Power of the mind…remembering Waikiki 4/2013

Yesterday with the unexpected blood transfusion came the reminder of how miraculous the body is and how powerful the mind is…you see my blood counts were drastically low. They were so low that the charge nurse plus a few other nurses had to come and see for themselves. They were looking at me with many comments that others with these counts couldn’t walk, talk, and would have called 911. I admit that on Monday something seemed a bit off. I decided to go for a sunset walk with Alex at the Dana point harbor. While he jogged along side me, he encouraged me to run which I didn’t or couldn’t even think about. Seeing the sunset and Alex’s smile and  hearing the barking seals, I was enjoying my moment fully not aware that I was a ticking time bomb. Thank goodness I didn’t collapse on the sidewalk. I really enjoyed my moment (gentle reminder for you to find your moment in your day).

Who would have thought that yesterday would have been what it was? Besides my horrible counts and need for a transfusion, I received the result that my tumor marker was 100 plus points higher. (now 200 plus points in 2 weeks). While I sat getting my blood from Washington DC (on a side note think that the DC blood had bad mojo), I just looked at the paper, paged my doctor, called Jim…and sent text messages to family and friends who had asked the status. What little appetite I had was gone, but I knew what I had to do. What surrounded me at the cancer center were weak bodies withering away (some in the bed, some barely sitting up, all hairless)! The nurses had told me despite my growing cancer, I looked good. I realize that this was their version of good compared to what was outside my door. My chicken recipe nurse reminded me of the power of the mind and not to give in to allowing the cancer to invade my thoughts and spirit. Her reminder was that the mind is a powerful thing. The charge nurse reminded me that my body is miraculous. I shoved my lunch into my mouth, barely chewing and not tasting a bite.
I talked to the pharmacist about the next drugs that I am to take. You see if you reach out to unlikely people like the Hoag mixologist (pharmacist), he can provide you answers and prepare you for what awaits you. You just have to be prepared to hear the answer which I was half way prepared. Fear started creeping into my mind, but I continued to push it out. I come home to feel like I had been hit in the head with a hammer only to wait for my doc and see Alex’s smiling face. My doc responded saying he would call at 7pm.
The partnership between doc and patient is critical. My fight for survival is known, but the reality of a toxic drug barely working is now realized. The risk outweighed the benefit. This is a clear case of how chemo can kill you. The hammering of your body with ineffective toxic drugs eating all your blood and barely eating the cancer is the deciding factor. We must stop this chemo and change to the next idea. The next idea is a drug given Monday to Friday and again another drug the following Monday. Plus, doc wants a scan to see if there is an area to biopsy. Both Jim and I took a tag team approach to tell the doc that I cannot go to UCLA every day. I plead for another option which is Hoag Monday to Friday and UCLA on the once a week. For many options besides the driving, this new idea would not work with me living in LA for the week. He agrees to set to attempt to set this up. What most do not realize which I have said before, going to a cancer center for treatment is difficult once a week. It requires a mental preparedness that is difficult to explain. I always said that I would rather go somewhere else to be treated for cancer. The “closet” is a constant reminder of sickness, many on the pity pot, few smiles, and a poor visual reminder of the future of the disease. When I switched from once a month, to twice a month, to every week, I realized how much strength and determination is required for treatment. Besides being your own advocate, I should have added to my lessons learned,  “get into the right head space for success.”
Night time is always the worst time for any household living with cancer. The fear and the thoughts that were pushed to the back of the mind creep to the front. For each one of us, we all have our methods of coping. Often music helps, quiet helps, laughter helps, deep breaths,but often nothing seems to help. Alex is the usually the first casualty who has tried all his tricks even watching late night animal planet to be left with worry. Our new method of fighting these thoughts is me teaching Alex French. So, we begin with the alphabet and some verbs. The funny sound of French words make him laugh and ease his mind into sleep. Somehow this helps me too. I think back to April 2013 in Waikiki when I had the rising tumor marker which was 300 points higher than I have now. The day after chemo in Waikiki, I hiked to the top of Diamond Head. In July 2012, with a bit less cancer, but horrible hand/foot syndrome, I walked across Olympia and the Parthenon. I did these things before. So, instead of having one of my few panic attacks, I focus on this plus the fact that this last drug was slightly working a teeny tiny bit. The next combo will work too. All I need is somewhat stable disease to enter the trial and continue the journey. I know I can do this. I know it won’t be easy. My mind is a powerful gift and my body continues to surprise us all.
In the early morning hours, I managed to schedule the rest of my blood transfusion and my scan is scheduled for Friday. Next on the list is the Monday to Friday at Hoag. We all know how this local doc is not like my beloved UCLA oncologist who will jump to make things happen for me. I am just another number to her and not a priority. The games begin again, but first a shower and a walk (slow walk) on the beach. The sun is shining with a little fog both in my mind and outside. I remind myself again that I am not a statistic. I can climb any “mountain” that I face with the continued support of my smile patrol, NEGU cheer squad and especially family and friends. Again in the words of a very dear friend, “find your one fun thing today!”
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