Since June 23rd, 2014

Thursday, December 29, 2016

Newsworthy

The other day NBC News ran a story about Colontown, the Facebook support community that I belong to. It's a quick video that specifically highlights the clinical trial neighborhood and how it can help patients and caregivers navigate the complexity of clinical trials.

http://www.nbcnews.com/nightly-news/video/online-community-for-colon-cancer-patients-empowering-many-840655427940

For example, a quick search for colon cancer on the US National Institute of Health's clinical trial website brought back 3,913 possible trials. How in the world am I supposed to navigate through all of that information without a medical degree?

Tuesday, December 27, 2016

So So So

  • Bloodwork and treatment at Siteman West County
A few months ago when we were scheduling my appointments leading up to my next set of scans, we figured out that the first week of January was supposed to be a treatment week. However, we already had a vacation planned for that week. Dr. T didn't stress about it (so I did my best to not stress about it), he said that I'd just have an extra week off and I'd return to treatment as soon as I was back at home. So all of my appointments were made accordingly.

Then around Thanksgiving, my treatment had to be delayed by a week because my neutrophil count was too low. So my appointments were all adjusted by a week and it seemed that I would not have to miss one after all.

Until... today's treatment had to be delayed (again) due to a really low neutrophil count. So we are back to where we started, I'll get an extra week off chemo. Seems like the break was just meant to be.

P.S. Other than the low neutrophil counts, the only thing that these two delayed treatment days have in common is that I brought out-of-town family with me to both appointments. Hmmmmmmmmmmmmm.........

Friday, December 23, 2016

#winning

After I finished writing my previous post, I checked my e-mail...

and...

I had a notification from Guardant that my November blood test results were available. The results show that the amount of DNA in my bloodstream with my cancer mutation has DECREASED. It's likely a sign that my cancer is not as active, hopefully thanks to this past summer's Y90 and cryoablation procedures and my current chemo regimen of Xeloda and Avastin. It's not the ND (Not Detected) that this test measured last year when I was also having NED (no evidence of disease) scans but it's ZERO POINT TWO PERCENT. And that feels like a win. Just what I needed today. Guardant's testing is still new technology so it's hard to know exactly how to interpret the results, but I look forward to discussing it more with Dr. T the next time I see him (in January after my next set of scans.) Until then, it's Merry Christmas to me!


915 days

Today marks a weird day. Today marks 30 months (2 and 1/2 years) since my cancer diagnosis. Back in June 2014, it was easy to google my diagnosis, to read the statistics and to feel overwhelmed. But I've learned to understand that I'm not a statistic. I'm not the 70 year-old average stage IV colon cancer patient. However, that didn't stop me from blatantly asking one of nurses about the survival statistics last year. And she confirmed that they tell new stage IV colon cancer patients... on average... 2 and 1/2 years. Of course there are exceptions... and I'm shooting for exceptional.

Nestled all around the surgeries, the chemotherapy treatments, the radiation oncology procedures, the blood tests, the scans and ALL of the appointments, I have taken the trips, bought the (running) shoes and eaten the (cup)cakes. Life is short. That goes for everybody. There have been plenty of hard days and plenty of good days in the last 2 and 1/2 years, and I am thankful for every one of those 915 days. Last week I was busy running around and feeling confident about 2017, but this week I finished a weekly dose of Xeloda and I've been fatigued, nauseous and struggling. Hard days. Good days. I'll take 915 more please.

Thursday, December 15, 2016

Because he can

And this video...

http://ftw.usatoday.com/2016/07/espn-craig-sager-fight-against-cancer-video-espys-jimmy-v-award

#onewaytolive #unbreakable #mindovermatter #riseup #sagerlife #kleenex

Craig Sager

It's been an emotional couple of weeks in my on-line support groups. A number of people, very active in the groups, have recently passed away. It makes me sad when I go on-line to look at the groups' postings and none of the names look familiar; the voices that were the strongest when I first joined are not there any more. It makes me really angry at cancer.

And today I heard that Craig Sager passed away from leukemia. This past summer he was awarded the Perseverance Award at the ESPY Awards and I found his acceptance speech to be very inspiring (http://sports.yahoo.com/news/craig-sager-delivers-stirring-espys-speech-i-will-never-give-up-152655840.html). Especially these two parts:

“If I’ve learned anything through all of this, it’s that each and every day is a canvas, waiting to be painted — an opportunity for love, for fun, for living, for learning. To those of you out there who are suffering from cancer, facing adversity, I want you to know that your will to live and to fight cancer can make all the difference in the world. The way you think influences the way you feel, and the way you feel determines how you act.

“Whatever I might have imagined a terminal diagnosis would do to my spirit, it’s summoned quite the opposite: the greatest appreciation for life itself. So I will never give up, and I will never give in. I will continue to keep fighting, sucking the marrow out of life as life sucks the marrow out of me.

Tuesday, December 13, 2016

Brownie Tuesday, Brownie Tuesday

  • Bloodwork and treatment at Siteman West County
I woke up today feeling like it was Christmas morning! My friend D has been organizing a group to walk/run the Chicago Marathon next October with me (since I deferred my 2016 entry for health reasons) and today was the day for my friends to find out if they got accepted into the marathon. And so far TWELVE got in and only 1 didn't "win" the lottery and get in. So I've a runner's high going this morning, lots of adrenaline! When one of the nurses called me back to access my port, I was just babbling and babbling (normally I'm pretty quiet.)

In other news, the lab is running slow today and one test tube even had to be redrawn chair-side because of a labeling error BUT it is Brownie Tuesday. Win some, lose some.



Monday, December 12, 2016

I'm good

Tonight I played soccer with my friends against a team of people that were mostly half my age and most likely all cancer-free (although you can never assume anything.) About halfway through the game, we were up 4-0 and I found myself near their bench just in time to hear a little girl say, "they really aren't that good."

I mean, let's be honest, she's right. For me, it's about trying to stay active and run around a little. I'm a 40 year-old woman with stage IV colon cancer, being good at soccer is not high up on my list of priorities. Lately I've been concentrating on being good at getting through each day with a decent attitude while controlling the side effects of my disease and medications. When I slowly get out of bed tomorrow and get myself to the cancer center for chemo, I'll be good (and proud of myself).

I think BC Diane (before cancer) might have been offended by that kind of comment, but not this Diane. This Diane is still getting opportunities to be active and to play a sport that I love with the people that I love. (For various reasons, not everybody in my circle of soccer friends can still say that. So I count it as a blessing.) We all have things that make us happy (even when other people don't understand) and soccer is that for me.

(Why am I writing in third person there? It must be because it's late and I'm restless, but I'm good.) 




Monday, December 5, 2016

December 5th Fund

Somehow I didn't anticipate that doing random acts of kindness today in honor of a woman, a friend to many of my friends, who passed away earlier this year from breast cancer, would be so emotional. Although thinking back about it now, of course it would be emotional.

Thursday, December 1, 2016

Tutu to you too

Because sometimes you've had a few hard weeks and you're struggling mentally... but coming across old pictures of yourself climbing on obstacles, jumping over fire, crawling through ice cold mud under barbed wire and laughing with friends... reminds you that you have strength within (and support all around).

 

Wednesday, November 30, 2016

Avastin

I went back to the chemocare website, which is always a good source of information for me and I pulled the Avastin description too. Basically, Avastin is trying to prevent my tumors from growing new blood vessels (and getting larger). I'm telling you. Science. Is. Amazing.

From: http://chemocare.com/chemotherapy/drug-info/avastin.aspx

How Avastin works:
Monoclonal antibodies are a relatively new type of "targeted" cancer therapy.  Antibodies are part of the immune system.  Normally, the body creates antibodies in response to an antigen (such as a protein in a germ) entering the body.  The antibodies attach to the antigen in order to mark it for destruction by the body's immune system.  In the laboratory, scientists analyze specific antigens on the surface of cancer cells (target) to determine a protein to match the antigen.  Then, using animal and human proteins, scientists work to create a special antibody that will attach to the target antigen.  Antibodies will attach to matching antigens like a key fits a lock.  This technology allows treatment to target specific cells, causing less toxicity to healthy cells.   Monoclonal antibody therapy can be done only for cancers in which antigens (and the respective antibodies) have been identified.
Avastin works by interfering with the process of angiogenesis by targeting and inhibiting human vascular endothelial growth factor (VEGF).  VEGF is a cytokine (a small protein released by cells that have specific effects on the behavior of cells) which when it interacts with its receptors in the cell leads to new blood vessel formation or angiogenesis.
Note:  We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

Jagged little pill

So today's Xeloda prescription was the first one to arrive from my new mail order pharmacy (due to an insurance change). And when I popped open the bottle, the normally peach pills were... white.

I felt like I couldn't just take them without looking into it. Mistakes do happen, what if that's the wrong drug or not a safe dose for me. I'm picturing a big warehouse full of robots filling the orders... and robots can go rogue! I've seen the movies.

Anyway, it's just a different manufacturer so crisis averted. However, during my search I came across the below good description of how Xeloda works. I think sometimes people don't understand that there are hundreds, probably thousands, of chemotherapy drugs. And many of them do very different things. Science is amazing. If only my old biology teacher, Dr. Lllllllungo could see me now.

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

How Xeloda Works:
Cancerous tumors are characterized by cell division, which is no longer controlled as it is in normal tissue.  "Normal" cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition.  Cancerous cells lose this ability.  Cancer cells no longer have the normal checks and balances in place that control and limit cell division.  The process of cell division, whether normal or cancerous cells, is through the cell cycle.  The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division).
The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division.  Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division.  If the cells are unable to divide, they die.  The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink.  They also induce cell suicide (self-death or apoptosis).
Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific.  Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific.  The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective.  This is why chemotherapy is typically given in cycles.
Chemotherapy is most effective at killing cells that are rapidly dividing.  Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur.  The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss.  Different drugs may affect different parts of the body.
Xeloda belongs to the category of chemotherapy called antimetabolites.  Antimetabolites are very similar to normal substances within the cell.  When the cells incorporate these substances into the cellular metabolism, they are unable to divide.  Antimetabolites are cell-cycle specific.  They attack cells at very specific phases in the cycle.  Antimetabolites are classified according to the substances with which they interfere.

  • Folic acid antagonist: Methotrexate. 
  • Pyrimidine antagonist: 5-Fluorouracil, Foxuridine, Cytarabine, Xeloda, and Gemcitabine.
  • Purine antagonist: 6-Mercaptopurine and 6-Thioguanine. 
  • Adenosine deaminase inhibitor: Cladribine, Fludarabine and Pentostatin.

Note:  We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

Tuesday, November 29, 2016

'Scuse me

  • Bloodwork and treatment at Siteman West County

Tuesday, November 22, 2016

Deep breathe again

Things have a way of working themselves out.


Missing: neutrophils

  • Bloodwork, appointment with Dr. T and treatment at Siteman South County
I got through my bloodwork and appointment with Dr. T so quickly this morning that my blood test results weren't even back yet when I was sent to the treatment room to get checked in.

Unfortunately, when the results came back... my neutrophil count was too low for treatment this week. That hasn't happened in awhile. So no Avastin today. And no Xeloda this week.




Monday, November 21, 2016

American football

Today I learned how to throw the perfect spiral. I also learned that my niece M can throw a lot further than me! Let's see what tomorrow brings. #thankfulweek #gobblegobble

Tuesday, November 8, 2016

#blanketlife

  • Bloodwork and treatment at Siteman West County


Warm blanket heaven on a cold, dark and winter-y kind of day. It could only be better if I had ear muffs to cover up all of the political talk. #electionday

Sunday, November 6, 2016

#hockeyfightscancer

Because hockey and my friend K help fight cancer with me.

Blame it on the rain

On fb today, I came across a video titled: Why Your Cancer Diagnosis is Not Your Fault.
https://m.youtube.com/watch?feature=youtu.be&v=oM3TiAp5EFI

The woman in the video is the author of one of the first cancer-y books that I read after my diagnosis. I feel like I can relate to what she is saying because I've only recently stopped being preoccupied about the "why" in my cancer story... but it hasn't been easy. I've had to learn that obsessing about it does not do anything good for my soul. So I work hard to try and keep my mind in the present.

Tuesday, November 1, 2016

5-FU

Seriously. That name.


I finally got around to watching a CCA webinar from a couple weeks ago titled 5-FU from A to Z: What You Need to Know about the Most Common CRC Treatment.

I am currently taking the pill form of this drug in one week on/one week off cycles. I found the first 20 minutes or so of the webinar to be informative. Here's the link: http://bit.ly/2edRegy.


Thursday, October 27, 2016

Caution

My next prescription of Xeloda has arrived.

Tuesday, October 25, 2016

Don't worry, be happy

  • Bloodwork, appointment with Dr. T and treatment at Siteman South County
Bad news would never be printed on bright green paper, right?


Right! We talked with Dr. T and one of his fellows about last week's scans and they were SO HAPPY. I mean, REALLY HAPPY. My mind was having a hard time processing it because again I was ready for the step up to Folfori chemo. And I think he could see it on my face... so we went through his thought process carefully and he went over the studies that backed up his suggestion for me to stay with maintenance chemo at this time. So we maintain! I had to keep telling my face to "be happy!" because I don't think the message was getting through.

Thursday, October 20, 2016

No new news is good news

The MRI/CT reports become available in my on-line patient portal late this afternoon.

There doesn't seem to be any new significant findings, so that's good. There are always a few things in the detailed report that I want to discuss with Dr. T, sometimes it's just the way things are worded or maybe it's something that hasn't been mentioned in a report before. But overall, the summary is that the liver tumors are responding well to the cryoablation and Y90 procedures. So we'll focus on that and wait to meet with Dr. T next week to see if he still recommends Folfori. My guess is that he will, since the liquid biopsy test from August showed an increased number of cells in my blood with my cancer's genomic alteration.

Guardant is the company that has been processing my liquid biopsy tests and I think this information from their website is useful:

What are genomic alterations and why are they important to cancer?
Genomic alterations are changes that occur within the DNA of cancer cells. Some of these changes accelerate the growth of cancer.

More information about the Guardant test: http://www.guardanthealth.com/guardant360/#how-it-works

Wednesday, October 19, 2016

It's a two gown revelation

  • MRI/CT at Barnes West County Imaging Center
I've decided that early afternoon scan times are no bueno for me. Sure, I get up early to eat breakfast but then I have to wait to eat again until after the scans, so I'm super hungry by the time it's over. And today, the techs had PIZZA... just sitting there, smelling all delicious and mocking me.

After my port was accessed and I got changed (one gown on open to the back and another one on like a robe, my new favorite style, thank you nurse), I had to to wait a little bit while the previous patient finished but I was happy to hear J's voice coming from the CT room. The best kind of tech for me is one who makes it all seem like no big deal, like I just get a scan everyday and it's nothing. I don't even get the full spiel from J anymore, I'm just in and out with "don't forget to drink lots of water" and "see ya later."

As far as the MRI, which took about 45 minutes, I went through the trip to Colorado in my head a few times, distracting my brain from thinking about being wrapped down and pushed inside a tiny, confined space. I was mostly successful.

Tuesday, October 18, 2016

Happiness and laughter in Denver

What should I be doing?

With Dr. T planning Folfori chemo for this week, we decided to plan a mini-vacation as a preemptive strike against our worries and fears for a few days.

We picked Denver, for it's good airfare sale price from St. Louis, for all of it's outdoorsy Fall goodness in October and for the fact that neither of us had ever been there.

And it didn't disappoint. We arrived to the most beautiful, sunny, 80 degree days of awesomeness.

One quiet day was spent walking around the Denver Botanic Gardens (Botanic? Yes.) and another was spent watching a Liverpool game with the local supporters' club at a great Irish pub called The Abbey Tavern. We did try to stay busy, we took a tram to the top of Pikes Peak, we walked around the Garden of the Gods in Colorado Springs, we went to a Major League Soccer game to see the Colorado Rapids play the San Jose Earthquakes, we hit up the Museum of Nature and Science to look at some mummies and we walked the steps of Red Rock Amphitheater. My highlight was when we drove to Estes Park and managed to take a short hike in Rocky Mountain National Park, where Hector captured this moment. I don't know why, but it's one of my favorites.

Rocky Mountain National Park














This picture is pretty great too, the little lake was the turnaround point of our hike. We climbed up nearly 1,000 feet from the trailhead to be approximately 8,850 feet above sea level.

Can you find Hector?














While we were in Denver, we also got to have dinner with some friends of mine who moved there about 6 years ago. It was great to catch up, share Hector with them and laugh about old memories (even if we did somehow forget to take a picture together!) My friend M shared that one of her sisters was recently diagnosed with breast cancer. And that sucks. I hate to think of anybody else I know (even by two degrees of separation) going through any of this. I tried to reinforce that every cancer patient's experience is unique, especially with her sister right at the beginning of it.

So now I'm writing this as we fly back home and return to the real world. The flight attendant says we are beginning our initial decent into St. Louis, ending our escape. Queue the ominous turbulence...

I still don't know what I should be doing, but I'm going to continue to try and enjoy whatever it is as much as I can.

Wednesday, October 12, 2016

Hiccup

  • MRI/CT at Barnes West County Imaging Center
I was scheduled to have scans today but there was a hiccup with the insurance authorization so they've been rescheduled for next week.

Thursday, October 6, 2016

Wanted: NED

A memory reminder popped up today on Facebook. One year ago today was the last time that I had a scan marked as NED (no evidence of disease.) Of course we now know that the liver lesions on my NED scans were actually cancerous, so technically, I was never really NED. But hey, I still like NED, he's still my friend and I hope to see him again sometime.

Reality bites

This article pretty much says it all. If you watch the video, her oncologist says... "I wish I had a crystal ball to be able to look ahead and say things look good today, are they going to keep looking good for the next... for the next couple of weeks... for the next couple of months? I don't know."

Wednesday, October 5, 2016

Healthy(ish) looking

  • Abdominal ultrasound at Barnes West County Hospital
The technician who did my ultrasound today was professional and nice. She had reviewed my last CT and asked me a number of questions about my procedures from the summer. Since she isn't at Siteman nor specifically treating cancer patients, I can easily understand that she wouldn't know the ins and outs of every cancer treatment. This is just a guess but I would bet that an ultrasound tech sees a lot more lady parts than livers.

I did have to laugh to myself because her first question once we got settled was "so do you have a family history of colon cancer?" It's always the first question when I meet somebody new in a medical environment. Basically, why the heck does this 40 year-old healthy looking woman have stage IV colon cancer. If it could happen to her, could it happen to me? That's what I feel like is always running through their minds. I'm quite certain that when she called my name in the waiting room and I stood up, instead of the many gray haired people also there, her mouth dropped open for a few seconds.

Hopefully I'll hear from Dr. T's office this week about the results.

Pink October

Tuesday, October 4, 2016

The man with the bow ties

  • Bloodwork, appointment with Dr. T and treatment at Siteman South County
We talked with Dr. T today about managing my pain and nausea. My abdominal pain has been spiking higher over the past week and he prescribed me something to help with that. They're going to take a closer look at my liver and gall bladder tomorrow with an ultrasound to hopefully get a clearer picture. I felt good about the appointment.

View

#windowseat

Tuesday, September 27, 2016

Holiday

According to the Colon Cancer Alliance, today is World Metastatic Colorectal Cancer Day. I feel like this must be a new thing. Unfortunately when I went to their website and clicked on the Learn More button, I got an error message. So I am going to celebrate by resting... after finishing my week of chemo pills last night.









Tuesday, September 20, 2016

No complaints

  • Blood work and treatment at Siteman West County
I didn't understand the whole story exactly (even as I listened to it being told to multiple other people), but the pharmacy at West County can't prepare chemo right now. So as patient orders are approved, they are faxed to Big Barnes and then a courier drives the drugs out to West County. Seriously. All day long. And today was something like Day 8 of this process.

One of my nurses suggested that she was going to charge me extra for the long nap I got.

My vitals, blood work and protein urine test all looked okay today, so that's good. And I'm home before lunchtime, so I really can't complain.


Monday, September 19, 2016

Flying high

I had a really good weekend. The weather was nearly perfect and we were able to do a lot of things outside. After the failed liver surgery in May, I had real doubts about being able to do any of the active things that I love again. So being outside with Hector and our friends over the weekend really lifted my spirits. Now I'm just going to need a few days to recover, but it was all worth it.

Tuesday, September 6, 2016

Like watching paint dry

  • Bloodwork, appointment with Dr. T and treatment at Siteman South County
"The good news is that you can still get treatment today."
Dang, no window seats left.












Since proteinuria (an elevated level of protein in urine that can be a sign of kidney troubles) is a possible side effect of Avastin, they always test my urine before every treatment of Avastin. And today, my protein level was elevated. So I "get" (this is the bad news) to do a 24 hour urine test to possibly get some additional information about what is going on.

The Avastin website gives a lot of information about side effects... but it's a lot of information to try and sort through. http://www.avastin-hcp.com/about-avastin/safety#important_safety_information Here's the section just on proteinuria.




Monday, August 29, 2016

Knock on wood

I'm trying to not get too excited about how I'm feeling today. It's just one day, but I've run a couple of errands, I had lunch with Hector... and I haven't napped... yet.

When we met with NP S last month, she said younger patients (that's me in the colon cancer world) can sometimes have a slower recovery from cryoablation and it can take two months. TWO MONTHS. That sounded crazy to me at the time, as I had returned to work after big surgeries in less time than that. But here we are, 8 6 weeks after the cryoablation and I'm finally having a decent day (edited because wait it's only been 6 weeks since the cryoablation, the Y90 was 8 weeks ago).

Tuesday, August 23, 2016

Actually

  • Bloodwork, appointment with Dr. T NP S and treatment at Siteman South County
There are a couple new things on my CT that we are going to watch, but they could just be side effects from the cryoablation. My next scheduled scan, in 12 weeks, should give us a clearer picture on them. Some good news is that the two tumors in my liver that were treated by cryoablation seem to have reacted well to that treatment. Since my scan is "not bad at all actually," we are going to try using maintenance chemo again (Xeloda and Avastin) to keep my disease stable and not growing. The peritoneal tumors that Dr. C saw during my surgery in May are still not large enough to show up on my scan, so that's good, but then we also don't know what is going on with them. To paint a mental picture of the peritoneal tumors, NP S used the analogy of when you blow on a dandelion and all the little bits go everywhere. So we know I have all of these little bits, but they aren't grouped together to be large enough to appear on the CT yet. I still haven't decided if I like that analogy or not.

So the idea is for my own immune system and the maintenance chemo to work together to keep them small. Bring on stability...

Friday, August 19, 2016

Speedy

  • CT at the Barnes West Imaging Center
I think we set a new record today for speed of appointment. We were in and out of there in less than 30 minutes. There won't be any news about the results today so we'll enjoy the weekend still hoping for the best. And we'll see what next week brings.

Tuesday, August 16, 2016

A week for tests

  • Bloodwork, appointment with Dr. T and treatment at Siteman South County
I was feeling a lot of anxiety last night about today, but I woke up feeling ready. We got to Siteman early and settled in. They accessed my port for my bloodwork and left the needle in (reasoning: because I was scheduled to get treatment after I saw Dr. T.)

It was a long wait to see him, a couple of hours, but it was worth it to see him face to face. And while starting Folfori chemo today was an option, he thinks that we need to run some tests first to establish a baseline right now status for my disease before we do anything new.  So I'll have a CEA blood test, a Guardant liquid biopsy test and a CT this week. And I'll meet with Dr. T again next week to go over it all, unless the CT makes the decision really clear. In that case, it could be something that we discuss on the phone and jump directly into next week.

We talked about Folfori, about maintenance chemo possibly being an option again and about immunotherapy clinical trial options. It's so much to think about.

To free our minds a little bit, Hector and I went for a walk, the longest one we've taken in months. It was slow and hot and well... the conversation kept circling back to all the things we talked about with Dr. T... but how could it not.

Tuesday, August 9, 2016

Nappy nap

  • IV fluids and meds at Siteman West County
Another day to give my recovery a boost. My pod was crowded this morning. One person getting their first chemo treatment ever. One person getting the chemo that I will most likely be getting next week. Hard to relax when it is so busy, but I did manage a little nap during the 2 hours that we were there. (Hector also did some napping in his chair.)

Wednesday, August 3, 2016

Liquid breakfast

  • IV fluids and meds at Siteman West County
Fluids to help prevent dehydration and meds to help with nausea.

Tuesday, August 2, 2016

Deep breathe

  • Bloodwork and appointment with Dr. T NP S at Siteman South County
Time to try some new things to start feeling better.

Thursday, July 28, 2016

Ugh

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

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

Sunday, July 24, 2016

Guard cat

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

Wednesday, July 20, 2016

Nurse Stripes

He's keeping a close eye on me today.

Tuesday, July 19, 2016

Home sweet home

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

Scan me

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

Monday, July 18, 2016

Frozen

  • Cryoablation on 2 liver tumors at Big Barnes with Dr. S
Today definitely didn't go like I thought it would go. As was explained to me prior to the procedure, I was placed under sedation rather than general anesthesia. I was told that it would be a deep sleep like what happens during a colonoscopy and I wouldn't feel or remember anything.

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

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

The calm before the crazy


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

Sunday, July 17, 2016

Wednesday, July 13, 2016

How much can one liver take?

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

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

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

Friday, July 8, 2016

A little less green

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

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

Thursday, July 7, 2016

Di's Body 0, Science Beads 1

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

Side effect information from one of the bead producers

Y90 information from another trusted university medical center


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

Just a girl and her vomit tray

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

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

Wednesday, July 6, 2016

Oh Canada

  • Y90 procedure in the CAM building at Big Barnes with Dr. S
A young new resident came in to greet us and to go over some of the details for today's procedure. He has another procedure that he'll be doing at the same time as mine so somebody "higher up the chain" will be doing my procedure. He shares that it is a "win win situation" for me. I hold off on asking him how many of these that he has done. I did ask him about pre-meds, will they give me anything for nausea or pain? He confidently answers no, they won't be giving me anything, as most people don't get side effects that require medications.

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

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

Sunday, July 3, 2016

Run Forrest Run

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

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

Saturday, July 2, 2016

Colontown

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

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

Friday, June 24, 2016

Circle theory and kvetching

In early 2015 I had a fantastic conversation with my favorite psychologist at Barnes about something she called circle theory. (Somebody recently posted a link on fb about the idea and it reminded me of that conversation.) My psychologist drew some circles inside of each other, explaining that I was the most inner circle, the next circle was Hector, then my closest family and friends, then other family and friends, and so on. I could try to explain it but this article does a pretty good job.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407



I didn't catch cancer like you catch a cold. It's me, my own cells, that for some reason have decided to grow abnormally. To form the tumor that I had in my colon, it likely started with a mutation during cell growth some 5-10 years before I was diagnosed. YEARS.

Cells divide and have mutations every single day. But what causes particular mutated cells to then continue to multiply?

Since my colon tumor grew all the way through the wall of my colon, the mutated cells traveled within my body cavity to my ovaries, to my omentum, to my diaphragm... and who knows where else. The mutated cells got in my blood stream and traveled to my liver... and who knows where else. And the mutated cells entered my lymphatic system and traveled to lymph nodes in my abdomen... and who knows where else. So sure, surgery has removed the original tumor but those tiny mutated cells are now part of me. My scans might not have shown any evidence of disease for awhile but that's because individual cells are minuscule. When the liver tumors appeared on my CT scan in December, they were being measured at 4 to 6 millimeters each, and that's millions of cells. The mutated cells were there all along, just too small to be seen. Chemo has destroyed many cells and hopefully slowed their growth. And it has hopefully slowed the progression of my disease, but I haven't done something wrong and I haven't missed doing something. The cancer was there and IS there. It will adapt to the chemotherapy and there's nothing that I can do about it.

That is the story inside my circle.

Monday, June 20, 2016

Just be

I feel like I'm serious all the time now, even when I'm laughing. Things always feel calculated, with a purpose, for a reason. I wish I could just be sometimes.

Wednesday, June 15, 2016

Trial and error

I signed the paperwork for this clinical trial today. The trial coordinator told me that I was the most prepared patient that she's ever had. Point for me.

Back in the saddle again

  • Bloodwork and treatment at Siteman West County

It's on like Donkey Kong

I heard from Dr. S's office today and the scan that I had yesterday shows that the mapping went well. The test isotope (tracer) that they used went exactly where they wanted it to. Only a small percentage ended up in my lungs, and that amount is well below the amount that would prevent the procedure.

So we're on for July 6th.


Tuesday, June 14, 2016

Nuclear

  • Hepatic, Splenic Radionuclide Imaging, Tomography (SPECT) in the CAM building at Big Barnes
After the mapping, they rolled me to the nuclear medicine department for a scan. I don't really remember much except that I had my eyes closed on the way back to the recovery room and then suddenly it seemed really bright. I opened my eyes and there I was being wheeled across the walkway in the main CAM lobby (with it's big sunny atrium). Hello world.

Mapquest

  • Mapping for the Y90 procedure in the CAM building at Big Barnes
Everything seemed to go smoothly today. My nurse anesthetist was great, Tony was informative and just generally friendly. Although as soon as we got into the procedure room, Dr. S basically told him to zip it. "Tony..." "Yes sir!"

I hope I'll see Tony again when I go back, a familiar face is always nice. One face that I won't see again is the face of the physician that performed my procedure. Although I did enjoy listening to him sing along to 80s pop on Pandora, he is done at Barnes in 2 weeks. From what I have learned, every year the new groups of interns, residents, fellows, etc. start on July 1st. So when I go in on July 6th, I think I'll ask my new person how many of these procedures he or she has done. I could very well be the first. (Their first successful one too!) Dr. S and Dr. P will of course be in the room too, and we already have today's mapping to guide them, but still. It's easy to say that you appreciate a teaching hospital until it's you laying on the table mostly unconscious.

It was pretty weird to be half awake while they worked a catheter from my (right) leg up through my arteries to my liver. I had to be awake so I could hold my breathe at various times while they found their way there. I was slightly uncomfortable a few times but it was mostly just laying there semi-conscious and exposed to the room. Good times.


Wednesday, June 8, 2016

Healing

  • Appointment with Dr. C in the CAM building
My surgical incision isn't completely healed, and it needs to be, before we can do any new treatments.

Dr. C explained how the healing process is from the inside out... and that he can see (eww) that my inside is healed, but there's just a small fatty layer and skin that hasn't healed all the way. Dr. C thinks that I am good to start chemo next week if that turns out to be the plan.

I'm pretty sure that THIS will be the last time that I see Dr. C.

7.2

  • Blood work and a CT at Siteman West County
The results from my CT are in and basically they are "not too bad." There are no new tumors. The four liver tumors have each grown incrementally, as expected since I have been off of chemo since March 22nd. Sigh.

My blood work is okay, except that my CEA continues to rise. I am officially above the normal range for the first time.


Friday, June 3, 2016

Can you hear me now?

Dr. T called today to talk about the discussion that my team has had about my treatment options. And basically we're going to wait until we see next week's CT results before we decide anything. But there are options, and that's good.

Wednesday, June 1, 2016

What do you mean by NO exactly?

  • Appointment with Dr. G at Barnes West County
It's funny to be in Dr. MM's office but seeing another doctor. (There are probably 10 doctors that see patients out of this office, but for some reason it still feels weird.)

It's a short wait before Dr. G comes in with one of his fellows. It's a good discussion. I like him. But. He does not feel like cytoreductive surgery, with chemotherapy put directly into the abdominal cavity afterwards, is a good option for me. The candidates for this surgeon are chosen carefully. It's a major surgery. They take out all the cancer they see. So that could be the rest of my large intestine, it could be portions of the small intestine, pieces of the abdominal lining, etc. (Often the appendix and ovaries come out, but hey mine are already gone!) If they see a tumor, it comes out. That's the idea, removing all cancer and then washing the abdomen with chemo directly, to get anything that can't be seen with the naked eye. But there's no decision making with me during the surgery about what to take or not take. Everything goes.

It's THE surgical option for peritoneal mets. And he's saying NO. To really treat all of the cancer, he believes that the best option would be a stronger chemotherapy. My eyes are getting a little watery, he sees it, I feel it. (Chemotherapy is never going to be a cure, so it's hard to hear this surgeon say that chemo might be the best option. Don't surgeons love to cut?!) Based on what Dr. C saw during my last surgery, Dr. G feels like my disease isn't advanced enough to advocate doing this surgery. (It's about quality of life. Three little words that I love to hate.) He thinks that maybe the surgery could be an option in the future. Hmmm. I ask Dr. G... since we can't see these peritoneal mets on any scans, how would we know when the surgery might be an option? When I start having side effects? Couldn't it be too advanced at that point?

Dr. G takes a moment and recalls a surgery that he did last year for someone with a case similar to mine. He did do the cytoreductive surgery and then at the same time, installed a pump (HAI pump) that put chemo directly into the liver. I can feel the wheels turning in his head. He concludes that the best thing is a discussion with the rest of my medical team and that I should expect to hear from Dr. T's office soon.

More talk about beads

  • Appointment with Dr. P in the CAM building at Big Barnes
Dr. P is the other half of the radiology team that would be involved in the bead procedure. (Both doctors will be in the room during the procedure.) While Dr. S will be involved in mapping the procedure and getting the beads where they need to be, Dr. P will be involved in calculating the dose and ordering the spheres. The spheres are ordered specifically for me and that is part of the reason that the procedure has to be scheduled at least a few weeks into the future. My very own spheres of radiation!
Dr. P feels like it is important for me to have a plan for the peritoneal mets as well as the liver mets. He isn't completely convinced that Y90 IS the right thing for me. I mention that I am meeting with Dr. G to talk about the peritoneal mets later today though. Dr. P mentions that the members of my medical team will have a discussion after all of these consultations. *nodding my head* That makes sense. Let's get all of the information and then make the best calculated decision.

Thursday, May 26, 2016

An interesting consult to save the day!

  • Appointment with Dr. S at Big Barnes
Before meeting Dr. S today, Brenda and I had a good 30 minute conversation with one of his fellows. I had to kind of start from the beginning as the fellow told me that he didn't have any information about my case. Oooookay. He explained that Dr. S had sent him in to see "an interesting consult." That's me. An interesting consult. Not exactly a superhero nickname, but I'll take it for now.

The procedure that we are here to talk about includes using beads to delivery radiation directly to my liver tumors. The science of it is pretty wild. I find it all really interesting. (If you think you might find it interesting, here's a good link to the website of one of the manufacturers: Sirtex spheres website.) After going over my history and the details of the procedure, the fellow steps out to relay the information to Dr. S.

A few minutes later, Dr. S comes into the room. He struggles to remember the fellow's name, so it's a good thing that I was paying attention. lol "It's Dr. J!" A light moment always helps to take the tension out of a room. Anyway, Dr. S has examined my most recent MRI (from before the surgery) and spoken to Dr. T... and they agree that this procedure is a good option for me. Limited risks and down time with the goal of shrinking the liver tumors. We like shrinkage.

My recovery buddy


Monday, May 23, 2016

The shortest walk

Moving around is an important part of recovery.  Soooo... I moved around a little today, less than I originally planned when I left the house, but it did get me outside for a few minutes.




Friday, May 20, 2016

Not right

  • Visit to the ER at Barnes West County Hospital and a head CT
I was at home by myself this afternoon (alone really for the first time since my surgery) and my left arm and left leg fell asleep. First it was my leg. I thought maybe I had been sitting funny so I got up and walked around. No relief. Then 5 minutes later, my left arm fell asleep. Pins and needles, numbness, some weakness. Definitely not normal. I looked over my discharge papers and it mentions to call into the office about any numbness. When I speak to the PA in Dr. C's office, she recommends that Hector come home and take me to the local ER.

The ER doctor runs a head CT and everything looks fine on that. He seems convinced that everyone reacts differently to chemo and that it is from the chemo. But I haven't had chemo since March 22nd. And it has been more than a year since I have had the drug oxaliplatin, which is the drug that caused all of my numbness. But I'm tired and there's really nothing else to do... and they aren't worried. So we are sent home with a medicine for anxiety and something for muscle spams. Seriously. (I don't take either one.)

Last year, after the 10 rounds of oxaliplatin, I did have a lot of numbness in my hands and feet (not up my leg nor in my arm). Within a few months though, my hands felt pretty normal and my feet, while not totally normal, do feel better. But today's numbness was my foot AND my leg up to my knee, and my hand AND my arm up to my elbow. It was unnerving and is unnerving... as it still remains.

Thursday, May 19, 2016

Yeah yeah yeah

  • Appointment with Dr. C in the CAM building
Listening to Dr. C outside the room and hearing all of the information constantly being told to him as he goes in and out of other rooms I realized that Dr. C is one busy and amazing doctor. I overheard one of the PAs presenting my case to him and she said just a couple of details, "Mrs. Burns, 40 year-old woman with colon cancer, liver..." and he cut her off with a "oh yeah yeah yeah" and burst right in to the room. It must take a lot to keep all of his cases straight but at least I'm still memorable.

Today's appointment was pretty easy. The staples came out and everything looks to be healing okay. Dr. C had me moving around to check for a hernia and I passed all the tests.

And just like that we're done... and I'll probably never see him again.

Bummer, I really liked him.

Tuesday, May 17, 2016

P-L-A-N, what's that spell? H-O-P-E

  • Appointment with Dr. T at Siteman South County
My sisters and Hector all came with me to meet with Dr. T today. We talked about our options for going forward, maintenance chemo, other surgical options, radiation options, additional chemo options, etc. Of course nothing can happen until I have recovered from surgery. So while I am recovering over the next couple of weeks, Dr. T is going to set me up for some consultations with specialists to work on the plan.

Friday, May 13, 2016

Ouchie

  • Released from the hospital for home
It's just 20 staples. Another scar to add to my collection. But it is good to be home.


Thursday, May 12, 2016

Fly by

I finally got to see some sunshine today. And a helicopter fly by just for me.

Wednesday, May 11, 2016

LGB

Apparently there have been some problems with cable TV service in St. Louis tonight. But not here at Barnes. Hey, I was awake... for part of it!

Monday, May 9, 2016

Today

It's a good day for some surgery. I'm sure Dr. C is getting a good night's rest and he will be sharp and ready to go in a couple of hours. #nervousnotnervous #scarednotscared

Friday, May 6, 2016

Are YOU ready for this?

  • Colonoscopy with Dr. MM at Barnes West County
Dr. MM's fellow made a joke about the colonoscopy going quickly due to my shortened colon. And then it was over. It was all clear and that's good news! 

Wednesday, May 4, 2016

I've been assessed

  • CPAP appointment at Big Barnes (Center for Preoperative Assessment and Planning)

Ever so slightly

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

Let's change the station

  • MRI at Big Barnes
Tech: "Is (xyz) radio station okay?"
Me: "Sure."

Cue music. Er cue morning talk show. Cue discussion about the number of deaths caused by medical mistakes. Cue data highlighting medical mistakes that cause approximately 250,000 deaths per year.

That can't possibly be right. Can it? http://www.nbcnews.com/health/health-care/could-medical-errors-be-no-3-cause-death-america-n568031.

Tuesday, April 26, 2016

More and more appointments

  • Appointment with Dr. MM (and Dr. T) and blood work at Siteman South County
Dr. MM confirmed that we should schedule a colonoscopy during this chemo break and more specifically, before my surgery. So. Next week.  He said that for the first year follow-up, we aren't really looking for new polyps or tumors in my colon, but more likely, something that was there last year but too small to be detected at that time.

I was scheduled to meet with Dr. T too but instead of waiting around for that appointment, they communicated to me that I didn't need to see him again until after my surgery. I suppose that's okay. I did have a few questions but I know that there really won't be any answers until after my surgery.

My blood work results are in and my CEA came back at 3.9 (the highest it's ever been). However, it turns out that the CEA testing method has recently been updated and this is the result from that new method that has a "normal" range of 0-5. For the next 6 months, both methods are going to be used. The result from the old method is 1.8 and that method has a normal range of 0-2.5. So it would seem that there really is no change from last month's result of 1.9 (old method). #science