Resiliency. Growth Mindset. Grit. Attribution Theory.
There are a lot of names or buzz words that represent similar ideas. At school this year, we're all talking a lot about the idea of "Growth Mindset." Fifteen years ago, we were talking about "Attribution Theory."
The idea is is that individuals who are successful believe that they can learn and change and grow. They believe that with practice they can be successful.
I think this idea applies to our current situation. Alex's cancer is certainly testing us in ways we've never been tested before. We do our best to remain positive and face each challenge head on. That doesn't mean it's easy. Prior to this, our medical knowledge was minimal. It's also safe to say that neither John nor I went into medical fields for good reason. This is not where our interests or aptitude lie. But here we are. We've learned a lot in the past ten months, and our accelerated cancer course is not finished yet.
We appreciate the support of friends and family. Honestly, though, we're a bit puzzled by the continuous compliments. It's not false modesty. We don't see any other option. When Alex's new PICC was installed last week, the medical team in the cath lab was incredibly complementary about what great parents we are. That was nice (I half expected them to give us a sticker or a lollipop or something), but puzzling. Afterward, I whispered to John, "the bar must not be very high."
The thing is, when a doctor looks at you and says, "you need to do X,Y,Z or your child will die," you suck it up and do X, Y, Z.
Alex needs us to be strong. We have to be his voice and advocate for him. We have to ask the questions he cannot ask. We have to hold his hand when he's scared. We have to do whatever he needs, and we have to make our best guess as to what that is since he can't tell us.
That doesn't mean it's easy. That doesn't mean we're not scared beyond words.
Right now, I have the luxury of not working and focusing on Alex's treatment. John is still balancing work as well as Alex's cancer. If he could, he'd be there for Alex full time as well. But the bills still need to be paid and we need at least one income. If I were the higher wage earner of the two of us, he'd be home full time instead of me.
We don't like watching Alex have a PICC line installed, or getting put under for a PET scan, or holding his hands so he doesn't pull the drain out of his neck after surgery. We don't like sleeping on a hard chair in a hospital room with a stranger watching over us. But Alex needs us.
We don't always get it right. Most mornings are hard to get out of bed. I fall asleep by 8:00 most nights that we're home. I feel tired in my bones a lot of the time.
Last week when Alex was in the hospital I could hold it all together.
This week, there's a short break. Alex is at his group home. He's doing okay. We're getting ready for tests next week. Yesterday afternoon, I had a meltdown. I certainly didn't plan it. I felt helpless to stop it. Jessica held me and told me it was okay to cry. I couldn't let myself do it. I was afraid if I really let myself cry, I wouldn't stop. John was worried about me, so he came home early from work. I ended up just going to bed in the middle of the afternoon. Today was better, but I didn't accomplish anything.
But that's the end of my window to fall apart. Tomorrow Alex has a blood draw. I have things to do to get ready to go to Milwaukee. In a few days we go to the hospital for tests. A few days after that we start the process for harvesting his bone marrow. I know that we have to be even stronger than we've been so far.
We appreciate the compliments, but we really don't see any other way. Turns out, my magic wand to cure his cancer is on the fritz. This is all we've got. Put one foot in front of the other, day by day, minute by minute. This just sucks. But I can't focus on that. Instead, I choose to focus on the positive. I see Alex's smile. I know that John is my rock, and I know that I have to be that for him. Jess is here. Rusty is here.
Time to take a deep breath. We got this. That doesn't mean it's easy, but it is what we have to do.
Tuesday, November 17, 2015
Friday, October 23, 2015
Midnight Musings from the Cancer Ward
These are the things I think about when I'm trying to fall asleep in Alex's hospital room:
1. Alex (and our family) has built so much capacity in the past few months.
Alex now knows how to get to the bathroom while hooked up to an IV. He can eat meals sitting in a hospital bed. He tolerates being poked and prodded throughout the day (and sometimes the night). I'm learning to sleep in a room where a stranger is watching over him all night (to make sure he doesn't rip out any lines).
2. It doesn't matter how old your child is; when they cry, you cry (even if it's only on the inside because you can't let them see you cry).
Alex's autism includes a major anxiety disorder. Panic attacks can manifest themselves in various ways. For Alex, one type of anxiety attack is a sudden onset of weeping. It is the saddest thing you ever want to see. The chin quivers. The eyes well up. Big, wet tears slide down his cheeks. He hates crying, so he wipes and cries even more. He had two such episodes last night while he was waiting through a delay in his chemo meds. They gave him some medication to help him through it, and he finally fell asleep. I just wanted to burst into tears myself, but I had to hold it together. On the inside, I was a mess.
3. Hospital time is a dimension all its own.
Day three of this hospital stay, and we're still trying to get his home medication schedule worked out. His times don't match hospital "default" times, so he has yet to get his normal daily medication on time. I have all his "home meds" in the room with me, bubble packed and verified by the hospital pharmacist, but I can't give him those. I have given his medication schedule to the pharmacy tech and every nurse, but it still doesn't match in the system.
Also, every chemo med has been delivered late from the hospital pharmacy. Consequently, instead of being released Friday afternoon, we won't get out until Saturday morning. This hospital stay and chemo has been scheduled for three weeks.
4. Cancer sucks, but cancer treatment is fascinating and filled with amazing people.
My family's medical knowledge coming into this phase of our lives was quite limited. None of us chose medical fields for very good reason; this is not our area of strength. That being said, we have learned, and are learning so much. It is all fascinating. I feel like an expert at autism, but Alex has always been physically healthy. Now we have to learn his illness, his treatment, and how to make it work with his autism. Occasionally we meet a professional who is slow to catch on to what we need, but that has been few and far between. Our medical care has been fantastic.
5. Can really does affect the whole family.
Forgive us when we say "we" for everything. Jessica texted me something the other day and it said "in case we aren't released from the hospital yet." It isn't really conscious. And I know full well what Alex is enduring if far more difficult than we can imagine. But it is "we." Our family has cancer. Our life revolves around when "we" have treatments.
6. Every single day I wish I could trade places with him.
I so wish I could trade places with him. I'm sitting at his bedside, grateful that he's asleep. It isn't fair that he has to endure this on top of all the challenges he has already faced in his life. And yes, I know all too well that life isn't fair. But this just stinks. I also know that in order to trade places with Alex, I'd have to get past his father, his sister, and his aunt who all feel the same way.
1. Alex (and our family) has built so much capacity in the past few months.
Alex now knows how to get to the bathroom while hooked up to an IV. He can eat meals sitting in a hospital bed. He tolerates being poked and prodded throughout the day (and sometimes the night). I'm learning to sleep in a room where a stranger is watching over him all night (to make sure he doesn't rip out any lines).
2. It doesn't matter how old your child is; when they cry, you cry (even if it's only on the inside because you can't let them see you cry).
Alex's autism includes a major anxiety disorder. Panic attacks can manifest themselves in various ways. For Alex, one type of anxiety attack is a sudden onset of weeping. It is the saddest thing you ever want to see. The chin quivers. The eyes well up. Big, wet tears slide down his cheeks. He hates crying, so he wipes and cries even more. He had two such episodes last night while he was waiting through a delay in his chemo meds. They gave him some medication to help him through it, and he finally fell asleep. I just wanted to burst into tears myself, but I had to hold it together. On the inside, I was a mess.
3. Hospital time is a dimension all its own.
Day three of this hospital stay, and we're still trying to get his home medication schedule worked out. His times don't match hospital "default" times, so he has yet to get his normal daily medication on time. I have all his "home meds" in the room with me, bubble packed and verified by the hospital pharmacist, but I can't give him those. I have given his medication schedule to the pharmacy tech and every nurse, but it still doesn't match in the system.
Also, every chemo med has been delivered late from the hospital pharmacy. Consequently, instead of being released Friday afternoon, we won't get out until Saturday morning. This hospital stay and chemo has been scheduled for three weeks.
4. Cancer sucks, but cancer treatment is fascinating and filled with amazing people.
My family's medical knowledge coming into this phase of our lives was quite limited. None of us chose medical fields for very good reason; this is not our area of strength. That being said, we have learned, and are learning so much. It is all fascinating. I feel like an expert at autism, but Alex has always been physically healthy. Now we have to learn his illness, his treatment, and how to make it work with his autism. Occasionally we meet a professional who is slow to catch on to what we need, but that has been few and far between. Our medical care has been fantastic.
5. Can really does affect the whole family.
Forgive us when we say "we" for everything. Jessica texted me something the other day and it said "in case we aren't released from the hospital yet." It isn't really conscious. And I know full well what Alex is enduring if far more difficult than we can imagine. But it is "we." Our family has cancer. Our life revolves around when "we" have treatments.
6. Every single day I wish I could trade places with him.
I so wish I could trade places with him. I'm sitting at his bedside, grateful that he's asleep. It isn't fair that he has to endure this on top of all the challenges he has already faced in his life. And yes, I know all too well that life isn't fair. But this just stinks. I also know that in order to trade places with Alex, I'd have to get past his father, his sister, and his aunt who all feel the same way.
Thursday, October 1, 2015
In the Quiet of the Morning...
I hate waking up, but I love morning. My husband's eyes pop open at 3:30 am and he's ready for the day. My alarm goes off at 5 am and I grumble, but once I'm up, I'm ready to go. On the weekends, I'd like to "sleep in" until 6 am, but John and the dog always have other plans. I complain loudly, but when we take off for an early Saturday morning flight as the sun rises, I know that he's been right all along.
I arrive at school every day by 6:30 am; 6:15 if I can manage it. There are a handful of us there early every morning. It's quiet, there's no line at the copy machine, and I have almost an hour before the halls are really busy. I can get a lot done. I love that peaceful time to really get my thoughts into the day ahead. When those 21 faces greet me at 7:45, I'm ready to go.
Now, it's early morning in the hospital. I'm learning new early morning routines. Alex has been awakened several times to have his blood drawn, get weighed, take meds, go to the bathroom. He fell back asleep surprisingly fast each time.
I quietly washed up and dressed in the dim light while he slept. I asked the nurses to watch him while I went to the cafeteria for a quick breakfast (15 minutes, including the elevator ride, there and back; I've learned how to inhale food from years of parenting Alex) while he slept, nervous the whole time because these new people don't yet understand what it means to watch someone like Alex.
He lulls you into a false sense of security and when you let your guard down, things happen. Two weeks ago, after his surgery to remove a cancerous lymph node, he deftly removed the drain from the side of his neck. Then he immediately had to go to the bathroom. My husband and I were scrambling for the nurse call button, trying to unplug the IV pump, and get him to the bathroom "in time." Last night, he removed the needle that was supposed to be left inserted into his brand new chemo port in between treatments. It was bandaged up, but it still bugged him. Despite having me at his bedside, and being on video monitoring, he managed to pull the bandage off without removing his shirt. I pressed the call button, but the deed was way-done by the time she arrived. This morning, he removed the DermaBond that was over his incision for installing the port. I thought he was asleep and was sitting right next to him. He surreptitiously peeled it off, under his shirt, without me even knowing. *Sigh.*
We've learned a lot in the past nine months, but there's more to learn. There will be many more quiet mornings in the hospital. Three rounds of inpatient chemotherapy, followed by a stem cell transplant. It will be an opportunity for both learning and teaching, I think. I have more to learn about Alex's illness and treatment. And I have more to teach to help the nursing staff take care of Alex. I tell them he needs to be watched closely, and they say they understand, but then they walk away. When I call them back they say, "Boy, is he fast."
Autism and Cancer make things much more interesting. Being a nonverbal adult in a hospital setting has challenges as well. Being a nonverbal adult who is physically independent, and strong, and determined, and who understands what you say to and about him, is something most of the professionals don't seem quite ready for. If Alex wanted to, he could just get up, get in the elevator, and leave.
Caring for Alex requires "constant vigilance!" as Alastor Moody from Harry Potter would say. The next few months will be an interesting ride.
I arrive at school every day by 6:30 am; 6:15 if I can manage it. There are a handful of us there early every morning. It's quiet, there's no line at the copy machine, and I have almost an hour before the halls are really busy. I can get a lot done. I love that peaceful time to really get my thoughts into the day ahead. When those 21 faces greet me at 7:45, I'm ready to go.
Now, it's early morning in the hospital. I'm learning new early morning routines. Alex has been awakened several times to have his blood drawn, get weighed, take meds, go to the bathroom. He fell back asleep surprisingly fast each time.
I quietly washed up and dressed in the dim light while he slept. I asked the nurses to watch him while I went to the cafeteria for a quick breakfast (15 minutes, including the elevator ride, there and back; I've learned how to inhale food from years of parenting Alex) while he slept, nervous the whole time because these new people don't yet understand what it means to watch someone like Alex.
He lulls you into a false sense of security and when you let your guard down, things happen. Two weeks ago, after his surgery to remove a cancerous lymph node, he deftly removed the drain from the side of his neck. Then he immediately had to go to the bathroom. My husband and I were scrambling for the nurse call button, trying to unplug the IV pump, and get him to the bathroom "in time." Last night, he removed the needle that was supposed to be left inserted into his brand new chemo port in between treatments. It was bandaged up, but it still bugged him. Despite having me at his bedside, and being on video monitoring, he managed to pull the bandage off without removing his shirt. I pressed the call button, but the deed was way-done by the time she arrived. This morning, he removed the DermaBond that was over his incision for installing the port. I thought he was asleep and was sitting right next to him. He surreptitiously peeled it off, under his shirt, without me even knowing. *Sigh.*
We've learned a lot in the past nine months, but there's more to learn. There will be many more quiet mornings in the hospital. Three rounds of inpatient chemotherapy, followed by a stem cell transplant. It will be an opportunity for both learning and teaching, I think. I have more to learn about Alex's illness and treatment. And I have more to teach to help the nursing staff take care of Alex. I tell them he needs to be watched closely, and they say they understand, but then they walk away. When I call them back they say, "Boy, is he fast."
Autism and Cancer make things much more interesting. Being a nonverbal adult in a hospital setting has challenges as well. Being a nonverbal adult who is physically independent, and strong, and determined, and who understands what you say to and about him, is something most of the professionals don't seem quite ready for. If Alex wanted to, he could just get up, get in the elevator, and leave.
Caring for Alex requires "constant vigilance!" as Alastor Moody from Harry Potter would say. The next few months will be an interesting ride.
Friday, September 25, 2015
Now What?
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."
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."
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.
Wednesday, August 19, 2015
Now What....
prag·mat·ic
praɡˈmadik/
adjective
- dealing with things sensibly and realistically in a way that is based on practical rather than theoretical considerations."a pragmatic approach to politics"
synonyms: practical, matter-of-fact, sensible, down-to-earth, commonsensical,businesslike, having both/one's feet on the ground, hardheaded, no-nonsense; informalhard-nosed"she remains pragmatic in the most emotional circumstances"
Definition from Google.
Everyone seems to have a joke or a story for the "glass half full" vs "glass half empty" views of optimists vs. pessimists.
I really don't fit into either camp. I prefer to think of myself as a pragmatist.
Being pragmatic is how I've gotten through Alex's cancer. For me, being pragmatic means that in order to deal with something as terrifying and life altering as cancer, I need to focus on the bits (however few they may be) that are within my control.
Doctor's appointments, making sure Alex was eating, keeping everything clean and germ free, writing lesson plans for my sub, all of those things provided the illusion at least that I was doing something.
Now that chemo is done, I feel a bit adrift. I'm thrilled, don't get me wrong, but I'm back to feeling helpless. I'm trying to stay positive, but I'm not quite ready to say that Alex has "kicked cancer." Maybe I'm afraid I'll jinx something somehow. We're back to a waiting game. Waiting for the PET scan. Then waiting for results. And then just waiting for time to pass and prove to us that Alex's cancer won't come back.
Except I know I can't live my life waiting. I just have to live my life. And Alex has to live his. Knowing that cancer could come back, but also knowing that statistics for Hodgkins are extremely encouraging. And looking at Alex and knowing that he is so much stronger than he was in February. His energy is slowly returning. He was so sick by the time his cancer was diagnosed. I felt like every day and alarm was going off in my head. I knew that he was getting sicker by the day. But now I can almost see him gaining strength by the day.
Too often, I talk about when "life will settle down." John reminds me that life never really settles down, and if I keep waiting for that day, I'll miss my life. He's pragmatic, too. Life just is. It's messy. Sometimes it's harder than others.
And I know he's right. It's not like life was on hold during Alex's illness. Many things took a back seat, that's for sure, but there were still so many things to juggle.
We continued to work full time throughout his illness. Thankfully, we had amazingly supportive employers, business partners for John, and coworkers who helped pick up the slack when we needed it. We learned to say yes when help was offered.
We said good-bye to John's mom as her four year battle with Alzheimer's came to an end in April. Time was spent at her bedside in those last weeks of her life.
My own mom has not been well.
Jess got married, which was a joyous celebration for our family, but hectic in its own way.
And I know that in the days, weeks, and years ahead, life will continue to be messy. Sometimes filled with joy, sometimes heartache, and everything in between.
I'll just keep reminding myself to stop wishing and waiting for life to settle down, and to just embrace whatever life brings at the moment.
Friday, July 24, 2015
Trust
These three astronauts were beyond our physical reach. But not beyond the reach of human imagination, inventiveness, and a creed we all lived by: "Failure is not an option."
-Gene Kranz, Flight Director for Gemini, Mercury, and Apollo Missions;
p. 13 Failure is Not an Option
Listening to Gene Kranz speak about his experiences with Apollo 13 was riveting, to say the least. First of all, at age 82, he spoke for 50 minutes without a pause or a single "um." (He had one minor loss of train of thought that he chuckled at.) The detail in his speech was certainly impressive, and he is a wonderful story teller. We can all learn so much about perseverance and ingenuity from that experience. But one aspect of his speech struck me in particular: trust. Gene said that the success of that mission spoke volumes about trust. (I wish I could quote him directly, but I had nothing to take notes with at that moment.) He said that trust between the Apollo crew and everyone in mission control was key.
Trust. The idea of trust as a topic for my next blog post had already been rolling around in my head when Gene brought up the idea in his speech.
John and I comment frequently about Alex's level of trust throughout this cancer journey. As I reflect on the notion of trust, I realize it's an important aspect for all of us.
When Alex was first diagnosed with autism at age two, we set a goal. We didn't know what the future held (see my post, Crystal Ball), but we knew that we wanted Alex to understand that he was loved, and to be able to trust us. We weren't at all sure how to accomplish this, but this was our focus. There wasn't a clear road map, so we trusted our instincts.
We watch Alex at chemo now, and shake our heads in amazement. We would have never, ever believed that he could handle all of this. We didn't believe it six months ago. We surely wouldn't have believed it 20 years ago.
Anxiety is a huge component of autism. There is a popular saying, "If you know one person with autism, you know one person with autism." Everyone is impacted differently. I think it's safe to say that anxiety factors in for most people on the spectrum. When Alex was first diagnosed, that didn't seem to be a big factor for him. By the age of four, we knew better. By the age of six or seven, he was being medicated for anxiety. If you asked me today what parts of Alex's autism are the most difficult for him, I would say anxiety and communication. And, even though he is nonverbal, I would still list anxiety as a greater problem for him.
Functioning in the world is difficult for Alex. It takes medication, practice, and trust. We want Alex to be part of our family, part of the community, and part of the world in which he lives. I think that's what most people want for their children. It sounds pretty simple. It's not. Learning to get his hair cut at a salon (see Haircuts), eat in a restaurant, go to a movie, or go to the theatre, have taken years of practice.
Let's look at restaurants. Alex has a limited range of foods that he eats. That's also very common for people on the spectrum. In 1992, that was beginning to be understood, but there wasn't a lot written to help us figure out how to make this easier. Not unlike many families with young children, "eating out" usually meant eating a fast food meal in the car. We could go to McDonald's and Burger King. Chains work well because the menu and environment are the same no matter where you go. Gradually, we started going in to those restaurants and trying the play land. We hovered nearby, and more than once had to go in and rescue Alex when he got "stuck" (I mean that in a motor planning sense; if you have a child on the spectrum, you know what I mean). When Jess got old enough, she either led or followed him around, and she rescued him when needed. We had to watch his behaviors and listen to his vocalizations to try to predict when he was done before he became overstimulated and had a melt-down. When we were eating, we had to keep a close eye on him because he would "steal" french fries from other tables. (Think about it, as a parent, you let your child eat off your plate or share your food. When you have autism and don't understand language and social conventions, you have no idea that all the food around you isn't fair game. Some people were understanding; some were definitely not.)
Alex got good at fast food restaurants, but I'm always greedy. Once Alex meets a goal, I want more. The next level was Culver's and Fazoli's. You order food at the counter, but you have to wait until they bring the food to you. (Make no mistake, the wait time to dish up the spaghetti and walk it to the table was quite a stretch for Alex at first.) The quality of food was a step up as well, which was a welcome change.
As Alex approached middle school years, I started thinking about what we could do for activities in the community as a family. Eating in restaurants seemed like a reasonable goal. So we started trying restaurants where servers actually came to your table and take your order. There were hits and misses. Sometimes he would refuse to get out of the car. Other times, we got him inside, but the food we ordered looked or smelled too different and he would refuse to eat it.
We learned to look for restaurants with booths with extra high backs, and with minimal ambient noise. (My brother has a theory that they pump in extra "crowd" noise at Texas Roadhouse to make it seem like a party atmosphere; I don't know if that's true, but I do know that it is not an "Alex" restaurant.) We go early. Lunch at 11:00 and dinner at 4:00 means we avoid the crowds which means less noise and less waiting. We now have at least half a dozen restaurants that Alex likes.
Even though he is "good at restaurants" now, that doesn't mean he can always handle it. We have to be a able to "read" him on any given day, and try to see if he has enough emotional energy to enjoy himself. It isn't something he's able to do every day.
So I guess this is where the trust comes in. Over time, Alex has learned to trust us. I think he knows, I hope he knows, that we're always there to help him. We won't make him go into a restaurant that we think is overwhelming for him, or that doesn't have food he can eat. We'll nudge him in order to help him expand his world, but we'll always try to balance the two.
It makes me chuckle now to think about all the work that went in to all of these things, when now the thing we're dealing with is cancer. So many things I thought were a big deal, just aren't any more. I guess that's true for everyone who deals with a life threatening illness, or the death of a loved one. It helps you put things in perspective.
So now Alex has to trust us when he's in the biggest fight of his life. This is a guy who used to have a "resting" heart rate of 110 when waiting for a doctor's appointment. His face and neck would be flushed and he'd be having a full-blown panic attack. Alex's blood pressure was elevated last week, but that's the first time in all these months. He looks to us for strength and reassurance. He must trust us, and the doctors and nurses, to be able to do what he's been doing these last months. Anything to do with doctors, clinics, or hospitals are one of the biggest, if not the biggest, triggers of his anxiety and panic disorder, and he now goes to the doctor at least once a week and has had so many difficult procedures in the past seven months. It boggles my mind.
John and I have had to learn a few things about trust as well. We would much rather be the ones giving help and support and not be the ones asking for it. Jessica's first sentence was, "I can do it myself," and she came by that honestly. John and I are very independent and pride ourselves on being self sufficient. Letting Alex move out took a lot of trust. No one knows Alex like we do, and no one can care for him as well as we do. At the same time, we have been trying to expand his world for his whole life. We believe our job as parents is to raise our children to live independent lives. (In hind sight, that was a stupid idea. They believed us, and now we're alone. What the heck?) We believed that was still true for Alex. We have to trust that Alex's caregivers are keeping him safe, nurturing him, and giving him the life he deserves. We believe that Alex would find a way to let us know if this weren't true. Every time we pick him up, he is excited to see us; but every time we bring him back home to his house, he is happy to go. And Alex has grown in ways that he couldn't have if he were at home with us. He spends his days with young men his own age. He's done things and gone places we wouldn't have dared take him, and he's been successful.
Trusting the medical community was a big unknown at the start of this journey. Our concern was not for the medical knowledge, but in understanding Alex's disability. When Alex was small, we assumed that all medical people also understood autism. Turns out, that wasn't and still isn't true. We've learned to be explicit about what Alex can and cannot do. We've tried to figure out how to be assertive about his needs without being a total pain in the behind. We're generally pretty successful at convincing folks we won't get in their way, but doing their job will be much, much easier if they keep us around to support Alex. We ask a lot of questions. (A LOT of questions.) But we also try to balance that with the fact that we are not medical professionals, and this is not our area of expertise. They don't have time to bring us up to speed on 20 years of schooling and experience and still get his chemo started on time. At some point, we have to trust the answers they give us and go with it. That balance is hard to find. (And, to be fair, Alex's oncologist may tell you we haven't actually found it. So far, he smiles when he sees us, so I'm taking that as a sign we aren't a total pain in his tuckus.)
I used to worry that Alex wouldn't be able to trust us, or to really understand how much we love him. I don't worry now. I see it in his eyes at every appointment, and every visit. I see it in his strength, and I see it when he leans on us when he's scared. And Alex can lean on us, because we can lean on so many others. No one wants something bad to happen to themselves or a loved one, but when it does, you really learn who you can trust. I guess Alex isn't the only one who's learned that lesson.
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