Boy, for me to give full detail would require much more time than most would want to give to read. I will, however, try to get as much of my story as possible and do so in a manner which will enable you to retain interest and still acquire education and knowledge to help you avoid my same fate. The latter being my ultimate endeavor as I work to spread awareness about HPV and cervical cancer.
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. I popped into my local convenience store, purchased an OTC medication and went on my way. The next month, same as the one before. Then came August. 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 spent the entire week of our family vacation in a drug induced fog, popping Ibuprophen, Acetomenophen, Pamprin and Midol like M&Ms. Nothing worked. It was at that time that I decided it was time to see my doctor. When we returned home I made the call and went in. I was diagnosed with my first ever urinary tract infection. I know, many 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 antibiotic and pain med 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 uti and another antibiotic was prescribed. This would happen one additional time prior to the next symptom presenting.
In October, 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. Not only did I come no where near placing, I was barely able to finish the race and was not able to do so without walking, this happening 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. The other issues he proceeded to take images and diagnosed me as having early on set arthritis in lower spine and a 3/4" leg length discrepancy most likely accounting for the pain and the change in stride. I was started on PT and prescribed a wedge to wear in my shoes. I was also told to lay off training for the next several weeks so as to avoid further injury while in PT and to allow my body time to fully rebound. I did.
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 mean time, I was diagnosed with yet another uti and continued on the rinse and repeat 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 at the time, 23 1/2 now) I was overcome with the most excruciating pain. One so bad that it warranted a trip to the ER...then and now. 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 dr asap...these are two signs/symptoms of cervical cancer. If I only knew then what I know now. Isn't that how it goes?) The doctor at the ER, after hearing all that I had been through the previous 4 -7 months asked if her 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/pelvic exam performed in the ER and they were negative. The doctor then decided to proceed down a different path and, thinking I had possible endometriosis, requested the performance of a vaginal ultrasound and CA-125 blood work. Results for both were 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. Jeff and I found it amusing that 12 years after his vasectomy, following the birth of our youngest of five children, I was once again being asked to use this means of birth control. At this point, we had to find amusement wherever and whenever we could.
As I said previously, the beginning of the year brought about rapid development of new symptoms and worsening of old ones. The previous accounting was of the pelvic pain, but also continuing was the back pain and utis. As we were now in February of 2010, my birthday month and in honor of this, for my birthday present, my parents purchased for me one of those tilt tables. You know, the ones where you, somehow, strap yourself in by your feet and then, throwing caution to the wind and forsaking all sense of self preservation thrust yourself backwards, hoping upon hope that you manage to stay strapped in and in doing so emerge, upside down, nothing from preventing you from dropping upon your head to the ground below except those two velcro straps secured around your feet. Amazingly, though, it worked wonders at alleviating the pressure off of my lower spine. There I would hang, my Elvira, vampiric self, day in and day out; as often as I possibly could. It was with this method of self treatment that I decided to give chiropractics a go. I went in and had the initial evaluation performed, which included an x-ray. The result of which was early on-set arthritis of lower spine with some pelvic rotation and hip variance, most likely due to having children and placing them on one hip vs the other to rest. (If you have small children and do this...STOP..apparently it is very bad for you, in the long term) He also diagnosed the leg length discrepancy and prescribed a new shoe wedge as well as therapy. Having been a skeptic of their services in the past, I was, at this point, desperate enough to give anything a try. Obviously, I mean, I was hanging like a bat. Besides...I now had TWO doctors confirming the same diagnosis...I was getting somewhere. Or, so I thought.
I proceeded with treatment for the next few weeks and it did appear to do some good. At least I began to feel better for the first few days following treatment, just in time for the next one. lol
By March, however, these, too, had ceased working and I 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...three for three..woo-hoo. 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. You can imagine the havoc this was having on my digestive system. It did not know whether it was coming or going, often times quite literally.
In fact, it had progressed to such a point that I would spend days on end suffering from one form of gastric distress or another. This ranged anywhere from periods of diarrhea to constipation to black stool to pencil thin stool. My medicine cabinet was constantly stocked with stool softeners, laxatives, suppositories, and pepto or other form of diarrhea control substance. At its worst, I was having to perform physical action to enable myself to have a bowel movement. I will spare you the complete details of this. Eventually it reached the point where it was advised that I seek advice from a gastroenterologist. He diagnosed the symptoms as being solely related to the various medications i was presently taking. The pain medication being responsible for the constipation, which could then lead to the pencil thin stool; the antibiotics for the diarrhea, a fact I was well aware of by this point, and the medicines i was using to treat both for the others; pepto for the dark stool, etc. His advice was for me to minimize foods which could lead to and/or worsen the conditions, at least until I could come off of the medication. This meant no dairy/cheese to help with constipation, no sweetened foods , whole grains, and/or fresh/raw fruits & vegetable for the diarrhea, as well as spicy foods. 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 a 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 PAP smear. Again, the results were negative but, she did change my birth control pill.
July 2010- This is where really begin to get interesting. It was on July 11th. I am often asked how I can so accurately recall this date, as well as others. My response..."there are some things you just CAN'T forget." I remember because my family was at my in-laws for a late 4th of July celebration. 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." If any of you have ever experienced that sense of pressure or need to crack a knuckle or joint, you know that "pop" I am speaking of. Wider and wider I stretched until..."POP" I felt it and heard it. I would have thought the entire house to hear it as loud as it sounded to me. But, at that moment I did not care...as instantly as it occurred I just as quickly became aware of the fact that there was something different about this particular popping sensation. As I laid there I began to feel a strange "tingling" sensation creep from the top of my spine down to my toes, but it was something more than that...the pain...every bit of it was gone! I could not believe it. Uncertain as to what had happened, I began to search my mind for any sensible explanation, as anyone would. At that moment the best I could come up with was that I must have had a pinched nerve and that the pop had released it from wherever it had been trapped and so, ended my pain. This was nothing more than a fleeting thought for, as soon as I made a movement, eager to go in and tell all of my new found freedom from pain, I became astutely aware of how wrong I had been. 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 laproscopic lumbardectomy and, honestly, if this was all that happened that day, I doubt I would have either. The reason I can remember it is because this surgery /was/ supposed to have taken place. It did not. I remember the drive to the hospital as if it were yesterday. It was a beautiful, Virginia summer morning. Not too hot, cool enough to drive with the windows down, but it was 6:00 am. I remember looking out of the window and finally 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. Jeff was to my left and to my right sat my mother in a wheelchair telling me she would be right back. I had no idea what had happened. I had no idea it was 10 days later. I would later, much later, learn 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. The source of the seizure, fluid build up and coma had been my blood pressure soaring to a high of 205/130. What had caused this spike...that was something different, altogether. The reason my mother was at my bed side in a wheelchair was due to her suffering a mild heart attack when witnessing me seize and collapse. She was actually in the ICU unit in a room down the hall and was on her way to have a test done when I awoke. It was also at this particular time that I was given the news that I had tested positive for MRSA in my urine. I told you those utis would catch up with a vengeance. ;)
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 bp 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 and he made no qualms at expressing his displeasure with this ICU dr nor his refusal to perform a CT scan of my kidneys, the one thing he and the hospital nephrologist had suspected being the root cause of everything I had endured. 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. The day before my eldest daughter and child's 18th birthday. 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 over night 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 dr, 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 dr. 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 appt 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 6-8cm 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 asap. 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 asap. 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. (which as far as I know, is all that happened) and returning to tell me that she wanted to go in and remove it but wanting me to meet with an surgical oncologist as a "precaution" someone she wanted present in case she opened me up and was met with a surprise. Oncology...surprise...wait a minute, I thought you said I did not have cancer, was basically my response. Or, some form of that. Her response was again in the affirmative that I did not have cancer. Taking her at her word, feet hanging over the table, swinging back and forth carefree, 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 appt with the oncologist and scheduled surgery.
Again, fate was on my side. For, instead of undergoing surgery to remove this suspicious, unknown "mass" I wound up back in the ICU unit. This time suffering a 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. Jeff pleaded with the doctors to go in and remove this thing while i was there. His logic was that I had already done half the work for them, i was in the hospital and I was unconscious, all they needed to do was operate. It was not his actual thinking, but it was somewhat along those lines. He even went as 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...we neither saw nor heard from her again. It was then that the hospital mae the request for one of their resident gynecologists to come and take a look at me. Which he did, while my husband went to lunch, September 8,2010...two days before my middle child and eldest son's 16th birthday. When Jeff returned from lunch he was met by a team of doctors standing outside of my ICU room. The gynecologist approached Jeff and began to try to tell him what he had discovered. Jeff has admitted to me, only some of what was discussed at this time. For one, he does not like to fully reflect upon it and two, he does not want me to know everything that was said at that time. What I have learned is that the doctor struggled to give him the news; having never met him before and knowing neither one of us, I can only imagine how he felt delivering the news that I had cancer and 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 Jeff 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, I had had for a long time. When Jeff explained that I had just undergone my PAP in June and asked how it was missed, the dr admitted he had no idea and did not want to answer for my doctor but, in his nearly 25 years of practice, it was the worst 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 that it was not necessary , it was obvious what it was, there was no denying it, it was everywhere. In his best estimation I had six months to live, if I was lucky and Jeff needed to look at placing me immediately on palliative care to make me as comfortable as possible for as long as possible. All of this, as you might imagine, was more than Jeff could bare and he searched frantically for some outlet for his anger. This must have been obvious as the doctor had security come and help him from the building. You see, Jeff is 6'3 and 260lbs. They wanted to make sure their hospital remained intact.
When he regained his composure he began to discuss the issue more rationally and with this is was decided that this doctor would place a call to an area specialist to come in and take a look at me. When I came to, I knew immediately that something was up. Everyone was present, and I mean everyone; Jeff, my kids, my in-laws (including Jeff's brother and wife, who NEVER go to the hospital) my parents, my brother and another, very tall rather distinguished graying man. I would later discover that this man was the doctor called to come and evaluate my condition. The man who remains my gynecological oncologist to this day. I vaguely remember someone telling me, at this time, that I had cancer, but I could not tell you who it was or what exactly they said. To be honest I am not sure if this is a subjective memory which I have inserted knowing what happened or if it did, in deed happen. Not that it would matter, I was so drugged, you could have told me anything and it would have mattered not one iota.
After evaluating my condition, it was decided by Dr W. that 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 davinci 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.
It was decided that 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/brachy therapy 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 5 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. Initially my radiation oncologist believed it to be tumor being killed off and expunged, but we now knew it to be fecal matter which was being passed through this opening that passed between rectum and vagina. I will describe no further.
On Dec 7, 2010 an entire year and a half from that very first symptom I completed treatment and rang my bell. "Ding-a-ling-a-ling." Not that I could ever forget that date, but it just so happened to be my father's 58th birthday and he was present to witness me come through all of that and this was my gift to him.
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. Nothing memorable about this date. A week later, however, I was called back to go over the results. Apparently, something suspicious was detected. Go figure, right. I have two PAPS 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. Anyhoo. 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 NED!!! May 27th is now celebrated as the day of my second birth.
Following this surgery I have undergone numerous other surgeries. In November of that year 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 that year 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 dr, 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/uit 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. 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 them 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 story. 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. In Feb of this year, however, I had been diagnosed with hyperthyroidism after noticing some strange heart palpitations, dizzy spells and constant fatigue and other symptoms. I was prescribed a medication and set to be rechecked in a few months. This follow up revealed that my thyroid had swung in the opposite direction and I now had hypothyrodism. (yes, I am a walking encyclopedia of medical terminology and conditions) My friends will often come to me for advice for symptoms before calling their own dr. lol I was given a new medication, most likely too high of a dose because in Sept of that year I wound up back in the hospital after that long absence. Initially I had thought it to be a stomach virus brought home by one of my kids. There was pain, cramping, nausea, and vomiting. When I could not keep anything down, even water, I knew it was time to go in to the ER. They discovered that several of my levels were "suspicious" and admitted me to the hospital straight away. It was discovered through further testing that my digestive tract had entirely shut down and steps were taken to get it jump started again. I spent the next two weeks on a TPN (feeding machine) The evening prior to my discharge I was given a final dose of reglan, a medication for my system which caused a seizure like allergic reaction. One which had me coded and tachycardic...again...and had them wheeling me down to have a head CT performed and placed in the neuro ICU overnight. Eventually it was discovered that it was a simple adverse reaction and I was advised to try to stay away from reglan. ;)
I went home and for the next 15 months, once again was lead to believe that all was behind me. That was until this past January. Wanting to do something to bring attention to cervical cancer and HPV, the # 1 cause of all cervical cancer cases, I was setting out to undertake a cervivor's challenge. In line with my past as a runner, I had set out for myself to take part in a 5k every 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. But ever the stubborn, obstinate, pig-headed (if you want) person I am, I was determined to live my LIFE...NOT my disease. Isn't that what we always told? Well, I lived it alright! All the way up to suffering 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.
Despite all I have been through, and you can see, it has not been uneventful, I still consider myself one of the lucky ones. I am not supposed to be here to tell you this story. Every day, to me, is a gift that I am more than lucky to receive.
To show my appreciation for this gift, I became a local chapter leader for the National Cervical Cancer Coalition and do what I can, when I can, to spread awareness about this disease, its signs symptoms, the facts about HPV and the means we now have available to us via the HPV vaccinations to PREVENT spread of this #1 sexually transmitted infection and with that PREVENTION of the various cancers, besides cervical, closely associated with it; vulvar, vaginal, anal, oral/throat, and penile cancers. I serve as mentors to those women newly diagnosed with various stages of this disease and hope that my story can serve as source of hope and inspiration that no matter what may lie ahead of them on their journey with this disease, they CAN overcome it. Through various support groups, online and local, I have had my share of encounters with women facing this disease. Unfortunately not all with the same outcome as I have been, so far, been blessed to have. It is more for these women, my "Teal Sisters" that I continue to do what I do. I continue my fight, not solely for myself, but mainly for those who no longer can; to keep their memory alive and their experience with me forever.
It is my sincerest hope that this sharing will serve to help you in some way as well.