Chemo Update--almost 5 months
Five months.
Well, a couple weeks shy of five months.
This research study has been tiresome.
This Chemo (drug) has been rough.
I had all the paperwork.
I read all the common side
effects. I read all the “less common”
side effects. I read the “other not yet
known” side effects.
·
Nausea
& pain(different from my usual nausea & pain)
·
Extreme
tiredness; insomnia
·
No
energy
·
Brain
Fog (“now where did I put my JMU Alumni
hat; I had it a second ago?” “Mom: um, you’re WEARING it!!) yes, it’s laughable.
·
Then I got experienced the “Not so
usual side effects” NOT LISTED: facial skin sores and worse scalp sores
leading to chunks of hair falling out and pain on the scalp that even the
warmth or any temperature of water hitting the scalp wreaks pain (Yes, I’m on a
topical medication for both indications, but still it’s no fun).
It’s not been easy. There are days where I’m stuck on my recliner,
listening to music, sermons online, etc). I’ve wanted to quit SO. MANY. TIMES.
But……
---what stood out to me was the fact that this drug could
help me now and in the future.
It’s has promising results of decreasing and even possibly
obliterating my NF tumors, which can [possibly] in the future, turn
cancerous. I’m considered high risk for
breast cancer. It was for this reason, I
agreed to participate in this research trial.
I didn’t go into this lightly. I
prayed about it and felt it was something God was leading me to do this. Visits
to the Oncologists every month (along with bloodwork, EEG, ECHO procedures, etc
has depleted a lot of energy out of me; plus I’ve been going to UVA for other
health concerns non-related to this research trial). Back in April, I mentioned that wasn’t seeing
any superficial results; that same day
I was introduced to one of the other individuals in the same study whose same
side of the face target tumor (per protocol of this study) had completely vanished
just after a couple of months on the drug! I was looking for that!
My oncologist had to keep reminding me that it takes time for the
medication to work and each person responds differently. Then…..
……I started to wonder if it would really work for me, after
all, I’ve always been a unique patient who responds to medication very differently
than others. I can quit anytime I want (according
to the research program). My impatient
self turned into disbelief in my doctors, which ultimately is distrusting my
Lord and Savior. “I WANT. TO QUIT! I’m
tired of all the side effects!”
Yet in all this, there is beauty in this hard….
On May 3, I had my first MRI since I started the chemo
drug. It was very stressful, but we got
it done. Side note: please do
not second guess or try to offer “easy suggestions” to someone who has
claustrophobia. Believe a person when
he/she says a certain amount or type of medication doesn’t work due to previous
experiences. No, it’s NOT a mind over matter thing nor is it “in your head” or
“deep breathing” will help neither will closing your eyes (stop and think about
that for a minute or two). It’s a real
thing. ANYWAY, The results came in several days later on the 6th
and the radiologist-oncologist read the exam and it show the that TARGET TUMOR has indeed DECREASED in size in comparison to
the baseline MRI taken in December! When
asked by how much has it decreased, all Dr. Schiff (my oncologist) told me was
“it decreased slightly but visibly and unable to determine percentage of
reduction”. What does this mean? Although, it means that even though we don’t
see the reduction of the superficial tumor on any part of my face (or body),
the medication seems to be working internally. This is good!
PRAISE GOD!
The plan for now is for me to stay on the same course of
medication: 21days/28days—2x/day regiment. After August, my trips to UVA oncology
will be lesser, but I will still have to have MRIs every 3-4 months to track
progress of the tumors as well as get EEGs and ECHOs. Please be in prayer for my heart
(physical). They need to keep a close
eye on my heart to make sure the medication does not interfere with the way it
pumps blood through my body. I had an
initial ECHO in December which looked good; as well as one in February which
looked good. However, this recent one on
the 4th showed slightly less
activity in the left ventricle to pump blood.
HOWEVER, the oncologist-cardiologist isn’t too concerned for now because
he thinks it could be the images weren’t taken clearly by the technician or
something happened why the ECHO was being done.
They will redo the ECHO in August and then compare all three to the
baseline in December before making any decisions. If the oncology-cardiologist isn’t concerned
I’m not either. Add in: these teams of
doctors are absolutely wonderful. They
get to know you not just on a professional level but on a personal level as
well. I’m not called “Participant 055-3”,
rather I’m Becky or Rebekah (whichever they use). One of the Physician Assistant oncologist has
the greatest sense of humor with me; and earlier this year, we enjoyed talking
about our traditions for Chinese New Year (he’s Asian as well).
The Lord continues to remain good and faithful in His leading me
through this. His mercy and grace is
what is getting me through this as well as your constant love and prayers. Thank you so much for those of you who have
been praying and who have personally reached out to me. If I haven’t responded to anyone (sorry!!), I
have gotten your notes, cards, texts, etc.
As you can understand now, all of this is so tiresome (and I forget
easily). I do what I can and go places
when I can. Please continue to pray for
me.
A favorite of mine for a while now.....
Comments
By the way, if your iPad is draining too fast, maybe you are running too many apps in the background. If you could deactivate some apps, that might help cut down the power drain.