Even though I've been shouting, "I want to start this chemo!' I'm actually feeling more jittery tonight, before chemo, than I was the night before surgery. Surgery was all about getting that tumor out of me! Yay! But there are so many more unknowns with chemo.
I talked with both my kids who wanted to know how I was feeling about all this. Yesterday, I talked to Heidi about the hair loss and wondering about having no eyebrows or lashes... blah, blah, blah. But she was upbeat about buying good make up for a change. She could even come help me have some fun with it.
I talked to my son, Scott last night. First we talked about lots of stuff in his hectic life in DC right now, but then he got thoughtful about my day tomorrow. I said I felt positive, but a little stressed about the unknowns. What will MY symptoms be? Bone pain, nausea... ? Scott reminded me about how he used to be the night before first days of school and how I had to remind him that those jitters were normal. "It's all that wondering that makes you anxious." I would remind him. Once you're there in school or even the new job, you finally get to find out what it's all about... good and bad. And it's a huge relief.
So Scott had to remind me that I was like he was, before starting school or jobs. And soon I would find out and I would feel that relief of just knowing! And probably much of the stuff that is worrying my won't even happen! I love having kids who can teach and support me!
Then I had to tell Scott, "Oh I am taking my tiny wooden donkey tomorrow!" It's my silly mascot for helping me "kick cancer's butt". He laughed and answered. "Just like my sabertooth tiger!" Scott was only 2 when he had thumb surgery and we couldn't find his favorite plastic toy to take along for comfort. Grandma had to buy him a new one, in St.Louis... since you can't just find one anywhere. Then she raced to Tulsa to get it to him before surgery.
I need to find a picture of that boy and his sabertooth!
I've been trying to eat well since my diagnosis. Flaxseed and blueberries! There are endless foods that really can help me prevent recurrence! But now that I know I start chemo in 2 days, I'm scared about what I will be able to eat and what I'll want to eat and if I'll even be able to keep anything down. I've been told by some caring friends, to eat what I want, right now!
So I have years ahead of good eating. And I have 2 days before chemo. So I've made sure to squeeze in a few things that I'm not so sure about later... like Mexican food!
Sweet Cheryl met me for lunch. She was patient waiting for me, since I went to the wrong local Mexican restaurant... which also starts with "L". (I told her it must have been my pre-chemo brain) We even had margaritas, which is exciting since I've tried to stick with red wine, lately. We talked about lots of things, including our moms. Cheryl and I met when our moms were roommates 8 years ago. Our mother's had Alzheimer's but they were fun and feisty and decorated their room with an Obama poster. Cheers to our moms!
It's good that I have choices. Nobody is making me do anything. I don't have to do chemo, even. I can decide. But sometimes I want to have someone just tell me what to do from start to finish. Even before starting treatment, I'm feeling wishy washy about decisions of any kind. Do I want to take the drug Nuelasta when I've heard about bone pain? Do I want to wear sweatpants or something nicer to my first chemo?
Then we have the scarf option! And I remembered how Don and I wore matching scarves at Big Bend National Park to keep the swarming bugs off our heads. Hey, we can be twins, again. Don could either buy a wig with me, or we could get matching scarves.
And here's one more idea!
I may not look sexy, but they make me giddy and happy! Thanks, Lorie!!
I've never been gracious about accepting compliments. But I'm better about avoiding this kind of response, "Oh, this old thing? I've had it for years. I bought it at Target." But what do you say when the nurse says you have beautiful veins? That means I have hideous, prominent veins, which are good for needles. That is not a pretty thing, but it's a good thing, because it also means I don't have to get a port in place for chemo. Yay! for my veins.
Right after getting that fine compliment I checked with Michelle at the desk about my next appointment. She looked up at me and smiled, "Girl, you have beautiful eyes!" I grinned back. "Oh thanks! I was just told I have beautiful veins, too!" Which I guess shows I haven't come too far in graciously accepting compliments. But Michelle got it and moved on to schedule me... calling me Elizabeth. I told her, "You can call me Beth." (If I'm going to be coming regularly, they might as well call me by my preferred name.) "Oh?" She seemed surprised. "Paige calls me Beth!" I laughed over to Paige who was on the phone nearby. Paige picked up on my preferred name a week ago when she got my voice mail. "Really!" Michelle teased "Well, here you go Sweetie... I mean Beth." "Sweetie Beth works, too!" I laughed. Michelle and Paige both crack me up and I'm going to like seeing them when I come.
But I'm going to have to learn how to handle future compliments that might be forced. "Oh, you don't look bad at all!" Hmmm. We'll see.
Well, I'm finally feeling pretty normal, 5 weeks post surgery! I'm able to swim laps and it feels good! It took so much longer than expected and I suddenly want to plant flowers and clean closets. I'm home after all.
But I'm still waiting to hear what day I start chemo. I've called the oncologist's office repeatedly to hound them. "You haven't gotten the okay from my insurance, yet?" I've slipped through the cracks before. I feel like my file gets buried because I'm sort of low priority, compared to many. But I'm eager to know the plan and get moving. I study the calendar and see my treatments edging closer to the holidays. I thought I would be done by then. "I just want to do this chemo!" I half laughed to the nurse on the phone.
Then I realized this is my good window. I'm feeling pretty healed. My brain is alert. (what is chemo brain anyway?) I have energy and hair. I may not know which day I start up with this drama, but I need to enjoy this healthy, post surgery time and stop fretting over WHEN I start. I need to get out now and make use!
When it comes to fashion I'm pretty clueless. I don't like making decisions at clothing stores or in my closet. So how would I handle buying a wig? Especially since it could be an emotional thing. But Lorrie and Shari were determined to make this fun. (Plus they have much better fashion sense!) We arrived at a salon called Care & Co. The mother/daughter owners are cancer survivors and offer much more than wigs. Best of all, there were no bars on the windows! Do you have any idea how many wig shops look like pawn shops?
But Francesca worked with me like a pro. Her sister Sasha couldn't keep herself from intruding, with great advice and tips and opinions. I craved all the attention and suggestions and I filled my brain with info for 2 hours. Some was wig info, but a lot was just talk, about cancer. This could have been overwhelming, but hearing this stuff from an upbeat cancer survivor was refreshing.
We started to have fun. I tried on styles that weren't me at all, but why not? I had names for most wigs. Well, actually I didn't have a name for this one, but I felt like a Sassy Soccer Mom. And how about that silly poof in the rear! Actually, I learned that there are so many options for thinning and cutting and layering all these styles, later. What you see, does not have to mean what you get.
I was pretty sure this cut made me look like Jane Fonda in her 1980's work out video. I needed a headband. But after a study in the mirror, I think it was Jane Pauley, on one of her news shows. Both are beautiful women... but not me.
We laughed and carried on, but we really were absorbing and debating and learning. These were not silly costume wigs and I was making an important decision. But I had to find some humor along the way, or I would have been miserable.
I made Shari and Lorrie try on hats, to join me in a photo op. I kind of liked the green "flapper cap" as I called it. There's actually a half wig underneath. Who would have known you could get a half wig? The cap-less photo shows a similar wig to the one I'm ordering. I had to laugh when I saw the photo, because I'm wearing a wig, with some bangs in my face. That is so me! There are so many photos of me from childhood days, with hair in my face.
So the big reveal will be later. I have ordered one that combines these looks. I might need those eyelashes, too! The main thing is, I am greatly relieved to have this outing behind me. L & S made this serious job, fun. We learned lots and laughed hard. But when those 2 handed over a very festive, "chemo survival kit" that they had purchased behind my back, I was caught by surprise. Lorrie had to go fetch me some Kleenex from the bathroom to dab my eyes. Then we 3 were sort of laughing and tearing up together, so I grabbed my wad of tissue to share... "What? You brought me toilet paper!" I laughed as I tore off sections for my friends.
We kids teased my mom horribly in 1969, when she returned from a shopping trip with a wig. I hope my kids are nicer when they see me in one!
Yesterday, my friends Lorrie and Shari encouraged me to go on a wig outing. I didn't even have my first chemo appointment set. And it was just a week ago, that my head was spinning to learn I was indeed going to need chemo. But they were right, it was the time.
Oddly enough, that same morning, my friend Kim texted me from Oklahoma. She'd heard about a salon in my area and encouraged me to go. "It's owned by a mother/daughter team... both cancer survivors!" It happened to be the place where I had the appointment. And then, Martha from Denver messaged me with some totally crazy wig photos, which put me in a fun goofy mood. And my sister, Jennifer phoned days earlier, saying she'd hop on a plane to be with me when it came to head shaving time. I felt surrounded by support before heading out the door.
But as I headed out the door, it did feel a little creepy. I was going wig shopping and I don't even like clothes shopping! But hey, maybe I could end up with better hair! After all, I've spent a lot of time sporting some crazy hair... like you can see in this old photo! So I could end up with hair that doesn't hang in my face. And unlike this photo, I do at least have a mouth full of teeth!
I don't have the greatest hair in the world, but I still dread losing it. I haven't even started chemo, but I'm planning a wig shopping spree with friends. Today when I tediously blew my hair dry, I noticed my gray roots and thought, "Yay, I'll be losing you. And I won't have to pay for salon appointments for a long time. And I won't have to shampoo and dry and mess with this hair."
I'm not brave enough to go bald. A wig seems silly, but I'll look into it. And if I don't like what I find, I'll go to Party City and buy 30 Halloween wigs. Or I'll wear the pink swim cap I bought for a joke 2 years ago.
There are some good ones, like my Book Club. But mostly I'm not a club joiner. I'd rather not be a part of a big group with rules and expectations. Well, as I stated in the last post I am joining a group that I didn't choose to join. The date that I officially join the Chemo Club is not set yet. (Waiting for insurance to clear) But it will be a big group. And there will be lots of rules.
My reaction to the news that I would need chemo wasn't unusual. I felt a wave of worry and a lump in my throat. My earlier pathology had gotten my hopes up and I hadn't allowed myself to really fret over the possibility. I kept calm while the doctor and assistants were in the room. I asked questions and felt in charge. But when Don and I drove home I allowed a little of my gloom to fill the car. I knew I had already joined the Cancer Club, but I was becoming a higher ranking member. Now I have to be one of those people who decides whether to wear a wig or a hat. I'll be one of those people who has to revolve their life around treatments.... finding foods they can tolerate... dealing with life, despite having all the energy zapped out of them.
But the day I learned the news, a very tiny part of me thought, "Okay, now I am in the real Club. I'm getting the whole experience." I thought of friends who have already dealt with chemo and I felt bonded to them. I knew I would get support from them and be able to offer it to others later.
And I laughed later, with my son on the phone. "Skipping chemo is like having a baby without labor pains." He actually got my silly comparison. I told him how I reacted nearly 30 years ago, when my doctor told me I needed to schedule a C-section, because labor could be a problem with my pregnancy. I was devastated. "How can I be a part of this birth experience without having a single labor pain?" So in a funny way, I'm ready to take on this whole experience. I didn't get to join the Labor & Birth Club, but I will be a part of the C+C Club.
Cancer Plus Chemo equals... seeing grandkids someday?
I'm like most, since I don't like tests. Sometimes you can opt out of them, like I did in high school Humanities. Reciting poems and performing scenes got me out of a few quizzes, at least. But I haven't been able to avoid all the tests that have been needed with this cancer stuff. Waiting for results is like waiting for a test that I never got to study for.
I wasn't a bad student, but I was always anxious when the teacher passed out graded tests. I loved the feeling of relief when I saw a good grade and knew my worry had been for nothing. I've relived that "whew!" feeling a couple times in the past 2 months. When the biopsy results told me my cancer was Estrogen positive, my doctor/teacher explained how that was a good thing. After surgery I was given more grades/results and I felt a wave of relief to learn, my lymph nodes passed the test and my margins were clear! And then after a few more weeks there were pathology scores that made me feel like a winner again. "Your tumor wasn't actually 2.2 cm, it was 1.7! You are stage 1 not stage 2." I nailed it! Maybe it was my 2 weeks of healthy eating before surgery!
And then Don and I sat down with the oncologist on Friday and he went over the scores from the Oncotype DX test. I was hoping to hear that I had once again been a good student/patient and I could skip chemo. But my score of 28 put me in an iffy area. Plus, some other scores had shifted. Most significantly, my clear lymph nodes. One was not exactly clean. Oops. I bragged that I was stage 1 and now I'm really 2A or something. I hate scores and numbers and tests.
But I'm joining the Chemo-Club. And there are some very good people in that club.
I love to read, but my attention span is a mess. I read pages before noticing I haven't comprehended one word. In the first "week of worry" the fabulous friends in my Book Club gave me a goody basket which included magazines. Even my bookie friends knew I was better off flipping through colorful pages than absorbing real words.
But as time passed, I was less scared by the book with the title "How Not to Die" and I didn't roll my eyes as "Peace, Love & Healing". I still had my Kindle books at the ready, but I was ready to open up to the subjects I had wanted to ignore.
I miss packing up my story-quilt, books and puppets and heading to the Women's Shelter. Entertaining the kids, is as fun for me, as them. But even 2 weeks after surgery, I wasn't up for doing a real program. So, I just grabbed my puppet and headed over for just a visit.
When I arrived, I didn't recognize any of the kids since it had been a while. They were mostly little ones, curious and energetic and incredibly delighted to sing to the puppet. I had a doctor's appointment later and I hadn't planned on staying long. But their giggles were addicting. We sat down on the colorful floor and it seemed like sitting on the quilt, playing games and singing about all the planets and stars and colors that were printed on the carpet.
I drove home feeling surrounded by the warmth of those kids. I kept wondering about my treatment plan, hoping it involved no chemo... which would keep me away from these kids a long time. Then my focus shifted to the small houses I passed. Many were worn, with cluttered, dirt yards and others were decorated proudly. I wondered how many of the families in these homes were dealing with cancer, while juggling jobs and daycare and financial worries. It was sobering.
At one point I slowed down and grinned, when I spotted 2 children splashing in a metal tub. Grandpa watched from a chair nearby as the kids hosed each other and squealed. I just had to turn the car around. The grandpa didn't act like it was a bit odd that I stepped out of my car to tell him how delighted I was to see the kids having fun. We both laughed about our now grown kids, once playing with the hose on summer days. He admitted it was a lot more fun playing grandpa than dad. He had been too busy to enjoy watching his kids back when he was working. He smiled and added, "This wears them out good, too!"
Grandpa said it was fine to take a photo. The kids obviously were happy to share their fun. I drove away feeling energized by so many sweet little faces.
This is pretty low on my frustration list, but it counts. The day I got my diagnosis, we started canceling reservations for the Colorado trip, scheduled for 3 days later There were too many worries to fret over the July Trip to D.C. And I didn't even think about the October trip planned until my surgeon said, "If you do chemo and radiation, you will be tied up for 9 months to a year." That was tough to hear.
But then I started thinking about all the great trips Don and I have had in recent years. We've explored tiny, curious places and also the well known, grand ones! In fact we've traveled so much, sometimes I feel like I don't have time to digest one trip before we're off on another. "We've got to do this while we both are equally driven and both healthy!" We've reminded ourselves.
So with time at home, I've suddenly found some time to enjoy those past travels! I've killed some time blogging and I've organized photos and re-lived a few trips. I love the "live in the moment" feel of traveling. But there is nothing more satisfying to me than revisiting those memories through photos!
(No, not a photo of flight to D.C. It's the only plane pic I have stored in my computer!)
I've already complained about frustrating communication issues with doctor's offices, labs, insurance companies, etc. I would be much further in this process if there hadn't been so many archaic games of phone tag with messages slipping through cracks. It's 2016 after all. Seems we should have this communication thing down.
But, I am relieved with how things are working now. My doctors communicate with each other about my care. Modern technology and communication is finally evident. But recently, I've step back in time and I'm enjoying the old fashioned world of snail mail. It's been a treat to get something besides a bill in the mail and I've had the time to write a note or two myself. The walk to the "group mailbox" around the corner is an outing for me now. So that's why I'm extra frustrated that the postal service is letting me down at the moment.
After 4 days of of finding the box empty, I asked a neighbor who said she'd received no mail either. It was Saturday and I tracked down the mail truck in the next neighborhood, where the carrier was filling a box. I asked if she'd been to my box and she said she had, but she couldn't open the back door of our box to distribute mail. What? All she could offer was, "I guess they haven't gotten the door fixed yet." And then I thought of the bill payments and cards I'd put in the out-going slot for days. They weren't going anywhere.
I stomped back in the house. We have had the most ridiculous bad luck with our postal service in past years. Everyone has. Postmaster confrontations don't help, either. And then I thought, I am absolutely more in control of my cancer than I am the Postal Service. How darn cool is that. No amount of healthy eating and exercise and positive outlook will make my mail come faster. I'm going to go back to doing all I can to be healthy again! I have better things to do, than fight the USPS.
In past years Don and I have put on blinders to avoid seeing all the repairs and updating chores that are needed, on our 20-year-old house. We've taken trips instead. But if I'd known I was going to be spending so much time at home, staring at that annoying crack in the paint or this worn carpet, maybe I would have done something earlier... so I could enjoy this home, that I actually really do care about.
So I did one wise and silly thing during those weeks I waited before surgery. I dragged out some of the fun stuff. I set up a "beach table" near the couch where I've spent a lot of time. And then I added a few July 4th goodies during that first week, while taking it easy. The paint and repairs can come later. This is all I need now!
I was warned early on by an MD Anderson "nurse navigator". She told me to get good filtering earplugs, for all the info I would receive from friends and strangers. "Don't let it frustrate you. Remember people share, because they are trying to help."
I tried to remember her advice when I sat in the waiting room, before meeting my oncologist for the first time. Don and I chatted together and felt fairly at ease. But the woman, wearing a wig across from us kept smiling over. A couple of times, her cell phone flashed and she appeared to be taking pictures me. (For her scrapbook of chemo friends?) Then she intruded with a mothering smile. "First time?" "Yes." "You'll be just fine." She insisted. Then she and her husband began telling the story of when she and the family gathered around to cut off all her hair. "It was the only time I cried." She just couldn't stop smiling. "It starts falling out after 14 days..."
I remembered the nurse and I wasn't annoyed. But if it had been a touchy day, I might have had to let her know, "You're freaking me out!"
But I met Dr. P and he was absolutely wonderful. He used a dry erase board to explain things. He encouraged me to take my time, when I had to hunt for my glasses to take notes. He was hopeful, that my lab scores could put me at a low recurrence rate and I might not need chemo. But he also made me feel at ease knowing if I do, he will be there along the way. The sweet woman tried to ease my worries. But the doctor did a better job.
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!