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:
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.
Mike and I enjoyed a hike last weekend and coming upon this tree felt so poetic to me. Sometimes we are forced to bend so much that we think we might break. It's amazing what all living things can endure.
Thank you so much for your constant flood of loving words, supporting thoughts, and countless prayers. It truly does mean so much to me. Unfortunately, I found out this morning that the results of my spine biopsy are positive. This is heart wrenching news and I am completely saddened by this. I had promised Mike I would do back flips down the street if the results were negative and I know he was really looking forward to seeing me attempt this. ;) I can't organize my thoughts very well right now and I will definitely write more later - I just wanted to get the news out there because I know there are literally hundreds of you praying for us and thinking of us. Please don't stop now - we need it more than ever. Each and every time you say a prayer for me, please do me a favor. Please make sure to also say a prayer for my incredible, amazing, handsome husband Mike, and for my beautiful, strong, and fiercely supportive mom, Jan. I am more worried about them than myself, and would feel better knowing you are all looking out for them right now as well. All I want in this life is to live long enough to grow old with Mike and stare into his baby blue eyes until we are old and wrinkly. Please Lord, let this happen. I love you all and appreciate your support more than you will ever know! Tomorrow morning we meet with Dr. F to figure out where we go from here. I will definitely update everyone after that and will feel a lot better knowing treatment has started. Thanks again for your endless support and love!!!!
Mike, Wrigley and I had the privilege of having the extremely talented, Jennifer Grant do a photoshoot with us last week. It was an absolute blast and we couldn't be happier with the pictures. Please take a look at some of them compiled in this slideshow Jennifer created. Jennifer, we are forever grateful to you for doing this for us! We will cherish the time we spent with you and the images you produced forever.
(Don't forget to turn up your volume to hear the beautiful song that accompanies the photographs)
My blog to keep you all