26 April 2013

Roller Coaster

It's funny how I have one idea of what I want to write at the start of the week and by its end, my thoughts are so different. I tend to write my posts in my head before I commit them to "paper", I had this week's done until another curveball was thrown Thursday afternoon.

My original post was going to reflect on how my thoughts and opinions on other people's behavior had changed. How we see adults have temper tantrums all the time..... the crazy coupon lady going off at the checkout clerk at Wegman's, the customer who had something wrong with their meal taking it out on a waiter while out to dinner, and yes, those moms at the playground. I usually roll my eyes and ponder why they feel the need to overreact to what appears to be the smallest infraction, occasionally meeting the eyes of another who is probably wondering the same thing. Then while at our second visit to NIH this past Monday, I finally understood. A lady who was accompanying her parents, one of which was clearly the patient in need of the services offered there, was having a meltdown over getting an extended visitor badge. Lashing out at anyone and everyone she could, including her parents, she yelled "don't you understand?" To the man behind the counter. And yes, yes I did. Watching the reaction of the others nearby, they all did too. Dealing with everything we have, it has been all I can do not to be this woman, to keep it together especially in public. In that moment, I was thankful I was past that stage, or so I thought I was but after the return call from NIH, I want to have a temper tantrum of my own.

Things this week have been pretty good, C worked in the yard both days of the weekend.... Sunday's work was accompanied by friends helping and visiting. We drove down to NIH on Monday, followed by two days of him driving into the office..... without him having any real complications or pain flare ups. The doctor at NIH said everything was looking good and we scheduled a follow up for July. I started thinking of closer-by vacation spots that we might try to get away to this summer, thinking we may make it to TX to visit family for the holidays, I let my guard down and allowed myself to dream of a "normal" life....... then we get a call.

There was a small fluctuation, or what sounds small to me, in C's PSA numbers..... this time in the wrong direction. The doctor called, more concerned than we thought he should be over this single reading, now 1.49 from the 1.09 we had before. But apparently a change of that amount in just three weeks makes them want to look closer. So after riding the wave of calm, now we are back to more tests and scans, and waiting, and fear, and hope, and so the roller coaster takes up speed for another round.

16 April 2013

The New New Normal

Overall, this week has been a really good week.  C got his blood work back from NIH, and his PSA is down to 1.09, normal is anything below 4.  When we first got the diagnosis, he was at a 12, then in February (with 3 months of treatment behind him) it had dropped to 3.  The downward trend is very encouraging, it will likely never go to zero, but we'll take normal range and treasure it for as long as we can.  He made it in to work this week, twice..... the 50 minute drive each way has been a huge obstacle in allowing him to return to his office. But he made it largely unscathed, except by his wife who wishes he would remember to send a quick text to let her know that he got there without incident.  His pain has become more manageable and even his pain doctor feels it is time to have him start backing off the high doses of pain medicines as his body has been responding well to treatment. 

So, where does all this leave us?

We have spent the last couple of months adjusting to the new routine of Daddy being home, but not home, but home.  He has been there in a pinch to help with the girls with lunch, a diaper change, a much needed hug.  We've had to practice being as quiet as church mice when he has a conference call or when he needs to focus on his work.  But with him being gone these couple of days, back to work, back to "normal".... I am left with a surreal experience.  Still in the routine of taking the girls where we need to go, activities, friends, and everything else, but returning to an empty house.  I am thankful for the girls innocence, as they exclaim proudly that we beat Daddy home from his doctor's appointment when we returned home and Daddy's car wasn't in the driveway..... and that they are going to hide until he comes home and finds them.  I explained that Daddy felt good enough to go to work, so he won't be back for quite a while and they seem genuinely confused that he won't be home until after dinner.  They don't seem to remember the "old" days.  I also hate to admit that in some ways I kind of liked the new normal, obviously not that C has cancer and the enormous toll it is obviously taking on all of us..... but there has been a huge change in our family.  The girls have had the chance to spend more time with Daddy, sharing happy, little achievements as they happen, snuggling in his lap as he puts out the latest fire at work via email, having the bedtime routine consistently involve him. 

We have often reflected that we took a lot for granted before all this happened, and if there was a blessing to be found in all this, it was that we now cherished our family and our time together more.  It is so easy to go along on the day to day, forgetting to stop and be grateful that we have what we do.  Now I think I have been taking for granted the recent time we have had together, that he is here where I can keep an eye on him.  I can remind him to take his medicine, try to rub his back to ease his pain, be a sounding board when he needs it.  Even just having my best friend around to share a quick joke or a minor annoyance that would otherwise be forgotten by the end of the day has been a gift.

With this latest development in our normal, simultaneously I wonder if I have finally woken up from this nightmare and the last four months never happened, then back to the "what ifs"of our reality.  I know I should be all sunshine and rainbows, excited at the movement forward in his body and attitude, but with the foundation of blissfully ignorant stability yanked from under my feet and replaced with quick sand.... it is hard to take comfort in where things are today.

With all that said,  I am choosing to take today and be thankful for all the blessings that it has brought to our family.  I can be sad later, I can be mad later, I can be fearful later...... I don't want to waste today worrying about the what ifs of tomorrow. 

07 April 2013

Reality Bites

“The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.” ― Maya Angelou

Denial, might be too strong word, but as denial is one of the phases I am supposed to be going through according to all the books, I guess it is somewhat true...... auto-pilot seems to be more accurate. I know I have been going through the whole range of emotions and foolishly thought they had finally evened out, then I got hit with another cold slap of reality this past week.

Everyday I wake up prepared for crisis mode, never sure of what level it may be.....then keeping the girls' schedules normal with their dance, gymnastics, horseback riding lessons, school, play, while also catering to my baby girl... every morning I just try to take on only what I have on the calendar for today. I don't focus too far in the future, I can't plan vacations until we get C's pain under enough control that we can be in the car for a decent amount of time, can't plan a trip to visit family in Texas for the same reasons, even accepting the offers of friends to help with the yard work has fallen on the shoulders of good friends to organize and arrange as I can't seem to focus that far out. Play dates are hard to put together as I don't know how C will be feeling day to day and I hate leaving him when he is having a rough day. I know it is easier on him to have a quiet house on those days, but it is still a struggle for me as I wish I could be in both places at once.

So I don't know if denial is what I walked in to our appointment at NIH with, but I wasn't quite in the right place to hear the doctors talk about C's cancer and what exactly we are up against. Yes, I have repeated our story many times... used all the right terms, explaining why they aren't removing the prostate tumor, how the hormone therapy he is on reduces the testosterone in his body to slow the spread to his bones. But hearing a doctor talk about just how we will be fighting and managing this cancer for the rest of his life brought into focus that this really is my life, this has really happened, it isn't some awful dream I get to wake up from. There is no magic bullet that will make it all go away, this is our new reality, our new normal.

After processing the events of this week, and revisiting the pain, sadness, and fear I thought I had moved past, I have found a renewed energy to fight. I want to research all that has been published about fighting this beast, I want to change our diets to give C's body a better chance at not only standing up to the cancer but to the treatments as well, and to get our house back in order and not let it stagnate in the chaos it's become.

I took the girls to church this morning, dropped them in their respective classes, then settled in the room they reserve for nursing mommies to feed baby T as she had woken up just as it was time to walk out the door. As I was sitting in the little room following along with the service on the overhead speaker, I opened the Bible app on my phone (yes, they have an app for that....) to follow the scripture from which the pastor was reading. I don't know why, but the app opened itself to the story of David and Goliath. I have to admit to drifting away from the pastor's sermon and reading that story several times. I feel like that is exactly where we are. This cancer is huge, scary, determined.... but we have to go in with faith and fight the best we can, and hope for the same outcome.

Also with the realization that we only have today and that tomorrow will always be uncertain regardless of our current circumstances, mortality being more in focus than ever, I need to remember how to stand on my own two feet. C takes amazing care of me, provides for our family so that we never need for anything, as curmudgeon as he can seem to outsiders I can't remember a time he ever said "no" to anything I have wanted for myself or the girls. To begin conquering my fears, I really need to learn, if not take over, the areas of our household long since delegated to C like outdoor maintenance and finances.......... though I think I'll take a chance on tomorrow for learning to change the tires on my car.