Port Storm

I kept telling my story at Kaiser today. Eric and I went there in the morning for chemotherapy, and shortly after our arrival I started telling my story:

My port site doesn't heal. In addition to coming to Kaiser three times a month to have chemotherapy, I've been making one or two visits to Kaiser every week for over two months for my port site. Every time I come, someone looks at it and says, "It's not healing -- come back in a week". It doesn't even stay the same. It gets worse. Now I've had my port taken out, and the incision is healing beautifully -- but the opening... the "hole", as my oncologist calls it...? It just gets bigger. Now it's 50% larger than it was before the port removal. If it's not going to get better, and if it's going to get worse, is there a next step?

I told my story to 5 nurses, 1 nurse practitioner, and 2 doctors.

I waited for over an hour for the last doctor. I sat on a gurney, just a curtain away from a woman with painful abdominal abscesses and advanced lung cancer. She kept telling the nurse that she was afraid.

I waited over an hour, and when the doctor arrived he 1. looked at it, and 2. told me to come back in a week. He sat next to me on the gurney and spoke in a condescending tone: He knows that I probably just want him to stitch it up and have it magically heal, and he wishes he could. He knows I must be frustrated. He kept patting my leg, and twice he pushed his shoulder into mine... bumped up against me as if to cajole me.

It made me want to cry. I'd just had chemo, and I was exhausted, and I'd waited an hour, and all I wanted to do was go home. He was telling me that it wasn't healing, and that I should come back in a week. I was afraid to speak... afraid I'd produce some kind of shrill, shaky, unintelligible sound.

It kinda sucked.

One of the nurses was helpful, though. She recommended that I take zinc. Oh, AND...

She also told me that it's nice to talk to a patient who has come to some acceptance about dying. I'd mentioned nothing of dying, but she probably sensed some sort of grim finality it my third or fourth retelling of the Port Story.

So, there ya go.

Please... no advice.

Let's see...

It's Wednesday morning and I'm at work. It's a clear morning that promises to be a bright and sunny day. My foot hurts and I haven't had (enough) coffee yet.

The site of my port removal is and isn't doing what I'd like it to do. Healing will still be a slow process, and I ran out of patience a bit & a while ago.

The latest efforts to control my nausea were not effective, but there was a happy side effect of increased energy from the Decadron, so that's cool.

More waiting-and-seeing, with as many nice moments with Eric as possible -- that's the plan!

I should be in bed. Seriously.

It's been a quiet Sunday for me. Eric went to school, picked up papers, graded papers, went to the grocery store, made dinner (arroz con pollo), did dishes... it wasn't such a quiet Sunday for Eric.

But I lied on the couch, read, watched tv, ate, yakked on the phone, and surfed the internet.

I tried several combinations of drugs in an effort to stave off nausea. No success. Also, the incision from my port removal is not behaving as I would hope. Tomorrow I'll have to see what they say in interventional radiology. Also, I have an appointment with my oncologist tomorrow... time to discuss The Plan.

Also, I have a 12:30 PM board meeting on Tuesday that I need to prepare for tomorrow.

I don't mind any of this too much. It feels like there's movement. I'm not in the same old limbo, although I suppose it's entirely possible that things'll go from bad to worse. Let's hope not, though! I'm hoping for worse to better. We shall see!

Pacheco

I was feeling just as queasy and tired as any recent post-chemo Saturday, but my foot didn't hurt as much, and so we decided to go in search of sun and wildflowers.

We drove to Pachecho State Park, located roughly between here and mid-nowhere. It wasn't our prefered redwood or ocean view sort of locale, but the rolling hills were green and lovely, and there were more wildflowers than we could shake a stick at.


The grass doesn't stay green here for long. We picked the perfect time to visit.


In areas the ground was covered with rainbows of colors -- here are pink and purple, but some areas were red, yellow, blue, and orange.


I love oak trees. There's something about them that seem more "alive" to me than other trees ... more conscious. But that's just hooey... I know, I know.


It was a sunny day but it was windy and cool.


We didn't walk far (not nearly as long as we drove) but we did see snakes, squirells, an eagle, and a bunny. There are also mountain lions, elk, deer, coyotes, and wild pigs in the park. Wow!


My darling and handsome Eric among the tall grass and wildflowers. Eric found the tall, green & golden grass, rippling in the wind, to be eerily beautiful.


California poppies, of course.


At the end of the walk I had over done it, and I was once again a pale, eyelashless, queasy, cancer patient. For a little while, though, I was smiling in the sun with Eric. Which makes today a good day..

Home at last!

The medical stuff I was s'posed to do yesterday didn't work out, so today has been a long and busy day.

I went to have blood work done this morning, and then had chemotherapy. After chemotherapy we came home for two hours, and then went back to interventional radiology for the port removal. I had conscious sedation, and I highly recommend it.

We just returned from the hospital -- it's so weird to be pushed out of the hospital in a wheel chair -- and the local anesthetic is starting to wear off. Ouch.

Now it's 6:00 PM and I haven't been allowed to eat or drink anything since 7:00 AM. Sadly, I was asleep at 7:00 AM. Eric's making me dinner now.

It's been a challenging few days. I've felt so sick for so long that I'm starting to feel picked on, and my emotions have been more erratic than any period I can remember. I want that to change. Maybe having the port removed is a first move toward that end. It's progress, of a sort, and a step toward resolving at least one of my "issues".

I want to enjoy this sunny, warm, weekend, the first weekend of spring.

Oh, well.

I can't walk very effectively or far, but otherwise I'm okay today. Had an appt w/ the surgeon today. Tomorrow (sometime... don't know when) they'll take out my port, which has never healed. So... outpatient surgery tomorrow, and bloodwork... chemo on Friday w/o port, meeting with oncologist on monday (to go along w/ my monday nausea)...

All in all it seems like staying in bed might be better.

Annie

I felt better today -- I'll take better over the same or worse ANY day.

This is still no great shakes. Will hope for better better tomorrow!

Ick.

I left work after lunch today. I drove home on a freeway that seemed much more wiggly that it ever had before -- my apologies if you happened to be on W 580 at 1:30 PM today -- made it up the stairs and fell into this good, good, chair.

My blood feels like 40 weight and the back of my head is caught in the jaws of a demonic nutcracker. It doesn't stop. There are weights tied to my ankles and elbows, and ants crawling on my feet and hands. And over it all, a thin glaze of nausea, sticky & omnipresent.

This isn't the cancer. This is the treatment. It's nuts. I'm just dying, just like everyone else. Sooner than expected, later than some... it's not the end of all things. All of this fuss. For what?

I'll try a new anti-nausea drug next time. Try to negotiate myself a chemo break. Keep resting my head next to Eric at night... still my favorite thing in the whole, big, world.

The whole, big, world, but it feels smaller every day. I need to switch it up. Soon!

Sunday evening

I was up until 4:30 this morning. I slept five or so hours. It's been a quiet day. I hope to feel better tomorrow. (Starting to sound familiar?)

Late or Early?

It's a blechy post-chemo weekend.

It was a pretty, sunny, day. I sat in the backyard for a while, soaking up sun. Eric is still handsome. I haven't wanted to let him out of my sight.

I'm hoping I feeling better tomorrow. I guess that's really today.