Monthly Archives: January 2015

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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Needles in my boob, the meaning of positive, and so much damn cancer information

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Didn’t mean to leave anyone hanging, but I’ve spent a ton of time with the kids and B during the holiday break. From Christmas (and so much playing!) to a New Years (kid-free!) getaway with B, it was a great week. In between the fun, I was researching and reading and plotting all the potential scenarios, but as much as possible, I tried to focus on the kids and B. But now I’ve reached the point at which I need to write this out, to get these thoughts and feelings out of my head. As I’ve said before, this blog helps me process, and I’m going to need to process a LOT during this process…

So the update, starting with the Christmas Eve biopsy.

Biopsy

I don’t think I ever want to spend Christmas Eve morning at the breast imaging center again.

The results of my mammogram and ultrasound were suspicious, so the biopsy was the next course of action. Again, not feeling like I had much to fear, I was in good spirits – looking forward to the next day with the family and the start of a week with B.

I changed into a surgical gown and was escorted back to the ultrasound room. The radiologist who would perform the procedure came in. He was really nice, to the point, and very socially awkward (which I appreciate and kind of adore in people). He explained the procedure and looked at the images from my last visit. In a few minutes, I was warned that the local anesthesia would sting a bit. It did, but it wasn’t bad.

A few minutes later, the first incision was made. I watched on the ultrasound as the first mass was found. I could see the radiologist’s needle approaching the mass.

“One. Two. Three,” he counted. Click! I watched as the needle pierced the mass and retracted back. This went on for six or seven times. Count to three. Click sound. Needle in and out. No pain, but I could feel blood dripping down my side.

Then he made a second incision for the next mass. Same procedure, except he forgot to count. “I’m so sorry,” he said with a little under-the-breath laugh. “I forgot to count. Are you okay?”

I assured him I was fine. Since I was watching the whole thing on the monitor, I could see the needle approach and anticipated the click and needle in-out thing. Besides, I couldn’t feel anything with the local anesthesia.

The nurses laughed as I explained that I figured it out and didn’t need the countdown. “Everyone is different,” Nurse Gina said. “Some people ask a ton of questions. Some want to bury their face in a pillow and not look at all.”

The whole thing lasted about an hour. During that time, the nurses, radiologist and I talked about our Christmas plans, recipes for cooking a tenderloin (two of us were making one for dinner the next day), and recipes for our themed holiday drinks. (We would have Cranberry Margarita Martinis, while Nurse Gina was preparing Frozen Grasshoppers.)

When it was over, Nurse Gina applied pressure to the two incisions for about 10 minutes. That was probably the most painful part. It was SERIOUS pressure. Then steri-strips and a gauze/adhesive dressing. The incisions were so small, Nurse Gina had a hard time finding them.

I had to change the dressing a few times that night because I kept bleeding through. It turned a beautiful purple color. (I joked that it matched the dress I was going to wear on New Years.) And there was a lump where the biopsies originated. But there was very little pain.

The worse thing was the flu that I was coming down with and would battle for the next week and a half.

Then waiting… Having B and my mom around, and the kids of course, kept my mind occupied (somewhat), but there was still the WAITING…

Positive Doesn’t Mean “Good”

Friday at 9 a.m., B and my mom were getting ready to leave, after they both spent two nights with the kids and me. My cell phone rang.

“I just got off the phone with the pathologist,” said the socially-awkward radiologist. “It’s positive for breast cancer. Both areas. Wait, sorry. I should have started with asking how you’re feeling since the biopsy…”

I laughed. I’m good, I assured him. Surprised at the results, but the biopsy area was fine.

“I really suspected it was cancer when I saw it,” he said, “but I had to wait for the results to be sure.”

He told me a nurse would call soon to schedule a meeting with a surgeon.

Tears. I walked out of my office and into the kitchen. I looked at my mom and said, “It’s positive.”

She put her arms around me and buried her head in my neck.

“Positive is good, right?” said Ethan, who I didn’t even realize was in the room. Until this point, I hadn’t said anything to the kids.

“Usually, yes,” I said. “But not usually when it comes to medical stuff.”

I explained that I had a test that showed a lump in my breast and had another test to determine what it was. It was the second test that was positive for something and that meant I’d have to see more doctors to find the best way to fix it. That satisfied him and so far, I haven’t said anything else to him.

(I’ve thought a lot about this. Until I have a plan and more information on my particular kind of cancer, talking about it to a kid who’s been through so much would do more harm than good. I really want to be able to say “here’s what’s up, here’s how we fix it, and everything will be okay.” I just don’t have enough information yet to do that.)

About that time, the surgical nurse called. I had already reviewed the surgeon profiles at the cancer center so I knew which surgeon I wanted to see. I had three options: two general surgeons and one breast-only surgeon. I’m going with the breast-only doc. Of course, she’s out of the country until January 12, so things are kind of on hold until then. She’ll be the one to refer me to the oncologist and radiation doc, and order additional testing necessary before surgery.

Information Overload

In the waiting time, I had an “education session” with Nurse Gina. I brought my mom for two reasons: 1) the cancer people kept asking if I had a support system (since I’d been alone during the mammogram and biopsy) and I wasn’t sure they believed that I did have support, and 2) I thought it would help my mom. (It did make her feel more comfortable.)

Most of what Nurse Gina covered, I knew from my hours of research, but there were two points that caused me to cry.

She explained that since I was pre-menopausal and under 50, I would most likely have to endure chemotherapy. As she went over the specifics and side effects of chemo, I couldn’t help but feel sorry for myself. Losing my hair, eyelashes, eyebrows – “fuckity fuck fuck,” was the only thing I could think as tears streamed down my face. As she continued with the services offered in the cancer center – head shaving, wig fitting, scarf tying, eyebrow makeup classes – more tears. Tears because, quite frankly, I can hide all of this from people, but not if I lose hair. Then I’ll get sympathy looks, which I hate. I also teared because it’s so ridiculously vain – and that pissed me off that I could be so damned vain about HAIR… And it cycled back through again.

The second thing that caused me to cry was when she asked if I told the kids yet. I said no, and explained why and what they did know. She gave me information on how to tell kids, which is somewhat helpful, but given our situation, it’s so much more complicated. I just tear whenever someone talks about or I think about how my kids have been affected (and in some cases, messed up) by so many things out of their control. And at such young ages. This is just one more thing for them to worry about.

Nurse Gina was fantastic during the education session. She made my mom feel completely at ease. She sent me home with an inch-thick book and a two-inch binder, plus a ton of pamphlets and brochures on information and resources locally and nationally. I like having as much info as possible, so I’ve already devoured everything except the book (which seems to be a lot of info I’ve found in my research). And last night, I started researching wigs and scarf tying and the god-awful bras and inserts made for women who’ve gone through breast surgeries.

That’s where things stand right now. Stay tuned… there are still a half-dozen topics I want to write about, and will write about, in the coming days/weeks.