Cancer and Hope: Perfect Together

Here are the three simple words that will alter your life in dramatic and innumerable ways: you have cancer. Everything comes to a screeching halt. You have heard what you have just been told by the doctor, but you don’t quite process the meaning of these scary words. You are in shock, denial, and then gradually, eventually, the reality slowly starts to sink in: I have cancer…..How can that be? Why me? What’s going to happen? Your physician explains what the next steps will be, a “game plan” so to speak, then hands you a copy of your biopsy report that reiterates your cancer diagnosis in stark, medical terms. Your brain is trying to understand what has just happened and what will take place going forward. You ask yourself: how am I going to get through this?

Overwhelming, frightening, and helpless are three adjectives that accurately describe this awful experience for most newly diagnosed cancer patients. You may have even thought that cancer happens to other people, it won’t happen to me, but here you are in your new reality. It’s totally unfair, which is certainly true, but somehow you will need to face your diagnosis, head on, with grace and lots of courage. It definitely won’t be easy, and yes, certain days may be downright miserable, but you know you will get through those moments too with numerous supports. You are already a survivor as a special needs parent. You have been through many great travails with your disabled son or daughter and have remarkably come out on the other side in one piece. That same fortitude and grit will also serve you well following a cancer diagnosis.

When I was diagnosed with colon cancer almost 13 years ago, I, too, felt the aforementioned and was completely gutted initially. So many unanswered questions and fears about today and tomorrow. My brain went to those dark, hopeless places during those early days, to the point where I quickly began to lose hope and was already putting myself in an early grave. In retrospect, we had other major challenges going on at home, so the cancer diagnosis was just the final straw that broke my spirit which was already struggling under the weight of Brian’s disabilities and my husband’s unemployment at the time. It was all a dark nightmare that I thought we would never have to relive again until the end of this past April when my husband , Jim, was notified by his gastroenterologist that he had colon cancer after a routine colonoscopy. All of a sudden, I experienced post -traumatic stress disorder (PTSD) from 2009 in a flash. Those feelings of intense fear, helpless, and darkness from 13 years ago immediately came back and were just as real and intense. The difference this time, though, was that my husband was diagnosed- with the same cancer! What are the odds of that happening? It was bizzare, surreal, and frightening all at the same time.

I had to purposely dig deep for hope and believe that Jim was going to be OK. There are certainly no guarantees with cancer- for anyone- which makes this awful disease all the more frightening. But, treatments have come a long way, along with early detection and pain management. As a colon cancer survivor myself, I know these things to be absolutely true. So, I had to make a conscious, daily decision to focus my attention on these facts and to place my trust in God that somehow He would “work all things together for good”. God’s track record in my own life has always been one of faithfulness, regardless of the situation. This doesn’t mean that things in life have been fair or easy, for many times they are not. but I know I will receive the grace and courage that I need to get through whatever the challenge is because it has happened before, and will ultimately happen again, when I choose to trust the One who makes all things possible. Now, more than ever, I needed to hand over all of my fears and concerns and trust that God would work out all of the details of Jim’s cancer journey. I wanted to be hopeful and believe we would really be OK.

Fortunately, Brian’s many needs kept me distracted during this time, so I couldn’t constantly think about the “what ifs “ of Jim’s cancer situation. I was always aware of these things, however, and would often say a quick prayer to be strong and to try not to think too much ahead. I also tried to continue self care when I could; taking long walks especially helped me to clear my head and live in the literal moment, as I would observe the nature around me. I also went away on a special needs Moms retreat weekend in Maryland last month. The timing was perfect, I met some lovely Moms, and the rest was so needed. I felt rejuvenated and more ready to face what was inevitably ahead. Throughout this cancer journey, extended family and friends were also praying for Jim, which meant so much to us and provided us with the strength and courage to move forward. We were so very aware of the looming June 7th surgery, dreading what it would entail, yet trying to remain positive at the same time. It was mentally and physically exhausting.

The weekend before Jim’s surgery was the most difficult. I had ran out of words of encouragement for my husband: all that was left were reassuring hugs and hand squeezes in those pregnant pauses of conversation or in silence. Jim was lost in deep thought and isolated himself for periods of time in his home office. I completely understood why, for I had done the very same 13 years earlier. You know the inevitable is just around the corner and will need to be faced, alone, no matter how many hugs, prayers, and words of encouragement are received. Our beloved niece, Miriam, arrived a few days before the surgery. Her presence was a balm, a blessing, and a huge help, as Brian’s daily routines still had to go on. Luckily, Jim’s surgery was the first case for his surgeon, so were glad to get to the hospital at 5am that Tuesday morning, since sleep had eluded us anyway.

I was able to remain with Jim in the surgical center at the hospital up until they were ready to bring him into the Operating Room. Nurses and doctors kept coming on and out of his room and were good distractions with their many questions, medications, and directives. The IVs were put in and the hospital gown was put on. It was Jim’s second time as a patient- the first time was his birth. He looked so vulnerable in the hospital bed and I commanded myself not to cry. Finally, it was “show time” and after giving Jim a final hug, prayer, and a kiss, I was whisked away by one of the nurses. She directed me to the surgical waiting area for families, where I would remain for almost 11 hours ( it took that long to make the transition from the recovery area to a patient room on the floor). It was going to be a long day.

It was during this agonizing wait that I felt the prayers of so many the most. Extended family and friends sent their prayers and love to Jim and I constantly during those long hours. We received so many texts and phone messages of encouragement, along with social media support. The love and hope was so overwhelming and soothing. Two friends also sat with me for a while during the surgery and recovery. God knew what both Jim and I were going to need well before we did and He graciously provided. The surgeon’s report post surgery especially was music to my ears: everything went well/ as expected and he was cautiously optimistic that surgery would be curative. The pathology report would come back within 10 (long) days. More hope and prayers…

In the meantime, Jim’s surgical recovery from colon cancer was truly nothing short of a miracle. I was flabbergasted to see him sitting up in bed just hours after surgery. He was able to walk the floor for over 10 minutes the very next day- unbelievable! While both of us had laparoscopic surgery for our respective colon cancers, there have been major improvements in the pain management post surgery over the past decade. Jim requIred only Tylenol for his pain after the first day and discontinued it’s use by the third day. He was discharged in 3 days versus my 8 days in the hospital. I couldn’t believe it! The nursing care that Jim received in the hospital was truly outstanding as well. All things considered, Jim had the best case scenario for a cancer surgery.

Home is where the best healing takes place, so Jim was able to sleep a lot last week once he was back in his own bed, as it’s virtually impossible to do so in the hospital. He slowly started to introduce more solid foods into his low residue diet with each passing day without incident . One miracle after another kept happening- his recovery was so amazing to behold! I was so proud of Jim’s strength, positive attitude, and faith during this challenging time. I believe that it was his “ attitude of gratitude” that inevitably resulted in his successful recovery, along with the prayers of so many!

Finally, the long-awaited pathology report arrived- 9 days after surgery. This is quite common, as the pathologist must be 💯 accurate with a diagnosis, but it was nerve-wracking nevertheless.. Fortunately, we were so distracted by Jim’s awesome recovery, that we didn’t think about the pathology exclusively. When Jim’s surgeon told him the wonderful news a few days ago that his surgery was curative for colon cancer, my heart literally skipped a beat! The elation that followed was indescribable…the release of tears and stress were so incredibly cathartic. We were beyond grateful and know just how blessed we truly were and still do…Jim and I are the lucky ones. We know this happy ending is not everyones story. Cancer has tested us, humbled us, and has also literally brought us to our knees in fear. It has also warned us to make sure we have our priorities straight. Cancer has also shown us just how powerful of a weapon prayers are against it! Cancer is no match for the compassion and love of others who support you in your time of trouble- we experienced this first hand too!

I pray that a cure for cancer will be found in our lifetime. New treatments are constantly being added to eradicate this menace, so there are many reasons to remain hopeful… In the meantime, preventive medicine is vital and provides the best possible outcome for a “cured” status, so please, don’t “skip the scope” if you are due! Baseline colonoscopies now begin at age 45 for colon cancer- it remains one of the most curable cancers when caught early.

Signing off with a very grateful heart- until next time, thanks for sharing this journey with us- it’s officially a wrap! 💙💙💙💙

The latest colon cancer survivor! 💙💙💪🏻💪🏻

Brian’s Hero (Mine Too!)

While I sometimes don’t recall specific details of recent events, I do remember the names of every single one of my teachers from first grade through high school. I admit, it’s amazing that I would still know this information over 40 years later, but there is a reason for it. From an early age, there were certain teachers who absolutely instilled within me a love for learning, especially for reading, writing, and later on, Algebra 1 and 2. Those individuals ultimately inspired me to become an educator myself, before having Brian, but after my stints in the airline and pharmaceutical industries.

I had always looked forward to going to school to learn new things and remembered not only what my best teachers taught, but how they made me feel. Of course, not every teacher was stellar and those individuals also stand out. In fact, there were some who clearly did not belong in the classroom at all and were tormented daily by bored students who would inevitably disrupt the class. Naturally, there was also everything in between. Most of us could certainly share the good, bad and ugly of our educational experiences during our time in school and how these things shaped our learning and views of the world for the better or worse. School was supposed to prepare us for the real world and provide us with skill sets that would be necessary for employment. I’ll always remember my Dad saying to make sure to select a major in college that would translate into a job after graduation. It was very practical advice and ultimately I studied special education. Little did I know way back then how very practical that decision would be later on when Brian was born…

Speaking of special education: it’s one thing to be a student of its curriculum, a student teacher, and then a special educator in the public schools for mild learning disabled students, (which I was for 5 years). It’s another thing entirely to have a severely disabled son who would ultimately require a private program for students on the autism spectrum. I am now in a foreign country and don’t speak the language. I never learned the terminology in college ( because it didn’t exist at the time). Instead of being a teacher of disabled students, I am now the mother of a special needs son. It was definitely above and beyond my ken and pay grade. The learning curve was quite steep, arduous, and relentless when it came to dealing with the school district(s). The process could be so frustrating and was meant to wear one down, with the hopes that you will give up on what your child needs. To that, I would eventually learn to say: Hell No! 😡

Sure, as a special educator I had attended many IEP meetings for my students, in fact, I had written a good portion of each IEP document, but nothing compares to actually having your own disabled child in special education. How strange it was to be sitting around of the table, listening to other professionals talk about your child, instead of the other way around. Those initial IEP meetings were difficult, heart wrenching, and often overwhelming. I realized that I had so much to learn as far as advocating for my son was concerned and the resistance from the “powers at be” was real. It would take time to figure many things out, coupled with copious doses of patience and fortitude… Is it any wonder why special needs parents often get defensive, especially when advocating for things that shouldn’t be so hard to get and that their children need and are entitled to? Argghhh!

The success or failure of IEP meetings and the educational experience in general, rested heavily on the teacher’s shoulders to advocate for their students . I recall that being true for myself and this was certainly the case for Brian’s teachers as well. Just like us, our kids have also had excellent teachers, educators who were horrible, and those in between. I can definitely count on my one hand those excellent teachers who have truly stood out in Brian’s educational experiences. They are his heroes and mine as well. I have an understanding of what it must take to teach our special kids, each one with their multiple needs, and am awe of how those wonderful teachers and their staff persevere. I know I couldn’t do what they do daily in their classrooms to ensure that our kids learn.

Conversely, there have certainly been a few awful teachers who gave up on Brian, which is the worst.. One teacher in particular was only in touch with me whenever there was a problem, despite my attempts to support her efforts so that she could help Brian learn . Finally, one day as she was relating another negative incident regarding Brian’s behavior, I interrupted her in exasperation demanding to know ONE good thing that Brian did that day at school: she really couldn’t think of one. She wasn’t getting him and even worse, she ultimately didn’t care to- it broke my heart. No wonder Brian wasn’t so thrilled to go to school that year- he also could sense that this teacher didn’t want to help him, even though he couldn’t tell me. It took Brian a while to regain his enthusiasm and desire for school and learning after that experience.

Unfortunately, many of our special children have had similar experiences, which have the potential to taint our perception of special educators in a negative way. I had to remind myself of the good teachers and staff in Brian’s educational history over the years and focus on getting Brian more of the same which ultimately happened, thank goodness, but you never forget the scars inflicted on your child or your heart when it happens. These are the things that create tough Mama and Papa Bear Advocates. A bad school year also helps one to appreciate the better school years when they do happen because of those special teachers who understand our kids and help them to learn: what priceless gifts they are!

There is one particular outstanding special educator who has made all the difference, along with her staff, resulting in Brian’s great progress this year. To say that I’m elated would be an understatement! Her role as President Of Team Brian and her ability to teach, inspire, and support her staff, students, and parents is the stuff that true legends are made of. Ms. Sam is simply an outstanding special educator and one of the kindest human beings I have ever known!

During Brian’s 16th annual IEP meeting yesterday, Sam demonstrated leadership in an engaging, professional way. She set the tone for the meeting and communicated her points clearly. Sam highlighted Brian’s progress with great pride, but also highlighted areas of need. The meeting went so well because it was fair, balanced, and celebratory. Even the case manager said it was one of the best meetings that she ever attended ! Sam is a realist and an advocate for her students; she has expectations for them and will do what it takes to ensure follow through. She is a wonderful collaborator with both her awesome classroom staff and the families. Sam’s willingness to listen to my ideas and address concerns has resulted in Brian’s progress this year. Furthermore, Brian LOVES to go to school and is happy when he gets off the bus- further confirmation that he is truly happy in school! It’s truly every parent’s wish and hope for their child.

It’s hard to believe that Brian has just 3 more years of special education left. Where did the years go? Hard to believe and even harder to contemplate that he will graduate in 2025. I don’t like to think about that part too much, as it will be a very bittersweet milestone, I’m sure. Another reminder that life goes on and things will inevitably change whether we want them to or not. No, I will not go there. Instead, I will choose to focus on the here and now and bask in my son’s school successes, made possible by a wonderful teacher and her staff. I look forward to what the next school year will bring for Brian and anticipate his continued progress. I am thankful for Team Brian and all that they do to help my son be the best that he can be. The best is yet to come!

Until next time, thanks for reading! 😊

Brian and his wonderful teacher, Ms. Sam! ❤️😊👍🏻