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It’s the Little Things

You know the familiar saying, “Stop and smell the roses”? Well, I’ve been doing a lot of that. Let’s say I’ve been enjoying the “little” things in life that I’m thinking aren’t so little at all.

  • My mom treated my family to a music performance recently that we all really enjoyed. The music blew through my body, and as I clapped with my children, I was completely in that moment. It was a lovely release.
  • My son refereed his first soccer tournament last weekend and my husband stayed in the background in the pouring rain to make sure no one yelled at him for a call they didn’t like. When they came home, 6 hours later, my son was so proud of himself. I looked over at my soaking wet Jere and I never loved him more. That’s a moment. Love between a father and a son. And what really touched me was finding out that my that son didn’t even know Jere was there because he was hiding to give him his grown-up moment. It’s the little things!!!
  • Some days, I just have to lie down in my bedroom, which is on the first floor of our house. Sometimes in the basement right below, I can hear my daughter singing really loud on her karaoke machine, learning all her new favorite songs. It’s music to my ears. I turn off the TV and just listen. It’s the little things.

It is important to open our senses to all that is around us. If we miss the here and now, we miss everything. We are all busy, but there is beauty everywhere. And if our eyes are always closed, well, we’re going to run into a lot of walls.

I learned about enjoying the small moments — taking things in, breathing, feeling the joy — from my family and the great friendships in my life. They have taught me how to open up my senses and reach for the minutes and seconds of each day.

My Michelle, who has known me the longest and loves me so deeply that she always knows when to give me my space. My friend Patty, who takes my Bella for the best shopping days and makes it a point to make regular coffee dates with me even though our paths don’t naturally cross anymore. My darling David, who makes me the most awful muffins … and who knows just how to make me laugh. My troops, Julie, Jill, Elizabeth, Dara, Robyn, Rebecca, Alyson, who I can always count on to do all the little things that only they can do! My school friends, who always are there to help me day to day and to lift me up when some days I just can’t go anymore … Kathy M., Amy B., Wendy F., Tracy S., and my new friend Kathy D., who always knows a “guy” to get exactly what I need done at the exact moment I need it done.

The little things in life — like the air we breathe, the change of seasons, the beauty of a butterfly flying free — I want to enjoy those things every day. I want to smell the good smells and the bad smells. I don’t want to miss a thing. I love life. I love my family. I love my friends. And I love the “little things.”

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p.s. On an unrelated note (though it’s really all related, isn’t it?), I’ve been doing some research for the past six months to find something – anything – to help me with the side effects of all the crazy chemicals running through my body. Lack of sleep, low energy, night sweats and more.

A mom with cancer who is trying to raise her kids can’t afford to sleep all day.

I discovered a nutritional system that has been a great benefit to me. The idea of promoting products on this blog makes me really uncomfortable, but if it’s something you think might be useful for you or someone you love, please contact me directly at stage4mom@gmail.com. This product has been effective for my symptoms, but I certainly can’t promise it’ll work for anyone else. And I’m in no way financially connected to this product.

To Our Beloved Beverly

One of the most beloved people in my life passed away this week from this cruel decease called cancer. My family feels gutted, heartbroken and completely sad. We watched her pass little by little. My children and I sat by her bedside and talked to her, kissed her and held her hand. I went there every day and put her lipstick on her, fixed her hair and told stories about our shared glory days. She’s really the only grandmother my children ever had other than my terrific mom. Both my husband’s parents are gone.

As I watch my children, I can see in their eyes the deep fear that this is going to be their mom someday. They worry that it will be them someday. And I understand because I worry and struggle with the same thoughts. This has wrecked us … depleted us. We are left with memories twirling in our brains.

It’s so difficult to not make comparisons. Seeing yourself lying there helpless while people come and go and look upon you, cry or hold your hand. I wondered if she was inside there shouting at us all to leave her alone. To stop looking down on her like a fish in a fish bowl. TO GET OUT.

When I was in the hospital in January, it was Beverly who flew in from FLORIDA to care for my children when I couldn’t. We noticed then that something wasn’t right. We never expected brain cancer. We loved her very much.

Today I am more frightened for what I have seen than I was yesterday, so I’m looking forward to that “Time Thing” that they say heals all wounds. But I feel doubtful that this experience won’t leave inside us and will feed on the fear we all share for me and my own lifespan.

Today Mark, Beverly’s husband, sleeps next to a shirt of hers that sleeps placed on the pillow next to his. I wonder about my own husband. I wonder about my children. Today I am not so strong … I am frightened.

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.

Life, Cancer and the Hamster Wheel

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Just when you think life is starting to calm down as much as life can calm down with Stage 4 cancer, something throws you another challenge, just to see if you’re paying attention. Isn’t that Murphy’s Law … anything that can go wrong will?? Well that seems to be my life now … and maybe always has been, even before cancer. Here’s how the latest Murphy’s Law episode goes:

A couple of months ago, I’m finally starting to feel better, I’m walking up to a mile-and-a-half a day and getting organized for my son’s Bar Mitzvah. Then — bam! — my oncologist tells me I have chronic tonsillitis and it’s affecting my immune system. They gotta go, he says. Are you kidding me????!!!!!!!!

So here I sit today, recovering from yet another surgery. What a difficult procedure this was. The pain … oh my. Sometimes I feel like a hamster on one of those wheels and I just go round and around and get absolutely nowhere. Frustration is what I feel the most. I have so much to do. My children started school, and here’s yet another year that I’m missing their open houses and missing more soccer games. Boy does this get old fast!

Now, if I choose to look at the situation differently, I could say this has been the best diet I’ve ever had. Holy cow, even if I wanted to eat … it hurts. How cool is that??!!! My son’s bar mitzvah might not be organized and I might not be able to speak to anyone during the event but, damn, I’m gonna look good! I think I’m gonna have to have my dress altered. How screwed up is that thinking??

Well, screwed up or not, I’m looking forward to getting out of this bed and back to my active life. Getting back on that hamster wheel until the next bump knocks me off … then I’ll get back on and start all over again. Because that’s my life now, and I need to go with the flow. It doesn’t necessarily make it easier to understand, or always seem fair, but I’m lucky that I’m strong and tenacious enough to keep getting on the wheel.

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.