Brain Spotting

29 Jan

I haven’t blogged in so long; I am not sure where to begin.

I have been having back issues since March, on and off. Mainly on. I have had back issues, on and off, for many years, but things started to escalate in March, and have not let up. To make a long story manageable I will just say that due to a very difficult surgery (I woke up in the middle of the surgery and it went downhill from there) my first back surgery, 30 years ago, was extremely difficult. My anxiety, about having more back surgery, was off the charts. It was totally illogical. Totally frustrating. Totally not how my brain normally functions. But here we are. My surgery is about a week away and I was so freaked out I couldn’t answer the surgical pre-op calls that were coming in. I couldn’t read the surgical pre-op notes or directions. I couldn’t even stand looking at the time of the surgery. Illogical right? When someone would ask about the surgery I would get sweaty, nauseas, my heart rate would increase, and I would just feel awful. Anxiety is a terrible thing. It’s something I haven’t really struggled with before and I didn’t know how bad it could make you feel. But now I do.

I struggled quite a bit with trying to soothe my anxiety with my faith. Fear not, right? How many passages are there about fear? A lot. And no matter how hard I tried; I couldn’t fix it. And it was actually getting worse. I was really beginning to worry that I would not be able to get myself into that room for surgery. Sure I could take a pill….sure I could MAKE myself go, logically. But everything in my brain kept screaming no – and my body was clearly fighting back. Don’t answer the calls. Don’t look at the papers. Don’t make your down payment (ha! That will show them!)…..but I also know that I cannot, logically, continue on in the pain that I am in and the limited lifestyle I now live.

One of my friends told me about a counselor that does trauma therapy. I visited this counselor last week and she told me to just tell her my story. So I did…..she took notes on an ipad and then proceeded to explain to me how the brain processes trauma. Then I had a wonderful lesson on the brain itself. Our brains are amazing by the way! So we made an appointment for this week and I went yesterday. It was a two-hour appointment and I have to say, it was one of the best appointments I have ever had. We did something called Brain Spotting. It is related to EMDR and biofeedback. I am not going to go into detail because I don’t want anyone to have any preconceived thoughts on what this is or isn’t. But what I experienced was off the charts. I went in with an anxiety level of 8 (1 to 10) and I walked out with nervousness at about a 4. This is HUGE. She knew it worked just by my answers after the Brain Spotting. She was happy and excited before I even knew what I had experienced. My brain trauma has been released. It sounds crazy, right? Well, I cannot even describe how different I felt when I walked out of her office. Think of how many people could be helped by something like this. They work on anxiety, trauma, PTSD, addiction, grief….all kinds of things! I had no idea how my brain had been affected by that last surgery – after all it was 30 years ago. But this was released yesterday, I am exhausted today, and she said my brain will continue to heal for about 72 hours post treatment. I keep thinking “if it sounds too good to be true”….but this is the real deal. Today my level of nervousness is down to about a 2. This is right in line with how I felt for the rest of the surgeries I have had between back surgery #1 and now. For me, it is life changing. I was able to take my pre-op call. I have been able to talk about the surgery with no anxiety and no physical reactions, I have been able to take the hundred-pound weight I have been carrying around since March and toss it into the wind. Poof. It’s gone.

Being involved in the breast cancer community I know many survivors that have come out of breast cancer treatments, and surgeries, with some level of trauma and or PTSD. A constant reminder of all that was done every time we look in the mirror. Not all of us – but a lot of us. Remember, not all of us have the same experience – and everyone doesn’t process the same experiences in the same way. One woman can shake off losing her hair as no big deal as it devastates another. And one woman can shake off losing a breast as it devastates another. I had no idea how much trauma I had buried in my brain from my prior back issues until they started mentioning surgery last March. I told one of the doctors to stop talking about surgery or I was afraid I was going to puke in my purse. After months of that I knew something in my mind wasn’t right. Logically, it made no sense. But trauma is not logical.

The counselor that I went to is Kim Leppert and she is with Flyleaf Counseling. Please feel free to contact me with any questions or comments. Or check out her website – there are so many resources in our city – you just have to find them. That’s what this post is about. My word for the year (I am a Cultivator) has been “HEAL”. I chose that word back in November during my 2020 planning. I was so focused on healing my back – little did I know that the first thing that would heal would be my brain.

Kim Leppert – Flyleaf Counseling

https://flyleafcounseling.com/

 

Osteoporosis – Post Breast Cancer

24 Jul

Hi friends! It has been forever since I have blogged, but have been meaning to do a blog post on this topic for quite some time.

Post chemotherapy I was diagnosed with 12% bone loss and full blown osteoporosis. I was put on Prolia, which is an injection, every 6 months. If you are thin, please ask them to inject into your belly – not your arm! I had some hard side effects from these injections over the years, some were harder than others, some symptoms lasted longer than others. By the end of my shots I was sick for about two weeks. I know some people who get this injection that have very slim side effects, and I know others who have a harder time than I did.

I was on Prolia for five years…that’s ten shots. I believe they say that they are used safely for two years – which would be 4 shots. Prolia was a fairly new drug when I went on it and after my 8th shot my doctor, whom I adore, started to get concerned about studies that were coming out about this injection. Mainly about what was happening to people when they came off of these injections. Apparently studies were coming out about spinal fractures in women after they stopped taking the injections. I believe it was about 8 months after….so here we were trying to figure out what to do. I have a very bad reaction to the other bone strengthening drugs like Reclast or Fosomax. There is something in the base of those drugs that my body cannot tolerate – at all. So…the whole reason for this blog post is NOT to have anyone not take Prolia if your doctor wants you to take it. As always, do your research. But the question I didn’t know to ask before I started Prolia was “how exactly can I come off of this drug”….I didn’t know to ask that question because the studies weren’t in yet that there was a problem coming off. Maybe you can flip over to Reclast or another drug in that family. That would be great! I just want you to do your research and ask your doctor about the exit plan. My doctor has been amazing and worked it out through my oncologist that I could go on Evista – which is a daily pill. It can treat and prevent osteoporosis in women who have gone through menopause. It also can block breast cancer (hormone positive breast cancer).  I have been on Evista for almost three months now. Symptoms are fairly mild. Hot flashes are back – not sure why that is happening but it is a side effect. They seem to be increasing the last month. One concern I do have with it is that it decreases my magnesium level. Low magnesium causes fatigue, bad headaches, nauseas, AND BONE LOSS. Say what!?! So now I take magnesium citrate which can cause stomach issues. My magnesium was low enough after my first month of being on Evista – so they recommended 400 mg of magnesium citrate daily and I just cannot get that much in my system each day. My stomach cannot tolerate it. So, here I am trying to balance all of that out.

My headaches are more frequent and stronger, my stomach acts up often, I am nauseous often, and fatigued. BUT, it can always be worse right? Right!

The point of this post is to have you ask your doctor BEFORE you go on Prolia for osteoporosis and about your length of time on that injection….. and your exit plan to come off of it. You have to have a plan.

 

This Is What’s Been Happening

3 Jan

Check out what we have been doing and where we are going….good things are happening with Pink Smile Promise!

If you don’t follow us on instagram or haven’t asked to join our facebook page – please do!

A Favorite Memory From 2018

 

 

We Have A Chance To Win Money For The Primax Pink Warriors – You Can Help!

15 Aug

It’s not too good to be true! We have a cool opportunity. We made a 6 second video to be in the running to win anywhere from $2,500 to $25,000 for our Primax Pink Warrior team for Making Strides Against Breast Cancer and the American Cancer Society. This is such an amazing opportunity from Capital Bank Foundation, who we are a customer of, and they are making a BIG different in the communities in which they are. We are the only video in the running to benefit ACS or MSABC and with the size of our team and the HUGE amount of our passion – I think we have a great chance of winning something. BUT, it will take votes to get in the final running. That’s where you all come in.

Please click on the link below. Click on the top of the page where it says North Carolina. Then put in your email, name, and password. This will allow you to vote each day…if you so kindly would. It’s a simple ask that will just take a minute of your time and think of how many women we could help!

You can also share this blog, go to our FB page and share it from there. Ask your friends to vote. Ask your family to vote. Ask your kids to vote! If you, or anyone you love, has been affected by breast cancer – then you know how important this is! The money we raise goes to life saving research, vital programs, lodging for cancer patients who must travel for treatment…and the list goes on.

You all know me – you know where my heart is, and you know why. Our team is full of amazing people and the survivors on our team are the bravest women I know.

So please…take ten seconds out of your day, each day, and vote!

Thank you for everyone who takes the time to vote – and thank you Capital Bank Foundation for this opportunity!

 

https://25yearsofgiving.submittable.com/gallery/2757e72d-c120-42d9-8e2c-a0b70aca4758/10828959/

 

 

 

 

 

Jamaica- Mammograms Day 1

12 Aug

It was Monday morning, our first day of mammograms in downtown Ocho Rios, and we were excited. JoAnn and Christie were super excited, but nervous, because they didn’t really know what to expect. JoAnn has already been through breast cancer and Christie has had a scare with it, so they could certainly relate to the women we were meeting that day. They could relate on a female level, a test/screening level, a level in being nervous about results …but what none of us could truly relate to is the “what if” situation there in Jamaica. You see, a woman in Jamaica having a lump or a scare is a whole different scenario then a woman being diagnosed in the US.

So back to our first day. When we got to the clinic it was already full of women. The front waiting room was packed! There were already women back in the office doing paperwork and one or two women were in the far back in the screening area. We were suddenly standing in this waiting room full of women just staring at us. Yulit and Marilyn (from the JCS – please read my previous blog post) were there and so was a precious volunteer for the JCS – Pat. We met her that morning and fell in love with her. She is super-duper fantastic. So here we are standing in the room packed with women and Yulit and Marilyn proceed to tell them that the three of us have started a company that is paying for their tests that day. There was an immediate buzz through the room and many murmurs of “thanks and wows” and lots of gratitude. Yulit spoke about early detection, the JCS, how important these screenings are and how precious life is. Then she asked me to say a few words – which I mumbled through because I was unprepared for this. Then she asked JoAnn to speak – which then I believe Christie spoke and we went back to JoAnn. I will never forget the look of half terror and half panic when I saw that JoAnn knew she was not getting out of saying something to everyone. And she spoke from her heart….and she began to get a bit teary – which made us all get teary. I was so proud of JoAnn at that moment. She has never stepped into the breast cancer volunteer world and as I was standing there watching her it hit me that she is starting her volunteer career, in a foreign country, speaking to a packed room of women, bearing her heart and her soul – boom. Just like that. And it was super amazing. I knew that at that point forward JoAnn was going to embrace this adventure and boy did she!

Christie mainly stayed out in the main waiting room talking to the women, getting to know them, and taking a million pictures. JoAnn and I sat with the women during their paperwork process and before their test. We talked about anything and everything with them. Was that their first mammogram? Do they have kids? Grandkids? Do they work? You name it – we talked about it. One of the girls that really touched my heart came and sat with me and told me how scared she was because her Mom was a survivor and she saw everything her Mom had to go through – and that she had a lump. She was 37 and had a lump. I swallowed the fear that bubbled up to the top of my throat and talked to her a little bit about my Mom having had breast cancer – and then I told her I had already had it. She pulled her head back a little and said “you’re a survivor?”……I said “yes”……I told her that I understood her fear because I had been where she was that day not that many years ago. My Mom had it years before and suddenly, I had a lump and I remembered waiting on my mammogram and ultrasound. We instantly bonded. She relaxed. She looked at me again and said “so you’re a survivor?”….and I said proudly and firmly “yes I am”…we both sat back and kind of giggled and relaxed a little more.

There are so many moments and memories from our first day. We were so thankful for Moon Palace Jamaica Grande for providing lunch for these precious women. The lunch was delicious, and these women came all the way from Portland on a bus to receive their mammogram. A two-hour trip each way and they had to wait for every single person on that bus to be screened. It was a long day for everyone and once again I realized how fortunate we are in the US for our healthcare. But here we were, in Jamaica, with two of our women needing further testing. One is 22 and one is 37. Yes…the 37-year-old is the one I mentioned above. We were stunned. All of the other women would find out their exact results after they were read by another radiologist – but these two…. these two had obvious issues. My heart was heavy and I felt very burdened by the raw facts….we have two women with further testing needs and they will go home on a bus to Portland and then what? We had talked through scenarios with Yulit and Marilyn the day before, but now, now it was a reality. It’s one thing to discuss the nameless faceless of “maybes” over lunch. It’s a whole different deal once you meet them – they are no longer nameless and faceless.  My heart was heavy, and I began to pray – prayers that would continue for many weeks.

As we were rounding everyone up for group photos the most amazing thing happened; the women began to sing to us. JoAnn, Christie, and I whipped out our phones to video, but we were half in shock and half numb that this was really happening. Here we are standing on the sidewalk in Jamaica, it was very hot and humid, the bus was running and the driver was waiting for the women to get back on so they could head back to Portland, cars were whizzing by beeping and honking, and these precious women dressed in Pink Smile Promise tee shirts were dancing, singing, and praising Jesus for what He has done for them. It’s the first day of our work week and this was happening right in the street. I felt God’s physical presence at that moment like I hadn’t felt it for a long time. With tears in our eyes and goosebumps on our skin, JoAnn, Christie and I knew that every moment working on Pink Smile Promise was leading us to this first day, our first day of mission with these beautiful women, and it is just the beginning.

I saw JoAnn’s heart smash into a million pieces that afternoon and then I knew that she felt as comfortable in Jamaica and with our women as I did. I knew that she felt like she was right where she belonged, and a lot of her breast cancer lessons brought her to this moment on this sidewalk. I saw her hugging women and taking pictures with them, laughing, and I also knew that she didn’t want this day to end.

I saw Christie with the biggest smile I have ever seen on her face that day on the sidewalk watching these women. She knew that God was all over this moment and that we were on the right path. Pink Smile Promise is the right organization and it’s in the right country and town. Christie wears her heart on her sleeve and she is very open and loving. She embraced this day and these women with open arms and I know her mind began going a hundred miles an hour trying to figure out how we are going to help more women…and how we can help the women we were already serving, if they need us.

The first day was an emotional day with unexpected ups and downs. Two women needing further tests and all the women singing praises to Jesus in the parking lot.  Wow. Who knew that the three of us would feel such an emotional shift, in our lives, like we did that day.

For those of you who have prayed for all our #100 women, who prayed specifically for our two women that need further tests, and who are continuing to pray for our Pink Smile Promise mission – thank you. Prayer works… and for our group of women – it changed everything.

 

 

Jamaica Day One – The Story Begins….

9 Aug

I am finally in a good place emotionally to blog about our June 2018 Pink Smile Promise mission trip to Jamaica. I am going to post the real story here and a lighter version on the Pink Smile Promise website – more of a blog written from the perspective of an organization, not the raw emotions of Laura, JoAnn, and Christie. I am going to intertwine JoAnn and Christie’s thoughts, comments, and feelings into this story as I write it…just so you all know – this is OUR story…the story of Pink Smile Promise – not just mine.

To remind everyone – or tell you if you are new here – I (Laura) have been to Jamaica ten times and have done a similar project with mammograms in Ocho Rios in 2016. That was a trip with funds from a “contest” my friend Terri won, and we provided 200 mammograms. It was our pilot program – that we didn’t even realize was a pilot program –but looking back now, it was exactly that. JoAnn has never been to Jamaica and has not immersed herself in the world of breast cancer volunteering until this trip – but she is a breast cancer survivor. Christie has been to Jamaica several times, she spent her honeymoon there, and she has a heart for breast cancer and breast cancer survivors.

We had a very long lunch on our first full day in Jamaica with Yulit Gordon, the head of the Jamaica Cancer Society and Marilyn Williams – the head of the JCS Ocho Rios location. We, absolutely, positively, could not do our mission without the help from the Jamaica Cancer Society and the hard work from the staff and volunteers at the Ocho Rios office. They do the ground work for us and they were very gracious in June, hosting our program Monday through Thursday, and then putting on Relay For Life on Saturday. For anyone in the non-profit world – or anyone that works behind the scenes putting on a large “walk” or Relay for Life event – you know what a monumental feat it is just to put on the event. BUT, to have this kind of mission program in the last five days before your event is just beyond super natural. To say that these staff partners and volunteers are amazing is an understatement. I could not be more in awe of the week they hosted for us followed by a successful Relay event. Every detail was planned out and everything was perfect for our women. And then Relay was a success! Phew… the timing just worked out that they were back to back in 2018 – but it will not be the same going forward.

So back to the lunch on Sunday. The three of us talked and laughed and cried with Yulit and Marilyn. I knew that the personalities of everyone would blend beautifully and they did. I believe that going forward, friendships were formed that will remain solid, long after we are too old to Relay, and Pink Smile Promise is run by someone else because I am just too old to travel!

We talked a lot at lunch trying to figure out if Pink Smile Promise grows – which we are positive it will – do we do more mammograms, or do we go deeper with the women we screen? We talked through both possibilities and we are going to go a little deeper with the women we screen. If we continue to grow – then we will offer 150 mammograms and then 200 mammograms and so on. And if we continue to grow – then we move to another city in Jamaica as we continue our work in Ocho Rios. I was so relieved when we agreed because I know, without a doubt, that this is exactly how God wants us to move. When we  agreed I will never forget Marilyn, with tears in her eyes, raising her arms in the air and yelling “Praise Jesus!”

The more I learn about health care in Jamaica the more I know how fortunate we are here in the US. I have traveled the breast cancer road with many women in the past 7 years, and we are fortunate to be in a country that has the medical care that we do. People who have done mission work in other countries know exactly what I am talking about.

So, after our great planning session/lunch we were excited, and a little nervous, to see what Monday would bring. We knew a few things:  we knew we were going to MediRays (I have been – but JoAnn and Christie had not) – we knew we were catching a ride with Marilyn’s hubby Willie the next morning – thank God for Willie – what an angel…we knew we were scheduled to do about 20 or 25 mammograms and the women were coming from a town that is two hours away.

I knew what to expect at MediRays.…. I thought I knew how simply amazing this day was going to be. I also thought I knew how emotionally difficult it would be for the three of us. It doesn’t seem like it should be emotionally difficult. Hard work? Sitting in a radiology office for a day chatting with women. Precious Jamaican women. Difficult? What’s so difficult?

We were excited to get started…. but we had no idea what was in store for us.

Marilyn, Christie, Laura, Yulit, JoAnn – toasting the the commitment for #100Women

Jamaica Cancer Society & Pink Smile Promise

Jamaican Smiles

14 Jun

I cannot believe that it is June! I cannot believe all that has happened in the past few months, honestly, it’s a blur. You all know my heart lives in Jamaica. In the last year we committed to doing mammograms in Ocho Rios, Jamaica again. Terri and I did this in 2016, thanks to the generosity of her employer RSM, and it has sparked a passion to continue to serve the women in Ocho Rios. That was decided by us and then God stepped in. Whammo…in the past few months we have put together a not-for-profit organization, we have a Board, we have our 501 (c) (3) paperwork approved and complete, we have sold over 160 t-shirts, we have bylaws, have had a Board meeting and we have a website and Instagram. We are up and functioning. Shoot – at this point we are PACKING! We leave in less than two weeks and we are excited to be back where our hearts are called and our mission is planned. It’s been a very productive, and fast paced, few months.

JoAnn, Christie, and I will document our mission trip on Instagram (PinkSmilePromise) and our Facebook Page (PinkSmilePromise) – please follow us! Christie will be taking photos and video of our trip and our mission work and we will put together a link for all of you when we return.

But let’s talk about yesterday…gosh, I feel like there is so much to tell you guys. We are providing a Pink Smile Promise tee-shirt for each of the women who will be receiving a free mammogram – and boy are they super cute shirts! Anyway, my small group at church (New Charlotte Church) was so amazing to pray over our shirts that will be worn by our 100 women, they prayed for the women getting screened, they prayed for safe travels, and a successful mission trip…and as always – that no cancer hides. No matter what. As our first friend started off praying she began by thanking God for my good health and JoAnn’s good health. She thanked God for taking a very dark and scary time in our lives and using it for good. Thanking Him for using us to bring education, screening mammograms, and hope to these beautiful women. Thanked Him for using our tragedy for His triumph. I was totally prepared for the prayers over the shirts and for the women and even for our safety….I was totally unprepared for hearing our friends speak so honestly about how God is using our tragedy for His triumph. For His glory. For some reason I felt as though someone had pulled my scabs off. I was kind of off kilter for the rest of the day. I began to feel unprepared for this trip and unqualified for this mission. Who do I think I am starting a business? Being the Chairman of the Board and President – legally that’s what I am. Mentally I am so far from that you could never even imagine. Yesterday I kept thinking “how did I get here?”….”how has this happened?” I knew JoAnn was home trying to get packed and ready to go and here I was beginning to question my ability to do any of this. What if this whole venture fails and everyone is disappointed? The “what if” yesterday wasn’t the same confident “what if” I had a year ago when this calling started. It’s odd because Terri and I already did this. She helped lay the groundwork for what will be in my life for the next three years. Why all of the doubt? Why the feeling of being off kilter? I thought this prayer meeting was to help build us up, cover us in God’s armor, and let us fly off fully prepared for what we are going to do. Why why why? And then I received a text from one of my friends from our small group. The picture is below and it hit me like a ton of bricks. I have read this a million times since last night and it still sits in my mind and stirs something in my heart. A lot actually. Thanks Melissa for sending me this last night. I really needed it!

It has so many meanings for me – and I look at this in such different ways. For anyone and everyone. We all have walked through some kind of hell, right? Dark days, grief, loss, disease, disappointment, financial disaster, loneliness, despair, depression….phew….all of it. We have all walked through something – many of us through many “somethings”….but this. The thought of all of us walking out of the flames carrying buckets of water, flavored and colored with our own life situations, willing to take them to others still consumed by the fire. This is the base of what I have done since early on in my diagnosis, well, sort of. I was speaking it and spreading some education about my situation and then once I got a sense and taste of what it was like to help someone else facing what I was going through or had gone through….it was amazing. It was consuming. It was what healed me. And the more I did – the more I healed. The more I healed myself – the more I was able to love on other women. But this….in another country? A real organization with financial needs, people counting on us, survivor friends watching and waiting to see where this organization goes and how this story unfolds, Board Members who are “all in”….this is a lot to even comprehend some days. But the base of this is just so simple. To help others, in a country that we love, with screening that they cannot afford. I just have to keep it simple!

So yesterday is gone and today I am back to my normal self. Maybe yesterday was a small attack of nerves or a little anxiety or maybe a gentle reminder for me to always remember who is in control – over everything. God knew all along that I would fall in love with Jamaica and that our Pink Smile Promise would be born after a lot of love, darkness, and tears….He also knew that I would welcome this with my arms wide open and He would put people in my life that would welcome this new adventure too. I didn’t know this – but I do now.

https://pinksmilepromise.com/

 

Test Results And A Broken Heart

24 Apr

It is funny how the perspective of what’s important, and what’s not, can change in the blink of an eye. As I was prepping for my bone scan last week, I got a call that one of my friends didn’t have much longer to live. She had been battling metastatic breast cancer to her bones for many years. She was quirky, she was fun, she was a Mom, she was a friend, she was a Primax Pink Warrior and she was a true fighter. She fought breast cancer till her physical body could not keep fighting.

As I lay in the machine I kept praying for God to have mercy on her, to keep her pain to a minimum, to disconnect her body from her brain so she wouldn’t know pain if it was there. I focused my time in that machine, laying completely still, praying – begging – pleading – for her pain and suffering to be over. It’s amazing how fast time goes by when you are laser focused on something like that versus the machine clicking around your body and the radio-active gunk running through your body and bones.

My friend Jackie passed away the night of my bone scan and my scan results came back clear several days later. It’s odd to wonder why some moments in life weave themselves into your story at the moments they do. Sometimes I think they are super cool, sometimes…not so much. My heart continues to break for the family and friends that my breast cancer peeps leave behind. It happens far too often and fuels my passion to keep going in the cancer community. Every. Single. Time.

I thank God Jackie’s pain and suffering is behind her. I also thank God for my continued clear health. Seems so tiny and little and somewhat selfish to think about my situation with this constant bone pain when I know Jackie’s kids are devastated. I remember all too well losing my Mom to metastatic breast cancer when I was 30. It has changed my life…. just as it will change theirs. So my bone scan? Seems so little, now doesn’t it?

As I continue down the road of life, my perspective changes so often it sometimes feels like I am living another life. I cannot go into details about the latest life changing perspective I have learned – but I can tell you that I will NEVER EVER take my personal freedom for granted again. Never. I spent one of the hardest weeks/weekends I have ever spent and I am not totally sure I will ever be the same person I was before. These life lessons are faith building and sometimes I can really see what I am made of. It’s one thing to help people – it’s a whole different thing when God calls you into a situation that really pulls you into the dark side of humanity and makes you know things that you just don’t allow your mind to think of.

With that being said – I know we all serve a huge God and no matter what – faith wins. Jackie has won her fight with cancer – she is dancing in the arms of Jesus and is happy, whole, and pain-free. The other situation will be unfolding for a long time – but I know that God will surround this with His army of angels and bring healing, peace, and a new future where, just a few weeks ago, there was no hope. None.

Dark post today my friends…you know my motto. I promised to be honest and when things are raw – I will write them as I experience them. But better days are coming….there are so many good things unfolding around me and in a day or two I will be able to share some happy news. Until then my heart needs to remember and that the harder the struggle – the greater the triumph….and that’s for Jackie and the other situation – not for me. In all things we can trust, and grow, heal, learn, and really get a good perspective on how precious life is.

Tests and more tests…and some honesty….

13 Apr

As I sit here with radioactive tracer running through my bones I have to admit I haven’t been very honest lately with some tests that I have had done. I promised everyone when I started my blog over 7 years ago I would use each situation that came my way as a teaching opportunity and I haven’t done that.

After someone has had cancer, any type of cancer, things pop up in your health history, and day-to-day life, that are always questionable. Most of the time they are questioned, and watched, and then the doctors may take some tests mainly to rule out what your symptoms aren’t – more so than what they are.

For my survivor peeps – a lot of you know that these emotional ups and downs are totally normal. But some of you don’t. Some of you think that when you ring that bell after radiation, or kiss your plastic surgeon on the cheek and say “see ya later alligator”…or when your appointments with the oncologist become further apart – you think that you are DONE. You don’t know how many times I have heard my survivor friends saying “I am DONE!” as they finish treatment…and they are done with that chapter – hopefully – in their lives. But what people don’t understand is that the roller coaster continues. It isn’t so much the fear of recurrence for me. I never have gnawing fear or consuming worry. Some girls do – shoot…some end up with very strong PTSD…and I totally understand why. But what people don’t really realize is that the drill continues for us long after the chemotherapy, surgeries, and radiation is over.

Last summer I had some lumps appear above my left breast  – the breast where Mr Lumpcake lived. That was a sad time for me. The ultrasound was ok – but the breast biopsy and placing a tumor marker was not. The procedure itself wasn’t bad but procedure pitched me back into February 2011 in the blink of an eye. Thankfully my lumps were benign cysts and necrosis  and they continue to live there now. My body is making cysts for some reason and the docs aren’t sure why. Since then I have had a bilateral MRI with contrast to check some “junk in my armpit” – which also seem to be cysts. That was in September. After that I went back into day-to-day mode…living life.

Two weeks ago I had my 6 month appointment with my oncologist and she feels that there is still something funky going on under my arm and I showed her some sore spots I have had on my ribs for a few months right below her funky area. I am sure the soreness is from my osteoporosis or arthritis. But she wants to see what’s really going on. SO, with all of that being said – here is a description about the bone scan I am currently having. Today.  Now actually.

A bone scan is a specialized radiology procedure used to examine the various bones of the skeleton. It is done to identify areas of physical and chemical changes in bone. A bone scan may also be used to follow the progress of treatment of certain conditions.

A bone scan is a type of nuclear radiology procedure. This means that a tiny amount of a radioactive substance is used during the procedure to assist in the examination of the bones. The radioactive substance, called a radionuclide, or tracer, will collect within the bone tissue at spots of abnormal physical and chemical change.

The radionuclide emits a type of radiation, called gamma radiation. The gamma radiation is detected by a scanner, which processes the information into a picture of the bones.

The areas where the radionuclide collects are called “hot spots,” and may indicate the presence of conditions such as arthritis, malignant (cancerous) bone tumors, metastatic bone cancer (cancer which has spread from another site, such as the lungs), bone infections, bone trauma not seen on ordinary X-rays, and other conditions of the bone.

So I wanted to blog and tell my breast cancer peeps – THIS IS NORMAL. Skipping off into the sunset and not having issues is not the norm post breast cancer. And that’s ok. I don’t have, nor would I want, a doctor that was scan crazy. I don’t want any part of that…what I do want is someone who has my back and is proactive for my long-term health. I am interested to see if this will highlight why I have bone pain most of the time post chemo. Long days, changes in weather, lots of time sitting, or lots of time on my feet having me bathing in essential oils to take that away. But for now, today, as I sit here with this radioactive “stuff” running through my body – I realize that it’s time for me to tell my survivor peeps that this stuff post breast cancer is ok. It’s proactive. It’s a little unnerving each time – but it isn’t scary unless you allow your mind to “go there”….don’t let it go there – you have control over your mind. Remember – fear is the absence of faith. Speak your story and tell it out loud so others can learn from it and then maybe their own story won’t scare them as tests are needed. It also lifts the veil of the “I AM DONE” thought process and let’s people peer into the real life of a survivor. It’s not all pink ribbons and smiles and thumbs up. Sometimes it’s getting dye injected into your veins and laying face down on a hard table for an hour after being put into a long tube. All of the time it’s blood work and waiting for results on those tests, sometimes it’s brain scans, bladder scopes, and like this time – having radioactive “stuff” put into your body to trace through your bones to see just what’s up – if anything at all.

This post is not meant to induce drama or fear in my friends or survivor sisters. It’s a teaching moment to let everyone know that this is real life after cancer. And it’s normal.

Love on your breast cancer survivor friends and family members.  Just because their surgeries and treatments are over does not mean the roller coaster ride has ended.

Not Looking Back – But Not Forgetting Either

1 Mar

For my triple negative breast cancer friends out there – today is a big day. Today I hit my 7 year anniversary of being diagnosed! Not that any other breast cancer is less of a celebration at 7 years – but for my TNBC friends and readers, you all know this is crazy big.

I am so very thankful for the chance to celebrate this day. In the beginning of being NED (no evidence of disease) – we celebrated each year with a big lunch or dinner with family and friends. A party lifting off lanterns at a park or a huge PJ party in a very nice restaurant….but as my cancer diagnosis got smaller and smaller in my rear-view mirror, so did my celebrations. In fact, last year we didn’t even celebrate. I want to continue down the path of looking forward – but never losing the lessons I learned in those moments that live in my rear view mirror. Those moments have made me who I am today and the girl I was is long gone.

In the past 7 years I have done some volunteering for the American Cancer Society and starting a support group for TNBC survivors. I have been in touch with hundreds of breast cancer survivors and getting to know these precious women has enriched my life. In the past year or so I have not taken on very many new patients to mentor through their diagnosis. I have rolled off running the TNBC Group. I took the last year to settle into our new house and I have continued running the Primax Pink Warriors for Making Strides Against Breast Cancer and the American Cancer Society. 2017 was our largest year with 375 walkers and raising over $130,000. What a team of amazing people I am blessed to lead….you all have no idea what this group of people means to me. I have also talked a bit about my heart pulls to help the women in Jamaica and providing mammograms ongoing in Ocho Rios. I am super excited about this. The entire thing is falling into place, not only for June 2018, but for going forward. As steps are taken I will blog about them and then you all will get a glimpse into a website, blog, and a vision for what we have started. I have also accepted an Area Board position for the American Cancer Society. This is super interesting for me and I am honored to be asked to be part of this group. The group is from Asheville, Charleston, Greenville, Columbia, and Charlotte – at least I think that is right.

So, in essence, over all life hasn’t changed a lot in the last few years. I have stepped away from patient involvement a little and am volunteering at a more strategic level for ACS and in this I have found peace. It is nice talking about something other than personal scars, personal side effects, and dealing with the loss of hair or breasts. Don’t get me wrong – I LOVED becoming friends with my survivor peeps. No matter what, hands down, it has been the way God has stretched me further than anything I have ever done. To be allowed to spend time with people in the time frame near them transitioning from here to Heaven is the most sacred time you could ever spend with another human being. But I am not trained for this. I am not counseled for this level of grief. I am just a regular girl who was thankfully allowed to wear my heart on my sleeve for several years and I know meeting my survivor peeps has far more blessed me than anything I could have ever done for anyone – ever.

So onward we go my friends. That is my word for 2018 – ONWARD. I am so thankful God has given me the gift of the past 7 years. I have been able to fall in love with my JellyBean. I have watched my kids go from their early 20s to their mid-late 20s. We have settled in our new home. I have gathered a group of people who are as passionate about our new undertaking as I am for Jamaica. I have been able to watch so many of my survivor friends beat the crap out of cancer and put their lives back together. I have also watched some of my survivor friend’s fight, and fight, and fight while I have been getting my health back. And for this – it drives me to continue to be involved and raise money for research and for programs. I have so many prayers for my stage 4 friends….so many prayers. We need a cure and we need more light on metastatic breast cancer. NOW.

So, once again, like I do every year at this time, I raise my glass of orange juice, or this morning, it is coffee….and I say to you Mr Lumpcake (my tumor) – “rot in hell Mr Lumpcake….rot in hell.”

Here’s to an amazing 7 year story that continues to unfold – written by our amazing God – for a regular old girl like me. ONWARD friends….let’s keep looking forward but may the lessons we learned stay in the forefront of our hearts and minds.

 

 

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