Banging against the screen

Thank you for all your prayers, positive thoughts, emails, cards, visits….everything is so helpful and even though I cannot always respond, the energy you send makes a huge difference. We all appreciate it.

Chemo last time around was….normal! Three days doing chemo in bed, followed by 2-3 days of recovery. In my abdomen, I’m feeling more tension than before, likely caused by the tumors pulling on various body parts, but my psyche is strong and my energy is rebounding.

Lately, it feels like chemo is the most consistent event in my life and everything else is structured around it. That doesn’t feel very good. For example, I close my eyes and I see rooms at Dana Farber. My frame of reference for many things I read or consider have to do with my chemo experience.

I don’t want that. I want my references in life to be more about family and friends and what is gong on in this world. In addition, I now live my life mostly inside my house (or at Dana Farber). I have slowly become a recluse. How did I get to this point? What can I do?

It is easy to say, “Just get out,” and at one point in my life, that is what I would have said. But that is way easier said than done. It has only recently been warm enough to go outside without a lot of preparation (which in itself wipes me out). But now it is warm enough to step outside without layers and with knowing that I can sit somewhere if I get tired. (I can’t do that when it is cold, rainy or snowy.) So I got used to being inside.

Now, when I do go out, it is usually to drive one of the boys somewhere, and then I make a beeline home. A simple errand, like going to Target or dropping off a package at UPS, is overwhelming. The thought of going someplace where I actually have to get ready in advance (like, going out to dinner or a party) exhausts me, because I know that just getting ready usually saps all my energy and then I have to cancel attending the actual event. I haven’t been to the grocery store (or any store) in months, as I worry about having enough energy to make it through. I haven’t been able to go to church in forever, and the last time I was there, I couldn’t sit through a full Mass. I didn’t like that this was my life and I didn’t know what to do.

However, I love that when you put a question out to the universe, you get an answer. I belong to a colorectal cancer survivor Facebook page, and someone mentioned they felt like a shut-in and posed the question of whether this is normal!

Responses flooded in. Normally extroverted people wrote that they could not, and didn’t want to, drag themselves out of the house. Many people actively avoid seeing others, and when do go out, they dread running into people. People stayed home because they are worried about their stamina, their comfort, and their need to be close to a bathroom. My experience isn’t unusual at all.

What to do? I don’t know. But the following sticks with me:

The other day, a bee was in our house, banging against a screen trying to get out. It tried several different places on the screen with the same result.

I couldn’t move the screen to let it out the window, but that window was next to a door. I could open the door to help it fly away.

But the bee wouldn’t be coaxed off the screen, much less toward the door. It repeatedly tried to break through the screen, bouncing back each time. I tried to shoo it and encourage it to fly just a little backwards so that it would find the open door to freedom, to no avail.

I need to do that myself. I need to take a step back and see if there is another option for how to “be” with this whole experience. If there is another option for getting through chemo so that my energy is better. If there is another option for the focus on chemo in my life. If there is another way to live my life when I am NOT attached to chemo or its after-effects.

In the meantime, we FINALLY have warm weather here in the Northeastern U.S. and I’m doing my best to sit outside when I can. I had a birthday recently and was truly amazed to make it another year. (Back in March and April, I wasn’t quite sure of that.) I love seeing friends. The kids are doing well and my husband is amazing. So focusing on all that.

I hope that you have a really wonderful holiday weekend, filled with anything and everything you love, and that if you feel like you are hitting the screen in any part of your life, know that there is an open door waiting for you.

Love and blessings,

Marie

Stopping in the middle

I cannot thank you enough for being there and hanging in there with me and my family this entire time. I am back to ask for prayers and positive thoughts for my chemo session this week, and to thank you for all you do to take care of our family.

For today, just a little story from the week:

The other day, I was stopped at an intersection. If you know the Porter Square area, I was stopped on Upland Road where it meets Mass Ave, facing the T station. If you don’t know the Porter Square area, picture a busy intersection crowded with businesses as well as cars, bikes, scooters, pedestrians, dogs…and everyone generally moves seamlessly.

As I sat in my car, first at the light, a 50-something year old woman started to cross in the intersection in front of me. About halfway through the intersection, directly in front of my car, she abruptly stopped walking and looked down at her cellphone. At first, I assumed she was reading a text, but after awhile, I thought maybe she was looking at a map. No problem – I had a red light and wasn’t going anywhere. I watched her with interest. She stood so very still.

Eventually, the light turned green. But she was still standing there, staring at her phone, almost in a daze. I could have driven around her, but there wasn’t much room and that risked startling her. The cars behind me started honking but I was close enough to talk with her.

“You need to get out of the street.”

She looked up at me but didn’t move her feet.

“You need to go to one side or the other.” I also pointed, because I wasn’t sure she understood English.

She scurried back to the corner and we all moved on.

Her actions (or, non-actions) really struck me. On the surface, it seemed like a stupid move to stop in the middle of the street. But I know people who would stop like that if they were lost, or if they got bad news in a text, or if something else suddenly took them out of their physical reality.

It’s hard to know what is going on in someone’s life. Thank you for trying to understand ours, and for giving the leeway for all the unusual behaviors that can surface that may not feel as stupid as they look from the outside.

The Power of Presence

When I first started this chemo gig, my infusion space at the hospital looked like party central. I invited friends and we gathered into the cramped space. We sometimes had food, we always had laughter, and I eventually ended up looking drugged because one of the anti-nausea meds made my facial muscles droopy and me unable to speak clearly.

Over time, the scene changed. We finally figured out that we could lower the dose of that face-altering drug. I stopped taking the steroids (which made me a crazy screaming person who couldn’t sleep) and replaced them with IV Ativan, which alleviated my tendency to vomit but put me to sleep.

Though we cut back on the party vibe, I was lucky enough to still have a friend to join me each time. They would support me through the port access and blood draw, and sit through the meeting with my doctor. After that, my nurse would administer the Ativan, which would shortly knock me out.

I always suggested that my friend leave right at that point. Why bother to stay only to watch me sleep? And what if I drooled or did other embarrassing or gross things – I wanted to keep my friends and some shred of dignity.

Recently though, an old, dear friend joined me for chemo for the first time. In her bag, she brought a shawl in case I got chilled, and a few other things. I can’t remember exactly what they were, only that every time I needed something, she had it in that bag. I was really touched.

We reached the point in the process where the nurse gave me Ativan, so I thanked my friend and told her that she could feel free to leave.

“I’m staying,” she said simply.

“Did you bring a book?” Her bag was shapeless and didn’t seem to hold one.

“No,” she replied. “I am going to sit with you.”

“I’ll be asleep,” was my weak but best response.

I didn’t have kind of time or energy to dissuade her, so that was that. I thought her idea was a little crazy but I was drugged and in no position to win with logic. And I love her whether or not she has a crazy idea.

So we moved to a room with a bed (for me) and a chair (for her), and I was out.

Some time later, the Ativan wore off and I opened my eyes. The first thing I saw was my friend.

At that moment, I was feeling nauseous and in pain, but my overwhelming feeling was the relief of, “I am not alone.”

I suddenly remembered: I do typically wake during chemo. And when I do, I grope around for the nurse call button. Eventually a nurse arrives who looks me over and asks what I want. I stammer that I need my nurse, she says that she will get her, and leaves.

Everyone is very kind. But they are strangers, and it takes effort to interact with them. After each chemo session, I block it from my mind as part of the whole event.

But today, I remembered, possibly because this experience was such a contrast. And not only did I feel so supported, but my friend looked at me and knew what I needed.

Firmly, she said, “I will get your nurse.”

No call button. No unfamiliar intermediate nurse. My friend left and I knew she would return with my nurse AND the medicine I needed. And she did.

She stayed with me until my chemo session was complete. Each time, when I finish, my husband arrives, and he and the nurse help me to put on my shoes and get me into a wheelchair. I never remember anything from there. But this time, I remembered that my friend was still with me. And that made all the difference in the world.

 

You are always welcome

Thank you for hanging in there with me. I’m still recovering but getting a bit better every day! Just getting out of bed, showered and dressed is an accomplishment. I spend my days lounging around the house between naps. Being in the house for weeks can feel isolating. It is great to know that I’m not really alone.

During one of my lounging sessions, I caught the movie Moonstruck on TV. My favorite part is the last 20 minutes or so. If you haven’t seen it – SPOILER ALERT.

The movie centers around an Italian family. This final scene takes place first thing in the morning. The mother is in the kitchen cooking oatmeal and, one by one, people arrive – either from upstairs or through the front door. First the daughter (Loretta, played by Cher), then the brother of Loretta’s fiancé, followed by Loretta’s aunt and uncle, Loretta’s father, his father, and, finally, Loretta’s fiancé, each joining the crowd in the kitchen, until there are more people than chairs assembled around the table.

When I first watched this movie in the 1980’s, a coworker from a British family told me that she loved the movie but the ending was unrealistic: People don’t just show up at your doorstep! And why would the mom make so much oatmeal?

But for me, growing up in an Italian family, that scene was the most realistic scene in the movie. Friends and family are WELCOME to show up at your door, anytime. And of course there is always food on the stove, plenty for everyone.

As I watched this final scene last weekend, I realized how incredibly grateful I am to everyone who just shows up. Sometimes it is at my door, which helps to alleviate isolation and adds color and dimension to my day. Sometimes it is online, or through meals, or cards, or a myriad of other ways. You are so very welcome. And while I don’t always have something on the stove, I am happy to share whatever I have. Again, you are always welcome.

Love,
Marie

Hallelujah

Leonard Cohen’s Hallelujah is beautiful in so many ways. That melancholy tune kept running through my head following this past chemo session.

The last round of chemo hit me hard. I returned home on Tuesday, went to bed and stayed there until Saturday. On Sunday, I moved to the sofa and parked myself there.  I had a lot of pain, some bleeding, and a phenomenal amount of head fuzziness. I couldn’t think, read (even emails), watch TV, or knit. I could barely speak and I certainly couldn’t carry on a conversation. I hadn’t eaten since Monday, surviving on ice chips and small sips of water. My body had pains I never thought it could have.

I wondered if my body was at the beginning of a final downhill slide. My weight was lower than ever and I looked skeletal.

I had been absent from the family for so long that the kids were losing their grounding. My husband does a great job of being father and mother during my chemo weeks, but it is all-consuming. He needed the weekend to get some work done and maybe even exercise, but that wasn’t going to happen.

Plus, I haven’t had those huge messages from God and the angels that I used to have. I still believed they were out there, but I didn’t feel connected. When I looked at my life, I couldn’t find a sliver of anything I wanted, and I wondered in many ways what death would be like. My thoughts and emotions were dark.

As I lay in bed late one night, the lyrics to Hallelujah again ran an endless loop through my head. I decide to listen to the Leonard Cohen version one more time and as I did, suddenly noticed these words, which lifted me:

And even though it all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah

Yes. Because even through all this crap: Hallelujah.

I started to look for the blessings. I had to really look, but I was, indeed, getting a little better each day. Not as fast as I would like, but definitely improvement. It was a start.

This cancer path makes everything feel like it is just wrong: This isn’t the life I was supposed to be living. It felt broken and crappy but I had to admit, I am still grateful for it.

Even though all this felt so very wrong, if I were to stand before the Lord at that very minute, I like to think that I would still say, Hallelujah.

Love and light,

Marie

(Those lyrics are around 6:10 on the video.)