Curative Pathway.

Again, I wont beat around the bush. I get to have surgery!!

I drove down to Loma Linda Tuesday in the pouring rain to meet with my surgeon to discuss the next step. I’m telling you, I like that facility. Free valet parking for cancer patients? Clean facility? People who smile at you, look at you when you speak to them, walk you to where you need to go? It’s pretty great. Checking in, easy. Long wait for the doctor? Not really, (normal amount of time I’d say. I mean there was waiting but I didn’t even get through my instagram feed).

If you remember, last time I spoke about surgeons it was depressing. The atmosphere was one of bad news and solemn outlooks. This time was different. The atmosphere was one of congratulations and hesitant optimism. But it was definitely still very sobering. My surgeon was very pleased at how my tumors had responded to the last two months of chemo. He highlighted the fact that when he first saw me I was not a surgical candidate. The disease outside my colon was too extensive, and where it continues to be extensive, my tumor markers indicate I have about ten percent of the disease I had at that time. A ninety percent drop in metabolic activity of my cancer is a really big deal. Now he can confidently say that I am on a “curative pathway”. Which means I am now on my way to completely eradicate my cancer. Man, that made me smile.

Then we went nitty gritty, what does the curative pathway entail, the steps to take, all the risks, and what’s next. As I try and explain all of this it gets jumbled in my head. I hope its not confusing and that I can explain and organize it in a way that it makes sense! This is a very long post and kinda complicated. I’m so sorry I’m a writing processor because I processed and made sense of a lot of things while writing this! (Some of this will be redundant and a review from previous posts but its important to get the full picture.)

The primary tumor in my colon is smaller. It will need to be taken out. It will require the portion of my colon with the tumor to be taken out and the remaining colon will need to be reattached together. (Like taking out the middle of the colon then sewing the top and bottom together.) This may require a temporary ileostomy. Which is an obvious disappointment. An ileostomy creates an exit point in my abdominal wall with the part of my intestine above the colon, the ileum. This may need to take place in order to allow the colon to heal. When you separate something then reconnect it there is potential for it to leak. Leaking would be horrible!! This causes infections and prevents the body from healing and all kinds of awful complications. Not to mention the theoretical concept of  my excrement floating around in my abdomen! If that happened it would require an additional surgery to open me up and eliminate the leak. So yeah, give me an ileostomy if you have to in order to decrease risk of that happening please! This would mean there would be a “poo bag” outside my abdominal wall for a while. My thoughts are these… “ummm… gross” and secondly, “this is going to get in the way of all my CrossFit. How can I weightlift with that!?” Great.

Next lets look at the secondary tumors in my liver, also smaller. This is where things really get “fun”. All four of these tumors also need to be removed. I mentioned last time that every time we go over the scans I get a better idea of where the tumors are oriented within my liver and also in relation to each other. He described the one big one in my right lobe, simple yeah. But he corrects my understanding of the three smaller ones. Apparently what makes surgery so complicated is that they are not completely contained within my left lobe. He describes them as more scattered within the left lobe and the central part of my liver. Couldn’t this cancer have just been a little more considerate and stayed in one part of my liver? If they were isolated within the left lobe a lobectomy would be easy, however, since they are also in the central part of my liver a lobectomy would just be taking out too much liver. It is safest to resect the three smaller tumors from my left lobe individually and in the same surgery get rid of the primary colon tumor and create a temporary ileostomy. Then have a second surgery once the liver has regenerated and my body is ready to go through it all over again to undo the ileostomy and remove the larger tumor in the right lobe of my liver. Spoiler alert, this is the plan we are going ahead with.

[Side note (skip if pressed for time as this has no relevance to the report of my surgical consult): In high school my brother’s friends and I used to do a lot of hiking in the local mountains. There was this beautiful waterfall we would hike up to and jump off of, blah blah lots of irrelevant details… Well one hike we were up there jumping off the cliff into the pool below when this troop of beginning rock climbers or something comes down the stream and proceeds to repel down the waterfall. They all had matching helmets and brightly colored brand new gear. As they were beginners they were clearly not adept at the task they were undertaking and very uncomfortable.  At the time, we felt very much superior and intruded upon, a bunch of high schoolers cliff jumping versus this organized, uneasy, overly, cautious troop. So what do we do? Start a chant of course. “Safety first! Safety first! Safety first!” And then proceed with our daredevil activities. I feel very much like I joined the troop of beginning rock climbers. Not that I mind, this is my life. So yeah let me strap on a helmet, clip into the ropes and repel down the waterfall instead of carelessly jumping off the edge. But I feel very out of place.]

So we have a surgical plan but how complicated is it? And what are the other possible options? And most importantly, what are the risks? I mean it could make a person dizzy going over all this stuff. If you are content with the plan as is and the risks and confusing options aren’t necessary for you, dear reader, you have my permission to go no further. Just stop reading. We’re good. I will be in the ICU for one to three days (what?!!!) and be in the hospital for seven to ten days (if there aren’t complications). February sixth I go in for pre-op and February twelfth is the surgery. Mark your calendars folks this is terribly official and I will be counting on support and prayers to make impossible things my reality. Buuuuut if you want the full picture this is where things get interesting.

Now mind you what follows is my understanding of things I was previously unfamiliar with so I hope it makes sense… Removing the tumors will most likely require two surgeries. As previously stated, this is the safest option. However, the surgeon wont really know until he opens me up and gets in there if one surgery is preferable. Two main things determine one versus two surgeries. How much of my liver is left after removing the three smaller tumors and how long it takes to get all three tumors out. He does not want to do a lobectomy and simply remove the left lobe of my liver, he plans to go in and individually remove each tumor from my left lobe leaving as much of my liver intact as possible. I will be put into a semi dehydrated state to decrease the amount of blood loss (there was a fancy acronym for this that I can’t remember), but this only lasts a short time because it’s really not good for me to be in that state for too long. If there is enough liver remaining after removing the three tumors in my left lobe and enough time left for me to still be in the dehydrated state, he will go ahead and remove the larger tumor in my right lobe at that time. Then he might say, “Ok, thats’ enough for her body to handle she can come back for the colon surgery once the liver and her body heal.” Or he can say, “Let’s get after it and get the primary tumor out of her colon too.” What I have just described is highly unlikely and best case scenario for me, one massive surgery with no temporary ileostomy.

But one thing we know is chemo works, it keeps the cancer shrinking and manageable. Another thing we know is when I am not on chemo tumors grow fast and aggressively. So to be off chemo while I’m recovering from the surgery means any tumors left will grow and potentially spread. To avoid surprises and ensure that there isn’t cancer anywhere else I need a repeat PET scan (you may remember, it’s the isotope injection one). This is the one of the last hoops to jump through before surgery. We know that staged surgery is safest for my liver but there is also increased risk. One reason why the liver regenerates is it gets a flood of growth hormones, which means the tumor in my right lobe also gets growth hormones and without chemo keeping in check… well, it’s going to grow. There is the potential for it to grow to the extent that when it comes time for the second surgery there isn’t enough good liver and removing it then would mean… certain death. Then of course theres the risk that the liver wont regenerate at all and again if the liver doesn’t grow back and the tumor grows there wont be enough good liver and… certain death. You may think, “Oh Amy, that’s silly. You would just get a liver transplant!” Well, there’s this whole “cancer disqualifies you from a liver transplant” thing that means I’m not a candidate for a liver transplant and if my liver goes into failure… certain death.

My poor surgeon was confused by my reaction innumerous times.  I’m certain he’s not used to discussing risks with people as healthy and young as I am, and apparently, he’s also not used to discussing risks with people who have a sense of humor. He is probably more accustomed to emotional break downs when certain death is on the table. Instead he got me, repeatedly laughing at how absurd it all is. I smothered so many giggles that some couldn’t help but escape. I mean it’s so ridiculous that all this is real sometimes that it’s legitimately funny to me. I’m not talking nervous laughing or filler laughing. I’m talking this is very humorous to me that I am in this position shake my head, slap my knee, laughing. I kept the knee slaps out of it while he was in the room, however.

More risks did you say? Heres one. The metastasis in my lymph nodes are still there. The radiologist says they aren’t there but thats because on a CT scan the lymph nodes have returned to normal size. Chemo is working all the cancer is shrinking. However, my surgeon could still see the cancer because he knew where to look and what he was looking for (or something). This is an area of concern, however, when I’m off chemo for those months recovering from surgery. No one has time for the cancer to spread to my lungs or my brain via my lymph while I’m recovering. No one! He casually mentioned perivena caval radiation as an option to address this. However, this is another reason the PET scan before surgery will be important. We need to assess the extent it is in my lymph nodes and in addition to the no surprises part, there is the possibility that the cancer in my lymph nodes is secondary to cancer somewhere other than my colon as the primary. But all will be made clear with a PET scan. In conclusion, he said, “So as you can see this surgery is very risky, you could die, but when you compare it to the risk of not having the surgery, this cancer would with 100% certainty take your life. The risks of surgery are minimal by comparison.” This was another part where a laugh escaped me and I said something synonymous to “duh” (much more eloquently of course).

Truly the fear pit falls are crrrrazy!! It’s definitely a “don’t step here”, “jump over that”, “duck under this”, “dodge those” way of life, let me tell you! Staying within the boundaries of what you know to be true and having faith for what that whispering voice of God tells you is true despite contrary evidence is exhausting! Why don’t more people say that? Faith is exhausting!! Don’t play the what if game. Don’t take the what if’s into your heart or even your mind as tangible fears. The what if game has no winners. It never prepares you for reality, it only feeds fear. I have primary colon cancer that is resectable. The tumors in my liver are also resectable. The cancer in my lymph nodes that has been responding to the chemo for my colon cancer, is secondary to my colon cancer and will continue to respond to the treatment for my colon cancer. Fear thoughts are to be banished and not entertained for a minute! So if you had any doubts about what to believe or worry about on my behalf let me set you straight. First off, let me tell you now this surgery will be a raging success! Any thought that opposes that is to be dismissed! No, my colon anastomose will not leak excrement into my abdominal cavity. No, the liver resections will not be so extensive that I go into liver failure. Yes, my liver will regenerate, it will not be his third case in twenty years of surgery and six hundred liver resections where the liver didn’t regenerate and the person died. No, the tumor in my right lobe will not grow to the extent that it wont be resectable for my second surgery. No, the second surgery will not have to be delayed because of complications. No, the cancer in my lymph nodes will not spread while I recover. No, the cancer in my lymph nodes is not secondary to another cancer that hasn’t been diagnosed yet. Most importantly, no, certain death is not on the table for me. Everyone understand? Those fears are truly laughable and are to be treated as such. If you want to worry about those things I just feel sorry for you.

Also please understand in healthcare “Risks and Benefits” is a mandatory part of any medical intervention. Meaning my surgeon is legally required to explain every single possible risk with me before the surgery. I knew this going in which is also why some of it was so funny to me. I know, or have faith, that a lot of what was discussed really isn’t possible for me and is a generic risk that needs to be discussed as a formality. How hilarious that I fit into that level of formality?! The part of the conversation that was the most sobering to me was discussing what “recovery” would entail. The conversation went something like this. “Doctor, you mentioned one to two months between the two surgeries. What determines when I will be ready for the second surgery?” “That will depend on how your body recovers. Once you can eat, drink and walk you’ll be recovered enough for the second surgery.” This was where I started laughing at how absurd this was. Was he really saying it might take me up to two months to be able to eat drink and … walk? I thought of how I was planning on at least walking through the upcoming CrossFit Open workouts a couple weeks after my surgery. I think he got a little offended at my humor because he followed up with, “You need to understand this is a major surgery and will take a tremendous toll on your body. Essentially this surgery is four parts, your colon, the left lobe of your liver, the center of your liver and the right lobe of your liver. Any one of those components is enough to keep you recovering for a month but your surgery will require four.” I stopped laughing. I knew how to block my mind from fear but I don’t think I was quite prepared for the gravity of how truly extensive this surgery would be or how great a toll on my body it would take. But in the war for optimism, I don’t think I fit within the demographic that generates these projections. I think he isn’t used to performing this surgery on anyone as healthy as I am or on anyone as comfortable and familiar with pushing themselves as I am. I expect all of his projected time frames to be exaggerated. I think I’ll be out of ICU faster than he projected and out of the hospital faster than he projected and I will most certainly be eating, drinking and especially walking much faster than he projected. In fact, I’ll take it so far as to say challenge accepted sir! So I’m sticking with the perspective of I am so excited for this surgery!!

The absolute best news in all of this, with the exception of being on a curative pathway, is that I have only one more chemo before surgery!! Which means I will have three whole weeks of feeling amazing before surgery! Bring on weekend trips, beach days, painting, gardening, poetry, hiking, and most especially workouts with a little intensity!!