“Fear only has as much power as we give it space.” — Josh Ritter

My inner voice was telling me, no more chemo. I was really trying to be in a good frame of mind when I went for my chemo. Carrying the latest batch of sunshine cupcakes with hand painted ladybugs, I could not help to smile. I could not close my eyes to the faces that greeted me- gray, gaunt, clothes hanging onto the frames of once strong bodies, efforts to smile seemed like lifting a 30 lb weight, women asking what is next…I tried to ignore it all, but everyone has a breaking point. I just did not know that mine was coming. Nurses who were focused and hurried, stopped to take photos of the cupcakes. Smiles from the nurses seemed to turn on the lights in the matrix. After numerous mistakes due to new computer system and doctors needing more training on the system, I finally started my chemo which was down to 1/4 of the original dose. I don’t know why but I started getting a migraine. I barely started the chemo and my nurse asked me if I was ok. I said that I was okay, but tears started streaming down my face. My doctor came over and held my hand. Earlier, we had talked about the Scripps trial and coincidently my nurse was responsible for trials at UCLA before she had kids. My doctor asked if I wanted to stop, but I just asked for ice. I had enough…enough of the chemo, enough of the faces, enough of the smells. I finished my chemo, but the waterfall of tears shocked not only my doctors and nurses, but Jim. I know he felt helpless and I just couldn’t talk to him because he knows me so well that I would continue my tear festival if we talked. My nurse said quietly, ” look around, you would never know you have cancer. You can do this.”

Of course, I went home to pass out and gathered my strength for Scripps the next day. The good thing about Scripps is that even if I do not get the vaccine for the trial, I don’t get a placebo and I can continue cancer treatment as long as it isn’t chemo. I am fine with this as it forces us to think outside the box of hitting the cancer with a hammer as well as everything else inside my body. I began the screening with as much as I could do having just had chemo. I will continue the screening in 3 weeks or is it 2? Once that is done, I will know in days if I get the vaccine or not. The vaccine is made with my own cells. This is the latest type of treatment for cancer. You may have read something about melanoma and vaccines. Some vaccines genetically engineer your cells to go crazy, but this does not do that. There are no side effects, but I am sure if I get it I will have strange side effects. Anything has got to be better than the chemo. This whole process is very strange and surprising. I always wonder what the “other people do”. I guess unless you have your own team, it is difficult to gather the strength and do all this research. I am lucky since my husband is a rock star and the rock star of research. Since I am a “skimmer”, I doubt I would even research correctly with a clear head.

Speaking of head (as I usually do), my hair is still falling out for something new and different. Since the dosage was reduced, there is less of a rain shower of hair. I fooled the Scripps team as they commented that they were “surprised that I didn’t lose my hair”. HA! I just love telling people, it is a FAKE! I am glad that I didn’t lose my eyebrows or eyelashes as I did not have the patience for this summer art class of draw on eyebrows. If I had the option, I am sure my eyebrows would have expressed confusion and anger (one of each).

I do have to express my frustration for one more doctor telling me that cancer is a chronic illness. Come on…couldn’t they come up with something better like cancer is an illness that we don’t have a cure for? I am not sure if that statement is supposed to make me feel better, but right now it just causes me more frustration. If it is chronic, then why am I coming up with the plan (or rather why is my husband finding trials which are available for public viewing instead of my team)? Again, it is the ole’ case of you really look too good to have cancer. Good to know, but since I appear outwardly differently than my broken internal body issues, you would think that I am not the first to try this trick….It would be nice if my team of teams would have a menu of choices for me. It would be even better if this came with airfare, hotel, room service, pool side butler service, or turn down. Since we do not play doctors in real life, this makes it all a bit frightening. On the other hand, the Scripps team informed me of ocean and golf course view rooms. This sounds like an upgrade for sure. No matter what happens, I know I will get to postpone my chemo for one week. This week I am back to Hoag for blood tests since my team is convinced my blood will crash with even 1/4 of the dose. I am thinking completely opposite. I do not have time for a transfusion. My days of darkness are over. Sunlight or nothing! With weeks left before school starts, I did dare to ask Alex how he thought the summer was going. He told me that it was the best ever. Glad to know something is working out right! So, I will drink my doctor prescribed laxative to more sunshine and no darkness.  Hope you will do the same, but with red wine, mojito, margarita, mai tai, or chardonnay!

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3 Responses to ““Fear only has as much power as we give it space.” — Josh Ritter”

  1. Audrey Says:

    Joanie my heart was breaking while I read your blog tonight. My prayers are there for you, Jim and Alex. I pray you get into the trial at Scripps, and have the ocean view room and no chemo for a while. I just want things to be o.k. for you. Just be o.k. Joanie. Not asking a lot am I!! My love to you. Always thinking about you, Audrey

  2. Pendar Says:

    Joanie, as I read your blog, I am amazed by your spirit and strength.

    I wanted to share this Bible verse with you: ‘Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” – Deuteronomy 31:6

    You are in my thoughts and prayers. Pendar 🙂

  3. Kelli Clifford, formally Moore Says:

    You amaze me! Thank you….
    Enjoy the rest of your summer! I am sure you will cherish everyday!! And thanks for reminding us to do the same!

    Lots of loves, hugs and prayers to you, my friend.

    Kelli

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