Tag: lymph nodes

No Lymphatic Spread

Today, for the first time since this whole nightmare started, I feel hopeful! We had our follow up meeting with the surgeon who did the HIPEC today. He is extremely happy with Andy’s progress and his incision looks really good! He said that all the lymph nodes that were removed, about 20 of them, came back negative for the cancer. HUGE. SIGH.

Breathe. I can breathe!

I am so relieved. I mean, SO RELIEVED! Andy was relieved too. Through all of this, I have been critical of his lack of emotion. He is just a stoic human, that is who he is. But the few times that he has shown me some sign of emotion, it has meant EVERYTHING! Honestly, I can count the times on one hand. 1: The night he told me about the cancer. We both cried, he was clearly upset. It was the first time he had even spoken the word out loud and it was terrifying. 2: The day of the colonoscopy, when the doctor said that she saw no sign of disease. He fiercely grabbed my hand, and with some short breaths and a winced face, he said in a squeaky voice, Oh thank God! As if he could have broken out immediately into tears, but he didnt. He stopped just short, and we sunk into a deep hug instead. 3: Today at the doctors office. He asked about the lymph nodes, and although we assumed that no news was good news, we still had to hear the answer. When the doctor said that the results were negative, Andy grabbed my hand once again, and squeezed it so tightly. I could hear an audible sigh of relief coming from his voice. We were both so relieved.

The fact that I wear my heart on my sleeve shouldn’t come as a surprise to anyone. When my emotions hit, I often overindulge them, both sadness and happiness. I act quickly, often putting my foot in my mouth or saying something sans a filter and regretting it later. This probably happens more than I would like to admit. I’ve lost long time friendships because of this and I’ve damaged relationships. I’m brash, I can be a bit overbearing (especially if I’ve had a drink or 2) and I tend to overreact. But Andy grounds me and puts me in my place, if need be. Its a dynamic that cannot be duplicated and although, as you know, the things he does sometimes infuriate me beyond belief, they are also comforting in a way that I don’t even understand.

At the doctors office, we sat there talking with the doctor and the assistant for a good 15 mins. We asked our questions and when I asked him if he were in our shoes, and knowing what he had seen in our case, what would he be most worried about, he said the disease on the small intestine. This is good to know. He said that spread to the small intestine is often difficult to treat because you can’t just remove the small intestine. He said that he definitely recommends we do the systemic chemotherapy and we not put that off.

Ok, noted. We definitely will not be putting that off. Whichever treatment course we decide on will begin in early July. We meet with the specialists the last week of June, make our decision and then move forward with the regimen. That’s our plan. It feels good to have some structure back in my life. All this waiting and loosey goosey tentative-ness is enough to drive me mad. The dr said that they would do an MRI scan (which he recommended over the CT because there is less radiation involved … which, if you have cancer, ya know, extra radiation is not really a good thing) at around the 2 month mark, before chemotherapy starts. This scan will sort of serve as the baseline for all new scans to be compared against. Even though, he said, the scan will show “thickening” because of the scar tissue and the healing that is still in progress, it will be better than nothing. I asked about the frequency of collection of the CEA and tumor markers, and he said they’d do those every 3 months. Tho he did caution that because Andy’s was already low, they might not be a good indicator of recurrence. He said that if they started out high and then got low after the surgery, that would be one thing, but because his CEA was already relatively low, it might not be the best predictive gauge. Ok, fine. But I still want it tested.

We made another follow-up appt with Dr. Glasgow, our surgeon, for 6 months. He said that he wanted to stick with our case and will be consulting with our oncologist, Dr. Rigden, who will run point for the near term. I don’t love Dr. Rigden, but I do love Dr. Glasgow, and if he trusts her, so do I.

I have learned that positivity will get you so far with the cancer journey, but having the facts and speaking with the people who hold your life, literally, in their hands, is essential. We still have yet to hear from the Sloan Kettering program, so that’s annoying, but I am hoping we hear from them today so I can start getting flights and lodging booked for our trip. That’s the last piece of this puzzle I need to get organized, then I will feel absolutely whole.

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.