Rehab

It's hard. I have 3 hours of therapy a day. My muscles are all sore.

Moved to Magee

I've been moved from Hahnemann University Hospital to Magee Rehabilitation Center yesterday. It took forever. I was told around 2pm that the ambulance would arrive around 3pm to pick me up and take me to Magee (2 blocks away). I asked my friends Maureen and Christina to help me pack up my things. In the process, I realized that I didn't have a reasonable assortment of clothing in that I didn't have any shirts with me. As Maureen frantically packed my things, I asked Rich to please come pick up some of the random art supplies that I had and bring them to my home. Then he could pick out some tops and bring them back with me to Magee. Luckily, he agreed to help me out.

Unfortunately, the ambulance to pick me up from the hospital did not come until almost 5pm. I was left in a room where everything was packed up for 2 hours waiting to be picked up. I just tried to sleep. Remember when I said that Magee is 2 blocks away from Hahnemann? Guess how long it took to travel. OK, it took nearly 45 minutes to go 2 blocks. Yay, traffic!

When we finally arrived at Magee, Rich was there with a bag full of shirts. yay! He hung out during the incredibly long intake. Ken arrived, too. We had a good visit together and they ordered food from the pizzeria across the street as my food was cold and congealed AND I was finally hungry. I ate some food and did pretty good with it. I didn't throw up until 3am.

Today, I had Group and occupational therapy. Group consisted of played pictionary against some folks who had some cognitive deficits. It felt unfair when my team won. There's nothing wrong with my brain though. After Group, an occupational therapist helped me stretch my legs. My goodness, my hips are tight! After OT, I had lunch in the cafeteria. I am trying to eat, but it is still tricky.

I am free the rest of the day.

Haven't updated in a while

Ok, so, I haven't updated my blog in a while. . .
I am doing ok, I can't seem to sleep or eat, but, otherwise, I am ok. I know that sounds weird, but it is true. I know I have to eat, but, it is hard with no appetite and I have been throwing up like crazy. So it has been hard!

Also the fundraiser for me went very well. I was able to be there for a few hours. I got to keep several paintings at least for the weekend. Unfortunately, the day might have been overshadowed by the tragedy in Connecticut.  It is too terrible to even comment on or watch television.

Let's see, I have been up to the chairs in the room via walker since the day after surgery.  I had an adventure with my iPad.  It got stuck under the mattress of my bed and ended up wedged between big metal plates that bend my bed.  Ken and my mother tried to get it loose, but couldn't do it. They said it was bent in half.  I said that I would buy a new one. Then we asked the nurse for help. She pressed one lever and popped out the iPad. It still worked. Isn't that amazing?


I still can't stand to see my stump. Or, really, hear about it from doctors.

Surgery

Surgery went well. Jen's in recovery sleeping.
Thank you all for your prayers.

One last look

Ok, a few last looks...

Change of amputation

I am actually getting the amputation on Monday. My surgeon preferred to work with the regular staff, instead of the weekend staff.

Amputation is likely to be tomorrow.

I spent the day in the hospital with Athena and Ken, some of my favorite people in the world. I learned that it was Thursday, which completely confused me. I mostly spent the time in a strange dream, from which I seem to have just woken.

We spent some time making art goodbyes and honorariums for my Left leg. I appreciate it's strength during hikes, it's endurance during bike rides, the fun we've had dancing. I danced in so many performances as a small child; I learned ballet and how to dance on my toes. I learned tap dancing. I have learned different yoga poses that develop the strength and flexibility of my body.

I took Kung fu classes during college. Matt and quite a few other people, used to play with giant bouncy balls in the dark squash courts. All thanks to having a healthy left leg,

Scary stuff

So 2 more infectious disease docs came in. They further explained the depth of necrotic tissue behind my knee and I absolutely require an amputation. The only questions are: when am i saying goodbye to my lower left leg? And am I ending this kkrelationship at Hahnemann (where I am) or go to Cooper (in Camden).


Scary stuff

Amputation seems to be on everyone's minds.
I have had 2 or 3 surgical teams and infectious disease team, as well as others.
I am exhausted and may have slept through appts.

Orthopedic team said possibility of surgery. Discuss after more tests.

Infectious disease team put me on antibiotics for infection. It seems to be working! Fever down, blood pressure down.

Dr Tulin explained now that the infection was in my bones and that I would need an amputation.

I have not had a meal today. Athena called the nurse to find out why. The nurse looked over chart and saw there was an order for no food or drink due to possible surgery. Since surgery has not even been scheduled or agreed upon, nurse talked to dietary to take my dinner order.

HUH room & plan info

I am in Room 1553 at Hahnemann University Hospital.
The surgical team just very slowly removed my bandages and took photos of my wound. They are asking Dr Lind, my breast surgeon, to examine it tomorrow morning. From what I could see, it looks very disgusting. The doctors are all very concerned.

After they set me up, I had to use the commode, of course! The process was terribly painful. I am waiting for pain drugs to kick in and for the pain of movement to stop.

Getting hospitalized

I am getting hospitalized now at Hahnemann University Hospital. My visiting nurse saw that my wound had gotten worse over the weekend.

She called the doctors that they needed to examine my wound. It took forever to remove the old bandages and replace them with new ones. The EMTs came before we were done. Because I was in so much pain and the wound on my knee is on the entire back of it, about a palm-sized area on the outside of my knee, the stair-chair was considered too painful. It would press against the tender spots, making them bleed. The EMTs took me downstairs in the wheelchair. It was the best trip! Not even kidding.

We went to radiation and the resident there said for us to go to admissions, so no radiation today. Athena and I have been waiting here for 3 hours.They don't have a room yet for me, but it should happen soon.




I get lots of bracelets.





Athena is having the time of her life.


I will update you as I know more.

Rough week over

I have had a rough week. I had trouble moving my left leg, starting on Sunday. I missed my appointments on Monday because I couldn't bear the pain of the stair-chair. The rest of the week, I slowly regained some mobility. Both Dr. Rubin and Dr. Komarnicky have said that my leg seems to be doing better, even though it hurts more. Dr. K. even ran tests to see whether the scope of the radiation can change or if there was anything "deeper" going on, but the test results showed that radiation can continue just as it had (for just 6 more sessions too!).

Despite these observations from my doctors, I have barely left my sofa bed, aside from going to medical appointments. My leg has a new "soft spot" that bleeds on contact-- completely gross. I have trouble moving from my bed to the wheelchair and I have been using a commode (or a large pot, when it is very urgent) when I need to use the toilet. The nurses suggested that I take morphine every 4 hours for pain instead of waiting to be in pain before I take it, as removing my bandages can be terribly painful. When I tried that, Ken and several friends suggested that I was so non-functional that I needed to reconsider that plan.

I wonder if I sprained my knee with all of the movement up and downstairs and into and out of cars. None of the doctors have examined me that way. I have sprained my knees before and it seems similar: sore, swollen, responds well to ice, elevation, more painful in movement than when it is still. It makes sense in that it started to hurt days after so much exertion and nothing else changed. To some extent, the bandages on my leg prevent my leg from moving very much, at least in the straightening/ bending range of motion. I will have to ask my doctors.

Anyway, Saturday I was cheered up by getting mail and having a visit from my parents, Thea Mary and Thea Sophie (my great aunts). The visit was so great- I had fun seeing everyone and by being encouraged, in person. It can be so challenging to maintain a positive attitude when it feels like things are worse. Somehow listening to funny stories while eating delivery with my relatives makes everything more acceptable. I don't mean that I want this situation to continue, but more that I can handle what is happening enough that it doesn't get me as down as it did a few days ago. My sister is coming tomorrow and said that she would stay as long as she could. I am so excited, even if it is just for a few days. It is so hard for me to function when I cannot move one leg and am either in constant pain or dozy from drugs. (Try it some time, for a challenge.)

Also, Ken decorated my Christmas tree with a garland from the paper bracelets that the hospital used to identify him as a visitor. Somehow, seeing them linked together across my tree feels good. It is a pretty long chain and it reminds me that he was always there.

For some reason, today the mail held many beautiful, encouraging, compassionate letters as well as thoughtful gifts. I read and re-read cards and letters. I appreciate the time it takes a person to go out of his or her way to get a card and send it. I think it can be so challenging to put thoughts and feelings into words. I wish I had the energy to individually thank everyone right now. I am getting through my thank you cards, it's a long task.

I hope these supports signal the light at the end of the tunnel. I don't like that metaphor because my high school English teacher, Mrs. Valentine, would add "could be the headlights of an incoming semi." Maybe a better metaphor is the rainbows and lovely sunsets following a storm? Some of my friends who have had children describe a moment in labor when she is more aware that the baby is coming and is able to continue with new effort. Maybe it's like that? I don't know, I just feel more hope that I will be able to walk a little, use my bathroom, move less painfully in the very near future.

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.

Post chemo and pretty good

I am still in the hospital. I had chemo on Saturday and it wasn't terrible. I was nauseous from Saturday night to Sunday night, but did not have any other major side effects. Yay!

Because of a giant hurricane hitting the area in the next day or two, my doctors suggested that I plan to stay in the hospital until the weather calms, possibly Wednesday. They were concerned with my missing radiation appointments or in having difficulty getting to the hospital if my leg became infected. Being in the hospital also means that I probably won't lose electricity or run out of food.

My leg is still leaking. The nurses change the bandages on it every few hours. It does not hurt, but I sometimes still feel scared when I see the amount of fluid from it.

A group of doctors from the Infectious Disease department examined the leaky spot behind my left leg. They agreed that there was no sign of infection and that the skin was probably thinned from radiation. The doctors took a sample of fluid, but said that it probably would not be too informative unless they saw something very unusual.

My parents visited this weekend, along with Athena and Ken. My mood is a little lighter. I am excited to have a safe view, if Hurricane Sandy is crazy and to go home sometime soon, if it isn't.

My leaky left leg & other reasons that I am stilling he hospital.

I have been feeling really cranky lately. I am becoming depressed. Actually, I have probably been depressed for a while, but now I am losing energy to fight it.

I am still in the hospital. I think I have been told for a week that I am going home from the hospital "tomorrow or the next day", but it has been 15 days total. Ken has visited most days. My Aunt Karen & Uncle Jack visited in the first week. My friend James spent the afternoon with me. Some of my professors from grad school have visited, too. My youngest sister Athena came to help me at home, but has been visiting me in the hospital. Despite all of these visits, I feel lonely and isolated. People either seem to think everything I do is a heroic effort or that I am not trying hard enough.

I want to be home with my cat. I haven't been in my apartment for more than 3 weeks and I miss it. I thought I was going home Friday, but it turns out I have chemo Saturday. I somehow was not aware of this! I thought chemo was every 3 weeks. I started to cry when my team explained that I might be going home Saturday instead.

Thursday, I started to notice that the area behind my left knee was damp. Over the course of the day, it seemed to leak brown fluid on pillows propping it up. I told nurses when I saw them. When I went to Radiation on Friday, I explained that it seemed leaky. The therapists put a cloth over the prop I rest my leg on. When Radiation was done, there were dark spots all over it.

Athena and Ken visited me until around 9:30pm on Friday. The nurse brought me the usual: more pills, and another shot. I asked him for help using the commode. When I moved my leg, I saw my stains on the pillow, but they were lighter. Then I moved my leg again, and there was just a drip of blood. I started to cry and sat on the bed with my knees bent upward, below the a growing puddle of bloody fluid from behind my knee. My nurse left to get new linens and dressings for the wound. He wrapped my knee up while I sobbed in fear at the amount of bloody fluid everywhere.

He helped me move to the commode, where I peed a whole liter of fluid, a completely ridiculous amount caused by doctors who felt a diuretic would get rid of the swelling in my leg and foot. While on the commode, I removed my bloody pajamas and watched as the nurse change the sheets and sop of fluid off the mattress. He helped me into the drafty hospital gown and back into bed.

Later, the on-call resident was called. While she didn't want to take off the bandages, she explained that radiation sometimes thins the skin so much that it can become leaky. My cousin Stephanie confirmed radiation's effect on the skin with me and also called the doctors at my hospital to learn more.

I have barely slept tonight. I am too hot, then too cold. I am physically uncomfortable and anxious about my leaky left leg. I don't know if I get to go home Saturday. I don't know if this is the sort of emergency that prevents me from leaving. the nurse keeps saying "better out than in" and that that fluid needed to get out of my leg. I hope he is right.

I was feeling miserable before I knew that my skin was disintegrating. Now, I don't know what to do with myself.

I don't really have much to say. I am wide awake at 2 am and am still in the hospital. I just snacked on crackers in my bed, which is silly because there are crumbs everywhere. I haven't eaten too much today, though, because of nausea and vomiting. A snack-attack is probably okay for me. Hopefully, I go home today after Radiation. Cross your fingers, wear your lucky t-shirt, rub your rabbit's foot, and say prayers. I can use all the help that I can get

I had some amazing sleep earlier. I had to negotiate with Ken and Athena to stay a little longer because they wanted to let me sleep and I wanted their company. I feel so lonely that when I do have company, I am greedy for friends to stay as long as possible. I could barely keep my eyes open at 9pm to say the goodbyes. I probably was asleep before they left the hospital. I know someone did vitals wound this time, I just don't even remember it.

Around 11:30, I woke up to the Nurse's Station squawking at me through the intercom, checking to see if I was ok. I told them I was, but a few minutes later, a nursing assistant came banging on my door to see if I was ok. Apparently, somehow, there was a short in the call button system so that my room light was on, signaling that I needed assistance. The nursing assistant fixed the button and I went back to sleep.

Around midnight, someone came in to do vitals again. I can almost sleep through this process, except this time, I was dizzy and nauseous, like I was much of the day. (I didn't think that I would enjoy writing about vertigo-induced nausea and vomiting, so I decided to write about the night instead.) My nurse opened a window and a door to increase the air circulation. It helped and I went back to sleep.

In about half an hour or so, someone is going to come in my room and measure my blood pressure, test my pulse, record my temperature, and check how much oxygen is in my blood. Usually, my blood pressure is 112/60 but last time it was 146/70. I don't know what that means. When I have a thermometer in my mouth, I am focusing my attention on 98.8. Even though they do not take blood when I have a fever, they do end up taking my temperature several times, with several different devices from several different people. Annoying!

Also, within the hour, the nurse will fill 3 test tube vials with my blood. She does this from the tubing to my port so it doesn't hurt. There's a green one, and a blue one, and a lavender one. Also, annoying.

Being in the hospital

I have been in the hospital for 12 days now. It is exhausting. I am much weaker now than I was when I was admitted to the hospital. Physical therapists have come around twice to encourage my walking, but I have barely managed to sit with my feet flat on the ground, a per-step for standing. The occupational therapist visited me today and encouraged me to get in the wheelchair. I wheeled myself around the floor. I felt strong as I pushed myself around the hallway. Of course, by the time I got back to my room, my arms were very tired.

While wheeling myself around, I found myself more engaged in my experience than I had been for a while. Being in the hospital, on a constant stream of morphine, puts me in a semi-awake state where reality is slippery. I can close my eyes and enter a dream any time. When friends visit in the evening, I find myself struggling to stay awake partly because the strain of focusing on their conversation is fatiguing. I don't have to focus on anything else. I watch terrible television. I try to read, but I don't have enough focus and I get too confused. I feel like drawing would help, but I can't seem to start.

I am afraid that I just don't have too much to say or to add to conversation. Now, I have lost many things this year: my ability to walk, my hair (twice!), my ability to work, my focus, my appetite, being pain free, my independence, etc. My difficulty in conversation is as painful as my difficulty walking. I find it harder to connect to people and end up feeling isolated. I know other people probably also have trouble figuring out what to say to me, too. I always want to hear about everyone's adventures. I want all the people who can walk to have fun with it. I want all my friends to be bike riding, dancing, running around, taking relaxing showers (or baths), enjoying the weather, mushroom hunting, backpacking, cooking, and generally doing all of things I miss doing so badly.

On the other hand, I have more difficulty in empathically listening to folks talking about their day-to-day problems. I used to be a lot of people's "listener", where I would be a sounding board for their problems and worries. I would listen to dating problems, uncomfortable social circumstances, work situations, and family problems. Now, I have trouble listening because it requires so much focus. Also, so many problems seem small and petty. It seems like most of these problems would disappear if we all treated ourselves and the people around us with respect and compassion. I feel jealous sometimes because my biggest problem is cancer, and no amount of respect is going to get rid of it.

Speaking of cancer, I probably should update you on my health. The doctors took away the constant stream of morphine on Sunday. On Monday, they took away the "on demand" stream of morphine. Now, I take 5 little red pills (extended release morphine), an ocean-colored pill (quick acting morphine), or 4mL of morphine injected into the tubes that flow into my chest. I have had more pain lately, but I think it is mostly muscular, as I haven't been moving.

I have had 5 radiation treatments. My knee looks way less swollen than it was. I have more mobility when I squoosh from the hospital bed to the stretcher when I go to radiation. Dr K said that she is going to stay focused on my soft tissues but will have to go back and do radiation on part of my femur because she saw "something" in the bone. In the moment, I didn't ask what that meant. Today, I asked my oncologist and she said it isn't cancer, that it could be from drugs to stimulate white blood cells or something else. She wanted to blast them with radiation to be on the safe side.

One of the doctors on the treatment team thinks I may have an infection, so I am back on antibiotics. Also, I have been having a super crappy appetite and find myself barely eating. Nothing tastes good and my stomach feels off, like when I am hungover. I know eating is so important, but it is hard when it feels like I am forcing myself.

Needles!

If you have been following this blog, you may have noticed that I had been keeping a count on needles. I stopped after I had 100 needles, back in August. One reason was because I changed the program that I use to make blog entries and it isn't as good at labels. The other reason is that 100 needles in 8 months felt depressing and
I wasn't too sure that I wanted to keep track.

When I am in the hospital, I have my vitals checked a few times a day. The hospital has a policy that when I run a fever, the nurse takes blood from two different sites to check for infection. The nurse finds a vein and then fills 2 bottles with my blood. Then the nurse finds another spot and fills another 2 bottles. Nurses can only take blood from my right arm. My left arm is "protected" because the lumpectomy, back in July, included the removal of lymph nodes which puts me at risk for lymphedema, a condition where my arm would swell up.

I have been running a fever almost daily for at least 2 months now. When i first had the fever, I was in the hospital and nurses attempted to take blood from 2 sites on my arm daily. Eventually my doctors told me the fever is my body's reaction to the cancer.

This week in the hospital, I have been caught with a fever 5 or 6 times. Each time, the nurse needed a few tries to get blood. Tonight, for example, my nurse's first attempt failed when my blood didn't really flow, despite the needle in the vein. He got another nurse to help. Her first attempt failed when my vein just wouldn't hold still. Her next attempt was in my wrist and luckily the blood flowed well. Because of how difficult it was to get the blood, the nurses didn't try for a second site.

Tonight was pretty typical in terms of attempts. So, 3 needles multiplied by 5 nights is fifteen needles for blood cultures. Add to that my 2 blood thinner shots a day for the last 10 days and I have had 25 shots during this hospital stay. Sometimes these things get a little ridiculous.

Chemo #2, cocktail #3, day #2

I was having a hard time titling this post. I have had chemo for breast cancer. Then I had 1 round of chemo the day after I found out I had a sarcoma. A few weeks later, i had 4 chemo infusions in a row of a harsher formula. Then, another few weeks later, I had the same formula, but just one infusion and was equally sick.

Now, it has been a few more weeks, and it is a new chemo cocktail. I am less sick on these drugs. I think I wouldn't mind that I was so sick on the previous mix, if the cancer hadn't grown. I mean, what was the point of all that nausea and vomiting if it was not actually part of something moving me toward wellness? As I write, I realize that eliminating what doesn't work might help the doctors find out what does work.

Yesterday, my parents and Ken all agreed that I seemed to be feeling better than usual the day after chemo. Well, today, I am not feeling swell. My belly is a little flip-floppy and I am tired, but somehow unable to sleep deeply enough.

My nurse shut off the constant stream of morphine into my system. She started me on morphine tablets instead, to prepare me for going home. I can still press the morphine button and get a few milligrams, but it doesn't help the burning pain behind my knee or in my foot. I suspect that that pain relates to nerve stuff, which responds best to nervy drugs.

Yesterday, I opened many get well cards and gifts. Thank you all so, so much. It means so much to me. It sometimes takes me a while to send out a thank you card, but, honestly it takes me a while to do pretty much anything these days.

The doctor just came in and suggested that I get discharged Tuesday or Wednesday, to have enough time to switch from injecting morphine to controlling pain by pills alone. The treatment team is calculating how often I press the button and determining how many pills that equals.

Chemo + radiation + roommates

I had my third round of radiation yesterday. It was much easier to get on and off the radiation table. I was surprised at how much less my leg ached when we were done. A few hours later, I had a round of chemo. My nurse gave me breaks in the chemo to resume morphine for about an hour. I don't have as much pain and haven't needed as much morphine as I had.

Thursday night, after Ken left, I had a new roommate. She had been asked to be moved from her old room. She kept me up with her ranting, to me at first and then to her husband on the phone. Her family visited all day yesterday and were characters, to put it mildly. The patient yelled about everything. Her 25 year old nephew flirted with me explaining "really hot" ways to tie a scarf on my head. When it was time for her to be discharged, they couldn't find her shoes. My neighbor paced up and down the length of the room crying about how nothing works out for her. It turns out that the staff had released them with another family. They found another pair of shoes her size, which happened to match her pink hat perfectly. The shoes didn't fit because her feet were swollen from pacing. As the family left, they cheerfully shouted that they'd see me later. Gosh, I hope not.

Ken arrived later. Visitors cheer me up so much, especially when they don't mind my falling asleep during our conversation. We played scrabble and he won by about triple my points. When he left, another roommate took the bed next to mine.

I am exhausted today. I slept for a few hours and was awake for a few hours all night long. This weekend, we are working on getting me off the morphine and back on the pills. My favorite resident told me that he was moving to the another floor so I gave him one flowers crowding my table.

New chemo regimen

Dr Rubin and some of her team came to visit this morning. She said that I will start chemo tomorrow. It will be gemzar and taxotere ( like when I was on chemo for breast cancer. Dr. Rubin projected that I would have this chemo once every 21 days.

I feel like this process of switching to Radiation + chemo is like having the Air Force enter a battle previously managed only by an army. Fittingly, I received a remote control helicopter in the mail this morning from a good fried in Oregon.

Radiation!

This past weekend, the hospital staff primarily focused on pain control. I had some good visits with Ken and Marcy. My parents very sweetly drove 4-5 hours just to see me for 5 hours. It was wonderful.

On Monday, I met with radiation/oncologist Dr Komarnicky, her chief resident, and my parents to discuss our current plan. Based on it it, around 8 am, I had a planning CT scan whose information was fed directly into treatment planning computer in the Radiation/Oncology office. I transferred from the gurney to the treatment board, about the size and shape of a surfboard. It is not comfortable. My legs rested through spaces in a giant red sponge "spacerock". My lower back was uncomfortable against the surface, but we tried pillows. The room was dark with fluorescent green laser beams everywhere. It took about an hour to develop the initial imagery. Then transportation folks brought me back upstairs and I got to rest.

My professors from graduate school, Flossie Ierardi and Betty Hartzel, visited and brought a small teddy bear. My advisor sent a lovely bouquet of flowers. Later, Aunt Karen and Uncle Jack came with some more presents to cheer me up, including a pair of pajamas that I may wear tomorrow if I can.

Dr. Rubin came today. She seemed to have come up with a new drug to add. Chemo would not begin until Thursday or Friday following radiation to simplify our movement down the hall, as the PCA pump (morphine) already made things tricky.

Around 2pm, I returned to the Rad/Onc room for my first treatment. The nurses drew in Sharpie around my knee in really bold designs. We didn't tattoo them on because I had run out of morphine and was already feeling hypersensitive and achy. It only took about 15 more minutes before we headed back upstairs to my room.

I get radiation tomorrow and Friday, the monday - friday for the next several weeks. This weekend I'm going to try to find folks willing to help with a daily ride and stair support. I cannot recall chemo's schedule.

I am going to bed soon. I am drenched in sweat and don't know how to cool off.

Hints for how to talk to sick folks

I know it is hard to talk to people who are going through rough times. Many folks have a tendency to avoid sick people because doing so helps them to avoid the anxiety associated with sickness, the changes in their friend, and the constant coping with the unknown.

Here are some tips, at least for talking to me:

• Do not ignore me.
• Ask me how I am only if you really want to know.
• You can say, "I don't know what to say. . ." when you don't know what to say
• Ask whether I need to process stuff or if I would prefer distraction.
• Ask before hugging or massaging
• Text me before you call, to check the timing.
• When I cry, offer hugs.
• Tell me about yourself. I am a great listener.
• Follow my lead when it comes to where I am physically 
• Offer to play games, make art, do puzzles, etc.
• Try to include me in activities. I cannot walk, but I can use my upper body

I am too tired now to add more to the list. I am trying to alleviate my anxiety at coping with anxious friends and family. Love you all. 

CT scans

Yesterday, I had a fantastic visit with my godmother, Peggy. She distracted me from my hunger as I was not allowed to eat from Friday at midnight until Saturday at 3pm. I couldn't eat or drink because of being scheduled for scans. Unfortunately, the scans were not scheduled for first thing in the morning. The process of getting CT scans of my chest, abdomen, pelvis, and left leg only took about an hour and fifteen minutes, including waiting for the elevator for about 25 minutes. Ken came in the afternoon and stayed until night.

The nurses also hooked me up to a PCA pump which delivers morphine constantly into my system. When I have breakthrough pain, I can press a button and get even more morphine. It works pretty good, but it seems less effective than the oxycodone pills. The pump's alarm has gone off half a dozen times since last night. It took the nurses sometimes 15 minutes to shut off the loud ringing. This morning, the alarm on the PCA pump went off again. The pump was out of morphine. My nurse explained that the pharmacy was apparently out of morphine(!) and i would have to be on other pain meds until they found more.

Dr. Kane, who works closely with my oncologist, came to discuss my care. She was very concerned that my pain was not better controlled and that my left knee was still so swollen. She also shared that the preliminary results from the scans were that the sarcoma and the lung nodules seem to have gotten bigger.

Obviously, this is not good news. This scares the bejesus out of me. A few of you read this blog and write supportive emails. I need that. This is hard and I am so tired of having cancer. I am so tired of being in pain. I am exhausted from this year. Dr. Kane said that Dr Rubin was likely to change her approach, but I do not know what is being considered. I know this news is upsetting, but I cannot process your feelings with you. I can barely process my own feelings.

Location:Hospital

Leaving NJ, Back at Hahnemann University Hospital

Yesterday, my mother, Athena, and I took the long trip from North Jersey to Philadelphia. I think this entry goes into kind of extreme details in some places. I am blaming this on sleep deprivation, drugs, and physical and psychological pain.

It was difficult for my family to find a way for me to transition from the wheelchair to the basement steps. We tried a speaker, but it was too big and hard to manipulate under the wheelchair. Then we tried my 2 year old niece's step stool, but it was way too small. My butt has shrunk, but it still wouldn't have fit. Then, we tried a milk crate and it was perfect. I scooted from the wheelchair to the milk crate and down the steps. Athena supported my foot along the way. These steps were easier than my apartment steps, which are longer and steeper. It was even a fairly easy transition from the steps back into the wheelchair.

From there, it was an easy move into the car. I sat across the backseat with my left leg supported by pillows and occasionally held in my hands. The 2 hours or so in the car were painful, as every bump, acceleration, de-acceleration, turn, etc put pressure on my leg. I was exhausted when we pulled into the parking lot by Dr. Rubin's office.

Dr. Rubin took one look at my leg and expressed concern at the swelling. She suggested that we have scans on my chest and on my leg to figure out what was happening. She mentioned the possibility of amputation as a means for controlling pain and swelling. When she left the room, I cried and mom comforted me. I don't think it is that bad. I want to keep my leg.

After sleeping on it, I realize that the last 2 times she has seen my knee were after going down stairs to get in. Before that, she saw my leg when I was in the hospital for days, without walking on it. It is particularly swollen following my trip from my parents' house. It is more swollen than it was a few days ago. My parents' house is so much bigger than my apartment that when I used the walker, I might have over extended myself. I really want to keep my leg. I might be rationalizing it's current swelling.

After Dr. Rubin's scary discussion, we headed across the street to the hospital to get admitted. We had to wait to complete the admission interview because some one else got there right before us. Once I was in there, I anticipated questions (i.e. I don't have glasses, a hearing aid, or dentures and I don't have diabetes, heart disease, or COPD). The nurse laughed saying she could give me the paperwork to fill out instead of having me wait. I thought that was reasonable. Afterwards, we waited half an hour or so for a bed. Instead of waiting even longer, Mom "wheeled" me up to the 15th floor. I got a bed by the window; for the first time ever, I actually have a view of the city (instead of a wall).

From when I had last been on the couch at my parents' house at 11:30am, I had been uncomfortable. When I had been in in the wheelchair for about an hour (from 2pm to 3pm, at Dr. Rubin's), my leg and hip became tired. At 6 something, when I finally got to lie down in a bed, I felt so good. Athena commented that I looked instantly in less pain. Ken joined us and it was so good to see him. Marcy came and brought a ridiculously delicious turkey sandwich. Mom met Marcy before heading out with Athena. I had been half awake, half asleep for hours.

Heading back to Philly

Today I spoke with Maggie, the scheduler at my oncologist's office, and she said that I was to come to the office tomorrow and that I should bring a bag because I was probably getting hospitalized from there.

I have been camped out on my parents' couch for the last few days. I am not in Dad's chair anymore and I am not in Mom's chair either. I can't really tell whose seating I disrupt, but it doesn't really matter as we all seem to find a place.

I had some lovely visits with my great-aunts Thea Mary and Thea Sophie on Sunday and my "Aunt" Lorraine and "Aunt" Linda on Monday. The visits took place around the kitchen table for hours and really stretched my limits in sitting in my wheelchair. In my apartment, I sat in my wheelchair for only about an hour a day. It makes sense that it took a few days to recover. I am in less pain today than I was on Tuesday or Wednesday.

I realize as I am writing that I am too sleepy to write much more.

Home with my family

I spent Friday resting and settling into my parents' house. The car ride from Philly to North Jersey was rough on me. Getting from the car into the house was even rougher. The pain drugs had worn off. I lacked the strength to feel confident in my movements.

The worst part was getting pulled over the threshold in my wheelchair. I really should have used a walker, but I was too tired (at 4am) to think of it. As we bounced over it, I felt as though my leg had been ripped off. I think the jolt, plus gravity, plus not having the legs attached to the wheelchair (so my leg was just dangling) allowed my leg to straighten a little. It has been stuck at about a 90 degree angle since July and has some scar tissue because of the immobility. It took a while for the pain to subside enough to move further into the house.

I realize that so much of the pain that I was in was because I missed 2 of my long-acting pain meds and several doses of muscle relaxants and nerve pain meds. I am glad to know that I do need my dosages to be functional. The doctors at the hospital explained that the complex process to allow me to take meds from home.

Anyway, I am at my parents' house. My youngest brother, Jimmy, and youngest sister, Athena, still live here. My oldest sister, Kathy, lives a few miles away and visits daily with my 2 year old niece, Victoria. Someone is always around which is great. Because there are so many folks, their "around-ness" does not mean they are available to help me. Jimmy threw a disc out in his back and has been complaining about terrible pain in his leg. I empathize, but I feel weird because he can walk. Dad gets tired from his medications. Kathy has been running back and forth to the hospital to visit Thomas. Mom seems exhausting managing everyone.

I try to be as independent as I can be. Wheeling myself on carpet requires more effort, though. The distance from the chair I have been staying in and the bathroom is probably 4x the distance as in my apartment. I am glad that I am not recovering from chemo though. I think that would be challenging.

It is weird being home. I moved out when I went to college in Oregon. I have lived on my own or with friends for almost half my life. Still, coming home, I fall into those old patterns and roles with my family. I felt frustrated today when I told a story and no one responded. At home, I might always be the middle child who struggles to feel like I get enough attention. Also, I have been in charge of remote control for about an hour and a half in the last 2 days, not counting when it has been placed near me while I slept.

Longest day ever

My parents left around 6am today to take me to chemo and then to take me to north jersey with them afterwards. I decided to write an hour by hour update of our day.

7:00 am: my parent say that they are an hour and a half away. I warn them of upcoming traffic and direct them to take the Walt Whitman Bridge, based on Ken's traffic knowledge, not mine.

8:00am: take my morning mix of drugs

9:15am: Ken helps me down the steps. My parents bring a few bags of stuff down and finish loading car.

10am: We park car and my parents unload wheelchair. As they struggle, in the rain, to put the legs on, I say to forget it, as I won't need them once I am in chemo.

11am: I get called back for my vitals to be measured. The nurse took blood because she was concerned about yesterday's fever. My blood counts came back too low for me to have chemo. The nurse directs us to an exam room.

12pm: We are still waiting to see the doctor.

1pm: Still waiting. Good thing we were almost on time.

2-2:20pm: Dr. Rubin came in and we discussed 1/week v. 4-in-a-row and concluded that we might try 4-in-a-row again, as it took me 6 days to fully recover either way and I may as well have bang for my buck. She said she did not like how swollen my knee was. She added that I needed to get a blood transfusion, across the street at Hahnemann University Hospital. She explained that I needed to be admitted to the hospital to get blood, because of Red Cross rules. Dr. Rubin tells us to stay in the room while her staff lets the hospital know my situation and while we wait for a bed to open up.

3pm: We leave Dr. Rubin's office, walk to Broad and Vine, cross the street, take the elevator to the 4th floor, Direct Admissions. We wait for nearly an hour to register with those folks. My leg is throbbing; it usually is propped up on a few pillows and pointing down in a wheelchair is taking its toll. Dad drives me up the 15th floor, instead of waiting for Transportation because that might take a while, according to the admissions people. Also, I am the rare person who gets every bracelet: fall risk (yellow), drug allergy (red), latex allergy (green), and no-bp-or-needle-this-arm (violet), though the second one today.

4pm: Dr Craft comes and is concerned about fever. I tell him about my fevers. Then my family loudly explains that I have to leave tonight. The nurse takes a ton of blood: several vials from my port and a number from a vein in my inner arm. She sends in another nurse to get blood from another site; all this blood taking is driving my mother crazy as she wants to see me getting blood.

5pm: waiting for blood.

6pm: waiting for blood.

7pm: The nurse starts my transfusion bag; it is scheduled to empty in an hour. My vital signs show no fever, great blood pressure, and slightly high pulse. I get medications. Dad goes to sleep.

9pm Blood transfusion bag #2 is hooked up. I am starting to feel good. Maybe it's the blood (mmmm, type A negative!) or the 1/3 of a decidedly undelicious spaghetti and meatball dinner the nurse ordered for me and I ate.

11pm?: blood bag #3 is hooked up. Almost done!

12am: blood bag #4 starts.

1:25am: the transfusion machine is beeping. It is mostly empty and my body is full of beautiful hemoglobin-rich blood. We are all packed up; we just need our discharge papers and for me to be disconnected. Dad just woke up.

Early waking musings about sleep

Once again, I am awake at slightly weird hours, 5 am. This next paragraph is me wondering, in writing, how much sleep I got yesterday. You can skip it.

I woke up pretty early yesterday, too. I had a short nap around 3pm, during my friend Nicole's visit. Later, my friend Monica came by and we split a roast beef sandwich. I fell asleep toward the end of her visit, too. I think I was awake and asleep until around 11, because I wanted to commit to staying awake for my midnight drugs. I watched the entire season of Portlandia, which has its moments and could have used more of them.

It took me about 40 minutes to take my pills and to give myself a shot, mostly because I am trying to space them out a little to make it easier on my belly, nurse tip. I don't think I got into my bed until 2pm because it took time to pack my "switching rooms" bag and I decided to pack a big water bottle and a banana, just in case.

When I first woke up, I had some water and the banana and it felt so good. It felt like I had been trekking in mountains and taking a much needed break, instead of sleeping. I am probably dehydrated. It is hard to tell. Typically, dehydration is apparent when pee is a darker color, but the chemo that I am on makes my urine a bright, scary orange. I try not to look.

I wonder if it even matters how much I am sleeping. I mean, some days, post chemo, I have slept over 10 or 12 hours. On my previous dosage of long-acting OxyContin, I would have micro naps where I might fall asleep in the midst of conversation several times for 30 seconds to a minute. Most people are too polite to say something, but it is a uniquely awkward feeling to wake up again while talking to someone. These situations happened mostly in the hospital while aides were checking my vitals at 4 am (because that's reasonable?!) or during rounds or pre-rounds between 6:45 and 7:30 am (because that is reasonable?!). Eh, serves 'em right if they are going to try to talk to me before it is reasonable.

Feeling better, by the numbers

First, thank you, everyone, for your encouragement and support. It means the world to me and helps me to keep up my spirits. Please keep emails, comments, texts, and cards coming. Also, I apologize if I am slow at responding; I am busy napping and doing everything else necessary to get Sneaky to leave and to repair the damage his existence caused.

Next: the update.
"Grown ups like numbers." The Little Prince, by Antoine Saint-Exupery

I am going to use numbers to explain stuff, to satisfy the grown ups.

It has been 6 days since my last chemo treatment. This treatment is way tougher than the breast cancer chemo that I received earlier this year. Today is the first day that I haven't gagged or retched.

During PT today, I went for a walk from my living room to my front door and back, about 25 feet. My pulse went 10 points, to 118, from the effort.

Today, so far, I ate: most of a can of chicken soup (240 cal), a Popsicle (80 cal) and half a bowl of oatmeal with extra raisins (160 cal). Those approximately 480 calories are more than I consumed Friday, Saturday, and Sunday combined.

My knee is less swollen and my foot looks more swollen. My left knee is approximately 19" in circumference, while my right knee is approximately 15" around. My left foot is about an inch bigger than my left no matter how I measure it.




I don't want to talk about hospital bills or anything money-wise.

Chemo recovery

I am pretty best up with this chemo. There is a part of me wondering if it makes more sense to be in the hospital and get 4 done at a time instead of having 4 terrible weekends. On the one hand, I sleep when I am at home. On the other hand, I had IV fluids in the hospital.

I cannot really discuss the nausea right now, except to say that it is ever present. I am pretty sure that I am dehydrated. Last night, I threw up ginger ale and iced tea. I have kept down apple, melon, a handful of crackers, and half a smoothie. When I had the 4-chemo-in-a-row, I did not eat from Thursday until Sunday,and then I ate very minimally. I am eating way more, but I have been sicker.

Cancer is so awful and this chemo is exhausting. I miss being awake for most of the day. I miss walking. I have used a commode on the side of my bed because I did not have the energy to get myself to the bathroom. I feel bad for the people who have emptied it for me. Yesterday, I made an extra effort to use the bathroom ( which really involves using a walker inside of the bathroom).

I can't wait until I feel a little better. A visiting nurse is coming today. I hope she has some ideas that help.

Post chemo

I had chemo yesterday. That wasn't the plan. I was just going for a check up. Then Dr. Rubin asked if I wanted to have 4 chemo treatments in the hospital in a row with a 3 week break or one a week. After weighing it out, 1 a week seemed better as being in the hospital is awful and means that I won't rest, despite extreme exhaustion .
So we began treatment yesterday. Luckily, my mother and baby sister were visiting me. They helped me so much! When we got back to my apartment, I did not think I could go up the steps, but I managed to do so, with several rests. Ken helped me up the stairs and Athena got my prescriptions.

Last night I felt ok. Today I feel so awful. There are drugs for pain and drugs for nausea, thank god. I wish there was a drug for anti-crappy-chemo-hangover. That'd be awesome. I haven't been out of bed yet and it is nearly 7pm.

My sister picked up my mail and read me some beautiful letters. Eric and Erin sent me some books of short stories. I had Athena read them to me. Bunky has hardly left my side, sometimes to my annoyance.


Oh, and very exciting news: my big sister had a son today, making me Aunty again. Congratulations! To her and her husband.

So, i had a doctor's appointment on Tuesday at my primary care specialist. Is that right?
Well, the doctor I go to for everything, before the year where I needed a referral to see anyone. I am not sure why, but his office wanted me to come in. It may have had to do with being in the hospital.

As I type, there have already brn so many auto-corrects, or wrong worts. I decided that I am non going to correctèr these errors. It will be window intio my mind. I am sorry.

So, I had Kas and Jen come help. First I explained the huh plan of 1) scorching from wheelchair to stepstiup. The, I explainedrfv moving from the step nipppiik. I explained someone would be gently holding my foot by the sock, so It didn't hit the steps and so it moved with me, as I do not have much control over my left foot.after the explanation, we actually got me downstairs. I had to send Jen back pnfor a pillow that was forgotten. My friends quickly snapped the legs on and Kas steered medoodddoddpk well down the sidewalk the 2 blocks to dr B's office.

The 2 steps outside presented a challenge. I strod and got support in making it up the rrpr the firth step, but Jen picked me up and carried me in. I didn't realizieie that that's what wasnhappeknneqa. We waited a while before being called back. When the doctor came into my room, he had to wake up. Basically I verbalized the hospital discharge papers. He explained dthat he would be happy to give me prescription refills and referrals over the phone. He could hacve had this whole talk on the phone.

Afterwards, my frieds got me inside in reverse. Both Kas and Jen were thoughtful in. Ngetting me back up, though I was terribly cranky as omy leg still throbbed. I got an ice pack and napped. Emily woke me to get paperwork to drop off to HR (but that is another story).

Later my friend Hollis came over to do some powerful listening.
Ken came over bringing a calzone and a stromboli. We watched movies and I nappishly missed some parts. Afterwards, Ken shaved my head. My hair was falling
Out so much that I had bald spot and hair in all My food. Eew.

Thanks for plowing threw these eras.

Location:E Passyunk Ave,Philadelphia,United States

Looking good

Many friends and family members who come to see me tell me, with some surprise, that I look good. They expect me to appear more sickly after fighting cancer for 9 months. I am pretty drowsy in the moment, but I figured I would share a photo of myself with you, so that you could revise any "sickly images" of me from your mind.




Ok, it isn't the best pic, but I think it is ok to share.

Although, I am starting to lose my hair from chemo 2 weeks ago. Last time, my head-shaving party was around day 19 following chemo. I am likely to shave it again soon; I have little 1.5 inch hairs sprinkled over my pillows, towels and floor. I really don't want them in my cereal or my soup. Luckily, I was flaky about returning Rich his clippers back in February and I still have them.

Before and after pictures are going to be fairly boring, compared to before, but I will still try to share them with you.

Some side effect struggles

I have a hard time with so many things. Right now, I am awake at 3 am and I feel ok writing about some daily struggles. I just woke up to pee. Last night, I peed 5 times in less than 8 hours. I haven't slept all the way through the night in months. I don't even remember what that's like.

Dry mouth is a side effect of most of the medications that I am taking. Sipping water helps, but only for a few minutes. My amazing visiting nurse suggested Biotene products and a friend picked up the gel for me. It tastes like circus peanuts and feels like a mouthful of gel. It helps, but it also makes me gag.

I have been adjusting my medications as the pain medications were all doubled the last time I was in the hospital. The doctors doubled it because chemo increased the pain, but I don't seem to need it as high right now. I am on a long acting pain killer, OxyContin, and a quick-acting pain medication, Oxycodone. They make mewfuzzy. Typically, I read with one eye closed because it is so difficult to focus my eyes. I have gotten used to seeing double, as I write these blog entries. Thank goodness for auto-correct, or you would have difficulty following my thoughts. Even so, my fingers have a tendency to "fall" or "jump" against the letters as I unspool my thoughts into words and phrases. I have spent over an hour writing a blog entry or an email of a few paragraphs.

I have an equally difficult time with writing on paper. It starts out okay, but, after a few minutes it decays. I don't recognize my handwriting; it is either cramped and tiny or the letters are wide and loose. Either way, my notes to myself are rarely useful.

I have a similar trouble with memory, logic, and other cognitive functions. At certain times of day (approximately 2 hours after taking the long acting drugs 3 times a day), I have trouble retaining conversations. Sometimes, I won't even remember that I spoke to someone. Other times, I can't remember what was said. I think sometimes people think that I am messing with them. I have many moments of being "super literal" where I have trouble understanding figures of speech.

Thinking can be so hard that I ask my helpers to not ask me to make basic decisions and to treat me like a small child at mealtime, where food is presented to me without much input from me. It is almost as important to listen to me as it can be to ignore me. My boyfriend had asked several times whether he should get me a hand-held shower head. I refused repeatedly. He got it anyway, and it seems like it will make things a whole lot easier. Lucky for me, Ken is super logical, so he can make up for my lack of skills right now. Also, I seem to remember that I used to be more logical than most before all the drugs.

As you might have noticed I stopped counting needles once it got over 100. I give myself 2 needles in my belly every day. I hate it. My belly has so many tiny dots across it, marking the last month or so.

Well, at least the hallucinations seem to have stopped.

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.

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.

Too many needles

I have been having trouble sleeping at night in the hospital. Tonight, I asked for ambien to help me sleep. About an hour or so later, I was woken up to have my vitals measured. Turns out, I had a fever of 102. The aide told my nurse who contacted one of the residents on my case. She ordered the same tests from the day before: 2 sets of bottles filled with blood from 2 different sites (to prevent false positives) and another urine analysis.

I became upset as my nurse starts looking for my veins. She finds one and quickly fills the bottles. One set done, one more to go. The next vein is harder for her to find but eventually I feel the pinch of the needle. Then I feel the needle squirm and wiggle. I am having a hard time with these sensations and the nurse pulls out the needle. She finds a third spot on my arm and I feel the pinch of the needle. Then I feel the pressure from the nurse pushing the needle into the being. Blood isn't coming out. She calls another nurse who also has trouble getting blood. They pull out that needle. I ask for a break before continuing. The nurse tells me that they will have to do the testing with just one set of bottles. Yay! I am frustrated and upset, but at least I am not being stuck with more needles.

Needle count: 101!

This is depressing. I miss feeling better, being healthy.

Battle plan for destroying Sneaky

Dr Rubin, my oncologist, just came into my hospital room and explained her plan to me. I will be getting chemo in the hospital for 3 days straight to shrink Sneaky, the tumor in my leg. Then, we will continue on a more spaced apart way. We don't have a plan for total number of treatments. We are hoping to shrink it to oblivion, like we did with breast cancer. After chemo, we will likely have radiation and surgery, though that's not definite and may relate to how badly we destroy Sneaky.

At the end of that, I will be getting a dosage of Herceptin, a protein that inhibits the growth of the kind of breast cancer that I had. I am past due for Herceptin. I was supposed to get it last week, but was in the hospital.

I feel like I am entering this terrible battle for my life and my leg. I am assembling an army to help me. I have Dr. Rubin and Dr. Lackman directing and coordinating the attacks. I have my other doctors aiming the big guns and the nurses loading them up. I need other help from you.

If you pray, please pray that chemo destroys this sarcoma.
If you practice Reiki, please send some to me.
If you are an artist, create an image of Sneaky's demise.
If you are a musician, create a soundtrack for this epic battle.
If you can create an excellent guided imagery meditation to help me visualize the annihilation of Sneaky, please send it to me. Or come here, and guide me through it
in person.
If you are funny, make me laugh.
If you are a good listener, sit with me while I cry, but don't let me stay there long.
If you are good company, sit with me and remind me that it will be ok. Tell me about a time in the future when I forget how painful 2012 is.
If you have other magical healing gifts, please share them with me.

Needle Count: 97
I feel like we should celebrate when we get to 100!