Time Left & How to Spend It

On Monday, I went to our shop for the last time. I haven’t been much since my diagnosis, but even though it was nearly empty, memories of my work there came flooding back. Helping customers old and new and creating ads and social media. Scrolling through hundreds of emails looking for potential new product.

One day, I was in the middle of revamping the stationery section, ordering new product, and the next I was in the hospital with a Stage 4 cancer diagnosis. The decision was made fairly quickly that we would need to close the shop. Between the appointments, getting chemo started, and getting my pain managed, it was easy for me to avoid the store, or even thoughts of it. When I did get there, though, it was tough. I was sad that I was losing such a big part of my life because of cancer, but I pushed those feelings away because they were too painful.

Besides, when I received my diagnosis, I didn’t think I’d last as long as I have. It hit me Monday at the shop, that I’ve lived six months so far from my diagnosis. Not only that, but I’m thriving, really — responding phenomenally to treatment, feeling pretty good other than fatigue. It seems like I may be here for a while longer.

And while that’s really great to think, it’s also daunting in a way. I’m no longer content to just float along essentially waiting to get worse. I want to feel a sense of fulfillment. Don’t get me wrong — I’m proud of the hard work I put into teaching my son. It provides me with satisfaction to know that I’m contributing to his education. But I feel like I want more.

Between homeschooling the kid and my chemo recovery, I’m unable to get out in my Bible ministry much during the week — which I know would provide me the greatest sense of satisfaction and fulfillment I can find in this world. But, I do go when I can, and I try to arrange Bible studies that I can participate in after the kiddo is done with school for the day.

I have an opportunity to mentor new cancer patients, and I really look forward to that. But I’ll need to be balanced in how involved I get. I have the tendency to want to help everyone, and that often leads to me stretching myself too thin.

My social worker has encouraged me to go ahead and start engaging in activities that will create memories for my family after I’m gone. It’s important to me too — because I want to do these things while I still feel pretty good. We have our trip to Alaska in June — which is going to be amazing — and my social worker has given me some other really great ideas. So I want to spend time on these important activities as well.

As you all know, I love to write. I can’t remember if I’ve mentioned this on the blog, but I am writing a novel, too. It was an accident, really. I started writing a short story, but it got too long. So I decided to stretch it out and beef it up and try my hand at a novel. It isn’t a goal I’ve ever had, but now I’m anxious to see if I could get it published. I’d also love to land a recurring gig on an online magazine or something like that, but I have no idea  how to get that ball rolling. I’d just like to write and to be read. And hopefully to help people through that writing.

I don’t know how much time I have left, but I’d like to use that time well. Reasonably, but well. Get out in the ministry when I can (which will increase this summer); work with first-time cancer patients, make memories with my family and friends; and write for a wider audience. Sounds do-able, right 😉

Tell me friends, what do you do to find self-fulfillment? What brings you the most satisfaction and joy? Please share!

xoxo

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End of an Era

I’m usually the one with all the words. This time, Mama wanted them to share this news. She’s done it beautifully, so I will leave it to her:

We’ve loved these days…

Many of you, our dear customers and friends, know that the younger partner in our mother daughter partnership was diagnosed with breast cancer in 2015. Some of you know that the cancer has returned. Unfortunately, Allegra will be in treatment for quite a while and the treatment is no picnic.

The older partner in this arrangement wants to be able to drop everything at a moment’s notice to be available for Allegra. All of the mothers who read this will understand. It is for this reason that we have decided to close our shop, Joli Home Accents.

To paraphrase an old Billy Joel song, we’ve loved these days. We have loved being a part of our charming Bay Street shopping district. We have loved our fellow business owners. We have especially loved you, our customers. You have made Joli a joy to own and we thank you from the bottom of our hearts.

Joli’s last day of operation in 2017 will be Saturday December 23. We will reopen for a five day clearance sale in January. Please check our Facebook page and Eat Sleep Play Beaufort for dates and further information.

Again we want to thank you all for your loyalty and patronage. It has been a privilege and “We’ve loved these days”.

Cheryl and Allegra, The Shopgirls

Good Day, Sunshine

I got the results of my biopsy today. For those of you just tuning in, I have been having some pain in my groin and it was determined that the lymph nodes there were swollen and enlarged. It appeared that the cancer had spread to them; however to make sure, I got a biopsy of the nodes.

They’re NOT cancerous!

Can you believe it?! Everyone was happily surprised (cue the above song in my head). It had really seemed as though the biopsy was a formality and that they must be cancerous, but they’re not!

So what does this mean?

A few things:

  1. The cancer has not spread. I already have the mass in my pancreas and significant lymph node involvement. These have responded dramatically to the chemotherapy. If the lymph nodes in my groin had turned out to be cancer, then the chemo drug I’m on wouldn’t have worked as well as we thought, and we would have to worry about continuous spreading of the disease.
  2. I don’t have to alter or add anything to my chemotherapy regimen. Since they’re not cancer, it means that my chemo drug IS working as well as we want it to, and I don’t need to change a thing about my routine. Adding another chemotherapy drug could have meant additional side effects like losing my hair, lower blood counts, more pain, etc.
  3. I get to stay in my chemo routine. I mentioned this above, but to explain in more detail, we chemo patients learn our routines once we get into a chemo regimen. We learn what days are good, what days are bad, and what side effects to expect. If a new chemo drug is added, it’s like starting over again. We have new good and bad days to adjust to and new side effects to learn and to navigate. Being able to stay in my current routine is much easier on me.
  4. Going forward, I will continue the Gemzar (chemo drug) schedule — three weeks on, one week off. Scans (PET and CT) will be every three months. This will continue until a) the Gemzar stops working, or b) the Gemzar becomes toxic to my body. The end date of this chemo cannot be predicted; we just watch and see what happens.
  5. As far as what caused the lymph nodes to be painful and swollen, we don’t know. And quite honestly, we don’t care because it’s NOT CANCER.

But God is faithful, and he will not let you be tempted beyond what you can bear, but along with the temptation he will also make the way out so that you may be able to endure it.

1 Corinthians 10:13 (NWT)

I am so grateful that God knows our limitations and provides us with what we need to endure different trials. I’m so thankful for this news. It feels like someone just added more time to my timer — took one big spin backwards on the dial.

This is the most optimistic I’ve felt since my re-diagnosis. It’s the first time I’ve breathed a sigh of relief, that I’ve thought of my expiration date as possibly being years away instead of months away. Researching and planning our big trip in June fills me with excitement instead of trepidation.

Today is a Good Day, Sunshine.

xoxo

Newsy Post: Scan Results

I saw my Oncologist this morning for my scan results. As you know, I’ve been nervous, especially because I’ve been experiencing a new pain in my groin area, where there are lymph nodes.

The bad news is that it does look like the lymph nodes in my groin are cancerous. We will confirm with a biopsy (waiting for it to be scheduled). In case it is simply an infection, I will start antibiotics tomorrow. If it is cancerous, there are chemotherapies that can target it that can be added to my regimen.

The good news is that the tumor in my pancreas and the surrounding lymph nodes are responding beautifully. In fact, my oncologist said they are “dramatically better.” I cannot tell you the sense of relief I feel at this news. I am so happy about this, and I feel “cautiously optimistic” for the first time in this journey.

Today my family, friends, and I are celebrating this small victory.

Also today, we mourn the loss of our sweet friend and fellow cancer fighter. She fought hard against cancer for around the last two years. She maintained amazing strength, faith, and optimism throughout her journey. We are thinking of her family — husband, daughters, sisters (brothers?), parents, nieces, nephews, aunts, cousins, and more. She will be so missed, but we know that we will see her again soon!

xoxo

Bucket List

I’ve been thinking about a bucket list lately. It wasn’t something I gave much thought to until I got this diagnosis and started to realize I have a finite period of time left.

November is Pancreatic Cancer Awareness Month, and I was doing a basic knowledge quiz. The average life expectancy for pancreatic cancer patients is five years. Does that mean that I should compile a bucket list? Is a bucket list even a reasonable list to make?

Do people really make bucket lists and cross off all their items? I don’t know that I can think of enough items to make a list. I can’t think of a whole lot in this life that is excessively important to accomplish I have travel goals, of course. And I have famous people I’d like to meet. I guess there are things I want to try, but because of my future hope, I’m not overly anxious to make sure these things happen before I die.

Then there is the concern of how realistic my bucket list items are. Seeing the Grand Canyon isn’t unreasonable in and of itself, but taking the summer to drive cross-country, spending time in various national parks may not be realistic. Meeting Johnny Depp is definitely not realistic. Writing a book is a reasonable and excellent bucket list item, but writing a book that is published nationally may be too lofty.

Not being a risk taker, I don’t have goals like bungee jumping or sky diving. I don’t want to train for a marathon or even a 5K. I want to become a published travel writer and commune with nature in Glacier National Park for a couple of weeks. I want my book to reach a spot on the Bestseller List. I want a blog post or essay to garner national attention.

Clearly my bucket list items don’t follow the S.M.A.R.T. guideline for goals. I’ve got the Specific and Measurable down, but things fall apart after that.

I think I’ve drawn my own conclusion about making a bucket list — though I fully intended to ask your opinion. It’s better for me to keep my dreams and goals quiet but lofty. A bucket list is not necessary for this girl.

On the contrary, I’ll be thankful for any experiences I get to enjoy over the next few years. Like the once-in-a-lifetime trip to Alaska this coming June with my family. Or the visit later this month from my kindred spirit and soul sister (and her husband). And the visit from my mother-in-law and sister-in-law who I’m anxious to see since my diagnosis. Even the simple sleepovers with my niece (24) and great-niece (3), where we tend to stay up late and talk about everything and nothing at the same time.

I can think back over recent experiences, too, like when my big sister came for two weeks to take care of me and we both picked new projects to work on at Hobby Lobby. My sister learned how to draw butterflies and birds, but I’m no better at my hand-lettering. And how she worked with my son every day after school on his homework, so I could rest.

Bucket lists may be important to some people, but at the risk of sounding obnoxious or over-privileged, I feel like I get to experience bucket-list sized events regularly. Either that, or my definition skews between overly simple and ridiculously unrealistic. But I always receive support when I need it, and I get to experience some pretty cool things in my life.

Not Goodbye

We said “see you soon” to two of our best friends last night. We’ve known them almost ten years. Our times together are marked by laughter. Our kids, despite the age difference, get along fabulously.

These are people we can text and just say, “Wanna hang out?” Most of our time together is spent talking, playing games, watching TV or a movie and laughing. A lot. Ours is a comfortable friendship — there is no competition or need to impress. They see me without makeup and without my prosthetic.

They were there for me through my first battle with cancer, and they have been here for me again this time. She, her daughter, and her mom celebrated my last chemo with me (remember the boob cupcakes?).

She was there for me when I lost my very best friend, offering support and wise advice. She’s younger than me, but I don’t notice. She’s dealt with so much in her life that she seems older. She’s comfortable in her own skin, unafraid of being herself — something I still struggle with at 40.

She’s an entrepreneur, a talented photographer, and recently added teacher to her titles when she started homeschooling her daughter. She’s not afraid of new things — hence the move.

I will miss her tremendously, but I don’t worry about staying in touch. I can be a good long-distance friend. There is texting and FaceTime. Instagram and Facebook. And there is always the opportunity to visit.

No goodbyes, my sweet friend. Only see you soon. Have fun on your new adventure. I love you.

xoxo

This Time Around

Even though this is my second time with breast cancer, so many things are different about this experience. Aside from the obvious things — different parts of my body, a more serious stage, a different prognosis — I’m finding other differences as well.

I’m already experiencing low blood counts. I believe this is typical of Gemzar, but I have already had to postpone my third treatment because my blood counts are off. I’ve only had two treatments. I’m on a preventive antibiotic. Last time, it was months of chemo before my blood was affected.

My energy level is lower. This may be because of the Fentanyl patch I’m on, or it may be that this cancer is taking more out of me than last time. Most nights I am in bed before 9:00 and I’m asleep until around 7 or 8 the next morning. Some days I nap through the whole day.

I’m on pain medication. My original breast cancer had no pain associated with it. None. The pain of the mass in my pancreas was excruciating. Bad enough that I wear a Fentanyl patch 24 hours a day. Granted, I’ve come down to a lower dose, but the doctor isn’t in any hurry to wean me off of it.

My emotional state/outlook have changed. With an unclear and unsure prognosis, remaining positive is more difficult for me. I feel like I’m in limbo and I’m not sure what to do with myself. As a planner I prefer structure to my days, but with the gravity of this diagnosis my only job is to “take care of myself.” This leaves me kind of lost as to how to spend my time. My sense of humor has gotten darker, and I’ve become more reserved.

Not surprisingly, this last one has been most difficult to me. Last time I took on the role of fighter — I had something to beat, to get rid of. I had a concrete task. This time, it isn’t so clear, not so black and white. Instead of beating or getting rid of something, we’re trying to control the progression of it. It makes for a much more difficult fight song or cheer. Instead of “fight, fight, fight” it’s “control, control, control.” It doesn’t flow as easily.

I’m sure as time goes on, I will get used to my new normal. Taking it day by day. Appreciating the little things. Accepting that “taking care of myself” is my new full-time job. Already, I feel myself slipping into a bit of a routine, and that makes me feel a little more stable.

As with any life-changing event, this will take a period of adjustment. I know that; I just need to accept it. I need to remember that I have an abundance of support in my family and friends. I need to remember to rely on God and remind myself that He is holding onto my hand (Isa. 43:10, 13). That He will help me get through every step of this, no matter how difficult the steps might be.

Today was a rough day for me. But I talked to my husband and my mom and received reassurance, strengthening, and commiseration. Having someone acknowledge and assure me that my feelings are valid is extremely comforting. Having someone offer to help me in tangible ways is strengthening — both spiritually and emotionally. The amazing thing is that I get support like this on a daily basis from so many people. Some friends text me encouraging words. Some send cards. Some I get to speak to and/or see daily. And I thank God for all these ways that he’s giving me support. I may have a life-altering diagnosis, but I am blessed to have my support team standing with me.

xoxo