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!