I know it
has been awhile since Becky or I have updated everyone on how we are
doing. The truth is we have barely been
home to provide an update. I may have
over compensated for being stuck in a hospital room for the last 9 months! A few weekend trips, Portland, Oregon Coast,
Ephrata and the most fun was Hawaii! But
we actually did not sleep a weekend at home from March 27 until May 8th! I've really been enjoying my time out feeling almost normal.
Here are some Pictures:
We are on the Oregon Coast
The Boys go to the Seal Caves... It doesn't smell good!
4 Wheeling on the Beach in Oregon. (Thank you Uncle Frank and Aunt Linda)
First Day in Hawaii
I was able to paddle board... but it wasn't pretty
Family mini golf ocean side
The boys Loved the wild life
Jude made a goal to take a weird photo with Every statue in the resort
Grammy and Granpy took the boys to see the volcano. Jude loved to have the top down!
(very grateful they came to help with the kids!)
Went on a submarine. Becky got sick, but we saw a shark in a wrecked ship... Just like on Nemo!
The waves were too much for my leg... So this was the alternative!
Priceless
So here is
the good, the bad and the ugly of where we are today!
The good.
I feel
great! My energy is coming back more and
more each day. I was able to kick almost
all the medications right away that I was taking the last 9 months. My leg is getting stronger and seems to be
recovering much faster without having the chemo being pumped into me.
Becky gets
me to the gym almost daily, and I for some reason keep letting her drag me to
classes. Spin class a few times now and I
just did TRX class today… That’ll hurt
tomorrow! But we are enjoying our time
together and I know this is helping my leg get stronger, and hopefully
correcting my pulse and blood pressure.
I am playing
golf again and able to play 18 holes already!
It isn’t easy but dragging my leg through the finish always feels
good. My game is nowhere close to where
is used to be. I have been asked several
times if it’s frustrating to play so much worse or different than before. My answer is simple and honest, “I’m above
ground and playing golf, so no it’s not frustrating.” Neither of those was a guarantee 10 months
ago and isn’t a guarantee forever.
I am loving
being home with Becky and the boys.
Getting to take Jax to school, doing puzzles, Legos or taking Jax to the
golf course. Hanging out with Jude for
our morning coffee is amazing. I felt
like I missed out on a lot of this and am so happy to be able to make up for
lost time before going back to work.
The
bad.
My new right
leg is an inch shorted than it is supposed to be… Seems like there would be a more precise way
to go about these surgeries but I am told this is normal. The device did move 1 CM higher post-surgery
too. The difference in length makes it
hard to walk without a limp. Trying to
fix this with orthotics and heel lifts without having to rock giant shoes… The difference plus the week right leg is
also now playing havoc on my hips and lower back on the strong side. It is really painful to sit for more than an
hour or so, and sometimes just a few minutes can cause a lot of
discomfort. I’ve been attempting massage
and now chiropractic care to see if the pain will dissipate as things get
straightened out.
Continued neuropathy
in my hands and feet. They have a
tingling or numb feel almost all the time.
The pain and extreme temperature feelings has gotten much better. Regular acupuncture has helped (I think),
plus time away from chemo.
I am still
going to a lot of doctor and therapy appointments to try and help with all the
random side effects and recovery. Detox
from chemo can take months and some side effects can last years… But I would still much rather have some side
effects than have any more chemo days!
The ugly.
We know the
very real and scary risk of reoccurrence.
Depending on the person you ask or study you read the chance of return
is between 30-50%. And it’s really bad
if it does return. We know the only way
doctors know how to treat my cancer didn’t work. So we become those medical trial people that…
well you get the idea. This scary truth
is what we will live with for the rest of our lives especially the first 5
years. I have another scan coming up end
of June. Prayers that this is another
clear scan are appreciated. We know God
has a plan and we pray that the plan was for me to beat cancer the first try. If not we will continue to fight!
The other
part of this reoccurrence risk is that every time a muscle aches or a joint
hurts or anything else that is completely normal happens, you think the cancer
may be back. This is a ridiculous
feeling to have but is one I have… and
have a lot because my body is going through so much repair and adjustments that
my joints and muscles always hurt! We
are trying to learn how to live not in fear, but the truth is, we aren’t doing
great at it. Becky has been having
nightmares and wakes up in panic mode that I’m dead and I’m calling to ask
doctors to scan me again because I have a sore glut!
I’m starting
to get people asking me on a regular basis when I’m coming back to work. This is a hard question for me… Going back to
work right now would mean it is part time.
I’m seeing some form of a rehab doctor every day. Because I’m a commission employee, this would
be difficult to pull off, and probably not fair to Scott. (Although I know he doesn’t care and wants me
back ASAP) But my other reality is that
50%... These first few months of scans
are crucial and often reoccurrence happens in the first year. I’ve missed the last year with my family and now
that I feel like I have no idea what is in my future, I’m spending my time in
the most important place as long as I can.
In other
news:
Our
fundraising efforts (and by our, I mean Becky’s) are going great. I am busy goofing off and playing with the
boys but Becky has been amazing. We both
feel very passionately about the non-profit and the good work we will be able
to do from it. We have raised (Or have
commitments for) over $50,000 of our $100,000 goal for this year and still have
the event on Sept 12 to raise more money.
We are
already scheming about next year and finding needs that can be filled around
every corner. Honestly helping others
has been the best distraction for both Becky and myself. It feels good to feel like you can help
someone else experiencing the same hell we did.
September is
going to be here before you know it. We
are starting to try to figure out numbers etc.
So if you plan on playing in the golf tournament or coming to the dinner
and auction, Please go register and get that taken care of. We are very confident the dinner tickets are
going to sell out (we have a max occupancy) so you don’t want to wait on those! We are really excited how everything is
coming together and are excited for everyone to come.
Purchase a
Shirt - https://cancercant.itemorder.com/sale
