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.

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.

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

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.

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.

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.

awesome news

I met with my surgeon today. He said that the tissues removed during the lumpectomy and sentinel node biopsy showed NO SIGNS OF CANCER. Yay!

Cheesy Haiku:

Lumpectomy
makes it hard to sleep at night
and the scars scare me.

My chest is still sore
But I'm so relieved that there's
no signs of cancer

Also, he said that I shouldn't work until September. I'm supposed to have knee surgery next week sometime. It will take 2 weeks to recover from. After that, I'll be starting radiation and may be too tired for work.

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.

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

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

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.

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.

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

stupid chemo

I have a hard time telling people when I'm having a hard time because most people have hard times hearing about other people's hard times. I feel upset when I know that I'm creating a situation that is difficult for other people to deal with. I tend to try to help other people process their feelings; I'm a therapist, after all. I can't actually help other people process as I don't have the energy. I'm not in a position to do so.

I went to work today and was in pain. I've been having trouble with muscle cramps and bone aches in the last couple of days following chemo on Thursday. I felt frustrated that my pain was obvious to other people, because it was difficult enough to sit with my own pain, without having to watch other people helplessly watch me. 

I feel cranky and irritable. I'm a little freaked out that I'm entering menopause (because of the chemotherapy). Cancer sucks. Chemo hurts. I probably need to do some painting.

That said, I did have a wonderful weekend of sleeping ridiculous amounts and visiting with my sister and friends. Yesterday, a friend took me to see The Artist (so wonderful). I even had enough energy to go for a walk afterwards and to eat a little, before heading home. Of course, I was so tuckered out by being awake for 10 hours that I fell asleep before 9pm.

I have doctors' appointments tomorrow and Thursday to check the port and my blood counts. 

chemo

Thursday was my first chemo treatment. Since then, things have been kind of a blur. I will try to piece it together.

On Thursday, I was at the office from 11:30 am till almost 7pm. Dr R. examined me and told me about the treatment side effects. I had to wait for an available chemo chair.

Then a nurse injected the port site. It hurt. A lot. I probably would have kicked her if she was in front of me, just from reflexes. She said that it won't hurt as much next time because it would be more healed. I am getting cytoxan, herceptin, and taxotere. The nurses also gave me benedryl and dexamethasone so that I wouldn't be allergic or nauseous. Mostly I slept.  When I woke up, Ken and Nicole were there, which felt good. Ken took me to get pho and I slept for the rest of the night.

I slept most of Friday. I woke up so cold that I was shaking, despite laying in my zero-degree sleeping bag. I put on thermals and another blanket so that I could go back to sleep. My temperature went up to 100.4, so I called the doctor. My neighbor came by and made me tea. Ken brought me soup. I don't remember anything but trying to get comfortable.

I can't speak to anyone else's experience, but chemo, for me, felt like the very worst hangover ever, in the history of the world. A hangover after a night of drinking and fighting in the snow. Everything hurt. I seemed to have mystery bruises, aches, and tender spots everywhere. I felt nauseous and desperately thirsty. I couldn't seem to get warm. I was pretty cranky.

needle count: 14
touch count: 10