The waiting game....It's never fun, but in the midst of a global pandemic, it has been taken up a notch.  It has been longer than expected since I have shared an update and that is due to the fact that I was waiting for more information to actually update you on.  

Last week marked 6 weeks since I had been off treatment and over 5 weeks since the biopsy of my sacrum.  Just as a little recap, that biopsy was completed in order to test whether my cancer has a particular mutation that would qualify me for a new promising drug, since we have come to another fork in the road regarding my treatment plan.  

I was told the biopsy results would take two weeks for the independent lab to complete, but I didn't hold my breath knowing full well that everything is delayed these days in the midst of COVID-19.  While I awaited those results, I completed 10 radiation treatments, started to have pain relief, got off the meds that made me feel lousy, felt super grateful and relieved...and then the pain returned.  It's been a bit of a rollercoaster, which seems to be par for the course when I'm in the midst of a recurrence.  The good news is that after re-introducing the nerve pain medication, I am feeling better with minimal side effects...bonus! 

In all honesty, I have actually been surprised at how patient I have been while waiting for these results.  (Patience is definitely not one of my virtues!)  I have been able to let go of any stress or anxiety about it, knowing full well that it was entirely out of my control.  But, come Week #4, I was hoping for some type of update.  I called my nurse  and was told that the lab had completed 3/5th's of the testing.   Fast forward to Week #6, and I was starting to get a little antsy.  I checked in once again to see if there were any updates, and that's when the rollercoaster ride continued.

The first thing my nurse said was, "the biopsy is positive"...and I literally said, "yes!" out loud.  However, my excitement and relief were quickly dampened when she said the lab did not have enough tissue to complete the testing.  The "positive" aspect she was referring to was that the pathologist reported that indeed this tumor is metastatic breast cancer that has spread to my sacrum - which is what we already assumed.  The fact that there wasn't enough tissue to complete the testing for the mutation was devastating.    

It has been very unsettling to be off treatment for 6 weeks; the longest I have ever gone in 9 years living with MBC.  And now to top that off with feeling like that biopsy of my bone (which was not fun), and the subsequent 6 weeks of waiting...has all been a  total waste.   

The plan now is as follows:

• A sample from my ovaries has been requested to be sent to the lab for testing.  My ovaries were removed 3 years ago and did test positive for MBC, so the hope is that there is enough tumor there to test for this mutation 
• The turnaround time for this is usually 3 weeks, but who knows during these uncertain times.  My nurse did request it to be expedited.
• I have been put back on my previous medication as a safety net of sorts until we know the plan moving forward.  Although I did have a progression while on it, it has kept other areas stable so at least it's something!  Truthfully, It also gives me a tiny bit of peace of mind.
• We will continue to wait for the biopsy results in order to decide how to move forward.  My oncologist and I discussed Plan B and C if the biopsy is negative, and they are much less desirable options.

There are a few other important considerations that further complicate things.  The one that weighs heavily on my mind is that no one knows if this tumor mutation survives in tissue that has been preserved for many years.  There is a great chance that even if I have a positive mutation, the test will be negative because the tissue they are testing is 3 years old.  On top of that, what if there still isn't enough tissue there to test?  Do we have to wait until my tumors grow large enough to have a painful biopsy yet again in order to have a complete test?  All of this scares me.

To top it all off, communication with my treatment team has been poor and for the first time in 9 years, I have felt very in the dark and have been left with a lot of unanswered questions.  

For now, I am focusing on the hope that being back on some type of treatment contains my disease and hoping/wishing/praying/pleading that there is enough tissue in my ovaries to complete the testing and that the result is positive.  

I continue to practice letting go of what I cannot control and will continue to live, love, laugh and soak up every moment I can....despite remaining on this rollercoaster.​
​
​xoxo, Meg

I had a week to think about this latest news, to read the MRI reports and luckily have an impromptu appointment with my radiation oncologist last Thursday when I ran into him at Karmanos while there for blood work and an injection; all before meeting with Dr. F on Thursday morning.

The MRI report and meeting with my radiation oncologist revealed cancerous activity at more than one place in my spine and also elaborated on some of the damage that has remained there for the last few years due to cancer, radiation and other side effects.  The good news is that over the last two weeks, the pain in my back has subsided substantially.     So while my radiation oncologist said we can definitely radiate this area (even though part of it has already been radiated once), he would suggest waiting to play that card until I absolutely have to.  And I agreed.  Radiation to the spine carries a great deal of side effects, not only potential damage to the spinal cord, but also damage to surrounding structures.  The last bout of radiation I had to my spine left me feeling like I was swallowing glass and resulted in dropping too much weight in a few short days from my inability to eat or drink.  My radiation oncologist, Dr. M, assured me I can call him any day, at any time, if my pain returns and I need to get in for radiation.  He is simply the best and I am so grateful to have him on my team...and grateful I don't need his care again quite yet!  

Mom and I headed to my appointment Thursday morning, where we came with a handful of questions, but also a lot of faith in Dr. F and his opinion.  Dr. F shared that there are plenty of arguments to support changing my treatment at this point, but just as many to support watching and waiting.  These are some of the main points of our pretty long discussion together:

• Although I have had a couple new cancerous spots show up in my bones, this treatment protocol has prevented the cancer from spreading to my vital organs, so Dr. F still considers it a pretty successful treatment.
• I had a new spot show up in my lumbar spine last December and we decided to just watch it and it turned out to remain stable and hasn't caused any problems since. 
• My quality of life on this treatment regimen is pretty good.  Ever since my dose was lowered last year, I have much more manageable fatigue and very little in the way of other side effects.
• If we switch to another treatment we have absolutely no guarantee that it will be effective (in the bone or organs), and it will likely be more difficult to tolerate, with greater side effects. 
• The quicker I blow through these treatments, the quicker I run out of options...which is a very terrifying thought.  So, if we can even get another 3 months or 6 months out of this one, that would be great.

When the study was published in 2016 about the combination of drugs I am currently on, it was hailed as a huge success because the "progression-free survival" rate was 9.5 months.  I have been on this treatment for 22 months now so I am extremely grateful for that!  And if I can squeak out some more mileage on it, all the better! 

​On another note, I will be meeting with the Phase 1 Clinical Trial doctor at Karmanos in a couple of weeks to see what trials they have.  It is a scary thought for me because the phrase "clinical trial" has also felt like the words "palliative" or "hospice"....words you hear when things are extremely dire and there aren't many options left.  But luckily, Dr. F explained  it to us in a way that made a lot of sense and didn't feel nearly as terrifying.  

Aside from meeting with the clinical trial doc, Dr. F is going to watch me a little closer for now.  I will still have blood work every couple of weeks, injections every 4 weeks, see him every 8 weeks and get scanned again in 3 months instead of 6.  

I feel in my gut this is the right plan for me at this particular time.  I feel good about it - as does Mike, mom and my doctors.  So we wait...and we watch...and pray that the pain doesn't return and that these rogue cells chill out and hibernate for a good long while.

In the meantime, my blood counts have plummeted once again (never seems to be any rhyme or reason), so I wasn't able to restart my treatment on Thursday.  It does explain some of the additional fatigue I have been feeling lately.  I will have repeat labs done next Thursday and hopefully restart then.

I think that about sums it up.
Thanks for all the love and prayers!
​xoxo,
​Meg

It's not quite the exciting package one hopes for that appeared on the front porch today. No fun new pair of shoes from Nordstrom or random gadget from Amazon. This package is filled with potential to cause a range of symptoms from nausea, vomitting, diarrhea, fatigue, low white blood cell counts and mouth sores...just to name a few. But, this small box of 21 capsules is also filled with hope, potential stability and the return of healthier days. The only thing I do know for sure is that this package is filled with a whole lot of uncertainty. And although I am used to living with a great deal of it, this time the unknown seems a bit scarier.

This new medication is one of two new drugs I will be starting this week. This oral medication is called Ibrance, and is also known by the generic name of Palbociclib. Ibrance is what is known as a "targeted therapy". In very simplified terms, targeted therapies aim to attack the cancer cells without harming the body's normal, healthy cells. Therefore, targeted therapies, while they come with their own list of side effects, aren't as toxic as traditional chemotherapy agents. Ibrance is a targeted drug that blocks proteins in the cancer cell which in turn helps prevent the cells from dividing to create new cancer cells.

I will be taking Ibance daily for 3 weeks, followed by 1 week off which will allow my body some time to recover and for my blood counts to bounce back up. Due to the high risk of my white and red blood cell counts dropping significantly, I will have blood work drawn every two weeks to make sure I am safe to continue on this treatment.

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