In case any of the people in my life are wondering: yes, I know I'm a control freak. I strive to be organized, in charge, and on top of things. I like to be right. I'm not good at admitting weakness, or comfortable with being wrong (even when I'm able to admit it, it's painful for me). Cancer flies in the face of every aspect of how I try to live my life.
My dad died of cancer, so it's not like my life has been untouched by this awful disease. He was 68 years old when he was diagnosed with advanced, terminal, esophageal cancer. They did surgery to remove as much as they could, but the surgeon told us when he came out of the operating room that dad would not survive this disease. He passed away less than a year later. It was a heart wrenching year for my whole family. Dad had lived with Parkinson's Disease for a dozen years, and he actually expressed relief at the cancer diagnosis saying he would rather die of cancer than spend 20 more years with Parkinson's. I saw my dad nearly every single day of his last year, and I was at his bedside with my mom and my husband when my dad passed away. I did not see him the day before he died. He called me to tell me not to come over; to stay home and rest, because Jessica and Alex (age 4 and 6) both had pneumonia and I had been trying to take care of them, work, and see my father daily. He told me he loved me. That was the last conversation we ever had. He was not conscious when we were called to his bedside the following morning.
My childhood was mostly good. I was raised by loving, imperfect parents and the youngest of five siblings. They were enough older than me, that by the time I was a freshman in high school I became more of an only child. I'll spare you the trials and tribulations of our big, messy, headstrong family. We had our ups and downs, as families do. What I will say is that I felt that my life was not within my control for a lot of my childhood and adolescence. I also felt that I it was my job to be a "good girl," to take care of people, and to make things better.
One of my primary goals as an adult has always been to be in control, to be proactive, and to make things better. I'm finally, at age 52, catching on that I've been deluding myself for decades. Life is just messy, and tumultuous, and difficult, and beautiful.
I used to think that Alex's autism was the most painful thing I had experienced in my life. I'm ashamed to say that now. His autism has brought him tremendous challenge and, at time, pain; and that has been true for our family. But I could not love him any more, nor could I be more proud of him, if he didn't have autism. Autism doesn't define him, or our family, but it is an integral part of him. Just like his smile, his sense of humour, and his blue eyes. Alex's autism, and certainly his life, is not a tragedy. Now that I'm faced with the very real possibility of losing him, I want desperately to hang on to every messy piece.
Today we go to see a cancer specialist to find out what's next. The cancer isn't gone. More treatment is undoubtedly needed. Writing this without knowing what's next is, in itself, a risk for me. Will I be embarrassed that I shared my feelings if the news is better than I expect? Who am I kidding, the news can't possibly be good! All of that is rolling around in my head. So, I'm taking a risk. I am, literally, throwing up my feelings on the page this morning. And then I'll dry my eyes, take a deep breath, and think, "show time." I'll put on a brave face, go pick up my son, and John and I will drive to the hospital, meet with the doctor, and then we'll do what needs to be done.
I may have to accept that I am not in control of this situation. That doesn't mean I'm giving up the fight. As John said to me this morning, "We'll do what needs to be done. We always do."
Friday, September 25, 2015
Wednesday, September 9, 2015
One Step Forward, Two Steps Back...
When Alex was in his first years of elementary school, it seemed that every accomplishment or period of growth was followed by a time of challenge. We started saying, "one step forward, two steps back." He'd make some progress with communication, or interaction, or self-regulation, but then it was as if it cost him so much to make those gains, he had to just fall apart for awhile. At times, it felt like he was regressing, but then - eventually - he'd re-emerge with that new skill intact after all, and layer on something new. It was certainly an exercise in patience for all of us.
Alex's cancer journey has been remarkable for all of us. Like everyone's cancer journey, I suppose, more has been asked of our family than we ever thought possible. Alex has shown tremendous resilience, strength, and trust.
Despite a punishing chemo regimen, his side effects have been relatively minimal. Fatigue has been significant, but he is good at taking the time he needs, and his caregivers at his home, and our family, all make sure Alex has the opportunity to rest when he needs it. (Ironically, the one time he resists rest is during chemo. He cannot let himself give in to sleep. He fights sleep every step of the way.)
His appetite and weight have held steady. His attitude has been positive. We've felt "lucky."
In the last month or so, the anxiety has increased. You may wonder how we know he's more anxious, since he doesn't have the words to tell us. All I can say is that if you know Alex, you just know. There is a furrowed brow more often. He rocks to try and sooth himself. Although nonverbal, Alex is never silent. If you have lived with Alex, or gone to school with Alex, you know when he is nearby. He has a very distinctive way of vocalizing, and his moods are evident by the sounds he makes. When he's feeling good, it doesn't take a lot of rocking or sound to make things right. These days, there are a lot more of both.
It seems likely that some of the anxiety is biochemical in nature, as Alex's body continues to process the toxic chemicals that have been pumped into his system over the past six months. It also seems likely that he experiences sensory and cognitive side effects that may be unsettling to him; many cancer patients report changes in taste, sensation, and something called "chemo brain." And there's no way for us to know what part is emotional. Is he scared that he will die? I don't know. We talk through everything with him, imagining the parts of the conversation he might play, or the questions he might have.
August was a respite. No appointments, no treatments, no chemo. A chance to live life.
He had a PET scan at the end of August. Our third trip to the same hospital. There aren't a lot of "Alex's" coming through their doors for sedated PET scans for cancer. The staff all remembered and recognized us. We were excited and hopeful. This scan would prove that the chemo had worked. We were ready for our victory dance.
Last week we saw Alex's oncologist for the results of his PET. The doctor was running late, so we were in the waiting room for over an hour. He was in with a new consultation. Any time his oncologist is late, I tell myself to be grateful that we aren't the most needy patient on the list.
I could tell from his body language when he came in the door that the result was not what we wanted to hear. He called it a "mixed result." All of the cancer from the previous PET was smaller and inactive, but there was a new spot. He wasn't sure what it meant. The radiologist hadn't used the scale he wanted, the one they use specifically for Hodgkins, so he was frustrated. It would have to be re-read. But the spot was concerning. He wanted us to go back down to the specialist at the teaching hospital. "Try not to worry. He looks good."
We left, feeling deflated, trying to stay positive.
Our doctor called the lymphoma specialist. The specialist said we need to biopsy the spot right away. So they call the surgeon who did Alex's surgery last winter; the one where we found the cancer in the first place. But this was a Friday afternoon. Before a holiday weekend. So nothing got scheduled. Tuesday rolls around. Nothing. Today - Wednesday we get a call. They want to schedule surgery for next Thursday. A whole week away.
More waiting. But the surgeon needs to see the PET. There are over 40 lymph nodes in the part of the neck where he needs to operate. He can't go in blindly.
Now what? One step forward - all of the old cancer responded; and two steps back - a new spot. New cancer? What next?
I'm just trying to breath, in and out, in and out.
Alex's cancer journey has been remarkable for all of us. Like everyone's cancer journey, I suppose, more has been asked of our family than we ever thought possible. Alex has shown tremendous resilience, strength, and trust.
Despite a punishing chemo regimen, his side effects have been relatively minimal. Fatigue has been significant, but he is good at taking the time he needs, and his caregivers at his home, and our family, all make sure Alex has the opportunity to rest when he needs it. (Ironically, the one time he resists rest is during chemo. He cannot let himself give in to sleep. He fights sleep every step of the way.)
His appetite and weight have held steady. His attitude has been positive. We've felt "lucky."
In the last month or so, the anxiety has increased. You may wonder how we know he's more anxious, since he doesn't have the words to tell us. All I can say is that if you know Alex, you just know. There is a furrowed brow more often. He rocks to try and sooth himself. Although nonverbal, Alex is never silent. If you have lived with Alex, or gone to school with Alex, you know when he is nearby. He has a very distinctive way of vocalizing, and his moods are evident by the sounds he makes. When he's feeling good, it doesn't take a lot of rocking or sound to make things right. These days, there are a lot more of both.
It seems likely that some of the anxiety is biochemical in nature, as Alex's body continues to process the toxic chemicals that have been pumped into his system over the past six months. It also seems likely that he experiences sensory and cognitive side effects that may be unsettling to him; many cancer patients report changes in taste, sensation, and something called "chemo brain." And there's no way for us to know what part is emotional. Is he scared that he will die? I don't know. We talk through everything with him, imagining the parts of the conversation he might play, or the questions he might have.
August was a respite. No appointments, no treatments, no chemo. A chance to live life.
He had a PET scan at the end of August. Our third trip to the same hospital. There aren't a lot of "Alex's" coming through their doors for sedated PET scans for cancer. The staff all remembered and recognized us. We were excited and hopeful. This scan would prove that the chemo had worked. We were ready for our victory dance.
Last week we saw Alex's oncologist for the results of his PET. The doctor was running late, so we were in the waiting room for over an hour. He was in with a new consultation. Any time his oncologist is late, I tell myself to be grateful that we aren't the most needy patient on the list.
I could tell from his body language when he came in the door that the result was not what we wanted to hear. He called it a "mixed result." All of the cancer from the previous PET was smaller and inactive, but there was a new spot. He wasn't sure what it meant. The radiologist hadn't used the scale he wanted, the one they use specifically for Hodgkins, so he was frustrated. It would have to be re-read. But the spot was concerning. He wanted us to go back down to the specialist at the teaching hospital. "Try not to worry. He looks good."
We left, feeling deflated, trying to stay positive.
Our doctor called the lymphoma specialist. The specialist said we need to biopsy the spot right away. So they call the surgeon who did Alex's surgery last winter; the one where we found the cancer in the first place. But this was a Friday afternoon. Before a holiday weekend. So nothing got scheduled. Tuesday rolls around. Nothing. Today - Wednesday we get a call. They want to schedule surgery for next Thursday. A whole week away.
More waiting. But the surgeon needs to see the PET. There are over 40 lymph nodes in the part of the neck where he needs to operate. He can't go in blindly.
Now what? One step forward - all of the old cancer responded; and two steps back - a new spot. New cancer? What next?
I'm just trying to breath, in and out, in and out.
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