Entry #11 Quick Update
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!