The Next Two Years?

 

For all of us, this past year has looked differently than the other years we’ve had. The uninvited ugly virus barged into our lives and caused havoc.  Many of us had to adjust to new schedules and routines, things had to be canceled or rearranged, and the term/phrase “emergency procedures” took on a whole different meaning.   Yet through it all, God remained (and still is) faithful to His children; He never forgot us, nor did he leave us in anyway, although at times it seemed so.

During this pandemic (in the beginning of the year), ALL of my medical appointments got canceled.  You can read my previous posts: Persevere Until the End  to see how I was responding during this time.  (NOTE: Please don’t think the virus wasn’t hard on just me, I know it is hard on anyone and perhaps even harder on others than it is on me).   When I was finally able to get treatment for pain control from my Pain Management doctor, I was thrilled. (This was in mid August 2020).   In September, I had my regular 3-month follow-up with my doctor—this is where things started to unfold in my health journey.   It is where things became daunting, scary, yet extremely thankful in more ways than I could imagine.

When I saw my PCP in September, I expressed some frustration to my PCP doctor about how much pain I was in with some of the NF tumor on my face and the back of my scalp/neck.  My wonderful UVA surgeon (whom I greatly respect) told me that although it is operable, he didn’t want to risk it because it’s a very invasive surgery and will require a huge skin graft as well as a sure possibility of a long road of rehabilitation. While I greatly understood this and trust his judgement, I asked my PCP if she knew any alternatives, besides my asking my pain management doctor for injections.    She asked me if I was ever seen at the “NF Clinic” at UVA. It was a shock to me because I’ve never knew UVA had a “NF clinic”.  She explained to me that it’s not a “clinic/office” per se, but it’s a group of doctors working together that is specialized in different areas of the NF tumors.   As you know, UVA is a hard place to get an appointment, so I wasn’t optimistic about getting an appointment any time “soon”.   The first time the NF neurology called, they told me the “first available won’t be until December” and then Genetics couldn’t see me until February 2.  The very next day, they called again and told me that the doctor wanted to see me ASAP and scheduled me to be seen the coming Monday (I’m thinking, what happened to “first available won’t be until December?” and then genetics called and said that I needed to be seen before the end of the year and rescheduled me to November. (At this point I’m thinking: “okay, someone please explain how “first available” can suddenly be changed to the quickest/closest time….  Perhaps saved for emergency visits”? ).    

The next thing I know (It’s the beginning of October), I wasn’t sent to just any NF neurologist, but an oncologist neurologist.  As he explained, More and more people with Plexiform NF turns out to have cancer and it’s really important to keep working with an oncologist  neurologist AND a geneticist for my own health safety.  Thirty (30) minutes after my visit to the neuro-oncologist, UVA NF genetics calls AGAIN and tells me that I needed to be seen ASAP, so I agreed I would go back to UVA that Thursday (by this time my heart is throbbing).  When I went back to UVA two days later, my Genetics Doctor explained to me that my Oncologist has marked me as an “Ambulatory Patient”.  Yes, it means what it sounds like.  Every visit, every test from then on was pushed and marked urgent.  Why?  Well, somehow in the midst of “growing up” at UVA, I fell through the cracks with UVA genetics AND tumor neurosurgery).  Although, back when I was growing up, NF was very rare and the science behind it was little to nothing, my oncologist and genetic doctor told me that I still should have been seen regularly because ALL tumors can carry the risk of cancer.  For plexiform NF, tumors can form anywhere from the spine, hips, and for women, more likely breasts. It was here that I was “rushed” to see an oncology breast physician as well.  Long story short, With my NF and family history, I’m high risk for breast cancer…. I need to be screened every 6 months. UGH!   A week ago, I had a biopsy to see what kind of tumor I had; and of course, it was NF. Also, it did show that I have the protein markers that could carry cancer, yet it doesn’t mean I will or could get cancer.  It all depends on whether or not the protein markers can crash through the cellular wall.

So what’s the plan?

Growing up, I don’t remember a time when having these tumors not bothering me in a physical matter. I remember wondering if these tumors would ever go away or stop growing.  I always would wonder if I would ever live a life pain-free.  I remember thinking to myself “isn’t there something scientist can come up with?” or  “There are other drug remedies for other tumors out there, why not NF?” I’ve had so many dear friends asks me theses same questions.  The tumors continue to grow and continue to be painful and tiresome.  I’ve prayed for relief—a medical marvel.

Well friends, I’m happy to report that SpringWorks (a clinical oncology drug development pharmaceutical agency), has come up with something that can help NF patients! However, it’s still in the trial phases. 

When I was going through my various medical appointments at UVA (mostly new referrals), I had to undergo so many scans and tests. Unbeknownst to me, my Oncologist and his team was watching me closely (and “studying” me and determined that I would be a great candidate to participate in this Phase 2 trial of this drug. After he explained how it all worked and what this new medication was about I agreed to take part of this clinical trial (my own Oncologist is one of the head research leader for this clinical drug trial). This drug is classified as a chemotherapy drug because it is designed to shrink, take away, block the protein molecules from entering the cellular wall, or even possibly stop the growth of the tumors.  This past Monday was my first dose and I’m taking it 2x a day (it’s 3 little pills that has to be dissolved in 5mL of water).  The drug so far has minor side effects on me: pain (different kind of pain than the NF pain—more like muscular stiffness pain), dizziness and nausea (which isn't good since I already struggle with nausea at times); please pray that this subsides as I continue to take this drug. There are NO placebos in this trial drug.  I made sure of that because I told my doctor that if there were placebos I wasn’t going to waste my time (or energy) going to and from UVA.  

Please pray for endurance—this trial phase will last TWO years.  I also have a significant amount of other types of (non-pain/NF related) appointments coming up along with my chemo-drug follow-up every 4-6 weeks to make sure it working well into my system.  I’m excited to see how things will be unfolding and how the drug will work with me.  No matter what, I know that God will remain faithful and loving in every aspect and every circumstance. I’m so grateful that God led my PCP to make a referral to the right neurology team at UVA; yes, my months are booked up with appointments almost every month this year; but God’s perfect plan remains unchanged. 

#ihatemedicine