Today starts another chemo week. I must admit, the night before is incredibly anxiety provoking . Starting around 8PM my mind goes into hyper drive. The pre chemo blood work on my very slippery veins sets the tone for the rest of the day.
The actually “hooking up” is similar to the Spacestation docking..An enormous amount of prep work by the lovely nurses at Dr. Nazha’s (my oncoligist) office. The skin is cleaned no less then 4 times and a freezing spray is used to soften the blow and then the lovely nurses pierce the skin with the needle into the center of the port to start the meds. All this is done by touch because the port is under the skin. I have a habit of pressing my nails into my palms to distract me because I read an article in the dentists office that said your brain can only comprehend pain at one spot at a time. I don’t know if this is actually true because it was in an Oprah magazine and everyone knows Oprah knows absolutely everything!
And so, here I am. Chatted with two friends, one on chemo and one not. We spent some time talking about our kiddos and very little time on ourselves. Typical moms are we..
I’ve finished 2 chemo sessions so far and I’m on my “RestWeek”..I don’t quite agree with that universal term describing the days following your infusions where your free to come and go as you please. The immediate days, 1 through 2 are not too bad. Nausea mostly but easily handled by one or 2 of the 11 bottles of pills and potions lined up. Day 3 the fatigue taps you on the head and says, ” Hey!!!! Remember me? There’s no going up and down stairs, making the bed or putting on makeup..nonononono I just wont have it.” Fatigue is a profound feeling like I’ve never experienced. The act of simply raising your arms is monumental at times. I never ran a marathon, actually I never ran period. My people don’t run, we walk rapidly with an occasionally stumble..But, If I did, it probably feels like going for a second marathon 5 minutes after completing your first. Day 5 through 7 of rest of said “rest week” I start to feel normal again..Day 8 is when your gut catches up with the fact that your trying to kill it and it doesn’t quite care for that. It reacts violently and without mercy regardless of how nice you were to it in the past with probiotics, vegan yogurt, $10 kale smoothies and lactose free milk..It’s mad and there’s no apologizing to it. It hums the theme song to GilligansIsland if you try…
This was the week I also lost my beloved grey silver and black curls that took a year and a half to culture. The loss wasn’t gradual by any means. One shower=no hair left..OK, I knew it was coming but to have it in your hands really sucks..Lucky for me, Dr. Schmoopy to the rescue!..His nimble pre-surgical head shaving hands made quick work of it for me, himself and Isaac..If we sit together we look like a nest of Peregrine Falcon Chicks…A good friend of mine is also having her own journey with chemo and realized today her beautiful curls, admired by many are on the outs…We just looked at each other with not too much to say…
Second position is known as ‘ The Jumping Jack That Never Jumped Back” It provides a wider base for pliés and also serves as a transition between steps. This position was always the easiest for me to do correctly. I spent many days perfecting my second position because it gives your legs some breathing room, so prized by the woman of my HaploGroup H11 1b…. This position is similar to my “rest week”. It gives me breathing room to tackle the beast waiting for me next Monday.
The end of my “rest week” is coming to a close this Mothers Day. The happy feelings of seeing your children successfully navigate into adulthood are mingling with dark feelings of dread. Hoping against hope you will see your husband retire and realize his dream to bake 24/7, weddings, partnerships, grandchildren G-D willing. These are no longer guaranteed to me but are now relegated to possibly, maybe or hopefully. They are random thoughts in my head day and night. These thoughts prevent me from continuing my online shopping addiction or buying new real estate to play with.
I had a set back with an infection at the port site..Having a compromised immune system makes me susceptible to any and all germs. Since a port is a piece of hardware, if it becomes infected, it must be removed. It cannot be treated. Fortunately, my friendly neighborhood ID doc hooked me up (literally) with new antibiotic, (Dalbavancin) ..Add a few days of oral Cipro and hopefully it was kicked in the butt and chemo can go on as planned tomorrow.
The last 2 days were the days I have felt the best. This makes sense because they are the farthest from the infusion days..I was really hungry, had no nausea and very little pain to speak of..If this trend continues, it will make planning anything easier knowing I have 2 or 3 good days to look forward to. The lovely Mary came home to visit with her usual bag of gifts and goodies. Today she took me to my happy place….Langs Garden Center..The mother of all boutique garden stores…$200 later and I’m a happy camper.. So as my anxiety about tomorrow grows and intensifies throughout the day, I go outside and look at my chaotic but very happy mess of a blooming garden. I offered up some very pretty purple Clematis to hopefully satisfy:
“The Hopping Bastard Bunnies”
In hopes they will leave everything else alone…..
The positions of the feet in ballet is an important part of classical ballet. It defines the placement of feet on the floor. I’m ready for first position. My feet are firmly grounded on the well worn wooden floor at Miss Elayne’s Ballet Tap and Jazz School on Union Turnpike in Queens..I am determined to hold onto this position. To accept whatever is necessary to get me to the next position gracefully..
I’ve completed my first round of chemo. To be exact, I’m enjoying a “cocktail” called FOLFIRINOX. Unfortunately it isn’t served in a rocks glass at The Knife and Fork in AC. This concoction consists of leucovorin calcium, also known as folonic acid (FOL), fluorouracil (F), irinotecan(IRIN),and oxaliplatin (OX). All of this is delivered via a port near my neck. This port will stay in for I’m not sure how long. I’m not loving this port thing. It hurts, it sticks out and it ruins all the years of hard work I’ve devoted on making my décolletage the best in my neighborhood .
The side effects have started pretty quickly, extreme nausea, fatigue and a complete and utter disgust of food, except mashed potatoes (Thank you Debbie)…Today I received a very handsome gentleman at my door offering me a bowl of mashed sweet potatoes (Thank you Martin).. Dr. Schmoopy has been hard at work in the kitchen reorganizing everything to look like his OR. Everything is straight up, labels out, nothing out of date, which never concerned me in the least!!! Those arbitrary dates were a construct by The Man to make us throw out food and buy more!!!!! My fridge is spotless with every inch used to its maximum potential. I can actually open it and see what we have and not have to guess or see if the dogs turn their nose up at it to test for yuckyness.
I have been doing a lot of reading, good and bad about this type of cancer. It is considered the most insidious because it sneaks up on you and kicks you in the gut just when everything is going so right! Similar to ovarian cancer, they are silent killers waiting to pounce on the unsuspecting. I could give you lots of info here, but I know you are all so adept at dialing up “The Google” as my dad calls it, you can read and research it for yourself. I’ll just give you whatever tidbits happen to remain in whatever brain cells I have running.
The part of dance class I hated the most was “warm -up”. It was a guarantee that my tights would POP while stretching our legs. Then I would have to go through the rest of the class with a bulge of pasty white never seen the sun never wears shorts doesn’t go to camp thigh….
Today was the second day of chemo. A much shorter visit which consisted of refilling my take home pump of 5fu and hit of heparin . I also had some decadron in the mix. I was in initially happy to be done so soon as all I wanted to do was go home and lay down, but then I panicked and started thinking a mistake was made and I didn’t get all my chemo!!!!! After asking a very patient and pretty nurse 3 times if I really was done, I picked up my blankie that Isaac gave me, my “supply of stuff” bag and my coffee and headed home. I did wait in the parking Lot a full 15 minutes just in case a mistake was made.
First night didn’t go as well as I had hoped for. Being tethered to a pump is complicated for a girl who failed geometry 3 times in High School only to receive a pity pass…
After figuring out how to undress and get redressed for bed, all the while Mr. Pumpy (Thank you Susie) and I sat and waited for…….”The mother of all shit storms”. I had been warned, given literature to read to cope with it but lo and behold!!!!!!!! Nada, zilch, nothing…….Next day still nothing…I mentioned it to the very patient and pretty nurse who looked wild eyed when I told her my predicament…More on this tomorrow… (if the CIA is monitoring my posts, your in for a wild ride).
Side effects so far: No appetite at all. Food looks gross. I do have a weird potato craving . When food or liquids first go in my mouth, there is intense burning. I have neuropathy in my hands making them super sensitive to cold objects, also a burning sensation if I lay my hands on the cold kitchen counter. Constant slight headache and fatigue. Tomorrow I go for a neulasta injection only…I won’t need my blue blankie or bag of tricks.
My Surgical Oncologist emailed me the impressions of the Radiology staff at University of Pennsylvania. I don’t want to open them thinking they say something a lot worse than I’m being told.
All of this is similar to putting on a freshly washed leotard that my mom didn’t bother to unknot for me before ballet class. At first I tried getting my legs (Ashkenazi thighs) into the arm openings. No dice…Ok, turn it around and put them in the right holes. Why is the neck stuck at my waist? Why are my tights slowly cutting off circulation? Is that hole in my tights where my arms go? Ok, I’ m ready to learn Swan Lake but I feel like a dodo in pink…who can’t poop..
Today is my first day of chemotherapy for pancreatic cancer of undetermined stage and grade. “Chemo” for those in the know. Writing that sentence makes me nauseous. I was diagnosed about 10 day ago with what I thought was low back pain. WRONG!!!!! The next few days became a blur of appointments and tests and biopsies. I gave more blood than I thought I had, I’ve had scans that warned me to stay away from children and pregnant women!!! WTF! I have slid in and out of tubes all the while freezing in those crazy cold rooms wearing only a gown. I’ve seen more specialists and have gotten more opinions than I can count. Last Friday I had a port put in . I should have opted for the light sedation and skipped the Valium. It hurt like a MoFu…What it boils down to is me sitting in a big round room (also cold) with people much older than I am all connected to a needle delivering toxic concoctions: Irinotecan,Leucovorin,Eloxatin,Fluorouracil,Neulasta and Procrit all in the hopes of living a bit longer. I should be a pro at this since I’m an 8 year breast cancer survivor as well.That was a cake walk in comparison. I’m looking at it like a dance class from 3rd. grade. Everyone else seems to know the steps, what to bring, what to expect. I’m the odd man out. I don’t have the right dance clothes and I’m a klutz.