The adventure continues…

It all started on Monday at Cedars. At Cedars the cancer center is in the basement as I am not sure if it was a throwback to the 70s when people just whispered the word cancer and no one talked about it. Those were the days when your grandparents had cancer instead of now, when cancer hits children, teens, and moms and dads. They improved the basement by pretending to light up the place with artificial light. I still know I am in the basement because of the absence of windows. We meet with the team and Jim has his laptop. I am armed with my notes of treatment list and future list. Our goal was to get his opinion. His goal was to sign me up for a trial. This made for an awkward meeting. I tossed the mention of tween Alex as if that would humanize me for this “experiment”. This is a fine line docs walk as they must fill their trials. Going back to UCLA trial doc visit, the doc seemed apathetic. Now, I really prefer that to the harsh reality tossed in my face. I have to admit that he tried the nice approach first. When this didn’t work, he avoided reviewing my real options and tossed in how it won’t work or will eventually stop working. Again, no one can take away my hope. Lucky for my rock star husband jumped in when tears began to stream down my face asking how I would tell my son that this option which may or may not work would be my best option. Jim forced the issue making a dream scenario if all other trials were open, would this doctor choose this one for me. The answer was “no”. I signed the papers anyway just in case. Of course, these research nurses asked Jim if he was a doctor. He said that he had to learn this to keep me alive which is totally true!

While sitting in the Cedars meeting, we saw the fax come in with my tumor marker rising again. We have a small window to make the right decision. I call my UCLA doc, Dr Konecny who answered and advised me that without knowing what I was about to say, had ordered this new duo of chemo already. The plan was in place. I would try this new combo which is an off label use of existing chemo. I have yet to see where it was done in other cancers, but I have to trust that he said he knows this combo. This combo is harsh and causes major side effects. I chose not to read about them until Weds. What I also had to deal with is that somehow my new assigned nurse from the insurance side is proving to be more about the insurance point of view. My old nurse assigned via an old VIP department which was an outsourced insurance benefit proved to be life saving for me. The new benefit is proven to be life squashing and stress inducing. Even though we all know that UCLA is the slowest to bill for chemo, I had to sign a paper saying I would be paying $14K each week. We both know it will get resolved, but they don’t know that and so do many other cancer patients. So, these cancer patients wonder if they need to sell their house, car, IRA funds, stocks in a child’s college savings. All is very annoying. We decide to just try as much to help the process along. Meanwhile, I need another resource to help me through this weekly new chemo. I decide to call the palliative dept at Hoag for many more reasons. I need a local resource, an advocate for me, someone to call on my friggin time zone. This new nurse worker is not so VIP. She calls during her 8 to 5 shift EST, checks the box that I am not jumping out any windows (otherwise, the script would advise her to call the EAP plan) and finishes her 5 minutes. My old nurse would call me three times a week when I was on a new drug protocol and ask her boss, other nurses across the US, old colleagues for tips and tricks to help me. I know she helped me more than I probably told her. I know she prevented many trips to the hospital by helping me manage my side effects.  I never said thank you enough to her, but I did spill my heart to her telling her how much she meant to me.

Meanwhile, Weds approaches and my VIP status is renewed at UCLA. I get hugs all around and support from everyone. We are now told that these drugs alone without pre meds will take 5 hours. I pull out any pills I have which I can take by mouth to eliminate more time for infusion. My nurse navigates this path for us. We still end up staying there until 5:30pm from 10am! We got home at 8:30 since we had to get off the freeway. On a bright side, I had no serious side effects, but I was fully loaded with anti-nausea meds. Today, this new combo hits me strong and I feel like I hit a brick wall. I took a long nap since my head could not support my body. Oh, yes, there was also the mention that this is every week and since it is so complex, I must go to UCLA. One day at a time. We will just do one hour at a time. On a positive note, my mom is coming at the end of the month so we are trying to plan something fun to do. It is always good to have fun things to look forward to! Enjoy your weekend, your sunshine…LISTEN to what your body is telling you, breathe, relax, take a moment, reduce your stress, enjoy the moments NOW, today! Tomorrow is another day. No regrets. Live each day to the fullest. Please, please try not to stress over the little stuff.

I was listening to the conversation that Dr Glaspy was having with a patient who has curable cancer, 95% curable. He told her over and over that it was cured 95%. They wanted to know about the other 5%. He told them, you could walk out of your house and get hit by a bus. He is like that…very in your face. He told them that he can only deal with scientific facts. He told them they were not listening. He walked away, shaking his head. I know what he was thinking as we have heard him give other scenarios too where there is no option or knew what he said to my cousin Margie. I asked him if I could have her odds or her cancer. He responded that, “there is always someone worse than you who would be willing to trade places with you in a minute.”

I know this to be true as I had to say goodbye to my neighbor, my friend, my fellow warrior this weekend. She passed away in her home with her family beside her. We had to tell Alex. He didn’t know how to handle that feeling of sadness. He played his piano and trumpet for an hour. Then, he wanted to go for a run. Unfortunately, they were taking her body away at that moment. Jim called his gym to see if he could take him since we don’t have a membership for Alex. The manager was more than happy to help. Alex keeps telling me that he sees my neighbor Gina everywhere he looks. I told him that she will always be with us just like Margie, just like Charles, just like Aunt Sylvia and Uncle Max. He said he understood, but I know his thoughts are much deeper. He kissed me on my forehead and told me he loved me. I know his worries, but I push them aside to fight on. I can do this, so again I ask you to make the most of your days. Listen to your thoughts and see what they are telling you. If it is that cleaning your house is more important than sitting for 5 minutes with your husband, son, brother, sister, mother, father, friend and listening to what happened during their day, then you are not hearing me. I know firsthand about the limits of tomorrows as living with cancer we are forced to face them weekly, daily, or monthly. As I watch the sunset in the distance and see the glow of night coming, I picture walking on the beach with Alex and Jim. Find your happy place. Today. NEGU!

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2 Responses to “The adventure continues…”

  1. Valerie Says:

    NEGU Joanie! You are amazing! I think of you all the time and your words inspire me!

  2. Diane Peters Says:

    Fight Joanie, Fight! I love you and I’m cheering you on each and every day!! xoxo

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