Beer and immunotherapy, a good combo?

Either because I can taste hops in the beer or just the memory of drinking beer in Belgium, I had to have a beer this weekend. My ever calculating mind won’t stop since we are now on countdown to Alex’s bar mitzvah. Just typing the word, I start to tear up. I read his speech and his thoughts are amazing, thoughtful, and insightful. I don’t know how I will get through the day without crying. His appreciation of how hard I work to live is something he gained from Camp Kesem.  This drug takes 8 weeks to work and I am dancing, praying, hoping that when his bar mitzvah day arrives that there is no crisis. Yes, I am a believer of thinking about today, but when you’ve experienced all I have, tomorrow is in the back of my mind.

This past week I was interviewed by an agency representing a pharmaceutical company. I am the perfect candidate. Now on my 24th regimen, diagnosed as stage IV and I am enjoying a quality of life that is unknown to many ovarian cancer patients. Forced to review each drug, the side effects, the years of treatment, and the feelings along with each recurrence, it was an exercise in facing the whole picture, the reality. I am betting this was for the PARP drug, but they don’t tell you. You are not allowed to use your name or tell where you are treated. It was a valuable experience and my interviewer informed me that a team would be listening in and the interview would be recorded. I had to mention about women all over the US and world who don’t receive the same drugs, opportunities, due to financial problems or insurance battles. I explained that ovarian is mostly a mom disease. These are moms with children of ages ranging from months to full grown adults. I used to be the young one, but I find that I am the old one now. There are too many young women diagnosed. There are also too many women not living due to this crazy cancer and it’s horrible statistics. When I stated the drugs year by year, I could think of friends, my cousin, my neighbor, gone from cancer too soon.  I think the question about, “talk about a typical day in your life” was a shock again to the reality that I face daily. The cancer job to stay alive is ridiculous. I had to explain a most recent week. This past week included scheduling a brain scan, an attempt to get chemo appointments, follow up with insurance disputing $20k for a drug I already got, follow up on UCLA samples never sent since July, and facing aches and pains from side effects. There is much more to the cancer job. The job of being a mom, wife, sister, daughter, cousin, and friend. Life goes on and friends face every day challenges that I love hearing about…yes, this is the every day frustration that life brings real life problems.  Mostly, I love what most of you may not think about. I love taking Alex to school or picking him up, making dinner for my family, talking about the day. You see when on immunotherapy the fog is gone, so I can be fully present and really hear what my boys are saying. Again, when feeling this clear, I tend to run like I have never run. I do everything I can and plan moments sooner rather than later.
One moment was having our Cantor come over with her guitar and Alex with trumpet discussing, playing, listening, and choosing the music for Alex’s bar mitzvah. I would pick in my head the song I liked and Alex would always pick differently from me. The only song/prayer was the healing prayer song that Alex said it was my song and I should pick the melody. I told him it was up to him. Hearing the melodies, guitar sound along with Alex trumpet tunes, I had flashes of memory and felt an overwhelming sense of joy and emotion. Alex explained that his emotions are expressed in his music. Watching him play the piano while he moves his body to the music, I smile when I see and hear his passion.
With bar mitzvah planning, there are a full set of list of items to do along with the cancer job and mom job etc…lucky for me is that Jim and Alex are very involved and extremely supportive especially when I freak out that the candy for the candy buffet is being delivered during the hottest week of the year or that I can’t remember Hebrew any more or even basic English! What is my biggest surprise is the RSVP process. I loved the parent who told me and thanked me for giving her family and children a teachable moment in manners and party etiquette. Yes, RSVP equals respondez Vous s’il Vous plait. Bottom line, please respond. I love when people tell me “write them down”, I’m wondering if the good ole’ RSVP is now replaced with evite, email, and text. Does this mean that when our kids get married, they will simply send a blast text? Now, even for my wedding, we had a website of all the info. All I can say is that the RSVP has become our one funny moment each day. Not sure why people find it so difficult to send the card to me already stamped. Don’t get me wrong, I know there is planning involved, but my chemo brain is just becoming un fogged, so the “write the down” RSVP is a bit challenging. This leads me to the entire world of manners. I love a child/teen who thanks me or asks how I am feeling even asking if I feel better yet. Bravo parents, you are still teaching. Unfortunately, I hear the way some kids talk to their parents, teachers, or waiters etc…huh? My parents always taught me to treat everyone the way you want to be treated. Do people just not care? I have had doors slammed in my face while having arms full of bags. I have had people act beyond rude…forget kindness. Now, I am talking about adults. Yes, these are adults teaching their kids or not teaching their kids. Take a moment to remind your child to say thanks, treat people with kindness, understand good manners when at a party such as thanking a host/hostess, wishing the person happy birthday etc…they can be reminded of this lesson no matter the age. They will eventually have jobs and despite the technology, kindness and thankfulness goes a long way.
This reminds me of the interview Alex and I had this week about Brickshare. I realized I was guilty as the people I talk about when it comes to thinking outside our little circumference of Aliso Viejo. Within these walls, there are homeless students, students and families who struggle financially. Just a short drive away as Alex reminds me, there are thousands of families who struggle not only with homelessness, but with survival for every day basic necessities. He reminded me of the gangs where kids can’t walk down the street and Kidworks provides a safe place after school. These places are minutes from our home. With all our crazy schedules of sports, music, school, homework, church/synagogue, friends, I am asking you to pick one day in the next 3 months to say, “Thanks.” This request means that you should take your kids to one of the 6 places Alex partners with for Brickshare or a non profit of your choice. A great opportunity is coming on 10/18 to make Brickbots at South County Outreach from 9-12. Alex tells me that he is working with DJAMS but we have no one signed up. We only need 20 kids and 5 adults. If you live somewhere else or that date doesn’t work, visit your local food bank. Go shopping and buy a bag of groceries for the food bank. Better yet,have your kid contribute their allowance or tell them they have to use a budget of $5 and see what they can buy. Alex keeps me on my toes reminding me that Project Hope Alliance, Families Forward, and South County Outreach need some lunch items or even breakfast items. They won’t get donations until Thanksgiving and some have empty shelves from the summer.
Please take the time to explain good manners to your kids, show them how grateful they should be, teach them a value of one dollar, and explain the RSVP process. In the meantime, what can you do today besides find your sunshine and stay cool? Thank the cashier, thank the server, be patient in the heat, show some kindness and compassion, you will be happy you did. As always, think positive, stay positive, and laugh a lot even at the crazy drivers or what about the mentally challenged Von’s grocery bagger who told me that “I’m gonna get cancer and die.” Not sure what that is about, but it was maybe due to my wig wearing or was it the fun fetti icing? Got to laugh, but I will not be shopping at Von’s for a while!

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