Christmas vacation

I am at my parents' house with Ken. We are leaving here tomorrow to spend Christmas with his family in Wildwood.

I haven't been feeling well. I have been coughing constantly and vomiting too. I really can't breathe when I am laying down. At best, I am wheezing constantly. It is terrifying to not be getting air in.

Somehow Percocet stops the cough so there is some relief. 

A few days ago, I had physical therapy for the first time sinice the accident. I was fatigued from wearing my leg down my steps and to Ken's car, and from the car to the mat room at therapy. I explained the accident and my injuries.the therapist decided to just do stretches. As I explained the pain, the therapist said she was worried about injuries and said she wouldn't work on the leg until I had an MRI.

Friday, I saw my primary care doctor a d re-explained the accident. He prescribed me painkillers, an MRI for my little leg, and an appointment for an optometrist. He said he chest tube scar looked good.

Thank you for all of your well wishes and holiday greetings. I have been spending my time laying around, watching television and movies.

Anosmia and neighborliness

I have been a little more breathless in the last few days. I haven't been able to walk as far, but I have left my place everyday. Yay! I need to set up my pedometer to keep better track of my distances. I had no appointments last week and didn't even call a doctor's office once. How delightfully unusual for me!

I have been struggling with a lack of appetite lately. On Friday, I had a clue. I was out with friends and ordered bread pudding. Folks a few seats away exclaimed how delicious it smelled. I couldn't smell it at all. I have since not been able to smell rubbing alcohol and burning toast. Occasionally a smell gets through, but it is pretty faint to me. No wonder beer tastes so bad to me! And no wonder why everything seems so salty! I guess this anosmia is a side effect of my chemo.

I practiced cane walking with Ken on Saturday. I get tired from it quickly. It is frustrating to not get too far before I need to rest.

Today, my parents came to visit. I met them outside to save them from climbing the steps. Then we had an utterly delightful dinner at Tre Scalini, across the street from my apartment. I ate a lot. I think the complex textures and flavors helped because  I could appreciate subtle components and not just salt. Also, we ate slowly with good conversation and lots of pausing. The owners stopped by the table to say hello to me and check in with our experiences. It was fantastic!

I just ordered groceries for tomorrow. I love this system of ordering from home. i may never regularly grocery shop again. I am going to try out cooking foods with a focus on subtle flavors and textures. Maybe it will help.

After dinner, my parents showed me a bedside chest that they brought. We all have some trouble on my stairs empty handed and could not even take it out of the trunk. I asked my neighbor, who has a barber shop next door. He carried it up the steps faster than I could climb the steps on my own. At the top I introduced myself and thanked him. He wouldn't take the money that my parents offered. I love the neighborliness of my neighborhood.

My mother helped with some cleaning and I gave her about 6 pairs of shoes that won't work with my prosthesis. Dad and I had a nice chat. He is having heart surgery tomorrow and it was pleasant to connect with him beforehand.

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.

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.

Outside adventure

Today, Peg helped me scoot myself down the stairs and back into my wheelchair. It probably took us less than 7 minutes for me to go from upstairs to outside, with Peg making a trips up and down for the wheelchair, the leg rests, and our bags.

Oh, my! Being outside was phenomenal. The weather was sunny and warm, without being muggy or too hot. Peg wheeled me up to Dickinson, probably 5 or so blocks. We negotiated curb cut outs and crowded sidewalks. Then we sat outside at B2 and had some tea and cookies. Ken surprised us by meeting us there.

Ken "drove" me on the way back. We stayed on the sunny side of the week. I got to visit with Tony outside of his comic book store and Elissa outside of her Nice Things Shop.

My leg throbbed a little with the bumps on the sidewalk and ached when I got into the apartment. Peg and Ken both expected me to collapse into sleep right as I settled in my couchbed, but I stayed up for a few hours chitchatting. Peg made us dinner and we've been watching movies since then. I fell asleep frequently during one movie.

I have a few concerns about next week: I still need "babysitter(s)" to be around with me all day every day. If you are available to do this, please contact me with the day and a time slot (i.e. 11am-3pm, 2pm- 4pm, or 5pm - 7pm, whatever works for you). Last Tuesday, we beautifully scheduled folks to come every 2 hours. Some folks stayed longer; some folks had only the time committed to. It worked. We are also trying to get this working through LotsaHelpingHands.com, so you may get an email, too.

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.

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.