I’ve had a lot of time in 2019 to reflect on this new normal in our lives and because the purpose of this blog is to inform the reader on this experience, I’ve been trying to find the perfect way to describe what it’s like.
I wonder a lot why anyone bothers to read this blog. I assume family and close friends check in to see how we’re doing and what the news is. I’m sure some readers are here to be supportive and to get the low-down. Then there are the readers that I closely identify with ; the “tell me everything because I’m scared that if it can happen to you, it can happen to me and I NEED to know what I’m facing” type. That was me, 100%.
I’m that particular brand of nervous-nelly who is a hypochondriac. I’m sure many of you remember the time I revealed that I actually googled “symptoms of hypochondria” once. I’m that weirdo that reads an obituary of a young person and screams inside my head…… “Why didn’t you tell us what they died from? I need to know if I’m safe from their fate!!” If someone is willing to put out there the details of what ails them, I have to know it all- not because I’m nosy, but because I’m afraid the same will happen to me. This post is written for those like me…. the ones who want to read the travel brochure about Cancer Town, but hope they never live there.
Before March 24 I really had no idea what it was like to live with a chronic illness. I mean, technically I guess I had been living with cancer for approximately 5-10 years, I just didn’t know it. When I was a kid (before the amazing leaps and bounds science has made in cancer treatments) when someone was diagnosed with cancer, they usually died pretty soon there after. My father’s aunt was diagnosed with liver cancer in May and by January she was gone. This was my closest experience with cancer until I was an adult and David’s uncle was diagnosed with a brain tumor a few years ago. I think most people of my generation had the same type of experience – cancer was a death sentence, one that was usually carried out in a short period of time and the amount of time those poor souls did have after a diagnosis was filled with pain and illness and terrible treatments that seemed to make them worse rather than better. Thankfully, that is not the experience many of us have now.
Being a “cancer patient” (I hate that term and am actively seeking a new descriptor, that’s why I’m jovially referring to myself as a resident of C-Town) really is a mind fuck (sorry for the bad language Kathy Douglass). Your life is simultaneously turned upside down, inside out and backwards while remaining exactly the same in some ways. Kids still have to get to school in the mornings, bills still have to be paid, the seasons come and go and all the while you’re standing in the middle of this swirling, “time waits for no man” world silently screaming “What happened to me? What do I do now?” Everything is different but exactly the same.
In this post I’m going to explain the outward part of this experience – what we do and how we do it. I guess it can be called the practical part – the oncology part. I’ll talk more another time about the inward part – the psychological, the social and the emotional part.
So…….. if someone were to say to me “Rachel, tell me all about your cancer treatment experience and don’t leave anything out”, I might say……….
Yes, cancer sucks. There’s even a hashtag that’s very commonly used that says that very thing. I can report that contrary to my previous beliefs and fears, the treatment part isn’t as bad as I imagined it would be. Maybe I’m premature in saying that, maybe the treatments I’ll receive in the coming months, weeks and years will be atrocious, and maybe other patients who’ve been trough cancer treatments will disagree but this is my experience and my blog (my front yard in C-Town) so if you don’t like what I have to say, get off my lawn. When I was first diagnosed, some big decisions had to be made very quickly. My primary tumor (His name is Ted Cruz and he’s the bastard living in my colon) was so large it was about to obstruct my colon so I had to undergo a colostomy the week I was diagnosed. A colostomy, simply put is a procedure where a surgeon cuts the intestines and rather than passing waste by normal means, it is passed through an opening on the outside of the abdomen. My guts are literally on the outside at this point in time. This is currently the worst part of my cancer experience. It’s annoying, inconvenient and causes me a lot of self-conscience moments. The location they placed the stoma (the little bit of intestine that is on the exterior of my body) is not ideal as it is exactly were the waistband of most of my pants falls and that means none of my pants fit properly right now. I’m hoping in January to reverse the colostomy and reconnect to the lower section of my colon. Ted Cruz has been shrinking away because of the chemo and they may be able to cut him out at the same time. Our goal medically would be to keep him from coming back. There is a lot more to say about the colostomy but I’ll save that for after the reversal. I’m self-conscience about people knowing too much about it while I have it.
When I was diagnosed I was in an ER with some immediate issues that needed solving right away. Once they were addressed we had a lot more decisions to make: Where would I seek treatment? What would that treatment be? Who would my oncology team be? This was a very confusing time for us and there was A LOT of information thrown at us all at once. My mom, David and I met with the Sarah Canon Cancer Center as well as KU Med and felt that KU was our best option. I loved the GI specialist that I met at Sarah Canon but was underwhelmed by the oncologist on his team. The very first oncologist we met with at OPRMC was an awful experience. In the midst of our shock over my diagnosis, he informed David and I that the most optimistic prognosis would be for 6 years of survival. NOPE NOPE NOPE. We didn’t accept that. When we met with Dr. Al Rajabi at KU MED, we knew he was our guy. He was optimistic, told me I had every reason to hope for many years and told us he was going to be very aggressive with my treatment. It was a completely different outlook and we appreciated it. Needless to say, Dr. Al Rajabi is our guy.
After healing from the colostomy surgery it was time to start chemo. I’ve always heard how terrible chemo is. How it makes you sick and weak. Fortunately my experiences haven’t been that bad. Every two weeks I go to the KU Cancer center. Some weeks I see the doctor or nurse practitioner and some weeks I only go in for labs and treatment. Treatment means I sit in a chair (sometimes I’m REALLY lucky and get a room with a bed) for a couple hours with IVs of medication hooked into my port. A port is a device placed under my skin that delivers the medication into my blood stream without needing to get an IV every time and thank God for that. My veins in my left elbow are already scarred too much to use, I can’t imagine what these past 7 months would have done to my other veins. After the IV drip, they hook my port up to a portable chemo pump that delivers more medication over a 46 hour period. I return two days later and they unhook that pump and set me free for two more weeks.
This treatment is aimed at shrinking and containing the multiple tumors I have. There is the primary tumor (Ted Cruz) in my colon. Numerous unnamed tiny tumors in my lungs and 8 tumors, some larger than others, in my liver. The liver tumors are the most troublesome as they are inoperable. I have about 25% of normal liver function currently and we are babying that 25%. This unfortunately means my party-drinking days are over. I have been cleared however for a glass of wine on Thanksgiving and Christmas. After nearly a year of not drinking at all, that may be enough to knock me on my butt anyway!
The side effects of the chemo are annoying but not unmanageable and I always say “it’s better than the alternative”. My newest side effect is neuropathy and causes my fingers and toes to be numb. Basically it feels like my finger and toes are asleep all the time. I also get mouth sores that are a lot like cold sores and make it miserable to eat for a few days – but hey, soup is good on those days.
So, I’m coming to the end of this post and havn’t addressed the elephant in the room…. the $64,000 question…..what I would want to know if I’m someone reading this post……just what IS your prognosis? (Insert shock, pearl clutching and audible gasps.). Polite people just DON’T ask that sort of question! I’m realistic and don’t shock easily. I have found that people wonder about that for a couple of reasons : 1. They tend to assess the seriousness of your situation based on “are you going to die?” And 2. Close friends and family want to prepare themselves for what may be in store. So here’s what I can tell you; After we had that awful experience with the first oncologist I told Dr. Al-Rajabi that I didn’t want to know specifics on how long I had to live. The fact is, we all know we’re going to die- most people don’t know when. Unfortunately I know how I will probably die, so I have no use for knowing when. I don’t want to live my life with this number hanging over my head. I set goals and make plans just like someone without a chronic illness. Cancer is part of our lives, but it’s not our lives. If I wasn’t receiving treatment my life would be short but I am and so I have every reason to keep keepin’ on.
The plan is to continue this course of treatment while it’s working (and it IS working right now – my tumors have shrunk by 75% in some cases) until it stops yielding results and then we’ll change out the medication and ride that course until we move on to another and so on and so on. Right now I’m doing great. I feel well and my quality of life is high. I have no reason to believe anything is imminent.
It is true that one day I will die, but it’s true for all of us and for me that day is not today.