Ugh

Well it’s been almost three weeks since I found out that chemotherapy will be coming back into my life, and almost four since I found out cancer was even back. I thought it was going to be a whirlwind again of port surgery, and then chemo straight after, but surprisingly it hasn’t worked out that way. I am having my port surgery tomorrow, which I then assume I will be starting chemotherapy the following week. I have had some time to digest the news, and I am starting to not cry multiple times a day. So I’ll take that as a win!

In the mean time, I’ve cleaned up my diet again and started back on mistletoe injections. If you do not know what I am talking about, search “mistletoe” in the bar on the right and read all about it. Cleaning up my diet has consisted of cutting out alcohol, and trying to stay away from foods with processed sugars. I allowed chicken back into my diet a few months ago, so now I am only eating it once a week if I can help it. Raw juice is also back (though it never technically left), but now I am making sure to drink it at least 5 times a week.

What type of chemotherapy will I be on this time? Well that question I still do not have an answer for. I left a message for my oncologist letting him know that I would like a meeting with him first before I start. I have 5000 questions running through my mind and I require answers before they can start injecting me with poison again. A few of them are as follows:

  • Are we looking to kill the cancer or just sustain my life?
  • Can I start on a lower dose?
  • Is FolFiri the best option or is there any others?
  • Are there drugs that cost money that I can be offered?
  • Will I be here every two weeks?
  • How often will I be scanned?
  • In the future can I come every three weeks, or maybe have every third month off?
  • What can we do to lower my anxiety attacks in here?
  • I don’t want to compromise my liver function, so what marker will you be looking at?
  • How much growth of the tumours can my liver take?

I feel it is extremely important to create my own treatment schedule. I know my body, I know what it can take and I know what my limits are. If we are planning on sustaining my life, then I don’t want to have the rest of that involve a bucket for five days every two weeks. My strongest defense against this disease is the fact that I have always been my own advocate. I consistently ask questions and stand up for myself. I do not let any doctor tell me what to do. They have a strong say, but I view it more as a consultation rather than an order. Every conversation with every doctor has been just that – a conversation. Never be afraid to do this for yourself. If you think they will be annoyed by you – then first off, get a new fucking doctor. Every single one has told me that I need to keep being an advocate for myself because I obviously know what I am doing. Look how far it has taken me! My main surgeon thought I would be dead years ago. Maybe I would have been if I didn’t listen to my body and take my life into my own hands. I’ve taken risks and for the most part they have paid off.

My next advocate moment is a second opinion. I trust my surgeon with my life, but if he says that surgery would be too difficult, then let’s find someone who may think differently. Thankfully again, he is on board. I called his office today and gave him a name of a doctor, so I’m just waiting to hear back. His receptionist let me know that he knows him well and will probably call him on his cell – which is perfect.

Side note – If you are wondering where the tricky tumour is – liver or lymph node – well I still do not have an answer. 

So now I am just looking forward to a big anxiety attack tomorrow followed by a lot of crying, which I am sure will last the rest of the week. Having the port-a-cath put back in will be a big reminder that this ride for me is still not over.

By the way – I know everyone means well, but if you have my cell phone number please do not send me a “thinking of you” message tomorrow. I can’t explain why that bothers me so much but it does. I guess when you have been getting them consistently for 4.5 years they start to lose meaning. Like I’ve mentioned before, I’ll reach out when I want to reach out. No one is above this. So if you think “Oh she doesn’t mean me though” – you’re wrong. Sorry if you do not understand – and be thankful if you don’t. That means you have not had a consistently shitty life for an extended period of time.

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Operable

The one question I forgot to ask my doctor last week, “How do I go from inoperable in April to operable in June?”. I mean, it is exciting to say the least, but still that question looms in my mind. I just do not understand what is so different? They did say that my chemo was working and the tumours were shrinking, but I cannot imagine it was by a large significant amount. I have only had 4 treatments. I am going to ask him that question on the 16th, however I have a feeling I know his answer because the surgery I am having is very risky. On that note, let’s break it down:

Surgery 1
The doctor will first go in and remove 9 tumours on the 20% of my liver he would like to keep (You only need 20% of your liver in order for it to function. Also, a healthy liver will regenerate itself.). He will then block the portal vein that is suppling blood to the other 80%. This will cause that side of my liver to shrink. During the same surgery he will also remove the 4 tumours from my colon. He has also half promised he can do this without leaving me with a colostomy bag *fingers crossed*. It would not be the worst thing, but if I can avoid it that would be nice.

Surgery 2
The doctor will go in an remove the 80% of my liver that he has shrunk. Although this procedure seems smaller, it is actually the most complicated and the most risky.

Excitement and nervousness are the two emotions that I drift back and forth with. By the time I have my first surgery on the 21st of July, it will be almost 6 weeks since my last chemotherapy treatment. The paranoid part of me is worried that my tumours will have grown or multiplied during this time. There is no set plan yet for what happens in between the two surgeries. I will either jump from one to the next, or have a blast of chemo in between. Stay tuned for updates.