CEA Blood Test

With my next scan only four weeks away, my anxiety is growing with each passing day. Thankfully, I can’t remember the last time I cried all day, so that’s a positive. I am trying to stay in the mind set that there is nothing I can really do to have the results I wish. The holidays were hard on my body. More alcohol than I have drank in the past three years combined, and enough sweets and salts to go along with it. But that was to be expected and I do not feel like I over indulged. I have to constantly remind myself that I have to quit the “blame game”. If my scan results are bad, that is not because I had a larger piece of pie for Christmas, or because I had two glasses of wine with dinner – there was nothing I could do to prevent it. I am starting to truly believe that. I am cleaning up my eating again because I was to stay consistently healthy for a longer period of time than just three month periods.

I’ve decided after this next scan to change up my follow up schedule. When most cancer patients enter the NED (no existing disease) stage, they all have roughly the same schedule. Two to three years having a CT scan and blood test every three months, the following two years it drops to every six, and at that beautiful five year mark it goes to once a year. This is because with each passing year, your chances of reoccurence technically lowers. Of course, every body is different, but overall this seems to be the case. I however would like to do things differently, as I always seem to do. With colon cancer a good indicator that something is changing is when your CEA (carcinoembryonic antigen) levels in your blood are increasing. This isn’t a perfect way to tell if your cancer is back, but it is usually pretty accurate.

Just in case you have no idea what I am talking about – the CEA test measures the amount of a certain protein that may appear in the blood of some people who have certain kinds of cancers, especially cancer of the large intestine (colon and rectal cancer). A healthy person should have CEA level under 4. A smoker is typically under 6. In the late summer of 2015, after my lung surgery, my CEA level was 4. Fast forward to Spring of 2016, when my cancer was back in my liver and lungs, my CEA level was 44.

At my last check up in October my CEA level was 0.3. Yep – that was a shocker. So this month if my levels have increased a significant amount, then something very well could be going on inside. However if they remain very low, I will feel confident that I am on the right track. So I will switch things up and only get my blood taken in May. If that level is also low then my new CT scan and CEA test will be in July – at the six month mark. If my levels are raised in April then we will scan away. I figure I will save myself the stress, and the radiation, if I push it to the six month mark. I haven’t really been able to unwind and enjoy my life in the NED world because my scan is always looming in the back of my mind. So maybe having it every six months will help with that. I guess we will find out.

Fingers and toes crossed that this scan and blood test is clear!

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Clear

I have played out this day over and over in my head before. Many nights I would lay in bed trying to fall asleep and fantasize about my doctors saying to me, “Your scan is clear.” I thought last year it was going to happen, and then was crippled by the news that all of my cancer was back. This year I was hesitant. I felt good and I know that I have changed so many things in my diet that are positive, but there was always the chance. Saying I was nervous would be an understatement. I was an emotional wreck in the days leading up to my results appointment. When the day finally arrived I walked into the office as he said walking behind me, “So your scan looks good.” Get out. I was shocked. Even my CEA blood levels were only 0.3! Chris cried, and I sat there taking it all in. In my fantasy I jumped out of my seat and hugged Dr. Jay. I cried and wanted to film it so I could share the “reveal” video with all of my friends. In reality, I just sat there almost faking happiness.

I am happy. I am beyond happy. I need a clear scan to then have another, and another, and eventually stop worrying every day about this damn disease. I know I will never be “cured”. Stage four cancer patients always live in fear. But I would love to have one day in the future where I wake up and think, “Holy shit I didn’t think of cancer once yesterday.”

For now, I’m going to try and forget that January is just three months away, and this blissful life could come crashing down.

Unknown

Since I have been home from the hospital, I have gone through my usual routine of being a hermit – or so I thought. Usually after any of my surgeries, I spend a lot of my time recovering quietly. Sure, I will go out the odd time, but always try not to make those times too social. I am never interested in talking to anyone – I just enjoy the peace and quiet. So this time I have been the same way, except I should be starting to turn the corner by now. I have been in a “funk” emotionally for the past few weeks and could not figure out what was wrong. At first I thought it was the recovery process, and then I thought maybe it is the stress of the wedding. Both of those do play a part in the way I am feeling, but they still were not enough. Yesterday I finally broke down and figured it out. I’m entering into a world of unknown. I have been here before, last summer to be exact. I had a successful surgery and entered into the “monitor” stage, only to find out after my first scan that everything was back. So this time I do not have the same delusions in my head that maybe, just maybe, I have finally beat this cancer shit. After my post op this week I just am left to sit around until October when I will have my next scan. It weighs so heavy on my mind.

Dilemma

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. 

For Now

I find it interesting when I speak to people these days, I consistantly hear the word “journey” being used.

“Oh what a journey you have been on this past year”

“I bet you can’t wait until this journey is over with”

“Just think in a years time you can look back at this journey you went on and laugh”

I myself may be guilty in the past of using this word in order to help describe my current situation. The truth of the matter is, this is not a “journey” for me – this is my life. There is no end to this experience. After my lung surgery, when the doctor annouces I am cancer free, that will just be the end of one phase. From everyone on the outside life will go on. Slowly the fact that I had cancer will become just a memory for them. New people will come into my life that will not even know anything I have been through. For someone with cancer however – it never ends. There are side effects from every surgery – phantom pains, scars, etc. – these are things we have to just suck up and deal with because we exchanged them in order to save our lives. Every scan creates a mound of aniexty for the chance we will be told bad news. Every time there is the littest amount of pain in a new area – the thought that our cancer is back will instantly enter our minds. This is no journey, because journies usually have a end point. We cancer survivors forever live in the “for now”. In May when my surgeon enters the room with a big smile on his face, and annouces that I am officially cancer free – inside my head I will be saying, “for now”. 

Have vs Had

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.