it's been a while since i've written a complete update, so here's the latest.
seems nothing has changed.
yet everything has changed.
my mind and emotions are all over the map. thank God He is steadfast
a few weeks ago matt went to city of hope for another opinion. though we can't get treatment there, we were curious what they thought. they agreed it's rare and it's aggressive. they also confirmed everything that riverside medical is doing. they had their tumor board review matt's case and agreed we are on the right track. they also said the tumor is up against the orbital bone but it isn't eroding it. that was a huge surprise and answer to prayer. we've since found out from them that there is no "standard of care" for this cancer. i'm still not sure how to even respond to that. ok, so what do we do now?
then, per our request for a referral out, we went to uci. jamie, our cancer liaison and friend went with us. she asked a lot of questions. later we discuss everything, prayed, and decided to stay the course. we will stick with getting treatment at riverside medical. we didn't like a lot of what that oncologist at uci said and her opinion and thoughts on treatment conflicted what we had previously heard. the uci oncologist has seen 6 or 7 patients; coh has seen about 10 and rmc has seen 3. so we figured no on really has much experience but if coh and rmc have seen twice the number, we'll stick with where we are. plus we really like our oncologist at riverside medical. having said that, our surgeon is from uci and has coming highly recommended from both rmc and coh and we understand he has experience doing surgery with this cancer in this location. we don't know how many cases he has seen. (i say i'm experienced in running half marathons, i've run 3.) lets hope when he says he has experience, he isn't using the word like i do. but then again, this is rare right? sigh...
last friday, matt had two mris and monday we got the call that the tumor was half of its original size, it was the size of a lime. now he has half a lime? ok, maybe more like a walnut? anyway, that was amazing news, we rejoiced, we cried, we thanked God.
and that changes things again.
with that news, the radiation oncologist, who, have i mentioned looks like kramer? he's tall, thin and has wild hair...i told matt i expect him to slide into the room and say, jerry!!! but back to the point...he is changing the radiation method. he's happy with the shrinkage but the tumor is still near the optic nerve so he wants to use a different type of radiation so he doesn't damage the nerve. he is also being more specific with how he hits the tumor. he said the more radiation, the more risk of damage. he told matt that there are about 14 more scheduled treatments but i suppose that will depend on surgery? (more on that below) the radiation mask is a bit more loose and they asked if matt is losing weight...he said it's just that his hair is gone now but if they want him to go grab his toupee, he's happy to do that. they laughed.
the chemo cocktail is also changing because matt is having increasingly more ringing in his hears and they are concerned it could become permanent if he continues with the same chemo treatment. he has an appointment on monday to check his hearing. perhaps they can also check the selective hearing that comes with being married almost 20 years? wait, did i just say that?
the oncologist also said that there's a chance that when we see the surgeon at uci on the 18th, he could schedule surgery sooner rather than later and chemo (scheduled for the 21st) could be cancelled. they want to do surgery soon so they can stop the radiation. matt will still have more chemo after surgery, we don't know how much or which method (oral or iv) but we're told he'll have a few rounds. we think that surgery will be through the nose rather than cutting but that will also be confirmed the 18th.
matt still has thrush, he's on meds and has lost a few pounds. they are concerned with the weight loss and want him to bulk up. he can't afford to lose much weight. he's already lost 6 lbs in a week but he had chemo and with the painful sores, it's understandable, just not ideal. because of the thrush, he craves watermelon. and watermelon is pretty much out of season. when he sees one (and usually there's only one!) at the store, he runs to it and grabs it. so if you are eyeing it and matt is around, act fast or you are out of luck. you've been warned.
so how are we doing? the kids are both doing ok. just ok. they are struggling at school. it's an adjustment, new programs, new schools, and new things going on at home. their minds are easily distracted. they are both talking more to us about the cancer and what they see God doing in it. they pray daily for daddy to be healed. they pray for opportunities to share Jesus because of the cancer. and they pray that no matter what He decides to do in this, heal daddy here on earth or in heaven, He would be glorified. tonight taylor prayed over dinner and said, "Lord, we'll praise You in the storm." (another reason for my tears.)
and how am i?
i'm tired. i'm weary. i'm emotionally drained. we live a busy life with work, church and lots of activities going on, it's natural to feel this way. people continue to bless us. i've cooked dinner once; my house has been cleaned; the lawn is kept up; friends run errands for us and get the kids where they need to be. the doctor appointments; phone calls, homework with the kids, etc. wear me out. it's emotional. i've made it one day with out crying and it's been 44 days. i don't cry all day every day; it's just that something each day gets me. usually an unexpected blessing, but sometimes it's just a lot. the highs are high and the lows are low. i didn't expect matt's bald head to be hard for me but it is. harder than i thought. it's a visible reminder that cancer is in our home. when i see him, i see cancer. the Lord is showing me areas where i am weak and i need to rely on Him in all things.
my role right now is to help the kids and matt get through this. as much as i tell matt that we can make this somehow about me, it's not. (gasp!) the Lord called me to be his helpmate and i want to be the best helpmate i can and honor Him in it.
because it's good for all of us, i reluctantly do things for me. and i work. and i go to women's bible study each week. i'll be ok. He is our strength. we draw from Him daily.
this is a long, hard road - it's not a road i'd detour from if i had the choice because what He is doing is far better than we could have expected or anticipated. (i used to think only crazy people said that!)
we don't have an end in sight. it could be six months; it could be a year; could be more; could be less; we have no idea. but then we aren't promised tomorrow are we? so we try to live intentionally, we make the most of each day. we hug tighter, we say i love you more often, and we laugh harder and more frequently.
we still add to our hope pile daily, His word brings life. it gives strength when we have none left.
again, He is so good.
so that's the update, if you are still reading, you deserve an ice cream.
No comments:
Post a Comment