Taking one for the team and lockdown continues

Being trapped in the house, I have come to realize the benefits having avoided really looking at my house for over 3 years. In recent weeks, I have reviewed piles of papers and found a variety of things gone missing (it wasn’t my chemo brain that forgot them). It was the prioritizing of every day fun to looking at those piles. I can assure you (for those having piles around your house) that nothing critical was found. It was a treasure hunt of missing notes, papers, toys, and earrings…all items that could stay missing. My point still remains to not sweat the small stuff and enjoy the important moments making memories with your family and friends. For me, when I was unable to talk, the fun came from hearing Alex play the piano or his trumpet or listening to his tales from the day. Now, let the talking begin, but I am still to remain away from people. I see the pulmonologist next week.

With Alex’s record breaking tests and projects due in one week, he barely had any sleep. This is combined with his worry about me brought the germ carrier home with a cold. Jim was in full protection mode and kept Alex away from me, plus reminders about hand washing, tissue disposal etc…This led to Jim getting a cold which he says is better than me going to the hospital again. So, while I am almost able to breathe, Jim is a casualty of what you will do for love.

Before the cold, came our visit to UCLA which proved to be very painful now that we have experienced a traffic free drive to chemo in Newport. My “home away from home” was missed in ways I cannot explain. This team of nurses besides giving me the VIP (did the lemon cupcakes persuade them, don’t know?) they give me support that is unmatched. They have seen the ups and downs of the treatment and learn to read beyond my smile and to see the pain behind my eyes. They are like having a bunch of mothers reminding me to eat, take meds, and asking important questions that only come from being a compassionate nurse. They laughed at my stories of getting pneumonia from an orangutan and telling the hospital staff off when they told me I could die from pneumonia. Jokes were made by all about my inability to talk during the bad phase of pneumonia. They told Jim that it must have been very quiet. Unfortunately, the chemo from last week decided to eat my blood and if I was in Newport I wouldn’t have been able to get chemo without a giant fight.  Of course, in UCLA there is an understanding that your blood counts are a fine line of walking that tightrope and chemo must be administered to prevent the cancer from growing. I did get my chemo and mentioned that most likely I wouldn’t be able to get it next week. My doc was preoccupied and I let it go. I have been that patient needing his undivided attention on clinic day during my past moments of crisis. He juggles all the patients of who needs the most help at the moment and he does this well since he is always available to us day, night, or weekend when crisis occurs. So, I let it go and he responded that we will see next week.

Tumor marker down!!!! My goal is to reach normal before school starts. Jim and I calculated it out since most drugs only last a maximum amount of treatments, this should be possible and we remain as always very hopeful. All those years in school studying math (yes, my degree is in math), I didn’t foresee how much numbers would play such an important role in living with cancer.

On a side note, Jim had signed me up for a drug company trial interest list. The drug company asked me if I wanted to be on a panel to answer surveys and questions regarding treatment, nurse care, drugs etc…Since I meet the criteria having the maximum amount of chemo in the shortest amount of time and I am alive to tell about it. I am all about helping others, and when they told me they would pay me in amazon gift cards, I couldn’t respond fast enough. Little do they know about online shopping as a treatment for side effects of chemo? I will not mention the fact that I have ordered the same items multiple times or shipped underwear to my dad for fear they think my chemo brain is too severe to help them discover the answers they are looking for.

I did take time this week to congratulate my doc on his birthday and thank him for helping all his patients, but most of all I wanted a toast to him for just plain ole’ being alive. Thanks to all my cheerleaders near and far. Without you, I would not have the strength I do to ride this crazy roller coaster ride of cancer. Summer is here! Enjoy the sunshine.

To my father, thanks for making continued sacrifices especially when it came to my education and all that traveling we did as a family. Those travels made memories that we still talk about today. Thanks for the continuing efforts for all the grandchildren. Without everything you do, I wouldn’t be the person I am today.  I love you.

To my husband, thanks for being the best father to Alex and always explaining cancer in a way he can understand and handle. Your ability to be the rock for us has contributed to Alex’s successful transition to middle school and his confidence and acceptance of himself, our lives, and living with a mom who has cancer. Thanks for working so hard for us to make all our vacation dreams come true. Thanks for being my rock star and number one supporter. I know without you that I wouldn’t be here today celebrating another father’s day with you. Thanks for being hopeful and strong. Thanks for always looking for the next drug to try and thanks for being a fake doctor. Most of all, I thank you for being you. I love you.

Happy Father’s Day to all those rock stars out there! For those who don’t have their fathers with them, celebrate them!

 

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