Thursday, January 9, 2020

A Force to be Reckoned With- A New Cycle

Like almost everyone else on earth and possibly lands far, far away, We love Baby Yoda. What started as a free Disney + trial, became a family obsession. It began with the girls actually watching the Mandalorian, waiting not so patiently Thursday until 8pm, hoping the time difference would work to our advantage and Friday's episode would pop up, offering sagey cuteness to the soundtrack of Mallory awwwwws.


Phil's birthday generally gets lost in the bustle, immediately following Thanksgiving. He also uses my Amazon account- so surprise gifts are not really practical, especially when my medical condition is less than optimal. I usually use the force of persuasion to get him to take the kids or the guys to a football game.

After months of him griping about a need for a power washer, I caught a flash sale on amazon. It was this bright green power washer- and I checked- this is a gift- hoping it would mayyyybe be delivered in a box that did not display bright green power washer- no such luck. So when Phil answers the door- the UPS guy hands him the box o brightly green power washing capability, I shrug and grin- Happy Birthday?

A few days later, he and the kids head to a football game. It's the last day of November. By the time they get home- it will be his birthday. I glance at the hideous green power washer and it hits me. Not literally, it wasn't plugged in. Baby Yoda. I grab 3 pieces of green paper and Dobby's blanket off the couch- I've always been a fan of creative wrapping.

December, a barrage of holiday readiness, appointments and baby yoda memes, tik toks and whatnot. Phil, he who was opposed to our acquisition of small furry beast, now has a partner to grill with. Yoda was on our original list of names for Dobby. But Jedi he is not. House elf he is. Size matters not.
House elf and the child.
Keeping busy helped through the rough spots of my first cycle. We slowly are finding our way back into an old routine with new tweaks. It's not familiar enough yet for me to predict, but enough to recognize and remember. There are days I want to lay curled up in a ball and sleep it away and the days where I am pretty positive I can do this. Memory is a tool, I use energy to collect supplies for comfort and prepping to make the rough bits easier become a routine.
days like this some are

 I find a backpack for Vader- my oxygen consumption is down so his battery lasts longer. It means I am unleashed.  I shake off some of the anxiety and announce that I am the next Mandalorian. The kids scoff my proclamation. I hope they never know the relief this small backpack affords me.
backpack, baby yoda, 3D baby Yoda

Lily traces  Mandalorian and spends an entire day expertly shading it. They are right. Mandalorian I am not. Armor I am missing. My guard is down. I am working on that. It's time to flip the narrative, I've felt like there was a bounty out on me- but now I'm putting that back on the cancer.
Bounty Hunter

My new protocol approaches the cancers from multiple angles. Just as the lil bastard cells multiplied, so must our response. Initially, I spent a lot of effort reducing collateral damage, and while that is still important- there is some slashing and burning that needs to be done. That bomb is abraxane. It goes in and stops cells from dividing. Since cancer cells are like weeds, the idea is that the chemo will kill off the cancer cells faster than it kills off the good cells and the good cells' host. 
Tiny expensive bag o cell killin abraxane.

We also are adding a new med call Avastin. Avastin is a monoclonal antibody and is a targeted therapy. When we get sick, our body makes antibodies to mark and get rid of the bad cells, monoclonal antibodies use this premise. There are many different monoclonal antibodies, just like there are many different antibodies for colds and viruses. Cancer cells like a big juicy blood supply and develop a lot of blood vessels- Avastin is one therapy that inhibits the growth of vessels, hence taking away the life source before it takes away mine. As you can imagine, by nature of how these treatment work, there are side effects. The abraxane side effects I am familiar with. Hair loss, GI issues, neuropathy, feeling cold(in hawaii, allllll the time) shakiness, general malaise. When you put meds together, they sometimes help each other work better. I've learned for me, side effects are an indicator that the treatment is working. If that is true, treatment is ah wurkin.
funny how an antibody is less anti-body and more targeted...Avastin.

It's just these two meds this week. Next week will be another combo. By the time I get home from infusions, I'm physically and emotionally drained. I feel bone tired. I look pretty pekid as my mom says. We were late to clinic because I was up in the middle of the night with aches- rain...so Phil let me sleep until 8:30 but our timeline of trying to get back by 2:30 to get Lil to her orthodontist appointment was already blown. Little things like that add to the stress and I am always grateful when I can text a friend for help and get a - we'll make sure she's taken care of. I know it's not convenient. It is absolutely appreciated.  Plus I hang in clinic just a little longer to get a full bag of hydration since I struggled last cycle feeling dehydrated. Phil runs around Tripler collecting prescriptions, hearing aid batteries or any other tasks that add up. 

SO the weather forecast did not call for rain until Friday.  Local peeps, keep your umbrellas handy before then- the bones have spoken. My Gi tract feels like a Sarlacc having a seizure.
chomp chomp chomp

My breathing overall is better. I can sit for time without oxygen, giving my nose a much needed rest. Whether the nosebleeds are from the airflow or chemo or a combination- the rest helps. My neuropathy in my hands is not great. It seems kinda cruel that you can be numb and feel pain at the same time, but my arms are good and my kids fill them with hugs. My hair started clumping out after a couple weeks. The follicles get inflamed and so hair movement hurt- which meant shaving it was for comfort.  So far my voice hasn't done the wonky thing. Phil changes my dressing and drains my pleural fluid every other day- we've spent the better part of the past month trying to figure out rashes and  reactions. I have a full collection of tapes and wraps and the one that I swore wouldn't work has worked like a champ for the past 2 changes. I think my skin will get wonky again through the cycle, we will keep on top of it. 

I don't go out much. Phil takes me for drives to look at the ocean- I open windows or sit out back for fresh air, because it seems like everyone is coughing and hacking.  I'm looking at it as a short term isolation to help my lungs heal. Now the kids are back at school, germs will come home. We just do the best we can. Like everyone else. I am not a force to be reckoned with, I'm just a person trying to find my next piece of armor. Perhaps it will be made of gold. 



No comments:

Post a Comment

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)