So as the old saying goes “When it rains it pours”. Although I try not to be a negative person it
has been a rough few weeks. I’m sorry
that this is so long, but like the Tango our lives have been somewhat
complicated lately
With Taygen being diagnosed with having infantile spasms we
began a treatment with the highest hopes of never seeing another spasms. All looked good for the first week where the
treatment showed promise and the spasms occurred less regularly. Through the second week the spasms, although
less intense, were happening more frequently.
After a visit to her neurologist we tried upping the dose of the medication
for a few days and still the spasms occurred.
We are now in the process of weaning her off this one medication and
then we will begin a new medication, which has more long-term side
effects. The new medication that the
neurologist is recommending could cause long term effect to her vision, which
is already impaired due to the brain abnormalities but we would rather deal
with visual impairment then the damage and developmental regression that the
seizures could cause.
Last Monday we traveled to Roswell for my follow-up check
for Lymphoma. I was scheduled for a CT
Scan, a visit with my Oncologist, a visit with my Radiation Doctor and a visit
with the High Risk Breast Cancer Clinic for my heightened risk of Breast cancer
from the Radiation. I was also due to
see Dermatology but they initially were unable to get me in until a few weeks later-
which I had no intentions of traveling 5 hours just to see Dermatology (Again
at higher risk of skin cancer from Radiation- along with my super light skin
tone and Red hair/Blue eyes). I was
rescheduled to see them in November when my next follow-up appointment would
be.
Taygen Has been super fussy- a side effect of the medication
she is on, so Jesse stayed in the Hotel with her while I went to my
appointments alone. I was comfortable as
I had been through these appointments numerous times before and confident that
all was well.
Roswell is a beautiful Hospital- They often having someone
playing piano or singing in the main lobby its bright and they have numerous
cheerful volunteers wandering around offering snacks, candy or activities to
patients and their families. Before
heading to my CT Scan appointment I had to stop by phlebotomy to have some
blood drawn. There are 4-5
phlebotomist in a room where they all talk
between each other and the patients talking about anything from recent news,
funny jokes or anything to get your mind off of being poked. I like that they even try to match your
outfit with a colorful bandage or warrior wrap as I like to think of them.
Getting my CT Scan done was mostly uneventful- Drank contast
mixture, IV placed, Scan completed- IV taken out- another warrior wrap on my
arm then it was off to see my Oncologist.
While being called from the waiting room an elder lady came
up to the nurse that was bringing me back and told her some amazing news- She
was just given the all clear- She was in remission. She then hugged the nurse. When the nurse brought me into the exam room
she started crying. It was so heartfelt
to witness this and it brought me back to 4 years prior when I got the most
fantastic news of being in remission. The
nurse dried her tears and told me that the doctor would be in shortly.
It felt like forever sitting there waiting for the Doctor
and when he finally came in it wasn’t his typical “Hello Ms. Clark, How are you
doing, Everything looks good and we will see you in 6 months.” Before he scoots
quickly out the door to move on to save another cancer patients lives. This time was different. He started asking me if I had been sick or
had a cough- before answering I asked “Why, are my lymph nodes enlarged?” which
is what they look for with lymphoma but could also just mean an infection or
illness. He quickly responded “No, No,
No.” He must have seen how worried I
was. But he did say that I have a few
spots on my lungs, which it is unlikely for Lymphoma to travel to the Lungs and
it is more likely an infection or inflammation.
He gave me an antibiotic with hope of clearing any infections and
planned another CT scan in 6 weeks to see if they are gone- If not we may need
to have a biopsy to test. I showed him a
spot on my hand, which has been extremely dry, and he scheduled to have me see
dermatology that day to make sure it is nothing that could be infected.
After leaving the Oncology clinic I went to visit my
Radiation doctor- One of my favorites.
This Doctor was a resident 4 years ago when I was getting my radiation
treatments. She has stuck with me
through it all and has been my go-to resource for everything. After the Doctor who was in charge of my
radiation treatments 4 years ago left she took over my case. She always makes me feel better and takes
time to answer everything question I have.
She looked over my CT scan and decided to schedule a PET Scan in 6 weeks
as well, just to be sure everything is ok.
Then it was off to Dermatology to have them look at my hand.
While at the Dermatology clinic I asked if there was any
chance I could have them do the exam which was scheduled for November now
instead, since I was suppose to have it done in May. At first she said that they didn’t have time
but then a few minutes later she returned and said that they could since I was
already there. While doing an exam she
found a spot on my upper back which I have had for as long as I can remember
but had gotten slightly larger over time.
She stated that she didn’t really think it was anything to be concerned
about but wanted to biopsy it anyways and mentioned results from the biopsy
usually take up to a week to come back.
I received a phone call on Wednesday, 2 days after my
appointment, it was the doctor from the dermatology clinic – She said that it
was really good that they did the exam and biopsy because I had an early stage
of melanoma. I will have to return to
Roswell this week to have another procedure done where they will remove more
cells – large enough to make sure they get all the abnormal cells. Luckily it was caught early enough where they
are not concerned with it spreading to the lymph nodes but I will be monitored
more closely in the future.
I have crazy mixed emotions over everything that has been
going on. Yes, it is a lot while working
full time and remodeling a house- which is getting close to being done. (Thanks
to all our amazing family for helping!) But I am extremely thankful everything
has been caught early and hopefully controlled early before spreading to become
a larger problem. I have learned to
never ask what else could go wrong- as I really don’t want to know the answer.
So with the saying “when it rains it pours” I guess I will
just have to get a really cool inflatable raft, with a glass of wine (full of
cancer fighting antioxidants) and go floating!
*Love & hugs to you* You're amazing. I know I'm far away, but please let me know if I can ever do anything for you. I mean it, anything!
ReplyDeletewow. There's not much I can say, Jen, except a very small wow. You are doing a very good job of staying positive and that's important. It is good that it's caught early and Roswell certainly is a great place. They have taken very good care of you and still are. Consider all three of you hugged from us. You'll be in my prayers.
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