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.

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.

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.

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.

Stitches out

Today I got my stitches out (from when Dr. Junkin took out the cyst). It felt uncomfortable, but it was okay. By the time I felt like I needed a break, I only had 1 stitch to go.  Also, I don't have to wear the immobilizer anymore. Yay!  Dr. Junkin wants me to see an orthopedic oncologist in New Jersey. He suggested that radiation might be more effective than chemo. I hope so. 

Otherwise, I had 3 very nice visits from different friends. I can't explain how helpful these visits are. I am so isolated, even in my own apartment. I will be starting physical therapy next week, also.

Today, I didn't cry at all. I may be overwhelmed and exhausted, but I can do this. Having cancer is hard, but each moment is something I can handle. Sure, it'd be so much more handle-able if I wasn't in pain, but I can't control that. I am taking a very short, minute-by-minute view of my life. I can pretty much accept or tolerate anything for a minute.

Tired and nauseous

I am recovering from yesterday's chemo. I am very nauseous and my leg really hurts. I can't get comfortable. Athena put on Monty Python and got me some egg drop soup for nourishment. I was scheduled for an ultrasound on my leg to check for blood clots, but rescheduled it because I was too nauseous. My orthopedic doctor called to make sure I knew about the sarcoma. He said it was sent to Mass General and had not been fully discerned. I have an appointment tomorrow  to get stitches out from the Baker's Cyst. I am excited to see the scar.

 I am so grief struck by this new medical adventure. I cry easily and at the smallest provocation. I am tired of having cancer and feeling sick. I am tired of not being able to walk or sit without pain. I miss walking around in my neighborhood and seeing friends. I regret that I didn't bike more last year, but I feel like I created enough awesome memories of fun times hiking in the woods, tubing down rivers, camping, biking, walking around my neighborhood, going to shows, dancing at parties, and just getting around to almost satisfy my mind. I haven't been able to focus on reading today, but maybe when the soup and drugs kick in, I will.

Back to my parents' house

I met with my orthopedic doctor this morning because of running fevers since the surgery on Friday. He undid all of the Ace Bandages on my leg: from thigh to toes. He also changed the bandages on the wound. My leg was covered in ugly bruises. Dr. Junkin said that I would need an ultrasound test to make sure that I didn't have a blood clot.

He had other news, too. Dr. Junkin said the the material from the cyst was still being studied by pathologists to discern exactly what Lumpy II was.  Dr. Junkin said that it was malignant and may be related to Lumpy or to breast cancer treatment, or be unrelated.

I know I am hiding this scary information, but I cannot absorb it right now. It's the second time this year that a doctor has told me that I have cancer cells in my body. I cried a little, but mostly I am completely exhausted.

Athena drove me back to our parents' house. The ride was rough because my leg had to be at a weird angle and her air conditioning did not work.

a brief word on my sleep cycle

My sleeping is typically ridiculously sporadic. I rest often, mostly because of the painkillers. They don't make me sleep well though. Often I fall asleep for a few minutes before waking up again, especially if I'm watching movies or television. I have no idea how much I sleep in those intervals.  Because of all these nap spurts, I tend not to be tired well until after midnight. I've habitually been awake from 3am to 4am. I usually use this time to take more painkillers, use the bathroom, and go to bed (if I fell asleep on the couch). Then, I tend to wake up for the day around 8am. If I am very uncomfortable or tired, I might take another painkiller and sleep until 10am.

Anyway, last night, I magically slept from 2am until 7am. I feel amazing. I might not go back to sleep until I'm at thedoctor's appointment.

update on appointments

I apologize for not updating more often. I didn't have internet access at home until today. I had been walking or "walking" to the coffeeshop for internet, but I haven't even been able to do that in the last few days. My leg has been worse since last week. My knee is swollen and stuck at a 90 degree angle. It is really hard to walk on. The orthopedic doctor called in a prescription for Vicodin and for Gabapentin to help with pain.

I have 5 appointments this week: 3 tomorrow. I meet with the orthopedic doctor tomorrow morning to discuss his plan for surgery. Afterwards, I meet with the hospital staff to determine any presurgery tests that they need. In the afternoon, I meet with my surgeon to review my scars from the cancer operation.

Thursday, I get my shot of Herceptin and Friday I have surgery on the cyst in my knee (finally!).

running errands with Athena

Athena has been tremendously helpful. I knew that I would feel better eating more nourishing foods, but I had no idea that I'd feel this much better! I've been eating tons of fruits and vegetables, rather than the semi-healthy frozen foods that I've been living on. I'm also trying to minimize gluten in my diet because my acupuncturist suggested that it might increase any inflammatory response that my body has. I can't afford that; my leg is so swollen, I couldn't wear pants. Luckily, it's hot and shorts are acceptable.

Yesterday, she dropped me off at Methodist to pick up my MRI report. I made a bad decision and read the report which was scary, partly because it used lots of words I didn't know and some words that I did, like neoplasm. I really don't want to have Lumpy II have anything to do with cancer. I'm done with that.

Today, Athena dropped me off at Renaissance Healing to get acupuncture and chiropractic work done. My acupuncturist did cupping on my knee to help reduce swelling. My chiropractor helped with neck stiffness that I wasn't even aware that I had until it went away.

Then Athena drove me to work where I sent out letters to all the clients whom I couldn't reach by phone. I'm not going to be working again until September. I feel a little guilty about my absence, but the families have ways to continue therapy if they are interested. Most of the families said that they'd wait for me.

After work, I dropped off the MRI report at Dr. Junkin's office. Then I hobbled across the street to my surgeon's office to get another prescription for Percoset. Athena picked it up for me.

flaming razor blade experience

I am back in Philly, after 9 days in NJ, recovering from surgery. I miss being home with my family, especially my youngest sister, Athena. Everyone helped so much. Living alone and having mobility struggles is challenging. It is hard enough to get dressed and move from my bed to the living room. It can be hard to prepare food and, sometimes, by the time I have put in the effort, I am no longer in the mood to eat.

This past weekend, I attended my cousin's wedding in Connecticut I got to see lots of cousins and other relatives. I used my drug calculus to stay out of pain (3 alcoholic drinks = 1 Percocet) and enjoyed myself.

This week, I have 3 doctors' appointments. Yay! Yesterday, I met with the orthopedic doc. I overheard him discussing my case while I was in the exam room. He said that Lumpy II was the worst Baker's Cyst he'd seen. I explained that my foot felt like it was burning all of the time and when I had weight on it, it felt like it was cut. The doctor agreed that the "flaming razor blade experience" was because of my nerves's general unhappiness. He prescribed me gabapentin to help with the pain. So far, it makes me woozy and sleepy. I don't really mind the sleepiness, though, as sleep has been challenging because of the pain. He also ordered another MRI and said that he wanted to surgically remove the cyst next week. I will have to stay overnight at the hospital. Apparently, it's harder to take out a Baker's Cyst than to perform a partial mastectomy. Who'd have guessed that? Somehow, I am more anxious about the knee surgery than I would expect.

Tomorrow I see my surgeon and Thursday I see my oncologist.

Week post surgery

It's been a week after surgery. I have been staying with my parents in north Jersey to recover. Lumpy II, the cyst, is unhappy. I think I had some nerve damage during surgery because my lower leg and foot generally feel as though they are cut and burned. I ask Athena, my youngest sister, to check it all of the time for injuries.

The other day, my mother and Athena pulled off the bandages on my breast. I was so anxious. We pulled my skin away from the tape and paused every time it began to hurt. My mother saturated my skin with A&D Ointment; the smell of it reminded me of my grandmother who used it on everything. It took about an hour to get everything off. I still have the steristrips over the stitches.

It looks like the scar is bigger than I thought it would be. I still haven't examined it too closely. My friends who have had similar surgeries reminded me that my breast will continue to look differently as it heals.

I have so much trouble sleeping. I wake up frequently with pain in my leg and occasionally pain in my breast area. I seem to try to curl up in a ball on that side of my body which doesn't work.

Recovery

I have spent most of the last 70 hours lounging in a love seat in the corner of my parents' house. My family has wheeled me to the bathroom and to the kitchen for meals.

Today I took a shower and changed my clothes. The nurse said to remove the bandages today, but I have been too nervous to start peeling off the wrap holding the gauze in place. It seems shallow, but I feel worried about what the scars look like.

My left leg is still tough to walk on. I am having some nerve stuff happening in my foot and toes. They feel like they are on fire. When I walk, the sole of my foot feels like it is walking on sharp rocks that are hot from the sun.

surgery is tomorrow

I'm feeling nervous and stressed about tomorrow's surgery. It seems like I have a ton of things to do beforehand.

I took a week off in my schedule at work, but I'm trying to cancel appointments in the beginning part of the second week, in case I'm not up for seeing people then. No one is answering their phones and it is frustrating.

My parents want me to come home with them so that they'll help me in my recovery. I will have to pack my clothes tonight. It's hard to pack because it's still really hard to walk and move around. I am trying to anticipate the things that I will need for my cousin's wedding (if I'm up for going to it). I'm also needing to pack things to study for my art therapy board certification exam.

I found a friend to take Mr. B. for the week after surgery. She has a spare key and knows where all of his stuff is. I hate to have her grab him when I'm not there, but I'm not sure how else I can make sure that he's taken care of while I'm gone.

I keep feeling like I'm forgetting something very important.

Sometimes when I'm working with anxious clients, it helps to list out the worries. Here's a list of my worries:

• I'm worried about not being able to walk or use my arm on my left side. Will I be able to use my cane if my underarm is sore from the surgery? How will I get around (even just to the bathroom)?
• I'm worried about finding out about any spread of the cancer cells into the lymph nodes, even if it's not active.
• I'm worried about how I'm going to look after surgery. What will the scars be like? What will it be like to have scars on my breast and in my underarm? How are they going to feel? What will it be like when I first see my scars?
• How long am I going to be in pain? Actually, this is kind of a silly question as I've been in pain that makes it hard to sleep for months now. I'm just tired of being in pain.

Anyway, I'm trying to keep it together. Last night, I got my nails done (as I wouldn't be able to do it for a while). At the nail salon, they gave me glasses of wine. Then I met my recently laid-off coworker-friend for a drink at the pub.

chiropractor and acupuncture

On Monday, I took a cab to my chiropractor and acupuncturist Renaissance Center for Healing Arts in Center City. I love working with this couple. I start to feel better when I walk into the lobby.

I started with Jim, the chiropractor. He reminded me that bodies like to be healthy and that everything will get better with time. He adjusted my back and neck. As he did so, my lower back started to feel very nicely warm. He said it was because the adjustment had increased the blood flow, which should help. He also showed me some stretches I could try to help my lower back and hips, as they've been sore from my limping.

Then, I saw Jackie, the acupuncturist. She put cups with suction edges against my knee, kind of like giant bowl-shaped leeches, as a way to bring down the inflammation in the knee. She also placed needles in my feet, hands, arms, ears, and scalp. I rested like that for about 10 minutes. I got very cold and shivery.When she came back in, she said that the swelling in my knee had gone down. I felt better.

It took me about an hour to get from there to work because I had to take so many breaks in stopping on the way to and from the subway. I think that the treatments were helpful, though, since I took less painkillers than I usually do.

Lumpy 2 update

I haven't really had Internet access recently. My upstairs neighbor moved out, taking wireless with her. I ordered it, but it looks like my phone lines don't work. I don't know how to solve this. Also, I am on a ton of painkillers. That's probably why I can't figure it out.

Wednesday, I went to the hospital for my knee because it had been so bad Monday and Tuesday that's couldnt sleep. As i stepped into the building, people who were waiting asked the guard for a wheelchair for me. The doctor wouldn't see me because my referral had not been completed. I waited in the lobby, half slumped and half awake. My friend joined me and we headed up (different floor) for an MRI of my breasts. There was no visible cancer. Yay! I still got a shot (for contrast dye) and had a hard time holding still for the pain in my back, hips, bones, and my left leg.

Thursday, I went back to the hospital with a friend to see dr junkin, the orthopedic dr who had aspirated my knee in hospital. He gave me a shot of lidocaine and tried to aspiratemy knee, but nothing came. He sent me for an ultrasound guided aspiration on Friday.

Friday, Ken dropped me off at the hospital and I requested a wheelchair immediately. Iwas transported to the procedures area. I was in a ton of pain. The seat of the wheelchair seemed to press to hardon my body. I couldn't get comfortable. The nurse said that I could take Percocet. I did and started to relax. The doctor aspirated 90 something cc's of fluid, about 3 ounces. Afterward, I took a nap, thanks to the pressure relief and the painkillers.

Today, I can still barely walk. I am about where I was Monday, in terms
of pain and mobility. I am very frustrated and a little nervous about how swollen my foot is. I feel bored and isolated from everyone. I would love some cheer up phone calls or messages.

Needle count: 41
(it was 34, 1 for MRI, 2 for Thursday, and 4 for Friday.)

ms crankypants

I am grumpy today. I couldn't sleep last night because I was in pain. My back, hips, and legs hurt so much that whenever I moved, I woke up. I think the pain is from neupogen, a drug that stimulates white blood cell production in my bones. According to my last bill, insurance pays $4,200 for this injection. For that much money, you'd think someone might have figured out a way for the drug to not cause pain. But I digress

I took percoset and ibuprofen before bed, then took them again a few hours later, and again a few hours after that. I propped myself up with blankets and pillows. I moved from the sofa bed, to my comfy bed, back to the sofa bed. I also used a heating pad and ice packs. Nothing seemed to work for long. My left calf hurts to the touch; even pillows or the mattress underneath it hurts.

At some point in the night, I stopped trying to sleep. Later, I stopped trying to be comfortable and started trying to feel okay with how my body was feeling. I noticed that when my body is most uncomfortable, my thoughts become uncomfortable and I think about things that I cannot do anything about, particularly in the dead spots of the night. I worry about my job, paying bills, cancer treatment, and that the pain is indicative of Something Wrong. I worry about my friends and family. I worry that bugs are coming into my apartment from the window that won't close all the way. I worry about not being able to have kids. I worry about the kids and families who come to me for therapy. I worry that I forgot something terribly important to do. Worrying isn't helpful, so I put on a Simpsons dvd and tried to stay awake through a whole episode at a time. It got lighter out and I had seen most of each episode on the dvd. I was too tired to get up to change the dvd and I was too tired to think. I sat without thoughts or moving until my second alarm went off.

I had trouble getting myself moving, both literally and figuratively. I couldn't walk very well and I wasn't very motivated to get ready for work. I also seemed to struggle with my basic morning routine. I had to sit down to dry myself after my shower because I didn't have the energy to stand. I made myself a smoothie in a cup that afterward seemed to have soap in it. I couldn't find my umbrella or a subway token. I kept dropping things that I had to leave on the floor because my body was not ok with bending down.  I took a percoset and ibuprofen before taking the bus to work.

I feel a little overwhelmed with the pain right now. I am also a little anxious about the upcoming doctors' appointments this week. Tomorrow, I have an MRI on my breasts to determine the size, shape, and location of Lumpy, post-chemo. Thursday, I meet with my orthopedic doctor regarding Lumpy II. I hope that I remember to be grateful for my health when it is fully restored. I hope I remember to enjoy weeks where I do not have any doctors' appointments. It feels like it's been forever since I've had a week that did not involve talking to a medical professional.

memorial day weekend

I had a fantastic Memorial Day weekend. I spent time on Sunday with my extended family. My cousin James picked me up from South Philly and drove me to his house in the suburbs, to save me the train ride. I wasn't sure how I would deal with walking in the train station, so that worked really well. At his house, we picked up his wife and daughter and drove to his father's place.

I got to see my parents, my sisters, and a slew of other relatives.  I had to take a nap and my father helped me walk into house. He could tell that I was in pain and said so. I felt terrible that he could tell. I have a hard time admitting that I am in pain or that I can't do something. I always say that I'm okay because I re-calibrate what it means to be okay. I try to walk as best as I can, even if it means taking a break every 50 feet. I try to not focus on the pain or discomfort. I even conceptualize the side effects as "annoying" instead of "debilitating". I'd rather be "annoyed" than "debilitated". This isn't just playing with words; if I'm annoyed, that speaks to my psychological point of view and if I'm debilitated, it speaks to my physical state. I can change my perspective, but I do not have psychological powers to shift my perception of pain.

Anyway, James drove me home to South Philly at 10 pm. He suggested that I call my oncologist because my left leg and foot were so swollen. They were about 2 inches bigger in diameter than my healthy right leg and foot. My oncologist said to go to the emergency room and get an ultrasound to rule out a blood clot. James and I were there until about 5am. There was no blood clot and the swelling was because the baker's cyst (Lumpy II) was pressing on blood vessels. Lumpy II is 8.5 cm by 4.5 cm around. I'm a fairly visual person and I like to have size equivalents. Lumpy II is bigger in diameter than a tennis ball (~6.7cm diameter) and a baseball.  The cyst is a little bigger than the size of a tuna can. To compare, Lumpy (the breast cancer tumor) was about the diameter of a half dollar when it was first measured and the size of a golf ball at it's largest.

I look forward to having the cyst drained tomorrow as well as my last chemo (ever, hopefully!) on Thursday.

my day to day

I thought it might be useful if I describe my day to day experiences.

Usually I wake up around 9am. I go to the bathroom and wash up. Then I go sit in the kitchen for a while to rest because I'm tired again. I take some ibuprofen and take my temperature.

Around 10, I get up again. Today, I cleared off the table and moved things from the kitchen into the living room. When I got there, I had to rest a little bit. I used my awesome new handheld vacuum cleaner on the massive amounts of cat hair on my sofabed for a few minutes and rested for a few minutes alternately for about 20 minutes. I only got through half of the bed, but it made a huge difference.

Then I washed up dishes that had piled up over the week. Afterwards, I rested. Then, I showered and changed. I rested for a few minutes after that, too. I put on some make up (because I look so much healthier with eyebrows) and arranged my wig.

I left my house around 11:30 and walked up the street to get some food. I'd been craving bread and butter and had some with coffee. I had to stop back at my house because it made my stomach sick.

Then, around 1pm,  I took the bus to work. At work, I see between 3 and 5 children, teenagers, and families in a day. I try to rest in between sessions, but I can't always do it. By the time I leave at 6pm, I'm exhausted waiting for the bus.

The bus takes about 45 minutes to get me home (around quarter after 7). I might pick up some take out or heat something up when I come in. I put on a movie, take ibuprofen, and try to eat at least half my food before I fall sleep, but I can't always do that. The movie-sleep is fitful while I try to get comfortable.

I usually fall asleep on my sofa bed somewhere between 11pm and midnight. I wake up around 3am because the ibuprofen and/or percoset has worn off by then. I sometimes watch a movie again, read, or sketch for a few hours before I fall back to sleep.

Antibiotics and a mystery infection

I am exhausted. I went to the chemo doctor today because the nurses insisted because of my fevers. The doctor prescribed me antibiotics "just in case" and wants me to continue to monitor my temps. The nurse took a ton of blood to check of infections. I lost another 5lbs in the last 2 weeks. I am trying to eat, but I am not hungry. I am tryin to rest, but I can't get comfortable.

needle count: 30
touch count: 16