My rock star husband continues….

This post is dedicated to my rock star husband Jim who really defines the NEGU attitude, plus he still looks at me with the same loving eyes even if I have my wig on crooked, even if I live in the toilet, even if I have no eyebrows and thinks I am beautiful no matter what. He sees only possibilities and stays calm 99.9% of the time even with Alex acting like a normal teen. Jim continues to amaze me with every spare second night or day, weekends more than ever, he leaves no stone unturned. His efforts with his company, his colleagues, and all the extensions of people who know people have shown us continuous support. You never know what will bring who to the crazy ride we are on. We both know too well what the end road of this disease looks like. If you have seen any recent photos of me, you know I don’t look like a typical cancer patient. So, how can there be no real answers with all these brilliant people all over the world? There are constant tidbits of info which usually confuse me or are more discouraging news of much of the same. The chemo will eventually stop working no matter which one I try and response rates for ovarian on upcoming trials are not very positive. The power of the rock star continues. He sends emails after emails in the darkness of the night with the glow of his ipad remembering each detail. We keep asking and trying other ways to see if there can be any answers. There is the continual frustration combined with so much unknown. We have to focus on how I rebounded from living in the toilet despite the growth of my cancer. We have to focus on the facts that my blood has remained stable (ish), my energy level way better than the average cancer patient, my weight on the heavy side for me and my motivation to stay alive. We cannot think about the tomorrows, while Jim tosses up many balls in the air hoping that one will hit someone in the face. I have sent photos of our family. I have not stopped asking either. Have there been bumps in this process? Oh yes! There was one doctor (neither a social worker or an oncologist) who thought it was her job to remind me that people in my situation die (oh I never knew that?!), do I understand that no drug company is just going to hand over a drug to me, and lastly I should consider telling my 12 year old that there really isn’t anything to try, so he should prepare for the inevitable. I think I was too shocked to respond to this crazy, “what not to say to a cancer patient who has tried every chemo available”.  I did tell her she didn’t know me and she was wrong on every account.  She was not my oncologist or a social worker. She was a “doctor” who wasn’t helping on this path. This is the time to push myself to the front of the mind of all docs I know. I refuse to believe that the next drug combo won’t work. Again, the numbers on what has been studied with these drugs are not what we want to hear. I am not a number and I have taken chemo after chemo only to continually manage all side effects. It is difficult to not totally lose it. Oh, I have had my moments privately in my room, but move on quickly because it helps no one including myself. My goal is to remain as strong as possible and stay on top of things as we usually do. Focus on making most of the day today and what will bring the greatest happiness to my family. My rock star husband won’t give up either. He understands my cancer almost better than I do. He analyzes each trial, each chemo, each idea and attempts to come up with some sort of temporary plan. He does this in every free moment while managing Alex’s tweendom craziness too and giving 150% to his work. I know for Alex that school is his escape just like Jim’s work is his escape from all this reality. It is the night hours that our house has become the night of the zombies. We are all marching around the house in the middle of the night. We often don’t meet, but see a flicker of a light on and off. My escapes are few, but I get glimpses into a reminder of how lucky I am each week when I meet another 20 year old woman with babies and cancer AND her husband just finished chemo or a young man of 30 just diagnosed wondering why this is happening to him. I see the bodies brutally beaten up by their chemo and their cancers. When I go for another test, I always meet a nurse, technician, or fellow patient experiencing what I have been experiencing. I pass on my words of wisdom, my tricks for chemo, my tips for travel, my advice for eating with your eyes closed/nose plugged. I hear about their multiple surgeries, bowels resected, kidneys removed, lungs filled with fluid, and usually the inability to eat much. I am reminded of how lucky I am to have continued this journey with one gigantic surgery and constant control of my cancer which comes from my husband’s constant planning of the next plan. He has hit a wall without a real plan, but sees constant windows of opportunity. He pushes and pushes while I am “dizzy” from my new cancer symptoms. We have to remain hopeful since we know that no one can take away your hope. We have to focus on today. We hope you will enjoy every moment and try to ignore the outbursts of your teens even though it isn’t easy while they are telling you that you are mean, horrible, and know absolutely nothing. Deep breaths every day. Enjoy the sunshine. We will!

One Response to “My rock star husband continues….”

  1. Art Ford Says:

    “We have to focus on how I rebounded from living in the toilet despite the growth of my cancer. We have to focus on the facts that my blood has remained stable (ish), my energy level way better than the average cancer patient, my weight on the heavy side for me and my motivation to stay alive. ” Thank God for this section of the post! Jim is awesome, I know he’s digging hard into the clinical research. Art

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