Recuperating at my parents' house

Last week was a little rough. After the car accident, I was moved from one emergency room to another. At the second hospital, a surgeon inserted a tube into my right chest wall to re-inflate my collapsed lung. 

The next morning, I was fitted with a back brace that stabilizes my torso. It fits like a corset. I spent a lot of time resting in my hospital bed. The physical therapy team was amazing and helped me put on my prosthesis to get me walking. I walked down the hall and back, with the therapy aide lugging the container of my lung fluids behind us. I was sore, mostly from the chest tube.

On Saturday, my godmother, her husband, and Ken came to visit me. During the visit, the nurse practitioner took out my chest tube. It hurt much less than I thought it would. Removing the tape and bandages hurt more than taking out the tube.

I got discharged on Sunday. My father and brother came to pick me up. We drove home. Mom had a belated thanksgiving dinner waiting for us as we came inside.

Since then, I have been spending a lot of time in my wheelchair and in the hospital chair at my parents' house. I can get around with my crutches, too, but I cannot get my prosthesis on. The wiggly movements that I use to don my prosthesis are irritating to my back. They are also difficult to do while wearing my back brace.

Yesterday, I tried to lay on my belly. My left hip has gotten very tight with all the sitting. I could barely lay on my stomach for five minutes before the muscles were too achy to continue. I tried again today.

We also took off the bandages from the chest tube. The area is still tender. My brace digs into my side right above the scar from the chest tube. Athena helped me stuff my brace with socks to pad my breasts and sides from the harder edges of the back brace. It's much better now.

I am going to Hershey, Pennsylvania today with my mother and sisters. They had already planned the trip and it will be nice to have a mini vacation. I will be back to Philadelphia on Monday.

I feel so lucky to have walked, well, hopped away from the accident and that Athena and I are ok. The car is not ok; it is totaled.

Post chemo #4

I was especially exhausted this past weekend. I think I slept about 20 hours a day from Saturday through Monday at Ken's house. I missed Halloween parties. I barely ate. When I returned home, Bunky did not leave my side until I felt better.

Then I had amazing pt on Tuesday and Thursday. I am getting the 4 step gait better so I don't have to think about each step. It takes more energy, so I can't go as far.

I even went for a .5 mile walk after pt on Thursday. When I get my energy back, I really try to use it. I figure if i can do the steps, i can walk at least a block. 

Of course, I spend my evenings sprawled in bed, trying to stretch little leg and my lower back which get so tight and achy with the walking. I

Today, I went to an amputee clinic with Ken. I was ready to work out, but it was mostly educational about foot care, recreation, the wellness gym, and yoga. We had a great lunch and I enjoyed connecting with he other amputees.

Then Ken and I met with the men who will put in the bannister on his steps. I am so thrilled about this change. No more bumping up steps on my butt.

Afterward, my parents joined us for a lovely, leisurely dinner at Le Virtu, across the street from my apartment. I did my best in nearly finishing my plate, with some help. Cathy and Francis, the owners, made it a very special night.

I have been organizing my pills by size and shape before taking them, mostly because I am a weirdo.

In other news

I am not going to write about trying to get my COBRA information. It should be in my hands in 7 days though. Other people  with more knowledge of these situations are helping me.

I have been visiting my parents. My 3-year old niece Victoria hung out with me today. 

She enjoyed tickling my prosthetic toes. I love that she doesn't seem to notice that I have a robot leg.

Tired and nauseous

I am recovering from yesterday's chemo. I am very nauseous and my leg really hurts. I can't get comfortable. Athena put on Monty Python and got me some egg drop soup for nourishment. I was scheduled for an ultrasound on my leg to check for blood clots, but rescheduled it because I was too nauseous. My orthopedic doctor called to make sure I knew about the sarcoma. He said it was sent to Mass General and had not been fully discerned. I have an appointment tomorrow  to get stitches out from the Baker's Cyst. I am excited to see the scar.

 I am so grief struck by this new medical adventure. I cry easily and at the smallest provocation. I am tired of having cancer and feeling sick. I am tired of not being able to walk or sit without pain. I miss walking around in my neighborhood and seeing friends. I regret that I didn't bike more last year, but I feel like I created enough awesome memories of fun times hiking in the woods, tubing down rivers, camping, biking, walking around my neighborhood, going to shows, dancing at parties, and just getting around to almost satisfy my mind. I haven't been able to focus on reading today, but maybe when the soup and drugs kick in, I will.

Sarcoma in my leg

Athena drove me from my parents' house to Philadelphia perfectly on time for my 3:15 appointment, even with our brief stop at Stewart's for a root beer float. Unfortunately, my oncologist was running behind and we waited almost 3 hours before we saw her. I was in pain. I skipped a dose of Percoset to be alert during our time.

Dr. Rubin explained that I had a sarcoma in the muscle of my leg. She wants to start chemo tomorrow. She said this cancer has nothing to do with the breast cancer either. I cried. I am overwhelmed and sad that I have to go through chemo again. I feel like my body is not being helpful. I am angry too. What if we explored this cyst more way back in the beginning?

We came back to my apartment and Bunky was so happy to see us. Emily came over to comfort me, while Athena made phone calls to let our family know.

Home again!

Yesterday, I got to leave the hospital with Athena and go to my south Philly apartment.  I had done well in Pt: I walked down the hallway, up and down a flight of stairs (with a cane) and back to my room. Then, the PT got crutches, and I did the same thing again, only I didn't go as far up the steps.  It was awesome, especially given that I had difficulty walking to the hallway and back in my first PT a few days before.

Lumpy 2 was full of necrotic fat cells, cell debris, and blood clots. Eew! In the hospital I got 2 shots of blood thinners in my belly every day, to help prevent further blood clots. At home, I have to take aspirin twice a day.

I had an appointment at radiation oncology yesterday morning,also. Because that department is in the first floor of the same hospital, I thought someone could just give me a wheelchair to help me go. Apparently, that's not how it worked at all. My Radiationn Oncologist came up to my hospital room.  She and another doctor explained that my initial appointment would be 8/ 23 and that daily radiation would start a week later and last for 6 or 7 weeks.  Dr K said she had consulted with my oncologist and they would like me to get the nodules in my lung biopsied as soon as possible.

running errands with Athena

Athena has been tremendously helpful. I knew that I would feel better eating more nourishing foods, but I had no idea that I'd feel this much better! I've been eating tons of fruits and vegetables, rather than the semi-healthy frozen foods that I've been living on. I'm also trying to minimize gluten in my diet because my acupuncturist suggested that it might increase any inflammatory response that my body has. I can't afford that; my leg is so swollen, I couldn't wear pants. Luckily, it's hot and shorts are acceptable.

Yesterday, she dropped me off at Methodist to pick up my MRI report. I made a bad decision and read the report which was scary, partly because it used lots of words I didn't know and some words that I did, like neoplasm. I really don't want to have Lumpy II have anything to do with cancer. I'm done with that.

Today, Athena dropped me off at Renaissance Healing to get acupuncture and chiropractic work done. My acupuncturist did cupping on my knee to help reduce swelling. My chiropractor helped with neck stiffness that I wasn't even aware that I had until it went away.

Then Athena drove me to work where I sent out letters to all the clients whom I couldn't reach by phone. I'm not going to be working again until September. I feel a little guilty about my absence, but the families have ways to continue therapy if they are interested. Most of the families said that they'd wait for me.

After work, I dropped off the MRI report at Dr. Junkin's office. Then I hobbled across the street to my surgeon's office to get another prescription for Percoset. Athena picked it up for me.

calvary coming in

I feel nervous that my MRI will not be sufficient for the surgery and that I'll need another (painful) scan. I'm also in a lot of pain with my leg. I called the surgical assistant and she scheduled me to have another ultrasound guided aspiration on my knee as it was hurting too much.

My younger sister, Athena, said that she'll come help me. She'll stay for a few days to help with coordinating all my appointments and in helping me with groceries and things around the apartment. I feel like the Calvary is coming in: my sister and helpful medical appointments on the near horizon.

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.

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.

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.

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.

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.

Chemo #4

I had chemo yesterday. I am really dozy, so I will keep it short. I am 2/3s done. Yay! My doc said that she will set up an appointment to get Lumpy II (the bakers cyst) drained. Yay! My leg is pretty swollen. My healthy ankle is 8" around and my not so healthy one is 15" around because the blod vessels are cut off from the cyst. I am using a cane. I had lovely amazing Greek easter with my folks on sunday. My cousins gave me an iPad. They are awesome. Also, I went to chiropractor and acupuncture on Monday. I think it helped. My acupuncturist suggested that I eliminate gluten since it can increase inflammation. There was more, but I cant remember it articulately. Today I am mostly half awake.

Needle count: 27
Touch count: 16

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

in the frying pan and on fire

I called the doctor earlier last week to ask for more drugs. My legs and hips were hurting and the percoset was not helping with the pain. The nurse asked me to come into the office on Thursday because she didn't think the pain should be so intense.

On Thursday, I headed to the office on my way to work. The oncologist examined my breast again; Lumpy is even smaller. Yay! She looked at my leg briefly and said that she thought it might be a blood clot. She admitted me to Hahnemann Hospital so that they could assess and treat it.

At the hospital, they took 5 vials of blood from my port and took my vitals 3 different times in the space of 2 hours. The nurse also gave me a shot of blood thinner medication into my belly every 12 hours to treat the possible blood clot. Later, the art therapist brought me a ton of art supplies. A few friends visited me and we joked around before visiting hours closed for the day. I had trouble sleeping because my back, hips, and entire left leg couldn't get comfortable. I was in pain, despite the percosets every 4 hours. I painted watercolors all night.

In the morning, they wheeled me down to x-ray and ultrasound. The radiology technician did the exam twice, pressing the magical ultrasound wand hard into the sore spots on my leg. The doctor asked me questions about Lumpy and whether or not it was an invasive cancer. Normally, I might have been more anxious with these questions, but I was barely able to keep my eyes open after not sleeping and taking regular painkillers all night.

My oncologist said that I have a Baker's Cyst, basically a fluid-filled sac behind my knee cap. It is pressing against blood vessels, which explains why my calf is swollen. She released me from the hospital.

I spent the weekend limping around Ikea and hobbling at a party. My primary care doc examined me today and said that I should stick with ice, ibuprofen, and rest because stupid cancer and stupid cancer drugs might be affected by the treatment of the cyst.

Nothing like leaving the doc in pain.

needle count: 21
touch count:  13

head shaving party

Yesterday, I had a head shaving party with a bunch of awesome friends, some delicious beers, and some pizza. It was wonderful. I had many different haircuts along the way. Two of my friends shaved their heads too.

It feels a little weird that we spent so much time styling up my hair, since it's still falling out like crazy.

Yay! I like this hair cut. Even if I only have it for a week.

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.