I’m just so annoyed

It’s happening again. I’m not a full on cancer snob, but I seem to be eye rolling quite a bit. If I hear or read another “courageous” story about so-and-so who had cancer once, twice, three times it came back – I might throw up. I know, it’s horrible to say that but I can’t help it. Oh she had cancer and then they cut it out, and some chemo occurred, then it came back and she had to do it all over again – what a miracle woman!

Just shoot me.

It is unfair to play the “who’s life is worse” game, because everyone has their own experiences. So I silently eye roll and feel this tightness in my chest from frustration. I just want to yell out, “Oh you think that is hard? PLEASE SPARE ME.”

I know, it’s not very nice. So sorry if you fall into this category. It sucks. Having cancer sucks. I get it, TRUST ME. I’m like this with everyone though, I don’t just single out my other cancer peeps. Broken limbs, child birth, minor surgeries, you name it I eye roll them. Sorry. I can’t help it that I feel like I just can’t even come CLOSE to relating.

But like honestly what the actual fuck is my life? How the hell have I gone through all this shit in just 4.5 years… and it’s still not over. Just when I think it’s over, and the hope starts to crawl back in, I get a massive slap in the face. So annoying.

What’s funny is when I meet a new healthcare professional who doesn’t know my history and I have to list it. Watching their face while I list out the dates of my surgeries, how much chemo I’ve had, what my status is now – their jaw drops. The surgeries I have had alone in just 4.5 years are RIDICULOUS. I remember going with Chris to see a taping of Cityline a few years back. They had a guest on who had/has cancer (I can’t remember), and she had 7 or 8 surgeries over a number of years. I remember thinking “Woah, that’s crazy.” I am almost positive that I have either surpassed her or have done it in a much shorter time span. My 7 surgeries don’t even include the multiple day surgeries I have had. Stop cutting me open people! I’d like to not have a panic attack on a cold metal table just for one year. Is that really too much to ask? Now in two weeks I’m getting a port-a-cath put back in which is FABULOUS because now I’m GUARANTEED at least one panic attack a month when they have to flush it. Obviously there will be WAY more every time I step foot into that dreaded chemo room and they start poking me with more needles.

Uggghhhhhhhhhhhhhhh. Can’t someone just give me lots of money so I can go on a trip and forget about life. Maybe just never come back? How long can I survive with this shitty ass liver if I park it on a beach?

If you could have 2 amazing years on a beach or 5 shit ass years on chemo – what would you choose?

SEE WHY THIS SHIT IS SO HARD. Longer life is better but quality of life is also better? Is that even a sentence that makes sense? If you can’t have both, how the fuck do you choose?

Finding The Word

Crying has become a part of my everyday life. It is just something that happens and I am almost getting used to it. During my most recent therapy session, my therapist wanted to know why. She wanted me to seek the reason as to why I cry. It started with me describing the memories that like to pop up in my mind daily. All of the ones of me in the hospital, getting poked and pulled and crying out for help. So then the question was, why are these memories the most prominent? What was the common thread that linked these together? I couldn’t figure it out, so we moved on. She then asked, if you could use one word to describe why you cry, what would that be? I had no idea which made the tears come even harder.

Vulnerable. I cry because I feel so vulnerable now.

No, that’s not it.

Independence. I cry for my loss of independence.

No, that doesn’t work either.

Misunderstood. I cry because no one really understands me.

Nope.

Grief. I cry as I am grieving the life I once had.

Dammit that’s not it either.

Then I thought about the hospital, and the memories that haunted me the most. The ones that like to creep into my thoughts and distract me from all of the positive. What was the common link?

No one was there.

When I was having anxiety attacks on operating room tables. I was crying and begging them to stop because I was scared. They would hold me down as I struggled and I would look up the bright light and wish it would all be over.

When my blood pressure spiked and my heart felt like it was coming out of my chest. I kept fading in and out of consciousness and thought I was dying.

When I was told they had to pull my liver drain out at my bedside and they would not wait for my family to come to hold my hand.

When I was struggling to stand and I had to call the nurse to wipe me after the washroom.

When they stabbed my arms and held me down trying to insert a picc line.

Nurses and doctors were there, sure. For the most part they were so friendly and helpful, but they are not family. I also fully understand it is impossible for family to be in the hospital 24/7, so I don’t blame anybody.

So now that we have figured out the common link, is that the reason I cry so often? What is the word that I feel would best describe my feelings in general?

Alone. That’s the word.

No matter how much I explain, no matter who was there for what, no one has been there for it all. No one is in my head having to live with these thoughts, and the ones described above are just a handful of them.

Alone does not only describe those moments, but so many others. I have met a lot of wonderful people who can better understand my experiences, but no one fully can. No one I have met has had 6 surgeries. No one I have met has been told twice that they are inoperable.

So now that I have named it, I have to work on accepting it. There will never be anyone who will fully understand other than myself. So that is the next step. I am working on it, alone.

Foot In Mouth

Something new happened to me in one of my groups the other day. I was new to this group at the cancer centre I go to, so I had to introduce myself, and then in turn they all did the same. I am so used to telling people that I haven’t met my story, that I can sum it up in under two minutes. I remember before it would take me so long to tell it, going through every detail. Then I realized that all the details were not needed and I could just skip to the main event. 

I have stage 4 colon cancer, I have had 3 surgeries and 12 rounds of chemo, I am now waiting on a scan coming up to tell me if I am cancer free or not. Actually, that is probably under two minutes. 

The social worker leading the group asked me to explain a little more about my surgeries and chemo. I let everyone know that the first two surgeries were extremely hard, and I am still recovering from them. My abdonimal section will probably never work the same again. I am in discomfort daily. I then explained how I had 4 rounds of chemo, then surgery, then another 9 and had to stop. The chemo was horrible and was hurting me more than it was helping so I chose to stop. 

After my complaining was over, the man next to me introduced himself. He was 33, stage 4 colon cancer as well. Then he went on to say he was diagnosed a year ago, still had not had a single surgery, and as had 26 chemo treatments so far. 

“Shit.” I said out loud. “I should not have been complaining.” He won the poker hand.

You may be wondering how he can have 26 rounds and still be out and about. Well when they give you chemotheraphy in order to help your cancer stay at bay, and know you will be on it for a long time, your dose is not as strong. It is still horrible, don’t get me wrong, but it is not the heavy dose that would happen if they knew the number of rounds you would be having. 

When I asked him who is surgeon was he let me know he didn’t really have one. He met a man when he was first diagnosed who told him he was inoperable, and that was it. He took that response and just moved on. He never got a second opinion……

I quickly grabbed a piece of paper and scribbled down the name and number of my surgeon.

“I’m not saying he will be able to do anything, but he worked miracles on me. The worst he can say is no, and then you are no better off than you are now.”

Last I saw him he had just had a CT scan, and him and his oncologist were speaking about sending it to my surgeon. 

Lung Tumour

It is hard sometimes to sleep when your brain will not shut off. Since I am such a planner with life, it has been hard to sit back and let things just play out. Two days after my last operation I had a chest CT to check on the progress of my liver regeneration. During this CT they discovered a small tumour on the upper side of my left lung. My doctors then went back in my scans and discovered there was a small glimpse of it on my original scans from April. At first I was annoyed of course. How was this missed? Then I came to terms with the fact that they were so overwhelmed by what my liver was showing, they were not looking any place else. They did however give me another CT in May for the sole purpose to check if I had cancer any where else. I already had two treatments of chemo under my belt at this point, and my surgeon let me know I was clear. Conclusion? My lung tumour shrunk enough after two treatments that it disappeared from the scan. Sounds amazing right? Well to me, not so much. From when they decided I was going to have my first surgery, to when I was able to go back on chemo after my second surgery, three months had passed. Three whole months without chemo. That little tumour was persistent and came right on back after the poison was out of my system. This is what worried me. What happens if after six scans the tumour is shrunk enough that they do not feel the need to operate? At this point I feel like I am a pro when it comes to surgery. I would rather have them get in there and remove the sucker with good margins, then leave it and hope that it just never comes back. With my mind racing around this topic I knew I needed to have a phone call with my surgeon. I explained my thoughts towards everything and here is what he had to say:

“I know this must be tough for you. You have been through so much and I understand why you would want the piece of mind. However, the tumour on your lung is very small and does not worry me. What does worry me is all the other cancer cells I think are in your body. Those microscope cells are what we need to focus on. If we have surgery now, you will be off chemo for 6 weeks, then we would operate, then you have to recover for another 6 weeks. That is too long to be off treatment again. I have asked you to trust me many times, and so far your trust in me has paid off. So I ask for you to continue with that trust. In January we will have another scan and reassess your lung tumour. Until then stay strong and fight through the chemo. With your liver being much weaker than before, I am not surprised this is taking a bigger tole on you. Do not worry and keep going.”

That is obviously not word for word, but pretty much bang on to what he had to say. A quick 5 minute phone call instantly calmed me down. Yes, the cancer that we cannot see in my body scares me. Yes, every chemo treatment so far has sucked, and I am sure will continue to suck. But the fight must continue. I have to trust in my doctors that they know what is best for me. I’ve gone from inoperable to operable in less than 6 months, so I am becoming more and more positive that I can truly beat this.

Operable

The one question I forgot to ask my doctor last week, “How do I go from inoperable in April to operable in June?”. I mean, it is exciting to say the least, but still that question looms in my mind. I just do not understand what is so different? They did say that my chemo was working and the tumours were shrinking, but I cannot imagine it was by a large significant amount. I have only had 4 treatments. I am going to ask him that question on the 16th, however I have a feeling I know his answer because the surgery I am having is very risky. On that note, let’s break it down:

Surgery 1
The doctor will first go in and remove 9 tumours on the 20% of my liver he would like to keep (You only need 20% of your liver in order for it to function. Also, a healthy liver will regenerate itself.). He will then block the portal vein that is suppling blood to the other 80%. This will cause that side of my liver to shrink. During the same surgery he will also remove the 4 tumours from my colon. He has also half promised he can do this without leaving me with a colostomy bag *fingers crossed*. It would not be the worst thing, but if I can avoid it that would be nice.

Surgery 2
The doctor will go in an remove the 80% of my liver that he has shrunk. Although this procedure seems smaller, it is actually the most complicated and the most risky.

Excitement and nervousness are the two emotions that I drift back and forth with. By the time I have my first surgery on the 21st of July, it will be almost 6 weeks since my last chemotherapy treatment. The paranoid part of me is worried that my tumours will have grown or multiplied during this time. There is no set plan yet for what happens in between the two surgeries. I will either jump from one to the next, or have a blast of chemo in between. Stay tuned for updates.

The Challenge

Two days after my diagnosis, I was sent to St. Joseph hospital to meet with my surgeon who would now be looking after my case. My doctor walked in the room and sat down with a picture of a liver. He began to explain the different quadrants of the liver, and how he needs 20% healthy liver tissue in order to operate. As he placed the cartoon depiction of the liver on the table he pulled out his pen, and the circling began.

“You have multiple mets on each section of your liver. At this time we are not able to operate. I will be honest with you, it is very rare in cases like yours I am ever able to operate.”

My mom, my dad and myself all cracked. He let me know he wanted to start me on chemotherapy right away. He set me up with an appointment to meet my Oncologist, as well as my day surgery for my Port-A-Cath. This was all going to happen in the afternoon. I started having a meltdown and asked everyone to leave the room

“So, now I am really going to die.” – This was the first thought that had entered my brain. In that moment I reverted right back to a child like state. I got up from my chair, climbed up on the doctor office bed, and laid down in the fetal position crying. My doctor returned to check in on me and we began having what I like to call “real talk”. It was during that conversation something came over me. This feeling of determination, of not wanting to be a pussy about it. “Suck it up, stop crying, get on with it.”, I told myself.

I sat up, wiped my tears, looked him square in the eye, and gave him my challenge – “I challenge you to a surgery. You will be seeing what my liver looks like within the year. Year and a half tops.”

“Ok Jamie. Challenge accepted.”