Decisions

Dean and I recently made a really big decision. Although I am very excited about the possibilities ahead of us, the work involved may cause me to have a nervous breakdown! If only I could put our lives on hold for the next month or two.

We're hoping to have the house on the market by June 1st. You know, in the midst of Angela's graduation week and all that goes with it. We need a different space but are not going far. We don't want to change any of the kids' schools. Although we haven't found a new house yet, I have absolutely fallen in love with one I think is perfect for us. I love the space, the lot, the location, the kitchen, the bedrooms….everything… It makes me giddy thinking about it. But we can't even make an offer on anything until June 1st. And, well there is this small problem with Dean's opinion of it. We'll see if its even still on the market at the end of the month. 

Making tough decisions is tough

When I was diagnosed with breast cancer I was a little bit excited about the opportunity for a boob job. Not that a double mastectomy is any cake walk, but I was trying to find the positive…if there is a positive in having breast cancer.  Then I found out I didn't need to do that for this type of cancer and was relieved I didn't have to go through that surgery. Its a big deal!

Several weeks later my oncotype came back, giving my my risk of recurrence which was somewhere around 25%…too high to ignore which is why together Dean and I opted for chemotherapy. Still, there is no real answer as to whether or not chemo will make a difference in my recurrence risk. It was a coin toss, really, and we chose to toss the coin. We chose to use whatever weapons were made available to us.

I have one more test left to come back, which is genetic testing. This is important not only for me, but for other members of my family - like my sisters and nieces - so they can make healthcare decisions for themselves. If my genetic testing comes back saying that I have the BRCA 1 or 2 gene, then I'll be having a mastectomy in September. If I don't have either of the genes I'll be having radiation starting sometime around the end of August.

And here is where my thought process has changed.

Chemo sucks. Some people think "Oh she only did four rounds, that's not so bad!" In reality, there are only four rounds of this combination given because it is HARD on your system, and then you need a full 21 days for your body to recover in between rounds. This has been really hard. I knew it would be hard. I "volunteered" for this because I don't ever want breast cancer again and Dean and I both wanted to do whatever we could to prevent just that.

Now I'm almost done. I have one round left. After each one, once I get to about day 10 I think, "There! That's done! I can survive 3, 2, 1 more of that." But really? Honestly? The depression that hits on about days 5-7, when I am so sick I am not functional at all, is just too much for me.  I cry. I cry a lot. I mostly cry alone in bed or in the shower so I don't bother Dean or freak out the kids. And I whine, probably a lot more than I realize. I cannot begin to explain to you what "bone pain" is like. It is like my bones are going to explode from the pressure inside and I would truly feel relief if they did just that. I can tell you I have never before felt "fatigue" to the level I feel after chemo. How do I describe the feeling that my arms and legs have been filled full of lead and it is all I can do to stand up from a chair and walk from the living room to the kitchen, and then think about going back. The damage done to my colon is likely permanent. As of right now the only way I can be more than 50 ft from a bathroom is if I haven't eaten for several hours. I could go on an outing and be fine without any problems, or I could need a bathroom every 15 minutes without enough time to walk 50 feet to get there.

I know that I could go 2, 5, 10, 20, 30 years and never develop breast cancer again, or I could hear those words "I'm sorry, you have breast cancer" just one year down the road. What if I developed a different type of breast cancer? (this happens quite frequently!) What if its not caught in time and it gets to my lymph nodes? That becomes a whole different type of situation.  I don't EVER want to do this again, and I don't ever want the risk of HAVING to do it again. I don't want to put my kids through it and I don't want to put Dean through it.

I don't know what to do. I think I want them off. Although a mastectomy does not change my survival rate, it does reduce my risk of recurrence. I want ZERO risk of recurrence but unfortunately that is just not possible. Even a mastectomy leaves some amount of breast tissue where cancer can develop. I hate not knowing what to do. Every time I ask God for clarity about something along this journey I find myself in some "gray area" group, where a coin toss is the only way to make the decision. I'm not seeing clear answers and I don't know that I trust myself to make the "right" decision. Maybe there isn't a RIGHT decision. Maybe there is only the right way for ME.

Decisions on Bussing

When we moved here Angela was in 2nd grade. Because the special ed. classroom she attended was not in our neighborhood school, we didn't have an option for her to ride anything other than Special Ed. transportation.

Then Angela moved up to the middle school. She started out on the regular bus but due to some "issues" she was having, I started driving her to school instead. In 8th grade she started back on the regular  bus with her typical peers, which she loved.

Angela continued on the regular ed. bus for 9th and 10th grade. But, at the end of her sophomore year, during the last couple weeks of school, she started making comments about some things that were said by other students on the bus. None of it was serious, at least not what she repeated to me, but it did raise some red flags. I talked to her teacher who talked to the bus driver who had similar concerns and made some changes.

Lets talk about vulnerability a bit. Angela is a 17 year old girl with significant cognitive delays. She rides the bus with near-typical teenage teenagers...lots of them boys. She loves to sit in the back of the bus where the "fun people" sit. Do you see where this could go?

Eventually the school year ended, we moved into summer and I didn't have to think about the bus anymore. But suddenly we're only a couple weeks from school starting. I have huge reservations about sending Angela on the regular ed bus this year. What about her peers from the special ed class? Which bus do they ride? Will she stand out from them if she's riding the special ed bus again?

I asked around. Turns out some of the other parents have had the same fears, only sooner. So, my reservations were validated, and I made the decision to put Angela back on the Special Ed. bus this year. Then I remembered something: Angela could care less what bus she rides to school! As long as A bus shows up to pick her up, she's thrilled.

This year the bus schedule will be awesome! All four kids catch the bus within 5 minutes of one another. We'll be the only house on the street with busses lined up. I think we'll make it the morning coffee stop for the drivers and bus aids. ;-)

Sweet Nothings In My Ear

Terri, over at Terri's Special Children Blog posted about an upcoming movie. Being an interpreter, this one is close to my heart, and a struggle I've seen played out in many families.

"Sweet Nothings In My Ear" is the story of a couple facing a difficult decision. Suppose your child was deaf, but could have an operation (not without risk) that could make him hear again?

Dan Miller (Jeff Daniels) and his wife Laura (Marlee Matlin) only wants what's best for their happy and healthy 8 year old son Adam, who's been deaf since age 4. Laura opposes the surgery - a cochlear implant. Being deaf she doesn't consider it a disability, and believes an operation, regardless of outcome, would make Adam feel that something was wrong with him. However Dan, who can hear, misses talking and listening to his son. For him and operation is worth the risk, believing Adam's life would be easier and more complete if he could hear.

This is a devoted family facing a moment of truth. Together or apart, Laura and Dan must make a life altering decision on behalf of their son. You won't want to miss this powerful presentation from the Hallmark Hall of Fame on Sunday April 20th, 9/8c on CBS.