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.
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!
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
I’ve been thinking…
I love to write, but I don’t love to write everyday on a blog about random thoughts, daily happenings, etc. So this site seems to be severely neglected, but my research about these tumors and ways to treat them is quite the contrary. I am often looking for new news and information that I can arm myself with to fight this tumor.
Yesterday a news article came out about how brain tumor patients can starve their tumor. I love these news stories. Knowledge like this is power for any cancer patient. It’s empowering emotionally, physically and psychologically to know that there is more a cancer patient can do to fight their cancer than just what the oncologist puts out on the table. If you read the article, you will see that caloric restriction has been shown to be effective in inducing apoptosis in brain cancer cells. Previous articles have been released about how the ketogenic diet is effective in killing brain tumors, as well, because it elevates ketones in the body. Caloric restriction kills brain tumor cells because it elevates ketones in the same way.
Something as simple as a lifestyle change can ultimately be the thing that helps save your life. It’s not all about chemo and radiation. When you have a brain tumor, the brain is just the window that displays an abnormality that has occurred because of an imbalance happening in the whole body, not just the brain. Otherwise, the body wouldn’t have allowed the cancer to develop in the first place. Something like a dietary change can correct the imbalance in the body and reposition the immune system to be able to fight and kill these cancer cells. If you do chemo and radiation, which certainly can have their place in your treatment, then your immune system and body will be thrown out of balance. If you take an article like this and apply it at the same time you are doing chemo and radiation, you are not only going to help off-set potential treatment side effects, but you will also weaken the brain cancer cells by not giving them the fuel that they need to survive.
Perfectly logical.
Enormously empowering.
Checkup scan
My scan still continues to be stable! After the last one in February, UCLA said that I could wait 2 months instead of 3 to get another scan. I’ve been doing treatment only once a week, so it’s great to know I can stay stable and not have to live my life around treatment. Dr. Nigh still has me doing DMSO and a high dose of vitamin C. Other than that, just a few supplements and a lot of green tea! I’ve also been doing his elimination diet, which I recommend everybody doing at least once to find out if you have any unknown food allergies. It’s amazing the random symptoms that go away, such as sinusitis, when doing this diet and finding out which foods don’t agree with your body. You can buy the ebook here and it explains how to do it. Well worth the $20, especially if you’re experiencing any symptoms of any kind in your body.
Stable!
The results of my MRI showed the tumor to be stable since my last scan, which was almost 3 months ago. How blessed am I? This time spent off of treatment was great not only for a break, but so much better for my relationship with God. I loved it. I loved that when the fear crept into my head about being off of treatment and the implications it would have for the outcome of this scan, I remembered that I handed it all over to Him, and then I could breathe a sigh of relief. It was up to him. He wanted me to do this, so I had to trust him to take care of it. And he did!
I challenge any of you going through an extremely difficult situation to put yourself (responsibly) in a position where you have to rely upon Him and his help and guidance. The bondage of the crisis melts away and you often become more free than before the crisis began. God is so faithful. Why do we so often doubt?
I posted a testimonial for my naturopath on his new website. Part of that testimonial said this: In my world of cancer, he has by far become my most important ally. I have six doctors that I deal with regularly. Five of these doctors mean really well when it comes to treating my cancer. Dr. Nigh is the only one who has taught me that my body must first become well, in order to treat this cancer successfully.
I look at my cancer journey in a similar way spiritually. I feel like God is teaching me that my relationship with him must become well, too, as part of this healing process. Not that God can’t and wouldn’t heal me anyways, but for me, these past few weeks of having to lean completely on him was a breakthrough in my relationship with him. My whole hope and trust was put in him, and the rewards of that have been amazing. I don’t live everyday in fear of the unknown. It’s in his hands and I feel like I’m doing my part in putting my body on the path to wellness and I think that he will bless that. I truly believe that our body was meant to be self healing and that if we treat it correctly and give it the proper nutrition, that it will remain well.
My naturopath and I decided yesterday that the plan will be to do one day of treatment every week. One day on, six days off. Love it. It’s a great treatment plan. These tumors like to explode and upgrade overnight, so the treatment that I’m doing should keep that in check, but not overwhelm and alter my daily living.
God is good. The people he has surrounded me with are incredible. It is an absolute treasure and gift to be taken care of as well as I am.
If you’re dealing with something that is overwhelming, give it to him. He wants to take it and let you rest in his palm. Do it and you will be blessed.
I can tell you a little bit about that…