Today was a rough day. No particular reason necessarily. Sometimes this cancer journey just gets me down.
My chest is hyper throbby and achy due to injections into the expanders. I guess I was also hoping for and dreading in equal measure learning about my next steps on this cancer journey. Without the oncotype analyses back, we can’t yet make a plan. And, to top it off, I was over our hotel room. Don’t get me wrong. It’s a nice room. But I’ve been in it pretty consistently since I got out of the hospital on May 11. So, to sum it up pain, liminal space, and boredom did a bit of a number on me this morning. I was sad. I was overwhelmed. I was so bored. I didn’t cry, but I could have at any moment.
So, I got up, washed my face, brushed my teeth, and put on makeup. Those rituals always make me feel better. My sweetie took this as an invitation to get me out of hotel jail for a bit after he got off work.
A few days ago he found a nice Mediterranean restaurant D’Vine in the strip mall across the street, so he rolled me over there. (I’m still not allowed to walk much. So excursions either require the car and drop off at the door, or a wheelchair.) We sat outside on the patio on this glorious sunny day, a gentle breeze blowing, and enjoyed falafel, fatayar, fried cauliflower, lamb kabobs, and lentil soup. Everything was so fresh and flavorful and I topped it off with some rice pudding.
Then Andrew rolled me out into the sun to sit for a bit. It was fabulous to feel the sun on my face and the breeze on my skin. Now back home to the hotel for a nap.
It’s amazing how energy shifts, in this case a change of scenery and some yummy food can change my experience of a day. I’m becoming clear that navigating this cancer journey is going to require me to be mindful of when I become overwhelmed and embracing energy shifts (doing something different, going somewhere different) as important coping mechanisms.
Today’s post is one of gratitude. I finally got my second set of drains out, and I feel so much freer. I’m still on house arrest for another week, which means walking back-and-forth to the bathroom and to the second room in our little suite, but that’s it. If Andrew takes me to a restaurant, he has to drop me off at the door and pick me up at the door. If we decide to go for a walk or to the mall next door, I have to sit in the wheelchair. I still can’t lift anything over 5 pounds, but I can shower whenever I want!!! 💃💃💃
The last 3+ weeks since my double mastectomy have certainly been an adventure, and I have learned some things.
1. Trust: Having a medical team you trust is pure gold. My breast cancer surgeon is both renowned in her field and an ex-student. She was the top graduate in her class as an undergrad, and I was her mentor. She responded quickly when my mammogram showed areas of concern. She facilitated mammograms, ultrasounds, biopsies, and an MRI. She encouraged me to get genetic testing. Most importantly, she put together an amazing team for me and has supported my every step. She made the stages of grief so much easier as I undertook this cancer journey. I could just relax into my trust. I have felt all the things – denial, anger, bargaining, depression, and acceptance (still working on this one), but mostly I’ve felt cared for and supported.
2. Pain management: Pain is no joke and managing it can be a complex process requiring clarity, advocacy, and assertiveness. (I’ll write more about this in a later post.) Just know that it’s hard to do for yourself when you’re the one feeling the pain. Sometimes it takes so much energy. Have a good advocate and coach your advocate on what you need.
3. Cry: Crying is cathartic and it feels good sometimes and frustrating others. That’s ok. I’ve learned that I cry out of pain, out of frustration, and out of joy. That’s all important!
4. Take a longer view: A good friend reminded me not to get mired down in the day-to-day – especially if the day is disappointing – but to take a longer view of progress. Over the last weeks: My arms have gotten more flexible; I can do more for myself including washing my face, brushing my teeth and hair, and putting on makeup. I can now go out to eat. I can toss snacks to Kloi (our cat). I have a bit more stamina. So many little things that add up to real progress. And now my drains are out!!!
5. Be vulnerable: Vulnerability leads to care and grace. My counselor told me that if I ask others for what I need rather than pretending I have it all together I allow them to provide service and to grow as they help me. That might have been my hardest lesson yet. I’m always open to helping others, but when I need help I always fear I’ll be a burden. Weird contradiction, I know.
6. Get counseling: Cancer sucks! And seeing someone who’s paid to listen and offer insights is invaluable. I’m seeing a counselor and I highly recommend it. As part of the breast cancer program here at Providence, St. Jude in Fullerton, Ca, I get a certain number of visits. While talking to friends and family is important, venting to someone who I’m not afraid to hurt with my sadness or despair, or frustration is very helpful. I also share my joys and small successes. And he offers me unique perspectives.
7. Grace, patience, and self kindness: Giving myself, grace, and approaching this situation with patience is probably the best thing I do for my mental health. I’m not perfect at it, but I don’t get down on myself; I don’t judge myself; I try to stay calm and accept whatever the moment is presenting me. And I cry. A lot! But I already said that.
8. Love your people; love your pet(s): Opening myself up to my people (and Kloi), allowing them to share my journey, accepting their care and companionship makes me feel less alone. Plus they each have a unique view or approach that I find uplifting.
My rocks: Andrew, Alyssa, and StefanKloi
9. Be careful not to isolate yourself: I know that since my surgery, I’ve isolated myself a bit. I’m kind with myself about this because I recognize it’s not my typical way of being in the world. That said, this is not a typical situation. Another friend told me to trust myself and what I need, that this time is about me and accepting what I’m feeling without judgment. I get to be in charge and focus on my needs. There’s no right way to do this, but it’s important to put myself first – not necessarily a comfortable position for me.
10. Follow whatever spiritual practice works for you: It helps to recognize that I am part of something bigger than myself, that God, source, the universe, my higher self have me. I will get through this – whatever that looks like. For me, seeking out the beauty around me is the clearest indication that I am not alone.
I’m sure there will be many more lessons as I proceed on this cancer journey, but today, I’m just grateful my drains are finally out. And now, I’m going to take a shower! 💃💃💃
For the last few days, I have focused on living in the moment and gratitude. My wonderful husband helps with that so much.
Several days ago he took me ring shopping because we used a placeholder ring for me when we got married. He found a gorgeous, ruby and diamond ring as well as several other lovely rings. He showed me pictures of them and told me when I was feeling up to it, we could go look at them. When I felt well enough to troll the mall in a wheelchair, he took me to see them and try them on. I fell in love with a ruby and diamond ring, as he knew I would.
That day, I was feeling pretty pessimistic. A gorgeous ring like that seemed to be a portent for the future, and I wasn’t confident in what the future held. I asked him to roll me to a sitting area where we could talk face-to-face and I could tell him my fears. My fears of not living, my fears of debilitation, my fears of treatment, my fears of not being , my fears of losing myself. At that moment, I seemed to have lost my optimistic self. I was embracing a scarcity model and pessimism, two things that do not typically characterize me. Andrew‘s response was “My love, this ring is a symbol of how much I love you, how happy I am that you are my wife, and how happy I am that we are sharing our lives together”. The interesting thing is that as soon as I said the words and heard Andrew‘s reply, the weight of those fears lifted.
Yes! There was no reason for me to be this pessimistic, this fearful. Everything so far had gone my way. Yes I had had a double mastectomy, but they got all the cancer with clean margins, and there was no indication of cancer in my lymph nodes. You can’t really get much better than that following a breast cancer diagnosis. I had decided on breast reconstruction surgery, so that was going to happen as well. I needed to focus on how fortunate I was and try to be as positive as I could.
That does not mean that I’m positive all the time. I’m not. I have cried more in the last month and a half, since the diagnosis, than I’ve cried in my entire life. And as my children will tell you, I’m a crier. When they were little and we saw sad or poignant commercials, TV shows, or movies, they always looked at me to see if I was crying yet. Often I was – or at least I had tears in my eyes.
I think it’s critically important to allow myself to sit in the fear and the sadness that are part of this cancer journey. Normally, I approach those emotions as Chevy Chase did at the Grand Canyon in National Lampoon’s Vacation. I bob my head three times and I’m done. This time, with this journey, it’s not so simple.
That said, gratitude, and focusing on the present really help, at least sometimes.
The other day my sweetie took me to make candles. I love candles and it was a warm, sweet, fun moment and I was fully present.
This morning we went to see the medical oncologist for the first time. I was extremely apprehensive about that visit. I teared up a couple times this morning in anticipation. None of the treatments to prevent cancer from coming back are very much fun and I was afraid. My oncotype analysis is not back yet, so this was really just a preliminary meeting. After meeting with him and with my plastic surgeon, Andrew was pushing me back to the car in the wheelchair when I decided I wanted to grab salads and just sit outside and enjoy the beautiful day. So, that’s what we did. We also did one of our favorite things and played games on Andrew’s phone.
These three examples of being in the present moment have really helped ground me. I know I won’t always be there. I know there is still a lot of fear, uncertainty, and angst ahead of me. I also know how very much I have to be grateful for.
Deborah's Deliberations 