June 3

I picked Mayo.

On June 2, we will pack up the car and head up to Rochester, MN. My appointment is at 7:30am on June 3 with a Gastroenterologist. Based on that appointment, my next couple days may include meetings with other doctors, surgeons, oncologists, dietitians, nutritionist, and may include additional testing.

I’m hoping they start this whole process over. A new colonoscopy, new blood work, new scans. I’ve made some pretty drastic changes to my eating patterns the last couple weeks, including a juice fast, avoiding gluetin and alcohol, and now trying to alkalize my body by avoiding all meats and dairy.

The best case would be that I qualify for a new procedure that removes flat tumors from the colon, then am referred to their integrative and alternative medicine department to work on future prevention methods.

My worst case would be finding out the cells have spread outside the colon and into other organs. This would result in immediate surgery, and either chemotherapy and radiation.

Right behind that being the worst news, would be that nothing has changed at all and I remain in this dead-zone. I read that the type of cells I’m forming weren’t event recognized as cancer in the US until 2008. What if that still isn’t right? One of the nurses I talked to asked if I’d ever be interested in talking to a support group for Ulcerative Colitis based on my “unusual situation.” She will contact me in “a couple months.” I can’t even commit to things in mid-June, I can’t imagine a couple months.

It’s still hard for me to grasp the entirety of all the information I’m given. I spend most of my free time now, getting lost in what seems like every possible nook and cranny looking for solutions. Making phone calls to people who have fought off cancer without surgery, and watching their videos. I read books, listen to CDs, talk with doctors, find new recipes, only to have my hopes crushed by a minor comment made from a friend, or one sentence that contradicts everything I’ve let myself believe.

It’s a roller coaster, and it’s draining. And this is only the beginning.

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Author: Clarissa A.

The older I get, the less I know.

1 thought on “June 3”

  1. Hi Clare,
    You probably only vaguely remember me, but I’m Colleen Morrissey’s dad, Steve. Colleen read what you were going through and thought I might be able offer you some assistance, information, support, perspective, guidance regarding your medical battle.

    Nearly nine years ago, Ulcerative Colitis entered my life and it’s impact will be a part of my life forever. I read how frustrating, bewildering, confused, overwhelmed and, yes, scary the whole situation has become for you – been there. Because the disease is relative rare for most people, they have no idea what to tell you and what you are going through. Peope relate to colds or the flu – UC? what’s that? And the stigma of where the disease occurs can be very embarassing/humiliating to many people – bad meal converasation topic (TMI).

    I knew of NOBODY who ever had it – only a couple people had even heard of it, It was evident early on I had to fight this battle on my own with nobody knowing or understanding what I was going through. UC is still a very underserved disease in the medical world – I found that most treatments were “shots in the dark” that worked for some people some of the time. I also learned no two people have the same UC experience – some are able to manage it for long periods of time while some, like myself, had a very aggrevise form that never responded to numerous treatment options.

    I eventually lost my battle, but a won back my life. After the initial shock of my altered body, I realized “life goes on” – and I was lucky I found it in time to possibly save my life. My ransom for getting a regular life back I now realize was minimal in the long run – today, I rarely realize I’m any different than I was before UC. Yes, my life is slightly different than it used to be, but, just like I can’t touch my big toe to my nose anymore, all of us have to eventually surrender some of our prior physical abilities to the frailness of our human bodies.

    I wish I had someone to talk to while I was going through my ordeal. Many things I was told by even medical professionals turned out to be completely false or dramatically different than events turned out becoming. Have you seen a medical professional yet who has gone through UC? – you won’t. Everything they tell you is based on what they have been taught – not experienced. While knowing the physical aspects of the disease is good in trying to figure out how to battle the disease, only someone who was “been there” can truely appreciate the whole aspect the disease is having on your life.

    I would love to be able to talk with you further about your struggle. While I cannot provide any medical insights, I can hopefully enlighten you on every other aspect of what UC may have in store for you in the future. But if you don’t feel comfortable, I completely understand. No matter what, I wish you well in your battle with this mysterious disease. I am “living” proof that people can survive and still have a great life after UC.

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