How much can one liver take?

I talked to Dr. P this morning. He was easy to talk to on the phone... and I am rarely comfortable on the phone talking about all of this medical stuff. That's some good news. Some bad news is that the scan we did after the Y90 procedure showed that only 2 of the 4 tumors in my liver received enough beads to likely be effective. And after the way that I've felt the past week, that was really hard to hear.

Thanks to the clinical trial we have this information today, rather than in 6 months, when the tumors would likely still be growing on a follow-up CT scan. So, what do we do with this information now that we have it?

The 2 tumors that didn't get enough beads are the most external ones and are good candidates for some type of ablation, either burning them or freezing them or basically microwaving them. So tomorrow I should hear from Dr. S's office about scheduling an ablation procedure.

A little less green

• Visit to the Cancer Care Clinic in the CAM building at Big Barnes

Dr. S's nurse is off today but when I spoke to her yesterday she recommended that I speak with my oncologist's office today if I needed anything. So by lunchtime, since I still can't keep down water or any medicines, I placed a call into Dr. T's nurse's line. They decided to make an appointment for me at the Cancer Care Clinic for evaluation. It's a 24/7 clinic, available by appointment for Siteman Cancer Center patients, to hopefully keep us out of the ER and to get us the treatment that we need by specifically trained staff.

For me, it's fluids. More than a bag and a half of fluids, as I am dehydrated. It's also IV medications, since I haven't been able to keep pills down. It'a a cycle and by getting fluids and meds down, we're hoping to break the nausea cycle. After 4 or so hours, we head for home. Apparently, I have noticeably more color in my face. That's a good thing.

Di's Body 0, Science Beads 1

I'm googling everything that I can to try and figure out what the heck is going on with me. And it seems that having this kind of vomiting and pain isn't really as abnormal of a reaction as I first believed.

Side effect information from one of the bead producers

Y90 information from another trusted university medical center


Dr. S's office called in a steroid today that might help the inflammation in my liver that could be causing the pain and pressure. And I'm continuing to try and keep pills down and to keep my fever down, but it's just rough. As soon as I even get bile in my stomach (a natural body process), up it comes. My body is not happy with my science beads.

Just a girl and her vomit tray

• PET/MRI scan at Big Barnes for my clinical trial

I have no idea how Hector got me down to Big Barnes today. I have no idea how I got strapped in and held it together for the 45 minute scan. Mind. Over. Matter. We both know how important the scan is and we got it done.

The tech and his assistant, along with the nurse who started my IV for the contrast, were fantastic and supportive. They're all rooting for good news with me. And they somehow got me through the scan this morning.

Oh Canada

• Y90 procedure in the CAM building at Big Barnes with Dr. S

A young new resident came in to greet us and to go over some of the details for today's procedure. He has another procedure that he'll be doing at the same time as mine so somebody "higher up the chain" will be doing my procedure. He shares that it is a "win win situation" for me. I hold off on asking him how many of these that he has done. I did ask him about pre-meds, will they give me anything for nausea or pain? He confidently answers no, they won't be giving me anything, as most people don't get side effects that require medications.

We waited in pre-op for a few hours, but when they finally got me back to the room, Dr. S performed the entire procedure. He did have an audience of newbies and I do randomly remember hearing one of them say that he had just graduated from the University of Toronto medical school. Welcome to St. Louis? Other than that, I'm pretty out of it and I only remember the nurses remarking, more than a couple of times, about how quickly it went with Dr. S in the lead.

So that's the good news, the actual procedure went well. However, when I wake up I have alot of pain, pressure in my abdomen, and nausea. The nurses (even my favorite from the mapping) give me a couple pills to help, but I can't keep even water down. They try giving me a "light meal" of a turkey sandwich and grapes, but after a couple bites, that all comes back up too. They talk about post-radioembolization syndrome and a quick google search brings up side effects of fatigue, nausea/vomiting, abdominal pain/discomfort and cachexia (weakness of the body due to illness). But an hour later we are on our way home with vomit tray in hand.

Run Forrest Run

Back in February, I felt compelled to enter the participant lottery for October's Chicago marathon.  Something just came over me one day and before you know it, the application was submitted. And... I got in. Then... my treatment plans for the rest of 2016 changed dramatically. So here I am in the beginning of July and not even able to run to the mailbox. But over the last week, I have walked more than the distance of two marathons, so I'm considering that a success. Marathon(s) completed.

I'm able to defer my marathon entry for one year, so I could wait and see if 2017 will hold better things for my health. The likelihood is small, and there will probably be more important things for me to worry about next year, but who knows. Because of the minimum time requirements once you are on the marathon course in Chicago, there's really no way for me to walk it. I could start it and then at some point, they'd usher me to the sidewalks. I suppose that's a possibility. However, there's this little thing called FOLFORI (chemo) that will probably be standing in my way of enjoying being active for the unforeseeable future.

Colontown

An on-line support community of similarly diagnosed cancer patients who can share stories and advice with each other can be a very helpful place. Unfortunately, in the world of incurable cancer, it can also be a very sad place. Every week in the small subgroup for stage IV colon cancer patients, there are posts from administrators and members about other members who have passed away. The last few weeks have been especially difficult for me to process as two people (both younger than me and each with young children), that I have had a chance to chat with over the last two years, both passed away. I would never invade their privacy by posting their pictures or names, but I will think of them everyday. I will remember their beautiful smiles and our candid conversations.

I found this newspaper article to be especially fitting today, written by another stage IV friend...

http://www.philly.com/philly/blogs/diagnosis-cancer/Living-with-.html

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