Archive for August, 2014

Who Wins Wheel of Fortune Cancer Edition?

August 26, 2014
Yesterday, as we pulled in the driveway of UCLA, I started getting the associated nausea that often happens with cancer patients. I took meds of course because there is nothing worse than being nauseous before you get any drugs. When I walked in with all the treats, I was treated like a rock star once again and called the miracle girl. I must say I did play the game of recognize the famous celebrity in the elevator who happened to exit the elevator on the same floor. This was an actor in the show Extant with Halle Berry and also in Wolverine and Lost (Darma initiative leader). He was trying to be in disguise with hat, unshaven, and sunglasses which he had to take off since he couldn’t see. The elevator was full. I have great facial recognition (name maybe not) and he knew that I knew, so he just smiled. He did not go to oncology so I really had no scoop. With my new miracle girl celebrity status, I was welcomed by another favorite nurse. Yes, all UCLA nurses are my favorites. He is one of the nurses you want if you are in a clinical trial. His attention to details is meticulous. My blood counts were good except for the red, so this explained my ghost look as Alex calls it. I didn’t mention the hand and foot syndrome that I conviently had now. I didn’t want anything to prevent me from getting in this trial. My nurse tells me this drug has hardly any side effects and has been effective in melanoma. It is immunotherapy so it works by activating your own T cells to kill the cancer. Unfortunately, it takes 8 weeks to start working, but I won’t let any fluid grow to the point I was before, plus I honestly have my team of Westwood nurses and staff who have my back. Each one verified and double checked every step of the way with this new trial. Each 15 minutes, my vital signs were monitored, plus PK (measuring drug in blood) plus urine, plus EKG, plus other blood. I was encouraged to drink a lot.
Then, the doctor evaluation needed to happen, but the doc was in the other building. I decided to go alone with the study coordinator.  Who knew I would have entered the “Who wins the Wheel of Fortune of cancer?” Meaning  who in the room has the worst cancer prognosis, treatment, or winner of most side effects. The room was filled with typical cancer patients who were skeletons, but one had a miniature dog on her lap. This started the riots before the games began. The lady to my left started yelling that she had a compromised immune system, so why was this dog in the waiting area. She asked me to go and complain. I realized that I was 5 minutes from my next set of vitals. I knew I may be fired if I didn’t follow my team of nurses instructions. So, I decided to speak for this woman and asked about my “turn”. I was told that my nurse at this location was on a smoke break?! I addressed the dog issue while others started the yelling about this dog. I was happy that Jim didn’t come since he is deathly allergic to dogs and it would have been a good way to start our vacation. Soon, the dog was removed. Then, the games began. I counteracted the negativity and a queen Debby Downer who has had cancer since 2006 and nothing has worked. I pointed out that she is still alive. She kept with her negative comments and my positive team gained momentum with Melanoma, Breast, Leukemia adding their counter positive moves. This DD could not be beat. Finally, the nurse called her and the Bakersfield Leukemia told the nurse, “watch out this one is very special.” Then, the riots started with yelling who has waited the longest. I heard 3 hours, 2 Hours, and now I was past my deadline too. They voted for me since I won the worst cancer, but had best attitude to go up to the front and ask what is the delay. I heavy accented nurse yells, “JUN Teeman” . I stood up and yelled, “I won”, and their was applause. Unfortunately, it was for John Teenan or something like this. I was told to sit down. Then, my turn arrived with my smoke break nurse who smelled as if she just lit up a cigarette. YIKES.  Lung Cancer was not happy about the odor especially since she never smoked and was a chief dog complainer. I got applause and left the game. While it was fun playing, I realized how important it was to work “the crowd” and give them sunshine moments even when they were in frustration and much despair.
While I waited for the doc,I recognized his new fellow from Cedars. I never forget a face. He introduced me as if we were old friends. I chimed in that we were tight and go way back. Then, doc turned a lovely shade of red. He told me I needed a brain scan that they forgot to have me do prior to the study. I will do it next time and I can do it at the location of my choice? Hoag please!  He explained to me no ziplines, no sword play, no craziness on vacation and stay out of the sun?! I laughed since Maui is not the best place to avoid sunlight, but it told him hat, sunscreen and shade will be my choices. I asked a bunch of questions,but he didn’t really answer since I will be joined by several other ovarian women who will start the trial this week.
Back to the other building where they were going to send out a search and rescue party. I noticed that there was a film crew in the infusion closet. What? I asked if it was for a reality show and the guy next to me said he would choose an alternative reality. No one knew what it was for, but my nurse was now a celebrity. We joked that it was for TMZ. The process continued too long and we were stuck in traffic.
I didn’t sleep that great from excitement, the rash growing on my hands and feet, and now the expected immune response where all your lymph nodes in various places of your body giving me jolts of mini pain. I think that this pain is good, since it means the drug is trying to work.
I’m going now to be with my boys and find lots of sunshine even though I will look for shade. Enjoy these last summer days! Find your sunshine and remember today is now. Don’t worry about the little stuff.  With school year starting, don’t get caught up in the drama of any kind. Just enjoy and appreciate those moments with your kids even though they can be Meanagers. ALOHA!


August 22, 2014

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!


August 16, 2014
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!

“Send the sunshine down my way whenever you call my name” James Taylor’s Blossom

August 7, 2014
I really don’t have the words to express my appreciation not only because I’m on heavy duty narcotics, but emotionally tears of joy fall so easily now each time I receive an amazing message whether Facebook, text, or voice. I have to laugh way back when Jim told me to sign up for Facebook to see what it was all about. My connections to childhood friends, high school friends, new friends, acquaintances, nurses, doctors, researchers, and family both near and far have provided me the best support group who motivate me in my darkest times to keep pushing. This virtual support group is something I highly recommend for each and every cancer patient.

These past days I was reminded of the NEGU video
Check it out here
My favorite teen motto song of mine in high school, James Taylor, Blossom. You see I was big on spreading sunshine even in high school!
I have to honestly say, I have had more melt downs these past few days.  Mostly due to severe pain and being behind the fast growing fluids. In the very back of my mind, I knew I could take control, but in the front of my mind clouded with pain I couldn’t find the answer and panicked. I called my doc more times over the weekend than I ever had since 2010. He came up with a plan. I had my boys with conflicting cheerleading messages which I only lashed out my frustration on them. All was resolved with a plan to control the pain on Friday night and go to the ER on Saturday.  So, 7lbs fluid was removed and I promised to not let things get this bad again. Luckily, for my Rockstar hubby saves the day by not listening to me and knows the pain just by seeing my eyes.  Things were in motion. I love Hoag irvine and for many personal  selfish reasons, I will NEVER have that procedure done at UCLA.
My days have been in bed, resting with pillows, and focusing on being comfortable. My doc tells me not to worry about food, but remain hydrated. I rest and find my sunshine in all your messages and listening to Alex’s piano and trumpet.  Plus a bunch of silly TV shows help put me to sleep. Today I went to UCLA Westwood. They fit me in even though they were full. There is something to be said for entire staff and nurses welcoming me like an old friend or family member. Several I saw had tears in their eyes. Of course, my emotions took over. I realized that to be comfortable, I had no wig, comfy clothes, grandma undies, no makeup, BUT earrings on and I was one of those patients. I still don’t feel bad for telling those to get off the pity pot, because I see how their physique is and they should be getting dressed for the closet -no PJs! I was that patient, grey faced, thinner, bloated belly. I looked at Jim and his eyes were watering. Since we are telepathic, we decided none of that. My doc walked in and said, “okay okay,okay (his version of Matthew McConaughey’s all right, alright alright but in a slight German accent) This meant deep breath and let’s do this. So unknown to me in my drugged state, we began with much premeds, targeted drug and chemo. A bit of a hammer, but sometimes you need the hammer.
Here is what I know:
I am so proud of my boys who handle each challenge and my outburst with positivity and support.
I am in unknown territory for cancer. There is no cure for this cancer and only treatments. This means that docs have no answers and no one does.
I continue to remain hopeful and determined, but this path is not easy. I must continue to surround myself with positive friends, family, and even strangers. Emotional vampires are not part of my medicine. Seeking sunshine in each day is what it is all about. Knowing today is the most important day and I may be more focused on moments, minutes or seconds, but I’m going to make them count. Find your sunshine!


August 1, 2014

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.

On Monday, Jim and I took the drive to UCLA for my scan. Besides what we were both experiencing what is commonly called scanxiety, I was physically unable to sit in the car. I could not bend, sit, move in any position. I could barely whisper a word since I later learned that the fluid compressed my lungs. It wasn’t possible to hide the pain from my boys. Whimpering and tears falling were not the music we wanted to hear for 3 hours while Jim drove us. I felt horrible for Jim having to try to drive in non stop traffic, passing multiple accidents, and hearing my whimpers. I tried every trick to take myself to another place, but gasping for air made this more challenging.
Of course, my journey has had its share of encounters of unacceptable healthcare situations. Remember the blood letting a while ago with one nurse not willing to do her job at a pet scan? This UCLA scan exceeded that event by a landslide because all 9 staff members (some nurses, technicians, and admin) all failed at every aspect of their job. I have given up long ago about healthcare workers enjoying their jobs. I am a firm believer of always informing managers when anyone goes above and beyond to show compassion and care. I do have low standards in this regard, but I have a zero tolerance with any healthcare worker who is not doing their job and impacts the standard of care and my treatment. Without having to re-live the entire ordeal, the highlights include lack of instruction or care for drinking contrast, lack of care for any of my allergies to tape and adhesive, improper access of my port including spraying disinfectant in my eyes, dripping down my neck while I had to sit like that the entire scan (imagine having an itch on your nose and being unable to scratch), and to top it off was the nurse who responded to my concerns with, “I’m only the nurse” and yelling angrily when asked about proper instructions about drinking barium “beverage”, “don’t take your frustrations out on me.” The unfortunate result of this scan is that the lesion that grew in my pelvis was not lit by contrast and contrast did not reach the lower bowel. Now, if I approached my scan like I do every aspect of my treatment, I would have found out how much I should drink, the timing of the drink, and the entire process, but since I am not a fake scan technician or even a fake nurse, I never “learned” these details because for the past 4 years a scan is a scan is a scan. This was not debulking surgery. It was supposed to be simple as far as procedures go. What was my sunshine moment for the day? Talking to the patient advocacy at UCLA and Director of CT who assured me this would never happen again to any patient.
I saw all the images the next day with my doc. Also, prior to the scan and horrific drive, I called my doc who had seen a photo of my belly (we sent via email) and begged him to have me change procedure to Monday. He made a lot of effort, but sometimes things are out of his control. The fluid I had seen on my scan was in every area of my abdomen surrounding every organ below and above. The entire cavity was filled in days.  Thank goodness he tells me I never smoked and was not obese. Good, 2 positive things! Also positive is that I have no metastasis in lungs or outside the abdomen. It is difficult to be positive given this is the worst scan I have ever had since my diagnosis in 2010, but have to say that I’m happy to be alive. Perspective is what it is all about and focusing on the moment, making the most of each day, AND not sweating ANY small stuff.
Tuesday came for the procedure and I knew I had to be in a better place for this process. I also knew that nothing could be as bad as Monday plus this was an outpatient procedure. My wonderful doc was there waiting for me, grabbed my hand and told me I will be able to breathe and get relief. At that time, I had no idea what the scan showed. We looked at frame by frame of the scan after my procedure. Procedure had the usual high level of competence expected at UCLA plus compassion and understanding, a plus!
Now, it is Friday. I’ve had a fever since Wednesday. I’ve learned that all this fluid pressing on my lungs can cause these pockets to possibly become infected. The trick is to avoid pneumonia. Not that dreaded illness…bad images appear in my mind from May 2013. My doc wants me to get drained again Monday, so here goes that effort. Tuesday I’m scheduled for procedure LOCALLY!!! Here is what I know: I hate that this has caused me so much down time. I’m in bed unable to take even multiple trips up and down the stairs. I hate that this impacts Jim’s work, Alex’s every day fun, and has caused me to break dates I’ve made for our family. What I hate the most is that my big plan for daily life is to always be as “normal” as possible is greatly impacted again. Even though the normal has changed, I am sad with this situation. What I also know is that I’m a trooper, more than a trooper with a high tolerance for pain, and I know how eating is important even if it takes all day to eat a bowl of soup. I also know that I have all of you who continue to cheer for me, pray for me, send me great messages in text or email, and I’m surrounded by love. I know NEGU and I know I can find sunshine in each day even in these days. It can be the photo you send, the message, the text, the music Alex plays, the laughter of my boys rough housing. These sunshine moments keep me motivated. Please I encourage you to listen to your kids, the sounds around you, and appreciate every moment. Don’t sweat the small stuff…it really doesn’t matter! Take it from me!