In the hospital

I took a cab to chemo this morning around 11am. The waiting room was super busy. My nurses brought me back to the chemo room to check my vitals. Sam stuck my port to draw blood to check blood counts. After about an hour she sent me to the waiting room to talk to Dr.Rubin because she wanted to talk with me before chemo.

She examined my leg and said that it was much more swollen than last time she saw it. I told her about my appointment with Dr. Lind yesterday. She added that the blood in the cyst might be from a small bump that I may have not noticed. She called the vascular specialist who suggested that I be admitted to the hospital for surgery.

It took a few hours to get admitted and to be settled into a room. As they wheeled me to the elevators, we ran into Ken who had brought me snacks. After that, I met with the floor nurse, Jen, who took my vitals again. I met with the 3rd year med student who did another history of me and took my vitals for the 4th time today. I also met with the surgical team, who did another history. The resident had been on the team that had put in my port. He explained that the cyst seemed to be pressing against blood vessels and that I would need surgery for it. The cyst would refill I immediately if it was drained. He said that the surgery wold be tomorrow afternoon, but that he needed to confirm with the vascular surgeon first. I can't eat after midnight until after surgery.

The nurse just replaced the port access needle with a sturdier one, involving lots of blood. Ick.

I am at Hahnemann Hospital. Room 1576. I dont know how long i will be here or what exactly will happen. I am glad I bring so many fun things to chemo to entertain myself.

My parents said they are coming tomorrow.

Needle count: 32
Touch count: 17

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.

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

little fever

"Perhaps I had a little fever, too. One can't live with one's finger everlastingly on one's pulse."                                         Joseph Conrad, Heart of Darkness

This weekend, amidst the fun, I had a fever of 102. I called the chemo doctor's office yesterday to report it. Sam, my favorite nurse, scolded me for not calling about it on the weekend. She said that if I had any other high temperatures, I needed to call immediately. I felt bad, but it's hard to feel motivated to call in the middle of the night when I don't feel good. I live alone and I don't have anyone else who can call for me.

Last night, I didn't feel great when I came home from work. I had a temperature of 99.9. I called the nurse who left a message for my doctor. Randi, my other favorite nurse, called me today for the details. I haven't run anything high today, but I'm achy all over, I'm exhausted, and my underarms are sore. I take ibuprofen regularly, so it might be masking a fever. I'm always tired and achy though. Randi said that I need to go in first thing in the morning to get a blood culture done to find out why my temperature's been high.

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.

work stuff

My boss's boss called me today to talk about my time off. She sent someone from HR to figure out the details of my time off from work, since I do miss a number of days. I've been out 25 days since January; I try to be conservative with time off, but I'm already out of sick time for the year. Actually, I owe 3 hours of sick time. I never worked at a company before that was so precise about time off.

Sharon (from HR) suggested that I leave work early when I'm tired (which I already do). She said that I will get paid for the whole day because I'm exempt from overtime. (In the past, I've had to use sick time to leave early.) We called my boss's boss to check on this solution, but she said that she knew that I'd probably feel pressured to stay for the whole day. She proposed that I plan to come in for half days until treatment was over (in October) and that I get paid for full time. Sharon added that I still can get short-term disabilty for time off following surgery. That works out even better than I'd hoped.

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

"It's remarkable," said my doc after examining my breast. She couldn't feel the lump!! Yay! I am almost done with chemo. I only have one more to go! I see the light at the end of this tunnel, though there's still surgery and radiation to come. I am exhausted and have been sleeping on and off since I finished treatment on Thursday. I have a few new bites; maybe I do have bed bugs. The doc said something about fixing my knee, but I don't recall what it was. I fell asleep a few times during the exam. I think she was suggesting surgery for the cyst during the surgery to take out the breast lump. I could be wrong though. I'll call on Monday to find out. Also, I am having hot flashes, what with the menopause. If you know of any ways to deal with them, please let me know.



needle count: 28
touch count: 16

Chemo #5 - just before

Chemo is like taking a trip on an airplane with luxurious seats and no food service. I know I need to wear layers and bring snacks. I bring some entertainment so I don't get too stir crazy. I get anxious about coming on time. Once it begins, there's nothing to do but sit back and relax. It's going to start in an hour. Today I will find out what will happen with Lumpy 2 (bakery's cyst). I hope that they can just lance it, but I have a sneaking feeling that I might have to wait till after chemo is completely done. I hope my feeling is wrong.

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.

bedbugs!

I might have bedbugs. I don't know where from. I just have tons of bites up and down my arms, legs, back, and feet. Maybe it's a rash or a different kind of bug. I don't know.

I feel like I lost a cosmic bet.

knee MRI

Yesterday, I had an MRI of my left knee. My leg hurt to be straight for that long. I tried deep breathing and imagery, but mostly I did my best to hold still so that I didn't have to do it over and over again. I still don't really believe in MRI's.

If you haven't had one, you might not know that they are extremely loud with banging, clanging, knocking, and humming noises. It's almost like a sound effects crew is in the other room. I'm suspicious of technology that could make something that loud without also being able to use noise cancelling technology at the same time. That seems pretty silly. Most people getting an MRI are already in pain or sick with something. At the least, they are nervous that they are about to be diagnosed with something. It seems weird to add arhythmic banging to our experiences.