Short intro about the blog

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

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.