Hey there.
Things are going fairly well right now. My hospice nurse visits once a week to check up on me. I'm on a long-acting pain killer now, which has made a big difference because the pain baseline doesn't dip up and down all the time - I haven't had any of my fun episodes where the pain gets away from me, and I start puking so I can't keep any anti-nausea or pain-killers down so I just spiral down into pain and dehydration until I go to the ER two days later and get fixed up. By the way, I don't have to go to the ER anymore if that happens. The hospice will come out and give me shots and stuff to get me back on track, no questions asked, and especially no 2 or 3 hour wait as they try to figure out if I'm just drug seeking.
I'm sleeping a bit more, but that's to be expected. And they prescribed me some speed for if I need to be awake and obnoxious. I'm also finally eating mostly normally again, with all the chemo out of my system and the pain under control. I'm still losing weight just not as fast. For those of you who haven't seen me in a while - last June I was about at my heaviest at 254 lbs, and my last weigh-in I'm at 168 lbs. Even though I've been a frustrated dieter and active and eating healthy most my life, I don't think I've weighed this little since high school. Not a diet plan I'd recommend. Cancer sucks.
I'm still ambulatory and even take the dog for short walks. Long-day events are starting to require a wheelchair, as the lower tumors have spread into my groin muscles and it irritates the absolute shit out of them if I walk fast or a lot. It ends up feeling like I have a dual, heavy groin sprain. I had my first trip through the grocery store in one of those disable carts last week - it was embarrassing (kind of, nice to have it and not get so tired, but embarrassing).
Just rays of sunshine today, huh? Sorry but people seem to want to know this stuff but don't want to ask. My wound is still open and draining, but seems stable. That's another great thing about hospice, I don't have to drag myself up to LDS wound clinic once a week to get it checked anymore. I really like the peeps at the wound clinic, it's just far away, and tires me out, and takes up half a day of somebody's time to take me.
We're still waiting on the day when baby Thor is born - he's not due until the middle of July tho. My sister is worried because he apparently is his daddy's boy and she'll have to give birth to a big cow-headed baby. He's measuring about a week ahead in growth overall, but 4 weeks ahead with his head. But the cutest thing is when they did the last scan, in profile you could see he had lots of hair and it was all smeared up into a mohawk.
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.
1 comment:
I've been looking at that ultrasound picture, and I hope my kid really does have hair and it's not some horrible ridge down the middle of his head!
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