Update & Free Write

A lot has been happening in the last few weeks.

I came off the Regeneron trial one day and the next was talking to a radiation oncologist and planning for treatment to shrink a growing lymph node above my left clavicle bone). Within a week I was getting fitted for a radiation mask during what’s called a simulation and quickly had six rounds of radiation. The treatment was quick and easy, taking less than 15 minutes each time, but of course getting in and out of the city for each appt. was still a three-hour round trip event.

I didn’t seem to have many radiation side effects and that’s because I had a shorter round of treatment but I have had a few, like a bit of fatigue, and what has turned from looking like a sunburn area on my chest, shoulders and upper back to a raging rash of itchy, blistering, icky and ugliness not helped much by moisturizers, creams, etc.

I started an immunotherapy combination the day after radiation ended. My oncologist and MGH helped me access two immunotherapy drugs not covered by insurance because they are not typically used for ovarian cancer. But, thanks to a request for financial aid and help from the hospital, a drug company has allowed me free use of the drugs for a year. This is a big deal and I’m grateful and after the shit show that happened during the trial, is super appreciated.

I have had my first infusion of what’s referred to as IPI/NIVO which stands for Ipilimumab and Nivolumab. I’m eager to see how the combination works and also aware of the risks as combination immunotherapy has a lot of adverse events. Speaking of adverse events, I have drug-induced lupus as a result of the Regeneron Trial. In addition, I have elevated liver counts but not so high I couldn’t get immunotherapy. Both of those things are likely from the Regeneron drug so maybe it’s for the best I’m no longer on the trial though I’m now getting other forms of immunotherapy.

Despite the risks, we are wanting to make sure a combination won’t help more than a single drug before moving on to another line of treatment. It’s humbling, exhausting, and scary because in 2022 I’ve started and come off a clinical trial, done radiation and am not on a combination immunotherapy and have a cancer tumor in my lymph node and tumor markers that are going up. So, it’s been daunting and feels like a lot of drugs, appointments, and hospital stays in a compressed amount of time for not much benefit.

But, on the other hand, I AM STILL HERE and there are other treatments and trials to try as long as I stay well enough.
Also, it’s not only been daunting. I’ve had a lot of time with my daughter and my family and my friends that has been WONDERFUL. Just to be able to share meals, go out to lunch, go for walks with family, be near my nieces, nephews, siblings, aunt, uncle, cousins, snuggle on the couch, do errands and make plans together, cook together, and talk. It’s been great. I was even well enough to help clear my mom’s patio of weeds and play cribbage (both very satisfying).

I don’t need big bucket list trips. I just need quality time with my loved ones doing the ordinary and simple things people do when hanging out. Also, I feel like I can breathe a bit because I’m not constantly in and out of the hospital or at appointments having or planning or prepping or recovering from things. This means I’ve been able to return to yoga class and I’ve been walking and I have decent energy, at least in the morning, on days where I’ve slept the night before.

I can see my loved ones and make plans. I hadn’t realized how tiring and intense it had been to get weekly treatment and the frequent labs that trials require and so now I have three weeks before the next treatment so much of my time is my own again. That is a gift.

It’s allowed me to step back from the go-do-being on of survival mode and start to get back into my skin, relax at home, and maybe even have some time for writing, feelings, and reflection.

Along those lines, I’ve been doing more writing and more art and trying new things. For example, my friend Kathy taught our writing circle how to do nesting poems (where there is frequent repetition and building sentences up and down). I’ll share what I wrote last week.

Jenny’s Visit

I woke up at 4 a.m.

I woke up at 4 a.m. tired

I woke up at 4 a.m. tired, but less tired

I woke up at 4 a.m. tired, but less tired than the day before. 

Kai was in the kitchen

Kai was in the kitchen last night

Kai was in the kitchen last night breading chicken

Kai was in the kitchen breading chicken and everything in me ached.

Everything in me ached and I couldn’t help Kai. 

It hurt to stand.

It hurt to sit.

It hurt to sleep. 

It hurt to be a body. 

I’m tired of having a body that hurts. 

My body does not always hurt. 

My body does not always hurt but it is hurting now. 

Jenny asks

Jenny asks as we walk

Jenny asks as we walk if I share with people

Jenny says as we walk you are allowed to share

Jenny says as we walk you are allowed to share with people what pains you.

Jenny says I worry that you worry that you are a burden 

Jenny says I worry that you worry that you are a burden but you are not. 

Jenny says you are not a drain

Jenny says you reciprocate

Jenny says I can’t imagine you not reciprocating. 

Jenny says it doesn’t have to be me you talk to but I hope you can talk

We sit on a park bench.

We sit on a park bench and stare at the ocean.

We sit on the park bench and stare at the ocean and each other.  

I know I can talk, I say, but then I can’t speak. 

I know I can talk, I say, but then I tear up. 

I know I can talk, I say, and I know it’s not my fault I have cancer.  

I know it’s not my fault I have cancer, I say, tearing up, but it’s hard to talk knowing my words will hurt people. 

It’s hard to know I will hurt people who love me with my words. 

I know I will hurt people who love me with my words. 

I say it’s hard knowing I will hurt people.

I think it would hurt people less if I was responding better and longer. 

I think I would hurt people less if I was responding better and longer to treatment. 

I say I wish I had better news to report. 

I say I wish there was more that could be done. 

I hate telling people the medicine isn’t working. 

I hate telling people that I’m not working. 

I say I know it’s not my fault 

I say I know it’s not my fault I have cancer but it still feels bad.

I say I know it’s  not my fault I am terminal cancer but it still feels bad to say.

I say I know it’s not my fault I have cancer but it feels bad to make people sad. 

I say it doesn’t feel good to make people feel sad or bad. 

I say it’s not just sad for me 

I say it’s not just me I worry about

I say it’s not just me I worry about.

I remind everyone we have a family disease. 

Ovarian cancer can be a family disease. I feel like I’m the sign of a family disease.

Jenny says, Oh Cis, it’s good we know. 

She says, as soon as I’m done having kids I’ll get rid of my fallopian tubes. 

Take my fallopian tubes, she says.

Take my fallopian tubes, she says. 

I wish my fallopian tubes had been taken before I had cancer.

I say I can talk to Worry

I say I do talk to Worry.

I say I can talk to Worry but I worry my pain will give her cankers.

I say I can talk but I don’t want to give Worry cankers.

I think of all the cankers I’ve caused her in the past, how I burdened her when I was young, when she had four little kids and was taking care of Nana with the same cancer. 

Worry was taking care of Nan and four little kids and I was so needy then. I was so needy. 

Jenny says I was a little kid.

Jenny says I was a little kid back then and I only remember you as happy and fun. 

Jenny says I only remember you as happy and fun.

Jenny thanked me for holding space for her. Jenny has said I’m the voice of calm. 

Jenny says when she asks Worry how she managed four little kids, her Mom says, I had Cis.

Jenny says Worry had me. 

Jenny says Worry had me and I was more than a burden. 

I want to cry.
I want to cry.
I want to cry. 
I don’t want to cry. 
How can I cry and then keep doing what I have to do? 

I can’t cry because I’m in survival mode. 

Maybe I can’t cry because I’m in survival mode and there’s too much to do. 

Maybe because I’m in survival mode I can only survive. 

How can I be in survival mode when I have a cancer I won’t survive?

Maybe I don’t want to make others cry.


We keep walking and I say to Jenny, I do share it all in writing.

I do share, I say.

I do share it all in writing. 

Writing is your voice, she says. 

This morning I woke up and thought I could share more of my writing. 

This morning I left a message and said I could share more of the writing that doesn’t go on my blog. 

I suffer out loud, Jenny says.

I’m all about suffering out loud, Jenny says. 

I suffer out loud and can’t imagine how you don’t I think I hear her say. 

I don’t suffer out loud? I think.

I think I suffer out loud.

Am I closed off?

Am I shut down?

I say there’s not a lot of time

I say there’s not a lot of time for reflection

I think of surgery, chemo, a trial, another round of chemo, another trial, radiation and now immunotherapy. 

I say everything is moving so quickly I’m not sure I know how I feel.

I say everything is moving so quickly and I’m trying to have quality time with Kai.

I am running out of time. I am running out of time.

I am running out of time.

It feels like I am running out of time.

I say everything is moving quickly and I’m trying to have quality time with Kai and my loved ones while I feel mostly like myself. 

While I feel mostly like myself, I say, I’m just trying to keep up. 

I can’t keep up.

I can’t keep up. 

I can’t keep up.

I hate not having

I hate not having the same energy

I hate not having the energy I used to have.

I used to have more energy.

I used to have more time.

I used to have more time and energy.

I can’t do as much as I said. I can’t do what I used to do, I say.

It doesn’t have to be me to hold the space she said, if that’s not our dynamic or relationship or comfortable for you.

It doesn’t have to be me she said but I just want to make sure you know you can share more.

I want you to know you can share more even when you don’t feel positive. 

You don’t always have to be positive or grateful, she said. 

I’m positive? I said. 

Are you positive I’m positive?

I don’t always feel positive. I don’t always feel grateful.

You don’t have to do everything you know.

You can have help, and not just with rides or food or the practical stuff, you know.

People want to be there for you, you know.

People want to be there for you, you know?

Do I know?
Do I know?
Do I know?

You can share more of what’s heavy and hard she says.

I tear up when she talks. 

I don’t feel like I’m hiding. 

I don’t feel like I’m hiding. 

I don’t feel like I’m hiding but it’s a relief to be crying. 

How are you doing with all you have going on is what she wants to know. 

She didn’t want to hear what I’m grateful for or what could be worse. 

She wants to know what keeps me up at night.

She wanted to know what hurts.

She wants to know the truth of my experience. 

How did I become someone who doesn’t quite know this?

How come I don’t remember how to do this?

I have so much I say.

I already have so much I say.

People have already done so much, I say.

It seems greedy to ask for any more.

When we got home we ate lunch and then I ate ibuprofen. 

Does it hurt she said. 

Yes, I said. 

I didn’t say what it was. 

It was everything that hurt. 

Everything was starting to hurt.

Everything was starting to hurt.

Everything was starting to hurt and she left soon afterwards. 

She left before 3 and I couldn’t move much. 

I could not move much after 3p.m.

I googled drug-induced lupus.

I googled drug-induced lupus and cancer.

I googled drug-induced lupus and cancer and pain relief.

I googled drug-induced lupus, cancer, pain-relief, and how to sleep at night. 

I took ibuprofen but I couldn’t sleep. 

I took ibuprofen and listened to music, listened to mediations, and cuddled with Ella in the bed. 

I got up at 12a.m. 
I got up at 2 a.m.
I got up at 4 a.m. 

It was better than the night before but not good. 

I drank kombucha when I couldn’t go back to sleep and I read. 

I read in bed hoping to get sleepy again. 

I thought, at least I’m not keeping anyone else up.

I thought at least the pain is a bit better.

I let myself stay awake, got my heating pad and coffee and read in bed.

I read and rested in bed drinking coffee.  

I texted Heidi, then we talked, and I asked if we could reschedule. 

Once I rescheduled with Heidi I felt better. 

The day is mine I thought. 

The day is mine I thought. 

The day is mine to do nothing.

Heidi says, take a pain pill and a nap. 

Heidi says, we will get together next week. 

Heidi says I love you – now rest.

I felt loved.

I felt relieved.

Today, I only have to work on trying to feel better. 

I asked my body

I asked my body what it needed. 

I need to move it said. 

O.k, I said.

I got up and out of bed. 

I stretched. 

I made a smoothie. 

I opened the fridge

I opened the fridge and saw there was lettuce to use up, spinach and romaine.

There were carrots, cucumbers, peppers and tomatoes too.  

I made a garden salad to have in the fridge. 

I made a salad to have with Kai’s chicken later on.

Yesterday I bought a watermelon and chopped it up for all of us.

These little things are tiny accomplishments.

I love to have good food in the house. 

I still have these moments.
I still have this food.
We still have this time.

Today is better.

I’m tired but today is better.

Today is better because I have less pain and little to do. 

I will take it easy today. 

Today, I will admit I am not up to much.

Today, I will tend to my tired self. 

I will do more another time. 

I will be able to do more another time, I hope. 

Today, I will let myself cry, suffer out loud, exhale, and be real. 

Today, I will say, I am tired.

Today, I will say, I am tired of being in pain. 

Today, I will say I got up at 4a.m. and will rest for the rest of the day. 

Today, I will believe it’s o.k.

Today, I will believe it’s o.k. to be tired.

Today, I will believe it’s o.k. to be tired and cry.

Today, I will believe it’s o.k. to suffer out loud.

Today, I know.

Today, I know I feel better

Today I know I feel better because I cried while talking to Jenny. 

I feel better today because I cried while talking to Jenny and then wrote.

While talking to Jenny I believed I can tell the truth and be loved no matter what. 

No matter how tired or in pain I am, I am loved.
No matter what I am loved. 
I am loved. 

(Note: I HAVE THE ABSOLUTE BEST FAMILY, THE BEST FRIENDS, THE BEST WRITING CIRCLE! I wrote this last week and this week I am sleeping better, have less pain, and I’m sure it is due to being able to be honest and real about what was hard. I know writing heals. I know sharing sorrow is as sacred as sharing joy. I just forget. So, at Jenny’s sacred invitation and with her reminder, I have decided to add more of this stuff to my blog.)