Life With Cancer - Chapter 12-13

Chapter Twelve - Surgery and Recovery

         August 10th came along and I went in for surgery. I was to get intervenus antibiotics before surgery to help prevent infection because of my compromised immune system, but because the student nurses couldn’t get an iv in me (they really didn’t try all that hard), I ended up getting the antibiotics during surgery instead. The anesthesiologist came to my bedside when I was down in prep, and told me he was to give me an epidoral, and I told him I couldn’t have that because of my stroke history, so he changed the orders and got the anestetic he needed to put me out. He also had a hard time getting an iv in on me, but he got a temporary one so he could apply the anestetic and the antibiotics. He told me he would give me a better one once I was under so that I didn’t have to suffer through his poking and proding until he got a good iv in.

         I remember being wheeled into the OR, and seeing all the tools laid out for my surgeon’s use, along with nurses and the anesthesiologist sitting in a chair placed next to where my head would be. I was lifted and transferred from the gurney to the operating table, and my surgeon was standing over me. I felt like I was in the movies where the patient is laying on the table and all these faces are looming over them just before their eyes close and the screen goes black. I remember seeing my surgeon leaning over me, and saying “Good night Rose, see you on the otherside.” The anesthesiologist saying “You will feel yourself starting to drift off, don’t fight it just let it do it’s thing.” A cold sensation going through the iv and up my arm, I remember commenting on the coldness and he said "I just got it out of the fridge, so it will be cold, don't worry you're fine, have a good sleep" and I was out.

         Now let me say this, seeing the saws and all these other strange looking tools laying out was pretty damned fightening and intimidating. I won’t go into details as to how the surgery is performed, I will save you that. I was told what he would do, and how he would put the replacements in, and then I was shown in detail after surgery what they did with pictures in physio, and it was enough to make me nauseous and shocked that I had allowed them to do that to me.

         In the very beginning after surgery, I actually regretted the surgery. When the surgeon had come in to visit me in Recovery I had asked him if he could give me my old hips back. He smirked and said “there’s nothing left of them.” He had asked my permission and I had even signed a form giving him permission to perserve my original hip joints for study, because he had never seen hips in such bad shape, and damaged so bad from chemotherapy. Well, apparently, while he was taking out my joints, they had crumbled as he took them out. There was literally nothing left to study. They were in worst shape than the xrays had shown.

         Waking up was a whole new adventure washed with pain. See they didn’t take into account all the pain medications I had been on over the past 5 years, my body had grown immune to pain killers, so the morphine they put me on didn’t work, at all! In fact, the pain from the surgery was worse than before surgery, it was sharper and more pinpointed to my hips. I remember later that day a physio came in, and he wanted me up and sitting on the edge of the bed, and possibly even standing and possibly even taking a step with help. I thought he was crazy, I think I may of even told him he was crazy. He slipped a garbage bag under me to make it easier for me to move, and the moment I moved the pain hit. He kept pushing me, encouraging me to at least sit on the bed. But the pain meds weren’t working and it was so painful I couldn't help but cry, scream and fight with the physio to leave me alone. He was surprisingly very patient with me, and took everything I threw at him with grace. With his pushing me and encouraging me, I eventually got myself on the edge of the bed and sitting up, then when I thought he would leave me alone, he said "why don't we try to stand up now?" I shook my head and protested saying it hurt so much that I just couldn't. "Come on, you've already come this far, just sit, catch your breath, and then lets just try. Take you're time we are in no rush." I did stand for all of maybe 30 seconds, when he tried to get me to take a step, but I wasn't budging on that one, and considering the amount of screaming, crying and begging to be left alone, he let it go.

         They kept on trying different mixtures of pain meds but nothing touched the pain, so I went through it. I remember my roommate who had just had her knee replaced, couldn’t stand hearing me crying and screaming everytime the physio came in to have me sit up or stand she would leave the room. She said it broke her heart to hear me in so much pain. I’m sure she was happy when she was sent home the next day.

         I was in the hospital for 4 days because I needed blood transfusions due to the fact that I had lost a lot of blood during my 5-6 hour surgery. My surgeon had decided that having both hips done at the same time was best, to give me better chances at a good recovery. See, normally if two hips needed to be replaced, one was done and then after 3 – 6 months of recovery than the other one was done. But I didn’t have a good leg to begin with so that wasn’t an option for me.

         Once my blood count was back to normal, I was then transferred to the Glenrose Rehabillitation Hospital for the rest of August and most of September where I got physio everyday. Now the transfer to the Glenrose was extremely stressful for me, I was alone when they came in and said “your being transferred today”, when I was to transfer I needed to have everything with me that would be used in physio – walker, canes, crutches, clothes, personal toiletries, etc. I freaked and the closest one that was able to be there to help, because I only had a couple hours to prepare was my brother. He came in and he looked the way I felt. Shocked. They had the canes in bed with me along with my file. The porter pushed me obviously, with my iv pole. Willy trailed behind us with his arms full of my bag of clothes, crutches and walker. Now, because the Royal Alexandra Hospital and the Glenrose are right across the street from each other, there is a long tunnel connecting the two hospitals. We got to go through that tunnel, and it seemed to take forever to make the trip. The porter was out of breath by the time we reached the Glenrose and Willy was trying hard to keep up. I remember we got to registration, and the porter crammed my gurney into this tiny office, with Will half in, half out of the room. Between the two of us we told the lady my information, and then I was pushed up to my room. Then I was transfered to a bed, and my brother deposited my stuff, and I think he left shortly after that, after making sure I was okay. Then the head nurse, I can’t remember his name, came in and got more information out of me.

         Once I was in the Glenrose, recovery and physio started off right away. Unfortunately, it didn't start off as well as everybody said it would. As for being on my back for four days except for when physio came in, I had a bad case of vertigo. Every time I got out of bed, I was vomiting. Food never stayed down. So the lady I had for physiotherapy first came to my room so that I was at least doing something, and it usually didn't go for the full hour.

         Physio in the beginning was really hard and painful once she had me up and actually walking. Though the doctor’s had finally found a pain med concoction that took the edge off at least, it was called one Tylenol 3 with codeine, they stuck with it because it had helped before surgery. I was given the medication right before physio so after physio it would kick in, go fig. I had a great physio therapist, who was really understanding, and always ready with a challenge.

         I had a goal though, and it really helped me along. I had a wedding to go to two weeks after surgery, in that span I had to be out of a wheelchair because the church wasn’t wheelchair friendly, I had to master stairs on crutches as well. I had to be on crutches and steady. My physio was thrilled when I told her this, because she told me that with this goal and these challenges it gave me the motivation to work hard, and it gave me something to look forward to at the end of the day. She also enrolled me in a class to help strengthen my upper body so that I could stand being on my crutches longer and so I could wheel myself around without tiring out too soon. I got to know some of the people on my ward which consisted of middle aged people and seniors. The ward I was on dealt with broken bones that weren’t healing properly, amputees that lost one or both legs, broken hips, knee and hip replacements. I was one of two young people on the ward, the other young person was a young boy of 18 who had lost a leg to bone cancer. He was being fitted for a prostetic leg and was going through physio to learn how to use the leg and to strengthen what was left of his leg to support the prostetic.

         I went to that wedding, and surprised everybody with how well I was progressing in my recovery.

         In my recovery, I had run into a few complications, and it was rough in the beginning because I had to depend on nurses to help me with my basic needs.

         In the hospital and in Glenrose I dealt with Vertigo for two weeks. I was flat on my back, physio was tough because everytime I sat up I vomited, I couldn’t keep food down for the life of me, especially Glenrose food. My physio came to me because I couldn’t keep my stomach being wheeled down the hallway, the motion threw me off every time. I was glad when I was over that.

         A bladder infection because they had inserted a cathedar, I had it in a week more than I was supposed to because in the beginning my recovery was going very slow due to the staples holding my incisions together were a hinderance. They tugged and pulled with the movement and so it held me back. I was on a cathedar because transfering from wheelchair to toilet was really hard and took two people to help me because for the first two or so weeks I wasn’t allowed to put full weight on my legs yet, so I didn’t damage anything.

         I also contracted Jaundice from the loss of so much blood, and though the blood tranfusions were supposed to help and prevent jaundice, I still contracted a mild case of it. My eyes and hands turned yellow, and it got me strange looks from my physio. She was the one that noticed and told the nurses on my ward to get me tested for it so they could treat it. As it was they gave me anitibiotics, and I was told to drink lots of fluid, because it had thickened my urine which I had totally noticed, and my physio started taking me outside for my physio appointments with the excuse to start showing me how to walk on uneven ground like sidewalks and grassy areas. Which I totally enjoyed.

         Another problem was nurses, I don’t know what it was about the Glenrose but I didn’t like a lot of the nurses. There was one head nurse that I did get along with, he was very compassionate, he was the one that had checked me in, and he had a lot of patience with me. Sometimes he was very firm with me, but only when I deserved it.

         I remember not long after I was admitted, I had a nurse who was helping me into bed. Now, these nurses are trained to deal with hip replacements and broken bones and everything else that steps onto that ward. One of the rules after hip surgery is absolutely no crossing of the legs, no spreading of the legs because it is very easy to pop out a hip replacement because there is nothing holding the joint together. These nurses know this, as they drill it into patients heads every day. This nurse was helping me put pj bottoms on, I had told her that I could either sit up on the edge of the bed and put them on that way with help, or she could put my feet into the pant legs and I could lift my butt up and she could pull them the rest of the way up, seeing that was a physio exercise I was doing and I had to do it every night anyway, it was my homework. This nurse, (I really don’t know what she was thinking, she didn’t speak very good english as it was), said no she had a better way, I remember she was very rough going about it, and I was arguing with her as it was, and she grabbed my left leg and pulled it to the side, spreading my legs. My replacement on my left side made a clinking sound, we both heard it. She dropped my leg with this scared look on her face, and I freaked! I screamed at her, “What the hell did you just do?” And she was all “Are you okay? Are you okay?” I kicked her out of the room, I was in tears afraid that she had just sentenced me to another surgery to fix whatever it was she had done. I was afraid to move, I wasn’t in any pain thankfully, I was just crying out of fear. I remember screaming at her to get the fuck out and that she was never to come into my room again. I think she was quite happy to oblige as she practically ran out of my room. Another nurse came in, finished helping me get ready for bed after she examined my hip to make sure I hadn’t dislocated the hip. I asked if I could see a doctor in the morning for a more thorough examination to make sure she hadn’t messed me up too bad, I also told the nurse that I didn’t want the other nurse in my room ever again, who agreed immediately. I was assured that she would be dealt with and that she should have known better after I had told her what had happened. I saw a doctor the next morning, who had told me that yes the nurse had been in the wrong, upon examination there was no lasting damage that she very luckily only caused my hip to shift and that was the sound we had heard, but it wasn’t dislocated.

         I also remember that I was never so thankful for family and friends to help me out. See in the very beginning as I have mentioned above I had to have at least one nurse to help me to the bathroom, and once my cathedar was removed I really had to plan my bathroom breaks precisely because at that time I was suffering from loss of bladder control and my bladder didn’t wait for anybody! I remember buzzing for a nurse, and it was lunch time. Now everybody was sent to a cafetaria that was on a different floor from the ward and nurses went on lunch break with the patients. There was somebody at the nursing station at all times, but only to answer the phone. I remember getting back from lunch early and I had to go to the bathroom, I was sitting in my wheelchair, trying very hard to hold it, and I had buzzed. I got absolutely no answer, I went into a panic! I wasn’t on crutches yet, my walker was on the otherside of the room out of reach, because in my wheelchair I couldn’t get to it. I actually called my brother who was on the other side of the city to come and help me, I was pissed, I was crying and I didn’t exactly make it to the bathroom, so let’s add embarrassment on top of that even though I was alone. My loving little brother, got a speeding ticket because he sped all the way to the hospital so that he could help me go to the bathroom. Though he actually ended up helping me change out of my now disgusting clothes and into clean ones. When he got there, and saw the condition I was in he went and blasted the nurses for not answering the buzzer, and for the condition I was in. After that mom brought me Depends to use just in case I didn’t make it, or something like that happened again. My brother stayed with me for the rest of the day and helped me to bed.

         There were quite a few times when I needed somebody or something and my brother or parents were unable to get there in an emergency, so I had Art despite the fact that we were broken up at this time. He had told me once he found out I was going in for hip surgery that he would be there for me. I depended on him quite a bit, he always ran things in for me, he was there to visit and help me out when I needed it. He had told me that he was going to be there to support me, because he felt bad when we were together he hadn’t supported me like he should have and he wanted to make up for it. He totally proved himself to me at that point in my life.

         The more recovery continued, the less painful it became. And also with my heightened pain threshold, I walked through the pain like nothing especially after my staples were removed, and recovery sped up to the point where my physio couldn’t think of  any more challenges. I was sent home near the end of September on crutches, and continued physio with the physio therapist who helped me through my pre-surgery physio. She upgraded me to a cane shortly after.

         Now, it is almost three years since surgery, and I am doing amazing. I am practically painfree, every once in a while something gets pinched in a replacement like muscle or something, and I get a pain but it’s easily solved and everything is good. I am off all pain medications.

Chapter Thirteen - the Good, the Bad, the Ugly

         As a cancer patient you have good days and bad days.I called them the good, the bad and the ugly. For me there were more bad days then good, and I had the few ugly.

         For me the good days happened when I went home, I didn’t have treatment, and I could be myself, unfortunately those were few and far between. They happened even less frequently after my hips gave out on me, and I went into misery from the pain. But when I did have a good day, was when I found a mixture of pain medication and I didn’t feel pain for a few hours. Unfortunately, these days always ended in failure because of my feeling good, meant I would over do things, and suffer later that day or the next few days. Two examples, the pain killers actually worked, so both times I decided to leave my canes in the car and just go walking without, both times I fell down because I tripped over: crinkled carpets in a Walmart entrance the first time, landed flat on my face, and the second time I tripped over a tile in a shopping mall. Both times was my own fault, as despite not feeling any pain, I still didn’t lift my feet far enough off the ground and therefore caught both the carpet and the tile.

         At Walmart, the manager put me in a wheelchair, and begged that I didn’t sue. I wasn’t going to cause as I said it was my own fault. The poor greeter at the door tried to pick me up off the ground but of course grabbed me by the arm that had my picc line in it, and therefore I was yelling at her to let go, poor girl was scared out of her mind. Mom was thankfully behind me, and quickly explained why I was yelling and in our own special way, she got me on my feet. Mom got really good at putting me back on my feet as at that time I fell down a lot, because my balance was so bad that I could just be standing in one spot and suddenly off I go sideways, and just fall over. Though I do have to say, that after my humiliation of falling on my face, and finally got up the nerve to go back, the carpets I tripped over were nailed to the floor and flat.

         As for the mall, I had gone on ahead to meet mom in Zellers, and feeling as good as I did that week I felt like I was on top of the world. There was a lady behind me with a ton of kids, and she was in a huge rush. So at the top of a flight of stairs that I was headed for, right in front of the dollar store, I tripped on the tile. By this time I had gotten so used to falling, I didn’t bother stopping myself as that always seemed to hurt more than the fall itself, I just bent my knees so I would fall on them instead of my face. I was swearing a blue streak as soon as I hit. This lady with all her kids, and the people in the dollar store didn’t even come to my aid, or at least ask if I was okay. The lady in fact said “You have to be kidding me, okay kids down the ramp, come on let’s go.” My response as I watched her rush her kids off was “Don’t worry I’m fine, sorry to inconvenience you, bitch.”  And while people whispered and stared and just kept going, I crawled to the side where a ledge that contained plants was and pulled myself up off the ground, I sat on that ledge and held back tears as I basically did a body check to make sure I was still in one piece and to let the pain fade. Mom came from Zellers wondering what had happened to me.

         After my good days of walking without my walker or my cane, I always paid for it. I would always tell mom, “next time I get the bright idea to go without, or to walk for that long, hit me… hard!” Her response was always, “Someday you’ll learn, besides when it’s a good day, it’s hard to tell you no, and you won’t listen anyway.” Oh the wisdom of mother’s and naturally she was right.

         Other good days consisted of my best friend spending weekends in the hospital with me, and there were good times. A lot of our best sleepovers happened in the hospital believe it or not. And when Charles visited before and after my stroke.

         My bad days were a mixture of things. When I spent time in the hospital they consisted of days in bed, days where I couldn’t eat, days were I was so tired I couldn’t get out of bed because I was exhausted and nauseous so I was getting rounds upon rounds of gravol through IV, and let me tell you liquid gravol knocks you out! When I wasn’t in the hospital, my bad days happened the day after a chemo treatment, when I couldn’t keep food down, a day of constant falling, a day of stuttering and unable communicate properly, getting bad news from the doctor or them not listening, the pain being worse than usual, days where I just felt off and not myself, and that’s just to name a few. People knew when I would have a bad day, because I would get withdrawn, snappish, grumpy and miserable.

         My ugly days happened during my stroke, near the end of the five years before my hip replacements cause the pain had basically taken over to the point I was so miserable people couldn’t stand to be around me. The days I had my hip injections. Days that the testing was just grueling like the bone marrow biopsies, the intrathecals, and days that I just lost it and would cry on end for no reason at all. A couple of those days happened when I was in the hospital. The first one happened, when I had to go for a test of some sort, I had just been admitted into the hospital, and mom said she would be there. She hadn’t shown up, I was getting panicky. I bawled my eyes out to the psychologist that was on the ward. As it was I went for the exam and when I got back mom was there talking to the psychologist about my breakdown. The second time, I was being taken back to my room by a porter. I had gone for an exam, and I had waited for a long time before they did it as they had forgotten about me, and I had gotten some bad news on top of it all, and it was just a really bad day all around, and before we got on the elevator I just started bawling my eyes out. I knew he was uncomfortable, but he just pushed my wheelchair off to the side, and asked me what was wrong. He just listened while I babbled on about what was happening and all my frustrations. I remember him just kneeling in front of me patiently, and he said a few words of solace and told me not to give up yet, and that everything would turn out in the end. He waited until I was done with my crying and asked if I was okay to continue on, and then he took me back to my room.

          These are just a few examples of what life was like for me dealing with the chemo, stroke and pain before surgery.