Thursday, November 5, 2020

4 Down. 8 to go.

33% done. 

I thought I’d give a rundown on what one round of chemo looks like. It’s long :) 

The day before chemo I get my labs drawn  to make sure all of my counts are looking good. So far so good for me, but it’s expected to see drops and with some of them there is nothing you can really do about it other than bring down the amount of chemo you get or postpone a round (Platelets). And with some there are things you can do (RBC’s and WBC’s) like getting blood, plasma etc. Yeah- giving blood matters so keep donating if you can!
If the numbers are good then chemo day is a go!

My Mom picks me up and takes me and drops me off at the infusion center at RRMC. Unfortunately the new cancer center isn’t finished being built and the Hematology Oncology Clinic doesn’t do chemo infusion anymore. What that means is it feels like they used random available space on two different floors and shoved things in spaces and corners to make do.... and it’s not awesome. 
I enter on the ground floor, ride to the first floor to get checked in (temp check and hospital bracelet) and then wait until they tell me to head up to the 3rd floor down a weird hallway and around the cardio unit and into a corner room. 
Here I get my BP, oxygen, pulse, temp and weight checked. Then I’m taken to a big blue chair (sometimes with a view and sometimes not) and given a pillow and a warm blanket.
Next I wait to get hooked up. I meet my nurse for the day (never the same one) and she puts on a bazillion layers of protection and removes the plastic covered port where I put numbing cream on 90 min prior. She then stabs a needle into my chest through my port and connects me to my IV. First I get a whole bag of hydration. This was added after my first round because staying hydrated when you can’t drink room temp or cold drinks for several days is hard. This takes anywhere from 60-90 min. 
Then they give me an anti-nausea IV med followed by IV Benadryl which is nothing like the   Benadryl you would take at home. This stuff is strong. Immediately your eyes get heavy. Next they start two chemo drugs simultaneously. After those are done (2 hours) I get another chemo drug followed by the last one as a bolous of the drug I get sent home with. After that one is done they hook up my pump which is like a clear round ball that is attached to tubing where it’s taped onto my stomach where it senses my body heat and will release the drug based off of that. The tubing runs up my stomach and chest and is inserted into my port. That’s then taped in several places, and my port is covered in plastic and taped up. 
I’m there from 4-6 hours depending on what else is happening with other patients.

What do I do while I’m there? Well work and reading is hard because how tired your eyes are from the drugs. Most people sleep and snack.  I sleep, snack and play around on my phone. I’ve done some coloring and audio books. They have snacks and drinks but also a fridge to bring your own food. Also I go to the bathroom a lot. There’s a lot of liquids going into my body!

I can’t shower or get wet while I have the pump in. It really doesn’t bother me, I wear it in a “cute” fanny pack on my side so sleeping isn’t difficult. It’s just part of me for 46 hours. So chemo day lasts 3 days but only one of those days do I have to sit in a chair at the hospital thanks to the pump which I’ve named after the supervillain Poison Ivy from Batman. 

Chemo day is exhausting. My Mom picks me up and drives me home. We usually stop at Outsider Coffee for a warm drink to celebrate being done. She’s a great designated driver! I come home with a Benadryl hangover and just totally thrashed from all the drugs pumped into me. But because of the steroids I’m given, sleep is hard to come by so I come home and rest in bed but rarely fall asleep. Sleep at night is hard. 
The next two days (Wednesday and Thursday) are decent and I get the pump removed on Thursday, the time depends on when I got it connected. Trevor and the boys take me back to RRMC where I go through the same exact routine as I do on Tuesday only they remove the pump this time! When they take all that tape off... ahhhh. That’s the best feeling. This only takes like 20 min. During that time Trev takes the boys for a special drink (it’s hard specifically on two of them to take me to the hospital- my extended stay there in May was traumatizing for them too) and then they come back and get me and take me for a special drink! We try to celebrate everything we can! 
Side Effects:Cold Aversion: During the third bag of drugs I get one that causes a weird reaction with cold. It hits pretty much immediately which means no more drinking anything but warm liquids and warm water for my hands and no more touching cold things (think anything from fridge or freezer). It’s super weird and sometimes I forget with the touch part, which feels like an electric shock that lasts until you warm your hands back up. But drinking I don’t forget - because it feels like swallowing glass shards and is super painful. This lasts for several days, usually I’m able to eat/drink sooner than I am able to touch cold things. As the temps drop outside I could experience other things as well so will just keep an eye on that!
Neuropathy: This is something they fully expect me to deal with in both my hands and feet. So far I’ve only had some numbness in the tips of my fingers for a short amount of time in the first day or two after infusion. Really praying this side effect stays away because there’s the potential of it to get bad and last a long time (in some cases it doesn’t go away)
Nausea/GI Issues: They have come a LONG way with medication to help this not be so intense. I take a special anti-nausea steroid for the three days following infusion. Saturday/Sunday is usually when these symptoms hit and I start with the med that doesn’t cause sleepiness but often have to step up to the next level or two levels which both make me extremely tired and I sleep all day. But it works on the nausea and other GI issues. This stuff on top of just plain tiredness last until about Tuesday/Wednesday. Thursday there is usually a night and day difference and I get my energy back and end up having a great break until I go back on Tuesday for another round. 
Shaky Hands: This is pretty pronounced on some days and not so much on others. Often it’s obvious when I’m holding an eating utensil or trying to take a picture :( I have a lot of blurry photos these days which is hard for a photographer:/ 
I do feel fortunate to be escaping some of the other major side effects so far. The longer you’re in treatment the harder it gets and the more your body struggles so I don’t anticipate I skate through this without setbacks but I am hopeful it won’t be the full gamet. 
Because I’m not losing my hair and I wear makeup ;) I don’t look “sick”. It’s a weird feeling to be feeling sick, fighting cancer and going through chemo without that being obvious. It’s just a weird place. Hard to explain. My husband, kids and parents see it because they see me at home in my worst shape. I have been advised to avoid meetings in small rooms even with masks. I’ve been advised to not be in a space where food/drink is being served, because masks are off. I avoid most stores, but have had the chance to go into a few places just to browse and get out of my house. We do Instacart for most of our groceries and if we need something else Trevor or my parents help. We don’t have anyone in our home other than us and my parents who have sacrificed and given up a lot to make me and our family their priority so they can be around us and the kids. We have three sets of kids we’ve allowed the boys to be around masked and Jack goes to Preteen Group at church masked- he needs this for his mental health. Trev works from home a lot but when he’s at work he’s masked and distanced and when he comes home he immediately showers and changes his clothes. I’m working from home except for a small meeting in a large room and leading Preteen Group on my good Sunday’s. We are just trying to do the best we can with this Covid/Cancer scenario. 
Most of the time I’m doing well emotionally these days. I have breakdowns. My kids have breakdowns. My husband has breakdowns. We are doing our best and without the most incredible support system that surrounds us - I don’t know how we’d do this. Between our church family, our co-workers, our friends and our family and people we don’t even know we are being prayed for, fed and supported financially in helping with expenses not covered by insurance. 
It’s humbling to say the least. In the middle of a global health crisis, tension within our country and so many other difficult things for so many, we have this beautiful supportive community that we will forever be grateful for. 
So there’s a really long post about what life looks like right now. Ask me any questions! I’d be happy to answer them. 

My designated driver brought me a friend!!!
Straight Outta Chemo and home to snuggle the softest thing ever “The Child”

Ways we make chemo week better around here:


  1. Well this is exhausting. And heartbreaking. I love you, and I'm so inspired by you. ❤️