Signed, sealed and delivered 2 times. UCLA finally chimes in…

Half of my cancer battle is fighting the cancer.  The other half, it seems, is getting my scans down to UCLA for them to review and tell me their recommendations!

I recently had my 3 month follow up scan on October 6th.  We found out the results from the local hospital only a couple of days later, but as mentioned in prior posts, we always wait to share any news until we hear from UCLA.  They are our “final answer” people, so when we hear from them, then we’ll share with family, friends, etc.  My scan was delivered to UCLA on a Tuesday, exactly five days after I had it done here in Oregon.  Perfect.  They would be able to review it at tumor board on Wednesday.  I would have my scan, a local radiology report and UCLA’s opinion all within a week.  BAM!  I finally had this baby down to a science, as I should after 8 years!  The great thing was that, yes, it was delivered.  The not so great thing was that nobody had any clue *where* it was delivered.  I’m not quite sure what I was thinking allowing the shipping lady to choose my method of shipping, which was Priority Mail, but nev-uh again.  The second round went to FedEx and of course it arrived by 10:30 Tuesday morning.

Drumroll please…..my tumor continues to shrink!!!  I was able to quickly talk to Dr.Liau the other day as she was walking out the door for surgery.  She said the part that is getting smaller is shrinking away from critical areas, which is great news!  My tumor that is left is around areas of the brain stem, which controls most vital functions in the body.  Because it’s shrinking away, she said that if/when there is more growth, that another surgery is an option and she might be able to get more of that tumor out.  The idea of surgery #5 is just overwhelming at this point, but probably because the numerous complications of #4 are still just a bit too fresh for all of us.  She also said, though, that she’ll never be able to get all of my tumor out.  There is more tumor, not attached to this main tumor, that is into brain that she just can’t touch.

She was really surprised to find out that I haven’t been doing any treatment since radiation.  They made it so clear before and after surgery that radiation was only going to possibly slow or stunt the growth of this tumor, but not shrink it.  NOT SHRINK IT!  I’m pretty sure I asked her that question and threw her answer back at her at least ten times as my reasoning for not wanting to pull out the radiation card, yet, when they wanted me to do it back in 2008.  Why would I do it if it won’t get rid of it?  Radiation is one of the only etiologies that has been linked to these brain tumors.  At this point, she thinks it’s best to watch and wait, getting a scan every 6-8 weeks.  Dr. Cloughesy, my neuro-oncologist at UCLA wants me to be on a chemo called BCNU, not being comfortable with me having a high grade brain tumor hanging out in my noggin’ that can explode at any time not being on treatment.  I think I’m doped up enough on seizure drugs and will save the chemo for ‘as needed’.

So, what have I been doing?  I have an entire army of people bathing me in prayer on a daily basis!  Really.  This is so clearly God’s hand controlling everything.  It’s medically not in their realm.  They never see cases like this, they say!  I have been hearing this out of their mouths for years, now.

How can this not be God’s hand?

I think so, too.

So blessed.

 

 

More Fingerprints

One thing that is so nice about having cancer during this day and age is the internet.  You can find easily find information, valuable resources and network with other people that relate with what you are going through.  I love (and hate) reading people’s blogs that are dealing with my same diagnosis.  It can be so inspiring, but at the same time so devastating, especially when the ending doesn’t turn out how anybody would have wanted it to.  That’s why it’s especially frustrating when there are people like me who have a blog and don’t keep it updated!  I’m alive 8 years later post diagnosis!  My story is so inspiring, because doctors say I have beaten the odds!  What is wrong with me?  People that don’t know me and how I’m doing probably come back to my blog for an update and see that I haven’t written on it for almost six months.  If it was I looking for the update, I would want to hunt that person down to see if he/she was still alive.  How did radiation go?  What did UCLA say?  Do you know I’m waiting on pins and needles to see how you’re doing, because it gives me hope? (all things I’ve thought while following others’ journeys).

Point taken.

Well, UCLA had some amazing news for me about my July scan!  My surgery in February had split the one very large tumor into 3 very small tumors that all lie against different parts of the brainstem.  She got as close as she could to those different areas without touching the brainstem, which is very impressive, as well as very disturbing to all of my other doctors who look at my scans.  Anyways, one of the tumors had responded to the radiation therapy and is smaller in size!  This is totally God’s hand because they weren’t expecting for the tumors to ever shrink in size because of the radiation.  They were just hoping that the tumors would stop growing and remain stable.  Also, when brain tumors do respond to radiation, it is uncommon for it to show up on a scan until at least 3-6 months down the road.

The summer flew by, of course.  We were able to get away for a week camping with the boys in June in Hells Canyon.  It was really good for us to spend some time away from life, as a family.  The boys, especially Trent, were really feeling the impact of me going to the doctor and the hospital everyday for 6 weeks.  He’s so easygoing, so he just rolled with it, but I could see the emotional impact.  He’s young, but he could sense something was off when he had to go to grandma’s house everyday for so long.  One thing I’ve always been thankful for with this cancer journey is that it started when my kids were young enough to not know life any other way.  Mommy has always been sick and has always had to go to the doctor/hospital frequently.  Tyler was one when I was diagnosed.  Trent was one when my tumor recurred.

This past year has by far been the most straining and stressful for our entire family.  Being sick before the surgery and into the beginning of summer was a bit (too) much for everybody.  What’s that saying “Happy mom/wife, happy home”?  Indeed.  It was a really dark time, but God made His purpose known to me.  I didn’t like it, but He was gracious enough to show me why He was allowing me to go through it, which was comforting enough to keep me going.

We learned in July why I was feeling so ill through much of the Spring into Summer and were able to correct that (medication).  Once we figured that out, I felt like me, again!  I’m SO very thankful for that feeling!!  I haven’t felt like myself for about a year, now, since the domino of one piece of news after another last August into finally getting my meds adjusted recently.  I am on rather large doses of not one, not two, but FOUR seizure medications!!  Now you have to understand that almost all seizure medications have drowsiness and depression listed as the first 2 side effects, so finding the right combination of meds at the right doses (I was toxic on one) where I won’t have seizures, but I still feel like ME has been a major accomplishment.  This leads me to another amazing thing God has done in my life.  I haven’t had a grand mal seizure since I went into status epilepticus last October!  I have simple partial seizures every now and then, but I’ve never gone this long without having a grand mal in the past 8 years since diagnosis.  Except for those of you who have lost the privilege of driving, I can’t even tell you how nice it is to be able to go somewhere whenever I want to, to pick up or drop off my kids at school or to even just run to the store without having to call somebody and ask for a ride.  I have even gotten to the point where I can drive without fear, which is really amazing.  When I drive now, I don’t feel a rising panic when I see a flash of light, thinking that it’s my seizure aura starting and that I need to pull over right away and call somebody.

God has blessed me abundantly this summer, and I’m humbled again as I reflect upon His fingerprints over the past year.  I love doing that.  I love seeing where He was ahead of me when it felt like He wasn’t there.

I don’t know what you’re going through, but if it seems like God isn’t there right now, look back over the past however long you need to and look for His fingerprints.  See where He worked out situations that only He could have orchestrated, or ways that He protected, provided and proved Himself faithful.  I promise you’ll find them.

I feel like this post is just a Me, Me, Me, but there are so many great things that God has done for me, lately, and I wanted to fill you in on them.  It has taken me so long to update my blog that it’s already time for my 3 month scan!  It will probably be the end of this or the beginning of next week.  As always, thank you for your hugs, your faithful prayers, your cards, your continual love.  We are continually grateful for each and every one of you!