Tuesday, June 10, 2008

the down side

flower


The down side, there’s always a down side isn’t there? How would you label me? Upbeat? Full of life? Crazy at times? Would you believe depressed sometimes?

I spent a day writing the history of my depression to eventually share but still haven’t gotten around to it. I’m not sure that I ever will. But can you believe that while I had bouts of depression most of my life I have typically been described by others as “bubbly”? We don’t know what hides in people’s hearts if they want to hide it and I hide it I did.

While my principal in high school described me as bubbly and outgoing to my parents, I tried to kill myself at 17. Obviously, my suicide attempt failed as I’m 41 now and I don’t talk about it much but it did happen.

The depression, itself, is a whole other story and not really what I’m trying to get out here. But the short version is that I believe it was all hormonal. And I don’t think we give our hormones enough credit for the way they make us feel. See I was diagnosed in 1994, I think, with bipolar disorder. You might know it better as Manic Depression. And I took lithium for it for almost 5 years. But in 1998, I had to have a hysterectomy and had my ovaries taken out as well. After which I was put on a set amount of hormone pills, Premarin. I saw my diagnosing psychiatrist a year later, after I had been off the lithium for several months and she no longer felt that diagnosis fit. All those years of anguish were due a large part to my hormones.

I don’t suffer those depressions anymore and never have I wanted to live more than after I was diagnosed with Stage IIIC Colorectal Cancer. The funks I get in now are due to the cancer diagnosis and my frustration with feeling so powerless. The eternal questions of what is best for my entire family not just what is best for my selfish self.

Is it worth one more year of living, if my family has to take total care of me and I am not able to take care of my own basic needs? Thankfully, that’s not a question I have to answer now but believe me I think of those things, trying to prepare myself for the day I might have to make that decision.

Before the surgery to remove my cancer I was given papers for a living will. I filled it out and really don’t know if my husband, or parents, are aware of my decisions. That’s been almost three years ago, do I feel the same today? I suppose I will need to make up a new one soon.

flower


I know I have not totally “dealt with” my cancer diagnosis. I wonder if I should talk more about it to someone but the thing is, I went to a cancer counselor after my diagnosis and didn’t feel that I talk any better to her than I could my own family. She had that same pity in her eyes that the doctors did. I can’t take that pity. It hurts me further. I want my doctors to get mad with me and help me beat it, not feel sorry for me.

Occasionally, I have to write all my feelings out on the subject. This is my therapy. My way of “dealing with” it. I don’t talk about it everyday, and I don’t let it weigh me down until I can’t function. I do allow myself an occasional day, when I’m at my lowest, to just enjoy life, actual life, not dishes or laundry, but breathing and being. And while I walk around, taking photos and enjoying living it’s a rare day that the cancer is not in my mind somewhere.

flower


Right now, I’m in a minor funk. I told you guys how unhappy I was with my oncologist and how frustrated I felt with my medical care and finally I made an appointment with a new oncologist. Do you know how scary that is? Just think about your regular doctor dealing with your anemia or high blood pressure, etc. You still don’t want to have to change doctors do you? Imagine what it likes to think of changing doctors when you have some life threatening. What if this new doctor is no better than the one you’re leaving behind? What if they’re worse? What if something essential doesn’t make it over from the old doctor’s files?

So, yeah, I got up the guts to change oncologists. After another week or so I got up the guts to make the phone call to a new one and set up an appointment. I set it up for the Thursday after we got back from vacation, almost three weeks after the phone call. Why so long? Partly because I’m extremely scared of the unknown of a new doctor in a new medical facility. Partly because I have to take all my old records with me and I was scared of making that phone call to get my records.

flower


I had to call reschedule that appointment because I kept delaying getting my records. It’s now scheduled for June 26th. I just finally called today to get my records. They were nice and it was much easier than I thought it would be. In fact I get to pick them up on Thursday. But now we have another issue.

I got to thinking, the lady on the phone at the new place said the new onc needs all records, scans, everything, from diagnosis until now. Well, I had all of the first year or so done at Mayo, the place I just called only has me from my 5th chemotherapy forward. So I have to get more records. You can bet once I get them all I will be keeping copies for myself as with Dennis’s job we never know if we’ll be moving again in a year or two. So I just better make sure I keep all records current in my possession.

The nice thing is, that I probably have all the paper records from Mayo already, just not the scans. Because they always sent me copies of bloodwork, tests, etc along with a letter detailing my visit within a week of my visit. That part’s great, but the onc I’ve been seeing the last year or so has given me nothing. Apparently I have 53 pages to pick up on Thursday at 31cents a piece.

flower


This brings me to where I am right now and why I’m writing more than I normally do. It hurts. To see the words on paper “Chief complaint/reason for treatment: Stage IIIC Colon Cancer” and “. . .better than a 50% chance of it recurring. . .”. I cannot read my paperwork without crying. Wouldn’t you think, after all this time, and the fact that I feel ok right now that I could handle this stuff without crying?! But, I felt ok when I had cancer.

Can you believe that you can walk around and have cancer so advanced and still feel ok for the most part? How will I know if it’s back if I never had a clue it was there in the first place? My only clue, the only one I had, was that I had bleeding. I wrongly assumed it was hemorrhoids, which it never was. Now, after all this poking and prodding, according to my last colonoscopy, they did say there was some inflammation of the hemorrhoids so now, even though I have occasional bleeding, how do I which it is? I do not relish the idea of another “poking” and was looking forward to getting to wait another two years but now I fear the new oncologist will say, “Well if you’re having bleeding again. . .”

Cancer sucks!

flower

1 comment:

  1. I don't know how I stumbled upon your blog, but I'm glad I did! I, too am a cancer survivor, and I'm 41. I have read all of your cancer posts, and I know the fear of a new doctor. I am on my 4th oncologist in 5 years! I LOVE 2 of them, HATED the 1st, and was pretty indifferent on the 3rd. The reason for switching, other than the hate, was that I have had 2 recurrences, so I got passed along to people more "expert". I am now 20 months cancer-free, a record for me!
    I never felt sick the entire time I had cancer. It is only in the last 20 months, since my 2nd bone marrow transplant that I have been "sick". No chemo problems, no missed work, nothing. Now that I'm cured, I have the side effect called Graft vs. Host Disease, which basically is the new bone marrow fighting against the patient's body and shutting down major organ systems.
    Stop by if you'd like to know more. I'll be back to check on you!

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