The fact that I blogged about cheese yesterday is hysterical. Since around 8pm last night, I have been MISERABLE.
Cheese…? Those were the days.
Worst aspects: leg pain. Constant and debilitating. At times I can barely walk from the bed to the bathroom without feeling like my trunks are going to buckle. The sensation is best described as what shingles feels like (get vaccinated for shingles please; I’ve had it and it sucks).
Picture a newborn flamingo trying to navigate a rocky beach. So cute, but so pathetic.
Along with leg pain comes restless leg syndrome. It’s like my legs have Tourette’s syndrome. They cannot be controlled with my logical brain.
Nausea: pretty basic side effect. I’m switching off anti-nausea meds every 5 hours.
Taste/appetite: gone. Here is what I’ve eaten today: small cup of Rice Krispies, handful of fruit, small cup of yogurt, handful of Wheat Thins, small cup of applesauce. All of it tasted lame.
I want to sugar coat this for you all, especially women with breast cancer who will follow me, but I can’t. This is rough. Like, the worst flu you’ve ever had.
It feels claustrophobic to know that the poison is in my system and there is nothing I can do to rid myself of it. I feel like a genie in a bottle, except instead of plush decor and Barbara Eden, what’s inside is a gang of scrappy murder cells in a West Side Story back alley.
I want this to be over so badly. I want my facilities back.
People keep asking me, ‘Now that you have cancer, what kinds of things would you like, in terms of support/presents/food?’
I could give you a long, detailed list but what it breaks down to is simple. I want your compassion.
The food and the play dates for our kids are stunningly important, but what hits me deeper, is sentiment. Listen to me. Ask questions about my disease and how it affects me. Allow me to answer you.
The next time someone I know is diagnosed, what I want to offer to them immediately is my attention. They need to know who will be a stable part of the safety net.
Some of the most powerful connections that I have made since diagnosis are messages from people I barely even know. They have some deep resonance to me. They express themselves generously, and in a way that is so genuine that it almost knocks me over.
Thank you to all of you who have reached out to me in meaningful ways. Those connections help me so much on days like today, when I wonder if I can do this again. For another month, day, minute…
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I love you, sister.
Dear Grace, I am thinking of you every night as I read your posts. You are a warrior and I know this will pass and that you will forever be compassionate with others with this horrible disease. I had two sisters with breast cancer and I never really knew what they went through until now. And my mother had it also. Unlike all my siblings and mother I don’t have the Braca gene. Every day your post helps me to continually understand what they all went through, I will think of you every day and pray for a time when pizza will taste good again. Looking forward to our lunch someday. Love Mrs. P
Hi Grace, my name is Brenda and I know you through Carron and Ben – Ben’s dad is my brother, Ray! I read your messages every time you write one! I can’t wait to read what you have written and only hope and yes pray that somewhere in your message there is a glimmer that you might be feeling better or be more comfortable. I have wanted to response but didn’t have the right words until this evening when I read your posting. First of all – your writings should be put into a book – you are an amazing writer – I know that doesn’t help your diagnosis of cancer but hopefully your writing about your disease does In some small way give you comfort. I wish I lived closer and could help in some small way – maybe find some food that would help or just give you a chance too talk out everything! I just know that you are an amazing woman who just had the unluckiest day when your breast cancer diagnosis was made. Keep writing and soon – hopefully very soon – you are going to feel better!
Even now your liver is working to diffuse the toxins. You will not feel this bad everyday through the end of treatments. I promise.
Nox vomica homeopathic pills are a good addition to the anti nausea toolkit.
I also ate health food store ramen with tons of fresh ginger grated into the water, and a squeeze of lemon. Tasted less like dirt and helped with nausea. Probably will never have it again, but it worked then. Cream of wheat cereal, was a mainstay- my treatments were in winter.
Swishing Aloe Vera juice helped when I got mouth sores.
If you have an extra sleep space at your house, you might try making a healing bower- I spent the worst days in our guest space- it let me sleep weird hours and not worry about torturing my husband with my restless middle of the night self. He was better rested to be my support wing man.
My heart is sending love to you and your family. It is hard to imagine going through treatments will smaller children, my kids were older, 11 & 15.
Love and light
The leg pain! When my mom, who beat cancer’s ass, was getting her chemo she said the same. It was by far the worst symptom she felt…and I know there a lot of asshole symptoms that went along with it which made life pretty miserable for a while. It honestly was one minute at a time. And she did it. She effing beat cancer. I look back at those “on this day” memories on Facebook that come up (four years ago) and see photos of that time, and I am so incredible proud of her, thankful for all the nurses and doctors who helped her. But mostly proud! She made it threw all that chemo hell, and you WILL too!! Your family is proud of you right now. Thinking of you and sending positive vibes.
A painful and beautiful post. Compassion is the key. So proud of my warrior niece.
Grace, you don’t know me but my wife has breast cancer. I know I’m a man and somehow supposed to suppress my emotions and become a stone giant but that’s not me. I have seen the blank look on people’s faces when they ask how we are and I give them truthful answers and not some palpably soft version. I’ve seen friends just scatter into darkness almost like they thought our cancer was Voldemort. Anyways, I know the feeling of wanting people to actually be there and not just drop of stuff or pick my son up. Thanks for your words and honesty.
So gut wrenchingly honest. Incredible, forthright , real, Grace. Thank you for sharing your journey.
I have been lucky/ fortunate to never have had to walk the journey/odessey you are now on. Stay strong, positive, and shoulder on girl. You CAN and WILL get rough this. Love, and prayers from your 2nd cousins maybe (?) mom-in-law
The leg pain is the worst. I have found Claritin helped. I think you mentioned it in another post.
For what it’s worth, pot made me feel MORE nauseated.
RLS was relieved, sometimes, by Zanax.
Has your doctor given you “Magic Mouthwash” yet? The dry mouth was awful too. One night I sent my husband to the drug store to buy every product that Biotene made.
Prayers for a quick recovery. My old school chum is 9 years into her stage 4 breast cancer. She looked up and uses more nature methods. You can beat this! I’m truly sorry for your pain and lack of taste.
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