“This time of year is supposed to be happy. Why does this keep happening?” Alex

I knew the reality of the day would happen based on my increasing symptoms from cancer growing. With the growth, there is ascites which for me causes constant pain. So, Monday night I crept into bed with a heating pad, sitting up, and hoped no one would notice. The chemo I took last Weds isn’t working. Even though I knew my tumor marker had to be sky high based on my symptoms, I was not ready to face this reality. It just couldn’t be happening again, so soon. I close my eyes and see all the photos from the video Sue made of the NEGU cheer leaders and am comforted by so many. I am frustrated that I hit my body with such toxicity that all it did was eat my blood cells. I am overcomed by frustration and fear. I have no plan B. When I got my blood done yesterday, I wasn’t ready to hear this reality that my tumor marker is escalating too fast. This escalation consistently matches my increased symptoms. With increased symptoms, it is virtually impossible to hide the pain behind my smile. My rock star husband tells me about his list of ideas and he refuses to give up. He agrees that the days and weeks ahead are not going to be easy not only from my symptoms, but some of the ideas are full of side effects. This can’t be it. There has to be an idea for a plan B. We talk to Alex who just breaks down and cries. He questions the “why is this happening to our family? Why during the happiest time of year?” I remind him what he tells me that we are lucky I am here today. It is unfair. The timing couldn’t be worse. Jim reaches out to as many doctors as we know with hopes that some will be “connected” even though it is Christmas. At the same time, a FedEx package arrived yesterday with an expert opinion from a doc at Dana farber. He had two new ideas, but without the full knowledge of upcoming immunotherapy. I couldn’t bare to read this reality too of a poor prognosis for my future. Jim reminds me to read between the lines and take the good info from this report. We attempt to stumble through the day feeling numb with all this reality. The night has always been the worst. It begins with Alex in and out of our room. By his third visit, he is crying full of worry. We comfort him and remind him that I am strong and unlike many others. The visits continue until about 11:30 when we agree to let him read anything he wants and he eventually falls asleep around midnight. Unfortunately, I become the next casualty with Jim reminding me of this list of ideas. What starts as just a few tears ends up with uncontrollable sobs and a full blown panic attack. I was beyond any comprehension of hearing anything except my focus in being in tune with my increased pain reminding me of the cancer growth and this list of all unknown roulette of ideas. Jim continues to comfort me and I give into sleep.

We wake up to find Alex sleeping on the sofa. He couldn’t sleep. My heart hurts for him as his young mind is unable to cope during the late night. We also get one response from a doc who has always been on our team and an incredible source of info. She is available today to talk to us and help us prioritize the list. Moments later, my oncologist responds that he will respond later to the list, but likes one idea. I read the side effects of this drug combo. I realize that tomorrow may not be the best idea to start another drug combo while my blood counts are so low. I reach out to the email responding that I want what is the safest even if this means a long transfusion of whole blood. With my family’s arrival, I know I must be focused on this valuable family time especially since my own family is breaking. The sun is shining. It is Christmas day. Today I ask of all of you to savor every second with your family, focus on your faith whatever it may be, enjoy the importance of what this holiday means to you, and never forget that today is now. Be thankful, be grateful, and I am thankful and grateful for all of you. You continue to support me and I know how important this is not only for myself, but for my entire family. Enjoy the sunshine.
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4 Responses to ““This time of year is supposed to be happy. Why does this keep happening?” Alex”

  1. Gina Says:

    Love & prayers of comfort & strength for all of you, my Warrior Friend. NEGU~Gina

  2. Jane Moss Says:

    I am praying for you, Joanie, and your family. Enjoy the time with your sister.
    Love, hugs, and prayers to all of you.

  3. Linda Kirsch Says:

    Sending you hugs and love and prayers for strength.

  4. Melinda Gorsline Says:

    Hugs and love and prayers to you Joanie. I think of you always.

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