What a Difference a Year Makes...

Hard to believe my game began a year ago...Feb. 14 to be exact. Although I found my lump around the beginning of February, the surgeon told me "This is going to come back as cancer" as I was lying on the table getting a biopsy. Earlier that day, I told Julie and Dave not to bother coming, I knew it would take time to get the results back. After hearing those words, however, I asked her if I could just have a minute. You think you're going to hear those words, but when you really do, it's surreal, overwhelming and totally frightening. Of course, Dave and Julie came immediately as I called both of them and sat with me as we decided next steps. They followed me home- closely, probably to make sure I wouldn't drive off the road. We shared Valentine's only with Harrison and Bridget that night. But, Dave actually gave me the red Blackberry, too, which came to pass as the perfect gift for my upcoming year.

Well, this Valentine's Day, Grandma and Grandpa babysat as Dave and I went out for a wonderful dinner, bottle of wine and silly date movie. We laughed a lot and it felt like a real date (remember those?). Been a long time since them days!

My games are easy these days....a follow up with my radiation oncologist, 5 more appointments to go for receiving herceptin (May 20 is my final day- yippee), a check-up with my oncologist- who gave me a prescription for tamoxifen (an oral chemotherapy drug I get to take for the next few YEARS), AND a reacquaintance appointment with my plastic surgeon. I had an expansion/fill and only have 2 left to go. My skin looks good, but the stretching is sore, especially on the left. By the end of May I will be good to go, but am scheduling my surgery for permanent prosthesis for the summer (that's fake boobs for all you fans out there). I finish the school year June 11, am taking a trip and then will have surgery right after the 4th of July. Recovery from this will not be as taxing as the first, thank God.

My days are filled with schoolwork, home life and the mystery of our sweet, beautiful Bridget. She is under the care of Dr. Smith at Rush, but we have also consulted a colleague of his, Dr. Baron, a pediatric neurologist, for further investigation. Both doctors suspect an epileptic syndrome called Mitochondria Myoclonic Epilepsy. We await the DNA blood test to determine if this is her diagnosis. It can be treated with anti seizure medications (which she's already taking), as well as, vitamin supplements to help her cells with the production of enzymes that she lacks. If the blood work comes back as normal, we continue the investigation through a spinal tap and skin biopsy. We hope and pray for the former because the treatment plan is realistic. As for now, we battle, breathe cautiously, wait, watch and pray to God the medicine she's on works and doesn't cause any more side effects. Although they are powerful and miraculous, they are not without fault. Bridget's hardest battle is keeping her balance, aside from controlling seizures, communication, and overall development. Some days are better, esp if it's not a sunny day. Her reaction to flashing sunlight is horrible and we really want this to subside as well. I'll admit - I'm greedy- I want cloudy days. Who would ever want that? A friend told me it figures- since I was so into the vampire/Twilight epidemic.

God Blesses us everyday. I sat with Harrison as he fell asleep tonight and thoroughly enjoyed watching him drift off through every even, sweet breath. Bridget laughs, dances to music and is ticklish, Harrison is taking after Dave with a crazy sense of humor, I have good health, a helpful husband (yes, I nag, too) a job and lots of wonderful people in my life. This entry is a bit more serene and I apologize. Just remember...a year can make all the difference. Where will we be a year from now??????

My love to all the devoted followers that are still out there!!!!

3 comments:

Deborah said...

The photo show continues sweet. Your patience and resilience are still inspiring. Both of you! As always, all our love and prayers.
Debby

beverlypreuss said...

Thank you, Sara, for the update. But also thank you for words that are so encouraging to us all- indeed who knows where we will all be in another year. The journey of life is not a boring one for sure! Glad you guys were able to have an awesome date night this Valentine's Day! :)

Schuster said...

I know this comment is so late in coming, but I think of you so often. I am patiently waiting another update on you and Bridget but know we are still following and thinking of you!