The "C" word

July 7th 2020. 2 years ago today was the day of Dean's surgery to remove a tumor the size of a lemon out of his colon. Just under 1 month before we received the devastating and shocking news that Dean had cancer. I’m not sure if that date, June 9th, 2020 or this one was the scariest.

I have had a hard time figuring out how to write this post, or when. I know it’s a big part of the story, but typing it all out makes me have to re-live it in a way, and it isn’t fun. However, it’s part of it and unfortunately part of life. It's definitely a pivotal time in our lives that got us here, to this trip, and to me typing this out for those who may read it.

So, just a warning… this will probably be a long one. I realized that I have mentioned Dean’s cancer here and there on here but haven’t told the whole story. So, those followers we have gained through our journey ( thank you, by the way) or those not super close to us, probably don’t know too many of the details.

Whew, so here we go…

A couple months before we heard the words, “Dean, you have cancer,” I randomly noticed there was a spot of blood in the toilet. I didn’t really think too much of it at the time, but I knew it wasn’t from me. Let’s be real, do we often talk about what anyone finds or leaves in the toilet? It’s not really a hot topic for most. I guess I just felt the need to ask Dean about it. So, I just casually mentioned, ”Hey, have you noticed any blood or anything when you go to the bathroom?” Dean, being a typical guy, kind of looked at me funny and was like “No, why?“

I told him about the blood I saw and just said, If you notice anything, please tell me- it’s important, don’t ignore it and please tell me. So, he kind of brushed it off and said okay.

A couple weeks later he told me he IS noticing some blood. Hm, okay- even at this time I’m still not thinking anything too serious. A hemorrhoid maybe, right? But I decided to call our friend Emily, who is an ER nurse to ask her. Do we go to the ER? Do we just make a regular doctor appointment? Like, how urgent is this? I explained to her what was going on and she said, “ Well, if it was Nick (her husband) , I would have him go to the ER.”

Say no more, off to the ER we go!

Now, if we remember the great early spring/ summer of 2020- it’s right at the start of the Covid madness and lockdowns. Excellent time to need hospitals and doctors, right? 😏

So, I was unable to go into the hospital with him at all. Had to drop him off at the door and wait. Now ladies, I know I am not the only one who goes through this. We ask our husband, “what did the doctor say?“ what tests are they doing?”

Him- ”I don’t know.” We ask them, Well did you tell them this? “No.” Did you ask them that?” “No” lol. So, I am sure you can imagine how thrilled I was to not be in there asking questions, and hearing the answers. 😑 Long story short for this visit, they took some blood, took a CT with no contrast, and didn’t find anything aside for a small hemorrhoid and sent him home with a script for hemorrhoid cream. Well, that wasn’t going to work for me. I started making calls for GI doctors the next day.

We got an appointment for a consult with a GI a week later ( after me jumping though hoops, insurance approvals, and multiple calls. It should NOT be so hard to get shit like this done, but that’s a rant for another time.) Dean met with the GI doctor, as I got to just be on a phone call via speaker phone. yay pandemic.

The doctor didn’t seem too concerned but we got a colonoscopy scheduled the following week.

I dropped Dean off as instructed to his colonoscopy appointment. They told us I cannot come in, but they will call me when he’s done and I can pull up and they will bring him out to me. About 45 minutes later, I get a call from the office, and they tell me that when I arrive, instead of picking him up outside please put on a mask and come inside to wait for the doctor. In that moment, I knew something was not right.

When I got to the room Dean was awake but said doctor had not come in yet. We waited a bit and then his doctor came in and very bluntly said “ Well Dean, it’s cancer”

I literally felt like I was in a dream. I think we both did. I was not expecting that, and I usually over analyze and think and prepare for the worse. I wasn’t ready for that one. I knew that the official biopsy couldn't have been back yet so immediately I'm thinking, how can he already know that? He had to be wrong. I hoped that he was. He basically said, “I am not 100 percent sure because we need pathology back. but Im 99 percent sure. He continued to show us a photo and explained the mass was about the size of a lemon located in his sigmoid colon. He told Dean, “You are young and healthy, you are going to be fine” I am SO grateful he said this to Dean because Dean just heard those words and ran with it. I am so glad he did. Me on the other hand? Well, I immediately got into work mode and was on a mission to get this done, fixed and over with as quickly as possible. My work mode and keeping busy with getting things scheduled hopefully masking my overwhelming fear and worry. I wanted Dean to just focus on being positive and get through it, and I‘ll do the worrying part.

We still did need to wait for pathology result, but the next step was to make an appointment with a Colorectal Surgeon.

As soon as we got home I started researching surgeons, reading reviews, surgeon credentials, and then trying to figure out who took our insurance AND who can get this cancer out of my husband the fastest. I found the first part way more challenging than I planned. I don’t know how many calls I made that day to the insurance company, doctors, or how much I googled and read but by the next day I had two appointments scheduled the following week with surgeons.

We met with his surgeon, Dr. Belizon in Boca first. Well, Dean met him in person. I met him via facetime thanks to covid. There was no chance I was going to not look the man in the eyes that is potentially going to be cutting into my husband. Speaker phone wasn’t going to cut i, so I had no choice but to facetime.

After going over everything and asking a millions questions, we felt confident with Dr. Belizon. He was one of the first to perform laparoscopic, robotic colorectal surgeries in the area and his confidence and the thought that we could possibly do this less invasive was appealing. We booked the surgery for July 7th.

At this time, before surgery, we knew for sure it was cancer but we wouldn't know staging until after surgery. We were still staying hopeful it was stage 1. Remove the tumor and we are done- no further treatment.

I had Dean's friends and family send me videos sending well wishes for Dean and I made this for him to watch before he went in. I haven't watched it back since that day. I am so glad I still have this and thank you all so much for sending this so I could make it for him. He sure does have a lot of people that adore him, almost as much as I do. ☺️♡

Surgery day was nerve wracking in it self, but add in the fact that I can’t be there? It was torture. I had to drop Dean off for this surgery and not even be able to see him for DAYS later. His surgeon had already explained to us that he would have to stay in the hospital at least 2-3 days, and as we now know there were no visitors allowed at all because of covid.

Little Rant starts here:

Now, I’m just going to say it- That no visitor rule, I don’t care about the covid part, is absolute bullshit. How can it be allowed, or humane even, for anyone to have to send off their loved one alone to a lifesaving, serious surgery and know that you can’t even be there when they wake up? Not be there as they are trying to recover? Not to mention how will you even know that they are getting all the care they need? or comprehending the information being given to them when they may or may not be fully coherent on medications?

I had to also deal with this with my mom. My mom was literally dying, in excruciating pain, and alone. We couldn’t be by her side. We couldn’t get the information as it was coming to try and figure out what was wrong with her or what to do. It was complete bullshit, to put it frankly. Oh and they said, “Well ,just call anytime and nurses will fill you in.” No they won’t and it’s not their fault. They are so busy trying to keep up, or it’s shift change or they can’t tell us anything, the doctors have to, and they are never free or available. It was not until my mom was literally in hospice that I was allowed to see her in the hospital. By then, she was barely responsive and she passed 2 days later.

My heart breaks because I know I wasn’t the only one. Thinking of ALL those people that couldn’t have loved ones with them during the scariest times of their lives, it’s horrific and wrong. Give me a hazmat suit, and let me walk in if you are that concerned about germs. 😤 I really hope that this rule is over and NEVER is a thing again.

end rant.

So, back to surgery day.

We knew the risks of the surgery and the possible outcome. His surgeon told us that he was going to do his best not to have to put in a ostomy bag after he removes the tumor from the colon, but because of the location of the tumor there is a chance. If you don't know what an ostomy bag is, Dean loves to call it his "💩bag." You can google more details if you would like. He also told me the surgery would be about 4 hours.

We say our goodbyes and Dean goes in for surgery, and I wait by myself. This time, they actually let me stay in a little room outside of the surgery entrance just until Dean was out of surgery, Then I have to leave. They give you a number for the patient, and they have a big screen that tells you the status. Surgery prep, operating room or in recovery. I stared at that screen for 6 hours ( 2 hours longer than planned ) when finally the surgeon called with the update. Surgery was successful, took a little longer than planned and they did need to put in a temporary ileostomy. He said that hopefully we can schedule the reversal surgery as soon as he’s fully healed, but if he will need chemo then we'll need to wait until after that is completed. He was able to do the surgery laparoscopically but had to cut one larger incision to remove tumor because of its size. Dean was still in recovery and I hadn't talked to him yet. It took another 2 hours before the nurse finally called me when he was in his room. I had been just sitting in my car in the hospital parking lot waiting for the call. When we finally talked I was so relieved to hear his voice and surgery was over, but it was awful hearing him in that condition and I couldn't be there. I knew that he also wasn't fully coherent to understand that he now had an ileostomy bag. I knew that was going to be shocking for him and it was awful that I couldn't be there with him for that. Dean recovered in hospital very well, and started getting used to the bag set up. He certainly wasn't happy about it, but he took it like a champ and learned how to change it and manage it quickly. He was up and moving in the hospital the first night, and we facetimed as much as possible until he was ready to come home. I was able to pick him up 3 days later. We had to wait a week before we would have the surgery pathology results to know stage and next steps. In the meantime, Dean focused on healing and getting his strength up.

We had a home nurse that was scheduled to come to our house and make sure that we could take care of the ileostomy set up. Honestly, Dean was already a pro by the time she came, and I feel like he was showing her a better way to do it. 😆 We did have some challenges adjusting to what he could and could not eat and figuring out how to make the waste in his bag the right consistency. With an ileostomy as opposed to a colostomy, It is located in the upper intestine. So, the food doesn't have much time to absorb into the body and is mostly liquid and leaves the body a lot more frequent than if he had a colostomy or nothing at all. He can easily become dehydrated. So, without getting into any more gross details, It was frustrating for Dean and we had to learn to adjust to that.

We had a follow up appointment with the surgeon to see how he was healing, how the ostomy setup was looking and to get the pathology results. We were hopeful that we were near the end, and we could plan for his ostomy reversal surgery.

Dean headed in to the appointment, and I waited in the car for the facetime call. I do have to say, Dean was becoming a pro with listening and asking lots of questions when I could not be there. We had a system where we had a note share in our phones with all the questions, notes and Dean typed in all the answers. 😆

Surgeon was happy with how well Dean was moving around, and how things were healing. However, he had some bad news for us from the pathology report. They removed the entire tumor and surrounding margins. Margins were clear, but 13 of the 26 lymph nodes that they also removed were showing traces of cancer. Dean was stage 3c colon cancer. Meaning the cancer had spread to lymph nodes ( so Stage 3 ) and "c" because of the number of lymph nodes. Next step was scheduling to see an Oncologist and getting a treatment plan. Were we devastated? Yes. I really don't have the right words to describe how that time felt. We thought the hardest part was over, but it was only the beginning.

I immediately got the list of oncologists that took our insurance and the research and calls began. Within a week we were in ( you know the drill, I wasn't...I was on facetime) with his oncologist, Dr Gersten. We went over everything and it was decided that Dean would have 8 rounds of the CAPOX chemotherapy treatment. This was a combination of a pill form of chemo and another chemo drug infusion every 21 days. So Day 1 was his infusions combined with his pills 2 times a day for 14 days, and then 7 days off. Dr Gersten wanted to to start the chemo without setting up a port, but said that the infusion drug can be tough through IV but he rather not put another foreign object in Dean if we didn't have to. Additionally, he started Dean on the very highest dose possible. He said, "I am starting you at the very most I can and we will drop the dosages if we need to, but let's see how you do." Dean was all for it. Let's knock this cancer out! 💪🏽

He was scheduled for his first infusion and round 1 of 8 began on August 7th, 2020. We got the chemo pills delivered by mail before each cycle. They were intimidating. They come with huge warnings on the package, "handle with care" "hazardous materials". Oh great, Dean is putting these in his body? The pills were huge and he was taking 5 in the morning and 5 at night.

Dr. Gersten warned us of all the side effects, which by the way- with this particular drug hair loss isn't one of them. I know most people automatically think that if you go through chemo, you lose your hair. That is not always the case. There are SO many different types of chemotherapy with a millions different side effects, but not all hair loss. The most common side effects for Dean would be nausea, diarrhea, fatigue, neuropathy, sensitivity to cold, sore and red hands and feet with blistering and risk of infection and anaemia. Fun. When his first infusion was scheduled, they actually let me come in briefly with him, just so I could also hear the process, the risk of side effects, and what to do, etc. So, they got him all hooked up and the nurses explained everything to us in detail, and then I had to leave. He spent a few hours there getting all the drugs pumped through him. The chemo was very uncomfortable going into his vein in his arm. He described it as feeling like frostbite. After he was done, I picked him up and we headed home. The biggest side effects right away was the sensitivity to cold. It literally hurt to touch anything or try to eat anything cold. The day of infusions and 2 days after were toughest. It was tough to try to get him to want to eat much or stay hydrated but overall he was a good patient 😆. We got through the first infusion and Dean was back at work 2 days later. He continued the pills for 10 days and then he got a 7 day break. 1 round down, 8 more to go.

All during this time we tried to stay active so, we did a lot of biking and walks outside. Luckily we lived on the lake and had our boat. So, we spend a lot of evenings just cruising along the lake and watching the sunset. Anything to keep our minds occupied and get through these 6 months. I was so amazed by Dean's toughness. Infusion days were always on a Friday, so he had the weekend to feel like crap and he muscled through and usually went to work Monday or if it was really bad, Tuesday. He even continued to do projects around the house, like making my dream window seat in our master bedroom. 😍

The rounds got harder each time, and the side effects were getting worse. We still continued to keep Dean on the highest dose of chemo until Dean started experiencing worse neuropathy ( numbness and pain in hands and feet). Dr. Gersten had said this was the one thing he wanted to pay close attention to, because it could be irreversible if taken too long. So, after round 6, Dr. Gertsten decided to keep Dean on the highest dose of the pills, but that would be his last infusion. Dean was thrilled about that (So was I!) The pills were terrible, but the infusions were definitely the toughest. All of Dean's doctors were so impressed with how strong he was and how well he was managing the chemo. His primary and his GI were shocked that Dean never stopped working. I had an appointment with our doctor for myself in the middle of Dean's treatments and the doctor randomly said to me,"Your husband is amazing, I told my wife about him." Yep, my husband is a badass.

The countdown was on, and we were so anxious for Dean to be DONE with chemo. Dr. Gersten agreed to do tests and scans to confirm Dean was all clear before the end of the year, and then he would just have his last round of chemo pills until January 14th 2021.

We had scans scheduled the last week of December. They were scanning his chest, abdomen and pelvis area. I just NEEDED to see that clear scan and know he was officially cancer free. We had the follow up visit with Dr. Gersten on December 31st for results....Dean was NED!!!!!! ( no evidence of disease) All of his tests throughout his treatment had been great and he was CLEAR. We were so ready to celebrate, and it was New Year's Eve.🥳 We went for dinner and drinks just us, at our favorite bar then headed to Dean's Brother and sister in law to meet friends in celebrate. Dean's brother and nieces surprised Dean with fireworks just for him to celebrate. It was such an emotional but fantastic time to celebrate and was a great night.

We still had 2 more weeks of Dean's chemo pills, and then we celebrated finally having treatment OVER and surprised Dean with a dinner out with family. We had just gotten through the absolute hardest 6 months of our lives, but...we got through it.

The last big hurdle was getting the ostomy reversal surgery. Dean could not WAIT. He had grown to despise that 💩 bag. And who can blame him? He wouldn't be cleared to schedule the surgery until 4weeks after chemo was over. You better believe we got it scheduled almost to the day. Once again, I had to leave him there for surgery and he would need to stay in the hospital until he was able to "go" the normal way again. This could take time, as that part of his body hasn't been used for the past 6 months. Surgery went well, and then we anxiously awaited for the "flow" to get him out of there! On the 4th day I was able to pick him up and take him home. Who knew it was possible to be SO excited for a normal bowel movement?, but we sure were. 🥳

We still have to do follow up tests everything 3 months and scans every 6 months for probably at least 3 years, and then we may be able to spread them out more. We now are officially a year and a half of Dean being cancer free, or in the oncology world, NED. Dean is not considered "cured" until no reoccurrence for 5 years. There is still a 50% chance his cancer can come back. I hate that statistic. Am I terrified the "c" word will come back? Yes, I am. I think about it at least 5 times a day, but. I try not to. Dean had this idea to plan this trip during the end of his treatments and I was all for it. The past few years had taught us the most valuable lesson of all--Life is short, and you must enjoy it. Enjoy your life, every moment of it, and love hard. And that is what we intend on continuing to do.

My husband is the strongest, most amazing, and loved man I know, and I don't take one bit of that for granted.

If you can take anything from this long story, please take this part: If something doesn't feel right with your body do not wait. Make the doctor appointment, now. Not getting the answers you need? Push for more test and answers. Insurance is denying you for a procedure? Fight it. I have unfortunately learned through Dean and my mom that you cannot rely solely on the doctors or insurance companies to do their jobs. YOU have to be your own or your families advocate. It sucks, and it's a LOT of work. But it literally could be life or death. I don't even want to think of where we would be if I didn't see that blood when I did. Or, if I just listen to what the first doctors said, or accept the no's from insurance companies.

I cannot thank all our loved ones enough for all your support and love through Dean's cancer, and this journey. Thank for from the bottom of my heart. We could not have done it without you.

So, that is it.That is Dean's cancer story. It still continues for now, but we hope to have this chapter closed for good and a long distant memory at some point.

Until then,

Where is the next stop?

Thanks for reading, It was a long winded one.🤭♡ #deanostrong #checkyourcolon