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.
While shopping at a health food store the other day, I hit the cash to find out my total was $450. Crazy. The natural supplements are things I believe will help to prolong my life, so to me they are a necessity. I noticed on their door when I walked in, a sign that read they provide 10% off for seniors. When two of the workers began to ask me questions about one of my purchases, here is how the conversation went.
“You are looking for Lactoferrin Ultra? We can order it in for you, but just to warn you it costs $360.”
“Yes I know, but the injections I take bi-weekly to help with my blood cell count cost $150 – so I am hoping this will prevent those.”
“For inbetween my chemo.”
“Actually speaking of, I noticed you provide 10% off to seniors. Would you be able to honour the same discount for a person on disability?”
“The discount is for seniors.”
“Yes I gather. I am asking if you would honour the same because I am on disability.”
“Oh, no sorry.”
“Ok, well I will just not purchase anything today and come in with my mom on the weekend in order to get the discount.”
I am not mad at the store. It is not their fault that many people in this society have decided to abuse being on disability. They are living their lives healthy but still claiming to have a problem so they can get paid out. Or maybe this store has encountered way too many people asking for a discount before and has just decided to be strict about it. That is their call because it is their store. Here is my beef with the entire thing. I am not trying to purchase the kale chips because it is a fad, and looking to save 50 cents. I am trying to purchase a large amount of supplements, that I will have to restock every other month – and would like to save $45 if I can. So whether they give me it today, or inconvience myself and my mother over the weekend – at the end of the day I am still getting 10% off.
Here’s the other catch – Since my time is short, I will never have the opportunity to receive the senior’s discount. Where are my perks for being on disability? I do not need discounted theatre tickets, or a cheaper coffee at McDonalds. I just want the over priced natural products that I am hoping will prolong my life to be a measly 10% off. Why is that too much to ask?
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.
Just like everyone else living in a first world country – I have accumulated a lot of stuff over my short 29 years. So now the issue is – when do I start to get rid of it? I have slowly been going through my old but good clothes that will never fit again – selling them piece by piece. I can’t say this is a cleansing experience because I am not selling to just clean out my closet. I am selling a lot of my clothes because they will either never fit again, or I will never have another use for them (dress pants for work, etc). I am starting to think about what will happen to everything once I am gone. I hate the thought of all my expensive clothes, shoes, purses, linens, antiques and others being packed up and just sent off to Value Village. Even though I shop there a lot, and do donate often, I somehow feel like my things deserve better. But why? It is just stuff. I have no control over what happens when I die, so really what should I care? For now I will continue to sell little by little in order to help fund my vacations. Long term disability is great, but it is not a lot. I would love the idea of when I pass for people in my life to take a lot of my items, but I assume they may find that strange. “Hey, where did you get that jacket?” – “Oh, my dead friend gave it to me.”