The New Plan

If you are reading this and wondering how my surgery went, I apologize. I was called by my surgeon 3 weeks ago and told that he had to bump me. There was a patient he had who has a more complicated problem and needed my time slot. So my new surgery date is July 5th. I have been asked a lot, “How do you feel about that?”. Truthfully – I feel fine. I’m confident my surgeon wouldn’t have chosen me to move if he did not think that I would be ok.

The other interesting piece of information I found out recently is that I will no longer have to go back on chemo. During my post operation appointment, Dr. Jay let me know that after my last lung surgery I would be put back on chemo, particularly Oxaliplatin (or Eloxatin). This is the drug that is used in the FolFox treatment. I spoke up faster than he could finish his sentence and let out a big “Hell no”.

If you want to know why I was so fast to react – please refer to my posts in October 2015.

Dr. Jay was quick to respond and let me know that this was the only drug which is proven to work with cancer that has not yet formed a tumour. But my answer was still no. I am one of the rare people whose bodies cannot handle this drug. I told Dr. Jay that my oncologist would back me up but he wasn’t hearing it. I get it – I am known to complain about being on chemo because I hate it. So I assume he just thought this was me being dramatic. Jokes on him.

A few weeks ago I met up again with Dr. Jay and he let me know I was right and he should just listen to me moving forward.

Just kidding.

What he did say however is that he had a meeting with my oncologist and THEY decided that I cannot be on FolFox. It does not react well with my body and it would do more harm than good.

Oh reaaalllyyyyy???

So – no more chemo for me this summer. This news is amazing because I really didn’t want to be sick and bald for my wedding in September. I am slightly worried however. I have been off chemo for this long before and just exploded all over again with tumours. So I am being cautiously optimistic. Not one of my doctors is saying, “After this next surgery you will be cancer free and we will never see you again.” Actually what they have said is, “This most likely won’t be the last operation you have – just so you know.”

Cool.

 

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FolFox

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.