Entry #22 - Health Update
Quick Blog Health Update:
I consulted with my doctors last Friday after getting the results back from the recent CT scans and MRI’s and the good news is that things seem pretty stable across the board. The brain was stable, the spine seems stable, and we are still waiting to get a read on the lungs. I’ve got to drain some fluid off the lungs to get a more clear picture of what is going on. Hopefully that will happen this week.
I meet with a new doctor this week at Stanford to assess additional treatment options to help attack the cancer on the spine and a spot on my liver. For the most part we will hold course and have scans in another 6-9 weeks. So basically, great news and looking forward to ongoing treatments and maybe a few new ones to be added as we uncover new information.
I had the opportunity to visit with a Palliative Care Physician and her team a couple of weeks back. I had never heard of such a role, but several nurses suggested it would be worth my time.
Wikipedia (the new modern-day encyclopedia some of us used to pull off the shelf to learn stuff back in the day): Palliative care is a multidisciplinary approach to specialized medical care for people with life-limiting illnesses. It focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the terminal diagnosis.
The visit was interesting in that the doctor asked me lots of questions about how I was doing and inquired about my medications. She asked me how I felt about my drugs and if I thought they were working for me. This is a difficult question for me, because I honestly don’t really know if the drugs are working for me, I mean I think they are, but I don’t really know.
She is talking not just about the Chemotherapy and Radiation I have received but she is talking about all of the medicines they give me to counter act the Chemo and to try and improve my quality of life. I don’t really know if they are working…I try different arrangements of the drugs to see how I feel but it is not easy to figure out what makes me feel better. There are also drugs I am taking to improve my vitamin B and D levels and other things to improve my overall health.
She suggested some drugs I could take and my initial reaction was, “I don’t need to take those drugs,” “Why would I need to take those kinds of drugs?” she said, “because they can boost your energy and give you more life during the day when you want it.”
I had a preconceived notion of these drugs based upon a lifetime of hearing about them and knowing others who took them for certain reasons such that I believed they were not something that I needed. My frame of reference colored my opinion and my beliefs were blocking my ability to be open to something new. I realized that I have always been a person that does not even like to take an Advil, I hate taking pills, I have always believed that if you eat right, sleep well, exercise, participate in a good community that pills probably will not help make your life better.
She challenged my view by saying in your current state, the medicines you are taking are killing all of your cells, both good ones and bad ones, and if you don’t do anything to help yourself, you are in a position where your body cannot just fix itself. You must learn to love the drugs I am suggesting for you and to take your pills and appreciate that they are there to assist you…not hurt you…and that your body does not have the capability at the moment to repair itself, so you need help.
This was tough for me to hear and actually it was not until Jan debriefed the meeting with me and pointed out that my frame of reference or belief system was getting in my way and that I needed to be open to new ways of thinking and framing up of the situation.
I am learning to love and appreciate the various sets of drugs I can take, I am choosing to believe they can help me fight cancer and improve the quality of my life. Like anything, if we believe it is working, it probably is and visa versa if we believe whatever we are doing is not working, it probably won’t work!
Since my meeting I have done some research and found they are doing some interesting things at UCLA that I think speak to some of my reflections and is worth checking out for those with an interest in the intersection of various things that promote healing and well-being.
The Norman Cousins Center for Psychoneuroimmunology at UCLA investigates the interactions between the brain and the body, the role of psychological well-being for health and recovery from illness, and the translation of such knowledge into effective behavioral strategies that prevent disease, promote healing and enhance well-being across the life span.
We all face beliefs about ourselves or others that limit our ability to see something new. I challenge each of you to find one thing to alter or shift that might allow you to see someone, yourself, a situation, a family dynamic, a work challenge, etc. in a new way. As we all do this, it really makes us better understand people and things and opens us to learning. I am grateful that I have done this with my drugs and I’m looking for new things every day to broaden my horizons!
Entry #21 - Health Update
Since my last entry many things have happened. I have been waiting for the right time to write a new entry and I am finally getting around to it. I will give you the update…and please know that I am sharing my journey to help you know what is up with me and to inform you about the process and not to make you feel sorry for me in anyway. There is a balance about what to share and not share…so hopefully what I share is informative and interesting...because it really is quite fascinating.
You will recall I started a new chemo treatment on 2.17.17 and just after that on Feb 22, 2017, I had a brain MRI. When I received the results from that test, we discovered that my cancer had spread to my head. Upon discussion with the doctors we decided to do Full Brain Radiation to go get it.
I had to stop the chemotherapy treatment because you cannot do both radiation and chemotherapy at the same time. On March 3, 2017, I started Radiation. We opted for 14 radiation treatments over the course of four weeks. Radiation was quite easy and simple…it literally took about 5 minutes and boom you were done. I went at the same time every day to be consistent…we started on Thursday March 1st and then went every week day for 14 total days. We opted for 14 treatments to allow me to get less radiation in each treatment because the doctor believes that the long-term impact is less harmful if you get more treatments. The standard number of days is 10 for this procedure.
While I was getting my radiation, I went and got an MRI of the Spine. The results from that MRI showed that my cancer had also spread to my spine…so we now had a decision to make relative to how to handle that situation. One option was whole spine radiation and the other was tbd.
In conversing with the various doctors, we decided that whole spine radiation would be too much to handle as all your organs are impacted if you radiate up and down the spine. So we decided to change my chemotherapy to a new drug called Irinotecan which has the ability to penetrate the central nervous system and hopefully impact the cancer along the spine. FYI-most chemotherapies cannot penetrate the brain/blood barrier…so this drug is unique in that it can penetrate the Central Nervous System.
On March 31, 2017, I received my first infusion of Irinotecan and have been receiving it 3 times a month. I will get my next CT scan and a new set of MRI’s on May 15th to see how I am doing and to assess if we are containing the growth of my cancer. At that point, we will then determine if we stay the courses or need to pivot in a different direction.
I am feeling good and very positive on my new chemo treatment. I have been a little more tired than in the past and I can tell that the cumulative effect of my treatments is beginning to impact me. I came in with a big well of reserve energy which has been a huge help to me. The desire to go and do things has become a little more challenging but I have found that if you just set your mind that you are going to do something that you can rise to the occasion.
I have gained great strength in reflecting on my belief system and knowing that this challenge is part of my path and you just have to step into it and find the joy in the journey.
My Latter-Day Saint belief system teaches us that before we were born, we all lived together as spirits in a pre-earth life. We learned that we would face trials and tribulation along with happiness and joy on earth. We all had the choice whether we wanted to come to earth, and all of us on earth made the choice that it was worth it.
The purpose of this life is to have joy and to build our knowledge and intelligence, and to gain as many experiences as possible to help us grow and develop as human beings. Clearly a big part of this life is the relationships and people we meet that help to teach us and guide us to make good choices along the path. I believe that we all committed to helping each other and that there is no mistake in who our friends and family are, and that we all looked forward to being with each other along this journey called life.
So assume with me the following…if we chose to come to earth we must have known there would be challenges and trials along the way and also amazing times given that the purpose of life is to have joy. So in my situation, I am thinking that Cancer was a hurdle that I was willing to face. So now that it is here, my goal is to step into it, be positive, learn and grow from the experience and do everything in my power to try and beat it. Then we must trust God’s will after we do everything we can to try and help ourselves.
With this understanding, I hope you can see the context for which I view my cancer. With this frame, I know that this challenge is for my personal growth and development and hopefully I will have the humility to use it to better myself and give service, empathy, and comfort to others who are in need and going through challenges of their own. My challenges are minor compared to the ones many of you are going through, and I feel so blessed to have so many people that care about me and send energy and prayers in my direction. It is impossible for me to not be positive with so many people cheering for Team Maddog!
Lots of love for all of you!
By the way, if you need a new bracelet or never got one…let me or one of my family members know and we will get it to you.