Circle theory and kvetching

In early 2015 I had a fantastic conversation with my favorite psychologist at Barnes about something she called circle theory. (Somebody recently posted a link on fb about the idea and it reminded me of that conversation.) My psychologist drew some circles inside of each other, explaining that I was the most inner circle, the next circle was Hector, then my closest family and friends, then other family and friends, and so on. I could try to explain it but this article does a pretty good job.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407



I didn't catch cancer like you catch a cold. It's me, my own cells, that for some reason have decided to grow abnormally. To form the tumor that I had in my colon, it likely started with a mutation during cell growth some 5-10 years before I was diagnosed. YEARS.

Cells divide and have mutations every single day. But what causes particular mutated cells to then continue to multiply?

Since my colon tumor grew all the way through the wall of my colon, the mutated cells traveled within my body cavity to my ovaries, to my omentum, to my diaphragm... and who knows where else. The mutated cells got in my blood stream and traveled to my liver... and who knows where else. And the mutated cells entered my lymphatic system and traveled to lymph nodes in my abdomen... and who knows where else. So sure, surgery has removed the original tumor but those tiny mutated cells are now part of me. My scans might not have shown any evidence of disease for awhile but that's because individual cells are minuscule. When the liver tumors appeared on my CT scan in December, they were being measured at 4 to 6 millimeters each, and that's millions of cells. The mutated cells were there all along, just too small to be seen. Chemo has destroyed many cells and hopefully slowed their growth. And it has hopefully slowed the progression of my disease, but I haven't done something wrong and I haven't missed doing something. The cancer was there and IS there. It will adapt to the chemotherapy and there's nothing that I can do about it.

That is the story inside my circle.

Just be

I feel like I'm serious all the time now, even when I'm laughing. Things always feel calculated, with a purpose, for a reason. I wish I could just be sometimes.

Trial and error

I signed the paperwork for this clinical trial today. The trial coordinator told me that I was the most prepared patient that she's ever had. Point for me.

https://clinicaltrials.gov

Back in the saddle again

• Bloodwork and treatment at Siteman West County

It's on like Donkey Kong

I heard from Dr. S's office today and the scan that I had yesterday shows that the mapping went well. The test isotope (tracer) that they used went exactly where they wanted it to. Only a small percentage ended up in my lungs, and that amount is well below the amount that would prevent the procedure.

So we're on for July 6th.

Nuclear

• Hepatic, Splenic Radionuclide Imaging, Tomography (SPECT) in the CAM building at Big Barnes

After the mapping, they rolled me to the nuclear medicine department for a scan. I don't really remember much except that I had my eyes closed on the way back to the recovery room and then suddenly it seemed really bright. I opened my eyes and there I was being wheeled across the walkway in the main CAM lobby (with it's big sunny atrium). Hello world.

Mapquest

• Mapping for the Y90 procedure in the CAM building at Big Barnes

Everything seemed to go smoothly today. My nurse anesthetist was great, Tony was informative and just generally friendly. Although as soon as we got into the procedure room, Dr. S basically told him to zip it. "Tony..." "Yes sir!"

I hope I'll see Tony again when I go back, a familiar face is always nice. One face that I won't see again is the face of the physician that performed my procedure. Although I did enjoy listening to him sing along to 80s pop on Pandora, he is done at Barnes in 2 weeks. From what I have learned, every year the new groups of interns, residents, fellows, etc. start on July 1st. So when I go in on July 6th, I think I'll ask my new person how many of these procedures he or she has done. I could very well be the first. (Their first successful one too!) Dr. S and Dr. P will of course be in the room too, and we already have today's mapping to guide them, but still. It's easy to say that you appreciate a teaching hospital until it's you laying on the table mostly unconscious.

It was pretty weird to be half awake while they worked a catheter from my (right) leg up through my arteries to my liver. I had to be awake so I could hold my breathe at various times while they found their way there. I was slightly uncomfortable a few times but it was mostly just laying there semi-conscious and exposed to the room. Good times.

Mr. Siteman

who-is-the-siteman-in-siteman-cancer-center

Healing

• Appointment with Dr. C in the CAM building

My surgical incision isn't completely healed, and it needs to be, before we can do any new treatments.

Dr. C explained how the healing process is from the inside out... and that he can see (eww) that my inside is healed, but there's just a small fatty layer and skin that hasn't healed all the way. Dr. C thinks that I am good to start chemo next week if that turns out to be the plan.

I'm pretty sure that THIS will be the last time that I see Dr. C.

7.2

• Blood work and a CT at Siteman West County

The results from my CT are in and basically they are "not too bad." There are no new tumors. The four liver tumors have each grown incrementally, as expected since I have been off of chemo since March 22nd. Sigh.

My blood work is okay, except that my CEA continues to rise. I am officially above the normal range for the first time.

Can you hear me now?

Dr. T called today to talk about the discussion that my team has had about my treatment options. And basically we're going to wait until we see next week's CT results before we decide anything. But there are options, and that's good.

What do you mean by NO exactly?

• Appointment with Dr. G at Barnes West County

It's funny to be in Dr. MM's office but seeing another doctor. (There are probably 10 doctors that see patients out of this office, but for some reason it still feels weird.)

It's a short wait before Dr. G comes in with one of his fellows. It's a good discussion. I like him. But. He does not feel like cytoreductive surgery, with chemotherapy put directly into the abdominal cavity afterwards, is a good option for me. The candidates for this surgeon are chosen carefully. It's a major surgery. They take out all the cancer they see. So that could be the rest of my large intestine, it could be portions of the small intestine, pieces of the abdominal lining, etc. (Often the appendix and ovaries come out, but hey mine are already gone!) If they see a tumor, it comes out. That's the idea, removing all cancer and then washing the abdomen with chemo directly, to get anything that can't be seen with the naked eye. But there's no decision making with me during the surgery about what to take or not take. Everything goes.

It's THE surgical option for peritoneal mets. And he's saying NO. To really treat all of the cancer, he believes that the best option would be a stronger chemotherapy. My eyes are getting a little watery, he sees it, I feel it. (Chemotherapy is never going to be a cure, so it's hard to hear this surgeon say that chemo might be the best option. Don't surgeons love to cut?!) Based on what Dr. C saw during my last surgery, Dr. G feels like my disease isn't advanced enough to advocate doing this surgery. (It's about quality of life. Three little words that I love to hate.) He thinks that maybe the surgery could be an option in the future. Hmmm. I ask Dr. G... since we can't see these peritoneal mets on any scans, how would we know when the surgery might be an option? When I start having side effects? Couldn't it be too advanced at that point?

Dr. G takes a moment and recalls a surgery that he did last year for someone with a case similar to mine. He did do the cytoreductive surgery and then at the same time, installed a pump (HAI pump) that put chemo directly into the liver. I can feel the wheels turning in his head. He concludes that the best thing is a discussion with the rest of my medical team and that I should expect to hear from Dr. T's office soon.

More talk about beads

• Appointment with Dr. P in the CAM building at Big Barnes

Dr. P is the other half of the radiology team that would be involved in the bead procedure. (Both doctors will be in the room during the procedure.) While Dr. S will be involved in mapping the procedure and getting the beads where they need to be, Dr. P will be involved in calculating the dose and ordering the spheres. The spheres are ordered specifically for me and that is part of the reason that the procedure has to be scheduled at least a few weeks into the future. My very own spheres of radiation!

Dr. P feels like it is important for me to have a plan for the peritoneal mets as well as the liver mets. He isn't completely convinced that Y90 IS the right thing for me. I mention that I am meeting with Dr. G to talk about the peritoneal mets later today though. Dr. P mentions that the members of my medical team will have a discussion after all of these consultations. *nodding my head* That makes sense. Let's get all of the information and then make the best calculated decision.