Our Quest

December 27, 2009 Brain Tumor Discovered

Learning that you or a loved one has cancer is an overwhelming shock.  It is probably the last thing anyone wants to hear and it is one of those fears you hoped you’d never face.  There are suddenly so many decisions to make, and if you are like me, you don’t have enough information to make them.  Cancer is so scary and there is so much pressure to do something Right Now!

I knew that chemo-therapy and radiation had been around a long time and that there were many undesirable side effects for people who go those routes.  I also knew that cancer usually comes back and that often it eventually kills the patient anyway.  At the same time, we were told this was a fast growing tumor and that we needed to make decisions quickly.  My son has a learning disability, so in spite of wanting to keep him as informed as I could and respect the fact that he, as an adult, needed to make his decisions, I knew that I would need to be the one to study and explain things in a way that he could understand well enough to make those decisions.

What followed, for me, was hours and days of reading stacks and stacks of books.  I read everything I had at home in nutrition books, everything I could find on the internet, and I got zillions of books in the library on cancer.  I wanted to know what new, innovative techniques were now available.  After all, I thought, there has been a war on cancer for a long time and surely there would be some new exciting discoveries in medicine and in the natural medicine world.  I also wanted to use as many natural supplements and diet options as possible, because I am a believer that the body can heal itself if given the opportunity and the tools to do so.  I wasn’t sure the opportunity (time-wise) was going to be there, and I was prepared to do whatever it took to best help my son.

February 2010First Oncologist Appointment

Prior to our first oncologist appointment, we had only been told he had a fast growing tumor and maybe a year to live.  It took 2 months before we finally sat in the oncologist’s office and were told that he had two months to live.   It was like being hit by a rock. The oncologist told us that although brain tumors were among the most difficult to get rid of, he recommended Radiation.  At the same time, he said that most likely, radiation would give him an extra 2 months to live and if he lived beyond that, which was not likely, he would, at best,  begin to have dementia.  This did not seem like a very good deal – go through radiation every day for 4-6 weeks, have side effects and live 2 extra months.   What I heard was, drive 1 hour to the radiologist every day for 4-6 weeks, feel sick, have hair loss, so you can live a few weeks longer.  This didn’t seem like much of a life – at least that’s how my math figured it.  We agreed to be open-minded about it and see the radiologist next.

March 2010 – Started Cancer Protocol

The radiologist ordered a biopsy.  By the time that was done and we got the results , it was 4 months from the initial diagnosis of a tumor – about the time he was supposed to be dead.  In the meantime, we had found a medical doctor in California (Dr. Cowan) who was willing to work with us by phone and who had been successfully working with cancer patients.  Prior to speaking with him for the first time, I had created a list of supplements, from the reading I had done,  that had been beneficial to cancer patients.  I didn’t want to work on my own with these supplements.  I wanted to work with a doctor so that I could get the right doses and know which ones would be best for his cancer  The protocol he gave us addressed almost all of the important supplements I had written down in my initial quest.  The diet he is on is a nutrient dense diet, a more intense one than I already had him on.

April 2010 – Biopsy

For many reasons, we would have happily skipped having a biopsy, but our doctor in California, Dr. Cowan stressed that knowing the kind of tumor would help him to make treatment more specific. The neurosurgeon came out of the operating room and told me my son’s tumor was an Oligodendroglioma, which was one of the more treatable cancers, and that his life expectancy without treatment was now magically moved to a year.  He also said that radiation was not very effective with these, but chemotherapy was.  The oncologist, however, felt that both treatments would be a good idea – just for good measure.

The Test Run

I took a deep breath and said to the oncologist, “I’d like to make a proposal to you.”  In our initial meeting, he had seemed very up-to-date on the latest “experimental” treatments and on health supplements and who was using them with any success.  At that time, he said, “if he had 3 months, I would encourage you to try diet and supplements, but you don’t”.    So, now, after finding out that his cancer was a more treatable kind, I handed him a paper with the diet and supplements we were doing and told him we had been doing it for a month and would like to try it a bit longer and wondered if he could support us in doing this first before considering chemotherapy or radiation.  The April MRI had shown no further growth. He agreed and said he would do another MRI in three months and wait until then to see what happens.

No growth

At the time we found out he had a tumor, it covered most of the top of the left side of my son’s brain.  Two months later, it was growing rapidly and pushing on the right side of the brain.  The next MRI, after a month on our new Cancer Killing protocol, found there was no growth, and none since that time (9 months since that MRI, 10 months since starting this regimen).  I will concede that the diet may not have been all that stopped the growth.  Bryan was  no longer working at a very stressful job.  That could have also contributed to the reduced growth, but still, we were excited that at this time, it was not growing.

We would certainly like to see it shrinking, but he has more energy, has a better memory and after loosing 15 pounds (when he was already very thin), he is beginning to put on weight again and has gained back 10 of those pounds. On top of that, I have lost 35 pounds (which I needed to lose) and for the first time in many years, I am confident I’ll lose another 35 pounds in the next year.

All of this, improvement was accomplished without the hospital trips, loosing hair, throwing up, killing other non-cancerous parts of the body, exhaustion and frustration of chemotherapy and radiation.  On my part, the weight loss was accomplished without ever having to go hungry.

With this success behind us, I wanted to share ideas, web sites, recipes and most of all hope to others who, like I was, are searching for the kindest way to kill cancer.  This is not a protocol for everyone, and I do not suggest that everyone should choose to avoid chemotherapy and radiation.  The oncologist we are working with would say that diet and supplements help people who choose radiation and chemotherapy to have less side effects – that is reason enough to take a look at diet and nutrition.

This method has its own challenges and hardships.  It is a slow process and requires a change in lifestyle and eating habits.  Many people would choose taking a pill or radiation rather than make the changes this diet requires. After all, there is no easy way to get rid of cancer – yet.

June 2011

Bryan’s last MRI also showed no growth (no loss either).  Well, I should qualify that. The neurosurgeon who read the MRI and created the summary said it had grown slightly, but neither the neurologist or the oncologist could find any growth to show us, so we all think he was over-vigilant.   Bryan has put all of the weight back on that he had lost.  He rarely takes naps any more, usually can remember things like taking his pills, and works out in the yard. He is now volunteering one day a week at a local museum where he once worked.  He rides the bus there, so for the first time in a year and a half, he is doing something independent, without me there.

August 2011

We had quite a setback this month.  I was out of town for a week and Bryan ate almost no raw vegetables and only a few cooked,  and got mixed up on some of his supplements so he was not taking them.  His sister was working long hours so he did not have many reminders.  Although usually he takes everything fairly well without reminders, something happened while I was gone.  Two days after I got home he had a tremendous headache and vomiting.  He couldn’t hold anything down and his pain was quite severe.  Each day the pain lessened, but his headache lasted a week.

I fed him the most nutritious liquids I could, including broths, teas and once he could hold down liquids, kefir.  We used detox teas and stomach teas.  Whether it was a coincidence or not, the day I started him on Essiac tea, his headache quit and he began to improve more quickly.  During all this time his side ached in the area of his liver.  His medical doctor agreed it was his liver and took tests that did not show serious problems, so we just kept de-toxing and using herbs for strengthening his liver (Blessed Thistle and Dandelion).

For the month of August he was pretty weak, but slowly regained most of his strength. He did not go in to volunteer at the museum.  In September, he took the bus in and called me as soon as he got there because he felt the cigarette smoke smell in the bus made him feel sick.  We’ll try again some time in October.  He was doing so well, that it has been frustrating to see him slide back, but it was a reminder to him (and to me) that all of the little things we are doing to help him matter.  While he might miss taking or eating something for a day or two, he can’t consistently let things go.  It also told me that I can’t just take off for a week without someone monitoring him – disappointing.   Because he seems fairly normal on the outside, it is easy to forget that his brain doesn’t always work like it should.  He is not back to doing as well as he was at the end of July, he has steadily gotten closer, so we are just being super vigilant to get him back on track.

December 2011

Bryan’s MRI this month again showed no growth!  On top of that, the tumor is changing in some way.  The Neurosurgeon who analyzed the MRI said there are web-like holes with pockets of fluid.  This appears to be good news, though neither the oncologist or Dr Cowan want to speculate much, but some clear change is happening to the tumor.

Since the problems Bryan had in August, the neurologist suggested we slowly have him go off of Dilantin (one of his seizure medicines).  That was a long hard process.  Apparently Dilantin causes seizures (make sense?) and causes greater ones when going off of it.  The first week was tough (seizures and anger), but I gave him Vitamin B6, Triptophan, and GABA, all of which seemed to help.  During this time, our Naturopah suggested that making sure he was not constipated might help.  We gave him laxative type teas, and all of this seemed to make a difference.  Interestingly, the small “tick-like” seizures he had experienced a couple of times a week went away.  He has been off Dilantin for 2 months and only had 3 or 4 small seizures (instead of 2-3 a week).

Last week (December 30) we started (with the neurologist’s sanction) slowly reducing Keppra.  So far, the same supplements and herbs seem to have helped avoid serious withdrawal symptoms.

January-March 2012

It has been a year since I last updated this, so there is a lot to tell. Reducing Keppra slowly took more effort than going off of the Dilantin.  He had much more personality problems.  He had a seizure almost each time we reduced his dose (once a week) and then he would improve each week.  Again for the personality challenges (anger usually) we gave him Vitamin B, GABA, Tryptophan and worked on his ongoing problem with constipation.  By the last few weeks, we hardly saw any more problems with extra seizures or personality issues.  This was all that the neurologist wanted us to do, but we wanted to keep going and get him off of Depakote. We already saw less seizures and less severity.  We knew we wanted him off all drugs.

May – August 2012

We tried to see the neurologist in May to get an OK to slowly take Bryan off of Depakote, but we had challenges doing it.  Finally, at the end of May, Bryan just wanted to get off of those drugs too and I noticed he started to have headaches.  I was suspicious that Depakote was involved with those, but I knew it could also be that the tumor could be causing them.  We started to slowly take him off – a half of a pill a week.  Looking back, if I could do it again, I’d have gone slower.

Each time Bryan reduced Depakote, he would have 2-4 days of very bad headaches.   Then they would stop. He didn’t have more siezures from the withdrawal, and we didn’t see much personality issues, but the headaches were tough.

In June, Bryan had another MRI.  This time the neurosurgeon said there was growth.  The Oncologist said it was very small growth, but he would again recommend Timidar or some other action.  The Neurologist was unhappy that Bryan was going off Depakote, but we told her that the side effects were working counter to what we were trying to do.  For instance the constipation that was caused by the drug was interferring with the cleansing we were trying to do with the diet.  She seemed to accept that and I promised I would not let him have a bunch of seizures and would watch carefully.  She agreed with the speed (slowness) of how we were doing it.

Differently than the other two drugs, he seemed to get worse withdrawal symptoms the closer he got to being off of them.  He often had headaches that had him double up in pain and cry.  I read somewhere that fish oil helped so I doubled and sometimes tripled the fish oil he was taking and that seemed to help a lot.  We tried feverfew and butterbur and everything else we could find naturally, but the fish oil seemed to help the most.

On the last week, where he took no more pills (down from 4), his headaches got worse.  Finally on Wed of that week, I gave him 1/2 of a 500 mg pill.  In 15 minutes, he had one of the worst seizures he had ever had.  It left his right leg unable to move when he finally woke up from it.  I massaged his leg for two days before he was slowly able to walk on it again.

To me, this was the beginning of mobility problems for Bryan.  I could be wrong, but I think that the stress of going off of Depakote (and maybe all of them together), caused his tumor to flare up.  It was the end of August before Bryan could walk on his legs again, and still not as well as he had before.

But he had almost no more seizures.  The ketogenic diet alone kept him almost free from seizures. The few seizures he had were very mild, over quickly and did not leave him paralyzed as they often had in the past.

October -November

By the end of  October, Bryan’s right leg had become weak enough that he stumbled often.  I tried to get him to exercise, but he resisted. At the beginning of November I bought him a cane.  We borrowed a wheelchair  for a couple of weeks to get him to church.  I worked his legs a lot and by the end of November he was walking again, but he drug his leg a lot and he used his cane.  His memory was weakened.  I realized he was having trouble reading, but what was significant was that he had trouble with words like, “A”, “of”, “it”, “on”.  It was the kindergarten, 1st grade words.  He had no trouble with “opportunity” or “aptitude” or “compound”.  His sister worked with him with flashcards and his reading improved.

Our naturopath did a hair test on Bryan after I expressed a desire to give him more minerals.  It came back showing that every mineral in his body was at a super low level so we started him on HCL (hydrocloric acid). I was shocked.  We were doing so much for his digestion, I didn’t see how he could have low HCL. It was pretty depressing.  It meant to me, that all the good things we had been putting into him were not getting to him for 3 years.  I know that is a simplification because if he was not getting something he would not have lived that long.  Still, it was frustrating.

We switched in November to a 25 carb diet at Dr Cowan’s suggestion,  to see if that would help.  That was a tough thing because you even have to watch good things like vegetables.  We went off milk products for awhile because they had just too many carbs. We decided that if his January MRI still showed growth, we were going to try an experimental product (it was not a drug, but a molecule) called DCA (Sodium Dichloroacetate) which oxygenates the cells.

December

In December, before trying DCA, we tried Food Grade Hydrogen Peroxide, which also oxygenates, but in a different way.  One good thing about it, is that it cleared up Bryan’s tendency to constipation.  Still, his weakness in his right leg was increasingly a problem.  It seemed to come and go, but it was frustrating.  By the end of December, most of the time Bryan needed assistance besides his cane to move around – especially first thing in the morning.  I had to admit, he was getting worse, and that was hard..

January

Bryan’s MRI was scheduled for January 12th. All through the first week of January we were having to help Bryan get around the house.  He had fallen or slipped out of his chair several times and I couldn’t get him up – had to wait for his sister to come or call a friend.  I didn’t want to get him a wheel chair because I felt he wouldn’t try to walk any more and would loose movement in his leg, so I made him walk around the kitchen a few times every day (before January I had him walking outside).  Finally, the week before his MRI, I could not help him move around by myself – I had to have his sister on the other side.

On Monday before his MRI I helped him get up in the morning and into the chair right by his bed, but he was not able to help at all and it took all my strength to get him there. I had decided over the weekend that he might be having a healing crisis so I gave him mostly liquids.  He hardly ate at all on Sunday-was not hungry.  Once I got him in the chair and gave him his supplements and morning drinks, I told him he would have to stay in the chair until his sister arrived in an hour.  We got him into the living room and to the bathroom as needed. We put him in bed that night together. and she went home  On Tuesday I told him I was sorry, but unless we could get his leg stronger, I couldn’t get him in and out of bed.  He had been wearing Depends for a couple of months by then.  I told him we would just have to change him,  couldn’t get him to the bathroom.  That was disappointing to him (and me as well).  I started trying to find the best way to get him a wheelchair and a hospital bed.

He had an appointment with a physical therapist that week and I called her to tell her his situation and that I did not think I could get him there without special transportation.  She called the neurologist who called me and said that he needed an operation right away and he couldn’t wait until his MRI on Saturday.  She said he might not last that long.

I told her if it was that bad, that I knew he did not want an intervention.  He was sleeping a lot by then, not talking and not eating or drinking much. (Wed). She insisted he come into emergency and get an MRI and arranged for transport.  She also said if we didn’t do surgery, his only other choice was hospice. I told her hospice was a good idea.  She told me he might die without surgery and I said, “he does not want surgery, so if he dies, that is the decision he has made” And I cried.  I said, “that is really hard to say” and cried some more.

We waited 11 hours in emergency to get his MRI.  He kind of woke up on the way and was very alert and drank a lot of water while he was there, which made me feel better.  The neurosurgeon who came in to talk with us said the tumor had grown in several places and that an operation would only make things worse and prescribed a steroid.  We went home and hospice came in the next day with a hospital bed and a lot of wonderful help.

I ordered DCA and hoped for it to be the cure for him that it had been for some other people.  Bryan was alert and happy the whole time he was on hospice. From the time that he was in the hospital, he improved and ate more and drank more. It was hard for him to talk, but he nodded or shook his head and laughed at jokes.  His sister set up a talking program on his Kindle Fire where he could push a button to ask for food, drinks and other common requests.  He was sleepy a lot.

On Saturday, the 19th we made of video of some conversations with Bryan and encouraged him to talk because a speech therapist said it would help him strengthen his throat muscles so he wouldn’t aspirate as much. We sent the video to family to reassure them that he was getting better.  Sunday he slept a lot.  On Monday he slept even more. That night we tucked him in at 10.  At 12 my daughter checked on him before going to bed and said, “Mom, he is snoring, but it sounds odd”.  We went in and sat on either side of the bed.  He was sleeping peacefully, but his breathing was odd.  I looked at her and said, “there is nothing we can do  about that.  CPR wouldn’t help”.  We sat and watched him as he slowly stopped breathing in his sleep.

Over and over I had prayed that I would know what to do to help him get better, but if he was to go, that he would go quickly without much pain.  I was grateful for that answer to prayers.  He was with Hospice 10 quiet, peaceful days. May we all go, when our time is up as peacefully as Bryan did.

Looking Back

I am so happy that we made the choices we made to work on Bryan’s tumor from a nutritional perspective. He and I both believed that he would have died long before if we had chosen to follow the advice to do chemotherapy and radiation.  But even if we were wrong about that, I am so happy for the quality of life Bryan was able to have because of our choice.  He hardly had any headaches, and the worst ones he had were from withdrawing from Depakote.  He did not have to deal with all the side effects from Chemo and radiation.  And, though it may seem like a small thing, just the trips every day for 6 weeks to do radiation would have been hard on him.  Car trips always took recuperation.

Even if Bryan had not lived much longer than we were originally told he would, I would prefer to have seen him live as normally as possible, like he did than to have all the intervention that so many people we know went through.  Our decision might not be for everyone, but I personally believe he lived longer and lived better because we chose to build his body nutritionally and give it a chance to heal itself.

If we were to do it again, the one thing I would have done differently would have been to have gotten him off seizure medicines right away (he was put on them the first time he was hospitalized).  They made things worse for him as far as seizures, he became dependent on them and they were horrible to withdraw from.  They caused side effects that were just as bad, and in his case, worse than the tumor’s effects.  I believe they caused enough stress on him that they interfered with the ability of the body to heal itself.

I also wish I or someone would have thought about HCL in the first place.  I think it could have made all the difference in getting the nutrients to his body.

In February this year, I started a Nutritional Therapist program by NTA (Nutritional Therapist Association).  I signed up for the class to help Bryan, but he was already gone by the time the class started.  I hope that what I am now learning, and what I learned from experience will be able to help someone else who can live longer because of nutrition.

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6 responses to “Our Quest

  1. I am so sorry for your loss. Your story was very moving and inspirational. Brian was very lucky to have such a determined, loving mom like you. You did an awesome job. If I had to sum it up in one word it would be amazing! Thank you for sharing your story. Again, I am sorry.

  2. You are amazing! As I read your story, I can feel the deep love you have. Very inspirational and moving! Good luck! Please update every so often, I’d like to hear from you. Thanks!

    • Carolyn Miller

      Thank you Suzanne. You are very kind. I did update today – about a year’s worth of an update in one. I will try to do better answering people from here on out.

  3. I think of you when I pass by on the highway and wonder how things are going so was glad to read the latest update. What a long and difficult journey you are on. Sounds like all your hard work and research are paying off. Praying that will continue. Ann

    • Thank you, Ann, that is so kind of you. I think of you too. I am always grateful for prayers. I know they have helped us so much.

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