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

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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

 

The Chemo Aftermath

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I got through my first chemo. Fortunately, I didn’t have to deal with the side effect mentioned above (side note: these cards are from the amazingly talented Emily McDowell. She created a line of Empathy cards specifically for cancer patients. Please check her out). In fact, I made out pretty well the first couple days. Tuesday and Wednesday were pretty good, thanks to Steroids in my pre-meds (pre-meds are medications given before the chemo that help to eliminate and/or reduce side effects of the chemo).

Thursday was a different story. I had the flu-like symptoms I was warned I might have. My fever topped out at somewhere 103.4, staying in the high 102s Thursday and most of Friday. By Saturday morning, my fever had broken, and while I was still experiencing chills, sweats, and body aches, I was able to attend a very special meeting via live stream.  I’m hugely relieved about that.

Hopefully this flu-type side effect will improve with each dose of chemo, but for this week, I expect Monday-Wednesday to be pretty good, and then to be down for the count from Thursday through Saturday. Knowing what to expect is more than half the battle. It helps me to schedule chores around the house early in the week with the Steroids kicked in, and then to be able to rest without feeling like I’ve accomplished nothing.

It may seem silly to read that I would be worried about chores or about accomplishing things, but trust me. Chemo makes a patient feel useless enough — she doesn’t need her self-imposed guilt to get out of control. Don’t get me wrong, I’m not steam cleaning my curtains or scrubbing my floors each week, but making sure the bathrooms get cleaned gives me some control over my out-of-control life.

I’d like to give a shout-out to one of my dearest friends — I’ve known her since I was about my son’s age. Our relationship grew out of writing and we now each have a blog. Stop on over at her blog Stand Up and Live Your Life. I am honored to be the subject of her most recent post, and I encourage you to read more.

I don’t know what this week will bring along with it, but if I can find humor in it, it will be shared. Thank you so much for the prayers, cards, flowers, texts, messages, and posts. I read each and every one, even if I don’t respond. I am making every effort to respond to each of you, so please bear with me.

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

Life is What Happens to You While You’re Busy Making Other Plans

I’ve been busy these last weeks … planning for my reconstructive surgery, revamping a section of our shop, generally feeling good about my new meds and how they were making me feel.

Things have really been coming together, and I’ve been feeling somewhat optimistic. Other than some digestive and intestinal issues, life has been feeling pretty great.

Until they weren’t. I went to the ER last Tuesday afternoon with stomach pain. Thinking I was constipated and that it was just gas, you can imagine my surprise when the nurse told me that the doctor was admitting me.

It turned out that my liver enzymes were high, as were some things having to do with my pancreas. I was jaundiced, and was going to have a procedure put a stent into a duct in my liver.

While pathology wasn’t completed before I was released from the hospital, we did know that I had a malignant mass in my pancreas. There was also discussion of lymph nodes being involved.

Yesterday, I met with my oncologist. He walked in and put his arm around me. I leaned my head on his shoulder, and he rested his head on mine. We sat like that for a few moments before he told me my complete diagnosis.

My breast cancer has metastasized and gone to my pancreas, where there is a mass. It has also spread to lymph nodes, but we don’t know how many yet. We also do not know if it has spread to other parts of my body yet. I get my scan done tomorrow, so I should know more by next week. It is considered stage 4.

Chemotherapy is the treatment I will be receiving beginning next week.It is a three week on, one week off schedule. I’m not sure how long it will continue. As of right now, I will be receiving Gemzar. Other chemos may be added depending on where else the cancer is located.

That is all we know as of right now.