To Healthy to be Sick

by SparkMedia
April 11, 2016  | 

It was June 2009 and I had taken my 5 kids to visit my husband at the beach when I experienced my first “twinge.” I was 38 years old. Admittedly, I had never been one of those women who had experienced problems with their “cycles” but I was aware that as we aged, things can change so I made a pit stop at local convenience store to pick up an OTC
medication. When all was well again with the world, I thought nothing more of it. The next month when it returned it was wash, rinse and repeat. Again, problem subsided and I began to think that karma had finally caught up with me and  all of those years I had been fortunate to not experience pains were now coming back to haunt me, in full force.
Then came August. Not only did the pains come earlier than expected, but they also were not treated with any form of medication and they did not they also were not treated with any form of medication and they did not they also were not treated with any form of medication and they did not they also were not treated with any form of medication and they did not they also were not treated with any form of medication and they did not subside when my cycle was over. My family was on vacation at the time. What was supposed to be a fun packed time of family togetherness at Myrtle Beach is simply a blur. The only thing I can remember is popping pill after pill and trying my best to stay awake as my husband and kids took part in the various activities the city provided. Nothing more, nothing less. It was then that I knew something had to be wrong and made the decision to get in to see my dr when we returned home. In Sept 2009, I made my first trip to see my primary care physician and was diagnosed with my first, of what would be too many to count, urinary tract infections and placed on my first antibiotic, ever. I take that back, I had been on one other antibiotic in high school when suffering an upper respiratory infection from running cross country, but other than that…I had been the picture of “perfect health” (if such a thing actually exists) Having been an athlete since the age of 6 and an avid runner since the age of 12, there had not been a day when I was not partaking in some form of physical activity. I ran at least 5 miles every day and when not running, I was now involved with coaching high school and middle school cross country and track. This activity would come into play in a major way, for the good and the bad. So, here I was on antibiotic and it seemed to be doing the job. Of course, it could also have been the vycodin I was given for the pain. 🙂 Anyway, I was able to return to my normal routine; something I had not been able to do the month before because I felt entirely too blah. I began running again and training for a 5k I was competing in the following month.

This brings us to October. The pain returned and with it a return trip to dr. Yep…here we go again. It was then that I learned that once you experience one, you are highly susceptible to them in the future. Although I do not believe when they came up with that conclusion they did not have in mind the frequency with which I (or anyone with CANCER) would experience them. So, I competed in my 5k and for the first time in my life, not only did I not perform up to my level of performance, but I had to stop and walk…very uncharacteristic for me, someone who had finished third the year before. If any of you have ever done anything with such consistency, you know that you are the first to know when something is “amiss” and you are not performing at your optimal level. This was that sign for me. I immediately went to see my sports dr who did not seem too concerned. He chalked it up to the fact that I had been suffering with infections and on antibiotics which can play havoc on your bodies and drain one of energy. A lesson I have come to learn all too well, but at the time was really a newb and took him at his word. I did tell him that I had noticed another issue on my “run” and he set me up for an x-ray and examination. The x-ray showed early signs of spinal arthritis and a slight twist in my spine so we set up for me to begin a few weeks of PT as well as a recommended wedge for my leg length discrepancy. (Diagnoses #2 and #3 for symptoms…back pain) So the routine of back pain and utis continued for the next several months, leading met to the new year. In January I would experience what should have been the “ding,ding,ding” of all symptoms. While engaging in intercourse I suffered the most severe pain I had ever experienced in my life. It was so bad that I made my husband take me to the ER. Yes, it was that bad.

Talk about “sex sent me to the ER” It was here that the examining dr asked to do a pelvic exam and my response was a very simple “do what ever you need to do to make it go away. The exam took all of seconds until he was looking up over my sheet draped knees with a “look” I am sure many of you know that “look” the one that says something is wrong, but he is not the one who should be the one to tell you. He told me that my cervix was bleeding and that I needed to go see my gynecologist asap. He proceeded to perform a PAP smear and said he would have the results in about a week, but that I should try to get in to see her before then. I explained to him that I had already been in contact with her to ge!t in, regarding the pelvic pain and that the next appt was not for another 4 weeks, to which he responded that I needed to call her and tell her what he found and that if they could not get me in before then, he would place a call on my behalf. Okay…what the hell was going on? I called my gynecologist the next day and they had me in that week. I explained to her what the ER dr had said and she performed her own pelvic exam and PAP and said that she saw nothing of concern. She believed that perhaps it may have been “bruised” or something but that at this particular time there was nothing that was alarming and that we would await the PAP results to confirm. I then explained to her about all of the pelvic pain I had been experiencing since June of the previous year and she scheduled me to have a vaginal ultrasound. The vaginal ultrasound was performed two weeks later, oh yeah, both PAPs came back normal, so we proceeded down another path. She believed that I had endometriosis (diagnosis #4) and to avoid an unnecessary surgery to confirm, she placed me on birth control pills to help with the pain. This brings us to Feb of 2010. With no one thinking the conditions were the same I was continuing to treat my back pain which had continued to worsen. So much so that for my birthday on the 2nd, my parents purchased me on of those tilt tables to help alleviate the agony. In addition to this home remedy, I made an appt to go see an chiropractor. He confirmed the initial diagnosis of arthritis and spinal rotation and leg length discrepancy and set me up for weekly treatments. They seemed to work, a little…just in time for next week’s appt; funny how that happens. hahaha We are now in March and in addition to the pelvic pain and the back pain I was continuing to suffer from urinary infections. So often, in fact, that my primary dr felt it time that I see a urologist. So, here we go…dr # 5 in my journey. An ultrasound was performed, oh yeah, vaginal ultrasound was all clear, and this next one revealed that my bladder was not fully emptying. (diagnosis #5) and I was scheduled to begin pelvic floor physical therapy. Now, at this time I had no idea what a “pelvic floor” was, let alone how to do PT for it, but I met with the therapist and do it, I did…for 8 weeks. In the mean time, I began experiencing yet another symptom. This time it was gastric in nature. I would have bouts of diarrhea, constipation with or without the appearance of pencil thin stool, which may or may not need assistance with rectal pressure being asserted in order to get it to pass. I was caught in a routine of popping immodiums to using suppositories to taking laxatives depending on the bowel habit of the day. I was also beginning to notice that I was filling full very quickly. I mean, two bites of a hamburger and I was done. I began to joke with my husband that my stomach must have shrunk because I could not hold any large amount of food…at all. Not having ever been what one could call a “big eater” and having been slim of build my entire life, I mean I was 5’11 and weighed in at 130lbs this was not too alarming, but I did notice. the change. I brought this up to my dr and he suggested that it was most likely due to the various medications that I had been on f! or the past several months. Each one having its own varying effect on the gastric system. He recommended that I see a gastroenterologist just to confirm, since I was having such varying conditions and (I think) to ensure that there was not something more sinister at work. The gastro dr performed a “scope” and did not see anything alarming and wanted me to change my eating habits for potential case of IBS (diagnosis #6) and to keep a food journal of what I was eating and to start by eliminating all foods which could cause similar reaction and if I was okay to slowly add one group at a time to see which may be the trigger. I was also recommended to start taking a daily probiotic.>We are now into March/April of 2010 and the back pain was continuing to worsen with chiropractic therapy not really working, I made the call to an orthopedist (dr #6) Another x-ray confirmed previous diagnoses of arthritis and spinal rotation/tilt and leg length discrepancy. Well, at least there was that…3 out of 3…maybe we were onto something. Not wanting to do surgery if we could avoid it, he placed me on a steroid and pain medication. So, I was currently on antibiotic, birth control, steroid and pain medication  and had achieved 6 different possible causes as we come to the 1 yr point from when it all began. Oh, somewhere in there I had been told that I possibly could have had colon cancer, due to the bowel issues, but this was ruled out when another uti was discovered. It was also, most likely, one of the reasons I was referred to gastro dr. I do not recall exactly which visit it was, but I remember being extremely upset by the dr asking of family history and alludin! to the possibility, given my on going problems, without doing necessary testing and diagnosis first. Anyhow, we are now into July 2010 and my family was at my in-laws for the 4th of July weekend on the weekend of the 11th. By this time, I had established a regular stretching routine to enable me to get out of bed each morning. I rolled onto my side and began to stretch, beginning with the left leg; lift straight up to the side…”P O P” Whoa…what the heck was that? I heard it maybe before I felt it or maybe vice versa but all I knew next was that in an instant…all of my back pain was gone. I rolled flat onto my back and relished in this euphoric feeling. It was as if millions of tiny electric pulses were running up and down my spine. As I lie there, enjoying this greatly welcomed sensation, my mind began to search for an explanation. While it may sound ridiculous, the best I could come up with was that I had been suffering with a pinched nerve and in that instant, the spinal pressure was released and the nerve unpinched and “voila” I know…probably not physically possi! ble on any account, but in that spontaneous moment, it was the best I could muster. I say, spontaneous because as I turned onto my back to experience to relief from pain I also proceeded to roll onto my left side to rise and exit the bed. It was then that the “AHA” came into play. Actually, it had occurred as I made the move to roll onto my back, but it was all happening at the same time that it is hard to explain it in that way. But, as I went to roll onto my back to be followed by a roll onto the left to exit the left side of the bed…my left leg remained in its straight position…flat on the bad, like a limp noodle. I tried to lift it…nothing. I tried to bend it…nothing. There was no mobility in the leg at all. Panic now set in which must have been evident in my voice as I called my husband because in 18 years of marriage, I had never seen this 6’4 240lb man move so fast. 🙂 He came running into the room and I guess my face must have been showing that something ser! ious was wrong. We packed up and returned home that afternoon. I could not get into see my orthopedist for another 2 days. This time the x-ray would show that surgery was  no longer avoidable. I had shattered three vertebrae. There was no explanation given as to how this could have been possible by a simple stretching exercise, but I did not really push the issue. I was scheduled for July 21, 2010. This is where things really begin to head south in a hurry. *Thank you for sticking with me this long* It was a beautiful, sunny morning as we headed to the hospital. I remember it well. I remember the ride there, I remember being dropped off where my mother awaited my arrival with wheel chair in position as my husband went to park the car. I remember being wheeled to the second floor registration room. I remember sitting there watching as my mother filled in the paperwork and I remember, as I sat there, becoming suddenly aware that something was happening to me. This is where it gets a little difficult for me. I can still recall the sensation with perfect clarity, it is finding the right words to describe it where i encounter the difficulty. It was like, as I turned to look around the room, everyone there began to fade into the distance. I could see people talking, but I could hear no words, no noise of any kind. It was sort of like that moment when you stand up to quickly and get real dizzy and that moment after taking a sleep inducing drug all at the same time. I looked up! at the nurses station and remember calling out to my mom that “something was wrong” as I began to slouch over to the right side of thechair and then I remember nothing.  What happened next I can only recall chair and then I remember nothing.  What happened next I can only recall as it has been told to me. First, my husband arrived to see me surrounded by half a dozen nurses. I was rushed into a separate room where he was rushed out when they were compelled to resuscitate me three times. When I was “stable” they rushed me into an exam room where they proceeded to monitor my blood pressure, which at highest was 205/160. I was then rushed for an MRI of my brain, which showed that I had suffered a grand-mal seizure and severe amounts of fluid had filled up my brain cavity. I was in a coma. I awoke several days later, 10-to be exact, to see my mother sitting at my bed side in a wheel chair. I would come to find out that when she witnessed me seize, she had suffered a mild heart attack and was actually in another ICU room down the hall from me. I saw a team of doctors in the ICU as they tried to determine what had caused the high blood pressure  and seizure. No youtwo able to come up with any decisive and/or conclusive diagnosis. Finally, with the help of several medications, 2 anti seizure,2 blood pressure, potassium, magnesium, calcium, beta blockers, as well as the 4 I was on originally, I was discharged from the hospital. I will never forget the day this happened. There stood the dr at the foot of my bed asking if I was ready to go home, as I had been here 13 days now. My husband asked if it was okay, as my bp was still a little above normal and we still had no real explanation as to what had happened. To which the doctor responded that he could not justify ke!

eping me there as I was “too healthy to be in the hospital.’ Yes…his
exact words. I can hear them in my head to this day. So,…home I
went…on 12 medications (remembering that I went in on 4) but I was
“healthy.”
I had strict instructions to follow up with the neurologist who had seen
me in the hospital so that I could be given the “all’s clear” to enable
me to have my back surgery. Yes, this had to be postponed so I still had
no movement in my left leg. The big fear, at this point, was that I had
suffered so much fluid on the brain that I would have permanent brain
damage. In a month, the neurologist ruled this out, but my husband has
his doubts. hahaha  He also made the inquiry as to whether or not the
ICU/hospital dr had ever done the CT of my kidneys, one of the causes he
and a nephrologist had both suspected could have been the underlying
cause of all of my problems, bp, fluid, seizure and coma. I told him that
it was not and he was, let’s just say, a little less than pleased and
made no qualms about expressing his true feelings about this dr, openly.
However, he cleared me for back surgery.
August 24,2010, the day before my oldest child’s 18th birthday, I
underwent back surgery. Unfortunately, so much time had passed between
the initial incident and the surgery that it was made a little more
complicated and an outpatient procedure resulted in an overnight stay.
While in recovery, I made notice of an unusual occurrence when using the
restroom. Where our urine is supposed to exit the body in a nice straight
stream, mine was coming out as if it was pouring from an overturned
bucket. It was literally Niagara Falls between my legs. When I got home I
made a call to my dr and he directed me to come in. I tried my best to
explain to him what was going on. I could tell he was not getting it and
a quick glance at my chart which indicated “vaginal urination with a huge
‘?”” told me I was right. He sent me directly across the street, that
day, as it was less than 2 days from my spinal surgery and he did not want to waste time, to have an x-ray and ultrasound performed. This would be the second time I would experience that “look.” The urologist
came into the room telling me that he had found a “mass” and telling me
that, because of its size and location, he could not determine if it was on my ovary or my cervix but that it appeared to be solid and I needed to
go see my gyno asap. Man…here we go again. I went home, called my dr
and told her receptionist what I had been told. They had me in that day.
Now, I had also placed a call to her when I got home from the hospital
after having read online that certain combinations of steroids and birth
control can lead to seizures. Yes, not having received a satisfactory
answer, I was doing some self diagnosing. I was told to cease the birth
control asap. This may also be why they got me in the next day.
My mother took me to this appt, the last week of Aug. I told her
everything that had transpired since my last visit. She left the room to
review my chart and came back in with a copy of the ultrasound. Her next
words to me were that she “did not think it was cancer.” Cancer? When the
heck did cancer ever come into the equation? No one, until this moment
had ever said the word cancer. She looked at my two PAPs from earlier inthe year, as well as my pelvic exams along with the vaginal ultrasound
>and said again, “don’t worry, it’s not cancer.” Again with the “C” word.
>With that, my mother began to lose it. Both her mother (cervical) her
>father and brother (lung) had died from cancer as well as two sisters had
>battled cervical and breast cancer and she had her own bout with serious
>questionable “cysts” at 28 prompting a hysterectomy and here I was. The
>dr turned and again tried to reassure her that it was “not cancer.” I was
>tired of hearing that word..if it was not cancer, sto!
> p saying it!! She proceeded to have me lie back on the table, still
>fully clothed, and began probing along the left lower quadrant of my
>abdomen and pelvic area until she came in contact with it. “Here it is”
>she said. ” Do you want to feel it?” and with that, she took my hand and
>had me press down upon that thing which was trying its damnedest to kill
>me. ” Can you feel it?”
>”Oh, yeah” I said. “I can feel it. What is it?”
>Here she stumbled a little and I think at that point my mother knew what
>she was thinking and fled the room. The dr followed her and there I
>was…my “mass and me.”
>They both returned after a rather short time and the dr admitted that she
>was not 100% certain what it was, but that she wanted to schedule me for
>surgery to have it removed asap since I was experiencing so many
>”problems.” Yeah, I guess you could say that.
>I was told that I needed to wait about a week to get everything arranged
>and to allow me a little more recovery time from the surgery I had just
>had the week before. She also wanted to consult with a surgical
>oncologist as a “just in case” scenario so that she was not caught off
>guard and that there would be someone there who could deal with it, if it
>turned out to be cancer. Wait a minute..what happened to the half a
>dozen…”it’s not cancer.”?  The surgery would most likely take place in
>mid September.
>I returned home and began the full recovery and pre-op position.
>My husband and I had taken up residency on the sofa bed downstairs as I
>was not able to climb stairs for several weeks. I was sitting up on this
>bed enjoying a tv show with my son and discussing his evening’s football
>practice when…LIGHTS OUT!!!
>Yep, it happened again. I had suffered another seizure and was in another
>coma. This time, thankfully, we had a little more information to go on.
>My husband told the ICU/ER doctors about the recent discovery of the
>”mass” and the plans to remove it. He begged them to go in and do so,
>since it was causing me such problems. In his mind, half their work was
>already done for them…I was unconscious and in the hospital…all they
>had to do was operate. lol They decided to call in the hospital’s
>gynecologist who arranged to come down and see me the following
>afternoon.
>While my husband went to lunch that September 9th (the day before my
>oldest son’s and middle child’s 16th birthday) the doctor came into
>examine me. Again, this is told based upon what information I have been
>able to get out of my husband throughout the past few years. This time it
>would be my husband who experienced the “look.” He saw the doctor outside
>of my ICU room, surrounded by a team of new doctors and could not figure
>out what was going on. The dr approached my husband with that
>”hesitancy.” Many of you are familiar with it, I am sure. He tried to
>find to words, but admitted that he did not know how to proceed. He told
>my husband that this was the most difficult situation he had ever been in
>throughout his entire 20+years in the business as he did not know my
>husband from Adam. They had never met, not even before going in to
>examine me and the news was not pleasant. He proceeded to tell Jeff (my
>husband) that I had cancer. For a second, Jeff was relieved as he felt c!
> ertain he was talking about another woman. After all, I had seen dr
>after dr and had test after test and less than a week agi I was told I
>”Did NOT have cancer.” The doctor explained that he had no explanation as
>to what had transpired the previous year or the week before but there was
>no doubt, I had cervical cancer and it was the worst case he had ever
>seen. He then went on to tell him that he did not know how it had been
>missed, as it was everywhere and was , in fact, so bad that he could not
>perform a biopsy as doing so would most likely result in my bleeding to
>death on the table. But, that, in all honesty, it was not necessary.
>There could be no doubt  that it was cancer. Then he delivered what he
>said was the “worst” of it. He then told my husband that my condition was
>so severe that there was nothing surgical that could be done. I was in
>the last stages of this disease and that I would have 6 months, a year if
>I was ‘lucky’ to live and that it was his best recommend!
> ation to place me on palliative care to make my final months a!
> s comfortable as possible. As one might expect, my husband “lost it”
>needing to be escorted from the hospital by security so as to not cause a
>disturbance and destroy things, as he admits he was looking for anything
>and everything to throw.
>When he calmed down he proceeded to discuss my condition with the dr who
>explained that he had placed a call to a particular gynecological
>oncologist to see if he would come and take a look at me. He was not 100%
>certain that he would or could as he did not have privileges at this
>particular hospital but given my age and overall “good health” he wanted
>to make sure everything possible was being done. At some point that day
>this dr had made the necessary calls and came after his evening rounds,
>near midnight, to come and see me. I owe my  being here today to the
>actions of this dr. After looking at all of the information and taking
>into account my personal history, family and (cancer aside) overall
>health, he made the decision that he wanted to proceed with further
>examinations. *Remember I said at the beginning that my “health would
>come into play, both for ill and for good. Well, now you know why I did.
>When I finally came to it was to a room full of family and this very
>tall, rather handsome greying new dr. I vaguely recall someone telling me
>I had cancer, but I am not sure I took it to heart as it did not phase me
>in the slightest. How many can say that? Maybe everyone should be told in
>such a manner, minus the whole seizure and coma thing, of course.
>After being discharged I came in to see Dr. West and he began to discuss
>what the next step would be. It was at this time that I would hear, for
>the first time, the prognosis my husband had been given. Six months?
>Umm…I don’t think so and I said as much. I did not let it phase me…I
>am very stubborn like that. Besides, my dr had made it clear that it was
>his mindset to, not only treat this cancer, but to “CURE IT.” Yeah! That
>sounds more like it! Besides, he was so confident in this possibility
>that it was contagious and that, in combo with my personal obstinate
>personality, was all that was needed to proceed. So, we began with a
>hospital admittance to get me scheduled for a davinci procedure to
>determine exactly what it was we were dealing with. Finally, we would get
>to see what it was we were dealing with. The cancer, which it was, had
>grown to such enormous size that it had been blocking off the ureters to
>both of my kidneys, virtually destroying the left one, entirely!
>  and quickly working on doing the same to the right. The next day I
>would need to be flipped over and have my first, of several, stents and
>nephrostomy tubes, inserted. This would be what sustained my kidney
>function as I went through treatment. It was also determined that the
>cancer had made its way down into the vaginal canal and was working its
>way into the colon and bladder as well. But it was not so advanced that
>he felt chemo was not a voluble solution. The positive news that came out
>of this scan was that, despite the severity of the stage of the
>cancer…stage IV cervical, it had not made its way into my lymphatic
>system and that was key if chemo/radiation was to have any chance of
>working.
>I began treatment in October 2010; 5 weekly doses of Cisplatin with 30
>daily doses of radiation therapy. This would be followed up with 7 brachy
>therapy sessions.
> I was now battling the last stages of cancer and it began to show.
>Before treatment was started, I was in severe pain. So much so, that  in
>a journal I had been keeping, I discovered afterwards that I had wished
>for death to come and take me to alleviate the pain I was in. I was not
>sleeping well at all. I was waking in the middle of the night, repeatedly
>and having to soak in a scalding hot bath to try to ease the pain.
>Usually with little success. Treatment could not come fast enough.
>Although this sentiment would not last long.
>Unfortunately, I did not respond well to treatment. As is the case with
>so many, I found it difficult to eat or drink anything. I quickly lost
>weight; going from my “healthy” 130 down to 95 lbs in the first 2 1/2
>weeks. My radiation oncologist sent me to my oncologist for labs after
>one visit which resulted in a hospital stay to receive fluid and
>nutrition prior to my next day’s radiation therapy. While in this stay, a
>trip to the restroom resulted in a very unpleasant experience. Upon
>rising from the seat, a sudden “gush” of  material spewed onto the floor.
>It was very nasty and foul smelling and I began, immediately to try to
>clean it up as i was extremely embarrassed by it. While in the middle of
>my cleaning, a nurse came in and took over and scolded me for my efforts.
>But, had you been there and in my place, I am sure you would not want
>another to be responsible for this “mess.” I told my dr about it at my
>appt and he felt inspired by its appearance as he felt it evidenc!
> e that treatment was working and that it was the appearance of the dead
>tumor being expunged from the body. Good Lord, if that was a “part” of my
>tumor, my tumor was /huuuge/ It would turn out that this was, in fact,
>not a tumor but had been evidence that my cancer had created a fistula
>between my colon and vagina and the “mess” was not tumor, well some of it
>may have been, but the majority of it was fecal material that was exiting
>my body through the hole in the vagina before reaching the rectum and
>anus. This would proceed off and throughout the course of my treatment.
>If my bowels were solid, it would pass normally, but when not, which is
>most often the case with chemo and radiation, it would pass through
>vaginally. Needless to say, I did not go out much these few months. In
>addition to the weight loss, I also suffered frequent infections with my
>stent and kidney tube. More often than not, it was a case of MRSA; having
>first been diagnosed with it in July, at time of the!
>  first seizure, I have actually had this particular staph infe!
> ction over a dozen times and continue to battle it off an on, to this
>day. My one “fortunate” experience through all of this has been in
>learning that of all strains of this staph I am “lucky” in that the
>strain I have is responsive to Bactrim and is treatable. Yet, I must
>monitor my usage of this particular antibiotic so as to not develop a
>resistance because the result could be less than favorable for a future
>infection. These infections often resulted in hospitalizations as well.
>Throughout the course of my first several months of treatment the
>hospital became my second home away from home. I believe I was actually
>there, more than I was at home.
>Then came Dec 7,2010 (my dad’s birthday) the day of my last radiation
>therapy and I got to ring the bell. I was surrounded by everyone
>important to me to mark this milestone that we were not sure would ever
>arrive. I was sent home to wait and see. I know you all know that
>process. I returned to “coaching” my youngest daughter’s basketball team;
>more of an honorary position, as my brother and dad had taken my place
>for me and I resorted to keeping score, which was just fine with me.
>The next three months passed by quickly and before i knew it, it was
>March and I was in for my first follow up appt. Dr West performed a PAP
>exam and I went home to await the results. In less than a week I was
>being called back in to have another procedure performed, a colposcopy,
>and awaiting the results of the biopsy. The results were less than
>favorable, cancer was still present. Either the treatment had not been
>successful in getting rid of all of the cancer or I had suffered
>immediate recurrence. Either way, we had to now determine how expansive
>it was, so another PET was ordered.
>The scan was done and cancer was confirmed. I knew when I received a note
>from the nurses with scan, acknowledging how trying the waiting period
>can be. You know when you get that “feeling” this not gave me that
>”feeling.” While the cancer was present, the good news was that it was
>isolated in the center of the cervix/pelvic area and was not in the
>pelvic wall. Our next step at this point was to proceed with a major
>surgery, known as the Total Pelvic Exenteration. Further chemo would not
>suffice and there was no more radiation that could be done.
>I had this surgery on May 27,2011…the day of my second birth; three
>days before my 19th Wedding Anniversary, which would be spent in the
>hospital as it would take nearly 4 weeks for me to recover from this
>major operation. During this 16 hour procedure I would have a team of
>various doctors performing various procedures on me. It started with my
>oncologist removing all of my female organs, along with my bladder and a
>good portion of my colon and left vaginal wall, along with all of the
>cancer (which by the time the surgery was performed had already begun
>advancing back into the colon and bladder. A fast moving sucker) At this
>point he turned it over to a urologist who removed a good portion of my
>small intestine and used it to create a fake “bladder” located behind my
>belly button, which would serve as my entry point for catheterizing to
>empty this new pouch. When his part was completed, it was then handed
>over to a plastic surgeon who took muscle and skin from my left leg!
>  to construct a new vagina. This is not always done in this procedure,
>but because I was still relatively “young” and married, it was thought
>best to help ensure that I could carry on marital relations with my
>husband. Sadly, thanks in large part to treatment, I have experienced
>vaginal stenosis and despite the best intentions and efforts, this is no
>longer possible for us.
>When he was complete, I was then handed back over to my oncologist to
>complete his task of constructing my colostomy to allow the bowels to
>empty.
>In the end I was hollowed out, from the waist down, about 10 lbs lighter,
>permanently and CANCER FREE!!!
>I awoke with tubes and drainage bulbs protruding from every area
>imaginable but ecstatic that for the first time, I knew I was going to
>”live!” After all, I was already past that initial “6 month” diagnosis.
>So…who says it is not good for doctors to be wrong? If there is one
>thing that I have learned, it is that NO ONE has an expiration date
>stamped anywhere on their body and that we CAN take control over those
>outcomes which otherwise may seem beyond our control.
>While I have no doubt that there were forces at work, beyond my
>comprehension and understanding that have made possible to overwhelming
>number of circumstances that paved the way for other actions to take
>place that all lead to where i was at that time, I also believe very much
>in the theory of “mind over matter.” Every day as I lied on the table to
>receive my radiation therapy, I used visualization to imagine those beams
>going straight into my body and piercing the tumor and destroying it,
>piece by piece by piece. The same was done for every chemo therapy, drip
>by drip by drip.
>Following surgery,  I returned home with a foley catheter in toe for the
>next several months as things healed. By this time, the nephrostomy tube
>in my right kidney had been removed and replaced with one in the left.
>The one positive is that I have never had two at the same time. 🙂
>I even went to an amusement park that summer and quickly learned that
>colostomy bags and roller coasters do not a happy couple make. I strongly
>discourage it…do not try it. 🙂 It was all I could do to keep it in
>place the rest of the day and I quickly learned, following this
>experience, the importance of ALWAYS carrying an extra change of
>equipment and how life saving a change of clothes and ostomy belt can be.
>:)
>In November of 2011, it was decided that my oncologist would try a “take
>down” or reversal of my colostomy. This had always been the plan, which
>is why we went for an internal bladder instead of two bags. With the
>hopes of returning me to a more “normal” external appearance. The take
>down went successfully, well until the next morning when I awoke to a
>familiar sight and smell. Recognizing right away what it was they called
>my dr and had him come examine me. Yep, I had developed another fistula,
>that or the portion of my colon that was removed had not included that
>portion which had contained the original, so I had to be sent in for
>emergency surgery to have the colostomy put back in as I had gone septic
>with a fever of 105.
>It was decided that we would try a medication to heal the hole and wait
>and see if we could try again at a later time.
>December 24,2011. ( I will try to speed things along, but so much has
>happened that it really does not seem like it is all remotely possible,
>sometimes) Although I was still recovering from surgery, I was determined
>to take my kids to get their annual Santa picture. This has been a
>tradition since the first was born.; all kids together, this year would
>not be different. Although, my body tried to make it so. I noticed
>something going on with my stoma in my colostomy. Suddenly, it began to
>swell and protrude from my body. I quickly called my dr as we had plans
>to go to the in-laws for Christmas and wanted to make sure this would be
>possible. It was his opinion that I was experiencing a hernia and told me
>to go to the ER, as he was in Oklahoma and I live in Va. In the ER it was
>determined that I was experiencing a prolapsed intestine and not a
>hernia. Basically, what it was is like a sock turned out on itself. The
>intestine was rolling out on itself and protruding from the bod!
> y. By the end of it, I had 6 inches of intestines hanging out inside my
>ostomy bag. The ER dr gave me instructions on how to push the intestine
>back into the abdominal wall, but unfortunately, it would not stay.
>So..out it stayed. The problem was that I no longer had any abdominal
>integrity to the muscle structure so it was not able to hold the stoma in
>place and i had to wait to have another surgery to repair it. This was to
>take place the next spring, after everything had time to heal.
>The following spring found me back in the hospital for an “infection”
>however, no infection could be found; no MRSA, no echoli, no, nothing. It
>was thanks to a very observant nurse taking time to review my chart
>during one particular night shift and thinking outside of the box to
>realize that I may have had an issue with my gall bladder. The next day,
>after bringing up possibility with oncologist, I was sent to have testing
>done and sure enough, not only was it full of stones and inflamed, but
>was so much so that it was about to rupture and I was rushed in that
>afternoon for surgery.
>
>Thank you to all nurses who serve as our Guardian Angels. I know I was
>sent mine that night. <3
>
>This put my colostomy surgery on hold and it was finally revised that
>following November, 2012. The revision was such that for the next three
>months I had a gaping hole in my abdomen approximately 3in long by 2 in
>wide and 3/4 inch deep. Because of its proximity to the stoma it made the
>application of ostomy equipment virtually impossible. I had to keep it
>packed with gauze and along with the “ooze” from the wound it was all I
>could do to keep a bag attached. I suffered terribly with leaks. This has
>been a problem for the prior year, as well, with the arrival of the
>prolapsed intestine. These “blow outs” would occur at any given time and
>at any given place. I had them while having a date night with another
>couple at a restaurant, in the car on a night out with Jeff, several
>times at the grocery store and just at home, sometimes requiring 3-4
>changes a day. It became so bad that I became a recluse and refused to
>leave my home for over a yr. Then came the revision. Same proble!
> m, different cause. I began to think this was how it was going to be for
>the rest of my life and I sank into a slight case of depression. Then
>finally, after three months of packing gauze and waiting it to heal from
>the inside out, it healed and with it the problem of “blow outs.” In
>fact, after nearly a yr experiencing this convenience and thinking that
>it was always going to be that way, I look back at it now and it seems
>like another lifetime ago. It does not even seem like it was ever a
>problem at all. In fact, the only time I think about it is when telling
>my tale. So…please know, that whatever you may be going through….keep
>on keeping on. What is need not always be what will be. We must keep
>reaching for that tomorrow and believing that with its arrival, all
>things are possible.
>Sadly, after the revision and its healing, it was determined that my
>rectal area had hardened in such a way that a reversal was now not going
>to be possible as I would have absolutely no control over movements, so
>the colostomy would now be permanent. Yet another new “normal” I have
>adjusted to.
>The next several months would find me with no hospitalizations or
>surgeries…a huge step in the right direction. However, it ended in a
>big way. It was September 2013 and i began experiencing severe stomach
>pains. Thinking it a bug my kids had brought home from school I thought
>nothing of it until I could no longer keep down water in addition to food
>and the pain became excruciating. I was taken to the ER where my levels
>were “suspicious” and I was admitted. It turned out that my hyper or hypo
>thryoidism that I had been diagnosed with in Feb of that year had been
>over medicated and the high dosage of medication had caused my entire
>intestinal tract to shut down. I was placed on a TPN feeding machine for
>two weeks while they tried to jump start it into activity. While starting
>one section, another would become overactive and so the routine
>continued. Finally, they got it all sorted out and my thyroid was finally
>ruled inactive and medication corrected. Then on the night befo!
> re I was to be discharged, a nurse brought in my last dose of Reglan and
>injected it directly into the iv going to my port. Within a few minutes,
>while on the phone with my in-laws, i felt a strange sensation in the
>right side of my face. At first, I thought I was imagining it, then it
>became more and more obvious as my speech began to slur. Recognizing the
>signs of a stroke, drooping facial muscles, slurred speech, etc, I
>panicked and hit my call button. The nurse, rushing in, immediately took
>notice of the symptoms and began performing the neurological testing. It
>did not take long to realize that it was not a stroke but was a definite
>reaction to the medication. My muscles began to spasm and convulse and my
>arms/hands began to move involuntarily and my legs would convulse when
>touched. I became tachycardic ,again, and i was coded and by the time
>Jeff arrived for his evening visit, he was met, yet again , by a room
>filled with ER nurses and drs. I tried to get them to tak!
> e him out of the room because I did not want him to witness th!
> is, yet again. And I felt even more strongly when they brought in the
>defibrillator. I thought, this was “it.” And, I could not put him through
>that again. He had just reached a “good place” after everything and now,
>here we were, right back where we started.
>Fortunately, they got things under control and I was wheeled down for
>another MRI of the brain and given more testing. I could not speak as
>every other word I would get stuck on one particular sound and stammer it
>over and over and over again unable to move past it and unable to stop
>saying it. I was conscious of what was happening, yet unable to stop it
>from happening. After the CT and MRI I was wheeled to the neurological
>unit for the night and hooked up to an EEG. I have a wonderful picture of
>me looking like Medusa with all of the wires running across my head.
>Fortunately, all testing would show that I had neither stroke nor seizure
>but just a very bad and severe reaction to the medication. Which was odd,
>because I had been on it for the entire two weeks, but it had been
>diluted through the saline and it was just that one final straight dose
>that set me over the edge. Who knew?
>2014, would be my best year since this whole story began. I had neither
>surgery nor hospitalization. It was then that I began to believe that I
>had finally turned a corner and was on my way to beginning life “post
>cancer.”
>Then came January 2015. After such a positive year, I began to believe
>that I could return to my life pre cancer. After all, what is it we are
>always told? Live your life, not your disease. Or, do not let your
>disease dictate your life. Or, we are only limited by that which we allow
>ourselves to be. Forgive me, but I took this to heart. So, I took my kids
>to the ice skating rink and was going to begin a goal I had set for
>myself to take part in a 5k a month to raise awareness for cervical
>cancer. Of course not running, but walking, biking, or skating. I was 24
>laps into my 27 lap event when it happened. I noticed a young girl whom I
>had noticed throughout the day falling regularly and knowing that I would
>not be able to stop in time and that if I continued on my present course,
>I was assuredly going to tumble on top of her. A fact, which I have been
>told several times since would have been far more favorable as she would
>have most likely bounced right back up, I, on the othe!
> r hand, because of my attempt to avoid her and catching the ice..was not
>so lucky. As soon as it hit the ice, I knew what had happened. Although,
>I sat there for some time denying it to myself. I refused assistance by
>several passers by knowing in my heart of hearts that I COULD get up, it
>was just a bruise. Then, finally I gave it the old college try and as
>soon as I placed my foot upon the ice and tried to stand, I collapsed.
>Again, the left leg could not hold weight. Again I tried and again I
>fell. Finally, I had to accept the help off the ice and it was at this
>point, as I sat on the bleachers that the endorphins began to wear off
>and the severity of the problem set in. I had experienced broken bones
>before. In fact, just the year before, yes,although 2014 had no surgeries
>or  hospitalizations, I had suffered a broken arm from jump roping in my
>driveway with my daughter. I had almost forgotten about that incident. I
>guess this is what happens when so many other things c!
> ontinue to go wrong. lol Anyhow, here I was experiencing that !
> same sensation and knowing I needed to get to the hospital asap Because
>my hospital was actually across the street from the ice skating rink, I
>decided not to wait on an ambulance and had my kids drive me over there.
>A mistake, which I realized when I arrived, but at the time made sense. I
>was wheeled back and after several attempts to get an x-ray, it was
>determined that I had suffered a dislocated hip and a fractured femur and
>now have three screws in my hip and a small rod in my leg to prove it.
>So much for the “severe contusion” that the initial ER dr had suspected.
>In his words, such consequences do not happen to women “my age” they are
>reserved for women much older when simply “getting out of bed.” (His
>words, not mine) Again, what is it with doctors and these preconceived
>notions of who can suffer what ailment and who can’t? lol I have
>seriously thought to wear a label on my clothing which reads…I have had
>cancer…please do not prejudge because of how I look now.!
>  It is like, because I refuse to allow cancer to dictate how I look or
>how I feel, it prevents others from seeing me as possibly being sick and
>it has almost cost me my life, more than once. So, if we are truly
>supposed to live our lives and not our disease, then we should not be
>prejudged by that decision to do so. That whole motto ‘Do not judge a
>book by its cover” pertains to so many of us who choose to be stronger
>than our disease and there is NEVER such a thing as being “Too healthy to
>be sick!!!” EVER! I
>
>In the mean time, I am out to prove to the dr who told me that I would
>never run again, just how wrong he is. No challenge is beyond my reach. I
>may have only one partially working kidney now, two ostomies , only one
>good leg and a fused spine, but what I also have is the determined spirit
>and belief in myself that ALL THINGS ARE POSSIBLE. So, what do YOU
>HAVE????