Let it snow

• Bloodwork, appointment with NP A and treatment (Folfori #7 - includes Irinotecan #14 and 5-FU) at Siteman South County

The waiting room was quiet today as the oncologists were out of the office, but the treatment pods were all super busy due to the shortened holiday week. Sharon and David delivered lunch to me and Héctor and then I beat them all at Exploding Kittens.

 

New schedule, day eight

• Bloodwork and treatment (Folfori #6 - includes Irinotecan #13 and 5-FU) at Siteman West County

We’re going for a repeat of last week, minus the bone pain.

Depending on whether or not IV fluids are ever a part of your life, you may or may not know that Hurricane Maria’s destruction in Puerto Rico has led to a shortage of available IV bags and fluids. This article explains it well: https://mobile.nytimes.com/2017/10/23/health/puerto-rico-hurricane-maria-drug-shortage.html?referer=. This affects me because many of my chemotherapy drugs are supposed to be diluted with IV fluids before being administered to me. And not just me, thousands and thousands of patients every day.

Today marks chemo #60.

New schedule, day five

• Neupogen injection at Siteman West County

Within an hour or so of my injection this morning, I had bone pain in my lower back and hips that was spasming so bad I couldn’t get out of bed. Nurses say that Claritin helps with Neupogen bone pain so I tried that, but it didn’t help me in this case. Héctor had to come home and care for me, it left me feeling helpless and scared. I think this the first time we’ve had the Neupogen injections so close to treatment, so maybe that’s why it was so bad. All I know is that it was really scary for us both.

New schedule, day four

• Neupogen injection at Siteman West County

Today was a test day to see if it will be possible for me to have this same treatment next Monday and be able to travel (just a short road trip) next Thursday. If I had a magic 8 ball, I think the outcome would not look good.

New schedule, day three

• Neupogen injection at Siteman West County

I’m still really tired today and dealing with some nausea, which leads to not eating well, which cycles back to having no energy and being tired. #viciouscycle

I have a handful of half-written blog posts from the last few weeks but I can’t find the right attitude or strength to finish them. I’ve had a lot on my mind, my scan results, a lengthy appointment with Dr. T, surgery to replace my stent, the loss of my cat after 16 years, a last party to celebrate the marathon with my friends and family, the video production of a story about our marathon group, possibly writing something about the marathon in a more public space and I can’t even remember what else. Except pain, I’m having trouble forgetting that one. A new tumor in the capsule part of my liver (a part that has a lot of nerve endings) is causing a lot of pain. Stronger pain meds mean more time feeling groggy and that’s definitely been the case since we switched last Tuesday. More rambling perhaps, too?

New schedule, day two

• 5-FU pump disconnect appointment at Siteman West County

The new plan calls for more frequent chemo at lower doses, so the usual 46 hours of 5-FU and fanny pack fun is only 23 hours this week. Dr. T is hopeful that the lower doses will cause fewer side effects too... but I’ve slept the whole day. #fatigueisnojoke

New schedule, day one

• Bloodwork and treatment (Folfori #5 - includes Irinotecan #12 and 5-FU) at Siteman West County

While talking through the timing of tomorrow’s 5-FU pump disconnect appointment, nurse A and I realized that I have appointments every day this week and every day next week at Siteman West County. How’d I get so lucky? 🍀

LGB

All before noon

• Neupogen injection at Siteman West County and CT scan at Barnes West County Imaging Center

Window view

• Bloodwork and treatment (Irinotecan #11) at Siteman West County

Orange bits

• Neupogen injection at Siteman West County

See the nice orange plastic bits... Neupogen, not it's cousin Zarxio that causes me so much bone pain. (I'm not injecting myself in the leg here, I'm just holding the syringe to warm it up while my nurse takes my vitals and asks me the 100 questions they have to ask each time.) I bet that I could repeat them here by memory. "How are you feeling?" "How's your appetite?" "Bowels moving okay?" "Any falls since we saw you last (yesterday)?" "Any new numbness or tingling?" "Any pain that you acknowledge?" "Any mouth sores?" "Any fever?" "Drinking enough fluids?" "Any bone pain?" Hmm I am missing a couple, I'll pay closer attention tomorrow.

Napping

• Bloodwork and treatment (Irinotecan #10) at Siteman West County

Myth busted

Have you heard the story about a woman feeling and finding her colon cancer tumor during a wedding dress fitting? Apparently that woman is me? MYTH BUSTED. That story is FALSE. FALSE.

You can find the details surrounding my diagnosis if you go back to the beginning of my blog and June 2014. https://cartwheelscupcakescancer.blogspot.com/2014/06/ I only bring this up today because recently, and for the second time since my diagnosis, someone brought up that story to me. And all I could say was...

WHAT?!?!?!?!

I have never been able to feel any of my tumors, not my colon tumor, not my ovarian tumors, not my liver tumors, not my lung tumors and not my peritoneal cavity tumors. Any pain that I have ever felt has been from what those tumors have been doing to the tissues and organs surrounding them. The ovarian tumors (cancer that had already spread from my colon) started compressing my right ovary and that is the pain that I felt in June 2014 that sent me to the ER. I have felt pain but I have never EVER been able to actually feel any of my tumors.

Hopefully that brings an end to that myth. My only 2 dress fittings were in August 2014, two months AFTER my diagnosis, and absolutely nothing could be felt. MYTH BUSTED.

The truth is super important to me because awareness about colon cancer is something that I am now passionate about. My doctors believe that my cancer started growing 5-10 years before that ovarian tumor caused pain and sent me to the ER. If I had ever, EVER, felt any tumor or related pain before then, I would have been at the doctor that day, but that's the problem with colon cancer, by the time that it starts causing any symptoms, it is often very advanced. It is NOT like breast cancer, where feeling the tumor (a lump) is often the first sign. It is important to know your colon cancer risk factors and detection signs. Here's a good link to the American Cancer Society's information page: https://www.cancer.org/cancer/colon-rectal-cancer.html.

After my diagnosis and initial surgery, we jumped right into chemotherapy and tried to keep planning our wedding. It took many months for us to talk to friends and family in detail about what happened, perhaps that delay allowed for this myth and maybe others to develop. But how is it possible that almost three and a half years after my diagnosis, that this myth even exists?? I hope that if anyone reading this has any questions, that you will direct them to me rather than trust second or third hand information. The truth is super important to me and nobody has that about my cancer journey but me. Every detail about my wedding day was so perfect to me and having my dress fitting somehow connected to my cancer diagnosis is upsetting to me. I would hate for anyone to have that connection. MYTH BUSTED.

Wait for it

• Appointment with Dr. S at the Pain Management Center at Missouri Baptist Medical Center

I definitely jinxed myself by writing about how smoothly my last appointment went here. This one involved a lot of waiting, but that's okay. I got to see Dr. S, we're going to make an adjustment to one of medications, and I got to read through 4 or 5 old issues of People magazine.

Platelets

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

Two weeks ago I noticed in my bloodwork results that my platelet count was higher than usual. I looked back through my history and I noticed that my platelet counts had only been that high right after surgeries and radiation procedures. I thought this was interesting but figured the higher count was probably due to my pneumonia. So I was really surprised when Dr. T popped into the room today to tell me that my platelet count was too LOW for treatment for today. TOO LOW. And it's actually the big change from high to low in just two weeks' time that he is concerned about, so we need to delay treatment for a week and recheck my platelet count next week before I can have chemo.

Hector and I shared our Chicago marathon stories with Dr. T, NP A, K and some of his other staff
and they were so happy for us. We've been talking about the marathon for almost a year now and they have been so supportive.

Although disappointed about another delay in treatment, I left the office feeling pretty good. We have my next few weeks scheduled out, including my next CT scan, and I have a lot of positive energy in my life right now. So I was really bummed this afternoon to see that my CEA tumor marker test result has risen again today. If this chemo is working, my CEA should be going down...

Don't poke a sleeping owl

It's taken a week of sleeping about 18-20 hours/day, but I'm finally feeling better after being sick, developing pneumonia, traveling and having chemo in just a few days' time. I was a little worn out.

Good to go

• Treatment (Irinotecan #9) at Siteman West County

Clear

• Bloodwork and chest xray at Siteman West County

The decision to go to Chicago on Friday afternoon was a tough one, but I had a good conversation with Dr. T’s office that morning and I agreed to be back today for a repeat chest xray and bloodwork. Aaaaand today’s chest xray is all clear (no signs of pneumonia.) It was a warm October weekend in Chicago so that helped, cold air would have kept me in the hotel. And I rested when I needed to. I’m not sure I’m able to capture into words what the weekend meant to me, but I might try at some point down the road.

The world's longest blog post

The Chicago marathon is Sunday. It is a dream of mine to run it. That's how this all got started. How it will end? I don't know that answer, but I do know that 14 of my friends have spent their summers training to run and fundraising over $21,000 for the American Cancer Society. Twenty. One. Thousand. Dollars.

As this event approaches, I've wondered how I could possibly express to my friends and their families and friends, who have had to work around long training runs and tired legs and who have donated time and dollars to the cause, how much it has meant to me. A speech when we're all together in Chicago? That'll never happen. Have you heard about how many Kleenex have been packed for the weekend? So here is my speech, in long-winded written form.

What the Chicago marathon means to me, by Diane L. Burns

In 2015, Hector and I volunteered at the Chicago marathon. My friend Chris has volunteered for years, she was always looking for more help and it was a good excuse to visit. We did our shift, had breakfast with friends, and then headed back to the course to try and find my friend Di who was running. You might not be surprised to learn how hard it is to find one person among 45,000 runners and millions of spectators. Finally at our fourth attempt, somewhere around mile 25, after we had recruited strangers around us to look for our friend Di who was wearing Texas orange, we saw her. Hector captured the best hug ever in one of my favorite pictures. And then our new friends around us said "she was really wearing more black than orange." May-be friends, may-be.

Fast forward to Fall 2016 when Di came to hang out with me at Siteman during chemo one day. We talked about how I had signed up run the Chicago marathon on a whim but it just wasn't going to happen that year. End of conversation, right? Wrong. After Di left, she got on the bat phone and called around to our friends. I have heard how many of the conversations went. "Dude, let's run the Chicago marathon with Burns next year." Silence. Laughter. Some were in. Some took convincing. And some said thank you, I love you, I would love to support you, but no. The yeses signed up for the lottery to get entry for 2017, still with the knowledge that only around 60% of applicants win entry into the race. Our acceptance rate? 100%. It was on.

That brings us to 2017. Hector and I took advantage of unusually warm winter days with walks outside, slowly building up to running/walking. We knew the official marathon training didn't have to start for a few months, but we were building our marathon running base. Good plan. My cancer had a different plan. First up was a surgery to place a stent and then came an upgrade to a heavier chemotherapy. For a couple months, there was no running, no running/walking and no walking outside of necessity. Thankfully a second surgery brought some relief to the stent pain but the new chemotherapy really had me beat. I lost 20 pounds in 2 months. As my friends all started their marathon training, I knew I'd have to take on a new role, team support, manager of orange slices and juice boxes.

I took my new role seriously. I started accumulating running must-haves (in multiples of 15) to create gift boxes for my teammates. I hoped a gift box would be a real spirit lifter as they advanced in their training. I cannot even begin to tell you how much joy it brought to me to find items to include. I got some items donated and others at discount, everyone that I talked to was always willing to help. And the day that Hector and I spent driving around St. Louis making deliveries to my friends was one of my best days of 2017. To say that the Chicago marathon has brought us all closer is an understatement. And the actual marathon hasn't even happened yet! At the beginning, I created a private group for us on Facebook, a place to talk about training. It has turned in to so much more, it is a source of constant support. We all have heavy things in our lives that sometimes make the day to day hard, where would we be without our friends?

The running fairy

No time for Grant's Farm

Now here we are, days away from the marathon. It makes me think back to my second favorite Chicago marathon memory, that comes from volunteering in 2015. Hector and I had to wear these orange bibs that said "Questions? Ask me." We were across the street from Grant Park at a big intersection where runners were flowing in by the thousands. We probably saw half of the runners as they entered the park and headed to their corrals. We got a lot of good questions and a lot of... other questions. "What are the winning lottery numbers?" Really? Come up with something original. A cop positioned at our corner with us asked me, "where's my coffee?" We met people from all over the world and when English and Spanish wouldn't work, we used the universal language of hand gesturing. It was a pretty incredible experience. The last question I got came from a younger man in a hurry to get into the park who asked "what do I need to run to win?" I gave him a look and shouted "hmmm about 2 hours 9 minutes!" Dickson Chumba's winning time that year, 2:09:25. I wonder what happened to my friend?

So ask me, what do I know now? I know I won't win. I know I won't finish. I'd hoped to line-up with my friends and start the race with them. I'd been planning to do about a mile and then wish them well and send them on their way. But here's the thing with cancer, it has it's own plans. After chemo last week I got sick and this week I've developed pneumonia. I've started antibiotics and there's a chance I'll feel well enough to go... and there's a chance that I won't. Either way, I know that my friends are going to rock it on Sunday. They have done their best to prepare and they are ready. My advice? Enjoy the heck out of it for me. Stop and give your friends and family a hug when they find you out on the course. Do a cheers with a stranger at a water station. Tell a runner you pass that they are amazing and strong, that you love their shirt/hat/cape/socks. Take a moment at mile four (my favorite number since I was a kid) to show the spectators your best dance move. Thank the volunteers. Be sure to ask one a good question that they'll remember. Run the best you can on Sunday and don't worry about the time on your watch. Practice patience at the beginning, it's just one really long Sunday morning outdoor soccer game playing midfield. Look for other members of American Cancer Society's Team Determination and give them a thumbs up. Create so many memories. I'll be there in your head if you need to talk to me. It goes without saying that you have already succeeded.

Kitchen sink

• Bloodwork, IV fluids, IV Zofran, blood draws for cultures, urinalysis, chest x-ray and Neupogen injection at Siteman West County

The plan for today was 1. to try and make me feel a little better and 2. to run some tests to see if we can figure out why I'm sick (if there is a reason other than my immunosuppressed system). The good news is that yesterday's Neupogen injection boosted my ANC way up so we're going to hold off on more injections until maybe Friday. I like to look at that news from the perspective that I won't have to worry about getting up and going to Siteman for the next couple of mornings. More rest at home in pajamas sounds good.

Hooray for neutrophils

• Bloodwork and treatment (Irinotecan #8) at Siteman West County

Buzz

From the end of July to the beginning of September, I had six weeks between chemo treatments and my hair started to grow back in a little bit. I had a buzz cut look going on and I even went out of the house without it covered up a few times... but thanks to my latest chemo treatment, my tiny little buzz cut hairs are falling out. I'm on my way back to being a beautiful bald, but I might get more wear out of my wig once the weather cools off a little bit more. That thing is hot.

Buzzed at the US Open

Is there a Zarxio video?

• Neupogen Zarxio injection at the Cancer Care Clinic in Big Barnes

Last week I posted a video about Neupogen. I've had hundreds of Neupogen injections over the last 3+ years but trying to explain how it works isn't easy (without a medical degree.) I do have the Neupogen routine down though. The injections have to be stored in a refrigerator, so the routine is that my nurse will ask me to the hold the injection in my hand (it comes in a pre-filled syringe) to warm it up once she removes it from the fridge. Studies have shown that it is less painful if it is warmed up before it is given. Out of habit, I always look at it, I look at the dosage (there are 2 different pre-filled amounts available) and I have grown accustomed to the look of the packaging (most of the plastic is clear but there is one piece that is tinted orange.)

Long story to say that yesterday when I was handed the syringe, I noticed that there was no orange piece and upon closer look, the brand listed was not Neupogen but Zarxio. Zarxio? What the heck is Zarxio?

It turns out that Zarxio is a substitute for Neupogen. It is not a generic brand but rather a biosimilar product. Huh? It was just approved for use in 2015. It made me wonder, have I ever had it before? Did I have it the other times when I had injections on the weekends at the Cancer Care Clinic? I can't be sure. I've had a lot of bone pain in my hips and back since yesterday's injection and I've never experienced this level of pain from Neupogen injections. One of the first questions I'm going to ask at my appointment on Tuesday is, "have I had Zarxio before?" I'm not sure I want it again.

Zarxio is the first biosimilar product to ever be approved for use in the US. I have spent a lot of time reading about it in the last twenty-four hours. This article is interesting: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm436648.htm. Here's a little snippet from it that implies that Dr. T would had to have been notified about the substitution:

"Zarxio has been approved as biosimilar, not as an interchangeable product. Under the BPCI Act, a biological product that has been approved as an “interchangeable” may be substituted for the reference product without the intervention of the health care provider who prescribed the reference product."

Hello to Russia, where my blog is suddenly getting lots of love

Приветствую нового читателя в России. Добро пожаловать!

video

• Neupogen injection at Siteman West County

This link is to the manufacturer's website and the page does have a lot of medical mumbo-jumbo, but there is an interesting video that tries to explain how Neupogen works.

http://www.neupogen.com/about/#how-does-neupogen-work

Not today

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

I talked to Dr. T on Friday about my CT scan and he described it as stable. He told me that some of the tumors in my lungs had grown a few millimeters and some in my liver had gotten a little smaller or remained unchanged. Dr. T said that there was nothing in the scan that changes our current plan of treatment. Hector and I took it as good news, especially considering that I have only had a few rounds of chemo since my previous CT scan in June. It's been hard to stay on schedule with my body taking it's sweet time to recover after each treatment. I might have mentioned that once or twice.

So rinse and repeat. My ANC this morning was 0.5 (even after a week of Neupogen injections). We'll give my body another week to recover. We'll have another week of Neupogen injections. And we'll try again for chemo next Tuesday. We did meet with NP A today and we went over the details of the CT scan, there are a couple other spots that increased in size... in addition to the lung tumors. If I had read the scan report before I talked to Dr. T, I'm not sure that I would have described it as stable. And unfortunately the mass near my left kidney that led to me getting a stent... is unchanged in size. That's a bummer. 

Ho hum

• CT scan of my chest, abdomen and pelvis at Barnes West County Hospital and Neupogen injection at Siteman West County

1.09

• Bloodwork, appointment with Dr. T and treatment (Irinotecan #7) at Siteman South County

Finally... enough neutrophils for treatment. Barely.

Another Dr. S

• Appointment with Dr. S (anesthesiologist) at the Pain Management Center at Missouri Baptist Medical Center

My appointment went really smoothly this morning, from check-in to vitals to medical history to exam to meeting with Dr. S. We're going to try and resolve my neuropathy (left-sided numbness and pain in my hand and foot) with a medication and meet again in a month.

I liked Dr. S but in discussing my appointment with a friend afterward I realized that I wasn't sure what kind of physician he is, so I popped onto his information page for the hospital and found this information about his clinical interests:

"Cancer-related pain syndromes, neuropathic pain disorders, musculoskeletal pain of the back, neck and joints. Spinal stenosis, sciatica, post-operative pain and complex regional pain syndrome."

I'm not sure that I knew there were cancer-related pain syndromes. I guess I'm seeing the right guy.

Bone marrow

• Bloodwork, bone marrow exam and Neupogen injection at Siteman West County

That's an interesting looking contraption. And those needles don't look like any fun. I think I will take the medicines you are offering to make me more comfortable.

http://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/basics/why-its-done/prc-20020282

Full time gig

• Bloodwork at Siteman West County

There's an on-line patient portal that I can access on my phone where I can view test results, e-mail my physicians, see appointment times, etc.

If that picture doesn't explain why sometimes this cancer stuff is all I can talk about... I don't know what to tell you. 11 appointments in the next two weeks. Who has time to think about anything else?

Frustration

• Bloodwork and treatment at Siteman West County

I can't repeat here what I said when I saw my lab results this morning and my ANC was again too low for treatment, having fallen back down from last week's normal result. How. What. It makes zero sense. It can't be. But it is.

No news is good news ?

• Bloodwork and appointment with Dr. S (hematologist) in the CAM building at Big Barnes

I feel like I did learn a few new things today and it's always good to get a better understanding of things... however Dr. S does not have a magical solution for my neutropenia (low neutrophil counts.) She did rule out a number of things, having gone through my medical history very thoroughly, but she feels confident that it is chemo-induced neutropenia. Dr. S mentioned that lowering my irinotecan dosage or removing the 5-FU from my protocol could help to keep us on a more regular chemotherapy schedule, but that's really something that she'll need to discuss with Dr. T.

The good news is that my absolute neutrophil count is back in the normal range this week and if I hadn't had surgery on Wednesday, we would have been able to have treatment.

True story

Replacement

• Outpatient surgery at Big Barnes to replace the stent in my left ureter with Dr. D

My stent has to be replaced every 3-4 months and today was replacement day. There was a slight chance it could just be removed (and not replaced) but Dr. D wants to see another set of scans before the next surgery and then possibly remove it, in 4 months. Boo hiss. The stent really limits my physical activity and that can be frustrating since being active (even just walking) is definitely my best stress reliever, but all I need to do is remember the discomfort that I was in before they placed the stent. Hmm. I love you new stent, I guess you can hang around for a little while.

Flood the world

• Therapist appointment with Dr. M

Today Dr. M talked to me about being too hard on myself. It's true. She actually read me a children's book called Zen Shorts. There were 3 short life lesson kind of stories in the book but my favorite part is the author's story about the name he chose for the panda in the book, Stillwater. The author explains that the name was chosen as a reminder that only when you are looking at your reflection in still water... can you see yourself clearly.

Lemon-aid

Today a couple of my friends and their kids (and their neighbors) had a lemonade stand to raise money for the American Cancer Society as part of our fundraising for the Chicago marathon. Lately I've been getting a little emotionally overwhelmed when I hear my friends talking about their long training runs and their fundraising efforts... and today hit me pretty hard (in a good way.) So many people making so many things happen to support me and my cause. You probably can't read the post-it on my shoulder that I got from one of their kids, but it says You Rock Di :).

Feeling low

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

My neutrophil count is too low for treatment today, even after a week of Neupogen injections. Crap. Dr. T's office is going to set me up with appointments to see a couple of specialists... a hematologist about my low neutrophil count and a neurologist about the neuropathy. Some good news is that my brain MRI looks good and does not show any signs of cancer having spread there. And also in the good news category, my CEA tumor marker test result from today is actually back in the NORMAL range (barely).

Watch where you walk

 

Woof

• Neupogen injection at Siteman West County

I've had Neupogen injections every day this week, and with them all scheduled near 10 a.m. (the magical pet therapy hour)... I've gotten a lot of furry love.

Spinning spinning in the spinning pool

• MRI of my brain at Barnes West County Hospital

We're trying to figure out why I'm having constant neuropathy (numbness, tingling and pain) on my left side, in my foot and ankle and in my hand and forearm. I can't sit still, I can't sleep. There has to be a reason... right? (The chemotherapy that I am on right now is not known to cause neuropathy.) I called and discussed it with Dr. T's office and they ordered a brain MRI.

I have had a brain MRI before, actually two I think. Anyway, I'm not sure if it is a particular cycle of sounds during a brain MRI or if it is just because the brain is the target, but it makes me feel like I am spinning. I spend the scan time literally trying to convince my brain that I am not spinning in circles. "Listen brain, feel that table beneath you, not spinning. Feel the side of the tube pressed up against your elbow, not spinning." It doesn't work. The spinning makes me nauseous and makes me feel out of control. Thankfully this MRI only lasted about 20 minutes. 20 minutes of spinning. Go outside and try that! =)

Disconnected

• 5-FU pump disconnect at Siteman West County

Buh-bye fanny pack, see you in 2 weeks.

Early this year we put a deposit down to join a vacation that Hector's family had planned and right now... we should be packing for Scotland, Ireland and England. It's a difficult tour agenda for a healthy person, with long days, lots of travel by bus, train and boat, and with set meal locations and menus. It would have been challenging for me. We made the decision a couple of months ago that it wasn't going to happen for the two of us. So for now, I'll be living vicariously through his family's pictures, but it still makes me sad to think about missing out on all of the beautiful places they'll be visiting.

Chemo day

• Bloodwork and treatment (Folfori #4 - includes Irinotecan #6 and 5-FU) at Siteman West County

Apparently my body finally got the recovery (and the Neupogen) that it needed. Hooray!

Call Me Crazy

During this extended break from chemo, I have been trying to fill my days and nights. Nothing too crazy until maybe today. It was my womens outdoor soccer team's last spring game. 7 versus 7, small field, last game, results don't mean anything, relaxed opponent. I had paid $65 to play this spring and I hadn't played one minute of one game, I hadn't even made it out to watch a game. I wore my Survivor buff to protect my head and I think the other team gave me plenty of space, but it was nice to kick it around a little, maybe 25 minutes. I had a decent assist, so there's that. Who knows when I'll get a chance like that again, had to just go for it.

 
When I first saw the pictures that Hector took, my initial thoughts were all about my weight being down, even though I am in the healthy BMI range for my height. But yet I am still 15 pounds over the imaginary perfect weight that I carried around in my brain during my 20s and 30s. How wrong I was.

how low can you go

• Bloodwork and Neupogen injection at Siteman West County

My ANC is DOWN from Tuesday. DOWN. Has anyone seen my neutrophils? #missing

We're almost 4 weeks out from my last chemo and my bone marrow is just not recovering. So. It was back to Siteman this afternoon for a Neupogen injection.

best laid plans part two

• Bloodwork and treatment at Siteman West County

It's a no-go for treatment today. Today's ANC was again too low for treatment so we'll recheck my labs on Friday and shoot for treatment again next Tuesday. It is both frustrating and discouraging. I fear that the good scan results (tumor shrinkage) from the last 10 difficult weeks of Irinotecan/Folfori treatments will be reversed with just these 2 weeks off chemo.

G'day mate

Today has been a really good day. While having an extra week off chemo isn't ideal, it has given my body a chance to recover. My energy level has been up (a little bit) and the nausea/vomiting/etc side effects from chemo have subsided more than usual.

This morning Hector and I went out for a run/walk before it got too hot. There was nothing speedy about this run/walk combination (2.25 miles in 40 minutes) but considering that it's been two months since I've tried to run at all, I'll take it.

Then we got a chance to meet friends for lunch at a new location of one of our favorite restaurants. Thank you Mission Taco for having us, we loved our tacos, burritos, margaritas, chips, salsa, service, the atmosphere, the wall mural... we loved it. Welcome to Saint Charles.

And of course it's not really a complete day for us without some kind of soccer. We have season tickets for Saint Louis FC and haven't made a lot of games, but tonight was the perfect night to be able to attend. The supporters group for the team did a fundraiser for the Colon Cancer Alliance tonight. (Hello, meant to be!) And not only that, but we got raffle tickets when we made a donation and won a team flag signed by the entire team, a perfect addition to our soccer-cave in the basement. And then the team, which has been struggling, beat the number one team in our conference 1-0. Wow.

I might have fallen asleep on the way home, but what a good day. The hard days might outnumber the good days right now, but today was a good and powerful day for my mind, body and soul.

best laid plans

• Bloodwork, appointment with Dr. T NP A and treatment Neupogen injection at Siteman South County

Today didn't go as planned. My absolute neutrophil count (ANC) was too low for treatment. Different medical definitions provide different numbers for what is normal, but here is what I have learned when it comes to absolute neutrophil count numbers and me.

> 1.5 is normal for most people
> 1.0 is normal for me and high enough for me to get treatment
< 1.0 is safe but too low for me to get treatment
< 0.5 is not considered safe and activities are restricted to avoid an infection

The only time that mine has been less than 0.5 was when I had chicken pox and they put me in the hospital. Today my ANC was 0.5. That's not great news, but as I was looking around on-line to try and define a normal ANC, I found the below article... and I quote "because neutrophils are short-lived, the body produces about 100 billion of these cells everyday." 100 billion. Everyday. So I think I'm going to cut my bone marrow a little slack and take this extra week off chemo to recover... and to make 700 billion more neutrophils. No big deal.

https://www.cancercare.org/publications/216-neutropenia_and_infections_what_you_need_to_know

30 hours in Chicago

I'm so glad that we were able to travel to Chicago this weekend. We had an amazing Saturday evening out on Lake Michigan celebrating our friends' anniversary. (I was super worried my new wig might fly off in the windy city. It didn't.) And after a walk around Millennium Park this morning, we spent today with my brother having a yummy brunch outside, spending some more time on a boat and eating ice cream in a friend's backyard. Couldn't have been a nicer weekend.

 

Fill 'er up

• Neupogen injection and IV fluids at Siteman West County

This blog is feeling a little clunky. I've been trying to record all of my cancer related appointments here, to demonstrate just how much stuff there is to do to make it through all of this, but for me that has it feeling more like an appointment log rather than a journal. (That sentence is pretty clunky.) Having a space to clear my head by rounding up the words in my head and putting them on paper (so to speak) is really why I started blogging in the first place. So I'm going to try and get back to that, perhaps losing the chronicling of every single appointment, but hopefully gaining something else.

With all of that being said, today was my third (and last) Neupogen injection for the week and I also received some IV fluids to treat dehydration. It's hard to get enough water down when I'm feeling nauseous and I'm actually surprised that this is the first time so far on this new chemo that they've suggested IV fluids.

ZzzzZzzzzz

Good news

• Bloodwork, appointment with Dr. T NP A and treatment (Folfori #3 - includes Irinotecan #5 and 5-FU) at Siteman South County

The news about yesterday's CT scan is good. The report is a big long detailed thing but the summary is pretty easy to process: things are shrinking. This is a good sign and puts me in the 20% of people who see some shrinkage on this chemo. So we keep going. Maybe this chemo will help to shrink the tumors so that maintenance chemo could be an option again. Or maybe this chemo will continue to be our best option at keeping the cancer at bay. Either way, it's easier to sit here today with some good news. And we even got up and sat in the kitchen area to eat some lunch.

Okay

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

I always have a hard time mentally when I'm prepared for one thing and there's a last minute change of plans. My insurance wouldn't approve an MRI this close to my last one and it was the check-in nurse at the Imaging Center who told me and instructed me to call my doctor's office. "But I'm already here............."

It'll be okay. So instead I'll have a full CT, more radiation than we wanted to have, but hopefully we'll get a good idea of what is going on.

• Neupogen injection at the Cancer Care Clinic at Big Barnes

People who brunch

• Neupogen injection at the Cancer Care Clinic at Big Barnes

We started the morning by meeting some friends for a charity 1 mile walk at Forest Park. The weather was nice and it was good to be there supporting friends. Afterwards, we popped into Barnes for my injection. And then out of nowhere, I wanted to eat out... like at an actual restaurant. I can't even remember the last time that eating out sounded like a good plan. My appetite is all over the place and my taste buds haven't been working normally (thanks new chemo) for a couple of months now, so pretty much nothing ever sounds or tastes good. But we went and it was good. And then there was napping.

3 years

• Neupogen injection at Siteman West County

I'm back

• Bloodwork at Siteman West County

Dr. T's office asked me to come back in but after testing it turns out that my liver related blood test results look okay today, actually down from last Tuesday.

• Neupogen injection at Siteman West County

• Neupogen injection and urinalysis at Siteman West County

#51

• Bloodwork, appointment with Dr. T and treatment (Folfori #2 - includes Irinotecan and 5-FU) at Siteman South County

Party time

• Neupogen injection at the Cancer Care Clinic at Big Barnes

I felt well enough this afternoon to go watch a soccer game and then stop by a 40th birthday party. I was pretty worn out by the end of the day, but it was a good day.

• Neupogen injection at the Cancer Care Clinic at Big Barnes

Fingers crossed

• Outpatient surgery at Big Barnes to replace the stent in my left ureter (with a shorter one) with Dr. D not Dr. D

Everything seemed to go well with my stent replacement surgery today.

Dr. D came by to talk to us beforehand and she marked the left side (no need for confusion in the operating room) of my abdomen (near my belly button, this picture is PG people.) She even gave the marker to Hector as a souvenir. A surgical skin marker. Interesting. That's a YES, along with her initials. Although for a stent replacement, it should be clear which side has the stent? Anyway...

My actual procedure ended up being performed by one of her partners after Dr. D got called away on an emergency case. When she came by to talk to us in recovery, Dr. D said that she had "really wanted to do (my) surgery." Not to worry, I'll be back in 3 months for another replacement. She'll be looking at my scans and during the next surgery they will even perform some kind of additional test to see if the stent is still required. It would be great if my current chemo is shrinking that tumor and the stent could just be removed... not replaced. I'll be having scans in the next couple of weeks so we'll get our first look at what the chemo has been able to do...

There were no cartwheels today but on our way home from the hospital we did make one pit stop.

• Neupogen injection at Siteman West County

Indwelling

• Neupogen injection at Siteman West County

I learned a new word today.

I get an e-mail notification every time there is new information added to my on-line patient portal and today's information was a new condition added to my profile: "infection associated with indwelling ureteral stent." Indwell. A new Scrabble word.

Statistics

• Bloodwork and Neupogen injection at Siteman West County

Some new statistics recently released about colon cancer by the National Cancer Institute:

I was diagnosed at 38.

 I was diagnosed at stage IV (distant.)

Stir crazy

I really needed to get out of the house today... and out of the backyard... basically I really needed to get outside of the boundaries of our property. Stent be damned, I was determined to take a walk at the park, so I made it the slowest walk ever recorded. 1 mile in 21 minutes and 31 seconds. By the end of the walk, I was slightly uncomfortable but mission accomplished as far as getting a little sunshine on my face and getting to move my legs a little bit.

 

The funny thing is that when I looked at the data from my watch when I got home, it showed that my moving time during the first half-mile was 0. Was I actually moving so slowly that my watch wasn't recording it as movement? Silly running watch!

Video

On fb over the last couple of weeks, Siteman has been posting videos about what to expect at their various locations when you come in for appointments and treatments. Maaaaaybe this video helps to explain why some days are so long. =) There is other information on this page but about halfway down is the video that I'm talking about for the South County location, where I go most often.

https://siteman.wustl.edu/visiting/south-county/

Fanny is back in town

• Bloodwork, appointment with Dr. T and treatment (Folfori #1 - includes Irinotecan and 5-FU) at Siteman South County

It was a really long day today. We left home before 9 and we got home around 4. I don't know how or why things add up to so much time on certain days, but they just do. We made the decision with Dr. T to add 5-FU to this week's treatment of Irinotecan, so the 5-FU is being infused through a pump for the next 46 hours. We also talked about adding Avastin but we are going to hold off on that until we figure out exactly what we are going to do with my stent. The urological surgeon has talked with us about scheduling another surgery, to replace my stent with a shorter one that might not aggravate my kidney and bladder as much as the current one, which is causing a lot of bleeding. We can't start Avastin until after that possible surgery.

My bloodwork seemed to be a mixed bag. My ANC was in the normal range (thank you Neupogen injections), my CEA (tumor marker) decreased slightly, but some of my liver tests were elevated. The liver results could be side effects from chemo or they could be caused by the tumors in my liver... and either way, they could be permanent. 

• Neupogen injection at the Cancer Care Clinic at Big Barnes

Static would have been better

• Neupogen injection at the Cancer Care Clinic at Big Barnes

Being at the Cancer Care Clinic for 2 hours to get a 5 second injection might lead to some frustration... but getting the injection that I need today in order to get the chemotherapy that I need on Tuesday is important. #holidayweekend #livingitup

It would have all been completely tolerable except that the TV in my pod was stuck ON, it would not turn off and the volume would not turn down, and it was stuck on some cable news station talking about politics... for 2 hours. What was I saying about frustration?

• Neupogen injection at Siteman West County

Sleepy

• Neupogen injection at Siteman West County

Hector is working from home today so it was nice to get a ride to Siteman. Unfortunately for the third straight day, getting up and moving around caused enough pain with the stent that it made me so nauseous that I vomited. This is not a good pattern.

Stented

• Renal scan and abdominal x-ray at Barnes West County Hospital

This stent is causing a lot of pain but according to today's tests, it is still located in the correct position and my kidneys are both draining properly. So, what the heck is going on? And what can we do about it?

Easy

• Neupogen injection at Siteman West County

Lab

• Bloodwork at Siteman West County

My neutrophil count is low so we'll go forward with our plan for Neupogen injections this week.

Jinx

• Trip to the Barnes West County Hospital ER

Apparently I didn't knock hard enough on wood the other day. But after 5 hours in the ER and a few tests, we are headed home with antibiotics.

Awwww

My own advice: more cupcakes

I have had a much better days 1-3 this week compared to two weeks ago. Knock on wood. I feel positive about that. Except that I am losing a lot of my hair. As I have said before (when I've been asked about my hair 500 times), it's not a painful or uncomfortable part of chemo. For me, I'm just afraid that I'll lose some of the normalcy I feel when I interact with people I don't know. I like just blending in and I feel like my outside has always kind of blended in. Except possibly not recently with some additional weight loss. It's been a real challenge to maintain my weight. We talked about that with NP A on Tuesday as well and I got some more suggestions... so we'll how that goes.

Move it

It is important to eat healthy and to be active. So says NBC News and this recent study: http://www.nbcnews.com/health/health-news/colon-cancer-survivors-live-longer-healthy-habits-n761231. I'm not at 30-60 minutes of activity a day but I listen to my body and do what I can. Can't let the treadmill start collecting dust.

Less is more

• Bloodwork, appointment with Dr. T NP A and treatment (Irinotecan #2) at Siteman South County

We had a good conversation today with NP A, who (whom? not sure) I hadn't seen in awhile. We're going to alter a couple of my support prescriptions to see if I can get through these next 2 weeks with less side effects. I'd really like that. After my first round, I experienced all 11 of the most common side effects (that affect more than 30% of users.) I didn't get any of the less common side effects... so I guess that's something.

The Neupogen injections paid off, as my ANC was in the normal range... so we'll repeat that pattern again next week before round three.

Overdressed for this place today

• Neupogen injection at the Cancer Care Clinic at Big Barnes

Come Tuesday, we'll find out if all these injections have helped...

Another one down

• Neupogen injection at the Cancer Care Clinic at Big Barnes

3 Down 2 To Go

• Neupogen injection at Siteman West County

2/5

• Neupogen injection at Siteman West County

Boosting

• Neupogen injection at Siteman West County

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

Checking in

• Bloodwork at Siteman West County

Today's bloodwork gave Dr. T an idea of how the Irinotecan has affected my blood counts. And it looks my body needs some assistance in recovering, so he's scheduled 5 days of Neupogen injections.

Carry on

Irinotecan

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

We reviewed my latest scans with Dr. T - tumor growth and new tumors in the liver, tumor growth and new tumors in the peritoneum, tumor growth in the pelvis and tumor growth and new tumors in both lobes of both lungs. Basically (and as noted in the MRI and CT reports) - it is the progression of my metastatic disease.

So today I started a chemotherapy drug that has a 50% chance of helping. It is the best option available to me. There is a 20% chance that it will help to shrink my tumors, a 30% chance that it will help my tumors to remain stable and a 50% chance that it will not help at all. That's where we're at... 50%. And with that 50% comes the information that the average survival for patients who are in the place to need to start Irinotecan is one year. Of course that is just the average, some patients survive for years and some patients survive for less. All together, it is a lot of difficult information to process.

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

Irinotecan is often given with a couple of other drugs and the combination is referred to as Folfori. However, based on my low blood counts and the importance of being to get Irinotecan right away and every other week without interruption, Dr. T thought it was best to start just with the Irinotecan today and to add the support drugs as possible.

Relief

• Outpatient surgery at Big Barnes to place a stent in my left ureter

When I woke up after surgery, I immediately felt relief from the pain that I'd been feeling, a good sign that the surgery went well and/or that I was well medicated. Dr. D was able to place the stent and assuming I don't have any problems with it, I'll see her again in a few months to have it removed and replaced. I did get a handful of new prescriptions to take home with me and that felt a little overwhelming. Dr. D took a sample from near the kink to culture to make sure that there is not an infection, but one of the prescriptions is a precautionary antibiotic just in case. Now it's just about recovering and waiting to meet with Dr. T on Tuesday to talk about what is next.

Hydronephrosis

This morning I got the phone call that we knew was coming some day, but the one we didn't ever want to get. Dr. T called to talk to me about my scans and it's not good. There are new tumors in new locations and growth and ugh, it's all bad news. Additionally, Dr. T said that we have one problem that requires immediate attention, hydronephrosis. Basically, a tumor is pressing on the tube (ureter) that runs from my left kidney to my bladder. It has caused a kink and the tube has ballooned up behind the kink. It is probably the cause of my back pain and it is not allowing my left kidney to drain properly.

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

Dr. T's office set up an appointment for me right away this afternoon with a urological surgeon. There aren't a ton of choices for this problem. For a patient with advanced cancer, one option is just to deal with the pain and ultimately possibly lose function in that kidney. This surgeon however agrees with Dr. T that trying to put in a stent is another possible option for me. It would be an outpatient surgery under anesthesia to place the stent into the ureter. If during the surgery, the stent isn't able to get past the kink, a third option would be to have a tube placed from the kidney out my back to an external bag. So, let's hope the stent can be placed without any problems. The stent will have to be replaced every 3-4 months through further outpatient surgeries. If chemo could shrink the tumor that is causing the pressure, there is a possibility that a stent wouldn't be needed forever. But, one thing at a time.

Dr. D talked about admitting me to the hospital tonight but based on my preference to be at home, she sent me on my way and scheduled my surgery for first thing tomorrow morning.

Stent and external tube options: