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.
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.
At what point in my journey can I use the phrase “I had cancer”? Is there any specific time that you can switch a “have” to a “had” when you have stage 4? Since the cancer cells in my body are just floating around like dust particles, I wonder if I will ever be able to speak of cancer in a past tense. If I forget about the microscopic cancer cells and just go by what we can see, can I use the term after my first clear scan? Or do I have to wait till that all coveted 5 year mark to finally say, “I had cancer”. Even when that time comes, is that a description I would want to define myself? I am so much more than this disease, but yet it seems to be in the top five of words used to describe myself these days.
Having a “planner” personality it is very difficult to throw all of my papers up in the air and just let life unfold as it may. I am always looking years ahead but now I find myself only being able to plan 3 months at a time. Right now I am not even sure what will happen next month as my next body scan is January 27th. That will determine a yay or nay to surgery on my lung. However if that scan is clear then in February, am I stepping into the “had” zone? Maybe it is when I am off chemo and all I have is scars as evidence of my battle with cancer. Maybe I should stop thinking so much.
Well I can finally say I understand what chemo is really like. It started at around 12:00pm yesterday when I began to feel the full discomfort from the drugs. I was hot and cold at the same time and extremely nauseous. Thankfully I had a good friend by my side who consoled me while I shed a few tears (or a lot, but who’s counting). Coming home it only got worse. The nausea persisted and even made me physically ill throughout the night. If this adventure couldn’t get any more fun, I received a call today from my nurse that my oncologist is putting me back on the daily injections for white blood cells. Oh, and they are refusing to provide me with and at home nurse even though I explained in detail how bad my anxiety was last time.
This next step in my journey I can already tell will not be fun. Who would have thought after two invasive surgeries that it could get any harder. I know the overall thought is – it has to get a little harder in order to be better on the other side. But that is easier said when you are healthy and don’t feel like shit. So those happy people who I know are saying it to be nice – can screw off for now. Sorry.
Dealing with my pain daily has become normal for me. Who ever thought I would say that? I feel like I have not been myself since July 20th, the day before my first surgery. All of the shit I went through during my hospital stays and all the days in-between really changed me. Obviously I will never be the exact same person I was back in early April 2014, but I would like to at least get back to the person on July 20th. Before I knew how scary life really can be. Before I knew what death looked like. Before I became used to being stabbed with a needle multiple times a day. Before I became comfortable just lifting up my gown to whoever came in that resembled a health practitioner. Before I knew what withdrawal feels like coming off of a pain medication. Before I knew how many days my body could go without eating.
My surgeon is amazed by how “well” I am doing. He says my fallen appetite is normal and most patients of liver surgery lose up to 25% of their body weight – so my 10-15 pounds is nothing. My first surgery was invasive, but he let me know my second was 500x more invasive, and I should lower my expectations on recovery. That is easier said than done. The way I feel in my head does not match the way my body is responding. “How bad do I really have to pee?” – I question this about every hour. That involves sitting up, walking to the washroom, and trying my best to sit on something not even close to comfortable. You try sitting on a toilet without using your abs. Near impossible.
Chemo is starting again in 2 weeks. A new friend appeared on my upper left lung that I now have to tackle. My body is not as strong as it was the first time I was on chemo, but my blood work looks good so back into the stadium I go. Bottoms up to the chemo cocktail.
My two biggest fears are needles and spiders. Leading up to my diagnosis I was stabbed so many times, my arms were bruised like a heroin addict. I used to squirm and cry each time, but I never thought I would become this comfortable. Needles used during my chemo have stopped making me feel faint and crying over (only the first time). I still cannot look when they take my blood or put the needle in my port, but at least there are no tears.
My last visit to the hospital they warned me that my white blood cell count was dropping too fast. To sum it up really quick, chemotherapy kills good and bad cells… my good cells were not reproducing fast enough. I had to be placed on daily injections for 8 days in order to help with this. I did not think anything of it at first, I have become a needle pro. Then they told me the real kicker to this whole thing, I have to administer the needle myself. I instantly said no, not possible. After much persuasion from the nurse, she assured me that it was very easy and 99% of her patients do it themselves. I was booked to come in the following week to the hospital for my first one.
Of course I was nervous, but I was trying to talk myself down from it.
“Diabetic people have to do this everyday… I can do this… ”
As if this adventure could not get any more fun, I had to draw the drugs from the vial myself. They taught me, let me practise and then said “go”. I took the needle off… drew from the vial… tapped out the bubbles… cleaned off the injection site on my stomach… and then sat there. Needle in hand I began to cry. How was I ever going to actually proceed with the motion needed in order to stab my own stomach with this needle? My mind was racing. My mom and friend were there for support, cheering me on. Finally… eyes closed.. one, two, three… I stabbed my stomach. Not the worst. Now I had the task of switching my hands and actually slowly pushing the drug in my stomach. Nope. Anxiety attack full swing… pass out mode engaged… the nurse had to take over.
Day two I had a nurse come to my house to be here in case I needed help. I was nervous but I tried to pump myself up. My pump up worked and I was able to do it from start to finish with no tears. Success!!!
Day three I began to draw from the vial and I noticed my needle was leaking. I started freaking out but the nurse again was here, and stepped in to help. I lost some of the medication so we opened a new vial, and drew the rest from that. My heart rate was up slightly from the set back, I took a deep breath. One, two, three… jab… except the needle just pushed my skin in and did not pierce. Annnnddd the anxiety came right on back. Heart rate up, tears flowing, the nurse took over.
Day four…. starts in 2 minutes. Wish me luck 🙂
By the way, needles is one thing. If you are afraid of them like I was, I am proof you can get over it… kind of. Spiders on the other hand…. If they told me I had to hold a tarantula everyday in order to feel better….. that’s a big cup of “nope”.