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

Scans, biopsies, and chemo....oh my!

As per usual, I need to apologize for the hiatus. A combination of starting a new job, the holidays and limited access to my computer caused me to be absent from my blog. But with a wonderful gift of a new macbook (thanks hubby), I will have more opportunities to write! So on with my story.

After spending the Thanksgiving holiday with family and friends, where I spent the majority of time thinking about how the next holiday I would come home for (Christmas), I would do so with no hair (it was an obsession of my thoughts); I returned back to St. John's to attend all my appointments. My dad also flew into St. John's to meet us. Now that we knew what was going to happen, he came home to be with us. When I saw him for the first time, my greeting to him was "hard way to try to lose a bit of weight hey?". This was my attempt to not be upset around family but of course there were tears when we hugged.

 My first appointment, was a gallium scan. I had never heard of such a thing before, but basically it was a scan that involved me being injected with a solution that contained radioactive isotopes, waiting 48 hours, then returning to the hospital to have the actual scan done. The scan involved me lying down on a table and having a machine go over the top of me slowly (took about 20 minutes), but it didn't have a claustrophobic feeling as I wasn't enclosed in anything. The scan would be able to show where cancer was present in my body because the cancer would absorb the radioactive isotopes and it would "glow", as I was told. I'm sure there is a more scientific way of putting that, but thats what I took from it. Now we already knew there was cancer in my body, but this scan would show if it was anywhere else in my body or if my lymph nodes were involved, and this would then give the doctors what stage my cancer was in. All throughout this process, I wasn't really worried about the results as I was still kind of in a bubble of numbness. I was just showing up to appointments and doing what they told me. Fortunately for me, the scan revealed the cancer was contained to just the one mass in my chest, putting my cancer in stage 1.

Up next was a bone marrow biopsy. This was a procedure that I was very nervous about. It is sometimes nice to not know what's coming and I felt I knew too much about this one. I knew it was a relevantly straight forward procedure, but I was really nervous over the fact that a needle was going to go through my bone, and that I would be awake for it. At least I knew that fact going in this time, and it wasn't an unpleasant surprise once I was in there. While sitting in the waiting room, I can remember just watching the clock. All my thoughts were racing through my mind, my nervousness causing the heights of anxiety, and once again, the words "I'm fine" being my response to being asked how I was. Of course, this was the appointment that I was late getting in for. Every minute that passed, it took all my strength to not bolt from the waiting room. I had been told that some people have described having this procedure done as nothing more then having blood drawn. I held on to that hope but I would soon be let down.

I was finally called in and was escorted into a room where the procedure would happen. Mom, dad, and Karla all came to the appointment, but only mom came in with me. Essentially all I remember is a room with a table and how nervous I was. I was instructed to lie on my side, and they draped a sheet with a hole in it over my hip. They sterilized the area and moved on to putting in freezing. This wasn't the most pleasant feeling. It was the same burning feeling I had had in my chest during my ct guided biopsy. Once they allowed the freezing to set, they started with extracting the bone marrow. As I was on my side, I couldn't see what was happening, and nor would I look if I could. I remember the pain of Dr A trying to get into the bone. Even with freezing, I was still feeling pain. I tried not focus on it, and both my mom and the nurse were trying to distract me from it, but with the pain I was feeling and the force Dr A was using trying to get the needle into my bone, it was hard to focus on what they were saying. I remember mom saying that the next time she would hold my hand like she was then would be when they put an epidural in for when I had children, and I remember the nurse trying to get me to talk hockey. It was hard to focus on them, but their effort was appreciated. Finally, after all the pain, Dr. A had finished, or so I thought. He then announced that the sample he gotten wasn't good and he would have to go back in. By this point, tears were rolling down my face but we repeated the procedure. Once again, there was pain and forceful pushing, and all the while, both me and mom cried while she held my hand. Dr. A is a not a very big man and he worked like a dog to get a sample from me. Finally, he announced he had it, and with that, he bent down and kissed my cheek. This was very uncharacteristic of him. He was known for being cold and non personable, but that act of kindness was so dear of him. He knew the pain I was just put through as he said I had the hardest female bone he has ever had to get through. A fact that will be great when I'm 80 and I fall, but on that day it wasn't beneficial for me. When Dr. A left the room, the nurse looked at me in disbelief. She couldn't get over that he had shown affection towards me. She said that she has been his nurse for 20 something years and if she just stopped showing up it would be weeks later (if ever) that he would say something along the lines of "what ever happened to that nurse that use to be here?".  I laugh when I think of her saying that now, but at the time I was in a lot of pain to see the humour. We left the hospital that day with me hobbling along, and we returned to our apartment for me the rest.

This was a jam packed week where I spent a lot of time in the hospital. All of these things had to happen to get to my first chemo appointment that was to happen on the Friday of that week. I learned more medical terminology and experienced more procedures in less than a month then I had throughout my whole life. My bone marrow biopsy results wouldn't be back for a couple of weeks, but the plan of chemo was to go ahead as scheduled. I wondered how many more unknowns could I face after the week I had just had, but this was just the beginning. Up next, round 1 chemotherapy.

-K

Once again, I would like to thank everyone who continues to read my blog, I appreciate every kind word I receive and I hope me sharing my experience can help others in similar situations. Hoping everyone is enjoying the holidays and wishing good health to you all in the new year! 

Acceptance

I want to apologize for my hiatus from my blog. This time of year is always full of so many memories, so sometimes it is hard for me to put my thoughts into words. I sat down multiple times to try and create another post but found it difficult. I am back now and will try to continue to post regularly. Now back to my story....

After receiving the phone call that I had an appointment with Doctor A, I didn't sit and cry. I was fully aware that I was going to hear that I have cancer but I think I was numb. Things still didn't feel real to me. Other than chest pains, and a sometimes  having a wheezing sound when I got out of breath or laughed, I felt perfectly fine. People with cancer are sickly, aren't they? Not being able to accept that is what kept me from being fully aware or actually accepting what I was going to hear.

My appointment with Doctor A was in an examine room, and since they are not the biggest, I couldn't take my full entourage with me. So off I went with mom and Karla. I can remember sitting in the waiting room waiting to be called in and noticing the people around me. I was being seen in the ambulatory clinic so not all the people there were cancer patients. But some were and they sat with no hair, or had turbans on. I remember one woman in a hat explaining to a man next to her about how fortunate she was that her hair loss was only on the top of her head, so she can wear hats and no one can tell the difference. And she was right. Her hair was about shoulder length and I wouldn't have had any idea. But then my thoughts went to what was under the hat and it horrified me. I pictured the same happening to me and having to look at myself with essentially what would be a skullet. Fortunately I did not have to wait long before being called in, so I didn't have a long time to dwell on that thought but that image was now imprinted in my brain.

Doctor A saw me in an examine room like any other one but we just sat in regular chairs. He wasn't examining me today, just reading results. We gathered in the room and he was very direct, to the point, and laid it all out for us. My official diagnosis was Stage 1, Mediastinal Diffuse Large B Cell, Non Hodgkin Lymphoma. He went on to explain that the treatment plan for me was to receive chemotherapy and that it would begin the following week. The skullet thought popped into my head again here and I asked him about my hair--would I lose it? He told me that some people hold on to their hair, while others see that it thins out, and some lose it completely. I wish I could say that I wasn't bothered by this, but I was. I began to cry at this point and I didn't hear much of anything else. I didn't realize I was a vain person until that day, but losing my hair at the age of twenty two devastated me. Hearing a doctor tell me that, is what  made it finally sink in for me. Everything was becoming real and it happening quickly. While I sat and wept, Dr. A was explaining to mom that I would have to have a couple of scans and a bone marrow biopsy done before I could start chemo. He had all those booked and she was writing down times, where they would be and so on. A piece of advise for anyone going to an appointment such as this---take someone with you. I was absorbing nothing being said at this point. If it wasn't for my mom, I don't think I would of made those appointments. I do remember him saying that the type of chemo I would be receiving (there is more than one kind?!) was a kind that doesn't affect fertility and that I would be able to have children later in life. That should of been a bright side of all he was saying but in my state of mind in that moment, talking about having children was irrelevant. I was being told that I had cancer. Having kids was the furthest thing from my mind. I zoned out again, but I am sure everything he was saying was very important but I just wasn't hearing much of it. *The movie 50/50 does an excellent job of portraying this kind of appointment. You hear that the people are talking, but the shock/numbness you are experiencing doesn't allow you absorb anything being said. Great movie, check it out*. I do remember hearing that the form of lymphoma I had was one that was unlikely to reoccur once it was gone. Again, another good point. But I was thinking that doesn't help me now. Right now I have it and I couldn't see past that. I can't say how long we were in that room. Most of it was a blur and I was weeping throughout it. When the three of us got up to leave, Dr A touched me on the arm and made eye contact with me. All he said was "Karen, we are going to beat this". I just nodded my head but I can't say I believed him.

The three of us left the hospital, still crying, and returned to mine and Karla's apartment. Over and over in my head, I was thinking, I have cancer. I had so many different emotions flooding through me. I just wanted to run from it all, but obviously I couldn't. I went into my bedroom, closed the door and let myself have a good cry. None of this quiet, weeping bullshit I had done during the appointment. I put my face in a pillow and screamed out my frustration. I was 22 years old. Why the fuck did I have cancer? I've always had an active lifestyle and I didn't smoke. How the hell had this happen?  I felt an overwhelming sense of unfairness. I didn't want to die. This couldn't be how my life was written out. I wasn't finished University yet. I wasn't married. I hadn't gotten to do so many things I wanted to do. I sat and cried. My thoughts then went to my family, to Lee, to my friends. How terrified they were for me. How seeing me upset would cause them to also be upset. That's when I decided I wouldn't spend my time sat in my room, crying and upset. I didn't want to see everyone else upset so I was going to do my best to also not be. I left my room and went out to Karla and mom and said to them "No one better make a fucking Facebook group about me and cancer". I think that's the first time we laughed in days. But although funny, I was serious. I wasn't going to be hiding the fact I had cancer, but I also didn't want to be the talk of everyone. I wasn't ready to have it all on display, and that stayed true as here it is, 8 years later, and I am just now able to open up in this way. I think that crying session and having time with my own thoughts was the turn in my "I can't believe this" way of thinking. I had a diagnosis, a treatment plan, and it was underway. I knew no one deserved to have to go through anything like this, but people do. I was starting to accept what was happening.

Myself, Lee and Mom were hoping to leave for Bishop's Falls that day after my appointment as it was Thanksgiving weekend and we were going home for it. But I had to have another (I should of kept count over the years) cat scan done the next morning. From being so tuned out at my appointment, I didn't even know why I was having another one. So we postponed until the next day.

That morning I went back to the hospital, drank my cups of contrast that I was becoming accustomed to, had my CT, and we hit the road. It was Friday, and I was able to go home for the holiday. Since Monday was the holiday, I didn't have to be back at the hospital until Tuesday when I would be having a gallium scan (wtf is that?), and Wednesday I would have my bone marrow biopsy done. The two of those needed to be completed so that I could start chemo on that Friday. So we went home to have our last "normal" holiday.

We got home and I was greeted by my friend Amy who had the most Amy-like card made up.

Obviously I still have this. It was too good not to keep. But on that day, this is exactly what I needed. Thank-you Amy. Humor was my new way of dealing with cancer. I was not going to let it take away my laughter, my spirit, or my laid back way of life.

I went to bring Lee home and had to also had to stop in a convenience for milk. Why does that stand out in my mind? Well my hometown is a relatively small place. And even though I was 4 hours away, going through all this, the majority of the town knew what I was going through. I think this aided in me being so private about it all. I didn't want to be the talk of the town. But once I entered that store that day, I knew that I was. I walked in and there were a few people in the store. When they saw who had come in, it went completely silent. I didn't overly know these people, but I knew they knew who I was. It was the most awkward experience of my life. It lead me to believe that I might of even been the topic of conversation before going in there. So I just went to the cooler, got the milk, paid, and left. No one spoke to me, and I didn't speak to them. I later learned that I was the talk of a lot of people, and friends and family were being asked questions about me. Most times those questions also included things like "well I heard they can't do anything for her" or "I heard the surgery (?) didn't go well", so all kind of things were being twisted about what was going on. No wonder the people in that store looked at me the way they did...they had me one foot in the grave. This is my love/hate relationship with small towns.

After such a bizarre experience, I brought Lee to his house. In that car I told him how scared I was and wish it wasn't happening. In previous days I had told Lee that I would hold no grudge against him if he wanted to leave. I didn't want him to go through this, and if something were to happen to me it would be too hard on him. He had told me the only way he was leaving me was if I broke up with him, and that wouldn't stop him because he would just be by every day anyways. Well that night, in fewer words, he reinforced that he was in it for the long haul. He told me that I had to promise him that when WE beat this, that I would never do it to him again. I don't think he could ever know what those words meant to me. I had so many uncertainties facing me. But one thing I did know, from those few words, I was sure I would marry him one day.

My world was changing at a very fast pace and I had zero control over any of it. But the first step in getting better, is accepting what you are faced with. I was ready to take this on. I was still scared shitless, but I was ready to go. One last weekend home with family and friends. Tuesday, it was go time.

-K

Thank you again for reading my blog! It continues to help me and I hope you all are enjoying reading my story. Thank you again and feel free to share!

The waiting game...

Once again, I want to thank everyone who has taken time out of their day to read my blog. I am blown away with how many views I am getting. It is so appreciated! Continue to share my story, especially with anyone you feel could benefit from hearing it.

Now back to 2007.

After I had my biopsy done, there was a lot of time to sit and think. The doctor I was under wanted me to remain in hospital until they had the results. To me, this was ludacris because for one, I didn't feel sick, and two, I could be attending my university classes. I was in my second semester of the fast track education program and had no thoughts of losing time there. So I was granted a few days out of the hospital initially. I "celebrated" my twenty-second birthday at home. The party that had been planned obviously was cancelled, and we just went out to supper. Mom was able to return to Bishop's to get things she wanted and needed, as the night she got the call from Karla at the hospital, she essentially hopped in the car and came on out. I got to go to a couple of classes and give my professors an explanation of my absences. This was essentially it before they had me sucked back into the hospital.

When I was readmitted I was able to go into a semi-private room with just one roommate. I was thankful for this as I hoped it meant the nights would be quieter. They might have been if I was put in the unit I was suppose to go on, but of course that didn't happen. My new neighbors average age was around the mid 80's, and quiet, they were not. The nights were always awful with sounds of moaning, people calling out to no one in particular I don't believe, and the one gentleman who during the day you didn't know existed, but once night fell he was constantly yelling "HELP! HELP ME! OH WHY DON'T YOU HELP ME?". My heart went out to him but I do believe he was like an infant with his days and nights mixed up! On top of all the sounds, I was being woken up multiple times a night by nurse to take my vitals. Yes, I know this is standard. I come from a house of nurses and appreciate all you do, but my temperature, blood pressure, etc. remained the same all the time as my only issue was the bloody mass in my chest! Help a girl out and just record same as before! I wasn't admitted long until Ativan became my new best friend at bedtime.

I was a very low maintenance patient and became one the nurses all liked to have. They referred to me as a "walkie talkie", in the sense I could walk on my own, go to the bathroom alone and could coherently express my wants and needs. I would see them walking some of the other patients in the halls, and my favorite I remember was an elderly lady (meanwhile they all were elderly) who refused to leave her room without her bright red lipstick on. I would see her day after day walking and always, her lipstick would be on point. Once when I passed her and said hello she greeted me the same but then looked down and with a horrified expression she yelled "Why am I in my pyjamas?!". I always think of her now when I see people sporting bright red  lips. I also learned that when your roommate gets a visit from a nurse who pulls the curtain around when she arrives, to get the hell out of there quick. There is nothing glamorous about adult diapering. For how quickly I could get out of a hospital bed and out of the room, I figured when this was all over I would be ready for a career in track and field.

I didn't find my time in hospital lonely. Other than the nights, I was rarely alone. My mom, Karla, and Lee were with me constantly. I would try to get Karla to go to work but she continued to come. I made sure Lee attended his classes, but other than that he was there. I had an over flowing amount of visitors come see me. For this reason, I spent a lot of time in the family lounge so that everyone could at least sit. I appreciated these visits so much. It would really break up the days for us. The continuous waiting was endless. 

My dad had returned to Alberta for work the week before I went in hospital. It took a lot to keep him there, but him flying home to sit around didn't make a lot of sense. Whatever it was in my chest, had to come out, so it was decided for him that he should stay there until we know what the plan was. I know that was torturous for him, to be away while it was all happening. We had each other, but he was alone.

Due to the floor I was on, there was rarely anyone in the family lounge. The elderly patients generally didn't have a big number of visitors at a time, so we kind of took it over. It abled me to not have to be lying in a bed all day (I still felt by no means sick), it allowed my visitors a place where we could sit, and it also helped me dodge the visits from the nuns. I hate to sound heathen-like, but I am not catholic, nor was I looking for someone to come pray with me. I think it is wonderful what they do, and I witnessed so many people who benefited from it, but I think when being admitted there should be somewhere you can opt out of those visits. I felt praying was being forced on me so I did my best to avoid having to say no thank you to a nun. It was a good day if I returned to my room and there was a note saying "Sorry I missed you, Sister Flo". I also didn't look no more like any other of the patients so if they did see me, they didn't know I belonged there. Advantage- Karen.

A little more than a week after my biopsy, a doctor came by and sat down with us. She told us that the sample they collected has led them to believe my mass was one of two things; either a tumor of my thymus, or lymphoma. They were not certain at this point and more tests needed to be performed but they were leaning towards lymphoma. This didn't hit me like a ton of bricks at this moment because I knew it had to be something and I had no clue what lymphoma was. I think back to how naïve I was in this moment. I believe I lost a lot of innocence in the next coming words. She went on to say I would be meeting with a surgeon at this hospital in the possibility that its a tumor of my thymus and that doctor would remove it. I would also be sent to the other hospital in the city to meet with a doctor up there who I would then deal with if it was lymphoma. There would be no surgery if it's lymphoma, I would receive medicine. At this point, I was thinking medicine? Sign me up, that's not a big deal! I blame my innocence here, and the fact the doctor didn't say lymphoma is a form of cancer. So when I asked what kind of medicine and she responded with chemotherapy, I completely broke down. I'm sure you are reading this and thinking how could I be so shocked? But I honestly didn't feel I had cancer. I was 22, I wasn't sick. I just couldn't believe that I could have cancer. I'm sure this doctor said more after this, but I can't tell you a word of it. I don't think she stayed much longer. I just remember how upset we all were. I know Lee left to make a phone call (no cell phones used in the hospital in 2007), and later I learned he called home to his family in Bishop's and that's where he broke down. He hid it from me so well, I was none the wiser. I also remember me and mom sitting in my bed and just crying so much. She was telling me how she wished it was her, and not me. To this day when I think of that moment I cry. I can't imagine how awful and helpless it is to watch your child go through this, even if I was considered an adult. It was one of the hardest days so far, and I don't remember much more of that day.

It was hard to say of the two options, which one I was rooting for. It felt as though a coin was being flipped and it could go either way. I couldn't say that I was hoping for cancer, but the thought of having my chest crack scared the living shit out of me. It was a thought I was having trouble wrapping my head around, but when the other option is cancer, you don't know which to root for. It was a game of "Would you rather..." that really didn't have a clear winner.

In the coming days I met with the surgeon at that hospital who would remove my mass if it turned out to be a tumor of my thymus. This was an interesting meeting and I don't remember much about it, other than her introducing herself. The interesting part is, this woman was someone who I played ball hockey against for many years. As she was a goalie, she didn't recognize me, but all I could think was "A goalie is going to crack my chest and remove a tumor...wtf?". It was one of the oddest days in hospital, which ended (after a tip from a nurse) with a game of a rumoli and a few drinks of rum down in the vending machine area of the hospital. Of course this was kept secret, but with what we were dealing with, I think it was more than justified.

The next day we were sent up to meet with a hematologist who would take on my case if the biopsy concluded that my mass was in fact lymphoma. He was an older man who laid out all the facts point blank to us. If I were to return to him, I was more than prepared. I learned a little more about what lymphoma was and how there were different types. He didn't go into much more detail, just that I would need more scans and a bone marrow biopsy done if I return. I may never see this man again, but if I do, it meant I had cancer.

When we returned to the hospital we really put a lot of thought into how pointless, me being admitted actually was. I could be waiting at home for a phone call telling me that I was either seeing doctor M for surgery, or doctor A for chemo. It had been days since I had last seen the attending that was looking over my case. Each day I was being told she would be by to see me and never showed. Apparently I was sick enough to be in hospital, but not sick enough to be a priority to be seen. With nothing less than a threat of that we were leaving the hospital, the doctor finally came to see me late one evening. After much discussion I was finally being discharged and granted the ability to wait at home.

Once I was home, we returned to a somewhat "normal" life. I went to my classes, Karla to work, but mom stayed with us in St. John's. We knew the call was coming soon, so there wasn't a point of her returning home, four hours away. We didn't wait too long.

On October 3rd, the phone call came in with an appointment for me.  It was for the next day, and it was with doctor A.

I. Have. Cancer.


- K

Biopsy

The last week has been quite an eventful one so I have been limited to the one post. I had the pleasure of turning 30 and getting spoiled with a surprise party and things that have kept me busy. On a much sadder note, I received news on Saturday of the sudden passing of a former colleague/principal. Gone far too soon, he was one of the greats. I've been filled with such confusion and many emotions and unsure how to deal with it all, so I am turning to my writing for a therapy session. While thoughts of him are never far from my mind, I'll continue with my story.

First of all; thank you. thank you, thank you for all the positive feedback from my first post. I've had messages, calls, and even people stopping me out and about, saying the kindest words. I greatly appreciate it and am very encouraged to continue to write. I feel if more stories like mine is shared, the more equipped people will be if they are ever faced with a similar situation.


Back to September, 2008.


I was admitted into the hospital on the 20th of September, but because of lack of beds in the hospital, it wasn't until around 5pm, so no biopsy was to be done that day. I also got the pleasure of going into one of those rooms with 3 other people as there were no private or semi-private available, and also was put on the wrong floor as there were no beds where I needed to be. At this point, I am scared out of my Jesus mind, got 3 other people and families gawking at me, and am having no procedure done. Awesome. I can remember telling mom, Karla, and Lee to go on home and come back in the morning, but they lingered around until visiting hours were over. When they did finally leave, I walked out in the hall with them and hugged them as they left. When I went back into my room and drew the curtain close for "privacy", there, I finally allowed the tears I had held back all day fall. I cried a lot that night, until I would finally fall asleep. This happened throughout the course of the night. Cry, sleep, be woken by a roommate/nurse/hospital bustle, repeat.


The next day I was scheduled to have a biopsy of my mass done. I didn't know what time, just that at some point I would be taken to have it done. I was also told that first night in emerge, that the biopsy would entail me being put to sleep (this put me at ease), a small incision would be made on my side and they would go in through there to collect a sample of the mass. Seemed simple enough but I was still nervous as hell. Their belief was the mass was in or around my lung, so being put to sleep was a bit of a comfort to me.


Mom, Karla, and Lee arrived in the morning. We sat around in the lounge of that floor, waiting to be called. Once again it was a day of waiting. I remember sitting, not really being able to follow the conversations around me as my nerves were getting the better of me. Lee offered me one of his ear buds to his ipod and he played U2- The sweetest thing (it's funny how you can remember such details in these situations and we sat and listened. It was easier than trying to talk. Eventually Lee had a class that I insisted on he go to, and Karla had a dentist appointment. We had no idea when (or if) I would be done that day so I told both to go. Not long after they left, a nurse came and told us someone was coming for me. Finally it was time.

Back in my room I was met by a man with a wheelchair. He informed me that he would be taking me to radiology. There, in my hospital room, at the age of 21 years old, I broke into tears and hugged my mom like a little girl. I could of probably stayed like forever but we were interrupted by one of my nosey roommates asking me where I was going and a "sure that's no big deal" to follow. It was much easier to go in the wheelchair after her helpful two cents.

I was brought down to radiology where a technician informs me of the procedure and explains it all. She tells me I am going to be having a CT guided biopsy and how they'll send me through the machine to get an image and locate my mass, and then they would enter a device that would collect a sample of the mass. All the while, she tapping her own chest when explaining the device going in. That is where I had to stop her. WTF happened to being put to sleep, going through my side, and everything I had been told?! She had no idea why I would of been told that. I would be awake for it and the needle would go through my chest (no worries though, there would be freezing given to the area). So you can imagine at this point my head is spinning. She then moves to getting me to sign a consent form after explaining the risks and all. The only risk I remember hearing is a possible  punctured lung and I can remember how much my hand was shaking when signing.

This is now the point mom is to leave and wait outside. I wish I could say this is where I sucked it up and composed myself.....not so much. I lost it and I was shaking uncontrollably. I also knew mom was standing outside, alone and feeling helpless. I can't imagine that feeling. I was wishing so much that someone was with her. But realistically, if I was wishing for stuff, I probably would of wished to not be having needles go into my chest. So over onto the table of the cat scan machine I went. There, a male technician (who happens to be an uncle of childhood friend) is telling me to pull down my ever flattering johnny coat to expose my chest. In what I'm sure was suppose to be comforting to me, he explained he would cover me up as soon as he could. He probably thought I was embarrassed, but in actual fact I would of made him a deal to parade around the hospital topless in exchange of not having needles go into my chest. But as no such deal was made, they put freezing into my chest. Anyone who has had freezing for any reason knows the sting/burn that comes from it. Well my entire chest felt as though it was on fire. It was not pleasant, but it was necessary. They then sent me through the ct machine to get their first image, but my body was still shaking and the voice telling me to "remain still" wasn't causing it to stop. They gave me a dose of Ativan and finally my body relaxed enough to get a clear image. I think it would of been kind of them to give a few more doses so my mind could relax too, but I guess it doesn't work this way. It was finally time for the part that was causing all my anxiety. I turned my head so I couldn't see, and the male technician must of sense my fear, because he rubbed his hand over my head. I did feel comfort in this...or maybe that was the Ativan. They entered the needle in through my left breast and continued down into my mass. I was ever so thankful for freezing as I remember feeling pressure but I can't remember registering pain. Next, with the needle still in my chest, they sent me through the ct machine again to ensure they were in the right spot. Thankfully they were and they collected their sample and got out. I felt a bit foolish on how upset I had gotten as I didn't feel any pain, but the fear I was experiencing had been real. It's hard to convince your mind sometimes....I guess I should of listened to that nosey roommate.

Once I was clothed again they took me by wheelchair to get an x-ray to ensure my lung hadn't been punctured, or anything else they may have told me that I do not remember them saying. I then went back to my room to rest and let the freezing and Ativan wear off. Upon arriving to my room I was greeted with "nuttin to it, was it?" by the nosey neighbor. I see the comedic side of her part in this now, but I'm pretty sure I would of thrown something at her that day.

The freezing wearing off was probably the most unpleasant feeling of all this. I felt a lot of discomfort and pain. My chest and down my left arm had a lot of pain. I learned after that it's most likely a nerve was hit/damaged during the biopsy, and this is something I still have occur to this  day. I can go months at a time and have no issues, and then other times it can be ongoing for long stretches. The only relief I find now when it acts up is having the weight of my arm lifted, so by putting it in a sling helps. If this is my only physical reminder to all that I went through, I'll gladly take it. That's what I tell myself when I feel like sawing off my arm when it does act up.

When a doctor came to see me later that day, I was told the sample they had was small but they were hoping they could use it for diagnosing me. It would take close on two weeks to get the results, and I were to remain in hospital. I did so for a few days, but as the only benefit this had was keeping a bed reserved, I was released the day before my 22nd birthday. I got to spend that out of hospital, and attend a few classes to clue in my professors as to what was happening. What I had thought was going to be the hard part was over, but in actual fact I learned waiting is way worse.


Thank you so much for continuing to read my story! I'm hoping to continue on a more regular bases. Sometimes it is hard to sit and write such detailed memories. But as long as it eventually gets written down and the possibility of helping others is there, I consider it a success. Please feel free to share! Thanks again

-K