I have fallen behind in keeping this up to date. No excuses…just chose to spend my time doing other things is the bottom line. I started writing this several weeks ago so it has been a work in progress as they say . All is well and I will give you the scoop below. Thanks for reading and let me know your thoughts!
I received my infusion on March 25th and all went well. My tumor has decreased in size a total of 18% since the beginning! The lymph nodes within my lungs have decreased in size and are the biggest contributor to that overall decrease. This data comes from the CT Scan. The “cloudy” / poorly differentiated part of my tumor is about the same from my previous CT Scan…with possibly a little increase. My cough has increased a little bit and even though there has been a decrease in my overall tumor my breathing is a bit more constrained than say several weeks ago and I attribute that to the little increase in my “cloud”.
I will have my next infusion on April 18th as well as my next CT Scan and a host of other tests. Every 6 weeks will be a check point to determine the path forward. There are three elements that inform the path forward:
In the last Protein Marker test, my score was 55, this is down from 268 which is where I was at the beginning of my treatment. This is great news that the number has continued to drop! The doctor uses this information as a data point relative to how things are progressing within my body. Just an FYI…you only have this protein in your system if you have cancer or are a new born baby.
As we consider the above three factors we will make a decision to stay on course with maintenance Chemotherapy or to pivot to a different treatment. The doctor told me that the longest he has had someone stay on the maintenance chemo is approximately 1.5 years…so I hope to beat that record! There are definite side effects but nothing that slows me down too much.
I continue to go to the doctor every three weeks and to be part of the clinical trial even. I am not sure how long this will continue given it takes a considerable amount of time and effort to be a lab rat for research, and I am happy to be helping future patients in a small way.
I had a combination of a few interesting experiences over the last weeks that I will share with you. I was in Utah at TEDxBYU on the night of March 24th. You should go check out the 2016 talks when they get posted in a few weeks. http://www.tedxbyu.com/videos.
I was on the planning committee and had the opportunity to work with many of the great presenters including Jeff Clark--Mavericks Pioneer, Kate Hansen--Sochi Luger, Randall Bell--How People can “Thrive” when faced with a Challenge, Chris Burkard--Outdoor Photographer, and many other amazing humans from around the world. For sure…check it out! It will inspire you!
On the morning of the 25th I flew to San Francisco and had my chemotherapy treatment at UCSF. That afternoon my son Henry and I caught a plane to Hawaii to paddle an outrigger canoe from Oahu to Kauai with the Hawaiian Outrigger Voyaging Society led by my good friend Matt Muirhead. We left at 12:30 am on the 26th and arrived at 2:30pm in Kauai. It was an amazing experience to paddle a boat with 14 other mates trading off every hour with the next team of 6 paddlers. We had a chase boat to store our gear and warm up before diving back into the water and climbing into the canoe.
When you get chemo (or at least my chemo) you have to take steroids the day before, the day of, and the day after so your body can counteract the poison that gets put into your body. When at home on the day of getting chemo, I usually have to take one of the pills they give you as a downer to help you go to sleep because the steroids can cause you to stay awake and count sheep all night…so I figured the timing of this voyage might just be perfect, in that I would not have a problem staying awake during the crossing of the channel!
7 months ago when I was first diagnosed, my good friend Matt came over to the house and said, “Greg, we are paddling on March 25th from Oahu to Kauai and I want you in the boat!” I thought to myself, “well, not sure how I will be feeling, but I will commit!” Matt is a smart man and was applying a wonderful principal called, “Discover the Compelling 'WHY' in whatever you are doing and it will change the game.”
It was never an option in his mind or my mind that I would not be paddling on this voyage. I was strong and healthy the entire way, and many of the folks on the trip got sick and had to sit out a few shifts to let their bodies recover. Some guys were throwing up over the side of the outrigger and the chase boat, mostly due to sea sickness and all the turbulence in and out of the boat.
Many years ago when Matt got me into paddling outriggers, he taught me that you must have a BIG WHY burning within. He said, “when you begin journey’s or tasks that can sometimes seem out of reach and will cause you to suffer mentally, physically, and emotionally, if you don’t have a profound 'why' burning within, the suffering will become intense, painful and your mind will play games with you”. He continued, “If you do have a burning 'why within' the present trial at hand is minor in comparison to your true goal and is viewed as a little hurdle or even an opportunity”.
In the early entries of my blog I spoke about the “Placebo Effect” and how our minds and our thought processes can be a major factor in influencing our health and well being. The boat is an amazing place for this metaphor to play out as it will test your fortitude especially as your body gets beat and tired.
I was worried how all the drugs in my system would mesh with the Bonine (sea sick medicine) and the goo’s and power bars that I would be eating, but it all worked out great! The fact that I was on my steroids was probably a big bonus for me as they make you your body strong during the time you are taking them! It was not easy, but in a strange was it was easy given I wanted to do this trip for many reasons that were deep within.
My reasons were I wanted to show chemo who the boss is and that cancer cannot keep me from doing the things I want to do as long as I am able. I wanted to paddle with respect for a friend who had passed away from cancer and for whom this trip was in honor of, and for my friend Matt who knew that by giving me a challenge 7 months ahead of time and believing in me that I could rise to the occasion. Once on the trip, new whys revealed themselves and the deepening of the voyaging experience happened while in the midst of the experience and then after during the reflection period.
When you know someone believes in you in this type of way it is amazing what the mind can conceive and what the body can achieve! This is a great lesson for all of us as friends, parents, significant others, co-workers, teachers, etc. People will rise to the level of expectation that you hold in your mind because they will feel your power and they will work hard to become smarter, better, faster, and stronger as they feel your confidence and faith, and you will teach and instruct them with a purity of intent that is felt by the receiver.
This entire notion of the “why” within is something that applies to everything we do and it makes any difficult task on the outside get much easier when you look at it in the context of the larger goal you want to achieve. There has been much said about this topic thru articles, literature, etc. over the years (see links at end of blog for references). It is not anything new, I have heard it for years from friends like Matt and other wise people, but it is something that we as humans often forget when we are in the midst of any trial or battle.
On the voyage from Oahu to Kauai the trip's main purpose from the Hawaiian perspective was to remember the ancestors of the past, and their goal as a voyaging society has been to connect all the islands in the Hawaiian chain by paddling all the channels as a symbol of how we as people are all connected and to remind all of us to be mindful of those forefathers that have come before us and have paved the way for us to be alive today and to have so many amazing opportunities.
The Hawaiians take this concept very seriously, this is not a fad, they truly believe in honoring and sustaining their ancestors and this voyage paid homage to them and they believed that we were watched over and protected on the journey. A Hawaiian Ali’i (Royalty) blessed our trip at the beginning and at the end and the big WHY for all of us was to pay our own respects to our fellow braddah’s and sistah’s, mothers and fathers, grandma’s and grandpa’s, aunties and uncles, friends and relatives who have made it possible for us to breathe each day and to enjoy this amazing world.
As we paddled under the moonlight with only the sound of 6 paddles hitting the water at the exact same moment, felt the pulse of the boat on each stroke, respected the energy of the ocean and the simplicity of powering your own way to a body of land, there were some special moments of reflection about all of the above and these simple moments of deep appreciation are moments that can carry a human thru anything present and future.
We all have much to learn from the Hawaiian way of thinking and treating others past and present. Feel the Aloha and bring it into your world. The larger Ohana (family) that we are all a part of is truly breathtaking. Feel it and appreciate and acknowledge the deeper WHY, it will change your perspective.
Kipona Aloha (Deep Love),
In the spirit of Ted Talks Simon Sinek has an 18 minute talk worth watching about the Why Concept:
If you don’t have that much time here is a 5-minute version - https://www.youtube.com/watch?v=IPYeCltXpxw
On the 16th of March I received my 2nd infusion of maintenance chemotherapy (Alimpta) at UCSF. I also had my standard blood tests and check up with the doctor. Since my infusion I have felt good and have been able to do most things. Our hope is that I will be on this maintenance chemo for a long period of time so I am choosing to “enjoy” the infusion and the symptoms associated with it. I am still learning about those symptoms, which for the most part are much nicer than the full chemo!
The basic side effects thus far are fatigue, swollen face, runny nose, and sometimes some weird tastes in my mouth and stomach. To me, this sounds like a normal existence so honestly nothing to worry about. A friend (that is 75 years old) asked me how I was feeling so I shared some of the above with him and he said, “when you are over 70 you feel that way every day!” I got a good chuckle and perspective out of his comments!
The way my mind works is that I kind of don’t want to know the potential side effects, because I don’t want to be overly sensitive to them and at the same time I want to be somewhat aware. I am finding it is an interesting mind game and exercise to listen to your body and play for the long haul by doing the right things but not over rotating to be too sensitive.
On March 7-9, I go to UCSF for another maintenance chemo infusion and more tests including a CT Scan to see if my cancer has grown/decreased/stable. As I have previously mentioned, we hope for stability or decrease. It is an interesting world, because every 6 weeks I get a reading on how I am doing and that determines what happens over the next period of time-if stable--status quo, if growth--then a new set of actions and decisions will be necessary to figure out. I laughed with another friend, “maybe I will set goals that are achievable in a 6 week window!”
Over the last 6 weeks, I have met with several doctors to explore the potential alternatives should my Tumor (how they refer to my cancer) grow. There are different schools of thought and as I have mentioned new research on a monthly basis to track. I have determined that keeping track of all the changes would drive me crazy and would be a full time job, but that keeping my relationships with these doctors up is key so that if need be we can within a short period of time make an action plan. The current plan would be some type of immunotherapy or some kind of treatment associated with my Her2 Mutation. Location for all of this would be TBD.
Of course I hope that I will not need to explore these treatment options for a long period of time, but I do want to be prepared should it be necessary. The doctors have told me that at some point the tumor will grow back. As much as I don’t want to believe this, I guess they know what they are talking about, so if that time comes, I will be prepared.
One thing I have noticed is that my interest to do some of the things that I have done my entire life are shifting. For example, going out to dinner with people I don’t know and having to hold a conversation for a couple of hours is a draining experience for me. Many of you that are more introverted are probably saying, “no duh, I hate doing that!” Well, I have been one of those people that had no problem with that activity and found pleasure and excitement in it. I am learning to monitor my behaviors and it is challenging because I think a certain way and we know thoughts precede the actions. We shall see what evolves over time! ☺
I so appreciate the love and outreach and notes from all of you and just the thoughts alone I know send energy to me! You have made me stronger, made me push forward, and I can’t thank you enough for all your prayers and positive energy!
The doctors have been surprised by how well I am doing and that I am returning to “normal” activities. I told them I don’t have a choice, with so many people cheering for me in their own ways, I must rise up and beat this cancer! So it shall be done. True love and appreciation is the source of all power and gives all of us the ability to get thru lives trials and obstacles. I have much love that needs to be returned and shared with others that I really look forward to the future!
You will recall from previous posts my story about how my daughter's friend Cheryl helped me discover my cancer. I asked her to write up her experience so that we could all get her perspective. She did so, and I am excited to share it with you now.
Written by Cheryl Neufville, February 2016
Have you ever gone somewhere on a whim? No logical reason behind your journey, apart from the fact that it felt right and it was going to be an adventure that you would probably never forget? Well I have, and my summer of 2015 is one of those wild decisions that had more purpose in it than I ever could have dreamed up.
Ella Madsen and I had served LDS Missions together in Alabama and literally from day one, we had a connection we both couldn’t describe. Everyone thought we had known each other for a while, and in a way, I want to say we did. We served around each other, and one night, while talking about her life in California, and my life in Boston, we cooked up a plan to spend the summer together. We both would be coming home from our 18 month missions in April 2015, and had no commitments to anything, apart from enjoying being home. We grabbed a nearby calendar, and picked a date for me to come.
I knew I’d only be home for 6 weeks, but it felt right and I knew my mom would understand. That Monday I sent her an email explaining my summer plans. She gave me her blessing, we bought the ticket, and just like that the summer with the Madsen’s was in full motion.
Months went by. We finished our missions. I reconnected with my small but very energetic family. We celebrated my 22nd birthday, and before we knew it, I was on a plane to California.
While I was there, I developed lasting relationships with many people, one in particular was the father of the home, Greg. This man changed my life in so many ways. He is genuine, kind, smart, calm, and enthusiastic. He is a businessman, devoted surfer, compassionate father, and an amazing listener. He would take me out surfing almost everyday, and though most of the time I was struggling to stay on the board, he was patient with me and never failed to relate surfing to a life lesson. I grew much because of his example. I learned about real and lasting happiness with this family. We would have random dance parties (that even drew the Police to shut us down), take runs down the beach, have morning smoothies, played with Guacamole recipes, and hit up Amundson Crossfit every morning at 6 or 7am.
Life was literally amazing and it felt as if time was forgiving, and stopped for us.
A few weeks into my stay, Greg started to develop a cough. We honestly didn’t think anything of it, but as time went on it got progressively worse. He went to the doctor and they suggested getting rid of all smells in the home. We had a family meeting, and the suggestion was implemented to get all the “smellables out of the house.”
Now, just a little background on me, my family is from Liberia and ever since I was young, we would make homemade body butters and mix oils to put on our skin and in our hair. As an African American, my skin and hair can get extremely dry, and the butters and oils helped to keep them soft. Of course I wouldn’t argue with getting rid of my products, but I can’t deny the fact that I felt like I was giving up a part of who I was.
I was already out of my element, and had very little to identify myself with. Greg was worth the sacrifice, and I was grateful that I had the opportunity to re-establish who I was in such a new environment. As time went on, I was becoming aware that my products were what was causing his cough in the first place. His wife Jan used essential oils as well, so that wasn’t a rare element in the home, but my butters were. Even though we went scent free, the cough lingered. The doctor suggested to Greg that once I left, things would get better. This is something he did not share with me until after I left the house. In my mind I was worried about my scents, and knowing you are causing someone else to be sick isn’t exactly the best feeling in the world. It got to the point where I had convinced myself that he was literally allergic to the natural oils in my skin (aka… me).
I was embarrassed and tried my best to be out of the home as much as possible. After work as a camp counselor, I would take the long route home. I love being outside and sitting in the sun, so eating outside wasn’t a problem. I didn’t want to make matters worse so I started separating myself. It was hard to communicate my reasoning behind my actions. I started to question my purpose for even being there in the first place. People would ask me why I wasn’t home with my own family, and I honestly didn’t have an answer for them. I didn’t know why I was spending 2 months with a family that had such a different style of living than me.
They surfed and loved heights, jumped off zip lines, and liked hiking up mountains, and sleeping in a sleeping bags along the river bank. I grew up playing basketball at the south-side courts with my brother and double-dutched in the street with my friends until the street lights came on. The sound of sirens did not faze me and I had never learned to swim or to “camp out.”
We were polar opposites, but one thing I knew for sure was that it felt right at the time to be there with them. I was out of my comfort zone A LOT. At times it was amazing, and other times, I just wanted to leave, but I gained so much knowledge through the many situations I was in. I went white water rafting for the first time in my life, and totally fell out of the raft on the first bump (that was not fun…but very funny). I did not want to tell them that I did not know how to swim. Just imagine the inner dialogue I had going on in my mind!
I rode a roller coaster for the second time in my life and didn’t pass out (but my voice hurt for like 2 weeks). I stood up on a surf board for the first time and finally understood why people would wake up at the crack of dawn to paddle out in the OPEN ocean and sit for long periods of time anxiously waiting for the next set to come in. By the time August rolled around, I had felt like a completely different human. I could imagine living by the ocean and making smoothies and raising little groms and going out to the ocean to watch sunsets. I loved the lifestyle and the people in Santa Cruz were amazing.
Though I didn’t share much of my culture with them, I was happy to embrace a new way of living. When It came time to leave, I felt my heart breaking. I had learned so much from them, but I knew things would get better for Greg once I left. We all loved each other, and at the time, I thought my purpose for being there was to learn how to be truly happy. After long hugs and tears, I was on a plane to Utah, where I currently attend school at the University of Utah.
Ella came by my house about 5 weeks later to catch up and bring me a few things that I had left in California. Something was different about her and after a while of small talk, she told me that she just received news that Greg had been diagnosed with stage 4 lung cancer. I couldn’t control my tears and we both just held each other and cried. Flashbacks of our time on the water, white water rafting, smoothie making, and watching sunsets came flooding in my mind. How could God let this happen?! Ella of course found the positive and potential blessings of this trial, but I couldn’t understand it. I called Greg a few days later and he started off the conversation with humor and whit. He was heading to yoga when I called him (I know, he’s a rockstar). He was so optimistic about the whole thing. He had already chosen to endure the trial well. I knew at that moment that I needed to meet him. He had taught me, just in that short conversation, that you literally have a choice in whether you want to be happy or miserable.
Just a few weeks ago, I found out a little more about how they discovered the cancer. Apparently, when he went into the doctor to get his cough checked out in June, they did some tests. Those results revealed the cancer in his lungs. He wouldn’t have gone to the doctor in the first place if I didn’t stay with them that summer and introduce them to my body butters and oils. The shea butters triggered physical symptoms of the cancer that had been growing for a number of months. I couldn’t contain my tears when I found this out. A wave of relief had filed my body and finally help me realize my purpose for being with them that summer. How ironic!!
Here I was thinking that I was unintentionally hurting someone I cared about with my habits, and it was the very thing that saved his life. I was astonished. The power and condescension of God was beyond my understanding. He knew why I was supposed to be with this family and it was more than just making bonds and adapting in a new element. Because Ella and I listened to the promptings of the spirit, we were able to learn so much together and the shea butters played a big role is helping her dad become aware of his health situation. Greg believes that if the home environment would have remained status quo that he probably would have just pushed forward, he needed something dramatically different to trigger his cancer and to make him go to the doctor.
What’s the moral to the story, you may ask? I think there are many that I learned along a huge spectrum. One thing for sure, it is our job as fellow humans to listen to the spirit and go where God needs us to be at any given time, even if it makes no sense to us at the time. Pray for the spirit of comfort in new environments and be a learner, not a prisoner. Even though it may be painful in many ways to be in unfamiliar territory, being a rookie is the best way to new paths of growth! You will see your purpose for being in certain places eventually. God’s plan and timing is perfect and we’re just along for the ride my friends. Enjoy it, because just like surfing, you never ride the same wave twice. I now have a second family and a father that I love dearly who I learned so many things from that will serve me for the rest of my life. As painful as it was to get tons of mosquito bites, get tumbled by lots of waves, be fearful of drowning, wear a climbing harness and trust a rope, get rid of my shea butters, and endure my internal torment, I will never forget that summer or God’s love for me and those I grew to love! I would not trade it for anything, and how grateful I am that I could play a part in helping Greg discover his Cancer!
I received the results back on my CT Scan and I am continuing to make progress!! My tumor decreased in size from my previous scan, and my blood clot is gone and most importantly I am feeling good.
I will continue to take medication for the blood clot and we will assess how I do on the maintenance dose of chemo over the next period of time.
We will assess the cancer via CT Scan on a regular basis to see if it stays stable or decreases/increases in size.
If it increases, we will determine a new course of treatment, otherwise we will maintain it with the maintenance chemo. Stability is what we are hoping for at this point.
I will be researching the options for future treatments over the next period of time to make sure I am prepared to make some decisions should it be necessary. I will also be focussing on getting my body and mind back into “fighting shape” as they say!
My treatments will be every three weeks at UCSF and it was officially confirmed that I do not have to visit the doctor at UCSF every week going forward.
If you read post #10, you read the story about Cheryl and the amazing role she has played in my life last summer. I learned more about her experience and I have asked her to write it up so that we can all learn from her unique perspective--which in my opinion is moving, sad, and inspiring all at the same time. This is real life….better than any sitcom!
I had a chance to see Cheryl and several of my kids' friends the other night who have been diligent in praying for me, sending me positive energy, wearing bracelets, and being amazing friends to my kids during this period of time. I did not expect it to hit me in such a dramatic fashion but it was emotionally overwhelming to finally see people who from a far have had me in their hearts and minds and who genuinely have desired for me to return to good health. I know this would be true of any of you who are reading this, and it is just an amazing feeling to know and feel the love.
I pondered today that I am so lucky to actually be able to see these people and to be overwhelmed with their compassion. I could not help but think that there are probably so many people cheering for us that we never get to meet, but if we could, we would have a similar feeling to what I had the other night.
Enough random thoughts for one night…have a great day, get outside, exercise, eat right, be kind, work hard, turn the other cheek, do a good turn for someone you don’t know, be forgiving, be thankful for your family and friends, and tell the people around you that you love them!
For kicks, lets start with the challenges of the last couple of weeks. I have experienced the following symptoms at times over the last two weeks: tongue feels like I have been to the dentist, mouth tastes like aluminum foil, hankering for pizza, a few sleepless nights, trying to get psyched up for another shot I have to give myself, and some tiredness.
Now to the Positive:
I believe that I must have been on the trial drug (Demcizimab) because I have not had any leg cramps, I don’t have a rash, I have not had any weird aches and pains, and I just overall feel better.
I am so excited about how I am feeling and that I am getting better! I hardly cough, and I can breathe much better. My voice is returning to a more normal pitch. I am so mindful of the faith and energy and prayers of all my friends, it honestly feeds me to think positive and to expect miracles because I know everyone is thinking that way!
The next big event is January 25th when I will have another CT Scan and we will get a sense of whether the tumor has continued to shrink or if it has stayed the same. I of course am hoping that is has gotten smaller, but the docs say that even staying the same is great news.
On the 25th I will also get my first dose of Alimpta, which is half of the Chemotherapy I have been getting and should be less impactful on me. The doctor tells me that I will be able to return to normal activities and that my immune system will not be compromised while on Alimpta. Stoked!
I will receive this maintenance drug for an undetermined period of time every 3 weeks. If my tumor (which is the one word description for all of my cancer) stays the same size, I will stay on Alimpta for an undefined period of time. If the tumor grows, then I will have to determine the next treatment option that would be appropriate.
The exciting news is that the pace of insight into Lung Cancer is changing every day and it is a good time to have Cancer (if that is something you can say??). The doctors say that on a monthly basis they are adjusting their recommendations based on new information as a result of the great research that is going on!
I have begun to learn more about the Line 2 (term to describe the next level of treatment after initial treatment) options, and I have been doing research into these choices so that when and if the time comes to make a treatment choice that I will be well educated. Given that it was discovered I have a gene mutation (HER2), that will have an influence on what choices are available to me and I have met people thru some amazing connections who are helping me with all of this.
There are many stories to tell about the journey over the last 6-8 months that I am sure will come out over time. I feel compelled to share one of the them now as it is a great story and contains many learnings.
My daughter Ella was on a mission for the LDS church in Alabama from October 2013-April 2015 (yes she is quite happy about the National Championship-Roll Tide!). In February 2015, she mentioned to us in a letter that a friend she had met on her mission was going to come and live with us from June 3-August 3rd 2015. It was a peculiar note in her weekly letter because she did not ask our opinion or if it was ok. She more or less just told us that Cheryl was coming to live with us. I remember reading the email and thought, “OK that is cool, I guess she really wants Cheryl to come live with us…so I support that.”
There was not much discussion via email, Jan and I talked about it a little bit, but it was not a major subject of discussion. Ella got home in April and was excited for the summer. She was not quite sure how it came to be that Cheryl was coming, but she was excited and looked forward to it. They had never lived near each other but were acquainted enough to both think it was a good idea.
Ella amazingly found her a job with the City of Capitola within the first two weeks of being home. Ella proclaimed numerous times that miracles were happening in her life and on Cheryl’s behalf in terms of summer plans. I saw those miracles and was a bit taken back on how so many great things were just falling into place. There were many people who unknowingly influenced many things that I was going to be the beneficiary of down the road.
Cheryl arrived on the night of Emmett’s graduation party and we began what was to be a wonderful two months getting to know and love Cheryl! When she arrived, she brought with her unique smells that were foreign to our house. She liked oils, cocoa butter, and other unique products. It was all good, the job went well for the city and we loved having her in the home.
Around the end of June, I started to cough quite a bit, and I could not figure out what it was. My theory was that there was a smell or something in the house that I was reacting to. I did not know if it was the new scents that Cheryl brought or if I was reacting to the other products in our house or maybe something floating around outside. As you will recall from my previous posts I forced myself into my doctor’s office around the end of June and inquired about my coughing. After letting the doctor ask me a bunch of questions, I shared with him my theory that maybe the new smells in our home were the cause of my cough. He immediately said, “you are 99.9% on target, when does she leave?” I said, “August 3rd which is about a month away.” He said, “well, you have three choices, 1. Get rid of the smells or 2. Just wait for her to leave.”
The doctor explained he thought I was having adult asthma or I had developed some type of allergy and I was reacting to it. I have never been allergic to anything and I have never had asthma so I was open to that but skeptical. The doctor put me on some medications and said go check it out.
We had a family meeting and told everyone if they had anything that smelled we had to get it out of the house, so shampoo, soap, perfume, deodorant, oils, etc. all got collected and we either stored it outside or threw it away. Over the next few weeks, no change in the cough and breathing challenges. I went back to doctor and he decided to put me on an inhaler and said that most likely it would get better after Cheryl left. He basically had bought my theory that the new smells in the house were the cause of my problems. Honestly, I thought we were both correct or I thought I was having an allergic reaction to something. My doctor said he was allergic to all sorts of stuff and had been using an inhaler his entire life, so it seemed he was pre-disposed to thinking I had some type of allergy.
August arrived, Cheryl left, I went to Baja with the family for some fresh air and I just thought by the time I submerged myself in the ocean every day and had weeks away from the house I would return and all would be well. In Mexico, I did not get any better, in fact I got worse, I lost my voice and for the last 5 days I could not talk.
It was the weirdest trip, I was there but I was just an observer after I lost my voice, I could not participate in conversations, and I was thankful to be able to listen, but it was lonely and I got a deeper sense of what it must be like to be deaf or mute and not be able to communicate freely with others.
I had this feeling one other time when I served a mission in Montana and Wyoming for my church and worked at a deaf school. I remember that I had to go thru a week long immersive workshop that helped me to “try” and see the world from a deaf person’s point of view before they would allow me to work at the school. For that week, you were not able to talk. It was one of the more interesting weeks of my life and the subsequent time at the deaf school was insightful to say the least. I have real compassion and empathy for the world they live in and how hard it is to live in a world that is geared towards those that can speak and hear. Some of the same feelings came back as I was in Mexico, it feels like you are living in a cocoon.
When I got home and went to the doctor things progressed and 5 weeks later I found out that I had cancer.
As I reflect on the summer, it is very clear to me that without Cheryl I probably would not have discovered my health challenge until the symptoms got more pronounced. Clearly I would have figured it out at some point, but she was a catalyst. I definitely think that the scents she brought into our home were a gift and a major blessing in my life. Someone once said, “Chance is God's way of staying anonymous.”
The doctors have no idea how long my lung cancer had been growing, but given it was in stage 4, I needed to discover it as fast as possible. I am not sure how it works, but at some point something triggers and you begin to have symptoms. The mind clearly plays a part in all of this as well as I am the type of person that never thinks anything is wrong with me and I definitely have a mindset that I won’t get sick regardless of what I am exposed to. (I clearly have some learning to do.)
So when you begin to think about all the elements that had to come to pass to bring Cheryl into my life, the only answer I can come up with is that God knows all things and he helped to make it happen. I am super curious to speak with Ella and Cheryl and understand their stories in greater depth in terms of what led each of them to make the decision to have her come to CA. That will be a great post to get their story and compare!
There are so many factors that had to align. You can call it chance but there is no way this was chance. Cheryl had never been to California, she did not have a job, she did not know Ella that well, we had never talked to her, her family wanted her in Boston, she had been serving a mission for 18 months away from her family and friends. She clearly was inspired, and that decision is contributing to saving my life. How thankful am I for her and for a loving Heavenly Father that figured out a creative way to help me discover that I had Cancer. In an earlier entry, I quoted Steve Jobs who said, “When you look back on your life, you can connect the dots and see why certain things happened…looking forward it is never clear why you are going thru whatever experience you are having.”
So what is the take away for me? God has a hand in all of our lives. He is the master planner. He knows us, what we need, and who can help us at any given moment. The other day I was talking with a friend who is a big wave surfer and we were talking about God and atheism and he said, “there are no atheists in the impact zone.” I inquired further and over the years when he has pulled people out of the impact zone doing water patrol or heard their stories, many of the guys have said, “I do not now if there is a God, but when I was getting pounded and wondering if I would survive, I prayed to God to save me.”
My life experience is that people come in and out of our lives and there are no mistakes. We are each inspired to do things to help others and this is all part of a major plan. I often times wonder when I have been inspired to do something, go somewhere, make a turn in my car, etc. and of course I have no idea why, but God does. God works through others to help each of us.
I have pondered about the times when I have not responded to some inspiration or thought and wondered, “did I disappoint the plan or did I just make God go to his back up plan because I was selfish or unwilling to sacrifice my own desires for a higher calling of doing something for someone else?” I so appreciate the people who have made decisions and choices that have made my life so amazing. I know that I would be nowhere without the teachers, friends, parents, siblings, kids, neighbors, colleagues, unknown soldiers, etc. that are influencing my life every day.
I actually think if there was transparency in how things work, we would all approach life in a much different vein when we see how people past, present, and future are influencing each of our lives every single day and minute.
As I look back on this story it is ironic to see that what I thought was causing my problem, the smells, were actually saving my life. It is quite fascinating because often times the things we hate most are probably exactly what we need to help us make progress in our lives. As painful as that might be to swallow, I think it is the truth. Given that, it would seem natural that we would embrace these struggles and thank God for them. Although counter intuitive, if we do this, we will make it through our trials quicker and get to smoother sailing waters in a much better state of mind!
I am thankful for Cheryl and Ella for listening and following their hearts even if it did not make sense at the time. As a by-product, I discovered my Cancer and have a new friend/daughter that I love and am so thankful for!
Much love to all of you!
This being human is a guest house. Every morning a new arrival. – Rumi
In the poem, The Guest House, Rumi uses the metaphor of a house guest to create an image that each day we have the opportunity to welcome something new into our lives, even if it is unexpected. And just like the house guests who can cause us to feel uncomfortable with their visit, unwelcome feelings that stop by our house, our life, can be just as exasperating.
We wait impatiently for these house guests to leave so we can put our house back just like it was before they arrived. However, underneath the irritation can live incredible value when we take the time to receive these guests with humility and courage. This is how I feel about my situation…I know this is part of a larger plan and that what I and hopefully others can learn from this experience will make the future more exciting and rich if we take the time to embrace it and welcome the insights into our lives.
Rumi’s poem is a good reminder to embrace change, face our fears and use our bodies as a guest house to welcome whatever, and whoever, drops-in on us from time-to-time:
The Guest House
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
– Jelaluddin Rumi
Fear keeps us trapped. We shut doors and windows and refuse to let anything, or anyone, new inside. We hide in the familiar. We keep growth and personal change outside because our fear tells us that opening the door and inviting a new guest into our home is just too dangerous.
I had a very interesting conversation with my friend Jeff Clark two Monday’s ago in Half Moon Bay. Jeff is the first guy to surf Mavericks and is a legend in terms of big wave surfing. The waves were pumping, so on my way home from UCSF I stopped and watched the 40-50 foot face waves and the surfers riding those giants. He wanted me to go out in his boat to watch, but I am not supposed to go in the ocean yet. The odds of getting really wet and potentially in a bad situation were not worth the risk.
We met up a couple hours later and had a great discussion about fear and moving from the known to the unknown. He said that for him he thrives at the moment he moves from what he knows he can do to the moment when he is uncertain about his ability. “If at that moment you revert to fear you will most likely not be successful, but if you go forward with faith using the skills you have…you can enter into a new zone of growth and skill, and then the unknown becomes known and you have reached a new level.” This process of growth creates confidence and makes the next situation in your life that much easier as you go from uncertainty to certainty…until you try and give it 100% you will never know what is possible.
The extraordinary effort is where our lives can explode, if we are open and grateful to whatever is standing in the doorstep and waiting to receive the invitation to come inside.
Sometimes what we fear most is not that our lives will turn out poorly, but we will actually find peace and happiness. So, we do nothing. We don’t allow happiness to walk inside because what would we have to complain about next? Somewhere behind our walls we have learned there is a false comfort with the predictable.
Look for the strength in your house and the weaknesses too. Take the chance to answer the doorbell and allow every experience inside. Treat each experience humbly.
Wait on your guest, serve your guest and don’t rush your guest to leave. When the visit is over you may find your house is in better shape than it was before your guest came to visit.
After all, Life, our guest, won’t be staying long.
Lots of things to give updates on today after my visit with the doctor:
This last week since my infusion, I have at times been nauseated and a little bit dizzy and have experienced a little bit of chemo mouth (everything taste like metal) as well as being tired. My immune system is low and I will try and get thru this next week without picking up any illnesses.
It is interesting how each week there has been a different reaction and symptoms. Once again the lesson of expectations and surprises continues to teach me that we must be open to whatever appears at our door and to expect the best and be prepared to welcome whatever arrives with a smile and conviction to appreciate the journey whatever it may be.
My next chemotherapy will be January 4, 2016.
I failed to mention that yesterday when Emmett took me to UCSF he passed out while I was giving blood. The poor guy was just watching the nurse poke me and pull out 7 vials of blood and low and behold we turn around and just saw him fall like a tree to the tile floor. His head hit the floor with such a beautiful thud and he was as white as a ghost. The nurses left me and immediately focused on Emmett for the next 5-10 minutes. He was out for a few minutes and can’t remember much of the situation. One of the nurses was hysterical and it actually was funny watching them try and bring Emmett back to reality. We immediately went and ate breakfast and Emmett started to come back to his normal self. It was nice to be a caretaker for a few moments!
I hope you all have a wonderful holiday season with family and friends!
I love all y’all!
Good News…I have been feeling pretty good since my Infusion on the 23rd of November, compared to the first round of chemo. The doctor warned me that the “cumulative effect” with chemotherapy would make me more tired and the side effects would be more pronounced, those things so far have not been true, so I am stoked!
In speaking with the doctor on the 30th of November he said that my body is reacting well to the drugs and that one of my tumor markers (Carcinoembryonic Antigen-CEA) moved in a positive direction and he was excited about that. For those who speak this language, my serum level was 286 on 11/2/15 and it was 165.7 on 11/23/15. Bottom line: this is good news and could be contributing to me feeling better. For a person without cancer the score would be 0, so moving in this southward direction is very good.
The first real marker about how I’m doing will be on December 14th when I go for my next CT Scan and my next infusion. It will probably take a day or two to get the results. Hopefully I won’t wet my pants during this infusion!
It is a funny feeling going thru this because I don’t want to jinx myself by telling you that I have been feeling good since my last infusion. The program (food, sleep, medicines, exercise, etc.) I have been on is working for me. It is a tenuous situation where I just have to listen to my body and do what seems appropriate to keep feeling good. I don’t want to get behind and have to play catch up, so I try and really listen to my body and respond accordingly. It’s kind of like being in a boat on the ocean - if you get too comfy and start trying to untie your fishing line…boom! The next thing you know your stomach gets a little upset and you have to look at the horizon to feel better.
I’ve been eating a super-healthy diet that is mainly plant based with the ability to splurge on occasion! We started juicing all kinds of vegetables and fruits and it is quite tasty! I have maintained body weight, I try to walk every day and ride my bike whenever possible. Hopefully after these first 4 rounds of chemo the doctor will allow me to do more activities!
I appreciate all the power, energy, and prayers on my behalf and know they’re making a difference!
I have been reading “You are the Placebo” and I like the book- basically it’s about the power of the mind and the impact on your body if the mind believes something. In one study at the University of Toledo, researchers divided a group of healthy volunteers into two categories---optimists and pessimists---according to how the volunteers answered questions on a diagnostic questionnaire.
In the first study, they gave the subjects a placebo but told them it was a drug that would make them feel bad. Their study results indicated the pessimists had a stronger negative reaction to the pill than the optimists. In the second study, the researchers gave the subjects a placebo as well, but told them it would help them sleep better. The optimists reported much better sleep than the pessimists.
The takeaway for me is that in exactly the same environment, those with a positive mind-set tended to create more positive situations, while those with a negative mind-set tended to create negative situations.
Given my experience over the last few weeks I imagine you can see why this is interesting to me. I actually expected to be worse and then it never happened physically. I’m not quite sure why, but I am an optimist for sure!
One of my colleagues said a funny thing once, “For Greg, hope is a strategy. It seems to always work out.” What he didn’t realize (and I didn’t tell him) was the scope of contingency-planning I have in my back pocket given the knowledge that things often don’t play out the way you hope or expect, so what you must be ready to do is respond quickly and decisively with lots of HOPE…so I guess Hope is a strategy!”
In exploring the question of how many medical healings are due to the placebo effect, modern day research shows it can range anywhere from 10-100%. Researchers, when pushed to be more specific, say they believe on average that 35% of healings are due to the placebo effect.
I also find myself wondering what percentage of illnesses are due to the effects of negative thoughts and whether the percentage is likely higher than we realize. This makes sense to me since it seems so many mental, physical, and emotional health conditions seem to come from nowhere and are hard to explain. It’s simplistic to suggest everything is ‘in our head’, yet I believe our attitude and way of thinking definitely has an impact. The research over the last several decades clearly points to some key truths:
Anyway, I find myself in a unique position right now to explore the topic and I find it interesting to think about. Thanks for all the Positive thoughts!
In one of my earlier entries I talked about the notion of Social Capital and have felt myself return to this concept this week. This topic is really interesting to me and something I believe is worth a much deeper exploration.
What is Social Capital: It is the collective value of your various social networks that trust you as a person and are willing to help you based upon the reciprocity that occurs because of how you made that person feel during past interactions. It is the unspoken currency that makes people feel valued, worthwhile, and important. The funny thing about it is that your intent is not to build any “net worth” in fact from the surface it could seem that you are decreasing your ability to create worth. What most people really desire is connection with other humans in a genuine and pure way, and you get that when you serve others in whatever way you are capable.
In my case, I continue to be amazed by the actions of my network these past few months:
I could go on, and I hope you can see why I am again reflecting on this concept of “Social Capital.” There is true tangible and intangible value in all of the above things that make my life more interesting, valuable, easy, fast, efficient, fun, exciting, safe, etc. The intangible part is that others who are removed sometimes benefit from the acts of people and they just happen to be in the right place at the right time.
I was pondering this the other day as I was driving home. We just had a major storm in Santa Cruz and the tide was high leaving debris all over the roads. I drove by the harbor and a huge log was in the middle of the street and was blocking traffic - no one was doing anything about the log but traffic was a mess - so I quickly thought “I think I could get that log out of the way.” I pulled over and tried to recruit 2 people to help me to move the log. Both of the men said no. One guy said, “someone will come along from Public Works at some point.” Confused by their lack of being willing to help, I safely stopped the traffic and pushed the log out of the way myself. I had one of those Hulk Hogan moments!
Everyone drove by and cheered, honked their horns, gave me a thumbs up, a big smile, yelled cool stuff at me, and within minutes’ traffic was flowing again. For a minute I had an infusion of positive vibes! Many people intangibly benefited from my actions because it allowed people to get to work/school on time, saved gas, maybe prevented an accident, kept someone in a good mood, created less stress, observed someone taking action for their benefit, etc.
If we looked at Social Capital from an organizational perspective, there are many companies today that are trying to give back to the communities where they exist---Xactly Corporation (a super cool start up in San Jose www.xactlycorp.com) follows the the 1-1-1 pledge, where they give 1% of their product away, 1% of their employee’s time away, and 1% of our resources to support the effectiveness of the social sector. Many companies have similar programs and it builds their social capital. The generations of today (for the most part) are very in tune with not just working to make money, they want to do cool work and make a difference, there is much to learn from the rising generation!
When we all leave this life, we will take our knowledge and relationships, that’s all. Our earthly existence is a short period of time and I worry that I sometimes I get focused on the wrong things that don’t really mean that much in the end.
I love all of you and hope you have a great holiday season! They say you are a combination of the people you hang out with, if this is true, I owe all of you a huge thank you for what you have given me past, present, and future!
150 THINGS YOU CAN DO TO BUILD SOCIAL CAPITAL? (Harvard’s Kennedy School)
Social capital is built through hundreds of little and big actions we take every day.
1. Organize a social gathering to welcome a new neighbor
2. Attend town meetings
3. Register to vote and vote
4. Support local merchants
5. Volunteer your special skills to an organization
6. Donate blood (with a friend!)
7. Start a front-yard/community garden
8. Mentor someone of a different ethnic or religious group
9. Surprise a new neighbor by making a favorite dinner–and include the recipe
10. Tape record your parents' earliest recollections and share them with your children
11. Plan a vacation with friends or family
12. Avoid gossip
13. Help fix someone's flat tire
14. Organize or participate in a sports league
15. Join a gardening club
16. Attend home parties when invited
17. Become an organ donor or blood marrow donor.
18. Attend your children's athletic contests, plays and recitals
19. Get to know your children's teachers
20. Join the local Elks, Kiwanis, or Knights of Columbus
21. Get involved with Brownies or Cub/Boy/Girl Scouts
22. Start a monthly tea group
23. Speak at or host a monthly brown bag lunch series at your local library
24. Sing in a choir
25. Get to know the clerks and salespeople at your local stores
26. Attend PTA meetings
27. Audition for community theater or volunteer to usher
28. Give your park a weatherproof chess/checkers board
29. Play cards with friends or neighbors
30. Give to your local food bank
31. Walk or bike to support a cause and meet others
32. Employers: encourage volunteer/community groups to hold meetings on your site
33. Volunteer in your child's classroom or chaperone a field trip
34. Join or start a babysitting cooperative
35. Attend school plays
36. Answer surveys when asked
37. Businesses: invite local government officials to speak at your workplace
38. Attend Memorial Day parades and express appreciation for others
39. Form a local outdoor activity group
40. Participate in political campaigns
41. Attend a local budget committee meeting
42. Form a computer group for local senior citizens
43. Help coach Little League or other youth sports – even if you don't have a kid playing
44. Help run the snack bar at the Little League field
45. Form a tool lending library with neighbors and share ladders, snow blowers, etc.
46. Start a lunch gathering or a discussion group with co-workers
47. Offer to rake a neighbor's yard or shovel his/her walk
48. Start or join a carpool
49. Employers: give employees time (e.g., 3 days per year to work on civic projects)
50. Plan a "Walking Tour" of a local historic area
51. Eat breakfast at a local gathering spot on Saturdays
52. Have family dinners and read to your children
53. Run for public office
54. Stop and make sure the person on the side of the highway is OK
55. Host a block party or a holiday open house
56. Start a fix-it group–friends willing to help each other clean, paint, garden, etc.
57. Offer to serve on a town committee
58. Join the volunteer fire department
59. Go to church...or temple...or walk outside with your children–talk to them about why its important
60. If you grow tomatoes, plant extra for an lonely elder neighbor – better yet, ask him/her to teach you and others how to can the extras
61. Ask a single diner to share your table for lunch
62. Stand at a major intersection holding a sign for your favorite candidate
63. Persuade a local restaurant to have a designated “meet people” table
64. Host a potluck supper before your Town Meeting
65. Take dance lessons with a friend
66. Say "thanks" to public servants – police, firefighters, town clerk…
67. Fight to keep essential local services in the downtown area–your post office, police station, school, etc.
68. Join a nonprofit board of directors
69. Gather a group to clean up a local park or cemetery
70. When somebody says "government stinks," suggest they help fix it
71. Turn off the TV and talk with friends or family
72. Hold a neighborhood barbecue
73. Bake cookies for new neighbors or work colleagues
74. Plant tree seedlings along your street with neighbors and rotate care for them
75. Volunteer at the library
76. Form or join a bowling team
77. Return a lost wallet or appointment book
78. Use public transportation and start talking with those you regularly see
79. Ask neighbors for help and reciprocate
80. Go to a local folk or crafts festival
81. Call an old friend
82. Sign up for a class and meet your classmates
83. Accept or extend an invitation
84. Talk to your kids or parents about their day
85. Say hello to strangers
86. Log off and go to the park
87. Ask a new person to join a group for a dinner or an evening
88. Host a pot luck meal or participate in them
89. Volunteer to drive someone
90. Say hello when you spot an acquaintance in a store
91. Host a movie night
92. Exercise together or take walks with friends or family
93. Assist with or create your town or neighborhood's newsletter
94. Organize a neighborhood pick-up – with lawn games afterwards
95. Collect oral histories from older town residents
96. Join a book club discussion or get the group to discuss local issues
97. Volunteer to deliver Meals-on-Wheels in your neighborhood
98. Start a children’s story hour at your local library
99. Be real. Be humble. Acknowledge others' self-worth
100. Tell friends and family about social capital and why it matters
101. Greet people
102. Cut back on television
103. Join in to help carry something heavy
104. Plan a reunion of family, friends, or those with whom you had a special connection
105. Take in the programs at your local library
106. Read the local news faithfully
107. Buy a grill and invite others over for a meal
108. Fix it even if you didn’t break it
109. Pick it up even if you didn’t drop it
110. Attend a public meeting
111. Go with friends or colleagues to a ball game (and root, root, root for the home team!)
112. Help scrape ice off a neighbor’s car, put chains on the tires or shovel it out
113. Hire young people for odd jobs
114. Start a tradition
115. Share your snow blower
116. Help jump-start someone’s car
117. Join a project that includes people from all walks of life
118. Sit on your stoop
119. Be nice when you drive
120. Make gifts of time
121. Buy a big hot tub
122. Volunteer at your local neighborhood school
123. Offer to help out at your local recycling center
124. Send a “thank you” letter to the Editor about a person or event that helped build community
125. Raise funds for a new town clock or new town library
126. When inspired, write personal notes to friends and neighbors
127. Attend gallery openings
128. Organize a town-wide yard sale
129. Invite friends or colleagues to help with a home renovation or home building project
130. Join or start a local mall-walking group and have coffee together afterwards
131. Build a neighborhood playground
132. Become a story-reader or baby-rocker at a local childcare center or neighborhood pre-school
133. Contra dance or two-step
134. Help kids on your street construct a lemonade stand
135. Open the door for someone who has his or her hands full
136. Say hi to those in elevators
137. Invite friends to go snowshoeing, hiking, or cross-country skiing
138. Offer to watch your neighbor’s home or apartment while they are away
139. Organize a fitness/health group with your friends or co-workers
140. Hang out at the town dump and chat with your neighbors as you sort your trash at the Recycling Center
141. Take pottery classes with your children or parent(s)
142. See if your neighbor needs anything when you run to the store
143. Ask to see a friend’s family photos
144. Join groups (e.g., arts, sports, religion) likely to lead to making new friends of different race or ethnicity, different social class or bridging across other dimensions
“Everything we needed to know we learned in Kindergarten”
I realize I just posted a couple of days ago…but given the events of yesterday…and that many of you are in commute for Thanksgiving…I hope I can provide a little bit of levity while you are stuck at the airport or in traffic or dealing with mother in laws/father in laws, grandkids, kids, etc.
Health Update: all went well yesterday with my Infusion…no major issues.
Funny part of the day:
Every week I get my blood tested, some weeks they take more than others…yesterday when they started taking my blood...after two vials my blood stopped flowing. They said, “have you drank anything this morning and I said, “no”, so I had to drink a bunch of water, an Odwalla protein shake and then my blood started flowing again. I tell you this because this excessive drinking is context for the rest of the story.
When I got back to Mt. Zion Hospital and began my infusion (I have to shuttle between Parnassus and Mt. Zion for various tests—they are two different hospitals that are part of UCSF) I needed to go to the bathroom. It is no small ordeal given the set up when you get an infusion, I have two IV’s in me…one of them on the right arm and one on the left and there are four different lines running into the IV. The bags of fluid are on a tower that allows the fluid to drip down. Also on the machine are monitors and lights, it makes noises and annoying sounds and it is about 7 feet high. The total amount of fluid they put into you is about ¾ of a liter…so that is quite a bit combined with all the water and Odwalla I had been drinking.
I got to the bathroom and someone was in it…so I patiently waited and after a couple of minutes I knocked just to make sure someone was alive in there…an older lady screamed something back and a few swear words, so I just sat patiently…clearly thinking her situation was worse than mine. A nurse came by and said I should try another bathroom…so I tried and that one was busy as well. So I thought, the old lady has to be about done…so I walked back (more like skipped…get the visual…I was in a hurried situation but trying to look totally in control as I passed the nurses station and the other patients) to the original bathroom…and by now I was feeling it…I needed to go. Something about the power of the mind when you get close to a bathroom…that force is real! The power of suggestion moves things along for sure! A nurse came by and knocked on the door and the lady yelled back “I am going as fast as I can.” We both just looked at each other and said, “well…she is on her own program…no hurrying her up.” I learned later she had been coming there for 14 years and was a grumpy old lady.
At this point, I am in serious need to go, I start doing the old fox trot in place, trying to stay out of view ( I actually found a little area that was a dead end and just walls and tile floor where I could see the bathroom door…I start to try and pinch off the flow as best as possible, I even go into the deep crotch sitting position to try and alter the flow…but my IV connections only allowed me to squat so low, I tried to think of random topics to avoid thinking about going to the bathroom…but what can I say…the machine was still flowing IV into my veins and I could just not keep it in…I remember thinking…“I gotta go and it is only getting worse with each drop into my veins of this IV!” I looked around to see if there was somewhere I could go…the only option was straight to the tile floor…I pondered if I should make that move…and I just could not do it right on the floor…so right there in the infusion room around a corner…I wet my pants…I felt that warm feeling flow down my legs, saw the nice levis get a little darker, my shirt tail and t-shirt got into the flow as well as my compression socks given the position I was in…and well there you have it…I was a mess…sock to shirt and everything in between. The cute nurses that I have been successfully building/flirting with over the last month…now they see me in a completely new way…not quite sure how I am going to recover from this one. They were starting to like me and even saved me the best spot for my infusion that day. Who knows where they will put me next time?
The old lady finally came out of the bathroom, but it was obviously too late. I made it into the bathroom and I still had more to go…so I was successful in pinching some of it off…and at this point I saw that as a real personal victory and was celebrating it in my mind! I was proud of myself! In moments of horror you must find an island of hope and feel some kind of victory!
To make matters worse, while I was in the bathroom all my alarms started going off and the alarms are piercing…pretty soon I had 3 nurses knocking on my door wondering if all was ok. The alarms go off on their own when it is time to switch to a new drug or they can go off if the patient hits certain buttons…so they had no clue why it sounded like a sound machine in the bathroom.
I had to admit to the nurses what happened and I tried to make them laugh because the only alternative was to cry…they wanted to come in and stop all the noises and I was just trying to figure out how in world I was going to survive the rest of my infusion with soiled clothing?
I finally let them in, and they were proactive enough to bring me some scrubs to wear…but only the bottoms because why would a guy mess up his shirt if he wet his pants?…so that solved my “what am I going to do with my pants but not my shirt!” When I left the bathroom, I saw that my favorite nurse had discovered my urine in the little corner were I was sitting before making it into the bathroom and she had her full protective clothing on like it was some major chemical spill! They were all very nice…saying that there is nothing they don’t see…and this was minor…but let’s be clear…they were trying to make me feel good!
The hardest part was my shirt…I could not get my shirt off because of the IV’s…there was no way to do without cutting off my shirt or undoing the IV’s…it was a serious predicament. I walked back to my infusion area with my urine soaked thick cotton shirt that was beginning to smell…my favorite nurse saw the dilemma…she was kind not to make me explain the entire scenario! We finally undid the IV’s so I could take my t-shirt and shirt off that were all messed up! It was no easy solution…there I was almost naked with all these nurses trying to figure out a solution, my scrubs were barely staying on around my waste, I was glad I still had somewhat of a summer tan left over and did not completely look like a loser…I actually found the situation “Fraught with Humor” (a great line from the Parent Trap Movies)…so I tried to create some fun at my expense!
I could not help but reflect back that the last time this happened to me was in kindergarten at Nimitz Elementary in Sunnyvale, CA…it feels like yesterday but it was 48 years ago. The bathroom was connected to the classroom and for some reason I could not get the pants down in time and boom…I felt that warm feeling flow down my legs. I remember being so embarrassed that I did not come out of the bathroom. They thought I was lost and couldn’t find me for some time, I think they even called my mom at home wondering if I wandered home…and then in the corner of the bathroom there I was. I remember getting sent home and then I had to have a back up set of clothes at the school. I remember not wanting to tell the other kids why I had extra clothes. I was hoping to make it 50 years before I re-enacted that same experience…but I guess I will settle on 48!
The nurses gave me a nice plastic bag to take my soiled clothes back home in…very similar to the bag I used in Kindergarten! Jan has declared that maybe it is time to add “Depends” to the shopping list before I go up for my next infusion!
I told Henry the story last night and he said he would have found a plant to go in…nice suggestion but no plants were around in my private corner. I am open to other good ideas!
Time + Tragedy = Humor…so let the humor begin!
Have a great holiday!!
“Why does Cancer/other major life events help to change the Conversation?”