoa's ....need my "Makai fix". Terry tried get me to take a driftwood cane to walk back home.....YEAH RIGHT?!?!?!? me with a cane....you know that pic of me hobbling through the yard would have wound up on facebook in no time flat...I'll be fighting that happening!! So just been a quiet day cruising on sofa.....a nice long vicodin induced nap....getting things ready for tomorrow. Will have to see what the doc thinks about the "knees thing".....I can't figure it out.
Finally off the antibiotics....was on high dose big guns and if you've ever been on antibiotics you know the GI "upset" side effects that come along with the treatment......I haven't been able to venture too far from a bathroom, especially during the first few days of being home......wasn't "Da Puke Monster" was his cousin "Shitty McShitster"......without going into too much graphic detail ...I will leave it to your imagination as to how I managed to lose 10 lbs in one week.
Finally started to feel some energy return by Friday and was able to for the first time in over 3 weeks get out for my morning sunrise walk.....didn't get so far...but got up and out. Needless to say it felt AMAZING!! Watching the sunrise, listening to the early morning sounds, looking at the light changing, breathing in the fresh air......reminded of how blessed I am to be surrounded by so much beauty and healing energy that is abundant in Hakipu'u.......if I am going to have to go through hell, how fortunate am I to live in heaven!!
Was up and out again Saturday morning but by the end of my walk was WIPED OUT! Had some banking/grocery/errands stuff to do....and you know how I like my independence so went out and got what needed to be done ....done.....guess I "over did it" a bit, by late afternoon was exhausted and started feeling the chills.....checked and temp was up over 99. F .....so had some flash backs of two weeks ago and got a little worried. Rode it out, couldn't take anything to prevent fever....because fever is sign of infection and if the infection is still hiding out in my system somewhere it would be good to know before Chemo on Monday. "De-stressed" a bit, took a nap and my temp came back down and stayed down through the night and has remained down through out today.
Biggest physical changes I been experiencing ....the numbness and tingling in my lips and tip of my tongue that I first noticed when I got sick 2 weeks back, are pretty much there all the time now.....thought is that it's a form of chemo toxicity peripheral neuropathy ....same same as what happened to my finger tips.....it should all hopefully go away a few weeks after all the chemo infusions are done.
Today is the first time I am having a real hard time walking. Not my feet like what is expected with the peripheral neuropathy but my knees...I first noticed it Friday when on my morning walk, tried take a small kine step up the sand and my knees gave out and bam I was down in a kneeling position....got up and finished my walk, didn't pay it too much mind.
This morning I got up and my left knee is barely supporting my weight....weird feeling...took me FOREVER to walk the "96 steps" across the yard to Terry and Nakoa's ....need my "Makai fix". Terry tried get me to take a driftwood cane to walk back home.....YEAH RIGHT?!?!?!? me with a cane....you know that pic of me hobbling through the yard would have wound up on facebook in no time flat...I'll be fighting that happening!! So just been a quiet day cruising on sofa.....a nice long vicodin induced nap....getting things ready for tomorrow. Will have to see what the doc thinks about the "knees thing".....I can't figure it out.
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So here we are "Chemo-Eve".....the night before ROUND 6....what could potentially be the last time I have chemotherapy infused into my body...... wish I could say I was "excited".....to be honest for the first time through all of this I am SCARED SHIT LESS.
This is a level of FEAR I have never known before......and I have done stuff in my life that evoked some levels of fear (rightfully so)...nothing like this.
It's how sick I got 2 weeks ago......how fast and hard that came on ......the reality that I was closer to death than I have ever been before.....I thought I had already done plenty of re-evaluating, re-defining and fine tuning since all of this started.....that was kids play compared to the thoughts, feelings, emotions, realities I have gone through in the past 2 weeks.
This is a level of FEAR I have never known before......and I have done stuff in my life that evoked some levels of fear (rightfully so)...nothing like this.
It's how sick I got 2 weeks ago......how fast and hard that came on ......the reality that I was closer to death than I have ever been before.....I thought I had already done plenty of re-evaluating, re-defining and fine tuning since all of this started.....that was kids play compared to the thoughts, feelings, emotions, realities I have gone through in the past 2 weeks.
This is the first time that I feel physically unprepared for chemo.....my mind and spirit are kinda almost there....but it's the fatigue, pain and weakness of my body that scares me most.
We knew this could happen....it's the cumulative effects of the chemo-therapies with the added assault of the infection 2 weeks ago.....my body is just beaten down.
We knew this could happen....it's the cumulative effects of the chemo-therapies with the added assault of the infection 2 weeks ago.....my body is just beaten down.
Folks will want to "celebrate" the day of "final chemo".......although glad to be at this point, there can be no celebrating for me.....remember the full effects of the chemo don't hit until a week after the infusion......the term "ticking time bomb" comes to mind. Then there is the few weeks of lingering fatigue that I have been told to expect to be worse than where I am at right now.
I keep saying - for sure lets plan for the worst, asking my doc to go through all the worst case scenarios, talk about what is "expected to happen"....hoping that in true form my body will do the complete opposite of what everyone "expects" it to do.....
I keep saying - for sure lets plan for the worst, asking my doc to go through all the worst case scenarios, talk about what is "expected to happen"....hoping that in true form my body will do the complete opposite of what everyone "expects" it to do.....
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FEAR:
(noun) a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid.
It is not a "fear of dying".....I am pretty sure I talked about that in my last blog.....the whole "dying thing" I am at peace with....if it is time for my "ticket to be pulled" so be it......I can move on ......no way do I mean I am ready to go.....there is still plenty I plan to do here.....but ultimately none of us have any control over "ticket pulling times"
The fear for me is the fear of the pain, the fear of the potential suffering, the fear of the abuse my already weak body will have to endure......sure some of it comes from having been in this situation with patients far too many times than I would like to remember......a lot of it is "fear of the unknown" , "fear of not being in control".........fear of everyone seeing me weak.......I know your thinking "that's a silly thought" ......but if you know me, you know the LAST THING I want anyone to think of me as is WEAK and the last thing I want anyone to see is me weak.
There are decisions that need to be made, thoughts that need to be worked out, a lot to process......
There are decisions that need to be made, thoughts that need to be worked out, a lot to process......
if things go into shitter real far do I want to be intubated/put on a ventilator?? What type of life saving measures do I want if it comes to that?? Who's going to be there if the shit hits the fan again?? Should I clean the house real good before going in to chemo - just in case I don't come right home?? Am I really as strong as I like to think I convince everyone else I am???
Looks like that last one is really going to be put to the test (as if it hasn't already) How "strong" am I really??? I have had the strength to make it this far.......do I have the strength to make it through.....what is real strength???
What I have to go on is the memories of the little warriors I have shared times with, the kids I have taken care of they knew real strength.
I have the stories of the cancer survivors I know, so many who have gone through so much, found the strength and courage to make it to "the other side"....the side called SURVIVOR.
Was perfect timing to have a phone conversation with one of my oldest and closest friends today, Johnny. He is someone I have always felt blessed to have in my life, someone I always looked up to and admired. He's my buddy who taught me to sail and with who I spent hours and hours sailing with on Lake Michigan back in my Chicago days....so many great memories and good times.....we were part of a group of friends that is hard to describe if you never saw us in person.....no one outside of our group will admit to it but they know there were a few years where we were the "Kings of Boys Town"!!!!
Looks like that last one is really going to be put to the test (as if it hasn't already) How "strong" am I really??? I have had the strength to make it this far.......do I have the strength to make it through.....what is real strength???
What I have to go on is the memories of the little warriors I have shared times with, the kids I have taken care of they knew real strength.
I have the stories of the cancer survivors I know, so many who have gone through so much, found the strength and courage to make it to "the other side"....the side called SURVIVOR.
Was perfect timing to have a phone conversation with one of my oldest and closest friends today, Johnny. He is someone I have always felt blessed to have in my life, someone I always looked up to and admired. He's my buddy who taught me to sail and with who I spent hours and hours sailing with on Lake Michigan back in my Chicago days....so many great memories and good times.....we were part of a group of friends that is hard to describe if you never saw us in person.....no one outside of our group will admit to it but they know there were a few years where we were the "Kings of Boys Town"!!!!
Johnny has been where I am right now ......he is a SURVIVOR! I hadn't realized until our conversation today how similar our "situations" are.....same diagnosis all the way right down to matching scars placed at biopsy sites and port placement sites.......
He has always been an inspiration to me , for years and years before I was diagnosed....and once I was diagnosed I have carried with me the thoughts of his fight, his battle, his victory and from that I have gotten plenty of strength when I needed it most.
Makes me small kine crazy that there is so much distance that separates us and that we have allowed so much time to pass with out being in the same place at the same time....but this is one of those friends that no matter how far or how long, they are always close by and when you do talk it is like you were just sitting at Starbucks yesterday talking story and sharing the crosswords.....
Makes me small kine crazy that there is so much distance that separates us and that we have allowed so much time to pass with out being in the same place at the same time....but this is one of those friends that no matter how far or how long, they are always close by and when you do talk it is like you were just sitting at Starbucks yesterday talking story and sharing the crosswords.....
One conversation and so much was put into perspective....definition of friendship, unconditional love, what is truly important in life......made me realize how much stress I have been putting on myself that is not necessary.
It is the kids and the survivors I know that have paved the way for me.....and it is my turn to walk that path so that in the future I can be there to help those that will follow behind me.....
FEAR.....yeah it's got a hold on me....and I have every right to be feeling it right now.....I have every right to be feeling anything I want right now.....I will acknowledge the fear BUT I will NOT allow it the power to take over
It is not unrealistic to acknowledge the need now to ramp up for battle......the battle is here and it is realistic to acknowledge the next few weeks things are probably going to get a whole lot worse before they get better....
I don't want and I don't need rainbows and sunshine shoved up my ass....this is the reality I have been dealt and it is a necessary process for me to face it , deal with it, battle with it so that I too will come out on the "other side" and join the ranks of "SURVIVOR"!
I do have and ARMY behind me supporting me, standing at my side and ready for get my back if needed....for that I am beyond grateful! The love, support, caring and generosity I have been shown over the last 4 months is astounding and words can not express the appreciation I have .....
I would truly be lost if not for all of the planning, physical/mental/emotional support, the talks, the notes, the phone calls, the emails, the generosity, the financial planning/advice, the meals, the checking in .......the list goes on and on......
Going to cut this one short....gotta get my "chemo-to-go bag" packed, Supah-P shirt and quilt my mom made me out and ready to go.....a good big glass of wine and some quiet time (this is me kidding myself that I am actually going to sleep tonight.....)
Tomorrow IS A BIG DAY.....and yes let's celebrate what will be the potentially final day Chemo gets put into my body......as my good friend Alan so wisely put it "FUCK BOB....ITS TIME TO MOVE ON"
A MILLION THANKS TO ALL OF YOU FOR YOUR CONTINUED CARING SUPPORT AND LOVE......IT WILL NEVER BE FORGOTTEN
Tomorrow IS A BIG DAY.....and yes let's celebrate what will be the potentially final day Chemo gets put into my body......as my good friend Alan so wisely put it "FUCK BOB....ITS TIME TO MOVE ON"
A MILLION THANKS TO ALL OF YOU FOR YOUR CONTINUED CARING SUPPORT AND LOVE......IT WILL NEVER BE FORGOTTEN
LOTS OF LOVE PEACE AND ALOHA TO YOU ALL~~P
One way to demystify something and make it less scary is to throw the curtain back and really look at it......It doesn't mean that you've given up.
It is a gift to really look at death as a way to AWAKEN TO LIFE......
hang in there warrior prince. healing thoughts and prayers coming your way. Big Hugs
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