Sorry for not updating more frequently, sometimes I hit a wall with what to say. As shocking as that may sound to those who know me.
I wanted to wait to update the blog when I had something substantial. Something huge happening! So I waited. And I had scans done, waiting for a miraculous update.
But the miracle didn’t come.
I know that sounds so hopeless, and I’ll be honest, I was beginning to feel hopeless. My first scan was ‘good-ish’, and my second scan really didn’t show any improvement, but it didn’t show growth. So do I take that as good news? Everyone was telling me it was good news, and that I should stay positive, but I began to feel that chemotherapy was just buying time, that we weren’t going to actually get anywhere, but instead just use chemo for a year to hold off the inevitable.
So I wasn’t feeling great. The idea of going through chemo just for more time isn’t a great one. Mostly because chemo sucks. I hate everything about it. I hate being there, I hate how I feel, I hate how it drains me and I have to rely so heavily on others. Is a year of misery worth the extra year? The answer is still a resounding yes – an extra year to hold my children will always be worth it. But that doesn’t change how much I hate it.
So I felt stuck. We do the chemo for about a year – this type of therapy cannot be given for more than 17 rounds of treatment because of how cardiotoxic it is, and then we figure it out from there.
In steps Dr. Greer. I had met Dr. Greer back in October or November when I was in the hospital for my second blockage. He’s a surgeon who specializes in abdominal surgeries related to cancer, and he came to visit me to discuss if we had to do another surgery at that time. Fortunately, my blockage ‘unkinked’ on its own, and I was able to move forward without surgery at that time. But I did have a chance to talk to Dr. Greer about future surgery possibilities. At that time, he expressed he’d like to make sure that chemo was effective enough that surgery wouldn’t be in vain, but he felt it was certainly something that we could look to in the future.
So cut to the future. Chemo has worked well enough that it has held the cancer at bay, and it looked like I was a possible candidate for HIPEC (hyperthermic intraperitoneal chemotherapy) surgery. I met again with Dr. Greer, and he explained what we would be doing. I’ll try my best to explain, though it’s complicated so I apologize if I miss anything!
The goal with this kind of surgery would be that they could go in and physically remove at least 90% of the disease. They also take anything that looks suspicious at all. If my ovaries or uterus or gall bladder look like there is any evidence of disease, they’ll just take them out. The goal here is not to preserve tissue or take out as little as possible. If it looks suspect and I can afford to lose the organ, it’s gone. As well as vital organs – they’ll take as much out as they can. Once they’ve taken everything they can, and there is no longer physical evidence of disease, they then pack my abdomen with heated chemotherapy drugs. They apply the drugs directly on all affected areas. They leave that for a few hours, then remove and complete the surgery. The benefit of applying chemo directly to the disease is a no-brainer: the direct contact allow for a more effective treatment. My body also will have less side effects from the chemo placed in me during surgery as opposed to chemo that I receive normally because it doesn’t go through my bloodstream, impacting all parts of the body.
So that’s how I understand it. It’s certainly a very serious surgery. It’s not something that can be completed laparoscopically; they will be splitting me breast to pelvis. So I’ll have a wicked cool scar! And it’s certainly a lengthy procedure, taking more than twelve hours to complete. My surgeon and his partner will be taking shifts and breaks during the surgery. I’ll be in the hospital for at least 2 weeks post-op, and will have a LONG recovery after. Dr. Greer said it takes about 6 months for a patient to be back to ‘normal’, with the first 6 weeks being the hardest and essentially bedridden.
I had an exploratory procedure two weeks ago to ensure I was a good candidate, in which they looked with a camera to see exactly where my disease was and where it had spread. There are a few places that sounded scary to me, such as finding it on my liver, but my surgeon shared it appeared that it was more just ON the liver, and not so much IN the liver. He described what he’ll be doing as ‘peeling’, as in he’ll peel it off my liver.
He did share that it appeared I did have disease in my colon, although they won’t know the full extent until the full surgery. That’s a scary concept, because this surgery already comes with the possible side effect of needomg a temporary colostomy bag. Depending on how much of colon they need to take, that could be something I have to live with permanently. WHICH SUCKS. For reals, ew. But, at the end of the day, if it’s between staying alive for my children and living with a poop sack, I’ll take the poop sack.
But seriously, ew. A poop sack.
I have my first pre-op appointment tomorrow, and I believe we’re set for an April 1 surgery date. I finished up chemo a little over a week ago, and I’m on a chemo break until well after surgery. I don’t know when I’ll be at a point where we start it again, but I believe it will come with an end number in sight. Ideally, after this surgery, my scans will be clear, and the follow up treatments will be to err on the side of caution.
So that’s it. I’ll be honest, I’m scared. It’s a HUGE surgery, which is always a scary concept. I feel good about it though. While HIPEC for my cancer type isn’t the most common, my surgeon has experience with HIPEC for other cancer types, and shared he does this surgery on nearly a weekly basis, so he’s certainly qualified. More than being scared, though, I am truly excited. THIS is the miracle we’ve waited for. I feel certain it is. This is the difference between buying time and finding a cure. I know it is. So while this is scary, and I’ve got a LONG road ahead of me, I’m ready. I’m ready to take this leap towards a cure.
Thank you to all of you for all of your support along the way, and keep up those prayers. I can’t express how much I appreciate you all along on this journey with me. I could not even begin to deal with all of this without my amazing support system, and of course, my reminder of just who this fight is for.