afraid to be hopeful

Okay!  It was an exhausting week...or at least an exhausting trip to Rochester.
As always, we were overwhelmed by the number of people and the sadness and hardship that is everywhere at Mayo. It is eye-opening and heartbreaking and hard and real. And we are counted in that group. I'm sure there are people looking at us and feeling our struggle and hardship among the many.

So, the big part of this visit was to have me thoroughly scanned. The surgeon wanted a PET scan, MRI...and a CT scan (will get to that in a min). I had bloodwork at 7am, and went straight from there to my PET/MRI appt. They let you know in advance that it will take 2-3 hours, so Ben had lots of time to fill. I told him my order from Brueggers the night before so he would at least have that errand to kill some time. And he brought a book. Smart guy. They weren't joking about how long it would take. They take you back, you put on your hospital gown and the socks they give you with the grippy bottoms and they get an IV in. Got it on the first stick, so that was nice. Then they take you back to a little room where they then inject you with a dye that takes 45 min to circulate through your system. They close the curtain, dim the lights and there I sat. So...i tried to take a little nap. Then they come get me, have me use the restroom, and head into the scan room. If you've never had an MRI, the "scanner" is no joke.  It's a big tube that feels exceptionally small once you get in there. I laid down on the table (like lying on a cement slab) and they put ear plugs in my ears, secured this odd contraption around my face, put pads around my arms to keep them close and a pad under my knees for "comfort" (HA). I don't consider myself claustrophobic, but heading into the tube headfirst always freaks me out.  I quickly close my eyes. MRIs are really really loud. It sounds like you are in the middle of a construction site while you are in there. I told Ben I tried to picture myself on one of the chairs at Kings Pointe (hard plastic and uncomfortable) watching the boys jump off the diving board. Or i would try to change the noise of the machine into a different sound (something less like a jackhammer being used right next to my ear).  Mind over matter....
After the MRI is over they bring you out briefly....long enough for me to sit up at least and roll my neck.  Then back down with a different head contraption for the PET.  Breathing instructions this time. The first time they had me hold my breath I started to panic cause it was for much longer than i anticipated. And still with the noises. I started to count how many times the "hammer" would pound while I held my breath.
1. It gave me something to focus on and
2. It made me less anxious about how long I had to hold my breath
I was in the tube for a LONG time. I honestly don't know how long exactly...but they did tell me the PET would be 40 minutes.  I felt like the MRI was longer. Again...if you had any claustrophobia you would surely need to be sedated.
After that we had some time before the appt with the oncologist at 1:45. Back to the hotel so I could eat my well-deserved bagels. A little rest, and then we went for lunch before heading to the waiting room.
We literally sat down about 2 min and they called us back. I got weighed and measured. I'm 5'5" for anyone interested (i asked).
Then they take you to another room and you wait. And wait.
Oncologist came in. He's a young guy who is actually doing his fellowship. He consults with the actual oncology dr before he comes in. We chatted, he asks questions etc., and then we look at the scan.  Head to toe. Nerve-wracking waiting to hear what they saw.
The words "there are no other signs of cancer anywhere in your body" came out of his mouth. My heart lept.
The tumor is unchanged, but it didn't "light up" quite as much as we expected (good i think?).
"Did you have a CT scan?" he asks.  Uh....no? I wasn't scheduled for one. Well, apparently they tried to get ahold of me earlier in the week and get it scheduled but I missed the call or something.  SO...lets do a CT scan tomorrow. The surgeon wants to make sure he has a clear image of the tumor.
We will meet with the surgeon after the oncologist but he tells us that I will need to do another 2 rounds of chemo...meaning 2 more cycles of  4 weeks on/2 weeks off.  This news makes my heart sink.  12 more weeks.  8 more weeks of chemo.  Ugh.
He leaves and we stay in the room to meet with the surgeon.
We wait.
And wait.
And wait.
No joke probably an hour? It was a long time. Ben thought the cleaning people might discover us still in there waiting.
Surgeon bursts in. Why does it seem like surgeons always burst into a room?
Anyway, he has an entourage...2 other doctors (?) and a scheduler with her laptop.  He sits down and wants to hear my story from the very beginning...back to 2008.  He wants to see my scans from 2008. He gets a picture of my aorta and blood vessels branching off.  He draws a picture of where my tumor sits and what surgery would entail. It is very risky. Blood vessels (veins? i'm not good at this part) would have to be spliced and re-routed to keep my liver and kidneys functioning. My stomach would have to be removed.  REMOVED.
"you can live without a stomach" he says somewhat nonchalantly.
Normally, I would not be a candidate for this surgery. BUT.  I am young. I am otherwise healthy. I am small.
He does this surgery for pancreatic cancer. He has done this before. He is confident he can do this surgery - it is a viable option.  A.viable.option.
Still risky. Things could go wrong. Veins/vessels might not cooperate etc.  Obviously...all surgery poses risk. this one a bit more.
They are getting me in for a CT scan the next day. We have time to think about this option because regardless I have to go through the additional chemo and then will have radiation.
And they want me to meet with the "gut failure team". If i have surgery, I will have chronic diarrhea for the rest of my life. "Actually, do you have that now?" he asks.  I say yep....he's not surprised. The tumor is causing that.
He and his team leave the room and our oncology fellow returns. I'm sure we look shell-shocked. He gets it.
He tells us we have time to make decisions. He also says that another option is to get through chemo and radiation, and then leave the tumor and continue to treat this as a chronic illness.  Chronic cancer.  Hm.
He doesn't know exactly what that looks like treatment-wise. A body can only handle so much chemo.

CT scan at 8am the next morning. Another IV. A much less scary tube (like 1/4 tube) and a much quicker scan. A little recovery time and we headed home.

SO....good news is that the scans show no other signs of cancer anywhere else. This is a huge relief.
Bad news is the next 12 weeks of chemo. We will head back up to Rochester sometime in May and will talk with radiology and the gut failure team. Based on what the surgeon and oncology fellow said we are guessing 4-5 weeks of radiation. Then we will need to decide what we are doing. Surgery? or Chronic cancer?

 I feel like there is hope. I could actually make it through this and get to have the time that I've been praying for. It scares me to think that i'm looking forward to a future that might be stolen away by this disease at any moment. I hate feeling scared by hope.

I'm trying to dive into scripture as it seems to help. I use google. I write down verses that speak to me. I can't seem to memorize anything (blame chemo-brain).  I'm even taking a crack at reading the Bible.  I survived Numbers, so I'm feeling fairly optimistic. I feel like there are some people who are so rooted in their faith and can talk so eloquently about God, Jesus, love, hope, trust, FAITH. I don't feel like i'm one of those people, and am not necessarily trying to become one of those people, but i do want to gain a better perspective, feel a better connection, and continue to become more faithFULL. My faith in HIM has helped to keep me going. helped keep me calm. helped keep me positive. helped me be so aware of the many blessings in my life (daily thanks you guys...works wonders).

This is what I wrote down this morning as I started Deuteronomy -

But if from there you seek the Lord your God, you will find him if you seek him with all your heart and with all your soul.       Deuteronomy 4:29