It’s
taken some time, but I am ready to blog again about my health, what is going on
in our lives and how the Lord is ever working through the valley’s. This is a
long one!
Update on My
Health & Dr. Appts:
The
beginning of June took me to Gainesville to meet with a specialist regarding my
Therapy-Related Myelodysplastic Syndrome. I thought that, and I’m not sure why,
this appointment would be a sit down with the specialist to go over my
treatment options and to discuss in depth and develop a chemo protocol that I
would take back to my doctor here locally. Instead, we talked in depth for
about an hour regarding the options to have either a bone marrow or stem cell
transplant. I got a lot of really great information regarding those two
options, but we didn’t delve into the subject of treating with this low-dose
chemo, Vidaza, and only discussed it briefly.
I
have been in remission for one year with the osteosarcoma and because of my original
diagnosis and the 25% cure rate that the doctors believed I would have, the MDS
specialist does not recommend that I pursue a transplant of any kind as of
right now. The main reason is that my combined cure rate for the osteosarcoma
& MDS is about 10%. A transplant is such a serious and extensive treatment
plan that he feels as if it would do me more harm than good right now.
Thankfully,
my MDS was caught early and the doctors, both the specialist and my local oncologist,
believe that the Vidaza, a low-dose chemo that helps bone marrow regenerate
itself, is the best avenue to pursue at this time. I was already convinced that
was the route that I wanted to take first, so I am glad that the doctors and I
are of one accord.
It’s
hard talking to the doctors about cancer and cure rates and life expectancy.
The doctors believed in March of 2010 that I wouldn’t live more than five years
and that most-likely my cancer would come back quickly even once it was resected.
I’ve been “cancer-free” for over a year now. It is debatable as to whether or
not the MDS can be considered a form of cancer, some medical professionals do and
some don’t. Initially, in talking with the doctors, I just felt like all they
had to say was doom and gloom. In talking with the specialist I realized that
this was a little more serious than I originally thought. This will turn into Acute-Myleoid Leukemia,
so they say, eventually without the Lord’s intervention in giving me yet
another miracle. My mother died of AML at the age of 42.
My Thoughts on
All This Health Stuff:
Leaving
the doctor in Gainesville that day, I had the overwhelming feeling that I
should just take off and travel, I really didn’t want to go home and face chemo
and being sick and all that another diagnosis entailed-again. Yes, this is
scary for me, not because I don’t trust the Lord, not because I am insecure
regarding my eternal future, but because I have a son to raise; a son that has
only ever known one parent. I want desperately to not only raise this child,
but to be there for him in adult hood. I can’t tell you how deeply I miss
sharing things with my mother now. How often I wonder what our relationship
would be like, how frequently I wish I could just call her, visit or chat on
the phone. However, I would be happy at this point to just have these next six
years to raise my boy; to spend cherishing moments with him. I beg for more
time, but in the end I know that God’s plan far exceeds mine and I do pray His
will be done. I think the most difficult; the scariest part of parenting is
imagining life without your child or leaving your child behind. It is a reality
that is ever present in my mind this going on to my eternal home and the young
man staying behind. I don’t know how to rectify that. I don’t know how to
completely release this Goliath fear of mine and hop on onto the mountain of
reckless abandonment in trusting the Lord. I’m just hopping through this
journey day-by-day praying for enough light to show me the way.
I
am going to digress here; I have really struggled with some big things over the
last year. I’ve wrestled with spiritual issues, quietly carried a broken heart
and spirit and asked the Lord again and again why He allowed me to live when
there are others I know personally that went home to be with Him. I know that I
don’t deserve to be here, but grace is getting what we don’t deserve. Still, I
feel like I am living on borrowed time. I so often fail. MAJORLY. I disappoint
myself and Him daily. I’m not a great Christian or even a good person.
Honestly, I dislike myself most days. About a week, maybe two, before I was
diagnosed with MDS a dear friend recommended the book 1000 Gifts by Ann Voskamp to me. It was impressed upon me to immediately
purchase this book. As a matter-of-fact, she sent me a text and the minute I
read it I picked up my Kindle to search for the book and see how much it was.
It was only $3.99 at the time, so I purchased it right away and began reading
it that day. This book is all about gratitude and living with the purpose of
seeking to be thankful in all circumstances. I was awashed anew with Christ’s
love for me as I read through the pages of this book. It then occurred to me,
actually it was more like a huge neon sign constantly flashing in my mind, that
I had forgotten to be grateful. How could I? After all He has done? After all
He has brought me THROUGH? I was reminded of when I was first diagnosed and I
made a list of my many blessings. I always meditated on this passage of
scripture
“ Finally, brethren, whatsoever things are true,
whatsoever things are honest, whatsoever things are just, whatsoever things are
pure, whatsoever things are lovely, whatsoever things are of good report; if
there be any virtue, and if there be any praise, think on these things.”
Philippians 4:8 and then purposed to constantly seek those things in
which I should think on. Sin took me away from my focus. I am so thankful for
my dear friend that recommended this book, 1000Gifts, which God used to bring my life back into focus. I can’t tell you
what a difference the challenge of ever counting gifts has made in me mentally,
spiritually and emotionally. It is like the difference between life and death.
In
the past few months since I have read the book I’ve felt release, renewal and
revival. I’ve been constantly reminded that the doctors don’t know everything
and the Lord is still in control and on His throne working to complete the work
that He began in me.
Treatments:
My
first round of chemo was June 24-July 1st. I’m praising the Lord
that this time all the chemo is outpatient. The transfusions last about 1 ½-2
hours and I go every day for 7 days. I started feeling it by the sixth day and
felt extremely fatigued and like I had major brain fuzz (I don’t really know
how to describe this feeling; dizzy, fuzzy, weird, not myself, out of my mind,
disconnected from my body?) from about June 30th-July 11th.
About 12 days straight. All in all it wasn’t too bad in comparison with what
chemo was like last time. Still though, it is a huge adjustment that requires
me to slow down. I was perhaps a bit too hopeful that I would carry on as
normal in going through this and therefore have pushed myself too much to have
a “normal” lifestyle. I start the next round on the 23rd of July. I
am praying and hoping that this next week will be a really good week for me,
but honestly the past few days haven’t. The brain fuzz has cleared up a bit,
but now some other issues are surfacing.
Detailed Prayer
Request:
I
hate to complain when things could be so much worse, but I do really need to
ask for prayer for myself and my son. I am having a really hard time adjusting
to "chemo life" again. I'm finding it's very hard to do day-to-day
things like cooking without getting really confused and making a disaster of
everything. Yesterday I exploded chocolate all over the kitchen, which was
actually kind of funny, but today I spilled about 1/2 gallon of milk everywhere
in the kitchen then slipped and fell really hard in it on my way to ask for my
son’s help to clean it up. Right now I am in so much pain. Every morning when I
wake up it is a surprise as to how I feel, so it's also hard to plan things.
Most of my friends probably think I am being incredibly flaky. I'm also having
insomnia pretty badly. It seems like every other night this past week I've not
been able to sleep until after 4 or 5 am. We are trying to get ourselves into a
structured routine to prepare for homeschooling in which we will start on
August 6th and now I am just really worried concerned about how I am going to manage
everything. I know that *I* can't manage, but it will be Christ’s strength
getting me through. I also know that I need to slow down even more, but like I
said, I just hate living a "sickly" lifestyle.
In
all of this, I know that I am so blessed though. My son is such a sweet, sweet
boy. He is blessing me in a way that blows my mind. He helps so much and is so
kind and loving to me when I get upset because I've done something silly like
spill the milk. Whoever said you shouldn't cry over that apparently never
spilled really expensive raw, organic milk and cream that they were going to
use to make their sweet child ice cream with. Or breast milk, not that I've
spilled any of that recently... Anyway, last time I went through chemo I
couldn't even care for myself. This time I can, and for that I am SO grateful,
but I am learning that I just can't do quite as much as I had been doing; this
would seem like a no-brainer, I know, but keep I mind that I have slowed down
considerably since about February because of the fatigue that I’ve been dealing
with. I am so grateful for so many things, even for this trial because the Lord
has already blessed me in ways I can't describe or wouldn't have been blessed
if I hadn't gotten "sick" again. I am just asking for prayer to do
what is necessary and to know when to rest, to learn how to care for myself
during chemo and how to mother my son in a way that teaches him about life
during this storm and trusting the Lord, to allow the Lord to work in my heart
and life and trust Him with my days- even when I spill the milk, burn dinner,
fall many times or land myself in the hospital-again.
What Else is
Going on You Say?
Now
that I’ve got all that off of my chest I hope to blog more frequently. I seem
to be having so many thoughts lately and need the therapy that writing offers.
Funny thing is that I actually just sat down on Facebook to type out a prayer
request to a prayer group that I am a member of and it became so long that I
brought it over to a Word document and just kept typing. Word says I’m on page
5. Figure I’ll turn it into a blog post at this point! If you’ve read this far
thank you! Leave me a comment so that I can thank you and pray for you
individually!
Some
of you may know that I became a Pampered Chef consultant in October of 2011. I
love TPC and I’ve enjoyed my business so thoroughly. Unfortunately, I had to
begin taking a step back in April due to my health. I haven’t been doing any
shows aside from a catalog show here or there. That is probably for the best
considering my confusion cooking in my own kitchen and the disasters I keep
having. I miss it though and I am praying that once I get another round or two
of chemo under my belt and know more about what to expect in the way I respond
to the treatments that I will be able to at the very least schedule two in-home
shows a month.
In
January the Lord began working on my heart regarding my son’s education. He has
attended a Christian private school since 1st grade and he just
finished up with 6th grade. I have two good friends whose eldest
sons graduated high school this year. That coupled with my health challenges
and the Lord’s persistence has lead to me making the decision to homeschool. It
is a terrifyingly awesome journey that we are going to embark upon. I knew from
the beginning that the idea was completely of the Lord and the more I plan,
research and discuss it with my son the more I am convinced that this is
completely of the Lord. This may very well be the best decision aside from
salvation that I have ever made for our family. I am so very excited to have my
DS home with me every day and to have the great privilege of home educating
him. The same good friend that recommended 1000
Gifts to me (she’s really awesome & smart!) turned me onto Charlotte
Mason. After doing some research I determined that her methods are exactly what
I envisioned for our homeschool adventure. Reading Charlotte Mason’s writings
have been so incredibly convicting and eye opening for me. I’m enthralled with
her philosophies and challenged in a way I have never been. I honestly think
any parent could benefit from reading her 6 Volume work, not that I’ve read all
6 yet-but I am telling you they are some of the best child rearing books I’ve
ever read! We’ve got all our books and curriculum planned and purchased and we
will begin school on August 6th. If we didn’t have so much going on
the next two weeks I would start tomorrow. DS is excited, or as excited as a
12yo boy who has had a traditional education thus far can be to start school ;)
I just can’t wait to see how he grows this year. I can’t wait to see the love
of learning spark in him and to share such an amazing experience with him. I’m
pretty excited about learning right along with him!
DS
started sailing camp at the local marina last week. It is daily from 1-4 and
goes through next week. He is loving it! The boy loves to sail and is well on
his way to becoming a “salty sailor!” Once sailing camp is over we will have
VBS at church. I am praying that I can help out again this year. I will have
chemo that same week, so I would appreciate your prayers there as well. After
that it will be August! Where does the time go? It’s amazing how we blink and ½
a year is gone.
The formatting went all wonky when I pasted this into blogger. Oops, don't know what went wrong there! Sorry for the super long post!
Stay tuned for counting days of gratitude... won't you count with me?
<3 Jill
The formatting went all wonky when I pasted this into blogger. Oops, don't know what went wrong there! Sorry for the super long post!
Stay tuned for counting days of gratitude... won't you count with me?
<3 Jill
