Family

Coming Out of Hibernation

It’s been a while.

I know some of you must be wondering why I haven’t posted in awhile, and I do apologize for that. I have been healing from major surgery and finding my new normal.  They say God doesn’t give you more than you can handle … well, God must think I’m a real Bad Ass!!

sunheartIt’s been quite an uphill battle these last few months, and, as spring comes in, I am beginning to emerge from my hibernation. I will say that from the minute I started getting back on my feet, my friends and family have been so happy to see me. I am so fortunate. I show up at a girlfriend’s birthday party or a friends Bat Mitzvah and I’m greeted with such warmth. Maybe because I’m sick I notice everything more, but I look into my friends eyes and there is such genuine pleasure for me, that I am doing well and out and about. I know I have said this before, but I’m so blessed.

As I turn another year older — or, to be more precise, as I turn another year older surviving with cancer — I am grateful for the new year. Grateful that, despite all that the doctors have told me, I am able to celebrate another birthday. It’s funny because if anyone would have ever said I’d be happy to be 48, I would have thought they were high. So today I not only celebrate another year but I celebrate joining my family at the dinner table again. I celebrate attending my kids soccer games and volunteering at their schools. I treasure getting back outside and starting to walk again with the air on my face and my music blaring in my ears. I look forward to going to the movies and out to dinner with my husband. And I love shopping with my mom.

So just a little advice …  when your head hits your pillow tonight, dream of your children laughing, dream of a beautiful sunny day, dream of that perfect ice cream cone and dream of another day.

Living … for the big events and everything in between

Two years ago, right around this time, my doctors told me that I wouldn’t be alive for long. Wow, what a pill to swallow. You see, I was talking to the doctor about my son’s Bar Mitzvah and how it was set for November of 2012 … and he said I wouldn’t make it. He was saying that I wouldn’t see my son on the day he would become a man in the eyes of Jewish law, not to mention all the other things I wouldn’t be here for. But I was determined to prove him wrong. That very day, after I left the doctor’s office, I went home and put down a deposit on a venue for my son’s party.

Viki and Dell on the day after the Bar Mitzvah

Viki and Dell are all smiles on the day after the Bar Mitzvah

And, as you might have noticed, I’M STILL HERE! Last week, I stood on the pulpit with my son and my family and witnessed my son become a Bar Mitzvah. The emotions that I have experienced in the past week are unforgettable. I’m here today to tell the world how proud I am of my son, my family and myself. How surreal is that?!

I will remember that day as one of the greatest in my life. I was surrounded by my family and friends who love me. I could feel their emotions too, pulling me into their warmth and willing me to make my future dreams come true.

I danced!! I did … I danced and laughed and really enjoyed myself. I have been planning this event for two years, and it was everything that I wanted it to be and more. It was such a fun party. Dell had a great time with his friends, and every time I looked at him, he was shining. I think he may have changed a bit himself that day. Today, he seems to walk with more confidence. I think he’s going to be OK. He will make a fine man someday. And no matter what my future holds, no one can take away my part in helping my son grow into the kind of man that would make any mom proud.

Now, as I bask in the warm glow of memories of that day, one thing is clear about the past two years. Having that important event to look forward to gave me huge incentive to drive myself harder and harder every day so I could be there for my son. There wasn’t anything that would prevent me from keeping my promise to my son that I was going to share that special day in his life.

My daughter turned 10 last week, which means her Bat Mitzvah is in three years. The year 2015. I can do this. I know this goal is further away than the first one was, but I’m very capable when I set my mind on something. Besides, I’ve always treated my children equally … why would I change that now? If I was there for Dell’s big day, I must now be there for Bella’s big day as well. So as I write this today, I’m making a promise to myself, my daughter and to my family that I will do whatever it takes to be here on this earth for her special day. Everyone out there who may be reading this, I ask you to help me push forward and continue to keep the inner strength that I know I possess to keep my promise to my daughter.

Family and big family moments are what drive me forward. And it’s also important for me to have a focus within a focus. What I mean by that is, I wake up every day and I walk when it hurts and I take my meds that make me sick and I go about my day with positive energy and joy that today is Monday or Tuesday.

But, make no mistake, I will also wake up and mark my calendar and think, “OK, how many days until Bella’s Bat Mitzvah? Is there anything I need to book or order in advance to ensure her a perfect day? Because her mom is going to enjoy another family moment.” Because her mom is strong!!

A Different Kind of Bucket List

When I was first diagnosed with cancer, I didn’t think of all the things I haven’t done yet or all the things I need to get done. I thought of my family. Because I have young children, my first thoughts were of them. Wanting to see them grow up, to become responsible adults … and know I had something to do with that. My dreams have been concrete: of weddings and Bar and Bat Mitzvahs, of first dates, of my son’s first shave, of my daughter’s first period, of teaching them both to drive. It was never of all the places I may have once dreamed of going. As a mom with young kids and cancer, I look at things differently than I might at another stage of life. Sure, I used to dream of the places I wanted to travel to when my kids were off to college and I didn’t need to work anymore. But then I got cancer and just didn’t care about that anymore.

Not only are my priorities wrapped up in my children, but so are my finances. Cancer, if you don’t already know, is an extremely expensive disease. There’s the loss of work and income, the health and drug expenses and so on. So concern for my children’s financial future also plays a part in my life plan. All I ever wanted was to have my family secure and happy and be there to take part in it.

But a girl can always dream, can’t she?!! Almost every summer since I was a kid myself, my family has gone to the beach. As a child, it’s a wonderful happy time to run in the sand and play in the water. And as a parent, it’s wonderful to watch your children have those moments. So one of the things I had long wanted to do was go to the beach for longer than a week. (I could rarely get off work for more than that). Last summer, I was knee deep in radiation treatments in Indiana, which means our family hasn’t been to the beach — or barely anywhere, for that matter — in two years. We really deserved a break!

So awhile ago, I started to plot. Now that I’m on maintenance chemo, it finally seemed possible. I spoke with my doctors about rearranging my meds so that I could take some time off. Everyone pulled together to make this happen. At the beginning of July, I grabbed the family and our new puppy, headed to the beach, and didn’t come back until the months end. What a glorious time we had!! The kids buried themselves in the sand, jumped the ocean waves and ate all the junk food they could stomach. I got to put my feet in the sand and feel the ocean spray on my face. I even went down the volcano water slides with my kids and husband!!!!

Poor Jere was so worried because sun and someone who’s just been through radiation don’t exactly mix, but I wore my goofy hat with pride and sat under two umbrellas and had the time of my life. My kids would ask me, “What are our plans for today, Mom?” and I would answer, “ANYTHING WE WANT THEM TO BE!!!!” What a contrast to our day-to-day life that is usually overscheduled with either my doctor appointments or their activities. And the best part was, if they wanted to change their minds, they could. We were free to do anything we wanted. It was glorious.

Though I’m home now and back to all my doctor appointments and busy schedule, I can still close my eyes and smell the ocean breeze on my face. I smile. I may not have a bucket list, but I sure did make a dream come true this summer … cancer and all.

Cancer’s Made Me Smarter … In a Good Way

I think cancer has made me smarter. If that’s possible? My mom and I were talking today about nothing particularly special and she mentioned that she thinks I’ve changed. Not in the “oh-my, I’ve-found-God” kind of way, but in subtle ways. I think she’s right, and I like it.

It didn’t start right away. It’s been a slow transition for me. I’m just not so uptight about certain things. Examining it now, I think I feel calmer. So strange. A doctor basically tells me I’m gonna die, and somehow I’m calmer.

I also think that many of my family members have changed as well. My mom and I, who have always had a good relationship, now have a better one. I think we trust each other more. She has been by my side every step of the way. Every step. Every doctor appointment. Slept in the hospital with me. Moved halfway across the country with me for treatment for two months. And maybe it’s because we are with each other so much or maybe because we cut to the chase more. I’m not sure when it happened, but we don’t irritate each other anymore (like so many mothers and daughters do). We’ve been totally together in this fight for my life. And we’ve come to realize that no other fights matter. We’ve become so comfortable with each other, and we look at each other with profound deepened respect. She respects me for my determination, and I respect her for her unwavering support. Cancer has changed us both.

My father, brother and sister have all slowly grown different as well. I think what they all have in common is that they are more open with me. Somehow more approachable. At the beginning, we were all so scared but as time goes on we are still scared but we have insight. We have come together, we make more time for each other. It’s so nice. I think maybe cancer has made us nicer. Wow, how weird is that. Just when you think you should be angry, you’re not. Funny how that works.

I don’t sweat the small stuff anymore, and that feels good. Don’t get me wrong, I still worry. But I worry about the right things. Not worrying about the small things is such a relief.

I like me better now.

My Friends, for Life

Next week I’m going to turn another year older. Just a few years ago, this would have given me nightmares. But now I’m jumping up and down because another year has passed and here I am. So today, I don’t want to talk about all the pain I’m in. I want to talk about all the terrific friendships I have. All that I have to be fortunate for, because, crazy as it seems, I have so much.

So let me tell you all about my awesome friend Michelle. You know, the friend that you have known forever. No matter how many people may come in and out of my life, she is my constant, she is “the” friend. Michelle moved in next door when I was 7 and we have been friends ever since. Michelle doesn’t live next door anymore, so there are some long gaps between seeing or talking to each other, but she’s that friend where none of that matters. It’s like no time passes when we get together. I like to think of Michelle as not only my smart friend but the one who knows me the best. We grew up together. She’s my sister and I love her. She’s become such a strong woman, a great mother and my best friend forever. I’d like those who may read this to know that I don’t file a post without running it by Michelle. She is special, she’s talented, she’s kind, caring and my life is better because she’s in it!!!!

My local “posse” is pretty cool, too. My friend Patty I’ve known since we met at a Gymboree class when our first children were 3 months old. I liked her right away. Sometimes you just get that instant feeling. She smiled at me and I knew we would be friends forever … and we have been. We have raised our children together, we lost her mother together and now she supports me through all my struggles. She’s the one who ran my daughter’s birthday party when I was in the hospital, she’s the one who would drop off food when we would come home from a long day of hospital tests, and she’s the one who bought me my favorite sweater when I lost my breasts and was so ashamed. Patty ROCKS!

I can’t talk about my friends without talking about my David. He is my warm-hearted friend. He gets me. He’s so nurturing and so aware of my feelings and thoughts. He knows my needs before I do. I like to think of David as my gentle lion. When I couldn’t talk, when I couldn’t breathe, he held everyone at bay for me. He fights for me and holds my hand at the same time. He is such an extraordinary man, and I am so lucky to have him as my friend. He would do anything for me, and I for him. I’m never letting David go. He put on high heels for me and my heart belonged to him forever.

My friend Robyn lived here for  just a short time but it was enough to make me a Robyn fan for life. Robyn is so kind and insightful. She can say something in four words that others would say in 10. I truly admire Robyn. She also happens to be married to one of my heroes, a doctor who saved me a lifetime of pain and suffering. Robyn has opened her heart to me and has never let go. I adore Robyn! She is beauty within. She shines, and I’m so lucky to be in her light.

Julie, Jill, Rebecca, Elizabeth, Wendy, Amy, Kathy, Tracey and so many more friends to talk about. These girls set up a meal lineup for me that lasted a whole year. They call me, check on me constantly and breathe life into me, which all keeps me smiling and grateful for their friendships. They take my kids to soccer and call them for sleepovers when I need it most. I’m so blessed with so many people that care about me. I’m here today because of all my wonderful friendships.

Someday I’ll have to go into detail about my unbelievable family, but today was about friendships. I have a difficult time believing that there is a luckier person on this earth than I am. I would have had these relationships regardless of cancer, but cancer has opened my eyes to the depths of my relationships and the beauty of my life. I’m another year older and, damn, I get to live it with the the most wonderful support group ever!!

Hospital Fallout

Hospitals. What can I say about hospitals? I’m glad they are there, they help millions of people — including myself — but it sure can be difficult to stay in them over and over again for any extended period of time. Since November, I’ve been in the hospital four times. This most recent hospital stay, the result of a rampant infection, completely wore me out.

And the fallout continues …

More than a month later, my arm is still healing. You see, I can only use one arm for IVs and blood work. But the hideously strong medications blew out a vein once a day until we needed to resort to using my foot.

My lymphedema has gotten worse. Before, it was just my upper arm. But this latest infection — which led to my latest surgery — caused it to expand to my lower arm and my back. Now, I have to put a soft cast on my arm, then compression garments, then gloves … and don’t even get me started on what they are doing to compress my back and chest. I can’t wear any of my favorite clothes. Now they want to include me in a trial by wearing some sort of vest with arm that I need to plug into every day. Wow, I’m exhausted just writing it down … and that was all just this week. Can’t wait to see what’s in store for me next week!!!

And have I mentioned the nausea? I think I’ve been nauseous since the day I got my diagnosis. But a whole new level of nausea overcame me with this last infection. First, it was from those evil antibiotics. Then, post-surgery, it was the painkillers. They’d hit a nerve when they put the drain in, and my pain was off the charts. The powerful painkillers they gave me made me so sick I couldn’t lift my head off the pillow. I had to lie really, really still … even moving my eyeballs made the room spin. I had to concentrate on the TV to keep my eyes focused on one spot. When I couldn’t stand it anymore, I refused all painkillers. I know it sounds crazy, but I can handle terrible pain easier than I can tolerate the nausea. That kind of nausea just overwhelms and debilitates me.

A month later, the nausea hasn’t gone away. But it’s nothing like it was on the painkillers — except on the two or three days a week that I have physical therapy to try to reverse some of that new lymphedema. Apparently, having a PT mess around with your lymph nodes really messes with your whole system.

No matter what I do, I just can’t get rid of the nausea! It follows me wherever I go. I can’t drive home from my frequent trips to Johns Hopkins without taking every anti-nausea drug in my arsenal. Today, someone told me told popcorn cures nausea. How crazy is that?! I know people mean well when they offer advice like this, but I have serious doubts about most of it. Take ginger, for example. The cancer cookbooks swear by it, and my friends spent months cooking with it. I refuse to eat anything ginger again!!! It doesn’t work for me!! Yuck!!

The worst fallout of this most recent stay was how hard it was on my children. Especially my daughter. When I’m in the hospital, I can’t take her to the bus stop in the morning. I can’t come to school for lunch. I can’t take her to her activities in the afternoon. I can’t be there for her at all.

When I came home from the hospital last month, I noticed she was limping. My 9-year-old soccer star said her ankle hurt whenever she put pressure on it. I didn’t want to let any grass grow under this problem, so, despite my incredible pain and the drainage tubes hanging from my body, I drove her from appointment to appointment to get some answers. I didn’t expect the answer to be related to me.

I know it is so difficult for my kids to have a sick mom all the time. When I came home from the hospital, Bella seemed so lost, so longing to spend time with me, but I could barely get up the stairs to put her to bed. I’m always feeling like I have to make up for time lost or for not being like some of the other moms. No matter how hard I may try, I can’t seem to catch up.

So now, the doctors believe she is expressing her emotional pain in a physical way. When I asked the doctor if it had anything to do with me — with my cancer — he said that it was “very possibly so.” Apparently, this is somewhat common among children, especially girls. The physical pain she feels is very real, and the doctors even prescribed her physical therapy. I prescribed her lots of time with me. I’m happy to say both treatments are producing positive results.

But that feeling of always being behind, of being less …, well, I wonder how my children will look upon their childhood as they grow into adults. I wonder what memories will be stronger: my illness and all I couldn’t do, or my strength and all that I tried to “get in” or accomplish for them. It’s all for them. I hope they know they are the strength that pushes me within and the light that guides me forward . I hope they remember I always wanted them to be worry-free and happy. To not suffer the fallout.

Loss of Hair, Loss of Self

I look in the mirror and I don’t see myself.

It’s not like it’s bad, but I don’t really look like me. Even though its been a year, I still don’t feel like myself.

Losing my hair was a huge deal. I’d never realized how much I identified with my hair. So much so that when I lost it, I couldn’t look at myself in the mirror. I was ashamed. I didn’t want to face my friends and family.

You can never really prepare for what chemo will do to you. It made me feel so sick. And my shoulder-length, straight, thick hair kept falling out and out and out. I needed to get a broom to sweep up the bathroom every morning.

The constant shedding got to be too difficult, so I went to my trusted, longtime hair stylist on a Sunday when the shop was closed to shave off the remaining strands of my hair. I had no idea just how emotional it would be for me, so, when she asked, I allowed my sweet daughter to join me. Big mistake.

When my hair was shaved, tears just rolled down my face. No matter how hard I tried, I just couldn’t keep them from falling. My daughter was rubbing my leg and telling me how beautiful I looked. My 8-year-old daughter. It is a memory I don’t enjoy bringing to mind. Yes, I had a beautiful wig to wear (which is a long story in itself), and felt OK with it on. But from that day on … even still today … I don’t see the same woman in the mirror. I remember my husband’s face when he saw me when I returned home. It was that swift look of horror before he could put his game face on. My son gave me that same look.

From that day, my son and daughter never wanted me to leave the house without my wig on. As time passed, I didn’t care so much anymore and the wig was itchy, but my children felt better when I wore the wig. My Bella would say, “Mommy, are you going to wear your wig when you come to my school?” “Mommy, if my friend so and so comes over, will you wear your wig?”

So today, even though my hair is growing back — curly! — I still don’t see Viki in the mirror staring back. It’s not like I hate the person I see. It’s more like I’m resigned to the person I see. My mom asks me why don’t I cut my hair short and spiky like when it was first growing in? It looked so cute and contemporary then, and I know it looks more like a mullet now or something out of Vegas in the Elvis days, but I need to get it back to that shoulder length. Somehow, I’ll get control back then. If I want to cut it off at that point, at least it’ll be on my own terms. I’m in control, not cancer. But I wonder, when it’s shoulder-length again, will I look like me again? I fear not.  Certainly, there is the possibility that it will never get that long hair again because my disease will return and I’ll lose all my hair again … but mostly I fear that that person I’m looking for in the mirror is gone.

I realize it doesn’t have to be bad to be different, but when you are used to something for 40+ years, it takes more than a year to grow accustomed to someone else when you look in the mirror.