Not Ok. Waiting for Rebirth of OK.
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
On the scale of fine to not ok. NOT OK.  Not REMOTELY OK. I KNOW NO ONE IS OK right now.  It doesn't help to compare, compete, or criticize in this stage of the quarantine. or cancering. or living. Medical long story short: Still getting some sort of treatment every Wednesday. Joint pain getting worse, shortness of breath, GI issues, mouth sore still hasn't healed. My onc retired and we are breaking in a new onc- who so far has gotten the memo on the complicated high maintenance patient I am. We've dose reduced abraxane and avastin again, I have appointments with rheumatology, GI, o ..read more
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Cancer in the time of Covid-19
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
Do you think Corona Beer Co- after all publicity is good publicity found the line of - yeah except THIS publicity....dang now that's OVER the line. Although sales did go down- I think mutant purchase of Corona went up mega fold- cuz that's how we roll. Have you washed your hands lately? How it feels. This article inspired me to update: Why people with cancer are my guides during a global pandemic. KEEP PERSPECTIVE-EVEN IF IT IS DELERIOUSLY INAPPROPRIATE. MAYBE JUST KEEP IT TO YOURSELF.  I've lived with cancer in my body for over 8 years. I've lived with cancer, the clear and ..read more
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Mutiny Abound, Abscess Much?
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
 When you send your mutant sistahs a picture of swelling due to unknown origin- you know you will get a response. That response will be get yer arse to the ER ya stubborn git. I will pull the compromised immune system card, which unfortunately can be used to argue either side. The "chipcheek". You will be stubborn and point out all the reasons that you should NOT go to the ER- infection, viruses, jokes about a corona with a side of lyme disease. Then they will mutiny and call in the closest mutant visiting to physically take over. Especially since closest mutant is here on vacation and sto ..read more
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Life Hits the Brakes, then Flies Right Past You.
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
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 tur ..read more
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A Force to be Reckoned With- A New Cycle
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
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 medic ..read more
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Losing My Voice
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
Phil constantly asked if I tested how far the oxygen tubing would go. I didn't. He's an adventurer(hence his gamble on me) and I play it safe. I research, then think, then ponder, rationalize, then research then maybe decide or wait for a sign. I was so happy to have the oxygen, my life raft with a tether. Yep- that's a summary of something- surrounded by a world of oxygen and need the stuff in a tube. I'm fancy like that. I would get the tube of vader caught everywhere, hated taking him in the bathroom, would wipe down tube, double check my pulse ox and his battery obsessively. I was afraid ..read more
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Thankfully Burdened and Drained.
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
Thankful.  We had a quiet yet very tasty Thanksgiving at home. Phil prepped and cooked everything. It was amazing and so good. I still felt a bit exhausted from appointments the days before. We are kinda in the revolving door phase of appointments- often going in for one, being sent to another and never knowing what fun might be in store. The drain placement was very much planned and I have to admit- I was really really anxious. It was necessary, since we were revolving into pulmonology too often to help my breathing via way of large needle poked into pleural cavity(the spot between lungs and ..read more
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Effusions in Plural
Lily-kayda's Family and Their Tales of Terrorizing Tumors
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4y ago
ef·fu·sion /əˈfyo͞oZHən/ Learn to pronounce noun an instance of giving off something such as a liquid, light, or smell. "a massive effusion of poisonous gas"   Similar: outflow, outpouring, flowing, rush, flood, deluge, torrent, welling MEDICINE an escape of fluid into a body cavity. an act of talking or writing in an unrestrained or heartfelt way. "literary effusions" Similar:  outburst, outpouring, gush LFS. Family. Camp. This was years in the making. An idea. A wish. A dream.  2019. Trish said. This is it. We are gonna do family camp.  6 board members beca ..read more
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Life, Balance, Onward.
Lily-kayda's Family and Their Tales of Terrorizing Tumors
by
4y ago
Every few days- I think- I should update the blog. Then life swirls in and we are swooshed past, around, under, over and away from the update I was about to give. 1 step forward, 1.5 steps back- encroaching on previous gains. So much happened over the summer, some HUGE Mallory milestones. Summers are historically busy for Phil, so we usually take on Home Improvement Mallory Edition. This year was no different. As Kiera geared up to fly the coop, these exercises are lessons and memories wrapped in a bundle. They also give me faith that she has the tools to tackle the obstacles which will inevi ..read more
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