Thursday, October 1, 2015

The Whole Story...

My brain is feeling like a crowded mess of thoughts and feelings so I'm not even sure where to begin. I have no idea where this blog post is headed, but I can say that it may be interesting, kind of like this trek I'm experiencing now in my own life.

In case you were unaware, it's October 1, the month of pink, talk about mammograms, survivors, and early detection. 
For the past few years I haven't really been a fan of all the pink reminders everywhere for an entire month. Now, I'm afraid I've progressed to dreading it. Having Metastatic Breast Cancer certainly changes the ballgame. I no longer fit into the specific box that breast cancer awareness chooses to focus on.
Before my diagnosis in June, I didn't get it. I knew about MBC and the fear of getting it lurked in my mind always, however I never clearly understood. Just like anything else in life, in order to "get it", you have to experience it. There is so much more to the story of breast cancer as compared to what is commonly seen, much more "beyond the pink". 

Before, when I saw stories on TV and pink survivor shirts, I could relate, but now I tend to yell at the TV or mumble under my breath. My story did not end with surviving early stage breast cancer, and I can no longer relate to most of the stories we hear on TV. My story continues, as it does for an estimated 154,999 other Americans. There is so much more to the story, and although it's not easy or pretty, it still needs to be told. The most common thing I hear, read or see repeatedly is that "early detection is key"...UGH, gets me all fired up. Why?  Well, early detection does NOT necessarily prevent the cancer from metastasizing, as is the case with me. Yes, some only find it in a late stage, but not all, not me.

-The 30% of people who develop MBC includes people who did detect their breast cancer early. 
-You do not die from early stage breast cancer.
-Only 2% of the funds raised for breast cancer goes towards MBC, meanwhile 98% of those diagnosed with MBC will die from the disease.

As I watched a story on TV this morning, I was pleased to hear a doctor say this: 

"The survival rate is going up, even for 

those with metastatic disease."

First, thank you for mentioning MBC and second, whoop, whoop...hopeful news for sure!

And now, I think I'll get off my soapbox...for the present time. I'm not finished though. Something needs to be done, the word needs to be spread and more funds need to be allocated to MBC so a cure can be found.

Feel free to share this post and spread the word. It's human nature to shy away from the things that make us uncomfortable, but this is too important to do such a thing. Strength comes from doing hard things, talking about stuff that makes us cry, and facing our fears. So please read the hard stuff, educate yourself and help to inform others.

If you so wish to educate yourself more on this topic, here are some links for pages and blogs. 

Thanks for reading and Happy Pinktober.

Monday, September 28, 2015

Yes, you can help...

It's hard to believe it's been almost 2 weeks since my last post. I've already completed my 3rd cycle and I'm onto the 4th, day 4 of 14 to be exact. At my last appointment, my doctor was very pleased with the way I have been tolerating the highest dose of this oral chemotherapy pill. Although this is the case, my days are not always easy.  In fact I seem to be in a bad mood at the start of each new cycle. After having a week off and feeling quite ok for a couple of days, it's rough looking at 84 pills in the bottle and knowing I have to start all over again. But I'm doing it, and I have faith that the medicine is attacking the intruders with full force.

Monday I will have a day of scans (literally we will be there all day)to confirm that indeed the medicine is working. I will not have results until late next week, but I'll be sure to let everyone know what is happening.

My cousin gifted me with a super comfy Hope shirt this past weekend. I love the words on it and so I thought I'd share with you.


A little each day
Let hope be your guide in life. 
It shines through the toughest of trials and takes you to a better place.

Even in the darkest times, a glimmer of hope will keep you going. Hope in love, grace, and righteousness. In doing so, you could withstand all things and gain faith. You will transform into a person of great character who stands firm in all things that are good.  In all things that are for the truth. In all things that are patient. Hope will give you the strength to never give up and to never be hopeless. Always keep hope close to your heart and soul and one day hope will lead you to your true awesome destiny."

Yes, all that on one shirt. :)

With October right around the corner, would you be willing to take about 30 seconds to raise awareness for Metastatic Breast Cancer? Click on this link, sign up and on October 1, 2015 we can flood facebook and help to inform others about MBC. So many people have asked what they can do to help. This is what you can do...please, pretty please, and thank you! xo

Wednesday, September 16, 2015

One more day...

There are only 6 pills left in the bottle, which means I have one day left of cycle three, one more day before I have a week off from the chemotherapy pills. Saying I look forward to a break from the 2 weeks of taking the medicine is a bit of an understatement. Although the pills do not seem to have the same intense side effects as an infusion of chemotherapy, it's strong enough to attack the yuck, therefore it's also strong enough to knock me down a few notches. However, I'm grateful that the side effects continue to be manageable and I'm able to stay on the largest dose to tame the beast. And actually I have felt increasingly better with each cycle, thank goodness! This is definitely hard, but I also recognize that it could be worse.

I have also decided that on my first day off, I'm treating myself to something with sugar, something sweet. All other days, I avoid the sugar, as I don't need to give my body fuel to grow more yuck. Last time, I ate a delicious homemade muffin, I wonder what it will be this time. I'll let you know as I'm sure you'll all be waiting on the edge of your seats.

Monday, September 14, 2015

Frequently Asked Questions (FAQs)...

Along with the diagnosis of Metastatic Breast Cancer comes all sorts of questions from many.  I'm sure most people would like to ask me a few, but, most of the time, I'm not on the receiving end of these questions. Shannon, my Mom and Dad and Victor are the ones frequently asked questions, and sometimes the questions are not all that pleasant and really don't have answers.

In an attempt to give them a break from these "not so pleasant" questions, I will answer them here.

Q: Is she going back to work?

A: Right now I am not really able to return to work, but as far as returning in the future, I'm not sure what I'm going to do. I'm taking one day at a time. Right now my goal is to do everything I can to help the medicine do what it needs to do to tame the beast.

Q: When did she realize something was wrong.

 A: Well, this is a tough question. I really didn't fully believe something was wrong until perhaps a couple weeks before I was officially diagnosed. The biggest red flags were the left side of my body having tingling and numbness and I coughed up blood two times (although no one in the emergency room was concerned). I did have some other things that were off, and as a general rule for myself if they bother me for more than two weeks I go to the doctor for them, and I did. Meanwhile, I'm sure you would like me to tell you I had things going on and I ignored them for months...really, that's not the case. 

Q: Doesn't she get frequent scans?

Yes, I alternated between an MRI and a mammogram every 6 months, but it was only on my breast. It would only detect something in my breast and no where else. This was something I always worried about and questioned, because really, getting breast cancer in my breast was the least of my worries. What I did worry about has happened and it was not found until after I started having symptoms because it had traveled to my brain...very frustrating.

Q: Does she have brain cancer?

A. No, I do not have brain cancer. I have breast cancer that has spread (metastasized) throughout my body. Fortunately, breast cancer in the brain is actually easier to treat than brain cancer in the brain.

Q: How bad is it?

Well, it's bad enough, but, like most things in life, it could be worse. There is currently no cure for metastatic breast cancer, but it can be treated and that is what is happening now. I'm being treated primarily with oral chemotherapy and hoping with all my being that the yuck cells are being stopped in their tracks.

Q: What is her prognosis?

This, my friends, is probably one of the most common questions asked of my loved ones. It's also the one that is most upsetting and it's best not to ask, especially to those whom I  love. Goodness gracious, I know most are curious what the answer to this question is, but who really knows, not even the doctors do. Unlike in the movies, the doctors do not tell me how long I have. I am sure that upon request from me they could give me an estimated time, however, I'm not the least bit interested in posing that question and again, who really knows? Each person and each circumstance is so individual that it's nearly impossible to make such a prediction, nor is it anyone's job to do so.

So my friends, my prognosis is that I'm living life to its fullest each and every day, facing this head on and doing all that is possible to be a part of this Earth for as long as I can.

Thursday, September 10, 2015

Looking for hope and anchors

I've mentioned before that when you are faced with life's difficult challenges, it seems your senses are fine tuned and you seem to
 notice things that perhaps you had not seen in the past.  

When I was diagnosed back in June, the initial weeks were so very difficult. We searched for HOPE, and I clung to this verse.

"We have this thing called HOPE as an ANCHOR for the soul."
-Hebrews 6:19

Since then, I have this thing for anchors and what they represent. 

I found a lot of information about anchors from this website. I highlighted the primary symbolism in purple.

Early Origins of the Anchor Symbol

Originally, the anchor symbol was not used by those on the water, but actually people on land! During the early years of Christianity, Christians were under heavy persecution by the Romans. To show their religion to other practicing Christians under the watchful eye of the ruling people, they would wear anchor jewelry or even tattoo anchors on themselves. The anchor was seen as a symbol of strength as anchors hold down ships even in the stormiest of weather. It was also a popular symbol because of its close resemblance to the cross. Anchors were also used to mark safe houses for those seeking refuge from persecution.

Love for the Deep Blue Sea

Do you want to show your affinity with the sea? For many centuries, sea-faring mariners loved the anchor symbol. Everyone knows Popeye had an anchor tattoo on his arm! The anchor was a popular symbol because it was not only part of the ship, but because, just like Christians, sailors liked the connection this symbol had to stability and strength. Putting down an anchor also represented the safe end of a long journey. Today, many mariners, including the US Navy, coastguards, and even fishermen get anchor tattoos to show their fondness for the open water.

Anchor's Deeper Meaning

As repeatedly mentioned anchors are all about being strong and stable. No matter if you have sea legs or not, you can appreciate the deeper meaning of the anchor symbol - security, stability, and being grounded. It is a symbol demonstrating that a person is in tune with themselves and hold on to the values they believe in. The anchor can also represent a person who has been someone's rock through difficult times. For some people, the anchor represents always having a safe place to go home to. Especially for those who travel a lot, this symbol can have a very special meaning. Those who have had a tumultuous past, the anchor is a pledge to move on and have a better, brighter, grounded future. In this case, some people choose to wear a cracked or broken anchor, as a sign they are letting go of their inhibiting ways and moving forward.
These days I really tend to cling onto signs around me as they continue to fuel me and give me hope.

 I'm not sure if I'm just now noticing that there are so many anchors or have they become a recent fad? I feel like they are everywhere...I see them constantly.

My uncle posted this picture to my FaceBook wall yesterday, taken at the local park. We went for a look ourselves today. The men working there didn't even know where they came from and offered to let us take them.

We graciously declined. If I bought or collected everything with an anchor on it, well, I'd be on an episode of Hoarders.

But, I can take pictures and they don't take up that much room. So, I think it would be fun for you to join me and be on the lookout for anchors and when you find them, add the hashtag #lindasanchorsofhope on FaceBook On the Leap for Linda page and/or Instagram. It will be fun (for me anyway). Oh, and don't forget to share where you saw it.

Next anchor scavenger hunt. 

"Life's roughest storms prove the strength of our anchors."

Tuesday, September 8, 2015

Not a superhero

Amazing, strong, brave, fighter, rock star, superwoman...

These are just some of the words that people have used to describe me over the past 3 months.  They make me uncomfortable; it's not easy to really see myself as any of these things. I've also never been one who likes to be the center of attention and I'm not always good at accepting compliments. I'm working on it...I think we call this initiation by fire.

I simply feel like I am a 42 year old woman dealt a crappy hand and I'm doing what I have to do to survive and carry on with my life. In fact, sometimes, I don't even feel like I'm doing it well. The people closest to me deal with my grouchy self and still come back for more. The whole thing is still a learning process.

I suppose there are some things I am choosing to do, like get up out of bed each morning, but really, I feel like most, given this deal, would do the same. I certainly don't feel like a superhero.

I heard this song on Pandora the other day and some of the lyrics hit me for sure.
I feel incredibly grateful to have the love and support from everyone and I'm working on internalizing and accepting the adjectives you are using to describe and encourage me. It is good for me. Thank you.

Saturday, September 5, 2015

Cycle three...

I started my third cycle of oral chemotherapy medication on Friday after confirming on Thursday that my Potassium had improved. I'm still on the highest dose I can take and I'm able to manage the side effects. This is a good thing because there is a greater chance of the medicine attacking more yuck on this highest dose. I will be on this medication and dose for as long as possible, for as long as it is effective in caging the tiger and for as long as my side effects stay manageable and my body can tolerate it. This is a life long gig. I will have scans in October to see the progress.

As I mentioned, my side effects are manageable and I'm very grateful that I am responding well to the treatment. The side effects are really a small price to pay while the medicine works to help my body destroy the yuck.

That being said, I do still have side effects. They are primarily exhausting and annoying!

I continue to be very tired, both physically and mentally. My brain becomes easily exhausted after short periods of time and I'm trying to take short daily naps to rest. The idealistic me wakes up in the morning ready to conquer the world and then 60 minutes later I need a nap just from thinking about what I'm going to do. My stomach is often funky, not always feeling all that great, but still better than it was during my first cycle, so small progress. I also have to be on top of a possible problem with my feet and hands, where blisters can form, causing major issues; so far it's been minimal. I'm achy quite a bit, but again, it's something I'm able to manage. 

All these side effects are super annoying. It's not fun to feel yucky, or not to have the energy to complete a task without taking breaks in between. Overall, it's most frustrating not to feel healthy! As much as I'd like to ignore the effects of this disease on my body, I can not. The reality is they are there and I need to do what I can to live through the annoyance of it all.

In the meantime, I'm realizing that I can do things in small doses. We can't plan for full day activities, but an hour of something here and there can work and it's good for the soul for sure.