- Bloodwork and treatment (Irinotecan #10) at Siteman West County
Monday, October 30, 2017
Thursday, October 26, 2017
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.
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.
Wednesday, October 25, 2017
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.
Tuesday, October 24, 2017
Platelets
- Bloodwork, appointment with Dr. T and NP A and
treatmentat Siteman South County
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...
Tuesday, October 17, 2017
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.
Tuesday, October 10, 2017
Monday, October 9, 2017
Clear
- Bloodwork and chest xray at Siteman West County
Thursday, October 5, 2017
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.
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?
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.
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
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.
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 |
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.
Tuesday, October 3, 2017
Kitchen sink
- Bloodwork, IV fluids, IV Zofran, blood draws for cultures, urinalysis, chest x-ray and
Neupogen injectionat 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.
Subscribe to:
Posts (Atom)