One pleasure which we did not account on was my sister Susan’s dogs. Maya and Susan became best of friends. They are both dog people. I will never understand that, but ok. Maya talked about the dogs all the way home and then some. Maya already made plans to visit the dogs in the near future, perhaps in December.
In the mean time, we had to make time. We had over 4000 KM to drive and only three days to do it. We really had to make time. Of course, making time when making time is needed is when accidents happen. Just outside Ellensburg (Washington?) we blew a tire. That was scarey! Bang! bang bang bang bang……. Initially, I had thought we hit something. Then, as the sound was related to our speed, I knew we blew a tire. Now what the hell are we going to do? We quickly pulled over and took a look. Again, there were transport trucks all over us and it seemed to me a bit of miracle to have made it to the shoulder. It wasn’t so bad. Yes we blew a tire and the blown tire chewed up the panel around the wheel. But, we were all ok and the inner tire was fine. Now, where do we go? We limped into Ellensburg and asked around. It was Monday evening around 5:30 PM when we blew the tire. It looked like we were stuck. I hoped it was an easy fix and hoped that we would be mobile if not tonight, by early morning the next day.
Luck would have it, we found a shop. Although they had already closed for the evening, they were willing to do the tire change. That was something else. I even tried to leave them a little tip and they would not have it. So, with the tire fixed, we were able to shave another 250 km from our journey. It was also difficult to pass by Yellowstone without stopping. We just didn’t have any time.
The hardest part of the trip was this: At this point, I knew something was very wrong. Although I wanted to believe that we were just dealing with a hiccup, in my heart I knew we were dealing with something serious. We were being called back. We were being called back!!! Alaska was out of the question. Haida Gwaii was but a dream now. But what could I do at this point? Indira was already back in Toronto, and while I wanted to share this with the woman who should know, and god knows it was brimming over inside of me, I could not. I didn’t have the heart to bring it up to Indira. I wanted to save her even just a few days of anguish. Taylor was riding shotgun for me, but I could not bring it up to Taylor either. So, I suffered in silence. There was simply nothing else to do but drive and brood over the possibilities that were unfolding in front of us. It seemed that each mile, I would wonder what the problem could be. What it would mean. My head was racing a thousand miles for every mile driven. Each mile seemed like an eternity. Are we dealing with leukemia? What does that mean? How will we deal with this? Is this it?
I don’t really know how I did it. It’s a blur; Walmart parking lots when too tired to drive, meals on the road, and even squeezed in an oil change in Walmart parking lot to get to Grand Rapids. I recall that the appointment was on Aug 16th, 2012 at 10 AM. We arrived in Grand Rapids at 3 AM that morning. Indira drove down to meet us there at the Ronal McDonald house. I fell into a troubled sleep out of sheer exhaustion for few hours before having to face what was to come. I was hoping…
Following day, our lives once again changed. When Dr. Sholler approached us with the devastating news, both Indira and I cried and cried. Dr Sholler also cried with us…
Four weeks prior, we started our journey with renewed hope that Maya was going to beat neuroblastoma. If you will, it was a new start. With DFMO therapy, we were very hopeful that may be, just may be we’d be back to some sense of normalcy. We would get our lives back, and chalk up the past three years as an ordeal of a pediatric cancer family. Just a bad nightmare. With one blood test, our hopes were crushed. What I recall then is that MDS/AML is very “difficult”. That is one way to put it. The only question at that point was whether MDS/AML was painful. Even in the midst of our anguish, the gravity of the situation was not lost. I did not want to lose Maya to neuroblastoma, which is … painful to say the least. Perhaps, losing her through MDS/AML is a blessing in disguise. A in AML stands for Acute. It can’t be more succint. The thought at that time was that we had few months.
And now, almost a year out from that fateful day, I wonder how we’ve made it another year. What does this all mean? For me, it seems that life is grizzly. It can be unfathomably difficult at times. I try to cope with meditation. And at times, it takes many hours a day just to stay afloat. Most of the time, I can deal with it. Yes, there are those who have it tougher. But that does not negate or diminish our suffering.
In one of my first blog I wrote that sadness had not soaked through the fabric of our lives. After three plus years, it has. It has soaked through and through. It is sad. And it’s grim. There are no bright shining smiles you see on commercials in reality. And if We (the cancer families) put on the brave face, it’s a fascade. Perhaps foremostly we are trying to fool ourselves.
We live frozen in time deathly afraid to do anything but to focus completely on Maya. At the same time, we are forced to do something, anything because the alternative is devastating. We live in fear. It’s doubly hard when children die from either neuroblastoma, or neuroblastoma and MDS, as was the case in the past couple of weeks.You all have asked us. “Don’t know how you guys do it. Can’t even imagine what it’s like” It’s been unbearably difficult for all of us. Each of us have tried to find some ways to deal with it; sometimes well, other times, not so well. There are cracks on top of cracks in our lives. When we are able, we somehow patch it and move one more step. This is the cancer world. We still have hope whatever the odds may be. For many, at some point, even hope dies… But this is how it is.
In the midst of this nightmare, you can only focus on the little miracles that present themselves. These little miracles provide you with just enough oxygen to carry on. Combing my daughter’s hair, oh what pleasure that is. Watching Youtube videos with Maya on my lap after the evening bath. Scratching her back because daddy is the only one who can do it right. The little pot belly Maya is developing. The way Maya always skips when she walks. Or seeing her in pink helmet riding with dad. These are the miracles from a little girl who is so broken. And her belly laugh…
And out of this madness,we somehow carry on. What else is there to do? Get up! At times, it takes herculean effort And squeeze in more life! Squeeze in more life… In the midst of the turmoil, the anguish, the anger and being lost, I try to hold on to what Viktor Frenkel, a holocaust survivor and a psychiatrist who wrote -again, sometimes well, and other times not so well – :
And there were always choices to make. Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom; which determined whether or not you would become the plaything of circumstance, renouncing freedom and dignity to become molded into the form of the typical inmate.
Seen from this point of view, the mental reactions of the inmates of a concentration camp must seem more to us than the mere expression of certain physical and sociological conditions. Even though conditions such as lack of sleep, insufficient food and various mental stresses may suggest that the inmates were bound to react in certain ways, in the final analysis it becomes clear that the sort of person the prisoner became was the result of an inner decision, and not the result of camp infleunces alone. Fundamentally, therefore, any man can, even under such circumstances, decide what shall become of him – mentally and spiritually. He may retain his human dignity even in a concentration camp. DOstoevski said once, “There is only one thing that I dread: not to be worthy of my sufferings”. These words frequently came to my mind after I became acquainted with those martyrs whose behavior in camp, whose suffering and death, bore witness to the fact that the last inner freedom can not be lost. It can be said that they were worthy of their sufferings; the way they bore their suffering was a genuine inner achievement. It is this spiritual freedom – which can not be taken away – that makes life meaningful and purposeful.