Quick Check In/ Updates Only:
Side effects all weekend. (nausea, headaches, dehydration, weird pains) Unsure why.
Moving all scans up to this week (MRI of brain & spine)
Have a genetic counselor consult Wednesday (cancelled two
other times so should go)
All recent reports are being faxed to MD Anderson. Getting a
referral from Dr. B to the Brain and Spine Center for some extra wisdom.
My Blog Update:
Today is Monday and it’s update day. To be honest, I’m not
feeling it. Since my last IT chemo I haven’t felt all that hot. It’s been
nearly impossible to not be scared or imagine EVERY thing I do, being the last.
Seriously, I made Kale chips and thought, well, since I never make these, it’s
probably the last time I’ll be making them. WHAT? Who says that? Someone in a
dark place I’ve realized. It was so easy to spiral downward, pretty quickly while
not feeling good and wondering if the deterioration is in progress; along with
planning my daughter’s 13th birthday, making vacation plans, my
littlest coming home from a sleepover early, in a bucket of tears because she MISSED me (can't get those wattering eyes out of my head - baby girl you have no idea), putting away
my Christmas decorations (gut wrenching), being offered a new sweet insane mountain bike (Riding isn't really in the cards right now much but missing it when I hear about everyone out riding) Ugh, it’s all so sickening.
So, what did we do? We had a Skip and Nadine meltdown this morning, shared some horribly emotional things we’ve been dealing with. We redefined ugly cry. Finally we cut loose, I went upstairs and my phone
had a sweet message from my God sister – our friendship history is amazing –
but this is the verse she shared:
“Jesus replied, 'you do not realize now what I am doing, but
later you will understand.'” John 3:17
I also received an email from another dear friend that today was
her day to pray and fast for us. It brings me to another place and I’m beyond
grateful for the ones who have given up so much for me and my family. It’s a
huge reminder of God and the ultimate sacrifice. He gave his son to die for ME?
So I can have eternity in heaven? So I could have HOPE in something greater
than here? It really doesn’t make sense and that verse summed it up for me. I
don’t need to figure it out or understand why, just honor the Lord and the others
I am around every gift of a day I’m given, however many more of those there
are.
I did go to the YMCA today, knowing it would help clear my
mind, and I actually did spin class. OK, I didn’t actually follow the class,
but I spun my little weak legs and even stood up some, and it felt amazing. I was
still half in tears from the morning, but it was good. Then what happens, I
walk out and two friends are waiting for the next class. One, every time I see
her or see her posts, my heart hurts and goes back to the ‘I don’t understand
place’ but then I always see her smiling and making it and being this amazing
positive, light of a person. So I know, whatever happens, it’ll be okay. Love you girl.
Finally, with all that said I did press on to make this
weekend fun, and it was! I got my niece Isla and all of us and some sweet
friends went to Build A Bear and I couldn’t stop smiling. Had a super time and
loved seeing all the girls be so cute picking out and dressing their bears. The
worst part was watching Madison and her friend go off into the mall –
adultless! AH! That was a first for us, but she was fine and had a super
awesome time. Sunday night we got together with more amazing friends and we
even hosted an appetizer dinner prior with all the families. I love having
people over, I love cooking and party planning, so besides my anxiety just a
few hours before of the amount of children that would be in my house, it went
exceptionally well, as did the kids! (Oh, I did burn the chicken tenders and
tater tots and set the fire alarm off. But they still ate them and we know our
alarm still works. HAHA)
We did miss church but watched it at home all together, even with the dog. It was great cuddle time and they announced new service times. So, weirdest thing, I woke up at 10, and was sad we couldn't make it to church thinking the times were 9:30 & 11 for whatever strange reason. I went to get ready for the day and was like OH 11:45! We can still GO!! So we literally ALL got ready for church, ate breakfast and realized we would be late anyway. Funny thing is, the new announcement times are those times I was thinking it was!!! Made me laugh. Guess I am still a part of the staff, without even being there!! HAHA! Love my NSC folks. Miss them all.
So, its after lunch time now, I just finished some prayer time and some reflection and I
think it’ll be a better day. Can’t seem to shake the blagh but must press on
and keep the hope. Harder some days, thankfully its some and not most
for me. Praying and shooting for positive, miracle results regardless of what I know has happened to others with LM. I get the disease I have
is terminal, it sucks, but it is. I guess if there is an eency, weency chance
that this drug will put everything into remission, lets see it happen. Trusting
God on this. Not really sure what else to do…
XO.
xoxoxoxoxoxoxo
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