Good news all around: I am back home

I didn't have to go to the hospital today. Yay!

Dr. Rubin said that she liked the softness in my calf. She added that before it was hard, like an infection, and she thought 'something' was growing there'. Neither she nor the nurses were too concerned that I missed yesterday's treatment nor that I missed it because I could barely move my leg.

Mia, my friend, stayed with me for while, then left to do other things. I think I fell asleep when she left. I woke up to Dr. Rubin leaving the room because she didn't want to wake me up. I explained that I took all of my of my drugs today so that I could take the ambulance. The doctor and nurses all laughed at this comment. I think I did well; Dr. Rubin only had positive things to about me and my knee. I think I forgot to mention some things, but I can call with questions. They even easily renewed all of my prescriptions.

When i was told that i could leave, I had to wait about an hour for the ambulance to pick me up. Sara, one of the chemo nurses, waited with me for most of that time. I said that I had had a friend to take across the street to chemo on Monday, because it is across the street and if the EMTs do it, it counts as a separate trip and the nurses were often busy so I had to wait a bit. Sara, the nurse, said for me call them because someone was likely to be free and could take me; her comment brought tears to my eyes.

When we got to my apartment, Nicole was already there and helped us in. Nicole brought me some food so the pain drugs would absorb faster. It is so hard to eat when I am not hungry and feel nauseous from pain, but she definitely helped. Then I slept for a long while. Ken came over with some sushi.

Things are much now than they were this morning when I was sure that I would be hospitalized. Tomorrow, my pick up time is at 12pm, so I can sleep in for a little while.

Location:Home

Today's worries; Yesterday's struggles

I am worried that when the EMTs come I won't be able to go with them. Also, I am worked that if I do go with them I will be hospitalized. Bleh!


Yesterday, when the EMTs came, I had trouble sitting in their stair chair. It hurt my left leg to much to press against the metal frame, even with a pillow under it. I had trouble using my left leg on Saturday and Sunday. Monday was not much better. I tried hard to get myself "ok" in the chair, not even comfortable, but couldn't do it. I took all my pain meds, too. I vomited, I think from the pain. Eventually, dispatch contacted my EMTs and said that they either needed to take me or they needed to move on. I said to move on, since I still couldn't do it.

I rescheduled my appointments, Chemo is today. Radiation is tomorrow. My friend, Mia, who was going to help me get across the street from Radiation to Chemo, came to my apartment with some food and drinks. Her presence helped me. I was feeling like a failure and she pointed out that I wasn't.

The nurse came to redo my bandages. A nurse comes daily to change my bandages, but today's visit was more of an ordeal, partly because she didn't give a warning so I could time my drug intake. Anyway, I could not move my leg easily or without excruciating pain when she first started working on it. Eventually, I was able to bend it my foot was on the ground and my knee "was pointed at the sky". The nurse rebandaged it in this position and seemed frustrated that I couldn't do that the whole time. I don't even want to think about any illness or injury to Righty.

Today I hope and pray that I can take the stair chair. I am worried that I overworked myself so much that Dr. Rubin may hospitalize me. Yesterday I was terrified at that possibility. Today I accept it more. Today, I can move it much better with less pain, but it was a struggle to function. My friends helped me all night. I am fuzzy on details, as the nurse suggested taking them every 4 hours, instead of when I felt pain.

Location:E Passyunk Ave,Philadelphia,United States

Thanksgiving weekend

On Thanksgiving, after my nurse changed the dressing on my knee, I left my apartment. I scooted down the stairs and into my wheelchair. From the wheelchair, I pulled myself up into the backseat of Ken's car and arranged my leg. We drove to Wildwood to join his parents for Thanksgiving. When we arrived, I pulled myself from the car into my chair. We rode into the garage then I pulled myself up the stairs and back into the wheelchair.

I enjoyed dinner. I especially enjoyed getting out of my apartment and seeing other people. By evening, I was exhausted and could barely keep my eyes open. When I went to bed, I needed to use a tiny 2-step ladder to climb onto the mattress. Friday, we reversed the process, climbing down the steps, then the car ride and climbing up my own steps. I crawled into bed afterwards to rest.

Then the nurse came to change my bandages again. It didn't hurt as much as the previous times, which may mean that the skin is healing. I hope so. I spent the rest of the afternoon dozing on and off. Today, I also spent most of my day dozing. My parents came over to share Thanksgiving leftovers. We also worked together to bake an apple pie. At some point, I became nauseous and Dad got a refill on Zofran, while Mom decorated my Christmas tree.

I am completely fatigued now. I have been doing worse on my walker than I had been earlier in the week. I think my activity took a lot out of me. I am so grateful that I was able to leave my place. Now, I wish my muscles would recover already.

Per-Thanksgiving UPS miracle

Yesterday, the Wound Care Specialist, Judy, came to my apartment and examined my leg. She slowly cut off the bandages, while I explained that I became excruciatingly anxious since the time the nurse pulled off the bandages and blood forcefully spurted inches out of the wound. I took my painkillers and my Ativan too late to experience their effects until after I had the new bandages.

Nurse Judy took some time unwinding the gauze and pouring saline over the parts that were stuck. She wasn't as slow as other nurses, but she was gentle with a brisk attitude. I will admit that I screamed a few times as she pulled off the last pieces of blood-soaked gauze.

Nurse Judy explained that the healthy skin behind my knee was sticking to the bandages. Athena described it as "a line of red blisters, paper cut size". The nurse said that we needed to stop using one type of bandage and start using a new one that was coated in Vaseline and had antibiotic and anti microbial properties. She happened to have just one in her bag. When she applied it, I felt like when my mother put cream on my sunburnt shoulders after a day at the beach; the cooling sensation was relieving, but the painful pressure from Mom's fingers made the whole experience intense.

Today, Nurse Matthew came to check on my wound and to change my bandages. I explained to him everything Nurse Judy said to me. He said she ordered supplies, but they had not come yet. Our plan was to re-use the innermost bandage, as it was still ok to use. He started taking off the bandages. Despite taking morphine beforehand, we still needed to take breaks because I was in too much pain. During one of the breaks, a doorbell rang. Nurse Matthew suggested that he check it out. He returned with a big box of bandages and other supplies. UPS finally was able to deliver me a package at this apartment. They also had the best timing ever.

Happy Thanksgiving to the readers, their friends, and families. There's so much to be grateful.

Weekend bliss

This weekend has been fantastic, gorgeous, and 6 kinds of wonderful. My godmother arrived Friday afternoon, just as the EMTs were bringing me into my apartment. I love her. She christened me when she was ten and we've kinda grown up together.

While I took my post radiation nap, she started cleaning. When she left on Sunday, my kitchen was spotless for the first time in months. She made Ken and me her mother's beef stew over rice, which was delicious. We even got to have one our marathon talking sessions, until 3:30 am. This session was on the same day that she and Ken helped me scoot myself down the 21 steps to the sidewalk. We rode up Passyunk Ave. hoping to run into friends. After a few blocks, we turned around and stopped at Chayya for refreshments. Yum. I got myself back up the stairs and rested for a bit.

Peg left Sunday and Athena arrived a few hours later, along with the nurse. The nurse changed my bandages with the most calming attitude of any nurse. She said that the sore spots were healthy skin that had gotten stuck with adhesives. Somehow that reassured me.

Today, the EMTs brought Athena and I to my oncologist's office. The staff suggested meeting with Dr Rubin, before heading to the infusion room. Nurse Rosie took blood; a few minutes later Nurse Sara said that my blood levels were too low to get chemo.

Dr Rubin came in and suggested that I take neupogen to rebuild white blood cells only on days with no chemo or radiation. So, I am taking it this week and the weekends, in the future. She felt that my leg shrunk! She suggested airing it out sans bandage for a few hours a day and applying desitin to the raw spots of my leg to help the skin heal. I did not need a transfusion or to go to the hospital.

Tonight, Athena and I are celebrating with Japanese food from a new takeout place.

Being brave and looking for miracles

I've been tying to approach my illness from a space of curiosity and open minded ness. There is a metaphor of the cancer survivor as a warrior, with teams of friends and family offering support, with doctors and nurses directing the battles and providing the weapons. Sometimes this metaphor feels true for me, like when I am about to start a new treatment or I'm in physical therapy. Both of those situations tend to make me want to be brave especially.

I know that some people think that I am brave and strong simply because I am coping with the cancer diagnoses with as much grace as I can muster. If I am brave, it is because I have "exercised" my bravery muscles all year long.

I find myself interested in the surprising, lucky, and miraculous moments of my days. Maybe these moments are tiny, but they are lovely to contemplate. I am going toput in an effort to start recording these moments, to give myself something to focus on. Yesterday, my friend Jen picked up my mail for me; there were the usual bills, but the get well cards and the "I am thinking about you letters" outnumbered the bills for once. Also, the cards included some necessary funds. Thank you all so much. It helps me financially, but it also reminds me that i am not alone. Yay!

Jen also brought in a big box that was full of supplies for taking care of my wound. It had been sent UPS, but they don't ring my doorbell and I was expecting to have to send someone to go get it. Yay! The visiting nurses had expressed frustration about my missing supplies and brought some to me as well. Now I have more than plenty of bandages, gauze, saline, and tape. You might keep this in mind during a zombie apocalypse, or other disaster.

I know there were more miracle moments. I count every time I safely get downstairs with the stair chair as a miracle. When the radiation technicians comment that things look good and when they notice that I am moving better, I count those as lucky moments too, because it is evidence that I am stronger and getting healthier.

I had a relatively high fever last night and slept terribly in hour long intervals. The fever broke with the help of some Tylenol. I am wishing to get through today smoothly.

Monday was a long day. I slept badly because I was worried that the bandage would leak. It didn't start to leak until the EMTs brought me down the stairs and the bandage twisted.

I explained the bloody spurting from Sunday and Dr K looked at the wound. She said that everything looked good and suggested that the nurse had pulled out a "plug" when changing the bandage. I got radiation, but with my legs resting around a different foam form. She explained that this form would reflect less radiation on the skin and cause fewer damages. Dr k said that she was going to give me a radiation vacation during the week of Thanksgiving and that I was getting 40 more treatments (I think).

Two of the super-nice nurses moved me across the street. Somehow I was taken back within an hour, instead of waiting that long just to check vitals. I was very sleepy, but had trouble sleeping all the way. I seemed to get a ton of texts, so I spent my time with catnaps and responding poorly to texts. After the infusions were done, around 3pm, I got moved to an exam room where I immediately called transportation for my ride home. I waited for Dr Rubin for almost an hour. Luckily, the transportation crew called and said they were running late.

Dr Rubin said that we would have chemo next week and that chemo would stop around the same time as radiation. Afterwards, we would have tests to see what the sarcoma looked like. After this appointment, I went downstairs to the lobby expecting to wait for the ambulance. When I got there, the EMTs were there. It was perfect.

The visiting nurse arrived soon after and gave me a new bandage. I spent the rest of the afternoon lounging half awake and then hanging out with Ken when he came after work.

I am very tired and have been all day. My only other symptom is the awful, simultaneous constipation-diarrhea, but that's already sharing more gross stuff for the week than necessary.

Bloody Sunday

I had a great weekend. I made chili in my slow cooker and shared some with Ken for our Saturday Night Date Night. Sometimes we do normal couple things and It feels very pleasant not to have cancer always be my forethought.

Today, I visited with Ken. He made a version of huevos rancheros with the leftover chili. Yummy! As he left for the Eagles game, Adrienne arrived. We spent time catching up on work and the on our personal lives.

As she headed out, my parents arrived. We had just greeted each other when my visiting nurse came. Her job was to check in with me, take my vitals
and change my bandages. The first two steps went swimmingly.

Then I started to help with the bandages by cutting them and outlying the off. The last few layers were stuck to the wound. My nurse pours saline on the bandages and tugs them off. Blood starts spurting rhythmically and I start to freak juror. I beg mom to continue the story she was sharing as a way to distract myself from some terrifying thoughts and feelings. The nurse presses ABD pads against to stop the bleeding and calls one of my doctors to determine whether I need to go to the emergency room, which also freaked me out.

The nurse leaves with the promise that she will call me with the doctor's news and ethat I needed to keep an eye on the leakage as she estimated that at least 300mL of fluid wear lost. She rewraps the bandage quite snugly. Finally, she calls said that I do not have to go to the emergency room. Yay! I resume my visit with my parents. My mind does not move too far from deep anxiety and I keep imagining wet places on the blankets and pillows. I put easy comedies on Netflix and fall asleep. When I woke up, I carefully brought everything I needed with me and have been putting off sleep. Writing is a form of procrastination for sleep.

I think that the nurse had wrapped the wound extra snuggly on Saturday and fluid could not escape. When she pulled off the last bandage, I think she pulled off a scab that had dammed up the fluid outflow.

Tomorrow I am calling Rad/Onc and explaining the blood, my hypothesis of what happened, that i will be going alone, that the EMTs will charge extra to take me across the street for chemo. I might suggest that Dr K either examine the wound at Dr Rubins office or wait till Tuesday to see it.

Possible change for radiation

I need to be quick because I am so sleepy.

I had radiation today and Dr Komarnicky said that the wound on the back of my knee was looking good. I had a CT-scan after radiation to determine whether the field getting radiation could shrink. Her thought is to leave a section of my leg clear of radiation so that the yuck can drain from my foot, ankle, and calf.

My physical therapist saw me today and said that he had not thought that I would be doing so well when he last saw me a week ago. He gave me more exercises and encouraged me to walk as much as I could.

I have had visitors for the last few days. I feel bad when I am blinking myself. Just to stay awake to hear their conversations.

I am having. Intense muscle spasms which keep me up. Bleh.

Radiation, chemo, and new drugs, oh my!

Today will be a busy day. The ambulance company has already called to confirm their appointment for 9:45 to take me to radiation. I have 6 more radiation treatments. Then the doctors will re-evaluate my knee and probably suggest more radiation.

I also have chemo today. At least I am pretty sure that I have chemo today. One of the chemo drugs that I take has a strange schedule that does not seem to stick in my brain. I will call the oncologist's office at 9 to make sure that 1) I should come and 2) there's room for me after my radiation appointment.

I may get to take my new drug during my chemo appointment. My oncologist stresses that this drug is not chemotherapy, but it treats cancer. The difference is probably the answer to a test offered in med school. This new drug interrupts the cell growth cycle in cancer cells so that they cannot grow. The drug just got FDA approved for use in treating sarcoma. Unfortunately, because it is a new drug, I need social workers' support in working with my insurance company to get it approved. Otherwise, the cost to me may be $3,000 - $4,000 a month for treatment.

I know that pharmaceutical companies need to make profits, but I cannot comprehend how this drug can cost so much. I would like to see a breakdown of the costs of all my drugs. I haven't received any bills for the chemo for the sarcoma, but bills for breast cancer chemo showed that my insurance was billed $5,000 for just one of the drugs. I think the total bill to my insurance company was around $10,000 per chemo treatment. Insurance pays a different amount and somehow I owed less than $100 for each treatment. It feels like pharmaceutical companies just make up prices knowing that insurance companies are going to make up what they pay. I feel nervous that the new sarcoma drug (which seems perfect for my treatment) will be out of reach. I cannot be too nervous about it, as I will find out for certain within a few hours.

Luckily, with chemo, we will have a good guess of when we will be ready to leave. We can call transportation early, so that we do not have to wait 2 hours for the ambulance to pick us up. I cannot wait to be strong enough to scoot down the stairs on my bottom so that we can drive to treatment. It is the little things in life that are important to appreciate. It is going to blow my mind with joy when I am strong enough to go downstairs standing (at least the first time).

Me and my sister

(I am too tired to offer a brief update. This post is written guest blogger: Athena Nonas, superstar baby sister.)

Yesterday we made delicious apple pie and super nutritious quinoa spinach soup. It was wonderful. Marcy and Ken came and we enjoyed good food and conversation. Jen kept saying how perfect the evening was.

Today the visiting nurse came. She seemed weird and I'm pretty sure I did better a dressing on Jen's wound than she did.

Veronica came to visit. It was really fantastic seeing her. She brought lunch and her 6 month daughter Kate. We got to talk a bunch. Veronica feels like a big sister to me. We look forward to our next visit.

Next week there's radiation and chemo scheduled.

Jen's been walking more each day with her walker. She's been in good spirits and eating much better than when she was in hospital.

Location:Sister central

Coming home from the hospital

So, it has been a few days since my last update. While some writers may be quieter when things are quiet, I find myself less able to write when there are more things happening. I only have so much energy.

I am a free woman, discharged from the hospital on Tuesday night. Ken and Drinkhouse helped me bring my things back to the apartment. I was moved from the hospital bed onto a stretcher, where I was buckled in super tightly. The nurses were concerned about my getting cold, so they wrapped blankets around my head and shoulders. We drove the 3 miles from the hospital to my apartment and hit approximately 80% of the bumps. I tried to pad my knee, but I couldn't move my arms. We stop the ambulance in front of my apartment and the EMTs pull the stretcher to the sidewalk. They help me transfer from the stretcher to a chair so they can carry me upstairs and strap me in tightly. The man holds the back of the chair, while the woman holds the front as they navigate the steps.

I felt so scared. The movement Is not stable and there are a ton of steps going up to my apartment. I hold all the ends of the straps and pray "please god, thank you god" for each step that we pass. Finally we get into my apartment and back into my wheelchair. Hooray! Mission solved.

I will be having ambulance transfers from my apartment to Radiation and back all this week. The stair climb is similar in each case and tends to increase my anxiety and pain.