Friends and Facts

Last week I received the results of my latest scan. The great news is that my cancer is no longer detectable on the CT scan. This means that the chemo is working, and has shrunk it dramatically — to the point we can’t see it. What does that mean for me? Not much. I’ll continue on my chemotherapy schedule with Gemzar. I’ll have a little more flexibility if I need/want to take chemo breaks/vacations  — like when we travel to Alaska in June — but basically I will keep to my routine. Overall, I’m pleased at the progress.

We have these friends who we only get to see every year or two and lately only for a couple days at most. But it doesn’t really matter because we just pick up where we left off — like the time apart hasn’t been time apart — and spend virtually the entire time together talking. Literally not shutting up except to sleep. And we talk the four of us together, as our children play — picking up where they’ve left off, too — or husbands and wives separately. Catching up, discussing parenting, volunteering, and life in general. And laughing. Oh do we laugh. Great big belly laughs with tears running down our faces, making jokes out of almost anything and everything.

It is always, always a soul-refreshing time. No matter how short. This visit we spent less than 48 hours together. Because they love us so much that they were willing to drive more than 22 hours round-trip to spend a day and a half with us. I can only hope we provide half the refreshment they provide us.

Friendship can be a fickle and fleeting thing, so for me to count these two beautiful people as dear and precious friends makes me feel so blessed. I am not one who has a wide circle of close friends, but I’m so fortunate to have a few amazing people in my tribe. I have done nothing to deserve these stellar souls in my life, but they are and for that, I am deeply grateful.

Thank you both for making the sacrifice to come down to see us. Thank you for the laughs and the conversations and the encouragement. Thank you for your loyal and unwavering friendship. We love you more than we can ever express.

xoxo

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A New Adventure

You may have noticed that in my last post I slipped in the fact that we were transitioning our son to online school. It’s an idea that my husband and I have tossed around for a while, but we’ve always ruled in favor of traditional school. Our son has been at a charter school since its first year (1st grade) and we’ve stuck with it in spite of their growing pains.

It’s on its fifth or sixth (I think) head of school; because of location of the buildings, the school’s been on lockdown at least once every school year; and our kiddo has had some issues with bullying. His second grade teacher was awful, and the teachers he had this year proved less than cooperative with Allen’s newer academic issues (finishing and turning in school work in a timely manner).

With all the work I was putting into helping him get school work turned in on time without the support of his teachers, I just decided it would be easier if we tried an online schooling program. We also figured that we would all continue to wonder about it until we tried it. So beginning last month, he started with an accredited online school. For now, I’ll withhold the name of it, since I’m still unsure of how I feel about it.

That’s not to say we don’t still have reservations about schooling him at home. I worry about socialization and his ability to stand up for his beliefs. And I worry about my own sanity. I worry about the health of our relationship, and whether being his “learning coach” will ruin our relationship.

At first, things were very confusing, as the teachers began to adjust his curriculum to fit with his peers and with his academic level. But we muddled through and now have a fairly smooth and regular schedule. Except on days like today when Math took the Kiddo three hours to complete. Yes, you read that right — three (3) hours.

Obviously, my patience has been tested. He’s easily distracted and consistently complains when he has an assignment that involves writing. He’s convinced that he can do math in his head, but gets frustrated every single time he tries it because he gets the wrong answer. Sometimes he aces his assessments and other times he has to retake them because he fails to read the question completely. My husband receives texts at least weekly from me, stating that I can’t do it.

But then I step back and look at the situation with less emotion. And I realize that I have a limited time left with my kid and this is a great opportunity for us to spend time together. And I watch the news to see yet another school shooting where 17 have been killed, and I think that maybe this wasn’t such an insane decision. That maybe, just maybe, my husband and I got it right.

So we will continue to work at it. We’ve committed to staying with the online program through the end of the school year before making a final decision. Maybe we will decide to stick with it as long as I’m able to “coach” him, and maybe we’ll decide to put him back into a public school next school year. But for now, we’re figuring it out and we’re making it work. And the Kiddo and I still like each other.

xoxo

Here

I’ve known her since I was six years old, and she was three. We’ve been friends since we met. It was really by default — our parents were best friends; our siblings were the same age and shared a mutual disdain for us, so we became quick comrades. Our parents gave us the same toys to play with (like dolls and prestidigitation (not magic!) sets) and enrolled us in similar extra curricular activities (like dance classes). For about three years — until our family moved to Florida — we were inseparable.

She and I went to Italy together when I was 22 — a trip we will never forget — and she was in my wedding a year later. Now we’re practically related; my sister married her brother. As with many adult friendships, ours has not included frequent visits over the years I’ve been married, but we’ve been there for each other during the important milestones in life.

During my first fight with breast cancer, my sweet friend sent me care packages from Sephora — if you’ve been following my blog long enough, she’s the friend who sent me eye shadows and mascara and lipstick and masks and nail polish — gifts that allowed me the distraction of doing my makeup and dressing up my face and making me feel feminine during my battle.

When my friend’s mom got sick she helped care for her over four long years while her mother continued to deteriorate. Her mother became a shadow of her former self and it was heart-breaking to watch her go from such a lively and vivacious person to one who barely spoke or smiled. I can only imagine how difficult it was for her family to watch it first-hand.

This friend is a self-acknowledged introvert. We don’t speak about feelings or emotions — she keeps those parts of her deep inside her mind. But she has shown me her feelings and emotions through her actions — from being the ideal bridesmaid (smile and do what the bridezilla says) to sending me Sephora care packages to most recently coming to visit me.

If you remember, I’d met with a surgeon in September who was going to perform a DIEP FLAP reconstructive surgery for me. I encourage you to Google it if you want details of the surgery, but the short version is that the surgeon takes the fat from your abdomen and forms breasts out of it. Long-term results are great, but the recovery is intense and difficult. I was scheduled to have the surgery around Thanksgiving, so my sister was going to stay with me immediately after, and my dear friend was going to follow behind to continue to aid me in my recovery.

The fact that I got sick again and that the surgery was cancelled did not mean that she could not still visit, so she went forward with her plans to come see me anyway. She arrived last Sunday.

I have a confession: I was nervous about her visit. I have not had anyone other than my immediate family around me during my chemo “aftermath” — that is the time after chemo when I crash, sleeping almost constantly while experiencing flu-like symptoms. I wasn’t sure what to do with my friend when I got like this. And she would be here for the entire time I would feel this way.

What I forgot is that my friend — being an introvert — likes the quiet. She also had experience with caring for someone who was ill. I had nothing to be worried about. She didn’t seem to mind at all.

She left this morning, and I’ve been thinking about her visit ever since. Initially I was concerned over whether or not she enjoyed her stay — she can be a little difficult to read. But as I thought more about it I realized that all indications pointed to a successful visit.

We bonded over Pitch Perfect and binge-watched some shows on Netflix that we really enjoyed. She seemed to enjoy the companionable silence as we each read on our tablets. We laughed together — a lot. She loved our dogs and seems to have decided she’ll look for one of her own to adopt. She hugged me tightly when we said goodbye at the airport.

With this friend, I discovered, I just have to pay attention. Watch her face while she’s watching a movie or petting my dogs. Listen when she speaks. Recognize that silence isn’t always a bad thing. And give thought to what her kind gestures really mean. Doing that made this image pop into my head.

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I love this illustration. It’s so matter-of-fact. There is no elaborate explanation or ceremony. No big presentation. Just the word “here” as she hands over her heart. That is my friend and I’m so grateful to be a recipient.

xoxo

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

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

 

When Words Don’t Mean Enough

Thank-You-Photo-1

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