Monday, October 29, 2012

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.

Saturday, October 27, 2012

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.

Thursday, October 25, 2012

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.

Tuesday, October 23, 2012

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.


Monday, October 22, 2012

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.

Sunday, October 21, 2012

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.



Saturday, October 20, 2012

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.


Thursday, October 18, 2012

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.



Wednesday, October 17, 2012

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.

Sunday, October 14, 2012

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

Saturday, October 13, 2012

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.

Thursday, October 11, 2012

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.

Sunday, October 7, 2012

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.

Thursday, October 4, 2012

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.

Wednesday, October 3, 2012

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.

Tuesday, October 2, 2012

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.