Today was "port cath removal day". On Feb. 20, 2020, almost 1 year to the day that it had been installed.
It is hard to believe it has been a year and oh, what a fun a year it was (that is sarcasm).
I have heard from other cancer survivors it can be an emotional event and that held true for me. A significant piece of my cancer journey was on its way out. The port cath installation signified the beginning of treatments; today's procedure signifies the end. I do have a maintenance pill to take daily for several years but the hardest part of that is to not drop it in the sink or floor.
I stated often to family prior to today how the surgeon had to put me under to install the port cath; but, to remove it, I am awake and just laying there in chair. The thought of being awake totally wigs me out. I kept envisioning him pulling a slippery worm out of the dirt only the worm was the port & dirt was my skin.
Needless to say, it wasn't like that at all - not even a slippery slithery noise was heard as it was pulled out. I was fully numb and really did not feel much other than a little tug. The procedure took a full 30 minutes. I learned today the worry I carried the past year about it moving around was all for naught; as now I find out it was stitched into position. I was vocal about being scared and I kept waiting for that moment "it hurt". It never happened but then I had my mom holding my hand. Yes, yes. I am 46 years old and still need my Mom. She is a survivor and a pretty tough woman so I knew she could get me through this. And . . . my Mom gets a kick out of medical procedures. So to watch one up close and personal was my gift to her. Not sure the surgeon appreciated how intently she watched but it did assured for a nice stitch up job. LMAO
Going in, I had intended to take my port cath home with me. I mean, I did pay for it. I was going to put it in a jar and maybe break it out at Halloween parties.
But I didn't. Just shed a few more tears, I took a deep breath, collected my thoughts and left.
Bye little guy. Thanks for job you played in saving my life.
Because no two cancer experiences are the same, I am asking fellow cancer warriors and survivors following Pink Gravel to please speak up and respond to the following questions. If you know someone that may be interested in sharing as well, please share this post with them. I hope to collect several and post to this Pink Gravel Blog page and Facebook page in the next few weeks. First names will only be used if used at all.
Pink Gravel is giving you an opportunity to share a little bit about your cancer story on our platform. These stories will also provide a resource for those looking for ideas on how to help themselves or help support someone they know going through treatments.
Send a direct message to the Pink Gravel Facebook page, comment to this blog or if you prefer, send an email to firstname.lastname@example.org with your answers.
If you need a little help, here are my answers:
So if you saw the nice write up that my husband sent to The Mid South folks about how disappointed I was to miss the 2020 race due to chemo treatments a few days back; you will understand why I felt my bubble bust yet again. (BTW, The Mid South was formerly the Land Run 100 and it is a gravel race that has been held annually for several years out of Stillwater, OK. It is one of the premier gravel events of the season. I attended my first 2 years ago and have been hankering to go back ever since).
Below is my comment to Bobby Wintle's follow up video explaining the announcement further about how The Mid South was for 2021 becoming "The Incredibly Socially Distanced Mid South" For the safety of riders and the community, they decided to change up the event and ask those registered to ride their miles from home or a route that one of 8 area bike shops create. I totally understand why and probably the best move, but doesn't mean I have to be happy about it.
Anyway, here is my comment to their video post:
I will not lie, the email I received this morning dropped on me like bomb. (just ask my husband; I think I scared him ha!) If you had seen me, you would have thought I found out I have cancer. . . again. Yes, I was that distraught over this silly little event. It has taken some tears and time to fully digest and come to grips with this development. For personal reasons, like others as I am sure I am not the only one, attending THIS YEARS The Mid South event marked a mile stone for me. This was THE gravel event, I was MOST excited for since being told not to attend last years. I was so relieved when the deferrals were given for 2021. This morning, I was sad to see it semi-disappear. It took about 5.5 hours from first reading the news and an order of Dairy Queen cheese curds but I think I am ok now. I will survive - we all will survive - again as Covid KO's beloved event.
At this moment, I don't know where I will ride out of but I WILL RIDE my 50 miles somewhere that weekend. I encourage others to do the same and not turn to a complete sour grape as I almost did. And just so you are aware The Mid South - whether I am fortunate enough to catch Randy Randomizer eye(s) or not next year, I am getting a dang hug in 2022.
PS. . . I appreciate the video follow up. worth the effort as it helped ease the pain. #positivevibing #pinkgravel #pinklemonade
The Mid South replies:
Hey Amy, I know how much you wanted this. Needed it. That's what made this such a hard decisions. I want to commend you for your outlook. It shows how strong you really are. Out of all the people who could be cross about this decision, I know you'd be justified. Good on you for processing it and sharing it out. Please, please stay committed to your ride. Share it with us, but do it for you! I know this isn't our first choice, but I can say it's going to make cheering you into the finish line in 2022 that much more meaningful! Pack the cheese curds!
I share this because sometimes things don't go exactly how we plan or expect them too. No one plans to get cancer, but it happens and you have to just find a way to get
I was sitting in a big leather chair at the Cancer Center of Kansas receiving my first chemo treatment. It was a 4.5 hour process - mainly due to it being the first one of the series with additional instruction and prep. My husband and my Mom joined me as we sat at one end of the room that contained about 6-8 of these chairs. Each with a rolling IV pole hem. It was very surreal. I had known for a month that I would getting chemo, but here I sat actually "plugged in" via a port that had been implanted in my chest. Today, I still have that port. It is easy to find as a 1.5 inch scar marks the spot.
I get emotional thinking about that day. Will I still have these emotions two years from now? three? or four? I suspect yes. Especially if FB and my journal app continues to remind me of past posts. I laugh about those posts now as I remember when this all started, I said to my mom or maybe it was my siblings or husband how I was not going to be one of "those people" that overshares their cancer troubles or hashtag "insert cancer phrase here" on social media. Nor was I going to wear pink tees, bracelets and cancer ribbons. That stuff wasn't for me. I don't need to "advertise" my experience. No way was I doing that. But. . . here I am. . . writing on my Pink Gravel page.
While I eat those past words, I do know why my thought process changed. It wasn't accidental. And I know some may be disappointed that I failed to resist. Especially after scrolling past my posts. . . my long posts. I admit, it can be annoying; but those posts and shares do serve a purpose to the one fighting.
Now, I can only speak for myself. I learned those actions are not done for attention or a sympathy grab. (I actually don't handle attention too well, it makes me uncomfortable) I found that embracing cancer ribbons, quotes and hashtags helped get through it all and continues to be apart of my healing process. While my body was cut, injected with chemicals then blasted with radiation; my brain was left hanging trying to grasp my new physical weaknesses, side effects and challenges. All the same time, trying to remain calm and not freak out. I also did not want my family, my friends to freak out or feel sad about what I was going thru either. If you worry about me, then I worry more, then you worry more and so on. I found rallying behind cancer awareness, sharing stories, wearing pink and liking anything with a screw cancer vibe was a welcomed distraction for my brain and it is a fun way for others to show support . . . especially when limited due to Covid. These actions made my low moments shorter and less frequent which in turn helped keep the family spirits up too.
So a win, win.
And let's be real, who doesn't have fun rocking hot pink?
The following was posted by The Mid South team to their Instagram and Facebook accounts on January 5, 2021.
Very sweet of my husband write and very cool of The Mid South to publish. Gives me the feels every time I read it.
The Mid South writes:
This story was shared by Jon from Manhattan KS.
2020 has been a challenge is an amazing understatement! What a year it has been. Ours actually started Halloween 2019 when my wife, Amy was handed a real challenge. That is when she received her cancer diagnosis. After a little crying and hugging, I swear to God, the first words out of her mouth were "I'm not going to get my Bobby hug".
COVID-19 hit just as she was beginning chemotherapy and we were advised to stay home. This was a tough decision as we had so many friends competing and wanted to be there to support them.
As you can imagine the chemo and radiation were brutal, but she never lost her spirit or sense of humor, at least in public, even letting our girls paint her head like Easter eggs. Her energy was zapped and simple walks were as tough as a 50 mile ride in a Kansas wind storm.
The pictures attached are from the Virtual Solstice Quarantine Ride 100k in Beatrice Ne., her first ride just a few months after chemo and days after radiation. It was hot and extremely windy. We took it in 10 mile chunks and just kept pushing. SHE NEVER WALKED A SINGLE HILL!
While recovering, she realized there just wasn't a support group for active people recovering from cancer and wanting to get back into competition. Thus Pink Gravel was born. She created a foundation to support, sponsor and encourage those recovering and trying to get back up and running, riding, whatever. She finished 2020 off by providing SAG support at several events and even hosting her own, Just A Chill Ride with chili, cinnamon rolls and Lazy Horse Brewery beer for all who attended.
We deferred last year's Mid South entry, so we will be there with all of our Black Squirrel Cycling League friends representing the Pony Express Gravel Dash and Pink Gravel and ready to roll. And this year will be even more special when she rolls over that line.
Even if Bobby has to put on a hazmat suit, that girl deserves a hug!!!"
If you have cycling friends like mine, they have been posting their 2020 Strava, Garmin or Wahoo accomplishments the last couple days. It is truly impressive to see what others have done. 2000 miles. 6000 miles, 8000 miles, 10,000 miles! Wow! Congrats! Takes a lot of time on the seat and effort to rack up those miles.
Personally, it is a bit intimidating. Others have obviously spent more time riding than myself in 2020. Many legit reasons and some straight up lazy ones contributed to much less activity in comparison. If not careful, I could easily plunge into a downward spiral and be upset about my lack of activity.
My few hundred miles.
I wasn't about to share my stat for 2020. . . till the other day, when I was talking of the thousands of miles my friends had for 2020 and then turned to scoff at my own statistics, my sister said, "Hey, that's at least one mile a day." I don't know if she realizes the mental shift she just instilled.
A mile plus for each day. Humm. . . that is still not too shabby. Throw in cancer, Covid-19 restrictions, canceled events, weather, work, and remote schooling. Not bad at all. I can honestly say that a majority of those miles I collected was with my husband and great friends. Each has a good memory attached to it. 64 - Solstice Quarantine ride, 38 - Lazy Horse ride, 34 - Just a Chill ride, 100 miles of FHNT.
Taking a little time to reflect and appreciate those miles brings a smile. Good times.
So, if you are like me, intimidated by the miles you see being posted, instead of feeling bad for not doing more, embrace your miles. Feel proud you made the effort to get out. Think of how many didn't or couldn't.
It is still something and not nothing.
Cuz let's be real. 2020 sucked. So rejoice in the fact you didn't let your Strava account get deactivated due to 366 days of inactivity.
And that my friends, is positive vibing!
This is my post I made on American Cancer Society 50 Squats A Day December challenge FB page. It came about seeing people share their accomplishments of doing 10, 20, 50 or more squats in a day. This is apart of Pink Gravel's story and the role I hope it can play for others looking to be active in any capacity during or after the battle.
I am impressed by those who go above and beyond the 50 squats each day. I think it is awesome! If I was doing this a year ago, I'd be right with you. But someone decided I needed to fight some boob cancer this past year, so I am still trying to just be more active a bit more everyday till I can get a true routine back.
As I tell people about my cancer experience, I remind them of how in college there was something known as The Freshman 15; well, I found there is the Cancer 15. My weight gain came not during the treatments but after while the effects of the treatments were working themselves out of my system. Not to mention a pill I now take for the next 5 yrs which is known to enhance weight gain not make me run fast. (I know, right?)
So many days I wake up, making a conscious effort to choose that today will be that day that I REALLY will get back to being active. I sometimes even grit my teeth and look in the mirror at myself and say it out loud. "For real, Amy, today we are going to do it"
"But, but, but.... it is hard," says my body. "I already fought cancer now you want to do this?" My body is obviously not on the same page as my mind. Eventually, by evening, the mind is tired of fighting my body and says, "Ok, sit on the couch this evening, but tomorrow we try this again."
"Sure," my body says with fingers crossed.
That is where I have been for awhile now. I completed all chemo and radiation early May 2020 and slowly adding pounds. It made me sad inside. I have stopped beating myself up about it daily and have accepted it as a part of the cancer experience.
I am ready for a new chapter now. My come back. My cancer come back. And I really think this ACS challenge is where it starts. I can feel it in my thighs....literally.😁
So if you power out 50 squats in one go or sprinkle them throughout the day like me, you are all awesome!
50 squats is 50 squats.
Here we go, here we go, here we go now! It is December 2020! And today marks the beginning of a 50 squats a day challenge Pink Gravel signed up for. . . wait . . .what . . . 50 squats? What the heck??? But that will hurt?? Eegads!
Gotta start sometime and somewhere. But no worries, Pink Gravel will knock this out easy peasy lemon squeezy, right? It will get done but not look pretty. 🤪
These simple challenges, I believe, are a great ways to motivate and kickstart a good habit. If anything wakes the body up to accomplish more in a day, why not try it.
Pre cancer, last year in 2019, I was pretty active on my bike riding miles of gravel for fun and in events. Cancer treatments took my energy and gave me aches and pains; made it not fun to even walk at times. It was hard to accept. It took a change in mental attitude to not beat myself up for not being able to do things like I used too. I learned to accept my situation and not be so hard on myself. Roll 7 months forward to today. . . I now seem to have no problem with lounging around. My poor bike hasn't seen me in weeks. So, reasons are needed to get back in the saddle again for 2021.
On the back of that, Pink Gravel is going to host a challenge. A PG-13 Christmas Challenge. It will begin on December 13th and end 13 days later on December 25th! All that you have to do is for those 13 days, move for a full 13 minutes. That is it. Should be easy as you have all that decorating to do for Christmas, or shopping, or cooking or cleaning, right? An event for this has been created on the Pink Gravel Facebook page where you can join and share your daily progress during the challenge.
Plus, Pink Gravel may have a little finishers award for those that participate. (And no, it isn't the bike)
One reason Pink Gravel exists because cancer touches us all in some fashion. I think my family was groped by cancer - ha ha - my mom, my dad and myself as well as other family and friends. Sadly, not all have made it. So I make it a point to not shuffle my feet in sadness or wallow in my personal pity party. Doesn't mean I don't have those moments, I do. I just make a constant effort to keep them short as I want to enjoy life, cause you just never know.
Treatments and the side effect of those treatments for cancer can be as hard on the body as the disease itself if left alone. So while some get down and say we'll never find a cure; I say, we can for sure continue to improve how we treat cancers and that is good, too. Right?
Being that half of my battle occurred during Covid-19, I had to invent ways to stay out of a slump since I couldn't be around people. My personal touch on treating my cancer (especially during Covid-19 times) was - and still is - via humor, sharing my experience through activities and stories, and looking for positive ways to embrace what life throws at me - how I embrace cancer. Pink Gravel is an extension of that attitude.
On that note . . . surely there are a few Chiefs fans in this group. The pic is me embracing what was thrown at me. Artwork by my daughter.
I am just a 40 something married lady with kids who likes to ride gravel when life lets me. Just so happens I was called into the Cancer Club on October 31, 2019. Fought my fight with surgery, chemo, radiation, friends, family and lots of dark humor. I find sharing my experience helps me. Maybe it can help you.