So, after reading a great article from one of my many colon cancer sights on Facebook - this one happened to be a great post by Julie Yip-Willams about how her life and illness with colon cancer will be published posthumus by Random-house; Her words hit close to home.
When I was first diagnosed, I refused to look at my odds Weird, I know. But, really - why look? It won't change anything... it won't change the outcome, it won't improve my overall mood to know that I have a 20% chance of dying from this. So - then today I thought - what are my chances of dying of something ELSE I do?
Like Scuba? Yeah, 1 in 34,400 (.003%).
OK, how about skydiving? not that *I* do that... 1 in 101,083 (.001%).
Hum...swimming? 1 in 1 Million (.0001%)
driving a car? 1 in 6,700 (.014%)
Chances that I'll even GET colon cancer at my age? .5%
How very scary is THAT number? now of that .5% of the world that managed to hit the odds.. I now have a 63% chance of survival rating at 5 years... again, another scary statistic.
Is it realistic... sure, I'm sure it is. But I'm a STRONG person... I was healthy before this *(relatively) and continue to be healthy throughout this..So, I chose to NOT look at any sort of statistics - well, really before today in depth.
Now that I look at them I get a little shaky as those odds are scary - I'm glad I'm on the positive side of them however!
I did also have someone share a video of a gal with Cystic Fibrosis and her positive view on death... I'm so glad that my folks have always talked about death opening and always with "I've lived a good life, don't cry for me when I'm gone" attitude.
Not that we would be able to do that, but we would definitely know that they knew they had a good life and enjoyed it fully. Bumps in the road and all.
Their attitudes have helped me know that it's just "life" and part of life is death... knowing living on a farm that if a calf was sick, odds are it would die... and dad would also tell us not to make friends with that calf or that calf as their names were "deep freeze". Ha! We also had pigs... can I just tell you I would be cleaning their super stinky pig pens and telling them... "can't wait until you are bacon!" LOL.
People are different.. we'll be sad, but I do have faith that I will see them again in heaven. I was raised Mormon for those that don't know (only a few of you reading are not my family, I'm sure!). Anyway, that part has always stuck with me. Yes, I think I will be able to see my family in heaven, that I will even see the wee baby I lost between the two girls (it was a very early pregnancy, but still hurt, the minute you see that (in my case faint - should have been my first hint) line on the test, you make plans, your hopes are there for that baby to be).
I've always just sort of bounced through things without much of a thought... C-section for a very sick little preemie? yeah... do what you have to just make sure she's OK. Keep her in until you know she's got a better chance of survival without killing me. OK. NICU for 3 weeks. OK. What's next? Keep moving forward.
So... reoccurance... scares me.... I don't think there are any statistics for that, but you have to figure my percentage of being alive for 5 years is 63% that would give me the balance to be in the recurrence factor - so 37% chance of recurrence and/or death? AND where it reoccurs will have a huge bearing on what your chances are - in the colon? About the same as it was before based on the stages... if this crap spreads anywhere else? Well, then, game on. It will be a whole other world. How's that for scary reality checks? Yeah... this is why statistics are bad. At least for my brain and my emotions.
THEN we get into the guilt factors... I was diagnosed the very same day that my SIL was diagnosed with metastatic breast cancer. What are the odds? What a shit deal for the both of us! Part of it is good - we can both relate to the chemo, the medical talk... the whole "I'm too tired to function" part. I'm glad I chose to go forward with my IV chemo. I hear what L faces with hers and her regime is what I could have been on... two weeks of oral chemo, one week off, rinse and repeat.
Why didn't I do the oral? Well, I would have to have a port regardless as the Oxaliplatin is a horrible drug for IV's - it has the potential to actually turn your veins black. Yeah, welcome to the choice to poison your body in hopes of killing all the bad crap without a) killing yourself or b) doing more damage than good. Fun stuff, eh? These are the choices were are given... so you want poison A with this huge laundry list of side affects or B with similar side affects but with the added bonus of xyz? Yeah... I chose to go with the IV pump for selfish reasons - it would only be 2 days and would come with less gastrointestinal issues... I figure my intestines have already faced enough trauma and honestly diarrhea scares me with a bag. I actually didn't avoid that at all either.. sigh. So... I'm 1 day of Oxaliplatin infusion over a 2 hour period - then 46 hours on a pump at home. Handy dandy pump... the pig. It pumps every few minutes and sort of squeal when it's doing it's business... I have adjusted. I now put it in a nest of blankets to the side of the bed and put another pillow over it (one under as well) and I can barely hear it now... but still wear earplugs to drift off...
Back to the guilt factors... I feel guilty that I'm doing good through this. That's not to say there are no symptoms, but what I have is easy to work around.. I hear that she's sleeping a lot... way more than me and for way longer.. I wonder now that I'm musing over this if this is due to her meds being for two weeks? That could very well be as I only really have three days of actively pumping crap in, then I get the remainder of that two weeks with nothing more being introduced.
I feel guilty because L is ALWAYS chipper and cheerful no matter what!! Every time I talk to her, she is always up beat and doing great! Why does this make me feel guilty? Because I feel like a fraud. I will put a smile on 99% of the time.. even when I feel like sh*t warmed over... I'm sure she's doing the same... but I feel guilty because I think in the back of my mind that I'm now what they would consider NED - No Evidence of Disease. as of my surgery they claim there is nothing there... that I'm just taking chemo as a "mop up" effort to get anything that may be lurking... and I know L is Stage 4 - already metastasized.... I know that's not a death sentence after seeing a ton of folks on my groups who are stage 4, but I know for her it could mean a lifetime of chemo and a lifetime of treatments, surgeries and changes to her life. That makes me sad for her, and makes me feel guilty that I'm not having to face that.
Survivor's guilt? Guilt because I kept my hair - although thinning it's really all still there. It's a weird feeling... feeling guilty for feeling healthy. I see folks at the cancer center who are about my age who look like they are 90 - really... one man came to get his wife and I was thinking it was his mother, she was so thin and frail... nope, his wife. Scary stuff this cancer.
.. don't get me wrong, I'm super grateful that I'm feeling like I do... and I do know it could change at the drop of the hat. I'm 1/3 of the way through and as of tomorrow I will be starting into the 1/2 way point... 3 of 6 treatments... then I get scanned every three months for a bit... then it goes to every year... then once I get to 5 years who knows. Maybe every three years? I haven't gotten to that part of the thinking yet... just get to December, stay healthy while getting to the end of treatments... then schedule the reversal surgery.
The reversal surgery... that's another whole nightmare thought process of not having a rectum to speak of anymore... how on earth will this work??? Will this work?? Will I be incontinent? Will I be able to control myself or be limited to eating only when I know I will be close to a toilet? I can't imagine doing what some of these ladies do - they don't eat all day. I can do a lot.. but not eat all day? Nope, not ever. Even when on liquid diet I was consuming calories. I do have some of that left... I guess I could revert to that.... it did constipate me... maybe that would be the trick? LOL
The thoughts that have to flow through now are just weird. but again, it's life. It's my life. It's a mess... but it's mine and we'll work around it.
So, now that I have scared the sh*t out of all of you... know that really I'm OK, these are fleeting thoughts through my pea brain.... and I haven't been as sick as I was that first treatment where I honestly thought "what the h*ll was I thinking signing up for this????"
Yeah, that's not happened again. Maybe it's taking meds right, maybe it's just knowing I will be tired and nauseous and I take THOSE the minute my stomach feels "off" now. I don't play with that feeling anymore! I don't want to look at the TV and think things look like they are "oozing" instead of just juicey - ha!
Floating on the pretzel as my queen chair was dead, dead, dead. I didn't have the energy to blow up a new one.
I couldn't see CRAP in the sunshine! I didn't get any other pictures, try as I might and even with a water proof case.
What brought this on? Discussions with everyone about how HOT it is and me thinking.....nooooo, it's FALL. Well der, I stay in the house 99% of the time. So yeah it was time to get my butt out of slug mode.
I did about 10 (hahahaha more like 5) minutes of water aerobics type moves in the deep end. Mostly bicycle and arms swishing on the sides but it was something 😄
Audrey did fine and honest it was change day and I had been procrastinating, so I got out, got showered changed and am ready for bed! Ha! Yep. My life is sooo thrilling.
Well it's amazing what happens when you take your meds the RIGHT way! Ha!
I took the steroids two per day for the three days and really the change is amazing.
I'm still tired don't get me wrong but it's NOT the emotional tired of "what the hell was I thinking doing chemo" tired.
I made it to Ikea - granted just in and out the back door and no further. No wandering. Just in and out. Then to the pizza place that we LOVE there near Ikea. Antico-Pizza Napoletana. Telling you, it's like being back in Italy for a minute. I wanted spicy pizza as my mouth feels a bit "off" and fuzzy. So we got the hot pepper one. Yum!! Butch was cute. He looked at the smaller pizza and said "that's not enough". Yeah, it was. My tummy doesn't hold much anymore and two small pieces was plenty for me! They were quite happy with their reminding pieces. :)
I then slept most of the way home - zzzzz yeah. Tired but not exhausted.
Tried to eat my ice cream (well really frozen custard) from Freddie's again. Nope. Not happening yet. Still way too tingly in the mouth for that!! Ha!
Had lots of diarrhea that day. Not sure if it's the chemo or the pizza but as the day(s) wore on I think it's the chemo. Ok can deal with that.
Monday rolled around and I'm still tired but again NOT exhausted. A little weaker than normal but OK. Went to physical therapy to get some exercises to strengthen the pelvic floor. They seem easy enough.
They did mess up my appointment and put me in the Pavilion instead of out by my house. OK. Who cares. I made it finally. :)
Then Elizabeth and I headed to Moms house to drop off Linda's info and get her car she had left there the day prior. We had a nice visit with them and Linda is feeling much better - yay!!
I had thoughts about going to the Fair but honestly just didn't want to go. Next year maybe 😜
Right now the only complaint I really have is tingling in my tongue and lips when eating cold things or using metal utensils. It's interesting. I did power through that custard last night and honestly had my tongue go a bit rogue in me and be useless for a bit. It was a tiny bit disconcerting as I couldn't talk right but it passed. Yeah, yeah, yeah don't do that again. I get it. It was soooo good though. Worth the weird feelings 😄
Rough spots inside the mouth are there still. No sores yet. Maybe I'll avoid those? I've moved to a soft toothbrush when I start getting "rough" to be more gentle with the skin. Hopefully that will help.
Nausea was at bay the whole time - had a minute of nausea for just a second then it went away. Which is bad because I just want to eat and eat and eat. While trying to lose weight or maintain that's not good.
My eyes are seriously taking a daily hit too. Blurry like sleepy eyes. 😳 oh well it's livable. Oh. And my nose. I feel like the lining is wonky. Not quite a bloody nose but in the verges of getting one. Dry and building up yuck. Bloody boogers. Gross eh?
The BEST news is the back pain is gone!! Yep. I use the milkweed balm the first few days and it lessened and is at bay for now! Yay!!
So. 6 days out and feeling pretty darn good. Hopefully my immune system is holding steady and all is well in that front. To be honest. I'm confident I WAS super healthy before this and will be able to tolerate this while thing well throughout. That first week was hopefully a fluke due to how I messed up the steroids. 😄