Friday, October 12, 2018

Oct 5-8. The Pause of Men.

Over the past few days, I've had profound thoughts that get sidelined by normal stuff.

And well my memory is crap so you will not get to benefit from any of them because I quite frankly don't remember. brain tumor side effect, chemo side effect, menopause side effect- who knows.

After my first chemo stopped working- we attacked the cancer another route. I tried Aromatase Inhibitors(AI) which are actually pretty effective for metastasis. My joints ached, the anxiety was bad, insomnia, mini hot flashes. Menopause stuff. That's the point- zap all the hormones and conversion to hormones that feed the cancer. Those hormones have some positive balancing effects as well- bone density, joints and such(hence the aches), concentration, depression, temperature control... A lot of the same effects from chemo so I thought- eh it would be ok. Until it wasn't. So I stopped.

With new bone activity- it's back to the AI. Funny enough, my hip/spine pain went waaay down- but my knees feel like I was a linebacker back in college. That was one of the factors that helped- the knees hurt- but no where near what the back was, so for now that a QOL improvement. I rarely get to sleep until after 3, spend most of the day in a fatigue fog, and well I'm always hot. Not in the good way. Let's not discuss the mood swings. It's not great for interpersonal relationships. Yet I am here and kicking and find things to laugh at and traditions to keep, like putting up Halloween decorations with Bella after she came with me to physical therapy.

Then to keep things fun and interesting- Phil and I had an at home date nite. Because YOLO and we are overdue and the kids were all busy. I also wanted to have a glass of wine- or 3 and give pause to a momma friend whose son Brent's birthday was the 7th. Phil did not appreciate my completion of promised Menage a Trois.


Friday, October 5, 2018

Oct. 3-4. Family Matters

Wednesdays. Pinktober.  I've never been a pink fan. To each their own. Pink ribbons and pink marketing,  I think honestly the sports pinking bothered me the most. Instead of rage, I funnel that energy into other things.

Yet this Wednesday was Mean Girls Wednesday. The soundtrack from the Broadway Production plays over and over in the girls' rooms. Suddenly worlds collide. Snark and awareness. Snarkness? Awark? kinda like woke but with more snark.

Girls are mean. Middle school and high school are tough. Thinking it matters what people think- finding you stand alone when it really counts and then if you are lucky- finding your tribe.

At the high school here, they instituted business Wednesdays. The kids can skip wearing the uniform shirt, but have to wear at least business casual. Kiera and her friends- wear business pink. It's fetch.

Thursday. Back to PT. It's good. I'm sore, but the PT helps. I run to walmart. yeah that's right, respect. 2 outings- one day- woop woop.

Between errands- woop woop- I check messages.  Lily's called, a message- Something about Bella a fight at school and oh dear. Teens. This really only affects what I buy for Bella at Walmart. and my entire weekend.

By the time I'm done at walmart- bella is calling declaring she is sorry and will comply with whatever list of chores I decide. I decide we will continue this discussion at home.

And that occupies my/our Thursday night. CSI Ewa Beach- piecing together the drama- like sands through the hour glass- so are the days of middle school. So no we aren't perfect, we are real and we spend a lot of our energy making the world a better place, one
mallory at a time.


Wednesday, October 3, 2018

October 2- Therapy


There are many types of therapy. Emotional, spiritual, physical, psychological, chemotherapy, radiation therapy, . Therapy can help you go on when everything else seems broken. Therapy is a part of life- and you can call it whatever you want- living, recharging, coping. But when you need help, its important to get help.

After my dad died, I went to therapy for awhile. I didn't feel I needed it. It helped. a lot.

After I got married, Phil worked long hours. With 2 kids at home-I struggled with my new identity. As most moms do after the warm fuzzy of new mom wears off. My therapy became schedule. Fixing up the house, making a home. Being momalicious. Immersing in the fighter wife culture.

We moved to Hawaii, had a few more kids, way more debt and then the cancering hit. Inundated in saving Lily. Routine was our therapy. We went to some support group functions, yet although some of the needs were similar, each family has their own set. LFS put us on another plane. The kids met with a counselor while we were in clinic, which seemed to be all the time. The hospital hosted Oncology on canvas- a great art therapy opportunity.

Years of cancering does a lot of damage. Emotionally, spiritually, physically. The collateral damage can be great. The long term effects surprising yet expected, never fun. After Lily was finished with chemo, was a dark time for me. Those around you expect that "you won",  "you beat" the cancer. Everything is great. When in actuality- you survived. I just survived. I wondered when, how long we'd have before the next cancer would throw us back into the fray.

Medical quiet time was short. We were just getting a handle on Phillip's diabetes when I became lumpy. A chunk of arm and breast sacrificed to the Cancer Gods with hope that we could buy time. If it can't be medically quiet, we learned to settle for time. We embrace life, check off bucket list items, hug a little more.

The effects are cumulative. After awhile, your energy stores deplete, no matter how you try to replenish them. Others help get you to the next piece of calm.

We kinda chart our own course. I went right from surgeries to travelling back to life.  Before Cancer, I had been pretty healthy. You know- healthy enough for tumors to thrive. After, I stepped up physical activity and we ate even healthier. My cancer still metastasized. Chemo made me feel weak. My genetic counselor called because she went to a conference and found a great physical therapist near us. I could get acupuncture and they could help me feel stronger. Physical therapy became a valuable part of my routine. It got me out of the house, it kept me physical and overall helped me feel better.

Sometimes I dance with cancer. Sometimes I dance with insurance issues to get the therapies that help. Every person is different. Each therapy shows that. One size does not fit all. So what I've learned- find what works for you. If it's getting up every day and doing a full face of make up-taking walks- drawing-writing- do it. Do it to feel better, do it for you.



Tuesday, October 2, 2018

October 1 - the heart

Despite Kiera burning a pumpkin spice candle for the last month,  October still snuck up on me.

September’s focus was childhood cancer awareness for Living LFS. My favorite part of “the job” is support. I was overwhelmed by the response from parents willing to share their mini mutants. I messaged several throughout the month, exchanging stories, fears, hard times. We work really hard to stay upbeat. I started posting on my personal page about Lily’s cancers. I felt the love but also heard how hard it was. Yeah it was. So I stopped. She is my positive, every day. This month marks her 10th year as a survivor. That is huge. I also know how excruciating the month is for so many who have lost their babies. My heart broke a lot,.

We also celebrated my 19th year as a mom. I mean Phillip’s birthday. We had our traditional Cheesecake Factory dinner with his friends then they went out on a yacht to celebrate. We are still transitioning with the man-child to adult thing. Cancer has eternally screwed, I mean skewed my perspective.

October marks my 5th year with Mets. So appropriately, today was a chemo day. I have to say, I still dread it. The team is great. It really doesn’t hurt bad- I get a few pokes- I spend some time hooked to an IV, we go home. There is usually waiting. I’m not good with waiting.

My blood work stalled. When it came back, I knew my nurse was going to be disappointed in my potassium levels. I haven’t been taking the supplements. It’s a process, I can’t swallow them, yada yada. Minor thing. She doesn’t harp, she problem solves- would I be more likely to take a smaller pill. Yeah. I only take about 9 pills a day- smaller would increase likelihood of compliance.

My doc comes by and pets my feet. My left ankle is a little swollen- but I’m pretty sure that’s due to the new aromatase inhibitor-and my joints hurt and swell. Physical therapy is helping- my back pain has improved so much already I feel human again. How’s the lump?

So Yeah she isn’t petting me out of love she’s looking for this random lump comes and goes on the top of my foot- X-ray declares it a bony spur thing and also found 2 other issues with that foot. I should probably name it so I remember it. But it is currently  gone. So there. Doc is puzzled. Yeah yeah one lump at a time.

Well my ECHO was last week. They look at the ejection fraction- a measure of how much blood the left ventricle pumps out. Many medications weaken the heart. Drugs are bad mmmkay? Unless they are saving you, but they still can have some bad effects. Perpetual risk - benefit analysis. One of the reasons I did not do chemo initially was fear of doing damage. The heart bears a lot of the strain, on many levels. My EF was lower- not bad- just hey what’s up kinda thing. Well my last EF actually went up, different tech- yada yada. So the overall decline wasn’t really big. I’m still in fine zone. Need to be careful- you know- take supplements and shit so my heart doesn’t have to work harder than it already does.

We usually get home with an hour or two before the kids get back from school. I rest, Phil works out and runs to Costco for easy food for the week. He then grills dinner. I heart him so much.

There were several newbies in the chemo bay and really I just kept silently chanting “bless your heart”.  It was relatively quiet in the bay. One young mom has half her family there- fun grou-kept giving the dad shit. 2 older guys who slept very loudly. Lots of snoring. 2 other youngish ladies. I dread pinktober. You never know who is gonna show up looking like they’ve just taken a dip in Willy  wonka’s pepto river. None today. A lady on her second chemo, very chatty very peppy- would fit right in with the mutants was chasing Pokémon with young mom’s husband. Young mom is struggling with iv and chair- obviously needing to go to the bathroom. She casually defends herself- I have no idea why I’m peeing so much. Oh that’s easy I told her- you are on your second bag of fluids- you will spend all your time in the bathroom. That causes you to pee? Um yes, hydration causes you to pee. Bless her heart.

2nd chemo Pokémon lady is quiet. Ah the Benadryl is kicking in. She mentions how she didn’t think chemo would be as bad as it was last week. She lived in the bathroom. Wicked indigestion and nausea. Yeah, ya think? Bless her heart. So I sing the praises of B12 shots. She had no idea they help with indigestion. Well they don’t really- but the truckloads of meds you take for the indigestion inhibit the absorption of b12, so extra helped me feel better. At which point nurse extraordinaire shooes me out the door before she has to give everyone b12 shots...but there could be worse things. Bless her heart.

Lily Kay Monkey

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