So I started chemo again yesterday. I feel okay today - just tired and a little sick, but no worse than I've been feeling lately. The drug is called Topotecan, which I call the fruitloop drug because for some reason I can't say it and the last part kind of sounds like "toucan". They also gave me Dexamethosone to combat the immediate nausea.
This was by far the easiest chemo I've had. I was in the chair for less than 45 minutes, where in the past, with all the anti-everything drugs they had to give me, and the amount of chemo they gave me, I was usually there for about 5 hours. And they didn't have to give me anything like Benedryl, so I didn't spend the next three hours loopy and asleep.
I started chemo because I have more lumps growing in the area where I just had surgery, and most of the lymph nodes below my rib cage now show growth activity. Pretty fast growth, actually, as scary as that is. There's been no spread to bone or guts, which I'd expected owing to my recent hip aches and bouts of nausea. The aches and nausea are most likely caused by joints putting pressure on the growing nodes, and nodes irritating my stomach or guts. I also have some semi-permanent swelling in my legs because the nodes that would move the fluid up to my torso are damaged.
A lot of people have asked me what lymph nodes are. My simple understanding of it is that lymph nodes are a system of very small "pumps" that line the bigger blood vessels to help the heart move fluids through the body. Unfortunately, they are all connected, so once cancer is in one of them, cancer could be in any of them, although it does tend to spread to the closest first. There is no research that supports the surgical removal of known affected lymph nodes to stop the spread of the cancer.
Cheers
I'll post here when there are updates or changes to my treatment or status - it makes for a rough day to call eighty something people to give them updates and then they cry at you. You are welcome to pop on anytime, or give the link to anyone who's interested. My partner-love Sandra, or my sister Cori, might also post.
A Little About Me
The comic books lied to me.
I've been poisoned, radiated, gutted, shot, implanted with bionic devices, stabbed, frozen, hung, burnt, bitten by many and various wild animals, drowned, sprayed with acid, electrocuted, blown up, run over, and I've fallen off cliffs and tall buildings... And I'm still just me.
Shouldn't I have superpowers by now?
I've been poisoned, radiated, gutted, shot, implanted with bionic devices, stabbed, frozen, hung, burnt, bitten by many and various wild animals, drowned, sprayed with acid, electrocuted, blown up, run over, and I've fallen off cliffs and tall buildings... And I'm still just me.
Shouldn't I have superpowers by now?
Cancer and Treatment Timeline
Feb 4th, 2005- Surgery and Diagnosis
Diagnosed with Endometrial Cancer involving both ovaries and uterus when I went into surgery at Alta View for removal of a supposed ovarian cyst. It turns out that the mass seen on the scan was a 14 cm ovarian tumor (about the size of my 2 fists) and the other ovary and the uterus looked ugly, so Dr. Russel Smith, ObGyn, did a total hysterectomy.
Mar 15th, 2005- Surgery
I got opened up (top to bottom this time, as opposed to side to side like for the hysterectomy) by Dr Christopher Jolles, Oncologist. This second surgery at Cottonwood was necessary to check for metastasis as my cancer hadn't grown in a recognized pattern and major contamination was feared. He gutted me, removed some lymph nodes, some tissue, and my appendix, checked my liver and my stomach and bowels, and then put most everything back and stapled me up.
May 2nd - Aug 17th, 2005- Chemotherapy
Chemo agents: Carboplatin and Taxol, given intravenously once every 3 weeks by Dr. Nittin Chandramouli at Utah Cancer Specialists. A bunch of other drugs and fluids are given at the same time to try and reduce allergic reactions to the drugs, and side effects of the poison that is the chemo. Side effects: decreased blood cell counts, hair loss, taste changes, increasing fatigue, mild aches, and mild nausea and loss of appetite.
Sep 21st - Oct 31st, 2005- Radiation Therapy
Daily radiation bombardment to my pelvic area with emphasis on lymph nodes and areas of the pelvic wall where the cancer touched. Done by Dr. Thomson at Cottonwood. Side effects: felt like I had a sunburn on the inside of my skin, mild fatigue, felt like I had constant UT and yeast infections, drastic increase in bowel activity, and scarring in my bowels.
Apr 25th, 2006- Surgery
Removal of a fast-growing lump from my lower left abdomen by Dr. Jolles at Cottonwood. Pathology confirmed endometrial cancer, and subsequent scans showed growth activity in the lymph nodes around where my girlie parts used to be.
Jun 2nd, 2006- (outpatient) Surgery
Insertion of a PortoCath in my right shoulder/chest. It's basically a titanium IV port that is under my skin, with a catheter that runs up under my collarbone and punches into my jugular. Now they don't have to start an IV in my arm or leg every time I need treatment, blood draws, surgery, etc.
Jun 7th - Nov 10th, 2006- Chemotherapy
Chemo agents: Cisplatin and Adriamycin, given intravenously every 3 weeks by Dr. Chandramouli at Utah Cancer Specialists. In addition to the other fluids and drugs they'd give me to try and combat side effects, I was also given shots of Neupogen or Neulasta, and Aranesp to promote blood cell growth. Three or four times I received blood infusions. Side effects: decreased blood cell counts, hair loss, taste changes, nausea and loss of appetite, ass-dragging fatigue, bone aches, mouth sores, ringing ears and slight hearing loss, and numbness and tingling in my hands and feet. I also started taking a daily drug called Megase, a hormone/steroid that may be helpful in treating estrogen-eating cancers. The side effects of that one were weight gain (yay!) and swelling in my legs.
Spring and Summer 2007- Watching and waiting
Scans showed a small growth on my lower right abdomen, and more growth activity in more lymph nodes in my pelvis. I'm out of chemo and radiation options in hopes of a cure or remission, and the growth rate was not high enough yet to start a chemo drug that may help slow the cancer.
Nov 6th, 2007- Surgery
The "small growth" blew up to about 10 times it's original size during the month of October. Then, because of the fast growth and damage to surrounding tissues, it really blew up and ruptured out all sorts of gooey yellow juices and blood. Dr. Jolles removed the tumor at Intermountain Medical Center, and a plastic surgeon, Dr. Rodney Schmelzer, repaired the area and covered the hole.
Jan 29th - Mar 19th, 2008- Chemotherapy
Chemo agent: Topotecan, given intravenously once a week for 3 weeks, I get the 4th week off, then once a week for 3 weeks etc., at Utah Cancer Specialists. I'm also getting shots of Aranesp to try and increase red blood cell production. Side effects: decreasing blood counts, hair loss, increasing fatigue, headache, mouth sores, and mild nausea.
Apr 2nd - Sept 3rd, 2008- Chemotherapy
Chemo agent: Taxotere, given intravenously once a week for 3 weeks, 1 week off, repeat, at Utah Cancer Specialists. Side effects: decreasing blood counts, hair loss, increasing fatigue, headache, backache, mouth sores, random nausea and diarhea, taste changes, and tingling and numbness in my feet and hands. I'm fighting lymphedema in my legs (primarily in the left) due to damaged or cancer-filled lymph nodes.
Oct 9th, 2008 - Nov 6th, 2008 - Chemotherapy
Chemo agent: Doxil, given intravenously once a month. Side effects: decreasing blood counts, increasing fatigue, random nausea and diarhea, mouth sores, radiation recall (the areas that have had radiation therapy get irritated), tingling and numbness in my hands and feet, and cracked peeling and tender hands and feet. Still fighting the lymphedema - that will be with me the rest of my life due to damaged lymph nodes.
Dec 11th, 2008 - April 10th, 2009 - Chemotherapy
Chemo agent: Gemzar, given intravenously weekly, one week off every 4 weeks. Side effects: decreased appetite, decreasing blood counts, increasing fatigue, ass-dragging fatigue actually, and flu-like symptoms for about 24 hours after treatment.
Diagnosed with Endometrial Cancer involving both ovaries and uterus when I went into surgery at Alta View for removal of a supposed ovarian cyst. It turns out that the mass seen on the scan was a 14 cm ovarian tumor (about the size of my 2 fists) and the other ovary and the uterus looked ugly, so Dr. Russel Smith, ObGyn, did a total hysterectomy.
Mar 15th, 2005- Surgery
I got opened up (top to bottom this time, as opposed to side to side like for the hysterectomy) by Dr Christopher Jolles, Oncologist. This second surgery at Cottonwood was necessary to check for metastasis as my cancer hadn't grown in a recognized pattern and major contamination was feared. He gutted me, removed some lymph nodes, some tissue, and my appendix, checked my liver and my stomach and bowels, and then put most everything back and stapled me up.
May 2nd - Aug 17th, 2005- Chemotherapy
Chemo agents: Carboplatin and Taxol, given intravenously once every 3 weeks by Dr. Nittin Chandramouli at Utah Cancer Specialists. A bunch of other drugs and fluids are given at the same time to try and reduce allergic reactions to the drugs, and side effects of the poison that is the chemo. Side effects: decreased blood cell counts, hair loss, taste changes, increasing fatigue, mild aches, and mild nausea and loss of appetite.
Sep 21st - Oct 31st, 2005- Radiation Therapy
Daily radiation bombardment to my pelvic area with emphasis on lymph nodes and areas of the pelvic wall where the cancer touched. Done by Dr. Thomson at Cottonwood. Side effects: felt like I had a sunburn on the inside of my skin, mild fatigue, felt like I had constant UT and yeast infections, drastic increase in bowel activity, and scarring in my bowels.
Apr 25th, 2006- Surgery
Removal of a fast-growing lump from my lower left abdomen by Dr. Jolles at Cottonwood. Pathology confirmed endometrial cancer, and subsequent scans showed growth activity in the lymph nodes around where my girlie parts used to be.
Jun 2nd, 2006- (outpatient) Surgery
Insertion of a PortoCath in my right shoulder/chest. It's basically a titanium IV port that is under my skin, with a catheter that runs up under my collarbone and punches into my jugular. Now they don't have to start an IV in my arm or leg every time I need treatment, blood draws, surgery, etc.
Jun 7th - Nov 10th, 2006- Chemotherapy
Chemo agents: Cisplatin and Adriamycin, given intravenously every 3 weeks by Dr. Chandramouli at Utah Cancer Specialists. In addition to the other fluids and drugs they'd give me to try and combat side effects, I was also given shots of Neupogen or Neulasta, and Aranesp to promote blood cell growth. Three or four times I received blood infusions. Side effects: decreased blood cell counts, hair loss, taste changes, nausea and loss of appetite, ass-dragging fatigue, bone aches, mouth sores, ringing ears and slight hearing loss, and numbness and tingling in my hands and feet. I also started taking a daily drug called Megase, a hormone/steroid that may be helpful in treating estrogen-eating cancers. The side effects of that one were weight gain (yay!) and swelling in my legs.
Spring and Summer 2007- Watching and waiting
Scans showed a small growth on my lower right abdomen, and more growth activity in more lymph nodes in my pelvis. I'm out of chemo and radiation options in hopes of a cure or remission, and the growth rate was not high enough yet to start a chemo drug that may help slow the cancer.
Nov 6th, 2007- Surgery
The "small growth" blew up to about 10 times it's original size during the month of October. Then, because of the fast growth and damage to surrounding tissues, it really blew up and ruptured out all sorts of gooey yellow juices and blood. Dr. Jolles removed the tumor at Intermountain Medical Center, and a plastic surgeon, Dr. Rodney Schmelzer, repaired the area and covered the hole.
Jan 29th - Mar 19th, 2008- Chemotherapy
Chemo agent: Topotecan, given intravenously once a week for 3 weeks, I get the 4th week off, then once a week for 3 weeks etc., at Utah Cancer Specialists. I'm also getting shots of Aranesp to try and increase red blood cell production. Side effects: decreasing blood counts, hair loss, increasing fatigue, headache, mouth sores, and mild nausea.
Apr 2nd - Sept 3rd, 2008- Chemotherapy
Chemo agent: Taxotere, given intravenously once a week for 3 weeks, 1 week off, repeat, at Utah Cancer Specialists. Side effects: decreasing blood counts, hair loss, increasing fatigue, headache, backache, mouth sores, random nausea and diarhea, taste changes, and tingling and numbness in my feet and hands. I'm fighting lymphedema in my legs (primarily in the left) due to damaged or cancer-filled lymph nodes.
Oct 9th, 2008 - Nov 6th, 2008 - Chemotherapy
Chemo agent: Doxil, given intravenously once a month. Side effects: decreasing blood counts, increasing fatigue, random nausea and diarhea, mouth sores, radiation recall (the areas that have had radiation therapy get irritated), tingling and numbness in my hands and feet, and cracked peeling and tender hands and feet. Still fighting the lymphedema - that will be with me the rest of my life due to damaged lymph nodes.
Dec 11th, 2008 - April 10th, 2009 - Chemotherapy
Chemo agent: Gemzar, given intravenously weekly, one week off every 4 weeks. Side effects: decreased appetite, decreasing blood counts, increasing fatigue, ass-dragging fatigue actually, and flu-like symptoms for about 24 hours after treatment.
2 comments:
Hi Casey Jo and Sandra. Thanks for posting this. Love you both like sistas!
Heidi (and Bo)
I think you should write a comic book of your life to show how super hero's really live. You are a super hero to us, you have endured far more in your short life time them most and us "YOU ARE STILL HERE". You have given research a fight for the money and help many to come with your power and strength. Thank you
love you lots Calie
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