I am a cancer dad. Didn’t choose to be one, but I am. On this side of the blog fence, I give insights into what is going on in our world, most often pertaining to my beautiful daughter. And indirectly, it is a point of view of a cancer dad. In this post I thought I would put more of an emphasis on me and what it’s like to be a cancer dad.
So, what is going on? Here is a brief look.
As you can all imagine, finding out that Maya had cancer was a devastating news. It was a proverbial baseball bat to the head. Both Indira and I were stunned. We didn’t know what to do. And inevitably we put on the “stiff upper lip” and put on the romantic air of fighting this dreadful disease. If you have been following our blog, you know the gamut of emotions that we were dealing with. If we were to play a simple word association game, I suspect I would say something like this:
There is a huge amount of frustration in dealing with the “machine”. Simply put, We (medicine) don’t know what to do about cancer. Why do I say that? Simple. People die of Cancer. As a friend said, part of the frustration comes because there is a descrepancy between what is expected and what we are getting. The reason for this descrepancy is ignorance and commercials. That is to say, most people (including us and the oncologists) don’t know how to effectively treat cancer. A lot of people die and the mortality rate will increase over the next 10 years (WHO). Secondly, the commercials lead us to believe that everything possible is being done in battling cancer. What a crock of shit!!!
Our oncologist is a very learned person. And I don’t doubt that she is doing the best she can. Except, her best and hence the oncology world in general isn’t good enough. Not by a long shot.
As an engineer, it has been particularly challenging to deal with pediatric cancer. The architypal caveman in me can’t understand how to deal with this invisible enemy. There is a strong urge to somehow solve this problem. Must kill, and bring food for the family. Must protect… but all fails. More over, as an engineer who has been trained to ask “Why”, it is particularly frustrating:
- Why do you give the same therapy when you say each child is different?
- Why do you not do personalized therapy?
- Why isn’t there a better solution?
- Don’t you have better models? Mice aren’t children…
- Why does it take so long to get a drug into trial?
- Why are these kids dying?????
The list goes on and on. Then, inevitably someone says,”Oh it’s so much better than, twenty years ago”. Twenty years ago, internet was just begining to take off. No one had cell phones and Windows 95 was the big thing. Remember that? Twenty years ago lap top looked like a carry on luggage. Twenty years later,we have an equivalent technology that we carry in our pockets. THAT is twenty years of progress. I am frustrated because there hasn’t been any considerable gain in medicine.
Initially, you are motivated. You search high and low for an alternative therapy, hoping that you’ll find something. May be I truely believed that there was an answer. I don’t anymore. And this is an important point: I don’t believe there is an answer outside the conventional therapy because, cancer is a heterogeneous disease. Cancer is like Flu. It’s not just one thing. And like the flu, it mutates. So, any alternative therapy must also in its approach must deal with this. If there is a therapy that had a positive result, it is only through luck and specific to that child.
The machine does not understand what it is to be on this side of the fence. I as a caveman, am failing. Nothing about this is easy.
When you can’t solve the problem, the subsequent emotion is anger. Anger is particularly harmful because it taints all of your faculties and your judgement. Perhaps anger helped when we were cavemen being hunted by a large animal. It’s not very practical with respect to cancer.
When Taylor was born, on his second day the hospital needed a blood sample for his blood typing. When they poked him, I almost decked the nurse. How could you hurt this little boy? Imagine then, what it is like for the nurses and doctors to continuously poke, prod, cut and hurt your child? The fact that they are trying to help is of little reprive. They are hurting your child. It does not get easier over time. Maya has so many little scars. It makes me angry, even though I can rationalize them. It is never easy to see your child being hurt even in light of the fact that it is to save her life.
The fact that there are no answer is also difficult to accept. The fact that we put Maya through hell has little meaning. It is not one of those things that you can grit your teeth and bare it. “If you go thorugh this painful process, you’ll be all better”. No. You could go through all the therapies and still expire. But, this is what it is.
As is the case, we inevitably watch children die. Some we know well, others are on the periphery. Watching children die is one of the most difficult things to deal with. The disease that your child has is the same disease that has taken friends away. You watch these beautiful children whither away knowing what’s ahead of them. All you can do is put on a brave face and try to provide some comfort to the parents. It’s a lie. But, what else can you do? “The child has earned his wings”. How I hate hearing that. Take those wings and shove it up your ass, I say. I have no use for them.
It is like having dodged a bullet in the game of russian roulete. All you can do is ever so selfishly hug your child just a bit harder and sigh a breath, knowing fully that the next bullet might be the one for your child. The horror!
How many nights have I, or has Indira cried in silence because,…? How many nights have we tossed and turned, unable to sleep? How many times have I turn into the computer monitors at work to hide my tears? Too many to count. Will we see Maya’s eighth birthday? Her nineth? Tenth? What will we say when Maya clues in? How do you answer your child when she asks “Daddy, why is this happening to me?”
It is a mad mad world we live in. And out of this chaos, all we can do is what we do now. And it is with some degree of hope that we live our lives. There is little else to do. So, I take trips with Maya and Taylor. Indira just returned from her trip with Maya. We are planning for another trip in december to the Galapagos.
Somehow, 3.5 years have passed since we’ve found out that Maya had cancer. It’s been a while. And we’re all weary of having *it* in our live.s But one can’t simply walk away from it, can you?
Every little ailments,every little aches, every little temperature spikes immediately sets our focus to cancer. Is this it? And of course we suspect the worst. Cancer is active. It’s metastasizing… What if there are activities? What if there are metastasis into the brain? What if…. Is it normal? Of course not. Is it extraordinary? Not at all. Pediatric cancer parents often times suffer from Post Tramatic Stress Syndrome. I guess we are too. And it’s not a surprise.
As we have, to our friends who are in trouble, we say things will get better. No one knows better than us that this is a lie. The truth of the matter is, you don’t recover from cancer. It’s not something that you heal from. The damage that’s incurred is life long and often does not show up immediately nor are they visible. For example, while Maya enjoys her soccer practice, she will not be a stellar athelete. Maya has 60% cardiac function due to chemo. What you do see is that Maya can not sustain a jog for more than a minute or two.
But that’s OK. Atheleticism does not encompass Maya’s entire life. And even with all that has happen to Maya, she is an unappologetic fighter. She will always make the most of her life. Because that is who she is. Maya has my respect for that.
These stressors keep me busy, more than I cared to admit. Now, we need to fit in life. It’s not easy. You know these useless trivia facts:
- You spend more than 1/3 of your day at work.
- Your relationship with your manager is the second most important relationship.
- blah de blah.
While I am thankful that our employer has been very understanding, work does bring on it’s own stressors. There’s little time for much outside cancer. Not much time for Indira nor is there enough time for Taylor. Time for Taylor is something that hits me hard. He understands. But a nail to the heart is a nail to the heart regardless.
Then, what about time for me? You sacrifice something when it is absolutely necessary. The analogy of putting on your air mask first in an airplane disaster is a good one here. You can’t look after others if you aren’t well. Of course, we don’t talk about the fact that the plane might be hurdling towards the ground.
Under these circumstances, it is not difficult to question things. Why is this happening? What have I done? Did I do something ever so evil to deserve this? What lessons shall I glean from these experiences? I will simply take, “it happens”. To try to put any other rationale is an exercise in madness.
We stumble through this fog called pediatric cancer. It’s just the luck of the draw for the majority of families that are found in this fog. Yes, the machine is there to provide support. But the end analysis is this: They don’t know why some kids live and why other kids die. It’s almost indepent to what kinds of care you might get.
And for me, if there is anything that is clear, it is this: My job is to help Maya through whatever she needs to go through. If that means tough love, that’s what it is. If that means helping her bare down, that’s what it is. I am her strength. Indira is her warm and safe place. Somewhere in this mess, along with the tears, are also laughter of a little girl who is very much alive with life and spirit. And in the days where nothing seems right, we must constantly remind ourselves that the tickling sound in our ears is the proof that we are doing something right.