I am not even sure where to start.
I think I may have started a great majority of my posts that exact same way, especially now that I only seem to write when I have a bigger update.
Actually, I have a good place to start....IT'S MY BIRTHDAY! I feel so grateful to simply wake up and inhale that first big ole' breath today. I know that sounds so cliché but once you have been through this kind of journey, you realize that it's anything but.
While this will likely be the most uneventful and bizarre birthday I have ever had (considering we are basically in lock-down mode over here), I am just thankful that I am with my favorite human and two fur babies in our cozy home that we love.
Onto this less fun news...
Back in December, I started experiencing increased low back pain, with occasional radiation of pain down into the right side of my butt. At times, it escalated dramatically and became a very deep, gnawing pain. Right before this started, I had been battling a bad cold that lasted for several months, and then I experienced the death of three dear friends within a ten day period of time. So, I attributed the pain to prolonged standing in heels at the services for these friends, and increased stress to my back from so much coughing. I remember being nervous for our road trip to Asheville over New Year's because sitting for too long also became painful, and I was also concerned that I wouldn't be able to hike. Luckily, I was able to find ways to get comfortable in the car and we had a wonderful time with friends. My pain eventually subsided.
Throughout January and most of February, I felt great. I was making it to the gym regularly, working full time and travelled not only to Asheville, but also to Florida to visit one my besties and to Denver for work, and to squeeze in time with more friends & family.
On Monday, February 24th, I started having some radiating pain down my right leg. I have a lot of issues throughout my spine due to this cancer, including a herniated disc. So, I thought I might have just overdone it. We had gone hiking three days that week, I had been doing more yoga and I figured I needed to just scale back a bit. But, as the week progressed, so did my symptoms.
By the end of the week, I was unable to sit down for more than five minutes without intense pain and burning down the back of my right leg. I could no longer sit at work, which thankfully we are on our feet almost all day anyway. I would cry on my drive home from work each day; unable to find any relief while seated in the car.
That Friday night I watched a movie with Mike while standing up. There was no other position of relief...not sitting, not laying on my stomach, side or back. Nothing. Night time became unbearable. The pain started to elevate to a point that not only left me in tears and crying out for relief, but it would also induce a bit of an anxiety attack; leaving me desperate for relief and Mike asking on more than one night if he needed to take me to the ER. Of course, I always said no.
As a physical therapist, I started to became concerned. I knew how my symptoms should respond if this was an orthopedic issue. Red flags were popping up in my mind, but I held out hope that there was still a chance it wasn't cancer.
That weekend was really tough, to say the least. If I remained standing, I was okay. The second I would sit, I would be in horrible pain once again. The following Monday, I called my oncologist to say that I needed help. I couldn't take the pain any longer. They prescribed me a nerve pain medication, which provided some relief but not enough. By the end of that week, they prescribed a steroid pack to decrease the inflammation and attempted to move up my scans but couldn't. They were already scheduled for March 16th, which was just over one week later. So each day, I have just been getting through the best I can; standing as much of the day as possible, focusing on deep breathing through the pain when I have to sit, and taking all sorts of measures to survive the spike in pain at night.
Last Monday, March 16th I headed to Karmanos on my own for scans. Mike wasn't allowed with me due to new rules surrounding the COVID-19 virus. I spent the day receiving a full body bone scan, chest/abdomen/pelvis CT, thoracic and lumbar MRI.
I was already preparing that this would be an emotional week for me...as a self-admitted sensitive, sentimental soul. Scans, birthday, anniversary of my diagnosis...and then throwing in this insanely scary and uncertain time with the coronavirus and basically being in lock down at home since I am immunosuppressed. So, we waited for my appointment on Thursday and I just prayed the results would show what on Earth was causing all of this pain.
And they did.
This devious disease decided to basically eat up part of my sacrum (tailbone) and press into the nerves that exit there.
...."destructive lesion in the right hemi sacrum abuts the exiting right S1 nerve root and severely compresses exiting right S2 nerve root." Yikes. Well, that explains the pain alright!
I wasn't surprised, nor was I sad. I was grateful something was found and that I knew I could have radiation to blast this tumor to bits and get rid of this pain. But somehow along the way, I seemed to overlook one major factor. That I would now be booted from the treatment regimen I have been on for over three years and have to move on to something else.....something new, something different, something we don't know will even work...something unknown.
With my mind whirling a bit, I tried to focus as Dr. F. explained four potential options. (Note: once again Mike wasn't allowed to go with me so I felt extra pressure to remember all of the details.) I won't get into all the various options and pros/cons right now because I'm already long-winded enough.
Basically, his first choice is a drug that was just FDA approved last year and acts upon a mutation in the tumor. The only way to know if this drug would potentially work for me is to know if my particular tumor has this mutation. That means it needs to be biopsied.
Problem #1 - Dr. F explained that he wasn't sure it could be biopsied because of the location of the tumor.
Problem #2 - If it could be biopsied; we would have to delay radiation (which is where I will get the pain relief from!) until the biopsy is completed because radiation will destroy the tumor
Dr. F then explained they still have my original tumor tissue from my breast from 9 years ago. He could send that in to be test to see if it has the mutation. But...
Problem #3 - No one knows if the mutation survives 9 years of tissue preservation.
So, while Dr. F went to go work on finding out about the biopsy, he sent Dr. M, my radiation oncologist in. We went over the side effects of radiation to this region and what the regimen will look like. I'll post later about all that. He said he wanted do start as soon as possible. So, after I received the rest of my treatment on Thursday (shots in the tush and an infusion for my bones), I had the prep work done for radiation. Again, I'll post more later about that.
Meanwhile, Dr. F returned and had good news...the radiologist said he thinks they can get the biopsy of the tumor! Yes! But...
Problem #4 - It could be 1-2 weeks because they are short staffed due to the need for help managing the Coronavirus. Unfortunately, they are low on anesthesiologists. So, Dr. F said we will give it one week to wait and then we must start radiation.
This is where I was going to ask for your prayers....that I would get scheduled for a biopsy next week. But guess what?! I already did! WOOHOO!
They called yesterday afternoon and my biopsy is schedule for Monday morning. I will go under anesthesia and they will biopsy the tumor in my tailbone. It will be mailed off to a lab and hopefully take no more than 2 weeks to receive the results. In the meantime, I am off treatment.
So, my next prayer request is for doctor completing the biopsy to get a good sample, and for that to test positive for the mutation so I can be eligible for this treatment.
There we have it, folks. That's where things stand for now.
Oh, and I forgot to mention I got laid off on Wednesday....can you believe the insanity of this week. It's almost comical at this point. The good news on the job front is that we hope everyone will be rehired once the virus is contained and we have patients to treat once again. But man, Jesus take the wheel!
So, now I'm off to enjoy the sunshine of this chilly spring day. To soak up not only the Vitamin D, but all the love that I am being showered with lately. I am truly overwhelmed with gratitude for the incredible family and friends that I have. I can never thank you all enough.
ps- Look at the love I woke up to this morning....a surprise visit from family singing me "happy birthday" after decorating our front yard in balloons, pinwheels and signs!
I FEEL SO BLESSED! ❤️
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