Can't find the on/off switch

With this extra week between treatments, I was sure expecting to be feeling noticably better than usual. But I'm just exhausted. And my brain won't turn off.

I got a letter from my health insurance company the other day that 2 of the drugs that I take regularly are no longer going to be covered in 2016. I'm assuming that a generic version or maybe a similar med will be covered but I don't know. Just something else to stress about until I get the chance to ask.

On Friday, I did find out that the preliminary results from last week's blood cultures were negative. So what was going on with me last Monday when I became a pool of sweat? My next scans, in 2 weeks, can't come soon enough!

CEA

Another reason that I'm not excited about a delay is because of the trend of my CEA results. (I was just able to access today's result.)

From the U.S. National Library of Medicine:
The CEA test measures the level of carcinoembryonic antigen (CEA) in the blood. CEA is a protein normally found in the tissue of a developing baby in the womb. The blood level of this protein disappears or becomes very low after birth. In adults, an abnormal level of CEA may be a sign of cancer.

Here are my results, notice the slightest upward trend over the last few months in gray.

It's hard to consider the South County results because my results there have always been "<1", but there is no further clarification of how much less than one. So if I was only looking at the South County results, I wouldn't be seeing any change. But I do have the West County results, since I have labs at both places, and I can see the upward trend.

It should be noted that even at it's highest, 2.8, my CEA level has never been outside what is considered normal. But it is the trend that is disheartening.

You want to do what to my what?

• Bloodwork and treatment and ultrasound at Siteman West County

When I left the clinic last night, the NP there told me that she believed my treatment would go on as scheduled today. So I got up and headed to Siteman this morning. My port is still out of commission until we get the blood culture results back, but the inside of my left elbow was the magic spot today to draw for my labs.

In the treatment room, the nurse placed a call into Dr. T's office to find out the plan for today. Aaaaaand the plan is to take the antibiotics for a week and delay my treatment until next Tuesday. While that sounds like a nice idea, it's scary because I haven't been feeling great and I'm scared that any break is going to allow any cancer cells that are hiding out somewhere to start growing again. I can't do anything about it now though. So I'll try my best to enjoy the week. Well... as soon as my shoulder and port stop hurting.

Dr. T's office also decided to order an ultrasound to check for blood clots around my port - based on my symptoms yesterday and the lack of external signs of a port infection even though I'm having pain there. Basically, maybe it's something other than an infection, so let's look around some more. So after lunch, I went to the hospital building for an ultrasound.

As the tech leads me back to the room, he confirms my name and birthday, and then says "so why are we taking a look at your thyroid today?" HUH. I calmly explained to the tech why I thought that I was there and he was quite confused. Many people came in and out of the room, calls were made, additional orders were faxed and then... finally there was an ultrasound of the blood vessels around my port. It turns out that the official name for my test was: Venous Doppler of Right Upper Extremity. The tech and the radiologist both confirmed that they did not see any blood clots. Another four hours at Barnes today, what a Tuesday.

The itchy and scratchy show

• Trip to the Cancer Care Clinic at Big Barnes

Today started off like a normal Monday... waking up slowly... wishing that it was still Saturday... driving into work... and getting settled in for the day. Mid-way through the morning though, I started to not feel that great, then came the chills and the all-over body sweats - thru my clothes. CLAMMY is an understatement.

I called into my oncologist's office and coupled with the fact that my right shoulder (the side of my port) has been bothering me for a few days, my NP scheduled me to go down to the Cancer Care Clinic at Big Barnes. "In and out for some blood work and blood cultures." Sounded okay by me. We wanted to rule out an infection and just check what's going on. Unfortunately, since the infection could be related to my port, we won't be able to access it today.

Oh dang.

Let the attempts to draw blood the old-fashioned way begin!

1. Inside of my left elbow - Missed! My veins are "slippery little boogers".
2. Back of my left hand - "Found a juicy one," but it seemed to collapse almost instantly.

**Time to call in IV Expert #1

3. Back of my right hand - A stick but no blood return. And this IV Expert is NOT interested in trying again.

**Time to call in IV Expert #2

4. Right forearm - Success! Well, kinda. There is no blood return, so we are probably on the wrong side of a valve. The good news is that we can use this stick for my IV though and my nurse starts some fluids.

5. Back of my left hand (again) - It's a tag-team effort, but my original nurse and IV Expert #2 are able to get a stick with a decent blood return for my labs.

While waiting for my lab results to come back, the NP at the clinic starts me on 2 antibiotics through my IV. Apparently they aren't compatible with each other, so I have to get them 1 at a time. My friend Brenda, who is also a NP, is sitting with me and tells me that I am getting the antibiotic heavy-hitters, to really go after an infection. The first one takes about 20 minutes and it finishes without problem. The second one gets about half-way finished and as I'm talking to Brenda, I start feeling really itchy, my scalp and forehead turn red and I've got a red stripe on my arm coming away from the IV spot.

Oh dang.

Add that one to my allergy list. Things cleared up in about 15 minutes... after we stopped that second antibiotic and added some Benadryl to my IV.

The good news is that my blood work looked normal (for me). The results of the blood cultures will take a couple days, so the clinic NP called two prescriptions for more antibiotics into my pharmacy and sent me on my way. Five hours at the clinic, what a Monday.

Drip

• Bloodwork and treatment at Siteman West County

Today's infusion is going sloooooow. Drip. Drip. The rate was just upped but I'm not sure why it was set so low to start.  Hmmmmmm. I've been here since 7:30 and I'm ready to get this party started. And by party, I mean work day.

$$

Yay for health insurance.

Unexpected

Out of the blue tonight someone unexpected told me how inspired they are by me. Time to take off these crabby pants and start acting like the positive, inspiration-worthy person I know I can be.

It reminded me of something I read on one of the blogs that I discovered the other day, the author, a stage IV colon cancer patient, wrote the following about chemo...

"Although not an easy thing to do – for many CRC patients, these chemo treatments can be very effective, allowing life to continue for years. Some patients have a lot of trouble with the side effects but most find ways to handle them. My good friend Marie has been treated by irinotecan-based chemo therapy for over 6 years! Life changes for you and your entire family – I personally know hundreds of people doing chemo – but Life goes on. Life is remarkably flexible and the patient and the family adjust to the “New Normal”. You do what you have to do." - Tom M


http://adventuresinlivingterminallyoptimistic.com/2015/10/27/its-a-marathon-not-a-sprint/

You do what you have to do.

 

Pasta con a loud unwanted opinion

Since we just moved into a new neighborhood, tonight we decided to try a nearby casual Italian restaurant. It had pretty good on-line reviews and it is just a few minutes away from us, so we were sold.

We waited about 20 minutes for our table, but there was a steady stream of people coming and going. Hector noted that everyone leaving was carrying a to-go box, a warning sign that the portions were most likely going to be huge. (And they were pretty big. Leftovers for tomorrow. #winning)

We got a cute booth against the wall but the tables in the center of the room came pretty close to us. Turns out, too close. Within a minute of sitting down, I hear a woman at the closest table say blah blah "cancer" blah blah. I can't even help it, when I hear that word, it just gets all my attention. It's like when you say "treat" to a dog or "outside?" It becomes all that they can focus on. Same thing.

So now I find myself listening to this woman tell her friends that when her Dad was diagnosed with cancer, he changed his diet and did all this stuff to increase his survival odds. Sounds good. But she feels like if Sue* ever got cancer, Sue would be testing fate, smoking cigarettes - as many as she could hold, and drinking booze, and shouting "3 months? Let's make it 1 month!" Oh boy. Then I listened to this woman say "if I ever got cancer, I would jump off a bridge." At this point, I'm pretty sure she can feel me staring directly at her with a presumably disgusted look on my face. She clears her throat and says to her friends, "well because I hate to feel nauseous."

It just hit a nerve with me. Maybe because here is a woman whose life has been directly affected by cancer (her father) and she still thought it was okay to joke that suicide would be the best option. Maybe it scared me to think about what she might have seen her father go through. Maybe I was just annoyed that she was talking so loudly about a subject that is so personal to me. Or maybe I should have been minding my own business.

I still enjoyed my butternut squash ravioli but the dinner left a bad taste in my mouth.


*Not the real name, it was clearly a woman that they had been talking about when the conversation caught my ear.

Reading

There's a lot to read out there. I found this article about a new type of treatment very interesting.

http://fightcolorectalcancer.org/research-treatment/currently-incurable-scientist/reprogramming-a-tumor-for-death/

And that article led me to the author's personal blog, another good read that I'll be checking in on regularly.

http://adventuresinlivingterminallyoptimistic.com/

Empty

• Bloodwork and treatment at Siteman West County

The best kind of treatment room is an empty treatment room.

My neutrophils were low again today. Shocking.