Another busy week

(There's no reason for Mr. Bunky's picture to be here except that he is patiently waiting for me to go to sleep so he can sleep, too.)

I started outpatient physical therapy this week at Novacare. I only have 11 more sessions. I aim to be walking with just a cane. PT Dan seemed very straightforward as he evaluated my range of motion and my abilities. 

I had my regular appointment with my gyno on Thursday. I really like her. She spent an hour reviewing my medical stuff from last year with me. I felt so cared for! She was concerned about my support systems and my coping with everything. She's the best! In case you were wondering, I took off my leg for the exam. I was wondering about it beforehand and thought it would be easier without it. 

Friday was chemo again. My shoulder X-ray is totally clear, but my shoulder pain has escalated to where I take painkillers a few times a day. I am getting a ct-scan, a bone scan, and an EKG (my blood pressure is pretty high). I also have the ultrasound and the mammogram the surgeon ordered. I hope we can do a few of these during the same visit.

After chemo and my nap, I went for a walk in the neighborhood. Ken met up for me and we had dinner at a restaurant. We hardly ever go on dates and it was fantastic. I realized that my shoulder hurt less after the walking.

Today, I walked to Ken's house to watch the soccer game. Then we walked to Lucky to have drinks for Rich's birthday. That's about .6 miles total. I left early because my shoulder started aching and I couldn't take deep breaths without pain. 

This breathlessness makes

Me miss the easy air flow

For years I ignored 

Jimmy says that writing haikus helps with pain because it forces you to think in rhythm and in syllable which makes it harder to focus on the uncomfortable body sensations. 

update on appointments

I apologize for not updating more often. I didn't have internet access at home until today. I had been walking or "walking" to the coffeeshop for internet, but I haven't even been able to do that in the last few days. My leg has been worse since last week. My knee is swollen and stuck at a 90 degree angle. It is really hard to walk on. The orthopedic doctor called in a prescription for Vicodin and for Gabapentin to help with pain.

I have 5 appointments this week: 3 tomorrow. I meet with the orthopedic doctor tomorrow morning to discuss his plan for surgery. Afterwards, I meet with the hospital staff to determine any presurgery tests that they need. In the afternoon, I meet with my surgeon to review my scars from the cancer operation.

Thursday, I get my shot of Herceptin and Friday I have surgery on the cyst in my knee (finally!).

calvary coming in

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

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

More tests!

Today I have a CT scan ( of my chest, abdomen, and pelvis) and an MRI of my knee. The MRI will help the doctor surgically remove the stupid Baker's Cyst that has been wreaking havoc on my ability to walk. I just need my surgeon to call the orthopedic doctor to approve me for surgery. Yay!

Yesterday, My acupuncturist used cupping to get the inflammation down in my knee and leg. It was awesome. I didn't take Percocet until bedtime because that helped with the pain. I go back to her on Monday.

scheduling ct scan and mri

I have just spent half an hour trying to re-schedule the ct scan of my chest, abdomen, and pelvis and schedule the MRI of my left knee.

I called the hospital and, after being on hold for a while, was told that I needed to provide the pre-authorization number for the knee MRI. So, I called my doctor's office and was put on hold and spent forever in the tangle of phone options without ever talking to a person.

I gave up and called my insurance company. I spent forever in their tangle of phone options. I entered my birthdate and social security number into the system more than once. When I finally talked to a person, they asked for them again (which seemed weird, but whatever). They said that I had to call a different company to find out. I did, and got a person right away (YAY!) who was not only polite, but was also helpful.

Then I called the hospital back. The woman on the phone said that the CT scan request did not specify whether or not it needed contrast and that, as such, she would not schedule it until it was confirmed by the doctor.

So, I called my oncologist and left a message with Maggie, the wonderful person who typically schedules appointments for me. I hope she gets back to me instantly and that I can just get these tests done so that I can get the surgery so that I can walk.

bone scan

Today, I had a bone scan at Methodist Hospital. My friend Dan drove me the 4 blocks to the hospital. We got there around 9 am and got up the the Nuclear Medicine Department within an hour. The technician brought out a metal canister that held the hypodermic needle in it. She gave me the shot in my right arm, then said that I could return in 3 hours. Another technician helped me into a wheelchair and drove me downstairs and outside to Dan's car.

Dan and I got breakfast at Oregon Diner and chitchatted about non-cancer topics. yay!

We stopped by the Post Office. I got a lovely package from my friend Kaja. It had a fantastic book of letters and a banner in it. Then we headed back to the hospital for the scan itself. Dan grabbed me a wheelchair and brought me up to the floor as we got to the hospital so that I wouldn't have to walk at all.

For the scan, the technicians strapped me to a platform that slid into a ring-shaped structure. It wasn't as enclosed as an MRI. It sat just a few inches in front of my face for a few minutes and then moved slowly down my body. I mostly rested with my eyes closed and imagined relaxing on beaches. The process took about 20 minutes. Then they re-oriented the machine twice and specifically scanned my hips, as bone loss typically shows up there first.

Afterwards, the technician drove my wheelchair out to the bus stop and I headed to work.

Surgery is in 3 more days. I am a little nervous, mostly about the immobility of my leg and the probable immobility of my arm, too. I'm also a little nervous about the biopsies, but there isn't anything to do about that now.




Needle count: 44
Touch count: 18

Lumpy 2 update

I haven't really had Internet access recently. My upstairs neighbor moved out, taking wireless with her. I ordered it, but it looks like my phone lines don't work. I don't know how to solve this. Also, I am on a ton of painkillers. That's probably why I can't figure it out.

Wednesday, I went to the hospital for my knee because it had been so bad Monday and Tuesday that's couldnt sleep. As i stepped into the building, people who were waiting asked the guard for a wheelchair for me. The doctor wouldn't see me because my referral had not been completed. I waited in the lobby, half slumped and half awake. My friend joined me and we headed up (different floor) for an MRI of my breasts. There was no visible cancer. Yay! I still got a shot (for contrast dye) and had a hard time holding still for the pain in my back, hips, bones, and my left leg.

Thursday, I went back to the hospital with a friend to see dr junkin, the orthopedic dr who had aspirated my knee in hospital. He gave me a shot of lidocaine and tried to aspiratemy knee, but nothing came. He sent me for an ultrasound guided aspiration on Friday.

Friday, Ken dropped me off at the hospital and I requested a wheelchair immediately. Iwas transported to the procedures area. I was in a ton of pain. The seat of the wheelchair seemed to press to hardon my body. I couldn't get comfortable. The nurse said that I could take Percocet. I did and started to relax. The doctor aspirated 90 something cc's of fluid, about 3 ounces. Afterward, I took a nap, thanks to the pressure relief and the painkillers.

Today, I can still barely walk. I am about where I was Monday, in terms
of pain and mobility. I am very frustrated and a little nervous about how swollen my foot is. I feel bored and isolated from everyone. I would love some cheer up phone calls or messages.

Needle count: 41
(it was 34, 1 for MRI, 2 for Thursday, and 4 for Friday.)

Antibiotics and a mystery infection

I am exhausted. I went to the chemo doctor today because the nurses insisted because of my fevers. The doctor prescribed me antibiotics "just in case" and wants me to continue to monitor my temps. The nurse took a ton of blood to check of infections. I lost another 5lbs in the last 2 weeks. I am trying to eat, but I am not hungry. I am tryin to rest, but I can't get comfortable.

needle count: 30
touch count: 16

knee MRI

Yesterday, I had an MRI of my left knee. My leg hurt to be straight for that long. I tried deep breathing and imagery, but mostly I did my best to hold still so that I didn't have to do it over and over again. I still don't really believe in MRI's.

If you haven't had one, you might not know that they are extremely loud with banging, clanging, knocking, and humming noises. It's almost like a sound effects crew is in the other room. I'm suspicious of technology that could make something that loud without also being able to use noise cancelling technology at the same time. That seems pretty silly. Most people getting an MRI are already in pain or sick with something. At the least, they are nervous that they are about to be diagnosed with something. It seems weird to add arhythmic banging to our experiences.

in the frying pan and on fire

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

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

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

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

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

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

Nothing like leaving the doc in pain.

needle count: 21
touch count:  13

chemo follow up

I saw Dr. R., my chemo doctor, for a follow up this morning.

The chemo nurse took 3 vials of blood to check my counts. She explained that the pain in my back, hips, and legs was from the shot that they gave me to increase my white blood cells. Since bone tissue creates blood cells, the biggest bones in my body were working really hard. No wonder I've been in so much pain. It worked, though. I have more white blood cells in my body than you (or most people) do. Yay!

Dr. R. said "no restrictions" and seemed to think that things were going very well. She felt Lumpy and said that it was softer and that the skin over it was easier to move. Apparently, that's a good sign.

needle count: 15
touch count: 11

MRI

I had an MRI (with and without color contrast) on my breasts. I had to lie face down with my arms above my head and my breasts pulled between foam boxes for about 45 minutes. It was terribly uncomfortable. The whole process should have taken about an hour total, from check in to check out, except that the staff at Methodist Hospital kept holding up the process.

At first, they would not me check in without having the actual doctor prescription. I called my doctor and he faxed it over immediately.

Then the medical assistant preparing me for the MRI said that they would not do it without having the reports from the previous tests (Ultrasound, Biopsy, etc.). She insisted that I had mammograms, which I didn't. I tried to ask if they could run the test and have my doctors intrepret the films, but she said they couldn't. She also yelled at me that I was doing everything wrong. She added that she had breast cancer last year and couldn't understand why I was making such a big deal about it. I really wanted to hit her.

Finally she left, and the MRI techs brought me back. They asked me to lay down on a platform. The assistant helped me arrange my breasts in foam pockets with my head in place so that I can't move. I had to hold still and they talk to me through the MRI. It's loud rapping and clicking. I found my mind trying to anticipate or create a pattern in the sound, but I can't. The sound made me think of Harrison Burgeron, from the Vonnegut story that no one else seems to have read.

Anyway we were at the hospital for about 4 hours for this whole process. It exhausted me.

Also, Dr. L. told me that my health insurance would not cover the PET Scan and that he'd been on the phone with them to persuade them otherwise. I am angry and frustrated. I feel like my insurance company is preventing my care.

After the MRI, I head to work. I'm awful and can't focus. I keep reading sad websites about wigs and cancer. I am super cranky pants today.
Needle Count: 4
Touch Count: 13

first tests

I give 3 vials of blood before I go to work on Monday.

Needle Count: 3

meeting the surgeon

This is going to be hard. I am at the surgeon's office with Ken. Everyone here is so focused on me and that scares me. I don't like being the center of attention, not by everyone at once.

My weight has gone up, but my clothes fit looser. How's that?

Ken's doing a good job of talking to me and distracting me from my anxiety. It's a little embarrassing answering questions over and over in front of this man who I've known for years, but am now dating. I ask him to turn around when I put on the hospital gown.

I like this doc. Dr. L. is personable and 7 foot tall. He doesn't wear a tie. He tells me about his daughter who is around my age and teaches reading to underprivileged children. He asks me about my needle point mandala.

Dr. L. examines me and introduces me to two of his interns, who also examine me. He asks if we could do the biopsy now. I agree. I don't want to have to come back. There is a part of me that feels like I betrayed all the people who wanted to be there for the biopsy, but, that's too bad now.

Ken waits in the waiting room. I walk to the operating room and the ultrasound tech puts Lumpy up on her screen. I see this ugly black hole and my breast feels so tender. I meet the pathologist and his resident; we're talking about humidity and curly hair. After a few minutes, they both examine Lumpy.

When Dr. L. starts, he tells me everything that's happening as it happens. He has a calm voice and it seems like he's narrating a somewhat boring book as he pricks me with lidocaine to numb my skin before the biopsy.
I can see the gigantic core biopsy needle in my peripheral vision. He holds it with two hands and double-checks with the nurse on how it works.

I can feel his fingers on my breast and the pressure is uncomfortable. I'm pretty sure that much pressure would hurt without Lumpy, too. I try to just breathe and not move, but it is difficult not to jump as the needle pushes into me. Somehow, everyone is talking about getting teeth pulled, which is also weird and awful conversation. I know they are trying to distract me, but maybe that's too raw. The needle makes uncomfortable crunching, clicking sounds. I wonder how much stress could be eliminated if we could block scary sounds from medical procedures. I hate this sound and the sound of dental drills.


Touch Count: 10
Needle Count: 2
The procedure doesn't exactly hurt, but it feels a little bit like a dentist suctioning my mouth, but more so. Maybe I think that because of the conversation. Finally, they finish. The nurse cleans the blood off my breast and bandages it.

Ken gives me a high five and I'm so grateful that he didn't hug me.