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.

Oh, To Be OutGroup Again

When those of us who haven't won Pulitzer prizes consider those who have, we're likely to think of them as a whole -- a lump sum o' writers... members of an exclusive club. But when Pulitzer prize winners talk amongst themselves I'm sure they make all manner of distinctions. Even among the winners in one category they probably say: oh, but so-and-so won in a good year for fiction, and that other lady won in a bad year.

Folks who don't have stage IV cancer probably paint those of us who have it with the same brush, but I can attest that in group we split hairs.

B.C. ladies quibble over details. Some pronounce themselves "better off" than others. Others lay claim to having worse prognostic indicators, although with everyone sharing an ultimate prognosis of death it's hard to understand how or why this is done.

The Her2 + ladies are sad that they have a more aggressive cancer, and the Her2 - ladies are sad that they have less aggressive treatments. The women with ER+ cancer lord it over the ladies with ER- cancer. They wear their longevity like a badge of honor, but are just as as upset when their treatment fails after 5 years as the ER - ladies are when they fail at 5 weeks.

Some ladies bemoan their fate as "Triple Negatives". They are ER, PR and HER2 negative, and they are jealous of everyone who has at least one "positive" factor.

I avoid most of it. I try to be kind when the ladies say that they wish they'd come up with that cure SOON, because they're holding on until it comes, by gosh! When they describe themselves as "survivors" I think, "we're all survivors until we DIE, you fool", but I don't say it.

I drink hot chocolate. I apologize to Eric for being grouchy. I hold his hand and we smile and it's so sweet sometimes that I think that I can be happy no matter what.

I need the cancer ladies. I love them, and I need them. I have an uneasy relationship with this club, though. I think they're crazy. But I know that this disease is crazy-making, too.

There were bridges and wildflowers, too.

This part of the world has a gazillion beautiful places, and Eric and I used to go on hikes.

And you thought all we ever did was go to concerts and have parties!

Our hikes weren't super long or strenuous, but in periods of pretty weather and warm weekends I'd research new places to explore. I found many short hikes in striking settings. We'd navigate the ups & downs of the east bay hills, or circle a small lake, or walk through a field of cows (well, that only happened once but it was a memorable trip to an old ranch in Suison).

If my walking days aren't over, they're at least on indefinite hold. For reasons I can't explain, I still research new outings. It's a real bummer of a hobby, too.

So... I recently found a new walk that would have been perfect for my old life. Short -- just 3 miles -- but reportedly lush, green, and with 5 or so waterfalls to explore. I wanted it. Totally. In fact, the thought of NOT going there was crazy-making.

I passed the information on to NM and she went with her husband. She took pictures, which she shared with me today. It was just as I thought it would be: totally gorgeous.

I've learned that I'm not much for living vicariously.

Weekend

It was a lovely weekend in the wine country. I had no chemotherapy on Friday, which meant no mouth-full-of-grubby-coinage. Food tasted as it should, and I didn't have to sniff everything -- including food, bedding, the air, and my husband -- in an attempt to ferret out the bad, bad, smell.

It was warm and sunny. Eric and I were slow moving, but who cares? We drove up on Saturday and tasted at just six wineries. Five of the six were wineries that I don't recall visiting before: Marimar, Dutton Estates, Iron Horse, Joseph Swan, and La Crema, which is not typically open to the public for tastings.

It was a special barrel tasting weekend and many of the wineries offered us snacks and small plates. We were served yummy cheeses, chocolate, paella, ropa viejas, and pinot braised duck with polenta.

We had a nice dinner with Lisa in Santa Rosa that evening, and went back to our hotel in Sebastapol. On Sunday we mostly just drove, enjoyed the scenery, and went for a short walk in Sonoma.

Now I'm at work, and there are still piles of papers to get through... but they're different piles of papers... and I may be slow and limping, but I don't feel sick. I have chemo again on Friday, but I'm going to try not to think about that today.

2 Pics

A beautiful day in the wine country.



Eric in dappled sunlight, happy with his cold grilled vegetable salad.

1 Picture, 48 Words

This is where we were two weekends ago -- before it started snowing like mad. Nine and a half hours of baBUMP baBUMPing along with chains got us 90 miles down the road and not even half way home.

I've stopped asking Eric to go snow camping.

He wore his hair in curlers, but those I don't borrow.

It's not purty, but it feels good!

Eric says that I'm an unusual wife. When I want to be extra-special-comfy I borrow my husband's nightgown.

Eric and I once attended a Halloween party as a grouchy old couple in our nightclothes. I was the fella, and Eric was the lady. I don't own a single nightgown, but Eric does. I've only worn it a few times. It's for evenings that require super soft and comfy flannel, and tonight's one of 'em.

I've spent many hours tonight on the couch with my husband's nightgown and my mother-in-law's Blanket of Softness and Wonder.

Tomorrow is a rare no-chemo Friday, thank goodness.

The plan for the weekend is to spend Saturday night away. We'll drive up to the wine country on Saturday morning and visit a few wineries in the Russian River Valley. It's a barrel tasting weekend, with many wineries offering special tastings and the opportunity to meet with the winemakers.

We'll probably just go to a few wineries. I want to go to Iron Horse, and to find some champagne.

Hopefully we'll be able to meet with Lisa for a nice dinner.

Other than that I just want to enjoy the countryside and my husband's good, good, company. We'll spend the night in Sebastopol.

Eric's back is still tricky & iffy, and my mysterious-foot-ailment is still in evidence, so we'll be a pair o' slow moving vacationers. But it's good to get away... good to see new places and old favorite places... good to be together, always.

Hump

I'm at work, looking at the competing stacks of papers on my desk. I double booked myself this afternoon with medical appointments. I'm supposed to leave at lunch for an appointment with the surgeon, but I have an appointment to be fitted for a sleeve & glove (for the lymphedema) at the same time.

I really don't know what to do. It's a bad day to be leaving work at all. It was hard enough to get away for one appointment. I'm tired. I don't know how to make this all happen.

Both nurses are out today. I need to be here to answer burning questions about lice (no nits in school, please) and impetigo (your child can return after 24 hours of treatment as long as the infected area is covered).

Better get back to work.

Shmignity.

Eric told me that in the days leading to his father's funeral there was a family member who said over & over again: At least he died with dignity. At least he didn't have to wear a diaper.

I figured it for a pretty odd thing to say ONCE, never mind again & again, but people say strange things in the midst of grief. It made me sad -- made me think that the person who said it was the person who was worried about dignity. Folks are so afraid... afraid of what people think, afraid to live, and afraid to die.

Why should someone who's dying be concerned with dignity?

Initial cancer treatment was a sprint for me. I cowboyed my way through chemo & rads and emerged with enough sense and superstition to not call myself “cured”. I had some fun, loved up Eric, got myself a gig w/ summers off and tried not to look over my shoulder.

But my current cancer treatment is a marathon. When it’s not a slow drain, it’s a fast one. I'm just shy of two years into the 4-or-5 years of life that I was said to have “with luck”, and I spend one or two days out of each week thinking that living like this for a couple more years might not be lucky at all.

It's a weird thing to think and a weirder thing to drop into the least read blog in the sphere. I want to be alive. I love Eric, and I love my friends. Even today, on what was one of the most physically challenging days of my life (in the ickiness- mixed-with-acute-pain-arena), I laughed and had fun, some. Eric is handsome and good. I want to be here with him. I want life to be good.

But the gulf grows wider and my body feels worse. I haven't cared about dignity since I was an uptight 20 year old -- when I longed for it as something I couldn't seem to hold. Dignity is a consolation prize for people who are dealt bad hands. I'd rather own a chicken suit, and I do.

I want to feel good, and I can't.

Wee Hours

There are so many different areas of concern for me physically right now that it all seems a bit overwhelming. I hurt my foot -- somehow, unfortunately -- and now I'm limping along. Walking short distances is difficult.

The new meds didn't make the queasiness go away, and I still have that dirty-penny-metallic thing going on in my mouth.

With Eric fairly out of commission as well it looks like it's going to be a challenging week.

TGFAO (thank god friday's almost over)

My darling husband hurt his back morning, minutes before we were to leave the house for my chemotherapy appointment. I feel so bad for him! Eric's back has always been a bit "tricky", but this is the first time in several years that he's been incapacitated.

I helped him to a reclining chair and went off to my appointment. All of the nurses asked for him and sent good wishes home with me. My nurse-du-jour, the LesbianNotQuiteInCharge (as opposed to a highly lauded LesbianInCharge) talked about Eric's devotion to me. She said that he treats me like a queen, which is true, but is still a funny, old-fashioned expression.

It makes me wonder how other people treat their spouses in the Chemotherapy Suite. Most people are there alone.

Eric is still barely able to walk. Experience tells us that it will take a few days at a minimum for him to be able to resume normal activities.

We have house guests arriving tonight from Oregon, but there won't be much dancing and frolicking this weekend.

However crooked, ouchish, queasy, or headached our household may be, it's still good to be with Eric and good to see our friends.

Super Highway

There was an earthquake this evening. Eric and I were watching television, and then suddenly there was that rolling-jolt and the moment of anticipation: will it subside or grow?

I don't want anyone to be hurt, or property to be destroyed, but otherwise I enjoy earthquakes.

So... we felt the jerk and jolt, and then it was over. Within one minute I was online, and there was the quake... preliminary information only. Within three minutes we had the magnitude, coordinates, depth, and all of the other earthquake-relevant data.

I love the internet!

Just a work day.

I haven't been feeling so hot, but I'm better today -- just in time to have chemo tomorrow! So it goes...