sweet 16 in suite 16 + auto immune response

l.OgSEGhhWBVvWxNxFyesterday was a big 11-hour day at the hospital, with the icing on the cake being ~4 hours of chemo infusion in a private suite, or suite 16 for my sweet 16, as i count down my 16 chemo treatments. fabulous 15 up next week. we’ll see how long this naming convention lasts, especially if i starting experiencing nasty side effects that balance out the ledger (negative nancy 9 anyone?).

but right now, i feel great! i woke up sore from the port but so far, no major aches to report of. this can be expected as the pre-med steroids i took help mask everything else in my body for 1-2 days. i was told i’ll feel good enough to reorganize my drawers and scrub the floors today. maybe next time i’ll actually want to do those things. but for now, with the port, i’m not to even lift the kitten for a week. the nurses anticipated that tomorrow and sunday, i might not want to get out of bed. luckily (yes, mike), we have every project runway from here to the dawn of time ready in the queue. and a snuggly kitten. and awesome leftovers from a friend who dropped by dinner last night. and a new freezer my parents have been filling with delicious food options for me (e.g., carrot ginger fennel soup) and mike (meat lovers di’giorno pizza).

seeing your messages, texts, and handwritten letters of support and that you were thinking of us the past few days have carried such deep meaning. i mean, so deep in the gut where it feels so strong i can cry if i think about it hard enough. i believe in healing energy and how it flows in a mindful way to its proper destination. i felt your warmth, like a good friend sharing a cup of tea by my side. i could see you all there smiling…and laughing big hearty laughs. i’m now counting you in as part of my immune system response. you step up. you fight. you protect. and you love. it’s like i had a few million extra white blood cells just chillin’ out at the ready. today’s picture is one from the heiltsuk first nation in bella bella, british columbia, sent by a dear friend and colleague. it’s a picture from the past, and i know where some of these kids are now in the present…doing amazing things with their lives. you all continue to inspire me in so many ways.

i was most nervous about getting the port, being sedated with the same anesthetics that caused so much discomfort before, getting my chest cut open, and then having this semi-permanent bump and permanent scar as a reminder of what i went through. while i was mildly sedated, i also had to be slightly awake and follow directions, like to turn my neck further to the side, take a deep breath and hold it, etc. when mike saw me off to surgery, i was a hot crying mess. the nurse pulled me together right away with her sing-songy voice and questions meant to distract. she’s a free diver in the pacific ocean and has a granddaughter who is also a taurus. we had much in common.

the nurses and techs made it more bearable, wearing iron aprons in catchy camouflage and leopard prints, since it’s surgery with an active x-ray guiding placement of the catheter through my neck vein and into one of my main arteries. the tube is attached to what i equate is a rubber disc, like you see on the bottom of a chair to prevent skidding. going forward, nurses stick that rubber disc just under my skin to get meds in the catheter. pretty serious mainlining. i got to watch on the x-ray machine where the port was being placed too, which was relatively surreal to see my ribs and a mouse-like creature atop them.

as i was laying there under the bright lights, with my left boob oh-so-comfortably taped as far down as it could go to my belly button, and otherwise bundled up like an ugly blue paper burrito, i had to pass the discomfort by focusing on other things. after thinking about all of you, i switched gears and asked the surgeon possibly twenty million questions. somewhere deep pocket, i remembered that surgeons aren’t always those with the bedside manner of mother theresa (mo-t for short, one of my heroes). but in my relaxed state, i thought i could change all that and inquired to him on all manner of sorts (e.g., what’s your favorite surgery? have you ever had a cat run across your chest because that’s what this feels like? i was supposed to be in greenland today – what’s your next vacation location? tell me about how the sutures work? how many stitches will there be? do you know my friend michael at USCF? the answers i got were pretty straight up, “no” to all of the above. but he did his job and looks to have done it well.

because i had to fast before surgery, my parents and mike packed me good snacks (and fruit, tara!) to slam in post-op recovery. we moved on to meet with dr. rugo. everything is a green light. she was thrilled at the pet/ct results. when she left, she gave me gentle hug and told me she thinks i’m going to do great here. and today, i believe her. maybe by the end of this, she’ll start looking at mike and engaging with him more (and, he says, not walking right into him to get him to be the one to move), but i love that she focuses on me as the patient. she’s into chick power, and i dig it.

for chemo, i was lucky to get a private suite and full bed to relax in. the nurses are amazing, attentive, and explained everything that was happening. when they started a new med, they had to wait with me for 20 minutes or so to ensure i didn’t have anaphylactic shock or big tremors. i had 45 minutes of pre-meds for nausea, digestion, allergic reactions, and some pain from my port. then i started on herceptin for almost 2 hours, followed up by taxol for an hour. i was encouraged to sleep, eat, move around, and use the washroom. we learned chemo patients have to flush twice, so that those non-chemo visitors don’t get the effervescence of our chemo drugs. crazy. the infusion center is a funny mix of people doing all of the above, dragging around their IVs on wheels. some bald and beautiful and others with full heads of hair. some without company and others with an entourage. knitting, reading, snoozing, listening to music, texting. it fell like a weird airport lounge in that regard. only, people weren’t so mad. it was a pretty placid yet busy place. airport lounges could take some tips on chemo infusion centers, i think. but, i’ll figure out that one in my next life.

this week, i have appointments set up with an acupuncturist, nutritionist, yoga instructor, exercise specialist, scarf/wig specialist (the wig may be something optional for those times i don’t want to be identified as a cancer patient, like at the opera)(because we go the opera, like, every week)(or have never been once), and my haircutter who is picked out the ‘fiercest pixie cut the world will know’ for me. you’ll see a whole new me soon!

i can’t think of words that fairly describe what this life and journal experience is, sharing it with you all. it’s overwhelming, cathartic, fulfilling, and just plain good. you are all so special in life and special to us. you hit the nail on the head every day here. and for that, we are eternally grateful. we owe you one. and look forward to giving you support back when we are 100% again.

much love and until then,


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