some notes from a journal of words and photos I kept during a two week period with my sister Suzanne as she and her husband Fred navigated chemotherapy.
In Memory of Suzanne Zorbas Marquis
Today she called from her room "Ray, Ray, Ray" she wondered why he did not respond..."what's his name?" we all laugh... she fell asleep watching a show called "Everybody Loves Raymond" we are reaching for humor — so desperate for the relief of laughter-yet an afterthought of sadness lingers
Where does one find the inspiration to write about pain?
the process of pain
…how it sneaks up and grabs you by the throat when you least expect it
in forms that don’t always make sense or seem real.
The creeping, crawling that leads up to it –
Strangely a dance begins -a waltz of sorts…
Jump in full speed ahead, leap without a net
let the chips fall…
not how we want to function
we want solid assurance that today is going to be ok and tomorrow will be too and the passions we have for the things we do and the people and creatures that surround us will always be a part of that daily picture – everything “ok” picture.
I can function when everything is ok and I can function with great swings in the pendulum…I can drive this ship
what happens when you can’t-- when the forces that be are working full time against you- you have no say in the matter?
watching someone you love suffer. watching an animal you love fade away. watching a child make mistakes that will turn their lives upside down – as you stand helpless in the distance.
no matter what you put forth to “help” you cannot jump in their souls.
how do you watch from the backseat as someone anticipates another round of chemo?
for them the unknowns looming large - knowing only that poison is about to be injected into their body – a body that already is being invaded by an unknown, reeking havoc, causing complete shut down – how scared can “scared” feel?
everything you know is out the window...
another reality takes hold and the reality you thought you knew no longer exists
knock you on your ass leave no instructions
how do you have a conversation with someone who wants to give up – on life itself?
“the trenches “ your in the hole, insulating, isolating yourself from the world so that you can be this entity that exists to struggle together to find the solution – afraid to peek your head out for fear that someone might add a new dimension, throw a curve ball, or god forbid questions your choices… but you come up for air when you think the generals (doctors) are near because maybe they really do know what’s going on …turns out “no” no one knows – your just fodder
flying solo is just not an option - how do people do it - alone?
It's been a long weekend. And I think the three of us have pushed our individual limits pretty far. Of course no one more than Suzanne. Yet Fred is so tireless in wanting to just “fix” it make it better not wanting to see her suffer – and having to hear her wanting to give up – asking him to let her go…how can you hear those words from the one you depend on most in the world? He swings between super heroes to falling apart. I think he can’t imagine life with out her and doesn’t want to – I worry about him. Me - I just quietly do stuff and try to keep my emotions at bay – I guess I am numb it’s hard to comprehend on the heels of so much pain in my life. Sometimes I miss my ability to feel – it’s there -just buried. I need to always rise, be on, catch the falling – not that I am such a hero. I am scared most of the time anymore –wanting so desperately for something to just work for someone to be healthy, happy, content…. anything but this.
the barrage of MOM… “potassium, she could have a heart attach are they aware” – so and so” had a heart attack and died…” “when am I going to see you” “I haven’t been to their house in over a year” ‘tennis he’s playing tennis?” he is still playing after all this – I hope he didn’t leave her alone…” blah blah blah – me me me …mom I am not awake please …the silence makes her more fierce. defensive, lashing out when I say the least little thing…” mom she’s been sick” … was going to be a shield, a buffer from the charging forces of mom and moms need to feel good about mom at the expense of everyone around – in this case Suzanne. worn down I worry I will say something horrible to make it worse – there is no time for thought or perspective when talking with mom she is moving at such a pace – emotional response is the only way to shut her up…piss her off so she’ll feel “hurt” and then she’ll back off and go pout – problem is she then builds steam… thought: we should teach her to text…
“I am in a room filled with people hooked up to IV’s getting poison injected into their veins – they will all go home, puke, lose their hair, their dignity and many their lives…
I “see” only conspiracy of big business – peoples lives for profit. God this world is so fucked up”“can I get you a soda, how about some nausea meds in your IV"…it’s like being on an airplane to hell - oh and someone across from us has “the red one …that’s the big guns…” (mom)
“mostly a lack of focus…cancer’s a problem that can be killed by vaccine or immunization---it’s been approached on an accesorised level because it’s too much to solve the problem without an exacuteable profit on the other end” (Ty)
“ it’s remarkable the amount of drugs…I can’t count (15-20) that my sister has to take…separate from the chemo. No one is managing the interactions of the drugs and anytime anything goes wrong they throw another drug at her. It’s like drs. don’t know how to look at the root or cause as long as they can veil the problems with drugs. And u know they r puppets of the biggest most frightening drugs lords of all.” (mom)
“yeah…it’s tough though—a lot of the types of problems she’s dealing with – there is no true cure – and like anything it is ultimatley up to the body to make repairs…as a doctor you try to aid as much as you can and in a lot of cases that’s drugs…it’s a precarious balance tho-and the drug companies do tip it a lot” (Ty)
how’d u get so smart?” (mom)“
today Fred fell apart…it’s been building. he’s a fixer, used to solving problems and seeing results.he is tireless in his mission to figure out how to “fix” Suzanne but he realized today the gravity of the task he has at hand. he spent to day going through all her medications paperwork detailing “side effects” and “interactions”. adds some deletes some…it’s a crapshoot. why should he be the one figuring this out? how does anyone do this alone? (repeating theme)
Suzanne has this grumpy, sassy, complaining, questioning attitude coming forward…it’s FANTASTIC!
thursday: the Xanex battle continues…it seems to be the thing that is keeping Suzanne very lethargic (in combination with many other things that she is taking –which Fred is starting to re evaluate) and is not unlikely that Suzanne has been over using the Xanex for quite some time… the big question today – has this contributed to the situation she is currently experiencing?
on the heels of Jamie Oliver’s award at TED I approached this task from the perspective that I would shop local and where Suzanne and Fred shop. find things that would be healthy, easy to find and prepare. almost impossible task considering the isles at the super market (and this is the “good” one) no explanation necessary. I am convinced after spending two weeks here in their kitchen that this lack of access and education regarding food is a huge part of their health problems. they think they eat healthy because the packaging in the processed packaging “says” the things they are “suppose to be looking for “low fat” “low sodium” “low sugar”. but they don’t cook in their kitchen …if they can’t microwave it they don’t bother. Fred discussed last night that Suzanne’s supplements far out way her food intake….??????? I had never really considered this perspective…thinking you are being healthy when you a killing yourself with “health foods and suppliments” how is this different from the drug companies pushing prescription drugs??? WHERE IS THE REAL FOOD?
my plan: send a variety of Gordo Beans, some red rice, gluten free hot cereal, green teas (variety of mild green, popped rice, macha) licorice root, chrysanthemum flowers. Floridex, brought maple syrup, Bob’s Red Mill can be ordered on line, as can many other things.
Spices: Turmeric, curry
Misc.: maple syrup, Blackstrap molasses, honey
Bought: a good blender and emersion mixer
Food: oatmeal, Greek yogurt, 2%milk, unsalted butter
apple juice, frozen fruits, bananas, apples (potassium- roughage)
Whole organic chicken – boil with celery can carrot. Makes nice broth for freezer and everyday use. Chicken separated. Kale, carrots, celery, spinach (chopped fine and kept in containers.
Stocks: Chicken and beef bone barrow
Beans can be cooked in small batches (cooked in broth) and kept in small containers.
Quick soups can be made combinding ingredients always using chicken stock
Bread from bakery opposed to the shelves – not great but at least not full of preservatives
Organic baby food (Target)
French toast, eggs, oatmeal (raisons, cinnamon), smoothies, toast, green tea, baby cereal
Soup, toast, grilled cheese (olive oil – good cheese)
Mashed potato with parmesan (careful with salt), soups (sauté veggies and add, chicken, beans)
Plain simple fresh…it’s been a slow process. Many things get the snub nose. Its especially challenging for Suzanne who I think doesn’t like food and really “craves” junk when she does have an interest. They have not really had time to take this all in and I think it will be hard of not impossible for them to carry this out when I leave.
toilet day…enough said.
“come on! you lift horses” (Suzanne) while I am trying to pick her up off the bathroom floor at the chemo treatment center (she fell from toilet trying to get off toilet) – met with great laughter from me to the extent I was rendered useless and had to enlist the aid of two nurses…. apparently she was referring to bales of hay (which I would also have a hard time picking up!!)
we reached for our inner Meryl Streep borrowing from "Out of Africa"…washed hair outside on the back deck. I’m not quite Robert Redford, but it was very relaxing.
Michelle came by today…we all worry, try to find a place where we can help, support, be there, but it’s challenging not knowing what lies ahead and having to each live our own busy lives in between…we worry – together. families do that, it’s good to feel a part of a family for all its challenges – how do people do this alone?
It’s hard leaving not knowing how the days ahead will unfold. I leave promising to return to be there however and whenever I can. But the reality… once I am away and get lost in all that I am responsible for back home…. Suzanne told me the other day “thank you, you have been like a mother to me I don’t have a mother…” the sad reality we share – the beauty in finding this time together - through pain - we find each other, a softness, a bond builds – two lost daughters, having spent a lifetime shielding themselves, open a little towards each other…
