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

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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.

Lost in Tennessee

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Though the hurricane did not directly hit us, we decided to evacuate anyway. The kiddo has a panic attack when he hears the word “tornado,” so we thought it best to make sure he felt safe. Besides school was cancelled until Wednesday, so we didn’t need to worry about taking him out.

We left Saturday morning and arrived late afternoon. The drive itself was not particularly awful. The house was fabulous — three stories with a hot tub, foosball table, pool table, and a mini golf arcade game. We checked things out, and Allen and Brian played a game with pool while I did some writing.

For those of you who are just joining my blog, I’m a cancer survivor and I had a failed implant (became exposed got infected, had to be removed). Therefore I have prosthetics. While my right implant is still in tact, I have prosthetics for both breasts to ensure symmetry.

Prosthetic breasts are rather heavy and I find them fairly uncomfortable, especially by the end of the day. Typically, once I am home and know I won’t be going out, they come off. And if I don’t have to wear them, I usually don’t. Anyway, by around 4:30 or 5:00 I’m done with them. Saturday evening was no different.

After writing, I joined the boys around the pool table. We ate dinner and enjoyed the hot tub. In the meantime, hubs had gotten a bit of a cold and I had been bitten by the writing bug. The next morning we just hung out around the house. Hubby was feeling miserable and didn’t want to do anything. Kiddo was content on his iPad and I spent the day writing.

By Monday, though, we were ready to explore. Upon our arrival Saturday, we had seen a wax museum with King Kong on the outside of the building. Kiddo was intrigued and was unable to quite comprehend that the building itself was not wax, but the figures inside were.

It was while getting ready that I realized I’d lost my boobs. I could not find the bra I’d worn on Saturday that contained them. Though my insurance covered the expense of the prosthetics, I was pretty sure that any additional pair would need to be paid for out-of-pocket. So this wasn’t like just losing an undergarment. This was like losing a $200 dress. We were worried, but I was sure they’d turn up before we left the next day.

Side note — I do go out occasionally without wearing my prosthetics. I figured I didn’t know anyone in Tennessee so I didn’t really care that I was lopsided. And I really just wanted to get the wax museum over with so I could get back to writing.

However, by that evening Hubs and I were both getting pretty worried. Like I mentioned, these suckers aren’t cheap. Saturday morning, we searched — almost in a panic — but came up empty. I swore that I had taken my bra off as soon as we arrived Saturday, but Hubs asked if I’d even worn them Saturday. I wasn’t sure.

How does one lose her boobs in a cabin in Tennessee?

I called my parents at around 7:30 a.m. Here’s a conversation I never thought I’d have with my father:

“Um hey dad, could you go to my house and see if my boobs are there?” But that’s exactly what I said.

Being the good father that he is. He got dressed at 7:30 — without having had his coffee — and drove over to our house to look for his daughter’s prosthetic boobs. About 20 minutes later he called:

“One lumpy bra located.” he said. Evidently in my infinite wisdom, I had thought “why wear them all day in the car when they’re uncomfortable?” while at the same time packing several bras.

I continue t blame chemo for my memory issues.

Hope this made you laugh.

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

Folly Beach, SC

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Labor Day weekend always unofficially marks the end of Summer. Even though it’s still ridiculously hot outside, the kid has been back in school for two weeks, and it’s still Hurricane season. We decided to celebrate this transition by spending a long weekend in Folly Beach.

We hadn’t been before, and really didn’t know what to expect. Dad rented a great condo across the street from the ocean, and though we had a parking lot in front of us, we could hear the ocean from our balcony. It was immediately relaxing.

By the first evening, I knew that it was going to be a fabulous getaway.

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In preparation for reading on the beach, Mom and I had gone to the bookstore and gotten two books each. I don’t remember the last time I read an actual paper book. It was amazing!

I read Liane Moriarty’s Truly Madly Guilty first. Hubby and I had watched Big Little Lies, based on the book by the same name, and really enjoyed it. So this seemed like a good choice. At over 400 pages, I was concerned it would take me awhile to finish it; but it was so compelling that I finished in around 24 hours. This is how I read — I binge, ignoring most of my surroundings. My husband refers to himself as a book widower during these super-concentrated times. It’s why I rarely read books during my daily life. Verdict on the book: a compelling page-turner. Great story with lots of unexpected surprises. The best part — Moriarty wraps up the story in a satisfying manner — so I was not left mourning the characters, wondering what happened next in their lives.

The second book I read is The Woman in Cabin Ten by Ruth Ware. A mystery, the story moved quickly, albeit somewhat predictably. I recommend it as a fun and quick read. At this point, I was out of books, so I raided the library in the condo and found James Patterson’s Along Came a Spider. While I was reluctant, as I kind of see James Patterson as a formulaic writer, I thoroughly enjoyed the psychological mystery.

But I digress. While I enjoyed reading immensely, and it contributed to one of the most enjoyable and relaxing getaways I’ve had, the real highlight was spending time on the beach with family.

Because of the chemo and radiation, I’ve avoided the beach, as I sunburn easily. But I have missed it so much! We brought beach umbrellas for the trip, and I was able to sit in the shade with my feet in the sand. The lovely cool breeze and the sound of the ocean waves melted away all the stresses of daily life.

Watching my son, shy at first, but then venturing into the ocean up to his chest and jumping along with the waves was one of the happiest things I’ve seen lately. In fact, the kiddo didn’t complain about anything we did. It’s the first trip we’ve taken in recent years where he enjoyed every minute.

The other highlight of our getaway was a boat ride to Morris Island. We went with Adventure Harbor Tours and were not disappointed. Great ride out to the island, with some pauses to watch dolphins, and some light Charleston history. Morris Island itself is an uninhabited island and is known for it’s excellent shells and sharks’ teeth. I don’t know that it quite lived up to the hype, but we all found some neat shells and some sharks’ teeth. I would definitely recommend the trip.

Folly Beach attracts a younger crowd, so we did have to suffer through a pretty loud party Sunday night. We will keep the timing in mind the next time we go.

Surf and souvenir shops line the town’s Center Street (their Main Street), eliminating the desire (for us, at least) to do any shopping. Open air restaurants are aplenty, but nothing out of this world. That said, I do recommend Taco Boy for lunch or dinner and Rita’s for breakfast. It’s a very walkable town, which we thoroughly enjoyed. We only had to use the car to drive to the Morris Island boat trip.

We’ve decided that Folly Beach is our new beach destination. The beach itself is beautiful; the town is easy to navigate and walking-friendly. The oceanfront rental opportunities abound. We all slept better than we have in a long time, and felt completely relaxed at the end of the trip.

I know this is not one of my typical posts, so hang in there. I’ll be writing one next.

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