Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Monday, August 5, 2013

Golden Slumbers

That dangerously high fever at the end of June marked the beginning of Adam's last week. He spiked a fever on that Friday night, and then again on the Sunday. Over the weekend, he lost the ability to hold his head upright, and by Tuesday his chin was completely resting on his chest. The liver pain was constant, but controlled by painkillers. He was still as stubborn as a mule, however. He insisted on coming downstairs when he should have been in bed. While taking to his parents on the phone one morning, once again trying to convince them that he was fine, he refused to sit down and he fell. By Tuesday night, it was the fifth night in a row of Adam needing through-the-night care. He was having episodes of incontinence and needed his bedpads changed, and also needed morphine every two hours to keep his pain under control. It was clear that I was in way over my head, and I needed to summon an on-call nurse for help in the early hours one morning. A friend also stayed one night to help me bring Adam down the stairs when he insisted on getting up at some ungodly hour and needed a change of scenery. By Wednesday, the nurse agreed that it was time for Adam to be transferred to the hospice care unit. Adam was so debilitated that morning, that he couldn't even lift his head. He agreed to be transferred. As the day wore on, he started to feel better, and when my mom and I weren't looking he escaped out the front door to go for a walk on his own. I yelled for mom to quickly follow him, and the hospice transport ambulance pulled up at that moment. The paramedics were quite confused, as they didn't expect their patient to be standing outside the front door on his own two feet. The last they had heard that morning was that Adam was completely bedridden, and he was. But, those past few days, Adam would go from lying in bed, needing to be spoon fed and completely unable to lift his head, to walking down the stairs on his own two hours later. It was the most incredible emotional roller-coaster I had ever experienced.

Once in hospice care, Adam felt much better. They connected him to a morphine pump, which thanks to his catheter took mere seconds after he arrived. The regular dose of painkiller perked him up and made him much more alert. It also made him feel much better than he really was. He kept asking day after day when he was going to be discharged, which was really difficult. I managed to convince him each afternoon that it was too late to be discharged home, and why don't we just spend the night and see how he feels in the morning. I was beyond exhausted, and the break I got from being in the hospice unit was priceless. My prayer group friends all created a schedule so we didn't have to spend one moment alone. At least one or two friends were always in the room, even through the night to offer company and support. I can't put into words how magnificent that was. And the hospice nurses did everything. Absolutely everything. I was able to eat, sleep through the night, and relax. Adam's parents arrived from England, and were there to provide Adam with company and cherish some tender final moments with their son. As each day passed, Adam spent longer periods sleeping. I had suspected all along that he wouldn't make it through the weekend, but Saturday morning I left to go home and cuddle the boys, get a shower and change of clothes, and run a couple of needed errands. I had remained in contact with one of the ladies who was “on shift” and she told me via text messages that Adam was alert and smiling. But by the time I had returned with Calum (who wanted to come and spend the night), he was already asleep. And he never regained consciousness again.

It was late afternoon when the nurses noticed that his breathing had changed, and he seemed to be struggling to inhale. They changed his position and increased his medication, which helped somewhat, but the nurse let me know that she thought Adam might only have 24 hours left. We all started making phone calls to invite close family and friends. Within a couple of hours, the room was packed. My parents arrived, and my sister with her husband drove three hours to get there. By 10:00pm everyone was accounted for, and Adam continued to sleep. The nurse explained to me that it appeared that he was suffering from a brain bleed, and he was deteriorating quickly. We all watched as Adam took one breath after another.  Suddenly in the early hours of the morning, I had a really uneasy feeling and felt that I needed to pray for him.  I prayed like I had never prayed before. After what seemed like an eternity, the uneasy feeling went away. It wasn't immediate, but after a short while I smelled a sweet fragrance, like lilies but much much stronger. That is when I knew with all certainty that Adam was going to be fine. I was filled with a euphoria like I had never felt. For hours I rode the most unusual wave of joy, while watching my beautiful husband slip away. I kept whispering to him that I was so proud of him, that he was so strong, and that he was almost there. I kept encouraging him the best I could. My mother-in-law suggested we play some music for him, and I found the Abbey Road album in his iPhone. It just felt right, and when “Here Comes the Sun” came on I started to cry. We always loved that song, especially the boys. It was like a family anthem to us. I leaned over and asked Adam if I made the right choice in music, and he smiled. It was so fast, but he smiled, and that was the last communication I had from him.

The late night hours of Saturday turned over into Sunday. A couple of times the nurses excused everyone from the room so they could reposition Adam, and I stood behind the bed holding his head. When they would turn him, he would stiffen, but as soon as I stroked his face and assured him I was there, he relaxed. Eventually, as the early hours of the morning passed, I began to break down. I was so tired, but everytime I closed my eyes, Adam would stop breathing for a second. I couldn't do it. No matter how tired I was, I had to keep watching him. I just didn't want to look away for one second and miss his last breath. Finally, my bladder was crying out so loudly I had to take a break. I quickly went to the bathroom, and was able to stretch my legs and revive myself. It was nearing 5:00am. I got back into the room and my friend rubbed my back for me. I was in so much pain from bending over the bed, holding Adam's hand and his head for so many hours. A few minutes later the nurse came in and swabbed Adam's mouth. She tested his reflexes, and inserted the swab deep into his throat. There was so reaction, and she assured me that he was feeling nothing. A few breaths later he was gone. Nothing dramatic. He just didn't take another breath.

In the Catholic faith we often pray to St. Joseph, the Patron of a Happy Death. I never understood what that meant until that night. Adam had a Happy Death. He was surrounded by family and friends who loved him dearly. We were all praying incessantly through the night. He listened to his favorite music. And there were even moments of joy, like when we were listening to some of Adam's favorite 60s music and a few of us just couldn't help dancing a bit in our seats. I cannot imagine a better send-off into the next life, and I am so glad that Adam had that. I'm not going to lie, and say that this was easy to write. It was awful. I have put it off for many weeks, but I really needed to do this. I started this blog, and so I have to finish it. I don't know what the future holds for myself and my boys, but I am not despairing. I am completely at peace with Adam's passing, and I am so happy for him now that he is healed and with our Heavenly Father. And, oh by the way, he is still very present. He has communicated things to me, to family and to friends since his passing that could have come from nobody else. I smell him sometimes when I am walking through the house. And I have seen bunnies. A few times. I always called him “Bunny”, never “Adam”. He was always Bunny to me. And now I know that when I see a bunny, he's here. I saw him when I went to pick out his final resting place in the cemetery, and I saw him again on our anniversary. And he is still providing for us as head of this family. We have received incredibly generous gifts that covered the funeral costs and allowed me to pay off all of our debts. Every last one. And I know that's him. He always agonized over not providing a better standard of living for me and the boys, and now he's doing it from Heaven. There are brief moments when I feel tearful, but otherwise I am fine. I miss him. But, before I know it, I'll be taking my last breaths. We all will. And when that time comes, I can look forward to being with him again. It won't be in sickness or in health. It won't be for richer or poorer. It will only be perfect.

Sunday, June 30, 2013

The Seizure - Part 2

The paramedics got Adam settled into a room in the ER, and I sat down beside the bed. Celeste stayed nearby, and within a few minutes our favorite priest had arrived as well. The nurse assigned to Adam was very nice and did all the things that nurses do when one arrives in the ER. I wasn't paying very close attention to be honest. Yet another blurry experience in the hospital. When the doctor arrived he asked, “How are we all doing?” I automatically responded with, “Fine.” He smiled and replied with, “Of course you aren't 'fine'... you're in the emergency room!” He was like no ER doctor I've ever encountered. He had already looked over Adam's medical history, and he said something about our having chosen alternative treatment for Adam's cancer. I instantly became defensive and tried to show how non-alternative we were. “Well, we did have surgery to start off with... and then we did an FDA clinical trial... but they didn't work...” I can't remember what he said next, but it assured me that he wasn't judging us. In fact he made a joke about hating doctors himself. I think he just wanted to clarify our position before he started offering treatments. He also wanted to be respectful of our financial situation and the fact that we are “self pay”. There was no reason to start ordering the full battery of expensive tests to tell us what we already know. Obviously, Adam's tumor has continued to progress, as indicated by all his previous MRIs. And it's obvious that he had a seizure and fell. Adam's tongue was bitten in three places, which explained the blood on his face. And indicated the probability of seizure. The doctor asked if we wanted x-rays to rule out any injuries, but I said we could hold off and wait. If he did suffer any fractures, we would certainly know within a few days and could address that when and if it comes to it.

All this time, Adam kept asking what had happened. I would tell him, “You had a seizure, Honey. You fell into the bath headfirst.” And he would say, “REALLY? Oh my goodness.” Then a few minutes later he would say, “What happened... why am I here?” I would repeat, “You had a seizure, Honey. You fell into the bath headfirst.” And he would say, “REALLY? Oh my goodness.” This went on over and over and over again throughout the night. With every new nurse, or administrator, or visitor I would tell them what happened and Adam would say, “REALLY? Oh my goodness.” They took blood, got him hooked up to an IV and started getting anti-seizure and anti-inflammatory steroids into him. He also received a glucose drip to get his low blood sugar back up. They gave him pain relievers since he was so banged up, and he drifted in and out of sleep. Meanwhile, Celeste let me know that “everyone” had arrived. When I looked at her with a look of confusion on my face, she said, “All the ladies are back here... there's a little lounge around the corner... they are all here for support.” I still don't know quite how so many women were able to sneak into the ER for one patient, but there they were. One had popped out to get me some dinner, and I was able to eat and chat and laugh a little bit in the midst of such a horrible event. I remember being freezing cold, as I was still dressed in only running shorts and a t-shirt, so I got some decaf coffee from the machine and one of the ladies got me a blanket. Adam woke up a bit at one point and said he was hungry, so Celeste got him some peanuts from a vending machine. That little bag of peanuts didn't have a prayer... I'd never seen Adam eat so fast. Our family doctor stopped by to visit Adam before he was transferred upstairs, and discussed once again the details of the seizure and fall. Adam still had no memory of the seizure, the fall, or the trip to the ER. Finally, the nurse arrived to take Adam upstairs to the oncology ward. This was probably around 1:00 in the morning. My faithful prayer group was still well-represented, and they all fell into stride behind Adam's bed as the nurse wheeled him down the corridors. We joked about being Fundamentalist Mormons, and explained that we were all Adam's sister wives. All of us had a really good laugh, and Adam was in good spirits as well. Once he was settled in his room, Kim and I went down to the Subway to get Adam a salad, and when we got back everyone squished onto the sofa next to Adam's bed while he finally had his first meal of the last 24 hours. He cracked jokes and we all laughed a lot. It was wonderful, and weeks later it is the only thing about the entire hospital visit that Adam remembers.

Luckily he only needed to stay one night. He was well enough the next morning to take medicines orally and be discharged. He was still really shaky and unsteady on his feet. His tongue was horribly cut and bruised, and he had bruises and grazes on his forehead, arms, and back. But, he was still here, and I was so grateful for that. The first week at home was very stressful and scary. Adam woke up each morning jaundiced and with a high fever. The bruising on his back (which was all my fault from trying to get him out of the bath myself) caused him a lot of pain and made it very difficult for him to get comfortable on the bed to sleep. He had excruciating pain in the area where his liver is located. He also suffered from tumor symptoms: headaches, pressure behind his eyes, and whooshing in his ears. But, as the week wore on, he began to have moments in the afternoon where he could come downstairs and spend some time with the kids. He was gradually starting to feel a bit better. We finally seemed to find the right levels of medication to keep another seizure at bay and minimize the tumor symptoms. And we kept him on painkillers to minimize his discomfort. Finally, one day he was fit enough to go on a slow walk down to the end of our street. And a few days later he was able to come out to the playgroup's park day with the kids. He is still suffering with the odd fever and constant pain that seems to change day-by-day. He has had to be weaned off the steroids, as they were making him quite agitated and restless at a time that he needed to be resting and getting a decent night's sleep. This means he occasionally has pressure behind his eyes or whooshing in his ears, but the painkillers have proven very effective in keeping those symptoms manageable. Some days he feels almost normal, can get onto the internet and walk up to the post office with me. But the nights continue to be very difficult for him, filled with a lot of pain and the inability to sleep. He also suffered a dangerously high fever two nights ago, which is most probably caused by the tumor. As for the rest of us, the children watch an alarming amount of television, and I sleepwalk through each day trying to keep the kids fed and Adam properly fed and medicated. We have so many people pitching in and helping, it would be impossible to list them all. But, even though I'm not able to fully express it, I am so very grateful. And I feel the strength of everyone's prayers lifting me up onto my feet each morning. Without God's help, I would not be able to continue to function, and I give all credit to He Who sustains me.

Tuesday, June 25, 2013

The Seizure - Part 1

The boys and I had been looking forward to Friday. We had planned a hiking trip with another family, and my boys love hiking. Adam decided to opt out. He wanted to do a liver flush Thursday night, which meant he would be chained to the toilet Friday morning. We left the house around 10:00am, and Adam had already been using the toilet more than usual, as expected during a liver flush. He looked a little gray, but nothing made me feel like I should cancel the hiking trip. It took a couple of hours to meet up with our friends and get down to the trail, and as we meandered down Skyline Drive I saw a bright candy-apple red HHR. It was parked at one of the scenic overlooks. It caught my eye and made me nervous for a second, but I decided that unless I saw more than one, I wouldn't let it worry me. We got to the parking area, had a wonderful picnic and set out on the hike. About every 45 seconds one of my children would trip over a rock and fall. Most of the time it was Finlay. By the time we got to the top, they were covered in scratches, bruises, bleeding wounds, dirt and tears. But, they enjoyed it... really. There were just as many spills on the way back down, and Finlay managed a spectacular swan dive at the very end of the trail only yards from the car. Finlay had been begging for ice cream ever since we got into our friend's van, so it was agreed that we would stop at a McDonalds in Front Royal for sundaes.

Shortly after we left the trail parking lot to head back home, I saw another red HHR. We passed the scenic overlook where I had noticed the first red HHR, and it was still parked there. I thought that was a bit unusual, because people don't usually stay at a scenic overlook for the whole day. I was starting to get a bit nervous. I didn't have a signal at all on my phone in the mountains, but as soon as we parked up at the McDonald's I called Adam. He told me that he had vomited twice that afternoon, and he felt really sick. As I was talking to him a red HHR drove past. That was the fourth red HHR sighting that day. I finished my call with Adam and called my mom. I told her that Adam was really sick, and I was an hour away, so would she please go over right away and watch him until I got back. She promised me she would go over to the house straight away.

An hour later, we walked in the door. The first thing Mom said was, “Adam just went upstairs a few minutes ago... he thought he was going to throw up again.” I kicked off my shoes and used the downstairs toilet. Then I went up to check on Adam. The bathroom door was closed, so he was still in there. But, there was a strange noise, almost like a sucking sound. I thought maybe he was vomiting, so I turned to go down the stairs and give him a minute of privacy. I stopped on the second step and listened again. There was something wrong about that noise. Adam always locks the bathroom door. Always. But this time it was unlocked, so I went straight in. The scene was so confusing. Nobody was on the toilet, and the seat had been ripped off. My eyes fell on a body in the bathtub, but the head was missing. The sucking noise was loud and clear. Adam was crumpled in the tub, his head completely folded under his shoulders, and his body was struggling to breathe. I grabbed his shoulders and pulled him up. He was completely unconscious, and it was incredibly difficult to lift him. His head kept bobbing forward, so I kept trying to hold him upright while keeping his head up. It was so awkward. This was all happening within a fraction of a second. I started screaming for my mom. I've never screamed so hard in all my life. Finally she came up and I yelled for her to call 911. I kept shouting and shouting and shouting. She was moving so slow. Nobody could have moved fast enough for me at that moment. Adam had blood on his face, but I didn't know from what. I knew I had to get him out of the bathtub and lay him on the floor. I put my arms around him and under his armpits and started pulling. I yanked, I pulled, I lifted with everything I had and I just couldn't get him out. He was so so heavy. I shouted to Calum and told him to run to the neighbor and ask her teenage son to come help. Meanwhile I kept pulling. Calum came back and told me that no one answered. So I told him to go to the other neighbor, who we have never spoken to, but there are three adult sons living there. Calum came back with the oldest son who came in and helped me pull Adam out. We got him onto the floor, and I pulled Adam's underwear up over his pelvis. He must have been sitting on the toilet when he fell in to the bath. The neighbor asked if there was anything else he could do, but I told him thank you, no. Adam was starting to regain consciousness, but he was totally out of it. He didn't seem to know who I was and was unable to speak. He kept groaning and trying to sit up, but he couldn't. I kept repeating to him, “It's me, I'm here, please lie down, just lie down.” He didn't seem to hear me. The first paramedic arrived and I got out of the way. He spoke to Adam and told him he was going to pull him into the hallway, where there was a bit more room. Other paramedics arrived and it got crowded very quickly. Adam was on the upstairs landing, trying to get up, and collapsing, groaning and grunting all the while. It was agonizing to watch. They had a stretcher downstairs ready and waiting to load him into the ambulance, but they had to get him down the stairs first. One of the men asked me for Adam's name and date of birth, and a list of his medications. I ran to the kitchen and started writing out the list, but my hand just couldn't write. It was barely legible, and I handed it to the police officer standing in my living room. I started scrambling around thinking about what we needed to bring, and the boys were standing in the downstairs hallway with my mom. Calum was crying and he asked me if Daddy was going to die. I looked in his eyes and said, “I don't know.” My mom took my keys and said she would take the boys back to her house to get them away from the madness. They left, and the paramedics got Adam wrapped up in a hammock-like tarp and carried him down the stairs. Adam was getting quite belligerent and they had to tie his arms down. He was groaning and straining, trying to break free. He just had no idea what was going on. They got him onto the stretcher and loaded into the ambulance, and I was told to sit in the front passenger seat. We sat there forever. Honestly, it must have been 5 minutes, which at the time felt like eternity. We finally got the all-clear and started on the 25-minute trip to the hospital. Adam started roaring in the back of the ambulance. It was a sound like nothing I'd ever heard. It was like Chewbacca in agony. I started to cry. I had been in shock up to that moment, but that awful awful roar just broke me. Thankfully, the driver wasn't interested in talking and left me alone to sob. Finally, about halfway to the hospital I heard the most amazing sound I'll ever hear in my life. Adam shouted out at the top of his lungs, “SHIT!” He just kept yelling “Shit! Shit! Shit!” I felt a wave of peace come over me, and I knew he was going to be okay. Who knew that a four-letter expletive could sound so beautiful. The paramedics got him calmed down, and within a few minutes Adam was answering questions with ease. By, the time we pulled into the Emergency Room ambulance bay, Adam was holding a conversation. My friend Celeste had already arrived, and walked up to me next to the ambulance. We followed Adam and the paramedics into the ER, and they asked Celeste to get some visitor badges for us while I followed the entourage into a room.

Saturday, June 8, 2013

Catching Up

Four months have passed. I apologize for my utter lack of communication. Life had started to become a giant rollercoaster, and I've spent so much time half asleep, blindly stumbling through each day. I had no interest in writing, nor even checking the blogspot. This is the first time I have logged in and loaded it up since February.

In January, we discovered from Adam's MRI that the three small lesions that were present at the beginning of his new treatment had now fused into one moderately-sized tumor. Four months of intravenous treatments, a strict vegetarian diet, daily detoxing treatments consisting of sauna and coffee enemas, handfulls of vitamins and cancer-fighting supplements... all of it had yielded disappointing results. I started to see the very real probability that Adam might not achieve the healing we had all been hoping and praying for. I started losing control of the house little by little. Homeschooling dropped off completely, I stopped cleaning, grocery shopping and cooking became a tiresome chore. My mother started coming nearly everyday to wash dishes and take dirty laundry back to her house.

Suddenly in March, Adam had a sudden surge in symptoms. Blue flashing lights in his peripheral vision, whooshing in the ears, headaches, neck pain, a mysterious bout of jaundice, stomach pains, alternating diarrhea and constipation, confusion, and memory loss. For over a week, I desperately tried to get the attention of one of Adam's doctors. The New York doctor didn't get my messages and was out of the office. The Aldie doctor was in Africa. I had nearly fallen apart completely, when I spoke to the IV nurse in Aldie, and she convinced another doctor to see Adam. She and I both agreed that the tumor was causing the symptoms, but Adam was frantic to find other possible causes. Finally, an MRI was ordered and I could see from the images that there seemed to be two tumors with lots of glowing white matter. Glowing is bad. Glowing means “active”. We waited yet another week, with one maddening delay after another dragging out the release of the official radiology report. I had been wrong in my unprofessional assessment. It was one large tumor with a sizable necrotic hole in the center. Necrotic means dead tissue. Necrosis is great when it's on the outside of the tumor, because it means the chosen treatment is killing the tumor and it is shrinking. Necrosis on the inside is never good. This means the tumor is outgrowing it's blood supply, and is aggressively increasing in strength and size.

I expected Adam's doctors to be honest with him. I expected them to admit defeat and wish him well, as they had reached the limits of their healing ability. I would have had infinite respect for them if they had done so. But, they didn't. Adam's New York doctor was full of hope and told us not to be alarmed. There was still a chance!! We can still turn this around!! We'll just administer the vitamin C infusions at the highest dose and change from an alpha lipoic acid complex to straight alpha lipoic acid. That's all. That was the new plan. I was not happy with the new plan. I was not happy at all. A trench started to open between Adam and I as I became more and more frustrated with the apparent uselessness of continuing the same treatment with only a subtle tweak, while Adam clung to the changes convinced that THIS would finally knock this pesky tumor on its head.

I was tired of tip-toeing around and pretending that everything was going to be okay. I needed support. Lots of it. A friend suggested contacting hospice and exploring their services. I liked what I heard, and I convinced Adam to meet with them as well. I was falling apart, and I needed hospice! We met with them, and after an initial resistance, Adam agreed that it was a good move. We now had 24-hour emergency support should something happen. They equipped me with an emergency kit in case Adam suddenly had a massive seizure, a nurse was assigned to come once a week and monitor Adam's health, a doctor assigned to his case if needed, and I was able to secure the help of a counselor (for me) once a week. We also began a relationship with the social services liaison, who helped me navigate the complex web of applying for benefits (which we didn't qualify for) and getting Adam on disability (which he did qualify for). Finally a music therapist started coming once a week for the kids, and we all love her and look forward to Friday mornings. I can't say enough about how wonderful hospice has been to us and how infinitely valuable their support is right now.

After a rough week of uncomfortable and disorienting symptoms, Adam suddenly started feeling better. Except for the odd blue flash or mild headache, Adam felt fine. I had already asked my in-laws to come over as soon as possible and so the month of April was spent in a flurry of activity. Adam's parents came and cleaned up the place (which it desperately needed) and renovated our living room with a fresh paint job (which really helped lift our spirits). But most of all, they were able to help with driving Adam to the clinic, because now Adam and I both felt that with the disturbances in vision it was best that he not get behind the wheel.

Unfortunately, with my in-laws departure at the end of April, both of us were left without any distraction. Neither of us noticed the other falling into a depression, but it was happening. I started dipping into the vodka or whiskey bottle nearly every day for an afternoon cocktail, while Adam became less patient with the kids and less motivated to try and run his already slowing business. Every time he would have a moderate headache or bout of indigestion, I would panic and fall apart on the inside, slipping deeper and deeper into the hole. We received a donation from a friend halfway through the month of May with the instructions to “Go and have fun!” So we did. We saw a film at the Alamo cinema and planned a day at Kings Dominion. The night before our trip, Adam had his worst episode yet. Complete lack of appetite and nausea coupled with a very painful stabbing headache behind his right eye. For the first time we discussed the need for steroids, and I told the children we may not be able to go to the amusement park as planned. But, miraculously, the next morning Adam felt fine so we packed up some steroids in tablet and injectable form just in case, and had an absolutely wonderful day. Adam had another similar episode a week later, but otherwise has felt okay.

After our new and exciting foray into actually enjoying life and having fun, I suggested to Adam that we try and make a habit of it. Our separate depressions were dividing us as a married couple, and were slowly destroying our family. I had hit rock-bottom, was starting to develop a drinking problem, and had cut myself off from friends as I started withdrawing deeper into my depression and away from my husband and children. Something had to change. So I suggested a total paradigm shift. Instead of focusing on the negative, on the tragedy that might be approaching in the near future, what if we focused on today. Just today. I know. Everyone says we should take one day at a time and focus on the present. I'm telling you now, it is near-enough impossible when we are facing our reality. But, we are going to try. We have decided to commit to finding one small thing everyday to try and lift our spirits. Maybe an unscheduled movie night. A walk to the playground. Sitting on the floor and playing just one game instead of saying “I wish I could, but I have to start dinner”. So far we are doing it. And changes are happening. The house is a little bit cleaner, and we have started homeschooling again. I'm enjoying preparing meals a little more, and the warmer weather is making it much easier to go outside and get a little sunshine. Adam and I are back to normal, and really making the most of everyday. We've discovered Downton Abbey, and try to watch an episode each night after the kids go to bed, instead of me jumping on Facebook and Adam working on his radio blog. It feels good, and I am starting to feel whole again. Sure, we don't know what's coming, or what tomorrow or next week will be like. But, for today, we are just going to talk about today. And today is good.

Saturday, February 16, 2013

Be Still

We're stuck in a holding pattern. Lately, I have seen and heard so many references to one particular biblical passage: Be still and know that I am God. So that is what we are doing. The cold, gray and dreary winter we are having seems to be helping us do just that. We don't go out much. Homeschooling has slowed to a pathetic crawl once again. We do the bare minimum in all things, except for Adam's protocol. He continues to walk 3 miles, take a coffee detox, spend 30 minutes in the sauna, and eat a strict sugar-free vegetarian diet. He travels to the clinic twice a week for infusions. Everyday is eaten up by his cancer protocol, and leaves only a handful of hours each week to devote to the business. Even that is only just creeping along. Thanks be to God, we still continue to receive donations from family, friends and the community to keep us up to date on bills. Without the generosity of countless people, we would have lost the house long ago.

Adam's last MRI in January was disappointing. His three little peanut-sized lesions from August have now banded together into a sizable walnut. Both of Adam's doctors, here and in New York are scratching their heads. His chiropractor and nutritionist are scratching their heads. Adam is scratching his head. Nobody can understand it. He is doing absolutely ev-er-y-thing right. There is no obvious reason as to why his tumor should still be growing.

But, I keep hearing “Be still and know that I am God.” Adam's doctor suggested stopping the B17 for now, and replacing it with something called Salvestrol. He is now receiving Poly MVA via IV on infusion days. Adam now has the sauna, thanks to the donations of several organizations, and is faithfully using it everyday. He continues to hope that these changes will make the difference. He is still positive and focused on beating this cancer.

I, however, have changed my view. When I saw the images of the January MRI on our computer, a part of me died. The part that thought that anything I could do would save my husband. I'm not in charge here. God is. And God in all His perfect Wisdom has deemed it necessary for Adam to go through this. And for I, his wife, to go through my own related suffering. No diet, no magic supplement, no exercise regimen or detoxing treatment will rid Adam of his brain tumor. If God's hand is gently cradling that tumor, and making it grow despite everything we've tried, than that is His will. And His will is perfect. After finding my way out of the emotional devastation of last month, and the unfathomable disappointment and immeasurable fear of losing my husband, I am now in a new place. Acceptance and complete surrender. Here is a quote from a book titled “Trustful Surrender to Divine Providence” for you to chew on for a minute:

"To remain indifferent to good fortune or to adversity by accepting it all from the hand of God without questioning, not to ask for things to be done as we would like them but as God wishes, to make the intention of all our prayers that God's will should be perfectly accomplished in ourselves and in all creatures is to find the secret of happiness and content."

The secret of happiness. It sounds pretty good, doesn't it? It also sounds a bit crazy. Accepting all? Like, even the bad stuff? Who would think that accepting poverty, suffering, humiliation and failure could possibly make us happy? But, I think it can. Ever since I've turned this corner and started accepting this past year and a half as entirely within the control and intent of God, I feel so relieved. A weight has been lifted and all the soul-destroying fear is gone. Fear of the unknown. Fear of being widowed. Fear about money and whether we will eventually lose the house I love, and fear of having to support a family with three children on my own... it's gone. Well, to be honest it still bobs up to the surface from time to time (fluctuating hormones seem to make that happen), but I feel an overwhelming peace. You know the one. “The peace of God which surpasses all understanding” that St Paul writes about in his letter to the Philippians. It really exists, and it's wonderful. It goes against every fiber of my being, but when I can push my pathetic human reasoning aside, it opens up into a beautiful and comforting place. If I can find this place, then absolutely anyone can. My prayer these days is not for Adam's healing. God knows my preference here. I don't need to tell him anymore. But, I am asking Him to bring Adam over here with me to this peaceful place. We are already riding one horrible roller coaster. Why not let God envelop us with His love and perfect intention for us, and ride it out filled with joy? Why not, indeed.

Tuesday, January 15, 2013

The Hardest Journey

I don't even know how to begin writing this post. I haven't written in a long time, and it feels strange doing so. I used to love to blog. I really did. I loved researching topics and sharing with friends and family all the things Adam and I were learning. But, last month something happened that devastated me. It devastated me so deeply, that I find it very difficult to write and share my feelings anymore. This blog was my pride and joy. But, I discovered that a small group of people were taking my words, distorting them, and presenting them in a way to defend their own beliefs about alternative cancer therapies. The choices that Adam has made regarding his cancer treatment were ridiculed. And comments were made by readers that implied that I was an overbearing wife, forcing my ignorant beliefs on my husband, and therefore costing him his chances of survival. It still hurts writing about it nearly one month later.

There is a hard-core group of skeptics out there who insist that the Burzynski treatment is a scam. They have never had cancer. They have never been to the Burzynski clinic, nor have they ever received treatment there. They do not know one single person who has been a patient at that clinic, and they have no evidence of any former patient being dissatisfied with the treatment received at the Burzynski clinic. But, they have their beliefs. Fine. Everyone is entitled to their own opinion. The problem is they are taking excerpts from patient's blogs about their struggles with cancer, twisting them, and presenting them as damning facts in an attempt to prove that Dr. Burzynski is a charlatan. The most shocking are the judgmental statements about parents who chose the antineoplaston treatment for their son or daughter, and watched their dear child lose their battle despite the treatment. I was angry about the way they used Adam's story, but I cried for the parents who lost their children to brain cancer, and the callous way someone could showcase their story on a website, only to ridicule their decision.

Let me say this about the Burzynski Clinic. Keep in mind I have been there. I was there for 5 weeks. I met Dr. Burzynski several times, and met nearly everyone that works in his clinic. His treatment works. It does not work for everyone, but it does work for some. He doesn't claim a 100% cure rate. But, I know people who have been cured by his treatment. On our journey, Adam and I have met a lot of people with brain cancer. Most of those people we met through the clinic. And some of them are cancer-free today. And it is due solely to the Burzynski treatment.

One last point about the patients of the Burzynski Clinic. The skeptics would have you believe that everyone that walks through the doors of Dr. Burzynski's building is clueless, ignorant, and has been unfairly taken advantage of. The patients I met were the most educated people I have ever met regarding modern medicine and cancer treatment. And I mean all cancer treatments, including the conventional methods. They have spent thousands upon thousands of hours reading about chemotherapy, radiation, all the cancer drugs available, what is available in clinical trials, and every alternative approach ever attempted to defeat cancer. They know it all. They know the statistics and have read all the studies. They often know more about cancer than many oncologists. They understand how and why it develops, and they understand how it can be controlled. I am proud to be a part of this club. And we all found our way to the same place.

All that said, I now want to share something I discovered today. Often in alternative circles, one statistic regarding chemotherapy gets thrown around a lot. The 2% thing. A study was conducted in Australia regarding survival rates of cancer, and the conclusion was that chemo only improved survival rates by an average of 2%. That doesn't mean that only 2% of cancer patients receiving chemo survive past the 5 year mark. But, some people have wrongly interpreted it that way. What it really means is that if everyone that has ever been told they have cancer, be it Stage 1 prostate cancer or Stage 4 lung cancer, has an average “survival” rate of 60%, then chemo will increase that percentage by 2%. The term “survival” or “cure” refers to the 5 year mark in the cancer world. If you live 5 years after your diagnosis, you are considered cured. If you die one week later, you still maintain your place on the cure list. Now, if you have a 60% chance of making it to 5 years, then this study proved that chemotherapy will increase your chance by 2%. So, after chemo, you will have a 62% chance of survival. It's different from the idea that only 2% of chemo patients “make it”, but it isn't exactly a glowing report either. And it depends entirely on the type of cancer. According to other studies, cancer patients with high grade astrocytomas have a 3% survival rate. According to the Australia study, brain cancer patients who receive chemotherapy increase their survival rate by 3.7%. Now you might say that doubles their chances, and you would be right. Having a 6.7% chance of living for 5 more years does sound better than a 3% chance, but then you have to consider the side effects of chemo and the quality of life you could expect afterwards. The quality of life issue is a major deciding factor for Adam, and that is why he feels so strongly against trying any sort of chemotherapy. For others, it may not be a factor, and therefore choosing to try chemo makes sense. That's the thing about cancer. Every single patient is on their own journey. Every single patient has to decide what is right for them. Many people have complete faith in the medical system, adore their doctor, and will do whatever they are advised to do. They aren't crazy about researching, or maybe they just aren't very good at it. Or maybe they have read the studies and countless books about cancer, and have reached the conclusion that for their cancer, for their stage in life, and for their particular situation that modern medicine is the only way to go. I would never criticize or judge anyone for the choices they made regarding their cancer treatment. REGARDLESS of how it turned out. Adam and I have spent a full year learning everything we possibly can about cancer. We have dedicated ourselves to researching different aspects of cancer development and treatment, and have combined our knowledge and decided together (with God's confirming signs) how to proceed. We have absolutely no regrets. And I sincerely hope that no one else on this incredibly difficult journey has regrets either. We are all doing the best we can, and we all have the same hope and dream. And that is just to live as many more days as possible.

Wednesday, December 19, 2012

Living Food

I haven't been seized by the desire to write about a particular topic this week, so I thought I might post a few recipes. You may be wondering what we do for breakfast around here. Then again, you may not. Either way, I'm going to share our morning routine with you! I get up around 6:30am and shuffle around the kitchen bumping into the dining table for about 20 minutes. Once I finally gain my bearings, I prepare Phase 1 of breakfast. In this house you get two choices for breakfast: muesli or hot porridge. Ali, Finlay and I prefer the cold cereal, so we get to eat first. Also, Finlay gets picked up for school at 7:50am, so I need to make sure he's fed early. My muesli recipe is pretty easy. I keep a large Rubbermaid container filled with a mixture of 2/3 organic rice puffs, and 1/3 organic millet puffs. After this goes into the bowls, it's time for the toppings. The kids like to sprinkle their own toppings on if they happen to be up, otherwise I do it. I get out unsalted sunflower seeds, unsweetened shredded coconut, chopped pecans, and raisins. After all these are sprinkled over the cereal, I finish off with a sliced banana. The boys can choose whether they want unsweetened coconut milk or almond milk. These days they are going through an almond milk stage, but I prefer the coconut milk. There's more fat in it. And I'm a big fan of fat.

Once the younger boys are taken care of, and Finlay is off to school, then I start Phase 2. Calum and Adam prefer porridge, so I make oatmeal. I make a batch large enough for three days, so I don't have to prepare it from scratch every morning. If you aren't a big fan of oat porridge, then you really should try this recipe. It's really really good. Unfortunately for me, when I eat porridge I'm starving 30 minutes later. It just doesn't hold me like the muesli does. Anyway, I bring two cups of unsweetened coconut milk plus two cups of water to a boil. I add two cups of rolled oats, and lower the heat to medium-low. Let this simmer with the lid on for 10 minutes, stirring occasionally. When it's done I add one tablespoon of organic unsalted butter, one teaspoon of vanilla extract, and one teaspoon of cinnamon. Calum likes sunflower seeds, brown sugar and sliced banana on his. Adam gets ground flax seeds, banana, and chopped walnuts with a splash of coconut milk. As you can see, we go through a ton of bananas. The boys snack on them as well, so we devour a large bunch daily.

This probably sounds like a lot of work for so early in the morning. It is. I also spend a good two hours in the kitchen preparing lunch, and then another two hours again to prepare dinner. I spend an awful lot of time in my kitchen each and every day. Good thing I really like my kitchen. I know most of you would never dream of spending so much time preparing food everyday. Luckily, I love to cook. I've always prepared food from scratch and have always made the effort to cook a really healthy homemade dinner every night. Now I've had to step up my game to the ultimate level. If you don't have developmental delays, neurological conditions, food allergies, chronic migraines and cancer represented in your household, you may struggle to find the motivation to spend so much time and energy preparing meals. But, you may have other motivations. Perhaps you have seasonal allergies, joint pain, insomnia, excess weight, PMS, asthma, or any other number of various ailments plaguing your family members. It might be time to re-think the way you use your kitchen, and what positive changes you can make to your dietary health.

If you haven't seen these before, take a look:

These are Kirlian images of a tomato. The tomato on the left is raw, and those little beams of light are energy being emitted from that little raw vegetable. The tomato on the right has been lightly steamed. The energy has been dimished somewhat, but there is still evidence of a life-giving force coming from within the tomato. I haven't been able to find Kirlian images of, say, a Stouffers lasagna, but I would be willing to bet that there aren't any beams of light shooting out from within it. We've heard it all before, that whole foods are better for us. But, look at those photos! It's more than a simple case of fat, calories and carbs. Whole foods contain valuable vitamins and minerals, but they also contain beautiful radiating energy. Here's something else you can't measure in a lab. Recently I watched a YouTube video of a pale thin raw vegan chef making kale chips. She had a breathy voice and a very airy way about her, which I found mildly annoying, BUT she said something that really grabbed me. She said that she really likes to handle her food as much as possible while preparing it. She feels that through her hands she can take advantage of that radiating energy, and make it hers. I can totally see that. I've been tempted to acquire a food processor to help me with the endless chopping, shredding, and dicing. But, I think the vegan chef is right. When I handle vegetables all day long, washing, peeling, dicing, chopping, and slicing, I'm exposed to that radiating force within it. That is just as nourishing as eating the food once it's prepared. I also have a very firm belief in the X-Factor of homemade foods. I am convinced that when I prepare and cook food completely from scratch, using my loving hands, that MY energy is transmitted to the food. That energy and love then travels into my husband and children when they consume what I've prepared. The secret ingredient is love, people. Maybe it's sounds a bit crazy, but we all know the unspecified power of homemade food prepared by none other than Mom. You are missing out on so much when your diet consists primarily of processed food. That Stouffers lasagna has been prepared by a machine. Where's the love? It ain't there. If your children eat cereal from a box for breakfast, bologna on commercial bread with potato chips for lunch, and a rotisserie chicken with frozen peas for dinner... you haven't actually touched any of it. There has been no transmission of your love through the food into your family. We have been preparing food the good old fashioned way since Adam and Eve, and only in the past generation have we gotten so far removed from the basic art and pleasure of cooking food for our families. I know everyone is busy, and many women work outside the home. But, it is possible, even if only a few dinners a week, to make a simple meal from scratch for the sake of your health, and the health of your family. I can put together a salad, broiled fish, and homemade potato wedges in 30 minutes. You can find a few recipes that everyone enjoys and that you can lovingly prepare in a short amount of time. And you will reap the benefits of handling that food as well. Now get in that kitchen!