Thursday, March 14, 2013
So... the last 3 months were fun-filled with one emergency visit, two hospitalizations, three infections and antibiotic courses and countless weeks of nausea/vomiting/diarrhea. First the doctors blamed it on the clinical trial they put me on. Well, the CT scan showed that not only the tumor grew - so off the trial I go - but there are new metastasis forming up.
Healing tango? Dancing? What are you talking about? I can walk about two blocks, after which I need to stop and catch my breath. On the days I don't go to the hospital my daily movements are between bedroom, kitchen and couch.
Sunday, December 23, 2012
How I'm spending my December Pt.2
Saturday: I'm out of hospital. Start developing pains in lower abdomen. Vomit.
Sunday-Monday: Nothing memorable
Tuesday: Go back to hospital to do blood tests. Apparently no bleeding (good), but kidney function suddenly turns for the worse. Vomit again.
Wednesday: They put a liter of IV saline trying to "wash out" the kidneys.
Thursday: Another blood test, kidney function is even worse. A procedure is in order. Due to reasons I don't understand, if done as an outpatient, it can only be scheduled a week in advance, while if admitted to the hospital, it could be done tomorrow. I "volunteer" to be admitted. Meanwhile, I mention the abdominal and back pains and the NP suggests I get a slow-release fentanyl pain patch. I've been complaining about back pains for over a year, no one ever mentioned this to me before!
Friday: My urologist shows up and starts with "Well, you got two options..." My interest spikes, as the procedure seemed to be the only logical choice. "You can do nothing and die from kidney failure, or you can undergo this procedure". He wasn't joking! Of course, I sign up for the procedure, drugged, poked and wake up with another hole in my body and a new tube sticking out of it.
Saturday-Sunday: blood pressure is up, they try to get it down, find the drug that works, then take me off it for reasons I still don't understand.
So here I am on a Sunday night - haven't been at my own place for the last two weeks, weak and taking enormous amounts of morphine-based painkillers.
Sunday-Monday: Nothing memorable
Tuesday: Go back to hospital to do blood tests. Apparently no bleeding (good), but kidney function suddenly turns for the worse. Vomit again.
Wednesday: They put a liter of IV saline trying to "wash out" the kidneys.
Thursday: Another blood test, kidney function is even worse. A procedure is in order. Due to reasons I don't understand, if done as an outpatient, it can only be scheduled a week in advance, while if admitted to the hospital, it could be done tomorrow. I "volunteer" to be admitted. Meanwhile, I mention the abdominal and back pains and the NP suggests I get a slow-release fentanyl pain patch. I've been complaining about back pains for over a year, no one ever mentioned this to me before!
Friday: My urologist shows up and starts with "Well, you got two options..." My interest spikes, as the procedure seemed to be the only logical choice. "You can do nothing and die from kidney failure, or you can undergo this procedure". He wasn't joking! Of course, I sign up for the procedure, drugged, poked and wake up with another hole in my body and a new tube sticking out of it.
Saturday-Sunday: blood pressure is up, they try to get it down, find the drug that works, then take me off it for reasons I still don't understand.
So here I am on a Sunday night - haven't been at my own place for the last two weeks, weak and taking enormous amounts of morphine-based painkillers.
Saturday, December 15, 2012
How I'm spending my December
Tuesday: I'm supposed to start a clinical trial next week. As part of getting onto it, I undergo a CT scan. Have to drink radioactive barium contrast solution, that messes up your digestion for hours.
Wednesday: I try a new soup from ABP. By the end of the day my whole GI track is moving like a drunk sailor. What's going out of me has a strange dark black color, I blame it on the yesterday's barium and today's soup.
Thursday: At tango, I dance two songs and literally run out of breath. Have to stop and sit down. My back starts hurting, I ask somebody for a painkiller, joking that it's "that time of the month" for me. Stupid
Friday: I'm getting home, walking up from Harvard Sq station to the bus stop. At halfway have to stop for 5 minutes to catch my breath, unable to move. Blame myself for not using the elevator.
Saturday: I walk up to the 2nd floor and run out of breath. Spend most of the day laying down on the couch while my son is playing around me.
Sunday: I feel better, we go out, at night I go out to tango. Have to dance one tanda - sit out two, but it kind of works.
Monday: Day -1, I have to go do a blood test. Come back, spend the rest of the day on the couch with a laptop.
And here the fun begins!
Monday night: my oncologist calls me - the test shows hematocrit dropped so much it indicates about a liter of blood lost. I realize the black stuff on Wednesday might not have been soup. She tells me to get to the ER immediately, which I do, munching on a banana on the way.
The ER folks are wonderful - within minutes of admittance I'm propped up, the port is accessed, another IV site is created, the tests are done and they start the blood transfusion. Two bags and they let me sleep.
Tuesday: Somebody tells me GI will probably want to do a colonoscopy and will probably want me to drink the gut-cleansing prep. In the meanwhile, I'm not to eat anything, sustaining on just an IV bag of dextrose solution.
Tuesday late afternoon: finally a GI doc shows up, says he'll do a scope tomorrow. No prep to drink, since I'm pretty clean as it is. Clear liquids only, nothing by mouth after midnight.
Wednesday - no food, no water. That Monday banana now seems pretty good. Finally, around 3PM they finally bring me to GI area. Colonoscopy finds nothing in the large intestine. Finally, I can eat! By the end of the night hematocrit drops again. Another transfusion.
Thursday - wasting my time in the hospital, finally the docs come with a new plan. They will do another test, coming from the mouth through the stomach into the small intestine. If they find the source of the bleeding, the radiologist can burn it shut with his magic rays. I realize that either with the bleeding or with the radiation treatment I am not going to go on the clinical trial. The test is scheduled for Friday, nothing by mouth after midnight again.
Friday - Fasting most of the day, finally a test. I ask the GI doc why didn't he do this test on Wednesday right after the unresultful colonoscopy. Well, he shrugs, we didn't think of it right away. Of course, the test reveals nothing.
Saturday - I'm finally out of hospital. Kicked out of the clinical trial, still with a potential to bleed, not knowing what will happen next.
TL;DR version:
Wednesday: I try a new soup from ABP. By the end of the day my whole GI track is moving like a drunk sailor. What's going out of me has a strange dark black color, I blame it on the yesterday's barium and today's soup.
Thursday: At tango, I dance two songs and literally run out of breath. Have to stop and sit down. My back starts hurting, I ask somebody for a painkiller, joking that it's "that time of the month" for me. Stupid
Friday: I'm getting home, walking up from Harvard Sq station to the bus stop. At halfway have to stop for 5 minutes to catch my breath, unable to move. Blame myself for not using the elevator.
Saturday: I walk up to the 2nd floor and run out of breath. Spend most of the day laying down on the couch while my son is playing around me.
Sunday: I feel better, we go out, at night I go out to tango. Have to dance one tanda - sit out two, but it kind of works.
Monday: Day -1, I have to go do a blood test. Come back, spend the rest of the day on the couch with a laptop.
And here the fun begins!
Monday night: my oncologist calls me - the test shows hematocrit dropped so much it indicates about a liter of blood lost. I realize the black stuff on Wednesday might not have been soup. She tells me to get to the ER immediately, which I do, munching on a banana on the way.
The ER folks are wonderful - within minutes of admittance I'm propped up, the port is accessed, another IV site is created, the tests are done and they start the blood transfusion. Two bags and they let me sleep.
Tuesday: Somebody tells me GI will probably want to do a colonoscopy and will probably want me to drink the gut-cleansing prep. In the meanwhile, I'm not to eat anything, sustaining on just an IV bag of dextrose solution.
Tuesday late afternoon: finally a GI doc shows up, says he'll do a scope tomorrow. No prep to drink, since I'm pretty clean as it is. Clear liquids only, nothing by mouth after midnight.
Wednesday - no food, no water. That Monday banana now seems pretty good. Finally, around 3PM they finally bring me to GI area. Colonoscopy finds nothing in the large intestine. Finally, I can eat! By the end of the night hematocrit drops again. Another transfusion.
Thursday - wasting my time in the hospital, finally the docs come with a new plan. They will do another test, coming from the mouth through the stomach into the small intestine. If they find the source of the bleeding, the radiologist can burn it shut with his magic rays. I realize that either with the bleeding or with the radiation treatment I am not going to go on the clinical trial. The test is scheduled for Friday, nothing by mouth after midnight again.
Friday - Fasting most of the day, finally a test. I ask the GI doc why didn't he do this test on Wednesday right after the unresultful colonoscopy. Well, he shrugs, we didn't think of it right away. Of course, the test reveals nothing.
Saturday - I'm finally out of hospital. Kicked out of the clinical trial, still with a potential to bleed, not knowing what will happen next.
TL;DR version:
- Carpe diem
- ER folks are heroes
- GI docs - not so much
- ABP soups suck!
Tuesday, May 15, 2012
What is a difference between 2.5..3 and 5 cm? One would think it's pretty negligible, what's a couple centimeters? But when it's your tumor dimensions you understand that the volume actually increased fivefold and that's a good enough reason for your oncologist to stop chemo. Sometimes I wish I didn't understand mathematics...
Wednesday, March 28, 2012
¡O, Gnat! at Boston Alternative Milonga this Sunday
¡O, Gnat! is playing this Sunday, April 1st - no fooling! - at Boston Alternative Milonga.
The milonga starts at 7 PM, our 9-10 PM set closes the night.
Location: New England Tango Academy
620 Cambridge St., Cambridge, MA 02141
If you are on Facebook, please RSVP here
Location: New England Tango Academy
620 Cambridge St., Cambridge, MA 02141
If you are on Facebook, please RSVP here
Monday, March 26, 2012
Saturday, March 24, 2012
I'm a failure... not!
Health - first, I'm a failure. I failed a clinical trial, so that the drugs with the cool names of GDC-0973 and GDC-0941, while giving me acne, diarrhea and nausea, were not able to cure me. Well, then we tried something conventional unconventionally... According to the current ASCO guidelines, cetuximab does not work on KRAS-mutated tumors, period, end of story. Of course, cetuximab is expensive, so profit-driven insurance companies won't pay for the treatment that shouldn't work. However, thanks to Mr.Romney's CommonwealthCare and this one publication my oncologist and I got hope that my codon 13-mutated tumor might actually respond. And it did! My marker went down by the factor of 3x.
I'm super happy and took a week off chemo to celebrate. First, I played in the Boston Tango Jam. The next day ¡O, gnat! had a big concert And now I'm in beautiful Holyoke attending workshops with the wonderful Nick and Diana. Mark your calendars for April 1st! ¡O, gnat! will be playing a huge concert at Boston Alternative Milonga!
I'm super happy and took a week off chemo to celebrate. First, I played in the Boston Tango Jam. The next day ¡O, gnat! had a big concert And now I'm in beautiful Holyoke attending workshops with the wonderful Nick and Diana. Mark your calendars for April 1st! ¡O, gnat! will be playing a huge concert at Boston Alternative Milonga!
Subscribe to:
Posts (Atom)