A new “normal” 2014 begins

Living with cancer means that there is never a day “off” from the job for you or your family. So, last week on Thursday, I got one of the drugs called epirubicin (evil twin sister of doxil) which has known cardiac toxicity among other toxic side effects. There is a lot of unknown since this is a single agent at the original high dose that I had 3 weeks ago. Just thinking about it causes the memory of ongoing nausea. Between much fog, I took not one but two growth stimulating agents to cause my bone marrow to produce more white cells, immunity fighters. As this journey has a continued learning curve, I realize only yesterday with my blood tests that I may have not needed any shots, but especially not two. So, while Monday I was moaning and writhing with horrible bone pain, a pain so deep that no amount of massage or touch or drug can relieve it, I was very foggy.  Even with the constant back rub by Alex, I only could whimper continually until Jim forced me to take a brief walk to clear my head from my pain. It did work despite my protests.

With my family visiting, this brings a much needed escape for Alex from seeing me in the fog. He came home each day smiling and laughing and it couldn’t have been better medicine for me. Then, my mom (driver for the day) took me for my blood test and took me for my vitamin C infusion. I know vitamin c helps with side effects, but this crazy middle of the week holiday puts my chemo to Thursday and I fear the magic may not last. Besides vitamin C being helpful for side effects, the knowledge of the nurses are invaluable with tips and tricks but few will actually listen and take advantage of this valuable resource. My mom and I enter the “closet” and I bombard my mom with my emotional explosion of my fears for the day and for the unknown. It is something Jim has heard before and is all too familiar with…my mom expertly listens and provides comfort to me that only a mom can provide. I realize after many tears that this is something to release and move on to live for today and look forward to seeing my sister, bro in law, kids, dad, and my boys for lunch. We also are visited moments later by my co-closet New Year’s eve day cancer partner who has brain cancer and is only 30. I see he has lost weight, but his smile shows me his passion for life and he is motivated. So, I must move on from my own pain and be his cheerleader and remind him that we are not statistics, advise him to value a compliment from a nurse or technician since they see it all. We review our food phobias because for me each meal brings an anxiety that can only be understood by someone with cancer. His mom is there too plus a fellow “port sister” and we discuss balance with living with cancer especially when on chemo. In the back of my mind, my thoughts drift to the pending tumor marker results. I review my symptoms and fear it may be worse since I feel horrible, but don’t know what is chemo and what is cancer. With each meal comes a full blown strategy of what I must eat even though I have zero appetite. What little hair I have is raining on my towel from my shower or just a scratch of my head. My abdominal pain is confusing as I try to remember if this is worse or better than before. I’ve been in this place before except I have not been here with no obvious options and trials across the US which could put me on the door step of any of my friends in the East or Midwest. My oncologist is back in the office and Monday asked me to send results ASAP to know what our plan is for Thursday. I call and find out that my tumor marker is higher by 80 points which may seem like a lot, but in this land of unknown it could be four times that if the drug wasn’t working at all. So, it must be working to some degree and as small as that may be, it has to be enough. On Thursday, it looks like I will get the reduced dose of the evil twin sister. It has to be much reduced for a weekly regimen to stay in my body longer to keep killing cancer cells and also for safety as this is always a magical balance of what you can tolerate, what can kill the cancer without killing you. When I was on the good sister of this drug back in 2012, I didn’t have as much cancer as now, but my tumor marker would fluctuate up a bit and down a tiny bit, but it took some time to work in this pattern. With much analysis paralysis, we can think that the evil twin sister may do the same.
So, now my days are filled with much planning for meals to be consumed in small bites, ignoring the aches and pains that always become much more apparent in the hours before sleep as I try to find a comfortable position to sleep. A new pain in my hands is most likely neuropathy, but I tell myself it is much better than the foot syndrome when I couldn’t walk. I pull out my comfy pants and look at my swollen belly to know the cancer is there. I tell my belly, “bye bye cancer” as if it will move like a growing baby in response to my demands. I forget the many days I had without these symptoms and realize that I can do this new “normal”. There are many who are worse than I am and even more who have lost their battle. I have the support of an amazing family and cheerleaders who remind me every day to NEGU. So, for now I think back to the question of New Year’s resolution and I have only one, the will and drive to stay alive and fight. I ignore the unknown and focus on the laughter, the joy, the living in the now because that is all I know. I look forward to being with my family and enjoying the party my nieces, Sofia and Chloe and nephew Max created. Much sunshine for today! Hope you kicked off 2014 finding your sunshine and not sweating the small stuff!

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