Good morning and Happy Tuesday to everyone! I apologize for the delay in this blog. Out of all the blogs I have done, this is probably the most important for me to convey the emotion and passion gained from this weekend through my words. I have done a lot of reflecting these last few days for the best way to present it. With all that transpired at the retreat in just 48 hours, it is very difficult. I hope through my description you get some sense of the deep impact this had on all of our lives. We had an amazing and perfect weekend. We hope and pray your weekend was as refreshing, eye opening, and emotionally charged as ours. We hope you learned about life as we did, shared your life with emotion and passion, and lived your life to the fullest extent possible because time is precious. Our weekend was filled with experiences, memories, and moments of emotion that can only be explained by God. In order to attempt to explain this weekend, I must detail the path on how Andrea and I came to learn of Bluebird because it is nothing short of a miracle and divine intervention.
The day Bluebird Cancer Retreats and our lives crossed paths was on our 5 year wedding anniversary, July 27. Unbeknownst to us at the time, we were receiving one of the greatest anniversary gifts of our lives. My wonderful and amazing coworkers at the Grand Rapids airport were running a bake sale benefit for our family for the entire day. Fate would have it an incredible person named Renee was traveling out of the country that day to watch a family member compete in the Olympics, and she happened to be the executive director of Bluebird Cancer Retreats. Andrea, Landon, Logan, and I had not arrived at the airport yet, but Renee stopped at the benefit, read our story, and gave my friends her information. I contacted her immediately, and Bluebird Cancer Retreats was now on our radar. If it were not for her flying out that day, we would never have found out about Bluebird.
The retreat was not for a couple of months, but we had every intention of attending. However, I knew a lot could change in that time frame. We did not know if we would be able to leave Logan, especially if Andrea was unable to get enough milk stored because of Logan’s lack of sleep. We did not know what my condition would be. We did not know where I would be or what treatment I would be undergoing. The retreat was a ways away, and I just kept in contact with Renee and updated her often.
As if the very chance encounter of Renee flying out the same day as our benefit wasn’t enough of a miracle, the two weeks before the retreat a few obstacles to our attending the retreat presented themselves. First, Logan was not sleeping through the night, and Andrea could not get her supply up enough to feed Logan for an entire weekend. She felt very discouraged and upset at the notion of feeding Logan formula. With Landon, he was sleeping 13 hours through the night at this age. Andrea’s supply was abundant. This was not the case with Logan, and we were worried formula would cause unwanted issues for a baby who already has sleeping issues. We did not want to place that burden on a family member for the weekend. Fortunately, Andrea called the nurse line for our pediatrician and spoke with a very helpful and informative nurse who went through everything with Andrea. She explained the best formula to use, issues to possibly expect, and, most importantly, to not worry. Andrea was relieved. In addition to being able to relax about formula, a coworker of Andrea’s offered to travel to Holland and pick up whatever milk Andrea was able to store by Saturday night and bring it to Logan. What a blessing! Andrea was very relieved and able to relax now. We were one step closer to attending the treat.
Next, as most of you know, my symptoms with this regimen are just awful. We are trying to get a grasp on them with each new round. For this round, I was in a lot of pain and had not slept more than 4 hours a night in the previous two weeks. I could not concentrate. I could not carry on any sort of meaningful conversation. How was I suppose to put my heart and soul into a weekend to fully appreciate and learn from it? How was I suppose to enjoy the alone time with my beautiful wife? I was, quite honestly, no fun to be be around because of the condition I was in. However, miraculously, my symptoms drastically improved two days prior to the retreat. I was able to get a good night sleep the night before our departure. We were meant to attend. God was taking care of us. Looking back, I can see why.
I’ll start out by saying what was discussed last at the retreat. We were discussing the methodology of explaining to a newcomer the impact of the retreat or somebody considering attending. It’s impossible. There is no brochure, no word of mouth, no expression, and certainly no description that could possibly entail and encompass what this retreat and support group does for an individual with cancer and their caregiver. It is a dynamic weekend filled with emotion, passion, laughter, friendship and bonding. Words cannot replicate the true experience. It is unique to each retreat. The impact for each individual is different. What one couple takes away is completely different than any of the others. How in the world could you possibly describe to a newcomer the deep meaning, the emotions, and the passion shared by so many people and the way it touches your very heart and soul? You cannot possibly. All you can do is tell your reflection and personal view of the weekend and hope it’s enough to convince someone how much it is needed in their life. We all go in with different mindsets. Some don’t think they truly need the experience, others know full well how important a weekend shared with individuals enduring the same life-altering diagnosis that cancer presents can change their life and give new meaning to hope. We were the first type of couple.
I will be completely honest. I did not think we needed such a weekend, but I love to meet new people. I wanted to attend for reasons other than what I came out of the weekend knowing. I love to learn from individuals, but as far as what support groups are said to do for couples, I didn’t think we needed it. We are a strong, faithful, God fearing couple. We communicate very well and love each other more than each other’s own lives. I will be the first to admit I was wrong. We were wrong. I did not know how important it was to share your life story with those in the same passion-filled, but unfortunate, group we were all thrusted into. Aside from that, it is the unplanned experiences that are the ones difficult to describe and portray the meaning. I will discuss them in a bit, but I can remember 3 distinct moments that touched my heart, revived my soul, and allowed me to remember some of my life before my cancer diagnosis. Unless you experience this awful disease first hand (I hope and pray you will never), you will never know what this does for a cancer patient. Your life forever changes post diagnosis, no matter if it’s Stage I or Stage IV. No matter if is a surgery only treatment, or all three (chemo, radiation, and surgery). Your life stops, but if you can get a glimpse of life, even for a moment, of before that dreadful day, it is cleansing, refreshing, and cathartic.
The retreat staff was incredible. They lived up to everything they promised and more. You go in expecting your run of the mill volunteers only to be floored by their personal stories and why they are there. You learn, very quickly, why they are present and how much caring and pampering us are deeply rooted within their souls. Honestly, I do not like to use the word staff. They are more than that. They should not be grouped with your normal hotel staff, concierge service, valet, coordinators or even counselor. They were our caregivers for the weekend. They have all been in our situation in every known roll of this journey. They know the impact of this weekend even though we did not at first glance. They allowed our caregivers to forget their roll for the weekend, relax, and just enjoy life with everyone. The weekend would not have been what it was without their dedication, support, honesty, love, respect, and care for both the survivor/thriver and caregiver. Saying thank you does no justice. However, thank you from the bottom of our hearts.
The weekend was very structured. It had to be. They had a schedule that was very well thought out. We started out Friday with a meet and greet. We had dinner together, and the evening was probably the most emotionally charged part of the weekend. We confronted our stories. We shared our lives, our fears, our goals, and passion for living. We gave each other hope. We tearfully expressed our most intimate details about our journey. The stories, although incredible and moving on their own, are by themselves ones heard before. On paper, they were stories of tests, diagnosis, and statistics. However, the inspiring, touching, and remarkable aspect was the emotion, strength, love, and faith expressed and instilled through the stories. We are fighters. We are survivors and caregivers. We are love, respect, and dedication. The love for each other was so evident it could be felt and gave you chills. The sum of any support group is much greater than the individual parts. We could move mountains as a team. We have no choice but to give it our all. It is not a game. It is our very being and existence at stake, and we are a team of people who are faced with the ultimate task of beating the odds no matter how depressing and daunting. We will prevail. This session is the one that shocks you, opens your heart, and allows you to enjoy the rest of the weekend. Your story is out there, but the after effects are so much different than expressing our journey to a person untouched by this disease (touched first hand – it effects all of you, I know). The sharing part is difficult, but there is no pity. There is no “I’m so sorry” phrase following the story. Most importantly, there is no change of perspective on each other because we are all in this together. We were able to enjoy each others company for the remainder of the weekend without an elephant in the room. It was amazing.
The planned events and sessions were extremely meaningful. We discussed fears, definitions of words, goals, offered office, and gave suggestions. We learned a tremendous amount from the intended activities. However, as important as the planned events were, the unplanned moments are the ones that shaped our experience and made the weekend so very unique. They were situations nobody could foresee. It was life at its finest expression of love, knowledge, and unpredictability. The range of moments was extensive; the laughter at dinner; the one on one with other couples; sharing our passions in life and what makes us smile; sharing our motivations and joys; and inviting each other in as family. For me, it was my passions in life, besides my family, that were rekindled.
The most amazing story I can tell is one of sharing knowledge and helping another despite what I am going through. For those who have known me my whole life or at least some time, I love to help others. I love to give myself in any capacity to make another’s life a little brighter and to instill hope. What happened at the retreat is nothing short of a miracle. My cancer is very rare. Yearly, there are about 80-100 new cases nationwide. At the time of our registration, I was the only one attending with angiosarcoma. God intervened. The retreat was full and no room for additions. Miraculously, a couple canceled a week prior for unknown reasons. Due to the closeness to the retreat, they went through a stand-by list of couples looking for a voice and not an answering machine. Four couples were called before fate locked in the fifth couple on the list. They answered and she too was diagnosed with angiosarcoma around the same time of my recurrence discovery. Her doctor, whom is not a specialist, had stripped her hope and told her they were out of options after just a few rounds of a single regimen. This was devastating to hear knowing all of the research my family and I have done. You better believe I kicked in to help overdrive. My first goal was to restore hope. Hope is critical. After that, I explained everything we have learned. I emailed all of my sources that evening, and received immediate responses. It is important for all of you to know how critical it is to move fast with this disease. Every one of my contacts knows this fact and will not waste time. We now have the ball rolling to get her the correct help and treatments. She will have the very helpful books I read later today. They are an amazing couple, and I am so glad they are part of the family you and I have grown. It gave me a sense of purpose, besides my family, in life again. It has sparked a fire to do all I can to help not only my new friend, but to help those researching and studying angiosarcomas. It is an amazing feeling.
The next unplanned moment happened during one of the planned activities. The activity involved couple’s teamwork to build a bluebird birdhouse. Andrea and I love to work together and tackle projects. We work very well together. She designs and picks the colors, and I instill my type A, OCD personality in to every detail of completing her vision. While painting each side, we had to leave time to let it dry before putting the details on. To fill this time, there was a boy named Nolan. He was the son and grandson of two of our weekend caregivers helping with everything birdhouse construction. He was an incredibly polite and respectful young man. To my delight, he too had a passion for soccer. His passion was just beginning, and, lucky for me, he brought his soccer ball. Unbeknownst to the staff, I played soccer my whole life. It is one of the most passionate things in my life. Furthermore, I have been unable to exercise for the past 3 weeks due to my side effects. It felt so good to feel my heart rate increase, to feel my breathing rate increase, and to kick the ball around with this young man. It was therapeutic on so many levels for me. It was very refreshing.
As far as unplanned moments go, this next one took me by surprise, and the sequence of events just fell in to place without any effort. With the retreat being on Lake Michigan, Andrea and I did not hesitate to take a walk down the beach, hand in hand, while the sun was setting over the lake. It is one of our most favorite things to do as a couple. Along our walk, we noticed a kite boarder trying to launch from the beach. As we approached, he waived us to come through. We waived back to him with the notion we would stay where we were to watch. He was able to get the correct airflow over the leading edge to get some elevation, but the wind changed. After about 10 minutes of attempts, he brought the kite to the beach and waived us through again. He seemed to be calling it a day with attempts, so we decided to walk through. As we passed, I said hello and nonchalantly mentioned he had the correct airflow but the wind just changed. The friendly gentleman kindly walked over to us and engaged in conversation for about 20 minutes, mostly with me. Through conversation, I learned he is a pilot and owns his own airplane. I have not discussed aviation like this in so long. We discussed the equipment in his airplane, how it flies, the airplanes I flew and their equipment, our favorite things about flying, and everything else you could thing of. He didn’t know my situation. We just spoke as both our lives were enjoyable and filled with passion, as they both, quite apparently, are. He than asked me, as he stated, being a fellow airfoil man, if I would not mind launching his kite. Mind you these kites are very sophisticated, about 15 feet long, and behave just like an airplane wing. I was thrilled and honored. He gave me some tips on kite board launching. The launch was flawless and amazing to do and witness. Thank you Tom for giving us this memory. Thank you for your compassionate for life and strangers. Thank you for embracing my wife and me on our walk. You will probably never read this, but you filled my heart with joy that day. You cannot plan these moments. These memories are what makes explaining someone contemplating attending a retreat, support group, or the like so difficult. It is the combination of everything that makes the experience what it is.
The weekend was filled with so much hope and strength. We all learned that although our individual stories are unique and inspiring, our feelings are not. We are all part of a group we never envisioned joining. We are part of it now nonetheless. However, every single one of us embraces it with hope and courage. We look this journey in the eye and confront it with the notion, willpower and strength to beat this dreadful disease. The entire weekend we built on each other’s strengths to fill our own individual weaknesses. It was a weekend we all needed for different reasons. Our circle reflections at the end revealed many revelations about what we learned and how it has changed our lives. The weekend caregivers said you will enter this retreat one person and leave as someone different. They were absolutely correct. We arrived as strangers and left as family. We started out as individual pieces of something much greater and departed as a masterful work of art that is inseparable, inspired, and stronger than before.
If you get anything out of this lengthy blog (and I apologize for the wordiness), I hope it is the power of friendship and sharing your story with people in your circle. This concept does not just apply to cancer. It applies to anything in life. If you are having issues with a job, find a group with the same problems. If you are having relationship bumps or problems with children, seek out a circle of people in which they can relate and give significant advice. If you have any disease, it is paramount you seek out others with the same bump in the road. I have heard from most, if not all of you, how you have no idea what we are going there. Once again, that phrase is both a blessing for my heart and for your life. Walk with us, but don’t ever experience it first hand. Learn from us and take what you will, but live your lives not knowing the life-changing nature of such a diagnosis. With a retreat like this, they know what we are going through. You can lean on one another, cry with one another, and everyone knows the feeling. You can all relate. Please do not hesitate, as we did initially, to attend such a group. It will transform your life in the most positive ways possible despite such a daunting and bumpy road ahead.
Thank you for your continued love and support. I hope I was able to convey what I needed to. I hope the significance of this weekend to us is now known, can be spread to those unaware or unwilling, and helps people in all walks of life. We all need each other no matter the circumstance. No issue is too small to cry out for help. We need each and every one of you with us. You each bring a unique way of helping us on this journey. Thank you for walking with us and lifting us up. We love you all. Make it a great everyone!