Short intro about the blog

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



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.

4 comments:

  1. Oh Vanessa, I just want to cry for you. I'm sending prayers.

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  2. I'm so sorry for your depressions but I think you are finding some good solutions!!! Are you able to find some time for exercise? (Serotonin boost)

    I have placed your family on a prayer line at my church. I was approached by the Knights of Columbus rep for our Parish who wondered where you lived. When I said VA, he said, "Ohhh." However, he wondered if the K of C in your area was aware of your situation. They sometimes do fundraisers and might be able to help you guys out. There's also St. Vincent De Paul's that might be able to help with housekeeping and meals for you. I hope you've reached out to these church organizations. I wish we lived closer. How far are you from DC? (random question but my daughter is out that way and I'm wondering if she could swing by to help with the boys on occasion for you)

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    1. This is Jennifer from Cathmoms, btw

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  3. Many prayers going up daily from our house! Please do let us know if there's anything we can do to help. God Bless, C

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