Embrace Your Storm

So, this is the 3rd week since surgery for colon cancer, which took me by surprise. I’m again encouraging anyone over 45 to please get a FIT or Cologuard test, or schedule your colonoscopy. My surgery looks to have gotten all the cancer. I’m told chemo would only help my particular situation by 2%, so the Oncologist is not recommending it. I will likely sign up for a clinical trial I am reading 25 pages about. They do blood tests. If they find you have the marker in your DNA, they suggest chemo. If there is no marker, they monitor you and keep doing blood tests for 3 years.

This has all been. SO. EXHAUSTING. Any burst of activity makes me so tired.

I wake up and still give myself blood thinner shots in the abdomen. The surgery pain has lasted longer than I had anticipated, but is finally now starting to lessen. I can go on short drives if I hold my guts over speed bumps. I have lost 20 pounds and most of my appetite.

Right now I’m trying to focus more on healing, than “what if it comes back?”

I have had amazing love and support from friends. A benefit and variety show will happen 3/11 at Somewhere Bar. Silent auction items include Treefort Tickets, merch from Old Idaho Penitentiary, Boise Brewing. A 1930 vintage MARTIN GUITAR from my friend Eric Paul! Tickets to Sawtooth Valley Gathering, donations of photography, books, music performances, art by Zella Bardsley, Michelle Bass, and more things keep coming in every day. The funds will go into my HSA to pay for bills and any upcoming treatments.

The good stuff, is I’ve found out how many of my friends and their families have endured and survived similar situations. Many friends have had a worse diagnosis than I have, and they remain strong and healthy years later. This is encouraging.

Ready for a statistic? Approximately 39.5% of men and women will be diagnosed with cancer at some point during their lifetimes. This really sobering, and made me want to do some aggressive research on how to help myself get better long-term. I am listing some things I have learned about, for others who might need ideas.

I have been sent a barrage of alternative treatments and therapies. I am open to both western and eastern medicine. I am taking a daily polypore hydrosol combo made by the amazing author/herbalist Darcy Williamson from Maven’s Haven, an amazing and magical place with workshops and retreats along the Salmon River in Lucille, Idaho outside of Riggins. Can’t recommend this place enough. She is brilliant, and has a heart of gold.

A medical friend suggests a low-dose 81mg of aspirin. There’s a study that states the use of aspirin for 6 years or longer with a 19% decreased risk of colorectal cancer and a 15% decreased risk of any type of gastrointestinal cancer. My doctors haven’t suggested any after-surgery approaches yet, this may be worth a try.

Some other friends swear by Fermented Wheat Germ Extract. It looks to be anti-tumor, anti-viral, anti-everything bad. Friends are actually rounding up lab materials so I can make this at home if I can figure it out. Avemar is a commercial version of this product, which is much more affordable to make yourself.

Other friends have said they had great results with Biontology, and several have recommended I go to Tijuana to be cured at Oasis of Hope. I think this is better for higher stages of cancer, and someone with lots of money to spare. I don’t think they take U.S. insurance. I really want to go to Tijuana, but mostly for some cheap beer and tacos.

Sometimes I just get tired of talking about cancer, and wallowing in my overwhelm.

So today, I had a refreshing break, doing a podcast and interview with my new friend Jonathan Nadeau. He’s accepted my Gaelynn Lea film “Violin Scratches” into his Tournadeau Film Fest. His business slogan and podcast is, “Embrace Your Storm.”

While I deliberate the severity of the cancer I’ve been through, I find out that Jonathan had lost his sight at the age of 14 in a car accident. He is positive, successful, and wildly creative and passionate. It has given me perspective.

Please listen to my interview with Jonathon here, at my SHE LIKES TO GO SLOW PODCAST.

World Cancer Awareness Day

*Spoiler alert. If you don’t want to read about my recent cancer experience, I’ll take you to the end message right now. If you’re 45 or older, please get your colonoscopy or at least home detection kit right away.

Colon cancer is the 4th leading cause of death, and one of the most preventable if caught early. I get it, I wanted nothing to do with the primitive “prep” process I’ve heard about. I’d requested a home kit from my doc in January, but never received it. Randomly, a kit came in the mail a couple months ago, so I sent it in.

At one point, my old dog came up to me, stopped, and scanned my body. She rarely makes eye contact, but after scanning me, she looked me right in the eyes and stared. It was like she was saying, “Ma, something ain’t right.”

The test results came back positive for finding something. I told my doc about it, and he said “Who ordered the test?” I thought they had, but turns out my insurance company had randomly mailed one out.

Being end of the year and a turnover of deductible on the way, my friend shared a free room in Hawaii so I went, and then scheduled a dreaded colonoscopy the first week of January.

The prep is brutal, I’m not gonna lie. 2-3 days of your life are spent emptying the contents of your gut with no mercy, and plenty of pain. I know this is why most people don’t get colonoscopies, which leads to the high statistics. I keep questioning why it’s so primitive, why we can’t do imaging to screen people when they’re going to do that anyway? The home test kits are an easy and painless way to get started for screening.

After my procedure and waiting for my friend to return, I woke up and asked the assistant, “Did it go okay?” Her response was, “What’s your favorite hospital?”

It’s where my shock and anxiety went crazy. Still coming out of being under, we were being told to get a CT Scan across the street ASAP to see if the cancer had spread. I told my friend, “Wait, I have cancer?! I don’t feel like I have cancer!” No pain. No symptoms.

I was so rummy and in shock, we went to the hospital across the street and a person told us to go to the E.R. part for imaging. We’d been given no instructions on where to go, which had me in the wrong building using out-of-network doctors. If I had only been clear-headed, I might have avoided this decision. My poor friend was in shock as well, I’d thought we’d do this thing and grab lunch, instead of seeing if my brand new cancer had spread or not. CT Scans came back without showing a visual spread. I was connected with a surgeon immediately, who said he would have to remove 3 feet of my guts.

My stress level was indescribable, especially the first week of waiting. I continued to do my radio show, talk about concerts and contests, and between every sentence I’d say, I’d hear in my head, “I have cancer.” Here’s the thing about that. When you hear “You have cancer,” that’s how it all starts for every person who survives it or not. Priorities were suddenly very obvious and rearranged. You don’t care about money, image, superfluous things. You care about NOT having cancer. Period.

The things people said to me :

You should get a second opinion.

I guess you won’t be riding your motorcycle anytime soon.

What stage is it?

This is the beginning of the biggest fight of your life.

You’ll be fine.

A friend reminded me that “We never get out of this life alive,” and that being grateful is what keeps her positive through checks and appointments for remission.

I also heard amazing success stories from friends and their families. People with 6 feet or all of their guts removed, brave survivors working around these challenges and living for years.

The hardest part of this has been the fear. Is this it? Am I going down? Did I do everything I wanted to do? I had a dream that some people were trying to put me in a purple body bag, and I could see them through it. I read that fear and excitement are closely related, so I tried to psyche myself into being excited about the surgery. The next hard part has been being solo. I keep hearing in my head, “No one is going to come and save you.”

That’s thankfully not been completely true.

I had surgery 1/26. They removed one foot instead of 3 feet of my guts. The hospital was chaos. A guy wheeling me around said he walks 5-15 miles per day, and they are so under-staffed from Covid that the remaining people are working so much overtime that their immune systems are shot, giving most of them Covid. The heart monitor in my room wasn’t working, so they wanted to move me. Anxiety had made my BP and pulse over the moon. When moved to my new room, my first “soft” food was a ham and cheese sandwich on toast? I think they made a mistake, I certainly paid for that later. People came in to give me a shot, then another person tried to give me the same shot 10 minutes later. I could hear a person wheezing a long, Covid cough down the hall. The surgeon wanted me to stay 3 days, but I knew I was not healing there. On the 2nd day, the surgeon put his weight on my biggest incision and looked at me. It was like a wild west standoff. I knew he was testing me. I looked him straight in the eye and didn’t blink or make a noise. He said, “You are really tough. Most people flinch when I do that. I’m sending you home today.” Did it hurt? Hell yeah. Was I going home? Hell yeah.

Friends have been amazing. I’ve been set up with this bland food I need to eat for weeks. Friends have dropped off Tylenol, Gatorade, coloring books, lotion. Smart Water and Path Water are keeping me going. I have a gift card that will help me get groceries, as I can’t drive any time soon. I am most grateful that I can work from home as I go through this healing process. The doctors want me away from Covid for as long as I can be. Supposed to be 6 weeks of healing. I sneezed the other day and thought I had turned myself inside out, it was really painful.

Getting up is the most painful part of the day. I use a cane to help me out of bed, then have to catch my breath. Clean the fridge? Catch my breath. I have to give myself daily blood thinner shots in my abdomen. I just have to suck it up and do it. There’s no one here holding my hand. While this would be much easier to get through with a companion, I am thankful for so many friends who just check in, or just chat about stuff. Covid has made the experience much more lonely. People drop things off and I watch them drive away as I’m being extra cautious.

My gut is a symphony of disagreement. I picture it like a bunch of construction workers on I84 and The Flying Y. The traffic report would be something like, “Having some slow-downs in the construction area, as traffic is re-routed from the removal of the Fred exit. (Naming my removed cancer “Fred”). Traffic will be stop-and-go for a few weeks until construction is finalized. Proceed with caution, and only eat soft, bland foods.”

Here’s the biggest thing I’ve learned. Everyone else’s story isn’t your story. This is your life, your path, your experience. All we know to do is to share with others our own experience. We may or may not need the chemo, colostomy bags, radiation that others talk about. There may be other treatments available that weren’t available to other people. Things are always changing. Positivity is necessary to just get through the process.

My follow-up appointment is next Tuesday, where I will learn if they got everything, or if it had spread to the lymph nodes. If so, chemo would be the next step. Obviously hoping for the best, and thankful for all the friends holding me up. I just want to have friends over for a fire in my back yard while we sip cold beers together. Soon.

Putting things into perspective, a friend of mine had to say goodbye to their friend Lani Forbes yesterday. Lani was a successful local author, wife, and mom of 3 children. She had stage 4 endocrine cancer, and had been to several specialists. When she was pregnant, a nurse noticed she could not use the left side of her tongue. Loni did not make it, and as I went through her Facebook page I saw what a phenomenal woman she was. Here is her family’s GoFundMe page, which will help the children.

Perspective.

I don’t know how cancer picks its victims, but I do know that early detection is priceless in avoiding many unhappy endings. My random home test could have possibly saved my life. Side note-if not, please make sure we play a weekend of sessions I’ve remixed as my last wish, whether this gets me or something else while I’m working here 🙂

I’m encouraging you to get a home test, FIT test, Cologuard at the very least. Around $40 or covered by your insurance. Get a colonoscopy done. If it’s clean, you avoid that for another 10 years.If not, you’re alive and get tested more often. Give extra love and compassion to those you know with cancer, and especially to those you know supporting their friends and family with cancer.

Finally, a friend of mine has started a GoFundMe for my own expenses related to my own adventure. Do not feel obligated to donate. Here is the link, https://www.gofundme.com/create/mfa?redirect=/withdraw/help-rochelle-meet-her-medical-deductible/

You can avoid fees by a Venmo donation to roxxboise@gmail.com.

If it’s between me, or investing in a kit, please invest in yourself! Much love to friends, family, and coworkers for getting me through this. Much respect to all medical and emergency workers being overworked and underappreciated during Covid. Thanks for following my journey.

Have questions or comments? Email me.