I’m a ROCK STAR!

It has been a crazy few weeks. Like childbirth, I have some moments of clarity, but last week at chemo I remember nothing. I get flashes of memory like a slide show playing in my head: me brushing my teeth in bed, wheelchairs, crying, talking to my doc at all hours, not finding my voice. I apologize if some of this is a repeat since I don’t even remember writing the last post!  I was in the ER, had numerous visits to Hoag Irvine and UCLA with wacko meltdowns happening left and right. I was unable to eat solid food. My only concern was that I wasn’t belligerent or taking frustrations out on staff. I wasn’t, but I was emotional screaming that I didn’t want to die among other choice words. All my fears exploded out of my mouth like nothing I had experienced before. I do recall that back in 2010 with my “debulking” surgery I lost 3 days and watched numerous Netflix movies none of which I could recall. The combination of pain and fluid (ascites) grew rapidly and caused me not only fever, but delusions of who knows what. Besides the fact that I couldn’t wear a bra and had to have an emergency purchase of jumbo old lady underwear, I was “high” on steroids and narcotics. I do not make for a good drug addict. I think I did tell Alex numerous times during this crazy period, “say no to drugs”. If I sent you a crazy email, ignore it or chalk it up to my drug induced state. Now, I claim to be a rock star which I will explain later, but really it is you, my family, my boys who are rock stars. I do not know how Jim did it every day, every hour, and remained positive, calm, and was my voice and my brain during every medical visit. He demanded a fast way of getting pain meds for me and held my hand even though I yelled at him and even told him many times to “stop talking”. I admit a drugged me is not always a nice me. I do not know how I sent Alex to Camp Kesem, a free camp for kids who have or had a parent with cancer. I don’t know how Alex my brave boy looked into my eyes every day and told me that I could do this and everything will be all right. We had an intercom system using the home phone and I know I drove my boys crazy. My requests were illogical and often made no sense. I talked hours about nothing and everything. Then we found out a cancer buddy who has similar diagnosis, treatment, and ascites went to hospice. They could do nothing more for her. My doc never told me that and calmed my fears with each and every new idea.  He is on the NEGU train and his face said it all.

During my draining procedures, I felt the learning curve having never had the procedure before since I was always on “mission cancelled” either too dangerous or my fluids were a bunch of small pockets which prevented draining. I knew this wasn’t the case. So, my rock star husband and I went to UCLA where my doc came and grabbed my hand, but I saw the fear in his eyes. I was scared too. At UCLA, it is a one man show or should I say one lady show. She also must have had big lunch plans as she wanted to get the process over with. She was insistent if I was in pain she would stop. Jim knew I was in pain, but I put a smile one because I knew we needed all these vials of samples filled and sent off to various companies for analysis. These would give us possibly some answers of what these cancer cells are both genetically, mutation, and how they would respond to chemo. It would be better than the continual playing of treatment roulette. What I didn’t know at the time was that this procedure called Paracentesis didn’t have to be so painful. Her pressing and prodding looking back was insensitive and lacking in patient centered treatment. She must have had an important date or golf game. Jim kept asking questions and she hated him for it. I didn’t care because I needed to know too. What color should the fluid be, what is the foam, what are the pieces floating etc…She wasn’t nice, but did the process. By the way, besides the guided needle catheter being about 6 inches long and not feeling as much relief as I wanted, I was able to stand after the procedure because before I was doubled over. Jim made every effort in trying to ask more questions and take care of me. I was not helpful. We had to take one sample to our doc who would fedex the sample. The rest we had to rely on this lunch date gal and her inability to focus. We later learned the samples at UCLA were messed up. Was it due to lack of refrigeration or improper handling or urgency of lunch date, we will never know. All we know is the small amount that went FedEx was fine, but the UCLA is still today a mystery. My life, my treatment depended on it, but that date sure must have been important. It was out of our hands.
The draining procedures continued at Hoag Irvine and Hoag Irvine ER. My doc was even surprised that the lunch date gal barely took enough since 3 days later, I had about 7lbs of fluid removed. The ER visit was necessary as my lungs were compressed from the fluid and my bladder which is supposed to hold 300cc of urine was holding 800cc. I couldn’t urinate despite my efforts. I became delirious. Never before had I experienced such pain. I gave into the morphine and oxy and a pain patch which delivered the narcotics every hour. At Hoag Irvine, it was a professional show with an interventional radiological doc, 2 nurses, and an ultrasound tech. Every move was made for my comfort. Yes, I was poked many times so I had a constellation on my belly. My Hoag Irvine team was there to hold my hand and much more. Besides all this, they knew how to handle samples and I was the priority. Yes, I was wacko there too.
The next visit was to UCLA as the fluid kept coming back fast, too fast for draining. My doc came up with a chemo combo of Zaltrap (known as aflipercept ) and docetaxol. Here was where things got really foggy. I have flashes of nurses crying, staff crying, my doc with a beat red face. I knew it wasn’t good. The gave me tons of steroids to prevent an allergic reaction mixed with my pain potion. This recipe was a combo for crazy Joanie. I was wired or so high I couldn’t sleep. By the way, my doc also prescribed some pot pills, but many votes were in and against adding these pills since I was so out of it already. This was where I lost days, but remember some dear friends delivering puréed soup which was my doc’s suggestion. I watched a lot of TV and don’t remember any of it. I watched my NEGU video over and over again. Alex watched it too and said, “mom, look at all these people who love you, you can do this.”
Flash forward to this week Monday where I woke up 4 lbs lighter in one day. The chemo combo was working. I could walk. Talking was still TBD. I was weaning myself off the narcotics. Then, Weds came the visit to UCLA for more tests for a possible immunotherapy trial, but there have been so many mistakes along the way, I will believe it when I see it. I do have flashes of memory that I told my UCLA team about the factory stories. Of course, I was so freaked out in the waiting area on Weds that I came there without hair. The waiting room was filled with the typical grey faced, skeleton, bald women who smiled at me and looked at me like I was crazy. I was welcomed like I was one of the famous that come there with body guards. No one could believe it. They told me I am incredible, a miracle, crazy, and they loved what they saw. Nurses and staff yelled, “you’re back!” I knew it too. Of course, I cried, but these were tears of joy.
On a side note, I have to mention that CVS tried to kill me with an error in prescribing Oxycodone which said to take a teaspoon of pills. Once I was semi lucid, I called CVS complained and did my usual voice for many. I never liked CVS and have gone to Walgreens because of smaller mistakes. Of course, this was escalated to pharmaceutical board because they first gave us an empty bag and charged us. I am still wondering about the staff at CVS who may have sold my oxy on eBay or on the streets of Aliso Viejo.
I also have to mention that I have participated in twitter chats to help oncologists help their patients. I now have the hang of twitter. Even in my foggy state, I was brutally honest and kept to being the voice of many. I received many thanks from gynecological oncologists around the world! Gotta love the internet.
I gave up momentarily on the message boards, not because I didn’t want to help. I had to focus on myself. This week, I went back to answer the many questions since now I have reached 23 protocol since 2010!
Cancer sucks. On our way to pick up Alex from camp, I learned that another one of my virtual cancer buddies who I have helped passed away yesterday. She had sent me a message during my drug induced days that I never answered and now she was gone. Again I tell you to hug your kids, listen to them, find your sunshine and make the most of each and every day. Yesterday my sunshine was picking up Alex from camp. He ran to the car smiling. I opened the car and did my version of “running”. He grabbed me and never had hugged me tighter and said, “mom, you are better. You can walk! Wow! I missed you mom! I’m so happy you are better. I was worried.” This was followed by a story from his unit counselor telling me about Alex rock climbing and making it to the top. His counselor’s best moment and mine too. Today is now. I am so happy to be alive!
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