Tuesday, September 13, 2011

Race for the Cure

This Sunday, I will be walking with my family and friends in the NYC Race for the Cure, which supports breast cancer awareness and research. We will be walking in memory of Aviva's mother, Hindy, who passed away from breast cancer 9 years ago. My sister-in-law, Tova, who runs the team and is so dedicated to the cause wrote about her mother and what the race means to her as part of her outreach. I wanted to share with you her beautiful words and hope they mean as much to you as they meant to me.

Hindy's Helpers was founded in memory of my mother, Hindy Weinstock, who died from breast cancer 9 years ago. My mother was a speech pathologist who worked in a very poor neighborhood in the Bronx. She loved to devote time to volunteering in her community, helping her young patients and doing anything to make her husband and three children happy. She did all this with a smile on her face and was known for her laugh and amazing sense of humor. Like so many other women, her life was cut short at the age of 48 when her battle against breast cancer ended. Although she fought the cancer twice, the second time for over a year, she wasn't able to conquer it. It's hard to share my story about losing my mother at such a young age, but it's also a comforting way to keep her memory alive.
When I was in fourth grade, my mother was diagnosed with breast cancer for the first time. I was pretty much kept in the dark for those few months and only have memories of words like "tumor," "radiation," and "chemotherapy." Those months are a blur of mysterious visits to the doctor and an understanding that "mommy was sick" covered in confusion about what exactly was wrong. I was introduced to the fact that parents aren't immortal beings who will always be there to take care of their children. Thankfully, she was able to chase away the cancer and went into remission.

But the remission only lasted so long and when I was in eighth grade, my mother battled with breast cancer for a second time, and this time it would take her life. Again, "chemotherapy," "radiation," and "tumor" were common words. Only this time, they had more significance. I understood the severity of these terms and for over a year, I watched my mother slowly be taken over by the cancer that spread from her breasts, to her lungs, and eventually her brain. This time, "chemotherapy" was replaced with "three months left to live," "there's nothing more to do," and "let's let nature take it's course from here." Although I had hope for a miracle, the passing of time made it clear that no miracle was coming and there was an inevitable end in sight. Dreadful. However, throughout the hardships, my mother always approached the struggles with a smile and positive attitude. It was that attitude and strength that pulled her through the initial months of chemo and steady decline. Her strong will to fight gave her the ability to push through and live longer than any doctor imagined was possible.

Towards the end of her life, my siblings, Yosef and Aviva, and I spent a lot of time cuddling up in bed with my mother to keep her company. Since the cancer eventually attacked her brain, it became harder and harder for her to speak, write and understand. But we would lay with her and tell her stories to remind her about past family vacations, special events we had all shared together, and the students that she was so devoted to and their progress. Even when she was exhausted from medicines and treatments, she would muster up the strength to give us a smile and kiss. The summer my mother died was incredibly difficult especially since all of my friends had gone to camp and I had decided that I would stay home. It was clear that her days were limited and I wanted to be able to spend every moment with her. Our home felt like Grand Central Station with visitors coming in and out all day long. Everyone wanted to accompany my mother in her last days. Nobody was ready to let go. My sister, her boyfriend (now husband) and I spent almost every evening bowling. It was a fun way for us get out of the house for a while and enjoy ourselves. One evening, before we left, we asked my mother how many strikes she wanted us to get that day. Since she was so heavily drugged at the time and formulating answers was hard in general, it was very hard for her to answer the question. But we kept insisting, "mommy, how many strikes should we try to get tonight?" Finally, we heard her say "eight." It took all of her ability to speak and come up with an answer, but she was able to do it for us, her children. I'll never forget these memories and my mother's last smiles and I will always feel so inspired by her strength and bravery. It took a few years before I, the team captain of Hindy's Helpers, felt ready to make a team in my mother's memory. Each year is still very hard, but racing as a team for her brings me so much joy and I know she's happy to see her "helpers" picking up where she left off and can no longer be. We have been working hard to raise money for the Komen Foundation and can't wait to deck out in pink this year!

Hindy's Helpers is usually made up of my close friends and my mother's friends who all knew Hindy very well and are so proud to be racing in her honor. Last year, we were joined by my twin niece and nephew who were born a few months before the race. I made sure to deck them out in appropriate attire and Em, a friend and teammate, helped me hand make pink shirts for them. My niece, Hindy (named after my mother) wore a "Stroll for the cure" shirt. Oscar, my nephew, wore a shirt proclaiming "I'm here for the boobies." Although they won't grow up knowing their grandmother, they will learn about the amazing traits she had and her devotion to society and those she loved. This year, I feel so touched that people who never even met my mother have signed up for the team. We currently have more team members than we have ever had and the number keeps growing! Team members are coming in from Connecticut, New Jersey and Philadelphia to join Hindy's Helpers. It will make me so proud to see the team all together on race day surrounded by others who have fought breast cancer, lost someone they loved, or just support the cause. Every year, the race excites me and is very emotional for me. But I know that my mother is so proud of us and with our effort, hopefully no more mothers, sisters, daughters, or friends will be lost because of breast cancer. Go Hindy's Helpers!

If you would like to support me, Tova, or anyone on Hindy's Helpers please visit our site at http://bit.ly/plKMTg

Thursday, April 28, 2011

A Family Matter

Sickness travels around in our house with the precision of a train route. It starts with one of the kids (almost always Oscar) passing it along to the other one. When they are just about to get better, Aviva picks it up next. Even though Aviva has seen every single communicable disease around, from tuberculosis to shingles to bed bugs, she somehow always succumbs to our kids' little colds. Finally, it gets passed to me who either has a cold for the rest of the winter or keeps it just long enough to pass it along and start the whole process again.

Thankfully, though, my kids have not had any real issues in their short little lives. They have been extremely healthy save for some colds and stomach viruses here and there. But I worry about them. It could just be the reality of parenthood. But I know a lot of it has to do with my genes. Both Crohn's Disease and Colitis have a strong genetic link. The diseases are predominantly seen in Jews of European descent and having a family member with the disease significantly increases your risk. And so the babies will be screened a lot more than the general population, but I'm not really scared of that. I'm not even really nervous about them getting the disease. In twenty years, hopefully they will have a cure in the first place and Crohn's Disease will just be a disease of the past like the Black Plague.

What I'm most nervous about is my kids being nervous. We're obviously a few years away before they notice my scar and start asking questions, but then what? Do I tell them and hope that they don't make the connection to their own frail bodies? Do I hide my health issues and hospital stays from them for as long as I can? I can face the fact of my own mortality, I just fear for them having to realize their fate is also tied into mine.

A few months ago, I had a routine colonoscopy. I have one every year checking for inflammation or any changes in my disease. I've been feeling really great but some of the tests and brushing they sent came back inconclusive for cancer. I also came back positive for Celiac Disease which is odd because I love pizza. The radiologist was almost positive that everything was fine (as was I) but they wanted to do a repeat colonoscopy just to be safe. I wasn't worried, I took the test and I'm sure everything will be fine. But when my kids hear the word cancer, will they assume the worse? Do I hide my procedures, blood tests, and appointments from them or give them full access.

Aviva often says that she wishes she had more of a role during her mother's sickness. She was only 16 when her mother was sick and there really wasn't much she could do. But looking back on it, for her, helplessness equated with inaction. I'm not sure what she would think now as the parent. Our kids are really too young to even think about that. But there will come a time when they'll ask me what that scar is on my chest and I'll have to look in their eyes and tell them. What I'll tell them is anyone's guess.

Monday, February 28, 2011

The Easy Way Out

It has been around two months since I started my current psychiatric medicine and I do feel a little better. I feel more energized and slightly more in tuned to everything around me. But there is a nagging feeling that not everything is ok and maybe that’s just normal. I don’t think so, though. In fact, part of this feeling I’m having is from wanting to be sick again. Don’t get me wrong, I never want to have a transplant or go through the body-breaking experience of PSC again. But there is something scintillating with the sick lifestyle. Everyone is your advocate, they all deeply care about your health and feelings, and will do almost anything to help you. You are also infallible to some. You can use your disease as an excuse to get away with not doing your work, sleeping late, and taking it easy. Like a child, dog, or pregnant woman, a sick person knows exactly how to get what they want.

When I have blood taken or see the doctor, I secretly want something to be wrong. I even wouldn’t mind being admitted to the hospital. For years, part of my life was defined by my sickness. It was indelibly part of me even if I didn’t want it to be back then. People treated me like I was sick and I acted accordingly. When I became healthy in one fell swoop, every one’s perception of me suddenly changed. I was now either “lucky” or “blessed” or “healthy”. And I am those things but for me it is harder to give up being “sick” also.

It’s a scary thought to say out loud, but its almost a fear of growing up. For years, my main concern was staying healthy. It was everyone else’s concern for me as well. And now that I’ve reached that stage, a whole new world has opened up for me. Perhaps I’m just too scared to break through and deal with the responsibilities, consequences, and issues of being healthy. And so I want to get sick, not because its any better, but because it’s a lot easier.

Wednesday, February 9, 2011

Finding A Great Doctor

I look froward to going to the doctor. I know that sounds weird. Many of you probably hate the pricking and prodding that comes along with the exam, finding out if you have high cholesterol, low cholesterol or need to exercise more. True, I don’t particularly enjoy that part either. No one wants to know how fragile they are. But that doesn’t deter me from enjoying my doctor visit. And the main reason why I like the appointment so much is that my doctors know me and what I’m going through more than most of my friends and family.

A lot of times, people ask me for doctor recommendations. I have a slew of specialists I see and people presume that they are top-notch doctors, which they all are. But that doesn’t mean they are the right doctor for you. Just because I have a great relationship with my GI, doesn’t mean that your gonna like his practicing skills or demeanor. Perhaps the most important aspect of finding a doctor - and the point that I’m hopefully trying to make - is finding the right doctor for you.

I often talk about having “Great Doctors”. Well, what exactly is a great doctor? Is it their Harvard degree? Is it the hospital they practice in? Is it their clientele? And more often than not, is it how busy they are? Sometimes a great doctor can be all of these things but they definitely are not a prerequisite for a superb caretaker. Neither is being named “Top Doctors of NY”. The true way to tell if someone is a great doctor is how they talk to you and how comfortable you feel with them.

One of our first observations as a patient is in the waiting room before we even see the doctor. Doctors are extremely busy and a million unexpected things come up daily and so I don’t fault them when I wait two hours. Some awareness to why I’m being held is always nice. But more importantly, when I do finally enter that exam room, I expect the doctor to forget about all of those other issues and unexpected circumstances and deal with me. I don’t want to feel rushed. In fact, I want to feel like the only patient he or she is seeing today. I want all my questions asked. And above all, I don’t want him to be using his blackberry or typing on the computer (even if its notes on me) while I’m talking. My favorite doctor is my GI and its because when he comes into the room, the first thing he does is shake my hand. Simple acts like that humanize medicine in such a profound way that the doctor soon becomes just as important as the care.

Now not all doctors need to be great. I have a great hepatologist and GI because I require them. I need someone I can talk to openly and who understands the many issues those diseases play in my life, both medically, physically, and emotionally. But I don’t have a great Hematologist, a great Primary Physician, or a great Dermatologist. Finding a great doctor, someone you feel totally comfortable with, takes time and energy. And I don’t want to spend the time looking for a great dermatologist. It just doesn’t matter to me that much. Sometimes we know what we want in a doctor (sex, age, title) and that helps us make these great connections. I personally always want a young doctor, someone I can see a lot of energy in. But if you don’t know what you are looking for, the best way to find out is trial and error. Go see a doctor someone recommends or your insurance will cover and see what you like about them. Most of the time, you’ll know right away if this is a great doctor for you. Because there is a big difference between being just great and being great enough for you.

Sunday, January 30, 2011

Transplant Living

I sit here at night lost. I am coked up on tylenol with codeine even though I am not in pain. I am just depressed. I don’t know how or why this happened. Somewhere in the last few months I lost my way, felt myself cracking and did nothing to stop myself from falling further. I masked my moods with pain killers, restless nights, and unproductive days. I know I’m supposed to be happy. I’m healthy, I have two beautiful kids, and a wonderful wife. It makes me feel worse that I feel this way when I have such a wonderful life on the outside.

I also know its not my fault that this is happening. I know that this is hormones making me sad for the first time in my life. But that is no consolation. Last year was such an emotional roller coaster and somehow I ended up stranded upside down without my seat-belt harnessed. In a few short months I went from being jaundiced and diseased to a healthy father of two. By the time my mind caught up with my emotions, it was too late. In some sense, I blame the sudden transformation on my current condition. I never had time to even get used to transplanted life as we had babies only three months post-upgrade. I was on new medicines, barely getting any sleep, and working full-time. Life was in hyper-drive for so long that as it slowed down, I didn’t know how to cope. I became lost. And that is where I remain tonight.

This post is harder for me to write than anything I’ve shared before. Depression has a certain stigma to it that scares us all. By writing this, I in no way want to talk to you about this. I will certainly regret this when I hear from parents, friends, and others. But at the same time, I want you to understand what I am going through, why I haven’t posted, and what post-transplant life is truly like.

In the last few months, I’ve been trying to get help from the transplant psychiatrist. Nothing has changed yet but hopefully things will start to get slowly better.