“Do what you feel in your heart to be right. You will be criticized anyway.” Eleanor Roosevelt

I am concerned. I am back to feeling like I have cancer…the lack of appetite, the bloating, the digestive system gone crazy, and as Jim says, “the look”. Monday was UCLA. TUES was my MRI/mammogram. The gene mutations I have increase my chances of breast cancer substantially. I was happy to eliminate these 2 body parts from the equation. I explained to the technician about my veins, but still ended up with the drug addict arm. Come on!?! I waited for the radiologist and docs who reviewed the films and was told that all is fine above! Then, Weds we went to Scripps. As we drove along the coast, I felt the weight of this cancer filling our car. Between the sadness and frustration, I was overwhelmed with emotion that my mind could not think clearly. Instead, the usual joking about this and that was ineffective. One day at a time is what I kept telling myself. When we arrived at Scripps, I was greeted with the same friendliness as at UCLA and I didn’t have any treats. Luckily, we beat the mad rush, so by the time we connected to the wireless, my giant box with my vaccine entered the room. As Jim explains, it is like those Russian nesting dolls when they open the giant box. There are the layers of temperature gauges and dry ice. Box after box, there was my teeny tiny vial of dendritic cells. Jim and I were joking that I wanted my cells back. They were MINE! Unfortunately, when the doc and reps for the trial study explained to me that I am merely part of the study not for any data points, but to test for toxicity. Oh Great! Each of these people said repeatedly, “it may help, we don’t know”. I am glad that we all agree to disagree with the hopelessness stated by the drug company. This is not my last resort and I don’t feel that hopeless. As required by the trial and I am sure some liability, I had a very special exam when the doc determined she felt nodules in my pelvic area that were not there before, so these could be tumors, but the PET scan will determine cancer or not. Yes, she said I was bloated and yes, the groin lymph node was enlarged and palpable. I know my body. I cried as Jim held my hand. There was discussion about the next vaccine and Jim joked that we have our usual bowling game on that day. This doc looked at my hand and foot syndrome to declare it the worst she had ever seen, but her age may have reflected what I knew to actually be the best I have seen since my 4th infusion of the drug. She also looked at my chart and was not convinced that it meant that the rising ca125 was a sign that the drug has stopped working. Again, all I know is how I feel. (lesson #425 learned, listen to the signs of your body) This was the doc who said I made it too difficult because I act like I feel great. This was also the doc that while I felt my cancer came back, she felt waiting would be better. Again, I am reminded that she felt the nodules and did such a thorough exam that I must see the value of what each doc brings to my treatment.

So, two nights ago, Alex broke down. With his graduating elementary school, seeing me not feel my best, and being part of this cancer job, he told me he was just too sad for words. Then, for the second time since my diagnosis, sobbed uncontrollably saying, “this is too much, you having cancer is too much and why can’t I just be a normal kid with a parent who doesn’t have cancer” . I agreed with him. As much as I put on a happy face and carry on, he asks questions as he is smart and has always asked us to be honest. Do we share all the details? No! As our counselor recommends to us that keeping things from Alex will only make his mind wander and honesty is best with always a focus on what our plans are and what I will do to fight against my cancer. This works for me since Jim and I always have a plan and maintain a positive attitude. Our success as seen in what Alex has done this year and how he has coped and grown is seen with how we try to keep things as normal as we can. (Cancer with a twist of normalcy.) Of course, when Alex is upset or worried, it comes out in strange ways like his focus we call analysis paralysis on something silly like where is his blue shirt or why a friend joked with him about something he would normally laugh about, is now something that would either frustrate him or cause him to question why a friend would do that to him while his mom has cancer. His inability to see why a child would do certain things is less about kids being kids, but more about why kids don’t understand how difficult his life is as a child of a parent with cancer.

 

My cancer job continued with juggling my blood test at Hoag and Alex’s last day of elementary school. I managed with the help of some very special friends! My family stayed for the rest of the certificate ceremony and I returned to see all the rest of the action. It was an unreal moment and Alex continued to tell me not to talk about it or ask about “it”. The “it” was the last day of elementary school. I tried not to look at the clock for my countdown to my latest tumor marker number. A call from my friends in high places informed me that the machine that does that test was broken and in repair, so there would be a delay. Why on this day does it break? Meanwhile, conference calls with docs at UCLA set for lunch Friday. Tuesday will be my PET Scan to see what the real story is. My tumor marker finally comes back as basically the same number as Monday. I am thankful it did not double. Yes, it is still high or too high, but I am focusing on the teeny tiny positive signs.

 

The conference call was more of the same. Yes, the plan to add the chemo pill which would potentially cause me to need a blood transfusion while on the cruise (NOT A GOOD IDEA) and wait for the scan to determine a change in chemo. I will have to do what I must and focus on some facts that if there was a giant tumor, they would have seen it in the ultrasound. Of course, I am reminded that there could be microscopic mine fields of teeny tumors in my abdominal area. One day at a time.

Summer is here. There is sunshine and smiles everywhere. Hoping you get out and enjoy yours. I will follow my heart to continue what I know to be right. I hope you will too.

 

 

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2 Responses to ““Do what you feel in your heart to be right. You will be criticized anyway.” Eleanor Roosevelt”

  1. Tara Says:

    Sending you and Jim and Alex love, Joanie. We think of you guys often and always stay hopeful for the best for your wonderful family. -Tara

  2. Gina Says:

    Thinking of you and the boys….Love you!!

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