I am determined to live my LIFE...NOT my disease. The following story is about my experience with cervical cancer and why the issue of cervical cancer prevention is of the utmost importance to me.
While I may never know why I was led down this particular course of life, I recognize that what I have been given is a gift of life and one I was not likely supposed to have received. Because of that, I plan to take every opportunity presented to me to make the most of it. I plan to do what I can, when I can, to help others avoid the same journey that fate has placed me upon and for those who find themselves on it with me, to demonstrate to them that they, TOO, can overcome it and emerge just as victorious as I am today. At least that is my wish.
The wish to help prevent even just one other person from experiencing what I did is also one of the major reasons that I became a local chapter leader for the National Cervical Cancer Coalition. This organization has provided me with the great opportunity to reach out and speak to women and men, teen boys and girls throughout my community, to help raise awareness and provide support. In addition to my chapter duties, I also volunteer with such organizations as Inspire and Immerman Angels, mentoring those women diagnosed, re-diagnosed, or those who reach a point of discovery that they need someone to talk to, someone who can relate to their personal experiences and emotions. I participate in an online support group with two other wonderful ladies diagnosed with different stages of cervical cancer; one pre-cancer and the other stage II. Together, we had found that there was not a lot of mentor support available for women with this particular type of cancer. Amazingly, this group, when implemented had only 500 members and has now grown to over 50,000!
You can only imagine, with all of this contact, the types of stories I have encountered. All just as different as the women sharing them. And all deserving of being heard. I would have to say that the one thing that hits me hardest about this disease is the stigma and shame so often expressed and felt by these women because of this disease and its affiliation with a sexually transmitted infection. It is heart-wrenching to hear those things said to these women by those closest to them; partners, spouses, friends and other family members, and this is by those who do not abandon them at their greatest time of need. These women have such tremendous strength, courage, and will to persevere. It is, yet another reason I retain such resolve in educating the public about HPV and its truths and relationship to this disease. Isn’t cancer hard enough to deal with, without the addition of shame and stigma? Women should not be forced to try to seek treatment for this disease while also trying to hide the fact that it exists. They should receive nothing but the same level of support and encouragement as any person facing their own life threatening ailment. Yet, such is not the case. It is for all of these women and those whom I have known and lost, my “Teal Sisters” that I will continue to do what I do, to continue my fight, but mainly to help us all come to a better understanding about this disease and help there be one less woman facing this in the future. If I can do that, then EVERYTHING I have been through, or may yet go through, will have been worth it. It is my sincerest hope that my sharing this today will serve to help you in some way as well.
As you will read, my journey to a cervical cancer diagnosis and treatment process was long and complicated. I am writing it because I have learned so very much along the way, information I want to share with other women so that the story of my fate need NOT be yours.
The truth is, YOU are in complete control of your health, whether you know it, like it, or want it. I believe if more women recognized the importance of their well woman check-ups and made a conscious effort to schedule and keep them, and used EVERY tool at their disposal, we could very likely one day see an end to cervical cancer. Can you imagine?
But sadly, far too many of us suffer from misconceptions and false truths when it comes to this cervical cancer and screening. I find that the top five reasons women most often give for opting to not have their annual check-up are:
1. Being in a long-term monogamous relationship or having only one sexual partner;
2. Not currently being sexually active or a long absence from sexual activity;
3. A decision to not have or to stop having children;
4. Post- menopause; and
5. Not displaying symptoms or complications of having anything wrong
These reasons are false, false, false, false, and false. The truth is...if you have EVER had sexual relations, even if with only one partner, you are at risk for HPV (Human Papillomavirus) infection and, thereby at risk for cervical cancer and need to be tested. Only your doctor should determine when this testing can stop or be delayed. Until that time, like the mammogram for our breasts, HPV and Pap testing remain routine in our lives. We would not choose to forego our mammograms simply because we felt okay, would we? Of course not. And so we should use every tool available to make our overall health our top priority. We will never have a stronger advocate for it than ourselves.
The CDC says that each year in the U.S. approximately 12,000 women are diagnosed with cervical cancer; and 4,000 will die from it. While these numbers may seem low in comparison to other cancers with plague the female population, one number which should stand out about this disease is 100. 100 being the percentage of cervical cancer cases which are preventable with proper screening and by vaccinations made accessible to young women today: Cervarix, Gardasil and Gardasil 9. Cervical cancer stands out from the majority of other cancers as it is one for which over 99% of cases has a known cause; that cause being the virus, HPV (Human Papillomavirus). HPV also just happens to be the leading sexually transmitted infection present in over 50% of the sexually active adult population; with an average 80 MILLION currently infected and another 14 MILLION estimated to be diagnosed this year alone. HPV is unlike many other STIs in that it does not require actual intercourse or penetration in order for it to be spread as it is not spread via bodily fluids but by mere skin to skin contact, which accounts for its high rate of infection. There are over 100 strains of this virus, most, with the exception of those which cause warts, bodily and genital, the virus is asymptomatic, which is why it is so important to get screened.
The beginning of my journey to diagnosis -- a long complicated pathway.
It began in June 2009 as a simple "twinge" cramp like pain in the lower right quadrant of my abdomen/pelvis. I was 37 years old. Like so many of us are made aware, this is an age when "things" can begin to change in our bodies, hormones being one. So, although I had never previously experienced pre-menstrual cramping with my monthly cycles, I accepted graciously the fact that I was growing older and that nothing could possibly last forever. A few months later, not only was the pain a little more severe than in previous months, it also came earlier, lasted longer and was not controllable with any amount of medication. I decided it was time to see my doctor. I made the call and went in for a checkup. I was diagnosed with my first ever urinary tract infection (UTI). I know, you may have hard time believing that I had never had one prior to 37, but trust me...karma has more than made up for it these last 5-6 years. I was prescribed antibiotics and pain medications and sent on my way.
At first, all seemed to be great. The pain subsided and I returned to my regularly scheduled routine of running 5-10 miles a day and coaching my team of girls for the upcoming cross country season. A few weeks later, however, I was back in the doctor's office, complaining, yet again, of the same pain in lower abdomen. Again, testing revealed a UTI and another antibiotic was prescribed. This would happen one additional time prior to the next symptom presenting.
In October, 4 months later, I took part in an annual, local 5k run. The previous year I had been very successful, finishing 3rd in this event. This year, not so. I not only came nowhere near placing, I barely was able to finish the race and, actually, was not able to do so without walking; this coming at the first mile marker. Not what one would expect from someone who had been a runner since the age of 12 and had been putting in over 60 miles a week in training. When you have done something day in and day out for such a long period of time, you know when something is "off" even if it is the slightest thing, a thing which others, less familiar, would easily dismiss as nothing at all. Yes, even doctors. To me, this was not a small thing, but something that needed to be addressed by my doctor. I decided to go see my sports medicine doctor because I had also noticed a "limp" in my stride and some back pain during the race as well. We discussed the most alarming issue, the inability to perform at my usual level. He was quick to put my mind at ease by explaining that he believed it to be nothing more than my body recuperating from the ongoing infections and a reaction to the repeated use of antibiotics which are known to cause fatigue and loss of energy. He did further diagnostic test, but ultimately I was also told to lay off training for the next several weeks to avoid further injury while in physical therapy, and to allow my body more time to fully rebound. I happily complied.
By December, however, the pelvic pain was worsening and I thought it time to go see a specialist about it. So, I placed a phone call to a gynecologist. Unfortunately, they were not able to get me in for 8 weeks. In the meantime, I was diagnosed with yet another UTI and continued on the cycle of antibiotics and pain meds. I told you...I would make up for those years without one. Sad thing is, this is nothing of what was yet to come.
We are now entering into January 2010. This is when things started to pick up a little with new symptoms and severity of old ones. One evening while being intimate with my husband of 17 years. I was overcome with the most excruciating pain. Pain so intense that it warranted a trip to the ER. Of course, the sight of blood was also rather alarming. (If you EVER have discomfort or pain during sex with or without the presence of blood, please contact your doctor -asap...these are two signs/symptoms of cervical cancer. If I only knew then what I know now! Isn't that how it often goes?) The doctor at the ER, after hearing all that I had been through the previous 4 -7 months asked if he could perform a pelvic examination. I did not care what he did as long as he stopped the pain and could offer me some solution to my problem. So, I got undressed, draped the sheet across my legs and away we go...He took all of what seemed like mere seconds to examine me and then was "out" and peering at me from over the edge of the draping. He had a particular "look" about him. Anyone who has ever been witness to someone about to give you bad news, of any kind, is familiar with it. He told my husband, Jeff, and I that my cervix was bleeding and that I needed to get in to see my gynecologist asap. When I explained to him that I had an appointment for the following month, due to scheduling, he indicated that that was not good enough and that I needed to call them, explain exactly what he had just explained to me and if they were not able to get me in sooner, I was to call him directly and he would then intervene on my behalf. Okay, now I was worried...What the heck was wrong with me?
I called the doctor first thing Monday morning and told them exactly what the doctor had said and they had me in there in about a week. By that time I had received the results of the Pap test Pap test ( looks for abnormal cervical cells, a potential indicator of pre-cancer changes) and my pelvic exam performed in the ER and they were both negative. The doctor then decided to proceed down a different path and, thinking I had possible endometriosis, requested for a few additional tests that also came back negative. In effort to avoid an invasive exploratory surgery, the only true means to properly diagnose endometriosis, as I was informed, she opted for prescribing birth control pills. These, as she explained, had been known to greatly minimize the cramping and pelvic pain often associated with this disease. By March, after trying a chiropractor’s treatment tactics and other physical therapies I was still in pain and decided to up my game and, in doing so, sought out the aid of an orthopedist. Another x-ray was performed, which too noted the presence of arthritis... Wanting to also avoid unnecessary surgery, he opted for the use of a steroid and pain medication to treat. At this point I was on birth control, steroids, pain medication and the occasional antibiotic. I was to keep a dietary journal introducing one restricted food group at a time and notating how I did with each; allowing several weeks in between to allow my body time to process the new food intake. And, so, I did.
In March, after 6 months of repeated urinary tract infections and the continuing practice of prescribing antibiotics, hoping each time for a solution and not finding one. (Yes, believe it or not...I do know the definition of insanity- hahaha) I was referred to an urologist. Here I had my first ultrasound done of my abdomen and it was discovered that, for whatever reason, my bladder was not fully emptying. It was this stagnation of urine flow which was providing for the continued presence of bacteria laden urine in my system which was causing the repeated infections and why the antibiotics were not able to work. It also explained the newest symptom I had noticed, the occasional watery discharge. (Also a symptom of cervical cancer; known now...not then) I was informed that I needed to undergo pelvic floor physical therapy. Now, at 38, I have to admit that I had no idea what a pelvic floor was, let alone how one performs PT on it, but I met with therapist and for the next several weeks...I did pelvic floor physical therapy. The one good thing about this was that it could be done at home.
April and May of this year were pretty much more of the same old same old. I would occasionally go in for infection while completing PT, I would see orthopedist to tweak pain med and steroid as well as the chiropractor and continued with my diet as instructed. In June, I went back to see my gynecologist as it had been three months since I had started the birth control and she wanted to reevaluate and because of the continuing pelvic pain, she decided that she wanted to perform her own pelvic exam and . . Again, the results were negative but, she did change my birth control pill.
Had I known then what I know now, which is that the Pap test is known to have a 30% fail rate, I would have requested, no DEMANDED, that an HPV test be performed, as well. While both tests are performed using the same tissue specimen, only the HPV test can detect the presence of the virus necessary for the development of abnormal cells and ultimately cervical cancer. I have no explanation as to why this was not done other than to assume that, with all prior tests results being negative it was “assumed” that I had no such infection. This is an incorrect assumption and a dangerous one for anyone to make. The truth is, I fit into the perfect criteria, at the time, to have this HPV testing performed. I was over 25 and was, and had been, sexually active. That is it! Quite simple, really. If you are over 25 and are or have ever been sexually active (in any way) you are at risk for HPV and should demand the test to determine so. Even if with only a single partner, you are at risk. Who knows, had this test been performed at this time some of what was to follow may have been avoided. And, what was to follow was quite extensive.
We now enter July 2010 and this is where things really begin to get interesting. It was Sunday morning and as had now become a morning ritual, I was progressing through my early morning routine of stretching exercises, necessary to get out of bed. I was lying on my right side, extending my left leg into the air, stretching it as wide as I could, desperate to get the "pressure" off of the spine, hoping to feel and hear that "POP." While I moved, rolling from side to back and toward the other side, I could not ignore that not all of me was cooperating. The circuit from brain to torso to hips to right leg was complete, the signal was getting through, but somewhere along the way, the signal to the left leg was not. There it lay... draped across my right leg, still and limp...no movement at all. I immediately called for Jeff and I, personally, cannot say for sure, but the tone with which I did so must have been one of panic and fear for that is exactly how he responded...as if I was dying. I demonstrated to him what was wrong and try as I might...I could neither move, bend nor lift my left leg. It was paralyzed.
Fortunately, the next day I was able to get in to see my orthopedist. This time his outlook was not so positive. The x-ray performed that day revealed that I had, in fact, shattered three of my vertebrae. Surgery was no longer avoidable. I was scheduled for surgery the following week, July 21st, 2010.
Now, ordinarily one would not necessarily be expected to remember the date of a minor, non-invasive laparoscopic lumbardectomy and, honestly, if this was all that happened that day, I doubt I would have either. But, I remember thinking that, finally, in a short period of time this pain that had been plaguing me for so long would be over. I would be able to return to my "normal" life again. This pain had already side lined me from so much. Months before I had been forced to quit coaching my middle school boys' track team, right before their big regional meet because of the severity of the pain. I had had to quit my part time job because of my inability to sit for long periods of time. Nothing was normal. This surgery provided me hope that it could be so again. It could not come soon enough!
We approached the patient drop off where my mother was waiting for me with a wheelchair to deliver me to the admission's desk while Jeff parked the car. I was wheeled to the second floor and sat as she filled out all necessary paperwork. Here is where things get a little fuzzy. I remember sitting there. I remember feeling "odd" similar to that feeling one gets when standing too quickly after kneeling or sitting too long; as if the room is spinning and everything around you is fading away. I tried to steady myself by glancing around the room, eagerly searching for something to focus on but everything seemed to fade away, I could see people but I could hear nothing. I remember redirecting my attention up towards my mother and calling out to her, telling her that "something was wrong" and beginning a fall to my right and then....nothing. When I awoke I thought I was in a dream. I learned that I had suffered a grand mal seizure and had lapsed into a coma. Jeff had come into the admission area to find me surrounded by a team of doctors and nurses frantically trying to figure out what had happened. I was wheeled away where they performed scan after scan and noted an enormous amount of fluid built up on my brain and during which time they had to resuscitate me three times.
Needless to say, I did not have my back surgery. And, I am sure you can see why I will never forget this date as long as I live. Nor will I forget the words spoken to me by the doctor when he came to discharge me from the hospital. After placing me on 11 medications, the three to four I was on when I came in, I left the hospital on various anti-seizure medication, beta blockers, blood pressure meds, potassium, magnesium and others I cannot completely recall, it was not this that bothered me, it was what he said, after prescribing all of these new medications that did not sit right. His words were that he was discharging me because I "was too healthy to be in the hospital and he could not justify keeping me in there." Word for word. My husband, looking at the heart monitor which still indicated that my blood pressure was above normal limits, questioned whether this was the correct move to make and was told that I was "within normal limits” and he felt "positive that the medication would work to keep it that way." I was instructed to follow up with my neurologist who had been monitoring my stay to ensure that I would not suffer from any permanent brain damage and to see that the fluid retention subsided. It would be on his okay that would enable me to undergo my needed back surgery. We returned home to "wait and see."
The following month I visited this neurosurgeon. He performed head scan and all fluid was gone and I was perfectly "fine" according to his area of expertise and he cleared me for surgery. My back surgery was performed August 24, 2010. Because of the length of time that had lapsed between discovery and surgery, the procedure was not as cut and dry as had been expected. When the doctor got in there he noted that more pieces of my spine had broken off and were floating up in the spinal canal, rendering it much more risky and invasive. I was made to remain in the hospital overnight for observation. It was here that I noticed my next symptom. I had risen in the night to go to the restroom and noticed that, instead of a nice steady stream, my urine was gushing out of the center of my vagina, like an overturned bucket of water. I wasn't sure how to properly describe it to my doctor, but I knew it did not look "normal.' I wondered if it could be the result of the surgery and was assured that it was not and that if it continued to go see my regular gynecologist. It did and so...I did. I described it exactly as I did here and it must have sounded confusing as I recall, vividly, looking over in his lap at my chart where he had written the words "vaginal urination" and next to it a huge "?' He directed me across the street to a urologist that afternoon. My mother helped me over to the appointment where a second ultrasound was performed. This time, this new urologist came into the room wearing that same "look" mentioned earlier. He proceeded to tell my mother and I that he had discovered a "mass." It was a rather large mass, approximately 6-8 cm in size, from what he could tell. Although, because of its location, he was unable to determine if it was on my cervix or my ovary. His advice was to get in to see my gynecologist as soon as possible. Here we go again. I explained that I had just seen her, three times and the last time being less than two months ago. His only response was that this mass was solid and I needed to see her as soon as possible. And, so I did.
I called that afternoon and was in to see her within the week. I explained to her what the urologist had said. And, as I sat there, fully clothed, she proceeded to tell my mother and I not to worry that she did not believe I had cancer. She had me lie back on the table and began to press on the lower left side of my abdomen/pelvis. Odd, since all of my pain had been on the right, but whatever. Immediately she felt it with an "aha...there it is" and asking me if I wanted to feel it as she took my hand and placed it upon my "mass" pressing it down so I could feel the source of all of my last year and two months pain and problems. Repeatedly she proclaimed that it was not cancer. As my mother grew more and more upset with the mention of this word, forcing her to leave the room as my doctor followed her out to "console" her and returning, informing me that it was her desire to go in and surgically remove it. However first she explained, she wanted me to meet with a surgical oncologist, simply as a means of "precaution". It was someone she wanted present simply in case she found something surprising when she opened me up. “Oncology”... ”surprise”... ”..wait a minute, I thought you said I did not have cancer..“ was my basic response to all of this new news now being laid out before me. Her response was, yet again, in the affirmative that she was positive “I did not have cancer.” Taking her at her word, feet hanging over the table, swinging carefree back and forth, I placed a call to Jeff to give him the good news. I returned home to continue recovery from back surgery and to await my appointment with the oncologist and subsequently scheduled surgery.
I Beat the Odds to Survive Terminal Cancer – to Celebrate “No Evidence of Disease”!
Here again, I believe fate was on my side. For, instead of undergoing surgery to remove the suspicious, unknown "mass" found in my abdomen, I wound up unexpectedly back in the ICU, this time after suffering an apparent grand mal seizure as I sat discussing the evening's football practice with my 12 year old son and lapsing into yet another coma; this one for seven days.
At least this time there was some understanding of what was going on. My husband Jeff had pleaded with the doctors to go in and remove the mass while I was already laid up in the hospital. His logic was around reasoning that I had already done half the work for them, I was there and I was unconscious, all they needed to do was operate. He even went so far as to call my gynecologist and let her know that I was, again, in the ICU and asked her to call him back or to come and see me...although we neither saw nor heard from her again. The hospital did solicit for one of their resident gynecologists to come and have a look at me. It was then that we heard not only did I have cancer but that it was inoperable and was stage IV, and it was terminal. As hard as it was for him to say it, it was just as hard for my husband to comprehend it, denying all of the time that it was me they were discussing, certain it was someone else. After all, I had just been told I did not have cancer and had been seeing doctor after doctor for over a year. How could this be possible? Admittedly, the doctor stated he did not have an answer. He described cervical cancer to Jeff as a very slow growing cancer and one, by his best estimation, that I had had for a long time. When Jeff explained that I had just undergone a Pap test in June and asked how it was missed, the doctor admitted he had no idea and did not want to answer for my regular gynecologist but, in his nearly 25 years of practice, it was the worst case he had ever seen. It was so invasive, in fact, that he could not perform a biopsy as he feared I would bleed to death on the table. But he also described that a confirmatory diagnosis it was not necessary, it was obvious what it was, there was no denying it; he could see cancerous tissue was everywhere. In his best estimation I had six months to live, if I was lucky. He advised Jeff to look at placing me immediately on palliative care to make me as comfortable as possible, for as long as possible. This doctor who finally diagnosed me also placed a call to an area specialist to come in and take a look at me. This area specialist, Dr. W., remains my gynecological oncologist to this day. After evaluating my condition, Dr. W decided he wanted to try to treat my condition, but to do so I had to be stabilized and transferred to his hospital. It took about a week but I was finally able to do so. The first thing I did when I arrived at T.J. Cancer hospital was undergo the Da Vinci exploratory surgery to amass the complexity of my condition and remove 28 lymph nodes to look for presence of cancer. Fortunately, there was none. However, it was noted that the cancer was greater than they had originally suspected. It had begun invading my bladder, colon and vagina and was not only on the left side, but was advancing across the right blocking both ureters to my kidneys, causing loss of function of the left kidney and working on doing the same to the right one. The following day, I was flipped over and had my first of stents and nephrostomy tubes inserted into my right kidney. This was necessary if I was to have any hope of being able to undergo chemotherapy and radiation. I was then fitted for my radiation "suit" and we met to discuss my course of action.
I would undergo 5 weekly sessions of chemotherapy in conjunction with 30 daily radiation treatments to be followed up with 5 brachytherapy treatments. It would be wonderful to say all went according to plan, but when does it ever? Besides being admitted into the hospital for recurrent infections, more often than not MRSA or other complication with tube in my kidney, by the second week of treatment, I also began to succumb to the treatment itself. I began to lose my ability to eat or keep anything down and by week three I had lost a lot of weight. So much so that it was decided to place me in the hospital, more than once to receive intravenous fluid and sustenance. By the end, of treatment my 135 muscular frame was a 95lb wraith. Being nearly 5'11, you can only imagine what this looked like. I spent the months of treatment not able to look at myself in the mirror and it was only much later that Jeff admitted he had the same difficulty. By week 4-5 he was having to dress me himself, pick me up and literally carry me into each and every treatment session. He was and continues to be my rock.
After chemo and radiation was completed I began my internal radiation/brachytherapy treatments. Initially it had been decided that I would have 5, however, the presence of a fistula had made it too risky for two of them to be performed due to the close proximity of the radiation rod to other internal organs and risk it posed to them. So, in all, I went through 7 procedures with only five of them being beneficial. If you have experience with these, you completely know what I mean. The discovery of this fistula also laid to rest another issue I had discovered during one of my frequent hospital stays; one in which I began expelling a nasty, foul smelling substance from my vagina. It was initially believed by my radiation oncologist to be evidence of my necrotic tissue, dead and being expunged from the body but, we now knew it, at this time, to be fecal matter which was being passed through this opening that passed between rectum and vagina. I will describe no further.
On December 7, 2010, an entire year and a half from that very first symptom, I completed treatment I was sent home to allow my treatment time to continue doing its job and I was to return in three months for my first follow up appointment. This took place in March 2011. A week later, however, I was called back to go over the results. Apparently, something suspicious was detected. Go figure, right. I have two Pap tests done when I have cancer and nothing is found, I have one performed after treating the cancer to kill it or at minimum shrink it and it shows up with abnormal results. Anyhow, he decided to perform a colposcopy in the office and the results came back positive, the cancer was still present. What next? That was the question. We sat across from Dr W as he laid it all out for us. At this point there was truly only one option he felt provided me any chance of a "cure" and that was a major surgery known as a Total Pelvic Exoneration. It was extremely radical. It would call for the removal of all of my reproductive organs as well as the removal of my bladder, a good portion of my large intestine and my vaginal wall. In place of my bladder a urologist would remove a portion of my small intestine and use it to construct a "neo bladder", a colostomy would be created to replace the removed colon, and a plastic surgeon, using muscle and skin graft from my leg would construct a new vagina. The latter not always performed in this surgery, but because of my young age and being married it would help to ensure that intimacy could be continued. Sadly, it did not. Vaginal stenosis, being a common side effect of this particular operation set in, mainly due to my frequent visits and stays in hospital prohibiting my repeated "use" of it. It definitely is one of those...if you don't use it, you lose it, situations. I lost it. Jeff has been amazingly understanding.
Before I could undergo the procedure I had to meet with all of the doctors who would be taking part in the operation as well as having another PET scan to ensure that the cancer had shrunk enough in size to enable surgery, was localized enough in the center of the pelvis and had not invaded my pelvic wall. It was performed, it had, it was and it had not. Surgery was scheduled for May 27, 2011 and lasted 16 1/2 hours. I awoke the next morning to Dr W. present at my bedside explaining to me that it had been a success. While the cancer had, once again, begun to invade my colon, he was still able to obtain those all-important clear margins and I was FINALLY N.E.D. No Evidence of Disease!!! May 27th is now celebrated as the day of my second birth.
Following this surgery I have still undergone numerous other surgeries. In November of 2011 I underwent a procedure to reverse the colostomy. I awoke the next morning to a familiar sight and smell, immediately determined to be fecal material passing through another fistula; one missed by the colonoscopy I had undergone prior to procedure. My fever spiked at 105 as I went septic from this occurrence and I was rushed in for emergency surgery to replace the colostomy, this time for good.
On Dec 24th of 2011 I suffered a prolapse of my intestine when a lack of abdominal integrity proved incapable of keeping my stoma in place and like a pair of socks being turned inside out on themselves, so did my intestine. Not sure what was happening, I phoned my doctor, in Oklahoma at the time for the holiday, and was directed to go to the ER as he believed I was experiencing a hernia. Here they discovered the prolapse and gave me directions on how to push the intestine back inside my abdominal wall. I tried, but it was not successful for long and such is how I spent the next year of my life.
While I was to have undergone a surgery the following spring to repair it, I was sidelined by another emergency surgery to remove my gall bladder which was discovered to be on the verge of eruption by a nurse who just happened to be looking over my chart one night while I was there on one of my frequent stays for suspected MRSA/UTI infection. When nothing was showing in urinalysis or blood work, she made the inquiry as to whether anyone had ever looked at my gall bladder. They had not, but did the next day and that was when the stones and inflammation was discovered. I was in surgery that afternoon.
The surgery to repair the stoma took place that November 2012. It resulted in a huge gaping hole in my abdomen approximately 3x2x3/4" surrounding the stoma. The constant presence of fecal matter made it extremely difficult to heal and I had to keep it packed with sterile gauze which made the adherence of the necessary appliances to hold the bag in place impossible. I constantly suffered, what we in the ostomy world call "blow outs." You can gather from the name what they are. They became so regular and unpredictable that for the next year or so, I became home bound; afraid to leave my home for fear of having these occurrences happen in public. They had already happened with friends, at dinner, in the car, on dates with Jeff, and more than once in the grocery store. I could not cope with them any longer. The situation became so frustrating at times that I punched a hole in my bathroom wall and just wanted it all to be over with. The amazing thing is that the only time I think about it now is when retelling my story. It is almost like a second lifetime ago, almost like it never happened at all.
For the next 9 months, I thought I was finally on the road to recovery POST cancer. I did not suffer another infection, the tubes had been removed from both of my kidneys. (They had been inserted, removed and reinserted about 6 times in each throughout the period) and I had no hospitalizations. I began to believe that all of this was behind me. At least it was until this past January. Wanting to do something to bring attention to cervical cancer and HPV, the number one cause of all cervical cancer cases, I was setting out to undertake a survivor's challenge. In line with my past as a runner, I had set out for myself to take part in a 5k each month of the year, in some fashion; walking, biking, or...skating. This is what I was doing this particular day in Jan. I was on lap 23 of 27 to equal the 3.1 miles when, trying to avoid running over a small girl about to take a spill in front of me, I made a move to get around her, caught my left skate on the ice and down I went. I knew as soon as I had done it, although I did my best to deny it, telling all who came to my aid that I was fine and only needed a moment to recover, knowing all too well this was not the truth. Yet, in my head I was saying over and over..."it is just a bruise...it is just a bruise." After what seemed like forever, I finally made the move to stand. I placed my left foot upon the ice and _____ down I went. So, I tried again _____splat! There was no avoiding it now, I was helped off the ice, crying and cursing myself the entire time. Jeff had warned me not to go. I had already broken an arm two years before while jumping rope with my youngest daughter, who knew what I would do ice skating. I suffered a dislocated hip and a fracture of my upper femur. So, yeah...there was that. I now have three screws permanently holding my left hip in place. It acts up from time to time, but as I know all too well from working with other women who face this disease, it could always be worse. Yes, I suffer and will continue to do so from chronic renal failure, my left kidney being all but completely necrotic at this point in time and my right suffering from hydro-nephrosis. Yes, I have three screws in my hip which, I am told, will prohibit from my ever being able to run again; a large part of my past and of huge importance to me lost forever. Yes, due to bags, risks of infections and other considerations simple tasks such as bathing in a tub, swimming or soaking in a hot tub present severe challenges to be and are advised against. Yes, it will remain impossible for me to ever be able to engage in marital relations with my husband again. Yes, I will forever have three vertebrae fused together causing pain and discomfort for the rest of my life. Yes…there will be a rest of my life. And, finally, NO…I will NEVER give up! I will NEVER surrender! I am a survivor and that is what we do…we SURVIVE! In some manner in some way, we will do whatever is required of us to rise up to meet the challenges that may lie ahead. If we cannot go over them, we go through them, if we cannot go through them, we go around them; anything and everything thing to emerge victorious. This is what I did as a runner it is what I will continue to do in everything in life.
If your life has been touched by cervical cancer in some way, we want to hear it from you. Your personal story can help us inspire others to get tested for cervical cancer or cope with the cervical cancer diagnosis.