Epiphany (which took way too long!)

I had the most amazing experience of doing a facilitated visualization to help me overcome anxiety about my upcoming scans (TOMORROW!).  I have been seeing an oncology-specialized therapist and we have been working on anxiety reduction and finding more joy but she has a specialty in guided meditation and visualization for chemotherapy. I am not too stressed during my chemo sessions - I'm not sure why - I mostly tune out and watch something funny, text with my sisters, and assume the chemo is working.  But when it comes to scans (which I didn't do at all during the first cancer) I get VERY anxious about the process itself and the outcome. So we spent a session doing an interactive visualization, which she then used to create a guided visualization I can take with me to my remaining chemos (which she thought would be good practice even if they don't stress me out) and the scans. (There were two chemos left at the time we did this, now there is just one, woohoo!)

So what's the epiphany? Well, let me start by saying she had me use my own words to describe how I imagine the chemo working to get rid of the cancer. If you've been reading this blog through my whole cancer 2.0, you'll remember that the oncology nurse I had during my first chemo called Adriamycin "the assassin", and I sort of loved that.  However, when I think about the chemo doing its job, I don't really see it as like an attack or violent, so using my own words to describe what I believe is happening was powerful, because it made me feel more connected and at peace with the process. I see it as a bright yellow light that sort of removes the darkness of the cancer cells, and I see it being led by a teeny tiny little amorphous conductor.  She had me draw a picture of this which I will paste below. So now I have this strong visual to cling to around healing and dissolving cancer.

The epiphany came through the second part of the visualization which was geared toward the scans.  She had me think about everyone and anyone who has had my back at any point throughout my entire life. It could be my doctors now who are treating my cancer, or an elementary school teacher, or neighbors, friends, families, coworkers, the point was EVERYONE who has had my back ever. She had me imagine them all crowding in to the room where the scans were being done HAVING MY BACK and sending me warmth and healing and positive vibes, and she spent a good chunk of time letting me reflect on who would be in that room, and the number of people in that room. If you're reading this, I imagine you are in that room.  She reinforced how full the room was. How the room spanned every part of my life. And, how everyone in the room was there with me to receive the good news of healing together. (Gosh, even thinking about it makes me cry.) 

Anyway - it made me realize I had missed a major point through the chemo phase of this process, which is that I AM NOT ALONE. I have felt so lonely because no one I know has dealt with this same experience, in my mind the hardest and scariest experience imaginable, and so I felt like I was all alone. The visualization woke me up to the fact that I have hundreds and hundreds of people with me and it was so comforting.  As I am writing this I realize a bunch of you might think I'm an idiot...I mean the number of gestures of kindness and wellness sent our way have been remarkable so it's not like I didn't think people were wishing me well, I think the visual of people being in the room with me awiting good news was powerful and changed the way I was looking at my situation.  I hope that makes sense.

Anyway, that's all I wanted to share and I wanted to make sure I shared it before my scans tomorrow because if it's not the news I want from the scans I will likely lose connection with the feelings of comfort I have gained over the past week (hopefully I can work back to feeling them.) And I wanted to say thank you to everyone reading this for helping me get me to where I am today, for shaping me and for having my back always but especially right now.  I truly would not be who or where I am today without you.

If you have any energy to spare (and I know it's sparse right now bc things are HARD across the board for everyone) please send some my way for clean scans tomorrow which will set the path for the least difficult surgical protocol in November.

Here is the pic I made of the conductor of light dissolving the cancer cells during chemo. I draw like I'm four, but that doesn't diminish the power of the visual for me. LOL.

Be back soon with an update from the scans and next steps!

Sherri

Overwhelmed with Hard Emotions (ANXIETY, ANGER AND FEAR)

I'm putting a disclaimer on this one. It's dark and you might not want to read it. The longer treatment goes on, the more steps there are and the longer we are isolated, the more dramatically dark my thoughts can go. I needed to get them out of my brain!

Yesterday morning I had to go for my blood draw REALLY EARLY because labs were closed Monday and I need current bloodwork before every chemo. I got there at 6:10 AM for a 6:30 open time and there were two people in front of me, both of whom mentioned they were there early because they had 8 AM appts at Sansum.  I responded that I had an 11:20 appt for chemo.  The woman in front of me expressed her compassion for my situation and shared that her husband had cancer, and had two recurrences before he died. She told me if she had gone through what he went through the first time, she would have opted out of treatment for the recurrences, and told me I was SO COURAGEOUS. I countered by sharing that I have two daughters who I'd like to have a mom for as long as possible, so I am going to do everything I can to make that possible.  She went on to tell me about her childrens' grief at watching their dad die, and how for one of her kids it took more than 10 years for them to fully recover from the loss. I know she was trying to be kind, but JESUS MARY MOTHER OF GOD. This is every mom with cancer's biggest fear and I try not to think about it. It set off a bunch of anxiety and made me feel weepy and I need to find a way to re-shelve that fear! (And tell people to stop talking when I need them to keep their thoughts and feelings to themselves.)

This is not the only time I've been triggered and I'm sure it won't be the last.  We met with our Financial Advisor about a week ago and he asked when the last time was that we updated our Trust and specifically whether we were still comfortable with the plans we specified for Natasha and Karina should both Chris and I pass away when they are minors.  (FWIW, we're not! I mean, no one loves their kids like their mom does, honestly, and who can effectively replace parents?  No matter who we choose, they won't likely live in Goleta, so our kids would also lose all their friends.  Ugh, it is a terrible thing to think about with no good plan. Even best case scenario with Chris single parenting makes me feel sad. They need me, goddammit.) 

My oncology therapist challenged me last week to work on building stronger connections in my life with the people who matter most to me and who can help me emotionally get through this time. My totally uncensored response was that I don't feel like anyone can relate to what I am going through, so deepening connections feels shallow and fake. It also redirected my mind to the fact that my kids don't have enough REALLY CLOSE adult relationships in their lives to be OK if I am gone. It will fall to Chris which feels so overwhelming and our other relatives who mostly live in different parts of the State or out of State and who have families and lives of their own so I feel like I need to fast track these deep, rich relationships with people nearby who can help raise my kids in case I am unable to do it.

Every time someone complains about a minor inconvenience of the pandemic (including my kids) and "safer at home" orders, I get irate because my experience of the pandemic is centered on the fear that my time here is short and my experiences are severely limited because everything is closed and travel is limited. It also makes it difficult to accomplish the point above - deepening relationships - when everything is distanced and masked and scary and hard. 

I've also been thinking about whether I am going to die looking as ugly as I do. Or whether the way I look will get worse.  It's so shallow - but seeing my reflection or the random pics my kids take of me is shocking and I hate it.  I want to be remembered with hair and eyebrows and fewer eye bags.  I wonder if I'll lose mobility with my surgery and if that will be even worse than looking weird, ugly and unfamiliar. If it will limit what I can do.

In case it's not obvious - moms with cancer AGONIZE over the fear of not being there for their kids as they grow up. It was the first thing I thought of when I was diagnosed with my recurrence - what will this do to my kids? How do I say goodbye? Will they remember me? Will they have to watch me die? How do I even begin to explain this to them? How do they not feel abandoned? Should I write them a letter for every birthday, make videos, record my voice? I mean to be cler, I think knowing the timeline based on actual science within which you are going to die, and what the process is going to look like, and how it will happen is ABOUT THE WORST THING I CAN IMAGINE. But then adding abandoning your kids to that horror, it makes me lightheaded and barfy to think about. I still think about this regularly even though I am SO HOPEFUL everything is going to go to plan and I will be cured (for good I hope).  

Anyway, if there is a point to this rant, it's that if you encounter a mom with cancer, don't ask her the hard questions or share the tragic stories or in fact do or say anything that does not consider the horrible situation she is in. There is no dark thought in your brain that has not already been in hers probably 1,000 times. She doesn't need anyone to point out the devastating possibilities ahead. If you have a personal cancer story that doesn't end with the person being cured and living a long happy life, keep it to yourself! Just love her, let her vent all the fears and craziness to you with no shallow platitudes back, help her laugh and LOVE ON HER KIDS!

Ugh - that was a lot. Sorry, I really did just need to get all the crap out of my head!

Things that are making me happy:

• I had chemo 13 of 16 yesterday - I am getting so close. (Although the surgery terrifies me, but I look forward to being done with the full chemo phase of treatment and getting my hair, eyebrows, and eyelashes back.)
• My hair is perhaps starting to grow back - Karina said my scalp feels like a horse and it does feel like there are some super teeny tiny hairs growing their way back in. We're talking like a mm or something, but it's better than bald scalp!
• The show Better Things - I finished it last night. A relatable story about being an imperfect mom to girls.
• My nightly walks with Karina. Karina has so much anxiety right now - about Covid, me/cancer, and my mom who has been unwell. She is unable to sleep, cries a lot...it's heartbreaking. We have been walking a mile every night after dinner and she says it's her favorite part of her day.  She is such a sweet love.
• Having the kids home. It makes me crazy and is hard and I am also selfishly grateful to just be in their space as much as possible, because there is no telling what the future holds.
• Smart and inspiring friends who remind me of things like focusing on what I can control and that good things, memorable things happen even in the midst of our worst moments and not to miss out on those. 
• I signed up to be the La Patera parent rep on the Goleta District Advisory Committee because I have so many opinions and ideas about our schools. Excited to start participating at the end of the month. (The Public Engagement Commission I sit on also started back up with the virtual meetings in mid-August and it felt good to feel of value again!)

Things I struggle with (on top of all the crap I spewed above):

• Mountains of paperwork: Our systems in this country suck. The mounds of paperwork I have to complete for four different entities to actually get disability pay while I am disabled that I have been paying for for decades is disgusting and ridiculous. Every day there is new paperwork and everything takes forever so right now I am living on 10% of my income because everything else is still "in process"  including the individual policy I pay for myself and have paid thousands and thousands of dollars for. Add to that the mountains of paperwork for my mom who was hospitalized for 10 weeks and is now in a subacute rehab facility, plus paying her bills and managing her emails.  It's a lot of really annoying and stressful administration.
• Shutting out the noise of our world falling apart: An unprecedented pandemic (which is somehow polarizing) and global recession, what they are calling "once in a generation" wildfires across the West (global warming!), politics, racism, distance learning (also polarizing and causing people to be so mean to teachers, I don't understand it), unemployment and poverty...it feels like so much is wrong in the world and it's hard for me to shut that out and feel hope.  I keep trying every day and am finding new ways to digest news and events without destroying myself, but it's hard.  I feel like we are living through the darkest of days. I hope they are not also among my final days. :(

Some inspiration:

As always, thanks for reading!