Thursday, September 25, 2008
If It's Tuesday, I Must Be Bulgin'
I put off having a paracentesis until this week because it didn't seem so bad last week. By last Thursday I was feeling pretty uncomfortable. So I arranged it for Tuesday, which at least had me on the same day as infusion (only one day at the hospital) but I wish I had goon sooner!
Man, do I feel better.
At my regular appointment, I found out that my tumor markers are nearly half what they were (Yay, Gemzar). No word yet on the ctc test, which has to be sent out for analysis. The last number I saw (in August) was alarming in light of the "key" below on the sheet, which indicated when ctc is used for prognostic purposes, any number higher than 5 indicates overall survival of 4.1 months. My number was 19. I have exceeded the "prognosis" by three years, so I'm not sure I can treat that number as anything more than a snapshot from a trend like the other numbers.
Months. Bah.
It wasn't enough to dampen my thrill at the other markers AND my liver counts, which are approaching normal. Maybe soon the ascites build up will slow down and I won't have to be poked and drained anymore--or at least not as frequently.
w00t!
Man, do I feel better.
At my regular appointment, I found out that my tumor markers are nearly half what they were (Yay, Gemzar). No word yet on the ctc test, which has to be sent out for analysis. The last number I saw (in August) was alarming in light of the "key" below on the sheet, which indicated when ctc is used for prognostic purposes, any number higher than 5 indicates overall survival of 4.1 months. My number was 19. I have exceeded the "prognosis" by three years, so I'm not sure I can treat that number as anything more than a snapshot from a trend like the other numbers.
Months. Bah.
It wasn't enough to dampen my thrill at the other markers AND my liver counts, which are approaching normal. Maybe soon the ascites build up will slow down and I won't have to be poked and drained anymore--or at least not as frequently.
w00t!
Labels: ascites, Gemzar, liver, paracentesis, tumor marker
Tuesday, July 01, 2008
Brain Update
I'm not bent on world conquest to the degree that the Brain is, but I have the same pale noggin and bags under my eyes. I think that's as far as the comparison can really go (unless somebody wants to make a crack about my shortness of stature). Brain may have been experimented on and possibly gets lots of shots, but I'm pretty sure they don't have to give him little tiny mouse MRIs. I got good news about my recent brain MRI: The scan shows no new lesions, and the existing ones are reduced in size. Brain mets do not automatically go away; once they're killed, they either can sit there, inert, for quite a while, or sometimes they get reabsorbed by the body and disposed of.
At my appointment today it was decided to delay my next paracentesis until Monday so as to not do it too early--Brian and I are leaving for New York to visit his brother Scott and the various nieces and nephews for the Fourth of July. I also found out my liver function numbers are improved, and that I would be getting infused today. I had to walk over to "Med Inn" which is actually a hotel in the hospital for out of town patients and family which has treatment areas that are semi-private and they had a strolling massage-giver offering foot or back or neck rubs or whatever. They don't do that at regular infusion! And regular infusion is always out of bagels.
Since the swelling in my brain is down and my cognitive function seems pretty much normal, I can set aside my fears I was going to end up incoherent and illogical as Brain's cohort, Pinky. I hope no more pesky lesions crop up. "Pinky, are you pondering what I'm pondering?"
"I think so, Brain, but where are we going to find men's underpants that fit?"
Labels: brain metastases, brain scan, Brian, Gemzar, liver, MRI, paracentesis, vacation, Zometa
Tuesday, June 24, 2008
I've Got You.....Under My Skin....
"Ascites" is a term used to describe pockets of fluid buildup in the abdomen, usually as a result of an improperly functioning liver.
I've been losing weight due to my appetite issues, but my belly is huge and round. I must look like Tik-Tok of Oz. My arms are particularly scrawny. I've almost got bony shoulders, which seems bizarre. My parts are all supposed to be soft and squishy. My belly in particular should squoosh nicely, but it's all taut with fluid.
I've been getting fluid buildup in my legs and feet, but edema is something that rather suffuses the tissue and makes it sort of like a wet sponge. I deal with that by wearing my thigh-high compression stockings (which, by the end of the day, leave me with "muffin-tops" on both legs)--the black ones are particularly sexy.
Ascites are actually pockets of fluid that can be drained. Since my belly was sounding like a ripe watermelon when thumped, I had an appointment last Wednesday to get the stuff sucked out (paracentesis), and I was rather upset at the prospect of giant sucky needles. So I asked if taking a "happy pill" would be out of the question. It wasn't, so I showed up at the hospital with Brian and my friend, Xanax.
The technician or doctor or whatever she was first did an ultrasound to locate the most likely entry point, which was determined to be on my lower left side. Advising me to not look at any of the equipment, first they gave me a shot of a local anesthetic. The needle would go in a little bit, inject something numbing, go in a little more, inject more numbing stuff, etc. Then the next thing I knew, a plastic straw was sticking out of my belly, which they hooked up to some tubing and then they connected the tubing with a bottle that was empty and vacuum-sealed.
The bottle started to suck away and filled up with an unholy greenish liquid. A second bottle was hooked up, but the suction petered out after a bit. They thought perhaps if I tilted on my side, the liquid on my right side would slosh over and get picked up. No such luck, so they unhooked the bottle and started pulling out more fluid with a GIANT syringe.
It was two and a half liters, well short of the 5 they said was that day's potential maximum. Subsequent taps might take as much as 8 liters. Ack! I felt soooooooo much better that afternoon that Brian and I celebrated at Longhorn.
Alas, by Friday I was feeling bloaty again. I'm not as uncomfortable as I was before the procedure, but I've been scheduled for another on this Thursday. Friday I will finally have a brain scan (MRI).
In other news, my various counts are no worse than last week, some are slightly better, which will hopefully be the trend. My white blood cell counts were very low, however, and Dr. Hayes and Lita decided not to treat me with Gemzar today. The plan is to instead try an every-other-week schedule, hopefully giving my blood counts time to recover. (I neglected to bring up the subject of Neupogen, which is the devil and hurts like a mofo...if waiting a week will help my white blood cells recover, I'm not going to volunteer for stinging agony.)
I've been losing weight due to my appetite issues, but my belly is huge and round. I must look like Tik-Tok of Oz. My arms are particularly scrawny. I've almost got bony shoulders, which seems bizarre. My parts are all supposed to be soft and squishy. My belly in particular should squoosh nicely, but it's all taut with fluid.I've been getting fluid buildup in my legs and feet, but edema is something that rather suffuses the tissue and makes it sort of like a wet sponge. I deal with that by wearing my thigh-high compression stockings (which, by the end of the day, leave me with "muffin-tops" on both legs)--the black ones are particularly sexy.
Ascites are actually pockets of fluid that can be drained. Since my belly was sounding like a ripe watermelon when thumped, I had an appointment last Wednesday to get the stuff sucked out (paracentesis), and I was rather upset at the prospect of giant sucky needles. So I asked if taking a "happy pill" would be out of the question. It wasn't, so I showed up at the hospital with Brian and my friend, Xanax.
The technician or doctor or whatever she was first did an ultrasound to locate the most likely entry point, which was determined to be on my lower left side. Advising me to not look at any of the equipment, first they gave me a shot of a local anesthetic. The needle would go in a little bit, inject something numbing, go in a little more, inject more numbing stuff, etc. Then the next thing I knew, a plastic straw was sticking out of my belly, which they hooked up to some tubing and then they connected the tubing with a bottle that was empty and vacuum-sealed.
The bottle started to suck away and filled up with an unholy greenish liquid. A second bottle was hooked up, but the suction petered out after a bit. They thought perhaps if I tilted on my side, the liquid on my right side would slosh over and get picked up. No such luck, so they unhooked the bottle and started pulling out more fluid with a GIANT syringe.
It was two and a half liters, well short of the 5 they said was that day's potential maximum. Subsequent taps might take as much as 8 liters. Ack! I felt soooooooo much better that afternoon that Brian and I celebrated at Longhorn.
Alas, by Friday I was feeling bloaty again. I'm not as uncomfortable as I was before the procedure, but I've been scheduled for another on this Thursday. Friday I will finally have a brain scan (MRI).
In other news, my various counts are no worse than last week, some are slightly better, which will hopefully be the trend. My white blood cell counts were very low, however, and Dr. Hayes and Lita decided not to treat me with Gemzar today. The plan is to instead try an every-other-week schedule, hopefully giving my blood counts time to recover. (I neglected to bring up the subject of Neupogen, which is the devil and hurts like a mofo...if waiting a week will help my white blood cells recover, I'm not going to volunteer for stinging agony.)
Labels: ascites, Brian, Dr. Hayes, edema, Gemzar, Lita, liver, paracentesis, Xanax
Tuesday, June 17, 2008
Xeloda a Bust: now we try Gemzar
My appointments today ran rather longer than expected. The nutritionist gave me lots of sample protein supplement drinks and mixes, gave me a folder filled with nutrition information, suggested small, multiple meals per day (I think I'm going to have to make myself a schedule) and told me exactly how many calories and how much protein I should be getting to not lose any more weight.
It's a lot more than I expected.
She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.
Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.
I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?
Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.
Busy month!
It's a lot more than I expected.
She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.
Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.
I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?
Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.
Busy month!
Labels: brain scan, Brian, Dr. Hayes, Gemzar, MRI, nutritionist, ultrasound, Xeloda
Tuesday, April 08, 2008
Treatments
My treatment is being resumed, starting tomorrow.
Xeloda it is. I had a minor meltdown in the exam room today at my appointment but after going through one of those mini-boxes of useless half-size tissues, I got the reasonably good news that my liver hasn't yet imploded and that I can begin doing the pills without having to also do an infusion of Gemzar at the same time.
I have the informational packets, I have the pills, I have another am/pm pill case thing to add to my array of am/pm/middle-of-the-day pill cases, and I am ready to go.
I am so relieved.
After that my Mom took me to the new JC Penney in Canton where I did retail therapy. I got some Urban Decay eye primer and draperies! The living room will have some color soon and I ordered thermals plus got some stuff for Brian's office. It remains to be seen how much energy I will have for putting the stuff up. I still have to put the valance up in the guest room and haven't gotten around to it yet.
Brian finds my obsession with the curtains bizarre, I'm sure, but window treatments are important.
Xeloda it is. I had a minor meltdown in the exam room today at my appointment but after going through one of those mini-boxes of useless half-size tissues, I got the reasonably good news that my liver hasn't yet imploded and that I can begin doing the pills without having to also do an infusion of Gemzar at the same time.
I have the informational packets, I have the pills, I have another am/pm pill case thing to add to my array of am/pm/middle-of-the-day pill cases, and I am ready to go.
I am so relieved.
After that my Mom took me to the new JC Penney in Canton where I did retail therapy. I got some Urban Decay eye primer and draperies! The living room will have some color soon and I ordered thermals plus got some stuff for Brian's office. It remains to be seen how much energy I will have for putting the stuff up. I still have to put the valance up in the guest room and haven't gotten around to it yet.
Brian finds my obsession with the curtains bizarre, I'm sure, but window treatments are important.
Labels: Brian, Gemzar, liver, mom, Xeloda
Thursday, March 20, 2008
Hi-Ho, Hi-Ho, It's Off to Work I G---what? What NOW?
I went back to work Monday, March 10 and was happy as a clam to not only be out of the house, but to once again be useful to society. Unfortunately, by the evening my neck/chest/shoulder area began to burn and itch so badly that I cried at my appointment the next day. So I didn't have infusion--they can't treat me with chemo until the skin condition clears up; instead, I went back to the dermatologist to get more of the giant blue horse pills, many boxes of lidoderm patches, and a medication called lyrica (used to control seizures, treat nerve pain and fibromyalgia). From there, I was referred to the pain center to see about getting something called a "nerve block."
Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.
The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.
I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.
Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."
I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.
I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.
I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.
I should be grateful the skin on my puffy moon-face looks great.
The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.
The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.
I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.
So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.
Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.
The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.
I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.
Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."
I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.
I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.
I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.
I should be grateful the skin on my puffy moon-face looks great.
The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.
The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.
I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.
So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.
Labels: acne, Adriamycin, CT scan, Dr. Hayes, Dr. Sachs, Gemzar, Lita, liver, lyrica, pamelor, shingles, spleen, ultram, Xeloda
