Side effects begin

I had planned for my next post to be about side effects that ensued after my first treatment. It is ironic that an ongoing side effect (8 years of them) is what has finally gotten me to sit down and write again.  Recently I had a night terror. They use to be fairly regular once I had finished treatments, but it has been the better part of a year since having one. They always consist of being back doing treatments, or having no hair, or of the ongoing fear that I always have; relapsing. This one was a relapsing one, and I woke up with tears running down my face and sweating uncontrollably. It is an absolute awful feeling when they happen, and it was one I couldn't shake all that day. But it did give me that kick to sit, write, and give my mental health a bit of therapy. So on with my story.

The day I left the hospital after my first treatment, we were prepared for the worst. I hadn't been stomach sick while actually receiving the chemo, but we figured it was only a matter of time before it began. We had filled the anti-nausea pill prescription and was ready to get that in, assuming the reason I wasn't vomiting yet was because they had given me the same thing at the hospital. But we weren't really sure what to expect, so we returned to my apartment to watch and wait (theme of the day). 

That first evening was pretty uneventful. I lazed around and watched t.v. I drank lots, and flushed out my system of all the drugs I was after having pumped into me. Lee and his parents who were in town for the weekend dropped by to see how I was, but there was very little to report. Around 8 or 9:00, I got my first wave of nausea. I left the living room and went into the bathroom. I remember looking in the mirror and thinking that this was it. This was the start. I sat on the edge of the tub, waiting for the nausea to turn into vomiting. I sat. I sat some more. And then it passed. I no longer felt stomach sick. I didn't throw up. I figured it was the beginning of a long night, but alas, I slept like a baby that night. 

The next morning, I still felt fine. I was eating light meals. I felt no different other than now when I laughed, the wheeze was no longer apparent. They had told me at the hospital that patients of lymphoma that have masses in their neck or arm pits, have actually watch it shrink during their first treatment. Since mine was in my chest and I couldn't see it, so I didn't know if it was shrinking or not. But the absence of the wheeze when I laughed actually meant that my mass wasn't squishing my left lung quite so hard anymore! At the time I wasn't sure if this was what it meant, but I did know it felt easier to breath. Since I felt no worse for wear, we did what anyone else in town would do on a Saturday; we went to Costco! We went, got what we needed and I still felt good. We decided to run a few more errands. By around supper time, it was me who suggested we go out for supper. If I wasn't stomach sick, might as well take advantage of it! I will always remember that meal at Don Cherry's because it was where my first change in taste of food occurred. I had a pasta with chicken in it, and the chicken was absolutely disgusting tasting to me. I had others try it as well, but it was only me that found it tasted funny. Again, at the time I didn't know this was because of the chemo. But looking back this became a common occurrence and I can now say that it was that night it happened for the first time. 

This is how things continued the first couple days after chemo The hardest/worst part of those days was getting the prednisone pills in. I easily take pills, but these were the hardest pills to swallow. I use to have to work to try and get them down and they tasted awful and were always getting caught in my throat. I had been given the advise of a patient that she use to use fruit roll ups to help her when taking them. I took that as she use to wrap the pills in fruit roll up and swallow it. So that's what I tried, and that's how I almost choked that day. Mom had to do nothing short of the Heimlich maneuver to get it back up and I thought how the world did that person do that to get the pills down? (Turns out she would work to get them down and then suck on the fruit roll up to take the taste of the pills away quicker.....such details she left out the first time). I couldn't wait for the 5 days of having to take those pills to pass so I could be done with them. But it was when they were gone that the other symptoms began.

That Monday morning I returned to school and mom returned to Bishop's. I had no side effects and all seemed well. I went back to classes and continued as if nothing had happened. I didn't miss classes on Friday for chemo as I was suppose to be completing observation days but had been exempted from  them in order to do chemo, and staying away from children and germs schools was necessary. Thoughts of well if I only got to go every third Friday for chemo, this won't be so bad floated in my mind. I took my last day of prednisone and things looked great. Until the withdrawal of that medication kicked in. My body began to feel like it had been put through an intense week long workout. All my muscles ached, I had sharp pains going from my jaw up into both ears, and I felt like I had been hit by a truck. I would go to class, come home and pass out wherever I was. I thought I had an ear infection or some kind of a bug. I even went to a doctor on campus and he looked in my ears and said all was fine. Once again, I didn't know all of this was a combination of withdrawal from the prednisone and the hit of chemo that was draining me. The biggest side effect came when I was sat in class, looking at my text book and all the words went blurry. I squinted and tried to focus but nothing would make it better. I looked up at my prof/the board and it was just blurry images. This was very scary for me as I hadn't been warned of this being a possibility. I was driven home that day as I couldn't see well enough to drive, and I feared that the treatments were catching up to me.

After some investigation, I learned that vision problems do happen to some people after chemo and that it would be temporary. It ended up lasting for about three days and just as fast as it went, my vision did return. As my vision returned, my muscles began to be less sore, and I was pretty ache-free. My energy level started to rise and I was feeling pretty decent in comparison to the previous week. I still had not vomited, and other than the one bout of nausea, I had no stomach sickness. Again, at the time I still anticipated it, but this was the norm of how my treatments went. I was one week post chemo and starting to feel like myself again. As good as I was beginning to feel, I still had that nagging voice of the nurse telling me that when I returned for my second treatment I wouldn't have any hair left. Every day I would stand in front of the mirror and tug on my hair a little, but none were coming out. I decided that I would focus on how good I was feeling, return to school and get caught up from my days of no vision, and hope that I could be a lucky one that held on to my hair. But not everything could be so smooth, and it wasn't long after that I would realize how cruel the treatments could be.

-K

**Thank you again to all those who continue to read my thoughts and experiences with this horrible disease. I appreciate every kind word I've received from people who take the time to read. Please continue to share my blog. I continue to hope that it can help someone else in a similar experience. 

The battle begins: Me VS Chemo

Once again, I start a new post with apologies of it being awhile since I last post. I am still alive and kicking. My absenteeism from writing is all due to normal, every day life things, keeping me busy and not allowing me to sit and write. Sometimes it's nice to get caught up in day to day activities, but I do apologize for the lack of writing. It is something I benefit from and thoroughly enjoy. So even though we are entering a very busy time in the school year, I will be trying to make a better effort in writing and posting. 

My story picks up where I was finally through with tests, procedures, and the long waiting that comes with being diagnosed. I was finally ready to begin the chemo process.....and I was scared shitless. I knew it would entail receiving chemo through an iv, and that its not really a quick process. (Since enduring cancer, I have been shocked by how many people (adults) were not aware how a person receives chemo. I am very envious of these people as I can only see not knowing means they or their families  haven't been exposed to cancer. To be so lucky). The actual part of having chemo; the needles, drugs, etc did not bother me. It was the side effects that would  come with it that had my head spinning. I was having a real hard time dealing with my hair was going to fall out. Dr. A had told me that there was a good chance it would fall out, but that some people held on to their hair, or for some, it only thinned out. I was holding on hope that my long brown hair would be spared. 

My chemo plan called for me to receive chemo on Friday, and continue every third Friday for 6 to 8 treatments. They would redo all the scans after 4 treatments, and if the cancer was all gone by then I would only have to complete 6 rounds, if there was still cancer present then I would complete 8. At this point I  didn't have the results of my bone marrow test, but we were going on with the first treatment. For my first treatment I was to have it up on one of the floors in the Health Science Centre instead of the ambulatory clinic where Lymphoma patients normally go. The reason for this was because they would be giving me the chemo at a slower rate and would be watching for a reaction to any of the drugs that were going in. Going in that morning we knew we were there for the day, we just didn't know what to expect.

Mom came with me on that first morning. Dad was still home and was coming later, but for everyone else, I wanted them to continue with life as normal as possible. I forced Lee to go to classes, and Karla to an O.R conference. I wanted to maintain as much normalcy as possible, but as mom and dad were in from out of town, they were the lucky winners to join me. I was told to be at the HSC for 7:30 am with a projected start of 8 am. After registering, we went up to a floor where we were greeted by a nurse who introduced herself (it's shocking how many names I have forgotten) and sat us down at a desk that was in what looked like a normal hospital patient room, other than having that desk. She began explaining to us about Lymphoma. She gave me a useful resource about different types, highlighting the kind I had, the stage, and then began explaining the treatment. The chemo, I learned was called R-CHOP and that each letter represented a different drug. She explained which ones did what and what side effects come with each one, and also gave us pamphlets on each. The pamphlets would later come in handy because once she said which one would cause hair loss, I didn't hear much more. I worked up the nerve to mention how Dr. A had said some people didn't lose their hair or it only thinned, but this nurse shut me down point blank. She told me very matter of factly that when I came back in three weeks for my next treatment that I would't have hair or that it would be almost gone. Of course I burst into tears, and mom cried right along with me while trying to ask more questions. *I know hair loss is almost always a given, and that this nurse would see it day in day out, but a little bit of compassion/empathy/anything would of gone a long way in that moment*. The nurse continued to talk but I don't remember much else after the mention of becoming bald. 

After what seemed like a lifetime, I was situated onto a hospital bed. I thought it was odd as I had seen inside cancer clinics and the patients all received chemo sat up in recliners. I didn't bother to question this and just sat up in the bed. The nurse started my i.v and gave me a cup of a dozen different oral meds. Some of the drugs from the letters of R-CHOP were in there, along with a med for allergic reactions. Once I had taken the oral meds, the nurse put on a cover up over her clothes and a pair of gloves before handling and hanging the bag of chemo. She also put a black bag over the bag of chemo as it's light sensitive and also, it makes any other nurse who came in aware of what was going in so they too could take the proper precautions before touching it. I remember thinking how unsettling it was that people needed to take so many precautions in being around the chemo, but it was going to be going directly into my veins. There wasn't much comfort in that. At this point the chemo was now going into my body. There wasn't much to feel. It was now just sit, wait, and see what/if anything happens.

Shortly after I started another patient came into the room for treatment. I was very aware that she was there for chemo, and it wasn't her first time. She walked into the room with a bucket hat on her head and there were very thin, straggles of hair come from beneath the hat. Anyone who knows me, I am bad, VERY bad, at hiding my facial reactions. I can only imagine the look of horror on my face. It was like I was seeing a preview of how I would be the next time I came in. I am unsure how I refrained from doing so, but all I wanted to do was rip the i.v out of my hand and run. I just wanted to run away from the entire situation. I should of been attending an observation day at an elementary school, but instead I was here, in a hospital bed receiving chemo, trying to get rid of the cancer that was in my body. I remember closing my eyes in attempts to keep tears from coming out and I know my mom could see I was upset again. She tried to talk to me, distract me, keep us both focused on anything else than what was actually happening. She was really great. I can't imagine what its like to watch your child go through something like this, and I wish she never had to. 

I can't say that the day was boring. The unknown was keeping me on my toes. There wasn't much for me to do other than lie there while the chemo went in, but there was constantly someone poking, prodding, and if nothing else, just looking at me. I was under constant watch by the nurse. Dr. A also stopped by to check in on me and see how it was going. I'm sure he does that with all of his patients, but after the reaction of the nurse on the day of my bone marrow aspiration, I remember wondering if this was a special trip. He didn't stay long, just checked in to see if things were going well and was pleased that there were no reactions thus far. At any given moment there could of been upwards to five people just looking at me. That was a little awkward but I tried to stay occupied with magazines, sudoku, and listening to the hustle and bustle in the room. I wasn't the most social, but mom did talk with the woman in the bucket hat. I learned that she too had lymphoma but that was the only similarity in us. She initially had been told that she had the same as me; DLBC, but on the day of her first treatment, just before it was due to start they told her she actually had Burkitts lymphoma and her plan changed drastically. Her type of chemo changed, she had to be admitted in order to receive the treatment, and things weren't so straight forward anymore. I had watched earlier how she took tubes out of the neck hole of her shirt and the nurse hooked those tubes up to and i.v pole and that's all there was to starting her treatment. She explained that even though she herself was a doctor (a psychologist), she was petrified of needles and opted for a port right away. Also, her chemo takes an entire weekend to be completed so an i.v wasn't really ideal. I remember feeling ashamed of my earlier thoughts of pity of having to go through what I was going through. I was so far very straight forward in my treatment. Every time this woman spoke she mentioned of another thing that had gone wrong or a complication she faced. I began to see that there was bright sides to my situation. 

The day continued. Everyone continued to look at me, and nothing short of a cough or clearing my throat could make people jump. I probably could of had a lot of fun with that, but I tried to remain still and quiet. I didn't have any reactions to the chemo. Much like the people staring at me, I kept waiting for something to happen to my body, but alas, nothing. Dad came not long into me starting the chemo. Between the three of us, we would chat. I remember being offered lunch but afraid to eat much as I was sure I would be vomiting soon. We mostly stuck to snacks from the vending machine. When the bag of chemo finally dripped it's last ounce into my veins (I would of never been able to see that since the black bag covered it, but the machine beeped it's alert), I thought I was all done. Wrong. The nurse explained I had the CHOP part of the chemo in, but the R (rituxan) now had to go in through a push system. She brought a huge syringe with what looked like kool aid in it, and sat by the side of my bed. She unhooked my i.v from the bag of chemo and hooked it up to a bag of saline and another port to the syringe. She would allow the saline to go through my i.v and then would push a small amount of the rituxan through, and then allow some saline to wash that through. This repeated over and over until the syringe of rituxan was empty. It took a long time but it was probably the most interesting of it all. Once again, no reaction to this drug. I was very fortunate in all this going so well. Without considering any of the many reactions my body could of had, I just really had anticipated vomiting throughout the day. But I (thankfully) had a very uneventful day.

Once the treatment was completed, I felt about 20 lbs heavier. I had a lot of fluid on and that needed to be gone immediately. I was instructed to drink a lot of water to flush out everything I had just taken in. I was warned that my urine would be a red colour because of the rituxan and that I would know that was flushed out when I could pee and it be a normal colour again. But I was to continue to drink a lot even once that colour was gone. The drugs that were in my system were very harmful to my organs (theres that warm, good feeling again), and I needed to flush them out. The quicker the better especially for things like my liver and kidneys. Besides the instructions to drink lots, I was given prescriptions for follow up meds that I was to take for five days after that day, a prescription for anti- nausea meds, a prescription for something for constipation, and a list of possible other side effects and what to do if they occur. Other than that, we were told we would hear about a follow up appointment for my bone marrow aspiration results, and they would see us in ambulatory in three weeks for my next treatment. With that, we were free to go. 

Mom and I walked out of there to the unknown with my loot bag of prescriptions and information booklets and pamphlets (worst loot bag ever). We had no idea what to expect in the coming days, but one thing we could do was cross off one treatment. One down.....five (or seven) to go. 

-K

Thanks again to anyone and everyone who continues to read my story. I promise to try to post on a more regular basis. I appreciate every single person who takes the time to read. Feel free to share with others :) 

8th Birthday

With today's post, I decided to not continue with the telling of my cancer story. Instead I'm going to write about the significance of today. So I guess I should warn with a *spoiler alert* to my story, but today is the anniversary of being told that I was cancer free. 8 years ago today, I sat in a doctor's office and they told me that there was no active cancer in my body.  It is very hard to put into words what that moment was like. Much like when I was told I had cancer, being told it was gone had that same non-sinking in feeling. It took a few moments for me to actually process what she had said. Eventually, every emotion spilled out through tears. The months of holding them in, all spilled out in that moment. Relief, gratitude, happiness, joy, bliss....too many emotions to process so I resorted to just sobbing. Ever since I had been diagnosed, I felt like I was wearing a weighted vest that was constantly hauling me down but instantly it felt like it had been lifted. It was like I could finally take a full, deep breath and not have worries, doubts, or fears nagging me. It was the most powerful moment I have ever experienced---it was like being given a new birthday.

Now, 8 years later, I still feel just as grateful as I did that day. I also have many thoughts and feelings that aren't so enjoyable. For any cancer patient, all they want is to be given back their life and to be cancer free; I was lucky and got that. Now, I am greedy. All I want now is for everyone who is faced with cancer to get to have their moment and be told it is gone. It is something that no one should be denied and I have a lot of trouble accepting that some people don't. Survivor's guilt is an awful thing. It is something I deal with every day but it's always more evident to me around my "birthday". I'm sure many people will read this and think "boo hoo, you've been given a second chance at life; how awful for you". Obviously I remain full of gratitude over that fact, but it doesn't help ease my guilt. People have said to me that I shouldn't feel that way, or that I need to stop feeling like it but essentially it is the same as someone hitting me with a bat and telling me to stop feeling pain. I have no more control over feeling this guilt than I do at controlling any other feelings I have. 

I can remember when I was doing treatments, seeing an article online about depression after cancer. I remember saying "what the hell do they have to be depressed about? I should be more depressed then them, I currently have cancer and they don't". I vowed I would't be a person who got depressed if I was lucky enough to become cancer free. But like survivors guilt, depression isn't something you can control. I don't know if I can say I have ever been full blown depressed. I more so think, I actually took the time to assess and think of everything I had been through once it was over and many a time I would come up with the "Holy shit! I've been through something bigger than myself" kind of thoughts. It wasn't until after cancer, that I really dealt with my thoughts and emotions about it all. It is something I continue to do today.

Talking (or in this case, writing) is what I find the best in dealing with these not so pleasant thoughts and feelings. Support groups were never told to me during cancer, and then after when I felt like I could use someone to talk to, I felt like I wasn't the target audience anymore as I no longer had cancer. I felt like I was passed over in that sense, but I did find some great groups online that had many people like myself. People with cancer, survivors, and family members of people with cancer all sharing thoughts, concerns, and experiences. They were and continue to be very helpful. It was just this week that one of the groups posted this image This image received 692 likes and had 186 comments about people's own experiences with it. It is nice to know that I am not alone and that there are others  that relate to it. 

The intent of this post is simply to help people understand what survivors guilt is and that it is something out of my control. I am still celebrating today, and enjoying it to the fullest. I remain thankful and grateful for every single day. I am just raising awareness of this issue and hoping that someone who may also feel like this will know they are not alone. As always, my main goal is to help spread awareness in hopes more people will get to experience their own new birthday as well. 

Once again, thank you for reading my blog! I fully appreciate people reading and sharing it! Next post, I will continue on with my story. For now, I eat cake :) 

-K