I thought I should post a blog since it’s been a very long time.  It’s been challenging to have time and actually want to sit down at the computer lately.  I love summer!  I was supposed to have scans this morning, but they had to get changed to next Tuesday due to a scheduling conflict.  This is closer to 8 weeks from the last, anyways.  Life has been quite busy lately.  Between my endless medical appointments and summertime with the kids, there is always something going on.  It’s so nice to have Tyler home to play with Trent in the mornings.  They are becoming quite close now, so it’s fun to watch them grow together.  Whenever they’ve been apart and see each other again, they always give each other a big hug and pat each other on the back.  SO cute.  Think that will last for the next 10 years?  Neither do I.

We were able to get about 1000 miles away from cows and doctors for 8 days in California a couple weeks ago.  We spent a little bit of time in northern California with Johnny and Melinda (Marvin’s sister) at their house and then headed down to San Diego with them for a week.  We hit up Sea World, the beach, stayed at an RV resort that was right on the bay and just hung out.  It was amazing.  The weather was perfect, the company was perfect, it couldn’t have been a better week.  It was a much needed break for our family.  Marvin has been going 24/7 with the dairy for the past year and if he’s not working, he’s dealing with some kind of medical something in my life.  I actually went a couple of days on this vacation without once thinking about this tumor.  I am not at all exaggerating when I say that it has been a couple of years since that has happened, probably before my tumor recurrence.  So that was amazing to be able to be so distracted by having fun that we didn’t think about all of the other ’stuff’ going on in our lives.

We’ve had some tough times in our house lately.  Because Tyler is getting older and aware of a lot more now than he was when he was younger, he’s now asking why I have to go to the hospital and doctors so often.  He starts crying if I have any focal seizures come on and he’s with me because he’s scared.  He’s seen a couple of my grand mal seizures which doesn’t help that situation.  He tells me all the time that he’s worried about me.  It’s heartbreaking to watch him deal with all of this.  We are praying, pleading that these next scans show some good news.  We could sure use some!

Trent is finally putting forth more effort to talk.  It’s about time!  It’s really cute.  We’re hoping he learns to speak well soon, but just not as much as his brother does(-;

I’m still doing chemo which is going ok, as well as natural IV therapies.  We’re hoping to create some sort of synergy with the 2 different treatments to get a response from this tumor.  If the scan shows some growth, it will be a very hard decision of how to proceed.  Radiation is recommended by all doctors, but since we’ve been told that it won’t help me live longer anyways, and it could cause some pretty significant side effects including causing a high grade tumor of what I already have, then it seems illogical to go down this road.   So we’ll just take it a day at a time.  The story of our lives…

We still feel blessed, though.  We have so many loving and supportive people around us.  We know we are covered in prayer and serving a God that can heal.  We are claiming healing in my life, hopefully sooner rather than later.  We know God is good so we’re just resting in that.  I will post with results when we get them.  Scans are July 7th (how is it July already???), so hopefully by the end of next week we’ll get some news.  Until then…

I have been blessed, again, with a great doctor.  I decided to get a new oncologist, so my neurologist recommended one at her clinic in Corvallis.  She is amazing.  I told her everything that I have been doing and she was so supportive that she offered to put in an order for me to get a port.  She thought my PICC line must be a huge inconvenience for me, which is quite true, so why not get a port, instead?  A port is a catheter that is surgically placed under the skin, usually around the clavical area.  There is essentially no maintenance and it can get wet, which is lovely.  Trying to keep this PICC line dry in the shower has proven to be quite challenging.  Swimming is definitely not an option, which is a big bummer when going on vacation.  I’ve wanted to get one of these for awhile now, but didn’t have a doctor that would be willing to give the order to have it done.  It is such a relief to have a doctor that supports what I’m doing homeopathically, and it’s amazing that it happens to be the same one that is also monitoring my cancer treatment.

I have scheduled my follow up MRI and PET scan on May 5th.  Based upon the results of those scans, we’ll decide what the next step will be.  If the tumor is still growing, it is recommended by all of my doctors that radiation should be done.  This would be the absolute worst case scenario.  We’ve always wanted this to only be a last resort, rather than play that card so early.  It’s a one time deal and can’t be done, again, later.  But if it’s necessary to get it done, then we’ll do it.  I really don’t anticipate any growth on this scan.  My focal seizures have decreased quite significantly over the past month, which is such a huge relief.  I have done 3 rounds of chemo so far and will be doing a fourth right before my scans.  The first round of chemo was a learning curve.  I learned that the fatigue I experience is significantly reduced if I eat some protein first thing in the morning, followed by small meals throughout the day.  It seems like this drug plays with my blood sugar level, so keeping it balanced helps tremendously.  Part of this issue, I’m sure, is because I have to stop eating early the night before.  I have to take Zofran (anti-nausea med) on an empty stomach and an hour before I take the Temodar.  It really seems to wreak havoc on my GI system, too.  About an hour after I take the Temodar, I experience some fairly significant cramping.  ‘Smooth Move’ tea is a fabulous solution for this.  As soon as I start drinking it, the cramping subsides.  So if you’re on Temodar, buy a case of this stuff here.  It’s significantly cheaper than buying some in a store.   I am so extremely thankful for modern medicine when chemo is necessary.  It’s amazing that I can be on chemo and forget that I’m on it, thanks to things like anti-nausea drugs.

I’m hoping to get my scan results a little faster than I have been getting them.  It’s been taking about a week to get the results, versus a couple of days like what it used to be.  The waiting game is always a stressful time.  It’s hard enough dealing with the anticipation of having the scans done, let alone having to wait to get the results several days later.  I feel so incredibly blessed to be surrounded by caring hands right now.  My surgeon, my naturopath, the MRI tech, the nurses changing my PICC line dressing, my oncologist….all amazing people.  Experiencing cancer is so much easier when you enjoy the people who surround you throughout your journey.  I ame blessed in that way. 

Other than all of that stuff, I’m hoping to have some good news to post on May 6th…