I have never been so sick. The chemotherapy I received last week did a number on my system. I felt extremely nauseous, weak, and dizzy. I could barely manage to swallow my anti-nauseous pills without gaging over a bucket. Something was and is not right. My new clean diet was just getting on track before my treatment. I was feeling so strong and like the person I knew before all of this ever begun. Yet now here I lay, on a couch, for days on end. Trembling over a slice of apple while crying because I just want it all to go away. I am my only advocate. I do not care if this new chemo I am on can sustain my life for 5 years (They haven’t said that by the way). What is 5 years living on a couch? That is not living, that is just surviving. I want to live. I want to be able to do everything I have always wanted to do and more. I want to be able to enjoy the company around me and feel the fresh air as it enters my nose. I want it all. This new drug is limiting me. It is a very hard choice when deciding what you should do when you are dying. I will not be able to please everyone. Heck, I may not please anyone in the process. At then end of the day I am only worried about myself. If I feel good then that is all that matters. It just does not make sense to me to go from feeling 100%, to poisoning myself to the point where I can barely move. I am not saying I am giving up on chemotherapy, but I am definately saying a firm “no” to the last drug that was pumped through my veins.
My chemo in the past I used to look forward to at the beginning. Knowing the cancer is in my body, I wanted to start the poisioning process as soon as possible. This past week was very different however. I have been feeling so good and so strong all summer, that I knew this was not going to be fun. If I do not have many years left I want to be able to live them, not stuck on a couch feeling so sick. I found out on Wednesday that FolFox (unlike Folfiri which I was on before), cannot be taken biweekly for life. The side effects are much more damaging and I have to have breaks built it. The amount of options I have are slightly overwhelming. Here are just a few scenerios:
– Take Folfox for 6 months, and then have a 1-3 month break
– 2 months on, 1 month off
– 3 months on, 3 months off
– Do not take Eloxatin, and just have Fluorouracil
– Take a lesser dose of Eloxatin
As you can see, it is very hard to know what is right and what will work. I will have to trial and error to find a balance between what works against my tumours, but what also does not make me a couch potato.
Now, let’s discuss this fun new drug called Eloxatin. It has the common symptons one would expect with chemo such as mouth sores, nausea, diarrhea, vomiting, change in taste, fatigue, nose bleeding, etc. The fun thing is about chemo, you should fully expect to have all of these side effects. This list usually is not a “you may experience” and more of a “you will experience”. All of those I dealt with last time. The new fun one this drug brings is called Neuropathy. It is nerve changes that can cause tingling or numbness in the hands and feets, muscle weakness, or other altered sensations. This can hinder the patient from being able to even button up clothing, and can become permanent. The most common trigger of neuropathy is exposure to cold. So with the drug they actually provide the patient gloves. Not for the Canadian winters, but just to go in the fridge. Any time I need something from the fridge, I have to put on gloves. The nurses also warned me that I should never eat or drink ANYTHING cold. Having a cold substance can make it feel like my throat is closing in and simulate suffocation. Oh fun. This means everything must be consumed at room temperature. No cold drinks, fruit, veggies, yogurt, etc. How fun is this right? With the winter coming I have to wrap a scarf tightly around my mouth and nose to ensure I do not breathe in any cold air, as it will cause the same effects. On top of all that, it can also cause temporary vision loss.
So my last thought on all of this is – stop complaining about your regular lives.
Sounds like some sort of super hero. Power port to the rescue! – I think I’m still high from the meds.
Last year during my first visit to the hospital I now call my second home – I was given a port-a-cath. This is not some sort of fancy alcohol, but a device that sits under my skin just below my throat. It gives my doctors and nurses direct access to my jugular vein. This comes in handy when you have chemo every two weeks. No digging in your arm looking for a good vein – I just get hooked right up to the cocktail with a quick stab (or two) of a needle in my chest. This port worked wonders for me for a long time, right up until I began putting on weight. The pocket under my chest wall they created was pushed further and further away from the surface, due to the amount of fat I was gaining. This then proved to be troublesome to every nurse who tried to access it. I also had the kid size version of the port, since I used to be a skinny gal. With my more curvy figure, I needed the upgrade to the larger port. When I received the news I would be on chemo from now until the end of my life, my oncologist thought this was the perfect time to upgrade me to the Power Port.
What’s the difference? It has a larger area for the nurse to guide her needle into – so it is harder to miss. It also is able to be used for my CT scans for the contrast solution – which means less arm needles. Getting blood taken is easy – I’m talking about the needle they use with a catheter. They always seem to push and pull it around in my arm, that I usually end up dizzy and on the floor.
Leading up to my day surgery I was calm. I arranged ahead of time with my doctors that I would like to be put to sleep for this procedure. Something that is not common for this surgery – but they remembered me from all my previous visits. No one wants a crier on the table with her arms waving about telling everyone to back off until she “gets the drugs”.
I walked into the operating room, climbed up on the cold metal table, and started slowly panicking. The anesthesiologist was really sweet and told me a joke while he poked around at my hand. Stupid catheters. There I lay, staring up at the bright lights. The nurse came to put my oxygen mask on, and the tears started trickling down my face. This is my life now – I thought. How did I end up here? This surgical team knows me so well now they are joking around about having “whip and nae nae” play as part of the background music before they push the “sleepy” drugs into my system.
I awoke in pain, but nothing that I couldn’t handle. Any surgery now is nothing compared to all my others. What was bothering me more however was my left eye. It felt like an eyelash fell it in. I was half drugged up still when I asked a nurse for a mirror to look at. He quickly let me know they didn’t have one. He probably thought it was just the drugs talking – so I don’t blame him. After about 45 minutes I was sent home – and my eye was still bothering me. No less than an hour later after being home, it got worse. The annoying feeling turned into pain and I could no longer keep my eye open. Off to emerg we went. Three hours later I was finally told that during my unconscious state I scratched my eye. Awesome. He sent me home with some gel and let me know it will take approximately three days to heal. Guess who had a sleepless night? They should give patients mittens until they are conscious enough to not stab their eyes out.
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.
I should be more fucked up. I mean seriously – what kind of a mind fuck is it to be told pretty much you are on deaths door, to all of the sudden having some surgeries, doing some chemo, and then being told – oh wait, never mind, maybe you will have some years ahead. I think I can attribute my sanity to the fact I have always been more focused on other things.
Before my first surgery, my mind was not thinking about my doctor pulling and poking at all of my organs, but was more focused on how many people would prefer a burger over a hot dog at my BBQ. In between my first and second surgery I was not caught up in the horror from the first, but more focused on making sure I was well enough to go to Arcade Fire back to back. During my chemo in the Fall I was not spending day in and day out with thoughts of if it was even working, but more on what course at the University of Toronto I should take in January.
Today my focus is still partly on my health (obviously), but more on my school, my upcoming trip (yep – I am all booked for Punta Cana 3 weeks after my last shot of chemo), and then I am already excited to go back to work (currently aiming for January 2016). All of these things and more, I believe, have contributed to keeping me from becoming a crazy person. I am rarely thinking about the now, but more times than not I am focusing on what is ahead. Do not misinterpret what I am saying here – I LIVE in the now. I do pretty much what I want day in and day out because it makes me happy. I am saying my mind however, is always racing with plans for the next big thing.
I know I have spoken quite a bit about the changes in my body – but I am a girl so obviously this is a major issue for me. When I first learnt I would be on chemo for about a year, I thought like most people do – weight loss central. This however is not the case with all treatments. Yes, there is that stereotypical look of a chemo patient with no hair who looks like skin and bones. Then there are the people whose drugs react in the total opposite way – like myself. My drugs not only cause me to never have a full feeling (that’s right, I can eat for days and never get the sense I have had enough) – but the steroids have also caused some serious ballooning of my body.
The stomach was an obvious stand out at first because, well, it started standing out. Then I noticed my thighs had a few more bumps than normal. The shirts I would try on at the store went from medium to extra large – and even some of those looked too tight. I went from my skinniest after surgery to my heaviest in a matter of months – and there was really not much I could do about it. I knew the steroids were causing my face to swell – but until I did a side-by-side photo – I did not realize how much.
Yes, I understand that gaining weight is much better than losing. I did not expect to be going through this and also look like a supermodel the entire time. As a young female however, our looks are still important to us. Well not even as a young female – I would say as a female in general. Heck, even some men would probably have a tough time with this. The scars I could care less about – but looking in the mirror and seeing back rolls (yep, thats right, I now have back rolls) – was more than shocking to me. If I haven’t said it enough, I am ever so thankful to have such a strong support system. They really come in handy when I am having a “nothing fits me” kind of day. And yes I know at the end of it all, a little weight gain in order to save my life is probably a fair trade off. I think I need to put that into perspective a little more.
I am finally on the other side of my chemo treatments! Seven down only five more to go… for now? Had a good chat with my oncologist and he let me know I will get a break (thankfully) – but for how long is still to be determined. Now on to planning my travel life for this summer! My nurses in oncology as well as everyone else I seem to meet have all told me to get out there and start travelling. It sounds perfect to me. All I want is to get away from it all and have some good laughs and see some amazing sights. So the planning has begun! So far on my “to-do” list for 2015 is Las Vegas, New York, Vancouver, Florida, California, and maybe a beach resort getaway. Time to stop worrying about everything I cannot control and focus on what I can. Making valueable use of every moment of every day is my new “full-time job”.