Ugh

This recovery is kicking my butt. It's been a rough two weeks. Shoot, a rough four weeks. I'm ready to have a nausea-free, vomit-free, pain-free, fever-free kind of day.

Hopefully we see some results from the Y90 and the cryoablation. I REALLY need to see some results from all of this.

Guard cat

Stripes is giving me my space today and guarding the entrance to my room. I can't help it, I love this little guy.

Nurse Stripes

He's keeping a close eye on me today.

Home sweet home

• Discharged from Big Barnes for home

I stayed one (noisy) night with my roommate but by late afternoon, they are ready to kick me out for home. Hooray!

Scan me

The resident came by with some additional paperwork for me today. During my procedure yesterday, I had multiple CTs as they positioned the ablation probes around the tumors. They had to do more CTs than usual as they got the probes into place and I went over the daily accepted radiation amount, just barely. So they had to notify me officially and send me home with some more paperwork.

Frozen

• Cryoablation on 2 liver tumors at Big Barnes with Dr. S

Today definitely didn't go like I thought it would go. As was explained to me prior to the procedure, I was placed under sedation rather than general anesthesia. I was told that it would be a deep sleep like what happens during a colonoscopy and I wouldn't feel or remember anything.

I don't like being awake when they roll me back to a procedure room. I don't like being awake while they move me around into position. I don't like being awake while they hook me up to various machines. I don't like being awake when they are preparing the procedure site. I don't like being awake to hear the conversations in the room. (I'm really not interested to know which resident went to the Muny over the weekend.) I don't like being awake to feel pain during the procedure that brings me to tears. I don't like having a bandage wrap placed across my arms to keep them in a position that is uncomfortable. So in summary, I did not like today.

After the procedure, I woke up in my patient room and I was in a lot of pain. It took a couple of hours to get it under control. The resident explained that because of the location of the tumors, very close to the diaphragm, that I could expect more pain than "normal". Whatever normal is.

The calm before the crazy

On the way to Barnes this morning at way too early o'clock, I noticed how peaceful it all looked from the outside. As soon as you step inside though, Barnes is it's own whole busy, busy world.

What is cryoablation?

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