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Long Time, No See...

12/27/2014

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Here I am!  Did you think I forgot about you?

Truth is, life has been very good - very normal - very busy since I last wrote this past summer.  I have been working full time in the PT clinic, running my photography business (which was super busy all summer and fall, thankfully!), traveling, spending time with family and friends - and just living my normal life.  Of course, this also consisted of my daily meds, monthly injections and visits with Dr. F every 12 weeks.  

There has been so much I have wanted to update the blog about but each time I had some down time, it just didn't feel like what I wanted to spend my time doing.  I never wanted to feel obligated to keep the blog going.  I wanted it to feel right - to feel like something I wanted to do - needed to do.  Not only for all of you, but mostly for myself.  It got to the point where there were so many things I wanted to share (like all of the amazing things we accomplished for MBC at the Komen Race for the Cure, my opportunity to speak and share my story at a few different events, and the once in a lifetime experience I was able to have in Hawaii!) that it became overwhelming and it felt like I was so behind, that I just took a break for awhile.  Fully intending to get back to it when it felt right.  

Well, I guess that time has come.  I will eventually catch you all up to speed about all of the things on my mental "blog to-write" list but for now I want to just fill everyone in on the most recent state of my health.  

I have always dealt with on and off back pain and muscle spasms since my diagnosis.  But on October 25th, I started experiencing severe left hip pain.  I was practicing yoga 3-4 times each week but couldn't think of any specific injury or cause for the pain.  However, I have often thought I had a micro tear in the labrum of my hip, so I thought that I probably further tore it and that would explain the pain I felt with flexing my hip.  Thankfully, my co-worker would work on it a little at work for me and it got a bit better so that I could at least tolerate a few minutes of sitting without being in near tears.

As my trip to Hawaii drew near, I started getting nervous for the long flight and decided to see an orthopedic surgeon to have my hip checked out.  He did an x-ray which turned out fine and then ordered an MRI which unfortunately couldn't be done until the day I came home from Hawaii.  To make a long story short, after lots of drama trying to get this MRI done, it turned out that the hip MRI was fine. No labral tear - no reason for the pain I was experiencing.  He ordered a lumbar spine MRI but at that point I was getting pretty nervous that it might not be orthopedic in nature and decided I would rather go through my oncologist for further testing.  

The day after Thanksgiving, I experienced the worst pain I have ever felt in my life as my back went into full spasms and I felt like my bones were being crushed.  I was in agony and tears for nearly 24 hours and poor Mike was terrified.  At that point, I started getting nervous something serious was going on but also thought maybe I just over did it on Thanksgiving, which we hosted at our house.  

The following Monday, I had my usual scans and received the results later that week.  Dr. F informed us that everything looked stable and he thought we should stay on my current treatment plan.  Although this was good news, I didn't feel right about it.  And once I read the scan reports, I felt even worse as I questioned a few things that were noted that I didn't think were there in previous scans, although I know that Dr. F always says that these reports can fluctuate greatly in the amount of detail that is provided depending on which radiologist reads my scans.  It was the first time that I didn't feel happy to hear what was supposed to be good news.  I was prepared for bad news based on how I was feeling and because I was still having a lot of pain, it was hard to feel the normal relief I get when I hear good news from Dr. F.

Dr. F ordered a lumbar spine MRI to further investiage the cause of my pain.  I figured that I must have a herniated disc since the other scans were good and I was hoping that's what the MRI would show.  Unfortunately, last week I received the news that there is a new tumor that has grown out from my T12 vertebra in my spine and this tumor is causing compression on my spinal nerves, which is likely responsible for the pain that is radiating to my hip.  

This means that my current treatment is no longer working and we need to change the course.  Dr. F has switched me from Tamoxifen to Arimidex and decided that I would also benefit from radiation to my spine.  I saw the radiation oncologist, Dr. M on Tuesday and will fill you all in on the radiation plan in my next post.  

Of course the news of my first progression is difficult and something I was hoping I wouldn't have to deal with for years to come.  But unfortunately, this is the reality of living with metastatic breast cancer.  The cancer starts to outsmart the treatment, the disease progresses, and the patient has to move on to a new drug - until there are now new treatments to try.  I am grateful for the 3 stable years I had on Tamoxifen, and for the great quality of life I experienced.  Aside from joint aches, hot flashes, night sweats, and fatigue, I felt really great on this treatment.  I am praying to feel just as good on Arimidex and that it helps me get right back into a stable state with no active disease. 

I have started my new drug and will begin radiation next week.  I would love some extra thoughts and prayers if you can spare them.  Specifically, that radiation is able to completely zap this new tumor out of my body, that the new drug stops the cancer from further growing, and that I get some relief from my hip pain soon.  I am unable to sit or lay down without pain and it's made it very hard for me to get through the day and to get any rest at night.  

I am handling this news in stride and deep down I think I was prepared for it.  I knew something was going on in my body and I believe God prepared me and gave me some peace about what was to come.  I am feeling confident in my new treatment plan, in my incredible doctors, and that God will continue to watch over me and let me hang out for awhile longer because there is so much I still want to accomplish in this life.  

I hope you all had a very Merry Christmas!  Thank you for checking the blog and thinking of me.  I appreciate at all of the love and support so very much.  

I'll update more soon (I promise!) about radiation and where we go from here. 
love,
Meghan 


 A little sneak peek of our adventure in Maui....
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A new addition to our family!  Meet Gracie! 
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On Tuesday I had my radiation simulation, including another awesome tattoo...
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My Friend NED!

6/14/2013

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Yesterday, I was introduced to NED!  "No evidence of disease"!!!!   

I saw Dr. F for my results of my latest round of scans and immediately burst into tears when they told us that the scans looked great and that I was still boring just like 6 months ago.  :)  But, what shocked me even more was the fact that the bone scan said there was no evidence of metastatic disease in my bones!  Well, hello there NED!!!!  

Now, let me please explain that Dr. F doesn't put a whole lot of stock in those words. He said he doesn't get "overly excited or impressed" and that these scanning machines are not perfect.  He says it's much like looking down from an airplane and trying to see a dandelion in a field.  It's near impossible to spot just one but if there are a lot of them in a big patch, you can see them easily.  So, he basically means I still could have little isolated cancer cells in my body but right now there isn't enough of them to be detected on the scans.  I have always understood this and I am okay with that.  I understand that sometimes people hang their hats on "NED" and then they have a scan a few months later that shows a change and they have a huge let down after feeling like they were as close to "cancer free" as possible. 

I truly understand that and I have always been happy to hear that I am "stable"...but for right now...for just a few days (or months)...I am going to be extremely thrilled that I am hanging out with NED!  I know it doesn't mean I am cancer free or that I am cured.  It means that right now my medicine continues to work and keep me in remission.  It means that I can continue with my current treatment.  It means that my bones, although still damaged, are healing.  And most importantly, it means that I can continue having a really amazing quality of life.  The few side effects I experience from my meds (hot flashes, fatigue, joint aches) are so minimal in the scheme of things and I don't let a day go by where I am not grateful for that. 

There are still little things we will keep an eye on.  My platelets are on the low side and I have been having a lot of issues with bruising.  If those continue to drop, I will have to have a bone marrow biopsy to see if my meds are impacting my body's platelet production. There are a few other minor issues I have been having but nothing big and nothing that Dr. F is really worried about.  

THANK YOU, THANK YOU, THANK YOU  for all of your support, love and prayers!  I couldn't be happier and couldn't be more grateful.  I do believe in the power of prayer - I believe in God's ability to work miracles and I am not giving up the faith that maybe there is one in store for me.  It has taken me this long to truly be able to even put those words out in the universe, but maybe - just maybe, I could live a long, healthy life in complete remission without this awful beast robbing me of my future.  

For now, I am believing that this can happen for me and I will continue to fall asleep each night with a smile on my face...dreaming of NED.  ;) 

With a grateful and overjoyed heart, 
Meg xoxo
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Oh Happy Day!!!...

9/8/2011

44 Comments

 
We finally received the good news we were praying for!  Thank you, Lord!!!  And thank you to all of you, our amazing family and friends for your non-stop prayers and well wishes - it definitely paid off!  

I am totally wiped out from an extremely long and exhausting day, so hopefully I include all of the important details.  We had long appointments with both Dr. F and Dr. B today which meant we were at doctors offices from 9:45am until 3pm with a one hour break for lunch in the car while driving.  It's all worth it though, for such great news! 

We met with Dr. F first and he informed us right away that the test results looked great!  He said that the CT, MRI, and bone scan showed the following...
--breast tumors demonstrate significant shrinking  
--axillary lymph nodes demonstrate shrinking
--there is evidence of healing in the bone throughout my spine
--no new evidence of disease! BOOYAH! (okay, not exactly Dr. F's words) 

Overall, this was the best possible news we could have received and we couldn't be more relieved and thankful!  I am so grateful that these past five months of chemo haven't been for nothing, and that the cancer is actually responding well.  Dr. F was very pleased and said that we are definitely headed in the right direction.  He said that the imaging studies will always show abnormalities throughout my thoracic spine where there has been cancer, but now there appears to be evidence of healing.  He even said that I may not have to have radiation to my spine, which would be wonderful!      

The rest of my appointment with him consisted of formulating our plan of where we go from here.  So, here's the latest...
--start hormone therapy (Tamoxifen) - a daily oral medication which will interfere with the activity of estrogen, which is what is feeding my cancer 
--start Zoladex - a monthly injection to suppress my ovary function.  This will shut down my ovaries and stop them from making estrogen so that the tumors cannot get the estrogen they need to grow.  This also means MENOPAUSE!  Just another "perk" of having the big C.  ;)  Who would have thought I would start menopause at the age of 29?! 
--after surgery, start Denosumab - a monthly injection to strengthen my bones and try to protect them from further damage due to metastasis 

So, today I started the Tamoxifen and received my first injection of Zoladex - a humungous needle which is injected into my abdomen = fun times!  I will have a follow up appointment with Dr. F in 6 weeks and will be re-scanned every 6 months at the absolute latest - it could be earlier than that if I am having any new symptoms or concerns.  

After a collective high five between Mike, Mom and I, we nearly skipped out of Karmanos and headed over to Beaumont to meet with Dr. B.  After a physical exam and review of my imaging results, Dr. B also informed us that she was very pleased with my progress.  She said that she didn't expect my cancer to respond so well to the chemo since it normally responds best to the hormone therapy.  We met with Dr. B for at least an hour, discussing all the details of the surgery, what I can expect, and what recovery will be like.  Dr. B's wonderful nurse, Linda then used this great new device to take some measurements of my arms in order to compare them to post-op measurements to track any possible lymphedema.  Lastly, we finally set our date for surgery.  Friday, October 14 is the big day for the bilateral mastectomy.  I am definitely nervous about it but happy to finally have a plan and know when it will be.  This will give me some time to get my energy level and blood counts back up since they are still pretty low due to chemo.   

So, that's the latest and greatest news!  More upcoming appointments on the horizon are...
--meeting with Dr. M my plastic surgeon on October 3 for final preparations before surgery and the start of the reconstruction process
--meet with another new team member, Dr. R who is a physical medicine and rehabilitation doc at Beaumont to take more pre-op measurements and assessments.  He will also be the one to let me know what my restrictions after surgery are and when I can start physical therapy in order to get my range of motion back in my arms....good thing I have some connections to some awesome PT's :)  
--meet with another new team member, Dr. R who will be my radiation oncologist.  I will meet with her before surgery to discuss our plan for radiation to my right breast and chest wall, and possibly my spine.  Radiation will start about 4-6 weeks after surgery.  

As you can see, it's going to be a long road ahead.  But what better motivation to forge ahead than receiving such terrific news, like I did today!  I can't thank you enough for being there for me - for all of the texts, phone calls, emails, blog posts, and facebook messages I received in the last couple of days.  It truly makes me feel better to know that I have so many people praying for me - you guys are the best!  Keep the prayers coming because we still have a long way to go.  But for now, I will bask in this great news.  For the next five weeks, I am going to focus much of my attention on trying to regain my energy, slowly begin exercising again, and taking the absolute best care of myself in anticipation of surgery.  And you know I will also be mixing in fun times like this Saturday at the U of M game (thanks Aunt Clare!), a friends wedding, taking my hubby to a great concert, many birthday parties, strutting my stuff in a charity fashion show, our fundraiser on September 25, trips to the cider mill...and much more!  Thanks again everyone!  And thank you God for answering our prayers! 
xoxo, Meghan   

In honor of the coming of my favorite season, here are some fall pics from a wonderful trip to the U.P a couple of years ago...
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    My blog to keep you all 
    up  to date on how I am living this crazy, beautiful life while dealing with Stage IV breast cancer.


    The Cliffs Notes version of my life with breast cancer...I was diagnosed with Invasive Lobular Breast Cancer on March 23, 2011 just 2 days after turning 29 years old.  Shortly thereafter, we discovered the disease had spread to my spine, thus making it Stage IV, otherwise known as Metastatic Breast Cancer.  It's been a roller coaster of ups and downs ever since, but I'm just grateful to be here! 

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