It’s been keeping me up at night. Two years. That is what my surgeon thought I would live for. Of course I didn’t find this out until a few weeks ago. My two year diagnosis aniversary will be on April 14th. I am hoping to be away, some place warm. Some place with my toes in the sand where I can laugh at how wrong they were. I know why doctors lie and don’t tell you what they are really thinking. If he had told me I only had two years left, I might have said no to chemotherapy. My mind and body might have given up the fight. So obviously I am happy he did not tell me the truth that day. What plays in my mind though is when will he lie to me again? It is bound to happen at some point. He will smile and say something nice but not too nice. He says that all the time, “I will never say things in absolutes Jamie.” I know, but sometimes it would be nice. To say if we operate I do not think we will have anything to worry about for at least a year. Of course my goal is to never have it come back again, but hell I would take a year if it was a guarantee.
I’m not sure if it is so much a plan, but more like a “choose your own adventure”.
Sitting with my surgeon and my oncologist they both let me know I have options, and here are the main two:
– Have surgery in the Spring/Summer
– Have surgery in late Fall
Without typing for days and boring you with all of the little details, the way I read those options are:
– Less chemo
As you may know by now, man do I hate chemo – so you can guess which option I am going for.
So what will this entail? Well I will have my lovely mid section sliced open again to access my liver. Totally cool. Oh and I will have both lungs operated on. Double chest tube! I am PRAYING that they say I only have to do two more rounds of chemo and then I will get my pre-operation break for all of March and April. However it is more likely that they will push me to do chemo right up until 6 weeks before my surgery.
Yesterday was my first scan after my horrible one in September. Since then (as I hope you have read), I have changed many different things in regards to my treatment and lifestyle. Yesterday was the day to see if all that has paid off.
40 minutes before my appointment with my surgeon my mother and I were relaxing in the hospital Second Cup when I felt a pat on the head. Dr. Jay in his scrubs and what seemed to be fresh out of surgery. So now in rough quotes is what we discussed:
“Oh hello! I can just quickly update you now but then I would like to see you next week once the radiologist gives me his report on your scans. They were good, really good actually. From what I can tell they all have shrunk and some have disappeared even. I think there are 4 left on your lung and 2 on your liver? All of them seem to be superficial as well. I want to wait for the report and speak to Dr.Ko, but we might be able to get rid of them for you.”
This moment was mixed – happiness obviously that everything is working, but confusion and another feeling I have yet to name.
“Surgery? So you can remove them laparoscopicly?”
“Ha ha no. I have hacked at your liver so many times I would need a full visual.”
“So you want to cut. Cut me down my front. Again. For the third time….. I don’t know about this. I was so weak and my body will have to recover and that could make everything worse.”
“I know it is a lot to think about. I didn’t think we would be here again either to tell you the truth. Hell when I first met you I saw your scan I can honestly say I never thought you would be in my office again. But you suprised me then and again you are suprising me today. Let’s be honest. You have stage 4 cancer. I can cut it out and the chance of reoccurance is still high. What this could do though is buy you some time off of chemo, so you can have a some what regular life.”
“If you want me to consider this then next week you better have an amazing game plan. Something like you are going to cut this shit out and then pay for me to go to Jamaica.”
He laughed. “I’ll come up to visit you during chemo next week and we will chat.”
So I am sure most of you are thinking – “YAY! Cut that shit out!” And now I will explain to you in short form (as my mind is running a mile a minute) the dilemma in my head.
Scenario 1: We operate. – I would not only have to heal my front AGAIN I would also have incisions from my lung which would mean a chest tube AGAIN. So how am I sleeping? Not on my stomach, my sides or my back. Even after all that with the shitty recovery, and the drugs I hate being on, and then months of pain, and I have a puppy who will jump and not understand, and the chance of infection, and hospital complications… I will be so weak that it could grow again. So the surgery was for nothing and I’m back on chemo.
Scenario 2: We stay on course. – If some have already disappeared and others have shrunk then let’s just keep me on the low dose of chemo and keep my healthy lifestyle up. It’s obviously working for me and I feel great. But then we know I still have the cancer in me because we can see it. And there may come a point where they stop shrinking, and the amount of chemo in my system will make having a surgery too risky. So now they could grow and get worse.
Scenario 3: We wait for one more scan. – Have a couple more doses of chemo and check back in to see what the boys are doing. Maybe they are all gone now? Or maybe something fucked up happened and they grew weird and now surgery is back off the table and I’m fucked all over again.
Scenario 4: I somehow convince Dr. Jay who is a world class surgeon, who people fly in to have him use his God like hands to operate – that he is wrong. He can operate laparoscopicly and he just has to figure it out. Go back to the skills lab like I see in Greys Anatomy and make a replica of my liver and figure it the fuck out. This is a pipe dream I know, but you bet your ass I will say this to him on Wednesday.
So as you can see this is just a small picture as to the confusion in my head, and now I have to chose one that is right for me. They can all lead to health and they can all lead to shit. This is my dilemma.
I know what you are thinking, I am curing myself by kissing every person I meet? Heard that joke before – nice try.
Although most people know mistletoe just as the red-berried plant that is hung up in doorways around the holidays – it is now also being used to help improve the quality of life for cancer patients. The American mistletoe has the red berries, and that is considered poisonous even after it has been processed. European mistletoe however, once processed can be used as an injectable and infusable medicine. It has been scientifically proven to help with different cancers in a lot of ways – but I am using it for one main reason – to help keep my white blood cells alive and strong.
The positive to chemotherapy is that it kills cancer cells, the negative side is that it also kills healthy cells. The drug cannot distinguish between what is good or what is bad – so it just kills everything it touches. That is why blood counts are always taken before each and every chemo treatment. If you do not have enough healthy cells in your body, you will be unable to receive your treatment that day. Many patients end up (as I did before) on two types of injectable drugs to help with this. They are either Neupogen or Neulasta, and both work in the same way. They go into your bones and take out the new baby white blood cells in order to fill your body with a higher healthy count. It does work and it’s main side effect are bone aches (which sounds weird but it is actually super uncomfortable). So how does mistletoe work differently? It goes up to the already thriving and strong white blood cells and protects them from being killed off by the chemotherapy. Why would that make a difference you ask? Well wouldn’t you rather have a strong, tough warrior fighting your battles than a new born baby?
So what have I noticed with my own self that has proved to me that mistletoe is the shit? Well for starters, I still have hair. I am heading into my 5th round of chemo and I know from experience that my hair should already be too thin to keep. By the time I get to treatment number 3 or 4 I notice my hairline and part are extremely thin and I can’t cover it up anymore no matter which way I try to comb it. (If you would like proof of this look up earlier posts which I believe were entitled “Hair Be Gone.”) Today, my hair is much thinner than it usually is, and I notice more of it in my hands when I am washing my hair – but to the public you would still never know. My hairline is still strong. Will it stay this way forever? Who knows. All I know is that right now there is enough up there that I do not have to shave it.
Still skeptic that this mistletoe is just another fad in the cancer world? Well check out my blood counts from my past three chemotherapy sessions:
I do not expect you to be able to understand what these numbers mean, so I will explain it to you in an easy way. The Neutrophils number is what they look at in order to determine whether you need to start one of the earlier injectable drugs I was speaking about. If that number is closer to or less than 1, you have to start. By treatment number 3 I always have to start on these injectables. Now this number is going down, but I am still in a very healthy range. As my nurses put it, “These are the counts we would expect to see on a completely healthy person!” The labs don’t lie.
The only downside to the mistletoe is not only is it expensive, but I also have to inject it myself every 2-3 days in my stomach. This so far has not gotten any easier and I still get sweaty palms and have to talk myself up to doing it every time. I usually will sit in bed and say out loud, “Would you rather have 2 minutes of discomfort or 5 days? Would you rather have 2 minutes of discomfort or no hair? Suck it up you baby.”
The cost and the anxiety are worth it. If you are interested in this treatment for yourself talk to your naturopath or find one who has this in their roster.
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.
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.”
After I felt fully recovered from my lung surgery in May, I began acting like I was on the “had” side of this cancer world. Although I didn’t look like my old self, I was finally starting to feel like it. I have been enjoying my new hair styles, and was planning to keep it this short for quite some time. I began planning trips for Spring/Summer of 2016. I was purchasing new blazers, shirts and dress pants for work – telling everyone who asked that I was going back in November. When speaking with newly diagnosed people – I discovered I was the person on the other side of the table now. Helping them through the tough parts when you are first diagnosed, talking about their fears, being their inspiration because look at me and what I have endured – and I’m ok now.
Man, did I ever speak too soon.
Wednesday I was certain my scan would be clear. Maybe the doubt was a tiny 0.1% for the other way, but that is just because nothing is ever 100%. My surgeon called me in, shut the door, and wasn’t messing around.
“Jamie, it’s back and it’s bad. You have multiple tumours showing in your lung and liver. I’m sorry to come out and say this to you so fast, but I wanted to get right to it. When I saw your scans last week I wanted to phone you, but I thought that a missed call would have you worry too much. The ones in your liver are too close to the center, that I will not be able to operate. You are now what we call, a person living with disease. Chemo will start as soon as possible and you will be on it indefinitely. I’m so sorry, but I told you from the beginning your case was severe. I thought this day would come some day, but truthfully I did not think it would be this soon. Our hope is that the chemo will at least keep things at bay, and not have any more growth for now. I have had patients live up to 7 years with disease still in them. I honestly do not have a patient of your age with your severe condition, so I am not sure what to expect.”
Best word used to describe the way I feel – heartbroken.