Back to reality…

I still cannot believe it is 2013. Over the break I had some difficult conversations. One main reason was that I didn’t  realize back in August how bad I was or basically how much cancer was in my body. I was dealing with the now and the moment since I was in so much pain, but forgot to think or didn’t want to think about the reality of the situation. I still don’t know how I did what I did in Europe or how I did what I did for Alex starting middle school. Having meetings with his teachers and answering difficult questions only makes me realize how much attitude and your mind can be so powerful or just my drive and determination pushes me forward to be okay for myself, my family, and my friends. Some friends have reminded me not with words, but with actions how important it is to communicate difficult conversations and continue honest conversations with Alex. Your children are always your children just like your parents will always be your parents. I have written my wishes about all things no one wants to talk about, so if I am too drugged or unconscious then these conversations will help I think lessen the burden. I have set up an area of my Evernote with more details, plus have a binder of legal documents. I have had conversations with Alex about his wishes about middle school and even high school and beyond. He is more concerned with growing facial hair than all this “stuff”. I keep telling him that Jim could go without shaving for days and hardly have a beard, so he should not worry about that. The more I have the conversations,the more it seems like just an ordinary grocery list instead of some very heavy stuff. For me, this takes the emotions out of it. The reality of my cancer still is in the back of my mind.

Wednesday, I asked not only one doctor, but two doctors questions that I knew they didn’t have answers to. They told me there is no “philosophy” when dealing with cancer treatment, but pure science. Based on my cancer, if I stop chemo, the cancer will come back. The goal is to keep the cancer in “control” with the most quality of life. As one said,my horse is still running the race, so no reason to change the course. The drugs which were going to be ready for the beginning of the year have been moved to the end of the year. There was a suggestion to add a drug, but I had already had that drug which caused me to go to the ER unable to swallow with horrible mouth sores. This is why it is important to keep a journal of this crap, but who wants to do that…guess I should log the latest and greatest info.
Wednesday, my results of my tumor marker were not positive. I am crushed as I was thinking so positively that this wouldn’t be the case. I guess my “horse” is now running backwards or not continuing the course we wanted. Now, we really have no plan. How fast will my cancer grow this time? Do I have time to take a vacation? I start my time line in my head for Alex-2 more years of middle school and then 4 of high school. Pretty please I tell my body, slow growing cancer, please partially respond to the chemo. My doctor called me on Weds night telling me that I cannot take a break from chemo as if I had thought that was even an option. I am not completely delirious! We have one more new blood test which in combination with the tumor marker may give us a better idea of how fast the cancer is growing. This test is not back yet. As I entered my fog, my “boys” are hurting. Jim and I didn’t sleep much and Alex woke up at 5 with a bad dream. Alex was begging me not to fall asleep last night before he did, but the chemo was taking over.
Since there are no real plans for next steps, I can just focus on the moment at hand which is just to get through this chemo. I do think back to Europe and how much I did when my body was so “cancer-ified”, so I know I can keep going now. Since I am in my fog, I cannot think of much more right now except going back to bed. I want to scream or cry, but my body needs rest. I will listen and face reality again soon.
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6 Responses to “Back to reality…”

  1. noah linder Says:

    Thinking about you all the time. Digesting any of this is not easy. You win mother of the year award to infinity. I hope you get the results of the second test soon, as waiting is not so much fun. Please tell Jim that I am at his disposal for anything he needs done, errands etc….. . Love you!!!! Amy

  2. Sandra Says:

    And I as well, my dear friend am thinking of you. Living so far from you and not being to do as much as your close by friends makes me frustrated. I keep saying many prayers and staying positively focused that you can defeat the big “C”. I commend you on your inner strength-I hope that your second results will be the positive news you are waiting for. Love you tons!! Sandra

  3. terry fierle Says:

    Hang in there my sweet joanie. U r always in my thoughts and prayers.

  4. Diane Peters Says:

    My prayers are always with you and I will continue to pray that God eases your pain and burdens. I pray for strength for you, Jim and Alex and hope you know I will do anything I can for you. Love you Joanie!

  5. Valerie Gelb Says:

    My heart breaks for you as I can’t imagine how hard this must be as a mother. You also inspire me to quit complaining about the stupid stuff in life and to appreciate the small things as someday the small things will turn out to be the big things! You have positively impacted me and so many others with your honest and heartfelt blog. Thank you for sharing your journey through your blog… I think about you and pray for you often.
    Love,
    Valerie

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