Thursday, April 03, 2008
It's MY Sandwich!
Loopy here from a "basal ganglia stellate procedure" to help knock out my post-herpetic neuralgia. I may have to do this several more times. Sadly, after the procedure today I can't really talk or swallow, so taking my mom to my favorite deli was great for her, but my sammy is in the fridge, uneaten. I hope Brian doesn't eat it.
Also, my goal is to be taking fewer medications, but the pain doctor wants to increase the Lyrica, which is one of the ones that has a drowsiness warning on the label. I'm never going to be able to drive again. Blargh.
Also, my goal is to be taking fewer medications, but the pain doctor wants to increase the Lyrica, which is one of the ones that has a drowsiness warning on the label. I'm never going to be able to drive again. Blargh.
Labels: Brian, lyrica, mom, shingles, Zingerman's
Tuesday, March 25, 2008
Yay! Hospital Food!
I went to the clinic on Friday and got to speak with the nurse practitioner who is Lita's counterpart. I believe she tried to give me good information and assistance, but I don't think I will consent to speak with her again unless Lita has been hit by that mythical bus that's just aiming to kill everyone. I felt things were going fine until she asked me if I had ever had a conversation about ceasing treatment.
Huh? Why the would I be calling asking about my symptoms and trying like heck to get back on chemo if that were the case? Why would THIS be the time to be having such a discussion? I was very upset and later, extremely angry that she would say such a thing to me. She doesn't KNOW me. Perhaps she was attempting in some clumsy way to bring up the notion of advance directives, but I've already gone through that with other people and it's not her business. I don't know to whom I can complain about this, or maybe I should just let it go.
Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.
Sigh.
I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.
I refused the third "evaluation."
Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.
I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.
I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.
Huh? Why the
Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.
Sigh.
I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.
I refused the third "evaluation."
Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.
I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.
I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.
Labels: Brian, Decadron, hospital, Joyce, Lita, mom, MRI, radiation, Roger, shingles, spine
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
Tuesday, March 11, 2008
Killer Itch: or, how I wish I could totally scratch my skin off
The blisters on my neck are mostly gone, the redness is gone, I look better, but the itching just won't stop. The cream the dermatologist gave me doesn't help, and I've already completed the course of anti-viral medication. It is driving me to distraction and I may have to start going around naked just to keep anything from irritating my neck and chest.
I just wanted to give y'all advance warning.
Hopefully I can get this resolved without resorting to such drastic measures.
I just wanted to give y'all advance warning.
Hopefully I can get this resolved without resorting to such drastic measures.
Labels: dermatologist, shingles
Saturday, February 23, 2008
Early but Sleep=Success!
I am slowly tapering of the decadron, which has been keeping me up at night and has made me extremely cranky during the day.
This is a relief.
My itchiness is gone; I have some dry skin where the shingles were, but that is much improved as well.
Yesterday we had a visit from a special home-program where my insurance will offer as little or as much home support as we deem necessary--this could be home nursing visits, occasional accompaniment to appointments, light help around the house, all-hours medical advice and assistance, and the social workers are helping to look into transportation options that might be a good idea for now. They were incredibly nice, and I'll be interested to see if I can actually think of stuff I'd like help with.
I like to be independent, so it's tough for me to think of things for people to come do, although if somebody wants to vacuum, I could totally get behind that!
We also went to a lawyer's office yesterday where we got help setting up some basic documents that everyone should have. This I don't like thinking about, but it's useful for people to have power of attorney and wills and living trusts and what not. I found the experience refreshingly non-smarmy, and it's good to have things arranged even if they're unpleasant to think about.
We also stopped at Zingerman's again--this time the potato salad was swiss and we got some excellent macaroni and cheese. The deli seems weird to find if you're not pedestrian, but we will make a heroic effort to take any guests there who come and visit. I swear to you, the food really is phenomenal.
Monday is my last radiation visit (for now, although the neuro-onc, Dr. Lisa Rodgers, did indicate she would speak to Dr. Hayman about whether two lesions in my spine needed to be addressed before they begin intruding with my spinal column).
Monday is also Brian and my second wedding anniversary. :D
We both failed to believe when we got married that I would get to this point. I am so very happy to be wrong. Celebration, alas, will have to wait for a day Brian is not doing his practicum at Plymouth Public Library. It's his last semester in the LIS program at Wayne State, and I'm so very proud of what he's accomplished.
We will celebrate Wednesday, I think.
We also totally forgot about Baxter's birthday on the 21st, but he'll be getting a nice, juicy bone on Sunday so maybe he won't mind.
This is a relief.
My itchiness is gone; I have some dry skin where the shingles were, but that is much improved as well.
Yesterday we had a visit from a special home-program where my insurance will offer as little or as much home support as we deem necessary--this could be home nursing visits, occasional accompaniment to appointments, light help around the house, all-hours medical advice and assistance, and the social workers are helping to look into transportation options that might be a good idea for now. They were incredibly nice, and I'll be interested to see if I can actually think of stuff I'd like help with.
I like to be independent, so it's tough for me to think of things for people to come do, although if somebody wants to vacuum, I could totally get behind that!
We also went to a lawyer's office yesterday where we got help setting up some basic documents that everyone should have. This I don't like thinking about, but it's useful for people to have power of attorney and wills and living trusts and what not. I found the experience refreshingly non-smarmy, and it's good to have things arranged even if they're unpleasant to think about.
We also stopped at Zingerman's again--this time the potato salad was swiss and we got some excellent macaroni and cheese. The deli seems weird to find if you're not pedestrian, but we will make a heroic effort to take any guests there who come and visit. I swear to you, the food really is phenomenal.
Monday is my last radiation visit (for now, although the neuro-onc, Dr. Lisa Rodgers, did indicate she would speak to Dr. Hayman about whether two lesions in my spine needed to be addressed before they begin intruding with my spinal column).
Monday is also Brian and my second wedding anniversary. :D
We both failed to believe when we got married that I would get to this point. I am so very happy to be wrong. Celebration, alas, will have to wait for a day Brian is not doing his practicum at Plymouth Public Library. It's his last semester in the LIS program at Wayne State, and I'm so very proud of what he's accomplished.
We will celebrate Wednesday, I think.
We also totally forgot about Baxter's birthday on the 21st, but he'll be getting a nice, juicy bone on Sunday so maybe he won't mind.
Labels: anniversary, Baxter, Brian, Decadron, Dr. Hayes, Dr. Lisa Rodgers, insurance, lawyer, library, Plymouth Public, shingles, Wayne State, WBR, wedding, Zingerman's
Thursday, February 21, 2008
Itching: Contained
Thank all that is holy.
Yesterday was the first day I did not feel like there were fire ants crawling on my torso.
I am also allowed to try to reduce my decadron so as to be able to sleep through the night. It didn't work entirely last night, but I did at least only wake up once. I am hoping my mood will improve, seeing as I have been extremely cranky, which can be very unpleasant to be around.
Yesterday was the first day I did not feel like there were fire ants crawling on my torso.
I am also allowed to try to reduce my decadron so as to be able to sleep through the night. It didn't work entirely last night, but I did at least only wake up once. I am hoping my mood will improve, seeing as I have been extremely cranky, which can be very unpleasant to be around.
Hair: Not Contained
Sadly, last night I did notice that the front of my hair may be pulled off in chunks, so will most likely proactively remove it all to keep myself from sprinking it all over my hats/pillowcases/places I go in public. I am aware from experience that I will not be able to keep myself from plucking at it compulsively, which has to be gross for people around me.Labels: baldness, Decadron, hair, shingles
Tuesday, February 19, 2008
Maddening Itch
The dermatologist called yesterday morning to assure me that another one of the tests confirms my diagnosis of shingles. She asked me if I had seen any "improvement" in the five or so lesions.
Yes, they have "improved" impressively: I now have what looks almost like a port wine stain wrapping around the left half of my neck, along my jaw, behind and inside my ear.
The itch is driving me to distraction. I can't scratch it, because it hurts. She called in a prescription for a topical ointment that has done squat, as far as I can tell. I get extremely temporary relief from calamine lotion, but I can't wear that stuff out and about. My clothing is uncomfortable. I get to think about the itch frequently at night as I deal with decadron-induced insomnia.
I will continue taking the stupid giant anti-viral pills, but it seems I have to mostly wait for this thing to run its course and be miserable. In the meantime, I am told to avoid being around pregnant women and babies.
There were lots of babies at Ikea on Sunday.
Chicken pox! Getcher chicken pox here!
Yes, they have "improved" impressively: I now have what looks almost like a port wine stain wrapping around the left half of my neck, along my jaw, behind and inside my ear.
The itch is driving me to distraction. I can't scratch it, because it hurts. She called in a prescription for a topical ointment that has done squat, as far as I can tell. I get extremely temporary relief from calamine lotion, but I can't wear that stuff out and about. My clothing is uncomfortable. I get to think about the itch frequently at night as I deal with decadron-induced insomnia.
I will continue taking the stupid giant anti-viral pills, but it seems I have to mostly wait for this thing to run its course and be miserable. In the meantime, I am told to avoid being around pregnant women and babies.
There were lots of babies at Ikea on Sunday.
Chicken pox! Getcher chicken pox here!
Labels: Decadron, dermatologist, shingles
Thursday, February 14, 2008
Because Brain Mets Just Aren't Enough:
Shingles, which has me crabby.
Talk about insult to injury--I've been almost unreasonably optimistic and chipper since regaining my ability to communicate. I started noticing a couple of blisterlike red spots on my neck a few days ago and thought perhaps it was a reaction to the radiation. They were uncomfortable, so I put lotion on them. Today they had doubled in number. They are irritated when anything touches them, they itch, and moving my head makes the skin stretch and become more uncomfortable.
This morning I was told three times that lotion can intensify the beams and make it worse, so it was really my fault.
The techs went to get the nurse, who went to get Dr. Hayman, who decided it might be shingles and went to get a physician's assistant, who concurred but went to call the department of dermatology to have me see them today.
The doctorlet at the department of dermatology decided it was shingles, but went to get one of the supervising doctors, who agreed completely. They then asked me if it would be ok for the medical students to come and look. I said "ok," not realizing there would be about ten of them, a few of whom wanted to poke and prod. (I hope they've already had chicken-pox.) Then I had one of the blisters scraped, and under a microscope they detected a viral load, so I now get to take--in addition to the stuff I was given for the brain thing--the most enormous dark blue pills I have ever seen in my life. Dermatology is doing follow-up tests, as well.
At least Dr. Hayman told me it wasn't related to the radiation per se (I wonder if the steroid is suppressing my immune system) since it is directed at my brain and not at my neck/chest area. What, am I under stress or something?
The good news about today is that Brian and I went to Zingerman's in Ann Arbor for some really excellent sandwiches and baked goods. I now know where to get gelato, too. Their foods all rock, and you might want to check them out. We also managed to get out of a ticket possibly by having a hospital Radiation Oncology tag hanging from the rear-view mirror.
Labels: brain metastases, Brian, Decadron, dermatologist, doctorlets, Dr. Hayman, radiation, shingles, whole-brain radiation
