Two isn't always better than one

• CT, bloodwork and treatment at Siteman West County

My health insurance wouldn't approve a MRI for today (Dr. T suggested one to get a better look at my liver), so I had a CT of my chest, abdomen and pelvis this morning. The technician did run an extra view of my liver after the contrast was injected.

I called this afternoon to see if the preliminary results were available... and Dr. T called me back. Over the phone, my understanding was that the lesion that has been there all along was somehow appearing different and the radiologist was now suggesting that a MRI is warranted to get a better look at it. (And my health insurance now apparently agrees!) Since I'm leaving to go out of town tomorrow, my MRI is scheduled for the day after I get back.

***Update*** Later in the week though, when the final CT results are available on-line, I can see that the radiologist refers to two different spots on my liver, the one that has been there all along and now a new one. *sigh*

Patience

• Bloodwork and treatment at Siteman West County

My orders need to be updated due to last week's delay so we wait...

Hector treated me to Bread Co this morning so I'm enjoying that, and my warm blankets. #cinnamoncrunchbagel

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.

Sorry Tommy

• Bloodwork and treatment at Siteman West County

On cold and rainy Fall days like today, all I really want to do is stay in bed and hide under the covers. (But doesn't everybody?)

Instead, I was off to Siteman first thing this morning. My neutrophils were super low today, the lowest they have been since May when we reduced my Xeloda from 3,000 to 2,500/day. Dr. T's office approved treatment anyway but I got the usual spiel about being careful... avoid snotty children, wash my hands and call at the first sign of an infection. So don't be offended if I don't want to hold little Tommy this week. And I think I'll let Hector hand out the candy on Saturday night.

Only 6 more hours of work until I can crawl under those covers.

The unworried lesion

• Bloodwork, appointment with NP S and Dr. T and treatment at Siteman South County

NP S came in today and we talked about last week's CT. We talked about the "stable 7 mm low-attenuation lesion" in my liver that is mentioned in the CT report (as it has been for the past 2 CTs.) I wanted to get a better understanding of why exactly we aren't worried about it. We talked with NP S about it (and plenty of other things) and she left the room for a bit to discuss it with Dr. T. They both came back into the room to talk to us. But before they came back in, Dr. T had NP S (and NP A) pull up all of my scans and the corresponding reports since I was diagnosed and apparently you can see this same "lesion" on all of the CTs and MRIs, even when it isn't mentioned in the reports. The radiologists who read the scans have criteria that they use to determine whether they think it is a lesion or cyst or if they think it could be metastatic disease. And apparently all along, my 7 mm spot is passing the tests for just being a lesion. So we'll just keep watching it and as long as it remains unchanged, we remain unworried. Sure, unworried. We agreed that getting an MRI (to get a better look at it) is reasonable and on my next set of scans (in January), I will have an MRI of that area, along with my regular scheduled CTs. Seems okay by me.

During our conversations, I got a little teary-eyed with NP S and then again with them both. I find myself just so TIRED OF IT ALL. I know that they both see patients everyday in much worse conditions than me, so afterwards, I do feel a little stupid about it. But I AM allowed to feel... however I feel. I know, I know, I'm unbelievably thankful that it hasn't gotten worse at this point. And I'm thankful for all of the things that I continue to be able to do everyday. I am. Look at me. I'm working full-time, I'm traveling, I'm being active (I played soccer TONIGHT), I'm living my life. I think about family and friends who have lost loved ones to cancer. I think about my friend BAH (#thegreathencini) who was diagnosed with cancer (a different, far more aggressive kind) in November 2014 and then passed away 6 months later. I just need to get it out sometimes, scream it from mountain tops, or in this case, cry about it in front of my doctor. When it is just NP S, Hector and I in the room again, I tell NP S that I do feel better after this appointment. She reminds me that being there to answer questions and to talk through my concerns is one of the reasons that they are there.

One other thing that we talked about is my first year colonoscopy coming up due at the end of January. Since I will already be getting an extra week off from chemo during the beginning of January for an out-of-town vacation, they might extend it another week to give me a full month break before my colonoscopy. I will have to be off Avastin for 4 weeks before the procedure anyway, so if I do feel like I want/need an additional week, that would be the time. It's an idea that we all cautiously agree upon for now. Before that decision is finalized though, we'll have the results of more Guardant testing (blood was drawn for it today), the results of CEA testing done over the next 3 months and the results from my scans at the beginning of January. So we'll see what January brings.

Mutch

Hey, I know this guy!!

 

http://www.siteman.wustl.edu/ContentPage.aspx?id=8891

Scan me

• CT scan of my chest, abdomen and pelvis at Barnes West County Imaging Center

I'm not going to even bother beating around the bush. I spoke to my nurse this afternoon and the preliminary results of my CT from this morning do not note any changes. NED. The 7 mm "cyst", as they refer to it, in my liver remains unchanged. Full details will come with the final report and at my appointment with Dr. T on Tuesday. Hooraaaaayyy!! 

Cartwheels

I'm officially in full-on scanxiety mode tonight with a CT scheduled for tomorrow morning. It's been three months since my last one, the longest interval between scans since my diagnosis. Overall I haven't felt great, but the last 2 weeks have been better than average. I know I'm not invincible and I won't jinx myself but I am praying for continued good news.

When I popped on to Facebook tonight, I got a notification that I had a flashback from this day, 6 years ago. It was 5 days before my first date with Hector and there have many cartwheels since! And I'm hoping to be doing some more later this week. 

Unicorn

I, too, have felt like a unicorn in the treatment room. When the author talks about sharing her prom stories... I can relate to feeling that same way when I was sharing my wedding stories last year.

http://fightcolorectalcancer.org/community/the-unicorns-in-the-oncology-ward/

Breakfast of champions

How low can you go

• Bloodwork and treatment at Siteman West County

My blood pressure was just as low today as it was before I started all of this mess. (It had always been on the low side, but then it's been all over the place in the last year.) Anyway, that's a good thing. I suppose that I have been feeling pretty "at peace" lately, not overwhelmingly stressed. Maybe it was our weekend trip to Branson. Everything there was definitely moving at a sloooooow pace.

There was a woman in my pod today just starting her first treatment of FOLFOX. I felt like I should have shared a bunch of words of wisdom with her, other than, "hello, good morning." The more I thought about it while I was sitting there, the more her body language was telling me that she wasn't in the mood to talk today anyway. Hopefully our paths will cross again on another Tuesday though and I can be a source of... something.

I'll take a bottle of happy

• Appointment with Dr. S, gyn

So a freak out last week led to an appointment today with my gyn (after a conversation about it with my oncologist's NP first). Anyway, based on today's appointment, there is nothing new for me to worry about. At this point it's hard to keep a count of my freak outs, but I think this was number 56,387.

I have been reading up about girlie parts though and there is a heavy involvement of the lymphatic system there. And coupled with fact that I had an ovarian met, it's not unreasonable for me to have concern.

The best part of the appointment though was getting to talk to my gyn, who I haven't since last Fall when I was still basically at the beginning of all of this crap. The joy he expressed in seeing me and hearing about how I'm doing actually brought me to tears in his office. We shook hands, he gave me a hi-5 and he just made me smile. If I could bottle up how I was feeling when I left today's appointment and carry that around with me, I totally would. It was just an infectious confidence and happiness. Two things that can be hard for anyone to find.

More numbers

So yesterday a new drug was approved by the FDA for the treatment of metastatic (stage IV) colon cancer. So scary to me to see all of the excitement about a drug that increases overall survival by an average of 1.8 months.

I should be talking about decades and years, not months. Makes me want to scream and feel mad and frustrated. I haven't experienced that kind of emotion much during the last year, but that is how I'm starting today. I suppose I should be happy about all of the treatments available and the continued research and dedication of those involved, but it's just hard.

"In the RECOURSE study, the median overall survival (OS) for patients with mCRC who received TAS-102 was 7.1 months compared with 5.3 months with placebo (HR, 0.68; P <.0001). The median progression-free survival (PFS) in the TAS-102 arm was 2 months versus 1.7 months with placebo..."

http://www.onclive.com/web-exclusives/fda-approves-tas-102-for-advanced-colorectal-cancer?utm_source=Informz&utm_medium=OncLive&utm_campaign=Breaking_News_9-22-15

Fourteen/fourteenths

Anybody who knew me as child would not be surprised to see me working as an Accountant now. I was the kid who got excited about extra problems assigned to me as homework; and I had math competition medals alongside my sports trophies. Numbers came easily to me back then and they still do (for the most part.) So I have to laugh at myself when my mind turns everything into a math problem.

1 week of chemo pills at a time, 5 chemo pills a day, 35 chemo pills a week. With each dosage, I am 1/14th of the way through, 2/14ths of the way through (well 1/7th), etc. Then I hit the halfway point and I start counting down, 7 dosages left, 6 dosages left, etc. So this morning, the Tuesday at the end of a cycle, I have 0 dosages left and I am 14/14ths of the way through this cycle. As in 100% done with my chemo pills until next Tuesday evening. Making it into a math problem makes it comforting to me, in some sort of weird algebraic way.

Tomorrow represents 15 months since my diagnosis... half-way to the average survival time from diagnosis of 30-36 months. Hmmm. Sometimes, numbers are not my friend. Stupid math.

Warm blankets are good

• Bloodwork and treatment at Siteman West County

For the first time in awhile, I feel asleep in the treatment chair this morning. It's the warm blankets. Do I want one? Yes, please. Two? Oh sure, I'll have two. ZZZZZzzzzZZZzzz

It is such a beautiful day outside, that I had planned on rolling myself out to the patio and garden area... but the warm blankets had other plans.

Xeloda

http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx

Women

So our DVR cut off the ending of Project Runway tonight and I had to pop onto Twitter to see if I could find out who was sent home. I searched for @ProjectRunway and up came a big group of tweets about tonight's episode. Surprisingly (or not, if you watched the episode), almost all of the tweets had to do with the behavior of the women's team in the episode. I think this tweet sums it up the best:

The crazy thing is that I wanted to say the exact same thing earlier tonight after my women's soccer game. And well, to be honest, after just about every one of my women's soccer games lately. When did become okay to be a bully?

My emotions run high on Xeloda. I know this. Hector knows this. More often than not, extended use of Xeloda involves starting an anti-depressant. I'm just not ready for that. So I do my best to keep my emotions in check. Sometimes it works and well, sometimes it doesn't. Tonight at my soccer game, one of my opponents was threatening one of my teammates, taunting her that she "deserved it" when she was getting fouled. In my head I'm thinking, am I just sensitive to this because I'm emotional or have we all just started accepting that kind of behavior as okay? Don't even get me started on the "woman" last month that brought one of my teammates to tears by bullying her about her weight.

I've already made the executive decision that I'm not going to play in this particular league anymore because it's just not enjoyable, so what can I do in my last couple of weeks there to make a difference. Anything?

I realize that this post has very little to do with cancer, but yet it does. Life is short. For all of us. Nobody is going to live forever. And you will be remembered by how you treat people. After all, you deserve it.

Rinse and repeat

• Bloodwork and treatment at Siteman West County

My neutrophils were low this morning so they had to call and get approval for my treatment, but other than that, everything went smoothly today at Siteman.

It's okay to slow down sometimes

Saturday morning reading

http://mobile.nytimes.com/blogs/well/2015/08/27/living-with-cancer-collateral-damage/

Cancer card

My cancer card is probably going to be revoked soon due to lack of use. I don't park in handicap spaces. I don't jump to the front of the bathroom line (even when I really need to.) I don't claim the last brownie because "well, I've got cancer." And I don't play soccer from inside a plastic bubble.

So when I was getting shoved and kicked tonight, maybe I should have taken it as a compliment. I guess they looked at me and saw a soccer player. It didn't feel like a compliment though.

Working hard

• Bloodwork and treatment at Siteman West County

Good news! My blood test results are all back in their normal ranges. Well, except for my little neutrophils who still struggle to keep up.

I do have to remember that my body is working really hard. My liver, my gall bladder and all that stuff down there are working to rid my body of toxins. Getting that chemo through my system and out is hard work. And getting any stinking cancer cells out is hard work too. So they might be elevated and stressed from time to time.

It's all part of the process of learning my new normal.

That moment

You know that moment when you pull up your patient portal to check on the time for your next appointment and you notice that you have new test results. Hmm.

That moment when you see that one of the regular tests from Tuesday's blood work came up a little high and further testing was done.

That moment when you call the nurse to check on your missing appointment time (just a problem with the patient portal website) and you ask about the additional testing.

That moment when she says that they aren't concerned yet but it's something they are going to continue to monitor closely.

That moment when you pull up the test's historical data and you notice the upward trend. It's that moment when you feel like you can't feel anything.

My next round of bloodwork on the 18th can't come soon enough.

Busted can of biscuits

• Bloodwork, appointment with Dr. T and treatment at Siteman South County

We got the results of the Guardant liquid biopsy test today. They found ZERO mutations. They can run this test every three months though to see if there are any changes. More information can be found here: https://www.guardanthealth.com. I don't completely understand it all and we got the results after my appointment with Dr. T this morning, so I won't get to talk to him about it until my next scheduled appointment with him in October. My basic understanding is that the results aren't giving us anything new to work with... as far as future treatment options.

 

Dog-sitting is hard work

Not many better ways to celebrate the night before treatment than a nice dip in the pool after work.

Say cheese

• Bloodwork, appointment with Dr. T NP S and treatment at Siteman South County

This is apparently what I look like when I'm trying to take a picture of myself smiling during treatment. I'm not sure I could even try to recreate some of these faces.

We had a good conversation with NP S today, as Dr. T and NP A are both out-of-town. She assured me that the pain and swelling that I've been experiencing could very well be due to the Xeloda and it's cumulative efforts. So I'm going to start tracking it all even better, when it starts, how long it lasts, etc. to see if we can tie it back to the Xeloda. And of course it could be a million other things but my CT is clear, so that's the news we're going to focus on.

Hot mess

• Appointment at the Siteman Cancer Care Clinic at Big Barnes

If this is what my future holds for me, I'm going to need to add my doctor's office to my Friends & Family plan**.  I'm just not good at being sick. I've traded voicemails and calls a couple times with a couple nurses today and I'm just freaking out. My abdomen is swollen and I understand that my CT was clear, but something doesn't feel right. The pain in my side is like a 6 on the 1-10 scale. Aaaaand I'm supposed to go out of the country on Sunday. Help.

I get an afternoon appointment at the clinic and my sister Laura swings by my office to take me... but after some negative blood work to check for a possible infection, I'm headed back home.

** Don't be insulted if you aren't on it by the way, it's purely hypothetical.

Loopty loop

• CT scan at Barnes West County Hospital

I was really nervous for today's scan. It didn't help that after I got my port accessed and I was mere steps away from the machine... it went off-line. My options were to reschedule my scan (not an option) or go to the main hospital and get worked into their schedule. Another line, another hospital pager!

I made it back to work after the scan but I wasn't focused. My brain was in a never-ending loop of "scan results, scan results, consequences of scan results." I decided to take some of Teri's advice from yesterday and I placed a call through to my nurse... just to check... maybe they would have some preliminary results. And bingo! NED is still in town.

Cheesecake until you can cheesecake no more

Bloodwork and treatment at Siteman West County

It was a relatively smooth morning today. My bloodwork continues to look okay and the Avastin infusion was too quick for even a short nap. It's like when you fly to Chicago and there's hardly even time for peanuts.

I got to spend some time after work with one of my favorite people. My late-July CT has been moved to tomorrow to try and resolve the mysteries of my right-side pain and abdominal swelling, and Teri offered to meet up tonight to talk through some things. I'm so thankful for her friendship. She suggested that I try to make a gratitude list of things that I am thankful for. Something that could help get my mind in a better place. Her example of being thankful for what cancer has brought into her life was me. And she talked about how we otherwise would have never met. But she's thankful to know me, and to know Hector, and to have spent time with my friends at the bakery after the undy run, and to have developed a better friendship with the person who connected us... and it really got me thinking.

I'm going to work on that gratitude list tomorrow. Maybe during my CT! There's always time for peanuts while I'm getting a scan.

I believe

The late late show

What I am up late reading...

https://www.psychologytoday.com/articles/201503/the-new-cancer-survivors.

While I never experienced blood in my urine as a warning sign, there are a lot of other things in this article that I find relatable. I do worry about the mental health aspect a lot. It's hard to think of yourself as happy and lucky to be alive when some days are so terribly hard. It's definitely something that I continue to work on everyday.

Let's play ball!

Tonight we were at Busch Stadium for the Cardinals game, but we barely made it to the fourth inning! There were two separate rain/storm delays, totaling over 2.5 hours, and it all came at the end of a busy, busy weekend. It had been a good weekend though, full of friends and laughs.

When we were walking up the aisle to leave the game, it was between innings and an announcement came over the sound system. I'm not sure if it was a commercial for Siteman or some kind of public service announcement, but it basically started out as a multiple choice quiz that went something like this... "Which of the following statements are true?"

a. a healthy diet and a healthy weight will help to prevent colon cancer
b. 70% of colon cancer is curable
c. ............

And I just stopped listening. Sometimes, I just have to. I can't argue with the statistics, but it just makes me feel like I did something wrong, like this is all my fault. And at the end of my good weekend, I heard just enough to turn my smile upside-down.

Say it with kindness

Thought this was a good read...

http://cancerfactscentral.org/10-things-not-to-say-to-someone-with-cancer-and-what-to-say-instead/

Last night's surprise

 

Thank You

 

I love you all. Loved my surprise.

Was hard to believe my own eyes.

So blue?! So many kind faces.

Time for a few quick embraces.

 

Em, Tina, Heather, Karen, G,

Kel, She, Meg, Laura, Mia, me.

We played them tough. We didn’t lose.

We blinded them with Amy’s shoes.

 

Party room time. Plenty to eat.

Tramp brownies and pizza, no meat.

Group picture with a kangaroo,

But who is Karen talking to?

 

I love you all. Loved my surprise.

You’re there for my lows and my highs.

Awesome to be all together,

A night I’ll always remember.

 

                                          - DB

A flowery good day

Happy Cancerversary to me!

• Bloodwork and treatment at Siteman West County

Until you hear the words, you have cancer, you'll never understand how it will affect every aspect of your life... your family, your friends, your work, your play, your definition of a good day, your definition of a bad day... and what it'll mean to you when one year later you wake up to a day filled with treatment, work and soccer. It's a good day.

Canada: Day Seven

We got started early this morning and heading to the Old Montreal neighborhood. We toured the Notre Dame Basilica and walked along the lake/river of the old port area. After lunch at a cute place in the square, we headed towards the Olympic Stadium. Near the stadium is Montreal's Botanical Gardens so we decided to check that out. The guide says to take 2.5-3 hours walking around and on another day we really could have, it is a huge place and so beautiful. But today we had a game to get to.

Canada: Day Six

It was hard to wake up this morning! We slept through breakfast at the hotel and found a cute place down the block for brunch. Then we went to the Montreal Museum of Modern Art and it was really cool! It seemed like a place that Laura or David should be displaying some work. Since today is the last day of my week on Xeloda, I'm pretty tired, so we decided to watch the US soccer game in our room after dinner. We also watched the Saint Louis FC US Open Cup match on-line. The soccer-cation continues!

Canada: Day Four

These feet were made for walking and that's just what they'll do.

Today we climbed our way to the top of Parc Mont-Royal and we walked and walked and walked and... we turned in early and watched some other World Cup games from bed.

Canada: Day Three

Today is another take-it-easy travel day, a morning to sleep in late and an afternoon to watch the Colombia v. France game at the airport while we waited for our flight. And Colombia WON, which is crazy, but a fitting end to our slightly strange 48 hours in Winnipeg. Hector mentioned a couple of times that Winnipeg reminded him of Austin, TX, where the cool kids' slogan is Keep Austin Weird. I think people here are doing a good job of keeping Winnipeg weird. Just my opinion!

Now we're off to Montreal, still feeling okay and excited to visit another new city. Emily and Marietta have both helped us with ideas for our non-soccer-game days. Allez!

Canada: Day Two

What a great day! This morning we walked along the riverwalk in downtown Winnipeg. It was warm and sunny but a little breezy, so basically beautiful. At one point when we were crossing the street, there was honking and a friendly "heeeeey guuuuuys!" that turned out to be our friends Holly & Kristan, in town from Indianapolis for the games. (My friend Ames and his daughter Sarah also found us in the stadium later, gotta love seeing people in Canada(!) that live close to you, well, in Belleville, but that you haven't seen in probably 10 years.)

The stadium was great, the games were great, the people were great and the sun was HOT. Besides getting something in eye that made my eyes water for about four hours (messing up my face paint!) and then required a trip to the pharmacy after the game, it was perfection.

Canada: Day One

Today we're traveling from St. Louis to Winnipeg via Toronto. Toronto. Home of the hockey playing blue Maple Leafs. Hector told me that we're putting maple syrup on everything this trip. Pancakes. Maple syrup. Turkey sandwiches. Maple syrup. Tim Horton's donuts. Maple syrup. Soooo Toronto. If you look at a map, our trip isn't exactly a straight line to Winni from the Lou but it's the end point that is the most important part. Winnipeg. The home of tomorrow's US Women's National Team World Cup game against Sweden. Sweden. Home of blond ski bunnies and a decent soccer team coached by one Pia Sundhage. Pia. The former coach of the US Women's Team who, after watching their first game against Australia on Monday, decided to pick on my girl Carli Lloyd. Big mistake lady, Carli is coming for you. Carli. Strong midfielder who can score, can break up the other team's attack and who is basically a badass. In the parallel universe where I play for the National Team, I am Carli Lloyd.

Grammar? Who needs grammar. It's time to start parlez vous-ing some francais anyway.

Personal pharmacy

• Bloodwork, appointment with Dr. T and treatment at Siteman South County

It's been a few appointments since we've seen Dr. T and it was nice to see him today. He's so excited for us and our trip (and so am I). Dr. T loaded me up with antibiotics to take with me in case I catch something and with a letter to answer any questions about the personal pharmacy in my carry-on or about the portacath in my chest. Getting through security could be interesting!

They took an extra blood sample today for a liquid biopsie test. It's a relatively new test and Dr. T can't promise that he'll even know what to do with the results. BUT at this point, it's a free test as they build their database and it could be helpful. It could potentially show us if there are any tumor bits floating around in my blood, and if so, whether or not the pathology of the tumor bits matches the pathology of my original colon tumor. It takes a couple of weeks for the results, so... we will see!

We also scheduled my next CT for the end of July and I won't see Dr. T again until the week after that CT. (Assuming of course that nothing major changes with my health.) I'll still have bloodwork and Avastin infusions every other week but I won't have doctor appointments on those days. 

Rain rain go away

• St. Louis Relay for Life event, sponsored by the American Cancer Society

Tonight we attended the first ever St. Louis Relay for Life event. It was the combination of a number of smaller events held around the area in previous years. Let's just get it out there, it rained... A LOT. We tried our best to keep walking and to keep participating but eventually the event was shut down early, canceling the luminary ceremony and cutting the fundraising hours short. We donated to the raffle and signed up for a silent auction item... and the good part about a small crowd is that we actually won the big raffle item as well as the silent auction item that I wanted. Awesome!!?? I am now the proud owner of an autographed Abby Wambach picture and a brand new guitar. Yes, me of no rhythm, I have a brand new guitar. I thought I'd give it to my nephew but apparently he no longer plays guitar. I wonder how much lessons cost?

Wave your flag

• Bloodwork and treatment at Siteman West County

1942, 1961 and 1949. Those are the birth years of the other three people in my pod this morning. I don't know what kind of cancer brings each of these people here but once again I'm the baby.

My little neutrophils are throwing their white flags around again and we were this close to having treatment delayed today. The saving grace is that we're trying to stay on schedule and not interrupt that schedule when we travel next month, so we are going forward with treatment today. My Xeloda dose is going to be slightly reduced and I'm reminded to be SUPER careful about avoiding sick people and washing my hands, etc. The usual.

We've been here since 7:30 this morning but even as the first appointment of the day, it'll be 3+ hours before we're done. 

One day at a time

• Bloodwork, appointment with Dr. T and treatment at Siteman South County

I was hoping to see Dr. T today but instead it was two NPs again. The good news is that the scans look good. There is mention of a stable cyst in my liver but this is the first time that I've heard about it so they are going to have last week's test compared to my MRI from January. We were able to pull the March CT images up while we were talking and you can see that yes, it is the same size, or "stable", but there is no mention of it in that CT report. When I ask for clarification for how they know it is a cyst, NP A says it shows up differently on the scans. I'm not totally convinced. I mean, I trust her but really, it could be anything, right?

My bloodwork is okay, except my poor neutrophils are struggling again. While we aren't changing today's treatment, we will be keeping an eye on them and could possibly reduce my Xeloda dose in 2 weeks. They are low enough that again I am reminded to be careful being around anyone showing signs of being sick and to be extra careful about washing my hands, etc.

During my appointment at the counseling center yesterday, my new psych was asking me if I had ever had a talk with Dr. T about my prognosis for my particular case, ie: more than a generalized outcome based solely on my initial diagnosis. And the answer to that is NO. Well, it was, until today. It took me a while to get the question out and I started crying but NP A knew what I was asking. And yes, the average survival time for stage IV colon cancer is 2.5 to 3 years from diagnosis but I am currently not showing any signs of disease so it could be longer than that. Of course she can't predict the future or guarantee anything, but the fact that I am NED right now would lead her to believe that I could be above average. I'm summarizing here and using my words not hers exactly but basically that was it. So we keep moving forward, one day at a time.

There are worse ways to spend a Tuesday morning.

Testing the theory that everything is better with a gooey butter cake pastry.

Forget about it

• Appointment at the Counseling Center at Siteman West County

Today I met with a new psychologist. It was hard to have to kind of retell my story from the beginning. It's not that I want to forget about it all (maybe I do want to forget parts), sometimes it's just hard to verbalize it all again.

Things that make you go hmmm

Here is what I'm wondering. If the CT before my first surgery didn't show the tumor in my colon and the spot in my liver, what makes us think that we can believe the latest images? Adding this question to the growing list for my doctor's appointment on Tuesday.

Whiff

Played in a whiffleball fundraiser for 3 Little Birds 4 Life today. It got a little messy.

NED

I was able to access the notes about my CT on the patient portal this afternoon and I am still NED. Hip hop hooray!

 

Breathe

• CT scan at Siteman West County

The lady who checked me in this morning was super friendly. It was "beautiful girl" this and "hunny"" that and "darling" this... I think I was too tired to appreciate it but I was smiling. The scan itself was uneventful. I did have to laugh at myself though. For my previous CTs at this location, I've had the same male technician and I always laughed at how deep his voice sounded over the speaker "breathe... and hold it... and breathe". Well duh, it's a recording. Or else today's female technician has some explaining to do.

Love letter

Dear scanxiety,

I know you want to have another slumber party tonight but I'm tired. I would really like to get some sleep so that I can function better tomorrow. Emotions feel so much more raw when I'm tired and anxious. And I'd prefer to not cry in the bathroom again tomorrow. The scan will come and go in the morning and I will do my best to be at peace with the results.

I know that you might be "winning" as I lay here awake at 1 a.m. but don't take too much satisfaction in this victory. With each passing hour that we spend together, I am learning your tricks. Get me to worry about things out of my control. Okay fine, small win for you.
 

I'm going to turn you off though and now that we've had this little chat and I've said my piece, I'm going to peacefully drift off to sleep...

You'll have to read yourself a bedtime story. Di out.

Training kit

Magic to do

Today I had my first Xeloda/Avastin side effects, other than the fatigue that I've tried to manage by being active and some nausea that I've managed with meds. My gums are sore and there are a few cracks that are painful when eating/drinking. I've also really lost my voice, which happened last Fall when I was on Avastin.

So I called into Dr. T's office and after a couple brief conversations, the NP is recommending Magic Mouthwash. Magic Mouthwash? Apparently, it's a thing. Although when I go to the pharmacy to pick it up (and it isn't ready), the pharmacist looks a little stressed and tells me that it is a compound that she has to mix and I should come back in an hour.

The lidocaine completely numbs my tongue and I have to say, it's a weird feeling. I think the description below says it all.

Hands in the air like you just don't care

• Bloodwork and treatment at Siteman South County

Raise your hand if you are getting a chemo infusion during your lunch hour! Anybody? Somebody? Just me huh.

Can you hair me now?

I understand that sometimes it is hard to know what to say to somebody that is going through tough times. I understand that completely. I don’t expect that everyone I know has a good knowledge about cancer treatments; mostly because before last June, I definitely didn’t have a good understanding of the subject. But now I’m in it, waist deep in the middle of it.

All cancer patients are not created equally, just as all cancer treatments are not created equally. So when you ask why I haven’t lost my hair, I have compassion for your lack of understanding. But that doesn’t mean that it doesn’t hurt me. If you want to ask me about things I’ve lost, ask me about my loss of innocence, ask me about the loss of my ability to have my own children two months before my wedding, or ask me if I miss the 18 inches of my colon that were removed. How about my fallopian tubes? I kind of miss them too. Or how about the very reason that I’m on chemo, because I was diagnosed with stage IV colon cancer, a disease with 5 year survival rate around 10%? How about the possibility of the loss of my future?

My hair? Yeah it’s still up there, well most of it. I’ve lost about half of it if you’d really like to know. Do you ­­_really_ want to know? Do you want to know about the conversation that I needed to have with my hair stylist about the handful of hair that would come out every time she washed my hair? I didn’t think so. And yes, I’m really self-conscious about it, even if you think “it looks great”. My hair seems like such a silly thing to be so focused on. It didn’t physical hurt when it fell out. Recovering from multiple surgeries and dealing with chemotherapy side effects, those are the things that I’ve been dealing with on a daily basis.

Nobody can predict the future but all likelihood suggests that I’ll find myself on other chemotherapy drugs at some point. Included in those future options are some drugs that could cause me to lose all of my hair, amongst lots of other side effects that you would never discuss at a dinner table. Can you imagine how difficult that will be for me? How it will transform the image in the mirror? Can you understand that it will take away some of my freedom because I will want to stay home where it is safe?

Some people pay a lot of money to be hair-less…

 

Blankie

Control

I don't feel control over very many things so this is a good reminder. Amy may be talking about running and training but it still applies.

Jury duty

So I played a little soccer this morning. The jury is still out on how I'll feel tomorrow. My feet are a little sore but I've got them lathered in udderly smooth lotion and covered in moisturizing socks. It seems that determining the exact amount of Xeloda that will be effective yet not cause severe side effects is a little bit of a learning process. I know I'm not starting at the highest possible dosage for my height/weight but is it enough for things to stay quiet and is it an amount that my body can handle and process without major problems. The jury is still out.

I'll be okay

• Appointment with Dr. K at the Siteman Counseling Center

Today was my last appointment with Dr. K, who is leaving Barnes in a couple of weeks. I'm bummed because we had reached a comfort level that was allowing me to say what was on my mind, which isn't always pretty. But I'm going to be okay. I got some information about a free exercise class for cancer survivors that meets twice a week. I spoke to the woman in charge on the phone and I'm going to give it a try next week if I am feeling up to it.

Maintain

• Appointment with Dr. T and treatment

When we checked in for my appointment, the woman at the registration desk told us that Dr. T was about an hour and a half behind schedule. He's a busy dude. It was really no surprise that when we finally did get to a room, the NP came in instead to talk to us. Counts are too low to try for Oxaliplatin again so we're officially switching over to "maintenance". Xeloda (one week on/one week off) + Avastin. And scans in a month. I suppose I should be more excited than I am. Maybe after those scans and some time on "maintenance", if I can see that nothing is growing, maybe then I can be more excited.

All by myself

2 miles at the park this morning before treatment. And the first time going by myself. #swelfie

My own half-marathon

In the last week, I've walked/ran a total of 13.1 miles. A bunch of my friends ran the GO St. Louis half-marathon today. I'm equally proud of my "half-marathon".

A good Saturday morning

I love Saturday mornings when we wake up reallllllly early to watch soccer. In today's case, it was 5:45 a.m. We watch the pre-game, the first game starts around 6:45 and we have breakfast in bed at half-time (cinnamon rolls today). Then comes the best part, Hector falls back asleep as I watch the first game finish and start the next one. This is the best part because he's at peace and resting. This cancer stuff has been so hard on both of us, there are plenty of restless and sleepless nights, like last night for Hector. Sure it might be fun if he was awake and could have just seen that pk for Swansea by our boy JonJo. But I love the sight and sound of my sleeping husband. He'll move around and every once in awhile wake up and ask "what's the score" or "que paso". I'm pretty sure he doesn't even realize that it's already the second or third game of the morning.

Good morning

Who is ready for breakfast?!

Taking fanny for a walk

Me and my fanny

• Appointment with Dr. T and treatment at Siteman South County

As expected, today was a short day at the cancer center. I'm going home with my 5-FU fanny pack for the next two days and I had a 30 minute infusion of Avastin. I haven't had it since before my surgery since it can affect healing. We discussed it with Dr. T today and the research is really inconclusive. Short term studies seem to show effectiveness but longer studies of 3-4 years seem to show no difference.

We talked about the Undy Run and Dr. T thinks I should patent our team name and slogan, he really likes it. Kickin It - showing a red card to cancer. I don't disagree! Team Kickin It is pretty awesome.

Change is hard

• Appointment with Dr. K at the Siteman Counseling Center at BB

When I changed from Mercy to Siteman in December, it was hard. Changing to a new psychologist was hard. And finding out this afternoon that this new psychologist is leaving at the end of next month brought me to tears.

Taking it (s)low

• Bloodwork at Siteman West County

The results are in and my numbers are too low for FOLFOX tomorrow. I spoke with a nurse from Dr. T's office, we're keeping my appointment for tomorrow and I am going to have a reduced treatment. No oxaliplatin for sure.

Kickin It

I am awesome

Me and my I am awesome socks played soccer tonight for the first time since last June. It was awkward and slightly uncomfortable but worth it.

More waiting

• Bloodwork at Siteman West County

It's official, no treatment tomorrow. Another week of Neupogen shots to try and help my wbcs recover. Disappointed. Without these delays, tomorrow would have been FOLFOX #12. Instead, we wait another week to try for #11.

The moment before

Right after I was diagnosed with cancer last June, I heard all kinds of things. One of most memorable was during a visit with a friend of a friend who just happened to have done the Ironman in Hawaii the year after a very similar diagnosis. As in, she was training, for the Ironman, through her chemo and radiation treatments. Amazing. Anyway, we agreed to meet for the first time on a sunny July Sunday morning, one of us in a walking daze and the other still sweating from a morning bike ride. And go figure, the pastry place was closed. Nobody around here likes pastries on Sundays? So we just plopped ourselves down in their outside seating and started talking, like we'd known each other our whole lives. I shared things with her that I hadn't been able to share with anybody else yet. She said to me, "you can never go back to that moment right before you knew." It seemed all at once to be a simple statement of fact and very powerful. That moment right before I found out that I had stage IV colon cancer at 38 was the loss of my freedom from worry. Sure I had "problems" that I was worried about, I was getting married in two months, what color were the table cloths going to be? But now I had THE problem, the life-altering, future-changing problem of advanced cancer. And it sucked. Even in my most care free moments now, it's there. Just hanging out.

The crazy thing is that if I could go back to that time, just before, what would I even tell myself? Would I have done something differently? Gone to Paris the weekend before? Filled myself with Hacienda margaritas? Played soccer at the park with friends every day from dawn until dusk? Nothing can prepare you for that kind of moment or make you feel like you're ready. Nobody says to cancer, "bring it on!"

When I met with my psychologist last week, I was telling her that I was thinking about making a list of all of the not exactly appropriate questions that people have asked me recently and she was all for it. That is one of the reasons that there are SO many books out there written by cancer patients. You find yourself in all kinds of awkward situations and you can't help but want to share your stories. It also got me thinking about the meaningful messages, and about that moment before. For me, I'm trying my best to keep my brain focused on each moment going forward. (But it still sucks.)