So, I partied like a Rockstar and paid the price the next day. I guess I forgot that when you haven’t moved for weeks, then dancing is probably not the best idea. Plus, when you have a 6 inch catheter poked in your abdomen 8 times, guess there is some “recovery”. You know me. I am used to bouncing back fast, so when things don’t go my way, I tend to get frustrated or ignore the signs of something isn’t right. Since I had the cancer “liposuction” I think all organs inside were shifting around. I guess I had to remind myself that just weeks ago, my lungs were compressed, bladder stretched beyond max capacity, and intestines smashed with all the 15lbs of fluid. So, I ignored the signs of feeling like my bladder was going to fall out when I walked. This was a new sensation of all my abdominal organs falling out with each step. Of course, I ignored all the aches because I was and still am “high” on life. My “high” on life attitude must exude some positive energy force because I’m getting some really strange reactions like UPS guy giving me “high five” although I think he wanted to hug me?! The Walgreens and druggist staff practically jumping for joy when I picked up my drugs. I know there was some type of invisible positive force since it even worked at Walmart where you really need to be in costume to get any attention. Overall, I was so thrilled to attend Kayla’s bat mitzvah that I was driving my boys crazy with excitement. Of course, with the excitement came the surge of emotional joy which brought tears. This was confusing for all seating with us in the same row at the Temple except my husband who just smiled and held my hand. I know he was jumping for joy too. He kept telling me over and over how happy he is to see my lizard baby gone! Yes, dancing wasn’t the best idea, but gotta say despite my lack in dancing skills which can be verified by all my family members both near and far and anyone who knew me in Club Med days, I was going to dance no matter what. Alex even danced with me laughing the whole time. The best part was seeing all the kids all grown up with their bigger than life questions including some awkward ones. Every moment I cherished. Of course, the dancing created some stabbing shooting pains. I decided on Sunday to give into the drugs to recover. Yes, my body was yelling at me, “okay crazy high on life lady, stay in bed and stop moving so your organs can go back to where they live.” I am so happy to have a pharmacy at home with a variety of narcotics. This way, pick a pill and no more pain.
The week continued with operation Brickshare. Thanks to all who supported this adventure for Alex. Jim and Alex worked so hard to get everything organized for delivery of the 3000 school supplies, New Legos, and Brickbots. Alex says that if he was able to drive he wouldn’t need any help. He is truly amazing and the stories at each delivery site were enough to keep me even higher than high. Who needs narcotics! Alex is so passionate about this project and seeing those homeless kids in the shelter and visiting the organizations really put things into perspective for him. He explained how walking down the street is dangerous in those areas where drugs and gangs are everywhere. He also told us that having zero school supplies is one thing, but these kids face challenges each and every day regarding things that he takes for granted. He kept saying it is amazing that these kids are smiling and happy and want to succeed despite all the challenges. Even though a couple of weeks ago at Camp a kesem where having a mom with cancer seemed so horrible, frustrating, and unfair, this project put his mind elsewhere. Don’t get me wrong, he still has his moments especially when he has his analysis paralysis where he tells me his fears and how angry he is, but he also tells me that he knows how hard I try to be the best mom for him and that I’m the best mom. He even said I am better than many moms who don’t have cancer! He also reminded me of where I was just weeks ago and said, “Now you can drive, walk, and do most things.” True, nice that I have both Alex and Jim to remind me daily to slow down and not to get frustrated.
Of course, frustration is the name of the game in the cancer job. So, while I was defogging from pain meds, Jim was following up on the mystery of the sample taken from UCLA and Hoag. Yes, UCLA still seems to be a mystery. Maybe when they figure out where and what happened, they will solve the mystery of where my missing uterus is. Remember way back from a scan at UCLA instead of noting that I had surgery, they said uterus was missing like it was lost! Jim continued to follow up on new immunotherapy trial which we found out there was a hold up on insurance. Remember you can’t really be in a trial these days unless you have insurance. Just delightful! I had to be clear minded so I could spend 2 days of over 4 hours on the phone begging for my life and explaining to insurance that old trial didn’t work, plus I would cost them more money since I would have to have all tests re-done for new trial unless I start on 8/25. It all has to do with the last time I took the trial drug for the starting date. I ended up giving up and had to wait for Tuesday to get UCLA involved. Again, what do the sick people do or what do people who live alone and don’t have a Jim calling and sending messages to each and every person/doc/coordinator. I used to claim I was an organized person, but now admit that I do have chemo brain and a withdrawal from narcotics brain does not make for an effective communicator. Thank goodness for Jim who has each and every detail organized. Unfortunately this means that he is always one step ahead of the rest of the people. He read the protocol, he talked to the researchers. I may have been talking, but think I only mentioned how much I hated the factory. I am not a good druggy.
Finally, insurance approval and next up scheduling. Okay, here we go again. Lucky Jim read the protocol and made a list for me to guide me through what to ask next. I am still Dory in Nemo, so every 5 minutes Jim would come to my desk to remind me to send the email or call. Once appointment was resolved for Monday the 25th realizing that first dose of drug requires monitoring like last trial, but there are many conflicts of info like pre meds or no pre meds. Of course, I had to discuss with trial coordinator since the dose recommended was enough for me to either be on “crack” unable to sleep for days OR cause me to sleep for a week. Yikes, clinical trial stuff requires a whole new level of cancer job follow up. I guess it would be easier to be the patient that just says, whatever you say doc. We know how that works. Those patients most often don’t survive. In this game of survival, you have to stay on top of things. Despite my booked appointment, we are still nervous of what will I face on Monday. Out of my control, live for today, live for now, did all I could do.
Last tidbit was the cancellation of my chemo which got rid of all the fluid. I am unable to have this before the trial. Of course, this was cancelled without my knowledge and lucky at UCLA Westwood I have many who have my back, so they gave me heads up. I called clinical trial coordinator even though my oncologist understood from protocol that chemo was allowed, this wasn’t the case. I had to agree since there would be a possibility that my counts would not be good OR I would lose my slot in this immunotherapy trial which is something new other than chemo. If it works, it would tell my immune system to kill the cancer instead of what it does now which allows it to grow and grow. The balance of this is that we know that chemo worked, so I have to not live in denial and monitor my weight, symptoms, and avoid 15 lbs of fluid growth. It is a balancing act since you have to allow time for things to work.
In the meantime, I will get my first infusion for 6 hours on 8/25 and leave the next day for MAUI!!! Maui for one week is bound to be healing and my boys need this vacation just as much as I do if not more. It will be great! Time off from cancer job. So, I won’t be posting photos on Facebook, but have set up a blog which you can check. I will post photos and adventures there.
For many of you school has already started for your kids and you are caught up in the new chaos of being a driver and juggling your regular jobs. I know it all seems stressful. For those of you who have a few weeks left before school starts, you may also feel overwhelmed too. Believe me, I have those silly forms to fill out too and I barely remember my own name now. Just a gentle reminder that all this chaos, driving from place to place, and making lunches once again, are the small things. Honestly, your 2nd, 4th or 7th grader is not going to remember the homework assignment, but will remember when you played “hooky” and walked to your park or the beach or just hung out and got an ice cream after school. Please focus on the small moments which can be big moments because today is all we have. Today is NOW. Find your sunshine. I always to find mine, even in my crazy days. I know you can find yours. Until later…ALOHA!
I have now found myself in a place that I never wanted to be especially just a week or so later surrounded by a circle of love and friendship along with far away friends and family holding my hand both physically and virtually. You can only rationalize symptoms and data for so long and I knew on Thursday after my doc’s message that things were not going as expected. It is a scary place to be when one moment I can hike for an hour and the next day I am unable to waddle up the stairs. Appearing to be pregnant with nothing other than cancer is also into a very positive reminder of the situation.
The factory was still the same circus act although a bit improved for me since I had one of the happiest nurses. It was a long day that only once did I have a slight panic and needed to get air. I have to say that they were trying. Small changes happened, but complaints from the nurses center ring were heard. We cannot expect changes to happen overnight. Hey, someone even asked if we had kids?! AND asked how I was! All I know is that I made something happened and I will continue to try to change the factory for the better.
Here are some messages of NEGU from myself and Stuart Scott. Find your sunshine today!