Grrrr... let me try this again. I think this one will go better.
I'm the oldest, or, I'm younger than you. I'm supposed to look after you. And you've already been through this with my mom, you shouldn't have to take care of another one. I worry about you, and having you worry about me is a nice little circular trap in my brain that won't stop spinning.
I'm not spurning YOUR help, or even ALL help, I just know things will get worse to when I will definitely need help. I more than appreciate everything you're doing for me, but I don't want to burn you out on doing things for me, because Sandra and the rest of my family will need your help and support down the road and I need you to look out for them.
I'm pretty independent, so while I can do things for myself, and maybe even for others, I would really like to.
I know you care for me, and I'm sorry I get frustrated when you ask even a simple, "how are you?". But really, imagine your left toe hurts, and 40+ people ask you about it all day, every day, for weeks, and months, and even years now. Casey Jo does not equal cancer. I am still about other things and even though your sentiment touches me, I think about my illness almost all the time so having everyone discuss it with me all the time is just exhausting.
I'm trying to control the flash of fangs and temper, and snarky comments like, "yeah so I'm not handling this well, hmmm, next time you're terminally ill, I'll take notes as you show me the proper way to behave." I hope you'll forgive me if the fangs do show, and I hope you know the ire/anger/pissed is not directed at YOU - you just were an innocent bystander when my bomb of frustration at my situation went off.
I hope this gives you a better understanding of where I'm coming from. Things just come to a head and, oh look, here's this blog thing I can rant on. I think I'm just ranting into the void of the interwebs, but I forget some of you are out there reading.
A friend recently wrote in his blog, about how he can get positive comments from people who love him all day and blow them off, but one negative comment from a random stranger and he lets it ruin his week. I think we are all like that. We need to concentrate on what comes from the people we love, especially the good things, and learn to blow off the idiots.
Well, it looks like our time is up for this session. Why don't you work on that for next week, eh?
lol
Cheers and Love
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.
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