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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Visit at the Right Time

A true friend shows love at all times,

And is a brother (or sister) who is born for times of distress.

                                                                   –Proverbs 17:17 (NWT)

My best friend and her husband came down for a visit this weekend. She’s my friend that I’ve mentioned before — she sends me a card every week. She and I FaceTime regularly. We are kindred spirits, and I feel very blessed to have her in my life. She remembers things about me that I even forget, and she listens more closely than I realize, as is evident from different gifts that she will send me throughout the year. I can tell her absolutely anything, with complete confidence that she will not judge me.

The weekend was so refreshing and just what I needed. We made virtually zero plans, aside from what to eat and where to eat it. And we just talked. And talked. And talked. It’s amazing that we even have anything to talk about, since we talk via text and FaceTime often, but we always do. Conversations drifted back and forth between topics, and we rarely actually finished one, as we got distracted by the next. But we would have it no other way. It’s the way our friendship works.

Recently I have felt lonely. Being under the influence of strong opioid drugs, I do not drive so my ability to run errands, or even to engage in some casual retail therapy, are very limited. Some days — even if I have the opportunity to be chauffeured around — I don’t feel up to it. It’s a very solitary existence, and I’ve given in to self-pity.

The reality is, though, that I am blessed with real and true friends. Friends that are family, both literally and figuratively. Friends that use their mileage points for me. Friends that carve time out of every week to send me a card or to FaceTime with me. Friends that make me laugh until I cry and friends who text me just to check in. Friends who are genuinely happy for me when I get to spend time with another friend. Friends who end their texts and phone calls with “love you.”

As my kindred spirit left today, my mother-in-law and sister-in-law arrived. They, along with my local sister-in-law and family, greeted me with long, protective hugs and faces that showed their happiness at seeing me.

My friends have made the story of my life.
–Helen Keller

This Tuesday I will find out the results of my scans. I will either receive good or bad news about how the Chemotherapy is or isn’t working. My oncology team will either tell me to continue the Chemo regimen I’m in or we will explore other options. I’ve been nervous about this appointment since last weekend. As to be expected, I am still anxious about the appointment, but I sit here writing without the dread that’s been hanging over my head.

I’ve been strengthened and refreshed by my visit with my sweet friend. It’s simply impossible to enjoy the friendship I’ve enjoyed this weekend and continue to have dread in my heart.

And I can feel the support of my family as I head into the week of unknowns ahead of me.

Thank you, Heavenly Father, for reminding me that I’m not alone at all.

xoxo

First Day of Chemo, Leggy Style

We went over the results of the scans this morning. The good news is there is no other organ involvement; however there is significant lymph node involvement, especially in the area around my lungs. The course of action remains the same: Gemzar treatment. I’ll go through about two rounds of treatment and then have scans to check the progress, if any. The primary goal is to get me as pain-free as possible and to slow the progression.

When we did “chemo teaching” last week, I mentioned to my social worker and nurse Oncologist that the name Gemzar makes me think that the chemo is like royal treatment and I’d sweat glitter or dazzle and sparkle or something. I may have suggested that I might dress up in some sparkly get up. However being as hopped up as I am right now I failed to follow through on my glitter outfit.

Alas, my social worker did NOT forget. She brought me a tiara, rings, a scepter and decorated my chemo bag with gems. Oh and a princess mask. Fortunately we got pictures!

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Overall, the chemo went well. No nausea. No extreme fatigue. So far this afternoon I’m holding together pretty well. We will see how I feel tomorrow.

Yesterday’s post was a long time coming together. I spent the entire day trying to write it, but I kept falling asleep. At one point I woke up to “fffffffffffffffffffffffffffffffff” on the screen. But I am trying to write as I feel motivated. Even if it takes me all day.

Love to you all. If there are any questions you have about cancer, side effects, prognosis, symptoms, or anything else, please ask me. I love to be given a task. You can ask me in the comments here.

Love you all!

xoxo

When Words Don’t Mean Enough

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These words seem so trivial to express what I wish to convey. The outpouring of love and compassion has been overwhelming, and all three of us are in awe of your caring spirit. Friends have offered practical help — such as setting up meals for us — but also emotional help. I’ve had several friends offer to listen if I want to scream or cry in my frustration. Be forewarned, I may accept both offers.

Some of you barely know me, but our worldwide brotherhood has allowed us to have strong bonds anyway. Some of you have the ability and talent to see feelings and emotions in me that I am just discovering for myself. Some of you know just which scriptures I need to hear.

You will continue to amaze me by your insights, and please know that each and every word — spoken or written — I treasure. I may not express my gratitude fully enough. Some words may hit me so sharply that I cannot respond without losing my composure. Some words may be so truthful, I’m not ready to hear them yet. And some may simply come while I’m medicated and unable to remember. What I won’t ever forget, though, is how your words have made me feel.

 

My friends have made the story of my life.
Helen Keller

With my first foray into breast cancer, I had virtually no pain, other than what was associated with surgeries or procedures. Nothing that couldn’t be treated with Percocet. This experience is totally different. This time around there was immediate discussion of pain management. I was given Morphine almost immediately, and then Dilaudid as I was admitted.

The hospital doctors were hesitant to give me anything too strong at my release; however my Oncologist is familiar with the pancreatic pain associated with these types of cancers. He has me on two 25 mcg patches of Fentanyl, and Dilaudid 2 mgs every six hours as needed. Unfortunately, I’ve needed all of these, and sometimes I still have pain after taking them all.

We had our circuit assembly with the Branch Representative this weekend. We’d hoped to stream it, but it wasn’t uploaded yet. I really did want to attend, but I also didn’t want to risk getting sick. Plus I’m still not feeling like myself. Instead, we stayed close to home, did some personal study, and spent time together the two of us (our son went to the assembly with Nana and Papa).

Your cards and notes have already started appearing and brightening my days. I’ve gotten funny memes and greeting cards; notes of support from those I barely know. I’m reading each card, each comment. I’m listening to your sympathetic tones of voices.  It may be through a a dazed mind, but I am listening and appreciating your love for me.

I’ll continue to keep you posted.

xoxo

The Girls are Coming Back

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Let me begin by talking about this girl — Irma. We are in the path. We are evacuating to Tennessee, renting a house in the mountains. We were in Matthew’s path last year and were evacuated for about a full week. Matthew was a category 2. Irma is projected to be a 3. We saw damage with Matthew, and we expect damage with Irma, too.  Last year, I wasn’t as concerned … our home wasn’t near water or trees, and it was a townhouse. This time around, it’s different. We bought a home this April — a single family home with lots of trees and marsh across the street. I’m trying not to freak out.

Irma is not one of the “girls” I am referring to in the post title. But since many of my readers know my general location, I thought I’d go ahead and let y’all know that we are planning to evacuate and where. If you’re reading this and thinking, “Tennessee! That seems awfully far,” Tennessee was as close as we could get. If you consider that pretty much the entire state of Florida must evacuate, plus coastal Georgia, and coastal South Carolina, it seems easier to comprehend

Anyway, to explain the “girls” that are coming back …

I am getting my DIEP Flap surgery on November 28th! 

That’s right! I’m getting the breast reconstruction that I have really always wanted to get! Initially, we went with the simpler implant reconstruction because the recovery is easier, but I was very unhappy with the results. Once the left implant had been removed, I decided to pursue the DIEP flap procedure.

We all know that health insurance can be a blessing and a curse, and this case was no different. I qualified for a Medicaid program which meant low copays and very little out-of-pocket. It also meant that surgeons who perform this procedure don’t work with Medicaid (surgery cost far outweighs Medicaid’s payout). In the meantime, my husband received a significant raise which bumped us out of the income qualifications for Medicaid. Long story short, I’m now on a BCBS plan that will cover the surgery (but means more out-of-pocket cost for us).

With the new insurance in place, I immediately called the surgical practice and got in on Tuesday. Fortunately, it looks like I am an excellent candidate! The earliest availability is the date of my surgery. I am over the moon.

Some of you may be wondering what the DIEP Flap procedure is. I’ll explain as much as I understand. Don’t ask me what DIEP stands for, though, because I can’t remember. Basically, they take the fat and tissue from my tummy and use it to form new breast mounds. It is at least a two-part surgery. The first one is the major one. The second (and any others) are to fine-tune and smooth out my breasts and stomach.

Some things you might be thinking:

  • Hey, I’ve got some fat I could donate! Thank you, but that’s not the way it works. Plus, I have plenty of my own.
  • Does this mean you get a tummy tuck? Yeah, pretty much!
  • How long will you be in the hospital? Four nights
  • Why is this surgery better? Um, see points one and two. Plus they will look more natural and be closer to my original size. I may even regain some feeling that I lost with the initial reconstruction.
  • What is recovery like? I’ll be up walking the day after surgery. I will probably be a little stooped over at first. The most difficult thing will probably be “T-Rex” arms. I will not be allowed to reach for anything or lift my arms higher than 45 degrees for a while. I will have drains, but only about a week up top and three weeks in my tummy. I can drive after all the drains are out.

Feel free to ask me any other questions about it! Also if you have had similar surgeries, please give me any tips and suggestions you might have.

In the coming months, I will be trying to strengthen my core, lose some weight, and get into an exercise routine. These things will help with my recovery and my post-surgical appearance. With the “forced vacation” evacuation, I hope to work on a healthier routine.

I am happy to report that 40 is treating me well so far. I was able to add some medications to my antidepressant regimen, and the difference is fairly dramatic. I have more energy and less anxiety. Everyday activities and chores no longer feel like mountainous treks; rather I find myself regularly checking off my to-dos with a sense of accomplishment and satisfaction. It is a huge relief to me to be feeling more like myself.

Work is fun and exciting. My self-esteem is still suffering, but with the knowledge of my surgery coming up, I am feeling a little less self-conscious. And also more motivated to get some exercise in and to eat better.

Thanks so much for sticking with me and continuing to read. I’m sure I’ll have more to write about soon!

xoxo

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

 

I’m Still Here …

Wow! I’ve got so much to tell you. I think … We’ll see how much I can remember. Where should I begin?

Let’s back up to a couple weeks ago. I got sick. Pretty darn sick. My white blood count went down to 1. I was very anemic and neutropenic. And I had a Shingles breakout and cellulitis underneath it. I had to get a daily Neupogen shot. Which made me feel icky. It all made me feel icky, honestly. The worst part was that I had to skip my Chemo that week.

I’m better now, though. I’m still anemic, but everything else looks good, so I have had chemo the last two weeks. Only three more left!!! And guess what! My BFF may be in town and able to come with me next week!

She’s coming into town this Sunday — correction — her whole family is coming into town Sunday. I’m over the moon excited. I have two soul sisters from Pennsylvania, and they are both coming with their families in the next few weeks and it makes me ridiculously happy. Friends are the best!!

So, I have no idea what I have shared and not shared with you, but currently the hair on my head is growing but I’ve lost my eyebrows and eyelashes. My awesome sister just sent me like a million pairs of fake eyelashes. Let me tell you, these suckers are tough to put on! I successfully donned a pair yesterday, with mixed reviews on the make up along with it. Today, I tried again, but my eyes were watering, and one of the lashes started falling off, so they came off early. So no pics yet. I’ll get one when I perfect the application.

My mood swings from frustration to acceptance. But I only have three more chemo treatments. So I can hang on for these next three weeks. I just need to rest when I feel like I need to rest (which, honestly, is most of the time).

Please bear with me … I will try to update again. My brain is pretty much fried, though, so it gets a little difficult to pull words together. And sometimes I completely lose my train of thought.

xoxo!