Out of the fog and into the questioning phase

Don’t get me wrong, I love my week of freedom. With the clarity brings many questions as far as my aches and pains. Is this pain cancer or just gas? Is this itchiness a reaction from chemo or a new weird skin disorder? Is the increase in movement causing my new fatigue or is it the cancer? or is it my blood? All these questions just bring more frustration and the desire to have more weeks of freedom. Why is it that I still count down my hours of “acting fine” until the time I can sleep? Is the cancer making me so tired? Is my body still fighting much harder on the inside making me so tired? I can question the questions, but realize that it doesn’t help.

Then, my week “off” proved to be a week of cancer job organizing for the potential visit to Houston.  The main plan involves getting my chemo on Halloween. I am still not sure if I am upset about the timing or the magnitude of what is now involved since I had that bad reaction. Since none of my doctors advised me to stop planning for Houston, I had to organize Alex’s school and schedule which seemed like an easy thing to do. Then, I decided since I would be in Houston, a “second” opinion would be good at MD Anderson. All I can say again is I am glad I am not truly in “crisis” or sick like I was from my cancer because it took me a full week of hours and hours of effort to obtain an appointment. Again, I think of all my grey faced warriors and wonder how the real cancer patients do it?!

Then, comes the potions and pills before the chemo plus the blood test and possible outcomes and transfusions. All this requires tons of planning on my part and tons of follow up. How do people who live with cancer work a “real” job? The planning is not done because once I will be given the “go” for leaving for Houston on the 8th, many other things will have to happen. I never like leaving things for the last minute, but I have no choice. At least, I am somewhat familiar based on the trip to Europe except this flight will require a mask. (flu season) I am reminded by my docs that I am only left with one antibiotic to use which is in the hospital if I get sick again. I get it.

So, back in 2010, I used to have my chemo nesting mode, but now this new “normal” leaves zero nesting time and only truly the focus on the day and what we need to do to make this all happen.

I read a new study that came out about patients who live with cancer should be reminded that there is no cure and chemo is possibly prolonging their life while at the same time causing stress on your body killing the good cells along with the bad. I think these doctors don’t know what they are talking about! Most patients are not in my mode of living with cancer. I know I wouldn’t want to be reminded about the reality. I also know my fellow patients some who are on the pity pot or really do have little time left would rather focus on the day, the now, and the moment. I would rather these doctors focus a study on more important things like nutrition or exercise or even attitude to calculate PFS (progression free survival). We are all different and each have our own method to this madness. There isn’t a right formula as I have adapted mine to meet my goals each time. I do wish I knew a magic formula. Until then I will still follow what I know to be true, live for today since we do not know about tomorrow.


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