Through the Looking Glass

(The following was originally posted on my Carepages blog for family and friends during my treatment.)

I sat across Tim at lunch today and said, I have nothing to talk about because I’m not doing anything. He disagreed, but the conversation remained muted.

I’ve spent the majority of the past couple of weeks sitting and doing nothing. I’ve watched — actually watched — more sports than I have in my life. Normally, I listen while working on the computer, crocheting, or doing something else. Now I just watch. It doesn’t make me any more of a fan, but I know more of what is going on during the games.

I did have my doctor visit on Monday, May 1, which was anti-climatic. Nothing new to report other than to move forward toward phase two of the treatment. I had chemo number five on May 2. That one was like landing with turbulence. As before, they give several pre-drugs via infusion, but this one had something that left me feeling agitated. They also give a pretty good dose of Benadryl, which made me extremely groggy. I kept dosing off. The other downside of this phase is that the main drug is infused over three-plus hours (slower during the first two), so it makes for a very, very long, slow, day. And since I'm not fully coherent, that makes the day seem to drag all the more. Three more of those to go.

But now I’m in what we could call recovery week of that last treatment. Mostly I find my energy levels to be the biggest thing. (They are pretty much non-existent.) I’ve had a few new side effects, including some nerve issues in the extremities (which they predicted), along with intermittent body aches. I sometimes have leg cramps in the night as well. These seem minor overall but tend to be taxing and frustrating when the mind wants to do things and the body says, “no, we don’t have the energy for that, let’s not. Let’s just sit instead.”

One new experience this week happened when son, Mark, came down with bronchitis. Normally, Mom would be there with flying colors, bringing Gatorade, soup, and other motherly devices. Instead, my role shifted to that of quarantine. Stay away. Don’t go near. (Do you know how hard that is for a mother?!) I’m told Matthew may have a touch of it too. Of course, they are managing. . . but mothers want to be there. Mothers want to make the world right again. Mother’s Day may be more of the same. . . wave at Mom on the other side of the protective glass.

That’s where I’m at for now, just a little flower under protective glass.

The Alien

(The following was originally posted on my Carepages blog for family and friends during my treatment.)

Jamie HairgrowingSometimes I look in the mirror and just feel like an alien. I have no hair. My scalp feels like rubber. My eyes seem to dominate my head. I retain water and feel larger than Jamie. I’m writing this looking at a photo of myself from 2005. I’m not going to be that person ever again. (Not that I could have been anyway.)

Potatoes. . . my body needs them. I have no idea why, but I am complying. This ranges from potato soup to tater tots, french fries to baked potatoes, potato chips and potato pancakes. Potatoes. Yes, please!

Television. . . thank God to its inventor. It does help to pass the time when nothing else is going to happen.

Boredom. What happens when I have no energy to do anything but have enough energy to hate doing nothing.

Anxiety. What happens when my brain is bored and starts getting ideas about the 20,000 things I think I should do but can’t. I wonder who will do them. (No one.) I wonder when they will get done. (Not this week.) I wonder who will care. (Me.)

Sneaks. The things I do when no one is looking, then own up when caught. (See Anxiety.)

makeupDates and Numbers. I can't do them well right now. I thought I was seeing the oncologist last Monday. No, it's this Monday coming. I had to take my new bank card to the bank. I messed up the automated activation. Don't even talk to me about balancing the checkbook.

Sometimes just putting on makeup requires me to sit down after and take a breather. I do it anyway because my mother did. She always did her best to look good no matter what. (Role models.) The makeup doesn’t do much to hide the alien, but the “Better than Sex” mascara and Chocolate Bar* eye shadow make me feel better about myself.

I keep singing the Corona beer commercial, “Take your time, take your time, take your time, no need to hurry. Take it easy, take it easy, take it easy, no need to worry. . . (Hopeton Lewis wrote the actual song.) That’s pretty much where I’m at right now.


*I didn't receive anything to promote these products. The opinions are my own.

Small Frustrations

It’s the small frustrations that drive me the most crazy.

I have learned to accept the bigger things for what they are. I’ve driven the car maybe twice since February. I don’t run up and down the stairs for every little thing. I’ve accepted that doing math and numbers may not be my thing right now. And more. . .

But the little things drive me nuts. Clutter that needs picking up that may sit an extra day or two. Wanting to work on a project, but maybe not having the energy to do so. Things taking more time than normal to do.

Friday we had a family dinner. I wasn't allowed to do much. Instead, I got to watch while everyone else did most of the work. I'm told I still did too much, but it didn't feel like I did anything. We did enjoy some turkey, fixings, and good family time. That's always greatly appreciated. I'd like more of that please!

Yesterday we had the landscaper out to do the weeding and mulching neither Tim nor I can do. I would love to be out there getting my hands dirty, but by the end of the day, I didn’t even have the energy to go look at the work done and sent Tim to walk the yard for the final check. (I had gone twice before, so I did see how it was coming along.) Some days I’m just more tired than others.

Jimi Monster High JamieI did manage to spend time working on my Jimi Hendrix doll this week. Not sure why I took up the task, but it was something I’d wanted to do for awhile after seeing many fabulous customized Monster High dolls online. I had sewed a costume some months ago but never finished the trimmings (buttons, jewelry, etc.). I never took the “me" time to do it. Now he just needs a strap for the guitar son Mark hand painted and he’s also working on a microphone stand for him. Next I need to finish his cohort, Janice Joplin. I made the mistake of wiping off her face makeup, though, and now I’m worried I won’t be able to put it on myself as well as it had been done mechanically. Others do this, so I should be able to. . . but that is a challenge. I had previously made an outfit for her as well, including hand crocheting a little vest she’s often photographed as wearing (along with a big boa). The two dolls will look cute on my shelf.

I have started sewing together the afghan I began a year ago. All the circles are done and now they get stitched together. I finished the first round, then ran out of gas. Round two is quite a bit larger to sew around, so it will take a little more time. It’s really going to look fabulous. It’s dark grey with lots of textured round discs. I had intended on putting it on our bed, but with the long tassels, it may be too much of a cat enticement, so may end up at the cottage instead.

Meantime, I continue to work on the edits for my Transformational Healing book. I’m now working on Section Three (of five). These projects are all things I had put on hold in my life, so I’m glad to see them coming to fruition, frustrations or not.

Tomorrow I go for blood work and a recheck with the oncologist. I’ve made it to the halfway point and things should get better from here on out. I am slated to have some more testing (MRI and CAT) to see where I’m at. Keep praying for those good reports, it’s working.

My Old Self

(The following was originally posted on my Carepages blog for family and friends during my treatment.)

clutch necklaceBack in February, I took off my twelve rings and earrings for my two surgeries. After, I couldn't get them back on. (Water retention) But more than that, they felt too heavy on my hands. My old self decorated her outfits like a Christmas tree, always wearing multiple bracelets, necklaces, maybe a pin or two. And of course, the rings and earrings which I never took off. I explained to Tim, even carrying my purse feels like a chore. I don't want anything heavy on. Heavy being a subjective term.

I did continue to wear my "crutch" necklace. What’s a crutch necklace? Back last summer when I had a lot of issues with anxiety (which seems to have become some 80-90% better post-BC) I read that sufferers often need a crutch. It might be a person or a thing. "As long as I have or am with _____ I'll be fine."

My crutch started out as my stainless essential oil diffuser necklace along with a sterling mermaid Tim bought me in Amsterdam. After Christmas, I added an "I Am Groot" medallion (from Mark, saluting our favorite saying from the movie Guardians of the Galaxy). Later I asked him to make me a second one “Jedi” (Star Wars being core to Matthew and the whole family). Along the way, I've added a few other trinkets (a crystal, a dragon charm, and a breast cancer tiny charm sphere from Tim's mom). So as I trek off for bloodwork or chemo or any of my other adventures, my family goes with me in spirit. It may be a crutch, but it’s also a piece of my heart.

But I started missing my wedding ring. I put it and my anniversary band back on this week along with its opposing mate on my other hand. It feels good having them back on and I may put my earrings back in as well. I'm not ready for all twelve, but a sign that a little bit of my old self is under there someplace is a good thing, I think.
I've gone through a lot of shifts these past few weeks. I’ve shaken off a lot of dust. I feel like the universe is saying it's okay to integrate and knit the old and the new me back together.

PS: I want to add that I am grateful for each and every one of you. Thank you for standing with me and for your encouraging messages (both on and offline). Also for those of you who have also taken my messages to heart and tried new things, I congratulate you for being brave with me. We got this. “We are Groot.” Which for those of you who don’t know, it’s kind of like saying we are an eclectic team who stands together through thick and thin.

PSS: I have now had chemo #4 - the supposed halfway mark. I see the oncologist on May 1st.

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