“What ifs” are natural parts of the cancer battle. We say it silently in our head and heart much more often than we say it aloud…Reality has been forced upon us-occasionally just let us share it openly with you.” Vickie Girard

Since I last had written anything, so much has happened.  I am still not sleeping all that great. I use my early morning hours to acknowledge my fears, tears, and prepare myself and my mind for the day. For the first time, I am afraid, but as always I shove that fear to the back of my mind and take things day by day. This fear has brought about my new “no filter phase” where I feel free to tell anyone what I really think and refuse to put up with the EV, Debby Downer, or general demanding rude people. This has caused some casualties, but I have no tolerance now for the petty, the self centered, the self absorbed, the narcissistic, and the one dimensional people.

Once I learned the new plan, I began my logistical nightmare. Thanks to Obama who allowed this silly drug shortage to stop and forced the FDA to import the drug that in the U.S. were not making because it is not profitable and rather have people not live than make a buck?! I had to first go to Hoag Irvine for a heart study which proved to be the only body part that is working great. The technician commented about my beautiful heart. Before this heart test, I did let loose in the office as a volunteer who decided to tell parents who demanded to interrupt the classroom that would they want me to stop the education of 31 other students for this important message to have “Sally” walk home with a friend? There were too many calls of this nature with, “teacher did not answer my email this morning” because I told the parent she is teaching your child! Some parents asked for my name which I gave freely since I am a volunteer. I also had a face to face encounter with a parent who wanted me to deliver a hot lunch instead of helping a student who fell on the playground and needed some ice?! Oh, yes the student really needed the hot lunch or else they may disappear into thin air? I did spend my other moments at school entertained by the laughter and questions of the 5th graders in computer lab. There is nothing like hearing their concerns and questions of a 5th graders problems to put things into perspective!(also give you a good smile) My doctor phoned to save the day to tell me that my heart looked great and they saw a loving and giving heart in the scan. Good to know my heart is labeled as loving and giving?!

Some doctors we see have so much to offer and then there are the occasional doctors who skimmed my records. So, I guess I can ignore a doctor who is trying to improve my reproductive health since I have no reproductive organs considering I have ovarian cancer?!  On the other side there are my doctors who are fully booked and trying to make the wheels turn except there are the blockades of logistics of insurance and office staff. They still haven’t quite figured out the chair to patient to infusion ratio. Maybe, I can give the problem to the 5th grade math class to figure out? I called to book my appointment for Friday only to be told they were “sold out” or “full”. My office staff friends admitted they would lose their job if they booked me, but because it is “me”, they would book me on Monday without having the proper chain of command. I figured they must have started the flat screen tv give away with each chemo infusion on Friday?! Seriously, again they don’t have room for emergencies…not even speaking about myself, but what about someone else? This isn’t about getting your nails done or standing room only to a Coldplay concert! They shuffled me around phone to phone as I asked what I could do to get the proper chain of command and guarantee me a spot for Monday. I learned that one person handles all 7 doctors insurance processing. How can this be? Alex’s pediatrician has 20 people who do this and they are not dealing with major medical issues! I also learned that I needed to get the CPT code and give it to my insurance, so they can get the right information. I had thought this was going to be an easy call. I was so wrong! Four hours later (no, I am not kidding), I had success. Of course, I had to have someone pick up Alex since it became a crisis. I was disconnected twice and passed to the wrong department over and over. I begged for a supervisor, but was told, “not to get huffy as they could help me”. When I was disconnected, I decided to go the made up foreign language route with a bunch of strange sounds, so I could get connected to a LIVE person! I finally did get a real real person who insisted that she would stay on the line until 9pm East coast time until we got the answers I needed. We both got disconnected together, so she could join in the fun. Of course, with the lovely HIPAA regulations, I had to insist she remain on the line. We finally got a person who said she just needed to talk to my doctor, so I gave her his number and DONE!  With this saga over, I wondered how the old, the really sick, and working people deal with this. I now see why our cancer death rates have not improved. This could be mostly due to people who just say, “I cannot spend one more hour on this” and just go back to the old drug that didn’t work or just get too depressed to even deal with it. This journey ceases to amaze me from the potential errors and insurance to the ongoing issues of managing your cancer job. Once I got this all booked including my chair with a view, I decided to maximize the next days with fun and more fun.

I managed to exhaust my family, but it was worth every minute. Alex counted our activities and said we did 7 things on the weekend. I told him it only partially makes up for all my weekends in bed. We went to Disneyland (picked up Alex early) and forced Jim to wear a birthday button even though his birthday is Weds. We did all the rides we wanted and met nice people in line everywhere we went. Then, we went to Roy’s in Anaheim to celebrate Jim’s pre birthday. On Saturday, Alex had to take his piano theory test for his certification, had an honor band concert, and I decided that the Pac 12 at the Staples center was too far of a drive. I decided to go with the Big West since Jim graduated from Long Beach and they were in the finals. Alex loved every minute of it. Just wait until the Clipper game on Sunday! Then, on Sunday we went whale watching with the Ocean Institute boat. We saw gray whales, white sided Pacific dolphins which we were told are very rare, and an incredible display of more than 300 common dolphins having a feeding frenzy. They were jumping and riding the waves and swimming with the boat. The weather was cold, but sunny. The ocean air felt amazing. There was one of their tall ships out on the sea doing a memorial service. I looked at Jim and he said, ” don’t give me that look.” Instead, I enjoyed the show of the dolphins, Alex’s smiling face, and Jim’s blue eyes matching the color of the ocean. I thought and felt for just these days that I was a mom, wife, woman without cancer.

Of course, skip to yesterday and the reality hit like a ton of bricks. I started my new drug after re-doing the entire chemo order based on what I have done over the past 2 years with pre meds like steroids. I cannot take that much or I am high as a kite for a day without sleep. I was thrilled to see the couple who we met so long ago. The wife has an incredible spirit and attitude. She reported that we were in trouble for laughing. I asked her if we were going to get kicked out. I guess it would be better to join in the moaning, whining, groaning of the rest of the closet visitors. My pod was bugging me. The smells were too much to handle. Lucky for my husband the engineer, he fixed it so I wouldn’t see the tubing or smell the chemicals. One nurse told us she just became a mouth breather ever since she became an oncology nurse. It really stinks of chemicals. They walk around in their hazmat suits while we just get the junk poured in our veins with our spouses and friends exposed to all the fumes. There were some really bad looking patients in the cancer sense. I put my head down and watched TV on my ipad which I proceeded to drop on the floor. “Save the ipad,” I cried. My case saved it! Then, the husband of the couple we like told me to turn off my interrogation light which may help too…I asked him where my air control is like the airplanes have?? He is a pilot and thought it would be a good idea, but commented that whoever designed this place (although new and modern) never had a family member with cancer. So, they brought me the Kool Aid (seriously, it looked like orange/pink Kool Aid or rum punch without the rum!). They informed me of all the fun side effects like hand and foot syndrome (blistering of the hands and feet) which is a common effect among the normal ones that I have experienced. For whatever reason, my blood counts had dropped a lot again. I started grabbing my face to which Jim asked, “why are you doing that?” I told him that inside my mouth was burning including my tongue, so they slowed the infusion down. Overall, I won’t comment too much so I won’t jinx myself, but I am dizzy, dizzier than dizzy and high on steroids with little sleep (up at 3am). I have the usual issues, but who is counting. Instead, I will look forward to some sleep and taking it hour by hour. I have to thank my rockstar husband once again for always thinking of me first and thank him for his honesty, comfort, and drive to always find the next plan is something that makes me feel like the luckiest wife in the world! NO, I am not talking about his driving even though we joke that he is only the driver!

My comment for the day is to be kind to EVERYONE!

“Kindness is a language which the deaf can hear and the blind can see” ~Mark Twain

 

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