Disconnected

• 5-FU pump disconnect at Siteman West County

Buh-bye fanny pack, see you in 2 weeks.

Early this year we put a deposit down to join a vacation that Hector's family had planned and right now... we should be packing for Scotland, Ireland and England. It's a difficult tour agenda for a healthy person, with long days, lots of travel by bus, train and boat, and with set meal locations and menus. It would have been challenging for me. We made the decision a couple of months ago that it wasn't going to happen for the two of us. So for now, I'll be living vicariously through his family's pictures, but it still makes me sad to think about missing out on all of the beautiful places they'll be visiting.

Chemo day

• Bloodwork and treatment (Folfori #4 - includes Irinotecan #6 and 5-FU) at Siteman West County

Apparently my body finally got the recovery (and the Neupogen) that it needed. Hooray!

Call Me Crazy

During this extended break from chemo, I have been trying to fill my days and nights. Nothing too crazy until maybe today. It was my womens outdoor soccer team's last spring game. 7 versus 7, small field, last game, results don't mean anything, relaxed opponent. I had paid $65 to play this spring and I hadn't played one minute of one game, I hadn't even made it out to watch a game. I wore my Survivor buff to protect my head and I think the other team gave me plenty of space, but it was nice to kick it around a little, maybe 25 minutes. I had a decent assist, so there's that. Who knows when I'll get a chance like that again, had to just go for it.

 
When I first saw the pictures that Hector took, my initial thoughts were all about my weight being down, even though I am in the healthy BMI range for my height. But yet I am still 15 pounds over the imaginary perfect weight that I carried around in my brain during my 20s and 30s. How wrong I was.

how low can you go

• Bloodwork and Neupogen injection at Siteman West County

My ANC is DOWN from Tuesday. DOWN. Has anyone seen my neutrophils? #missing

We're almost 4 weeks out from my last chemo and my bone marrow is just not recovering. So. It was back to Siteman this afternoon for a Neupogen injection.

best laid plans part two

• Bloodwork and treatment at Siteman West County

It's a no-go for treatment today. Today's ANC was again too low for treatment so we'll recheck my labs on Friday and shoot for treatment again next Tuesday. It is both frustrating and discouraging. I fear that the good scan results (tumor shrinkage) from the last 10 difficult weeks of Irinotecan/Folfori treatments will be reversed with just these 2 weeks off chemo.

G'day mate

Today has been a really good day. While having an extra week off chemo isn't ideal, it has given my body a chance to recover. My energy level has been up (a little bit) and the nausea/vomiting/etc side effects from chemo have subsided more than usual.

This morning Hector and I went out for a run/walk before it got too hot. There was nothing speedy about this run/walk combination (2.25 miles in 40 minutes) but considering that it's been two months since I've tried to run at all, I'll take it.

Then we got a chance to meet friends for lunch at a new location of one of our favorite restaurants. Thank you Mission Taco for having us, we loved our tacos, burritos, margaritas, chips, salsa, service, the atmosphere, the wall mural... we loved it. Welcome to Saint Charles.

And of course it's not really a complete day for us without some kind of soccer. We have season tickets for Saint Louis FC and haven't made a lot of games, but tonight was the perfect night to be able to attend. The supporters group for the team did a fundraiser for the Colon Cancer Alliance tonight. (Hello, meant to be!) And not only that, but we got raffle tickets when we made a donation and won a team flag signed by the entire team, a perfect addition to our soccer-cave in the basement. And then the team, which has been struggling, beat the number one team in our conference 1-0. Wow.

I might have fallen asleep on the way home, but what a good day. The hard days might outnumber the good days right now, but today was a good and powerful day for my mind, body and soul.

best laid plans

• Bloodwork, appointment with Dr. T NP A and treatment Neupogen injection at Siteman South County

Today didn't go as planned. My absolute neutrophil count (ANC) was too low for treatment. Different medical definitions provide different numbers for what is normal, but here is what I have learned when it comes to absolute neutrophil count numbers and me.

> 1.5 is normal for most people
> 1.0 is normal for me and high enough for me to get treatment
< 1.0 is safe but too low for me to get treatment
< 0.5 is not considered safe and activities are restricted to avoid an infection

The only time that mine has been less than 0.5 was when I had chicken pox and they put me in the hospital. Today my ANC was 0.5. That's not great news, but as I was looking around on-line to try and define a normal ANC, I found the below article... and I quote "because neutrophils are short-lived, the body produces about 100 billion of these cells everyday." 100 billion. Everyday. So I think I'm going to cut my bone marrow a little slack and take this extra week off chemo to recover... and to make 700 billion more neutrophils. No big deal.

https://www.cancercare.org/publications/216-neutropenia_and_infections_what_you_need_to_know

30 hours in Chicago

I'm so glad that we were able to travel to Chicago this weekend. We had an amazing Saturday evening out on Lake Michigan celebrating our friends' anniversary. (I was super worried my new wig might fly off in the windy city. It didn't.) And after a walk around Millennium Park this morning, we spent today with my brother having a yummy brunch outside, spending some more time on a boat and eating ice cream in a friend's backyard. Couldn't have been a nicer weekend.

 

Fill 'er up

• Neupogen injection and IV fluids at Siteman West County

This blog is feeling a little clunky. I've been trying to record all of my cancer related appointments here, to demonstrate just how much stuff there is to do to make it through all of this, but for me that has it feeling more like an appointment log rather than a journal. (That sentence is pretty clunky.) Having a space to clear my head by rounding up the words in my head and putting them on paper (so to speak) is really why I started blogging in the first place. So I'm going to try and get back to that, perhaps losing the chronicling of every single appointment, but hopefully gaining something else.

With all of that being said, today was my third (and last) Neupogen injection for the week and I also received some IV fluids to treat dehydration. It's hard to get enough water down when I'm feeling nauseous and I'm actually surprised that this is the first time so far on this new chemo that they've suggested IV fluids.