Post chemo #4

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

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

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

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

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

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

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

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

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.

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.

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!

Stitches out

Today I got my stitches out (from when Dr. Junkin took out the cyst). It felt uncomfortable, but it was okay. By the time I felt like I needed a break, I only had 1 stitch to go.  Also, I don't have to wear the immobilizer anymore. Yay!  Dr. Junkin wants me to see an orthopedic oncologist in New Jersey. He suggested that radiation might be more effective than chemo. I hope so. 

Otherwise, I had 3 very nice visits from different friends. I can't explain how helpful these visits are. I am so isolated, even in my own apartment. I will be starting physical therapy next week, also.

Today, I didn't cry at all. I may be overwhelmed and exhausted, but I can do this. Having cancer is hard, but each moment is something I can handle. Sure, it'd be so much more handle-able if I wasn't in pain, but I can't control that. I am taking a very short, minute-by-minute view of my life. I can pretty much accept or tolerate anything for a minute.

Tired and nauseous

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

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

Cancer 3, Chemo #1

I am lounging with my sister following chemo today. I was in treatment from around 10:30 am until around 3pm.  I got very tired, but I had trouble resting because my leg hurt too much.

I have spent most of the last 24 hours crying on and off about this new experience and the return to chemo. The other parts of the day were spent staring off into space.

I don't have energy to share more.

Needle Count: 73

back at work

I haven't been working a lot in the last two weeks. I was out 5/31 and 6/1 because of being in the hospital to get my knee drained. I was out 6/4 - 6/7 because of chemo and recovery. Last week, I was out 6/13 - 6/15 because of doctors' appointments related to my stupid knee cyst. Since the beginning of the month, my knee has been drained of nearly 160 cc of fluid - that's approximately: 5 oz, about the size of those little soy sauce bottles on the table in asian restaurants. Yick!

Anyway, I'm back at work and the atmosphere is weird, since we are supposed to find out about layoffs today. Great! Just what I need to make my year extra-splashy-super-exciting!

ms crankypants

I am grumpy today. I couldn't sleep last night because I was in pain. My back, hips, and legs hurt so much that whenever I moved, I woke up. I think the pain is from neupogen, a drug that stimulates white blood cell production in my bones. According to my last bill, insurance pays $4,200 for this injection. For that much money, you'd think someone might have figured out a way for the drug to not cause pain. But I digress

I took percoset and ibuprofen before bed, then took them again a few hours later, and again a few hours after that. I propped myself up with blankets and pillows. I moved from the sofa bed, to my comfy bed, back to the sofa bed. I also used a heating pad and ice packs. Nothing seemed to work for long. My left calf hurts to the touch; even pillows or the mattress underneath it hurts.

At some point in the night, I stopped trying to sleep. Later, I stopped trying to be comfortable and started trying to feel okay with how my body was feeling. I noticed that when my body is most uncomfortable, my thoughts become uncomfortable and I think about things that I cannot do anything about, particularly in the dead spots of the night. I worry about my job, paying bills, cancer treatment, and that the pain is indicative of Something Wrong. I worry about my friends and family. I worry that bugs are coming into my apartment from the window that won't close all the way. I worry about not being able to have kids. I worry about the kids and families who come to me for therapy. I worry that I forgot something terribly important to do. Worrying isn't helpful, so I put on a Simpsons dvd and tried to stay awake through a whole episode at a time. It got lighter out and I had seen most of each episode on the dvd. I was too tired to get up to change the dvd and I was too tired to think. I sat without thoughts or moving until my second alarm went off.

I had trouble getting myself moving, both literally and figuratively. I couldn't walk very well and I wasn't very motivated to get ready for work. I also seemed to struggle with my basic morning routine. I had to sit down to dry myself after my shower because I didn't have the energy to stand. I made myself a smoothie in a cup that afterward seemed to have soap in it. I couldn't find my umbrella or a subway token. I kept dropping things that I had to leave on the floor because my body was not ok with bending down.  I took a percoset and ibuprofen before taking the bus to work.

I feel a little overwhelmed with the pain right now. I am also a little anxious about the upcoming doctors' appointments this week. Tomorrow, I have an MRI on my breasts to determine the size, shape, and location of Lumpy, post-chemo. Thursday, I meet with my orthopedic doctor regarding Lumpy II. I hope that I remember to be grateful for my health when it is fully restored. I hope I remember to enjoy weeks where I do not have any doctors' appointments. It feels like it's been forever since I've had a week that did not involve talking to a medical professional.

Chemo #6 recovery

I am still recovering from Chemo on Monday. I am exhausted, but I have been having trouble sleeping because of my leg hurting. Luckily, my neighbor got a prescription for 100 percosets filled. I used to have to get a new prescription every time I ran out. These should last me for a while.

I am monitoring my temperature. Yesterday, I was low; It ranged from 95.9 to 97.8. That's not bad. Today, it's been edging to 99.9, with a terrible headache. I am going to try drinking more water.

I have been on and off nauseous today, despite the anti-nausea pills. Water tastes bad, like ocean water sitting in a rusty can. I have been trying watered down Gatorade and watered down teas, instead. I was able to leave my place today. I got a chai and bread with butter and jam. I didn't finish the bread or the tea, but I tried.

Chemo #6

Chemo is done. I had #6 today. I am super tired.
Lumpy II is achy. I have to start wearing supports to help with swelling.
Also, yay! Chemo is done!
Next stops:

• Meet with orthopedic doc
• Get an MRI on lumpy
• Get a mammogram
• Based on all that, get surgery scheduled

Also, in about 3 weeks, I am celebrating.
Needle count: 35
Touch count: 18

In the hospital

I took a cab to chemo this morning around 11am. The waiting room was super busy. My nurses brought me back to the chemo room to check my vitals. Sam stuck my port to draw blood to check blood counts. After about an hour she sent me to the waiting room to talk to Dr.Rubin because she wanted to talk with me before chemo.

She examined my leg and said that it was much more swollen than last time she saw it. I told her about my appointment with Dr. Lind yesterday. She added that the blood in the cyst might be from a small bump that I may have not noticed. She called the vascular specialist who suggested that I be admitted to the hospital for surgery.

It took a few hours to get admitted and to be settled into a room. As they wheeled me to the elevators, we ran into Ken who had brought me snacks. After that, I met with the floor nurse, Jen, who took my vitals again. I met with the 3rd year med student who did another history of me and took my vitals for the 4th time today. I also met with the surgical team, who did another history. The resident had been on the team that had put in my port. He explained that the cyst seemed to be pressing against blood vessels and that I would need surgery for it. The cyst would refill I immediately if it was drained. He said that the surgery wold be tomorrow afternoon, but that he needed to confirm with the vascular surgeon first. I can't eat after midnight until after surgery.

The nurse just replaced the port access needle with a sturdier one, involving lots of blood. Ick.

I am at Hahnemann Hospital. Room 1576. I dont know how long i will be here or what exactly will happen. I am glad I bring so many fun things to chemo to entertain myself.

My parents said they are coming tomorrow.

Needle count: 32
Touch count: 17

my day to day

I thought it might be useful if I describe my day to day experiences.

Usually I wake up around 9am. I go to the bathroom and wash up. Then I go sit in the kitchen for a while to rest because I'm tired again. I take some ibuprofen and take my temperature.

Around 10, I get up again. Today, I cleared off the table and moved things from the kitchen into the living room. When I got there, I had to rest a little bit. I used my awesome new handheld vacuum cleaner on the massive amounts of cat hair on my sofabed for a few minutes and rested for a few minutes alternately for about 20 minutes. I only got through half of the bed, but it made a huge difference.

Then I washed up dishes that had piled up over the week. Afterwards, I rested. Then, I showered and changed. I rested for a few minutes after that, too. I put on some make up (because I look so much healthier with eyebrows) and arranged my wig.

I left my house around 11:30 and walked up the street to get some food. I'd been craving bread and butter and had some with coffee. I had to stop back at my house because it made my stomach sick.

Then, around 1pm,  I took the bus to work. At work, I see between 3 and 5 children, teenagers, and families in a day. I try to rest in between sessions, but I can't always do it. By the time I leave at 6pm, I'm exhausted waiting for the bus.

The bus takes about 45 minutes to get me home (around quarter after 7). I might pick up some take out or heat something up when I come in. I put on a movie, take ibuprofen, and try to eat at least half my food before I fall sleep, but I can't always do that. The movie-sleep is fitful while I try to get comfortable.

I usually fall asleep on my sofa bed somewhere between 11pm and midnight. I wake up around 3am because the ibuprofen and/or percoset has worn off by then. I sometimes watch a movie again, read, or sketch for a few hours before I fall back to sleep.

little fever

"Perhaps I had a little fever, too. One can't live with one's finger everlastingly on one's pulse."                                         Joseph Conrad, Heart of Darkness

This weekend, amidst the fun, I had a fever of 102. I called the chemo doctor's office yesterday to report it. Sam, my favorite nurse, scolded me for not calling about it on the weekend. She said that if I had any other high temperatures, I needed to call immediately. I felt bad, but it's hard to feel motivated to call in the middle of the night when I don't feel good. I live alone and I don't have anyone else who can call for me.

Last night, I didn't feel great when I came home from work. I had a temperature of 99.9. I called the nurse who left a message for my doctor. Randi, my other favorite nurse, called me today for the details. I haven't run anything high today, but I'm achy all over, I'm exhausted, and my underarms are sore. I take ibuprofen regularly, so it might be masking a fever. I'm always tired and achy though. Randi said that I need to go in first thing in the morning to get a blood culture done to find out why my temperature's been high.

look good, feel better

I am doing well after my last chemo on Thursday. I'm still tired, but luckily I don't have anything to do at work today, so it doesn't really matter.

Yesterday, I attended look good, feel better, a program aimed at helping women with cancer deal with the cosmetic side effects of treatment. I found out about it through my oncologist's office, though I also knew the social worker involved in it. There were only 5 other cancer patients in the group; one was close to my age and the others were much older. Two cosmetologists assisted and educated us on basic skincare and applying the fancy new donated makeup. Apparently, the lipstick that I got in my bag was worth $40. Nice! It was helpful finding out ways to make my eyebrows not look completely missing.

I also received a new wig. This one looks more like my natural hair and is long and curly at the ends. I had fun trying on the different wigs.

Chemo #5

"It's remarkable," said my doc after examining my breast. She couldn't feel the lump!! Yay! I am almost done with chemo. I only have one more to go! I see the light at the end of this tunnel, though there's still surgery and radiation to come. I am exhausted and have been sleeping on and off since I finished treatment on Thursday. I have a few new bites; maybe I do have bed bugs. The doc said something about fixing my knee, but I don't recall what it was. I fell asleep a few times during the exam. I think she was suggesting surgery for the cyst during the surgery to take out the breast lump. I could be wrong though. I'll call on Monday to find out. Also, I am having hot flashes, what with the menopause. If you know of any ways to deal with them, please let me know.



needle count: 28
touch count: 16

Chemo #5 - just before

Chemo is like taking a trip on an airplane with luxurious seats and no food service. I know I need to wear layers and bring snacks. I bring some entertainment so I don't get too stir crazy. I get anxious about coming on time. Once it begins, there's nothing to do but sit back and relax. It's going to start in an hour. Today I will find out what will happen with Lumpy 2 (bakery's cyst). I hope that they can just lance it, but I have a sneaking feeling that I might have to wait till after chemo is completely done. I hope my feeling is wrong.

chemo #5 in 2 more days

I thought I might list what I do before chemo to get myself ready. I'm a little anxious about it.

I try to go outside and have as much fun as much as possible, as I might be sleeping for a few days. Tonight, I'm going to see Feist. It should be awesome.

I try to stock up on food, particularly really easy to make soups and nutrition bars. I try to minimize dairy, especially in the few days following chemo because it doesn't seem to sit ok with my stomach. I have frozen fruit, almond milk, and coconut milk for smoothies. I also stock up on cat supplies, because it wouldn't do to have to get some when I'm not feeling great.

I do my dishes and try to straighten up my place as much as I can. It's pretty much only going to get messier for the next week, so I like to start out with a minimal of mess.

I pack my backpack. Chemo takes between 4 and 7 hours; I like to have a variety of things with me to distract and soothe me. Of course, I'm likely to fall asleep most of the time, anyway.
kind of in order of importance:

• my bag, with my insurance card (in case they ask) and my debit card and ID
• subway token, cabfare, or definite ride to chemo (ok, that last one won't fit in the backpack)
• fully charged cell phone
• warm stuff (it gets chilly)
• a jacket
• scarf
• a hat
• arm warmers
• snacks
• granola bar
• cut up fruit and vegetables
• maybe a smoothie
• water, gatorade, etc.
• music (thanks, Ken!)
• lip balm and hand lotion (it's dry there)
• Lidocaine (to numb the port)
• note with new questions in it (so I don't forget to ask the doc stuff)
• sketchbook and pen (thanks, Melinda!)
• needlepoint: mandalas, thread, needle, scissors
• Kindle (thanks, Mom!)

I'm debating whether to bring my ipad. I'm pretty sure I won't have a signal there, but I might still be able to play with it. I also sometimes pack medications and such if I plan to stay at a friend's house instead of going straight home.