From Cancer To Colostomy – An Unexpected Journey
A word of warning: the following entry is quite long. Someone suggested that my story might help or inspire someone else, which is why I am posting it here. If nothing else, I hope you enjoy the read!
Throughout my adult life, I don’t remember ever being really sick. I had the occasional cold, but largely was quite healthy. I never complained if I felt unwell and never took time off from work for any reason, let alone a major illness.
In spite of this, for the last year, I have been struggling with some bothersome digestive issues. I was raised to believe that you didn’t get to be sick, that feeling cruddy was “all in your head”. Add to that the fact that I did not have health insurance and that the problems I’d been experiencing were rather embarrassing to discuss, I delayed seeking medical help. After all, it seemed everything was still working more or less the same and I wasn’t in any pain. Looking back now, I think that fear of what the doctors may find also played a roll in my “ignore it and it will go away” strategy.
I began to experience diffuse pain in my pelvic region around Christmas of 2017. While noticeable, the pain was controlled with ibuprofen and Tylenol. By mid-January, I was waking in the night from intense pain. It began to feel as though my tailbone had been broken and I was having sharp, shooting pains that originated in my hips and bolted down my thighbones like lightning.
Soon, my symptoms progressed to a point where I could no longer ignore them. By March of 2018, I was visiting the bathroom some 20-30 times each day, although my output was often non-existent or came in the form of dizzyingly painful cramps coupled with diarrhea. I had begun to lose weight and had no appetite whatsoever. I couldn’t bear to sit any for any length of time. It was time to seek medical attention.
It was at this time that I confessed to my adult daughter what was going on. She insisted I see a doctor immediately but I was very reticent about going to the Emergency Room. We compromised with a visit to one of the local walk-in clinics the next day. Par for the course, they refused to see me and said that I had to go to the Emergency Room after all.
So that is how in March of 2018 I was compelled to visit the ER at Sarasota Memorial Hospital. I was honest with the doctor about my symptoms and how long they had been going on. He drew only one vial of blood and performed the world’s quickest digital exam before declaring that I had internal hemorrhoids and was fine. At the time, I believed this was a good diagnosis and I went back to ignoring the steadily worsening symptoms.
Unfortunately, what I had taken for good news was actually a misdiagnosis that delayed the diagnosis and treatment of my real condition for weeks, if not months. By the first week of April, I had begun to lose weight rapidly. I was no longer able to sit or stand without experiencing excruciating pain. I was forced to quit my job because I could no longer perform my duties.
So it was that about one month after my Emergency Room visit, I was suffering significant malnutrition and weakness. I felt most comfortable lying in bed, but doing so was contrary to every lesson I had ever learned at the knee of my father about being sick. By this time I was feeling incredibly lazy because I was so unable to be upright. It seems I was born with an extra helping of guilt so I felt terrible that I wasn’t contributing to the household and wasn’t able to do even simple fun things with my daughter like walk around the farmers market. One April afternoon, my daughter returned home from work and told me she was going to the beach. I wanted desperately to go with her; I was going stir-crazy from being indoors and I felt like I was missing out on spending time with my daughter. Just a little time lying in the sun with my girl – what could go wrong, right?
We made it to the beach, I was gritting my teeth the whole way against the pain from every little bump in the road we hit, but we made it. I helped to unload our beach stuff and we settled on a spot not too far from the car. It was pretty hot that day, it is the Sunshine State after all, and I remember feeling very out of breath, as though the world were contracting around me. Long story short? I passed out after only 15 minutes on the beach. My terrified daughter had to enlist a complete stranger to carry me to the car and help me in.
I think it’s better to leave out the stern talking to that I got from my daughter after that incident. Suffice it to say, that we decided to go to a different doctor for a second opinion. I had no medical insurance and soon learned that in Florida at least, getting a doctor to treat you without insurance is a little like hoping to catch the Easter Bunny laying eggs. In the end, I was stuck with the County Health Department. They would accept me as a patient and if my circumstances changed financially, they could change my status so that I could be seen at a lesser expense.
The first person I saw was a Nurse Practitioner, and she ordered a fairly complete panel of blood work to be drawn. She did an agonizing physical exam and then sent me on my way with prescriptions for antibiotics and antifungals, as well as a Fit test that was designed to determine if there was blood in my stool. Honestly, that seemed like far too much involvement with poo to me, but I played along with the hope that at some point they would give me something for the pain. What a laugh, instead of receiving treatment for the intense pain I was experiencing, I was told to stop taking the over the counter medicine too! It seemed I was living in my own medical nightmare; however, my daughter encouraged me to soldier on.
Weeks went by with no improvement before my follow-up appointment with the nurse. This time she agreed with my original diagnosis from the ER, stating that I had hemorrhoids, but she though there was something else wrong too. Now it was a matter of figuring out what. She ordered even more blood tests and referred me to a gastroenterologist and a gynecologist.
I immediately set out to schedule the appointments but it was still weeks before I could get in to the specialists. As it turned out, I saw the gynecologist first. This doctor was very thorough in his exam and in taking my medical history. I believe this doctor very likely saved my life. He did not believe that I had hemorrhoids at all, but rather told me that the tissue he could palpate on exam was far more indicative of thickening in the recto-vaginal septum. The doctor said that I needed a colonoscopy right away. Thankfully my appointment with the gastro doc was only a few days away.
My appointment with the gastro doc was so brief that at first I thought he was dismissing me, however, when he followed me up to the scheduling desk and asked if I could do the colonoscopy the next day, his concern was clearly revealed. I scheduled the test out a couple of days so that my daughter could come with me, gathered up my test prep-kit and went home to worry while I continued to suffer from constant, epic pain.
It was May 23rd that I had my test. The doctor waited until I had regained consciousness to deliver his analysis. My daughter and I held hands as he described the “mass” he had found, only barely hearing his next words about starting chemotherapy and radiation right away so that surgery could be performed as soon as possible. He put a rush on the pathology report and we scheduled a follow-up appointment to see him the next week. He made it clear that I was in a situation where time was a factor and that I couldn’t delay seeing an oncologist and beginning treatment.
We set to work on getting medical coverage through the county, the only way we could afford to see a specialist. Thankfully we were finally destitute enough to qualify, with me being out of work and having burned through all of my savings to pay for all of the visits and tests so far. With that small bit of good news, we went home to wait for my next doctor visit.
I should mention something at this point before I continue with my story. One of the first things people would ask me was how I felt when I learned I had cancer. To be honest, I didn’t really feel much at all. I suppose part of that was shock. For the most part, I was relieved that I finally had a diagnosis. Even though no one would be happy to learn they had cancer, I was happy that at least we finally had a donkey to pin the tail on. Now we could start in on getting me better. So I suppose that my response was that I was anxious to start down the path to recovery. At no point was I particularly scared (that came later), or particularly sad. I believed from the beginning that I would survive.
The day before my follow-up appointment with the gastro doc, I spotted what I thought was a tinge of pink in my urine. Even though I was seeing my doc the next day, I called his office to see if they wanted me to wait until my appointment or if they thought I should go to my favorite medical establishment, the Emergency Room. I’m sure you can guess which choice won that coin toss.
I guess you could say that the true beginning of my cancer treatment occurred that day in the ER. It didn’t take long for the Emergency Room doctors to determine that I needed a blood transfusion right away. They also ordered more blood tests and what felt like every scan ever invented. I was admitted and transferred to a semi-private room for the transfusion (I had no clue how long those took!) and then I was shuttled back and for between there and imaging for the rest of the night. At some point, my veins started collapsing so they implanted a PowerPort device. They administered pain meds at some point although I don’t remember when. My last clear memory of that time period was when they transferred me to the cancer floor (commonly known as Waldemere 8).
I was only partially aware of my surroundings when they rolled my hospital bed into the room on Waldemere 8. My attention snapped to life quite quickly when my new roommate began to cry and wail, asking repeatedly for someone to help her. That was the first time I felt fear begin to wrap its insidious little tendrils around my thoughts. Thankfully, I triggered the PCA Pump and dropped out of reality altogether. When I awoke, there was no roommate. I was in a private room where I would stay for the next 30 days.
I have very little memory of the next two weeks. I remember floating in and out of reality on a cloud of dilaudid while people circled around me like ghosts. During this time, a veritable hoard of doctors began to traipse through my room on a regular basis. It was quickly determined that my cancer was Stage III, borderline Stage IV. (To this day, that has never really made sense to me. I would think that being Stage IV was a little like being pregnant, it doesn’t happen just halfway, but I’m not the doctor, so who knows.) They found one massive tumor in my rectum with extension into the perirectal fat of the levator sling, and extension into my vagina with the delightful bonus of a rectovaginal fistula. They also discovered bi-lateral adenopathy in my inguinal lymph nodes and what they believed was malignant ascites.
In English that translates to “you’re in deep s**t lady”. I had one central tumor the size of a tennis ball; my body had created a bypass around the blockage, tunneling through adjacent structures so that feces exited through my vagina; they had discovered evidence of cancer in lymph nodes on both sides of my groin and they saw what they believed was cancerous fluid produced by the tumor that had accumulated in the region.
Treatment commenced almost immediately after my admission to the hospital. It was at the beginning of week 3 in the hospital that my saving grace, Dr. Patel, would step in to have my medication reduced. I was taken off the pump and slowly weaned down to a lower dose of morphine and oxycodone for pain along with a bevy of other medicines for other things. I owe my thanks to Dr. Patel for stepping in on my behalf, without his intervention, I would have had no memory whatsoever of my hospital stay and I would have undoubtedly faced a terrible transition when I was sent home. More important, I was finally able to participate in my own treatment plan. I was discharged on June 30th. I was unbelievably grateful to be going home, although a little trepidatious about leaving the 24 hour care I got at the hospital. Over the next couple of weeks I would finish my chemotherapy and radiation treatments. Oh, how I looked forward to those being over!
Another benefit of being home was that my friends felt more comfortable about visiting me. Not everyone came to my home to visit, but those who did were shocked by my appearance. In the short time since they had last seen me, I had lost nearly 50lbs. I was gaunt, remarkably pale and weak to the point where walking from one room to another in my house made me short of breath.
Once vibrant and curvy, I was now a mere husk of that former vivacious example of liveliness. The only things it seemed cancer hadn’t been able to touch were my zest for life and my sense of humor. In spite of being so completely depleted in a physical sense, I would meet each day with enthusiasm and would plow through each treatment with determination.
A few weeks after my discharge from the hospital, my chemo and radiation treatments ended. I was so excited to be done. The chemo never really affected me negatively except to cause me hair to thin a bit and to make me tired. The radiation, on the other hand, was something I dreaded ever more as the weeks went on and something I will remember to my dying day. They claim you can’t feel the radiation, but I would argue that point vigorously. By the time the last appointment for radiation came, I just wasn’t sure I could take anymore. I had developed terrible radiation burns in an area where you would least likely want them to be. The burns suppurated freely all the time and were exquisitely painful.
I was supposed to be using the time after my treatments ended to build my strength and recover as much as possible, instead, I was tormented by pain from my burns. I began to feel even worse as I developed a systemic infection that caused my whole body to ache and caused a fever that came and went. I ended up spending the entire time between my last treatment and my surgery date on antibiotics. With the antibiotics in my system, my burns healed within days, bringing sweet relief from at least that one area of my misery. Although it was apparent that my tumor had responded to the treatment, at least partially, much of the damage it had already done continued to bother me. I had nerve damage that caused shooting pains down both legs and throughout my sacrum. I was still unable to sit or stand for any length of time.
On August 9th, I met with my surgeon to discuss the extreme surgery that would save my life but leave me forever changed from the woman I am. My surgeon was stunned by my lack of resistance to having a permanent colostomy. Having been told from the beginning that my tumor was too close to the sphincter to preserve function had allowed me to adjust to the whole idea long before it became a reality. The surgeon briefly explained the procedure and stated that my recovery should be a breeze because I am young and otherwise healthy.
I left the surgeons office feeling better than I had in months, both physically and mentally. My antibiotics had knocked back the infection that had been troubling me and I was excited to know that my surgery was scheduled for just slightly less than two weeks away. To have an actual date for the procedure made it seem more real. I didn’t think of the surgery in negative terms, rather I focused on knowing that after that date I should be cancer free. My birthday was the next day, but I felt like I had gotten my gift early!
The next two weeks were a roller coaster of ups and downs. After my outing on the 9th to meet my surgeon, I was feeling spry enough to clean house a bit. I was like a whirling dervish: cleaning and putting things in their proper places, gathering trash and taking it out to the dumpster, doing laundry and coloring my hair. The next day I was feeling a tad worn out but it was my birthday and I had been so excited to be going out to celebrate it with my best friend that nothing could have prompted me to cancel. Dinner was a joy, we dined at my favorite Thai restaurant and my bestie surprised me by having some of my other friends join us. The only thing opposing the night’s festivities was the fact that, in my excitement to go out, I had forgotten to bring my pillow to sit on. We managed to get a booth where there was at least a suggestion of padding, however, my discomfort grew throughout the evening. Determined to milk out every drop of fun from my birthday celebration, I stayed out much longer than I should have. When I got back home, I wanted only two things: my pain meds and my bed. Much later that night, my daughter returned home from work and began to pack her bags for a long overdue visit to see her fiancé. I stayed up to see her off to the airport and then collapsed into bed for some much needed rest.
Fast forward to the next Monday and there was no doubt remaining; my infection was back. I had a fever that was unrelenting, and I was having chills combined with profuse perspiration, I was achy and just generally unwell. My best friend was very concerned and thought I should to the ER. She had watched both of her parents battle cancer and was familiar with the compromised immune system I had after all of the chemo and radiation but I insisted that I was fine. Wild horses couldn’t have dragged me to that hospital again because they would have determined that I be admitted since there was no one at home to take care of me. I was already scheduled to see my oncologist on Wednesday; my fever could wait.
Fast forward yet again to Wednesday, the doc agrees I’ve got an infection somewhere alright. He sent another prescription to the pharmacy for antibiotics. This time he instructed that he wanted me to continue taking them clear up to my surgery. Having antibiotics in my system again improved my symptoms and made me feel a lot better physically at least. As my surgery date neared, I began to be increasingly apprehensive about it. For the whole length of time leading up to my surgery I really hadn’t ever been scared, but for some reason I was now, but in for a penny, in for a pound. I was determined and I had made the decision to go ahead with the procedure long before, I wasn’t going to back out over these transient, last minute megrims.
On August 22nd, I underwent the massive operation that was my only hope of being NED (No Evidence of Disease). The procedures I was to have were an Abdominoperineal Resection with a partial posterior vaginectomy, a lower bowel resection and a permanent colostomy placement. In laymen’s terms, all those fancy words translate to this: they cut out my entire rectum so that they could be sure that all of the tumor was removed, they sewed my bottom shut leaving me with what many call a “Barbie Butt”, then they removed a significant portion of my vagina and the last section of my colon. I was set up with a colostomy bag where my stool will exit my body for the rest of my life.
This gigantic surgery took a major toll on my already depleted body and I ended up staying in the hospital for 16 days fighting one complication after another. I had multiple infections, I couldn’t eat and I was in constant pain, none of which was fun for me or for those around me. My bladder failed to resume function, which led to its own little medical nightmare. I was finally released and sent home with a Foley catheter that I fully hope will be removed when I see the Urologist again. Packed and ready to go home, I sat and waited (rather impatiently) for my daughter to come and get me.
I saw my oncologist the very next day and he went over the pathology report from the surgery. All in all, he declared the operation a success, however there were residual “pools” of cancerous material that they were unable to clear. I am looking at 4 months of intense chemotherapy and scans every 3 months. I will begin my chemo on October 3rd if I am strong enough.
While the doctors are hopeful that they can declare me NED (No Evidence of Disease) once I have finished these last four months of chemo, they plan to be quite vigilant in their monitoring of my cancer by continuing to scan me every three months. With an aggressive cancer like mine, close observation is a must. My oncologist gave me odds that my cancer has a 30 – 40% chance of recurrence in the next 3 years. I prefer to think of it as having a 60 – 70% chance that I’ll stay cancer free!
In the end, adjusting to the colostomy has been the easiest part of my recovery. I have been changing it myself since I woke up with it after surgery. Of course, I had a WOC Nurse to walk me through the steps the first couple of times, but I did all of the work. Joining the online support groups before I had my surgery really helped me prepare mentally for having a colostomy. I learned what others were having the most difficulty with so that I could research that problem and see if there was a solution. What struck me as most interesting was the role that attitude played in how other folks were adjusting to having a colostomy. For those who could look at the bag as a symbol of healing, adjusting to this new life was easier.
I would recommend to others that if having a permanent ostomy is even a remote possibility, learn as much as you can about it! Knowing what you’re facing and that you aren’t alone can make a huge difference in how you adjust.