Creatures of Habit

Lately I have been craving routine. Not just planning my days, but routines that become part of my daily existence — almost rituals — that transition me to different parts of my day. I’m not sure if this is an age thing, or if its something we all are drawn to, but it’s funny to me since I’ve never been very good at maintaining habits.

I have a list of daily habits that I am trying to adopt that includes a morning and evening routine. Another habit I’m developing is called “Big Rocks” — comprised of reading the daily Bible text; reading at least one chapter in the Bible; and some sort of personal spiritual study. My goal is that between my morning routine (showering, brushing my teeth, washing up with a three-step regimen, taking my pills, getting dressed and putting on makeup) and my big rocks routine, I’ll be more awake physically and mentally; more ready for the day.

My evening routine includes washing up, brushing my teeth, applying lash serum (my lashes haven’t been right since my first chemo experience when I lost them), taking evening pills, and drinking Sleepy Time tea (I love the Celestial Seasonings one). Again, I hope this ritual will signal that it’s time to relax my body and mind and get ready for sleep. This is especially important with Daylight Saving Time upon us. It’s really been messing with my sleep.

The trick is establishing these routines so that they are habits, so that they accomplish what I want. All too often I allow distractions to get in my way. For instance, I’ve not been making time for my big rocks in the morning, and by the time we are finished with school (and errands on some days), I’m so exhausted I can’t focus anymore. So my big rocks haven’t been completed the last several days. This morning I got closer, but I still need to finish my personal study rock. Hopefully I’ll find some time while the Kiddo is doing school work that I can complete that (like I could be doing right now instead of writing my blog).

Tell me, friends, what tips do you have to create different habits? As a planner, my foremost way is to write it down in my planner. I also set reminders for some things in my phone. However, these have only been partly successful, so I’m wondering what works for you.

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Life Beyond Cancer?

This post has been months in the making. It has been rolling around in my brain — in my conscious and subconscious — but I’ve had difficulty converting it to coherent thoughts and words. This is my sixth attempt.

Here are facts I can state. I developed Lymphedema in my left arm. It presented at first with purple skin, and then the arm became slightly swollen. We ruled out a blood clot before determining that it was indeed lymphedema. Treatment involved wrapping the arm in about five layers of cotton, foam, and bandages for three weeks. Now I wear a compression sleeve and gauntlet (covering the wrist, thumb, and palm; but no fingers). I am still supposed to wrap it overnight. We will see how that goes.

I am waiting to find out when and where I will have my next surgery. Being on Medicaid limits my options as far as surgeons go. I may need to travel anywhere from one to six hours to find a doctor who will work with me. I am hoping to qualify for the DIEP FLAP procedure. It is a long and complicated surgery; hence the reluctance of many surgeons to work with Medicaid. Medicaid just doesn’t pay well.

I turn 40 tomorrow.

Those are the facts I can relate. After that, things get swirly and blurred. This cancer-free life is not at all what I expected, and my emotions ebb and flow like a stormy sea. It doesn’t help that tomorrow is an age-related milestone.

The lyrics to this song have been on repeat in my head lately. Some days I feel others’ pain intensely, to the point of tears. But when it comes to me, I flatline. Nothing. No joy or  melancholy. No frustration or contentment. Just a big empty space. It’s like I am hollow; that if you really look into my eyes you’ll see resignation, exhaustion, or maybe nothing at all.

Trust me, I know that I am still recovering from the physical trauma of cancer treatment. My energy is building, but it isn’t great — and it may never get better. Side effects, like lymphedema and infertility are realities that will not go away. Other effects, like early menopause are physically and mentally exhausting. But these are realities that I can learn to live with.

What people in the cancer community don’t really talk about, though, is post-cancer depression. Some studies say that as many as 25% of cancer survivors suffer from low mood and/or depression. In fact, some experts compare these weeks, months, even years with grief. Not in the sense that the survivor is mourning the end of cancer treatment; but feelings of anxiety, anger, and sadness sometimes flood the brain after hearing the “all-clear.”

For instance, turning 40. On the one hand, I look at what I have accomplished in my 30s. I became a mother (technically I was 29, but it took until I was 30 to really get into a routine). I became a business owner (we’re about to celebrate our 10th anniversary). I grew spiritually, celebrated anniversaries (17 years and counting!), and watched my son navigate his way through the early school years.

On the other hand, I look at the hardships and difficulties from the last 10 years. I had a miscarriage. My Psoriatic Arthritis came back (it went into remission during pregnancy and the first few years of his life) with a vengeance. I had allergic reactions due to medications, and a stay in the Psych ward from a medically-induced manic state. I had three surgeries. A death in the family. I lost my best friend, and I nearly ruined my relationship with my parents.

I GOT CANCER.

Forty is just an age. It’s still closer to one than to a hundred. It’s also even more time for the cancer to return. That’s what think of on bad days. Some days, these lyrics could be about me (not romantically, of course).

The frustrating thing about chemotherapy is the longer-term side effects. The memory impairment. The lack of concentration. These last months, years, or never go away. So it takes an immense amount of energy to focus, to be motivated, to care about things.

I used to love adult coloring to relieve my stress and to make me feel better. Now the thought of starting a page is so overwhelming that I haven’t tried in more than a year. Trying to pick which color pencil to start with is a monumental task.

While I was going through chemo, I took great pride in doing my makeup, choosing my outfit, and making myself as “pretty” as possible. These days, I don’t even want to shower. And I won’t go into the impact cancer — breast cancer — has on one’s self image.

Fortunately, I am quite sick of my wallowing. So I am trying to fake it till I make it. Many days, this has worked. I’ve taken on a new project at work. I try to engage more with my husband and my son. I check in with family and friends.

It’s a work in progress. I am going to talk to the doctor about adjusting my antidepressant. I will try to exercise more. But it is a fight, and sometimes I lose the battle. I’ve learned that I can succumb for a little bit — maybe even a day — because it’s OK to acknowledge the anxiety, worry, and anger, that comes with cancer, or even with our daily lives.

I also realize that allowing myself to feel and explore these negatives emotions needs a time limit, or the hills grow rapidly into mountains I cannot imagine climbing. Recognizing this seems like an accomplishment in itself.

Not much will change tomorrow. I’ll still be a mom and a wife and a business owner. A daughter, a sister, and hopefully a friend. Maybe I will be a little more grateful. A little more compassionate. I’ll listen to my son’s imaginary super heroes with a little more patience. Look at my husband and pay attention to what he is saying; pulling myself away from whatever I was doing. Maybe I will look up from my phone and look at creation with a little more awe and appreciation.

Cancer is life-changing. The key, I think, is to listen to what the experience teaches. To be present. To be loving, compassionate, and kind. To help others when it’s inconvenient for us. To be thankful to God for life and the strong body that helped me fight and beat cancer. To be happy and content with what and who I have in my life.

xoxo

 

On Books and Constancy

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Yes, that it is a book laying next to a toilet. The one in our powder room, to be more specific. The kid enjoys a good read while sitting on the throne. I know it seems funny for me to take a picture of this, but wait until you read why I did.

You see, that particular book — Harry the Dirty Dog — was written in 1956. I bought it from an adorable book shop about 8 or 9 years ago, when kiddo was around 2, and it’s one that has remained in his possession no matter how many times we go through his books (about every 6 months). He loves it. It’s one of his favorites — one he goes back to again and again even though he’s almost double digits and living in the 21st Century.

Books have been a part of the kiddo’s life since before birth. We read him Bible stories in the womb. We’ve read books to him nearly every night of his life. He’s an avid reader, and even chooses books over Minecraft sometimes.

I love that he chose to read Harry the Dirty Dog last night. I love that he has this enduring love — this constancy — for the books read to him as an infant and toddler. I love this picture because it shows me that while our family is dealing with some BIG life-altering things (like seemingly unending cancer treatment and the prospect of moving), my little boy finds security and solace in a good old book.

Kids are resilient, I know. We are told that pretty often, usually after some kind of minor parenting fail. And I’ve always believed that when he’s overheard an argument or when I showed him how to peel vegetables and he peeled off part of his skin. He’s resilient; he’ll be fine.

But when Mom gets cancer, it’s a whole different ballgame. The things I had always done for my child were suddenly insurmountable. There was no chaperoning field trips or volunteering at school; there were months when I couldn’t drop him off or pick him up. Times when those designated to go in my stead forgot him, and the school had to call me. I even had to miss his year-end project because I was recovering from surgery.

As any mother would, I worried that all of this would negatively affect him. That he’d be scarred for life. Instead, though, he made straight As for the entire school year. He reached a big milestone spiritually. He was resilient. Someone told me that those accomplishments mean that he feels secure.

Somehow, in spite of the upheavals that Cancer caused (and still causes), my husband and I managed to keep our little one feeling safe and secure. Mostly, I credit my husband. He took over so many of my activities — reading and saying prayers nightly, dropping him off at school, attending that year-end project — and most importantly, caring for him spiritually. All while taking care of me.

I look at my son daily, wondering with amazement at how seemingly “unaffected” he is by my illness. I know he is — in the way that he occasionally snuggles up to me for longer periods of time, or how quickly he’s willing to do something for me — but for the most part he’s a happy kid.

And I realize that he’s happy because he’s loved. Books may come and go; the snuggles may disappear; but he is and always will be able to rely on our love. It’s the biggest constancy in his life.

Thank you, Sinead O’Connor

I first became a fan of Sinead O’Connor when she released her rendition of Prince’s “Nothing Compares 2 U” in 1990. I was 13 then. Sinead’s bald head shocked many, but I have vivid memories of watching her videos on MTV (back when it played videos), and being struck by how gorgeous she was. It’s the first time I realized that some women can be beautiful bald.

Not that I supposed that I was a candidate. Over the years, I joked about shaving my head because I was frustrated with my fine hair that was so finicky, but never did it become a consideration until the “diagnosis.”

For me, I cope best when I expect the worst and hope for the best. Therefore, I began doing research as soon as we found the lump. Once I received the preliminary diagnosis, I knew I would receive Chemo — which probably meant hair loss — so I began to research that. I had determined even before I knew that it was Triple Negative Breast Cancer (for which the chemo drugs are so strong that hair loss begins between 7-21 days after the first treatment) that I would shave my head as soon as I noticed any hair loss.

This was my decision based on my personality. I won’t go into the reasons why I chose this course, because there is no “wrong” decision. This just worked for me. So before Chemo began, my mom and I shopped for hats online; and thanks in large part to Market giveaways (when we shop for the shop) and my Aunt, I actually have a rather nice selection of scarves.

Yesterday, as I washed my hair (and because it was day 15, which is right around when the hair begins falling out), I decided that Tuesday, December 1 was the day I would shear myself (you know, like sheep). I have the BEST hairdresser in the world, and she allowed me to come to her house instead of the salon to take the milestone step. Here we are before:

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As you can see, we are both very excited about this. Because, as my Aunt helped me realize, going bald is an outward sign to everyone that I am kicking this cancer’s butt!

Being the awesome stylist, Breast Cancer Advocate, and volunteer that she is, she stopped numerous times to capture the progress. But I won’t bore you with the step-by-step. All I will say is that we (hubs, kid, stylist, and especially me) were stunned by the result:

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The kid deemed me “beautiful and gorgeous” and pointed out that I look like Pink the singer. That was all the praise I needed, as I was most worried about how he would react. Hubs said I never have to grow my hair out again, and when the hair comes back, he wants me to try a pixie cut! The general consensus has been that I can rock it just like this, and I actually agree … but my head and ears get cold, so scarves and hats will still probably be part of my regular wardrobe.

The response just from texts and on Facebook and Instagram have been so empowering, so I genuinely and sincerely and from the bottom of my heart thank all of you for the outpouring of support.

In other news, some of my readers will be happy to know that alcohol no longer makes me want to run, and that I have actually been able to libate a few times. Yay for normalcy 🙂

Also for my regular I-have-cancer-so-let’s-milk-it post: If anyone knows how I can request VIP passes to The Cure concert in Atlanta (June 2016), please let me know. 😉

xoxo

Chemo Teaching & More

Today I had something called “Chemo Teaching.” Basically this means that one of the Nurse Practitioners on staff tells me all of the possible side effects of Chemotherapy, and then explains what is really likely to happen.

Nausea is likely, but I already have two prescriptions to help with that. Plus, I will receive anti-nausea meds ahead of the Chemo infusion. Fatigue is possible, as is anemia. My white blood cell count will be monitored very closely.

I’m likely to lose weight, but retain water and appear puffy. My hair will be gone within one to three weeks. Tonight I discussed this with the kid. He laughed when I said that I will be “bald,” but he thinks he will get used to it. He’s not quite on board with buzzing his head as a show of solidarity. And that’s OK. We cannot expect too much of a nine-year-old whose mom has Cancer and is going through Chemo. Both are scary words for him.

Between the time change and the anxiety of the diagnosis, I am only sleeping about six hours a night. Therefore, I am unreasonably excited about having my procedure tomorrow and being under anesthesia. A whole day of sleep is wildly appealing to me.

Speaking of tomorrow’s procedure … I am having something called a Port or Porto-Cath put in; it connects directly to my blood vessels. This is the site from which I will receive Chemo and have blood drawn. I will also have something called a Sentinel Node Biopsy. When I had my breast MRI, one of the lymph nodes lit up. The Sentinel Node Biopsy will help to determine how many — if any — nodes are involved.

In preparation for tomorrow, I was instructed to shower tonight and tomorrow morning with antibacterial soap. Tonight, in hopes of being able to blissfully unwind (yeah, right) I took a leisurely shower. I washed my hair and face, used the antibacterial soap, and shaved my legs and under-arms. As I completed this, I realized that I pay more attention to what my surgeon may or may not glean from my shaving or lack of shaving than to how my husband feels about it. Sadly, I want my surgeon to think I have it all together (Ha!), more so than my Hubs. Sorry, babe … maybe it just means I know that you won’t judge.

Now I will watch two more of my crushes: Shemar Moore and Matthew Grey Gubler. Criminal Minds is my fave show. Please oh please … could one of you show up in my dreams tonight?

xoxo

Exhaustion, Celebrity Crushes, and Ice Cream

I am tired. I have had six appointments in the last seven business days — today being my only reprieve. Tomorrow I have another appointment, followed by my port insertion and sentinel node biopsy Thursday morning.

The first of my chemo-caps/hats arrived today. Mom and I ordered several on Sunday night. Better to have them before my hair begins to fall out. My hair stylist is on call to shave my head.

I was finally able to spend a full day at the shop. It seems that a cancer diagnosis brings a large number of visitors to check on me. Today I had no less than five people stop by; one of whom I’d never met before, but heard of my diagnosis from another of my neighbors/customers. Fortunately the afternoon was quiet, and I was able to cross a lot off my list.

In the days since my diagnosis, life seems surreal at best. I fill out the same paperwork at each appointment, and for the reason each test is being ordered, I have to write “breast cancer.” I feel like it’s all a dream. Even when I  am discussing my diagnosis and treatment, I feel like I am speaking for someone else. It’s tough to determine whether this is my coping mechanism or if I’m in some sort of denial.

Speaking of dreams, I had the most wonderful one the other night. As some of you know, I don’t have celebrity crushes on “typical” celebrities. Except Johnny Depp … many share my love of him. Not so many people share my extreme affection for John Malkovich and his amazing voice. Or Mo Rocca and just how utterly adorable he is (I mean c’mon, his show is “My Grandmother’s Ravioli”).

Anyway, my dream the other night was that I got to meet John Malkovich. And I got to tell him how I fell in love with him after we read The Glass Menagerie in school and watched the movie. And he laughed and hugged me. And told me I should study ornithology. What??? John Malkovich, if by some strange chance you read this, can you explain to me why you wanted me to study birds? In any case, Mr. Malkovich, it was the first really good dream I’ve had in a long time, and interacting with you in my dream made me feel so good.

And Mr. Rocca … please know that I love you too, and you’re welcome to visit me in my dreams any time (I used to have a picture of you hanging in my office cubicle once upon a time).

Don’t blame a girl for using the C-word to try to get some attention from her crushes. It was successful in getting a late fee removed … so I’m getting a little cocky.

Back to reality …

Hubs told me tonight that every night when the Kid says his prayer, he pauses, and then says, “Please help my Mommy to feel better because she is sick.” It’s the last thing he prays for. I worry for him when I lose my hair. How will he react? I know children are resilient, but I do worry about how he will handle things once my treatment starts.

Many thoughts and worries are filling my mind these days. Please know that if you have texted, messaged, or called and I have yet to respond, I appreciate each word of kindness. Between appointments and phone calls, and concerns over family and work, by the end of the day I am so tired I cannot think straight. I will try to respond to each message; I just ask for patience as I adjust to my new normal.

Feel free to ask questions in the comments, to share my blog, and to continue to send me texts, messages, and to call. I love and appreciate every single one. Especially to my wonderful friends that I made through my husband who sent me wine-flavored ice cream. Yes, you read correctly. If you’re local, you’d better line up for a chance to share it with me. And there is no guarantee that I will.

xoxo

The Devil in the Details

Yesterday we met with the Oncologist. We had a full house — Mom, Dad, Hubs, Breast Care Navigator, Social Worker, and a Med student. My oncologist immediately put us all at ease, joking with us, and making us smile and laugh.

He gave me my full diagnosis, complete with stage:

Stage 2 Triple-Negative Invasive Ductal Carcinoma

What does that mean, you ask? Let me dissect it a bit …

  • Stage 2 is good. It means it hasn’t spread outside of my breast, except maybe a lymph node Yay!
  • Triple-Negative means that it isn’t caused or affected by my hormones. So, I am not a candidate for hormone therapy. It also means that it is a very aggressive type of cancer.
  • Invasive means that the cancer cells have gotten greedy and spread outside of a single milk duct.

Treatment Plan

Beginning November 17, I will undergo approximately six months of Chemotherapy. Triple-Negative Breast Cancer is known to benefit from Chemotherapy prior to surgery. After the Chemo, I will have a mastectomy followed by radiation.

Likely effects will be hair and weight loss. The entire process will be close to one year.

We thank everyone who has offered kind words of support during this time. The last ten days have been mentally, physically, and emotionally exhausting. I plan on using this weekend to process some of my emotions, so that I am ready emotionally and mentally to fight.

I apologize for the overly factual nature of this post. My mind is so taxed that I’m not quite able to form many emotional thoughts. I am sure they will come to me shortly.

Int he meantime, hang tight … I’ll post more soon.

xoxo