Monday, January 6, 2014

on my father's 5th yortzait

Another year has passed. Now my father missed meeting three of his grandchildren: two of mine and one of my sister's. He was supposed to be the involved grandparent, the one interested in spending time with his grand kids, tinkering around with them, asking them those goofy math problems that I always attempted to do and then brushed off. He was supposed to be the one who could get excited about things that excited me, or, at least, listen patiently. He was no angel, my father, but he was what a father was supposed to be: a kind man, a man who admitted his mistakes, someone who cared and someone who would do a lot of silly and hard things to show that he cared. He did not complain, and he did not demand. He was soft, somewhere in his core; but he was soft in just a way that I needed him to be.

He knew that life in Russia was not for likes of him. He liked the law-abiding society, instead of constant bribes and contact seeking. He wanted to stand on his own merit. He could have gone to Israel, have his life there, be a brainiac among brainiacs. He was not a goody-two-shoes, a perfect student, a teacher's pet. But he knew that whatever he needed to learn, he would master, and then have it at his fingertips to use. He was not stuck in past, nor fearful of the future.

My best years of relationship with him were during college years, when I was in the dorm in Manhattan and he was in Toronto, working, and living alone. I would get on the phone with him and share about my day, and the classes I was taking. I minored in math, and there were many different subjects. No matter which class I was in, I could tell him the current topic and he could help me with the problem sets. He knew his stuff. I am scared whether I still have enough math base to take my kids through middle school. But, more importantly than actual knowledge of the subject, he was there to listen to me.

I ended up with an emergency surgery while in college. He hopped on a bus and came over. He paced with me in the hospital, made jokes, and then told me of my loopy, morphine-drenched answers which I forgot. He knew it will make a good story one day, and I still smile when I think of the whole situation. He sat in the lobby of my dorm, taking apart and reassembling my computer, improving it. One of the guards came to investigate, and we were laughing: oh, he thought we were constructing a bomb! (This was before 9/11, so it was funny). When he met my future husband, he took right away to calling him by his Hebrew name, instead of his Russian one, just as he was introduced. My guy liked it tremendously, and so did I.

My oldest with my father
If it wasn't for awful Hep C... how different everything could have been! There are years and years worth of conversations: to treat, not to treat, too late to treat, no options, liver transplant, who will be the donor, whose responsibility to find the donor, go to China, they are a dime a dozen, so who cares if it's a little fishy, come on, it's your father! I wished in those years that I could problem solve and just do it myself, be the donor. But I could not, having the same virus. I was also watching with horror, as my father's condition deteriorated: this is going to be me, in twenty to thirty years. These issues are going to be my issues.

All the crazy things I did at that time: prowling chatrooms and message boards, talking online to random strangers who were interested in offering pieces of their livers, for a good price, of course. Talking to some crazy missionaries in Africa, who were part of this organ donor movement. Posting on all sorts of lists, sending out e-mails, asking and searching: are you the right blood type? Could you do a mitzvah? Would you consider davening for my father? Would you help out financially? Calling bikur cholim in Toronto, asking them to visit and to assist with rides, and being told that it is hard to find a male who can do a visit. Then convincing my non-observant parents that a visit from a total stranger would be good for them. We are still waiting for that visitor...

In all this craziness, it was me who figured out that my mother, being a type O, was a universal donor and could serve as a liver donor to my father. Meanwhile, I got my news that my liver was starting to get affected by Hep C. Same Hep C, same strain. My father saved my life. The family lore goes like this: when I was born two months' premature, the hospital did not exactly have a survival plan for such babies. So my parents were advised to take me home, heat the room as an incubator, and just try their best. I landed in the hospital at the tender age of 18 days. Somebody called for a blood transfusion. My father had the same blood type. They quickly reeled him in, bled him, and poured it into me. Blood, the elixir of life. Walking on knife's edge, it is also the toxic brew of whichever viruses happened to be there. Hep C was in that blood. Hep C was not discovered till later, and screening for it did not commence till even later than that. With that gift of life, I got a much more sinister gift. If there will be a vaccine for Hep C, I would take it in a heartbeat.

I started Hep C treatment as soon as my second son was weaned. I was determined to give it a good shot, because I would not make my kids go through what I was going through with my father. Considering my virus's genotype, I was told that 48 week treatment of Peg Intron plus ribavirin had a 50% chance of succeeding. The treatment is being described as having chemo, for 11 months, and without the sympathy reserved to cancer patients. The side effects were brutal: I lost 10 pounds in a few weeks. All you diet people, get some ribavirin and pound yourself into skinniness. You will look slim. You will also have no energy and constant nausea. You will also spend a chuck of your day laying on a couch, too tired to move. My blood counts plummeted, so I had to inject myself with more meds. I do not mutilate myself, and I hated the pain that came with each shot, and the new wave of sickness. Brain fog, loss of mental acuity (to me, a PhD candidate, former math minor, thinking "I will always have my smarts", literally losing my mind was cruelly painful). Insomnia requiring Ambien. Severe depression hit, so severe, that I had to be on medication and in therapy. All this for a 50% chance to beat the beast. I fretted whether my kids will remember me as the mommy who just laid on the couch for a year. They did not, but my second boy  spent a lot of time cuddling with me.

post first transplant
Two months into my treatment, my parents went for the transplant. I came for Rosh HaShana, three weeks later. My mother was home already, my father was supposed to be home, but something came up, and he was not released. I snuck my boys into the hospital lounge, so he could see them. I wore a mask since I was sniffling, and I did not want him to catch my cold. We paced the ward's floor, talking about treatments and quality of life. He was concerned about his friend with cancer. He did not look good, but he was optimistic, making plans.

That first liver, my mother's liver, was rejected by his body. He needed a second transplant, this time cadaveric. I flew in a few months later to visit. I found him in hospital bed, reading about Windows Vista, which just came out. I went to the gift shop and bought a chess/checkers set. I knew better than to play chess against him, so we settled on checkers. He beat me. I accompanied him to the exercise room. He surprised the nurse by asking for a slightly heavier load, to keep in shape. He somehow radiated this simple calm.

Around the time that I finally got word that my killer treatment is working, and all this sledgehammering that I am doing to my body and brain is not in vain, he deteriorated badly. One winter day, I got a frantic call from my sister: come now, this is it, his blood pressure crashed, they can't stabilize him. We threw kids in the car and went. I was still waiting on my citizenship, so I was not even sure whether Canada will let me in, without the proper papers, whether we will get turned around at the border. We made it, and I went up. They stabilized him in ICU, but he was unconscious, intubated, there, and not there.

He pulled through. My husband had to fly out the same night (they do not like to give residents emergency time off). I drove back with the kids a few days later, with my sister in tow. At the end of the month, my father got the second transplant.

It sort of worked. He became conscious, he started moving, started talking and walking. I flew in again, just for a day. (It was hard to place the kids; were it not for all my good New York friends, I would not have been able to go at all). I also managed to mix up my antidepressant with Ambien during that week, so I literally sleepwalked. I remember just bits and pieces: not enough time together, not enough privacy, getting him a hot chocolate from Tim Horton's, watching him struggle to stand up and walk with a walker. What I do remember clearly is him making plans to come and visit me in New York. He was aware of his condition, he knew full well what is going on. But he also knew what he had to do, and this was part of his duty, desire, and no darn freaking transplant or inability to stand unassisted was going to get in the way.

The last time I saw him was Thanksgiving. I finished my treatment and two weeks later we moved to Houston. The summer was busy with setting up a new life in a new place. I was offered a job on the spot to teach science, and my kids went to school just for the hours I was teaching. Meanwhile, this second transplant was not it, either. The virus reinfected the new liver, and there was nothing else to do. My father did come home. When I booked Thanksgiving tickets, it was not a nice visit with the family, it was a good bye. I knew it. I was bringing my kids, in vain hope that they would remember what their grandfather looked like. I made the most out of that visit: let's go out to eat! Let's go to the mall! Let's make a big shabbos meal! No cheer could pierce the new cloak of despair. When I saw that look of resignation on my father's face, I knew that he gave up.

Thanksgiving visit
Darn Hepatitis! It won! I beat my dragon,but my father lost his battle to his. He pulled through just at a year's mark, technically making his second transplant a statistical success. And my father loved those little technicalities.

When he passed away, it came as a shock to people in Houston. They did not know him, they did not know of him, and they did not know of my treatment. I felt like someone making an impolite mess, and apologizing profusely. Sitting shivah, visitors filing in, not knowing what to say. The usual questions: was it sudden? Was he sick? Oh, for how long? Do you have any family? Oh, a sister. Is she single? Well, this is not the time, but, afterward, please contact me, I might have someone for her...

The bottom fell out, Months passed and I did not notice. I got up, took care of the kids, taught, and yet I cannot recall a single moment of huge chunks of time. It was not intense grief, more just fog. I had distinct feelings that first year, moments, when I looked at the world through his eyes, not mine. Sobbing over a song from a record that he brought home many years ago. Feeling emptiness. Intense regret that my children will nor remember him, will not know him. Looking for signs of him in my kids. Saying kaddish when I made it to shul, and being upset when nobody on men's side would lead in mourner's kaddish, so the congregation skipped it.

It's been five years. We moved, yet again. My daughter can identify my father from the picture on our mantle. My baby is named after him. The older boys do not talk about him, as 9 yo told me that it is too sad. For a while, he was worried that he could also have that bad virus and die. I do not push. I am virus-free, and officially cured. But for the rest of my life I cannot be a blood donor. I am slowly starting to make plans to live past sixty, the age of my father's death. And I am planning to hold my kids, tell them I love them and I am proud of them, and let them go.

1 comment:

  1. I have such fond memories of your father. He lives on in his daughters and grandchildren.