What You Don’t See

Recovering from a disease is never easy. It doesn’t matter what you were diagnosed with – there is a cycle that we are all a part of……ignoring symptoms, then Googling symptoms, actually going to the doctor, then more doctors, diagnosis, treatment and recovery. When we are “cleared” of our illness/disease/ailment people who haven’t experienced that in their life seem to think that the worst is over. And people are well meaning for sure, but the worst is not necessarily over.

I am “cancer free” (but not officially declared N.E.D. or in remission) but I am living on a maintenance chemotherapy regime of 1800mg, twice a day of Xeloda. Two weeks on, one week off. Then every three weeks I get bloodwork and an infusion of Mvasi. This will continue for an undetermined amount of time. People tell me “at least the cancer is gone” and “wow you look so good” but there is so much that goes unseen when it comes to those statements. (If you are not a fan of TMI, I don’t suggest you read the next part.)

The meds have given me side effects such as: dry mouth (in the middle of the night especially, it wakes me up because I feel like I am choking and can’t swallow from the dryness)…..excess saliva…..I have very little taste left, and what I can taste when I eat and drink is “off”, I am basically eating and drinking just to survive at this point…..I have little sense of smell left…..I constantly have some type of congestion in my nose…..I have hand and foot syndrome to the point that my feet are so swollen it is difficult to put shoes on and when I do I can’t wear them for long periods of time…..when I walk the sensation is like walking on thumbtacks strapped to legos…..my hands are incredibly dry, discolored and the skin is blistering, cracking and peeling off my fingers…..I have little feeling in the first three fingers of both hands…..the tips of my fingers are so painful that I can’t perform basic functions without wincing in pain…..I cannot use warm or hot water on my hands or feet…..when I go outside and it is a sunny day my hands immediately begin to swell. If I have to leave the house for errands, work or anything else, I have to plan ahead of time what I am going to eat, because depending on the day, food sets me off and I wind up in the bathroom, a lot, and sometimes I am not fortunate enough to make it to the bathroom – so I make sure when I go places I know where all the bathrooms are, that I have an extra set (or two) of clothes available, and that I have an “out” if I need to leave because I have had an accident and do not want to draw that sort of attention to myself or have to explain why a 43 year old woman can’t make it to the bathroom. To get dressed it takes me twice as long and I also have to take into consideration the adult diaper that I wear when I leave the house and have a covering that I can wear to hide my butt “just in case”. If it is a particularly active bathroom day, I am dehydrated, exhausted, have the chills and “lower region” pain. As much as I want to be out and do (mask wearing and socially distant) activities, I live with so much fear and apprehension that my symptoms are going to strike that I only venture out for short periods of time. Maintaining an attitude of happy, levity, jovial and nonchalant about how I am really feeling is exhausting. And don’t get me wrong, I do genuinely feel those emotions, but not as often as I want and not always as real as I want them to be.

This is what living “cancer free” looks like to me. These are the things you don’t see. This is the ugly side that people don’t really want to know about and the things that other survivors of illnesses/diseases/ailments try to make palatable for others on their social media posts. We try to educate and inform, not bring people down. But it is easy to scroll past, refresh the feed and see what else is out there. We blog, we post, we share because community is important, knowing there are others out there who have the struggle and we aren’t alone, that our loved ones are in it too, makes a difference. There are things you don’t see but it doesn’t mean that they do not exist.

Slowly Falling Apart to be Put Back Together Again

When I had my “last” surgery in June to remove the latest round of tumors from my March diagnosis, I thought I was done. Much to my surprise, when I went to the oncologist’s office for my follow up visit, I met with one of my doc’s associates, just like I always do. Before she left the office she told me “well, the doctor will be in soon to discuss the plan of action”. After she walked out I sat there, slightly confused and started to panic. Plan of action? What? I thought we already did our plan of action. How could there be more? When my doc came in he explained to me, yes the chemo shrunk my tumors and the surgery was successful and there was no more visible evidence of disease but because the cancer came back so quickly he wanted to act more preventative in nature. So what was decided on was oral chemotherapy, Xeloda, 1800mg (5 pills) twice per day, 14 days on, 7 days off, plus a 15 minute infusion of Mvasi every three weeks. How long I will be on this is still to be determined. When I left the doctor’s office I sat in my car and cried. I had felt so positive going into his office thinking I had made it around the corner and was moving forward just to be shot down. How could I endure more treatment? And even worse, there was no magic number of doses and a treatment end date. Then I started freaking out over the size of the pills, the side effects, etc. When I received my first round of meds, I was pleasantly surprised that the pills were easy to swallow and my side effects seemed minimal. But then I started my second round of meds. And I developed something called hand and foot syndrome. Hand-foot syndrome causes redness, swelling, and pain on the palms of the hands and/or the soles of the feet. Based on the information that I got off the internet (gotta love Google), I have a severe case, which includes cracked, flaking, or peeling skin, blisters, ulcers, or sores on the skin, severe pain and difficulty walking or using your hands. And then I cry some more. As I look at my hands and each day more skin starts to peel and fall off and the pain increases and the ability to do simple tasks decreases, it is hard not to question if this is all worth it. The medication and what it is doing to me, the things on the inside, the things that I do not see. But then there are days where I look at it as a shedding of the skin, a rebirth of sorts. That I have to be torn down, slowly, piece by piece for me to get stronger, to be more confident and sure of myself, to accept the things that have happened to me, to be more prepared for the things to come, to make changes in my life that optimize my overall health, to challenge my mindset, to be better. These storms and challenges do not always come into our lives to harm us, sometimes they are to help us. So what is it that you see as a storm or a challenge that you can “reframe” and make it work for you and what you are trying to achieve in life?

The Story in Our Scars

Over the years I have accumulated various scars across my body. When I look at myself, at first glance I recoil because of how “damaged” that I feel like that I look. But if I really think about it, they each tell a story. Some are happy memories like the small scar on my right wrist is from making pancakes when my stepdaughter visited for the first time or the small faded scars on my knees are from middle school when my classmates and I used to jump off the roof of my friend’s house into her swimming pool (sorry dad). But there are the other scars, that chronicle a more painful journey, like the round scar on my abdomen from the ileostomy I had and, the small incision scars from my three surgeries over the last year and half, all related to my cancer journeys. They are meaningful to me, but also superficial. For a lot of us, there are scars that are never visible to others – the emotional scars of loss, of abandonment, of abuse, of shame, of guilt, and so on. We all have these internal scars, and they are different for each of us. Mine (well at least some of them) come in the form of loss, guilt, remorse from bad choices, shame from abusing my body. My status as a mental health therapist doesn’t make me exempt from feeling these things and carrying them with me. It doesn’t make me exempt from still feeling the feels associated with them. What I have learned over the years is that these scars shape and mold us. While we are the midst of the storm, we are unable to see the lesson or value in them. We cannot fathom how we are feeling can possibly benefit us or ever be a good thing. We cannot comprehend how things will ever be better or that we will be able to feel something other than the pain/sadness/misery we are feeling now. But one day there is a shift – and we don’t always notice it, but all of a sudden it hits us, and it is “okay, I actually feel pretty good today” or “huh, it has been x many days since I have been feeling ________”. The good days start to outweigh the bad. We heal, we grow, we have hindsight. Our scars aren’t all bad. Just because people cannot see them doesn’t mean we can’t or shouldn’t share them. There is power in our story, there is purpose for our pain. We weren’t meant to go through it and do it all alone. There are other people out there who have been where you are, or are maybe still in the same place as you. Our scars tells a story, and in sharing our story, it keeps these scars from having power over us. In sharing our story, it creates community, it creates healing. Do not fear, do not be ashamed, you are not alone.

Entitlement

Every few days or so I get “ill” – for sake of not providing TMI, that is what I will call it. This results in lower body pain, chills, and exhaustion among other things. While I am down and out and resting I go on Instagram and Twitter. Over the course of the last year I have met and come to know many people, via social media, on their own cancer journey. There are those who are terminal, those in their 2nd (or 3rd of more) battle with cancer, those who are sick all the time and can’t work or perform basic functions. These people have amazing strength, amazing honesty and the best senses of humor I have ever come across. They have been my inspiration and my teachers. So as I sit back with my “ill” moments, I look at my cancer community and think to myself – what I am feeling now will pass, I have no evidence of disease, what do I have to b*tch about, what do I have to be down about? These people have shown me what battling real life threatening and life altering (and sometimes life ending) cancer is about. Am I doing my Fellow patients and survivors a disservice by being a “baby” (in my eyes at least) about how I am feeling? Am I doing them a disservice by not living my life to the fullest? Am I doing them a disservice by not advocating enough? Am I doing them a disservice by not taking care of myself better with this second change I got? I have gotten off “easy” compared to others that I have seen and those I have come to know. So am I entitled to b*itch, and moan, and whine, and complain, and take a sick day? Or do I put on my big girl panties and honor those who I have seen and those that I have come to know and take care of myself, life my life to the fullest – pursuing my dreams, and advocate for those who can’t? Perspective is everything and as I become further removed from my last day of chemo and my last surgery and I start to heal internally, the fog slowly lifting from my brain, my purpose becomes clearer. At the end of the day I am grateful for the journey 2019 had me on and the role it is playing in my unknown future and the road ahead.

What’s the Deal with “Cancer”versaries anyway?

Tomorrow, January 21, 2020, will mark one year from when I was officially diagnosed with cancer by an oncologist.

In the year or so following up to my diagnosis I had experienced random symptoms here and there that I attributed to poor diet, lack of sleep, massive stress, no exercise and so on. Beginning around mid September of 2018 my symptoms began to change and become bothersome with the worst of it manifesting in November. I had seen my primary care physician and since she knows I only go see her when it is my annual exam she knew something was up. I read her my list of symptoms I kept track of. She didn’t appear overly concerned but since there were a few symptoms that she didn’t feel comfortable with she thought it best for me to see a specialist and get a colonoscopy and endoscopy done.

When I saw the specialist, he said my symptoms sounded like pelvic floor disorder but wanted to proceed with the colonoscopy and endoscopy anyway just to cover all bases.

On New Year’s Eve 2018 my husband and I went in to have my procedure done. Coming out of anesthesia and getting myself put back together to go home the doctor came in and said I had what looked like a bleeding festering mass in the rectosigmoid junction that appeared to be malignant. I was sent on my way with a referral to a colorectal surgeon and an oncologist. On the way home I looked at my husband and said “hey I know I am still coming out of anesthesia but did the doctor say I had cancer?” and my husband said yes.

So began the surreal experience that was my 2019. My first CT scan was January 3rd. My first colorectal surgeon appointment was January 10th. My first appointment with the oncologist was on January 21st at which time I received my official cancer diagnosis and course of treatment options and outcomes. My second appointment with the colorectal surgeon was the afternoon of that same day. And then an MRI on January 27th and another one on January 29th.

My preop appointment with my surgeon was February 4th. A follow up with my oncologist was February 11th to confirm the surgery was good to go and the best option to start with. I had preadmission testing on February 25th and surgery on the 26th followed by a 5 day hospital stay.

I came out of surgery with a 6 week temporary ileostomy due to the size and location of my tumor. It turned into a 9 month temporary ileostomy on March 11th when I saw my oncologist and he told me that the cancer started to metastasize to my lymph nodes and as a precaution we were going to do 6 months of clean-up chemotherapy starting on April 1st. So on March 19th I went in for an outpatient “port placement” procedure which will be in the next 5 years as long as I remain cancer free.

I picked up some cooties on a cruise I was on in July (that whole compromised immune system thing cancer patients have) and wound up in the hospital again 4 more days. Which was then accompanied by follow up visits with an infectious disease doctor.

However, I passed this whole cancer thing with flying colors. Completed chemo on September 19, 2019. Follow up CT scans on October 30, 2019. Had my ileostomy reversal surgery on November 5, 2019. I was declared N.E.D. (No evidence of disease) on November 12, 2019.

I say all of that to say this…..my journey is not over. The recovery process from an ileostomy reversal has its own set of specialness with an undetermined amount of time for those symptoms and side effects to subside. Yes there is no evidence of cancer in my body. As preventative care I have to go every 4 months for CT scans and to follow up with my oncologist/have my port flushed – this is for two years. Every February I have to get a colonoscopy done – this is for five years. Every August I have to get a sigmoidoscopy done – time for this is undetermined.

All of this stuff I recognize is for my health and well being but in all honesty every piece of it shares the sh*t out of me. I laugh and joke and blow it off but it shakes me down to my core. A friend and I were texting today – she having had her own cancer journey last year – and she asked “I wonder if I’ll always have this little nagging feeling wondering when/if it will come back.” And that is where I am at……cancer can come back at any time in any form or not come back at all. I follow the doctors’ orders on my follow ups and the rest is up to me – diet, hydration, exercise, stress management, adequate sleep, self care. This is what my life is now. The cancer may be gone but my journey is still in the starting phases.

So I beg you – when you have a family, friend, acquaintance that you know is battling or is in remission from cancer – learn what you can about the disease and their diagnosis and treatment- ask the patient flat out “what does that all mean” or “how can I help you or your family”. You don’t have to know what to say or know all the answers. Sometime just knowing people are there if they need it is just enough. Also, remember their caregivers and their kids. They are going through it too in their own way and need just as much support as the patient.

This never ending cancer journey takes a village.