Decision, Goodbyes, True Healer
EIGHT MONTHS---REALLY?
In many ways, I can barely grasp that I have been on this
chemo medication for 8 months already.
This means, I had 9 visits with
the oncologists, 9 blood draws, 4 ECHOs,
4 EKGS, 3 neuro-ophthalmology exams, and
3 MRIs (related to my chemo drug—it includes initial baseline check, one in
May, and one just recently on August 25th which went much smoother). I actually had a 4th one but it’s
unrelated to the chemo drug, but still related to my disorder).
If
you remember from my previous posts, the chemo meds has been really hard on my
body; there were so many times I really wondered how much longer I could endure
the “fire” on my scalp, or the pain in my legs. Back in July, the pain in my scalp, face
started to get extremely bad. After
completing my 21 day cycle/28 day cycle, we noticed that even with my usual
scheduled one-week break from the medication, my sores continued to be inflamed
and “angry” looking (I was still using all the prescription medication I was
given). The team decided that I needed
another week off my medication.
Eventually, they decided to just give me a total of 3.5 weeks off of the
medication to allow my sores to heal. At this point, I NEVER had this bad of a
reaction to the medication. The sores
were awful and the pain was terrible. I didn’t know what to do regarding this
medication, except pray for healing—not just healing but discretion of what to
do. As I mentioned in my last post, it’s something I’m still praying about and
would ask prayers as well. The side
effects are tough and at times very hard to manage; but my oncology team is
really working with me to help me get through this (they’ve made referrals to
Dermatology for my scalp and face sores; they’ve also referred me to Palliative
to help address my pain issues from the medication) . Along with the 3.5 week “vacation” from the
medication, the oncology team also decided to reduce my
medication by 2.5mg total. They said
that with the decrease, I should not lessen the job of what the medication is
supposed to do, but just help reduce the side effects. Please pray that this will help with the side
effects. I’m grateful for the reduction
of the medication and finally for about 85%-90% healing from my last scalp
“burn”. The first MRI in May showed some
reduction (don’t ask by how much) in tumor size. However,
this past MRI (August 24, 2021) didn’t show any reduction in tumor size;
but, in the words of my oncologist, it isn’t anything to be discouraged or
disappointed; we still have another one coming up in December.
So, here I am. Again. Trying to
decide if I should or shouldn’t continue on with this chemo trial or not. Do I endure the side effects? Do I wait and
see if the referrals and other doctors can offer solutions to help me get
through this trial drug? There is an
abundance of good coming out of it; and this trial has been extended to 4-years now because SpringWorks Clinical Trials is pushing hard to get the
governmental approval! Sooooo,,,,
1.
Does this mean I had to resign the
contract? Um, not
necessarily, but I did.
2.
Does it mean it will take them 4
years or more for the government to approve this drug? NO! It
COULD be approved next year for all we know.
It’s just a precautionary step we all have to take a sign.
3.
Does it lock me in for 4 years? NO, It doesn’t. Right now, I still don’t know what to do
besides pray and seek the Lord for guidance.
He is with me through
this though at times I feel alone (oh, and there are so many days and nights I
spend crying)! There are days I felt no
one was listen, or was it because I just
wanted an answer right away? Then, I
realize that God continues to be faithful to me; His mercies are evident in
every step of the way, even when I don’t see it right then and there.
In
other news……
I
learned last Friday, August 27th, that my long-time favorite
Neur-ophthalmologist, Dr. Newman may no longer be seeing patients (I use “may”
lightly because from what I was told it sounds like he’s taken and undetermined
amount of leave). Throughout my life, I’ve had several doctors
in my NF team come and gone. Some has
stayed even until now; and there are those who left due to retirement or
wanting to teach. This doctor has taken care of me for almost my entire life;
in fact, he is the last of my original NF doctors who has taken care of me
since I was a wee little one. Dr Newman
happened to be one of the two eye doctors that are consultants on this oncology
trial medication (to ensure safety of the eyes). Because Dr Newman has a rapport with me, the
oncology team decided to put me with Dr. Newman. I am now on the schedule with a “new-to-me”
doctor. He’s name is Dr Cusick.
It’s so true when people say 1st impressions are the BEST,
because I think this dude is A-MAZ-ING!
He took time to explain things to me and showed me how the back of my
eye looks in the pictures on a computer screen in order to show my way he isn’t
too concerned about some of my questionable eye issues. This is not to say Dr Newman never explained
things to me, but he explained things so fast on a piece of printed paper; I
still got confused. Welcome to the next
generation when computers are being used!
As
I processed the high possibility of “loosing” the last of my original team of doctors who took care of
me from the early stages of my life, I’ve had to keep reminding myself of the
One true Healer & the One true Physician that I don’t have to fear of losing
at any time is Christ. And because of
this, I can trust His leading me to make the decision whether to stay on this
trial medication or quit. Either way, I
choose to follow His Leading, and not my wants. So really, my REAL original first AND ONLY doctor and physician IS.MY.LORD. Himself. And, in essence, that's all I need.
God is good, God is good
Where is his grace and goodness known?
In our great Redeemer's blood
Who holds our faith when fears arise?
Who stands above the stormy trial?
Who sends the waves that bring us nigh
Unto the shore, the rock of Christ?
Our hope springs eternal
O sing hallelujah!
Now and ever we confess
Christ our hope in life and death
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