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!

NO REGRETS!

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.

 

http://mauialohasummer.blogspot.com/

 

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’m a ROCK STAR!

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!

FIND YOUR SUNSHINE TODAY!

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!

#NEGU: never ever give up!

July 18, 2014

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!

 

A year has passed since my cousin Margie who was an Ecap (exceptional cancer patient) left us

July 13, 2014

I cannot believe it has been a year. It seems like yesterday. It was really the other day when I was telling my factory tale of clinical trial train I heard her voice answer me.

So, in honor of Margie, I wanted to re-post some of her words which I did post in July 2013.

Here are some of her words to me:

“You’re strong and your fighting spirit will take you far. I BELIEVE in you, love you. After you read this you’ll start to see how often God winks at you.”

“Whenever I’ve gotten discouraged or a little blue, I come back to the teachings of this book. (The Triumphant Patient by Greg Anderson)

I believe you’re strong without a doubt. Keep doing whatever you’re doing. You’re amazing!!! I know we’re going to be old ladies talking about this in 30 years as part of our past…just another bump in the road of life. I love you. Margie”

“Here’s another inspirational book (There’s No Place Like Hope, Vicki Girard) I want to share with you, I stumbled upon it and am reading it now. Your wonderful attitude will continue to help you heal and HOPE!!!

There’s a lot of hope to go around, love you Margie”

From her chapter in the book, Faith, hope and healing by Bernie Siegel, Inspiring lessons learned from people living with cancer.

A  New Autumn by Margaret Shane,

“My once idealistic expression is more soulful and serene yet full of hope and excitement…. At times I was discouraged, sad and worried. However I decided early on that it wasn’t going to beat me, and the gifts that have come from it have far outweighed my actual illness… My faith in both god and myself deepened, I felt like a large net was holding me up, orchestrated with angels circling, taking turns to catch my fall, to help me beat back the fire when I felt it circling me. Those angels are my family, friends, fellow cancer survivors, doctors, nurses, and even strangers….Cancer is scary, but not as scary as I thought it would be…I’m sure that stubbornness and a strong will have helped me over the last four years and will continue to do so…. I see the world with different eyes…I’ve had to let go of some left brain thinking, so that I can open up more to trusting my heart and spirit. Not looking at the “shoulds” or “coulds” but what is right and true for me. I’ve had to honor and value myself like never before….fighting this disease has helped me find my passion for living fully again.”

Bernie Siegel’s reflection on Margie’s piece

“Cancer reminds me of water in the way it has the ability to reflect back certain truths to you…your body is aware of how much time you spend fighting versus nurturing yourself… When you nurture your body, mind, and soul, growth and healing occur within you, …So never stop planting and cultivating your seeds of life, though cancer may been seen as compost, remember how it helped Margaret to find her passion for living her life fully again.”

The world has lost a very special warrior, a cancer soul sister, a cousin, a friend, and my hope is today when you see some beauty in the day you say a prayer for all those fighting to survive because that is what Margie would have wanted. Lastly, I hope you find your passion for living your life fully each and every day. Margie always did that and taught me to do the same.

How to be the voice of many

July 10, 2014

commitment*note: except when it comes to providing chairs!

Being a lab rat at the factory, I have the luxury of being a professional cancer patient with a voice to speak for many. Since I have been in other clinical trials and visited many cancers centers especially in So Cal during the 4+ years, I feel that my observations are valid and true. What makes a difference to most cancer patients no matter where they are in the process of treatment is just a little compassion and kindness which goes a long way. This tiny bit of patient centered care is critical to the successful treatment of patients. This includes the staff at the desk when you sign in, the person who takes your blood pressure, the nurses, and any other staff a patient encounters. Last week, I had the opportunity to see an old friend who happens to be the chaplain at both the factory and closet. We laughed as usual and talked about the factory. Now, the factory has the reality of being the picture of what is happening in the world with the increase in the number of cancer patients to treat. I’ve talked before about the infusion center being “sold out” and unable to make an appointment as if I am getting my hair done instead of chemo. There is a fine line of how to treat and care for the growing population of cancer patients while focusing on the individual. UCLA Westwood does have that balance with the nurses taking the extra moments listening, advising, and caring for each patient. The problem with this care is that this often creates delays for other patients. I’m sure this is a difficult thing to manage, but cancer patients require a different type of care. I know moods and attitudes can change the overall health of a patient. A slight pain becomes sharp and unbearable. A slight concern turns into a crisis. A bit of worry turns into a tearful panic attack. Small efforts can make a huge difference. I know I have complained about the loaded question of, “how are you feeling?” When no one asks, it seems that no one cares. I received a call from the factory supervisor. She completely understood what I was saying and assured me that things will change. At first, she questioned my concern regarding the level of care I was getting. This is a puzzling area as I am getting excellent medical care, but missing the human care. She laughed at the way I explained the factory to her even using the words factory and processing.
This brings me to yesterday. After a very long drive on the 405 with 5 accidents. A drive to UCLA is never easy or simple. Plus, in Santa Monica there is the added search and hunt for parking. Jim dropped me off. I entered the waiting area which holds about 50 people and it was full. The level of anxiety was high and faces were filled with worry and concern. Caregivers were checking watches and making comments. I walked to the sign in desk where 3 people sat head down and not one looked up, acknowledged me (or anyone else), and  no words were said by the head downers. I waited a full minute watching the clock tick passed each second hand. I also used the harsh stare as if they could possibly feel my glaring eyes. I gave up and decided to use the restroom in case I was in the DOD (door of death) room as I refused to use that bathroom. When I returned, I noticed the energy hadn’t changed. In fact, the anxiety level had increased and was almost palpable. I decided to keep smiling and tried to make some eye contact. Somehow, I was called and taken back to the standing room only room. My guide explained the sell out crowd. I added it must be a 2fer day or I should have been informed to BYOC (bring my own chair). I scanned the room with a choice of a chair facing the wall and a nicer pod. There was a group of family with a ghostly patient behind me in a wheelchair. I decided to give them the better chair. While I sat, I noticed the energy in this room was even worse. Not one nurse smiling or making eye contact. A nurse in front of me was committing the violation unheard of in Westwood which is using the stool with wheels to wheel herself from patient to patient. Of course, my first thought was that she had an injury which prevented her from standing. Nurses were talking way too loud and yes, most patients weren’t focused on this, but I overheard one nurse say she was going to lose it. I was still trying to figure out who my nurse was. Finally, I caught one nurse smiling and making eye contact.  It was a crazy circus like atmosphere, but not in a positive way. Nurses were huddled behind their station as if they were going to catch something from one of the patients. My nurse arrived on wheels (rolling from the nurses station to my wall facing chair and I had a flash of the movie Wall-e with people on those floating chairs) and never introduced herself, never explained what she was doing. I knew what she was doing, but that wasn’t the point. I asked her what she was doing and explained that I have been doing this for 4 plus years and I like to know what is happening. Her answer was, “I’ve been doing this for 25 years.” Next, she was careless and blood started spraying my chair from my accessed line. She wiped some of it off. I wiped the rest off while waiting. I kept asking questions and asked what tests were ordered. She told me and I responded that one was missing. Wheeling back to the station, she seemed to be having a really bad day or maybe this was the way she “rolls”. I continued to scan the room seeing more patients searching for nurses, caregivers searching for lunch options, and nurses grumbling about everything until I heard them get on the phone to order their lunch. (Were they all on break?) Now, I waited for my results, but could not find the clinical trial person or the doc or my rolling nurse. I made eye contact with a person standing at the nurses station who approached me and happened to be the factory supervisor. I explained the various situations including my circus act rolling nurse. Her jaw dropped and she grabbed my hand and smiled. She promised she would add my new observations to her email which would be sent to higher factory management. I did remind her of the one smiling nurse. I was left to more waiting until I finally interrupted my rolling nurse before I saw her ordering her own lunch which was obviously a big priority. She told me I need to wait for the doctor in a tone which she was saying, “shut up and sit down at your wall facing chair.” At this point, Jim had finished his call and was now standing beside me since there weren’t any chairs to sit. He questioned what was taking so long and the clinical trial person asked, “still feeling the same? Any problems? Okay see you next week.” I was not sure if she wanted the truth, so I answered with a “yes” and “no”. The factory visit was concluded and hoped secretly that my comments could change this factory into a more patient focused factory. I know it would make a difference. I laughed as I read the sign in the factory about commitment.

Clinical trial 101

June 28, 2014

I’m a phase 1 lab rat, guinea pig, hamster…specimen.

Most Phase 1 trial participants are either so sick that they have zero options or in some cases a phase 1 can be a new drug for those who have no evidence of disease. My situation is that the cancer continues to grow while I try to manage the growth along with the side effects from the new drugs. I always put on a good show and look nothing like the rest of the clinical trial groupies, but when every day functions of basic needs get out of balance then I tend to show my true colors of fear, even panic, sadness, anxiety, and much concern.

With the clinical trial process, there are two closets and strangely enough one has a view of the ocean and one faces another building. The first closet is what I call the DTD (door to death). The participants in this room cannot walk without assistance and have that appearance no patient wants to see. Of course, this closet faces the building as if the staff know it doesn’t matter although it should. The second closet faces the ocean and was the place I visited for my long day. Also, the first closet is used for short infusions or blood draws. The rows of seats and pods are just too close together and are too close for my visual imaging or imagining. When feeling as I did full of side effects and cancer growth, I speak the truth. I answer with, “I’m not fine” and see their fear and concern in their eyes. It is not the concern for me as a patient, but fear their trial will be impacted. I get it, but the sights that surrounded me are not motivating and facing the wall of another building brings those walls closer with magnification of all my issues.
Key things to remember and understand when you are in a clinical trial are especially dose escalation:
1. Ask questions, and don’t stop until you get your answer
2. Have someone with you at all times
3. You are a specimen so no one cares about the cancer unless phase 2, communicate if you know things are getting worse. Their focus is drug toxicity.
4. Ask what cell lines are they targeting (Ie: which cancer)
5. Ask what happened to the rats in the lab
6. Ask about the cohort, number of people in each and if drug works can you switch to different arm of trial, and know what your dose is
7. Dose escalation may not mean you will get a higher dose depending on what cohort you are part of.
8. Understand who is part of hierarchy:
Coordinator, project manager, doctor who sees patient, data cruncher, lab “rats”
9. find out if study pays for anything:
parking, meds etc…your insurance may have to pay for drugs, procedures, labs etc…
10. add to your job list a new job of clinical trial true real coordinator: ie pre meds, bandages for port, schedule, meds outside of trial drug since the one who you are introduced to
just makes appointments, your oncologist is the one who knows your history, clinical trial peeps don’t know and really don’t care
11. if trial needs you to get a drug which is offered for cancer, make sure it is covered for yours (ie: if it is not, as I was told at 4pm on a Friday, you pay for it or you don’t get into the study)
KEEP IN MIND:
Understand that you are a guinea pig or hamster or lab rat and NO WHEEL will be provided, forget the sippy bottle of water too. You are on your own. You must do the work. You must ask the questions. You must work with the numerous people to make an appointment, get the drugs plus all the other people you normally make appointments.
Now, since I am a new clinical trial coordinator, I must follow up on my medication confirming dosage and other important information. Also, since the many staff who do their individual jobs on the clinical trial train and who don’t communicate with each other even though I learned they are a very short walk down the hallway, I must now take the answers from what happened with the meds to the real coordinator, communicate the info from the scheduler, and add any info from the riddler who may be the only person who knows what is going on. The riddler continues to pose question after question without any concern for answers which I must find, ask others, and pass this info to the next person. Sound confusing? It is, but don’t let the game get you down as you have access to new exciting drugs which may work!
So, if anyone is wondering why I haven’t done much on any real life activities, you see that the answer is that I’m on the clinical trial train. I am riding this ride with the numerous side effects of drugs along with side effects of cancer growth. I have also been on the nausea cycle. More nausea requires more meds which results in more constipation which is compounded by the existing constipation brought by cancer growth. The key is to keep the nutrition in the body while having the body react as normal as possible. When blinded by nausea, the focus is lost and the goal of every day things go astray.  In this situation, the priority is what most people take for granted, simply eating, drinking, and eliminating. Each step becomes a crisis and must be managed. The more common occurrence is a bowel obstruction, so focus has to remain consistent. All other day to day activities are put aside. This is when a spouse or significant other becomes critical for your every day survival. I’m lucky to have a great support team.
My clinical trial train is weekly visits to UCLA which anyone knows how painful that is, plus it is Santa Monica I need to visit now. My treatment schedule and windows of freedom have become smaller.I am told that this drug combo takes 3 weeks to work, so stay tuned.  Any available window of opportunity that I feel somewhat human, I exit immediately. This really puts into perspective free time and summer has a whole new focus. I will continue to find my sunshine today and every day. I hope you find your sunshine. It is important to find your sunshine!

Look down: the kitchen is a dangerous place even without the sharp objects

June 11, 2014
Note to self, when you are a cancer patient look down where you step because one wrong move you can end up wiping out in your own kitchen. If you decide to wipe out, don’t do it before you are going for an initial visit for a clinical trial. Somehow, I slipped on a piece of plastic, into the oven door, flat on the floor. Blood was dripping down my face and I screamed for Alex who was playing basketball. He came with his friend and both remained calm even though they really wanted an ambulance to come. Thanks to a call to his mom who ran to my house with her hubby, all was assessed and evaluated. We all decided that if I was “normal” maybe we would just use liquid bandaid. Since I have the ole’ special immune system plus all the other issues, it is best to go to the ER. It is nice to have friends in high places who can get you into a room away from the germs in the ER. Poor Jim was called by Alex who told him, “mom fell down, hit her head, blood is everywhere, come home now.” Luckily, we called Jim back after I was iced up, but his heart palpitations continued when he saw my purple swollen face. We all went to the ER where the doc said glue is better than stitches when the skin comes together perfectly. Another adventure outside of days of isolation.
My time of isolation ended to realize that I am in a strange place of time without chemo not by choice and cancer growth continuing. Both things, I cannot do anything about, so I have to enjoy my days as much as possible. With the continual rise of the tumor marker, comes increasing a symptoms from cancer growth. Some symptoms are more glaring than others. Without the ongoing toxicity of chemo, my head seems clearer (able to answer Alex’s questions with somewhat clear mind), but the constant reminder with increased symptoms is difficult to put in the back of my mind. Instead when I awake each morning, I tell myself I am as good as yesterday to do things I want to do and ignore as much of the symptoms as possible. The last reading of the tumor marker put things into a tailspin as a scan had to be scheduled. This was all in an effort to enter the phase 1 clinical trial land as opposed to the wheel of fortune chemo adventure land.   As much as we fake being a doctor, a clinical trial has it’s own language and it helps that my oncologist can speak that language as he has performed countless trials and recently presented results at ASCO in Chicago. So, his involvement was not only necessary but critical. From the moment my scan was done, he was involved so much that he even began to converse with me via text and email with a furious pace that the urgency was felt unlike ever before. He also had his usual sense of calm and reassurance that this opportunity was one that I couldn’t miss. We are again in a different phase that I could never have imagined. I cannot be worried or skeptical or even be upset because this is what I have to deal with. I have to accept what it is for the moment. Is it ideal? Nope.
So, the unfortunate thing of the trial is that it is in Santa Monica which is like Laguna Beach in the summer for parking. After driving 2 hours, then we have the lucky time of finding a spot with a meter for more than 1 hour as we all know that any doc visit can be 2 to 4 hours. We haven’t fully evaluated the entire facility. I have been going to UCLA Westwood for over 4 years, so it is my “home away from home”. Santa Monica is the land of clinical trials and many are phase 1 which does mean for many more than being  a guinea pig. I was one of the few walking into the office. Many had walkers and many had wheelchairs. These faces were beyond anything I have ever seen at chemo. There were some with their own oxygen and many bald women with sunken faces. I tried to ignore the images and ask about important things like where do you get food here. I guess it was a strange question given the audience in this closet. You see if you are on a phase 1 trial, then they need to measure your blood almost every hour for 9 hours. The positive is that this closet has full bright open windows and I heard you can see the ocean.  Another positive is that despite the weekly visits to Santa Monica (we think for only 5 weeks), the drugs are pills. I am queen of managing side effects, so I plan to do the same here to have the FREEDOM from the IV. All in all between my face injury and the day at Santa Monica I am wiped out. Last positive is that until these pills are started, my blood is in the somewhat safe zone. I referred to my blood counts as rock star counts to the clinical trial doc and I think (I know) he thought I was crazy. Hey, once you have hit the zero zone of having no ANC to fight infection, you learn to appreciate the upswing even if it isn’t in the normal range.
I am making the most of each day and always finding my sunshine. I am so thankful to be out of my isolation running into some smiling faces that I have missed seeing for too long! Make the most of your day…summer is almost here, enjoy the late nights full of light!

 


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