Tag: right colectomy

MOAS

May 6, 2019 Today’s the day I’ve been dreading. Here I sit, 3:43am. Unable to sleep. Laying next to my husband in bed for what could be the last time in a few weeks. He is sleeping, I am worrying. I can’t sleep, tho I am exhausted already from what I know will be a grueling day. We rented an AirB&B close to the hospital so I could have a “home base” somewhere other than the hospital waiting room. Patience has never really been my thing, so waiting for what could be 12+ hours as my husband is sliced open, laying completely exposed and vulnerable on a cold operating table, is literally my nightmare.

Still, here I sit. Awake.

Today’s the day that everything changes. My husband does not know much about the surgery he’s going into. He knows, however, that I have become an expert, and he looks to me for just a little bit of guidance when he’s curious enough to ask. By now, I know how much info is too much for him and I’m beginning to become really good at figuring out exactly what it is he’s wanting to hear. Not details, nope, he doesn’t want those, he wants to know outcomes. I can’t blame him. I can’t say that going into this completely blind and unaware of what they’re going to do is any more or less a strategy than knowing exactly what each and every phase of the procedure entails. Who knows if I would want to know as much as I do if roles were reversed? Scratch that. I definitely would want to know.

I’m terrified.

How will this recovery be? My husband seems to have his eyes set on a 10-day max hospital stay and a good bill of health to be driving in 2 weeks. (rolls eyes) From the research I’ve done, I know a more realistic stay would be 10-25 days. With fully functional mental capabilities (meaning the ability to be productive at work) in 3-4 mos. His work is being extremely flexible, just as mine is, and they have told him they’ll just continue to pay his full salary until he comes back to work. He has refused to even think about filing for short term disability, which is extremely frustrating for me since I think he is going to be out far longer than he expects. But we don’t know what we don’t know right now, and I guess that’s okay. Who knows? He might prove me wrong and be up and popping about within a few days of this surgery!?

How will his scar be? Is it terrible that I am worried this scar will be disastrous? I look at his chest now and all I see is soft skin. I am nervous that this ugly hard thing slicing down the middle of his chest and stomach will be a constant reminder of cancer, and I hate that. It will ruin a physique that I adore and is completely perfect in my eyes.

How much will our lives change? I’ve been spoiled having Andy as a husband. He has taken on a huge part with raising our youngest. He gets up with him in the mornings, he gets him ready for school and gets breakfast made for him. Mostly just opening a pop tart and grabbing a cup of fruit or a banana and some cheeze its, lol Breakfast of champions! But HE does it and allows me to sleep. He brings him to school on his way to work and also picks him up on his way home. He does it not because I can’t, but because he wants to, and he enjoys it. How will all this effect our little routine-driven 4 year old when daddy can no longer take him to or from school? It’s just so much change all at once and it scares me.

We filed his advance directive and power of attorney paperwork with the lawyer this week. I refuse to go into this naive. I know that everything will be alright, but we need to be prepared for any situation. It’s bad enough having to think about estate planning and end of life planning when you don’t have cancer, but thinking about it knowing that you might need it sooner than later? Awful.

I guess I’m not going back to sleep tonight (this morning?) Too much on my mind.

Face the Facts

Thursday, April 11, 2019 08:15am That’s when we got the confirmation. It was Mucinous Adenocarcinoma of the Appendix. Our appt with Dr. Glasgow was short. I had no idea what questions to ask, I had no clue what the diagnosis meant or what our next step should be. Unsure of what to do or what to ask, I opened my laptop and frantically typed, word for word, what was being said during the meeting as if I were some manic court reporter who’s only job was to document every syllable. I knew neither one of us would remember what was being talked about and I definitely knew that I would want to know at some point, so I typed. Its all I could do.

We were given another surgery date, 2 weeks away, and a series of tests that needed to happen prior to that surgery. We were told that we had a Plan A and a Plan B for the surgery. Plan A consisted of a right colectomy, in which they would take out the lower quadrant of his colon (which contained the closest lymph nodes to the tumor) to rule out lymphatic spread, and also do a bit of an exploratory effort while they were in there to make sure it had not spread to any other visible areas. Plan B was in case they got in there and saw that it had spread to other areas. Plan B consisted of an extremely invasive, extremely long surgery in which a technique called HIPEC would be used. But we didnt worry too much about Plan B since we were sure that everything was fine and this was all going to be done and over with quickly. So fully implementing Plan A was really the only option we had considered since the dr who removed Andy’s appendix noted in all the charts that NO perineural invasion was identified — meaning, he had not seen evidence of spread at the time of his appendectomy, and that was only a week ago. We were confident that all this was just preventative and everything would be fine.

Meanwhile, I continued to learn as much as I could about this diagnosis. I found (and purchased) research papers from academic websites like The American Society of Colon & Rectal Surgeons and the US National Library of Medicine and The National Institutes of Health, I searched through photos on Google to see what this little shitty cancer looked like, I read article after article, I joined facebook groups for survivors and those who were in a caretaker role, I asked questions about things I had never thought I would need to know about in my life. I NEEDED to know what I was facing, I had to be informed. Knowledge is power, and it became my coping mechanism. I knew that I would want to ask questions, but I needed the information to even formulate the questions that I wanted to ask. I needed to know what was a good answer and what was a bad answer, I needed to understand what different scores meant and how it related to overall survival rates and what the percentages were for each factor. Here are my husbands scores:

  • CEA tumor marker: 3.2 (collected on 4/11)
  • CA19-9 tumor marker: not tested
  • CA125 tumor marker: not tested
  • Histologic Grade: G2 moderately differentiated (collected on 3/29) High-grade
  • Histologic Type: Mucinous adenocarcinoma
  • Primary Tumor: pT4a (collected on 3/29) with serosal implants present
  • Tumor size: Cannot be determined. Scattered foci over 9cm, spanning the length of the appendix, without dominant mass
  • CC score: unknown at this time (will be collected during surgery)
  • PCI score: 4-5 (estimated on 3/29)

So what to do now? I kept reading. I read everything (with google open so I could google every word or phrase or acronym for which I didnt know the meaning … and that was A LOT.) And by the time I was done, I felt like an encyclopedia for this ridiculous cancer. I could spew survival rates for each type, good thing we don’t have the one with the signet cells, I’d tell myself to try to help the 38% survival rate, if metastasized, for what he had look just a tinsy bit better. I combed through document after document to try and find a better outlook, but I couldn’t. So this HAD to be something we nipped in the bud now. Plan A was a go, and we would take all the steps we needed to prepare as best we could for the surgery.