The C-Club

I didn't want to join this..... but here I am.

Welcome. My formal first post here on substack. I will be transferring my CaringBridge posts in the next couple of months and share some reflective thoughts on what the hell the happened in the last year. Here we go…..

MARCH 21st 2022

The following post was a couple weeks from my emergency room visit, initial diagnosis, and first surgery on February 26th. My sisters and my husband Jeffry thought it was a good idea to have a place to share the news so that they didn’t have to repeat themselves and knowing my network of family, friends, and colleagues, they wanted them to know. Who knew that starting these updates, were going to be therapy and a creative outlet that I needed while being stuck in the hospital, at home recovering, and at the infusion clinic. I spent a lot of time in my thoughts and writing was release.

ORIGINAL POST

Wow, it has been a whirlwind the last couple of weeks.  First off, I want to thank all of you that have reached out to Jeffry and I; we've truly felt the love and feel lucky to have such a supportive community around us. . We decided to set up this site so that we can share updates throughout this next chapter with all of you.  Hopefully, this will be a place where we can give you all the significant progress that we will experience in the next couple of months.  We see the light at the end of this and want to be on a beach soaking the sun somewhere.  Hold us to that, OK?

Here's what happened.... (trigger warnings on some graphic descriptors! Also trying not to use a lot of medical terms, so forgive me to all my medical family and friends not using the correct terminology. Wanna keep it real). The following events started on Saturday, February 26th to today.

I've been having intermittent stomach pains for the last year.  My doctor and I blamed it on all the stress and anxieties that have built up in the last five to six years.  And had wanted to get this done the summer before, but you know, COVID, and this was definitely not a priority then. You know what I mean?  I'm sure you all can relate. . 

On Saturday, February 26th, I couldn't sleep at all and had major pain in my abdominal regions. Definitely a 10 on the pain scale. My face looked like that graphic they have in the hospital.  We went to the ER and they immediately did a CT scan where they found a mass in my intestine. They admitted me to the hospital for further assessment and decided to move my upper endoscopy and colonoscopy, which were actually scheduled for the following week, to Monday the 28th. The plan was then to do abdominal surgery to remove the blockage once they could take a good look at it.

In my CT scan, the docs were highly suspicious that the mass was cancerous but didn't know yet. Of course, this got both Jeffry and me super nervous. I had a day to prep for the colonoscopy (thank god I did that at the hospital as the toilet was right there, no stairs to maneuver), and I went on an IV along with an NG tube which, by the way, was the worst part of my hospital stay. NG stands for naso-gastric and they had to shove that thing down me to empty my stomach. I can't believe I was awake for that!

I had my colonoscopy/endoscopy that Monday, and the procedure found that the mass was definitely blocking my large intestine and preventing me from normal digestion. They also found other things that concerned them and were worth a biopsy. This procedure gave my doctors enough information to go forward with the surgery the next day.  That anticipation sucked, and I just wanted to get over with it. The doctors and nurses that took care of me at MHealth Fairview Edina were exceptional!  They kept me informed as much as possible, had empathy, and made sure I was comfortable and in high spirits—more than I could ask for in this unknown time.

I had laparoscopic abdominal surgery on Tuesday, March 1st. The surgical team was amazing and put me at ease even with all my anxiety.  I think they noticed that, so they gave me a lil more anesthesia. After the surgery, I found that I had a new friend called a stoma.  Part of my intestine was now outside of me next to my belly button, and this is a temporary fix to go poop and bypass the area of my large intestine where the tumor was.  This is called an ileostomy.  Google it.  Weird and fascinating at the same time to have an external bag that held my poop in a liquidy/pasty form. It reminds me of those viewing portals on cows to study how they process food, if you know you know, remember I went to college in the middle of Kansas. So if you hear a wet fart when you are by me, forgive me in advance. I can't control it and will be giggling with you. I don't have the typical mechanisms to hold anything in. Also, these farts don't stink, thanks to the filtered bag! Also, I can poop with my pants on sitting on the toilet.  Actually, I can poop standing up if needed. Weird.

After my surgery, I got more information from my doctors. They gave me the stoma/ileostomy because they held off on removing the intestine with the tumor because it was larger than they thought, pushing against my pancreas, and noticed an area outside of my intestine that they biopsied. The biopsies all came back and concluded that I had Stage IV colon cancer (gah!) and spread just outside of my colon. The good thing is that they did not find anything else on other major organs or lymph nodes and really concentrated in the area where they found the tumor.  

On Tuesday, March 8th, I was released after a weekend of acute kidney failure. What's next?! They found that with all the pain meds, my hypertension medication, and my condition, I wasn't getting enough liquids, so they put me back on the IV to hydrate me and monitor my system and labs.  I was ready to go home at that moment.

We had our first oncology meeting Monday, March 14th. We have a chemo plan set once I get the green light on my abdominal healing this week.  The approach will be aggressive chemo sessions starting in April with the first round lasting through June.  They will then assess how the cancer has reacted to the chemo and make a decision at that point of our next steps (more chemo, or a procedure they call warm chemo) If all goes well, I'll have two surgeries right after that to remove the cancer and then get my plumbing back in order. 

Yes, we are getting a second opinion with Mayo for those of you wondering. We hope to have this review this week. Fingers crossed that they come back with the same approach and make decisions easy.

With our colon-rectal surgery check-up this week, we not only hope for the green light for chemo but also to introduce more solid food in my system.  If you know me, I've been craving the craves. Need more sustenance than soups, purees, ensure boosts, ice cream, and cookies. I need to gain the 10lbs and then some I lost back so that I can get back to fighting weight for chemo. You all have been asking but I will let you all know what meals to send! Rice Krispy treats are on the top of my list with and without the fun stuff...

So heavy news with that Stage IV diagnosis. I am still processing what this entails, both the cancer and this new friend I have with the ileostomy bag, which my sister named Tomás, an alliteration of the word "stoma" and when you think about it’s kinda too much. By the way, the sisters and my mom came up last week to lend us a hand getting back to the swing of things. Don't underestimate family. I haven't laughed so much in a long time.  Between my mom and her funny ways of doing things (can we say impromptu altar was set up) to my crazy sisters and their oddities (let's just say lots of NSFW conversations), it was much needed pamilya time! The four of us have gone through so many tough times in our lives. This is just another that we'll be laughing and eating through.  I love them.

It is gonna be a long 2022! I hope that we can finally cross that finish line after the last 6 years of this crazy world. In these last 23 days, I've experienced some pretty heavy stuff but also a good balance of empathy and connection. I will share these when the time comes.  I am humbled and know that I am loved by all of you. 

Feel free to share this CaringBridge site with those that want to be in the loop.  Jeffry, my sisters, and I will be diligent in keeping you all informed. Keep on sending me funny distractions - TikTok vids, cool design things, good reads, great binge-watching, roblox fun, and of course, if you are in the Twin Cities - amazing walks as the weather gets warmer or field trips somewhere (thanks, Sarah Hays on our mani/pedi date!!)!

Thanks in advance for following along. I think this will be therapeutic for both Jeffry and me.

I'll leave you with this poem from Dhiman called "A Heart of Courage and Trust"

"Maybe it will take time to be okay again. 
But there is still Hope to carry you through this phase and you do not have to get there today.
Let life take its time.
Even if you try you cannot let go of all the feelings in your heart in an instant.
You have to embrace them in order to overcome them.
Give love to yourself, practice being patient with the process.
Remember: you do not always need to answer, sometimes all you need is a heart of courage and trust and the belief that even in the darkness you will find your path."

REFLECTION

Oy. I read and re-read the post above numerous times in the last hour. I see and hear the fear inside me with the words above. SO MUCH to hold in that first month. I am so glad I got that out of my system at that moment.

I reflect on the poem from Dhiman specifically this line - “You have to embrace them (feelings) in order to overcome them.” Holds to so true to the emotions that I have gone in and out of the last year and a half. Becomes so draining on the soul and the body. I have learned to sit with the feels and figure out how to use them or to release them. It has taken me a while but having this filter has gotten me through the days and also prioritized the stress that comes my way.

The medical world that we were pushed into also was a surprising introduction. Although I grew up with all the medical whatevers with all the medical books and journals at our disposal (thanks mom and dad!), this situation was very different. I was both in awe and what the fuck. My therapist recounted to me that I treated this diagnosis like a business, after telling him about weighing the risks and opportunities on the challenges both Jeffry and I were dealt with. I paused when he said this and realized that yes, I did treat the journey like a job. These moments were our business to figure it out but on our terms. We both delved into the research everything that was throw our way. Dr Google was helpful and scary at the same time but many many many questions came from this discovery, even if the results were scary things to think about. We pounced our medical team with a litany of what ifs and what abouts but I know they appreciated it when they would say “I have never heard that question before” or “Wow that’s something we didn’t think about".” I guess it helps being both curious and strategic thinkers (thanks Strength Finders!)….

WHAT IS HAPPENING NOW

Since I last posted on CaringBridge in February 2023, I started maintenance chemo. First couple of months was with Xeloda, chemo pills that I took orally, six pills a day, everyday for 2 weeks and then a break. I made it through five rounds and noticed that I had major edema on my ankles (swelling) and consistent shortness of breath, to the point that walking up the stairs was a chore. If you’ve ever been out of breathe, this was 5xs worse as it took me a long time to catch my breathe. Scary.

I eventually stopped Xeloda and went back to infusion chemo. Same drugs just administered differently. Good thing I kept Portia - my catheter port on my right chest. Portia has gotten me through a lot of un-necessary pokes and pricks of infusions and bloodletting. Still in awe of the technology that we take for granted. Next week I start round four of infusions, typically administered at home with our trusty home nurse, whom we had last year for Pumps disconnects. So far so good! No side effects and staying healthy, although I was asked to gain some weight which I happily obliged by eating ice cream every night. My faves right now are Yassos bars and the occasional Milkjam and Pumphouse Creamery - this one only a mile walk from the house round trip so a good way to get steps in. That’s 2000 steps for those counting.

Our next big milestone is my second bronchoscopy that will be conducted next Monday August 14th. I’ve had some lung issues the last 6 months that included infections and shortness of breath. We’ve been watching closely but overall unremarkable scans and blood work until my last CT scan that showed some thickening of the septal walls in my lungs. Although I have not been showing any conditions both clinically and symptomatically, my medical team needed to rule out worst case scenario - lymphangitic carcinomatisis. This is hard to read/take in but we won’t know till we know. I don’t want to pause my life until we know the facts. I have been feeling amazing the last month visiting our families and celebrating a lot of milestones. This time has been our longest stretch of “normalcy” in a long time, knock on wood of course.

Thanks for engaging and reading through these reflections and updates!

See ya real soon. XO

I’ll leave you with this from Moonomens…

“The trick is to enjoy life. Don’t wish away all your days waiting for better ones ahead. Just appreciate where you are. You have come a long way, and you’re still learning and growing. Be thankful for the lessons. Take them and make the best things, right now.” - @marcandangel