In my book club they often tease me because I kind of like the sad dramas and tragic stories. But now I'm getting picky. When Don and I sat at the kitchen table working on a jigsaw puzzle, it seemed downright heavenly. I clicked on The Moth Series, a Podcast program with talented storytellers. We listened to 3 stories that started out delightfully light and ended with gut-wrenching shared memories. One was about the torture of seeing a father die of cancer. Another was similar, but about a mother. The third was about a child with Aids. "Oh this is uplifting!" I remarked to Don. He invited me to switch stories, but I was drawn in by the skilled storytellers. It was sad, but it was okay to feel that. And I could also feel thankful, because my situation was less dramatic than any of those stories.
Earlier we taped a favorite CBS News show, Sunday Morning. We settled in to enjoy, then suddenly I was wincing at comedienne, Tig Notaro. She greeted an audience with, "Hello! Good Evening! How is everybody? I have cancer!" I rolled my eyes and griped, "I'm feeling a little bombarded here!" But I wanted to watch. And she made me laugh. She had breast cancer too and she was cutting through the awkwardness of that word and making us laugh along.
I may have grown up in a time when the word cancer was almost whispered. But I'm glad it's 2016 and we can talk and even laugh about cancer, now.
These last 5 weeks have been like slow motion. First it was the time that dragged, as I paced and fretted over getting answers. Then my body became the slow thing. I moved like an elderly person the morning after surgery. Now, 2 weeks later, I'm still not leaping up stairs.
This funny little toy is a reminder that I've always preferred being on the go. My mom gave me this toy when I was young. She teased that I was her "little angel on wheels"... the figure once had wings. I didn't even know what that meant, till later. But I do know the "Mom tapes" that still replay in my head are, "Slow down, Beth." To this day, I have to remind myself that it's better to pour the coffee more slowly, so you don't have to waste time grabbing the sponge.
These past few weeks have not been my ideal kind of vacation, but I've worked puzzles and read during the day. I've gotten around to playing piano and back to playing ukulele. And I'm not in a hurry, so why not wander out to the patio with my coffee before the day steams up? I always thought of myself as someone who stops to smells the roses. But I think smelling as you rush by, is not the same thing. I'm learning!
For some unknown reason I was wide awake last night, until 4 am. I wasn't even stressed, like I have been for weeks. I tried reading some more at 2 am. I stared at the most boring of all movies, at 3 am. Finally, I went back to bed at 4 and nodded off. Even then, I didn't blissfully dream. I dreamt that Don's alarm went off and then mine. In my dream I hollered at him to let me sleep, but he reminded me we had houseguests to entertain.
When I later woke at 6 am, Don's alarm hadn't gone off yet. I was quite pleased to realize we had no guests coming. I was also relieved to know there were no important meetings on my schedule or a tennis match that needed to be won or young children that needed a mother's alert attention. Insomnia is a whole lot easier to handle when you have a clear calendar.
There's a lot of praying in this world and that is fine. I just didn't like it when all of a sudden people were graciously praying for ME! It made me feel like I was about to die or something. Besides, I'm just one of those people who likes helping others. I don't want to be the one who needs help. I remember fussing with my first grade teacher,when I wanted to button up the back of my paint smock, ALL BY MYSELFI!
But I started to feel more comfortable when I realized people care and they offer their support in many ways. An elderly group I work with, suddenly wanted to be my "Prayer Warriors" and I grinned to picture them. My uncle asked if he could put me on his church prayer list and I was touched. I saw praying hand emojis on Facebook and they didn't look so silly anymore. My future daughter-in-law explained how her grandmother in Thailand was making beautiful flowers for a special Buddhist prayer offering in my honor. A Muslim woman I had never met, teared up when she heard I had cancer and she said she would pray for me. A friend of a friend wrote me an email. He is quadriplegic, but he offered me humor and support and ended with "God Bless and Blue Skies". A friend wrote on my Facebook, the word, Alhamdulillah , which I had to look up. It's an Arabic phrase meaning "Praise be to God" used by Muslims as well as Arabic-speaking Christians and Jews.
So, yesterday I went for my Post-Op appointment. My cancer was suddenly being described as Stage 1, not 2! The tumor was smaller than they had predicted. Or did that tumor just get bombarded by all those well wishes from near and far... and those prayers from so many religious. That's a pretty nice thought!
I expected to be sore at first. I brushed my teeth with my left hand. I found button down shirts to avoid the painful reminder of lymph node removal. (The tumor removal doesn't even bother me) But 11 days later, I'm still wincing when the car drives over a speed bump or when I try to chop vegetables or I lift an arm to blow- dry my hair...
Then I remember I can walk. I'm not trying to carry a coffee mug with crutches. I'm not confined to the couch, hushing young children. I'm not lying flat, in throbbing pain. And most of all I am not enduring this for a lifetime. This soreness is a tiny reminder that I'm alive and healing. Every time I feel a zing or a zap of pain... I'm just going to announce (in the tone of my choosing) "Hallelujah...that hurt!"
After a week of being cared for by my husband/nurse, Don... I had to give him up for a couple hours. It was time for Don to take care of his toe, that he injured hiking a couple months ago. He returned from the doctor with a missing toenail and fancy red bandage. I was sad that I couldn't be as good a nurse to him. I couldn't lift the water tub for his soaking. But I did make sure his foot was on a pillow and I brought him some tea!
We laughed about his clown toe (when it wasn't hurting) and I went off on my first alone outing, 2 blocks away. I came back with some fancy toes, too. Its' sort of fun having someone to heal with!
I was able to run and do some weight work in the weeks before surgery. That helped a lot with the stress of all the unknowns. I feel less stress post surgery, but I just learned it will be a couple more weeks, before test results determine what my treatment will be. So now I'm back to stewing... will I do chemo? How long? And stressing over how fat I feel, since I can't burn off all these goodies I'm consuming.
But, this morning my mood lifted when I received an email from someone I don't know. I read, then took a deep breath and felt so thankful for all the good news I've had with lab results so far. I was reminded that my situation is a bump in the road and I will get through this and back to exercise and routine.
The email was from David Hartsock. I learned about him from a friend, who was raising money after David's skydiving accident. David was an instructor. He is now a quadriplegic. But he also became a hero, when he was able to cushion the fall of his student when their chutes malfunctioned. David lives with his mother now and fund raising efforts are helping to keep him there, instead of a nursing home.
David will not be back on his feet running like I hope to be after 9 or so months. This is his life. Yet, his email was positive and cheerful. He thanked me for my donation and said he'd heard about my cancer. He was funny and supportive, although he was the one in the wheelchair. I thank David for that message and I will always think of his positive support, when I get a bit down about my bump in the road.
Don and I are basically retired, so no real work complications. But in recent years my volunteer work has evolved into a program I call, The Quilt Connection. I regularly visit 5 facilities where I gather with senior groups. We don't sew, but we gather around my quilt to share stories, music, ideas... like real quilters once did. It absolutely pains me, not knowing when I'll see these folks again.
I started my first group at Silverado, when my mother was a resident with Alzheimer's. I wanted to create a group for her, full of laughter and conversation. I told stories at first, until I realized their stories were much better. I loved providing the weekly activity for my mother, but after she died I realized I was hooked. I continued at Silverado, but started programs at other Senior Centers and Skilled Nursing Facilities.
Over the years I've bonded with so many folks. I never missed a gathering, unless I was out of town. Then I would worry... because the Alzheimer's folks really would forget me. and sometimes an elderly friend passed away and I knew, my most active group would playfully give me a hard time when i returned.
So I called the center directors and I shared my news. I didn't know my treatment plans, so I couldn't say when I'd be back. But I felt relief. They would know how and what to share with my dear "Quilt Groups".
A few days after surgery I got a phone call from Betty, one of my dear regulars. She's older than my mother, but she works her cell phone like a teen! She called because she was worried. We both ended up laughing on the phone. Betty was relieved to hear my strong voice and I was eager to hear her comforting one. My mom is no longer here, so Betty got to step in and give me a mom pep talk. Thanks Betty!
Yesterday I was excited that they could squeeze me in to get my teeth cleaned. It was almost a week since I'd had surgery, so I was ready to get something done. But I was jolted by the friendly office faces who didn't know my story. "Hi! How've you been?" Then I was handed an electronic tablet so I could update my records. I sat there in the comfy waiting area and stared down at the list of health conditions. These forms have always been easy. I fly through. But then I saw that word, Cancer, with a box beside it. I felt a lump in my throat as I clicked the box. This is now my health history forever. I was surprised how that numbed me. I felt a little sullen as I continued to answer more questions like, "Have you had any surgeries in the last 2 years... if yes... explain..."
But the good news is.... the dental chair felt soft and dreamy, with Food Network distracting me from above. "This is so easy." I told my gentle hygienist. I keep on my clothes and shoes and lay back... and you just clean my teeth."
I don't feel like every stranger in the world needs to know my gloomy business. But recently I had 2 encounters that surprised me.
Yesterday, I headed out of the house for the first time alone since surgery. In a shop, I spoke with a woman wearing a hijab. She was young and beautiful and a wonderful reminder that hair isn't everything... in case I have chemo. I was in good spirits to be out and I had no intention of talking about my medical situation. But somehow, the word surgery came into our conversation. I saw the young woman's face drop. She so innocently asked if I was okay. She wanted to know what was wrong. Her eyes welled up in tears when I told her. She reached for my hand, "You're going to be okay." Then she reached over and hugged me the most non-awkward hug I've ever received from a stranger and added, "I'll pray for you." We both laughed when I had to fan my eyes. Her strong reaction could have been annoying, but her sincerity touched and surprised me.
I've reacted horribly to Codeine in the past, so I'm a little afraid of pain meds. I'd rather hurt a bit than deal with freaky dreams/hallucinations. So when we got home from surgery, I mostly let Heidi and Don ease my pain with their great pampering! I felt good enough to briefly uke it up with Don. Actually, I had planned on some pre-op strumming before surgery. I figured a gentle "Amazing Grace" followed by "Dueling Banjos" would give me just what I needed to make it through the day.
But I ran out of time in the morning. We were off by 8 and our "concert" waited until evening. I'm so jealous of that post-op girl in the photo... showing no signs of pain. I guess that girl was enjoying a little of her lingering anesthesia. I've been a little too sore for uke playing since.
I've never been a fan of big clubs and groups. I enjoy a small group or friends one-on-one... especially now. Today, I tried to join a chat group of women dealing with cancer. It totally stressed me out to see comments and questions and thoughtful remarks lighting up on my phone.
Group texts from family and friends can even overwhelm me, now. I usually love it when my siblings get caught up with a texting thread, sharing photos and jokes. But I'm sitting on the couch. What do I have to add? Photos of my scars?
But I know these grumpy thoughts will pass. Just give me a day and I'll be craving those silly texts, full of news and silliness. And the support groups... I know how important it will be for me to share and learn from others. Just let me gripe today.
Yesterday I was at the hospital from 9 to 6 having my lumpectomy. I'm not complaining about that. I was actually in great spirits to get it done! But for a brief while I had to sit in the waiting room, where women dressed in pink gown tops were awaiting mammograms. I was in a long purple gown... not in the same club. For 20 minutes I listened to these 7 women fret and stew over having to do their mammograms. "What if I need an ultra sound?" and "This is so scary, I've been called back twice." and "I hate mammograms!"
These ladies were not including me, but that's okay, I had my mascot in my hand. My donkey is helping me kick this cancer, I didn't need their support. Then suddenly a wheelchair arrived for me. The room was tiny, so I politely pardoned my way through the lady legs, "Excuse me please. I'm going to go have my breast surgery now." Maybe it was the purple of my gown that made me feel royally rude, like I was the lucky one. But it some how satisfied me to have these ladies jolted by my odd remark.
It's not in my character to be pushy. But the squeaky wheel is the only way sometimes. I knew the doctor's office had my MRI results and I had to call 3 times to make sure I wasn't pushed off to the "call tomorrow" list.
But, I got good news about the MRI (with no surprises) and I got scheduled for a lumpectomy in 2 days! And this little carved donkey amused me as she sat on a nearby desk as I made calls. I think she will be mascot for this thing! She may look a little sad, but she's really just stubborn and calm!
I'm like a 1950's teen waiting by the phone. But I'm not waiting for my date to call, I'm waiting on news of my surgery date. So I'm picking up all calls... and reminding myself why I usually let the machine answer.
I just got a call for Elizabeth, saying they were sending my diabetic packet... or something. I was confused by what I now realize was a clever tactic for finding interested clients. "Well, have a good day." She finally said, "I'm glad you're not diabetic."
The other day I answered a wrong number. Before I could explain that she'd reached a residence, not a school, I heard the phone click. I should have been the one hanging up! I was already on edge, so suddenly I was furious.
But! It's a modern day with caller ID, so I dialed the rude caller back. I of course reached voicemail. I smiled like the Grinch, then decided to leave her a long rambling message about our accidental disconnection and the Houston floods and how are the kids and a final, "God Bless!" at the end. I hope she was totally confused by that.
When Dr. M said it would be 9 months to a year before I would be through with this, I gulped. I'm used to speeding through things. I'm quick. I find short cuts. How could I possibly hang around for a year, when Don and I are on the road about half the days of every month?
I have been waiting 2 weeks to have enough information so that I can stop keeping this stupid secret. I told family right away and then close friends and today I did the Facebook thing. That seemed so lame, but I needed to just have people know and be done with it. It was a huge relief to have the secret out.
Later that night I looked on FB and I wondered, "Why put yourself out there for more torture, Beth?" My status of cancer got me about 38 likes and someone else's birthday flowers got over 100?
But, then I realized... no one wants to like my cancer. And then I started to read. The comments were not repeated, greeting card responses. They were sweet and funny and touching and thoughtful. Each note had the personality of the sender. There were messages from people I don't know at all well, but they were kind and genuine. How did people do this cancer thing in times before texts and emails and yes, even Facebook?
My hair has been looking horrible! For 2 weeks I've kept my calendar clear, hoping I would have surgery right away. And now I wonder why bother with a salon appointment if I might be saying good-bye to my hair?
But, I did it! Today was the first day that I didn't need to be near a phone. I had my hair cut and got rid of a few gray hairs as well! I was as giddy as Lucille Ball buying a new hat. (which I guess I could have just done) I feel like a new person. Yay!
I like to keep moving. I'm not even good at lingering in relaxed settings, like a spa. So when I learned my MRI would be 45 minutes, I tried not to panic. On my stomach, arms over head... squeeze bulb in hand if I needed help. How is this possible?
But I made it though! The medley of jolting sounds almost amused me. The machine gun sounds put me in the scene of a movie. I tried to make up a song to the techno beat that intruded for a while. The rumbling rhythm reminded me of those stupid "Magic Fingers" that vibrated motel beds in the 1960's... and it soothed just about as poorly. Best of all, I kept from squeezing the bulb. I didn't want to risk having to start over!
I really hate being the LAST to be called in the waiting room. But that's what happens when your appointments are squeezed in. So I waited and met my breast surgeon...
This is early in the game, but I am still hearing words I don't understand. I hate feeling ignorant. I haven't exactly dealt with cancer and I am starting from scratch.
But, the good news is I got a call with words that mean nothing to me, but I learned they are good. Some more lab results came in and they show my cancer is Estrogen Receptive Positive.
Mad or sad, which is worse? Actually sad is worse. Today I answered 3 calls telling me I couldn't keep appointments because my insurance didn't clear. I could barely get off the phone without crying.
But, I found out I can turn that misery to anger super fast. Sometimes you have to work up a good rage and rant a bit... just to the kitchen. Then I can be calmer and more empowered for my next phone call.
Cancer to Covid
I started this complaining list/blog, in May 2016. I posted 200 gripes about my breast cancer and then I was done.
On March 17, 2020, I started venting all over again, when another disease (starting with a C) interfered with my life. Only this time, it was affecting more than me.
Coronavirus and Cancer! Both are evil, but neither can totally get me down... if I vent! I hope with Covid, I run out of complaints before 200!