Sunday, August 30, 2015

The difficult reality...

Although Shannon and I see each other pretty much on a daily basis and are continuously talking, we never run out of things to talk about. Some days it's small talk or kid talk. Other times, it's working through the nonsense of this still, very new, diagnosis of mine. We will let you know when we have it all figured out; it may be a while.

Meanwhile, we have had some conversations about the fact that some people are having trouble really understanding what this Metastatic Breast Cancer (MBC) diagnosis means. So I asked my Shannon to do a post to explain and I'm happy she agreed. She has a gift for getting all the information she possibly can, comprehending it and presenting it honestly and clearly. Shannon acts as my filter. She reads the information and gives it to me in chunks I can mentally handle. Meanwhile, she is a wealth of information.

Today, she shares some of that wealth.

From Shannon:
The sea of support surrounding Linda is vast.  I am a witness to the daily cards, gifts, and messages in all varieties of love and support.  Family, old friends, new friends, neighbors, and acquaintances everywhere are asking about Linda and offering their thoughts and prayers.  Often times through these conversations, I get the feeling that many people don’t quite understand what this recent diagnosis means.  Linda and I were thinking that it might be a good idea to put something out there to help inform folks.

Although Linda’s breast cancer diagnosis and battle 3 ½ years ago was difficult, challenging, and certainly gave her (and many of us) a new perspective on life, this new journey is very different from the last.
Most times breast cancer is diagnosed, treated, and it ends.  The possibility of reoccurrence is discussed, but it seems unlikely and usually is.  Mainstream media tends to focus on stories of survivors who have fought their breast cancer battle and won and it ends there, with cancer free anniversary celebrations to follow.  There seems to be little public focus on the darker side of the pink ribbon;  the women who will never stop fighting.
Early Stage Breast Cancer is staged I, II, or III.  These stages mean that the cancer is confined (as best the doctors and surgeons can tell) to the breast tissue and the lymph nodes.  Linda’s original diagnosis in 2011 was considered Stage II. She went through a mastectomy, chemotherapy and radiation to rid her body of the cancer.

Metastatic Breast Cancer is very different from early stage breast cancer because it means that the cancer has traveled beyond the breast to other organs and tissue.  Metastatic Cancer is also called Stage IV or Advanced Breast Cancer.  Breast Cancer most commonly spreads or “metastasizes” to the bone, lungs, liver and brain.  It is a systemic disease meaning that it affects the patient’s entire body system.
Like Linda, despite doing all the right things, receiving excellent treatment, and going above and beyond what was recommended, a small percentage of women who are first diagnosed with early stage breast cancer will develop metastatic cancer at some point.  A woman with early stage BC worst fear is metastatic disease.  A woman with metastatic BC worst fear is a spread to the brain.  Linda’s cancer cells have traveled to her bones, lungs, and brain.  This means Linda’s breast cancer cells have made their way to these organs.  Linda’s cancer has nearly the same cellular makeup as it did in 2011.  We know this through a recently performed biopsy of the disease in her lung and surrounding tissue.  Linda still has Breast Cancer, but it is now Metastatic Breast Cancer.  Unlike early stage breast cancer which is curable, Metastatic Breast Cancer currently has no cure.  This is harsh, devastating news and was quite a blow to hear the doctor explain on those first few dark days.

The good news is that there are numerous treatment options now and many more coming down the pipeline.  The goal of treatment for Metastatic Breast Cancer is to weaken the cancer, prevent it from spreading, and manage side effects and symptoms, while maintaining the best quality of life for as long as possible.  While Metastatic Breast Cancer (MBC) has no cure, there is a possibility that patients can get to a point of NED, which stands for No Evidence of Disease.  This, of course, is our hope for Linda while we wait for a cure. 

Linda has made significant progress in just 2 1/2 months since her diagnosis.  She underwent 10 days of Whole Brain Radiation Therapy in late June to shrink the disease in her brain.  We recently learned that the radiation is working and the invaders in her brain are shrinking at a fast pace!  Linda has also started chemotherapy and is doing a stellar job at tolerating the highest dose possible to fight off the yuck stuff.

"Miracles happen to those who believe in them." 
 -Bernard Berenson

In the meantime healing is exhausting work for Linda.  She looks great and at times can seem very much herself (at least to others).  However, her body is working overtime not only fighting the disease, but also tolerating the intense medicine necessary to shrink the yuck, and coping with ever changing side effects and symptoms.  Those are just some of the physical tolls.  

The emotional toll is real and something I dare not attempt to describe.  Managing this disease will now be a large, active part of the rest of Linda’s life.  However much she confides in me, I will never know exactly what she is going through.  Although it is in my nature to try to fix this for her or take it away somehow, I know that is not possible.  I can only hope to offer as much love, support, and comfort as I am able to give.

Now that Linda has a treatment plan and is beginning to adjust to her new life, she has become the one guiding those closest to her through these rough uncharted seas.  This metastatic diagnosis is harsh, overwhelming, and very difficult for all of us to digest.  As those who love her go through a period of grieving for the way things used to be, without knowing it, Linda offers our greatest source of comfort by persevering through this scary time with honesty, hope, humor, and grace.  I know that I am not alone in saying that I am incredibly blessed to have her in my life.

Linda has always been an overachiever in the things that she believes in and is passionate about.  She certainly did not choose this new endeavor, but I believe in her and her ability to overcome the odds!  I believe in Faith.  I believe in Hope.  I believe in Miracles.  I believe in the power of love and prayer!  And I believe with all my heart in Linda!

"Faith is to believe what you do not see; the reward of this faith is to see what you believe"
-Saint Augustine

                              

                                                                              

Wednesday, August 26, 2015

Right Now...

Let me warn you. This post is deep. It is definitely not full of lollipops and rainbows, but what it will have is my raw feelings and honesty. If you're brave enough to deal with that, then I invite you to read on.

Although I think I'm doing a decent job with focusing on the moment and not looking too much past that, sometimes I'm caught off guard and "forced" beyond the moment. This most often happens when someone posts something on Facebook. It's hard to get away from the doom and gloom of the Big C; it seems every day there is a new story or obituary posted that tugs at the heartstrings. It seems we should at least feel the need to share as many success stories...it doesn't all have to be sad, all the time. 

However, being "forced" beyond the moment is not necessarily always a bad thing, because I think it's so very important to deal with all feelings, but it's so ridiculously hard, scary, and for me, very uncertain!

I watch a bit more television now as I go through the days where I'm dealing with the side effects of this nonsense. I try to keep it light, stay away from the Hallmark Channel, news and anything about the BIG C (that's probably the hardest). 

Last night I watched the wedding on "Little People, Big World", light and entertaining right? Unfortunately, it was not. It actually made me deeply sad thinking about the reality and truth about this disease I am living with. I started figuring out how many years before my kids finished elementary school and middle school, got their licenses, graduated high school and college and got married themselves. What will I be blessed to experience along side of them? The thought of missing out on any of their experiences, the good, the bad or the ugly brings me to tears and sometimes makes me want to scream in anger. 

I do my best not to get stuck there as that steals the "right now" moments, and those are quite valuable, especially these days. So, let's just talk about those.

Right now:

-I know the whole brain radiation is having a positive effect on destroying the yuck in my brain. 

-I am receiving high doses of chemotherapy and managing the side effects. My body is working to destroy the intruders.

-I am functioning (in some capacity) each day and managing my childrens' activities as best I can.

-We are eating meals together as often as we can.

-We watch more television together than we have in the past; my kiddos are psyched about that.

-I have competent and kind medical professionals doing everything they can to make me as healthy as possible.

-I feel supported and LOVED more than I ever have in my entire life.

-We are making daily memories, perhaps not always the ones I would hope for or imagine, but they are invaluable moments that can never being taken away.

Right now, in this moment, I am grateful for where I am on this journey because given the circumstances, I'm in the best place possible right now.



Yes, I have Stage IV Breast Cancer, but right now, in this moment, I am LIVING with it. I am doing all I can to beat the poop out of the intruders, keep the rest of my body in the best condition possible, and continue making moments on a daily basis. There are no guarantees what tomorrow will bring for any of us and yes, for me it's even more uncertain, but I refuse to get "stuck" there. That would be allowing the Big C to win and that, my friends, is not going to happen.

"All we have is right now, so make it count." 



Saturday, August 22, 2015

Thank you...

I feel that at some point in my life I was good at sending thank you notes. Recently, not so much. Does it still mean something if I have good intentions? I have handmade cards and my list of people to send them to, that's a start right? 

This new occupation of mine is time consuming and not to mention, EXHAUSTING! I have been so tired lately that it's been difficult to get anything done really. My kids were so excited to be couch potatoes for a day, and I earned some points for that one.

Anyway, in an attempt to make myself feel better, I decided to give you the opportunity to print out your own thank you's, from me to you. If you click on the following photos, you should be able to print at your leisure.

I like to use this one as a bookmark :) 

And click right on the image below to print as a 5x7 print. Consider these as gifts from me to you. I realize they are not as personal as an individual thank you, but truly from my heart and created with love.


"It's not happy people who are thankful, it's thankful people who are happy."

PS This is the first time I've attempted to have photos on my blog to print, so I'm not so sure I've even set it up correctly. I'd love some feedback to let me know and that way I can correct what I have to. Thanks again! 

Slow and steady...

I am currently on day 10 of my second cycle of chemotherapy pills. Overall, I am doing fine. I do have some side effects, but right now, they are what I would call manageable, and manageable we can do.

Last Saturday morning, I went for a brain MRI, primarily to see if there have been results of the whole brain radiation I had months ago. I have felt positive things happening with the left side of my body, so my thoughts for progress have been good. Yesterday, we did receive a telephone call confirming that the "brain MRI looks better". We have no other details, but we will take that. Slow and steady wins the race right? Problem is, I'm not generally a slow and steady person. I like to get it done ASAP.

This job is so hard, and I'm still mourning the loss of my old life, when I had enough energy to do everything I wanted to do without taking a three hour nap, when I could hop in my car and take a ride to Target, when I could drive my kids to get ice cream and when I had an appetite to eat just about anything. I try to remind myself that this part of my job is just the beginning and it is a temporary adjustment period. We are still trying to figure things out and the medicine is working hard right now to attack all those Big C invaders. One day, one minute at a time is really the only way. 

The sailing on this journey is not always smooth, but we're becoming more proficient navigators even in the rough seas.

Thursday we may get more specific information about the brain MRI, but for now, "looks better" is just fine. We will take it. 

Thanks once again for all the thoughts, prayers, and love. It's keeping me afloat for sure.

"Maybe you have to let go of who you were to become who you will be."

Monday, August 17, 2015

Becoming routine...

It's been over two months since I received the dreaded phone call. We (as in my family) have come a long way since that scary day. Although this unwelcome new life is not anything we asked for, we are starting to have a routine. We are all a bit more settled and are able to face each day with more optimism compared to that first month. 


We are still at the beginning of this new journey and learning as we go, especially with trying to figure out the effects of the medicines, but each day brings more strength and reassurance that together, we can indeed climb this mountain. 


Monday, August 10, 2015

Still walking...

I've received several inquiries about how I'm doing and I realize some of it is because of my lack of recent posting. I apologize for not getting back to everyone, but real life gets precedent.  And, sometimes I'm just not into writing. This is especially the case because I've been dealing with nausea monsters for over a week. My week off from meds started this past Thursday and I've been battling the nausea since the previous Sunday. It has been a discouraging week to say the least. I had few side effects, including nausea, while I was on the meds for the first two weeks, but truthfully, it's been worse during my week "off". Too much yuck! Because everything is still new, we are trying to figure this out. I'm optimistic tonight that relief and some answers are in my near future. 

Meanwhile, I'm doing my best to see this as a temporary problem that will come to an end, but I'm struggling. Being nauseous is a full-time job within my full-time job. It takes a great deal of energy and time to eat and even then, most times I still feel hungry because I'm struggling to find anything I can stomach. And we all know what can happen when one is hungry...it can make one grumpy.

Wah, wah...enough of that. I can't even stand listening to myself with this, but it's reality. I've had several miserable days. It's been so hard and stirs up the anger within me all over again. Many days, I'm not all that confident in believing I can do it, but then I'm told otherwise. So, I chug on and will do it, even if it means walking or crawling at a snail's pace. This is a battle, it's not going to be all smooth sailing, but one could hope. Basically the Big C sucks,and that is all.

Let me end this post by saying that when visiting with my oncologist last Thursday, she was quite pleased at how I was tolerating the medicine thus far. At that time, the side effects were minimal and the major ones that cause the primary concerns were under control. 

And tonight after speaking with another doctor, I'm confident my nausea is on its way to going away. 

I just finished eating some homemade soup and grapes and actually enjoyed it. This makes me very happy for sure.

Three positive points to wrap-up this very nauseating post. 


Thursday, July 30, 2015

Is it gone?

After people ask me, "How are you doing?", the second question they generally ask is "How are your kids doing?" 

Overall, I feel like they are doing fine. They are two different beings who are three years apart in age so they are also dealing with this situation very differently. Little Miss is 8. She was barely 5 the first time and I'm not sure she really understands the significance of what is going on. She also lacks the anxiety her brother has so most times she really seems to be acting like life is as it was just a couple of months ago.

E on the other hand is a bit more nervous. He was 8 the first time and now 11. I don't like to go into too much detail about my kiddos because it's their business and not mine to share. But, I will say he's super insightful and tends to withhold his questions, concerns and anxiety to himself. 

Yesterday he overheard some of our discussion about the reflex returning and some questions started coming. "What does that mean? Is that a good thing?" 
I was very happy he was actually asking the questions.

Today, I went to a quick doctor's appointment and when I got back, he ran to the car to ask, "Is it all gone, Mom?" UGH, another tear trigger for me. My sensitive and scared boy asking if the beast inside my body is gone. "No E, not yet, unfortunately it doesn't happen that fast." But, I'm working on it for sure. That's the plan...kick the beast to the curb!

We are honest with our children, but do not go into too much "adult" detail. Goodness, it's hard for us to process, never mind small children. We have also made sure they have other people they can talk to about this "yuck" and both have been very receptive and done very well with that resource. 

This is a complicated journey for all of us and each of us deals with it differently. Being a parent is tough work. Being a parent with the Big C just adds another layer to the already challenging job.  I wrote my feelings about my kiddos 3 years ago when the intruder entered unannounced. You can read it here.

Truthfully, I would say that my children having to deal with this is by far the thing that is the most stressful for me. It just seems so unfair for them. But, again, in an attempt to find a silver lining, I imagine that this journey will help build character and resilience in my children. They will be stronger, just like the rest of us, for it. I have faith that they really will be just fine!


"Persistence and resilience only come from having been given the chance to work though difficult problems."