Wednesday, November 23, 2011

The Road to this Decision part 1

The road to this decision has not been easy. I like to hope that making the decision was the hardest part and recovery will be a breeze in comparison. I doubt that is true, but I'm still hoping. To best explain my thought process, I'm going to take some more excerpts from my journal. The following entries span February 2011-August 2011

On Tuesday, February 8, 2011 while most of Green Bay was still reeling from the Packers Superbowl Victory and crowding the streets to welcome the players back to Lambeau, I was waiting in Bellin Hospital. I like to call this day my own little super surveillance day. I lined up all the appointments for my necessary surveillance on the same day, precisely six months after I had last nursed Adrienne to sleep one final time.

I had been quite frustrated with the fact that I had to put almost all surveillance on hold while I was pregnant and nursing. I could not find a single doctor within a 60 mile radius that would perform MRI or mammogram while pregnant or nursing--I tried. So immediately after I had finished nursing Aila, I called to schedule my MRI. They told me you need to wait until a specific point in your cycle so that it will be as accurate as possible. I was to call them back as soon as it returned. Well I waited and waited and my cycle never came. That's when we realized we were about to have another! It was a bit closer that we had originally planned. I had hoped to get one round of all tests in first, but it didn't work out that way. Adrienne came into our lives and all those things would just have to be put on hold for awhile.

After these two pregnancies almost back to back, my breast milk finally had a chance to dry up and now my breasts were ready for all the squeezing, poking, and prodding that I missed for the last few years. I was to have a clinical breast exam, MRI, and mammogram all within the same day. I couldn’t sleep the night before. A lot rested on this day. If all of the tests looked good, we’d try for another child later this year. If anything looked suspicious, my breast would be gone within the month.

The last mammogram I had prior to this was on June 8, 2007, the same day as the birth of a very special little girl. I actually remember running into visitors in the hospital elevator on their way to visit the new mom and baby while I was on my way down to my own appointment. After the actual test, I was told to wait in the small dressing room for the doctor. After a few moments, the head of radiology came in to talk to me. My heart sank when she introduced herself. I thought, “Oh shit.” But she just had to meet with me to let me know that the mammogram really didn’t detect much yet because of my age. She wanted to make sure I was aware of this before basing a ton of decisions on this test.

My mammogram went perfectly that day; as well as an uncomfortable, unnatural pose and a whole lot of squeezing can go. I walked over to the MRI center and began my wait. I had come prepared because I knew I had some time in between, I thought I’d get some correcting done in the meantime. I spent about an hour in the waiting room where I sat uncomfortable listening to an episode of Sex in the City on the tiny waiting room tv with a Grandma and her young grandchild. Back to the point...

My turn was called; I changed into the scrub gear and went back. You walk through metal detectors before entering the area. I lay down on the table; they positioned my breasts into a cone shaped device. The two technicians hands were all over pushing them, pulling them, positioning them just right. I had to lie there face down, shirt open, with my hands gripping the handle bars over my head. I was slid into the machine, cranked up the music, and heard that crazy hum. Kayla was right, when in doubt, turn the music up even louder. They tell you it’s going to be loud. But I really didn’t expect it to be that loud. I think I had a headache for another 3 days. Oh well, I got over it. Only thing I would do differently next time is wear warmer socks.

After this day, there was a short time in which my doctor was unable to confirm my original genetic test results. As troubling as it was at first, I think it helped me clarify my decision. Here's what I was thinking at this point:

March 19, 2011
They have no record of me ever taking the test. How is this? I remember drawing that blood. She did it at our kitchen table. I remember sending it in. I remember the specifics about exaclty when and how to send it so that it could be received and taken care of timed out just perfectly. I remember sitting at the kitchen table receiving my results. I remember Dr. Lynch’s annoyingly smug voice when he asked, “So what do you think? What is your prediction of the results?” You jerk You knew all along and you are going to let me go on saying how I don’t think I have it.

All of this and now they say they don’t have my results. Could it really be possible that they gave me the wrong results? All of this was for nothing? Or even if they did have my results but lost them in the midst—could it have been a false positive? What are the chances?

I’m so torn right now. I don’t want to get my hopes up, but I really do want to think on the positive side like I tried the afternoon of Dr. Lynch’s phone call. How spectacular would that be to never have to take the extreme measures, to not pass this onto my children, for my brothers to not have to be too worried to get their results, to be able to go more than 3 months without seeing my doctor! But at the same time, I’ve finally come to peace with my decision…another baby…two years later surgery…new boobs made from my own floppy tummy, not so bad of a deal. I just don’t want to feel the same thing again.

March 26, 2011
Well, don’t have to worry about that. Results were never lost. They just didn’t know exactly who to call at Creighton. Now I have multiple copies of the results. I can have them to share with whoever I’d like now. One meeting with Sumedha quickly cleared that up. I don’t know why I was avoiding that so long. It was a great appointment. She’s such a comforting personality. She asked a lot of questions about how I’m feeling about this and what sort of plans I have to make sure that I understand all of my options. Of course, I cried. I shared with her that I feel a tremendous amount of guilt for having this, for bringing this into Mitch’s life, for ruining our first years of marriage. She said that it is perfectly normal, that I need someone to lean on. She really helped me see how hard we’ve made this, just by not being open about things with in the Jadin family. If people talked, we could all understand this better. I left with a number of resources including the Little Pink Book by the organization Bright Pink, which looks pretty interesting. I like that their motto is “Not your mother’s breast cancer organization.”

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