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Greg Madsen passed away last night, Monday, July 31st, in his home peacefully surrounded by family.
In lieu of flowers, The Greg Madsen Memorial Fund has been established in Greg’s memory as a way for his friends to show their love and support to the Madsen family. Donations can be made to the Greg Madsen Memorial Fund through any branch of Wells Fargo account 7393043901 (routing number 121000248) or checks can be made to: Greg Madsen Memorial Fund, 3821 Moana Way, Santa Cruz, CA 95062. Donations can also be made on Venmo, to @GregMadsenMemorialFund MadDog Memorial and Love Day Events:
Emmett outreach – Emmett is serving a Church mission in Nova Scotia. Fortunately, he was able to come home and spend some time with his dad and family 2 weeks ago – a huge blessing! It would be nice to send Emmett letter, card, photos, or emails. Elder Emmett Madsen 204 Brownlow Ave Unit 155 Dartmouth Nova Scotia B3B 0M4 CANADA [email protected] Tributes to Greg can be posted here: http://www.gregmadsen.com/health-updates/tributes. Messages to the Madsens – To send a message to the Madsen family, you can email [email protected] or use the site contact form. Please spread the word to others who knew Greg. 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. Reflections: 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. https://www.semel.ucla.edu/cousins 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! 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. Reflections: 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! Greg 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. 2.21.17
Health Update: I had a CT Scan on February 3, 2017 and the results of the scan showed that my cancer had increased on the right lung and we had a new evidence that it had spread to the left lung. Due to these findings, I have come off the Immunotherapy clinical trial (CPI-444 + Atezo) at UCSF and started standard Chemotherapy at Stanford on 2-17-17. I started with Docetaxel last Friday and will come back again in three weeks for another infusion. At that time, we might add another chemotherapy to the mix depending on how I am progressing. I am excited because I am getting better every second since I had my infusion! It is too bad the immunotherapy I was on did not work, but we knew it was a risk and was worth taking it in case it did work. I was in good enough shape to give it a try. The reason I am choosing to go with standard chemotherapy for my 4th line of treatment is that I need to get my cancer under control and I know that chemotherapy from my past treatments works on me and I am hoping that it will make me feel better overall. In the meantime, I will stay associated with UCSF and Stanford and Huntsman and others to continually be looking for some other treatment that might be the right choice for me and my cancer. I will continue to explore alternative treatment options to aid me as well in this fight against Cancer. Reflections: I had real hope that maybe the trial I was on would be a great solution for me. Clearly it has not worked and so I am back to the drawing board…one door closes and another one opens…and I look to the future with great hope knowing that if I do all I can, work with others, and keep a positive attitude that we will find a solution. So the journey continues on and I am learning deeply about appreciating the process and how lucky I have been for so many years to have had very little physical and mental ailment. I am gaining a deep appreciation for people who inherently lack the desire to do things, and to be active in all walks of life. I am learning about how to balance “letting your body heal” and continuing to push your body to get stronger with exercise and activity. It is not easy to balance which voice is in your head and then knowing what the appropriate course of action should be. I don’t want to be the stubborn man that does not let the body regenerate itself and at the same time I don’t want to be the lazy man that does not push himself to add value to the world at large. It is a new place that I find myself and hence I must learn new behaviors to deal with my mental and physical abilities. Learning is not always fun and is not easy, but it is the purpose of this life. Thanks again for all the love, support, notes, prayers, comments, thoughts unspoken, calls, gifts, visits, etc. I know for sure that I am a very lucky human being to have the best friends and family in the world...nothing is more precious to me than the relationships I have and the knowledge I have gained from all of you. Knowing you all care about me gives me huge strength and I am most appreciative of your faith in me! Cancer going down! Have a great day! Love, Greg I had my last infusion on October 31, 2016 and since then I have been searching for my next line of treatment as the scans showed that I had enough disease progression to warrant changing up my treatment plan. It has been an interesting path that I will tell you about. I have chosen to be part of a trial at UCSF starting on December 14th and I am excited about the possibilities.
My story in getting to this point is most interesting and I only tell you the story so you can see how wacky the process is and how much room there is to enhance health care in the future. I do not tell you this story so that you feel sorry for me…it is purely for entertainment and I hope you enjoy it. I trust that I am in the right trial because I did everything possible, and after doing all you can do…you have to trust the process…and know that things happen for reasons that are beyond our own comprehension. When I had my CT scan on 10/31 and the results came back that we had some disease progression…it became clear that given the last few scans and CEA (protein marker) that it was time to begin looking for the next level of treatment. I felt pretty good but the trend line was saying that my disease was growing so it was time to find something new. To get on a new trial, you typically need a 28 day “Wash Out” period where you get rid of the Chemotherapy that is in your body. So that meant that on 11/29 I could potentially start a new trial if everything worked out perfectly. So I began my search by asking my doctor at UCSF, I met with my doctor at Stanford, I reached out to my doctor at Huntsman Cancer Center, talked to Dana Farber in Boston, and I began to get ideas of potential trials that would work for me. At UCSF there was an immunotherapy trial (CPI-444 +/- Atezo) that I went and interviewed in person with the doctor and then it was discovered the same trial existed at Stanford…so I reached out to them thinking that it would be good to mix up hospitals for a change of pace and to save 3+ hours of travel time. I went and met with my Stanford doctor and in addition to the CPI-444 trial he had another one (Irinotecan + VX 970) that he thought might be good for me. I got excited about both of them and said let’s pursue them. In the meantime, UCSF came up with another trial (IL-10 +Opdivo) that seemed pretty cool. So I had three good options plus standard care that was available anytime. You might wonder…why not just go with standard care? A clinical trial allows you to test multiple drugs at once and potentially gives you access to something long before the general public could get it. If we knew how to cure my cancer, we would just go with standard care, but the evidence for how to solve my situation is not very conclusive, hence taking more of a risk is a smart path if I want to try and beat this cancer. Not knowing how to best prioritize my options and not actually knowing if I could get into any of the trials I needed a way to figure out which ones to pursue in what priority order. I imagine the process is like trying to date multiple people at the same time; keeping them all interested in you, telling them they are your first choice, and at the same time vigorously pursuing multiple options in case you are not accepted or one appears to have increased ability to help you. As some of you know personally…this can be an exhausting and an exhilarating experience at the same time! So it is tricky…they all require some sort of tissue samples, blood tests, interviews, CT Scans, EKG’s, etc. to make sure you fit the profile of what they are looking for. It is a lot of work and requires commitment to make it all happen…and in the back of your mind you wonder if you are even going to do the trial. Keeping your options open is a key principle when picking a clinical trial to participate in….and it is a key principle in life…successful people always have options…you want to try and never do things that will eliminate your options down the road…trials are the same way…so I pursued them all with energy and interest. The more you learn about each trial, you either get excited or less enthused, but you still have to pursue them because there are so many factors outside of your control that to eliminate your options would be foolish…and at the same time it is nice to have an internal monitor of which ones you are more interested in so you can go harder after those. Each day you learn various facts and information evolves in a very whimsical way such that you never quite know what the next phone call or email will entail. It is impossible to tell the story in sequential fashion but I will try and give you the narrative in an entertaining way. I decided that I was not smarter than the doctors on this particular issue…so I said to myself…let’s have a live conversation with all the doctors and I’d like to hear them battle it out in terms of which study would be most appropriate. Getting a phone call with 4-5 doctors is next to impossible…so I sent out an email to all my key folks and asked them to respond and prioritize which trials they would suggest and invited debate and discussion. This proved to be a good strategy and the team replied and I basically had my trials in priority order. I started to learn several things as I continued my pursuit…I learned by a phone call one night from the Stanford finance department that my Blue Shield Insurance was no longer accepted by Stanford. They had severed their relationship at the end of 2015. Strange because I have been visiting my doctor there on a somewhat regular basis and had just been paying the bills thinking we were in network. Given this news, I had to determine if I went to Stanford, how would I pay for the services? We learned thru research and discussion that you can pay out of network fees or you could fight your insurance company for “continuity of care” clause and continue seeing your doctor. I went to my Stanford appointment knowing that there were issues but hoping that we could work them out. Upon visiting my doctor he recommended a different trial for me at Stanford (Irinotecan + VX970) or the (CPI-444 Trial). After doing lots of research, discussions with Sacramento government people, looking into the laws…it all got so complicated that basically I gave up the fight for my right for continuity of care. I was denied care because my personal doctor was not the doctor leading the trial. Same hospital but different doctor was in charge. Seems crazy to me, but that was the rule. My doctor said, “there is also a law that says that no one can be disallowed from being part of a clinical trial.” So we pursued that angle and learned that only 3% of cancer patients do trials and they are in desperate need of people for trials so that learning can continue. Upon further discovery, we found that my particular health care coverage (which is expensive and is a PPO plan and is connected to Covered California in some way) has a clause in it that says they do not have to pay for trials. So basically there is a law and my insurance has a clause that gets them out of the law…seems crazy to me…but I’m in the midst of trying to figure out which treatment plan to go with and I am spending most of my time dealing with crazy things like this. Frustrating from my perspective as well as the doctor’s perspective. So bottom line, Stanford became a very difficult place to be seen. At the same time, I am pursuing my options at UCSF, the doctors identify another trial they think is even better and so I go and visit with the doctor, sign the consent forms, do some testing, and get a little excited about the new trial. I decided to email my Stanford doctor to let him know...that night I get an email back and he says (IL-10 + Nivolumab/Opdivo) is the same study we have here at Stanford and I did not even tell you about that one because it is only for Squamous Non-Small Cell Lung Cancer and you have Adenocarcinoma…so you can’t do that trial. I’m thinking, is there a possible chance my doctors at UCSF have a different trial or somehow they overlooked or did not know this fact? So I email them back and ask…”Are you sure I can do this trial?” After a couple of days of exploration, the doctor from Stanford is correct…I can’t do that trial…I don’t qualify. In the meantime, the trial coordinator from Stanford calls and says we have some creative ways to get you into a trial…it required filling out a bunch of paperwork and I was going to begin the process to get in the (Irinotecan + VX970) trial. So lots of options floating around and lots of possibilities…I am keeping them all alive as best as possible. In the meantime, the folks from Huntsman Cancer Center tell me about a trial (Virus + Keytruda) that seems quite interesting…the question is when the trial will open again for new patients and do I want to travel for it? In the meantime, I am going to UCSF to get further screening done for the CPI-444 Trial which was not my first choice due to the randomization that happens with the trial…you are not guaranteed to get one of the drugs (Atezo)…so it is a little more risky than the for sure path. As I was driving home from UCSF, still not sure what to do…I get a call from Stanford and they tell me I can’t do the Irinotecan study because some other patient signed the papers to start the trial and they have to wait and see how that patient does before they let someone else on the trial. The guy actually said, “we have to wait and see if he dies before they put someone else on the study drug.” I was listening and said to myself, “blessing in disguise.” From all of this I am honestly finding the situation fraught with humor and I was just going with the flow knowing that things would work out…and anxious to see what the next phone call would bring. I continued to pursue the Huntsman option and eventually found out they could not realistically get me on the trial until January…so the only option left for me was the CPI-444 trial at UCSF…which is the first trial that I started to explore. So after a very interesting journey and several weeks of trying to figure out the right thing, I believe the trial I am going to start is the right one for now and I am excited to get going. I got randomized to receive the Atezo, so I was real happy to hear that news on the 13th of December. I have appreciated the calm assurance that the right thing will happen. The good Lord teaches us that the Lord will bless you after you do everything you can do to help yourself. If this is true, I will be blessed. Have a wonderful holiday season with your family and friends and enjoy the season for what it teaches us about how to love and serve others. I will be spending wonderful time with my family and friends enjoying the great outdoors up in the mountains…hopefully shredding the POW! Lots of love and greetings towards all of you for your kindness and heartfelt love towards me and my family. I have been a recipient of human kindness beyond my wildest dreams. Greg I know it has been awhile since my last update…basically it is great news. I have had several scans and while my cancer has grown back a little each time, my CEA protein marker has dropped overall (it goes up and down on a regular basis but the overall trend is downward), and I have been feeling pretty good. With all those factors combined we have opted to stay on the same treatment plan until we see more aggressive growth of the cancer.
So this is fantastic news from the doctor’s perspective. Many patients (93%) in phase I trials only last to the first scan…so the fact I have been on this trial for almost 8 months is really amazing. I still go to UCSF every week for infusion and take chemo pills on a daily basis. To manage the various side effects I give myself shots daily and also take 10+ pills and various syrups or drinks daily as medication. The cumulative side effects of these drugs is starting to impact me in ways I just did not think imaginable. The latest is my finger and toe nails are starting to separate from the skin, are puffy, and it makes me nervous doing just basic activities for fear I will pull them off. My wonderful wife takes the time to tape them down to give me a sense of confidence, but I have to be quite careful and, well, I am not so good at that. To surf, I am planning on wearing gloves and booties and I need help taking on and off my wet suit because I really don’t have much strength in my finger tips to pull it off and on…if only the water was warmer! I could go on with other side effects…but it is quite interesting how these drugs impact your body and mind and energy, such that the biggest task the nurses and doctors face is helping me to manage them so that I can maintain a lifestyle that is reasonable. We continue to be testing different drugs and combinations on a weekly basis and I am very pleased with how I am doing and what we are learning. I am enjoying working on a regular basis and finding great fulfillment in helping our clients succeed. I really appreciate the support of my colleagues and everyone around me. I will have another CT Scan in a couple of weeks and from that scan we will again determine whether to stay on the path or explore a new treatment option. I am so thankful for the love and support I feel from all of you…it truly is motivating and inspiring and helps me when I am feeling down or wishing my new normal was my old new normal…and I am learning to find joy in the journey and know 100% that my experience is the perfect experience for me and others to learn whatever is pertinent at this point in our path forward. My church holds a conference every 6 months where various leaders speak on different topics. There were many outstanding talks, and I wanted to share a link to one talk that I feel explains my feelings and thoughts perfectly relative to how I view my battle with cancer and I hope gives you a sense of perspective for whatever battles you are facing in your life. To watch the talk live click on this link (11 minutes), go to https://www.lds.org/general-conference/2016/10/god-shall-wipe-away-all-tears?lang=eng (also includes the original footnotes). If you desire to read it, I have copied the text here. God Shall Wipe Away All Tears By Elder Evan A. Schmutz Of the Seventy As we exercise our faith in the Savior, He will lift us up and carry us through all of our trials and, ultimately, save us in the celestial kingdom. As part of our Heavenly Father’s plan, He allowed sorrow to be woven into our mortal experience. While it seems that painful trials fall unevenly on us, we can be assured that to one degree or another, we all suffer and struggle. It is my prayer that the Holy Spirit will guide us to a greater understanding why this must be so. When we view the difficult experiences of life through the lens of faith in Christ, we are able to see that there can be godly purpose in our suffering. The faithful can experience the truth of Peter’s seemingly contradictory counsel. He wrote, “If ye suffer for righteousness’ sake, happy are ye.” As we apply our “hearts to understanding,” we can increase in our ability to both endure our trials well and learn from—and be refined by—them. Such understanding provides an answer to the ageless question “Why do bad things happen to good people?” Everyone listening today is acquainted with some measure of loneliness, despair, grief, pain, or sorrow. Without an “eye of faith” and an understanding of eternal truth, we often find that the misery and suffering experienced in mortality can obscure or eclipse the eternal joy of knowing that the great plan of our Father in Heaven really is the eternal plan of happiness. There is no other way to receive a fulness of joy. God invites us to respond with faith to our own unique afflictions in order that we may reap blessings and gain knowledge that can be learned in no other way. We are instructed to keep the commandments in every condition and circumstance, for “he that is faithful in tribulation, the reward of the same is greater in the kingdom of heaven.” And as we read in scripture, “If thou art sorrowful, call on the Lord thy God with supplication, that your souls may be joyful.” The Apostle Paul, himself no stranger to affliction, drew from his own experience to teach with depth and beauty the eternal perspective that comes when we endure well and with patience. He said, “For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory.” In other words, we can know in the midst of our afflictions that God has provided an eternal compensating reward. Paul’s ability to speak of the trials, persecutions, and sorrows of his life as “light” afflictions belies the severity of his suffering, which was for him swallowed up by the eternal perspective of the gospel. Paul’s faith in Jesus Christ made all things bearable. Five times he was beaten with stripes, thrice with rods; once he was stoned; thrice he suffered shipwreck; often he was put in peril of death by drowning, by robbers, and even by false brethren; he suffered weariness and pain, hunger and thirst, and was imprisoned in the cold and in nakedness. Many of us have pleaded with God to remove the cause of our suffering, and when the relief we seek has not come, we have been tempted to think He is not listening. I testify that, even in those moments, He hears our prayers, has a reason for allowing our afflictions to continue, and will help us bear them. In an intimate and reflective passage, Paul tells us of an unnamed “thorn” in his flesh, which caused him great pain and brought him three times to his knees, begging the Lord to take it from him. In answer to Paul’s prayers, the Lord did not remove the thorn but did speak peace and give understanding to his heart, saying, “My grace is sufficient for thee: for my strength is made perfect in weakness.” With new understanding, Paul was able to accept and be grateful for the thorn he was given. He said, “Most gladly therefore will I … glory in my infirmities, that the power of Christ may rest upon me.” As we acquire this eternal perspective in our lives, our capacity to endure grows, we learn how to succor those in need of succor, and we come to appreciate and even express gratitude for the experiences God allows us to have as tutors in the path to eternal life. When we find ourselves laboring through tribulation, it can be difficult to see our trials as signposts on our personal trail of discipleship. But whether we find ourselves at times in the dark valley of despair or on the high road of happiness, learning from and feeling compassion for the sufferings of others can be a blessing. During a recent stake conference assignment I attended in the Philippines, my heart was broken as I learned of the tragic experience of Brother Daniel Apilado. Brother Apilado and his wife were baptized in 1974. They embraced the restored gospel and were sealed in the temple. Thereafter, they were blessed with five beautiful children. On July 7, 1997, while Brother Apilado was serving as the stake president, a fire broke out in their small home. Brother Apilado’s oldest son, Michael, rescued his father, pulled him from the burning structure, and then ran back into the house to rescue others. It was the last time Brother Apilado saw his son alive. Taken in the fire were Brother Apilado’s wife, Dominga, and each of their five children. The fact that Brother Apilado was living a life pleasing unto God when tragedy struck did not prevent the tragedy, nor did it make him immune from the sorrow that followed. But his faithfulness in keeping his covenants and exercising his faith in Christ gave him assurance in the promise that he will be reunited with his wife and family. This hope became an anchor to his soul. During my visit, Brother Apilado, now the stake patriarch, introduced me to his new wife, Simonette, and to their two sons, Raphael and Daniel. Truly, Jesus Christ can and will “bind up the brokenhearted.” In sharing Brother Apilado’s story, I am concerned that the enormity of his loss may cause many to think their own sorrows and sufferings are of little consequence in comparison. Please don’t compare, but seek to learn and apply eternal principles as you wade through the furnace of your own afflictions. If I may speak to you individually—“all ye that labour and are heavy laden”—may I suggest that your personal struggles—your individual sorrows, pains, tribulations, and infirmities of every kind—are all known to our Father in Heaven and to His Son. Take courage! Have faith! And believe in the promises of God! The purpose and mission of Jesus Christ included that He would “take upon him the pains and the sicknesses of his people,” “take upon him their infirmities,” and “succor his people according to their infirmities.” To fully receive these gifts our Savior has so freely offered, we all must learn that suffering in and of itself does not teach or grant to us anything of lasting value unless we deliberately become involved in the process of learning from our afflictions through the exercise of faith. Elder Neal A. Maxwell once shared what he had learned of purposeful suffering in these words: “Certain forms of suffering, endured well, can actually be ennobling. … “… Part of enduring well consists of being meek enough, amid our suffering, to learn from our relevant experiences. Rather than simply passing through these things, they must pass through us … in ways which sanctify [us].” I have observed in the lives and examples of others that exercising strong and abiding faith in Jesus Christ and His promises provides the sure hope of better things to come. This sure hope steadies us, bringing the strength and power we need in order to endure. When we can link our suffering to an assurance of purpose in our mortality and more specifically to the reward awaiting us in heavenly places, our faith in Christ increases and we receive comfort to our souls. Then we can see the light at the end of the tunnel. Elder Jeffrey R. Holland has taught: “There really is light at the end of the tunnel. It is the Light of the World, the Bright and Morning Star, the ‘light that is endless, that can never be darkened’ [Mosiah 16:9]. It is the very Son of God Himself.” We can take strength in knowing that all the hard experiences in this life are temporary; even the darkest nights turn into dawn for the faithful. When all is finished and we have endured all things with faith in Jesus Christ, we have the promise that “God shall wipe away all [the] tears from [our] eyes.” I testify that God our Father and His Son, Jesus Christ, live and that They are keepers of promises. I testify that the Savior invites all of us to come and partake of His Atonement. As we exercise our faith in Him, He will lift us up and carry us through all of our trials and, ultimately, save us in the celestial kingdom. May I invite you to come unto Christ, endure well in faith, become perfected through Him, and have perfect joy in Him. In the sacred name of Jesus Christ, amen. Health Update:
On Monday the 15th of August I received the results back from my CT Scan on 8.8.16. I have been on this trial for 12 weeks that was focused on attacking my HER2 mutation and the first 6 weeks we had amazing results in terms of shrinking the tumor. The results showed that the Cancer has grown back a little since the previous scan. It is unfortunate that we could not keep it under control for a longer period, but it is not bad enough to change treatment immediately. We will begin monitoring with a weekly test of my protein marker, and I will have another CT Scan on September 5th to assess. You will recall there are three factors that determine how I am doing:
How I feel: I feel pretty good, I am operating a normal life for the most part, and my energy is good. I can tell that things have gotten a little worse over the last 6 weeks, but they are dramatically better than before I started the HER2 Trial at UCSF. I am able to work, exercise, and we have been doing a much better job of managing the various side effects associated with the 4 different chemotherapies I am taking. The one side effect we have not been able to get a grip on is my taste buds. I basically cannot taste how yummy the food and drinks are that I am eating. I have learned that many people suffer from not being able to taste and smell their food, so I am not alone. Food has become a “fuel” activity…so reallllly appreciate the simple ability of tasting God's creation of food! CT Scan: As I have described in the past, my tumor is hard to measure because it is poorly differentiated and is more like a cloud. The doctor looks at it and determines if the cloud is thicker or thinner so there is some subjectivity to it. After having looked at my scans many times…it is pretty easy to see when it is more or less cloudy than the previous scan. They pull up your scans and split the computer screen and they compare the exact images. The granularity of the scans is amazing and it is really interesting to compare and contrast the differences. My doctor says that he thinks I could be a Radiologist because I have gotten pretty good at it! Protein Marker: The third piece of data that we examine is my protein marker and it has been going down, which is great news. It is hard to tell exactly what this means because last time my protein marker was increasing and my CT Scan got better…so it is basically crazy to try and figure this stuff out. Net net you take this as a positive sign when the marker is heading in the southward direction. We will monitor this each week and see what direction it goes and then assess what this might mean. Path Forward: Of course you hope that every CT Scan gets better and better, but that clearly is not my situation at the moment. We will monitor all three factors above and instead of waiting 6 weeks for a CT Scan, we will have one every 4 weeks. The guidance is that if your cancer tumor has grown more than 20% or is directionally heading that way, it is time to look for new treatment options. My tumor has not grown back that much, but to be proactive we will begin to explore Line 3 treatment options should the next scan show that my tumor is continuing to accelerate. I will be working with my various doctors at UCSF, Stanford, Santa Cruz, Huntsman Cancer Center to collaborate and map out the potential options over the next week. If we determine that we want to change, there is typically some waiting period to let the current chemo out of your body before you can begin a new trial or treatment regime. Many of you have heard about Immunotherapy Treatment Options which is probably the most common path for my next line of treatment. I have been learning about these over the last year, so I am pretty educated on at least some of the options. As I reflect on the situation it is quite fascinating to see how in 6 weeks the drugs that I am on can basically do dramatic things to make me feel better and to reduce the tumor… and then 6 weeks later the same drugs have been unable to stop it from spreading and it grows back. They refer to this as “resistance” and it is just amazing how resistant this crazy thing called cancer is. Professionals have just have not been able in some/many cases to figure out how to tame it for the long haul. This is why these doctors and health professionals are so amazing…they desperately are trying to figure out how to beat the disease! Can you imagine always losing to Michael Phelps at the Olympics and just trying to figure out some way to win a medal after all the hard work you put in!? That is what these doctors and nurses and researchers must feel like…and God bless them for their continued efforts to keep trying. The great news is that we are succeeding in many situations and these brilliant people around the world are finding cures and saving peoples lives every day! The key is to stay positive and enjoy the process, learn from it, be aggressive with treatment options, and appreciate every day for what you can learn and accomplish while in this life. As we all know life is a probationary period, and we are responsible for our own happiness while we have the opportunity to live in this beautiful world. Random Reflection: This is totally not related to cancer or my situation, but because of my situation I have been able to observe something and thru my observation it created an insight that I think is worth sharing. For those of you who know our family, you can attest that our house is a wonderful rotating door of people, friends, family, neighbors, unknowns, and great times. I believe that the energy and spirit that exists attracts and invites people to feel loved and welcomed regardless of how well we know them and that it enriches our lives and is a great blessing to us. Many friends over the years have come to visit and stay and have gotten to know other people in the community such that they have created their own friendships with people that are our friends. When these friends of ours think about Santa Cruz they always say amazing things about our community and that they love coming to visit, that everyone is so friendly, that the surf is amazing, the biking is breathtaking, the food is raw and pure, the diversity is beautiful, the ocean and trees are a unique blend they have not experienced, etc. The insight is that, if these people came and just visited with my family, they would probably score the visit at about an 8/10…which is a pretty good score, but because of the “other” people that they meet (unplanned and not expected), most of them I think would bump their trip to a 10/10. As I have watched this happen numerous times and heard people in many ways give the credit to my family for entertaining them, showing them a good time, etc... the real difference maker has been the “other” people that spontaneously came into the mix and created a deeper and more enriching experience for our visitors. They reached out to them not because they were “our” friends, but because they independently wanted their own relationship and by so doing it made our visitors feel important, loved, welcomed, and valued. If I was to name or label this…I would describe it as: we were the Primary host and other people were Secondary hosts. How grateful I am for those people who have played this role for my friends and fundamentally changed their experience. It is said that it is better to have 100 people that love you, than 1000 people that like you. In my experience, clearly one of the things that pushes people into the “love” category are those that play these secondary positions. So the key is to play whatever role you find yourself in, the spirit will guide you and prompt you to influence and make a difference. It should not matter where you sit, but what matters is that when prompted to play a role or to reach out to someone that you do it. I am very thankful for the many people who have played both Primary and Secondary roles as I have been able to travel and visit our amazing earth. These people have deeply influenced my experience. Have a great day! Greg aka part of Team Maddog!! Health Update:
As many of you know I have been on a new trial through the breast cancer team at UCSF over the last six weeks. The phase I trial has been targeted at attacking my HER2 mutation with three drugs and with one general chemotherapy to kill everything else in case the targeted ones do not work. I get three of them infused via IV once a week and one chemo I take in pill form every day. I have previously mentioned my CEA Protein Marker scores which is one data point in terms of how my tumor is doing. Over the last few weeks my CEA marker has gotten quite high, and it made me and the doctors curious about what my scan was going to look like on 6.28.16. The CEA is currently at 336 after hitting a high of 475 two weeks ago. The scan results came back very positive, meaning that my cancer (tumor) is decreasing in size--or in my case the “poorly differentiated” cloudy mess in my lungs has thinned out and appears to be on a significant decline. This is amazing news and something we are all very happy and excited about. Basically this means the targeted drugs are working and we are making great progress in the first six weeks. It does not explain why the CEA marker is so high but the scan is more important than the CEA marker…so we will take the results we have gotten! I will stay on the current treatment plan for at least another six weeks and then we will take another CT Scan and further assess. I have been feeling better in terms of my lungs and breathing, and the results obviously back up how I am feeling. The challenging part of this trial are the side effects of these various chemo’s. As I had previously mentioned, the biggest side effect is diarrhea and the inability to manage it. When you are putting these drugs into your body they have numerous effects and unfortunately this is one of them. This particular cocktail does not let food and your normal digestion process operate as it was built. I am trying to figure this out with pills, more pills, eating, drinking, and positive thinking. There is one other person on this trial so far and he is two months ahead of me and he has faced the same challenges and is still searching for some answers. They told me he is using a tincture of Opium to help control it along with many other things. I am not ready to go there, but we shall see how things evolve. So for now, I am getting more aggressive with the pills (I really don’t like taking pills so this is a tough one for me)…I just want my body to fix itself…which has always been my situation…but I am learning with these drugs you have to fight the fight with weapons that match up to the enemy! One funny story, if you keep this formula in mind: time + tragedy = humor. When this first started a few weeks back I was having some challenges, so I went to take one of the pills that will block up your system (Imodium). I was surprised several hours later when the situation was even worse. When I went back and looked at the pills, I had mistakenly taken the pill for constipation…so I just added fuel to the fire without even knowing it! I will spare you all the details but I did find the situation fraught with humor and enjoyed getting some good laughter out of it! During my latest scan, in addition to the great news, they found some cancer in my back. The official term is L2 vertebral body sclerotic lesion. Basically on my L2 vertebrae. Yesterday I received a shot to strengthen my bones. I guess this is typical with cancer…some of the cancer gets in the blood stream and then gets carried around the body to various spots. I am told the bone strengthener should help mitigate any risks and I will be doing some more research on this topic in the coming weeks. Reflections: As I have mentioned this cancer journey is like whack a mole! You make progress in one area and then boom…a new surprise is around the corner. Staying flexible is key, and knowing that life will bring you new and interesting surprises every day is part of what makes life exciting and not boring. I am guessing that for most of you, there is very little left that could surprise you. The human condition is such that we/you just can’t predict who would be a good political leader, what a great neighbor will do, what your brothers or sisters in another country might do to you, or how the financial markets will react in any given situation. I have always said that consistency is one of the greatest qualities - the ability to have faith in something/someone in terms of the results that they will produce based upon past experience. As part of this clinical trial I am quickly learning that in the trial phase of things consistency is something they are trying to figure out - how to treat the disease and provide an experience for the patient that is consistently manageable and thus could be taken to a broader audience. So the experiment will continue and hopefully we will learn how to make the result and process both work together for a great outcome. As I continue on the path forward, the mind is something I continue to wonder about. What is the power of the mind and how much do we control in terms of experiencing joy and pain? There are many stories of people overcoming great pain because they believed in the outcome of what they were doing such that it allowed them to carry on against all odds. When faced with physical challenges, the mind can carry us forward in such a way that the challenges are minimal and easier to deal with. This whole topic of the “why within” that I wrote about a few weeks back again pops into my mind as I play out the future. I have been amazed with people that always were able to make it on a vacation and yet had trouble at times getting to work. Were they sick at those times or did they convince themselves they were sick? Did they will themselves to not be sick knowing they had a vacation or an adventure ahead of them? The trick for me is to believe and act like I am getting cured but not over do it such that I don’t allow my body to heal. That is a fine line and I am trying to figure out how to walk that tight rope. I can feel my interest in being more productive, in getting my mind wrapped into engaging projects, and in being able to serve other folks to the extent I am capable. Another tricky element is acknowledging and being honest about what you can and cannot do even though in your mind you can’t imagine not doing something you have always done. I hope you are all enjoying summer and spending quality time with your loved ones! I so appreciate all the love and support from all of you and am humbled reading your comments and just knowing that you think about me and send me positive feelings and thoughts. Make it a great day! Greg Below is a nice poem in which Longfellow compares the arrow to life, and the songs are compared to feelings. Even though songs (feelings) are unseen, they are still real. The Arrow and the Song By Henry Wadsworth Longfellow I shot an arrow into the air, It fell to earth, I knew not where; For, so swiftly it flew, the sight Could not follow it in its flight. I breathed a song into the air, It fell to earth, I knew not where; For who has sight so keen and strong, That it can follow the flight of song? Long, long afterward, in an oak I found the arrow, still unbroke; And the song, from beginning to end, I found again in the heart of a friend. Since my last update there has been lots of movement. When I visited with the doctor on the 18th of April after my results came back from my tests, it was clear that we needed to explore the next level of treatment options.
The tests revealed that my cancer had started to grow back and my CEA score (protein marker) had risen over the last few weeks to 260, which is just south of where it was when I began treatment in September 2015. The CT scan also showed that my tumor had increased in size and become more “cloudy.” My coughing and ability to breathe has gotten a little more difficult and generally my body is working harder. After the conversation with the doctor, the next question was, “what do we do next?” We had a family trip planned with all the kids leaving in a few days and one of the questions was whether we should leave town or not? After meeting with our UCSF and Stanford doctors, and talking with my doctor at Huntsman Cancer Center, we collectively decided that we should go on our trip and that the doctors would collaborate, research, and figure out the recommended path forward. They all said, “go on your trip, we will do the work to figure out what is the best path forward and we can talk via email or phone to make the recommendation.” I think you can see how awesome my doctors are, they have set a new standard of customer service. I think the unique factor is that they are passionate about the problem and are obsessed with trying to beat cancer in combination with being outstanding people. My Huntsman doctor is on sabbatical for 6 months and has given me his cell phone and continues to do all sorts of research for me. Amazing. They also pointed out that for me to begin a new clinical trial I would have to wait at least 21 days to let the current dose of Chemotherapy get out of my system before I could begin a new study, so it made no sense to stay in town. I quickly agreed, and off we went on a family trip. This was a trip that is probably the last with just our own kids as my oldest daughter is getting married in August 2016 and my oldest son is leaving (June 1st) for 2 years to go on a mission for our church to Nova Scotia. So needless to say, this was a significant trip for our family in many ways. Many of you will understand this unique moment when you can see that your children are branching into many new arenas and your family is expanding in many wonderful and amazing ways, and at the same time this marks a moment of change that is reason for a little pause. For younger parents, this is almost impossible to imagine happening and for the more seasoned crowd, you have long passed on this moment and can’t imagine life any different with all the new wonderful and amazing family members! So to me, this was special family time and I was stoked to be able to be with my family. While away I emailed on a daily basis with the doctors, my tissue samples went through more testing, the doctors surveyed the world to find a trial that they thought I could get accepted into. You will recall that my situation is such that I have a HER2 mutation and so when figuring out the next line of treatment, this is a major consideration along with Immunotherapy options. HER2 is typically found in breast cancer patients and is only found in 1-2% of lung cancer patients, so it is quite rare and there are not very many trials or approved drugs at the moment that I qualify for or that insurance companies are willing to pay for. For about a week, the plan was to go to USC to work with an outstanding doctor there who said she would accept me into her trial. I was asked if I had a support system in Southern Cal and I quickly brainstormed a big list of people that I knew would be willing to help in any way so it was easy to say yes. Lots of love to all my SoCal peeps! The downside of the USC trial was that it only allowed me to get 1 drug that is targeted towards my HER2 mutation, so they kept looking. About a week later, they found a trial at UCSF in the breast cancer department that is testing 4 different drugs that seems pretty on target for my situation. They spoke with the doctor and she said she would allow me in the trial even though I was a lung cancer patient. Today (5.18.16) I had a CT Scan that is the last hurdle I have to get over to get into the trial, so I am about 95% sure I am in. If all goes well, I will begin the new trial on May 24th. https://clinicaltrials.gov/ct2/show/NCT02593708 Just to give you a quick overview of the trial for the more technical folks – This is a phase 1 clinical trial assessing the safety of Neratinib in combination with Paclitaxel, Trastuzumab and Pertuzumab in women and men with advanced or metastatic HER2+ solid tumors. Throughout the course of treatment, Neratinib will be taken daily (oral pill), Paclitaxel and Trastuzumab will be a weekly infusion, and Pertuzumab will be a tri-weekly infusion. So the news is exciting and I am pumped up about the possible results of attacking my mutation in hopes of getting at the root of where my cancer started. So I am taking this as a major blessing in my life that my cancer grew back at just the right time that this new trial is opening up (they only have two patients at the moment on the trial) and that I am able to get into it. It will be interesting to see how my body responds. This again will be another experiment and as long as we can stop the cancer from growing and shrink it, I will stay on the trial. The initial run is for 12 weeks and we will observe along the way and adjust as necessary. Living an “emergent” life is becoming quite exciting! One of the interesting questions for me (as I have previously discussed) is finding out about possible side effects of the new trial. Do I want to know the possible side effects or just let it unfold? I worry that my mind is such a force that I could will the side effects to occur or not as opposed to just letting happen whatever is supposed to happen, and appreciate them as they appear. At the moment, I have not fully read the packet of “disclaimers and potential side effects” like I have in the past. The positive aspect is being aware such that when something occurs you are not surprised; the downside for me is that I start wondering if the side effect is going to impact me. Given that the combo of these drugs have never been given before it is hard to totally guestimate the side effects. The nurse did tell me about the very strong possibility of losing my hair, diarrhea, numbness in the fingers and toes, and a few others. When the nurse was telling me the potential side effects she said, “you might have level III bowel movements.” I was sitting there asking myself, “am I supposed to know what level III bowel movements means?” One of those awkward moments where you ask yourself should I probe on that or look it up later? I could not help myself so I asked, “what does level III mean?” She responded, “more than 7 trips to the toilet.” (porcelain Honda as we used to call it for some reason as a kid) I then probed further what is level II? She said, “5-6 rides on the Honda, and level I is up to 4.” So I hope this data gives you some content to use for all those cocktail party conversations that are flat out boring - “What do you do for work? or for the college kid, “What is your major?” Reflections: I would not be telling the truth if I did not say I wish my current treatment would have held my cancer under control for a longer period of time, but clearly that is not the case. Sometimes I think about this like it is a game or sport and I am competing with cancer. Then I stop and think, I can’t view this as a win or loss, it just is and that is perfectly ok. I can only control what I can control and as long as I am doing everything possible that is all I can do. The key is how I respond to the present and rally around my next moves and be open to the discovery process. We officially ended the last trial on Monday the 9th of May and I had my exit tests. We saw Johnathan who was my clinical trial director. You will remember some of my earlier posts about how challenging he was to work with. As we ended, he came to say goodbye and it was a tender moment. Jan had made him a bracelet 3 months ago and he wears it every day. We grew to love him and he grew to love us even though things were rocky all along the way with him in various ways. I think we appreciated him in spite of his weaknesses and knew that he was doing the best he could do with the skills he had been taught. We have gained a friend that we will have forever. This is a clear W for us and that was within our control! Words cannot describe how appreciative I am for all the support, prayers, love, thoughts, and positive energy I know that you are all sending me and my family. It is truly humbling and I am deeply touched. I only hope that in some small way I can return the love and friendship to my fellow human beings. Have a great day and appreciate every moment you get to live and breathe. Live Aloha, Maddog |
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