Postby JudeD59 » Mon Aug 14, 2017 2:15 pm
I've read different opinions on when to start counting your "cancerversary" on different websites. Some start counting from the day they were diagnosed while others count from the first day they are cancer-free. I'm not sure which is correct, but I just wanted to post today because on August 12 of 2015, the cancer was cut from my body after being attacked by radiation and Xeloda. So when I was wheeled out of surgery, the cancer was supposedly out of my body and my CEA's and scans since then support that supposition. 2 years without cancer living inside me.
The past two years have been a hell of a long ride and I am forever changed by the journey. Not only physically, but mentally, emotionally, and my opinions on many things have also evolved. I was a private person and that is no longer possible or desirable. I remember being in the hallway waiting for my radiation treatment way back at the beginning of all of this and a woman I had never met before was standing in front of me telling me about her radiation treatments for her breast cancer. In the middle of her tale, in the middle of this very public hallway, she suddenly dropped her robe to her waist to show me the redness on her bare breasts. I have the worst poker face in the world and I'm sure my eyes just about popped out of my head while my face blushed as red as her irradiated breasts. But now, I would worry less about modesty and more about how I could help her with her burns. I gave a play by play account of my treatments (leaving out the parts that would get me banned) on Facebook and was told repeatedly how brave I was to share my experiences publicly. Brave? Not really. Writing things out is how I process issues that terrify me plus it was easier to share it all at once through Facebook instead of explaining it a hundred separate times to individuals, and I wanted the truth as I know it out there instead of gossip that can get twisted and exaggerated as it passes from person to person. And if it helped one person deal with their own issues, whatever those issues may be, then ...
When you are trying to get pregnant and failing, it seems like all you see are babies--everyone you know is suddenly pregnant, you can't walk down the street without seeing strollers and toddlers clinging to their parents' hands, and every ad on tv is for baby products. Just like when you are doing a prep and can't eat and all the ads are for food you never eat but suddenly seems irresistibly mouthwatering. Now that I've taken the cancer journey through hell, I see cancer all around me---so many friends, family, and acquaintances have been diagnosed in the past two years. I start to watch what I think will be an innocent tv show or movie and boom--someone in it is revealed to have cancer. It could be a minor character and not add much to the plot of the movie, but at some point, cancer will be mentioned. I'm thinking of making it into a drinking game--do a shot every time cancer is mentioned in this sit-com about a dysfunctional family making it work!
I used to be a "It will never happen to me" type thinker even as things were happening to me, over and over. I went for a regular gyn exam thinking it would be routine as usual and walked out needing a complete hysterectomy for a type of ovarian cancer. Had to have several scheduled and emergency surgeries after that, but still kept a glass half-full view of my life. Went to my gyn again in 2015 for what I sincerely believed were hemorrhoids. Was sent to a specialist by her because she was sure it was prolapse. Specialist told me to see my PCP because he didn't find any rectal prolapse. PCP sent me to colorectal surgeon for a colonoscopy because I was overdue for one (had to cancel previous one because of bowel obstruction surgery) but PCP told me he was 99% sure it was nothing and just wanted to be over-cautious. Colorectal surgeon felt something during initial exam, but said it might just be benign polyp. Best to have colonoscopy to be sure. Still, I never actually in my heart of hearts thought it would be cancer. I sincerely expected to wake up and hear that he removed the polyp and I would see him again in five years or something. Instead, I came out of my grogginess to hear that it was definitely cancer, but, he was quick to assure me, he didn't think I'd have to have a colostomy bag. As though that was my main concern as I heard that I had cancer.
But now, I read things like, "If you make it through two years without a recurrence, your chances of the cancer coming back are statistically reduced," and I don't take heart from it. They can do all the studies they want and add up all the numbers, but the reality is, we are individuals, not numbers, and no one knows if or when it will come back. And no one has an explanation of why my CEA's were off the charts before my surgery, which almost always means spread to other body parts. My glass is still more than half full, but now it's filled with things like, "I'm so glad it's me and not my husband or one of my daughters." I can't begin to tell you how glad I am about that. I'm strong enough to handle it for myself, but please God, don't make me watch one of them suffer. For all the caregivers on here, thank you for what you do. It takes incredible strength and sacrifice, and that feeling of helplessness when you want so badly to make it better and can't must be excruciating. My glass is also full of just enjoying the day-to-day pleasures like feeling the sun on my face or cooking a new recipe that makes my family clean their plates and ask for seconds, or reading a book so engrossing that when I close it, it takes a few minutes for me to remember where I am and what time of day it is. I love losing myself in a great story.
And my glass is half-full with all of you. One of the quotes that resonated with me throughout this journey came from Grey's Anatomy, strangely enough. It was-
"Recovery is not a team sport.
It's a solitary distance run.
It's long, it's exhausting,
and it's lonely as hell."
I did and still do find recovery to be lonely as hell because no matter how much support you have or how good it is, no one else is experiencing what you are and to be the only one feeling those pains, those emotions, those frustrations, and those issues is lonely. You can describe it to your loved ones in detail and they can sympathize and relate in small ways, but then you watch as they live their lives---jumping up easily to grab something as you struggle to stand, gobbling a chocolate donut without thinking twice as you try to decide if pasta and whitefish will be safe to eat or land you on the toilet all night, feeling aches and twinges without worrying that it is cancer rearing its ugly, ugly head the way you do on a daily basis, and you are eternally grateful that they are living healthy lives and don't have the same concerns you do. But it is lonely being the only one who does.
Which is why you are part of the filling of my glass. Although I wish none of you were going through this hell, I'm so much less lonely because I have the members on this board who get it. You all really understand the frustrations, the anxiety, the anger, the relief, the bone-deep fatigue, the isolation of needing to be near the bathroom or the couch or the hospital or wherever you are currently stationed, because you've been there yourself. None of us need to be alone because we have each other. And even though having each other is sometimes heartbreakingly painful, it is also joyous and enriching and funny and priceless.
Thank you for filling my glass for the past two years plus.
Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4