CANCER Interview Questions- Who/What/When/Where
I was sent a questionnaire for a blog and thought I’d post it here for my friends.
Most of the questions people ask me regularly are in this article.
This article isn’t for everyone; there are some fairly raw details included.
Please tell us a little about your cancer journey. We’re there any signs or symptoms you ignored or that prompted you to see a doctor? What stage?
Honestly I just thought I had a vicious case of hemorrhoids. Like, VICIOUS. I was in my late 40’s, overweight, out of shape and had a terrible diet; hemorrhoids seemed like it just came with the territory. I probably dealt with them for a year before I saw my doctor about it. Nobody wants someone poking around in there so I think it’s kind of natural to put it off. (I have never been the kind to run to the doctor if I didn’t absolutely HAVE to.)
The doctor said it was hemorrhoids and prescribed a suppository and told me to lose weight and exercise. (Literally what he says to me every time I go in.). 1st prescription didn’t work, at all. 2nd prescription didn’t work, at all. So he sent me to a Gastroenterologist.
He gave me a VERY different kind of exam from my GP, and very gravely told me there was something in there and to prepare myself for it to be cancer. We got a colonoscopy scheduled and they confirmed there were not one, but TWO tumors in my rectum, one the size of a golf ball and one the size of a small apple, both in a space less than the size of a coke can. He referred me to a surgeon that specialized in robot colon surgery and we set up a plan.
On September 27th 2018 I was diagnosed with stage 3B rectal cancer.
In the fall of 2018 I started 6 weeks of intensive chemo and radiation. The goal was to reduce the size of the tumors. The small one was 5mm from my sphincter, and the initial expectation was that only a miracle and unprecedented accuracy from the radio-oncologist was going to #savethehole. I was told to prepare myself for a permanent colostomy bag, which I considered “sub-optimal.”
In January we did an MRI and the tumors had both shrunk, but miraculously the lower one had shrunk enough to #savethehole which almost exploded my heart. I was so happy.
On Valentines Day 2019 he did a colon resection and installed a loop ileostomy, to be reversed after another series of chemo treatments.
In April we started 8 rounds of chemo. 3 week cycles. Day one is infusion day, and then pills until day 14, with 7 days rest. Each round gets harder, but so many people have it so much worse than I do that I just don't complain about it. I’ve been fortunate to restructure my workflow so that my assistant has taken on a bigger role while I go through this whole process. The worst side effect is I can’t stand anything cold, as well as I get overheated immediately, and it’s billion degrees in Houston in the summer, so I have no way to escape the heat and no devices to cool off.
Treatments end almost exactly 1 year to the date from diagnosis. Then sometime around Christmas we will reverse the ileostomy (due to my work schedule) and work on finding normal again.
Does cancer run in your family?
Not in my family. This was a case of Polyps Gone Wild. My wife lost her mother to lung cancer (brought on by smoking,) and she (my wife) had cervical cancer when she was 30. So this process is, unfortunately, not unknown to us as a family.
How did you explain things to your kids?
It was literally the hardest part. I have 2 sons in the Navy and one headed to college in the fall. The question for me was WHEN did I want to share and how much. The problem was that for a couple weeks all I knew was that all of this bleeding and pain was probably cancer, and that it was probably pretty bad, but hadn’t been confirmed or evaluated. Given that there were 2 large tumors and the doctor was pretty shaken by it, my gut instinct was that I needed to start making plans for my own passing. It was a pretty black time for me.
My grandfather used to say “Don’t go borrowing trouble” and, while I was completely despondent and freaking out, I didn’t want to do the same to my kids. We waited until we had good information from the MRI, PET Scan and Colonoscopy pathology before we told them. Given that one of them was in Japan, one was in Washington and one was here with us, we did what any modern family would do- we told them in our family group message. Seems weak, but that way everyone had the same information at the same time and could deal with it in their own way. One was emotional about it, one was pragmatic about it and one just had a lot of questions. I took a gentle approach in dealing with each of them and they all seemed to accept it and process it in their own way.
How is your treatment going?
I don’t complain about my treatments. In general they are going well, mostly I’m just tired, hot, and food tastes weird. The infusion has some side effects that abate over about 8-10 days, but they are more like HUGE inconveniences than anything else. One of the bartenders in our company is being treated for breast cancer and she lost her hair in like 3 days and the infusions truly kick her butt. Comparatively, it could be so much worse.
The comment I get most of the time is that I don’t LOOK like I have cancer, and for that I feel blessed. I haven’t lost my beautiful hair or a ton of body mass. My eyes look tired a lot, but I don’t have the “cancer eyes” that many people suffer.
I can’t go near anything cold, and it’s hot as hell in Texas in the summer. At the same time, the heat saps me immediately and I really have no way to cool my body or my core so I stay inside as much as I can stand it.
Before your diagnosis, what did you know about colorectal cancer?
Literally nothing. Not something I thought about and never thought I’d have to.
What surprised you about CRC?
How it can grow under the radar with literally no symptoms. The doctor said the tumors had probably been growing for 8-10 years before we found them. Literally no signs anywhere that something was amiss until the bleeding started. Once the symptoms started, they escalated quickly and dramatically.
Do you have anything you’d like to say involving CRC?
Honestly, the thing I would say is that it’s not a death sentence, and they are really good at getting it. They say get a colonoscopy at 50, then changed it to 45, but that wouldn’t have caught mine “early.” We DID catch it, and are dealing with it effectively.
Tell us about your ostomy. (ie. ileostomy, colostomy, permanent, etc)
I have a loop ileostomy, which is expected to be reversed in the fall. I hate this thing so much and it has given me my most emotional moments through this process (outside of the time between finding out I had cancer and then finding out I am not going to die from it.)
I have a hard, round stomach and naturally oily skin. Nothing wanted to stick to it, even in the hospital, and they just sent me out with a kiss and a smack on the butt & said I’d figure it out. (Not entirely accurate, but that’s what it felt like.) For 2 weeks I fought it and went through product after product. Each day the skin around my stoma became more raw and inflamed and I finally lost it one night at 3AM, after changing my bag 5 times in a day. It hits you from so many different angles and I just wondered if this was my life now. I thought I’d never be able to leave the house because I had no confidence in my bag not failing. I thought I’d have to deal with poo on me like an infant every day. I thought I’d never be intimate again because I was disgusting and incomplete and had a bag of shit attached to my stomach, which has this bulge in it now. I thought I would be looked at as less of a man and that my whole life was going to be diminished.
I am not an emotional person, but at 3AM, I was on the floor of my bathroom, defeated by a hole in my stomach. Not my cancer, not my healing booty, but by this !@#%% ileostomy. I got up and wrote this post on Facebook: https://www.jbarh.com/blog/march-is-colorectal-cancr-awareness-month It was the first time I had shared my frustration with my friends.
I literally duct taped the flange of the bag to my stomach and went back to bed, knowing I was going to beat this in the morning one way or the other. I called the stoma nurse from the hospital and she came by the house that morning and just shook her head. (might have been the purple duct tape, don’t judge me.) The skin was SO bad. She gave me some tips, cleaned up my wound (not very gingerly I might add) and dropped some product samples on me. I found the right product mix and began the process of gaining confidence and regaining my life. I have Nurse Nancy, the product rep from Coloplast, and the guys at medical monks to thank for bringing me peace over this thing.
Before your ostomy, what did you know about them?
Literally nothing. Didn’t know anyone that had one (or at least I wasn’t aware of them) and didn’t even realize it was a thing.
What surprised you the most about having an ostomy?
Honestly, that so many people around me either currently had them or used to have one. So much love and support and GRACE was extended to me by people who had read my post and understood what I was going through.
Did/do you have any ostomy care nurses to help you adjust?
Nurse Nancy was a big help in understanding some processes to help avoid bag failure. Once I got the bag dialed in, got my changeout process down & got a belt to help manage the weight of the bag, it has only failed once, and I kinda knew I was pushing it that day.
do you attend a support group?
I have a controversial position on support groups and it is this: stay out of the support groups. Especially online. They are the only place that made me sadder than the infusion lab. I realize that everyone’s path is hard, and not everyone is born with a warrior spirit, but the couple I tried just brought me down. I am thinking about starting a Cancer Warrior group after I am done- a group where we come in and talk about how we are crushing cancer, and not how it’s crushing us. Again, I realize that not everyone is made this way, and that so many people need emotional support, etc, but it just didn’t work for me.
What are your post-treatment plans?
Get back into shape. I’ve lost about 30 pounds through this process, and need to lose another 20. I turned 50 this summer and to me every day is a gift now as I realize that I have more yesterdays behind me than tomorrows ahead. I want to make the most of this and it starts with a good diet and exercise.
Do you have any ostomy tips or tricks to share?
I do, but I think I will save the bulk for future blog posts/videos.
But a couple that I have picked up are:
Stay away from okra. Trust me. Brussels sprouts too.
I cut a little piece of foam workout mat (like you buy for a kids playroom or workout room) and keep in my backpack so that when I empty my bag I am not kneeling on a disgusting floor. (I’m a kneeler, not a sitter.)
Tell us a little about your blog
It’s not much of a blog, really. I started it in 2010 and used to post recipes, rants, jokes and things I thought people would be interested in. Now I realize that folks really don’t need another random person bloviating about random topics. I restructured it when I knew I had cancer as an answer to the “Caring Bridge” sites, which I thought were inadequate and commercialized. I set it up as a page that people could find out what was going on in my treatment, what my needs were, and where my head was. I also set up a link for them to donate if they wanted to help out. As the treatments leveled out and things were moving well, I moved it to a new host & server and am rebuilding it to encompass my new YouTube channel and make it more of a hub for my life interests, and not so much a platform for opinions that no one asked for.
I intend to flesh out my Cancer Warrior page and give more resources for people that come across it. I have a few posts that are in the process of being written that I hope will give encouragement to people who have been diagnosed and people with ostomies that I am going to try and get on a broader platform. I know when I was diagnosed I needed to hear that there was a path through this. I have used my voice to encourage people to get a colonoscopy, and I hope that I can not only raise awareness, but give comfort and resources as well.
What would you say to pre-cancer you?