Merry update!

The holidays have come and gone and we’re pushing into January!  I’m so glad!  It’s been a great past couple of months, but it’s been an emotional time.  I’ve been doing a lot of reflecting on where we were a year ago at this time and with that has come so many mixed emotions; swinging from gratefulness to sadness, from fear to joy, pretty much all over the place!  We’re coming up to the date of when we flew down to UCLA and found out that I would be having surgery #4.  Because the main health “events” occurred back in the Fall, already, at this time last year, the holidays last year were really overshadowed by everything going on with my health and preparing for surgery, that I really feel like the kids missed out on a lot of things because of it.  It’s not like I didn’t do a lot of things with them, but my heart, mind and soul were all elsewhere so much of the time.  They were aching in constant fear of the unknown that was about to transpire a short amount of time later.  It consumed me.  I allowed the Enemy to win, and it makes me sick when I think back at my behavior last year at this time.  Just. sick.

This year, I wanted to make sure that I was one fully present parent!  I was going to be present in everything;  class parties, class mom, field trips, Christmas shopping while driving ALONE.  I wanted to sit on the couch with one kid on each side of me and watch Christmas movies and eat way too many Christmas cookies, everything my crappy attitude took away last year!  I asked the boys what they wanted to do, and we did maybe about ten percent of what they came up with (the other 90 was pretty much ridiculous).  They really just wanted to work with daddy a lot of the time at the dairy on the break, so they spent a good deal of time doing that, which was great for me!  Kid free shopping (aka DFS). Usually by the night of Christmas, I am ready to take down all of the Christmas decorations and put everything away because I can’t wait for everything to be back in it’s rightful place.  This year, though, we kept it up for a few days longer.  We watched Christmas movies for a few more days, and daddy came home with Christmas presents a couple more times.  It was such a sweet time with my boys.  I cherished every moment of their break.  I drank it all in because last year, I allowed my horrid attitude to make me take it all for granted, and I am one of the last people I know that should be taking even one tiny thing for granted when it comes to time with these precious boys God has blessed me with.

I did sneak in a MRI at the beginning of December, as we’re now doing those every 8 weeks, rather than every 3 months.  UCLA said that the scan was stable compared to the prior.  Praise the Lord!  The local radiologist wasn’t so optimistic about one area in the resection cavity not possibly becoming new tumor.  I mention this, not as new news, but as a prayer request before this next scan, that this spot will clear up and go away!  it has been there on the past three scans and keeps getting a little bigger and brighter in contrast.  It could be scar tissue or it could be tumor.  We don’t know until we just wait and watch what it does.  The rest of the areas of tumor all remained stable, though, so I am so blessed for that!

I will have another scan in the beginning of February.  I am currently weaning off of some seizure medications, which is absolutely fantastic!  I’m down from four to just Keppra and Topamax.  My neurologist is wanting me to add in another, which is sitting on my counter.  We’re having a stare down.  Weight gain is a main side effect, so I’m not too thrilled about that, but I must say it’s better than a grand mal seizure!  I haven’t had one of those since October of 2010, which is just absolutely amazing, considering I was having at least one every couple of months.  I have to say, the best part of my life, maybe even better than feeling well, is being able to drive!!!  It’s something that most of us take for granted, just to be able to jump into our car and run out and go somewhere.  A lot of people can’t do that!  I wasn’t able to do that for SO many months at a time, multiple times.  I am now the cheesy mom who is driving up the driveway into the school parking lot with sparkling teeth waving at her children because she’s so excited to be there picking them up.

Yep, that’s me!  I cannot be more proud and more humbled at the same time!

God is so good.

 

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!

 

Another roller coaster ride

I was watching a movie with Tyler the other night.  I was on the laptop and only half paying attention to what the movie was really about, but I glanced over and noticed that he was crying.  I asked him what was wrong and it took about one second for him to burst into sobs.  The movie was harmless.  It was about some animals ,but the animals belonged to a family that didn’t have a mom.

“Mom, why would they make a movie where there wasn’t a mom in it?  It’s not right.  Why would they even think to do that?”  He then proceeded to tell me how worried he is about me and it didn’t take long before I grabbed him and was holding him tightly in my lap trying to be the strong parent and not show that I am constantly fearful of that scenario for our family, as well.  The kids.  Cancer is so much harder because of the kids.  The thought of my kids not having both parents around growing up is so hard to swallow.  Everybody keeps telling me to just trust, that God knows what He’s doing, that His grace will bring us through.  As a Christian, I know all of these things.  I really do, and I believe them.  But when we keep getting hammered with bad news, it’s really hard to remain peaceful about the situation.  It feels like there hasn’t been any time to just relax and come up for air for so long now.

I’ve been having some complications since beginning radiation toward the beginning of April.  They are just minor, mostly pain.  Because the symptoms didn’t start out as pain, but had actually progressed to that, my radiation oncologist decided it would be a good idea to do a MRI scan to see if there was something going on with the tumors that might be the source of the symptoms.  The scan showed that one of the tumors is growing new fingers that have gone deeper behind the occipital lobe.  The scan also showed several areas of enhancement that may or may not be new areas of tumor formation.  My brain has also filled up with fluid and inflammation, once again, as it did before this last surgery.  It’s surprising that I’m not having more symptoms from that, but I’m on four seizure medications, so that is probably a good thing and may be what is keeping any seizure activity at bay.

At this point, they are remapping the radiation field to target the new area of tumor growth more heavily.  It was already receiving some radiation, but not enough.  The bummer of all of this is that more brain will have to get irradiated in addition to the extremely large amount that already is receiving it.  Please pray, pray, PRAY that the new areas of enhancement are not tumor.  These tumors have wheels and once they start producing satellite tumors like that, they are extremely hard to slow down and turn into freight trains.  I’ll be totally honest.  I’m scared.  I’m really scared.  I need peace.  My family needs so much healing and peace right now.  These past several months have really taken a toll on everybody.  We need rest.

Once radiation is over, which now won’t be until June because of all of the delays, they will possibly have to install a shunt in my brain to drain out all of this accumulated fluid.  My scan is being sent to UCLA and they will review it at tumor board, which meets on Wednesdays.  I think the only new piece of information that may come from them is the possibility of starting chemo now, rather than waiting to see if radiation can control these tumors.  Like I said, it’s better to stay ahead of these tumors than to try and play catch up.

It is so obvious to me the lesson that God is teaching me over these past several months.  Control.  It’s not about mine.  I have none.  All of the control I thought I had when it came to treatment and being able to keep this tumor in check with it through my research, etc., doesn’t matter at this point.  The tumors are growing.  Nothing is stopping them.  At this point, it seems that only He can.  I think He wants it that way.  Full submission.  It’s what it’s all about, right?  I’m so stubborn, but He has backed me into a corner.  He’s getting me to a place where it’s becoming an easy choice to lay it down because that’s all I can do.

I am so incredibly thankful for all of you who have been so faithful in praying for us.  It is really the only thing that is getting us through this time.  I could never have even dreamed what the next six months would hold after that big seizure I had last fall.  We feel so often like there is no way we could be stretched more than we are at the moment and yet God continues to give us the strength and then, yes, stretches us some more.  He is faithful, no doubt.  But I believe that He is answering the prayers of so many like you.  We have been so blessed by meals, cards, gifts, so much from so many friends and people we don’t even know!  I know so many of these people I speak of are reading this blog, so thank you!  Thank you from the very depth of my heart!  I wish I could hug each and every one of you!

Test results and the plan..

We got home yesterday from our trip to UCLA.  I can’t even begin to explain to you how thrilled I am to be done with that place for awhile.  I’m so ready for life to just settle down and for us to find some sort of normal, whatever that may look like.  I don’t like that when Trent greets me in the morning, the first thing he asks me is what doctor am I going to that day.  My kids are such troopers through all of this.  I’m so thankful that I was diagnosed when Tyler was only one.  This is all he’s ever known and it’s obviously all Trent has ever known, as well.  It has never been as intense as it’s been over the past 6 months, and that has definitely taken an obvious emotional toll on our family, but we’re hoping that things will finally quiet down and we can just focus on being a family and enjoying our time together, rather than upcoming surgeries and trips to doctors, etc.

This past month, since I’ve been home from surgery has been extremely rough for me.  What I thought would only be a couple of weeks of just taking it easy and healing from surgery turned into a month of not feeling well at all and not knowing why for most of it.  After going to a few doctors, Dr. Liau suggested that I go see an ENT to check out my sinuses.  We figured out that I picked up a sinus infection, probably before surgery already, and didn’t know it.  The surgery added fuel to the fire and I now have a very large infection that we’re having a hard time clearing up.  In hindsight, there were definitely early symptoms, but when you’re recovering from brain surgery in the same area as the infection, it’s hard to know what is causing the symptoms.  Unfortunately, I waited too long to get it treated and now have a mess going on in my head.  I had a CT of my sinuses done and if the infection doesn’t clear out in a couple of weeks, then I will have to have surgery to clear out the infection because I’m high risk.  The infection is sitting right next to my surgery site.  We think the infection may be what is causing all of this numbness that is still on the right side of my face.  The ENT thinks the infection is pushing on the maxillary nerve, so it’s probably not a permanent thing.  Love that!  So needless to say, that has been beyond frustrating to not be feeling well at all for so long, and it’s not because of the surgery!  I’m feeling great with all things surgery related!!  I’m on a heavy antibiotic and praying that it clears this thing up because I’m good on the surgery thing for now, thanks.

I finally received pathology news this week from my surgeon.  The tumor has indeed upgraded to a high grade tumor.  It’s not a grade 4, but a grade 3.  The official diagnosis is an Anaplastic Oligoastrocytoma.  I can’t say that I’m too disappointed that it has upgraded.  I fully expected that it had, given the rapid amount of growth in such a short period of time.  The growth was so extreme that it seemed almost impossible that the tumor wouldn’t be a grade 4.  A grade 4 is a Glioblastoma Multiforme, one of the most devastating diagnosis in the world of cancer.  Very fast, very aggressive and very lethal.  I am so inredibly thankful that one of those is not hanging out in my noggin.  I am now only one grade below that, though, so the harder part of the battle has now begun.  There are two pieces of tumor left that are too close to eloquent parts of the brain for Dr. Liau to have been able to remove them safely.  One is close to the Thalamus, which is where she left it during the last surgery, and the other is next to the Basal Ganglia.

We were in California for only 24 hours on this trip.  We wanted to get in and get out, and so we did!  We first met with Dr. Selch.  He is the radiation oncologist at UCLA.  He explained what would need to get radiated and what the side effects might be.  Because the area where the tumor was/is, is quite large now, a very large portion of the right side of my brain will be irradiated.  That is a bummer.  The guaranteed side effect will be that I will lose my hair at the site where the beams go into my head.  Will the hair grow back?  There is a 50/50 chance that it will.  Yeesh.  The other most common side effect during treatment is fatigue, but not everybody experiences that.  I’m still working with Greg, my naturopath, doing naturopathic treatments immediately when I got home from surgery.  There are many ways to offset this fatigue naturally, diet being a big one, so we have a plan.  The long term side effects of radiating this part of the brain are short term memory loss, which I’m already accused of  (: It can also have an effect on emotions.  I’m not sure in which way, but I guess we’ll find out!  They are irradiating the hippocampus, the limbic system, so many crucial structures to my everyday functioning, so there will most likely be deficits that may be a little frustrating down the road.  It’s one of the big bummers of brain cancer.  You’re messing with a part of the body that controls every aspect of your entire body.  Everything they do in there is affecting something else in another area of my body.  These deficits from radiation usually don’t rear their ugly head until several months or maybe even years down the road.  Thankfully the brain is extremely neuroplastic and there are many software programs that have been developed to help with regaining short term memory, etc.  Where there’s a will, there’s a way.  This girl has will.

They did some genetic testing on my tumor, as well.  Based on certain genetic mutations, they can predict how well a tumor will respond to radiation or chemotherapy.  It’s not an exact science because based on the testing from my surgery three years ago, my tumor should have responded well to chemo, but didn’t.  The test on my tumor showed that I have the IDH1 mutation.  This genetic mutation has shown to be associated with a better prognosis and has been shown to have a better response to radiation.  We pray that is true.

We also met with Dr. Cloughesy, a neuro-oncologist.  He is amazing.  He is so warm and personable, much like Dr. Liau.  I feel like I’m in extremely good hands with him overseeing my local treatment.  Based upon the pathology of my tumor, he has decided that chemo is not a good option for me right now.  He doesn’t think that my tumor will respond to it, so we’ll save that as an option for down the road.  We already tried Temodar, which is just a pill and a mild chemo, but is the first choice for brain cancer, no matter the grade.  It did not work for me, so the next chemo that would be coming my way, if necessary, will be the IV heavier stuff.  I’m so thankful that time is not right now.  I’m ready for a break from heavy stuff! (:

So that is hopefully the end of many months of chaos.  I’ll probably start radiation the first week of April.  It will go for 6 1/2 weeks everyday.  We are so incredibly thankful for all of the prayers and support from all of you during this time.  We have felt it all throughout each day.  I can easily say that these past six months have been the most trying months of my life.  It has just been one thing after another for such a long period of time.  There have been so many blessings through it, but geez.  Enough, already!

Thank you, thank you for your prayers, your cards, your phone calls, for all the different ways that you have loved on us and supported us through this time.  We feel so blessed to be loved by so many!

No rest for the weary!

I received an email from Dr. Liau and there was not any additional pathology available this week from my surgery, so they will bring my case up next Wednesday at tumor board to see if there is more information.  This is what I do know, though.  At this point, we will be flying back down to UCLA in a couple of weeks to meet with a couple of new doctors.  Up until this point, my only doctor at UCLA has been Dr. Liau, who is my surgeon.  I have not done radiation, yet, for said reasons, but they are wanting that to be the next step no matter the final pathology.  Because radiation is everyday for six weeks, I will obviously be doing that here locally in Salem.  I will fly down to meet with Dr. Michael Selch, who is a radiation oncologist that specializes in brain tumors.  He will then be able to coordinate and oversee my local treatment here in Salem.  When radiating the body, there are multiple variables that are involved in calculating how much of the tissue to radiate, how many rads to throw at it, etc.  I want to make sure we’re all on the same page here before I do this!

I will also meet with Dr. Timothy Cloughesy.  He is a neuro-oncologist, and an amazing one from what I have heard and read over the years.  He will work with my local oncologist.  I found out that the genetic testing on my tumor that I had mentioned in my previous blog is only being done to decide now on the chemotherapy that will be used later, when/if it is needed.  There are several different chemothefrapies out there, now.  It’s not fool proof by any stretch, but they are finding ways to test cancer cells ahead of time and anticipate which drug they will most likely respond or not respond to.  This limits the pain and misery of the common cancer shotgun approach, which is great!

So at this point, it’s looking like radiation won’t get going until the beginning of April, which is fine with me!  They originally wanted to start in a couple of weeks.  The thought of them radiating this noggin right now just makes it hurt all the more!

Another one down…

I know I wasn’t very diligent about keeping anybody updated while I was down south.  It was killing me, but the biggest reason was that my pain factor is quite a bit more significant with this surgery than it has been with any of the past surgeries.  I was able to jabber a little bit with Facebook, but much more than that felt like more effort than I was capable of.  These surgeries have been getting so easy to bounce back from that I’m trying really hard to not get really frustrated by this limitation.

 

But, wow, what a whiner!  GOD WAS SO FAITHFUL THIS WEEK!  So incredibly faithful.  I ask myself this all the time:  why do I ever doubt?  My worries and fears coming into this surgery that have all been expressed in previous blogs were all covered.  They were ALL covered!  Dr. Liau wasn’t able to remove all of the tumor, but we knew she wouldn’t going into this, so I can’t say this was ever a fear.  My vision!!  There was rather significant swelling in my brain when she did surgery, so there is probably a similar amount of swelling now, which is always common after any surgeries.  This swelling and the tumor was pressing on my optic nerves creating several visual symptoms that have been going on for a couple of years now.  Two of those symptoms have already resolved!  At this point, the vision that she said would most certainly be damaged does not appear to be any different.  It’s not something that might not show up down the road when there is healing and scar tissue buildup, but right now I’m really trying to just hold on and claim God’s protection of that vision during surgery, that He spared it.  It may seem silly, because in the grand scheme of things, I am dealing with brain cancer, but the idea of losing so much vision in one eye was bothering more than anything coming into another surgery.  It has some significant long term implications if it limits that vision.  I consider this a miracle!

The other amazing answer to prayer is that this tumor appears to be mostly low grade at this point.  With the sudden shock we received recently that the tumor we thought had only subtly grown over the last three years had really tripled in size and now showed hot spots, it only seemed inevitable that news would come that it was aggressive.  We’re still waiting for final pathology, which should come this week, but the fact that she had so many tissue samples tested during surgery that were consistent with low grade is very encouraging.

I can never just pass over lightly God’s protection through these surgeries.  It’s brain surgery.  It was a very long surgery and I am home and feeling pretty well, already.  I was doing pre-op appointments only a short week ago, although it seems much longer than that!

Now that I’m home, I’m enjoying reflecting on this past week and seeing God’s hand in the events of the week.  Oh, how I wish that everybody could go through experiences in life where it puts them in a place that allows them to reflect and relish in God’s goodness.  Not that I want you to go through brain surgery, but it’s a beautiful thing to be in a position where you are constantly looking at how God is working out details in your life.  I may only be in my 34th year of life, but I feel like He has allowed me to live  so much more life than that, already, and I have to say I’m so thankful for it.  I’m thankful for the depth of maturity that I’ve been able/forced to acquire because of it.

Our usual routine on our way down to UCLA is to visit Marvin’s family in northern California.  It’s a great way to see everybody and the by far our biggest blessing has always been the opportunity to spend a little bit of time with his Grandpa and Grandma Visser, who are Marvin’s mom’s parents.  I was originally scheduled to have surgery on February 17th.  We all came down with the flu, so the surgery was postponed a week.  If the surgery would have stayed on schedule, we would have been able to see Grandpa one last time.  By the time we had traveled down that way, he had what we thought was a really bad infection and decided not to stop in for fear of me getting sick.  Only a few days later, Grandpa passed away.  It was sad that we weren’t able to see him one last time, but since we were down in California, Marvin was able to go to the funeral, which was such a blessing for him and for his family!  So not only was he able to honor his grandpa by being there for his funeral, but he was also able to see his entire extended family because his crazy huge family had all flown in for it.  I had just gotten out of surgery 40 hours earlier, so I opted to stay behind and rest (:  The timing couldn’t have been better.  Not that I wanted to postpone the surgery one second longer than it had to be, but I have to say that I am thrilled that it was because of this.  Marvin’s uncle is a pastor and performed the service.  He spoke about God’s fingerprints in grandpa’s life, and that is exactly how I would describe this.  He had it all worked out.  There was a reason we got sick.  I’m content with this being it!

Dr. Liau is supposed to get back to me in the next day or two with the pathology of the whole tumor and the recommendations of the tumor board for what I should do next.  At this point, they seem to be really pushing radiation.  They will be doing some genetic testing on my tumor, though.  They are able to tell whether my tumor will be more sensitive to chemo or radiation depending on the results of this testing.  I will post the updated information of what life will look like over the next few months when I get it.

Meanwhile, I just want to say thank you so incredibly much for your constant outpouring of support to us!  We have been overwhelmed with love and it is really carrying us through some trying times.  This surgery has just felt different in so many ways.  It has been a lot harder and so we are so thankful for all of you that have been constantly encouraging us with cards, notes, emails, phone calls….everything!  Thank you for loving on my family.  I’ve always said that it has to be so much easier being the patient than the family member.  My husband is incredible!  My kids are troopers!  Thank you for taking care of them, as well.

I’ll be back with deets soon.  Really, this time. (-;

It is well with my soul

I love that hymn.  Absolutely love it.  It floods by heart, mind and soul with peace when I hear it.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

and the best verse:

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

This week started out anything but being well with my soul.  It has been a very intense week for me.  I have been warring with some pretty strong emotions that roller coaster from one minute to the next.  I’ve been mad, sad, happy, distraught, joyful, peaceful, in despair.  I was just all over the place depending on the moment you inquired.  I was upset.  I was mad.  I was confused why God was allowing all of this to happen.  Why does he keep dragging this trial out, now going into the seventh year, now.  Why?  Why?  Why?  What are they going to find when they operate in just a few weeks?  What if His will is for this tumor to take my life?  What about my family?  I’m not ready for all of this!

Those that know me know that my mind is one of my greatest assets, but also one of my worst adversaries.  After over-analyzing everything to the point of physically getting sick, I decided to send a note to a dear friend of mine this week.  I poured my heart out in some pretty raw emotion to her and I frankly didn’t like a word of what she had to say back to me.   She said that  “God didn’t promise you healing.  He promised that He would stay with us throughout our sufferings”, among some other encouraging words that felt anything but encouraging at the time.  She referenced this scripture:

“Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you.  Instead, be very glad–because these trials will make you partners with Christ in his suffering, and  you will have the wonderful joy of sharing his glory when it is displayed to all the world” (I Peter 4:12-13)

I know that God didn’t promise to heal me.  I’ve been told (warned) of that over the years and it has always scared me to hear that.  I know He’s more than capable, but will He?  It turned me into the obsessive researcher that I am today, just in case I had to take the healing into my own hands (eh-hem). It really has always scared me and I didn’t like that she threw that back my way.  Not. one. bit.  But what she said was perfect.  Since this tumor started gaining some momentum in August, Marvin and I have talked about how I need to get to a place where I’m at peace with whichever path God chooses to take me down, healing or not.  Once I was able to lay my emotions aside and read her words with a softened and open heart, God did such a miraculous, really, work in my heart that broke down some long standing walls and has me in a place where I finally feel at peace with whatever God might ask of me.  I know that God is good.  God is sovereign and He has a plan.  I look back at my life over these past seven years and it is so evident.  You know when you are looking out a window that has so many fingerprints on it, that it’s impossible to look through the window because all you see are the fingerprints?  My life is that window.  You can’t look into me without seeing how His fingerprints have been all over me from the start of this journey seven years ago when I had a grand mal seizure.  One MRI changed my life forever.  But God didn’t.  He never changed, but He has changed me.  He has changed lives through me.  I am so humbled when I think of that.

I’ve had so many people tell me how mad they are and that it just isn’t fair.  I have said, felt and thought that a million times.  I’m very slowly starting to understand, though.  Cognitively, I understood before.  You grow up in the church, you read in the Bible that all things work together for His good.  There are so many scriptures that point to trials and why He allows them and how we are to deal with them.  Last night while driving home from choir, I was feeling peace with why it was fair.  He has not put me into existence so that I can live this carefree life on earth and then join Him in heaven when I’m 90 and ready to move on.  He has put me on this earth as His tool.  If I’m not being used for Him, then what good is my life?  What good am I to you if I’m not pointing you to Him?  Would trials like this seem fair to you if one of your loved ones didn’t know Christ, but came to know Christ through somebody else’ testimony like mine?  Would you be weighing the fairness of my trial, then?  I think not!  I think you would be rejoicing for the trials that God allows because look what came from it!  And then it might cause you to rejoice in your own trials when they come your way.  There is purpose in everything.  Who knows who will be joining you in eternity because of the short amount of suffering you might have to experience on this earth.  Your suffering might have saved them from a lifetime of suffering in hell.  We don’t know.  But He does.  And I’m finally at peace with that.

UCLA (dis)appointment

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.

So much to talk about!

I’ve learned about myself over these past few years that when the going gets tough, I tend to internalize.  I could have written about 10 blog entries over the past two months with all of the latest drama that I have mustered up, but I guess I haven’t really been to the point where I actually want to sit down and talk about it.  I don’t really like to now, but I know that a lot of friends and family come here to keep up to date, so here it is!

It started on an evening back in October.  I was sitting in the living room with the boys and my visual seizure aura popped into my vision.  I hate that thing!  I’m so incredibly thankful for these auras, though.  I know at the point that aura comes on, that I have about 30 seconds to find a safe place to lay down before everything in my vision is swirling so much that I have to close my eyes to keep the pain away of my eyes trying to focus on one thing.  So I run into my bedroom and laid down on my bed.  I know it’s a safe place for me when I finally go into the seizure and become unconscious.  Marvin runs to my side while I’m lying on the bed.  I’m actually able to get my breathing under control while my aura is still circling in my vision.  Usually my heart is racing and I am panicking by now.  I was praying that the aura would subside and that the seizure would never progress.  Not at all to be.  Not only did I have one seizure, but my seizure progressed into status epilepticus.  What?  Status epilepticus??  I’ve read about that!  Do you know that people often die from being in that state?  Those thoughts all ran through my head in about .9 seconds.  What that meant for me was that my original seizure kept rolling into another seizure, which turned into three seizures.  I never regained consciousness for more than a few seconds between each one and not at all between one of them.  Scary.  What was even more disturbing was that at the end of my seizure, I lost all functioning on the left side of my body, from my head down to my toes.  I woke up and heard Marvin keep telling me to wiggle my left toes.  I was wiggling my toes and was getting so irritated with him because he kept making the request, but what I thought were my left toes I was wiggling, were merely just the right.  He called the paramedics and I went to the hospital to make sure that all of my blood work and vitals were good, which they were, so then I could go home and sleep.  If I would have been more alert, I would have pushed for a scan to make sure that the tumor was behaving.  Any ordinary breakthrough seizure can signal tumor growth, let alone a seizure that turns into epilepticus.  It was really late at night and the ER doctor thought it would be too much of a hassle to try and get a read, so he just sent us home.

The next day, I started having some lingering numbing sensations throughout the left side of my body, which absolutely frightened me, so I went back to the ER.  This time, though, I wasn’t leaving until somebody stuck me in a MRI machine to see what was going on in my noggin’.  Thankfully the people at the hospital are so absolutely wonderful to me and they were able to squeeze me into a slot to get a scan right away.  It didn’t take too long for the ER doc to come over and tell us what I had already suspected:  tumor growth.  He sat down with the radiologist and the radiologist had just told him that there was small growth of the tumor.  I had 20 other questions about this new “growth” that the ER doctor didn’t know the answer to, so I called the radiologist the next day.  He was great and went over my scan with me.  He said that yes, there is an increase in the signal abnormality (that is how tumors show up on MRIs), indicating growth.  Ok.  But, there was a bigger issue he was concerned about.  Ugh.  I have some ventricles in the right side of my brain that had slightly enlarged.  Was it trapping of cerebral spinal fluid, or could it be an “extension of disease”?  He wasn’t sure, so scans were sent to UCLA for their review.

It was an eternity until I was finally able to speak with Dr. Liau on the phone about what the consensus of the tumor board was about my scan.  She had already mentioned to me in a prior email that they said there was growth, so my gut had been twisting for a few days, already, in anticipation for what they were going to say.

Finally, around 10 am on a Thursday morning, I got the call.  It is the sweetest voice on the other end.  She stammers a little bit and asks how I’m feeling.  She is so incredibly compassionate.  Neurosurgeons don’t make personal phone calls, especially when you’re a nationally renowned neurosurgeon.  She wanted me to know that, yes, there was some growth in the tumor.  I couldn’t bare the anticipation any longer, so I asked her before she could say it.  Is there another tumor?  Yes, she says.  I asked how big and she said that she thought around the same size as the other, which is a little less than one inch.  The new tumor is in the Insula.  It is too deep to operate, much like the original tumor, so removing it isn’t an option.  My gut is sick and now on the floor for the remainder of the conversation.  But she is just so sweet.  I’m talking to this woman, and she is handing me the most horrible news anybody has probably ever handed me, and I just want to reach through the phone and hug her!

So what’s the recommendation?  The tumor board, which I guess I should explain what that is.  The tumor board is a group of radiologists, doctors, oncologists, neurologists and professors that work at UCLA and gather together every Wednesday morning to review patient scans.  They reviewed my scan and the consensus was surgery and radiation.  Confused, I told her that I thought the tumors were inoperable, holding out the very, very slightest (I knew) of hope that maybe something changed and it was all of a sudden operable.  She told me the original tumor has had very subtle growth since my last surgery in February of 2008, so they recommended her taking out that tiny growth.  Bummer.  I was shooting for her taking the whole thing out.  They would go after this small of a tumor for two reasons.  One is to get some pathology to see what the exact grade of the tumor is.  The other would be to alleviate some of these symptoms that I have.  The biggest bummer about tumors in the brain is that it doesn’t take much of anything to disrupt something else in a big way.  The tiniest amount of growth that I’ve had has affected my vision enormously.  This tiny growth has caused my seizures to have gotten to the point where I’m now on  3 seizure medications to try and control them!

What did we decide?  She knows that I’m not willing to use the radiation card, yet.  I will do radiation at the point when the tumor is high grade and will more likely respond to the damaging effects of the radiation.  With low grade tumors, which we’re assuming mine are, the cells are not extremely abnormal, as they are in higher grades.  The more abnormal the cell, the more fragile the cell and susceptible to whatever is being thrown it’s way to kill it.  We’re not there, yet.

We decided that surgery is too aggressive right now.  The risks outweigh the benefits and we wouldn’t treat any differently than what we’re already going to do, anyways.  We’ll put that off.

So Temodar, it is.  I started my first round of chemo, after being off for a couple of years, a couple of weeks ago.  I got quite sick from it this time around.  Everybody swears that I was this sick last time I was doing it, too, but I don’t remember it being anything like this.  I guess that’s the part of your brain that blocks out the bad, remembers the good.  I have a much better game plan in place for when I start this next round to hopefully stay ahead and ward off any of the side effects from it.  The next round begins the day after Christmas.

I was quite thankful that Dr. Liau and I were on the same page about which treatment to pursue right now.  Any of you who know me or who have read my blog know that I am definitely one to make my own decisions.  I am in constant contact with several doctors that manage different aspects of my disease.  I love having that many people because I can get several different opinions and then pick out what I agree with and what I don’t.  Ultimately, it’s my body and these are my decisions.  I have been so blessed with Dr. Liau because she has been supportive in all of my decisions, namely the one to go off of chemo and stay only on homeopathic IV treatment.  She is a gem.

And speaking of the homeopathic stuff, my naturopath and I have started that up again in full force.  If you’ve been following this blog, that has been my main treatment since I visited a natural cancer clinic in Oklahoma a couple of years ago.  Since we were having such success with it, we decided to cut back on the aggressiveness of the treatment this past summer to see if we could back off, but still keep the tumor in check.  A big part of this decision was because of the expense.  It’s not a cheap decision to go the homeopathic road, but I believe in it with all of my heart!  The other reason was the time/emotional commitment of being hooked up to an IV pole everyday, although I am fortunate enough to be able to do that at home while watching football.

So after taking much of the summer off of doing any treatment, which was a much needed/loved break, we’re hitting it as heavy as we can right now.  I know enough about these tumors to allow my mind to be satan’s playground right now.  I’m really struggling with trust.  I know what these tumors can do, how quickly they can kill.  What if that’s God’s will?  I’m having such a hard time letting that go and laying it down at His feet.  I know, I know, I KNOW that His grace is so sufficient.  It has been so evident in our life when this journey started almost 7 years ago.  He has a plan.  He has a purpose.  I need to be ok with whatever that might look like.

Many of you are asking what the next step is.  Marvin and I will fly down to UCLA in January so that I can get an MRI and a DOPA PET scan done on their machines.  The DOPA PET, as opposed to the more common FDG PET, is more sensitive to low grade tumor cells.  It can better distinguish low grade tumor cells from swelling, scar tissue, or anything else that may just be something benign.  It’s an easier way to know exactly what we’re dealing with, without having to go under the knife at this point.  If those scans show some significant growth, then surgery will most likely ensue ASAP to get out whatever she can.  A decision will have to be made at that point of whether to do radiation or not.  Dr. Liau said that if there is just some minor growth on this next scan, that we will likely just continue on the Temodar to see if we can get some response from the tumors.

So that is the plan at this point.  Temodar, homeopathic IVs and a TON of prayer.  There is no treatment more hopeful than prayer!  Thank you so much for your outpouring of love upon me and my family.  I am continually in awe and humbled by the cards, the calls, the meals, the hugs, absolutely everything that you guys shower upon us all of the time.  It’s only by God’s grace and with friends and family wrapping their arms around us like you do, that is getting us through this extremely difficult time.  Just to let you know, we are not sharing a whole lot with our kids about this.  Trent is too young.  Tyler knows I have a tumor.  He knows it causes the seizures that he unfortunately has had to witness on more than one occasion.  We haven’t told Tyler about the second tumor.  We figure, why?  If there comes a time when we need to sit down and talk about it more, then we will do that.  We are wholeheartedly believing, though, that it will never come to that time.  We are believing in God’s faithfulness and His healing hand in my life!

Thank you, again, for all you do.  We cling to your prayers and covet them every single minute of every single day.

With so much love….

Charysse

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