My Dad’s Battle with Colorectal Cancer

I realize it’s been some time since I’ve posted an update here on my website. If you haven’t followed what was going on via my social media platforms over the past two and a half years, you may just think that I haven’t had any clients or I went out of business, or maybe I’m just really bad at updating my website. The fact of the matter is, to an extent, I have gone out of business. I stopped taking clients after my dad was diagnosed with colorectal cancer in 2017 and have pretty much been on a hiatus since. This post has been something that I’ve been wanting to write, but also dreading. I’m sitting here writing this several days in advance of the two year anniversary of my dad’s passing because I know that his story needs to be shared, but I know I’m going to need to step away from social media, the internet, and technology in general (as much as I can) over the coming days. In fact, my mom and I will be camping for the second year in a row on the anniversary of my dad’s passing. He enjoyed camping and only got to go twice more before he passed, so this is a way that we feel we can honor and remember my dad by doing something he would have been doing if he were here. This is probably one of the most personal posts I’m ever going to put out there for the world to read and I’m going to talk about some things that people don’t really like to talk about because it makes them feel uncomfortable, but I feel that it’s important if it means that it will save even one person’s life. It’s a long one, but I hope you’ll stick with me through the whole experience.

My dad passed away on June 16, 2018 after a very short battle with colorectal cancer. I’ve gone over how this story might go, when I finally shared it, many times over the last two years. I’m not sure that what I’m going to write is going to be anything like I thought it might be two years ago. I’m going to share the facts and I hope that if you take the time to read this you might either be proactive for yourself or you might pass this along to someone who needs to see it.

In 2017, my dad was 59 years old. He had never been for a colonoscopy. He had always heard the horror stories from people about colonoscopies. What stories? I’m not exactly sure, but he’d heard them and kept putting off going. In early 2017, he experienced bleeding while he was going to the bathroom and ended up going to the ER. The doctors at the ER said that it was probably just hemorrhoids, but when they heard that he had not had a colonoscopy, they recommended that he schedule one soon. He scheduled his first colonoscopy shortly after.

We kept telling ourselves that it was nothing. Probably just hemorrhoids. He had bleeding issues from time to time throughout the years and the doctors had always told him it was hemorrhoids. Truth be told, my mom and I had been asking him if he should go get checked for a few years though. He would constantly rush to get to the bathroom right after eating. He would claim it was nothing. It definitely wasn’t normal though. Nothing can really prepare you for the moment that the GI walks in to go over the results of your colonoscopy and tells you that they found a tumor. That moment is still as vivid in my mind as it was that day. I remember going to get food afterward because my dad hadn’t eaten anything since the day before. I remember my dad sitting at the table at the restaurant telling us that he wouldn’t be here in a year. I remember us telling him that he shouldn’t panic and that we were going for additional tests and it would probably be treatable. Little did we know then what the next several months were going to bring.

We went through many months of my dad seeing various doctors and getting more tests before he ended up going to see Dr. Justin Maykel at UMass Memorial Worcester. Dr. Maykel is the Chief Colorectal Surgeon and a pioneer in a procedure that involved removing the tumor without having to make an incision as would normally be the case. The way he does the procedure also meant more of a chance that my dad wouldn’t have to live with an ostomy for the rest of his life. He would have it for several months until he healed and then they would be able to reverse it. My dad had to go through several rounds of radiation and was taking several pill forms of chemo leading up to his surgery with Dr. Maykel. October 31, 2017 was the date of his surgery to remove the tumor. The surgery took 8 hours and was one of the most nerve-wracking days my mom and I had been through up until that point. Dr. Maykel worked hard to ensure that my dad would be able to reverse the ostomy once he healed.

Fast forward to two weeks later. My dad had nurses from Nashoba Nursing and Hospice, a wonderful organization that I can’t say enough positive things about, coming to the house on a regular basis to check his ostomy and help train my mom on how to help him change it. We went back to Worcester for my dad’s follow up with Dr. Maykel. The news was good. They said they had gotten all of the tumor and he got a clean bill of health…Or so we thought.

A couple of weeks later, in the beginning of December 2017, my dad had a follow up with his oncologist. He had been having a bad cough and they did X-rays to see what was going on. They saw fluid on his right lung and sent him to a lung specialist. They removed the fluid and sent it out for testing. I didn’t go with him to his appointment with his oncologist because I had been up late the previous evening trying to fix some issues with the ham radio club website, something my dad normally oversaw but wasn’t feeling up to dealing with at the time. I was with my dad at just about every appointment he went to from his colonoscopy onward. This is the only one I never went to with him and I will always regret not being there for him. He came home and told me we needed to talk. The results of the tests on the fluid from his lungs had come back and the cancer had spread. Now stage IV. We had gone from being told he was cancer-free to two weeks later being told his cancer was now stage IV.

They ended up inserting a tube into my dad’s chest in order to regularly drain the fluid from around his lung. This duty fell on me because my mom could handle everything with my dad’s ostomy, but she had a hard time dealing with draining the fluid. Every few days, I’d connect the vacuum bottle and drain the fluid, note down the color and amount in a chart, and report that to his visiting nurse.

He went for chemo every two weeks. The chemo really took its toll on my dad. Truth be told, if he were here and you asked him if he’d choose to do chemo again, I’m not sure his answer would be yes. My dad was a big guy before his diagnosis. The chemo made it next to impossible for us to find foods that my dad could eat. There was always an issue with either taste or texture. He couldn’t eat chicken because it seemed slimy to him. Pasta was out of the question. We eventually found that he could eat buffalo chicken. The spiciness seemed to be enough to cover the texture for him. It became part of our routine that after his chemo treatments, we’d go to Buffalo Wild Wings and get some buffalo wings for him. It always baffled his doctors that he could do spicy foods, as most chemo patients apparently can’t.

Keeping my dad’s spirits up was difficult, especially when every time we got a bit of good news, bad news followed shortly after. Christmas 2017 was a difficult Christmas. I had hoped that we’d have many more with my dad. I could tell that he was taking everything in as if it would be his last. We had a white Christmas that year. My dad used to be the one who did the snow blowing. He couldn’t do any physical activity due to his condition. Our wonderful neighbors all helped my mom and I clear the driveway. My dad sat inside crying because he couldn’t do it and felt helpless and because he always got emotional when people did something nice for him because, for some reason, he never thought anyone cared.

December 31, 2017, a week later, was my dad’s 60th birthday. I got him a carrot cake from the bakery around the corner from work. Carrot cake was one of his favorites. He was so sick from the chemo that day, he ended up having to go lay down in bed. I don’t think he ever had any of the cake. He may have had a small bite and couldn’t stomach it because of the texture.

My dad seemed to run into complication after complication. He ended up with a blood clot near his port. If you don’t know what a port is, it’s a device they put in either on the right or left side of a cancer patient’s chest in order to insert an IV for chemo. The blood clot meant he couldn’t start his treatments. In fact, his oncologist wanted the port removed and wanted him to go back on the pill form of the chemo he had been on leading up to his surgery. My dad didn’t want this and the surgeon who put in the port felt that the blood clot should not have been a hindrance for him starting his chemo if he was on blood thinners. My dad ended up doing battle with his oncologist and she allowed him to keep the port and start his chemo treatments.

One of the hardest moments for my dad throughout everything was losing his friend Charlie in March of 2018. Charlie had been diagnosed with a malignant brain tumor some years before and had continued to beat the odds. When he was diagnosed, he was only given several months, and yet he survived for, I believe, 6 or 8 years after his diagnosis. We always believed that a large part of what kept Charlie going for so long was his positive attitude. Through it all, he continued to work, joke, and live life as best as possible. Things started to decline for Charlie mid-February. My dad didn’t want to tell him about his own diagnosis because he knew Charlie had enough going on in his own life and didn’t want him worrying about him. Charlie found out though and when he did, he called my dad to find out what was going on. Even with everything he was going through, Charlie was offering my dad words of encouragement and advice, urging him to stay positive. Sadly, Charlie passed away just a few weeks later, which was really tough on my dad. My dad had also lost another good friend a few years prior…to colon cancer. It was tough for my dad to stay positive after losing Charlie.

For a while, things were looking ok. It was difficult trying to keep weight on my dad because he couldn’t eat a lot of things and it’s common for cancer patients to lose weight as well. My dad had been through several rounds of chemo and the oncologist said the tumor looked to be shrinking. The chemo was definitely taking its toll on my dad though. He would tire very quickly and just the smell of some foods would make him nauseous. Even talking about food would make him sick to his stomach most of the time.

My dad went into the hospital at the beginning of May 2018 after not being coherent, running a fever, and having bowel movements, not something that a person with an ostomy should be experiencing. It turned out he had ended up with C. Diff. He spent two weeks in the hospital at that point and he hadn’t moved very much during that time, so he had to go to rehab. The first time they brought him to the rehab facility, he was there for about half an hour before they sent him back to the ER because he developed a terrible cough and his O2 levels kept dropping. The doctors at the rehab facility were afraid he was going to go into respiratory arrest.

He ended up back at the hospital again. He ended up having pneumonia and his kidneys started failing. I watched my dad go through 3 weeks of dialysis, something that was very hard on him. His blood pressure would drop and they’d have to give him meds to keep it up at a safe level. Whenever he would have a dialysis appointment, he would lay awake all night the night before, staring at the clock and asking what time it was. At some point, he lost his voice and the doctors couldn’t figure out why. They had a specialist come in and scope him, but they didn’t see any obvious reasons for why he had lost his voice.

Next came the recommendation from his attending doctor that we talk to palliative care. Now, I didn’t know a thing about what palliative care was until this point. My mom and I had been alternating staying with him during the day and overnight. While my mom was at work, I would stay with him and she would come to the hospital after work and stay overnight. The palliative care team happened to drop in while it was just my dad and I. That’s when they essentially dropped the news that my dad was declining. It seemed as if this came as a surprise to my dad and, while I realize it’s their job to inform us and be honest, I feel like this was not news that gave my dad the will to fight. My mom arrived at the hospital shortly after and I filled her in on the conversation. The palliative care team told us they would come back the next day to talk to my mom and I. I’ll never forget holding my dad’s hand and telling him that we weren’t going to tell him what to do, but that if he had the will to fight, we would be with him and if he didn’t feel that he could fight anymore, we would still be with him and support him, as much as we weren’t ready to lose him. He seemed to get a second wind. My brother and his family came up from South Carolina that afternoon. I went home and picked him up and brought him back to the hospital. My dad seemed to have turned towards improvement. He was reading a paper and sitting up in bed. Things were looking better. He wasn’t ready to give up.

A few days later, they attempted to send my dad to rehab again. He hadn’t eaten much during his time in the hospital, so they had to teach him how to eat again because the muscles in his throat had weakened and if he didn’t eat a certain way, they said he could aspirate his food. He was at the rehab center for a couple of days when I got the dreaded late-night phone call from my mom telling me that they were taking him back to the ER because his oxygen levels were dropping again.

I always thought I’d end up sharing more details of my dad’s final weeks, but I honestly don’t know if I can because just writing the last several paragraphs was hard enough. Anytime I talk about this, which I don’t do very much in this kind of detail, it’s very hard and brings back a flood of very sad memories. I cried my way through writing everything up until this point, so the remaining part of my dad’s story is likely going to be a summarized version.

After the third trip to the ER, my dad was in very bad shape. The fluid from the tumor had moved into the left side of his lung. His O2 levers were incredibly low. The dialysis was taking its toll on him. The next day, they moved my dad into a regular room in the hospital. The following day, he told us that he didn’t want to suffer anymore. His last wishes were that he didn’t want to die in the hospital. We made the necessary arrangements for him to be able to come home on hospice. He hadn’t been home in 5 weeks. The doctors were worried that he wouldn’t survive the ambulance ride home. We had to push for them to let him come home. They agreed, but the EMT’s had to let us know that if he coded in the ambulance, they’d have to divert to the nearest hospital. I don’t think I’ve ever driven as fast as I have in my life to get home from the hospital in Worcester because I was afraid my dad wasn’t going to make it. I said goodbye to him at the hospital before they left with him in the ambulance as if it could be the last time I would see him. Fortunately, he did make it home.

My dad wanted to have a big birthday party during the summer because he had never really had one since his birthday fell on New Year’s Eve. We had plans to go camping that summer and we were going to have a big party with family when we went camping in Maine. That was not going to be an option anymore, so we invited everyone who we knew how to reach on short notice to come to see my dad when he got home. I would say we had probably 80 people come through the house that Friday.

Unfortunately, my dad opened his eyes and spoke to us for the last time the night before his party. They had set up a hospital bed for him in the living room. My mom slept on the couch and I had moved his recliner over by the bed and we both slept in the living room with him during his final nights. I had fallen asleep for a short period of time when I heard my mom and our neighbor, an EMT who had offered to help keep watch over him, talking to him. All he kept saying was that he was ready. We told him we loved him. He said he loved us. He kept repeating it over and over before he eventually closed his eyes and went to sleep.

We had a big party for him the next day. I had hoped he would be awake, but he never opened his eyes again after he said he loved us the night before. I can only hope that he knew how many people came to see him. I’m sure he would have been crying if he were conscious because for some reason, he just never thought people cared about him enough to come see him like that. It’s not the party we ever thought we’d be having for him, but I hope he knew it and felt the love around him.

The next morning, I woke up around 7 am and woke my mom. The hospice nurses had told us what to expect toward the end. I knew he was passing. I went and woke my aunt. She and my cousins had come to see him. We all sat with him and by 7:15 am, he was gone.

60 years old. My dad was 60 years old. I share all of this because if my dad had gone for a routine colonoscopy at the age of 50, like your advised to do, he might still be here. He’s not going to get to see his grandkids grow up. He and my mom aren’t going to grow old together. The day that he told us he didn’t want to suffer any longer, I promised him that I would make sure my mom was taken care of. The last two years have not been easy, but I’m doing my best to make sure not to break that promise to him.

You may be wondering why I’ve shared so many of the details of my dad’s story. I know of a number of people who haven’t gone to get a colonoscopy yet when they should have. They’re either of an age where they should have, they have a family history of colorectal cancer, or both. There’s always a variety of excuses I’ve heard for why people don’t go for one. I said at the beginning that my dad hadn’t gone for a colonoscopy because he had heard horror stories. I could tell you that based on his experiences with a colonoscopy, it’s not as bad as people make it out to be, but I have personal experience.

The story that I haven’t shared yet goes back to shortly after my dad’s colonoscopy. I had an experience with bleeding one night. Given everything that my dad was going through, he wanted me to go to the ER to get checked. Much like my dad, they told me that it was probably hemorrhoids, but that given my dad’s medical situation, I should schedule a colonoscopy. I’m going to tell you from first-hand experience that a colonoscopy is not as bad as people make it sound. The worst part is the prep. I had to drink a gallon of this solution that, pardon the graphic depiction, basically cleans out your entire insides. Don’t make any plans for the next 18-24 hours because you’re not going to be spending much time out of the bathroom. When I tell you that’s the worst part, I mean it. And it’s only a day out of your life. They put you under anesthesia for the colonoscopy. You’re not awake. You don’t feel anything. Sure, there may be some people who had some bad experiences with a colonoscopy, but I think those cases are few and far between and the odds of going through an experience like my dad did are much higher than the odds of a complication with the colonoscopy, especially if you have a family history or are of a certain age.

I was 30 years old when I had that colonoscopy. The doctor removed three polyps. She told me that if I waited until 50, I would likely be in the same situation as my dad. I want that to sink in for a minute. I was 30. With the age of people getting diagnosed with cancer getting younger and younger, I would be a huge proponent of the recommended age for a colonoscopy being lowered to 35 or 40. My brother now has to go for his first colonoscopy at 35 and we both have to go every 5 years because of the family history. I want to note that prior to my dad’s diagnosis, we had no family history of colorectal cancer. None. All my dad and I had was symptoms that we were led to believe was something other than what it was or what it could have been.

I’m going to leave you with this – It’s very hard to put into words what my family went through during the last year of my dad’s life. I’m sure I didn’t do it justice. I can tell you that I am heartbroken not having my dad here. Watching my mom meltdown at his bedside the minute that he told us he didn’t have the fight in him anymore because she was getting ripped off of many, many years with him was gut-wrenching. Seeing my dad depressed, sad, and at the end, suffering, was probably the worst thing I’ve ever been through. I can tell you right now that no child wants to see their parent go through that. Are you a parent? Are you of an age where you should have had a colonoscopy by now? Do you have a family history of colon cancer? Have you had any abnormal symptoms? Have you had a colonoscopy yet? If you answered yes to the first four questions and no to the last, why? I can assure you that your family does not want to see you go through what I watched my dad go through. No one should have to go through that. Colon cancer is one of the most preventable forms of cancer if caught early. I’m begging you, if you have symptoms or if you’ve never had a colonoscopy and you’re of an age where you should have, please get one. I promise you, they are painless and it could save your life.

It’s hard to believe that my dad has been gone for two years. It seems like both much longer and also like just yesterday. I miss him a lot. Some days are harder than others. I’ve had a lot of those hard days recently. I hope he would have approved of my mom and I continuing to use his truck to go camping and our efforts to keep up the house and the yard and continue to live a semi-normal life. I wouldn’t call any part of my life since his passing “normal.” I stopped playing guitar for some time after he passed away. I still do photography, but mostly landscapes and documenting trips with my mom and family. I only recently started getting back into playing my guitar again. I know my dad wouldn’t have wanted me to give it up, but he was a big part of the reason I started playing back in 5th grade. That’s a story for another time. I’ve had many hobbies and interests that went by the wayside for a long time after my dad passed.

If you’ve read this far, thank you. I encourage you to share my dad’s story with others. I would like to think that if something good can come out of losing my dad to this horrible disease, it might be that people educate themselves and take preventative measures. Even if it’s just one person.

If you care to stick around for a bit longer, I want to take a moment to thank a few people (in no particular order) who cared for my dad and helped out my family during his final year.

I’ll start with Dr. Maykel and his team in the Colorectal Surgery Department at UMass Memorial Worcester. My dad had big plans to thank Dr. Maykel once he was healed and living a semi-normal life again. He was so thankful that he had found out about him and was able to have him do the surgery. He spoke very highly of Dr. Maykel and his team everywhere he went.

His Oncology Team at the UMass Memorial Burbank Campus in Fitchburg took great care of my dad and I know he was very grateful for everything they did for him. He always looked forward to seeing his nurse, Emily.

The nurses and staff at Nashoba Nursing and Hospice. They were fantastic. His visiting nurse, Jane, always put a smile on my dad’s face when she would come by to see him and check on things. Even when he was in the hospital, Jane called to check on how he was doing throughout his stay. When he came home on hospice, the hospice team took great care of him. They made sure he was cleaned up and ready for his party. As hard is it was to discuss the fact that he was ultimately going to be passing in a short period of time, they walked my family through what to expect which made it a little easier on us. I think I would have been a lot more scared about some of the things I saw in my dad’s final moments if they hadn’t told us what to expect.

Then there are all of the doctors and nurses that took care of my dad during the five weeks that he was at UMass Memorial. He had one nurse in particular when he was on the cancer wing – Gary. Gary was fantastic. He was one of the few people that could put a smile on my dad’s face during his final weeks. Apparently he had also done a stint at Friendly’s. I’m not making that up. He told us he worked there years before. Word on the wing was that he made some of the best milkshakes in the place. His milkshakes were one of the few things my dad could stomach while he was in the hospital.

I would be remiss if I didn’t mention our wonderful neighbor, Amy, who took care of all of our pets for us while my mom and I were at the hospital. We practically lived there for 5 weeks with my dad and it would have been incredibly difficult to have to come back to the house several times a day to walk the dogs. Amy also ran errands for us and brought the dogs to the hospital to visit my dad a few times, something that we didn’t know we were allowed to do early on, but was a huge deal for my dad. He loved his dogs and getting to see them really lifted his spirits. I know it meant a lot to him that Amy brought “the boys” out to see him. Amy and her family continue to remember and honor my dad, particularly when the Relay for Life rolls around each year. A few days before my dad passed in 2018, Amy and her family were participating in the Relay and did a luminary in honor of my dad. In the past two years, my mom and I are inevitably left with tears when I’m scrolling through Facebook and realize the Relay has started and Amy has posted pictures of the luminaries for that year, which have included a bag in memory of my dad. It means a lot to us and I can guarantee you that if my dad were here and those bags were in honor of him, he’d be crying too because it would have meant a lot to him.

I had somehow discovered Heart and Stone Jewelry on Instagram and realized while we were in the hospital that Julie, the owner, was based out of Shrewsbury, not too far from UMass Worcester. My sister in law gave her a call and Julie came to the hospital to make custom fingerprint jewelry for the family using my dad’s fingerprints. To this day, I wear my pendant with my dad’s thumbprint everywhere. The only time I don’t wear it is when I’m kayaking or doing any activities where I’m worried about it getting lost or damaged. These charms are wonderful mementos of my dad.

My dad’s employers and co-workers at AMSC took great care of him through his entire ordeal and the HR department took great care of my mom after his passing. Not a lot of employers would have taken as good of care of my dad or the family in a situation like that.

I can’t possibly say “thank you’s” without including my employers. My bosses were very flexible with my schedule, particularly when my dad was in the hospital. It meant a lot to be able to be there for him and I know it meant a lot to him that they were so accomodating of my schedule. It was hard for my dad to be home alone. He’d often get buried in his thoughts and end up depressed and sad. He didn’t like being alone. I was very fortunate to have been able to be home with him most days until my mom returned from work.

If you know anyone who is going through a cancer battle, The Healing Garden in Harvard is a wonderful place. I’ve mentioned that my dad was dealing with quite a bit of depression and sadness. I forget how I initially found out about The Healing Garden, but finding them was one of the best things to happen during my dad’s treatments. We only had the opportunity to visit once, but that one visit made a world of difference. We met with one of the Executive Directors who listened to my dad’s concerns and some of the issues he was battling with and she helped him realize that he was not alone in the way he was feeling or what he was going through. She offered some ways to help. I felt like my dad walked out of there feeling rejuvenated and in a much better mindset knowing that he wasn’t alone in his battle. They offer a lot of wonderful services from art classes to therapy groups to acupuncture and massage and musical performances in the garden. They also offer these services to caregivers. I can tell you that my mom and I did our best to hold it together for my dad, but it was hard and I absolutely would have attended the caregiver support group. The garden is a wonderful place to visit too. I recently stopped over to take some photos and videos to be shared with patients who can’t otherwise visit the garden. That’ll be a future post of its own.

I will be forever grateful to Nicole at Nicole Lopez Photography for fitting us into her schedule and traveling to us to do family photos a few months before my dad’s passing. Nicole took the beautiful photo of my dad at the beginning of this post. I had hoped that we’d have many more family photos but knew that there was a chance that these might be the last, especially with my brother and his family living so far away. I will always treasure these photos of my dad. A special thank you to Chad Mills for use of his studio space.

I’m sure there are a number of people I’m forgetting, so I apologize if you’re not here, but know that we appreciated everyone who was there for my dad and my family.


Facebook Share|Tweet Post|Email Post|Contact Me

Your email is never published or shared. Required fields are marked *