I recently had a PET and MRI scan done on December 1st.  Both scans are showing the tumor to be stable.  Amazing news!  We decided after the last scan to take out the chemo (Temodar) and just do the natural IV treatment that I’ve been doing over the past 18 months.  We didn’t really feel like we were taking much of a risk because I only did 1 round of chemo in the 2 months before the scan that showed a reduction in tumor size.  Our rationale is that this chemo is known to make these tumors act more aggressively (you can read about this study here), so if we can keep my tumor under control with just natural means, and especially shrink it up some more, then that is definitely the path we want to take.

So the plan now is to keep alternating a week of DMSO, followed by a week of high dose vitamin C.  We won’t resume chemo unless something changes down the road.  My oncologist agreed that this was a good plan, and actually wouldn’t prescribe me more chemo when I met with her the other day.  She thought it was illogical to be on chemo if your tumor isn’t growing when you’re not on it.  What a breath of fresh air she is.

Even though I’m extremely blessed with a tumor that is not acting aggressively, I’ve been struggling with a bit of depression lately.  I’m so ready for life to just be ‘normal’, whatever that really means.  It’s hard not to get discouraged by having to carve time out of everyday to deal with this tumor.  It’s physically and emotionally draining having to do treatment on a daily basis.  My brain tumor is never far from our thoughts.  It’s extremely expensive to do what I’m doing, so the financial strain adds to all of the emotions, as well.  A lot of people in the ‘cancer world’ talk about living life from scan to scan.  It’s not a healthy outlook, but it is one that is hard to avoid.  After I have a scan, I’m already thinking about the next scan not too far down the road.  There are some people in my life that have told me “where’s your faith?”  A very unfair (and insensitive) question coming from somebody that is not being faced with a life threatening illness.  I am human.  I am young.  I have a family that I want to take care of for the next 50 years.  It’s hard not to focus on that.

But I do know that I serve a God that can heal.  He knows what I need, when I need it, how I need it.  Do I believe that he will heal me of this tumor?  Yes!  But until then, I’m going to struggle with my human-ness.  Not everyday is going to be an easy day.  God has been so good to me throughout this journey, so I know that he is there.  He is definitely there.  I am so thankful for all of your prayers and encouragement.  I would be lost without that.  I would be lost without God in all of this.

He loves me.  He’ll take care of me.  He’ll heal me.

And then we’ll stand in awe of all of it.

Seriously.  Are there any clever play on words that have yet to be thought of surrounding all of the hoopla of the swine flu virus?  I’m so tired of it headlining everything I watch and read.  You?  But even though I’m becoming immune to caring about anything that has to deal with the subject, I still think it is certainly something that we should be aware of.  And I’m not referring to being aware of the danger of actually acquiring the virus.  I think that topic has been mentioned a time or two over the past year.  I’m talking about the new vaccine that is becoming the subheading of every swine flu headline.  No doubt you will be, or are facing the decision of whether you or a loved one should jump in line at your local pharmacy, waiting with bated breath for the first shipment of vaccines to arrive.  I think that the bigger danger right now for all of us is acquiring the media induced flu virus.  It cannot be emphasized enough the importance of being an informed consumer when it comes to allowing a live virus to be  injected into your body with something that could cause you more harm than good.

I really, really, really encourage you to take a couple of minutes to check out this podcast.  It will provide you with great research based information that will help you make an informed decision.  Not only does it discuss the issue of swine flu, but it goes much deeper than that, giving you palpable tips on what you can do on your own to boost your immunity.  This information isn’t only swine flu specific, but has great implications for your overall health.  So if you’re interested in getting healthy, avoiding the flu, as well as numerous other ailments, then take a few minutes and check it out.

I am usually not one to feel sorry for myself. I am so thankful that I was raised to live in this mindset: It is what it is. You do what you have to do. On most days it is easy for me to rest in that. Why drown in your sorrows? It’s not going to make the situation better. In fact, it will likely make it worse. But every now and then, something will happen, and it will trigger the reality of my situation. I have a brain tumor. This thing could take my life, leaving my family without a wife, a mother, a daughter, a sister.

Yesterday was my day of being thrown back into reality. My college volleyball coach contacted me to let me know that our team is being inducted into our school’s hall of fame. After we finished our conversation, I was hit with this profound sadness. I started reminiscing a bit about those college days. The good ol’ days. The days before I had, or knew I had, this brain tumor growing inside of my head. I often refer to them as the pre-brain tumor days. Life was easy. Each day’s agenda included things like sleeping in, going to class if I felt like it, hanging out with friends, sports practice….fun stuff. The reality of our life right now really hit me. Life isn’t easy. We have a lot to deal with, more than most people our age. Doctor appointments, treatment, etc. is a part of our everyday life. It’s like we have this amazing life, yet there is this whole brain tumor thing that keeps invading it. But after wallowing in self pity for a bit, I was able to sit back and smile. I was able to smile because we are so blessed. God has given us two healthy little boys who constantly fill our lives with joy and laughter. We have a loving family that is always there to help us out when we need it, which has proven to be quite often. This tumor definitely keeps me humbled, especially when I am feeling weak physically. I deal with seizures as a result of this tumor, which is always a painful reminder of the formidable foe I am fighting. It’s also a constant reminder that I am not my own. I’m alive by God’s grace only. There are so many people who have it so much worse. A girl in our neighborhood, who was a few years younger than me, just recently passed away from the same type of tumor that I have. Five minutes ago, I received an email saying that a friend of ours just received news that his tumor has spread and there is nothing more they can do. I recently went to a brain tumor conference and it was filled with people that had bald heads from doing chemo, which exposed the all too familiar scar that outlined a prior craniotomy. A good majority of these people have a grade 4 tumor. Mine is a grade 2. The difference in prognosis is huge. These are the things that remind me how blessed I am. When I start to think about this, my thought pattern almost always follows down the same path. Why has God blessed me with a very manageable tumor? What is his purpose for my life through this? I don’t want to go through this journey without knowing that lives have been impacted. If lives weren’t touched through it, and it was just something that ‘happened to me’, then how depressing! Why can’t a broken leg just have been the thing that ‘happened to me’?
Because I’m looking for purpose through all of this, I am always on the prowl for somebody that needs my help, whether that is through encouragement, information, a hug, whatever. I love that. I love that my pride is constantly kept in check because I’m not on top of the world. I love that I am in a position where I have to look past myself and focus on others. My personality is to achieve, achieve, achieve. It’s so easy for me to grab every detail in my life and set it in order. I have plans A through Z, and then back-up plans for when A through Z don’t work out the way I had planned them to. While it can be a good characteristic, it’s often done at the expense of those around me. I am so focused on my plans, that things around me get pushed aside. “I’ll get to that after I accomplish this. Oh, they need me? Ok, just a second. I’ll be there in awhile, but I have some other things to take care of first.” If God makes time for every one of us and gives us the grace and hope that we need, then we have no excuse not to offer the same to those around us.
So yes, it was a hard day yesterday, but today was a good day. Today I was able to regain perspective. I don’t want to look at my past as the pre-brain tumor days. I want to just be thankful for the past, but look forward to my post-brain tumor days. The days that will happen after I am healed of this tumor. The days when I can look back and say “Yeah, that’s why God allowed that. That is so awesome. God is good.”

If you have a chance, please take time and watch this video:

http://www.know-the-cause.com/Shows/TullioSimonciniMDWithDougKaufmann/tabid/109/Default.aspx

Many of you know that I am addicted to research. I have been researching my brain tumor, stumbling across most other cancers along the way, since I was diagnosed 4 1/2 years ago. Everything that I have researched makes this video make perfect sense. I have been on Simoncini’s protocol (Sodium Bi-carbonate) since June. I obviously am not able to receive the therapy how he says it is most effective, administering it directly on the tumor, but I’ve been getting as close as I can through an IV.

Check it out.  It’s an interesting clip.  From my last scan, it looks like this guy could be onto something…

(My scans are both scheduled for November 11th, btw.)

We have calculated that I will be finished with the current treatment that I am doing on November 3rd. Can I tell you how excited I’ll be to not have to schedule my life around whether or not I’m going to smell like DMSO?? I’m going to a concert on Monday night with a couple of friends from Bend, so I have to stop my treatment on Friday in order to air out for a couple of days. Then, by Monday I’ll be odorless enough to be presentable in public. Nice, eh? Tyler had a carnival at his school last week and I was so relieved that when we walked into the gym, we were overwhelmed with the aroma of hot, sweaty kids. My aroma was then not so obvious.

So at this point, I think that I will have an MRI and a PET scan done at the end of that week, around November 6th or 7th (or whenever I can hitch a ride).

In other news, Tyler had his first field trip today to the pumpkin patch. He was so excited when he got back home. He got to go on a hay ride, go through a maze, go down a slide, eat a donut and apple cider. But the most exciting thing about the whole day was (drumroll…..) He got to ride on a bus. What? Really?? What I remember about buses was having to sit down on that cold, hard plastic seat that had writing and holes with foam sticking out of them, and the pugnant smell of exhaust fumes. And this mostly took place at a time of day when I was pretty sure I should still be sleeping. I guess we gain a distorted view of the finer things in life as we get older.

Trent is still not really speaking well, which has me a little bit concerned (I know he only turned 2 last week). He can say his vowels really well, but just sort of eliminates all consonants in-between those vowels. It’s really sad because he’ll come up to me “Ma, ma, ma, ma….gung, gung, gung, gung-gun”. He has the voice inflections, so I know that there is really purpose in what he’s trying to say, but I just can’t read inbetween the lines of gung-gung. I try to act like I know what he’s saying and quickly divert his attention elsewhere before he gets frustrated, which iw working well for the time being. Everybody tells me not to worry, as long as he understands what we’re saying to him and will respond to it, which he does very well. Tyler was already speaking fairly well at this age (per his baby book), so hopefully Trent grows out of this soon. Although I’m a bit conflicted. Tyler talks enough for everybody, so it’s kind of nice to not have verbal competition going on the house.

I’m so amazed at how hard my husband works everyday. And he does work every single day. He’s at work by 7, usually home by 7:30-8. He has Sunday afternoons off, but still works in the morning. There is so much going on right now, so his workload is especially heavy. It will be nice when things slow down a bit and he can whiddle his workdays down to 10 hours. Sheesh…He is such an amazing man, and we are so blessed to have him as a father/husband. He is a constant joy to my kids, which I love to watch, and a constant source of love and comfort for me. God has definitely stretched and matured us over the past several years, and I’m just so blessed by Marvin’s commitment to me. Wow, I can’t even write this down without getting emotional. I’m such a lucky girl.

Please pray for peace for our family right now. I’ve had 3 seizures in the past couple of months, which seem to take their toll on everyone in the family. It’s been really hard to not be discouraged by this plague of seizures that have come on. I usually only have a couple each year. Not only are they physically traumatic, but each one steals my license for 6 more months. It’s hard to not be really discouraged about not even being able to take Tyler to school, go grocery shopping, etc…. We’re praying that it is just irritation from everything that is going on in my head, and believing that it isn’t from tumor growth. It’s hard not to entertain thoughts of the latter, though. The plan at this point is to wrap up this treatment in the next couple of weeks and then get a scan at the end of this month.

Yeah, it’s been awhile. We’re topping the off the last day of summer Oregon style today….pouring down rain. So I thought it was a good time to update my blog. I’ve been trying to squeeze every last moment that I can out in the sun with the boys before our weather changes, thus the blog hiatus. Not much new to report. Life can never be completely boring around here, though. I did have a seizure in town a couple of weeks ago. It was scary. I was alone and in my car. Thankfully I was able to alert a man coming out of the store (I pulled into a parking lot to park the car. THANK GOD for auras). He was able to call Marvin, but then called 911 after watching me have the seizure. I thought it was kind of funny that he called 911 because of all the seizures that I’ve had over the last several years, I’ve never gone to a hospital after one. I guess if I saw somebody having a grand mal seizure, though, that I might have made that same decision.

Other than that, I’m still dripping away every night. We have yet to set a date, but around mid-October I will finish treatment and get a MRI/PET scan.

Tyler is still loving school. He bounces into our bedroom every morning around 6:30 informing us that it’s time to get up and get ready. I’m hoping that this zeal for school lasts for the next 12 years.

Trent is suprisingly having a rough time without Tyler around in the mornings. I was thinking that I would have a few quiet and productive hours of work in the morning, while Trent quietly keeps himself entertained. Yeah, not so much. Whenever I get on my laptop to work, Trent is climbing into my lap trying to sit on my laptop. I smile warmly at his grinning little face and think “How cute. I’m going to miss this someday.” Ok, maybe not. But I am trying to remind myself what every person with kids has told me. They’re only young once, so enjoy them while you can. I’m realizing that this time alone with him in the morning is a blessing. He will be off to school before I know it, I’m sure.

Marvin is doing well. I don’t think he could have much more going on in his life. Between his normal job he does everyday, building a new parlor, fixing equipment that keeps breaking down and starting tomorrow, chopping corn, he has time for little else. On top of that, he is my own personal chemist. He’s the one that mixes my IV bags every night and hooks me up, flushes my PICC line, etc. He’s amazing. Please say a prayer for the guys that these next couple of weeks will go smoothly on the dairy. They’ve had one breakdown after another this past week. They start chopping 500 acres of corn tomorrow, so there’s a lot going on. We really need the weather to cooperate, too. Corn is very late this year, so we’re flirting with the rain.

On a side note, if you are wanting information from me or have some specific questions that you would like me to answer, please leave a comment with your email address and I will contact you that way. I would like to personally respond to you, rather than respond on my blog to requests for information. Thanks…

We have decided to start another round of natural treatment, unless we hear otherwise about my MRI from UCLA. I always send a copy of my MRIs to UCLA, where I’ve had the last 2 brain surgeries done by the most amazing surgeon, for them to review. They actually first caught the tumor recurrence last year, whereas the local radiologist thought the tumor was stable. So it’s always somewhat edgy waiting for Dr. Liau’s email, telling me what the brain tumor board thought about my scan. We are praying that they either concur with the local reading, or that they have even better news.

Tonight I will be starting a round of High Dose Vitamin C with DMSO…yup, back to the odor. A little depressing, but all for a good cause. I will be doing this until next Thursday, when I see my doctor again. I happened to come across this article today, which was so exciting to me. My decision about doing the Vitamin C was being questioned by somebody in the medical field, so I thought I would do a bit of research to make sure that this was a good decision. Check out this article:

Vitamin C Injections Slow Tumor Growth in Mice

High-dose injections of vitamin C, also known as ascorbate or ascorbic acid, reduced tumor weight and growth rate by about 50 percent in mouse models of brain, ovarian, and pancreatic cancers, researchers from the National Institutes of Health (NIH) report in the August 5, 2008, issue of the Proceedings of the National Academy of Sciences. The researchers traced ascorbate’s anti-cancer effect to the formation of hydrogen peroxide in the extracellular fluid surrounding the tumors. Normal cells were unaffected.
Natural physiologic controls precisely regulate the amount of ascorbate absorbed by the body when it is taken orally. “When you eat foods containing more than 200 milligrams of vitamin C a day — for example, 2 oranges and a serving of broccoli — your body prevents blood levels of ascorbate from exceeding a narrow range,” says Mark Levine, M.D., the study’s lead author and chief of the Molecular and Clinical Nutrition Section of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the NIH. To bypass these normal controls, NIH scientists injected ascorbate into the veins or abdominal cavities of rodents with aggressive brain, ovarian, and pancreatic tumors. By doing so, they were able to deliver high doses of ascorbate, up to 4 grams per kilogram of body weight daily. “At these high injected doses, we hoped to see drug-like activity that might be useful in cancer treatment,” said Levine.

Vitamin C plays a critical role in health, and a prolonged deficiency leads to scurvy and eventually to death. Some proteins known as enzymes, which have vital biochemical functions, require the vitamin to work properly. Vitamin C may also act as an antioxidant, protecting cells from the damaging effects of free radicals. The NIH researchers, however, tested the idea that ascorbate, when injected at high doses, may have prooxidant instead of antioxidant activity. Prooxidants would generate free radicals and the formation of hydrogen peroxide, which, the scientists hypothesized, might kill tumor cells. In their laboratory experiments on 43 cancer and 5 normal cell lines, the researchers discovered that high concentrations of ascorbate had anticancer effects in 75 percent of cancer cell lines tested, while sparing normal cells. In their paper, the researchers also showed that these high ascorbate concentrations could be achieved in people.

The team then tested ascorbate injections in immune-deficient mice with rapidly spreading ovarian, pancreatic, and glioblastoma (brain) tumors(this is the higher grade version of my tumor). The ascorbate injections reduced tumor growth and weight by 41 to 53 percent. In 30 percent of glioblastoma controls, the cancer had spread to other organs, but the ascorbate-treated animals had no signs of disseminated cancer.(This is amazing. These tumors are capable of doubling in size every week. Once they have spread, life expectancy is often a few weeks) “These pre-clinical data provide the first firm basis for advancing pharmacologic ascorbate in cancer treatment in humans,” the researchers conclude.

Interest in vitamin C as a potential cancer therapy peaked about 30 years ago when case series data showed a possible benefit. In 1979 and 1985, however, other researchers reported no benefit for cancer patients taking high oral doses of vitamin C in two double-blind, placebo-controlled clinical trials.

Several observations led the NIH researchers to revisit ascorbate as a cancer therapy. “Clinical and pharmacokinetic studies conducted in the past 12 years showed that oral ascorbate levels in plasma and tissue are tightly controlled. In the case series, ascorbate was given orally and intravenously, but in the trials ascorbate was just given orally. It was not realized at the time that only injected ascorbate might deliver the concentrations needed to see an anti-tumor effect,” said Levine, who noted that new clinical trials of ascorbate as a cancer treatment are in the planning stages.

Data from Levine’s earlier studies of the regulation and absorption of dietary vitamin C were used in the revision of the Institute of Medicine’s Recommended Dietary Allowance for the vitamin in 2000. In the current study, Levine led a team of scientists from the NIDDK and the National Cancer Institute (NCI), both components of the NIH, as well as the University of Kansas. “NIH’s unique translational environment, where researchers can pursue intellectual high-risk, out-of-the-box thinking with high potential payoff, enabled us to pursue this work,” he said.

This is just my prediction, but because of this research, eventually the pharmaceutical companies will come out with a new drug that contains Vitamin C, but is mixed with a chemical so that they can patent it, and eventually make an insane amount of money off of it. Natural substances can’t be patented, so chemicals have to be added. They often will add chemicals that allow the body to absorb the drug better (which is positive), but there is often a price to pay in the list of 100 side effects of that chemical, such as…..cancer. Yes, counter-productive. In my case, we are mixing the Vitamin C with DMSO. The DMSO is the carrier that will drag that Vitamin C into my cells. Cancer cells are naturally very attracted to DMSO, and the DMSO essentially pokes holes in the cells, allowing the substance they are bound with to permeate. It is a natural substance, with no toxic side-effects. Now doesn’t this seem like the more logical way to administer treatment? I think so, too. (climbing down from my soap box)

So that’s where we are now. Other than these silly medical nuisances, life around here is crazy. Tyler is going to start school in 2 weeks, which is SO weird. These past 5 years have felt like 10 with all that has gone on, yet it doesn’t seem possible that my son is starting school, already. He is very ready for some stimulation, I think. He’s very social and his mind is constantly churning, trying to figure everything out. Today we were talking about Auntie Kristy (my brother’s wife) being pregnant. He asked when she was going to have her baby and I told him in January.

“Really? She wants to have her baby in the winter? Hmm….I guess it takes awhile to make a baby, though, so that’s probably good. It takes God at least a couple of days”.

Out of the mouths of babes. I love their innocence. They have such a pure and optimistic view on life at this age. I often think that life would be so much more enjoyable if we could step back into that childlike mindset. It’s kind of ironic that children’s minds are considered naive, yet I think that it takes great maturity to be able to get back to that place where you have the trust and faith of a child.

Other than that, my husband is insanely busy. You would think that the dairy driveway was an expressway with all of the traffic going all day long. They are emptying lagoons right now with 3 tankers, the milk truck comes twice a day to pick up milk, Marvin’s dad is hauling random things throughout the day, we just had a hay barn built and we are currently having a new milking parlor built. So between all of that and the normal traffic of employees and people that actually live on the dairy, it’s crazy.

And Trent is just….well, Trent. Adorable with Marvin’s white hair, but just a little me running around in a 2 year old body. His characteristics are so much like me, that it makes me a firm believer in generational sin. Temper, things always on his terms, etc….he is the taste of my own medicine that everybody always promised me that I would get. He is challenging, but so much fun. I love this age.

As always, thank you for your continued prayers for healing. We are so blessed.

SO, after a week of nerve-wracking anticipation, the official word is that the MRI and PET scan results seem conflicting. Nice, eh? The PET scan is showing the area of tumor to not be uptaking any sugar. The PET scan in June showed that it was taking up sugar 2.5 times faster than the rest of the brain. So this either means that the tumor has responded to treatment and is downgrading/dying, or that the test was a false negative. The MRI, however, shows a slight increase from the MRI in April, indicating tumor growth. To be specific, the area of tumor has grown by .08 inches (yes, very mild). There are several things with this. This could be growth that happened between the beginning of April, when I had my MRI to mid-June, when I started treatment. I wasn’t on any treatment for those 2 months, so that’s entirely possible. Or it could be swelling from the response to treatment. The tumor will swell slightly upon die-off. Or, it could be that the tumor is actually growing. The tumor is not enhancing, which is very good. This suggests that it has remained a lower grade tumor despite the pathology of a high grade tumor after my February surgery.
What’s the next step? Good question. At this point, I am trying to get another PET scan schedule to rule out a false negative test. If we can do another scan and prove that the results are true, then this is EXCELLENT news. I think that I will for sure continue doing IV therapy of some sort, especially if the PET scan results are the same. The idea with this treatment is to stay after this thing, in hope that we can finally break it down. The clinic in Oklahoma said that brain tumors can be quite pesky, as we’re quite aware, and take 3-4 rounds of treatment.
The other possibility is that I will start on Temodar (chemo pills), but continue to do IV therapy, which actually compliments the chemo and makes it more effective, as well as keeps my immune system strong. This seems like a logical next step, as Temodar has very mild side-effects. Radiation is definitely out of the question. This will be a very last resort.
So this leaves us at needing a ton of prayer for wisdom. Please pray that I will be able to get another PET scan and that this tumor is indeed responding to treatment. We know that God is good and has us in His grip. He’s definitely putting us in a position where our faith is continuing to be tested, but what better peace is there knowing that He is in control?
Thank you so much for all of your prayers. We have definitely felt them over the past couple of weeks!

I still don’t have any written reports back from my PET or MRI, which I’m hoping to receive today, but from my MRI scan yesterday, the tumor looked stable. We don’t know for sure until we see the radiologist report, but we will be thrilled with that news!!! We want it to shrink or disappear, of course, but if we can keep a high grade tumor from growing in 4 months time, we’ll take it!!! I’ll post more when I get the official report.