“When the mind is backed by will, miracles happen.” unknown

My heart is heavy and I am definitely on the edge of screaming, laughing, or crying. Every summer we watch Australia’s Master Chef. We are always impressed with the Australian spirit of support, kindness, and positivity. If you compare this to US Masterchef, it is completely the opposite. We are now on our third season of the show and enjoy watching these home cooks create some amazing food. What is more fun is the slang and lingo of the Aussies, “how you goin?” and even in moments of food disaster, they manage to see the bright side of the situation.

I don’t like to think about the cancer inside of me and it just creates a bad visual. Alex has been having moments of sadness since he says, “he can see sickness in my eyes”. Again, cancer sucks for everyone in my circle. It is frustrating and annoying. My week started with my PET scan. Now, I have had many of these scans. I know my body and veins. I told the technician not to use a particular vein and I guess he thought I was one of those types of patients who are just complaining or have a fear of needles. Of course, after I had told him not once, but several times that it hurt, he declared that the catheter would not go in…Yes, I told you so! Back to the arm/vein I told him to do. I was the first patient of the morning, but instead of phasing my drink consumption, he added ice, told me to drink it all since they had back to back PET scans. LIKE I care!? I did what I was told to do and sat in the dark room trying to not think about anything and stopped myself from counting backwards from 1000. I was shivering even with a warm blanket. I knew I wasn’t supposed to move, but reached for another blanket that was used for my arm. Since I was tired from not a lot of sleep, I almost fell asleep, but then the door opened and I was rushed into the scan. I was awkwardly propped up, and missed something which I remembered the pillow to support my back. Oh well, too late. Inject solution started that makes me feel like I peed on the table. Now, I am used to the sensation. No one explained anything about the timing and I was slid silently into the scan tube with the banging and buzzing. My thoughts turned to the awkward position of arms over my head, but this time a pillow was provided. Unfortunately, I thought my hands were frozen and thought to myself that it would have been nice to offer a paraffin dip with moisturizer for hands and feet while in this machine. Anything would have been better than this strange silence of voices. Images drifted into my mind of Alex and Jim laughing, but I pushed the image away as this brought tears falling down my face which I could not dry or wipe. The machine stopped and I saw people wandering in and out of the room and a person behind the glass looking at my images. ( I saw them walking back and forth.) No one said anything. Why were people in the room with the machine? Was this a party or was this party over? What seemed like too many minutes ended with “oops, I forgot to put that pillow for your legs”. I thought to myself that I was happy this wasn’t my first time. I pledged to write to Hoag and coincidentally received a survey which I quickly completed. No wrap of my arm to prevent bruising, no glass of water offered, what happened to the Nordstom’s of PET scans. I learned that Hoag Irvine will have the machine and will be offering scans soon. If I am going to have a party, I would rather be there. Next time.

Meanwhile, the report came back, but seemed to be missing some key comparison. Yes, the radiologist language indicated the cancer was more than microscopic and seemed to be exactly what I didn’t want to have happen. I talked to docs at UCLA who wanted the cd of the scan and were upset that some comparisons were missing. Of course, this just motivated me to call radiology and explained that the doc that read this scan was the same one who misread my first scan. I wanted more comparison and someone else to read it. I had talked to numerous people and made too much effort. I still think what others would do. They assured me that the scan would be read again the next day.

 

I began my day with my own comparisons based on prior discoveries. I pulled up each report and compared items from the areas of concern…was it a cyst on my liver or tumor, did the implant on the liver stay the same or grow, was this the same area back in 2010 that never left, was my pelvic area the same area as before….then, Jim told me that I did a good enough job and hoped all my efforts made me feel better. I asked him if he thought I should call radiology again with my “findings” and he said he thought my 6 calls were enough and someone would respond. Sure enough, a call from a radiologist came and he had read one of my many scans from 2010 to now. He told me that he had spent hours reviewing the scans and then told me that he had a family member with peritoneal, so he had that kind heart who understands, but is a doctor too. We went through my list and his interpretations. He was so amazing describing sizes of these implants (peritoneal cancer) on the top of my liver, on the front and behind we’re the size of a peanut (without the shell). He confirmed that one was in the exact spot as the one back in 2010. If I thought with perspective, all this chemo has kept these microscopic cells from growing for about 2 years into these “nuts”. He also explained how free fluid is not good since that would mean that those cancer cells could spread to all the organs in the abdomen. The fluid I have is considered to be a gelatinous blob in a pocket in one area. I thought was it something that is a full crisis where I should miss my trip? He felt not, but again explained he was not an oncologist. He did tell me of doctors who treated his family member at UCI and asked if I had been there for another opinion. It has been on my list and will move to the top when I return. He explained his opinion when I asked about UCI. We ended the call with his number and his kind message to call if I ever had questions again. I felt so lucky and again realized without all my crazy cancer job effort that this would not have happened.  Lesson learned again, the doctors are out there, but you have to find them. I did my recap of this call to all my UCLA docs as if I was part of the tumor board. Of course, I had to google the spelling of his medical terms, so I was speaking the same language.

 

Then, my job continued with blood test Thursday. After having my blood drawn, I was informed by one of my favorite phlebotomist that whoever did my scan really did a number on my veins. Oh great! While I waited for the results, I started with all the different plans, plus had a few conversations with myself. The results came in and I started sending emails to UCLA.  Strangely enough, my blood counts have plummeted most likely a result of the new chemo. I am constantly trying to put all this “junk” to the back of my mind, but know that all that surround me are feeling my worries despite my efforts to disguise myself in laughter and smiles.

Now approaching day 4 of the new chemo, I am finding it isn’t that bad especially since I have been on this ride so long that I have an arsenal of potions for side effects. Meanwhile, the call came in and votes are in…I should continue to take these renal cancer chemo pills, get the same chemo on the 5th that gives me hand and foot syndrome, and there will be shots to boost my counts. These shots will help me get through the cruise without issue. When I return, I may need to change things up, but for now this is the plan. We also discussed additional genetic testing should be done since it is NEW and for women who do not have the main genetic defect of BRC1 and BRC2, but have others. My focus was asking him once, twice, three times if he was comfortable with this plan and that I have time to allow less drastic measures now. He agreed once, twice, and three times. Unfortunately, this new chemo regime plus the old chemo requires many steps so that I can make the effort to exit my house. It is exhausting, but you know me, it is all worth it to keep things as “normal” as possible for Alex.

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6 Responses to ““When the mind is backed by will, miracles happen.” unknown”

  1. margie Says:

    Joanie,
    You’re sooo strong. I love you! Margie

  2. Audrey Says:

    Hello Joanie, I continue to read your blog and keep you in my prayers. Your family is special to me. Love you, Jim and Alex

    Audrey

  3. Linda Kirsch Says:

    I’m continuing to send you virtual hugs. You are a strong, brave woman. You’ll have a wonderful time on your cruise and the sun will shine every day for you.

  4. Tara Says:

    Sending love and prayers for you and Alex and Jim. Love, Tara and Kirk

  5. terry fierle Says:

    joanie…have a wonderful trip. i have never done a cruise. i would love to hear all about it when u return. love u,

    terry

  6. diane peters Says:

    I love you Joanie! You and your family will have a wonderful cruise and I can’t wait to hear all about it! I know there will be plenty of stories you’ll want to share! Keeping up with “several times a day” prayers for you!! xoxo

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