Another one bites the dust

Life with cancer is like an emotional roller coaster with twists and turns where you least expect them. This week has been especially emotional and challenging. I think we have probably been through worse, but some days have just been harder than others. Tuesday was a chemo day and included an appointment to see my oncologist for an exam. It also included a radiation simulation appointment down town at the hospital to map out the radiation plan, but I should go back a few days. Over the weekend I had a scheduled MRI for my right arm to help assist with the planned simulation. I noticed a pain in my chest during the day leading up to the MRI. I chalked it up to a little anxiety going into the 1.5 hour scan. The pain continued and was growing more painful with each day. By Tuesday and my scheduled appointment, the pain was high in the 8-10 range. I knew deep down that something was wrong. I have learned to recognize some of the tugs my body gives. Plus pain that comes quickly and gains momentum quickly is never a good sign. I think both Steve and I had a feeling Tuesday would be a hard day and Steve took off work to go with me without me really coming out and asking him. We both had that “sense”.

We met with Dr F and the exam started pretty routinely. We talked about various side effects from chemo, discussed the current plan to treat the right arm with radiation, and just had general discussions. The routine of these exams are discussions/concerns, physical exam, then ends with discussion/concerns and action plan. When the Dr came back in for the second discussion he laid it all out there.

1. The Chemo isn’t working and we will not be treating you today
2. The pain in the clavicle/chest is cancer and it is active (location confirmed on pet scan)
3. Our new focus is getting radiation lined up and it would include the right arm and the clavicle (if we could get in touch with the radiation oncologist before the afternoon simulation, which he did and she hustled)
4. Increased my long acting pain medicine by significant mcgs and my breakthrough pain meds

It was just very matter of fact, but with the normal compassionate way of all the tough conversations we have had with Dr F. We are still waiting on the geonomic testing but there isn’t a plan to try another chemo right now. Have we hit the end of the road with chemo? Only time and geonomic testing will tell.

It’s always hard to go into a scheduled treatment to learn that there will not be a treatment. It’s such a letdown because emotionally you have prepared for that day and the days ahead with side effects. In the back of your mind you know that lack of treatment means cancer is likely to keep progressing with no end in sight. A lot of emotions and anxiety seem to follow.

Ironically, I had just mentioned to Steve a few weeks ago at the start of this new chemo, that I would eventually get to a point where I would say “no more chemo’s”! I wasn’t sure when that time would come but it’s so hard to yo-yo from chemo to chemo, hoping for stabilization or better yet regression. At this point I have tried several chemo’s and only one combo gave me “stable” scans. As I processed the latest information over the past week I realized that Dr F made the decision to stop chemo for me. I didn’t have to make it on my own. A blessing in disguise perhaps?

I have felt cancer moving around my rib cage for several days. I don’t know if it’s normal to be able to feel your own cancer. I don’t even know how to describe the feeling besides it being painful, it is also a strange sensation that I get. Maybe it’s because I am so thin or I am more open to feeling those tugs in the body. I can normally point right to a tumor that is causing pain. I will point to a place and say, “here is the pain” and they will confirm on the PET and say,” yup there is a tumor(s) right there”. I am so grateful for pain management; I can’t even begin to imagine the pain in my body without it. I went months without being able to control the pain and those were some of my worst months. Now that we have some control I worry that I am missing painful places that are signs of advancement or places that may benefit with a hit of radiation. It’s a catch 22. Either way, cancer isn’t slowing down at this point. The bigger issue is my quality of life which includes feeling free of pain.

It has been kind of an eye opening week. I am not sure what I was looking for in terms of comfort. There really isn’t anything anyone can say or do to make this situation better. We can’t change it into rainbows and butterflies. But I felt a little let down and I felt more alone and alienated then I have in a while. I was not really being mentally positive myself which is part of the problem. Steve was surprisingly positive after my appointment while I was being negative. The only positive thing I expressed was that “at least my hair would grow back”. Nothing anyone said made me feel better. I keep thinking, “do you even realize what this means”? Then something occurred to me. Why was I expecting anyone to have the right words? Why was I putting that responsibility onto others? People really don’t know what to do or say. I think sometimes I just need to hear “this just sucks” or “screw cancer” and less of “you are so strong” or “you got this”. For me cancer is at times my entire life, no matter how positive I am or how busy I make myself. But at the end of the day, I can choose to be happy despite my situation or I can choose to cry and be angry. I probably need a healthy balance of both happy and sad. What people say to me or in some cases don’t say (the lack of communication/empathy) isn’t important when you know they love and support you no matter what. Now, for the negative people who are insensitive, cause drama and/or don’t truly care about you, good riddance and good bye to them!       

              

PS: Today we find ourselves with a beautiful snow day. It snowed all night and we woke up to a blanket of white snow, perfect for snow balls. Such an amazing day to snuggle in and watch the snow fall, oh and cheer on the EAGLES!! We are actually a Ravens family but we both grew up with the Eagles so we will be cheering for them today. In all honesty I will most likely be watching Hallmark movies and Steve will be watching the games :o) 

Enjoy the day where ever you might be!! Xoxo  

Happy New Year!!!!

Wow, another year has come and gone. In the busy time between November and December with advancing cancer, new chemo, new side effects, hair loss and just holiday life, the new year was suddenly here. I even helped get a group of friends together for a NYE celebration at an amazing venue and it still seemed to come out of nowhere! Holy crap its NYE ahhhhhh. 

I love NY’s more every year. Mainly because I am still here to ring in another new year. But I always feel like it’s a clean slate and a fresh start. It’s a time to take a look at what’s happening in my life and around me. It’s a time to re-focus and commit to something new, good and positive. I am not making resolutions per say this year. But I do have some goals:

1.      be more present in everyday

2.      meditate regularly

3.      stretch my body daily

4.      STOP procrastinating (its become an issue)

5.      Take a deep breaths and count 1, 2, 3 before reacting

We also started a daily gratitude/thankfulness jar. Every day we each write one thing we are thankful for in that day. When we all three have dinner together we also do a “what’s your new and good”. What new or good thing happened today?  We started that last year and it’s been fun and a great positive why to end the day and encourage dinner conversations. I definitely want to keep this in the regular.

I would love to hear what you goals or resolutions are. Comment below!!   

Quick Cancer Update:

This latest chemo is going “ok”. After the first treatment my ANC really took a hit which required a two week break. They reduced the dose by 50% and I was able to get treatment for the two weeks in a row as planned. I am on an off week this week and then hopefully we are able to do another two week plan. I feel pretty run down after treatment. But it took me some time to get use to the previous drug and for my body to adjust. I am hoping this will be similar and my body will adj. I have been trying to really listen to my body and rest when I need to which is more often. The good news is nausea isn’t nearly as bad as the last drugs. It’s more of an issue with fatigue and low energy.  

I am having a newer issue with my right shoulder/humerus which does have cancer in the bone. I started having pain right after my lymph node surgery back in Nov. I think the position they put my arm in during surgery really did some damage. It’s been well over a month and I am still in quite a lot of pain in this area. I have and MRI scheduled and then a radiation simulation planned. We are hopeful radiation to the area will reduce the pain and return some of the mobility lost. This was a good reminder for me to be really vocal about my bones being compromised. I sometimes just assume everyone at Hopkins has read the details of my stage 4 cancer and know the extent within the bones. I need to be better, especially when I am being put under, to tell the entire team in the OR to be careful with placement. I can easily sustain bone fractures if we are not careful. I learned this lesson learned the hard, but lesson learned. The radiation treatment on this area should be easy with little issues. I already had similar treatments on the left arm so I know what to expect. I have an AMAZING radiation oncologist who is just such an amazing person. I love her and all the staff at Greenspring. She is on top of my case and is ready to take action with limited notice. I had not seen her in probably 10 months but she greeted me with a huge hug and genuine tears. Although we were there to talk about my shoulder she had read my latest brain scan and was so happy to see no cancer progression. Her brain radiation plan saved my life and I know 100% I would not be here in this capacity today without it. Yes, it took a big toll and was a challenge to recover, but there is no doubt her plan was effective for my cancer and my quality of life. I am so thankful and grateful to her for challenging me on my reservations because I was not going to go through with brain radiation. It is so important to have a good team when dealing with cancer regardless of what stage you may be.  

I hope everyone had a great holiday and a very happy new year. I had a great time with friends ringing in the New Year Monday night. We danced and celebrated the end of 2018 and the start of 2019. There were some tears and high emotions as we struck midnight. Why is the song “Auld Lang Syne” so emotional? It sure hit my heart strings and I had a hard time keeping it together. Steve accidentally caught a video of me and my bestie Erin right at that time….it’s a tear jerker.      

It’s going to be an amazing year; I can just feel it in my bones!! Embrace this year and make it the year you do something great. Do something good, positive and rewarding for yourself!! Live the life you were meant to live, love and embrace the ones you care about every day!  

Shine Brightly, Live Happily & Smile!

Erin   

Pink Hair for NYE

 

Is 3rd time a charm? Bald yet again!

Hi Friends,

I mentioned in my last post that this new chemo would cause hair thinning/loss. I was really hoping to get through the holidays with hair but unfortunately that wasn’t going to happen. It started falling out around day 14 after only one treatment. Baldness caused from treatment isn’t unusual but for all the other stage 4 chemo’s I have tried this is the 1^st to cause hair loss.  I lost my hair back in 2012 from chemo, then in 2017 from brain radiation and now 2018 from chemo. We have been joking about my latest hair loss saying well maybe 3 times is a charm. I mean how many times does one girl have to go through hair falling out by the handful, forced to shave, wear wigs and head wraps? Two Christmas in a row being bald. It definitely does not really seem fair at all. But living your life with cancer and the treatment changes isn’t fair either right?

It’s one of the hardest parts of treatment for a lot of people. Hair can be very personal and a big part of what makes you feel like you. Our hair can define us (or we think it does) and we rely on our hair style for pictures and feelings of self-worth. Everyone’s journey with hair loss is different. Some survivors choose to embrace being bald while others rely on wigs or hats to keep a “normal” feeling to a life changing circumstance. I was never super attached to my hair. Which is strange because I changed my hair a lot. I had amazing curly hair prior to cancer and I would wear it curly or straight, short or long. Whatever I was feeling. When I lost my hair in 2012 I had a baby to take care of and I never cared for my wigs. Although I did have a pretty bad reaction from someone I really cared about that made the emotional side of my hair loss harder. But that’s a story for another day ;0) I wore my wigs maybe two times back then. I chose to just embrace being bald. I got a lot of inspiration from Bald is Beautiful to just rock it. It would only be a temporary side effect and I would have my hair back by the end of the year.

In 2017 I had a similar mindset going in. I wore wigs a few times but not many. Char struggled a little and really loved it when I would wear them. I think it made me look less sick and she could feel normal in public with me. You definitely get staring and second glances when you go out in public bald. This time around I tried to make it a girls night at the spa and have champagne and a head shaving thing. Schedules didn’t really work out and it is hard to plan because you don’t know when the hair will start falling out or how long you can stand it before you are ready to shave. So we ended up doing a quick visit to the barber shop for a shave on Dec 15th. It was a little frustrating because the girl who did it just didn’t want to take it all down and kept doing different guard levels and I kept saying more, still more, ok keep going. Steve actually took it down more a few days later. The whole thing was super emotional this time around. I am not sure what was different. I had done research on the cold caps this time and had decided against it for various reasons. I think I just thought about it more than before this time around. And in all the tube videos I watched the girls were just so determined not the have hair loss they endured hours wearing and switching out the cold caps. It just wasn’t for me, but I would love to hear from people who actually did this and had success. I get cold enough as it is, I can’t imagine how uncomfortable it is to have those caps on.  By the time we were done at the barber shop Char, Steve and I were in tears. Char was so sweet, she said “It’s ok it will grow back”. Later I asked her if she minded me being bald and she said “you are my mommy and I love you”. Just simple and matter of fact! Because we don’t know how long this chemo will work I could be bald for a long time and there isn’t really an end date. Once we stop this treatment drug it will take six months to a year to grow my hair back. Maybe that is why this time it was just a little harder on me than before. It is what it is and just par of the course in this life with stage 4 breast cancer.

Xoxo    

  

The saga of being bald

Year 2012

Christmas 2017

Dec 15th 2018

Christmas 2018

Cancer is Progressing

Hi Y'all,

Its time for an update! And I so wish I had better news to share with all of you. I have been procrastinating in writing this post because I get tired of the bad news and so want to share happy news! But it's time for me to come clean.

A few weeks before Thanksgiving I had a MRI of my L spine and pelvis. I had been having some breakthrough pain and had been increasing my pain meds. The scan showed some abnormalities which initially were thought to be osteonecrosis, which is the death of bone tissue due to lack of blood supply. This could have been caused by radiation to that bone, but it was unclear what had caused this to happen. A pet scan was ordered for 10/31 and on 11/7 Dr Fetting called with the news.  Steve & I went in to meet with him later that same day and the news was extremely upsetting. The scan when compared to May 2018 (6 months) showed extensive growth and new cancer in the spine, pelvis, ribs, lymph-nodes and a new spot on the lung. All other organs remain cancer free, but the new spot on the lung is definitely of concern. We were beyond devastated since May's scan had shown such positive results and no cancer growth. We were finally breathing again and hopeful for continued "no growth" and counting on the effectiveness of treatment prior to this news.  The carboplatin/olaparib combination worked for about 6-9 months. But it has stopped being effective and my cancer has gained the upper hand once again. It took a couple weeks to get things in order with scans and tests. My last combo of carbio/olap was on 10/23 and a new chemo called Eribulin started on 11/27 and boy did it hit me hard! My anc neutrophil blood counts went from 2,250 on the chemo day to 370 on 12/4 (had to skip chemo) to 140 on 12/6. I have been neutropenic for over a week. Last time my ANC was this low I spent a week in the hospital. So far we have stayed home and I am trying my best to stay germ free. This is the worst time of the year to have such low neutrophils. With all the holiday shopping every place I go is crowded with people. We had a little family trip planned for last weekend to visit NY and see the lights. That unfortunately didn't happen since my counts were so low. I am hoping my counts are on the up and up this week, but I am not sure. Based on how I feel they seem to be getting better. They will be checked next week and hopefully we will be able to do another treatment of eribulin. They are working on the right dose that will keep my counts in a healthy range while still being effective to stop the cancer from growing further. The dose on 11/27 was too strong since it caused such a huge quick decrease in my ANC. I also had a updated brain scan on 11/8 which didn't show any new or advancing cancer in the brain or along the lining!!! This is GREAT news!

On 11/19 I had six lymph-nodes removed from my neck for genomic testing. I am still waiting on the results to be explained by my doctor. More to come on that soon hopefully. That may change the course of treatment.

Although I was upset the chemo combo stopped working, I am so thankful it worked for the fluid around the lungs which continues to stay at bay (those tubes and draining procedures where no fun). The cancer on my skin also dissipated and continues to be invisible to the eye.

This holiday season has been great so far. I was in pretty bad shape this time last year. Between Nov and Dec 2017 I was having daily brain radiation treatments. It was pretty debilitating. I have such a limited memory of this time last year, just bits and pieces of memories come through. I am so grateful to be aware and able to enjoy this holiday season. Decorating the house has been so fun and its very festive at home. I think I have watched over a thousand holiday Hallmark movies so far this  year ;0)

Although the news of progression is disappointing, scary and upsetting we have had time to progress the news and come to terms with it as best we can. It wasn't easy to deal with and emotions were really high. A new chemo means new side effects and it will take some time for my body to adj to the latest poison we are putting it through. This new chemo also causes hair thinning/loss which aside from brain radiation, hair loss hasn't been a side effect of all the other chemo's I have tried for stage 4. I estimate I will be loosing my hair in a few more weeks. I already have that scalp tingling/tender feeling after just the first treatment so it won't be much longer before I have a third head shaving session.

Thank you so much for your continued support and prayers. Pray for my counts to rebound so that we can continue with treatments next week. The schedule will be once a week for 2 weeks then 1 week break.

I am so grateful for the time I have with friends and family. Despite the bad days I have, I am having some really great days. Energy is low more often then not but I keep pushing on. I am trying to really listen to what my body needs and resting when I need to. Its so easy to push beyond what I should and then realize I am totally exhausted. Its a day to day, week to week assessment.

So much love from me to you and if I don't write again before the holidays please have an amazing blessed Christmas. Hug your family members and friends. Take a minute to really take in all the parties and get together's and be present in the moment. Life changes in the blink of an eye so embrace your people and make sure they know your love for them this holiday season.

Lots of love & merry Christmas - Erin

Support from friends - 3 days after we learned about the progression 

Happy Thanksgiving

Visit to Santa #1 (festival of trees)

Visit and breakfast with Santa #2

Finding the perfect tree

Letters to Santa

   

Char's drawlings after we learned about the progression

 although we have not talked to her about it she must of sensed 

on some level and started drawling our family

Practicing Mindfulness & Embracing Yourself

When you are diagnosed with cancer I think most of us think about the past and how we have missed out on things by not being “present” and “In the moment”. Sometimes life just gets so busy or crazy and you get into auto pilot mode and just push through. It’s kind of like that 1st year of your child’s life that goes by so fast it’s a blur and you thank God for all the photo’s you took so you can look back and remember. But you forget how all the baby snuggles felt or how tired you were during wakeful nights of teething or tummy aches. Those moments just go by so quickly and life really moves fast. Remember being young and just wishing the time away so that you could be older, get your drivers license, date someone, drink with friends, party, go to college, graduate, go to clubs, get married, have kids, land that awesome job. The list gets longer and longer, in no particular order. And then all those moments happen and you forget the details and you take a pause and its 30+ years later. Where did life go? I think I barrel rolled through life and have now stopped at the ripe old age of 37 saying holy shit where has time gone and oh by the way, I have cancer. Not to mention I no longer have a career in my field of profession. With cancer life is like a double sided sword. You want to remember all those moments of the past, be present in the NOW and experience all the moments of the future before Cancer takes your life and you can no longer experience the “moments”. This is the struggle!

On occasion I attend a stage 4 breast cancer support group meeting for young survivors. I don’t go every month but try to go when I can. At one of the meetings the topic was meditation and they were giving out a book called “being well (even when you are sick) mindfulness practices for people with cancer and other serious illnesses by Elana Rosenbaum. I had already read about how beneficial meditation could be for stress and anxiety and I had down loaded the “Head Space” free app on my phone so I knew the very basics. This book had me hooked and I continued to read other books by Elana Rosenbaum and Jon Kabat-Zinn about mindfulness and meditation. Amazing writers who really explain the interworking’s of meditation from starting, staying the course and making it apart of your everyday. Back ground on me and books….. I highlight, underline, turn down pages, write in the margins and pretty much take over the written page when something really resonates with me.

Some of my favorite quotes from Being well by Elana:

“Mindfulness creates harmony and brings joy – if we also allow ourselves to experience sadness”

‘My motto became “Yes to life and all that’s in it.” – YES to embracing life for sure!!

“To remain balances, we’re constantly adjusting our position, shifting gears, and altering your pace and speed.”

Each time you catch yourself flying into the arms of fear and are willing to examine it, respect its power, and breathe with it, you are letting it move around you like molecules of air”.

“Our task in being mindful is to create a foundation that is stable and calm, so our dream is reality experienced every day and throughout the day, moment by moment.”

“Each breath that we feel and follow as it enters and leaves the body is a reminder of our aliveness and the preciousness of each moment.”

“Change can happen in a flash, but acceptance is a process”.

“How often do we worry about a future that may never happen instead of the ground beneath our feet?”

“On a moment-to-moment basis, reality is manageable; staying in my head and imagining what could happen is not”.

Just like all things in life, it’s hard to make new habits that last. Taking 10 minutes out of your day to sit quietly with your thoughts with no judgement isn’t easy. I always thought meditation was to be quiet and control your thoughts. This is totally wrong and of course hard if not totally impossible to actually do. Your thoughts are your thoughts, they come and they go. Maybe they even linger. Your past is your past, it happened and it’s over. We all have issues and things that have happened in our past that lay on us. Unresolved issues with others, family traumas, life’s disappointments/failures, maybe fear of cancer or illness….. you name it. We ALL have them!

I really love the time and space I make to sit and be quite. I personally prefer guided meditations so my thoughts can be pulled back when they start to stray. I have found a great deal of peace in breathing and listening to my breath. I often feel the need to take deep and cleansing breaths during all kinds of situations and moments. Kind of like a re-set, I got this, focusing on the now not the later, slow down and just breathing. I found that just being mindful of breathing has been an amazing discovery. I actually held my breath until I had to take a breath. I am not sure if this is normal for everyone, but I feel like I never breathed correctly before.

My anxiety can be off the hook. Fear is the most debilitating feeling in your life. I come from a family where anxiety is a real issue, especially social anxiety. I think I evolved to just push through and push those feelings of anxiety down deep inside. I never learned to cope or deal with stress and anxiety in a healthy way. I always just pushed through the feelings and ignored them. Most people see me as outgoing, energetic (sometimes hyper), talkative and happy. The hyper part definitely was true (not sure I have much hype these days) and the happiness!! I have truly been a happy and positive person throughout most of my adult life, aside from a handful of personal experiences where I was truly unhappy with how things were going or the way they were turning out (at least I think I have been happy ;o) I embrace change and I LOVE to love people and pass out HUGs!!!! Don’t get me wrong, I am for sure not “happy” all the time, just ask Steve. My smile can be deceiving sometimes and I smile a lot. This in all honesty is part of my problem. To quote my girl tribe and at times my Oncologist have said something to the effect of, “its ok to not be ok, and it’s ok to be selfish and think about yourself and complain if you need too”. I totally say that I am “ok” more often then I should. Can you be a “happy” person who makes friends, has a fun time, but at the same time has anxiety??? Absofreekinglutly you can. It all comes down to how you handle the pressure, and if you let it control what you do. I never let it stop me from having a fun time or meeting new people. I just didn’t address it at all. I do not recommend you do this if you have anxiety. Deal with it now, don’t wait till it overtakes you 30 some years later.

Somehow I survived 2012 and 2013 without major anxiety melt downs. I remember my Oncologist offering to give me medication but I kept saying No and that I was ok. Again, I think I just pushed through the same way I did in all the years prior. I focused on that light at the end of the tunnel that was the end of treatment. However, I no longer have the capacity in my body to push it down anymore. Nor do I have a “light” that signifies end in treatment. My anxiety now will come out of no wear, and when it does it is dark and debilitating. It’s almost like a silent, crushing panic attach. It is normally not situational or social. Then the tears come and for someone who always pushes down their emotions it’s hard to deal with that part of myself also. Endless scans which have historically not been super positive and on-going chemo days naturally cause some anxiety. I think I manage those times ok, although maybe I am pushing that down and do not come to terms with the “feels” like I should. This may in turn create these out of the blue “episodes” I get. But, the time has COME for me to deal with it and that is where meditation has saved me to a certain extent (caveat…..when I am consistent).

When I started meditating past experiences surfaced which is totally normal. But you come face to face with yourself and begin to see how things were in the past, how they are now and how much better they could be in the future. It takes time and patience to see the benefits. You have to make time for it and really “practice it” to get into the right place. And eventually you get to a place of peace. You learn techniques to calm the crazy. And honestly sometimes it’s just a deep set of breaths that bring you back to the now when your mind is racing.

This turned into way more then I intended. Today is a chemo day and I went solo (without a chemo buddy) so I had a lot of time to go off on this tangent. All I really wanted to say is, regardless of what you are going through in life, meditation; breathing and being mindful can have an amazing positive influence in your life. I know I come from this extreme cancer side of life and so many of the books I have read deal with cancer or major illnesses. But, meditation is not only for those who have to deal with cancer. Meditation is a gift we are all capable of that sits patiently inside of each and every one of us. You may be experiencing a loss; loss of a friend, family member, child. Maybe you are going through a major life change or dealing with a family crisis. Meditation can help with so many aspects of your life.

I honestly wrote this to get myself back on track and inspire myself to continue the journey and get back to those quite (although not always mind quite) times each day. I hope you feel inspired to pick up a book about meditation, down load the “headspace” app, or just start sitting with eyes closed, breathing deep and even for 5 min. Take the leap into a new space that may help you deal with all kinds of issues and situations. If you take anything away from this post please give meditation a try. It can truly be an amazing journey and I guarantee your perception of meditation/mindfulness is far from the actual truth.

Don’t forget, “Shine Brightly, Live Happily & Smile!” 

  Today after chemo & school - Soaking up some warm sunshine! 

My Breast Cancer Awareness

So it’s October again and breast cancer awareness month. The month with all the pink ribbons everywhere and all the fundraising for breast cancer everything. There is so much “awareness” out there in the community, in the news and on the internet about breast cancer. But many of us struggle with how that awareness correlates into our lives and the lives of our family. I certainly didn’t make the connection in my own life/family. Ask yourself some questions when you see the pink ribbon: “what does this mean for me”? “Do I have a family history of breast cancer”? “Does the BRCA1 or BRCA2 gene run in my family on either side”? These genes on your Dad’s side are just as important as on your Mom’s side. “Do I do self-breast exams regularly”? “How many people do I know who have had breast cancer”? “Am I being as proactive as I can be”? Early detection does NOT mean survival will be better or make outcomes more positive. As a stage 2 (considered early stage) survivor in 2012, I am now fighting stage 4 metastatic cancer starting in 2017. Although early detection is considered “better” it’s not a win for all patients. What if we could prevent cancer?  Is our focus on a cure really effective at this point in the fight against breast cancer?

One of my favorite quote: “awareness doesn’t do a dam thing without inspiration”. Pretty much every cancer or illness has a dedicated day or month where we talk about it, raise money for and support. What do we do with all the awareness that is out there about all the statistics for cancer, diabetes and other illnesses? We need the inspiration to turn awareness (aka the pink ribbon) into action. That should be the goal of “awareness month”, getting beyond the awareness, the ribbons, and the colors. Turning all that awareness into action with sustainable healthy choices you get excited about.  Change comes in different shapes and sizes. Make the connections between the awareness and how it relates to you, your family and your friends.

Cancer changes everything, it changes your perspectives and priorities, many times in a better more aware direction. But there are a lot of negative aspects of dealing with cancer for both the patient/survivor as well as the family and friends. Lots of things change, and it’s hard on the relationships all around you. Watching someone go through cancer is often times harder than dealing with it yourself as a patient.  So many of you reading this have been touched by cancer in some way, shape, or form.  The time has come to shift “awareness” into actions that support prevention and not a cure. Imagine a world where cancer (breast cancer and others) could be prevented.  To quote my good friend Jill, the traditional treatment for breast cancer is to cut, burn and poison (surgery, radiation and chemo). Survivors choose one of these options, all of them or non of them. But what if we didn’t have to make this choice?  What if there was something we could do differently. It could be a medicine, supplement, blood test, diet ect. that directly relates to a specific type of cancer prevention. The possibilities are out there for prevention but we all need to shift the focus together. I truly believe that prevent should be the focus and that we need a shift in thinking in how to treat cancer and those at high risk. Preventing is the key!  I also believe that if we know how to prevent cancer from growing it will lead to a cure because we will understand better how cancer works and why it is different for each person. Everyone’s cancer is different and right now we put cancer patients in different boxes and treat everyone in the box the same way, despite genetics, lifestyle and predispositions.  Think about your loved ones who have been affected by cancer. Think about your children and grandchildren. I think we would all agree we would do anything in our power to protect them from ever dealing with a cancer diagnosis at any age! One of my main motivations for prevention is my daughter, my nieces and nephews and my friends children. The history of breast cancer in my family is strong. And to have any of our children (between all of us six siblings we have 15 children, 9 are girls) have to deal with this at any age is heart breaking. I want there to be better options for them. They should not have to deal with surgery as a way to prevent breast cancer (mastectomy & oophorectomy plus hormone blocking meds). How is this the only option right now for girls who are at high risk and want to prevent (not detect early). Early detection just makes you a cancer survivor who has to make the choice to cut, burn or poison. 

We need to do better! We need to do more! Be thoughtful with your support during breast cancer awareness month. Ask questions and make sure you are supporting a cause you know to be helping patients and survivors.

Xo – Erin      

Summer Update

Hi Everyone!

Sorry that I have not written in a few months. Although I didn’t intend to take the summer off it turned out there wasn’t tons to update everyone on. And that is a very good thing!

I hope your summer was awesome! I certainly enjoyed the weather and sun this summer, it did my bones good. It went by so fast and just like that it’s the beginning of fall. This was my first summer home with Charlotte and we so enjoyed the pool, visits to grand-moms, play dates, ice cream and some family getaways. Charlotte started 1^st grade a few weeks ago which is a big step. Pushing Pink Elephants Inc. 5^th annual fundraising event was a huge success and an amazing night. We had over 220 people there and it was so humbling and amazing to experience the excitement and passion in the room 1^st hand.

If you remember last summer 2017, we headed out on our big trip to Colorado for 3 weeks. While there I received high dose mistletoe therapy. As we were headed home to continue treatments in DC we were so excited to keep the momentum going with this treatment. As you know from posts following that summer, things drastically took a turn for the worst in Nov/Dec 2017. Mistletoe turned out not to be a big player in keeping my cancer from growing and advancing as the months following Colorado came and went.  But what an amazing trip and adventure for us to take as a family! We were so grateful for the opportunity to try mistletoe therapy as an alternative treatment. There are lots of cases where mistletoe has really helps cancer patients heal from traditional treatments and some have even been in remission from regular treatments of mistletoe. Unfortunately for me, it wasn't as effected as we had hoped and prayed it would be.

   

Not much to update everyone on treatment wises. I am continuing with the same chemo regiment that I started in January of this year. We have had a few complications that required breaks from treatment but they have not been more than a couple weeks. Overall I have been faring well with treatments. I still have those days of exhaustion and nausea, but for the most part they are manageable. I am having more good days then bad ones which is a blessing for sure. Being home full time with Char has been so great, but I do not think I was meant to be a stay-at-home mom. I guess God and destiny have decided otherwise so we roll with the punches. She is six going on sixteen and as sweet and energetic as they come. I am so thankful for this time to be together more. I think back to my working days which were just a rush of day to day, not to mention stressful from start to finish. It is definitely nice to have slower days and take the time I need when I need it. We ate a LOT of ice cream and snow balls this summer :o)  

The most recent drama from last posts has been port related. The port (power port with is inserted under the skin connected to a main artery, used for blood drawls and IV chemo/meds) basically started pushing through the skin after just a year. This was most likely due to all the weight I lost over the winter with brain radiation and carrying heavy things on that side. We had it removed and a new one was placed back in Aug in a slightly different spot. Two new scars to add to my ever growing list of cancer related wounds. Having the port removed was not a pleasant experience. If you ever have to have one removed ask for anesthetic and don’t let them talk you out of it. It is extremely painful and I have a long acting pain med regiment. I can only imagine how painful it would feel for someone who does not. 

The humerus bone is less painful now so I am hopeful that tumor is shrinking some. The fluid building up in the arm seems to have gone down and it is less painful overall. I will still need surgery at some point to remove the tumor and reinforce the bone, but we are still waiting on a good time to break from chemo long enough for the surgery. Until then I am trying not to carry anything over 10lbs which is really, really hard. But when I do attempt to carry heavy things my back starts to hurt so the reality is I really shouldn’t be carrying anything. Easier said than done! Speaking of back pain, it’s so much improved from this time last year. I am still on long acting pain meds however. Over the last few weeks I have felt an increase in pain breaking through in my lower back. It’s especially noticeable at the end of the day, especially after a really active day. I am taking a little bit more for breakthrough then I had been. I discussed this with my Oncologist last week and we are keeping an eye on it. I was reminded to be aware of my activity and lifting as my back is not “normal” in terms of healing and endurance. I really have to be aware of my limits and just be more cautious.  I have had a couple of fractured ribs which were painful but fortunately healed rather quickly.      

My lungs continue to stay clear of fluid buildup! Woo Hoo!! This is another sign the chemo is working.

   

Thanks for all the continued prayers and support. It has been so nice to see old friends this summer and meet so many new friends. So many people have reached out to me and your support has been so amazing to experience.

Shine brightly, live happily and smile!

Xoxo - Erin