Surviving Cancer

I have one friend who is facing a new diagnosis of lung cancer while another friend is nearing the end of her fight with ovarian cancer. It seems to be all around me. And I’m struggling with survivor’s guilt.

Wikipedia defines survivor’s guilt as “a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not.” Typically this refers to survivors of combat, terrorist attack, and natural disasters; and it can be a symptom of Post Traumatic Stress Disorder (PTSD). But it is also a common feeling that cancer survivors face.

While I consider myself a fighter and not a survivor per se, I, too, am struggling with this issue. Since I have been re-diagnosed, I’ve had three friends pass away from their cancer battles. One was five years younger than me. I continue to see her mother regularly, and feel guilty every time I do. I was diagnosed with cancer the first time before her, had it come back, and yet still outlived her.

Fortunately I’m not alone in this struggle. A simple Google search for “cancer patients and survivor’s guilt” brings up a number of articles on the topic, and how it can be mitigated. In fact, when I brought it up with my social worker, she reassured me that it is a very common feeling. She also encouraged me to do/remember several things to ease the guilt:

  • Acknowledge the feeling by writing it down; but then write down why feeling is unrealistic and why those feelings don’t help those grieving the loss of their loved ones.
  • Think of those who would be devastated by my loss.
  • My survival is a gift. Share it with my loved ones.
  • Live in honor of those whose lives were taken by cancer. I deserve every moment of my life, just as they did.

As I mentioned in my last post, my social worker also gave me a list of suggestions of things to do with my family in the time I have left. Some ideas include:

  • Schedule a day long photo shoot in our favorite spots around town or any other family favorite destination.  These photos would be used in a photobook/scrapbook that could be a beautiful dedication to my family. Include letters to each other in the book, nick names, funny stories, etc.
  • Ask each family member and friend to choose an activity or fun place they want to go with me alone and set dates for these things.
  • Write down all of the things I feel like I want/need to see in the world.
  • Think of my ultimate family vacation (there are organizations willing to cover some or all of the costs associated with this).
  • Record lots of videos — pictures are amazing, but hearing voices is so incredibly soothing when you are missing someone.
  • Make a quilt/scrap blanket together as a family.  It will be memories made while making it and then it will keep everyone warm physically and emotionally for years to come.
  • Make a Family Recipe Book. Cook family dishes together, or find new dishes and cook them as a family. Take pictures and write-up the recipes. It can be passed on to my son’s wife someday.

These are all amazing suggestions, and I plan on carrying out most — if not all — of them. It will keep me busy and focused on my family and dear friends, which is what makes me happiest. Will I still feel survivor’s guilt? Probably. I know myself and my depression, and this is likely something my depression would eat up like candy. But I’ll continue to fight against it as I make memories with my family and friends.

So tell me, if you had the opportunity to spend time with me, what would you want to do?

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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

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

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

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.

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