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             

Humerus Bone

Such an amazing sunny day!!! I cannot get enough of the warm brightness of spring. Birds, bugs, flowers, green trees……….I love it all!!

You may recall back in November/December I shared that my humerus bone in my left arm was at high risk for fracture. The debate at the time was surgery to reinforce the bone, or to try radiation to kill the cancer cells. We went with radiation and I had 10 total treatments. At that time I didn’t have any pain or discomfort in the arm at all. About two months ago I noticed some swelling in my bicep, decreased range of motion and pain. The pain starts at the top of the bone and goes down to a little above the elbow with the worst on the high side of the bone where the humerus and the shoulder connect. The scans and x-rays began, which showed fluid build-up and a cancerous lesion that is growing out of the bone. The tumor that is growing outside the bone is what’s causing all the pain right now. I call it the “snuggle zone” for Charlotte. Her head is right at that level when we are snuggling on the couch and she bumps it on a daily basis. Ouch!!!! She has started to ask about my “bad arm” before she sits down with me which helps negate some of the bumps. It’s also the same arm that is typically use to carry things since my mastectomy back I 2012. The right side had the original surgery for lymph nodes dissection (preventing lymphedema has always been a focus for me). I also use it to push myself out of the car when I am parked and the same side I get blood pressure taken on. It’s hard to tell what the true pain level is at this point. I am still on a pain patch and we recently went from 75mg down to 62mg so it’s probably causing more pain then I recognize at this point. The pain patch is for the cancer in the lower lumbar spine that was causing so much pain this time last year. We are slowly weaning down the patch but I may never be total free of constant long term pain management at this point. I have been doing some lymphatic massaging which has helped some of the swelling go down in the arm.

I consulted with radiation oncology and she referred me over to orthopedic surgery for further evaluation. Unfortunately more radiation isn’t an option and it’s possible this treatment could have caused this to happen. Radiation can cause cancer (one of the risks you take) and with no symptoms or pain prior to the treatments it could have contributed to or not been effective in this current situation. With that being said, radiation has been very effective for me in other areas along the spine and brain and has really helped with pain mgmt.

Last week Steve and I met with the ortho surgeon who was very nice and patient with us. Yet another doctor who has been added to my team. I have lost count of how many doctors I have seen and consulted with at this point. The surgery itself isn’t super invasive which is good. They would go in and scrape out all the cancer, fill in the hole from the tumor removal and fortify the entire bone with a rod from shoulder to elbow. Recovery didn’t sound bad either and basically I should be able to apply weight pretty much right away. I have wanted to start yoga or some light weight training which is delayed by the fracture risk. I can’t put my full body weight on that arm. The surgery would be the same if I do end up fracturing or breaking this bone prior to surgery, there would just be more clean up needed on the bone or muscles depending on how it breaks.

Basically we need to weight the pros and cons of the timing. This surgery is needed but with chemo working is now the time to take a break necessary to allow for surgery? That is the question! It will come down to how long and how much pain can I tolerate until I can have a chemo vacation. Ideally it would be nice to get through summer and fall before surgery. https://www.knowyourbody.net/humerus-bone.html

Never a dull moment in the life of stage 4 cancer that’s for sure. Even when things are going well on one hand there are most likely other things that are not be going so well on the other. We are happy with the results of chemo and it’s unfortunate we have to deal with another surgery and another issue. Thank goodness for amazing physicians and surgeons we have so close at Johns Hopkins. The collaboration and consulting between all those on my team happens behind the scenes and is quickly and effectively done.

One other topic I just want to clarify for my readers. Although the pet scan from my last post did show less lesions in the spine there were still too many to quantify. The bones don’t show up great on a PET scan so it’s hard to tell how they are responding if at all to the chemo. Radiation and vertebroplasty has been done to various parts of the spine which is what we attribute the reduction of lesions and pain to. “Too many to quantify” is still pretty extreme in terms of how advanced this cancer is throughout the bones.

I hope everyone has an amazing weekend, love to you all!

PET Scan Results

I wanted to share a quick update on my most recent PET scan. It was hard for us to believe, we have had such bad news from previous scans that seemed to consistently show progression over the past year.

Friday evening the PET scan was released for me to view with a message that said “Good News!” We have finally gotten the news we have been wanting to hear........shrinking lymph nodes, less lesions along the spine (thank you radiation), and all organs remain cancer free!! Great news for this mamma and an amazing mothers day gift!! However, Steve and I both felt unsettled at first. We felt like we should be shouting and celebrating this amazing news but for some reason we didn't do that. We just sat there letting it sink in, quietly pondering the results. Our faith in the results were clearly glass half empty (which is not my normal view) and when we actually received positive good news we didn’t know how to react. This is a reminder to always have faith and hope in the healing that can take place. Our hope and prayers were for “no growth” and to have a report of reduction is really amazing!

Now, we have no idea how long this will last or how long this particular chemo regiment will be effective for my cancer. But for now, this is really good news as we go into the summer months.

Thanks for all your prayers (they are working), love and support! Continue to pray for stability of my cancer and strength as I continue through treatments and side-effects.

Love

PS: check out my 1 second claim to fame from the Orioles game on Sunday as they recognize Dr. John Fetting of Johns Hopkins University for advocating and fundraising for breast cancer prevention. 

https://www.mlb.com/video/birdland-hero-dr-john-fetting/c-2040325583

Mothers Day

Mothers Day Morning Love

One Year Later - Where I am Now

Hi ya’ll. It’s been some time since I last posted an update here. What is so hard to believe is that 4/28 marked my one-year mark of fighting and facing stage 4 cancer. This past year has been filled with so much physical and emotional pain that I am not going to write a recap post. I am going to write a “Where I Am Now” and not focus too much on the past year.

I am stronger and feeling so much better since the brain radiation finished in December. With the current chemo plan, which hasn’t changed since my last post (Lynparza along with the IV Carboplatin), I have really bad and debilitating headaches. Nausea is also a big issue. The current cycle is 2 weeks (1st week I do the Lynparza pills and one day of IV Carboplatin. The second week it’s just the IV treatment followed by a 2 week break). As of this current cycle headaches and nausea is much improved!

I had a period of really bad anxiety and depression but that has passed and I rarely have super down days (at least recently). Since I had a relatively non-emotional personality in the past, emotions can be hard for me to deal with. Hard for me and Steve, plus friends and family who try their darnedest to keep in touch and provide emotional support. Happy, carefree days are most certainly in the past, but I am hopeful that the more years I gain the more freedom we feel. When you are diagnosed with early stage cancer, there is an end in sight and you are able to count down the days of treatment, surgery, etc. With stage 4, it’s treatment for the rest of my life and the effectiveness of the current treatment plans that never ends. The three of us went to breakfast on Sunday and the waitress said, “Can I ask you a question?” “Sure,” I said. “Did you beat it?” At first, I didn’t fully hear her question and she repeated “Did you beat it?” I think both Steve and I took deep breaths at the same time and I said, “I’m actually not going to beat it, I am going to live with it.” She didn’t know how to respond and started sharing a family history on her step side of the family. She wished me luck as we were leaving. It didn’t damper the day, it is what it is!! I am having scans soon to see where we are. I am really hoping and praying for a sign of decrease in cancer especially in the lymph nodes but even a stable status quo would be ok at this point - NO Growth!

The past few months have definitely been the best since last April. In fact, we attended an annual event for a great non-profit (Believe Big) that we attend for Pushing Pink Elephants Inc. each year. I remember last April being in so much pain at this event. Pain that was coming from the cancer in my spine that we didn’t know was there yet. This year at the event I was almost pain free thanks to pain management, surgeries, and radiation. I even wore heals for the 1st time in a year. I paid for it later that night and the next day. My lower back wasn’t super happy with my decision, but it was a fun night to be dressed up and fancy and I had a fun time.

I still do not feel like I have adjusted to being home full time. Work was so much a part of my every day that a year later I still feel like a fish out of water. I so appreciate the time I have to rest when I need to and the extra time I get with family and friends that I didn’t have before. But I miss the routine, co-workers, projects, and the daily interaction with others. I miss the old “normal” day to day. The stay-at-home mom bit wasn’t in my plans and it’s a blessing, but when you don’t feel good and have to pick up your energetic 6-year old from school it can be hard. Mornings can be a struggle sometimes as well. It kind of feels like morning sickness or all-day sickness like I experienced with pregnancy. It’s just hard to know how the day will progress when I open my eyes in the morning. We have our bad, good, great, and amazing days, it’s just hard to know how the day will unfold. Steve’s morning questions are “How did you sleep?” and “Do you feel ok?”

I got to celebrate the big 37 on April 14th. It was a truly beautiful Saturday and we took a short trip to the beach to celebrate. It was nice to get away with Steve and Char and enjoy a good weekend of sun and fun. I always said that if I hit 40 and stayed cancer free I was going to have a huge party. That ship has sailed, but you better believe 40 will still be a big celebration with friends and family in a few years. I have the hope of stability and “stable” cancer!!

So things are going ok! Better than they have been in the last six months. I am not gaining weight, so I am pretty thin, but not losing anymore so that’s definitely a positive. I am getting stronger and able to do most of the things I was unable to do back in December and January after brain radiation. The biggest issue right now is getting through chemo without the side effects. I also have some pain and swelling in my left arm (humerus bone that was a fracture risk and was treated with radiation as the 1st option to rid the bone of cancer). So far, we are not sure the cause or how we will treat it going forward, but it is quite painful. Char bumps it on a daily basis. My hair is coming back from brain radiation. So far chemo’s are not causing hair loss so hopefully in a few months I have some hair growth.

Sometimes posting a Facebook post is easier for me to quickly share updates with friends and family. Here are two posts since I last updated this blog! Thanks for reading, keeping in touch, praying, and thinking about us! We love all of you and ask for continued prayers as we get ready for summer!




14th:

I found this blog today which pretty much sums up almost the last year of my life. Each day is different in terms of if it’s a good feeling day or a bad one. Every morning we assess and there are many days (like this week and last) where I stay in bed and Steve drops Char off at school or days when the mornings are good, but the afternoons are bad and someone has to pick Char up. Chemo is so hard on your body and with no end in sight for treatments you don't see the ending (I so took for granted that chemo countdown I did back in 2012). Scans put the fear of God in you and each symptom has you thinking of progression. Even good scans give you pause when you feel something isn't right because you are having symptoms or feel something is just not right in your gut (that was my day yesterday). It’s a hard road to go down for the rest or your life. Thanks for everyone's continued prayers, texts and love!!!

Shine brightly, live happily and smile!!! Xoxo



February 27th:

Chemo day! Two types of chemo for some double hitting cancer kicking power. So far it seems to be working at reducing lymph node involvement so we may have finally found the chemo that will work for me.

Pictures from the last couple of months:

Believe Big Fundraiser (Brother Darin, his wife Amy & Steve)

Believe Big Fundraiser - Hair & Heals

Birthday celebrations with my girls in NC

Birthday at the beach, turning 37- 4/14

Charlotte took this picture of her mamma

St Patty's Day with this stud

My Love Hate Relationship with................

My current love-hate relationship will most likely take a lot of people aback when I share this struggle. I hate food right now. Diet and nutrition is such a big part of overall healing, and in the case of Cancer the emphasis is strong from all fronts. Should I be gluten free? The short answer here is yes, I should! Should I take on the anti-inflammation diet? Should I cut out all processed products even those GF products? Is the donut from DD’s really going to hurt me? Not to mention the DD’s latte with almond milk that although sounds healthy is full of sugar. Back in 2012 I totally revamped my diet and cut out all sugar from my diet. I was vocal and opinionated about it, especially at work where I always declined the cookies and desserts that would from time to time make their way into my line of vision. When I was diagnosed with Stage 4 I joked around work, “I should have eaten the F-ing cookies.” What was the point after all? Nutrition didn’t save me from getting cancer again now did it? But despite my struggle with what’s best to eat right now, I know it’s important to my healing and wellbeing. Because my weight currently is still considered low as I have not recovered from the initial diagnosis weight loss, protein is a big push for me right now. On top of the initial weight loss, I lost even more weight during brain radiation. I looked quite sick and thin for months. It’s been a slow process primarily due to the fact that I hate having such a focus on what I am eating right now. Sometimes nothing seems good or I just want to eat all the things I shouldn’t. Protein (shakes, animal, or plant based), green veggies, mashed potatoes, hummus………………………..love-hate!!! Nutrition is consuming my life from the time I wake up until after dinner time. What is a girl to do aside from taking it one day at a time and one meal/snack at a time!!!

Through this struggle I have been getting my smoothie on every few days when my stomach says “YES.” I am using the following ingredients in my smoothies these days with Origain protein drink as the main ingredient to add a protein bunch. 

• Origain protein prepaid drink
• Handful of fresh blueberries
• 1/2 bananna
• two handful of spinach packed tight
  
  
  
  
  
  
  

- Blend and Enjoy!   

Although the struggle is real I know I need to create a loving and nurturing relationship with food again in my life and I am working on it as I type this blog. I know it’s important to healing and that in every way it shapes how we go about our day.

In addition to the smoothie, my goal is to try a new recipe each week and try something new from the ever-growing stash of cookbooks I have around the house. This week was a really yummy detox soup that I found within my Oh She Glows cookbook. It included some awesome spices that make the flavor really great and it tasted yummy. I substituted out vegetable broth with a healthy dose of bone broth. Bone broth is known for some amazing health benefits. Give it a try next time you are making a soup that calls for a broth base. It’s known for its healing powers. Even if you just sip it straight from a nice warm cup like a tea it’s great! I have been drinking warm cups of bone broth a couple times a day. It’s actually not a bad little sipping snack during these long, cold winter days in Maryland. Full recipe here for the Oh She Glows - Detox Soup

 Substituted with bone broth instead of veggie for the added health and healing benefits

Garnish with squeeze of lemon & chopped kale

Snowy Day Update

I am up early on what is a beautiful snowy morning with 2 hour school delays. Oh wait, now it’s a snow day here in Maryland! With coffee in hand and a quiet, dark morning I find this post matches the mood of the day. New snowfalls and new beginnings. I have just come from what seems like my millionth overnight stay at Hopkins. So far I have not gone a month in a very long time without something popping up that requires more serious medical attention. We are hopeful that February will be a quiet month in terms of medical issues that arise.

This latest stay was the result of more extreme headaches followed by nausea and vomiting. Similar to last time, but for a different reason this time around. The updated CT and MRI scans of the brain revealed what appeared to be a spinal fluid leak on the brain. It was treated with steroids, caffeine pills, and pain meds. They weighed the risk and benefits of doing a test that would confirm if there was leak and then would put in a blood patch to clot over the area. It was decided it was too much of a risk at this point to do the procedure, as it would introduce an additional spinal puncture, further risking additional leaks or complications. This latest stay was 5 days in the Weinberg Cancer Center at Johns Hopkins. It was not how we wanted to spend our long holiday weekend that's for sure. I was pretty disappointed in starting the steroid again. I had just weaned off of it at the end of December, which meant I could resume mistletoe injections and/or infusions. Because there are some complications to using these two meds together, mistletoe goes to the back burner once again.

In other news we are starting an additional chemo called Lynparza (olaparib), which is a pill form of chemo. We will do the Lynparza along with the IV Carboplatin. Because I am still having what appears to be continued progression, my doctor didn't want to keep this new drug on the back burner. We are throwing everything we can at it to get some stabilization of the disease.

I am so excited to be back home resting. Although with a snow day and having Charlotte home and cooped up it’s not going to be overly restful. But it's good to spend some time together since I had been away from her for so long. It seems that we are consistently being admitted to Hopkins for tests, treatments, and/or interventions.

Because the last few months have been so hard on us we are planning a well-deserved family vacation the beginning of February. Prayers this trip is as amazing as it sounds and that I will have the energy and stamina to keep up with everyone. Pray more importantly that I remain un-hospitalized leading up until the trip and for the duration. I am still having trouble with stairs from all the brain radiation. I am working on conquering them so that I can have the leg strength I need for our next adventure. We are all looking forward to a warm, relaxing, and enjoyable vacation to Hawaii. I for one am beyond excited to have something fun to look forward to and some much needed time with the family.

I have started more meditation and mindfulness work on myself. It’s been helpful to learn to slow the breath and get into a relaxing and meditative state. I came across a book called Being Well (Even When You Are Sick) that I really love. It was great for someone who is dealing with a life threatening diagnosis. It is simply written and easy to follow with great meditations you can download. I have read it twice over the last couple of months. The author, Elana Rosenbaum, also wrote a book called Here for Now: Living Well with Cancer Through Mindfulness. It was not as good as the first book, but another great resource for meditation. I highly recommend them if you are going through something like this and are looking to channel your mindfulness muscles. We all can use some help in getting our mind to quiet down and focus on the breath.

Happy snow day here in Maryland and I hope you are all safe and warm.

Love and Light - Erin