My Mom says this… a lot. And she is usually right. I am a planner by nature. Mom, although sometimes reluctant to admit it, is a planner too. The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.
I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos. At least right now.
I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much. If you saw the legal size yellow pad on my desk you would chuckle. I have appointments planned until February of 2013. And, at first glance to list doesn’t look too bad. I was proud. I got to these appointments early. They are all routine. They will all happen after school or on vacation days. My terms. But then we get to the unscheduled ones… and the follow ups… and the new visits. That’s when things start getting hairy.
I called the oncologist‘s office today to get the results of my MRI. The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour. She said, “Everything is benign.” I wasn’t sure to be relived, or panicked. What “everything?” So she started with telling me my liver is just fine. (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.) She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.
The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen. Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.
Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.
So I said, “what does this all mean?” That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.
“Can I have a copy of the report?”
“I would rather not send it to you until you speak to the doctor. I just wanted to reassure you there were no malignancies. She may want you to come in.”
Which is where I did laugh out loud. Come in – to hear a summary of what I was just told? No thanks. Just tell me what I need to do next and I will get it done.
I looked at my nice yellow pad, where September previously had no appointments, and I see the colonoscopy written in for the 18th.
I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year. There goes that planning again. Maybe I will keep my spleen and its harmatomas forever. Maybe they will make me have it out. Truth is I have no idea. And I can’t plan for it at all.
School starts in a week or so. My life apparently doesn’t always jive with the school calendar. I will have to roll with it.
More importantly, Pop’s birthday is tomorrow. He is 93, and a true inspiration. My family will gather at my house to celebrate him. I couldn’t be more excited.
I will get my results Tuesday, and life will go on. It will all work itself out, as it has for… well forever. I will try to keep the planning in check. I really do try.
The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!
beatingcowdens 