Phew – I can’t believe how much has happened in the past week! All I can say is that I am glad the past few weeks are now behind me! If you read my last post, you know that I was increasingly in pain with two medical teams not agreeing on the next of course of action. In the beginning of January, I ended up having a nuclear medicine scan of the gallbladder that showed that the gallbladder was not functioning right. Turns out that my doctors at Shands were right and they recommended removing it. Apparently when it stops working properly, there is nothing to do to reverse the damage. I got a call from my oncologist Friday at 6pm explaining all this and indicating that yes he would agree that we could use this opportunity to remove the tumor in the colon, something I have been asking for quite some time. He told me he would get in touch with his colorectal surgeon to ask him if he could do both surgeries laparoscopically and in one surgery. (For those not familiar with the term BOGO, it’s a sales pitch that means “Buy One Get One free”). The following Monday, I received a call for a “surgical consult” scheduled for the following Thursday and found out that the surgeon did surgeries on Wednesdays and Fridays. I asked if there was any chance that I could have the surgery done the Friday after the consult but no one could give me an answer and it seemed pretty unlikely. I was not too thrilled about driving 6 hours back and forth just for a consult but what other choice did I have? I have learned that it is always best to have a colorectal surgeon resect a colon (as opposed to a general surgeon) and there is none locally. My GI oncologist also made a good case about the fact that all my recent scans and angiograms were done at Shands and would be readily available to the surgeon and if there was anything funky with the blood vessels, my interventional radiologist could be called into the procedure. It all made sense and made the drive worthy. So Thursday morning I left the house before the sun rose. I decided to be prepared for the possibility of a next day surgery. I left my jewelry home, packed a bag, and even started the “clear liquid diet” part of the bowel prep. I knew that a colon resection required the same prep as a colonoscopy. I met with the surgeon for about 20 minutes. He told me he had spoken to my GI oncologist and explained what the surgery would entail and reviewed the risks. According to him, my gallbladder was “borderline” so he couldn’t promise that removing it would make the pain go away. Then he stated a few times that removing the tumor in my colon at this time was not “standard of care”, they would only remove it if it was obstructing. He then discussed the less then 3% chance of ending up with an ostomy (bag). I asked him the question “what if it was your wife, would you do it?” and he responded that he wouldn’t be offering it to me if he didn’t think it was a good idea. He then said he was going to go look at his schedule and come back with a date, stressing that I would be lucky if it happened within the next 2 weeks. I pleaded my case for “sooner rather than later” given the amount of pain I had been experiencing and asked him if there was any way it could be done the next day. He came back about 15 minutes later telling me that someone must be watching over my shoulder, someone had agreed to change their date and I was in for the next day! I called Fred ecstatic as if I had won the lottery and he was going to call his parents to come stay with the boys so he could meet me for the surgery. I then had a long list of tests to get done but thankfully it was all there at the Hospital. I dropped off my prescription for the “go-go juice” at the pharmacy and headed to the different clinics. Then what the surgeon said sunk in. “Borderline gallbladder” “risks of ostomy”, and “not standard of care”. As for the borderline gallbladder, I started wondering if I had exaggerated my symptoms, the scans were coming back fine and it didn’t look “that bad” on the HIDA scan, was I just being a wuss? But then again, I think my pain tolerance level is pretty high, I had been in pain for 5 weeks and had to spend way too much time in bed feeling horrible. Many times I had thought about going to the ER but was afraid that they would just drug me up so I knew my pain was real and something really needed to be done. The risks of ostomy were low and I had been in touch with someone who had had this surgeon do a very touchy surgery on her and he had spared her from a bag so I was feeling reassured. My tumor was in the ascending colon and 2 other surgeons had already told me it would be easy to remove it laparoscopically and that there would not be a need for an ostomy. And this surgeon told me that if I woke up with an ostomy, most likely they would be able to reconnect the bowel a few weeks later. Then the “not standard of care” thing crossed my mind. I then thought about the conference I attended in DC on colon cancer where an imminent GI oncologist point blank told us “the standard of care for colon cancer sucks”. He is right, that I know. I have always believed that I would be better off without this tumor. I think my doctors were getting impatient with me with always wanting it out. I don’t have a medical degree but I have spoken to many long term survivor of a stage 4 diagnosis and everyone I know who has made it long term had their primary tumor removed so I held onto the thought “the standard of care sucks anyways”. My surgeon had also explained how my GI oncologist had said that with the primary tumor out of the way we could be more aggressive with the liver which is true and the tumors on my liver are the ones we need to be most worried about.
So after completing all the tests, I picked up my prescription, stopped by publix to get tons of fluids, straws, flushable wet wipes, and gum. I booked a room at the modest little hotel where we have been staying when I have appointments and checked in. The room looked exactly like the other ones we had previously stayed in and sadly I wouldn’t be able to hang out by the nice fireplace in the lobby, I needed to stay close to the toilet. I mixed my 4 liters of water with the prep mix, rearranged the furniture so that the chair was close to the bathroom, found something to watch on TV, and started sipping the prep (the straw helps you not taste the bad taste as much – a good tip from my Colontown peeps). Fred arrived around 10pm and kept me company while I was drinking the rest of the juice and he had a really good laugh when I finally broke the toilet handle from flushing so often!!! yes the joys of bowel preps! To add to the stress, this was my first time using this one type of prep and it didn’t seem to be working as fast and as well as the other ones and I was so afraid I wouldn’t be ready in time for the surgery. I made it though but it definitely added some stress.
Friday morning we headed out to the Hospital, the “Spa Side” as I like to call it. Shands has two main campuses and their South Tower is definitely much nicer (and newer). In the surgery prep area, they even give you a “warming gown” that they plug into a heater and you can control the temperature! Everything was on schedule, the surgeon came by and told us the surgery would be between 3.5 hours and 5 hours and it took 3.5 hours. Everything went really well. I woke up without an ostomy and was so relieved! The surgeon indicated that everything had gone really well and that the gallbladder was “pretty scarred and looked very unhealthy” which put my mind at ease, I felt like I had truly made the right decision. Interestingly, they have to cut an artery usually to remove the gallbladder and in my case the artery was no where to be found. We think this is a result of the artery dissection in my liver from the radioembolization so the gallbladder was most likely not getting enough blood flow – now why was this not showing up on the scans remains a mystery. The other good news is that the surgeon was able to take a good look at the abdominal cavity and did not find any suspicious spots, everything was squeaky clean! My tumor and nearby lymph nodes were sent out to be biopsied and I am still waiting on those results. My recovery in the Hospital was pretty good, it was rough I must admit but nothing I couldn’t handle. Fred stayed with me until Saturday night and came home. I was fine, I don’t really like having people look at me in pain or not feeling well anyways. I thought it would be much more productive for him to be home with the kids then to just wait with me for my body to start passing gas! (This is why I had bought gum, I read it could help the bowels wake up). When I finally did, I was able to eat again and as soon as they felt that the new plumbing was working they sent me home! I am glad to be home with my family, it was so heart warming to have my boys run out of the house to greet me when I arrived, it makes pulling through all the pain and side effects so worth it. I felt so lucky that my in-laws were here to help with the boys.
One thing I have learned for sure through this process is that I need to listen to my body. Getting my gallbladder out was definitely the right thing and only time will tell if it was for getting my colon resected.
Thank you again for all your words of encouragement, they really help, especially in the darkest moments.