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.

back at work

I haven't been working a lot in the last two weeks. I was out 5/31 and 6/1 because of being in the hospital to get my knee drained. I was out 6/4 - 6/7 because of chemo and recovery. Last week, I was out 6/13 - 6/15 because of doctors' appointments related to my stupid knee cyst. Since the beginning of the month, my knee has been drained of nearly 160 cc of fluid - that's approximately: 5 oz, about the size of those little soy sauce bottles on the table in asian restaurants. Yick!

Anyway, I'm back at work and the atmosphere is weird, since we are supposed to find out about layoffs today. Great! Just what I need to make my year extra-splashy-super-exciting!

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.

Chemo #6

Chemo is done. I had #6 today. I am super tired.
Lumpy II is achy. I have to start wearing supports to help with swelling.
Also, yay! Chemo is done!
Next stops:

• Meet with orthopedic doc
• Get an MRI on lumpy
• Get a mammogram
• Based on all that, get surgery scheduled

Also, in about 3 weeks, I am celebrating.
Needle count: 35
Touch count: 18

Lumpy and lumpy 2

Lumpy 2, the cyst, did not get drained yesterday. Apparently it's full of blood, not synovial fluid. My surgeon wants me to see a vascular specialist to find out why there's blood there and how to fix it. I am pretty frustrated about it. Lumpy 1, on the other hand, is about to be obliterated by the last dose of chemo. I'd feel more enthusiastic about it when I am all done with all the aches and nausea and ickiness of chemo, in like 3 or 4 weeks.

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.

weekend fun

Saturday, I tied my cane to my bicycle so that I could attend the Italian Market Festival with some friends. I can walk about a block or so before I need to rest, but I can bike for a while before I need to rest. Coasting is helpful, too, as I can get myself toward my goal using gravity and momentum instead of muscles and joints. An old lady had words with me about the cane on my bike, but I think she was just confused about it. I mean, it is pretty strange.  I spent the day with friends. When I got home, I was running a fever. Maybe I had too much sun or not enough water or too much fun.

Yesterday, I competed with my quizzo teammates at The 2nd Annual Spring Invitational at City Tap House. We held first place from round 2 - round 4, but came in 4th after a not-so-great 5th round. We won t-shirts, though, and that has to count for something.

It's amazing what having a little fun can do to cheer me up. I hadn't gone out with a group of friends since maybe my birthday. I don't mind paying the price in exhaustion now. I'd probably be exhausted regardless.

look good, feel better

I am doing well after my last chemo on Thursday. I'm still tired, but luckily I don't have anything to do at work today, so it doesn't really matter.

Yesterday, I attended look good, feel better, a program aimed at helping women with cancer deal with the cosmetic side effects of treatment. I found out about it through my oncologist's office, though I also knew the social worker involved in it. There were only 5 other cancer patients in the group; one was close to my age and the others were much older. Two cosmetologists assisted and educated us on basic skincare and applying the fancy new donated makeup. Apparently, the lipstick that I got in my bag was worth $40. Nice! It was helpful finding out ways to make my eyebrows not look completely missing.

I also received a new wig. This one looks more like my natural hair and is long and curly at the ends. I had fun trying on the different wigs.

chemo #5 in 2 more days

I thought I might list what I do before chemo to get myself ready. I'm a little anxious about it.

I try to go outside and have as much fun as much as possible, as I might be sleeping for a few days. Tonight, I'm going to see Feist. It should be awesome.

I try to stock up on food, particularly really easy to make soups and nutrition bars. I try to minimize dairy, especially in the few days following chemo because it doesn't seem to sit ok with my stomach. I have frozen fruit, almond milk, and coconut milk for smoothies. I also stock up on cat supplies, because it wouldn't do to have to get some when I'm not feeling great.

I do my dishes and try to straighten up my place as much as I can. It's pretty much only going to get messier for the next week, so I like to start out with a minimal of mess.

I pack my backpack. Chemo takes between 4 and 7 hours; I like to have a variety of things with me to distract and soothe me. Of course, I'm likely to fall asleep most of the time, anyway.
kind of in order of importance:

• my bag, with my insurance card (in case they ask) and my debit card and ID
• subway token, cabfare, or definite ride to chemo (ok, that last one won't fit in the backpack)
• fully charged cell phone
• warm stuff (it gets chilly)
• a jacket
• scarf
• a hat
• arm warmers
• snacks
• granola bar
• cut up fruit and vegetables
• maybe a smoothie
• water, gatorade, etc.
• music (thanks, Ken!)
• lip balm and hand lotion (it's dry there)
• Lidocaine (to numb the port)
• note with new questions in it (so I don't forget to ask the doc stuff)
• sketchbook and pen (thanks, Melinda!)
• needlepoint: mandalas, thread, needle, scissors
• Kindle (thanks, Mom!)

I'm debating whether to bring my ipad. I'm pretty sure I won't have a signal there, but I might still be able to play with it. I also sometimes pack medications and such if I plan to stay at a friend's house instead of going straight home.

pink ribbons and all

I have to admit, sometimes I hate seeing pink ribbons. I see them everywhere. I see them on people's clothing. On water bottles at coffee shops. On buses. On billboards. I think I haven't gone a whole day without seeing pink ribbons.

At first, I liked seeing them. I felt like people were rooting for me, as though I were a sports team. Now, I see them and I'm reminded again that I have breast cancer, in case I forgot. I do forget, all the time. Breast cancer has been really tricky to wrap my brain around. I don't feel sick, except for the medications and treatment that I'm getting. I don't feel like I have cancer. I don't feel like I have a potentially life threatening disease at all. Sometimes, I just want to have a beer with friends or go home from work or something without having a thought my breasts or my treatment or, especially, Lumpy. Actually, usually.

Also, sometimes, I think- Wow! all that money spent on all those {posters|t-shirts|sneakers|water bottles|pens etc} could be used to help folks with breast cancer...

Sometimes, though, I feel like people are on my team.

feeling pretty lucky

I feel pretty good today. I had a fantastic, relaxing weekend of watching movies and eating hamburgers. I also had some beer yesterday to help raise money for Street Tails Animal Rescue (STAR). I won a Phillies cap in the raffle, too. I'm pretty lucky. I've won something at the last few STAR fundraisers.

This morning, I picked up a prescription for Percoset from my surgeon. Hooray!!! I am out of Percoset and would probably be having difficulty sitting right now if I hadn't taken my last one earlier. The chemo makes my bones hurt, mostly from mid-back down. It makes it hard to find comfortable ways to arrange my body. When I was getting the prescription, I talked with my doctor's extremely amazing assistant. She said that he could drain my cyst on Wednesday at his office. I cannot begin to tell you how excited I am about my knee getting better that soon.

Also, I added a page to the blog that contains a section of my thesis on optimism and physical health.

still tired

I am exhausted and achy all over. I'm having more trouble than usual eating, but I'm craving steak.  That's a good sign, no?

I haven't heard from the doc about an appointment for my cyst yet, but they said they'd call when it was scheduled.

My surgeon didn't leave a prescription for more painkillers available today, so I have to get it on Monday. I'm pretty sure I have enough for the weekend.

My boss asked me to consider working part time. I felt bad when he said it, because it means that Lumpy (and treatment for Lumpy) is getting in the way of work, too. It's getting in the way of so many things. I don't know. I am pretty tired, but I feel like I might get depressed without working, since it helps me to get out of bed those days. I know I'm not being a great therapist now, though.

I'd type more, but I'm having trouble feeling some of my fingertips, likely a chemo side effect. I guess this is the best that I can do right now.

cancer blues

I've been feeling pretty down lately. It's a combination of things. I have trouble sleeping and wake up about 4 or 5 times a night because my leg hurts. I haven't gotten my appetite back all the way since I had food poisoning, but I do try to eat. It hurts to walk and to stand. My nose is always running (yay, herceptin!). Also, I've had my period for about 6 weeks now. I have also been dealing with really stressful crazy people, and not even at work. I'm not going to get into that, but it was way too much to handle.

Yesterday, I read that 80% of children with adrenal cancer have Li Fraumeni Syndrome, which made me more upset. I had adrenal cancer as a baby and folks with LFS tend to develop cancers at a higher rate than other folks. I don't want to have to do this again. I can't think about it now. Besides, the docs are already doing genetic testing on me, though I doubt they'll find either BRCA1 or BRCA2.

I took today off from work. I wanted to do stuff with the day, but mostly I've been lounging with my knee up on pain killers. The swelling is down enough that my super comfy tall socks can fit up to my left knee, though they can go over my right knee. I walked to a coffee shop less than 2 blocks away and had to stop to rest before I got there. I hate feeling so weak and so delicate.

Oh, and I did my taxes. $0 to me. $0 to the government. Easy peasy.

food poisoning

I spent last weekend horribly sick to my stomach. It was awful. I called the oncologist Monday and came to office Tuesday. The nurses were concerned; I lost 5lbs in the previous week. They gave 2 bags of IV fluids and some antinausea medications. My doctor said that she thought that I just had food poisoning. Ugh!

Somehow, sitting in the office irritated the cyst in my knee (Lumpy II) and I've been having trouble walking since then.

The new painkillers I have tend to make my brain woozy, but don't do a whole lot for my perception of pain.

Today, I'm feeling pretty good. My digestive system seems relatively happy, finally.

I just noticed that my needle count is at 25. Wow! I think we should start placing bets on the final (as in after the last radiation appointment) needle count.

needle count: 25
touch count: 15

a few words on chemo side effects

My body hates chemo. Luckily, Lumpy also hates chemo and is going away. I'm not talking about that, right now. I'm going to complain about the ugly side effects of chemo. If you need me to be cheery and such, then you  might want to redirect your reading.

Chemo is an Occam's razor for finding out which of my cells reproduce the fastest (since they are the ones targeted by the chemo). My hair cells were affected most obviously (and over my whole body, aside from eyebrows and eyelashes). My nails are tearing and breaking; they are normally really tough to cut. All of my mucous membrane stuff is affected. For the first week after chemo, I have a fairly constantly dripping nose.I get lots of bloody noses. I'm not even going to talk about the other body parts. Suffice it to say, this stuff is pretty gross. Even worse is my digestive ickiness, since all of the cells are badly affected by chemo.

For instance, did you know you can have constipation and diarrhea at the same time? I bet you didn't! Also, nerves in my fingers are being really lazy today and only sometimes sending movement signals. I bet you can imagine how fun it is to have your fingers not really moving when you have to urgently use a bathroom. Also, I want to share the irony of anti-nausea pills that increase my nausea (at least until it starts to work).

If I just had all of these symptoms, I'd be at the doctors now. Instead, the doctor's treatment is giving me all of these symptoms. I bet, in a 100 years, people will find this treatment ridiculous or inadequate, the way we find older medical treatments. At least I wasn't born a hundred years ago, as I wouldn't have lasted this long then. Yay, for medical advances!

chemo #3

Yesterday, I had my third chemo session. I have 3 more to go.

I'm exhausted. Mom and Athena came with me to the appointment. Again, my port didn't bleed, so it needed to be flushed.

I got a shot of something to shut down my ovaries. I can't remember the last time that I had an injection in my ass. I am kind of nervous about the chemo-induced menopause. I don't really have the energy to talk about that right now, though.

The doctor says the tumor is almost gone.

Today, I walked to the post office and got a bunch of fantastic care packages. Thanks! I was so tired, a friend had to pick me up and drive me four blocks home.

needle count: 24
touch count: 14