I am pretty best up with this chemo. There is a part of me wondering if it makes more sense to be in the hospital and get 4 done at a time instead of having 4 terrible weekends. On the one hand, I sleep when I am at home. On the other hand, I had IV fluids in the hospital.
I cannot really discuss the nausea right now, except to say that it is ever present. I am pretty sure that I am dehydrated. Last night, I threw up ginger ale and iced tea. I have kept down apple, melon, a handful of crackers, and half a smoothie. When I had the 4-chemo-in-a-row, I did not eat from Thursday until Sunday,and then I ate very minimally. I am eating way more, but I have been sicker.
Cancer is so awful and this chemo is exhausting. I miss being awake for most of the day. I miss walking. I have used a commode on the side of my bed because I did not have the energy to get myself to the bathroom. I feel bad for the people who have emptied it for me. Yesterday, I made an extra effort to use the bathroom ( which really involves using a walker inside of the bathroom).
I can't wait until I feel a little better. A visiting nurse is coming today. I hope she has some ideas that help.
Sunday, September 30, 2012
Friday, September 28, 2012
Post chemo
I had chemo yesterday. That wasn't the plan. I was just going for a check up. Then Dr. Rubin asked if I wanted to have 4 chemo treatments in the hospital in a row with a 3 week break or one a week. After weighing it out, 1 a week seemed better as being in the hospital is awful and means that I won't rest, despite extreme exhaustion .
So we began treatment yesterday. Luckily, my mother and baby sister were visiting me. They helped me so much! When we got back to my apartment, I did not think I could go up the steps, but I managed to do so, with several rests. Ken helped me up the stairs and Athena got my prescriptions.
Last night I felt ok. Today I feel so awful. There are drugs for pain and drugs for nausea, thank god. I wish there was a drug for anti-crappy-chemo-hangover. That'd be awesome. I haven't been out of bed yet and it is nearly 7pm.
My sister picked up my mail and read me some beautiful letters. Eric and Erin sent me some books of short stories. I had Athena read them to me. Bunky has hardly left my side, sometimes to my annoyance.
Oh, and very exciting news: my big sister had a son today, making me Aunty again. Congratulations! To her and her husband.
So we began treatment yesterday. Luckily, my mother and baby sister were visiting me. They helped me so much! When we got back to my apartment, I did not think I could go up the steps, but I managed to do so, with several rests. Ken helped me up the stairs and Athena got my prescriptions.
Last night I felt ok. Today I feel so awful. There are drugs for pain and drugs for nausea, thank god. I wish there was a drug for anti-crappy-chemo-hangover. That'd be awesome. I haven't been out of bed yet and it is nearly 7pm.
My sister picked up my mail and read me some beautiful letters. Eric and Erin sent me some books of short stories. I had Athena read them to me. Bunky has hardly left my side, sometimes to my annoyance.
Oh, and very exciting news: my big sister had a son today, making me Aunty again. Congratulations! To her and her husband.
Wednesday, September 26, 2012
So, i had a doctor's appointment on Tuesday at my primary care specialist. Is that right?
Well, the doctor I go to for everything, before the year where I needed a referral to see anyone. I am not sure why, but his office wanted me to come in. It may have had to do with being in the hospital.
As I type, there have already brn so many auto-corrects, or wrong worts. I decided that I am non going to correctèr these errors. It will be window intio my mind. I am sorry.
So, I had Kas and Jen come help. First I explained the huh plan of 1) scorching from wheelchair to stepstiup. The, I explainedrfv moving from the step nipppiik. I explained someone would be gently holding my foot by the sock, so It didn't hit the steps and so it moved with me, as I do not have much control over my left foot.after the explanation, we actually got me downstairs. I had to send Jen back pnfor a pillow that was forgotten. My friends quickly snapped the legs on and Kas steered medoodddoddpk well down the sidewalk the 2 blocks to dr B's office.
The 2 steps outside presented a challenge. I strod and got support in making it up the rrpr the firth step, but Jen picked me up and carried me in. I didn't realizieie that that's what wasnhappeknneqa. We waited a while before being called back. When the doctor came into my room, he had to wake up. Basically I verbalized the hospital discharge papers. He explained dthat he would be happy to give me prescription refills and referrals over the phone. He could hacve had this whole talk on the phone.
Afterwards, my frieds got me inside in reverse. Both Kas and Jen were thoughtful in. Ngetting me back up, though I was terribly cranky as omy leg still throbbed. I got an ice pack and napped. Emily woke me to get paperwork to drop off to HR (but that is another story).
Later my friend Hollis came over to do some powerful listening.
Ken came over bringing a calzone and a stromboli. We watched movies and I nappishly missed some parts. Afterwards, Ken shaved my head. My hair was falling
Out so much that I had bald spot and hair in all My food. Eew.
Thanks for plowing threw these eras.
Sunday, September 23, 2012
Looking good
Many friends and family members who come to see me tell me, with some surprise, that I look good. They expect me to appear more sickly after fighting cancer for 9 months. I am pretty drowsy in the moment, but I figured I would share a photo of myself with you, so that you could revise any "sickly images" of me from your mind.
Ok, it isn't the best pic, but I think it is ok to share.
Although, I am starting to lose my hair from chemo 2 weeks ago. Last time, my head-shaving party was around day 19 following chemo. I am likely to shave it again soon; I have little 1.5 inch hairs sprinkled over my pillows, towels and floor. I really don't want them in my cereal or my soup. Luckily, I was flaky about returning Rich his clippers back in February and I still have them.
Before and after pictures are going to be fairly boring, compared to before, but I will still try to share them with you.
Ok, it isn't the best pic, but I think it is ok to share.
Although, I am starting to lose my hair from chemo 2 weeks ago. Last time, my head-shaving party was around day 19 following chemo. I am likely to shave it again soon; I have little 1.5 inch hairs sprinkled over my pillows, towels and floor. I really don't want them in my cereal or my soup. Luckily, I was flaky about returning Rich his clippers back in February and I still have them.
Before and after pictures are going to be fairly boring, compared to before, but I will still try to share them with you.
Saturday, September 22, 2012
Some side effect struggles
I have a hard time with so many things. Right now, I am awake at 3 am and I feel ok writing about some daily struggles. I just woke up to pee. Last night, I peed 5 times in less than 8 hours. I haven't slept all the way through the night in months. I don't even remember what that's like.
Dry mouth is a side effect of most of the medications that I am taking. Sipping water helps, but only for a few minutes. My amazing visiting nurse suggested Biotene products and a friend picked up the gel for me. It tastes like circus peanuts and feels like a mouthful of gel. It helps, but it also makes me gag.
I have been adjusting my medications as the pain medications were all doubled the last time I was in the hospital. The doctors doubled it because chemo increased the pain, but I don't seem to need it as high right now. I am on a long acting pain killer, OxyContin, and a quick-acting pain medication, Oxycodone. They make mewfuzzy. Typically, I read with one eye closed because it is so difficult to focus my eyes. I have gotten used to seeing double, as I write these blog entries. Thank goodness for auto-correct, or you would have difficulty following my thoughts. Even so, my fingers have a tendency to "fall" or "jump" against the letters as I unspool my thoughts into words and phrases. I have spent over an hour writing a blog entry or an email of a few paragraphs.
I have an equally difficult time with writing on paper. It starts out okay, but, after a few minutes it decays. I don't recognize my handwriting; it is either cramped and tiny or the letters are wide and loose. Either way, my notes to myself are rarely useful.
I have a similar trouble with memory, logic, and other cognitive functions. At certain times of day (approximately 2 hours after taking the long acting drugs 3 times a day), I have trouble retaining conversations. Sometimes, I won't even remember that I spoke to someone. Other times, I can't remember what was said. I think sometimes people think that I am messing with them. I have many moments of being "super literal" where I have trouble understanding figures of speech.
Thinking can be so hard that I ask my helpers to not ask me to make basic decisions and to treat me like a small child at mealtime, where food is presented to me without much input from me. It is almost as important to listen to me as it can be to ignore me. My boyfriend had asked several times whether he should get me a hand-held shower head. I refused repeatedly. He got it anyway, and it seems like it will make things a whole lot easier. Lucky for me, Ken is super logical, so he can make up for my lack of skills right now. Also, I seem to remember that I used to be more logical than most before all the drugs.
As you might have noticed I stopped counting needles once it got over 100. I give myself 2 needles in my belly every day. I hate it. My belly has so many tiny dots across it, marking the last month or so.
Well, at least the hallucinations seem to have stopped.
Dry mouth is a side effect of most of the medications that I am taking. Sipping water helps, but only for a few minutes. My amazing visiting nurse suggested Biotene products and a friend picked up the gel for me. It tastes like circus peanuts and feels like a mouthful of gel. It helps, but it also makes me gag.
I have been adjusting my medications as the pain medications were all doubled the last time I was in the hospital. The doctors doubled it because chemo increased the pain, but I don't seem to need it as high right now. I am on a long acting pain killer, OxyContin, and a quick-acting pain medication, Oxycodone. They make mewfuzzy. Typically, I read with one eye closed because it is so difficult to focus my eyes. I have gotten used to seeing double, as I write these blog entries. Thank goodness for auto-correct, or you would have difficulty following my thoughts. Even so, my fingers have a tendency to "fall" or "jump" against the letters as I unspool my thoughts into words and phrases. I have spent over an hour writing a blog entry or an email of a few paragraphs.
I have an equally difficult time with writing on paper. It starts out okay, but, after a few minutes it decays. I don't recognize my handwriting; it is either cramped and tiny or the letters are wide and loose. Either way, my notes to myself are rarely useful.
I have a similar trouble with memory, logic, and other cognitive functions. At certain times of day (approximately 2 hours after taking the long acting drugs 3 times a day), I have trouble retaining conversations. Sometimes, I won't even remember that I spoke to someone. Other times, I can't remember what was said. I think sometimes people think that I am messing with them. I have many moments of being "super literal" where I have trouble understanding figures of speech.
Thinking can be so hard that I ask my helpers to not ask me to make basic decisions and to treat me like a small child at mealtime, where food is presented to me without much input from me. It is almost as important to listen to me as it can be to ignore me. My boyfriend had asked several times whether he should get me a hand-held shower head. I refused repeatedly. He got it anyway, and it seems like it will make things a whole lot easier. Lucky for me, Ken is super logical, so he can make up for my lack of skills right now. Also, I seem to remember that I used to be more logical than most before all the drugs.
As you might have noticed I stopped counting needles once it got over 100. I give myself 2 needles in my belly every day. I hate it. My belly has so many tiny dots across it, marking the last month or so.
Well, at least the hallucinations seem to have stopped.
Thursday, September 20, 2012
More pain
Tuesday was an eventful day, for me. My friend Chris came over in the morning. I forgot he was coming, so it was a nice surprise. He helped me clean the kitty litter and a few other things.
I also had physical therapy for about an hour. He suggested that I do 20 assisted ankle pumps every hour. A few hours later, my Uncle Dino and Aunt Fran came in. They used the key left in the downstairs shop to get in. We had a lovely conversation and, after a couple of hours, they left. Immediately after they left, I heard an unfamiliar melody. When I got in my wheelchair to explore, I saw Aunt Fran's phone charging on kitchen counter. I called my uncle and explained that I had her phone. I contacted friends with spare keys, and none were available. Then, Aunt Fran suggested wrapping it up and throwing it out the window.
I started wrapping it inside of plastic bags. Then I had the brilliant idea to tie a lot of string on the end, in case my throw did not clear the awning and so the phone wouldn't just get smashed in the street. I wheelchair back to my art table and pull at boxes and bags, but cannot find any string, because my brothers rearranged everything. I notice Mardi Gras beads on a lamp and decide to make them a chain. I stand up to grab everything and my aunt walked in the room. I startle and guide myself to land on the sofabed. Apparently, she reached into the mail slot and took out the keys giving access to my door. She retrieved her phone, refreshed my water, and headed out.
Ken came over later and I could lean back because my leg throbbed so much. I don't know if it was the pt exercise or stumble when became startled, but my leg has been in more pain since.
On Wednesday, my visiting nurse suggested that 1) I stop the exercises, and 2) make instructions for visitors. Today, Thursday, I see my pt again.
I also had physical therapy for about an hour. He suggested that I do 20 assisted ankle pumps every hour. A few hours later, my Uncle Dino and Aunt Fran came in. They used the key left in the downstairs shop to get in. We had a lovely conversation and, after a couple of hours, they left. Immediately after they left, I heard an unfamiliar melody. When I got in my wheelchair to explore, I saw Aunt Fran's phone charging on kitchen counter. I called my uncle and explained that I had her phone. I contacted friends with spare keys, and none were available. Then, Aunt Fran suggested wrapping it up and throwing it out the window.
I started wrapping it inside of plastic bags. Then I had the brilliant idea to tie a lot of string on the end, in case my throw did not clear the awning and so the phone wouldn't just get smashed in the street. I wheelchair back to my art table and pull at boxes and bags, but cannot find any string, because my brothers rearranged everything. I notice Mardi Gras beads on a lamp and decide to make them a chain. I stand up to grab everything and my aunt walked in the room. I startle and guide myself to land on the sofabed. Apparently, she reached into the mail slot and took out the keys giving access to my door. She retrieved her phone, refreshed my water, and headed out.
Ken came over later and I could lean back because my leg throbbed so much. I don't know if it was the pt exercise or stumble when became startled, but my leg has been in more pain since.
On Wednesday, my visiting nurse suggested that 1) I stop the exercises, and 2) make instructions for visitors. Today, Thursday, I see my pt again.
Monday, September 17, 2012
Visit with Aunt Karen & Ari
I had a great visit with my Aunt Karen and her daughter Ariane. We chatted for a while and had lunch from Fuel. My visiting nurse had apparently scheduled me for a visit, but no one had been assigned the task of coming today, with the job of giving me a shot of Neupron. When I called about it, the visiting nurse group said that she could get someone to come out a few hours later. Instead Aunt Karen was able to inject me with Neupron.
I had some sleepy moments while they were here, but after they left I have been positively nappish. I have been barely awake for hours.
Today, the buzzer to unlock my front door stopped working. I have asked my landlady to fix it. In the meantime, l have a plan. I gave my upstairs neighbor my keys in a labeled envelop to put into the mail slot on the first floor. Angela, the shopkeeper on the 1st floor, will give them to visitors to get in. Angela does not open her shop till after 12pm. If you have been planning to come earlier, please let me know.
Otherwise, I am doing well. My parents were here yesterday and were impressed with how much further I was able to walk than the previous visit. I feel pretty good. I have been alone and have had to be creative in finding ways to move medications or beverages from the kitchen to the living room.
I had some sleepy moments while they were here, but after they left I have been positively nappish. I have been barely awake for hours.
Today, the buzzer to unlock my front door stopped working. I have asked my landlady to fix it. In the meantime, l have a plan. I gave my upstairs neighbor my keys in a labeled envelop to put into the mail slot on the first floor. Angela, the shopkeeper on the 1st floor, will give them to visitors to get in. Angela does not open her shop till after 12pm. If you have been planning to come earlier, please let me know.
Otherwise, I am doing well. My parents were here yesterday and were impressed with how much further I was able to walk than the previous visit. I feel pretty good. I have been alone and have had to be creative in finding ways to move medications or beverages from the kitchen to the living room.
Saturday, September 15, 2012
Outside adventure
Today, Peg helped me scoot myself down the stairs and back into my wheelchair. It probably took us less than 7 minutes for me to go from upstairs to outside, with Peg making a trips up and down for the wheelchair, the leg rests, and our bags.
Oh, my! Being outside was phenomenal. The weather was sunny and warm, without being muggy or too hot. Peg wheeled me up to Dickinson, probably 5 or so blocks. We negotiated curb cut outs and crowded sidewalks. Then we sat outside at B2 and had some tea and cookies. Ken surprised us by meeting us there.
Ken "drove" me on the way back. We stayed on the sunny side of the week. I got to visit with Tony outside of his comic book store and Elissa outside of her Nice Things Shop.
My leg throbbed a little with the bumps on the sidewalk and ached when I got into the apartment. Peg and Ken both expected me to collapse into sleep right as I settled in my couchbed, but I stayed up for a few hours chitchatting. Peg made us dinner and we've been watching movies since then. I fell asleep frequently during one movie.
I have a few concerns about next week: I still need "babysitter(s)" to be around with me all day every day. If you are available to do this, please contact me with the day and a time slot (i.e. 11am-3pm, 2pm- 4pm, or 5pm - 7pm, whatever works for you). Last Tuesday, we beautifully scheduled folks to come every 2 hours. Some folks stayed longer; some folks had only the time committed to. It worked. We are also trying to get this working through LotsaHelpingHands.com, so you may get an email, too.
Oh, my! Being outside was phenomenal. The weather was sunny and warm, without being muggy or too hot. Peg wheeled me up to Dickinson, probably 5 or so blocks. We negotiated curb cut outs and crowded sidewalks. Then we sat outside at B2 and had some tea and cookies. Ken surprised us by meeting us there.
Ken "drove" me on the way back. We stayed on the sunny side of the week. I got to visit with Tony outside of his comic book store and Elissa outside of her Nice Things Shop.
My leg throbbed a little with the bumps on the sidewalk and ached when I got into the apartment. Peg and Ken both expected me to collapse into sleep right as I settled in my couchbed, but I stayed up for a few hours chitchatting. Peg made us dinner and we've been watching movies since then. I fell asleep frequently during one movie.
I have a few concerns about next week: I still need "babysitter(s)" to be around with me all day every day. If you are available to do this, please contact me with the day and a time slot (i.e. 11am-3pm, 2pm- 4pm, or 5pm - 7pm, whatever works for you). Last Tuesday, we beautifully scheduled folks to come every 2 hours. Some folks stayed longer; some folks had only the time committed to. It worked. We are also trying to get this working through LotsaHelpingHands.com, so you may get an email, too.
Friday, September 14, 2012
4 days of being home
I have been so happy at home. Each day, I get stronger and stronger. It's amazing. On Monday, I scooted up 2 steps on my bottom and was too exhausted to go further. Thursday, I scooted down the steps and scooted up the steps a few hours later. I did not even take a break in scooting upstairs.
Tuesday, I had a revolving set of friends taking care of me all day long. It worked perfectly.
My godmother Peggy arrived on Wednesday morning and has been supporting me tremendously. She brought a ton of food and is constantly bringing me bowls of fresh berries and plates of muenster cheese. On Tuesday, My art therapy supervisor, Mary Donald, from when I interned as an art therapist on the oncology floors at Hahnemann University Hospital also visited me. She brought food and told me about a program she started where home bound folks would receive complementary healing arts services (i.e. reiki, massage, art therapy, movement therapy, music therapy, etc.) at home. She said that she'd like to commit to visiting weekly.
Yesterday, Peggy helped me wash myself in the tub. I cried as I realized how disabled I am in that I needed help to bathe myself. I feel sad and somewhat disoriented when I look at my body and the territory is unfamiliar. My thighs are atrophied. My left breast is scarred. My belly pockmarked from twice-daily Lovanox injections. It felt good to cry and wash at the same time, to accept the "new normal" with my godmother, whom I've known my whole life.
Later, Peggy brought me to my oncologist's office for my post-hospital visit. It turned out that Dr Rubin was in surgery for herself and that one of her colleagues saw me instead. We explained about my "regular" fevers; she said that we should call the nurses if symptoms changed, like if the fever was at a different time of day or was accompanied by pain or discomfort.
Today, the visiting physical therapist, Jim, and the visiting nurse, Sister Janice, both visited. Jim observed me walked from my living room to my bedroom and back. Afterward, I was so exhausted that I slept through the rest of the session, which consisted of him entering information into an app on his phone. Sister Janice observed Peggy injecting me with Neupogen. We had a great visit.
Overall, I am doing well, though I feel like my long-acting pain drugs might be too strong for me. As I write this, I have 1 eye shut so that I can focus. Also, I seem to require a daily nap in addition to a good night's sleep. I feel humbled to live similarly to a 2 year old lifestyle, where food should appear unasked and everyone else has to disappear for nap time.
Tuesday, I had a revolving set of friends taking care of me all day long. It worked perfectly.
My godmother Peggy arrived on Wednesday morning and has been supporting me tremendously. She brought a ton of food and is constantly bringing me bowls of fresh berries and plates of muenster cheese. On Tuesday, My art therapy supervisor, Mary Donald, from when I interned as an art therapist on the oncology floors at Hahnemann University Hospital also visited me. She brought food and told me about a program she started where home bound folks would receive complementary healing arts services (i.e. reiki, massage, art therapy, movement therapy, music therapy, etc.) at home. She said that she'd like to commit to visiting weekly.
Yesterday, Peggy helped me wash myself in the tub. I cried as I realized how disabled I am in that I needed help to bathe myself. I feel sad and somewhat disoriented when I look at my body and the territory is unfamiliar. My thighs are atrophied. My left breast is scarred. My belly pockmarked from twice-daily Lovanox injections. It felt good to cry and wash at the same time, to accept the "new normal" with my godmother, whom I've known my whole life.
Later, Peggy brought me to my oncologist's office for my post-hospital visit. It turned out that Dr Rubin was in surgery for herself and that one of her colleagues saw me instead. We explained about my "regular" fevers; she said that we should call the nurses if symptoms changed, like if the fever was at a different time of day or was accompanied by pain or discomfort.
Today, the visiting physical therapist, Jim, and the visiting nurse, Sister Janice, both visited. Jim observed me walked from my living room to my bedroom and back. Afterward, I was so exhausted that I slept through the rest of the session, which consisted of him entering information into an app on his phone. Sister Janice observed Peggy injecting me with Neupogen. We had a great visit.
Overall, I am doing well, though I feel like my long-acting pain drugs might be too strong for me. As I write this, I have 1 eye shut so that I can focus. Also, I seem to require a daily nap in addition to a good night's sleep. I feel humbled to live similarly to a 2 year old lifestyle, where food should appear unasked and everyone else has to disappear for nap time.
Mr Bunky Boo Bear
I originally wrote this Monday night, but somehow saved it without posting it.
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Bunk seemed to ignore me when I came home Monday night. He seemed excited about Marcy and Ken last night, but didn't try to get pets from me. He curled up on the sofabed below my feet when I went to sleep.
This morning, Ken told me that I was whimpering in my sleep and that he didn't know whether he should wake me. He said that Bunk got up and pushed himself between me and Ken. The he started purring like mad. I sort of remember Bunky cuddling me in the middle of the night. I didn't know that he did it in response to my whimpering.
Later this morning, Bunky crawled on top of the pillows that my left leg was resting on. I got nervous about him hurting my leg and I pulled him off the pillows. He wriggled out of my arms and climbed back on top of the pillows. Again, I pulled him off and again he climbed on top of my leg again. lay on top of my sore leg. Finally I just let him settle himself on top of my leg. He lowered his body slowly and then started purring like crazy, which felt pretty good.
My leg has been so sensitive to touch that I couldn't tolerate sheets or being examined. I don't know the magic that let me tolerate the hefty Bunk, but his cuddles and vibrating purring felt good.
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Bunk seemed to ignore me when I came home Monday night. He seemed excited about Marcy and Ken last night, but didn't try to get pets from me. He curled up on the sofabed below my feet when I went to sleep.
This morning, Ken told me that I was whimpering in my sleep and that he didn't know whether he should wake me. He said that Bunk got up and pushed himself between me and Ken. The he started purring like mad. I sort of remember Bunky cuddling me in the middle of the night. I didn't know that he did it in response to my whimpering.
Later this morning, Bunky crawled on top of the pillows that my left leg was resting on. I got nervous about him hurting my leg and I pulled him off the pillows. He wriggled out of my arms and climbed back on top of the pillows. Again, I pulled him off and again he climbed on top of my leg again. lay on top of my sore leg. Finally I just let him settle himself on top of my leg. He lowered his body slowly and then started purring like crazy, which felt pretty good.
My leg has been so sensitive to touch that I couldn't tolerate sheets or being examined. I don't know the magic that let me tolerate the hefty Bunk, but his cuddles and vibrating purring felt good.
Tuesday, September 11, 2012
Home!
I am home. Yay!
Ken picked me up at the hospital and drove me home. The processes of getting into the wheelchair from the hospital bed and out of the wheelchair into the car were more difficult than I had imagined.
My cousins James and Dino Marcopul met us at my apartment. Marcy also met us there. I planned to scoot up the steps on my butt, but after trying for a few steps, I realized that I simply didn't have the stamina. Ken picked me up and carried me over his shoulder up the steps. Everyone else brought things up. I was horribly nauseous for a few minutes after getting into my apartment, but that passed. Then I settled into the sofa bed in my living room.
My brothers had been staying in my apartment for a little while and had completely rearranged all of the furniture to be more efficient with a wheelchair. It took me a little while to orient myself. I think I like it.
I have new prescriptions, basically the doctors doubled all of the pain drugs. Instead of waiting to get prescriptions, I just took the new doses with the old prescriptions. My body pretty quickly calmed down and wasn't in too much pain. I realized that I had probably been taking not enough pain drugs in the last few days because of the horrible nausea and dizziness I experienced from chemo. Pain free is awesome.
Ken and watched a movie, which means that he turned it on and I was drifting asleep before the title credits were through.
Today, Tuesday, I will be at my apartment all day. I have scheduled friends to visit.
8am: Nicole will pick up forms to fax to work
10am: Emily will pick up/ drop off prescriptions at Rite Aid
11am -1pm: Amy
1pm- 3pm: Hollis
3pm - 5pm: Tony
Bb5pm - 7pm: Nicole G.
6pm: Monica
8pm: Marcy
(when he is done at a show, Ken will come over).
I feel like I am setting up Babysitting services for myself. I didn't want to burn anyone out so I divided the job into 2 hour segments. I hope it works. Wednesday, my godmother will come and stay with me, so I won't need to set up this kind of support.
I feel better at home. No one woke me to take vitals, plus I get to play with the cat. I have also been hungry and thirsty, a good sign considering that I hadn't eaten since Thursday.
Saturday, September 8, 2012
Finished chemo for this round
Today I felt terrible, like I had a flu or a really terrible hangover. I haven't eaten all day, and sometimes struggle in sipping beverages to swallow my medications.
I am at the maximum dosage for anti-nausea meds. I really hope it stays under control all night. Also, my pain drugs seem to have been perfectly titrated. At least, pain hasn't been a tremendous problem today. Really, I have just been so exhausted that I doubt that I was up for 90 minutes straight at any point today. I am writing this with one eye closed so I can focus.
Also, in physical therapy today, I walked to the hallway and back to bed. I am supposed to come home tomorrow, but may need a blood transfusion first since my hemoglobin is already super low.
Total chemo count: 10
I am at the maximum dosage for anti-nausea meds. I really hope it stays under control all night. Also, my pain drugs seem to have been perfectly titrated. At least, pain hasn't been a tremendous problem today. Really, I have just been so exhausted that I doubt that I was up for 90 minutes straight at any point today. I am writing this with one eye closed so I can focus.
Also, in physical therapy today, I walked to the hallway and back to bed. I am supposed to come home tomorrow, but may need a blood transfusion first since my hemoglobin is already super low.
Total chemo count: 10
Friday, September 7, 2012
Pain free ish
Pain is under control! Yes, for the last few hours, I would say that I am not in pain. Coincidentally, I also have been sleeping on and off for the last few hours. I am drowsy and stretchy like a cat.
During chemo, my leg hurts extra. Last night, it hurt so much I couldn't sleep. Today, the docs changed my pain drugs again. I think that helped.
Tomorrow is my last day of chemo for this round. I may be switching to once a week. I might also have the option to have 4 in a row while hospitalized again. I actually forget if these are options or if we were waiting on something before deciding whether a slow down was ok.
I have been giving a lot of thought to the Ideal Hospital. I will write more about it later.
During chemo, my leg hurts extra. Last night, it hurt so much I couldn't sleep. Today, the docs changed my pain drugs again. I think that helped.
Tomorrow is my last day of chemo for this round. I may be switching to once a week. I might also have the option to have 4 in a row while hospitalized again. I actually forget if these are options or if we were waiting on something before deciding whether a slow down was ok.
I have been giving a lot of thought to the Ideal Hospital. I will write more about it later.
Thursday, September 6, 2012
Day 2 of sarcoma chemo
My leg hurts more during chemo, but less afterward. Today when I woke up, I noticed it wasn't burning hot, but felt like my healthy leg, temperature wise.
I slept decently last night, except for being woken to have my vitals checked at 4;30 am and having trouble returning to sleep. I switched to pajamas which are more comfy and less tangly than hospital gown. I slept for hours this afternoon during chemo. I am so exhausted that I imagine I will sleep fine tonight.
I don't have much to add. I am always tired. I am terrible on the phone. I have difficulty focusing and sometimes fall asleep during the conversation. Please text or email me instead. Or, if you need updates, ask my brothers or Ken or Marcy. I don't know what the cumulative effect of 4 days of chemo is, but day 2 felt extremely exhausting. I also seem to have "micro dreams" when I blink while talking to staff. I have limited who can come see me in the hospital in this wacky state. There will be plenty of time to visit when I get home.
I am excited to get better.
I slept decently last night, except for being woken to have my vitals checked at 4;30 am and having trouble returning to sleep. I switched to pajamas which are more comfy and less tangly than hospital gown. I slept for hours this afternoon during chemo. I am so exhausted that I imagine I will sleep fine tonight.
I don't have much to add. I am always tired. I am terrible on the phone. I have difficulty focusing and sometimes fall asleep during the conversation. Please text or email me instead. Or, if you need updates, ask my brothers or Ken or Marcy. I don't know what the cumulative effect of 4 days of chemo is, but day 2 felt extremely exhausting. I also seem to have "micro dreams" when I blink while talking to staff. I have limited who can come see me in the hospital in this wacky state. There will be plenty of time to visit when I get home.
I am excited to get better.
Tuesday, September 4, 2012
Too many needles
I have been having trouble sleeping at night in the hospital. Tonight, I asked for ambien to help me sleep. About an hour or so later, I was woken up to have my vitals measured. Turns out, I had a fever of 102. The aide told my nurse who contacted one of the residents on my case. She ordered the same tests from the day before: 2 sets of bottles filled with blood from 2 different sites (to prevent false positives) and another urine analysis.
I became upset as my nurse starts looking for my veins. She finds one and quickly fills the bottles. One set done, one more to go. The next vein is harder for her to find but eventually I feel the pinch of the needle. Then I feel the needle squirm and wiggle. I am having a hard time with these sensations and the nurse pulls out the needle. She finds a third spot on my arm and I feel the pinch of the needle. Then I feel the pressure from the nurse pushing the needle into the being. Blood isn't coming out. She calls another nurse who also has trouble getting blood. They pull out that needle. I ask for a break before continuing. The nurse tells me that they will have to do the testing with just one set of bottles. Yay! I am frustrated and upset, but at least I am not being stuck with more needles.
Needle count: 101!
This is depressing. I miss feeling better, being healthy.
I became upset as my nurse starts looking for my veins. She finds one and quickly fills the bottles. One set done, one more to go. The next vein is harder for her to find but eventually I feel the pinch of the needle. Then I feel the needle squirm and wiggle. I am having a hard time with these sensations and the nurse pulls out the needle. She finds a third spot on my arm and I feel the pinch of the needle. Then I feel the pressure from the nurse pushing the needle into the being. Blood isn't coming out. She calls another nurse who also has trouble getting blood. They pull out that needle. I ask for a break before continuing. The nurse tells me that they will have to do the testing with just one set of bottles. Yay! I am frustrated and upset, but at least I am not being stuck with more needles.
Needle count: 101!
This is depressing. I miss feeling better, being healthy.
Battle plan for destroying Sneaky
Dr Rubin, my oncologist, just came into my hospital room and explained her plan to me. I will be getting chemo in the hospital for 3 days straight to shrink Sneaky, the tumor in my leg. Then, we will continue on a more spaced apart way. We don't have a plan for total number of treatments. We are hoping to shrink it to oblivion, like we did with breast cancer. After chemo, we will likely have radiation and surgery, though that's not definite and may relate to how badly we destroy Sneaky.
At the end of that, I will be getting a dosage of Herceptin, a protein that inhibits the growth of the kind of breast cancer that I had. I am past due for Herceptin. I was supposed to get it last week, but was in the hospital.
I feel like I am entering this terrible battle for my life and my leg. I am assembling an army to help me. I have Dr. Rubin and Dr. Lackman directing and coordinating the attacks. I have my other doctors aiming the big guns and the nurses loading them up. I need other help from you.
If you pray, please pray that chemo destroys this sarcoma.
If you practice Reiki, please send some to me.
If you are an artist, create an image of Sneaky's demise.
If you are a musician, create a soundtrack for this epic battle.
If you can create an excellent guided imagery meditation to help me visualize the annihilation of Sneaky, please send it to me. Or come here, and guide me through it
in person.
If you are funny, make me laugh.
If you are a good listener, sit with me while I cry, but don't let me stay there long.
If you are good company, sit with me and remind me that it will be ok. Tell me about a time in the future when I forget how painful 2012 is.
If you have other magical healing gifts, please share them with me.
Needle Count: 97
I feel like we should celebrate when we get to 100!
At the end of that, I will be getting a dosage of Herceptin, a protein that inhibits the growth of the kind of breast cancer that I had. I am past due for Herceptin. I was supposed to get it last week, but was in the hospital.
I feel like I am entering this terrible battle for my life and my leg. I am assembling an army to help me. I have Dr. Rubin and Dr. Lackman directing and coordinating the attacks. I have my other doctors aiming the big guns and the nurses loading them up. I need other help from you.
If you pray, please pray that chemo destroys this sarcoma.
If you practice Reiki, please send some to me.
If you are an artist, create an image of Sneaky's demise.
If you are a musician, create a soundtrack for this epic battle.
If you can create an excellent guided imagery meditation to help me visualize the annihilation of Sneaky, please send it to me. Or come here, and guide me through it
in person.
If you are funny, make me laugh.
If you are a good listener, sit with me while I cry, but don't let me stay there long.
If you are good company, sit with me and remind me that it will be ok. Tell me about a time in the future when I forget how painful 2012 is.
If you have other magical healing gifts, please share them with me.
Needle Count: 97
I feel like we should celebrate when we get to 100!
Monday, September 3, 2012
Mystery fever
I still have a fever. The nurse took blood from 2 sites to grow cultures. She also took urine and set up an IV with antibiotics and a saline solution.
I felt better for about an hour or 2. I was grateful for my brothers and boyfriend visiting. Otherwise, I have been falling asleep on and off and reading with one eye closed for focus. I watched an NCIS marathon too.
Needle Count: 96
I felt better for about an hour or 2. I was grateful for my brothers and boyfriend visiting. Otherwise, I have been falling asleep on and off and reading with one eye closed for focus. I watched an NCIS marathon too.
Needle Count: 96
Back in the hospitali
Sunday was going along well; Jimmy helped me remember to take my pills. I followed visiting nurse's suggestion to take the short acting oxycodone every 4 hours, to avoid the sudden pain. The visiting nurse said that I seemed better than on Saturday.
My parents came over. My brother arrived from Florida. My sisters and niece also came over. We don't get me ready to leave i gets till after the guys come back with chicken and potato salad.
My leg hurt. I couldn't take more drugs for another 2.5 hours. My temperature starts off at 100.1 and is 101.2 after dinner. We called the visiting nurse group who spoke with Dr Lackman. Lackman insisted on me heading to the ER. The ER wasnot too busy and we got pushed through.
Turns out my blood counts are so low I need a transfusion. My sisters and brother have the same blood type but they would need to have already submitted it.
I have a chest X-ray, another painful ultrasound on my left leg, lots of blood analyzed and am admitted to rm. 1544.
Please call jimmy or ken or wait if you have questions.
My parents came over. My brother arrived from Florida. My sisters and niece also came over. We don't get me ready to leave i gets till after the guys come back with chicken and potato salad.
My leg hurt. I couldn't take more drugs for another 2.5 hours. My temperature starts off at 100.1 and is 101.2 after dinner. We called the visiting nurse group who spoke with Dr Lackman. Lackman insisted on me heading to the ER. The ER wasnot too busy and we got pushed through.
Turns out my blood counts are so low I need a transfusion. My sisters and brother have the same blood type but they would need to have already submitted it.
I have a chest X-ray, another painful ultrasound on my left leg, lots of blood analyzed and am admitted to rm. 1544.
Please call jimmy or ken or wait if you have questions.
Needle count : 93 = (88 + 1 lovanox + 1 port access + 1 blood draw from my wrist + 2 blood draws from inner elbow)
Saturday, September 1, 2012
1st nursing visit
Today, Janet, one of the nurses from Holy Redeemer came to visit and to check on my transition home. We reviewed my medications. I felt anxious and upset as soon as she sat with me on the couch. I cried intermittantly throughout her visit while reassured me and calmed me down.
She also observed me in giving myself the Lovanox injection. I started to hyperventilate, but she helped me calm down. I have so much panic about the needle that i may have to switch to coumadin, as it is just pills. I am not upset about the pain, but the needle itselfDuring her visit, my parents also arrived. I felt calmer then, too.
I asked my parents and brother to split some hoagies with me. It was the best meal I had had in the last few weeks.
I found out my bank account has $40 in it; I haven't received the 75% paycheck from work. I have to get this fixed. I cannot function like this. My parents kindly offered to help me with a loan.
Needle Count: 88
She also observed me in giving myself the Lovanox injection. I started to hyperventilate, but she helped me calm down. I have so much panic about the needle that i may have to switch to coumadin, as it is just pills. I am not upset about the pain, but the needle itselfDuring her visit, my parents also arrived. I felt calmer then, too.
I asked my parents and brother to split some hoagies with me. It was the best meal I had had in the last few weeks.
I found out my bank account has $40 in it; I haven't received the 75% paycheck from work. I have to get this fixed. I cannot function like this. My parents kindly offered to help me with a loan.
Needle Count: 88
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