Category Archives: Randomness

Shopping for my head

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Today I tried on “head accessories” – scarves (untied and pre-tied), turbans, and sleep caps. There were two other women in the shop, both had been through chemo – one of them preparing for her third time fighting cancer.

The women were super helpful with what I would need and not need. They talked about the importance of super soft materials and showed me what to look for in the placement of the seams in a turban and pre-tied scarf. They shared how to wash and care for these accessories. They showed some tricks for handling an accessorizing the “tails” of the scarves.

We talked about skin care (probably get really dry) and nail care (could lose my nails but I can still paint them using special polishes, albeit with limited color options – I’m going to miss regular manis-pedis).

I bought several things, and I gained quite a bit of confidence in figuring out how to rock this inevitable bald-thing. It was actually kind of fun trying on stuff. I look pretty damn good in a few of the turbans and scarves… Best estimate, I have 7-21 days after my first treatment before I start losing my hair.

I also got the contact information for the wig fitter/cosmetologist. She has limited hours at the hospital retail shop, but she runs a salon not far from my mom’s. I hope to get an appointment with her this week/early next to help me navigate the world of wigs and how to draw (hopefully) natural-looking eyebrows.

Shopping included looking for somewhere to store all the new stuff for my head. Some assembly required, but this ended up perfect.

Shopping included looking for something to store all the new stuff for my head. Some assembly required, but this ended up perfect.

Tomorrow, I have a heart test (some of the chemo meds can damage the heart so I need baseline results so I can be evaluated over the next few months) and the installation of the mediport (to administer the chemo and have blood drawn through this process).

It’ll be a long day.

Fun story: I tried on one of the pre-tied scarves this afternoon to show the kids. Lauren’s reaction: “Why are you the only one who gets to be a pirate? I want one, too!”

MRI fail

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I was supposed to have an MRI today to get a better look at the two masses and make sure there’s nothing hiding in my “dense” breast tissue. I made it one-third of the way through the procedure, then quit.

The appointment was scheduled for 7 a.m. I like being the first appointment. In and out, I thought. Then I can hang out at Panera, get some work done, and get ready to see the oncologist at noon.

The hospital volunteer took me back to the MRI area right away. I was given a locker for my things and a gown and pants to put on. A few minutes later, I was taken into the MRI room.

(Sidenote: I had an MRI before, when I was about 19 years old. It was for my head, after I started having some strange symptoms which were later diagnosed as atypical migraines. I remember the machine being loud and very tiny, but it wasn’t too bad.)

One of the techs started an IV for a contrast solution which would help show the abnormal tissues in my breast. She tried both arms – my veins are deep and not easy to hit the first time. She finally managed to start it and then asked me to turn over and lie on my stomach.

She moved the pillow I was laying on while she started the IV, and there were two holes. “Your breasts go here,” she said, pointing to the holes. “Forehead here,” while pointing to a C-shaped elevated platform. “Arms outstretched like Superman on this pillow above your head.”

It was wildly uncomfortable. There’s an elevation between the pelvis and the holes for the breasts. It felt really unnatural. The forehead platform was only elevated about an inch and a half, so very little clearance between the tip of my nose and the bed of the machine. (Also, Lauren used my makeup brushes to paint with my hair gel, which I didn’t know until my overly sensitive skin developed a wildly red, itchy rash on my cheeks and forehead. The forehead platform hit all the red itchiness in all the wrong places.) Plus, it was completely uncomfortable with my arms straight out in front of me.

She put headphones on me. (“To help you relax, focus on the music,” she said.) And handed me a cord with a rubber ball at the end. Apparently this was my way of contacting the techs if I had an issue.

Once situated, she moved the bed into the tube. Because of my position, I couldn’t see how close the sides and top of the machine were to my body, but it felt small (even though I wasn’t touching the sides, I was very aware that I was in a small tube with no easy way out.)

Image shows similar position to my test, except the machine at my hospital required me to go into the tube headfirst.

Image shows similar position to my test, except the machine at my hospital required me to go into the tube head first. Also, my tech didn’t look as happy as this woman does. (Image from GE Healthcare)

“I need out,” I said. And she moved the bed out and allowed me to sit up. I asked how long the test would take (30 minutes), and it was reiterated that I couldn’t move at all during the test or the films wouldn’t match up and we’d have to start again. She recommended that I focus on the mirror placed below my eyes in the forehead platform. “You can see outside the machine through this mirror. It’ll make you think you’re in the open!” she said. I thought, well, now you just told me that what I’m seeing in the mirror is a lie and I’m not REALLY out of the machine, so that’s not really going to work…

“OK, 30 minutes. I can do this,” I said. “Put me back in there.”

Music started in the headphones. Country, not my favorite and certainly not necessarily relaxing. The voice of the male tech came over the headphones. “This first one will be about 40 seconds.”

Thunk, thunk, thunk. The process of getting the images sounds like a jackhammer. I tried to think about being in a downtown area, watching the construction of a beautiful building.

It was a very long 40 seconds. I think he lied about the time.

“How are you doing? Next one is five minutes.”

I opened my eyes and saw the mirror of lies. I lifted a finger and could see the image in the mirror. It was about then that I realized it was really hot in the machine. And there didn’t seem to be enough oxygen.

“You can do this. It’s ony 30 minutes. Go back to the construction image,” I tried to tell myself.

More noise and a really long five minutes.

“How are you? This next one is about four and a half minutes.”

“OUT!” I yelled.

“I can’t understand you,” said the male tech.

I repeated, louder. And squeezed the panic ball.

He came in the room to the opening by my head. “If you talk too loud I can’t understand you in there. Are you okay?”

“I can’t breathe very well. It’s hot in here.”

He still couldn’t understand me since I was essentially talking to the mirror below me and I was stuck in this tube.

I lifted my head and felt a glorious cool breeze on my cheeks. I realized the cool air felt great and being in this position did not move my breasts. “OK, let’s just get this over with.”

I thought I could go the rest of the time with my head elevated, but after a few minutes of the next round of images, the cool breeze wasn’t that cool anymore. I was starting to sweat, and it was getting really hard to breathe – like there just wasn’t enough oxygen in this tube.

After the four and a half minutes of the next round of images ended, I cried to get out. “I just can’t,” I said as tears rolled down my face. “I need up. I need a drink of water. I need air.”

The female tech came back in the room and disconnected the IV and helped me sit up. She gave me a Dixie cup of water and a tissue, and she rubbed my back. “This happens a lot,” she said. “We can’t put you totally under for this procedure since you have to lie on your belly, but you can see your doctor for a Valium or something to take the edge off.”

My hands were shaking and I felt weak – physically and mentally weak for not being able to get through this. Both techs assured me that this was one of the hardest MRI tests because of how the body is contorted.

I just wanted to get dressed and leave.

I called my mom and B when I left, and they both made me feel more calm. Writing this is making me calmer. I finally stopped shaking, and my heart isn’t racing anymore. I’m killing time until my oncology appointment at Panera (one of my happy places), enjoying a mocha, and eating a cinnamon bagel. I figure I deserve it.

On the positive side, there was one option (lumpectomy, maybe?) that would have involved undergoing an MRI annually to supplement the yearly mammogram. Yeah, that’s not happening, so my surgical options are sorting themselves out.

EDITED TO ADD: How badly did I want out of the hospital this morning? Two hours after getting dressed post-MRI fail, and I just discovered my pants were on inside out.

A note to my IRL friends – and a few requests

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NOTE: I’ve purposely kept this blog very hush-hush. Heck, I just told my mom last week that I have a blog, but I didn’t share the URL. I just don’t want to feel restricted or edited in what I say or how I say it. BUT there are a handful of people in my real life with whom I HAVE shared this URL (and I know a few of you have shared it with mutual friends, too. That’s okay.) This post is written for you. And for those of you I haven’t had the pleasure of meeting IRL (yet), please see my requests at the end of this post – many of us have been on the widow/solo parenting journey together for a while, and I’d love to hear from you too.

Hey, friend. What’s up? From Facebook and Instagram, looks like you had a great holiday. Yay! I’m still on break – classes don’t start until the 26th. Woo-hoo, the life of a college instructor!

Seriously, most of you have been on this journey with me from the time of Mike’s death. This blog has been my way of keeping you in the loop with how I’m doing, what I’m feeling, what’s going on with me. And hell, you know me pretty darned well. And you know that if you call me, no matter what’s going on, I’ll probably say, “I’m great. Kids are good. Mom’s good. How are YOU?” I’ll immediately deflect to talk back to YOU because I really hate talking about myself.

But I’ll write it. This blog is like opening my brain and letting you all in. It’s real. Sometimes raw. But always authentic.

You’re probably up-to-date on what’s going on with my boob. Yeah, I know you’ve been reading because you’ve called or texted or emailed or messaged me (or, ahem, perhaps you’ve messaged someone else to get the skinny?? I’m on to you, you-know-who. OK, I don’t know specifically WHO you are, but I have my suspicions.).

You have NO idea how much it means to hear from you. I’ve read every message and text and listened to voicemails over and over. Thank you for caring so much. I love you. You’re kindness makes me cry. Happy tears. Tears of love.

And I suck as a friend because I haven’t responded to your outreach. You took the time to reach out. You want to talk, and I’ve been silent. Sorry, not sorry. It’s still hard to talk about this (completely unplanned) journey. I don’t know what to say in words that come out of my mouth. Words that come off my fingertips, sure, but it’s hard to SAY the words out loud right now.

Look, you know me. You know that I don’t want you to feel sorry for me or for you to feel bad for me or to hear “you’ve been through so much already.” It is what it is, you know? Cancer’s here, and now I have to deal with it. Sucks? Yes. But there’s only one thing to do: win.

I’ve thought a lot about this, and there are some positives:

  1. I get new boobs. Yep, 40+ years of these puppies and gravity is winning. But not for long. Whether I decide to go for a conserving surgery or just have it completely removed, I’ll have new breasts. Insurance pays for them to look symmetrical, so the left one won’t be left out – it’ll get a lift (at minimum).
  2. New boobs might come with a tummy tuck. If I opt for a mastectomy with flap reconstruction, the fat and tissue from my abdomen will become my new boobs, and my stomach ends up “tucked.” I never liked how my c-section scar healed, and this might be the time to get all that fixed up.
  3. I get new hair. Yes, I am still a little emotional about the curls, but I’m getting over it after looking at my wig options. However, I haven’t seen my natural hair color since 1992. Who knows what will happen when it grows back! Will I be blonde? A ginger? A true brunette? My hair was naturally all these at different points of my life, until college when I started coloring it. Only time will tell what’s really going on with the follicles. But until then, I get to add hats and scarves and wigs to my wardrobe – and I don’t have to feel bad about buying these accessories. My head must stay warm, you know.

So there. No reason to feel sorry for the diagnosis. I get new boobs and hair! Woot! And you’re all invited to see both and celebrate with me (with a lot of wine) when this is over. (Well, probably not see-see the boobs. That might be weird.)

But, I know you want to DO something. If there’s one thing I’ve learned through the grief process, it’s that people want to help. So I’ve been thinking about that – how you can support me from wherever you are. Three things:

  1. Obviously prayers are very much appreciated and needed. Pray for me, for the kids, for my mom, for B, for my doctors. We’ll take all the good thoughts we can get!
  2. Keep calling, messaging, texting, reaching out. I might not respond, but I REALLY appreciate you and your messages. I need to hear your encouragement. It helps so much to know you care. Thank you.
  3. I need a playlist. Whether it’s sitting in waiting rooms or waiting during chemo treatments, I need some good, upbeat music. Consider it a way for you to hug me – I’ll think of you when I hear the songs and feel the love and good vibes you’re sending my way. I have some thoughts on how this might work, if someone wants to spearhead this. OR, just leave your musical suggestions in the comments below.

Much thanks to all of you. Much love to each of you. XO

-Jax

 

Surgical consult and what’s known about my cancer

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I’d never turned left at the intersection. Turn right to the kids’ pediatrician. Turn right to the ER. Turn right to the breast health center. But I never had a reason to turn left. Until today. Left is a one way to the cancer center. Oh, and the hospice. I’m not a fan of that combo.

It sucks that I had to turn left today for a surgical consult.

I walked into the cancer center and found I was the youngest by at least 20 years. Everyone wore hats, presumably because of hair loss from treatments. Everyone seemed to be WAY into Kelly Ripa on the TV. Everyone seemed to know each other.

I sat as far away from everyone as possible to fill out my new patient paperwork. I looked behind me, though the window, into the “wellness center.” It wasn’t so much a “wellness center” as it was a wig/scarf/hat shop. I bet I’ll be spending some time there, I thought. I’m going to be spending a lot of time in this waiting room.

I was escorted back by the surgery nurse who took my vitals (all completely healthy/normal) and started the assessment. Did I need any assistance with walking, showering, getting around? Could I handle my personal hygiene? Did I have any financial, emotional, transportation, spiritual needs? Any pain or tenderness?

I changed into a gown, opening in front, naked from waist up. And I waited. And I started to sweat.

I was just sitting, but my armpits were wet with sweat. And so was the underboob area. It was gross, especially because I didn’t wear deodorant this morning, unsure if I’d have any tests (aluminum can affect some tests). Just nerves, I guess, but I felt pretty comfortable. Just sweaty and stinky and gross.

The breast surgeon came in. She immediately put me at ease. She’s young, maybe around my age, and had an excellent manner. Not over explaining, not assuming I’m an idiot. She made notes as we talked, drew pictures of everything, and let me have her notes.

Bottom line: the clinical assessment (“clinical” because it’s a guesstimate until surgery can confirm these details): invasive ductal carcinoma, grade 3, stage IIA, triple negative.

Basically, cancer cells started in the breast’s milk ducts and have started to grow outside the ducts (that’s the “invasive” part). Grade 3, which has to do with the growth of the cells (scale from 1-3, with 3 being aggressive, meaning it will continue to grow if not treated). Stage IIA evaluated by the tumors’ sizes, and there’s no indication of cancer spreading to my lymph nodes. Triple negative meaning I’ve tested negative for cancer being fed by estrogen, progesterone, or HER2.

Good news? Invasive ductal carcinoma is the most common form of breast cancer. Stage II is considered early detection and has an excellent treatment success rate. And triple negative cancers respond well to chemo, so my treatment will most likely start with there. Chemo could shrink the tumors and doing it before surgery gives the docs an idea of how the masses are responding (or not responding) to treatment.

We talked about options with surgery. Even though there are two masses, I could (probably) have breast tissue conservation surgery (lumpectomy with radiation), which would mean breast reduction as the reconstruction method (including a lift and reduction on the “good” boob). Or I could go with a mastectomy with a flap reconstruction. This means the doc would take muscle, tissue, and fat from my abdomen and use it to reconstruct the breast. The flap results in a tummy tuck (!) and a more natural looking breast than implants.

My week is quickly filling up with appointments: oncologist on Thursday, MRI (for more visual clarification of the area) on Thursday, genetic testing on Friday.

Whew! Good thing classes don’t start for a couple of weeks. (Shit, I still need to write syllabi for this semester and do my self-evaluation in between appointments… Oh, and I had to email the dean today. More on that later.)

IMG_4573First visit to the cancer center. Free knit hats! Sexy hospital gowns! Interactive boob! And my tumors.

IMG_4564I couldn’t figure out this exam table (or is it a chair?), so I refused to sit on it.

Curls

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I can handle the thought of cancer and surgery and months of treatments, but hot diggity! I completely lose it when I think about losing my hair.

For the last 41 years, I’ve had a love-hate-love relationship with my hair. I’ve been known to cry and scream when I get bad haircuts, and to drive more than two hours to visit a favorite stylist. I was a runner-up for the “best hair” superlative in college. When budgeting, there’s one item that can’t be sacrificed: my hair expenses (cut every four weeks, color every eight weeks. Plus there’s the shampoos, conditioners, leave in conditioners, curl enhancers, creams/gels/mousses, hairsprays, and anti-frizz agents – all of which change seasonally).

I spent a good part of my childhood straightening the curls. I hated how my hair both made me stand out from everyone else AND made me obviously part of my mom’s family (in which everyone has curly hair). Around mid-high school, I just went with it. I embraced my naturally curly hair. It’s a big part of me. My curls are sometimes wild, sometimes sassy, sometimes really big. But it’s never boring.

It’s also apparently pretty memorable. I get more comments and compliments on my hair than anything else. This summer, while at a concert, a girl walked up to me and told her boyfriend that they were obviously in the right line for the bus home because she remembered my HAIR – not me, not my friend, nope. This super drunk chick remembered MY HAIR.

And I could (will?) lose it soon.

My hair will grow back, I know that. But it could grow back DIFFERENTLY. I don’t know how to handle anything other than super-high-maintenance curls. What if it’s straight or half curly/half straight? What if it’s a different color? OMG, what if it’s my natural dirty ashy blonde? There’s a reason it’s been 20 years since I started dying my hair.

I really dislike how much the idea of losing my hair affects me. I hate the thought of losing my hair, but I hate the thought of CARING about it so much, too. It’s so damn vain to focus on something so darn trivial, like hair. I’ve looked at the “cancer wigs” and there’s nothing even close to my hair, which makes me sad that I won’t look like “me” when I’m going thought this. I really like to think of myself as not the vain-type. But apparently I am. At least when it comes to my hair.

As a child, I straightened my hair, rejecting the curls completely. I also liked to wear wool blazers.

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That’s me, standing in the back. The one who looks like a boy, according to Ethan. This was around early high school years, so yay for the 80s!

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More recently, I’m all about my curls. Two photos from the last six months:

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