More lessons….“You don’t get to choose if you get hurt in this world, old man, but you do have some say in who hurts you. I like my choices. I hope she likes hers.” From “The Fault in Our Stars”, John Gree

There are doctors who will help, but you just have to keep reaching out. This past week was consumed with all things birthday combined with all things cancer. I decided no matter how much side effects I experienced or how much I was having a potty party, I would escape to talk, email, see, or text friends or family. My windows of freedom are teeny tiny, but I was going to put my best foot forward (now almost healed from that damn chemo drug).

Back in 2010, I had my tumor analyzed by different companies to find out which drugs could kill my cancer. This was in a lab setting, so you had to keep in mind that real life was different. In doing so, I met a wonderful doctor/scientist over the phone who was so puzzled with my case that she said she wanted to continue to be informed. Thanks to my rock star husband who says he has chemo brain by proxy, but I think his brain is still working at 150% of normal capacity…he continued to send scans, reports, etc…well, we had a conference call this week with the doctor. (Dr Laura, from the Clearity Foundation). She told us she lives, eats, breathes science or more specifically cancer in her days off and she was talking about me at dinner. Besides acknowledging Jim and how hard it must be for him to go through this journey by my side (no one usually acknowledges Jim since it is most often about ME! I am even at fault here!), she said she has been there with me the entire time. She also apologized for science not being able to give me answers. This frustrates her that my cancer is so crazy. We discussed the drug that was added and talked about more ideas. Although she isn’t an oncologist, she understands the mechanisms of the drugs and how they are supposed to work. Plus, she worked on developing a drug very similar to the one I added. In talking about my history and what we have done, I realized some mistakes were made by me and my failure to clearly understand and communicate. My doc did listen to me and does listen to what I say. I was the one who didn’t want weekly chemo. I also know my cancer responds to a drug for a while and then marches on. This is the pattern from all the data that I have kept over the years. With my tumor marker still being so high paired with a not-so-pretty picture from my scan, there is little wiggle room. I need to get out the big guns and get the cancer in control. Jim and I conclude a swap must be made. I must communicate clearly that I am no accepting of stable disease at this level and must make every attempt to have a drug to kill more of the cancer. I know this is critical for survival. Understanding the behavior of the cancer as best as I can and understanding my wishes, I must continue to be simple and clear in my explanation to my doc. No offense to the local oncologist, but I am not an average cancer patient that needs to follow the average protocol for the average cancer patient. Honestly, most patients no matter the disease really need to be understood and treated individually.

So, after the blood tests at Hoag Cancer center, I was good to “go” to UCLA for chemo. Especially since I had taken one too many shots to boost my white blood cells (I know this because of the excruciating bone pain that I have come to accept as another side effect of living with cancer). My white count was out of the park. This always confuses me since it says, “immature cells”, so I guess I should really still live in the bubble, but I usually don’t follow that rule. At UCLA, my doc was ready to do the “fly by” as he greeted the many cancer patients in their pods. He had his side kick newbie with him (Fellow/intern/way to smiley for oncology like either he had terrible gas pains or he was in fear of these cancer patients). I told them both to grab a chair and started waving my white paper with my new strategy written on it. They both smiled as we took control of my cancer care. Of course, I was not suggesting chicken liver infusion to cure my cancer. I had a chemo drug listed which I had taken in 2011 and know that this drug is currently being used with the weekly chemo I am already on. He thought it was a good idea. I didn’t hear most of the rest of what he said as he had to mention the side effects of a drug combination. All I heard was the voice of Charlie Brown’s teacher, “blah, blah, blah….” My nurse did agree that  I had to hit the cancer hard or it gets out of control.

Despite the best of beliefs that I am “fine” and my chemo brain is not gone, I had an online shopping incident. At least, I did not order the same items over and over again. I decided that I needed make up and underwear which could be easily purchased online. Unfortunately, I somehow decided that shipping my underwear to my father was a good idea. So, needless to say, I am limiting my online shopping until fully supervised by Jim or Alex. Having a foggy brain is something that I am now used to. I am just off my game a bit. Instead of misplacing items, I just completely forget what I was doing until hours later. A forgotten piece of toast in the toaster or various glasses of water throughout the house or half eaten apple or piece of cheese are just some of the misplaced items on my treasure hunt throughout the day.

Besides my lesson of the week to continue seeking out doctors or anyone who can be on your cancer team, just by asking, I am reminded how people respond to me living with cancer. There are those who don’t want to mention the elephant in the room, and that is okay. There are those who still need to communicate stories of what worked for friends or family. There are those who still have to tell you about a relative who died from cancer. There are also the few who completely understand and get “it”. They call, text, or email and understand when the pain is so deep and raw or living with cancer tomorrows is often scary. These few expect nothing in return and allow me to be the new me. They laugh at the old me and laugh about stories of my ole’ days of the crazy multi task obsessed possessed moments. It is the reality of the puzzling few who don’t understand even when I demand to be heard or hammer the truth of the viciousness of cancer into their ears. They cannot be there or go there or listen. Acceptance is the answer, but I cannot help to question. Is it their selfishness that cannot allow them to see the truth, is it their fear, is it their immaturity, and is it their lack of life experience? My old self had held the bar high and had a policy of zero tolerance for those who didn’t walk beside me. My new self (besides taking control of my cancer swapping drugs) must take control and swap those people with the many others. Am I disappointed? Of course, I think that is human nature. It becomes the shock of reality of who really has your back and despite the kindness of heart who will be unable to be there especially in difficult moments. The reality of the warm embrace knowing there are many who constantly have me in mind whether in thought or prayer or in laughter of what things used to be. In my old working days, I was all about what motivated each person to come to work and understanding each person’s motivation. I know that no amount of cancer will awaken these few. This lesson is all about the many that support me from near, far, and everywhere in between. The gratitude and appreciation is something I cannot fully express. I can only hope that you know how much each of you means to me. Each of you gives me strength to face the day.

Yes, there are those who do and live while others continue to focus on the small unimportant things or stress over all the little things which simply don’t matter.

 

“You don’t get to choose if you get hurt in this world, old man, but you do have some say in who hurts you. I like my choices. I hope she likes hers.” From “The Fault in Our Stars”, John Green.

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One Response to “More lessons….“You don’t get to choose if you get hurt in this world, old man, but you do have some say in who hurts you. I like my choices. I hope she likes hers.” From “The Fault in Our Stars”, John Gree”

  1. Ruthie Says:

    Joanie you continue to amaze me. Your humor, your wisdom and the strength you continue to find are just a few reasons that I am in awe of you. I am sorry that you have found that people you thought you could count on are not by your side, but on the other side are those many, many, many people both near and far that you know are in your court. Sending lots of positive energy and hoping you get out to enjoy the sunshine! Much love and hugs! Ruthie

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