The Never Ending Story
Grab a chair and get comfortable, my story is a rather lengthy one. I will try my best to give you the abbreviated version.
It began in June 2009 while visiting my husband who was working out of town at the time. It began with cramping which I attributed to the onset of my monthly cycle. Although I had never been one who suffered with this symptom, I knew that as women aged our hormones changed and with that so could our symptoms of menses. When a stop at the local mini mart and a purchase of OTC medication remedied the situation, I had no cause to think otherwise. The next month brought the same issue and same resolution. It was the following month, August, that I began to suspect medical attention might be required. First the cramping came a good deal sooner than expected and the medication was doubled and sometimes tripled to control pain. My family was on vacation at Myrtle Beach and I can barely recall a minute of it as I was so drugged the entire time.
Upon returning home, I made a call to my doctor which resulted in a diagnosis of a urinary tract infection. I was prescribed an antibiotic for infection and medication for pain and sent on my way. Symptoms seemed resolved for a while, but the next month saw them return. Diagnosis, UTI. Treatment, the same.
Now, I must say at this time that all of my life, well, from age 11, I had been a competitive distance runner, taking part in 5ks on a regular basis. This began in the 7th grade, all through high school, paid for me to go to college and was a tradition I continued throughout each of my 5 pregnancies and one which I had passed down to my children. At the time all of this was going on, not only was I continuing to run and compete, I was also coaching my older daughters who were running for their local middle and high schools. Over the course of this summer, I had continued with the regular coaching schedule; by August, however, I was noticing that I was growing ill more frequently and I was often too tired to go on morning practice runs and opted instead to monitor and observe.
I say this as it brings me to the next symptom on my path to discovery. I had signed up to compete again in an annual 5k at local park. The year before I had placed 3rd overall for female runners, but this year I was not able to complete the event without walking. For anyone who exercises or does something such as this, regularly this is a sign that something is wrong. I returned to my doctor and I was told that it was most likely a combination of over training and the fact that I had been on regular antibiotics which most likely had caused fatigue and weakness. In other words, nothing to worry about. This was October 2009.
So, I rested.
Come November, I developed yet another issue, I developed some pretty severe low back pain. While this was not entirely new – having been in an auto accident 20 years before it popped up from time to time – at the time I had done nothing to trigger it so I felt it a good idea to seek treatment. I made a trip to my sports medicine doctors who told me that I was suffering with a case of leg length discrepancy and needed a shoe wedge and some physical therapy to balance out the muscles in my back. I proceeded with this plan for the next several weeks, along with continued treatment for UTIs which were still occurring.
Let us skip to February 2010 as December and January were pretty much rinse and repeat from the previous months. The back pain, by this time, was so severe that for my birthday, on the 2nd, my parents bought me one of those tilt tables. You know the ones you strap your feet into and then flip upside down to alleviate pressure on your spine? Seeing as the PT with the sports doctor was not really helping, I figured, what did I have to lose? So each day, there I was, hanging by my toes. Oh, the lengths we will go to to find some relief. Heck, a traveling salesman peddling his wares out of a paper bag would have found a customer in me, had he something to “kill back pain.”
Now, while this was going on, I was still continuing to suffer with the same pelvic pain and cramping that had started the summer prior. Seeing as I had been experiencing them for 6 months by now it was suggested that I go and see a urologist. Here I underwent an ultrasound and it was determined, for whatever reason, that my bladder was not emptying fully; the treatment for this was to undergo pelvic floor PT. I had no idea what a pelvic floor was, nor how I was going to do PT for it, but I met with the therapist and proceeded with it all the same, for the next 4-6 weeks.
Now, I am now into March 2010, I was back to coaching my track team as well as a baseball and softball team for my kids’ local association. I was also noticing new symptoms pop up. Not only did I have the pelvic and back pain, but I also began noticing that I was extremely fatigued, not waking until late in the afternoon or if I did wake in the morning, I would nap until 2, time for practice. I was also losing appetite and with that weight; when I did eat, it was minimal as I would become full very fast. In fact, I often joked with my husband that because I was not eating a lot – which I attributed to being very busy and coaching all of the time and the fact that I had never been a big eater; all my life it was said that I ate like a bird – my stomach must have shrunk. While the scale did not move much, looking at pics I can see now that I was sick the whole time.
It was also in the month of March that I made the first appointment to go see my gynecologist to get to the root of the pelvic pain that was now intensifying. A vaginal ultrasound was performed but was negative; a suspected case of endometriosis was diagnosed and I was placed on a course of birth control for the next three months to see if it would alleviate pain and to avoid surgical procedure.
In March, the back pain had worsened and I sought help from a chiropractor. I told you, at that point I would try anything… and I meant it. The doctor took an x-ray and informed me that I did have leg length discrepancy, but that I also had a rotating pelvis and unbalanced hips – most likely from having had 5 kids and the common practice of resting them on one hip over the other when carrying or at rest. (*Any moms reading this…do not do this, as it apparently is not good for spine.) He also told me that he could see that I was in early stage of arthritis in lower spine. Despite all of this, he assured me that he could greatly reduce the pain I was experiencing with several weeks of therapy. So… I let the cracking of my bones begin.
The prior treatments carried me into the month of May, all without much change, but as doctors said, it all would take time.
By May, new symptoms developed as I began experiencing gastric issues from combination of diarrhea to constipation to gas and even pencil thin stools from time to time. It was during a trip to the doctor that I heard for the first and only time the possibility of cancer. This was posed as a question asking me if I had any family history of colon cancer, of which I did – my grandfather passed from it when I was 18. As is common when a doctor makes an inclination that you may have cancer, I began to panic. My panic was short lived, as he returned quickly and said that the most likely cause of problems was the combination of medications I was on and the fact that I had another urinary tract infection. I found this odd as, by this time, I had been placed on an antibiotic to prevent the infections, but apparently, I had one nonetheless. The other option was that I had IBS so I was told to monitor my diet and to restrict certain foods, add them one at a time and document how I reacted to them.
May also saw me going in to seek treatment from an orthopedic doctor for my back pain. The chiropractic treatment was not working and pain was worsening. Second x-ray indicated the early stages of arthritis, yet he did not want to do surgery at this point and believed that I would benefit from steroid use and pain medication. Prescription #2 and #3 (#1 being the birth control).
The end of May was when I finally suffered the symptom that would set bells off. May 30th is my anniversary and my husband and I were “celebrating.” It was during this physical activity that I experienced the worst pain to date. It was so bad, in fact, that we had to cease all activity and I had to be taken to the ER. We also made notice of the presence of blood. The ER doctor listened intently to everything I had been experiencing for the previous several months and the reason for my visit at 10:30 at night. He then asked my permission to perform a pelvic exam. I had no objection, anything that would give me some answers. The look on his face as he looked up over the tops of my knees said it all. He informed me that my cervix was bleeding and that I needed to get into see my gynecologist asap. I called the next day and was in a few days later.
This brings me into June 2010. I was due for my annual exam anyway, so I guess you could say it was perfect timing. My PAP smear and pelvic exam were both done and the results were normal. During exam, I informed the doctor about the bleeding cervix the ER doctor had discovered, and she examined it and stated that she did not see any blood and that it may have been a result of bruising due to activity of the evening. She asked how the birth control was doing with controlling the pain and cramping and I explained that it had diminished and she was satisfied that her diagnosis was correct. Looking back now, I believe it was more the steroid and pain medication from the back than the birth control, but hindsight is 20/20.
July 2010 – Here comes the “Big One.” Family was visiting my in-laws for the 4th of July weekend. As is customary when I wake in the mornings, before getting out of bed I went through my usual routine of stretches. It was while doing a stretch for my back that I felt this “pop” and then this strange euphoric sensation. It was like in that instant all pain from my back vanished. I laid there and took it all in and tried to enjoy this freedom from pain. I tried to make sense of it and the only thing I could reason was that I had been suffering with a pinched nerve and the pressure on it was somehow relieved by this twisting and popping motion. (I know it does not really work that way, but I had no idea as to what had happened, until a moment later, that is). When I went to get out of bed, it hit me that something a little more serious had just happened with that simple “pop,” as I no longer had any feeling in my left leg. Not only was there no feeling, I also had no mobility in it. It basically was paralyzed. We came home straight away and I was in seeing my orthopedist at two. This x-ray showed that I had shattered vertebrae L4 & L5; surgery was no longer avoidable.
I was scheduled for surgery the following week, July 21st, to be exact. I remember the drive to the hospital like it was yesterday. It was a beautiful summer morning. I recall my husband dropping me off at the door and my mother meeting me with a wheelchair as he went to park the car. I recall sitting in the wheelchair and watching as my mother signed the sheet checking me in for the procedure. I remember the feeling that came over me, the sensation that everyone around me was drifting into the background, all noise ceasing, the feeling like I was going to pass out, you know that dizziness one feels when you stand too quickly and start to see spots and ears begin to ring, and I recall looking up to my mom and calling out to her that “something was wrong” and I recall starting to fall to my side and then nothing.
What I am now about to describe has been relayed to me from my husband over the years as he felt confident enough to divulge to me all that I went through. Basically, that funny, fainting feeling was the result of a grand mal seizure resulting from my blood pressure reaching an excessively high level. My husband walked into the waiting room to see me lying on the floor, surrounded by teams of doctors and nurses all trying to get me under control. I was immediately rushed for imaging, during which time I was delusional. I was crying out and trying to rip my clothes off. It took a team of doctors to hold me down to perform a scan of my head, which took several attempts. I also became tachycardic and doctors had to rush my husband out of room as they found it necessary to use a defibrillator on more than one occasion. It finally resulted in the doctor determining that I needed to be placed in a medically induced coma so they could run tests and not cause further elevation of blood pressure and/or heart rate. I woke up briefly while in ICU to see my mother sitting next to me in a wheel chair (a vision I thought was a dream, but I eventually found out it was the result of her having had a mild heart attack upon seeing me seize. It turned out that she was in the room down the hall from me in ICU). Then I was out again.
After 10 days, the doctor came to my room and told me that I was to be discharged. His words were that I “was too healthy to be in the hospital.” There was no direct cause of the elevated blood pressure, but he said my levels were being controlled by medication and he could not justify keeping me. I was discharged on 11 medications, anti seizure meds, blood pressure meds, beta blockers, magnesium, potassium, the steroid, birth control and pain meds and others I cannot entirely recall. I was also told to maintain regular appointments with my new neurologist because the seizure had caused an excessive amount of fluid to build up on my brain, and I needed him to follow up and make sure that I did not have permanent brain damage. Also, he would need to discharge me so I could have the back surgery. It was during this hospitalization that I was also diagnosed with MRSA for the first, of many times.
On August 24th, the day before my eldest child’s 18th birthday, I was finally able to have my back surgery. Because of the delay, the doctor discovered that the damage had become more severe and he had to go into the spinal column to clear out more fragments than had originally been present. This resulted in the need for me to remain in hospital for a few days instead of out patient. While I was in room, I noticed an issue with my urination. Basically, instead of a nice steady stream, it was coming out like niagara falls from the central vaginal area. When I was released, I called my GP and made an appointment for my mother to bring me in. I sat in the room and described my symptom and watched as he wrote the words vaginal urination and next to it a huge question mark. I know it was confusing, but I had no other words (at that time) to describe it. He wanted me to go across the street to see the urologist that afternoon. Away I went. The urologist performed another ultrasound and walked into the room with “that look.” He informed my mother and I that the ultrasound had revealed a “mass.” He said that because of the size and location he was not able to determine if it was on my cervix or ovary but that I needed to see my gynecologist asap. Here we go again.
I called my gynecologist – who, I might add, I called immediately following my seizure after doing research and finding that birth control and steroids could cause seizures and she took me off of them asap; upon hearing this latest news she had me come in asap. My mother and I sat in the examination room. I thought it was odd that the doctor did not even need me to undress, but I sat there on the exam table fully clothed when she came in and asked why I was there. I explained to her what the urologist has said and she proceeded to have me lie back on the table and press on the lower left portion of my abdomen/pelvic area. “Yep, there it is” was her remark when she hit “the spot.” She then turned to me and asked if I wanted to feel it and took my hand, placed it on my “mass” and pointed out what had been the cause of my misery for the past 14 months. She then went into look at my chart and the next words would set my mother into a frenzy as she proclaimed that I “did not have cancer.” I guess it was the mere mention of the “c” word that set my mother off. She had to leave the room and Dr “Z” followed her. So, here I sat… just me and my mass, while the doctor went to console my mother. In a short time the two returned and the doctor again, about a dozen times, repeated that I did not have cancer, but that she wanted to go in and remove this mass since it was causing me all of these problems. Now, she was careful to say that she did want an oncology surgeon present as a precaution; you know…”just in case” it was something more than a simple mass. But, when I had recovered from the recent back surgery, she wanted me to come in for this one.
This brings us to September 2010… the month of truth. Still recovering from back surgery I was laid up on my sofa bed and was talking to my 12 year old son about the evening’s football practice. There was no strange feeling this time, no dizziness, no spots, no ringing in ears, no fading into distance… nothing…. for another 10 days. Yes… I suffered another seizure and was rushed into the ER and ICU. At least this time we had a cause, or so we thought. My husband informed the doctor about the mass that had been found and the scheduled surgery to remove it. Seeing as I had done half of the work for them, being that I was in the hospital and unconscious… in another coma, he asked if they could do the procedure here and for once and for all rid me of this source of pain and complications. It was at this time that the hospital called in their gynecologist to consult on the situation.
September 9th – the day before my oldest son’s 16th birthday – while my husband went to lunch the doctor was brought in to examine me. When my husband returned, he was met by a team of doctors standing outside my room. The gynecologist met him and my husband could tell by the “look” that something was wrong. The doctor fought to find the words to tell him what he had discovered, exclaiming repeatedly that he did not know how to tell him this news. He apologized, stating that he did not know either of us, he had just met him when brought in for the consult, so how could he give him this news. The news he had was that I had cervical cancer, in his words I had the worst case of cervical cancer he had ever seen and that it was in the very final stages. He told my husband that he could not do a biopsy to confirm his suspicion as I would bleed to death on the table, but that it was not necessary as there was no doubt as to what I had as it was everywhere. He then went on to explain that based on the examinations and tests and opinions of the other doctors present I had a matter of 6 months to live, a year if I was “lucky,” and that it was his best suggestion to start me on palliative care asap to make me as comfortable as possible. But, as oncology was not his specialty, he wanted to get in contact with a specialist (my current gyno-oncologist) to consult on the case. Despite the fact that this gyno-onc did not have privileges at the hospital where I was, he made the necessary calls and late that evening he came to the hospital to see me. I vaguely recall seeing this doctor standing over me at the foot of bed, along with my entire family and someone telling me I had cancer, but it was short lived as I was out again.
A week later I was again stabilized and sitting in the office of Dr. “W.” He stated that, in spite of the recommendation of the previous doctor, he wanted to run further tests and if the results were favorable, he wanted to try to treat my cancer. I was scheduled asap for a PET scan and scheduled for a da Vinci procedure. The two revealed that my cancer was, indeed, serious and had invaded my bladder (cause of unusual urination), colon (reason for bowel issues), and had grown so large that it had blocked both of my ureters – the cause of blood pressure which had caused seizures and the repeated infections. It also revealed that it had been pressing on spine – cause of spinal fractures. The tests also revealed that, as a result of the ureter blockage, I had suffered irreparable kidney failure with my left kidney at less than 8% function and the right one in early stages. The good news was that the cancer had not spread to any distant location and I had no infection of lymph nodes, meaning I was good to go to start a treatment course.
The first thing I needed to do was to have a stent and nephrostomy tube inserted into my right kidney, so the day after my da Vinci exploratory surgery I was flipped over and had these inserted.
I began 5 weeks of chemotherapy and daily radiation in October 2010. The first two weeks were okay, but by week 3 I was in the hospital due to severe dehydration and inability to eat or drink. While in hospital I experienced an unusual vaginal discharge; it was a dark, very foul discharge which I was told was the necrotic tumor being expunged from my body. At the time I knew no better. Now I know it was actually the result of a recto/vaginal fistula and the material was actually stool leaking through. I would be hospitalized several times throughout my treatment as I went from 135 to 95 lbs – I am 5’10, you may imagine, it was not a pretty sight. In fact, I did not look in the mirror at all for the 3 months I went through this. After completing chemo and external radiation I began what was to be my 5 weeks of brachytherapy. Weeks 1 and 2 went as scheduled, then during week 3, the fistula was discovered as the rod went through. To avoid potential damage to any good tissue the treatment was cancelled and picked up the following week. This actually happened twice, so the 5 appointments turned into 7. Finally on Dec 7th, my father’s birthday, I was finally allowed to ring the bell indicating I had completed all of my therapy. Yay me!
I was given the standard three months off to allow treatment time to continue to work and kill off the cancer. I started to regain weight. I returned to “coaching” my youngest daughter’s basketball team with my dad and brother. (I was more of a figurehead and score keeper) but as many of you know…any resemblance of normalcy is a welcome change.
In March 2011, I was brought in for my first follow up examination. This PAP smear came back abnormal. Go figure… have cancer, normal PAP… treat for cancer and shrink it, abnormal… only me. The doctor called me in asap to undergo colposcopy and biopsy which revealed presence of cancer. It was at this point that I was informed that my options were pretty much down to one. Further chemo would not do me any good at this point. I could not undergo any additional radiation, so my best option was a total pelvic exenteration procedure. Dr “W” described this procedure in detail and I was asked to give him a decision at that point. It took all of 5 seconds for me to decide between months of life or a potential life saving procedure. Basically, the 5 seconds was simply for me to look up at him and give him a look to indicate, “are you really asking me this question?” In truth, I don’t think I actually “answered” him.
Before I could have surgery, though, I had to have another PET scan to ensure that my cancer was still centralized in the pelvic region and had not invaded pelvic wall nor spread elsewhere. I guess you could say I was “in luck” – while it confirmed I had cancer, it had not spread and was small enough to proceed with surgery. I met with the urologist who would remove the old and reconstruct my new bladder as well as the plastic surgeon who would remove the old and reconstruct my new vagina. Two of the key components of a TPE.
My surgery was scheduled for May 27, 2011. The surgery took 16 hours and required a few blood transfusions, but other than that was a great success. Dr “W” came into see me the next morning and informed me that, while the cancer had indeed begun to spread once again into the colon by the time surgery was performed, he was still able to get the clear margins and I was finally N.E.D.
I was in the hospital for 21 days recovering from the surgery and getting used to my new state of “normalcy.” After all, I had to learn to catheter myself through the hole created where my belly button used to be. My urologist was very proud of the neo bladder he had been able to create from my small intestine, bragging at its size and the ability it had to hold much more than most others he had done. I also had a new colostomy which I had to learn how to empty and care for and I had several drain tubes and a foley catheter to deal with. It was slow, if anything.
The only complication I had at the time was with my kidneys. This time it was necessary to insert a stent into the left kidney and place a nephrostomy tube into it. I had, just prior to surgery, been able to have the right one removed which was a relief after 8 months, but anything to get me out of the hospital. I was discharged June 17th, just in time for the completion of baseball season.
I was free for the next several months. I even made a trip in Augusto to a local amusement park and made an attempt to ride a roller coaster, which I do not recommend with a colostomy bag. The constant pulling and force one way and the next nearly pulled it from my abdomen and I have never made the attempt again.
In November I was scheduled to have my colostomy reversed. I underwent surgery and awoke to a bed full of a familiar substance. My doctor was called in and discovered right away that while he thought he had removed the fistula with the portion of colonic tissue he had removed, either a portion of it remained or I had a secondary one. Either way, I was passing fecal material again and because of it I was septic and needed to undergo immediate surgery to have the colostomy put back in place. I was given an IV medication to try to heal the fistula, along with an antibiotic to cure infection. They also discovered that I had MRSA…again. I know I have not listed it, but MRSA was a common discovery in my urine during all of my hospitalizations, which were many in between treatments and surgeries. I did not list them all, but I was constantly in and out of hospital for tube changes and complications. Too many to accurately recount and I did not want to document them all as I wanted to move on and forget. But, all in all, I have had MRSA over a dozen and a half times.
So the colostomy was reinserted and we planned to try to surgically repair the fistula, but I needed to allow the abdomen time to heal. This new surgery also brought with it a lot of other issues. The first colostomy had been “perfect” as colostomies go. This new one…not so much. It did not take long for me to experience my first – of many – “blow-outs.” In fact, they began occurring so frequently and unexpectedly that I refused to leave my house. The first occasion was while grocery shopping with my oldest girls, I had to leave the cart right there in the middle of the aisle and returned the next evening only to suffer the same fate. One happened when trying to have a date night of dinner and a movie with my husband on the way to the restaurant, which I guess was a good thing, in its way. The next and final straw was with friends, actually at dinner, before a concert which resulted in my having to return home and change before heading out to show. This was also the last time these friends and we have gone out together. It was also the last time, in nearly 2 years that I would go out of my house except to doctor appointments or when I had to go to hospital.
December 24th of 2011, Christmas Eve, the day before my family was headed out of town to see in-laws, when I was preparing to take my kids to see Santa for a traditional photo, I noticed an issue with my stoma. It was protruding from my abdominal wall.I called the doctor and he thought it was a hernia but wanted me to go to the ER to confirm. While at the ER they discovered that it was not a hernia but was instead a prolapsed intestine. Basically, imagine a pair of socks rolled in on themselves and this is what my intestine was doing. They showed me how to force my intestinal tissue back in on itself and back inside of abdominal wall ,but it would not stay there so there really was no point. I basically lived with 6 inches of my intestine hanging out of my abdominal wall for about a yr. I refused IV fluid at the ER so we could still make Santa and we went on our way.
I was in hospital a few more times following for MRSA infections. Basically, I was in every 2-3 months and had 21 surgical procedures in the 18 months post-diagnosis, one being in May of 2012. I was in the hospital for what was suspected as being another urinary tract infection. When they could not find any sign of infection in blood or urine my doctor was unsure what was happening. Finally an evening nurse came to me and asked if anyone had ever checked my gallbladder. I made inquiry the next morning during rounds and Dr. “W” scheduled me for testing that day. Sure enough, the gallbladder was in very critical condition. In fact, it was near rupturing and was removed that afternoon via emergency surgery. Have I said how much I love my nurses at the Women’s unit of Thomas John’s? Not only would they reserve my room when they saw my name come up on the floor sheet for the day (told you I was a regular), but they know their stuff and I owe them more than I could ever repay.
In November 2012 I was scheduled to undergo a revision to finally repair the prolapsed intestine. This was to have been done in the spring, but was postponed for the gallbladder surgery. This surgery resulted in a huge opening in my abdomen, in fact there was a gaping hole about 3 inches by 2 inches by 3/4 inches deep. As you can expect, because it was located inside of the colostomy area, I suffered repeated infections as the opening was constantly exposed to fecal material even when packed with sterile gauze. But the only way for it to heal was from the inside out, so I had to wait out the 4 months it took to heal. Because of the difficulty in wafers adhering over the hole, it was yet another cause for “blow outs” and another reason for the refusal to leave home.
In February 2013, after suffering with issues such as dizzy spells, constant watery stool, dehydration, rapid heart rate, etc, I went to the doctor and it was discovered that I had thyroid issues. I was sent to an endocrinologist and placed on thyroid medication. This seemed to work for the first few months but then symptoms changed and I was sent back. Basically, my thyroid went from hyper to hypo or vice versa, I can never recall which came first.
In August of that year I went into the ER after spending several days unable to keep any food or water down and suffering severe stomach pains. The initial testing revealed that my levels were way off, potassium, magnesium especially. I was placed on potassium one day and would be fine and then the next it would be low again. I spent a week receiving the IV fluids but the stomach issues continued to worsen. It was then discovered that my intestinal tract was shutting down. Unsure what was causing this problem, I was placed on TPN feeding machine for then next 2 weeks. It was finally discovered that my thyroid levels were to blame. My TSH, which was supposed to be at around a 4 was at a 47 and this elevated level can cause issues with gastric system, which is one of the reasons I had always been suffering with watery stool and why I had frequently suffered with symptoms of dehydration including fatigue and severe muscular cramping and distortion. I was introduced to a gastroenterologist who informed me that apart from the thyroid issues, he also believed that during my surgery in 2011 too much of my small intestine was taken to make my false bladder and that the amount taken was to blame for the inability of my system to remove water from stool and why I suffered from watery stool. I was placed on a strict diet, consisting of the removal of basically everything you can think of which most people would eat to help them “go”: fresh fruits, veggies, high fiber, whole grains, sugary drinks, candies, gum etc. Couple this with the regulatory regimen I must follow for beverages due to the renal failure and fake bladder conduit system and I can basically name on two hands the items I can eat or drink on a regular basis.
Basically the bladder/kidney issue is one where I not only must consume over 64 ounces a day to keep it flushed to reduce infections, as my “bladder” does not trap urine and allows it to flow freely back and forth in and out of kidneys, permitting development of bacteria, I must keep it flushed and emptied every 2-3 hours via catheterization. I also must avoid caffeinated beverages – for kidney and colostomy, beverages high in sugar and/or potassium are a no-no, foods and drinks high in sodium are a no-no, as are food and drinks high in sugar. What does that leave? Bread and water…as long as bread is not made with whole grain or high in fiber. Lol. In short, it is a full time job monitoring my daily diet. Which is probably why I cannot work. Hahaha. Yeah, that is why I cannot work. 🙂
The evening before I was to be discharged from hospital, after regulating thyroid and getting bowels “in order,” I was given and injection of Reglan into my port. I was on phone with my in-laws telling them about plans to go home and waiting on my husband to return when I began to feel this strange sensation across my face. I began to slur my words as the right side of my face became numb and paralyzed then it began to twitch. I immediately pushed the call button for my nurse who rushed in and noticed the slurring of words and the twitching of facial muscles. Then this involuntary muscle spasm made its way to my arms, hands and legs. At first everyone thought I was having a stroke and they immediately coded me and called for the ER staff stat to rush to my room. When my husband arrived, there was a room of nurses and doctors and the infamous defibrillator as I was once again tachycardic. I can only imagine what he was thinking. I ordered him to leave the room because I did not want him to witness this again as thoughts turned from stroke to seizures once again. Of the two of us, my husband had been the one to take antidepressants. I have never taken a single one. I NEVER, through any of this adventure, thought cancer was going to get the best of me. I have come to the realization that at some point my kidneys may play a hand in it, but I will deal with that when the time arises. But… I was going to beat cancer, I am too stubborn not to. He had just come off of them and I did not want him to be drawn back down that path. Of course, he refused. They rushed me down for a head CT and performed every neurological test known to man. My best picture through all of this is the one from this evening with me looking like medusa for the EEG (see photo).
Well, it turned out that after everything I had been through beginning in June 2009, they had finally uncovered the one medication on the planet that I am allergic to… Reglan. There was no stroke, no seizure, simply an allergic reaction, with seizure-like symptoms. I guess if I was going to go out, I was going to go out with a bang. I say this as this was the last hospitalization I would have for over a year and four months.
I had finally thought I was in the next leg of my journey with cancer. The part where I could finally start to define and adapt to my new “normalcy,” a term that, as you can imagine, has been defined and redefined time and time again through my adventure. This was not to be, as a few weeks ago, while attempting to return to some of my old normal, I went to the skating rink with my 5 kids. Despite being very careful and staying at the edge, near the railing and trying to avoid all others, while trying to avoid one small child I took a spill. I knew as soon as I did it, yet I tried my best to deny it and will it not so, but there was no denying it… when I made an attempt to stand and collapsed under my own weight, there was not denying it and later testing confirmed it, I had dislocated my hip and fractured my femur.
So, here I lie on 4 additional weeks of bed rest awaiting PT and the final decision as to whether I will ever be able to walk again without the use of a cane or walker.
I told you mine was a long one. But, if you think reading it was long, try living it. Lol. Even typing it, it seems like a whole other lifetime ago. That person I started off telling you about, the runner, the coach, the athlete, I wonder… does she still exist? Sometimes I question if she ever did, as I am so far removed from her now. In her place now is a woman that I never would have thought existed, but I am glad does.
I may not be the woman I was, but it was because of that woman that I can be here today to share this story, and this woman who now exists is the one who will see me through the continuation of the story that I know has not ended, and quite frankly I am not certain ever will, and perhaps one day there will emerge yet another woman who will then take her place and carry on the next leg of the journey. Basically, my story is one with sequels yet to be written, but that is okay because what has yet to be written remains a blank slate, and I hold the pen.
To most, I imagine this tale of woe must seem most horrific, and to an extent they would be correct. However, I have always been a most optimistic person and have subscribed to the notion that in every negative there is a positive to be found, even if we cannot always see it at first glance. Through my journey I have asked myself “why me?” – and not in the way you may think. It was never “why did I get cancer?” or “why did this happen to me?” but I wanted to know “why did I survive?” “why was I spared?” Shortly after my “big one” (the TPE) I began joining support groups to find others who had shared a similar experience. Fortunately, there were none to be found. Instead what I found was that I could serve as a source of inspiration and encouragement to others. Where they had thought that their diagnosis of cancer was a death sentence, when they read or heard what I had been through they began to believe, some for the first time, that they could beat this disease too. Sadly, this was not the case for all and I have had a very difficult time dealing with this, as some of these sisters were diagnosed at a stage far less advanced than my own yet for some unknown reason theirs advanced in such a way that mine did not. I know that there will never be an acceptable explanation for this and I struggle to deal with that. In the meantime, I have chosen a path which allows me to help others. I volunteer with mentor groups to offer online or phone support to women in various stages, I am a local chapter leader for a national cervical cancer group so I can educate women about steps they can take to prevent the development of this disease, and I am an administrator to online support groups where women from around the world can come together to share stories, advice, ask questions and simply be there for one another. These women would never have entered my life without cancer and they have brought more joy and love that I never knew was missing. This support system is why I believe I have been spared. I have always known that it was not done solely for the benefit of my family or myself; what purpose could that possibly serve? But, if I can share my story and in doing so educate even one woman about the dangers, symptoms or the need to vaccinate their son or daughter to prevent a future case of cervical cancer, then every moment of hell I have been through, every moment of pain, each surgical procedure, each infection, all the broken bones…everything was worth it.
That is the part of my story I am living now and the chapter that I hope is never ending.