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