Friday, February 19, 2010
Day by day it feels as if I am falling into a new routine, and that I am starting to adjust to a new lifestyle which includes exclusively wearing hoodies and elastic waist pants. The past week has been a bit rough, didn't really feel I "bounced back" as easily after the 2nd round of treatment compared to the first.
The Nuelasta shot that I have to take on day 7 is EVIL, and you can put a price tag on it of around $7,000 (for one shot!). The intent is to keep my white and red cells up in case I get a fever or infection. However, the shot also results in the most excruciating bone pain I have ever experienced...enter percocet. The pain lasts around 90 hours (believe me I count) and than starts to wane, so I started to feel better this morning. When I was little I loved to play make believe, and would assume the roles of a Librarian, grocery clerk, princess....now I play make believe pharmacist. With vitamins included I probably take around 15 pills a day. I have started to get creative with it, mix and match, know that if I take prednisone (steroid), I'll probably have to take an ativan later in the evening to sleep, percocet requires massive doses of Milk of Magnesia and Miralax. The whole medication regimne is very yin and yang, with hope of balance resulting in a happy smiley sarah and not bitchy and pouty sarah. Although, bitchy and pouty can be fun too!
This next week will be pretty significant in terms of treatment planning. On Monday I'm scheduled for a Echo (heart scan) and a pulmonary function test. I received a call from the cardiologist's office yesterday to schedule a consult "regarding heart failure". I almost flipped my lid. It turns out I have a lower than normal ejection fraction in one of my valves, which means that a lower percentage of blood cells are ejected with each pump than normal. After the wonderful cardiology nurse reassured me that my heart wouldn't just stop beating, we scheduled the appt for late March. Right now it just seems like something the docs are keeping their eyes on, especially since one of my chemo meds adryomiacin has been known to cause long term heart effects. On Tuesday, I'll have my PET scan. In cancer speak, the results will either be "clean" or "dirty". A clean scan means that I am in complete remission, and I will start with 4 to 6 cycles of out patient chemo. A dirty scan is evidence that there is still evidence of hodge, and I will need to more cycles of escalated BEACOPP (inpatient) before I start outpatient chemo. So when you are thinking of me next week NO dirty thoughts people...although I know it may be harder for some of you. :).
My next round of chemo will start next Friday, and as of now I don't know what it will look like. So in between appointments and blood draws I have tried to assemble something that reflects "normalcy" . This week I had lunch with my supervisor from work. They have been amazing in how they have worked with me throughout all of this, and I am sooo greatful that I will have my position to go back to when I am on the mend. Family Homestead is good people! Melanie preforms at her last Boulder High Basketball game tonight, I and I am looking forward to that...go panthers. Also, my Aunt Bonnie is arriving on Saturday to stay for a week and help out with all the logistics for next week. It will be great to see her again. I want to thank everyone again, and again for their wishes, cards, gifts, and thoughts. Knowing that there is so much love out there really brings smiles to my face, even on my bad days. Sorry if I haven't been able to get back to each of you, but know that I send my love as well.
The Nuelasta shot that I have to take on day 7 is EVIL, and you can put a price tag on it of around $7,000 (for one shot!). The intent is to keep my white and red cells up in case I get a fever or infection. However, the shot also results in the most excruciating bone pain I have ever experienced...enter percocet. The pain lasts around 90 hours (believe me I count) and than starts to wane, so I started to feel better this morning. When I was little I loved to play make believe, and would assume the roles of a Librarian, grocery clerk, princess....now I play make believe pharmacist. With vitamins included I probably take around 15 pills a day. I have started to get creative with it, mix and match, know that if I take prednisone (steroid), I'll probably have to take an ativan later in the evening to sleep, percocet requires massive doses of Milk of Magnesia and Miralax. The whole medication regimne is very yin and yang, with hope of balance resulting in a happy smiley sarah and not bitchy and pouty sarah. Although, bitchy and pouty can be fun too!
This next week will be pretty significant in terms of treatment planning. On Monday I'm scheduled for a Echo (heart scan) and a pulmonary function test. I received a call from the cardiologist's office yesterday to schedule a consult "regarding heart failure". I almost flipped my lid. It turns out I have a lower than normal ejection fraction in one of my valves, which means that a lower percentage of blood cells are ejected with each pump than normal. After the wonderful cardiology nurse reassured me that my heart wouldn't just stop beating, we scheduled the appt for late March. Right now it just seems like something the docs are keeping their eyes on, especially since one of my chemo meds adryomiacin has been known to cause long term heart effects. On Tuesday, I'll have my PET scan. In cancer speak, the results will either be "clean" or "dirty". A clean scan means that I am in complete remission, and I will start with 4 to 6 cycles of out patient chemo. A dirty scan is evidence that there is still evidence of hodge, and I will need to more cycles of escalated BEACOPP (inpatient) before I start outpatient chemo. So when you are thinking of me next week NO dirty thoughts people...although I know it may be harder for some of you. :).
My next round of chemo will start next Friday, and as of now I don't know what it will look like. So in between appointments and blood draws I have tried to assemble something that reflects "normalcy" . This week I had lunch with my supervisor from work. They have been amazing in how they have worked with me throughout all of this, and I am sooo greatful that I will have my position to go back to when I am on the mend. Family Homestead is good people! Melanie preforms at her last Boulder High Basketball game tonight, I and I am looking forward to that...go panthers. Also, my Aunt Bonnie is arriving on Saturday to stay for a week and help out with all the logistics for next week. It will be great to see her again. I want to thank everyone again, and again for their wishes, cards, gifts, and thoughts. Knowing that there is so much love out there really brings smiles to my face, even on my bad days. Sorry if I haven't been able to get back to each of you, but know that I send my love as well.
Thursday, February 11, 2010
Welcome to my blogosphere
Round two of chemo went pretty well, and I got out of the hospital a day earlier than I did my first round. Days one and two were ok, however, by day three the chemo brain started to take over and I started feeling discouraged and would cry at the drop of a hat. However, the visits from friends and family lifted my spirits, and my mom put together a rockin' superbowl party...I think all the other chemo patients were jealous. I have read a lot about chemo and how the drugs affect the physical body, but so far I haven't seen too much on the bio-psychological connection. There has got to be something out there on this issue. I just finished reading the book "Grace and Grit" it is an amazing book written by Ken Wilber dialoging his experiences during his wife's struggle with breast cancer. Wilber is a pretty big name in the transpersonal counseling/existential Buddhism field, and has wonderful contemplative insight on how eastern philosophy and spirituality helps us to come to terms with our own mortality (a nice light read).
Good news from the labs, chest tumors are shrinking, the xrays my doc took to detect bone loss and fractures came back negative, and my blood labs have been stable. I can't help but to attribute a part of this the the recent acupuncture treatments I have been receiving. Apparently, me and my chi were not vibing. During our session yesterday my acupuncturist if I would take out my belly button piercing due to it blocking one of my meridians. Silly little thing, I barely even notice the piercing, but to get all dramatic about it...it seems just like one more piece of me to be losing on top of hair, eyebrows, autonomy. But people tell me to stay positive so I should look at what I have gained...some killer looking tracks in both arms. :)
On the agenda for today: a blood draw and Neupron shot (in the bum :( ) to keep me in menopause...whoopee!
Good news from the labs, chest tumors are shrinking, the xrays my doc took to detect bone loss and fractures came back negative, and my blood labs have been stable. I can't help but to attribute a part of this the the recent acupuncture treatments I have been receiving. Apparently, me and my chi were not vibing. During our session yesterday my acupuncturist if I would take out my belly button piercing due to it blocking one of my meridians. Silly little thing, I barely even notice the piercing, but to get all dramatic about it...it seems just like one more piece of me to be losing on top of hair, eyebrows, autonomy. But people tell me to stay positive so I should look at what I have gained...some killer looking tracks in both arms. :)
On the agenda for today: a blood draw and Neupron shot (in the bum :( ) to keep me in menopause...whoopee!
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