Life With Cancer - Chapters 10-11

Chapter Ten - Pain - My Worst Enemy

         In 2002, around March I found that my ankles started to hurt a lot. I was sent to a neurologist about it, I can’t remember what exactly the conclusion came of that visit but he did said the way I walked I rolled my ankles, and that was the reason for the pain. I was limping by that time, but hadn’t really noticed.

         As time went on, I was starting to get a little pain in my hips but not enough to make a big deal of, when I walked my left knee turned in. A year since my stroke my dad pointed out to me that I “walked funny”. What he meant? I walked on my tip toes. I never noticed because I had been walking like this for so long, it was normal to me.

         2003 came along, and my limp is getting worse. There is still the not really noticable pain in my hips. I kept complaining about my ankles and limp, and I was sent to a lot of specialists but the only conclusion was shortened achillies tendons and that I had to go to physio to try and stretch them on my own so that I wouldn’t have to go through the surgery to stretch them.

         September 26th, 2003 was my last day of chemo. Three days after chemo was over I had my ears repierced against doctor’s wishes because I wanted to prove that I had control over my body again. I was in a great relationship, my boyfriend had moved to Edmonton to be with me.

         At one point I went to the chiropractor and when he went to realign my spine he put pressure on my right hip. I screamed in pain, my chiropractor sent me for xrays, the xrays showed my right hip was slightly dislocated and there were tiny heirline fractures along the cup of the joint.

         2004 came along and it had a nasty surprise with it. Extreme, excrutiating pain, and that doesn’t even touch how bad it was. I woke up one morning, started walking down the hallway and I come to a stop because this pain spikes through my left hip and leg, it travels down to my foot, I thought I had broken my leg by just walking, or from sleeping wrong. Art tried to help me to the couch but I couldn’t put any weight on my leg, Mom also tried to help but it was no use. So using crutches I hobbled my way to the living room.

         I went to my doctor about the new pain, and it was all tied to my feet. I heard many reasons for my new pain. They were:

1. I wasn’t exercising enough, my joints were stiffening up and so I had pain.

2. I was gaining weight, so my hips and muscles were having trouble holding my weight (I am and was never overweight, at that time I was around 150lbs, which was close to the weight I was at before cancer and chemo).

3. The scar tissue on my brain left from my stroke. I have three spots on my brain of scar tissue. One of those spots supposedly was effecting my nervous system, and therefore my brain was telling my legs that it hurt to walk, so my head was basically telling me it hurt.

4. I was told it was because of my walking, my knees turned in now when I walked,  I was then pigeon toed, everything was turned inward. The pain would go away once I got my achillie’s tendons stretched out and I started walking flat footed again.

5. I was told it was my back, because I twisted everytime I took a step to compensate for the lack of movement in my hips.

         Near the end of 2004, I was using a walker to help get around. I had gone to get a perscription refilled and mom saw that there was a walker for sale so she bought it. I was 21 at that time, and I was against the whole thing, in my mind I was thinking “What 21 year old uses a walker to get around?” I felt that using that walker only clinched what was happening to me, and made the pain more permanent and I wasn’t ready to accept that the rest of my life was going to be full of pain.

         Besides dealing with the pain I dealt with a lot of limitations, and I went through a lot of emotions. It played a little on my emotional and mental state.

         As the pain set in, I went into depression because I was afraid that this would be for the rest of my life, and it got worse as doctor’s kept giving me “reasons” for it but never came up with ways to get rid of it. I was sent to a psychologist after a neurological assessment for my memory and diagnosed with moderate-severe depression. I was also put on anti-depressants to help with the depression. The psychologist who did the assessment told me that I was depressed because of my having cancer, and honstely that could have been one of the reasons why I was surprised, but I told the psychologist that 1.) I didn’t feel depressed, and 2.) If I was depressed it was because of the pain I was in and not the fact I had cancer, considering by that time I was in remission.

         I remember after the neurological assessment I was sent to a phsycologist to help with the depression. Her theory at that time for my pain was that I was in remission and in her words – “missed the attention, so I was saying I was in pain because I missed being sick.” Really? I remember she said that to me and I just stared at her like she was from outer space. I couldn’t believe she would say something like that. I didn’t miss being sick, I didn’t miss the attention, I hated being in the spot light. It hurt even more that she agreed with the doctors that the pain was all in my head. I only went to her for a year, because I didn’t agree with some of her theories and I was obliged to continue seeing her. It was doing anything for me and she just made me feel more screwed up every time I left her office.

         One of the other things that depressed me was my love for biking and not being able to do it. I saw a cyclist on the highway or a friend of mine on his bike and I would instantly get jealous and envious. I believe I even told my friend to his face that I was jealous of him because he got to ride his bike. It meant there were a lot of things I couldn’t do anymore. I couldn’t go for walks out in the fields anymore, cause I couldn’t lift my feet high enough to get over plants and ruts. I couldn’t go for the walks Raven and I used to go all the time because I would tire out and the pain would just get worse and worse. No more sitting on the ground, no dancing, jumping, skipping. Sitting on a playground swing hurt cause the swing would squeeze my hips.

         With the pain came weakness and fatigue, I was “sentenced” (as I like to call it) to a wheelchair for days that meant a lot of walking. I remember in the beginning I refused to submit, so I gritted my teeth and just walked, screw the wheelchair was my attitude. I learned really fast that if I walked and forced myself to walk things just got worse. This was something the doctors never understood.

The levels of pain I went through are as follows:

         I always had pain in my thighs, hips and lower back, this pain was always with me – sitting, standing, laying down, always there. It would spike slightly when I took a step.

         If I walked I would be fine for about a half hour to an hour, depending on the day and if my pain meds were working. If I pushed myself past the hour mark, whether I’ve stopped and rested or not the pain would travel down my thigh to my knees. By now my thighs would have gone numb, and my muscles would be spasming.

         By a couple of hours, (and this is with breaks) and I still haven’t given in my calves would feel like something is slicing them up with a knife, it’s a very acute pain and I would go to rub but my skin would be so sensitive that you would almost expect bruises to pop up where I rubbed. I learned to never rub, that just made things worse. At this time my knees would start to give out, and I would start triping or stumbling.

         Three to four hours of walking the pain will have traveled down to my ankles and feet. My toes would even hurt. By this time I will have given up or we would be heading home, and sitting to try and relieve the pain wouldn’t even work. My pain meds wouldn’t even touch the pain by this time. I would basically go lay down and just suffer through it. I have only allowed myself to get to this point a few times, either because I was stubborn, had no available wheelchair, or was having a good day and pushed myself way too hard.

         2005 was just a year of coping, but as time went on I got more miserable, I went into severe depression. My relationship was failing, I was extremely limited in my mobility, I hated movement more and more.

         2006, Art and I broke up, there were a lot of issues between us but to me my pain was the breaking point. I had become unbearable to live with by this point. Not many people wanted to be around me, because I became somebody that I didn’t even want to be around. I moved into my grandparents place for a couple of months because there was no room for me at my parents house, and then into my own apartment, which got me motivated to get away from the walker, as I had to deal with a flight of stairs to get down to my apartment. I lived there for 3 months and loved it until my landlord gave up management and my apartment was almost broken into 3 times with in a matter of weeks. I started using a cane to walk around. I used that cane for the next year or so.

         This pain has only driven me to tears once, and that was when I was living by myself in 2006. Maybe because I was actually alone and I didn’t have to hide how much it hurt, so I let myself break down. This was a little over a year before surgery. The pain by that time had escalated to the point where I was literally confined to wheelchair everywhere I went, I had upgraded myself to a cane because I lived on the first floor and there was a flight of stairs to get down, and I couldn’t carry the walker up and down stairs by myself. I also remember that day I was in so much pain I wanted to scream but couldn’t because the pain left me breathless.

         Pain changed my emotional state, I also blame it for one of the reasons Art and I had broken up at the time. I had become a very miserable person to be around. I didn’t even want to live with me, it was so bad. I drove a lot of people nuts with my mood swings. I took everything personally, there was no joking with me, everything was an insult. I became very easily frustrated, I was forever tearing myself down. I was an angry person.

         I remember for my grandparents 50th anniversary, my aunt and cousins were visiting from Ontario, and my cousins went to go walk out in the fields at my grandparents farm. I was left inside, I was still going through treatments and the pain was just starting to take effect. I had felt so left out that I had been left behind. As it was they had gone out to work on a poem for my grandparents anniversary but I didn’t know this. I remember getting really upset because I wouldn’t have been able to keep up, and my immune system was really low at that time so I wasn’t really allowed to go and walk around outside. I remember crying and just ranting that I couldn’t go and walk  the fields anymore, that I couldn’t have fun anymore. Enjoy my cousins company, or any of that. Afterwards I felt really embarrassed and bad because I done this in front of my aunt. She reassured me it was alright, because my uncle had passed from lung cancer years before and she had gone through some of the same things with him when he was fighting his fight.

         It’s weird how pain can change a person, and not for the best either. I became a person I didn’t know and didn’t want to know. I didn’t realize it back then, but looking back and hearing people talk about it made me realize just how much it had changed me. I also realized that I really needed to start looking after myself and finding a solution to get rid or at the very least ease the pain before I couldn't walk at all.

Chapter Eleven - A Solution?

         2007 was a huge emotional rollercoaster for me. I had made a doctors appointment with Dr. Larrat and I had put myself in a frame of mind that I was going to make her listen to me. No more going along with what she thought best, she was going to listen to me, she was going to understand that I wasn’t feeling what she said I was supposed to be feeling. My mom enforced the thought in my head and I wish I had realized this years before that I am the one that lives in my body, what I was going through nobody knows what it feels like unless they were in my shoes. So I went to every doctor’s appointment ready for a fight. Dr. Larratt after I saw her suggested three different specialists for me. A rheumatologist, neurologist and somebody else that was along the same lines as a rheumatologist.

         The rheumatologist wanted to inject cortisone into my joints for a condition called Bursitis where the bubble called the Bursa becomes inflammed. The only problem with that whole treatment, they weren’t 100% if that was the problem, and cortisone is a very painful injection. She wanted to do the treatment that day, and with my fear of needles I freaked at the whole idea. I told her that I needed to think about it, and if I wanted it done I would call in and make an appointment for it.

         I then went to see the neurologist who turned out to be the same neurologist I had seen back in 2002, which made me happy, because he did listen to me back in 2002 so I relaxed a bit, but not much. I remember sitting on his exam table, and after he went through the reason why the appointment was made because my doctor’s loved writing letters to each other to keep everyone in the loop, he asked me what was going on. I remember telling him flat out, “I really need you to listen to me carefully, I am in a lot of pain, I can’t even describe how extreme my pain is, and my pain is in my hips. Not my back, not my feet, not my neck, my hips.” I then remember bracing myself for the whole “it can’t be your hips” like I had been hearing for five years straight already. Instead I heard, “tell me exactly where your pain is, show me if you can.” So I pointed directly to my hip joints, “walk me through the progress of your pain. Where it starts and where it ends.” So I described it exactly, how it would progress through the day. He paid very close attention, and I couldn’t help but feel hope. The results?

         “I don’t think it’s nerve death like I thought.” And he went into an explanation about nerve death and how it was caused, nerve death can be very painful as well. He said that the pain was to closely linked to my joints and there’s no nerves in the joints. Then he  asked me a question that I never thought of until that day. “Has anybody taken xrays?”

         I told him no, only a few years before when I went to a chiropractor but the xrays only showed a dislocated hip. He was puzzled as to why nobody thought to take xrays since then, so he wrote me out a requisition form and sent me for xrays. I felt like we were finally getting somewhere.

         I went for the xrays, had them done, though it was quite painful as to how a lot of the positions you need to be in so the technicians can get the pictures they need were really hard for me to do. When it was done, the girl doing the xrays asked me to sit and wait so she could make sure that the xrays were what the doctor had asked for and that they were good. Next thing I know she comes in asks me: “Were you in an accident?” Completely baffled as to why she would ask such a question I told her no and asked why. “I think I got your xrays mixed up with somebody else’s, because these are hips of an 80 year old woman, or somebody who was in an accident.” Really baffled and curious despite the feeling of my stomach dropping to my feet I asked to see the xrays, and she showed them to me. When I saw the xrays, I knew there was no mistake considering my name was on them, she had the right patient, and I knew what the result was going to be. Hip Replacements. What I saw scared me and answered a lot of questions.

         See what I saw was not your normal ball and socket hip joint, Where a normal ball and socket would be was total destruction. My right side the ball was a jagged triangle, the socket was (for lack of a better word) mashed on top of it. The bone completely jagged and fractured. My left side was worse, the ball was completely gone, the socket was again mashed on top, and the bone was also jagged and fractured. Which explained why with large steps or stairs my hips would lock on me and I couldn't really raise my legs up.

         When I told her that she had the right person, and I explained to her that I was actually a cancer survivor, and I had been dealing with what was on those xrays for the past 5 years, and I thanked her because now I had the answers I had been looking for all that time, before I gave up. So she left me to get dressed and she went to go and put the xrays in an envelope because the neurologist wanted to see them and me at the same time. So I was to take them back with me.

         I remember when I saw mom, and waited for the xrays, I told her what had happened with the technician, I told her that I was bound for Hip Replacements, she looked a surprised until I explained to her what I saw. You know, when I told her the conclusion that I had come up with I wasn’t happy. I should have been, but I wasn’t. I was terrified. I know I had told Dr. Larratt I was at the point that I would do absolutely anything to get rid of the pain, but I was scared.

         I remember waiting for the neurologist, cause he was viewing the xrays without me. He came into the room, sat in his chair, and looked at me not very happy. “Well, your hip joints have crumbled, they are almost non-existant. I will send the results of the xrays to Dr. Larratt and it’s out of my hands, but it looks like hip replacements to me. I don’t usually deal with kind of thing, I deal with the brain, but if there is anything I can do let me know and I’ll try my best.” I was so relieved and I was – despite my terror at the prospect of what was ahead of me very grateful for everything he had done. I thanked him for having the xrays taken and told him that he had done enough already, he had gotten the answers I was looking for, and I also requested to have the results faxed to my family doctor as well. I left that doctor’s office with mixed emotions, extreme  joy to extreme terror.

         Now why was I scared? See my Oma had a hip replaced 15 or so years before, and it caused her a lot of problems, at that time her mobility had gone downhill so bad she was confined to a walker around the house, and wheelchair when she wasn’t in the house. They said her replacement had triggered her MS, and others said they really messed up on the replacement when they put it in. I think the truth went to the grave with her.  All I saw was the pain she was in and the problems she was having and I saw myself in her shoes, only double because I needed two replacements not one. I didn’t know if I could handle that. So I was actually against the replacements in the beginning. Then dad told me “talk to Oma, get her opinion.” So before I went and saw any of my doctor’s, dad and I went to go visit Oma and we sat down while dad went outside and we talked about it. I asked her questions. I had asked her if it had been worth it for her, despite the troubles she was having at that time. She had told me “It was the best descision of my life, Rose get the surgery done, you won’t regret it. They have better technology now then they did back then, it is very unlikely you will go through what I am dealing with.” That had made my mind up for me. With her reassurances, and her resolve that I should have the surgery done, I decided to fight to have the replacements. I had also asked her how long she had gone before the replacement failed and she told me “A glorious 9 months and I will never forget them. And I would do it all over again.”

         I saw Dr. Larratt not long after that, expecting her to tell me that I was going to see a surgeon. No I got, “I got the xrays, and it looks like you need hip replacements but…” Yeps, there was a but. “You are too young for hip replacements, and we would like to wait another 10-15 years before you get them done.” I’m pretty sure my jaw hit the floor. I was at that point with my pain, that I was barely moving, and I was very close to a permanent wheelchair. I had been considering getting a wheelchair for a couple months already, because walking was just to the point that it was too damned painful. Walking through my parents house was exhausting and excrutiating pain, and it’s not a big house. Ten steps made me want to take a chain saw to my legs and cut them off, convinced it was the only way to make the pain go away. In fact, everybody knew I was having a bad day when I would start things like “Somebody have an axe, I’m going to chop my legs off.” or “Whoever invented legs should be shot, they're nothing but pain in the butt, and good for nothing.”

         I remember mom and dad going into a fury. “But she’s barely moving now, her knees are giving out, if you wait that long there will be nothing left to save.” I also told Dr. Larratt, “if you wait that long you will not only be replacing my hips but you’ll also be replacing my knees.” Because my knees were giving in as well, or I was convinced that the way they kept giving out on me which was causing me to fall down a lot besides the tripping. But she held fast, I was to wait 10-15 years. I remember going home broken hearted and really depressed. I felt like a baby with candy being waved in front of it’s face and then having it snatched away. Only here was a solution, here was a way to be painfree and it was snatched away when it was just out of reach. I was on the verge of giving up.

         I got a phone call from my family doctor’s secretary with an appointment, now my doctor never did that. I went into that doctor’s office not knowing what to expect. I sat down and she told me. “I got the results from the xrays, and I have sent a referral for you to a orthopedic surgeon for a consultation, you will be getting a phone call once the appointment is set up and that should be in the next few weeks.” I was stunned.

         “So I’m getting hip replacements?” I couldn’t help but ask.

         “We’ll see what the surgeon has to say first but yes.”

         “But Dr. Larratt said I had to wait 10-15 years, I’m too young.” I told her still stunned.

         “You don’t have 10-15 years, you need them now. Despite your age once the surgeon sees those xrays he will see this an emergency and you need them as soon as possible. ” This gave me hope like you wouldn’t believe, suddenly that candy was just at my fingertips. I left there excited and anxious. I believe it was the next day, and I had my first consultation with the surgeon in April of 2007. I had seen the neurologist in early March 2007.

         Now when I had walked into that surgeon’s office I was anxious and excited. This was the first doctor's appointment that I was actually looking forward to. The wait in the waiting room seemed to take forever - two hours and half hours actually, and then I went in there with my dad who was the one who requested to go with me. I didn’t want to go alone and I was glad for the extra set of ears. Sitting in that office, when it was finally my turn, I remember the surgeon coming in with two other people on his team, one was a physiotherapist and the other a nurse, and his first words to me were, after introductions: “Well, we have two options here, we can do surgery or we can let you suffer and put you in a wheelchair here and now. In my eyes though, we only have one option and that’s surgery.” I was baffled, I didn’t know if he was serious or not. I quickly learned that he had a dry sense of humor and when he was making a joke he always did it with a straight face, and always had you wondering if you were supposed to laugh or if he was actually being serious. He was a great surgeon, very thorough, and he always made sure I understood what was happening no matter how many times he had to explain things. He told me flat out I had no other choice but hip replacements.

         The surgeon told me that if we didn’t do surgery soon I was 3 weeks at most from being confined to a permanent wheelchair, and he was surprised that I wasn’t in one already.

         I asked him if I was too young for the surgery and told him the whole conversation with Dr. Larratt and her opinions of my being too young for the surgery. He looked at me in shock. “I do hip replacement surgery on more young people than I do on seniors, though I don’t usually have patients in their early 20s, but I do have a number of patients in their early 30s and 40s.” I was surprised by this little tidbit of information. He had me walk up and down the hallway so he could see my walking without an aide, and he told me that if all went well, my knees and my limp should for the most part disappear, though he couldn’t guarentee it. I asked him if the surgery would get rid of the pain, he told me it usually did, though some usually still had a little pain still even after surgery. It all depended on if the person followed instructions, went to physio like recommended and followed the exercises they were told to do. I asked if the surgery would be painful, he told me with the pain that I had described I should have no problem with pain after surgery, and that they would be giving me an epidoral for during surgery. I balked at that because I wasn’t allowed any needles in my back because of my stroke, so it was put in my file that I had to be put under for the surgery.

         I was enrolled in pre-surgery physio to strengthen my legs up as much as possible, and I had a few more visits with the surgeon and sent to a class to prepare me for surgery. August 10th, 2007 was the date set for surgery. I was so excited! That light at the end of the tunnel was in reach, I had the candy firmly in my hands. I cheered up a lot with just the prospect of a cure in my very near future.