4 days of being home

I have been so happy at home. Each day, I get stronger and stronger. It's amazing. On Monday, I scooted up 2 steps on my bottom and was too exhausted to go further. Thursday, I scooted down the steps and scooted up the steps a few hours later. I did not even take a break in scooting upstairs.

Tuesday, I had a revolving set of friends taking care of me all day long. It worked perfectly.

My godmother Peggy arrived on Wednesday morning and has been supporting me tremendously. She brought a ton of food and is constantly bringing me bowls of fresh berries and plates of muenster cheese. On Tuesday, My art therapy supervisor, Mary Donald, from when I interned as an art therapist on the oncology floors at Hahnemann University Hospital also visited me. She brought food and told me about a program she started where home bound folks would receive complementary healing arts services (i.e. reiki, massage, art therapy, movement therapy, music therapy, etc.) at home. She said that she'd like to commit to visiting weekly.

Yesterday, Peggy helped me wash myself in the tub. I cried as I realized how disabled I am in that I needed help to bathe myself. I feel sad and somewhat disoriented when I look at my body and the territory is unfamiliar. My thighs are atrophied. My left breast is scarred. My belly pockmarked from twice-daily Lovanox injections. It felt good to cry and wash at the same time, to accept the "new normal" with my godmother, whom I've known my whole life.

Later, Peggy brought me to my oncologist's office for my post-hospital visit. It turned out that Dr Rubin was in surgery for herself and that one of her colleagues saw me instead. We explained about my "regular" fevers; she said that we should call the nurses if symptoms changed, like if the fever was at a different time of day or was accompanied by pain or discomfort.

Today, the visiting physical therapist, Jim, and the visiting nurse, Sister Janice, both visited. Jim observed me walked from my living room to my bedroom and back. Afterward, I was so exhausted that I slept through the rest of the session, which consisted of him entering information into an app on his phone. Sister Janice observed Peggy injecting me with Neupogen. We had a great visit.

Overall, I am doing well, though I feel like my long-acting pain drugs might be too strong for me. As I write this, I have 1 eye shut so that I can focus. Also, I seem to require a daily nap in addition to a good night's sleep. I feel humbled to live similarly to a 2 year old lifestyle, where food should appear unasked and everyone else has to disappear for nap time.

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.

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.