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Deja vu

February 23, 2011 By 12 Comments

The word that sums up these past several days perfectly.  This is the third time that we have traveled this road.  This will be the fourth surgery, but only the third here at UCLA. We arrived here late Monday night.  I had pre-op appointments on Tuseday which cleared me to have surgery tomorrow.  This includes bloodwork, chest x-rays, EKG, blahblahblah.  I’m healthy.  Well, from the neck down, anyways.

Our experiences here, really, are so rich whenever we come.  I am blessed with the most amazing soul in my neurosurgeon and she brings so much warmth and comfort whenever we meet with her.  Yesterday I had the crazy longest MRI of my entire life.  The tech was getting ready to take me back and Marvin was going to wait.  He told Marvin that it should only take me about an hour and a half to finish.  What??!!  An hour and a half??  I can’t move for that long?  I can’t scratch anything that is inevitably going to start itching because I know I can’t scratch it for an hour and a half?

The test was significantly longer than usual because it produced several images that were crucial for mapping out how the tumor would be able to be accessed when she does the surgery tomorrow.  We went over that with her today when we met with her.  One of the pictures gave us a clear view of how the tumor has intertwined with structures of my brain.  The first thing, and extremely crucial and a HUGE answer to prayer is that the tumor has remained stable in the four weeks since the last scan I had done when I was down here.  Some of you may be thinking four weeks?  That is hardly a significant period of time to allow anything to grow.  Not so in the world of brain tumors.  When these tumors become a grade 4, they are capable of doubling in size overnight.  I am not exaggerating.  Overnight.  The fact that it has remained stable definitely favors a less aggressive tumor than a grade 4, in which we are so incredibly thankful!  We won’t know for sure what the grade is until she takes the tumor out tomorrow and we get some pathology, but at this point, we’ll remain optimistic that it is a lower grade.

The bummer part of this tumor is where it lies and what it is wrapped around.  Because it has been a low grade tumor for so long and because these tumors don’t grow as round balls like most cancers do, they grow tentacles and this one has had time to wrap it’s tentacles around brain structures and nerve fibers.  Unfortunately it has wrapped itself around my optic nerve fibers.  I have already had some peripheral visual loss in the left eye in the upper quadrant.  With the removal of the tumor that has wrapped itself around those nerves, I will almost certainly lose the rest of my peripheral vision in my lower quadrant.  This means that I will have no peripheral vision at all in my left eye.  It is definitely a noticeable deficit, as it is, already, but it’s not anything that I can’t get used to.  My body will eventually learn to compensate for it by learning to turn my head more, etc. to see what I would normally see without having to do that.  She does recommend not driving for several months, which pretty much sucks.  No other way to put that.  I’m used to getting my driving privileges removed, but not for several months at a time.

The other bummer is the amount of tumor that can’t be removed.  The original part of the tumor that was left behind from the surgery 3 years ago because it was too close to the brainstem will still remain, as well as some tumor that is too close to the motor strip.  They will have some needles connected all along the left side of my body to monitor twitching movement while she is operating around this area.  If she gets too close to a motor area, the left side (because the tumor is one the right) will start to twitch, so she will know that she’s too close and needs to leave that tissue alone.

I have to say, though, with the what-if’s that we were facing coming into this appointment today, that I’m so thankful and feel like God has really answered so many of our prayers!  I’m so excited for surgery tomorrow.  I have so much peace about it.  God has proven faithful continuously, of course, and I eagerly wait to see how He’s going to continue to use my circumstances for His glory.  It’s hard, yes.  I struggle to hold it together, especially lately, yes.  But in the end, God reminds me that He’s still in control and I can’t help but be thankful for this journey and the things I am learning and the blessings that I have received because of it.  We are so grateful to so many of you that  are praying us through this.  You have know idea what you mean to us.  I wish I could hug each of you personally and tell you how much you mean to me, how much I appreciate you.  I pray that God blesses you for it!

It is late.  I have some stuff going on tomorrow, so I’m signing off, but just wanted to update you all.  Thank you so much for loving us.  We love you.  I’ll be back so soon to tell you how great I’m doing and what the next step is.  Until then…

Filed Under: Appointments, Brain Surgery, Linda Liau Tagged With: ,

UCLA (dis)appointment

January 22, 2011 By 31 Comments

We went to UCLA this past week to get some follow up scans done on their MRI and PET scanner and then had a follow up appointment with Dr. Liau.  We did this down there because their PET scanner is more sensitive to low grade glioma cells, which is what we assumed my tumor was because it has presented and acted that way for so many years.  We wanted to see if that was truly the case and the PET scanner at the local hospital here wouldn’t show that.

Well, the news we were dealt was shocking, to say the least.  I really felt like we would be walking away from UCLA with the recommendation to do further surgery to debulk what had subtly grown over the past few years to hopefully decrease my visual symptoms and seizures and then to continue on the Temodar to either keep the tumor stable or try to get some regression if there wasn’t any, already.  When Dr. Liau walked into the room to greet us, she put down a piece of paper that was clearly a copy of my PET scan.  My eyes were immediately drawn to the glaringly large areas of bright red on my brain scan.  Hot spots.  I knew that wasn’t good.  Not only had my tumor continued to grow since the prior scan, which was only two months ago, but the tumor has now become more aggressive, which is logical considering the amount of tumor growth since last August.  So is it a grade 3 or a grade 4?  We’re not sure.  The only way to know for sure is to operate and get some pathology on the tumor.

The tumor board had just reviewed my scans prior to my appointment with her.  There were several recommendations.  One was to go straight to radiation to slow down the increasing growth and aggressiveness of the tumor.  Another was to do an IV chemo, which has much more severe side effects, similar to what one imagines when they think of chemo (i.e. hair loss, vomiting, etc).  The one that we have decided to do is surgery so she can take out as much as she can and then follow that up with radiation.  If you read my past post, I talked about putting off the radiation card because my tumor wouldn’t be that responsive to radiation because the cells weren’t abnormal enough and we weren’t at the point.  We’re there now.  How quickly things can change.  Surgery is scheduled for February 17th.  Almost exactly 3 years to the day as my prior surgery.  This will be surgery number four.  I can’t believe it!  We figured out from these scans that what we thought were two separate tumors is really one large tumor extending into different portions of my brain.  It’s the original inoperable tumor that has made it’s own path into a deeper part of my brain and created another cluster of cells.  I asked her what she thinks she can get out.  She said she thinks she can get out most of the hot spots, which is so important.  There are some that she can’t touch, though.  If these hot spots are grade 4 cells, it would be devastating.  That renames this tumor to a Glioblastoma Multiforme.  It is a horrible diagnosis and I don’t even want to entertain the thought of that by going into detail about implications of it here.  After about a month of healing from surgery, I will begin radiation either in Salem or up in Portland.  It’s 5 days every week for six weeks.  Ugh.  If there is still tumor after all of this, then IV chemo will probably be next.  The fact that my tumor is inoperable and a high grade puts me into a completely different treatment regimen, now.  We can’t just wait around and see what the tumor is going to do.  We have to keep treating the tumor until it’s gone on the scan.

These tumors are notorious to recur within weeks.  It’s going to be a tough battle.  I knew this day would most certainly come when the tumor upgrades.  I guess I just thought after being stable and low grade for seven years, that it wouldn’t all change so quickly.

We really need prayer for peace and comfort right now.  Our kids will be away from us for awhile while we’re down at UCLA for surgery.  Tyler is older and will understand a little more and be able to see by looking at my head how serious my sickness is.  We don’t talk about it much with him.  We know God’s grace is sufficient.  It’s brought us this far.  But I won’t lie.  We’re scared.  It’s really scary to think of what might be.  We try to rest in God, but we’re human and our emotions are strong.  Thank you for loving on us and continuing to pray for us.  We appreciate it more than you’ll ever know.

Filed Under: Appointments, Brain Surgery, Health updates, Linda Liau, Scans

The month of June….where did it go?

June 30, 2009 By 2 Comments

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…

Filed Under: Appointments, Scans

A much needed breath of fresh air

April 19, 2009 By 3 Comments

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…

Filed Under: Appointments, Scans Tagged With: ,