People often ask me about his type of cancer and why it is so aggressive. Someone from my support group shared this with us and sometimes I don’t have the right words to explain so I wanted you to read it coming from someone else who is going through the same thing as James.
“There is very little research on this rare 1% sub-type of colon cancer. It has never been grown in a laboratory setting anywhere in the world. It is so rare that many doctors never see a case of it. Sadly, sometimes its key differences are overlooked because it is so rare. It typically does not spread into organs like the liver or lungs. Instead, it grows in thin sheets in the peritoneum and is very difficult to see on CT, MRI, and PET scans. Follow up colonoscopies are often normal despite widespread peritoneal metastasis” – Becky
This is exactly what happened in his case. The cancer has spread only around the organs and is being treated based on guideline care despite significant differences in the cell and how it spreads.
Signet Ring Cell is much more aggressive!! Unfortunately, he is being treated just like any other colon cancer.
It was around 4:30 PM yesterday that I received another blow to
my heart. I heard my husband walking up the stairs on the phone pacing around
uneasy. He walked into our bedroom and I heard him say “I am going to put
you on speaker”. In that moment I felt my chest tighten and each breath I
took began to get heavier and heavier. All I remember hearing were the words
“Your CEA level went up to 28”. My heart sank because I knew what that
meant. Although we originally had an appointment scheduled for
today, the doctor wanted to call us beforehand to give us a little bit of a
heads up before going into the office. I appreciated that more than he
knew because the feeling of not knowing made every day that much harder to get
through.
I will know more about his situation after today’s appointment, but based on what he told us yesterday, they saw no improvement. Any sentence that is followed with a “but” is never a good thing. His Oncologist told us that the scan showed the area was stable, BUT that it was hard to read. This just makes me nervous beyond belief because when he had his first scan, that was not clear either which is the reason why he had to have the exploratory surgery. At this point I’m just a fucking mess! I don’t know how to feel, I can’t eat, can’t sleep and my heart is in pain. My brain is so scattered right now too and I can’t even remember the sentence before this one. Bottom line is the chemo isn’t doing its job and we were told that they will be stopping the chemo and starting a new treatment called immunotherapy. I don’t know much about it, but I am definitely ready for today’s appointment. Thankfully I received so much feedback from my support group and they gave me some really great questions to ask during the appointment. We continue this fight and are ready to try the new treatment. #FUCKCANCER.
As I’ve been posting lately, I’ve realized that my previous posts have not included up to date information on where we are at in this battle against Cancer. James resumed chemo on June 24th, 2019 after his exploratory surgery showed that his cancer had spread throughout his abdomen (includes ascites) and is now Stage IV. His current regimen is Folfiri, which is the same treatment that has been used during his last four infusions the last time around. During this time, we were able to see that his lymph nodes have continued to grow, and he has another scan scheduled for August 14th, 2019. If his Oncologist sees additional growth, he will unfortunately be taken off the chemotherapy and the next option is for him to immediately start Immunotherapy. For those that aren’t sure what that is, it is a form of treatment that uses certain parts of a person’s immune system to fight cancer. We are praying daily that this will help him, and the honest truth is that we NEED this to work because if it doesn’t, our only other option would be to find a clinical trial that James would be able to qualify for. Throughout this whole process his Oncologist has been amazing. I see a bond that James and him have created, always talking football at EVERY appointment. It is difficult to see him look so good and with a smile on his face, but in the back of my head I know he’s suffering on the inside.
The treatment that James is currently receiving has really taken a huge toll on his body this time around. It has honestly been the most difficult thing for me to just watch; seeing someone you love hurting and there is absolutely nothing you can physically do to take their pain away or give them a cure. I’ve made 95% of every appointment, and that includes even a visit to the pharmacy to pick up prescriptions. Even with that I still don’t feel as if I’m doing enough. There’s not a day that goes by that I don’t wish it was me sitting in that chair connected to the IV instead of him. At this time in my life I thought I would be planning to grow old with this man and not planning for the worst case scenario. I’m scared and feel so alone at times. I can’t always keep it together, but I can’t let him see me weak. I know it will crush him and I need him to be strong and fight. Being connected to a Medical Social worker for “palliative care” has been a blessing and we’ve been given access to many resources that have made things a little easier. Kaiser has definitely been providing us with top care and I don’t know where we’d be if we went anywhere else.
Right now, I’m doing my best to live each day in the moment and not think of the next day, or the day after or even a few months ahead. I know our time is precious and I want to cherish every moment. Every kiss, every hug, every I love you, and every look into each other’s eyes means that much more because nothing is promised. I made a commitment to James that I would make the rest of his life his best life. The first thing on his bucket list is to see the Northern Lights and that is exactly what he is going to do. I can’t wait to share that moment with him. There will be plenty of tears shared, but the tears are worth the lasting memory that I will forever hold close to my heart. I love this man beyond words and I will continue to write our story about the battle, adventures and special moments our lives have in store for us.
I would like to just take a moment to express my frustration. My life hasn’t been exactly enjoyable over the last year or so and I understand that we all have our own personal battles and life struggles. Myself, better than anyone, understands this as I have spent my entire adult life with ever changing circumstances and have also had several different seasons. My seasons have consisted of depression, fortune, financial struggles, and life lessons. As I reflect back on everything, It seems that I have lived each season more than once. I say that to now say this, I never thought in a million years that I would be experiencing the season that I am living today. For those of you who do not know, I am not only a mother and wife and care for my family, but I am also the caregiver to my mom who suffers from her own health conditions. I am just a daughter trying to do her best at juggling all her responsibilities. It’s not easy to say the least, and at times feeling like an only child with the least amount of appreciation gets demoralizing.
Aside from my own personal struggles, I have also had a front row seat to witnessing a lot of those close to us become distant and not be present in our lives anymore. It’s during times like these that reveal the true character and nature of individuals. This past year has been a learning experience for my family. Our circle became smaller and it gave us the chance to weed out the ones that just don’t want to be part of this fight for whatever reason. This has really upset me and I am disappointed. SOME of the same ones that said “let me know if you need anything, I will be there” are now the ones that are nowhere to be found. For the record, Cancer is not contagious and it’s okay to check in, you won’t catch anything. It is also more than okay to check-in on James or our children directly without asking me for updates. I don’t always need to be the hub of everything going on.
To put things in perspective, we have a close friend whose daughter is battling Leukemia for the third time and she has also gone through two major transplants. I can only imagine how he is feeling as a father but even with all that going on in his life, he still manages to check in on us.
Everything has now made me realize that I need to stop focusing on all the people who don’t show up and give more time, attention, and appreciation to those who do. Those who support and show up need more credit than has been given. I may not always show how much I appreciate each and every one of you individually, but I want you to know how much I truly do. People would be surprised how much a simple “check-in” or text makes a difference. I will make sure to give more to those who want to be part of our lives. Time doesn’t cost a thing, but it’s the most generous thing anyone can give. I would like to use these upcoming months to give our time to those that have been with us all the way through this battle so far, well as much as we can give and when James is feeling well enough to do so. 🙂
I want to give a special thank you to everyone who is in the battle with us. Your support and love mean everything and gives us that extra push we need to get through each day. I love all of you and I don’t want that message to be overlooked in this post. The intent of this is not a cry for help or for pity, I just wanted to express how I’ve been feeling and let those who have been there for us know how important they are to our family.
It was earlier this year, in
January, that I was contacted by a research group from Cleveland, OH. They were
looking for patients whom were willing to donate their pathology for the
purpose of research. Signet Ring Cell is an extremely rare form of cancer
and there is a large lack of knowledge and resources. For those
reasons, this particular group was doing everything in their power to conduct a
study to learn more about it. I spoke with the Study Coordinator and
gathered all the information, but since it was not a priority at the time, we
never followed up with the medical releases they requested. At that
particular time my focus was solely attending every appointment with James and
being there for him to get him through the chemo treatment.
Fast forward 6 months, and I now find myself making every effort to connect with others from our support group with this type of cancer. Even with a second opinion from a Stanford physician, at least four people told me to “run, not walk” and to be sure to connect with Dr. Sanford Markowitz, as he is the most educated and best qualified to give a third opinion. After conducting a short search for this physician, I came across his information and all his accomplishments. I was so filled with joy and hope after reading about his involvement with SRC. After speaking with someone on his team, I was asked to provide a timeline of events and send the information back to their office via email. When I was finally ready to send over the information, I realized that the contact’s email address was already in my address book. To my surprise, this was coincidentally the same doctor that I connected with earlier this year regarding the study.
It’s crazy how things sometimes come full circle and it’s made me realize the importance of taking the time to help others and educate people on diseases and create awareness for early detection. I am extremely pleased to announce that James is now a part of this study. We didn’t waste any more time in providing all the necessary releases and that they needed to obtain his medical information. Once they have everything that they need and it has been reviewed and analyzed, we will connect with Dr. Markowitz regarding a possible third opinion. I understand that this study may not benefit James, but if it can help others who have not yet been diagnosed then we have done our part. It’s important to count your blessings and give back in any form that you can. Your story matters and it can play an integral role in making a difference in someone else’s life.
Who is Dr. Sanford Markowitz?
Internationally recognized for his work identifying key genetics causes of colon cancer and developing molecular tests for early detection of this disease.
James has been in this battle for the past 11 months and we thought we had claimed victory on April 24th 2019. My husband went into what he thought would be his last day of Chemotherapy and although we were being as positive as possible, we knew that there was a high chance of recurrence. Up to this point he had 15 cycles of chemo. As with every situation, there were some good and bad days during those 15 cycles. There had been quite a few consecutive down days for him, but being the warrior that he is, he battled through it.
Though he was hurting on the inside, the most common thing he would hear from people when they would see him outside of the house is “OMG, you look so good”. God knows I wished that was the case for him. I had a front row seat watching him on the bad days. Not many have seen this side of his disease and it’s not an easy thing to watch. I felt so helpless and didn’t know how to comfort him when all he wanted was to be left alone. Think of seeing someone you love more than life itself suffering and you can’t hold them in your arms or kiss them to make them feel better because they won’t let you.
I was crying inside because I felt so guilty for not being able to figure out how to provide the comfort he needed in the way he wanted. Words can’t describe the level of defeat that I felt. He doesn’t know this, but I am not as strong as he thinks I’ve been throughout this whole journey. I’ve had my fair share of breakdowns in the car on the way to run errands and/or work. I’ve curled up in a ball and just laid in the tub wishing it was me with the cancer instead of him. That’s how much I love this man.
All feelings aside, on April 24th I knew he had a long road ahead of him, but I wanted to enjoy THIS day and this little victory. It represented the glimmer of hope we were looking for. More so, the completion of the first phase of the battle and the last stretch was in view. On the last day of his chemo treatment our whole family pulled together and showed up to the hospital to provide their love and support for James. Being surrounded by his children was an amazing feeling for him and I know how much it meant to him to have us all there. As a matter of fact, his older brother Jose, made a four and half hour drive that morning from Reno just to be there for him.
The amount of support James has gotten in the darkest moments of his life has been insurmountable. I would honestly be lying if I said that it wasn’t hard, but those who have been next to James during this time know his vibrant smile makes it all worth it. I’ve always claimed to be the glue that holds our family together and also thought of myself as the strongest person I knew. Well my friends, reality smacked me right across the face with this situation and it made me realize that I am not the hero nor am I as strong as I thought I was. In fact it showed that James was the one that deserved that title as he has been the hero this whole time.
What we thought would be the last day of chemo.. 04/24/19
A few weeks after James’s last chemo treatment, he had his post chemo PET scan. The results came back inconclusive as they showed an object, but not enough detail was present to tell exactly what the object was. On June 17th, 2019 James had exploratory surgery for the doctor to take a look inside and I’m sad to say that they were not expecting to see what they did. The doctor broke the news to us that the cancer had spread throughout his abdomen and that confirmed that he had Malignant Ascites. Malignant Ascites is just a fancy word for fluid cancer in the abdomen. Then on June 28th, 2019 during a drive to Reno, we received another call from his doctor stating that he would be starting chemotherapy again that following Monday. The next hour of the drive was quiet with inner cries. All James wanted to do at that point was make it to Lake Tahoe to enjoy time with me and his kids. That’s exactly what we did, we all had lunch by the dock and not a single mention of cancer was brought up while we shared a meal. We just enjoyed the moment and had precious laughs and conversations.
After my husband began experiencing some minor symptoms that didn’t seem normal, he reached out to his physician and requested a routine colonoscopy. On August 30th, 2018 I will forever remember the moment the Doctor called me to provide me with an update. She said “We removed 2 polyps, but also found a suspicious growth that we sent off for a biopsy”. In that moment my heart shattered into a million pieces. I knew deep down that something horrific was going on with his body and I immediately began to cry, all while my husband (still under anesthesia) was looking at me smiling hoping I would smile back. I felt so guilty because I couldn’t smile back and lie to him that everything was going to be okay. I somehow managed to keep myself together in front of him, though I felt so numb and scared. That moment will forever haunt me for the rest of my life.
Never in a million years would I have imagined my life unfolding the way that it has. Nor did I ever think of myself as the type to want to start a blog and write about my deepest most painful moments. I recently found myself trapped as a prisoner in my own head; feeling so much heartache, self-doubt, fear, defeat, and the list goes on and on. I’ve never felt so low and scared in my entire life. It wasn’t until I recently saw my husband’s vibrant spirit that inspired me to change my whole mindset and embark on this journey with a new mission in sight.
Our lives changed forever last year. On September 24th, he had surgery to remove 1/3 of his colon and at the age of 46, my husband was diagnosed with Stage IIIc Signet ring cell carcinoma of the colon. This news has been a huge blow to our family, spirit, and hearts. This journey of ours does not come with a guidebook or instructions, so we are living each day the best way we know how. I want to document and share our story as I hope to help others in similar situations cope and know they are not alone. This will be an emotional journey for me, but I know I can do it and I feel so inspired to do so.
MOMENTS THAT BRING US TOGETHER 