Life Hits the Brakes, then Flies Right Past You.

Before the holidays, I got the news that my friend Linda passed to the great fairy dance in the heavens. She was one of my early LFS friends, she often cheered me up with unexpected gifts and words of wisdom. Many times they were not words I wanted to hear, but needed to. And that's why we were friends. At about this point in my very first try with chemo, we did Jen's Island tour in a day, modified for her likes. She mentioned my cough was so much better and she was hopeful for me. In 2018, I got to sit and chat with her in her gorgeous home and she confided she didn't have long. It was my turn to tell her something she didn't want to hear, I could tell she felt awful- but she had more time than she thought. She was too damn stubborn to go yet. And she was. I have a message from her that sits in my voicemail a couple weeks before she died. I wanted to call her back but didn't want to say goodbye. I was in the middle of shit and couldn't feign positive and I knew she needed every glimmer of hope then. Due to my schedule and condition, it's not safe for me to fly, I knew there would be no way to attend her celebration of life.

A week ago, we got the news that one of Phil's Academy classmates and fellow pilot suddenly passed away. I only knew Fangs from reputation and stories, knew he was very highly regarded in our community and that he left behind a wife and 2 children.  I did not have the honor of getting to know them, but know many of my very respected friends are friends in common. My heart broke. He didn't choose to go. For his family and friends, that will forever be a moment that life changed. His death weighs heavily on Phil, because he has my gollum of a meme in his face daily reminding him how soon that moment could be his.

He was distracted. Sad. I knew he needed to go to Fangs' memorial. He  didn't want to leave me. Life Triage. In true Mallory luck, Phil would leave the day before my SIL did. I'd go from reinforcements to my first solo on the new chemo routine, which none of us has down and skip a pleural draining. The memorial was in Colorado Springs, another reason to go. Then I told him he needed to go. For him, for his friend, to be with his friends during this time,  to get away from this and to hug Kiera, for me.

Before Theresa got here- I started testing my boundaries without oxygen. One day I texted Phil that I excitedly made it UP the stairs, slowly and with 3 breaths per stair but made it without desatting.  I spend a little time outside for sun and do a few laps in the back yard. My pleural fluid is decreasing and McBreathey gave us the ok to drain every 3 days instead of every other. There is a lot less fluid and it's a more normalish pee yellow than the scary amber. My belly still swells creating some discomfort, but if I can keep the whole system doing ok, we are making progress. My goal at the end of this week is to take Dobby for a walk to the corner and attend one of my favorite lil friend's birthday party.

The day before my last chemo, I knew I was going to be feeling about as good as it would get for at least a week. I asked Theresa if she'd be down for grabbing a fancy coffee at Ko'olina and letting me do a light shopping mission for my nephews. She was showered and back downstairs in a flash. Faster than I could get up and down the stairs. As we backed out of the garage, she mentioned the van was not handling right and in true pilot fashion- insisted on a walk around that revealed a flat tire. Oh Life. These times I try to think of karma and balance and just hope that since I had reinforcements and help, in the grand scheme- we were saving universal murphian energy from plaguing at least another poor soul. Maybe in that moment something was going right in a hard time for someone. I also thank these moments when they fall towards, us. We have experienced many of both.

Theresa and Phillip replaced the tire with the spare, also flat, fortunately AAA was happy to help. I went and slept the rest of the day while my blessings were fixing the tire so we could get up at the crack of dawn to rinse and repeat.  Last week I was surprised by getting just about all the meds. I thought that would be the following week. The protocol screenshot in my phone, includes weeks not dates - that's the first problem there. So I expected just the chemo and new Avastin for this following trip and luckily still had Theresa there. I got the bonus of of 2 bags of packed red cells since all my counts were low. This leaves me vulnerable to infection(no flying petri dish tin cans for me- god forbid partaking in a little Corona-V with a side of Lyme). I had forgotton how long transfusions take. I am supremely grateful to all who have good blood and take the time to donate- it makes days like that infinitely easier when there is blood available. Murphy. Karma. Universe. Nod.

The new med Avastin does a couple fun things- it takes my voice for a few days and makes my nose bleed. Friday I alternated between shoving tissues up my nostrils and just leaning over the sink and letting it drip. Ironically the same rate as the drip drip of the infusion merely days before. Fuck. I called my nurse declaring I was NOT coming in, just needed the trick to slow it. Ice compresses. they work. I have a couple eye mask ones that work well. The biggest problem is that I can't breathe with the clots and blow my nose, or it knocks loose the clot and the process starts over. I also learned when I finally got the bleeding to stop- that the runny nose from the monoclonal antibodies also flushes out the clots in a fun process. Also fun is the neuropathy, shakes, exhaustion and chemo incontinence with Abraxane. SO despite not having female plumbing- I still have a full complement of female products to address multiple orifaces' leakage. The best is when I can order online and make the 20 year old man- child pick up everything from sensitive skin cleansers, lotions(my skin hurts) incontinence pads, to super small(nostril fitting tampons) with the hemorrhoidal wipes to try and prevent chemo baboon butt.

This week is an "off week". No chemo. Just my ECHO to check on my heart. It's working, a little overtime. My heart rate is climbing and I needed an iv contrast to help them get better images. Phil got in at 11pm last night and we drove quietly to Tripler at 6am. We were both dragging. He hasn't decompressed from his trip, I haven't recovered from my solo(3- flipping days- I remember when I could get an entire room redone in that time. ) I slept though most of the Echo. and apparently kept moving back and the darn pleural drain dressing is right over the sweet spot for a key image but she was great and gently got it.

Kiera texted yesterday that Kobe died. Then to find out it was a helicopter crash- there were multiple deaths, parents and children. Families whose entire universe crashed down in that moment. Of course most will mourn Kobe- he was very well known and loved. It is tragic. I mourn all, the children, the families, lost and left behind to make sense of life as it will continue to fly by them in the format of awards show, sports games, everything. It is easy to mourn when loss is always so fresh. It is cumulative. Each one harder than the next. Memorials help fill the cracks of our hearts. Surrounding us with those who have many cracks of their own.

Phil finally will barely broach the subject of what I want as a memorial. It's a very difficult for him, I hate that he is gathering memorials of experience for reference. After all, when the mutants were here - they sat with pen and pad- asking the tough questions. I wasn't ready then- although the subject has morphed in my mind multiple times over the years. We laughed as we discussed songs, perhaps irreverant ones that could accidentally play and either shock or envelope in laughter.

For the record- I want no one to go to great expense or hardship. PERIOD. Perhaps favors will be all the feminine products and gumball machines of crazy meds I've acquired. Honor me through my family. Through acts of happiness and giving. Share love, hugs, stories and thoughts regularly. To my dedicated ones- text them as often as you text me. They won't always respond either, but it matters. Adopt A LFS Family, they always need help but won't ask. Make the world better. That's all. For now I'm thinking of snarky ways to torture those who do show up for a celebration of life(Trish- shall I pre-order tshirts now- I think it's a bit soon).....I have a fair amount of time to do this so it should be good. Mills- your services will be needed. Payment will be in shave ice and garlic shrimp and you will be first weapon of torture. DeAnn will rein it all in to keep it "respectable".  The good thing about stopping and looking around are the moments that Don't pass me by.

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.