dry run + first day of treatment

I'm a liar. I said I was going to post on Monday and I didn't. Sorry about that. I meant to tell you all about the 'dry run' and how it almost wasn't a 'dry' run but then I thought better of it and thought I couldn't tell you the story without mentioning my bladder and urine a whole bunch of times. So I decided not to write it.

But today I decided I wanted to because it was such a drama filled day, it warrants documentation.

Warning: If you are uncomfortable with me talking extensively about my bladder and how incredibly full it is - skip to where you see the ***. I'll bring ya back in when I'm done with the pee story.

Ok, so for the 2 of you that are still with me.

Yesterday's dry run was AWFUL!! Oh my gosh, seriously awful. They tell you to come to the hospital with a full bladder. My appointment was at 11:40 and was supposed to last 15-20 minutes. They line me up with the current purple sharpie marks I have all over my backside- make new, uglier, bright red marks on my butt cheeks and then do some x-rays and scans to confirm that this is the best position for me to be in. I was told I would have two female techs. Oh no, I didn't. One male and one female. I kept waiting for the kid to leave the room but he was apparently there for the long haul and got to see me in all my fabulously bare naked butt glory.

Here is the thing, people say that once you have kids your modesty goes out the window. Not mine friends. It is still terribly embarrassing for me for random strangers to see me in various states of undress. So this is just gobs of fun for me - all these random people checking out my super jiggly behind. Oh gracious.

Ok so I'm all lined up and they start taking xrays/pictures/scans/whatever. It feels like it is taking a really long time. I am getting progressively more uncomfortable. They have me lying on my belly so I am basically putting all this pressure on my very full bladder. They don't tell you exactly how much to drink and I drank way too much. But the kid had me all freaked out because he told me that if I don't drink enough, I'm putting my insides in the way of radiation, unnecessarily exposing them. But if I drink too much, it can push other insides in the way too. It's very stressful to think that my future continence depends on me drinking an unspecific amount of liquid to make for the perfect outcome. Just give me how many ounces and I will be obedient! Ugh.

Anyhow, I'm supposed to be lying perfectly still but it's all I can do not to do the potty dance. They finally come in the room and tell me the machine, the 6 million dollar machine, is not working. The computer is down. They have to reboot it. It will take 15 (15!!!) minutes to reboot and can I just wait there.

Um no. There is no way.

So they let me get off the table and warn me all about the dire consequences of releasing too 'much'. So I run to the bathroom then get back on the table. They line me up again.... which is like a 5 minute process of them moving my buttocks around and pushing and pulling the sheet underneath me while I try to be as deadweight as possible. So they line me all up and then tell me the machine STILL isn't working. Another 10 minutes go by and I have to run to the bathroom again. Oh my gosh, I felt so awful!!! I kept apologizing but I was really nervous that I was going to ruin that 6 million dollar machine!!

Anyhow, it finally starts working, I feel comfortable and it's time to start again. I figure it will just be like 5 minutes, but they tell me it will be 15-20. Oh no. Oh no. "I cannot last that long!" I croak. At this point, the kid is so annoyed with me. The girl is nice and feels so bad for me but the boy is annoyed. He is nice but I can tell he is annoyed. Anyhow, I tough it out, I make them count down the minutes, they are telling me every 30 seconds that I am doing great, I have tears in my eyes because I am so uncomfortable but we make it through.

I'm finally done and as I'm running to the bathroom, I see a clock. It was 1:15. I had started drinking my water at 10:45. I had to hold my VERY full bladder for two and a half hours. No wonder I was in tears!! Oh my goodness, it was awful!!

The worst part about it was that it made me feel like such a wimp. I have to be tough. I gotta be tougher than the cancer. I can't be a wimp. Stupid bladder and stupid machine made me feel weak and had me doubting if I was going to be able to handle all the crap coming my way. It wasn't just physically draining, it was emotionally challenging. It sucked.

*****After the thank-goodness-it-really-was-a-dry-run-dry run, we had a follow up my my oncologist Dr. D.

Dr. D was on way less caffeine this time and a lot easier to understand this time around (he has an accent and I am accent challenged.) We talked a bit more about my post surgical chemo. I will have 4.5 months of chemo after surgery. Every three weeks I will have a round of chemo, totaling 5 rounds. I will have an IV chemo medicine at the start of the three weeks (no port - I will just get an IV every time.) I will take the pills I am on now for the first two weeks and then take a week long break, then I will start another round. Does that make sense? I will not lose my hair with this double dose of chemo.

I was trying to get a timeline of when these rounds will start. 3 weeks post surgery he said. Post tumor removal surgery or after the surgery where they remove my temporary bag? He said I will likely have to wait to have the temporary bag removal surgery until after the chemo is over. He is concerned that if I delay chemo in favor of bag removal, then the cancer will come back in that time. He has seen it happen before. He will talk to my surgeon but it is likely that I will have to have the temporary bag for as long as 5 months.

That was not my favorite thing to hear.

I had heard as long as 3 months and as short as 6 weeks.

5 months (3 week recovery + 4.5 months chemo) is not what I was hoping for.

Obviously it is WAY MORE IMPORTANT that I am cancer free. And WAY MORE IMPORTANT that we get it all now and I don't have to do this EVER EVER EVER again.

It's tricky because all of these fabulous doctors have their own prerogative. Their own agenda. And my body is getting batted back and forth between all their preferences and opinions. It's a tricky thing to navigate.

So that was yesterday. Do you see why I didn't want to write about it right away?

Today was my first day of treatment.

I had an excruciating morning.

It was extremely difficult for me to take those first 3 chemo pills. I had a pretty good crying fit. I think I punched my bed a few times. I punched my bed because I was on my knees pleading for help. This is hard stuff.

It felt, I don't know, against human nature to take something that you know is going to wreck your body for a little while.

It made me think of a few months ago when I went on a campout with the young women in our ward. We went rappelling and my friend Steve Heywood was the guy running the rope. He was telling each girl how to feed the rope through the carabiner to put herself over the edge of the cliff. He said something like "It goes against human nature to go off the side of the cliff. Our first reaction is to hug the cliff but that gets us nowhere. You have to move in order to progress."

That isn't a perfect analogy because rappelling is AWESOME and super fun and this, what I have going on here, it is not super fun. But that experience kept coming to mind. It goes against human nature to start this process. All the signs point to a scary outcome - I can't see the tumor, I can't see the damaged cells, but I will sure as heck notice the side effects of my treatment and have to suffer through them. My instinct is to hug the cliff and stay where I'm at. But that gets me nowhere and is actually a really dangerous place to stay. I've just got to be tough and take that first leap.

I calmed down, took the pills, washed my face and tried to man up. I didn't cry again.

My radiation appointment went WAY better than the day before. It was 8 minutes total. They did the whole lining up my lines thing again, I lay perfectly still with the 16 oz of water in my bladder (because if you google it, which my husband did for me as I drove to the hospital, that is the average capacity for a full bladder) and after a bit of whirring and clicking, we were done. No pain. My skin (yes, on my bum) will get burned, like a sunburn, and sensitive and stuff but not today.

I have noticed that I feel just kind of ick today. I don't know if that is because I am expecting to feel gross so I am, or if I actually do already feel the side effects from the medicine. I am slightly light headed and a bit nauseous. I feel almost like you do when you are first pregnant, I'm not super sick yet but I don't feel quite right.

It is altogether possible that I have a flu bug though - my baby woke up from his nap and started throwing up. Haha, fantastic. He was running a fever of 101 and when my 9 year old came home from his summer camp, he has a low grade fever and a huge headache. Of course. Good times over here folks!

So the plan is 6 weeks of daily (Mon-Fri) radiation appointments. I take my chemo pills on the days I get radiation. My last day of treatment is August 1st.

I have a ton more to write about (Girls Camp! Heber! iPad mini! Lashes.) but it will have to wait another day. I am super tired and have to start not being an idiot and going to bed super late. Did you follow that? I'm usually a night owl and stay up super late but I have to cut that out. I have to take good care of myself. I have to get better.

Hey, you're fantastic. Thanks for checking on me. Thanks for caring. Thanks for reading all about my butt problems!

Oh, and I almost forgot.

The compassionate service leader in my ward has her hands very full taking care of our family. She is organizing meals and childcare for the next 6 weeks. To make it as easy as possible, I asked that she create an online sign up for meals because so many have so generously offered to feed my fam.

Here is the link: www.SignUpGenius.com/go/10C0A44AEAE22A0FC1-meals

If it is already full, don't worry. I will be in great need of a lot of help once I am having surgery and doing the more intense chemo. Once that is all figured out, I will put the link on here.

I just can't even begin to thank everyone for the kindness and willingness to help us. I am just - there are no words. I am so lucky. xoxoxo