Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Melissa, a nurse from Sandy Hook, CT and a mother to a 16-year-old daughter, was diagnosed with a jugular foramen schwannoma–a rare kind of brain tumor involving nerve cells and which arises from or extends into one of the two large openings in the base of the skull through which structures like cranial nerves pass.
Melissa first started experiencing symptoms including frequent migraines in 2012, but they were misdiagnosed as being due to Lyme disease, partly because she had a visible tick bite diagnosed with the disease. In time, her migraines became extreme and were accompanied by terrible vertigo, and she also started to have trouble swallowing and to have voice hoarseness. In 2016, she had an MRI conducted, and it revealed the tumor.
Her doctors went back to the scan conducted in 2012–and, by comparing it with the 2016 scan, were able to determine the tumor’s progression over time. The doctors brought up many possible treatment options, including radiation and traditional chemotherapy. But Melissa took her time and did thorough research, and ended up watchfully waiting until the time came to take action.
At that point in time, Melissa’s doctors found that her tumor, although benign, was wrapped around and was starting to affect 3 of her cranial nerves, which was why she had been finding it increasingly hard to swallow, and also that her jugular vein and carotid artery were already completely blocked by the tumor.
Melissa chose to undergo a craniotomy, brain surgery that involved the removal of part of her skull so that the tumor itself could be accessed and excised. Her doctors, however, could remove only part of the tumor and were forced to leave in portions that had invaded her brainstem and cervical spine. Moreover, she experienced significant complications post-surgery–she woke up paralyzed on her left side and unable to speak properly.
Melissa is currently undergoing procedures including facial retraining to enable both sides of her face to communicate correctly again, and regrafting of those parts of her face where function has not yet returned. She has also had a Gore-Tex implant injected into her vocal cords to help strengthen her voice. She and her doctors are also continuing to monitor the remainder of the tumor.
Melissa is sharing her story to help put a face to this rare brain tumor and to show that there are medical interventions to counter it. She wants people to realize that life is short and to prize every moment, because, in her words, “Even the little moments are the big moments.”
Name: Melissa C.
Diagnosis:
Jugular foramen schwannoma (rare brain tumor)
Initial Symptoms:
Plenty of migraines
Headaches with vertigo
Trouble swallowing and voice hoarseness at the end of many of her days
Treatment:
Surgery: craniotomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Share your cancer journey and make a difference. Whether you’re a cancer survivor, patient, caregiver, or advocate, your story is important and matters. Sharing your story with others can inspire hope, educate, and create a lasting impact.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Christina P., or Chris, was diagnosed with stage 4 pancreatic cancer and given 6 months to live. That was 16 years ago.
No less than 5 years prior to her cancer diagnosis, Chris had already been struggling with its initial symptoms–weight loss of as much as 100 lbs and bad stomach issues. Her diagnosis stunned her, especially when she found out that the affected parts of her pancreas and liver could not simply be removed, and when she was told she had just a few months left to live. Additionally, she was dissatisfied with the doctors she initially saw and the treatment options they discussed with her.
But after Chris found the right team for her at the Cancer Treatment Centers of America (which now operates as a nonprofit called City of Hope), she worked with them on her treatment plan and prepared to fight.
Chris’s treatments proved to be intense, especially her intra-arterial chemotherapy regimen. But they were effective. Although she has not been declared NED, she had her last chemotherapy session in December 2011 and was placed on a “chemo holiday” in January 2012–which is still ongoing.
Chris now helps make sure that other cancer patients, including those who have pancreatic cancer, get not only support but also reassurance, advice, and hope. She sits on the board of the National Pancreatic Cancer Foundation and also founded her own nonprofit, the Purple Iris Foundation. Her foundation works to raise awareness regarding cancer, provide support, and give hope to individuals and families affected by cancer in Maine. She also tells her story to help others like her learn about the importance of faith and hope, even when facing the most dire of situations.
Name: Chris P.
Diagnosis:
Pancreatic Cancer
Staging:
Stage 4
Initial Symptoms:
Significant weight loss (at least 100 lbs.)
Stomach and digestive problems
Treatments:
Intra-arterial chemotherapy to liver and pancreas (cisplatin, mitomycin, oxaliplatin)
Intravenous chemotherapy (FUDR, leucovorin)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I pinch myself every day, grateful for every breath I get to take.
I really do not waste my 2nd chances.
Introduction
My name is Christina or Chris.
I am 56 years old, and I am a 16-year stage 4 pancreatic cancer survivor.
Pre-diagnosis
My story started approximately 5 years before I was diagnosed; approximately 2003 to 2008.
I had significant weight loss of I would say at least 70 pounds.I went from 160-170 pounds down to 100 pounds soaking wet.
At that time, the doctors I saw did not see anything wrong with the weight loss, and neither did I. I ran a daycare, so I was always running around after kids.
It was the first time I was skinny, and people were asking me, “Are you okay? You’ve lost a lot of weight. Your clothes are hanging off you!”
I also had a lot of digestive issues; I was popping Tums all the time.
I got tired of having to deal with all that, so I went to my doctor, and they threw me on some Nexium and Prilosec; they did neither scans nor an MRI. They just thought that those medicines would suffice.
Well, fast forward a year, and they had not worked, and I got tired of going to my doctor, so I stopped seeing them, and just started taking Tums again.
A couple years later, I had changed careers, and worked at a call center for a major bank.
At work one day, I felt like I was dying, and when I say that, I mean I could not eat, I could not urinate, I could not poop, and I literally felt like everything was stopping in my body and it got so bad that I started crying to my boss saying, “I have to leave.”
I went and called my doctor and got in the next day and they ordered scans. They said, “Chris, you are never sick.” I replied, “Well, I was, but I just got tired of coming to you because you did not take what was going on seriously.”
Discovery and Diagnosis
My cancer was finally diagnosed in 2008.
I think that was a Thursday or a Friday, and I got the scans.They got me in quick to get them.
The MRI was on a Monday or Tuesday. I had gotten the call to come in, and I said, “Well, can you just give me the results over the phone.”
They told me that I was not going back to work at this point because I just was not feeling good, and when I went in, I did not bring anybody with me because I thought it was just another appointment.
That is when they told me I had a 5-and-a-half-centimeter mass in my pancreas and numerous lesions in the right lobe of my liver.
They did not call it cancer because it was just my PA, but she was crying when we were talking, so she knew the significance of it.
My life flashed before my eyes.
When I asked her if they could just remove it all, she just shook her head and said no. I was like, “Oh. Oh!”
She also mentioned an oncologist, and I said, “Wait a minute, what!” Then I just lost it.
After that, I was in denial until I met with the oncologist. I kept thinking they had the wrong person; it was something stupid, an old sports injury, but reality set in when I saw the oncologist.
Consultation with the Oncologist
Oncology came about 2 weeks later with me advocating.
My appointment was set out a month later, and all the reading I did said that I had 6 months to live if it was a late stage. I did not know the staging at the time, so I had no idea.
When I got there, I went in and met my nurse, and I called her Nurse Ratched. She was not very nice. She asked me if I needed any Ativan, and I told her I was fine. I guess she was trying to prepare me, but I am not sure.
The oncologist comes in, and he was a nice guy. He told me I had stage IV pancreatic cancer. I said, “Oh, ok.”
I just sat there wrapping my head around it, and I did not ask him for my time frame to be alive, but I was told I had 6 months with treatment.
“Woah! I am 40 years old; how can that be? That cannot be. There must be something I can do!”
I was numb at that point, and I said, “Okay, well, I would like to have a second opinion and would like to go to Boston.” I live in Maine, so Boston is the next place down, so to speak.
That is what got “Nurse Ratched” started up. She said that they could do just as well up here, and I said, “I do not feel that this is the place that I need to be to beat this. No offense to you, but we are rural, and I would like to go and get a second opinion.”
With a little convincing, more from me, I successfully got them to schedule me a second opinion. That took me roughly 2 weeks to get into.
I went down to Boston, and I talked to the oncologist via email. She had a clinical trial, but she said I had the wrong type of pancreatic cancer for the clinical trial. I went down anyway for the appointment.
They kept changing where it was and who I was to see, but I finally got in to see my oncologist, just to be told to go home and to do what they told me to do and get my affairs in order. I asked them, “What are you guys not understanding? All you have to do is get me in the ring, and I will fight.”
I went home after that. It was laughable. I had to laugh because I did not want to cry.
Cancer Treatment Centers of America
At that point, I had a list of the top ten cancer facilities in the United States. I had been seeing a commercial for Cancer Treatment Centers of America, and it featured a long-term survivor of stage 4 pancreatic cancer named Peggy Kesler.
I did have some insurance issues which had to be addressed to get out there. Changing insurance is like an act of Congress, literally. You must applyfederally to get that changed. The major bank I had worked for, I had some great advocates there, and through them, they found a loophole that I could change my insurance through a life-changing event. That is either getting married, having a child, or moving. My boss said that he would marry me, and I replied, “I love you for that, but no.” I did appreciate him wanting to do that. I just did not feel that somebody else needed to go on this journey; I just could not do it.
My other big boss found a loophole with changing address, so the facility I went to is in northern Chicago, and I took out a P.O. Box there, which changed my address. That gave me the change of insurance that I needed to get to the facility of the Cancer Treatment Centers of America.
That was a whole story in and of itself. They flew me and my mom in, and we got to have our first consult, a 7-day consult. They run you through everything, and everything is under the same roof, so you do not have to go anywhere.
We were treated like rock stars as soon as we walked in. I was not full of faith until I stepped through those doors, and I felt God had His hand on me. I did not speak about faith a whole lot prior to cancer, but I must say that they gave me my faith back, and they gave me a lot of hope.
They did not tell me that I was going to die. They said, “Well, you are young. This is what we are going to do for you. Just let us know.” I replied, “I am here–let’s do it. Let’s start treatment.”
Treatment
Intra-Arterial Chemotherapy
The treatment regimen I had was a clinical trial that was called intra-arterial therapy. It was a clinical trial between MD Anderson and Cancer Treatment Centers of America, and two oncologists worked on it.
My brilliant oncologist was Dr. Robert Levin. I was a good candidate because I was young, and I had not had chemo.
Basically, it is like a health catheter. Only it goes directly to the organs that are impacted by cancer and, for 15 hours, circulates 40 times the amount of chemo through those organs. So, in my case, through my pancreas and liver.
I was strapped down and had sandbags so I could not move and even some morphine. I was able to do one of those treatments each month.
My intra-arterial was cisplatin, mitomycin, and I want to say the third was oxaliplatin or something like that. They were 3 old-school drugs.
With the intra-arterial, I went through at least 8 to 10 blood platelet transfusions. I missed a little bit of chemo. I may have taken 6 weeks off when that happened, but every 3 to 4 weeks, I was out there getting it, and my job was to make sure my body was ready for whatever they did.
My intra-arterial treatment was one of the hardest things I have ever experienced medically before pancreatitis. I knew it was going to be hard, but I did not realize how hard it was.
Now that I look back on it, I think I just did what I had to do to survive, but when I look back on it now, I think, “Wow, just wow!”
They do not even do the intra-arterial anymore because of the toxicity that it can cause, and people can bleed out if they move. You are just as good as dead because the chemo will go into your body, the full dose of it, and that would probably kill you right off the bat.
I did a total of 4; I did one in August, September, October, and November. Then my blood work plummeted: platelets, red blood cells, white blood cells. Everything just tanked.
Intravenous Chemotherapy
So I ended up having to stop the intra-arterial treatment. But I was also doing a drug combo called FUDR, which has leucovorin mixed in with it. That was my regular chemo that I continued with for 3 and a half years.
I started to get neuropathy, and we did not know if it was from residual stuff from the intra-arterial therapy, so they dialed back my FUDR so that I had a better quality of life as well, and the neuropathy came to an end.
I am very grateful for that.
Really, it was just learning to live with the fact that I might have to do chemo for the rest of my life, and it was just preparing myself for that and the chemo; they dialed it back enough that I had 2 to 4 days of being down and then the rest of the month I was out learning to live again.
I would go to concerts. I would go to ball games. People were buying me tickets to things left and right and I was saying, “Let’s do it!”
I would get back from something, and the next morning, I would have to catch a flight out, and I knew I could sleep on the plane.
I knew if I only had a certain amount of time, then I wanted to make sure I utilized my time doing what I really wanted to do and what I loved.
Chemo Holiday
I was put on a chemo holiday in January 2012.
I had my last chemo in December 2011, and when I got in, my oncologist, Dr. Levin, said, “We are not doing chemo this month. We are going to have you go on a chemo holiday.”
They wanted me to “go on holiday” because it would allow my body to kick back in and see what it can do.
Like I said before, I had 4 intra-arterials that were 40 times the amount of chemo, and then I had already had 3 and a half years of chemo every 3 to 4 weeks. I have not ever been able to figure out how much chemo I had, but it was a lot.
I did not want to go on a chemo holiday. They had to talk me into it. I was scared, thinking that the chemo was what was keeping me alive. But in the end I agreed to it.
December 2011 was the last day of my chemotherapy, and I have been on a chemo holiday ever since.
I go back every 3 months for scans. Between my 1st 3-month check and my 2nd one, I started with what I thought was a gallbladder attack. Once, I had to go in locally here in Maine, and what they realized was that my pancreas was shriveled up because of the chemo, and all I had left was the head that they could see.
My liver is doing great because that regenerates, but the pancreas does what it wants when it wants to, and it can’t be forced to do otherwise.
We just work symbiotically together and find the best way through each day.
Uncharted Territory
As I have been getting into treatment, I started looking into what to do if your pancreas stops working.
You cannot live without a pancreas, and I am thinking, what happens if it stops working? What do you do? Nobody can really tell me that, even an endocrinologist.
I am in uncharted territory right now. I have gone to Johns Hopkins and NYU, and had a great gastro doctor at what is now the City of Hope. Basically, they told me that we are in uncharted territory.
I said to them, “Okay, great, how about you study me.”
My whole goal is to get somebody to study why I survived and how my body is acclimating well, where most people would be in bed most days.
Being Positive–Giving Hope
I wanted to share how important it is to be positive.
You have to be positive. You really do. People say it is kind of toxic positivity, but I tell them those are your words; you can be whatever you want.
For me, being positive is how I get through my life, and that is just how I have to be because you do not get second chances. I have lost a lot of friends to pancreatic cancer at all stages.
So, I am going to be that positive person. I am always going to remind you that there is light at the end of the tunnel.
I talk to people all over the world with pancreatic cancer, and I leave them better than when I found them because they are scared and crying, and by the end of the conversation, we are laughing, and they have the tools and the positivity and the hope that they need to face it head-on.
If anybody wants to hear the whole story, I am writing a book. It is just that I have to process things as I write it and a lot of that stuff is pretty heavy, and it is a good way to let it go. I am hopeful that by the middle of next year, I can have it done.
Resources that Helped Her and Which Can Help Others
I used a non-profit called Patient Airlift Services to help get me out there for treatment every time I had an appointment. They did not miss once. Occasionally, they still provide me with vouchers to get out for my checkups.
It is a wonderful organization that helps people and kids with cancer get to where they need to go. I still go out for my checkups out there.
I do have my own non-profit here in Maine, the Purple Iris Foundation, and we can help if you are from there. It was started because of my battle, and it started with me planting hope gardens and Purple Iris because it means faith, hope, courage and wisdom and all of these things I am still gaining today.
So, we wanted a soft name for a not-so-nice thing like cancer, and we have grown to where we now do patient assistance grants, monthly grocery cards, and gas cards for low-income “Mainers.” That way, they can have a leg up on getting to their treatments and eating nutritious food and things of that nature.We do all cancers, but pancreatic cancer is my baby, and I will always be an advocate for that.
Pancreatic cancer has some great financial assistance elsewhere too, like the National Pancreatic Cancer Foundation Project Purple, there is one in Connecticut, and there is the Dawn Hill Fight Foundation.
So, anybody that is out there facing this, there are so many places that you can call with pancreatic cancer, and they can get you in for clinical trials.
I am going to be that positive person.
I am always going to remind you that there is light at the end of the tunnel.
Final Thoughts
Seek out and get yourself second and third opinions. Do not wait until you start treatment to find a second opinion. You need to do it before you start treatmentbecause your first line of treatment is your most important. After all, that is your first line of defense. Always just do your due diligence before actually starting a treatment.
Do not settle. Just do not settle. People do not settle on buying cars; they go to find the best deal. Why not find the best possible treatment facility for your pancreatic cancer?
Find good facilities. Reach out to doctors. You want to have that good team. Treatment needs to be a team approach. And it is also crucial to find a place where you just feel comfortable and where they have your back.
Have backup plans just in case your main plan does not work. Create that game plan, so you know in your head, ok, well, if this does not work, then we have this, this, and that.
Clinical trials are so very vital. I would not be here without a clinical trial.
Nutrition is huge. Keeping your body fueled is such a key to survival.
We are all scared. Cancer is a scary thing. I had to put on my big girl pants and just have faith that I was getting to the right place and that faith has stayed with me for the past 16 years. It took me 1200 miles from my home, but I found a way to make it happen.
Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatment: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
Cancer Details: Found after Galleri blood test and MRI 1st Symptoms: None Treatment: 5FU (folfirinox), Gemzar, NK cell expansion therapy, Dendritic cell expansion therapy, Neoantigen peptide vaccine
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Nine years ago, Alli was diagnosed with colon cancer, but what she actually has was appendix cancer–and she only found that out many years later. She is currently NED, or “no evidence of disease,” and in her words, “It’s taken a lot to get here.”
Alli had initially experienced intense abdominal pain, which had been diagnosed as appendicitis. Her appendix was successfully removed, but its “angry” appearance led her doctors to send it to pathology for a closer look. It was initially diagnosed as colon cancer because it behaved like colorectal cancer. She then underwent surgery to remove a portion of her colon.
Alli was declared NED and enjoyed 7 years of being cancer-free before she experienced what seemed to be a recurrence of her colon cancer–but her doctors finally determined that what she had was actually stage 4 appendix cancer.
Alli is sharing her story with us today not only to stress the importance of proper diagnosis and treatment as well as advocating for oneself, but also to help shift perspectives regarding stage 4 cancer and how it may not necessarily be a death sentence; to establish the importance of properly listening to one’s body; and to reframe healing after cancer as an opportunity to build a better, more complete version of the person one used to be.
Name: Alli M.
Diagnosis:
Appendix cancer
Staging:
Stage 4
Symptoms:
Severe abdominal pain
Treatment:
Surgery (right hemi colectomy, appendectomy, HIPEC)
Chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with avastin and xeloda)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers Treatments: Hyperthermic intraperitoneal chemotherapy with mitomycin C (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
Symptom: Severe abdominal pain Treatments: Surgery (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with bevacizumab & capecitabine)
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Elizabeth was diagnosed with stage 4 colon cancer on March 14, 2019, and, after chemotherapy and surgery, was declared NED in July of the same year. On the first of July this year, she celebrated her 5th year of being cancer–free.
Elizabeth has something of a long history of cancer, having lost her mother to non-Hodgkin lymphoma just over 4 months after she was born; having been diagnosed herself with adenocarcinoma of the submandibular salivary gland, which very rarely affects children, at just 2 years old; and having had a basal cell removed from her face at 25. She has also had a long history of stomach issues. Her colon cancer was discovered when her condition worsened to the point that a CT scan became necessary.
Elizabeth has learned a lot from her experience, and is eager to share her story with other patients in the hope that she may be able to offer both guidance and reassurance.
Name: Elizabeth W.
Diagnosis:
Colon Cancer
Staging:
Stage 4
Initial Symptoms:
Irritable bowel syndrome (IBS)
Small intestinal bacterial overgrowth (SIBO)
B12 deficiency
Hypoalbuminemia
Treatments:
Surgery (removal of left side of liver and small portion on the right)
Chemotherapy (oxaliplatin and xeloda)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.
Introduction
Hi, my name is Elizabeth. I work in the TV industry.
On March 14th of 2019, I was diagnosed with stage 4 colon cancer.
After surgery and chemotherapy, I was declared NED (no evidence of disease) later that same year.
On July 1st, I will have been 5 years cancer-free.
History of Cancer
I have kind of a long history with cancer.
Ten days after I was born, my mom was diagnosed with non-Hodgkin’s lymphoma of the bowel. They gave her 2 years to live, but she made it to just 4 months after her diagnosis. Bone marrow transplants, which is what they do now, had not started yet. They actually started 2 years after she was diagnosed.
When I was 2, my dad noticed that I had a lump in my neck. I’d been born with a cyst under my tongue, so he thought that that’s what it was. It turns out that I had adenocarcinoma of the submandibular salivary gland. I believe I was the first child or one of the first children, at least, to be diagnosed with that type of cancer. It’s way more common in adults.
At 25, I had a basal cell removed from my face. So I joke that I’ve had cancer about 2 and a half times because a basal cell, it’s technically skin cancer.
Pre-diagnosis
So I always sort of had stomach issues. My sister and I, whether it was lactose intolerance or whatever, we’d get stomach aches. And very commonly for us, we would eat something and then we would almost immediately go to the bathroom. It was just something that we always did. And I didn’t really pay that much attention to it because I tested negative for celiac multiple times.
I went to a GI in my early 20s when I moved to L.A., and I tested negative for celiac twice. They gave me an irritable bowel syndrome (IBS) diagnosis, which is just a very blanket diagnosis of any sort of stomach issues.
I then started to get really bad stomach issues, later in my 20s and into my 30s. And at one point I was in Europe, my sister was coming to meet me, and I was in so much pain she had to bring me xiaxin, which is an antibiotic.
I would feel better on the antibiotic for a little bit after, and then the issues would just come back. Nothing seemed to make them go away permanently. As for my sister, she had done a round of vaccine for her stomach issues and they had just gone away.
I went and saw a GI because I was having trouble finishing going to the bathroom. I would go to the bathroom and I would feel like there was more that needed to come out, but I would have to sit and wait for a little bit for it to come out.
So the GI did an exam and he said, everything seems fine, but, I’d like to do a colonoscopy to rule out Crohn’s or colitis. And then he also did a bacterial overgrowth test.
So I got a call from my insurance that said that he was leaving the network the next week, and that I would have to find a different GI to do the colonoscopy. So I got a new referral to another GI. He looked at everything that the previous GI had done. He said, you have IBS with bacterial overgrowth because I tested positive for SIBO.
Then he wanted me to take an antibiotic every night for 6 months to a year. And what he said to me after that was, this is what I think is wrong with you, and I’m never wrong. I didn’t like that answer.
My work in TV keeps me filming about 8 months a year. Every hiatus in the spring, I would go see another doctor. So I got another referral to another GI. I went and met with her in Santa Monica and she said, I don’t think it’s Crohn’s or colitis, but we can rule it out by doing a colonoscopy. But she also said, well, you aren’t having symptoms right now, so let’s just wait until your symptoms come back. And it was my first time as an adult that I went an entire year without any symptoms.
That all changed on March 1, 2019, when I was at work. I will never forget it.
It was a Friday evening. I was standing in front of the house where we were going to film, and I felt like I had pulled a muscle in my side. And I remember saying to one of my friends at work, like, it feels weird because I didn’t do anything that would have caused that feeling. And from that day onwards, I started getting shooting pains from my left side towards my middle, and they would become more frequent and more painful as the weeks went on.
On March 11th, I was at work and I started to just feel ill as well. I took the next day off and went to see another GI. He did all these different tests, and he noticed that my blood work from January, from my physical, revealed that I had very low B12 and very low albumin, and nobody had followed up to do additional testing.
The GI said, you know, we’re just going to run some tests. I would like to do a colonoscopy. You probably have a mild Crohn’s and colitis. So the same thing that everyone else sort of thought was or wasn’t what I had.
Okay, well, I have a month left of work. Is it possible to do it when that’s when that’s done? And he said, oh yeah, of course, no problem. I said, as long as it’s not life threatening. He said, oh no, nothing like that.
The next day, I woke up in the most pain I’d ever been in—I was in so much pain that I could not stand up straight—and I drove 35 miles to Santa Clarita to go to work. But everyone at work was like, you have to go home.
My doctor called me and he said the inflammation levels in my blood were so high. He said, you have to have a colonoscopy on Friday (this was a Wednesday). I was talking to my parents and my dad, who’s a pediatrician, decided he was going to fly down because of how much pain I was in.
My GI initially had told me to start taking fiber on that Tuesday. And then on Wednesday, when he called me, he said, don’t take fiber, switch to Miralax instead. My first bowel movement post-Miralax on that Thursday was covered in blood, and it was the first time I had ever had blood in my stool.
I reached out to him and he said, that’s perfectly normal. It’s what we would expect because of the levels of inflammation in your blood. I wouldn’t worry about it, he said.
Discovery and Diagnosis
However, my GI and my dad had spoken on the phone and they decided they were going to send me for a CT test. So that Thursday, March 14th, I drove to UCLA to have my CT exam. My dad was flying in and was going to meet me at UCLA.
I had the CT exam, and when I was done, my dad showed up. I was still in pain and extremely nauseous. We drove to Rite Aid to buy something, but I was feeling so bad that I couldn’t leave the car; my dad had to run in.
When I got home I immediately ran into the bathroom and started throwing up. But in the middle of all that, my dad walked in with my cellphone on speakerphone because my doctor had called back.
The doctor says, I’m so sorry, but you have a tumor in your colon and spots on your liver and you have to go to the hospital.
And my dad whispered, it’s happening all over again. Because my mom had non-Hodgkin’s lymphoma of the bowel. It wasn’t connected through cancer, but it was in roughly the same location.
And then my doctor called me back, he was able to get me a bed. Just go to UCLA, he said. I packed and we drove over.
We arrived at UCLA and got settled. The next morning, they brought me in for the colonoscopy.
If you have a blockage in your colon, no matter what stage you’re at, if it’s bad enough, they’ll do an emergency surgery and just take out that part of the colon right away. They were successful and were able to place a stent.
The next day I met Dr. Agopian, who ended up being my liver surgeon. He had a refreshingly different approach from the others I had spoken with. He walked into my room by himself, sat down at the screen, and turned it to face me.
Dr. Agopian pulled up my scan and he said, you have three spots on the left side of your liver and one on the right.
Dr. Agopian said, I want to take out the whole left side of your liver and this spot on the right, it’s right on the edge. We’ll just cut it out. And then he looked at me and he said, let’s cure this thing. And he added, well, we’ll do a few rounds of chemo and then if it’s the same or better, you can have surgery.
Reaction to My Colon Cancer Diagnosis
So after I was first told I had colon cancer and spots on my liver, I remember sitting on the floor and there were a few first thoughts.
My friend Stacy was diagnosed with breast cancer when she was pregnant with twins, and she passed away before they turned two. At their first birthday, she had said to me that she had bone spots. I remember calling my dad and asking him what that meant. My dad had said to me that any time cancer leaves its origin, it’s only a matter of time.
So when he said I had liver spots, my first thought was, oh, I’m going to die. And then my dad left to go call my stepmom. I sat on the floor and my first thought was, this is so stupid. I just was like, I can’t. It just didn’t make any sense.
And then on the way to UCLA, I don’t remember if we really said anything. I remember having conversations with myself, and I was just sort of going through all of the things that I’d done. I’ve traveled a lot. I’ve been to all seven continents, like you’ve lived, you’ve had a really good life.
And we get to UCLA and headed to my room. The woman said that they were going to do a biopsy and colonoscopy in the morning, and so they were going to do 3 tap water enemas that night. My dad went to find lodgings for the night and my stepmom was going to fly in the next morning. So I was all alone in the room.
I just remember sitting in that hospital room and basically knowing already that I had stage 4 colon cancer. It’s a very strange thing because no one had confirmed anything yet and I didn’t have a biopsy, but I already knew.
For a period of time, I was explaining what was going on, but the minute that I would have to say I have stage 4 colon cancer, I would just lose it. And so I didn’t tell. A few people, like those from the show that I was working on, showed up in ways that they didn’t have to. They had always been extremely loving and caring towards me.
But Dr. Agopian made a real difference. He was the first person that sat down and explained things in a way that was practical and straightforward. Okay, here’s plan A, here’s plan B, here’s plan C. These are the options. These are the things that we can do. And I felt so disconnected from everything that was going on until this man walked down and just said, this is what’s happening. This is what we’re planning on doing.
He for me was like a light, like a beacon of hope that nobody else presented. And I held on to that so tightly because nobody was giving me anything else.
Treatment
I was in the hospital from Thursday to Sunday. I only stayed in the hospital as long as I did because I kept getting fevers at night. They couldn’t find any infections. They couldn’t figure out what my fever was caused by, either; there wasn’t anything else going on. I basically had to stay until I stopped getting fever.
And then I got better and was released. My parents initially told me to come to Northern California, where they live, because they knew the head of oncology at UCSF and they’re like, you’ll come up and do this at home. But I said, thanks but no, I’m not leaving my house. If I go home to do this, my entire existence revolves around me being sick, away from all of my things and my cat and so on.
So they gave me the names of a few different oncologists and reached out to their friend at UCSF for referrals to UCLA as well. They came back with two of the same three names. And after a couple of initial calls I finally got to talk to an oncologist, and my sister and parents flew down to meet him.
Chemotherapy
I had my first round of chemo on April 2019 and ended in November 2019. I took oxaliplatin and xeloda.
After that, I did a scan. I had been told, if my scans were good, we would cancel the chemo appointment. If they’re bad, then I’d need to stay and do another round of chemo.
And I had asked my doctor because the liver surgeon had said it just has to be the same or better. And I said, how often is it the same or better? He said 75%. I think it was 70 or 75% are the same or better on oxaliplatin and xeloda after three rounds. But I was taken aback when I got a phone call and was told that my appointment had been cancelled, my doctor was taking a leave of absence, and I had to find another doctor while he was gone.
So I paged my nurse practitioner, and I said, well, I want my scan results. And she said, oh, your colon cancer tumor, you can’t even really see it anymore. And all your spots shrank.
I then called the liver surgeon’s office, Dr. Agopian’s office, and was told that he wouldn’t be back until Wednesday. But then I got a phone call back and was told that I was going to have surgery and that I needed to meet Dr. Agopian and my colon surgeon on Friday.
I immediately called my friend who lived in Hawaii, and I scheduled a flight to Hawaii on Saturday, right after the meeting with the doctors, because I wanted to have a bikini vacation before they cut into my stomach.
Surgery
So during the Friday meeting, we scheduled my surgery for July 1st of 2019.
There was an initial concern about the date; my dad went, oh, it’s July 1st. It’s the day in every hospital where everybody moves up a level. A lot of people don’t have surgery on July 1st. But it turns out that none of the doctors assigned to me would be affected, which was great.
I underwent the surgery as planned on July 1, 2019.
Remission
One or two weeks later, I went in for my follow up appointment with Dr. Agopian. He came in and he said, is anyone giving you your pathology yet? I said, no.
And he said, the cancer cells in your tumors, they’re all dead. At that point I’d had 3 rounds of chemo out of the 8 that I was supposed to have, and I just sort of went, oh, okay.
And then a day later, I came in to see my colon cancer surgeon and he walked in and goes, Agopian stole my thunder. And they were like so excited. But again, my oncologist was gone and so I didn’t quite have that conversation.
I went to a new oncologist and he’s going through my file like he hadn’t even looked at it yet. And he was just like, oh, this is good, this is good.
And then he goes, you’re in remission. I called my sister after and I was like, didn’t sink in and it didn’t feel real. And then finally when my oncologist came back and said, you know, they say NED, which is no evidence of disease.
I finished my colon cancer treatment in November of 2019. I dropped the oxaliplatin because I had a allergic reaction on round 6 and broke out into hives. So I just did the xeloda for my last few rounds.
I got scanned every 3 months, and then it went to 4 months. And on July 1st when I go in to see my oncologist, for my 5 year scans, I then get a say in how long we’ll have a discussion of how often we’re going to do the scans versus the Signatera, which is the blood test where they can test for tumor markers in your blood.
… you will not always feel [bad] because in the first round you don’t know when it’s going to end and you feel like it’s never going to end.
Lessons Elizabeth would like to share
Radical Hope
During the course of my treatment, one of her friends had said it was really interesting because she was having conversations with one of her friends who was a doctor, and what the friend had said to her was, there’s no reason not to have radical hope.
So radical hope sort of became my thing.
I’m not religious. I don’t believe in God. But that being said, there is still a sense of whatever happens, happens, and what’s meant to be will happen. So that always gets very complicated for me.
The Possibility of Death
I was just very practical about it. Like most people don’t survive a stage 4 diagnosis. The statistic I think is, 12 or 14% of stage 4 colon cancer patients are alive 5 years after their diagnosis.
If you are a stage 4 cancer patient and you are friends with other stage 4 cancer patients, most of them are going to die. That was a really hard thing to deal with. And then I also struggled a lot because people kept saying things like, you’re the strongest person I know. If anyone can beat it, you can. And every time someone would say that to me, I’d be like, oh, I’m definitely dying.
It’s such a weird pressure because what if I die? Then have I let all these people down? Was I not as strong as they thought I was?
I’m not a warrior. It’s not a battle. It’s a disease. I didn’t sign up for this. I’m not a soldier. I think Norm McDonald said, um, when you die, the cancer dies with you.
I always appreciated that because I think that people mean well, again. But, like, I’m not a warrior. I’m not out fighting. I’m on my couch watching Parks and Recreation, trying not to throw up.
Putting up a strong front
It’s this idea that you have to be this strong front to everybody. And it’s like, no, we’re tired.
Like we’re tired and we’re cranky and we’re annoyed and like, I was so hot and people, very lovely people kept sending me blankets and I was like, I just, I’m so hot. And one of the main side effects of oxaliplatin is that you can’t eat, drink or touch anything cold. I had a very high cold sensitivity, so I was always having to drink hot drinks, hot chocolate, hot apple cider, hot water and lemon.
The last thing that I wanted was to be wrapped up in a blanket. But I really appreciated everybody that sent them to me.
If I am miserable on top of how terrible it is, what’s the point then? So I’m going to try to have the best time, like you’re going to try to make the best out of a bad situation. And it’s hard to do.
But I had incredible people that stepped up and came and took care of me, and there was so much good that I got to experience.
Reaching out, giving back
I recently donated my hair. I did it when I was diagnosed, also because with colon cancer, with the main chemo, you don’t lose your hair. But I was so overwhelmed with all of the love and the gifts and the things that were coming to me. I donated my hair after my first round of chemo, and then just 5 years later, I donated it again.
Any time that I felt like I could give back in any way, that was really important.
People are nice to you because you have cancer. Everyone seemed to go out of their way to offer things. And I think that’s also the other thing, it was really difficult for me to ask for specific things.
So everybody stopped checking in on me and it was like, oh, because everyone said, I don’t want to bother you. And I just would say, it’s not about like telling someone you’re thinking of them or, hey, I’m going to stop by with, you know, X, Y, or Z. I think those are sort of things that are super helpful.
And for me to be able to share as a stage 4 patient, to give hope to other stage 4 patients, that there’s someone in front of them who is going through it, who went through it somewhat recently and is okay. And that can be a little bit of pressure of like, I get nervous that if I do have a recurrence, I’m somehow letting everybody down.
It feels like a very strange space to live in. But again, things like this. I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.
I think that everyone’s experiences are going to be different. The fact that colon cancer is now the number 1 cancer death for men 20 to 40, and it’s the number 1 cancer death for men and women combined 20 to 40. And we still aren’t doing colonoscopies for people. I think that that’s the big thing that needs to be addressed.
Access to colonoscopies, access to Cologuard, access to things that are clearly needed because the number of people that reach out to me, women in their 20s on Tech Talk who will message me and say, I made my doctor do a colonoscopy, they said they weren’t going to find anything. They did a colonoscopy. They removed precancerous polyps and they said, you saved my life. And I think that the price of a colonoscopy, the access to health care, all of these things, it’s going to cause so much more issues because the number is rising. It’s something environmental. My geneticist says they don’t know what it is.
And for people that were born in the 80s and 90s, I just think that access to colonoscopies needs to be a bigger thing on everybody’s mind. I will also say that I did call my doctor’s office of the gentleman who said, this is what I think is wrong with you, and I’m never wrong. I spoke to the office manager because I wanted to make sure that he knew that he was wrong.
Mental health struggles
The big thing that people don’t sort of warn you about is that everyone’s around you and it’s very structured. And then once you finish, you don’t have that anymore. And that to me is when my mental health tanked.
I really struggled as my friends were starting to pass away from treatment, being a former stage 4 cancer patient who doesn’t have cancer any longer. But maybe it’s Schrodinger’s cancer, right? You don’t know until the day you have the test and the day you have the test. You know that that day you didn’t have cancer. That can be very difficult.
I started to have panic attacks and had to stop working on the show that I was working on because my mental health got so bad. Actually, I had a panic attack so bad I couldn’t drive for about six weeks. I didn’t think I’d be able to work again.
My primary care doctor at the time wouldn’t prescribe me anti-anxiety meds. He wanted me to rule out anything medical. So I went through endocrinology, ENT, cardiology, neurology. I had a brain MRI to make sure I didn’t have cancer in my brain. I saw every doctor under the sun. But the problem is, they were all specialty. They come in, they do their test, and if it’s not them, they just leave. So I was just constantly feeling abandoned by all of my doctors and my primary care doctors.
And then finally I made it through all the different doctors. I was feeling suicidal and was really struggling. It was really upsetting that no one was sort of listening or paying attention and feeling really guilty because I survived. I couldn’t live the way that I was feeling, the way that my brain felt. I couldn’t sustain that and I felt like nobody was paying attention. To anything other than their specialized thing. And so I had guilt on top of everything else. My brain just felt like it was fighting me all the time.
And the mental health aspect of chemo as well, which my friend Megan called black cloud days when you were having a bad day. I was talking to someone and I kept saying, it’s okay to have a black cloud day. And her husband kept saying, but we’re always going to look for the sun. And I was like, but you have to allow yourself to sit in what feels bad sometimes.
The better we felt, the worse we felt mentally during our cycles, because the better you felt physically, the closer you were to going back and having another round. You physically felt better, you were able to do more things, but you knew that the better you felt, the worse you were about to feel. And so I think that the structure of how you can help somebody who’s going through chemo and everybody is going to need something different.
Resources that can help
I think that whatever little thing you can hang on to and help you find your people, you should explore.
ColonTown is a great resource on Facebook. And TikTok has become another big thing for me. I created a TikTok account to spread awareness for colon cancer and young people, but also the idea of struggling with mental health after your cancer finishes because nobody talks about it. There isn’t as much support for that. There’s support when you’re going through it.
UCLA has free psychiatry, psychology services. You can get a therapist, and I had a great one. Not enough attention is paid to your mental state after your treatments are finished. And so that’s always been a really big thing for me, which is, people say, oh, but you’re better now. And it’s like, you’re never fully better. It never goes away.
I should also say that I craved oranges, and I learned later that oranges are an anti-nausea food, and pregnant women drink them and people on boats when they’re getting seasick.
Solutions
I had a meeting with a psychiatrist who I just saw to prescribe me meds that I should have been given six weeks earlier. And within two weeks it completely changed everything in my life. And I also now have a new primary care doctor who is lovely.
I’m wearing my Chadwick Boseman T shirt. It’s all of the lost potential of a human being that colon cancer took away. Like colon cancer took away massive potential not only from Chadwick himself, but from every person that that passes away.
And I think that the struggle of having cancer, of dealing with cancer, and then dealing with its aftermath is something that is really important, and I would love to figure out a better way to sort of platform all of that.
I’m going on a beach vacation with my sister and her friends, next week to celebrate five years, I have my scans on the 28th.
I’ll meet with my oncologist on the first, and it all seems like a fever dream, because when you first get diagnosed and when you’re in it, it feels so far away.
“Snowboarding”
When I went in for my first round of chemo, I sat next to a man who was a couple years older than me. His colon cancer had spread to his esophagus. And I was so scared and so unsure of what was coming and what to expect. And he was on his 5th round.
He sat there and walked me through everything that I could expect. He talked about the cold symptom called broken glass syndrome. If you eat or drink anything, even walking too quickly, the air that you inhale is too cold and it can set off different things. He just talked me through everything in such a gentle, sweet way.
I have shared with every single person that I have talked to about this because a lot of people reach out on TikTok or on Instagram, I have many conversations with strangers who have just been diagnosed, or have friends or family that have just been diagnosed, and I walk them through everything like he did for me.
What he said was, on my good weeks, I go snowboarding. And so in my first round when I was having my worst day and I felt like I couldn’t do anything and I couldn’t move, and I felt so terrible in my head, I just kept repeating, he went snowboarding.
He did not go snowboarding feeling like this. So you will not always feel like this because in the first round you don’t know when it’s going to end and you feel like it’s never going to end. And so I just kept saying in my head, he went snowboarding. And that to me was the hope that I would get better.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Grace hails from California and is a proud mother to her 3 children. She was diagnosed with acute myeloid leukemia (AML) in 2022. Her cancer was revealed by a blood test requested by her doctor after she suffered a headache that persisted for a week.
Grace’s diagnosis blindsided her and filled her with anger and confusion, as she has lived an active lifestyle and has stayed away from tobacco, alcohol, and recreational drugs. She admits, though, that her diet may have contained too many processed foods, and suspects that this may have contributed to her cancer.
Grace was completely unfamiliar with leukemia and had to learn all about it from her doctors. She also had to steel herself for all her tests and treatments, including her first bone marrow biopsy of a total of 6, which she describes as being more painful even than childbirth.
Grace ended up taking 6 chemotherapy treatments for her AML. She also had to undergo a stem cell transplant—and was lucky enough to find a compatible donor who could help.
Grace’s cancer is now in remission. To try and make sure she stays healthy from now on, she has resolved to buy and consume only organic products. Moreover, her brush with cancer has made her realize that she needs to stop taking things in her life for granted, from her family to “little things” such as hummingbirds and flowers.
Grace shares her story with us today to help others realize the importance of living a healthy lifestyle as well as having the right attitude and taking time to truly appreciate life.
Name: Grace A.
Diagnosis:
Acute myeloid leukemia (AML)
Initial Symptoms:
Headache that lasted 1 week
Treatment:
Chemotherapy
Stem cell transplant
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Brad’s Smoldering High Risk Multiple Myeloma Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
After having been diagnosed with smoldering myeloma in December 2019 and smoldering multiple myeloma at a second-opinion consultation just a few months afterwards, Brad was diagnosed with smoldering high risk multiple myeloma in October 2022–with a 50% chance of it becoming active within 2 years. Constant bone pain and worsening lab results as of April 2024 make it likely that he will need to start treatment soon.
Although the last few years of Brad’s life have been challenging, to say the least, he has taken refuge in his faith, derives strength and comfort from his relationship with his wife–a breast cancer survivor–and also possesses a can-do attitude that stands him in good stead. By sharing his story with us, he helps inspire and offers advice to others facing the same situation.
Name: Brad H.
Diagnosis:
Smoldering high risk multiple myeloma
Initial Symptoms:
Abnormal kidney function (stage 2 kidney disease)
Mild anemia
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
… the most important thing that you can do as a cancer patient is to live through your cancer.
Introduction
Hi, I’m Brad. I grew up in the Twin Cities area of Minneapolis.
I wear many hats. I work in the IT telecom space. I’m a professional musician. I’ve taught all my life. And I’m also a woodworker and love to golf, but I don’t do that much anymore because of my back.
I started my myeloma journey as an actual monoclonal gammopathy of undetermined significance (MGUS) person. And my current diagnosis is that of a smoldering high risk multiple myeloma.
Looking to start treatment sometime this year, according to the health professionals.
Discovery
My smoldering high-risk multiple myeloma story starts in July 2016. My primary care physician noticed that my kidney function was starting to change and that also we were starting to see my hemoglobin going down.
Now, as a type two diabetic, I’m fully aware of hemoglobin A1C, but I hadn’t really thought much about the rest. Red blood cell and hemoglobin and all of those.
So he noticed that it was getting dangerously low. So he started to say, well, why is that? And from that standpoint, we started to go through the process of a colonoscopy, let’s do an endoscopy, let’s find out if you’re bleeding somewhere. And he went through this and did the watchful waiting.
And essentially I had no abnormal feelings. I wasn’t feeling any nauseousness or dizziness. I was, you know, just kind of surprised that that was the case.
And he finally says, well, I’ve done everything I can think of. I guess we’ll send you to check with a rheumatologist. And I thought, okay, you know, having a compromised immune system, I guess that could be a possibility.
So I remember going in after the bloodwork to the rheumatologist, and the rheumatologist looked at me and said, why are you here? You have no reason to be here. You have no rheumatological issues. Okay. Thank you very much. It was one of the shorter appointments I’ve ever had in my life.
And so I reported that back to my primary care. And he says, well, you only have one more option. And so I was off to the hematologist. And in the process of the hematologist, you know, you have to go through normal blood work. Then you have to do your imaging because they wanted to do a full skeletal survey. Do all the blood work, do all those things, and then you show up for your follow up.
And so the doc says, so you have some abnormal proteins in your urine. And also we’re finding this thing called MGUS.
Diagnoses and progression
MGUS
I’m thinking, okay, what does that truly mean?
After I left, I find out that this is a non-cancerous precursor. But there’s a really bad one down the line called multiple myeloma. And your survival rate, according to those years, 2016, 2017, was not particularly good because the treatments were not strong enough to really knock it out. So that was my initial diagnosis.
Then the bone surveys show some minor lesions, lytic lesions, osteolytic lesions. And the top of my head, I remember that it was tender to the touch. But hey, you work out in the shop doing woodworking. Who knows if you hit your head doing whatever, or if you were bonked on your head by your wife while you’re asleep.
My doctor, he gets this diagnosis and he’s a little concerned because that is a step forward in your prognosis and in your diagnosis. So he goes to his buddy, another radiologist who looks at it, and they go, it really doesn’t look like anything. And I’m thinking, okay, well, this is good.
But I’ll tell you what, because your numbers keep on increasing. Maybe we should go ahead and do a bone marrow biopsy. And your kidney function is also getting a little bad because I’d been to a nephrologist, a kidney specialist, and he diagnosed me with stage two of kidney disease. Okay, let’s go have a kidney biopsy and we’ll do the bone marrow biopsy as well.
I chose to take sedation because it’s really, really painful. And you have to be sedated when you’re doing a kidney biopsy.
So December comes of 2019, and I remember taking my wife with me because I was concerned about this particular diagnosis. And we went in there and the doctor tells me that I have progressed. Now the progression percentages from MGUS to anything else is 1% a year. It’s barely been a year for me–and I’m already progressing, so I’m already over performing the wrong way.
Smoldering myeloma
And so here I was with a smoldering myeloma, which is again asymptomatic. Non-active myeloma.
Don’t worry about it. You know your chance of progression is 10% a year over five years. Okay, that sounds good. But the one important thing that everyone that has this particular stage diagnosis. I know you like your oncologist locally. But you need to get to a myeloma specialist. And being that I live about 250 miles away from Houston, I had two choices.
My wife is a breast cancer survivor, and she did her work at Cancer Treatment Centers of America up in Tulsa. So I wanted a second opinion. I wanted to make sure that we were all aligned on what my next steps are supposed to be.
Smoldering multiple myeloma Kappa
So I checked out Cancer Treatment Centers of America. I talked to MD Anderson in Houston, and I chose to go to MD Anderson because they’re a research hospital.
I happened to be scheduled with the head of the myeloma and lymphoma clinic at MD Anderson, and that was a great comfort to me. I remember making that appointment and everyone knows where this is going.
I’m now having this conversation with Anderson, and they want all my labs and they want all these other things.
So my appointment was in April of 2020, which again should remind everybody of something. So here I am waiting for all of this material to get to MD Anderson so we can go down and have a conversation. And there could be a consult. And so the date arrives and it’s toward the middle of the month. And I’d already made my reservations in Houston, and I’m driving down to Houston.
We’d already had closures, people threatening closures, and things were still relatively open so I could stop at gas stations and I could get gas if I needed to. But I came fully prepared to kind of be socked in and not have much opportunity. So I’m about 70 miles from Houston. My hotel calls–“We’re closing down.”
So I’m trying to find out where I might be able to stay. It’s a ghost town. There wasn’t anybody around. And so I put my stuff away. So the next morning I go in and meet my myeloma specialist,
You have to go through the entire intake process and they weigh you and they do all of those things. And I remember that the person, not the cancer doctor, but it was her assistant who’s also a doctor, came in and she explained what I have. And so the doctor came in, we talked about it, and she says, okay, here are your jugs. We need for you to do a 24 hour urine, and it needs you to schedule a PET scan tomorrow.
So I went through that process, did the PET scan. And so it was confirmed. She sent me a note. And so now it was watchful waiting.
Watchful waiting
So watchful waiting means that essentially, just like the words state, you are sitting here and you’re having blood work done at a regular time, and they’re looking for markers. They’re looking for changes.
Now, the thing is, nobody will tell you what those changes are. They won’t tell you what your light chains or what your ratio is or anything like that.
But watchful waiting means that you go to doctors offices 4 to 6 months, and I would choose to go every 6 months with my local doctor and every 6 months with MD Anderson. And I was able to schedule those. So every 3 months I was having some kind of bloodwork because I was not going to be the guy like on a lot of these stories. I didn’t have any idea. And all of a sudden I found myself on the floor with back problems.
It was really tough. And even going to get labs done, we decided that we would go every 6 months. So I spaced it out every 3 months. So it was 6 months local, 6 months down at MD Anderson.
So every 3 months I was having labs done. Plus I’d have my diabetic labs done. So I was doing a lot of blood work. But I decided that MD Anderson was going to be the decision maker on my care plan.
I did all of my major bloodwork and 24 hour urine collection with Anderson, because I felt that you have a nephrologist on staff. You have everybody that you need on staff.
And so MD Anderson stated that my treatment plan was going to be–come down, visit us. And during Covid we can go ahead and do virtual visits if you would like.
And so that worked out well. I would go down for my labs. And my drive for labs was to get up early in the morning, drive down to The Woodlands, which is a northern suburb of Houston. Do my labs turn around and come back. That allowed me to continue to work.
And so I could have calls while I was driving to work or driving down there and back. Managed projects, do whatever I needed to do. And then I would have a follow up with the care team and I would visit my local oncologist live.
Complications due to COVID
Covid provided unique opportunities for the United States. And it became obvious that people were supposed to be testing for Covid. They wanted you to take a shot.
I’m thinking to myself, I’m not going to take this. I’m going to take my chance. I don’t believe that this has been tested well enough with people like me. I know a lot of myeloma patients were required to take it because they had compromised immune systems. I understand that I have friends with cancer. They had to do the same thing, but they also say it was the worst decision that they ever made.
This is not a discussion about the efficacy or not of the vaccine. I’m stating that I made a personal decision and I almost paid for it with my job. Fortunately, I was able to provide a Christian reason that I don’t believe in. this particular shot and none of my doctors would give me a medical reason not to take it.
So I chose not to do it, and I was able to get dispensation.
So watchful waiting is like having an IED strapped to your body with a maniacal doctor. Standing feet from you. With a trigger ready to push the button.
I’m being hyperbolic about this, but think about what you’re looking at in those days. The potential that you will live five years was very strong. And if your genetics came back bad and they weren’t able to treat you because of those things, then you’re talking about some serious concerns.
I had two children that weren’t married. They were out of college, but I wanted to see them get married. I wanted my daughter to have grandchildren. I was hoping that my son would marry someone that wanted to have grandchildren as well.
So we come into 2022. And ’22 was pretty significant for me because I was starting to experience pain. And, you know, you tell people that you’re experiencing pain and they will always find a way to dismiss it. Gee, you’re almost 60, Brad.
Of course you’re going to have pain. And so you’re feeling really, you know, inadequate about this because you know, you don’t want to be the nervous Nelly and you don’t want to do all these things, especially someone who’s been through cancer with my wife. You know, she’s looking at you because the doctors don’t say anything.
So I found myself getting more and more concerned. I left the company that tried to fire me because of Covid, and I went to another company. The stress was immense.
I started the first portion of June, and by July I had Covid and it was difficult. But even though I have high morbidity concerns, I just took the stuff that he told me to take. It wasn’t fun, but I made it through and I was really, really tired.
And then I went for labs, and MD Anderson says if you’ve had Covid in the past three weeks, I’m not letting you in. I came down already with my 24 hour in hand, and I’m trying to find my way. I don’t want to lie to somebody when they ask me. Going through that? Yeah, it was on the 10th of July or whatever it was. Well, that hasn’t been three weeks. I’m not going home. I’m not I’m not going to do it.
So they let me in and I got my blood work done. And the numbers were a lot higher than a spike up. And so there was great concern associated with that.
Smoldering high risk multiple myeloma
Had more testing, had another bone marrow biopsy. This time I did a bone marrow biopsy without any sedation. And the doctor says, oh, you have a high pain tolerance.
And then it was time to learn about cytogenetics.
So I did my research looking at all of those things and those markers. And that’s when my doctor in November of 22 told me that I have high risk smoldering multiple myeloma. And that I have a 50% chance of being in treatment in the next two years.
I’m thinking, bring it on. Let’s just get this thing done, because I am so tired of watchfully waiting and having stress because of it.
Now in 2024, my labs continue to worsen, and the pain is now consistent–hip, pelvis, lumbar pain. You sit and you’re driving along and you feel pain in your lower back and you can feel the pressure.
Today, since my pain is now consistent, I’m sure that my smoldering high risk multiple myeloma will be there when I see my doctor next.
I am a person who prepares because that’s what I do.
I’m a risk mitigator, that’s how we handle projects.
So to mitigate my risk, I’m going to make sure that I understand what’s in front of me.
Reaction to the diagnosis
Getting cavalier
So you’re sitting there with all of these things weighing on you. Then you get cavalier.
You know, the stages of grief are that, first of all, you start to bargain and you’re saying, well, God, you know, the percentages are low, so you’re just going to keep me going here and I’m going to make it pass by 5 years and everything’s going to be great. And then, you know, the reality starts to hit as your numbers increase each time.
Each time they want to tell you again what they’re looking for. They just say that you’re stable. But when you see your numbers increase, that’s not stable to a human being, to a doctor, there is no statistical abnormality in the percentage increase because they’re looking at a number that they won’t tell you and is higher than what you have.
So emotionally it starts to drain on you. And every time, every 3 months you are going to the doctor, you get your labs done. And then you sit and you watch the labs come in and you see, oh, you have a low blood count or this is low or this is high. And so, you know, you’re doing all the things that you’re not supposed to do.
But I am a person who prepares because that’s what I do. I’m a risk mitigator, that’s how we handle projects. So to mitigate my risk, I’m going to make sure that I understand what’s in front of me.
So I had the cavalier attitude to this smoldering high risk multiple myeloma. Bring it on. I’ll do my chemo and I’ll just do this stem cell transplant. It’s going to be nothing. I am going to be cool. We’re going to have this happen.
Depression
Over time, the progression started to weigh on me more and more. Not only did I have the pressures of work, but I had this pressure and I started to go into a pretty deep depression.
I didn’t even realize I was depressed, but the depression came with such quickness and force that I found myself having trouble being able to do my job.
I almost got fired because of that.
Finding solace in prayer
So at my church, we have small groups, and I went to 1. It was the first time we were having the small group and I met some people that I didn’t know.
So I was explaining that I was getting ready to go down for some more testing and things, and I was describing that I had a smoldering high risk multiple myeloma.
And the minute I said those words, I lost it and I burst out in tears and I was inconsolable for a good five minutes as everything let out.
So those of you that have been through some type of traumatic experience, whether it’s the loss of a spouse or a child or whatever, this is the time when the acceptance happened.
And that’s the time I still get emotional. That was the time that I said, yeah, I can do this, but you know, God, you got this. And whatever your timing is for me. If this is what is to be, then I’m ready to walk this with you.
So we went around and prayed and my wife prayed for me and that was a healing thing for me.
Has God been faithful? He has been entirely faithful. Once I had that episode with my church group, it wasn’t a cavalier attitude that I had anymore. It was a peace about me. And God has nurtured that peace, despite the fact that I’ve had a lot of pain that comes.
But the problem with pain when you’re smoldering myeloma and you’re watchful waiting is your pain comes and it usually goes away about the time that it’s time to go see the doctor. Well, tell me, have you had pain? Well, yeah, about a month and a half ago. And they go, well, blah blah blah. They’re not really thinking about that because it’s not now.
… living through this diagnosis and the treatment that follows is how you get out the other side, and how you can also be part of the patient story.
Lessons Brad wants to share
So the most important thing that you can do as a cancer patient is to live through your cancer.
I like to write. In 2023, I started a blog called Living through Cancer and through that in 2021 I published a fiction or historical fiction book. And so I felt that writing and talking about my smoldering high risk multiple myeloma journey would be a helpful thing to others.
So you need to find a way for an outlet. You need to find people who are going to support you. And when it seems like your mind is controlling your body, telling you that you have pain that people don’t see, you need to not allow people to influence how you’re feeling. Your mind can do a perfectly fine job of making you feel a certain way when you’re really not. So you need to check yourself. You need to be aware of your body.
There are a lot of resources, good resources that are out there, on smoldering high risk multiple myeloma and other related concerns. Knowledge is power. You must have proper knowledge.
Anybody can research this information and maybe you want to do it with your spouse, one of your siblings. It’s a lot of people who need to be involved in your care. Not only your care team at your oncologist or your specialist office.
And finally, you have to make sure that if you’re in a watchful waiting or some type of a precancerous period, you need to make sure if you’re at all concerned that you don’t have the right diagnosis, get to a specialist. Your local oncologist is a great resource, but sometimes, especially with something that is as rare as blood cancer is, you need to have somebody that researches it.
And find your place and make peace with the fact that this is something that is treatable. Most cancers today are treatable. They’re not a death sentence. There are only a few that we won’t mention, but they’re treatable, and you can have a quality of life.
But living through this diagnosis and the treatment that follows is how you get out the other side, and how you can also be part of the patient story.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Steve, a 51-year-old resident of Ontario, Canada, was diagnosed with Stage 4 colorectal cancer 3 years ago, and he shares his story with us.
Steve’s diagnosis frightened and angered him. He had been suffering the symptoms of colorectal cancer for years before diagnosis, but they were shrugged off as food sensitivities. When the tumor in his colon was finally discovered, it was so large that his doctors could not get the scope past it to perform the colonoscopy. Moreover, the doctors also found 23 metastatic tumors on his liver. He was told that based on stage 4 colon cancer survival rates, he would likely live for just 3 more years. (hint, that was 3 years ago)
Instead of succumbing to his initial anger and bitterness, Steve chose to fight. He decided that he didn’t want to be remembered as “the angry guy”—and the realization that if he didn’t fight, his cancer would take him away from his family, was all the motivation he needed to do so. He was also determined to model resiliency for his family, especially his sons.
Steve immediately underwent surgery to deal with his blocked bowel, and ended up having a foot of his colon removed along with the primary tumor. He then had to recover for a few weeks before he could start with Folfiri chemotherapy. He also took the antibody therapy medicine panitumumab along with the chemotherapy. Steve ended up taking 27 rounds of chemotherapy, with some breaks, over the succeeding 3 years.
Steve’s cancer journey was far from easy. For one, he had to endure significant side effects from the panitumumab, including unsightly bleeding rashes that covered almost his entire body. But he continued to fight so he could stay with his family. Moreover, he also discovered that he could “fight cancer in the streets” and help other cancer patients, too, and so he got involved with fundraising campaigns for his local hospital foundation and regional cancer center. He also started serving as a volunteer cancer coach at CCRAN, the Colorectal Cancer Resource and Action Network.
After 3 years of chemotherapy and a liver transplant, at his last checkup, Steve’s doctors were unable to find any evidence of his cancer.
Steve shares his story with us to grow awareness of the risks of cancer, especially colorectal cancer, and to encourage other cancer patients to remain positive and continue fighting, no matter how severe or hopeless their situations may seem.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Holly was only 25 when she was diagnosed with primary myelofibrosis.
Holly’s diagnosis was only one of a series of sad and traumatic occurrences at that particular time in her life. She had earlier lost her unborn daughter at 32 weeks due to a blood clot that passed through her placenta, and had to be placed in intensive care afterwards due to the discovery of more blood clots elsewhere in her body. Two weeks afterwards, she experienced a seizure and thrombosis stroke.
Over the succeeding year, Holly increasingly experienced symptoms that led to her undergoing a bone marrow biopsy, which revealed her cancer. What’s more, she discovered that her cancer might actually have had something to do with her daughter’s passing.
Holly continues to grieve her loss, but her life has begun to take a turn for the better. Her treatments have been effective—and she is now expecting another little girl.
Holly’s story is a testament to her resilience, the inner strength she gained, and her ability to glimpse the blessings in her life behind all her negative experiences. She shares her story with us today to help others who may find themselves in similar situations.
In addition to Holly’s narrative, The Patient Story offers a diverse collection of stories about myelofibrosis. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Holly S.
Diagnosis:
Primary myelofibrosis
Initial Symptoms:
Severe fatigue
Throbbing pain in left calf
Significant weight loss
Itching and rashes
Bruising
Shortness of breath
Treatment:
Oral chemotherapy: hydroxyurea
Immunotherapy injections: peginterferon
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I feel like I can overcome anything as long as I just remain positive.
Introduction
My name is Holly. I’m from Invercargill. It’s a small city at the bottom of New Zealand.
I am a single mum to a boy called Ambrose, who is five, turning six in October.
I was recently diagnosed with primary myelofibrosis in September of 2023.
And, yeah, just been navigating life as a single mum and just dedicating my time to him. Whilst dealing with this.
Pre-diagnosis
Initial symptoms
My first real symptoms of primary myelofibrosis basically start back in 2021 and April.
I was 32 weeks with my daughter and I started getting pain in my calf, just throbbing pain.
So I was getting constant massages to try get rid of it. Initially thought it was pre-eclampsia. I was also experiencing extreme fatigue a lot throughout the pregnancy.
And then one day I was in the supermarket and I started getting a lot of pressure in my abdomen. I didn’t really think much of it and went home.
And then I started having contractions around 9 p.m. and they lasted until 3 a.m. I started experiencing fevers and sweats and because I had had such a horrible experience with my previous midwife, with my son, I left it and I didn’t want to bother my current midwife.
And so then I’d contacted her in the morning about it, and we went down to the hospital.
She did an ultrasound and found that there was no heartbeat.
Loss of her daughter
So then I had to give birth to my daughter. And it was just a horrific, horrific delivery.
Yeah, it lasted for a few days, and I was put on these inducing pills. They gave me too many of them. And her head basically went through my uterus; I suffered a uterine rupture during labor.
So then I was rushed into theatre, and I lost 1.5 to 1.7l of blood. After that, I was in an ICU for about a week due to complications, including pneumonia.
I had a really high heart rate. I had heart failure. And they didn’t really understand what was going wrong.
And then they found that I had had a blood clot in my heart, in my lungs, and a DVT (deep vein thrombosis) in that right calf. So I’m guessing all the massaging had possibly broken the blood clot off into different parts of my organs.
So they think they also think that it caused my daughter’s death. A blood clot had passed through my placenta, causing a placental abruption.
Seizure and stroke
So I left hospital, and then two weeks later, I had a seizure and a stroke, and I was rushed back into hospital. They had found that I had had a thrombosis stroke in my brain.
So I was put on warfarin for well over six months max. And then, originally the hematologist thought that I had blood clotting disorder.
So she put me on warfarin, then took me off it for about a year just to see how my blood platelets were going to be. And they weren’t coming down, they were rising.
Discovery and diagnosis
That’s when I started having my other symptoms. And they came on quite, quite quickly because I wasn’t on any sort of medication at that time.
I started just being extremely, extremely fatigued. My arms were really, really weak. I lost 20kg without even trying, within 3 months.
I started bruising, like all over my body and the weirdest places. Itching. Crashing randomly. Constant shortness of breath.
It was it was horrible and I just I couldn’t function at all. Throughout the day.
So then the doctor sent me to have a bone marrow biopsy. I was officially diagnosed with primary myelofibrosis in September 2023.
Reaction to the diagnosis
I guess that unknown feeling I felt within those two years of not knowing. It’s sort of hard to really know. I guess I was just going through day by day.
I initially thought because I had two blood transfusions, I thought that it was all the blood transfusions that were actually causing all these symptoms, and I just thought that was normal. And I also thought because of all the physical complications I went through, my body was taking a longer time to try and heal from all of that.
And then, straight after all of that, I was thrown straight back into being a parent, single parent. Yeah, it was pretty crazy.
So when I went in for the bone marrow biopsy, I felt really numb to it all, I think because so much had happened previously, I was just on autopilot, like, okay. Yep. We’ll do this.
After I got the diagnosis, I was absolutely distraught because I didn’t know much about the disease at the time.
And I didn’t know anything. If I was going to lose all my hair, or if I was going to have to take more time being away from my son. So many thoughts running through my head.
But there’s more. As it turns out, my cancer might have had something to do with my daughter’s passing.
When my cancer was diagnosed, they didn’t really say that they thought that I had it when my daughter had passed. It wasn’t until a few months ago that they had sort of written it in doctor’s notes, speculating that it had caused my daughter’s passing and that I’d had it while I was pregnant with her.
But yeah, the feelings around it. I was more so angry at the hospital and my midwife for not monitoring me closely enough, but I guess they couldn’t really do anything about it.
But yeah, it was a terrible, terrible time. I really lost myself and my relationship fell apart; I just wasn’t coping.
I had turned to drinking a lot, so that was like my medication while trying to be a single mum and trying to just push, push forward.
And yeah, so when they had told me that they thought that I might have had it when I was pregnant with my daughter, I’d already had a huge feeling that it had caused it before they even said anything.
Treatment
Oral chemotherapy: hydroxyurea
My treatment plan was to go on an oral chemotherapy called hydroxyurea.
So I started on 500mg. My platelets weren’t really doing anything. So they were going to double the dosage.
Discovery of pregnancy, and shift to immunotherapy injections: peginterferon
And then a week later I found out I was pregnant. And I was a mess because I thought, I’m gonna have to terminate this baby.
Then they congratulated me, and put me on peginterferon. It’s immunotherapy that’s administered through an injection. I do this myself, once a week, on Sunday nights.
So I’ve been on peginterferon and aspirin, um, throughout this pregnancy and it’s brought my platelets right down.
I’m also on clexane as well, just to prevent blood clotting.
I’ve been in normal range for the last few months, and I’ve felt the best that I’ve felt in the last few years, and everything’s just looking amazing with this pregnancy.
So I’ve been really privileged, even, I guess, divinely orchestrated.
Side effects
That being said, I’ve been experiencing some side effects for the immunotherapy.
I’ve had a lot of hair thinning, acne, a lot of fatigue. And loss of appetite. I don’t really have much of an appetite. I’ve started bruising again, too.
But I actually had more symptoms with the hydroxyurea than I did with the peginterferon.
So at this point I don’t have any bone marrow scarring. I just have a lot of fibrosis.
Looking forward
New treatment plans haven’t been discussed with me at all because I’m pre fibrotic with the primary myelofibrosis.
So they for now they haven’t discussed anything with me. And I am open to other treatments if need be.
A stem cell transplant has been brought up. But I’m sort of on the fence about it, because I’ve heard such horrific stories of people that have gone through it.
I don’t know if I want to put myself through that.
… over time, this cancer, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.
Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.
Takeaways and lessons
In the beginning, my mental health was really, really bad. I was thinking the worst of everything.
But then over time, this myelofibrosis, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.
Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.
Yeah, it’s been a huge challenge, but it’s been one of the best things to happen to me as regards my mindset.
I feel like I can overcome anything as long as I just remain positive.
I guess I also really started to find myself. After I got diagnosed with myelofibrosis, I had an answer as to why my daughter passed away. And then I knew that it wasn’t my fault, because for a long time I blamed myself. And I felt that I could finally move forward. I had that closure.
Then that’s when the healing really started. So when, when they got the diagnosis, the healing really started. So I guess it was a little blessing in disguise, even though it was what caused it all.
Now, I’m pregnant with another little girl. I have obstetricians monitoring me every four weeks, and also multiple scans.
I am 33 weeks at the moment, and they’ve planned all these scans to make sure that everything’s fine. I’ve got phone consults with my hematologist, monthly blood tests.
And my midwife, she’s amazing. She was like, don’t worry. If you know you have an issue, just ring me and I’ll come down in the middle of the night. We can check. She’s very, very onto it.
And she’s always happy to do extra tests and scans and things to make sure that everything’s good. So they’ve really looked after me now, this time round.
I’m due on the 2nd of July, but they’re going to get me an early C-section at 37 weeks due to the uterine rupture that I previously had.
In closing, I guess my message is, you know your body better than anybody else does.
If you have an inkling of whether you’re pregnant or you may have cancer if you have an inkling that there’s something wrong—put yourself first and go and get it checked.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Faye is in recovery from surgery for a rare appendix cancer called pseudomyxoma peritonei, and she is eager to share her story to help others who may be struggling with the same or similar health concerns.
Faye’s appendix cancer was discovered entirely by accident, in the course of treatment for an ovarian cyst. Though she has a family history of cancer—her mother having succumbed to bowel cancer just a couple of years ago—she did not expect her diagnosis, much less that she would have this particular kind of cancer.
Faye underwent what she refers to as “the mother of all surgeries”, HIPEC, during which 8 of her organs were removed and heated chemotherapy applied directly inside her abdomen, among other procedures performed. She was declared NED (no evidence of disease) afterwards.
However, Faye is not out of the woods yet. Her recovery has been slow and has had its ups and downs. Moreover, she still does have a long way to go; she will need to undergo scans for the next 20 years, with her first scan this coming November.
Despite her situation, Faye has found reasons to be positive and happy—and she is also driven to make a difference. She shares her story with us as part of her ongoing initiative to shed light on this rare kind of cancer and to let fellow patients know that they are not alone in their journey.
Name: Faye L.
Diagnosis:
Pseudomyxoma peritonei (rare appendix cancer). Low Grade Muccinous Neoplasm of the appendix
Initial Symptoms:
Severe bloating
Bad stomachache, especially after eating spicy food
Elevated CA 125 levels and tumor markers (attributed to an ovarian cyst)
… I appreciate waking up every day getting to see flowers or the sky, and it’s just minute little details now that you really do notice.
… You know, you just take in a lot more when you’ve had to fight for your life, which is what I’ve had to do.
Introduction
My name is Faye and I am from the United Kingdom.
I’m 39 years of age and I was diagnosed with a very rare form of appendix tumor called pseudomyxoma peritonei.
This is around a 2 to 3 in a million per year diagnosis, which obviously makes it extremely rare.
It behaves in a very strange way. I had it for 5 years and I didn’t know it was there.
It’s not your normal cancer where you’ll get nausea, you’ll feel the sickness, you’ll go, hold on, I’m not well here. It wasn’t like that for me.
Before diagnosis, I always loved to be active, traveling, going out with my dog and my partner, and just enjoying life.
Pre-diagnosis
Ovarian cyst
I just went in for an ovarian cyst which had grown to 17cm on my ovary. And then I came home with a cancer diagnosis. It was totally unexpected. It was a shock.
The only thing that was causing me problems was the cyst itself, bloating, tummy ache. And I just thought it was my period pains.
So my ovarian cyst made me very, very bloated. I was having severe stomach ache. When I ate, I’d feel full quite quickly like I’ve really bloated out, and I’ve not really eaten that much. And having tummy ache after I’d eaten certain foods like spicy foods I found didn’t agree with me anymore.
I also had elevated CA 125 levels and tumor markers. But the cyst can cause the CA 125 to be elevated, so there was no suspicion of anything cancer related before I went in for the cyst.
Operation to remove cyst and appendix
The only thing that my CT scan ever showed was inflammation of my appendix.
Even on the morning of the operation, my doctor actually said to me, I think possibly you’ve got a bit of endometriosis. So if that’s in there, I’ll scrape all that.
And the reason they found the tumor is because they agreed that when the gyno was in there, obviously doing the surgery for that part, that the bowel surgeon would join in on the surgery towards the end and he would come and take my appendix out. Just so I wouldn’t have any further complications later on down the line with appendicitis and have to have another surgery.
And yeah, even on the morning of the operation, I was like, I’m so scared. And I’ve been under anesthesia before. I was terrified that I just wouldn’t wake up. And then they just put me under.
And then I woke up in the evening on the same day and they said everything went well, the cyst was out.
And I said, is that it? It’s done with. And she said, they’ve taken a few samples of things. They will explain to you in the morning when they see you how the operation went.
I kind of read people and you can kind of tell if they’re trying to play things down. But there was no indication that they were trying to hide anything from me at all.
Discovery and diagnosis
So the doctors came in and said that the cyst operation went really well. We got the cyst out. However, we couldn’t take your appendix.
I’m really sorry, Faye, but we found a tumor on your appendix. We found a cancer.
Immediately they started to talk about further steps.
As it turns out, the tumor had ruptured. They brought up an operation called a right hemicolectomy, where they would get the deposits that had leaked outside of my appendix wall, because that’s where the tumor had ruptured inside the appendix. And then it releases a mucinous gel that just spreads all around your abdomen. And obviously it had broken through the appendix wall and it had reached into my abdomen.
They told me, I’ve got a few deposits on my small bowel and that’s it. So it’ll be a right hemi.
And they’re waiting for the biopsy results. But—they also left the cancer inside, which I couldn’t get my head around at first.
I was like, how can you not take the appendix out? How can you leave this tumor inside of me? Like, you don’t know what it’s doing?
And they were like, it’s doing nothing. It’s been there for a very long time. It’s extremely slow growing, and we’re certain leaving it in is the best thing for us to do until we get the biopsy.
And in hindsight, it was because I have heard cases since I’ve been thrown into the world of pseudomyxoma. I’ve heard cases where they’ve removed the appendix and unfortunately, some of the cells have spread further up the body, and then it’s become a different scenario for people.
So in hindsight, yes, they did me a favor, but it was very strange knowing that they’d found this cancer and they just left it there until I had, you know, the biopsy results.
Delays in receiving the diagnosis
I was told that it would take 2 weeks to get the results back. It ended up taking 6 weeks.
We had to raise a complaint because it just made me spiral.
Every Tuesday they would phone me and say, I’m really sorry we haven’t got your results back. And I’ll be like, but I’m in my bedroom here with the curtains closed, looking at funeral plans because I don’t know what this is or the extent of it.
You’re telling me that it’s nothing. But what if those results show actually you’re wrong and it is something a bit more serious?
So I was in the world of the unknown and I just didn’t know how to process it, what to think, what to do.
I had no motivation. I didn’t want to go out. I just thought, I’m going to die and I need to plan my funeral.
The official diagnosis
And then the 2nd of September is when I finally got the official diagnosis.
So they phoned me, and my partner answered the phone purely because I just didn’t want to answer the phone. If they were going to tell me that they’re not back again.
And my partner, I heard him say, okay, so it’s low grade. And then, yeah, the official diagnosis was that I have something called pseudomyxoma peritonei. It’s a low mucinous neoplasm.
And I asked her, okay, so the surgery is still going to be a right hemicolectomy. And she said, we need to refer you to our colleagues at Basingstoke who specialise in this type of cancer, and they will give you the best treatment that they can.
And I just said, is it going to still be a right hemicolectomy? And she said, I don’t think so. Basingstoke will tell you a little bit more when they get the referral, which we’re going to send shortly.
Colonoscopy
So I got diagnosed properly on the Tuesday.
I had to get a colonoscopy done, just to make sure that my large bowel wasn’t involved in any way.
My scans showed there wasn’t any involvement, but he wanted to be thorough. And, yeah, I had that done, and that was clear.
Because that’s how they found my mom’s bowel cancer. I lost my mum to bowel cancer two years ago.
So I was obviously very terrified of having a colonoscopy, thinking, you know what? If something else comes here to railroad me now and they found a polyp, or there’s something else going on, you’re just very irrational, but it’s so difficult not to be.
Reaction to the diagnosis
I guess until you’ve heard the word “cancer” yourself, it’s very difficult to imagine how one feels when you hear those words. It’s like the whole ceiling was just closing down on me.
You see, because of my mom’s passing due to her bowel cancer, I was kind of like, oh, okay, here we go again. History is repeating itself.
And there was a mirror directly in front of the bed. And I just looked into the mirror at myself and I just said to my partner, this is it. I’m going to die.
Treatment
Hyperthermic intraperitoneal chemotherapy (HIPEC) surgery
So I underwent something called “mother of all surgery”. Complete cytoreduction surgery, CRS with heated chemotherapy, HIPEC.
The operation took 11 hours, and I had to lose 8 organs to ensure that they got all the cancer out of my body.
So what they do is remove all visible evidence of disease. So in order to do that, I lost my spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes. I had to have a full hysterectomy.
The doctor did say that my ovaries were quite healthy. However, if I do not agree to them taking everything, I’m a ticking time bomb, so they had to go too.
I had to lose my belly button as well. They scraped my diaphragm. They scraped my pelvis from one side of it to another. They took my greater and lesser omentum, which is the fatty apron in your whole abdomen, in your tummy. And they took a little bit of the liver and scraped the liver off for good measure.
And then I had heated chemotherapy applied directly into my tummy—110 Fahrenheit of chemo blasted into me. It’s just a chemotherapy wash to kill out any cells that may be hiding away and can’t be seen with the human eye.
Basically, you’re like a stew on the hob. That’s the only way you can sort of describe it. You’re a slow cooker, you know, they’re just stirring around every 15 minutes.
Quite honestly, I didn’t expect to survive the operation.
On the day that I went down to theatre, I said to my partner, look after the dog. Your mum’s got the Christmas presents.
I did know the mortality rate was extremely low. And the doctor did say that, you know, you’re young, you’re healthy, you don’t smoke, you don’t drink.
I had also worked on fitness well up until the operation, because it’s advised that you really get your protein levels and your muscle built up to give you a head start. So, yeah, obviously building yourself up was advised because that gives you a head start on the recovery.
So I had the operation at 7:30 a.m. on the 1st of November. I believe that my partner got a call maybe about 6:00 or something to say that it was completed maybe 530, 6:00. And that I was in intensive care and they were going to keep me asleep. And they’d phoned him on Thursday to let him know when they’re going to wake me up.
So when I did wake up, I was just like… Oh. Okay. I’m here.
It was a very surreal feeling. I thought, I’m having an out of body experience. Am I not here or am I here? And then I remember feeling that my lips were just extremely dry. My throat was so dry. Obviously I had an NG tube right down my throat, which was really uncomfortable.
And yeah, I just remember saying to the lady, I’m dry, I’m thirsty, I can’t really swallow. And she just said, you’ve got a tube down your throat, so try not to move. I’ll get you a bit of water. And then she just wet my lips with a tissue and told me to just lick the water off my lips, because I couldn’t swallow water straight away.
And then she said that your surgeon’s just here waiting to see you. And then he stood by the side of the bed, and they were just asking me questions like, do you know where you are? And I was like, I’m in Basingstoke, the peritoneal malignancy unit. And they’re like, yeah.
And then Alex was like, hey, Fay, do you remember me? And I looked up and I was just like, Alex. I had to feel his arm just to make sure. Like you’re actually here. And he just said the operation went really well. Better than we expected.
And I’m pleased to say that we got it all, and there’s no more cancer.
And at that point I was just like, you got it all. It’s all gone. Like the whole nightmare was just over. And he said, yes, we’ve got it all.
He then said, I’m going to leave you to rest now. Your partner’s on his way.
And, yeah, they just left me in ICU till the Friday evening when they transferred me to the ward where my recovery really did begin.
When I came out of the surgery, I lost 10 kilos. I lost a lot of muscle mass. There was nothing to me. I was just a skeleton.
Recovery from treatment, and moving forward
So I first went to the ward to recover.
I think for the first few days it’s quite a blur, though I do remember some things.
I was on morphine. I had like a PCA where I’d administer my own morphine, just press this button. It would refresh every 12 minutes.
I had an epidural in my lower back. I had bowel stents. I had massaging boots for DVT, blood clots on my legs, which were very noisy and annoying. But therapeutic at the same time to get me to sleep in the evening.
I remember being told that I could have some jelly and soup on day four. They came around with the lunch trolley, and they were wanting to order me a lunch. And I was like, what? Me? No, I can’t eat. And they were like, no, you can, you can have soup and jelly now because you’ve opened your bowels. And I was like, oh, okay.
So it actually felt good to pick up a spoon and feed myself because I had this NG tube up my nose, which was so uncomfortable. I think for me that’s the worst part.
And the chest drains. I had six chest drains. I had two here, two in my waist and two at my pelvis, so they were quite brutal when they pulled them out. A lot of people say like, oh, it doesn’t hurt that much. No, they really do.
And I just had so many wires and lines and it was just very surreal.
And even more so that I was now there without any cancer because I was on the ward where other women, sadly, have gone in for the same procedure, and there’s 20% of cancer that’s embedded deeper into organs that are too vital, they can’t touch. So they just are on palliative care. So yeah, it’s not a very nice place to be.
Day six. They took my epidural out of my back. And then I was like, oh my God. And they showered me and patted my hair for me because obviously I didn’t have much energy to even lift my arm to clean my teeth.
And then I felt like, wow. Like I feel a different person, like all this stuff’s gone. But boy, that evening did I get the mother of all gas pain? As soon as they had the epidural out, I felt everything. Everything.
I had 14 hours of trapped gas that I was literally begging them to give me more peppermint tea or more peppermint water or painkillers. And they were like, we can’t give you painkillers. It won’t make a difference. You need to try and pass it naturally. But I had a 16-inch scar down my middle from the operation.
And that was that was quite an ordeal, trying to trying to get that gas out that had built up in my tummy. It was really, really painful.
… it’s just about trying to get back to things that you used to love before. Thinking that you can never get them back.
But you will.
How she is doing today
Fast forward to today, and I’m still going through recovery.
On the 1st of June I was seven months post-op. It’s up to 12 months.
So recovery has been very up and down. It’s not linear. It’s quite hard hitting on the body, it’s brutal, not a walk in the park. I’m not going to wrap it up for anyone and say it’s easy, because really it isn’t.
I think I started to feel better, more myself, probably around the 3-month mark. So the surgeon did say to me, for some reason, we don’t know why, but it seems to be between the 8- and 12-week mark that patients suddenly say that they feel that they’re more on the up than before.
I started to get on the exercise bike gradually, as advised by the physio. I did five minutes increasing it to seven minutes, ten minutes. And I have actually gone to 40 minutes now.
I still struggle, you know, I still get a bit of fatigue if I overdo things. Driving my car is a little bit uncomfortable if I drive long distances. I haven’t been able to stand and do any washing up or cooking as of yet. Because I still get a bit of discomfort around the tummy where my scar is. But yeah, I’m getting there.
I mean, I’ve been out with my dog, which was really nice because I didn’t think I’d ever be able to walk him again. And it’s just about trying to get back to things that you used to love before. Thinking that you can never get them back. But you will.
I went back to work. I’m on a phased return. I work at the airport, so it’s quite physical and busy.
Yeah, it’s just the new normal. They call this the new normal. And it’s just about getting to know your body again.
Thankfully, I haven’t had any problem with food. I know a lot of patients have had issues. They can’t have onions, they can’t have steak, they can’t have certain foods. But me, thankfully, I haven’t suffered too badly with food.
When I came out of hospital, it was jelly, ice cream, soup, just liquid, you know, a very low residue diet. So my bowel could just fully recover and just heal. But internally, I’m still healing to this day.
20 years of scans
Some have said that my treatment was like ringing a bell. But it actually isn’t.
I’ve got 20 years of scans. I’ll have scans annually for the first 6 years. And then at the 20 year mark, I’ll skip 1 year at 6 years and go to 8 years, and then it’s 10, and then I believe it’s 14 and then 16 and then 20, I think is when I’m officially cancer free if I’m still OK by then.
So for now, I just get called NED. No evidence of disease. Because they said, you’re not out of the woods just yet.
Trying to process that I’m under scans for 20 years is mentally difficult. It’s like you said, with normal cancers, you’re in remission for 5 years and that’s it. You know, you’re free. Off you go. So yeah, to have 20 years hanging over my head is very difficult to process and get my head around.
However, on the flip side, a lot of people say, at least you’re being under surveillance for 20 years. You know, a lot of us get 5 years and then no more. And then we sit wondering like, oh, okay, I’m on my own now. Am I okay?
But yeah, I mean, being so young, like age 39, I won’t be declared cancer free till I’m 59. So that for me, is a lot to try and process mentally.
One scan between 39 and 59. One scan could change my whole life again. And then, you know, some people have to have a second surgery. There has been reoccurrence, but there’s 20% get reoccurrence, and that’s across all grades.
I guess I’m lucky that I had low grade, where, you know, it’s not the aggressive type Yeah, it’s very strange trying to get your head around that.
My first scan’s this coming November. I haven’t had any scan since I’ve come out of the surgery, so I’m quite nervous, anxious about this upcoming scan. And I have been since I came home last year in November.
You know, on my first scans coming up now, is it going to show me that they actually got it all, or is there going to be a cell there that was there that’s now had a year to do something, and they’re going to tell me they can see some mucin again on a scan. You just think all these things.
A lot of people say like, don’t look at the future, look at the now. But I think it’s easy for people to say that when they’re not in the situation that I’m in and others are in.
You know, I know people say stuff to try and play it down to make you feel better, but on the flip side, it really doesn’t make you feel better when people try and say to you like, don’t look in the future, look at the now. And it’s like, well, I’m sorry.
My future is, you know, scans for 20 years. And that’s a reality of my life and that’s my future.
No hair loss
I also wanted to share that a lot of people say to me, you didn’t lose your hair. Hey, I had heated chemotherapy blasted directly into my tummy as part of my HIPEC treatment.
Thankfully, I haven’t had to have “proper” chemo because this cancer very rarely or doesn’t really spread through your blood or your lymph nodes. It stays very localized in the abdomen and that area.
Sure, it’s a hard cancer to combat. You have to have the massive surgery to do it. But it’s also one of the easiest cancers to get rid of because it doesn’t usually spread anywhere else like your brain, your lungs and things like that.
So, yeah, you don’t lose your hair with that.
Reflections on her experience
I think with my mum dying from bowel cancer, I always had the fear of cancer. Like, you know, I’m a mum’s daughter. It’s genetic. It’s hereditary in some certain cancers. But I never imagined that I would have it this soon.
So, yeah, my perspective on life just changed massively.
I’ve got no time for people’s drama. I’ve got no time to argue. I just want peace and to just live life.
And, you know, I appreciate waking up every day getting to see flowers or the sky, and it’s just minute little details now that you really do notice. Whereas before you could be like, you know, it’s just a tree. Yeah, it looks pretty. But now it’s like, wow, look at that tree.
You know, you just take in a lot more when you’ve had to fight for your life, which is what I’ve had to do.
… that’s the world that you go in after you’ve had cancer.
You just hope for the best. Really.
Why she’s telling her story
And that’s why I went out and decided to tell my story from my admission into hospital, because when I was diagnosed, there was there was no information for me about this cancer.
I felt very alone and isolated, and I just don’t want people to feel that way.
And anyone that’s newly diagnosed with it now hopefully sees my page or my story and and they will have a better understanding and think, wow, you know, she’s lost 8 organs and look at her, she’s survived. She’s living, she’s cancer free. I can do this as well.
So it’s just about giving someone hope because I think anyone with a cancer diagnosis— that’s all you live on now: hope.
You hope it doesn’t come back. You hope that you get to see your retirement age. You hope that you go forward with your life now without any cancer, and you hope that every yearly scan is clear.
And that’s the world that you go in after you’ve had cancer. You just hope for the best. Really.
Going global
My story has been shared and read all around the world. I mean, I never expected to be global in my wildest dreams.
The press approached me here when I was diagnosed because I’ve got a modeling background. I had quite a following on Instagram. Which is why I decided to spin that now. I don’t want to be the model version of me anymore. I want to go out and spread awareness and use my platform that way.
And when they approached me after I was diagnosed and I just said to them, look, there’s not really any story just yet, you know what? You’re going to have to wait until I’ve got something to tell. Because after undergoing the mother of all surgery, you want to show people that it’s possible that you can survive it and you can come out of it.
So they waited for me. And December, my story dropped with one of the newspapers here as an exclusive. And then that was it.
Next thing my friends are texting and saying, you’re in Tunisia and Turkey and Hong Kong and Brazil and Sao Paulo. And they’re sending me screenshots of the news articles. And I’m like, well, okay, this is insane.
So yeah, I’ve gone global 29 countries and counting. Yesterday I was in the news in Denmark, which a friend showed me.
And I’ve got more media coming. I’ve coming out this month in the UK health magazine. I’ve got radio interviews lined up.
And obviously I’ve done my own reels on my page and Instagram, just about HRT, because obviously I’ve lost all my reproductive system. How it is with the HRT, what women can expect, what the methods are.
I started to do it because like I said, when I was diagnosed, I didn’t know what to expect at Basingstoke. You know, I went in two days before the surgery to prep me and I didn’t know what to expect. So I thought to myself when I was in my room that night, right, I’m going to start vlogging day one. What it’s like here, what I’ve had done day two.
And yeah, just the morning before the surgery and I just carried it on all through my recovery, I’ve been documenting and just vlogging everything and yeah, just to give people hope.
Supporting campaigns
Locally, I’ve also been doing a lot to support campaigns that fight cancer and help fellow patients.
Cancer Research UK are a very big organization here in the UK. They reached out to me and said, you know, we’ve seen your story. We think whoever hears it, it will have an impact on them. So we’d like to bring you in on a campaign.
And now I’m doing race for Life in Brighton. They’ve chosen me to be the face of race for life in Brighton. So I’ll be starting the horn off to sound the race. And I’ll also be doing a little speech on stage on the day. I signed up for a 10-K. I don’t know if I’m going to complete it.
So loads of people have just wanted to bring me on board and it’s great. It really helps to spread the awareness, but show people that we’re not just a statistic.
You can go out and you can still rebuild your life after cancer. Yes. It’s hard. I’m not going to say it’s easy, but it’s all you can do, right?
We’re still living. We’re still breathing. So just enjoy it.
… just have the faith that our bodies are stronger than we realize.
… my body has done amazing work and still is doing amazing work to get me where I need to be.
Closing message
So my message to people that are watching this is yes, it’s scary. Yes, it’s overwhelming. And it’s fearful. But you know, you’re not alone in those feelings.
Anyone that has been down this road, all your feelings are valid through the whole of your journey. You know, it’s how you feel about it. So don’t let anyone tell you any different.
If you need to cry, cry. If you need to scream, scream. But just have the faith that our bodies are stronger than we realize.
And I’ve learned that going through this major surgery that my body has done amazing work and still is doing amazing work to get me where I need to be. So never give up.
I’m also going out to show people that cancer’s not pretty.
You know, I documented when I was in hospital crying all through my recovery. Like, this is brutal. I can’t cope. And it’s important because I think I’ve had the modeling background.
People just think, oh, you know, pretty girl, images are photoshopped and edited. Of course they are photographers’ and editors’ images. But it’s important to show people the reality of it, as much as it’s hard hitting and it can be triggering for some people to see.
And that’s what I think will help people, especially newly diagnosed people in the future.
“My God, it is a journey. But she got there. So hopefully I will, too.”
Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers Treatments: Hyperthermic intraperitoneal chemotherapy with mitomycin C (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
Symptom: Severe abdominal pain Treatments: Surgery (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with bevacizumab & capecitabine)
Mark and his family had just moved to a new city where he was going to start a new job. He had been experiencing weight loss and low energy, which had been easy to attribute to stress from the move. However, a visit to a new doctor for a routine checkup revealed that his spleen was quite enlarged and his white blood cell count alarmingly high. He had also been experiencing other symptoms such as heavy night sweats and a frequent need to urinate after bedtime.
Tests conducted by an oncologist confirmed that Mark had CML. Mark quickly began a range of treatments aimed at treating his spleen through lowering his white blood counts, as well as addressing his leukemia through tyrosine kinase inhibitors or TKIs, including Sprycel. His doctors also helped him become more familiar and comfortable with living with CML.
Mark’s story underscores the importance of listening to one’s body and not shrugging off symptoms, and of finding a supportive community that includes doctors, family members, and colleagues.
In addition to Mark’s narrative, The Patient Story offers a diverse collection of stories about CML. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Mark K.
Diagnosis:
Chronic Myeloid Leukemia (CML)
Initial Symptoms:
Weight loss
Low energy
Night sweats
Frequent need to urinate after bedtime
Enlarged spleen
Elevated white blood cell count
Treatment:
Tyrosine kinase inhibitors (TKIs) including Sprycel
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
