Sixty to zero

I started this morning with an easy school drop off followed by breakfast with friends. Headed home, and spent an hour or so doing guided meditation and the new stretching exercises that the physical therapist assigned me, while listening to some healing music that was assigned by the woman who leads me, long distance, in meditation. At noon, I was showered, refreshed, relaxed and ready for a quick trip to the pharmacy and then a support group.

Sounds like I’m taking great care of myself, right?

By 1:00, I was a total mess.

I order almost all of my meds through the Kaiser website, and have them shipped to my home. Very efficient and easy. However, both the Votrient. and now the Inlyta. had to be picked up at the pharmacy. After waiting in line for almost half an hour. with my body becoming more and more sore and weak, I was told that my prescriptions weren’t ready (Though the website said they’d be ready yesterday), that two probably weren’t even there yet, but if they were, the woman who dealt with incoming orders was on break, and wouldn’t be back for an hour.

I wasnt able to handle it well. I’d just used up my very last “spoon” of energy standing in line, and with it went all ability to cope. Lots of tears were shed. An f-bomb was dropped.  Only one.

Eventually, I was able to get two of the three scripts I’d come for, and got the promise that they’d call me when the 3rd one was ready.  A volunteer wheelchaired me out to my car, where I rested for a while before heading home to sleep for a while.

It was a humiliating experience. I couldn’t stop crying. I could barely move. I was in pain, uncomfortable, exhausted. And I couldn’t do anything about it. Ultimately, I felt my confidence in my abilities even more shaken.

I usually try to end all my posts on an upbeat note, but I’m having difficulty getting to that space. I really just want to curl up, away from the world, for a while.

However, one possibly hopeful note is this – one of the meds is for hypothyroidism, which my doc said I’m experiencing. Once the med starts working, I might have a bit more energy than I’ve had, and that would be greatly appreciated.

Not able.

I feel a bit frustrated tonight. Miss M and I have an invitation to see a movie with friends tomorrow, and while trying to work that out, I haven’t been able to keep hold of the idea that she also has a birthday party to go to tomorrow. It keeps slipping away from me. My mind is like a sieve. I’ll remember something midway through doing something else, drop what I’m doing so I don’t forget the new thing, and completely forget to go back to the old thing.

I’m also agitated because I’d also been hoping to go to a quilt guild meeting tomorrow. I’ve been wanting to join a group, and the Saturday afternoon timing seemed like it would work well with my schedule. But then it turns out it’s in Redwood City, not Foster City, and that extra 10 miles or so each way pushes it from “it’ll be a stretch” to “I don’t want to risk it.” Plus, I’d planned to pick up our dinner stuff afterwards, but found that the actual meeting would end 2 hours before the pick up time. And so Saturday isn’t shaping up how I expected it would.

The other quilt group I was looking into is held on a week night in Oakland, so distance wise, it’s do-able, probably. But it’s in the evening, two and a half hours after my support group ends in Pleasanton. Lately I’m so wiped out after group, that I don’t think there would be time to get enough rest between travels.

I want to stand in the middle of the room, stomping my feet, crying “IT’S NOT FAIR!!!” I want to be able to do the things I used to be able to do – like drive 45 minutes to get to a meeting without worrying that I’ll over exert myself. I’m frustrated being stuck in a smaller sphere of living. I’m annoyed that even the little things wipe me out.

I’m doing my best to acclimate. I’ve been using Amazon for most of my non-grocery shopping needs. Waiting two days for a package is preferable to wasting my energy going to Rite Aid or the hardware store. I plan my days so that I have rest time between activities. I have to spend time planning so that I don’t waste my energy. I’m pretty sure that, if I contact people in the guild across the bay, I can find someone to carpool with to future meetings.

But I want to go tomorrow. And I just can’t find a way to make that happen. And it sucks.

I probably should go to bed.

Orange is the New Black Hairstyle Roulette

Once again, my hair looks crazy.  I did call it when I said I could use my cancer drug to create striped hair.  I’ve got stripes of blonde, stripes of grey, stripes of dark brown, stripes of lighter brown.  I feel the need to look like I’ve actually planned my hair color.

And so I bring you the Orange is the New Black Hairstyle Roulette.  Pick a color, pick a style.  They don’t have to match.

Here we go.

The Morello

The Morello

Morello, our favorite feisty, bus driving stalker, has hair that is close to my natural color.  I know the brown will look good, but it’ll be a bear to keep up – and anyone who knows me knows that upkeep is not my forte.  My hair is currently about the same length as pictured above, so that length wouldn’t take any effort on my part at all.  WIN!  But, really, it’s a little tame.


The Red

The Red

I don’t think I’ll ever be quite as bad ass as Red, but I have dreams that I’ll be able to cook again (though hopefully better than her prison fare.)  I’ve never rocked hair quite as Heat Miser red as Red does, but that could be a fun change.  Again, upkeep.  My hair probably won’t spike as well as hers, but it often has a mind of its own, so a medium short cut would be easy.



The Nicky

I admire Nicky’s sarcastic humor.  I aspire to it, actually.  I have done Nicky’s more orange-red hair color, and I think it works pretty convincingly on me.  I’m not entirely thrilled about long hair, but I know that my husband would love me if I let it grow as long as Nicky’s.  But, again, upkeep on the color, and trying to tame it with the length – ugh!


The Yoga Jones

The Yoga Jones

Now, supposedly, peacemaker Yoga Jones and I hail from the same area.  But while she was growing pot, I was just doing the growing up, going to college thing.  Jones’ hair is the closest to the color that is growing now, thanks to the Votrient.  (Premature grey, premature menopause, and on top of that, cancer?  Yay!)  So, this hair color would be the least amount of work on my part.  I enjoy the ease of a short hairstyle, or if I feel like shanking someone, I can let the hair grow out and channel Taslitz, one of the senior inmates.


The Miss Rosa

The Miss Rosa

Miss Rosa has been living with cancer in prison.  Cancer sucks.  Dying of cancer sucks.  Dying of cancer in prison?  Well, maybe that won’t be happening.  I’ve always thought it would be interesting to shave my head.  But, no, I’m not going there.  I just think Miss Rosa is the bomb.


The Showrunner

The Showrunner

Jenji Kohen is Orange is the New Black’s showrunner.  Apparently, what you see is her way of dealing with grey.  Given the similarity of our hair length, curls, and face shape, I think I could probably pull the style and the color off.

So, what say you?  Give me the color and style combination you think I should go with.

I pity the fool

We dropped the kids off at Camp Kesem this morning. Camp Kesem is a network of summer camps that are designed for children with parent(s) who have/had cancer. And it is free. Nice, huh?  At check in, they had a breakfast spread – muffins, bagels, etc., and while the counselors led the kids in songs and activities, the parents got to mill around talking to each other.

We saw a couple of families from our family support group, and started chatting.  At one point, another woman walked over, and our friends introduced her to us.  She asked about my diagnosis, and when I told her “Kidney cancer,” she got a look on her face that confused me at first.  And then I realized what it was – pity.

Why did this surprise me so much?  That she, too, was in the cancer community?  (And, from what it sounds like, lost her husband to cancer.)  It was obvious that she immediately understood exactly what my diagnosis means, which many people both in and out of the cancer community don’t.  So I appreciated not having to explain.  But, pity?

Although I know my lot is not something to be desired, I have a difficult time viewing myself as someone who needs or wants pity from others.  Love, support, back scratches, and hiking buddies?  Yes.  Pity?  No.

I think what I was hoping for, after seeing the initial spark of recognition, was something more like “Yeah, I understand.  I’ve got it.  And you’re going to do just fine, no matter what the outcome.”

Because I think that’s kind of where I am now.

But maybe I’m the fool?


In the beginning

So here’s how it all went down.

That Wednesday in late March, just two days after I’d freed myself from a job that felt more punishment than pleasure, I was looking forward to everything that was coming up. I didn’t have to sit at the desk I’d been chained to; the one which caused my back pains. The weather was gorgeous – sunny, but not hot. Perfect for the yard work I’d been planning in my head. I had a plan laid out for studying java programming, so that I could really *get* the object oriented bits. I’d put job hunting out of my head for the time being. I had a quilt or two to make.

And then I noticed that there was blood when I wiped after using the toilet that morning. “Damn, my period isn’t supposed to start until next week,” I thought, annoyed. Later, after a trip to the gym, I peed in the shower (yes, I’m one of those people), and noticed that there were chunks of blood. A nagging thought came to me that that wasn’t period blood.

By the late afternoon, I was experiencing a fair amount of pain, but thinking it was probably just a urinary tract infection, I’d reached out to my doctor who prescribed antibiotics over the phone. The trip to pick them up was difficult, but I comforted myself with the reminder that once the antibiotics kicked in, it would all feel better quickly.

Except it didn’t start to feel better, and instead grew increasingly worse. That night I had the strongest need to urinate, but couldn’t get anything to pass. Finally, as I stood, screaming, in my bathroom near the toilet, the dam broke and what erupted was nothing less than a scene from a horror movie. My bathroom floor was covered with blood and clots as large as an egg. The walls were splattered with blood. I sat down on the toilet and cried with relief, with pain, with terror.

Reil immediately made the decision that, yes, indeed, this warranted the trip to the emergency room we’d been contemplating. By the time we got there, I was once again in pain from the need to urinate. Luckily, the folks there got me situated in a room and started a catheter, which produced a fair amount of relief. A few hours later I was sent home with an appointment with ultrasound the next morning and the promise of a urology appointment later.

We got a few hours of sleep. I emptied my catheter bag. We dropped the kids at school and headed back to the hospital.

The ultrasound technician was friendly, and I was so wiped out that I didn’t notice when she began acting a little squirrely. Reil, on the other hand, did, and began making calls to the urology department to try to get a time for me to come in. Eventually we headed back to the ER to get them to send the order to urology, and minutes later, the ultrasound tech met us there, and spoke to the doctor.

A CT scan was ordered. I was pretty much out of it anyhow, so Reil ran home to pick the kids up from school. My catheter bag filled up and I couldn’t get anyone to empty it immediately- great pain until the nurse helped out.

Finally, the CT scan. And then a wheelchair trip across the road to the urology department, all the while my bladder feeling more and more full. Once there, it became apparent to me that the catheter had been knocked out of place, and that nothing was coming out of my bladder. Despite my pleas for help, they ushered me into an exam room, telling me that the doctor would come soon.

I stood there, waiting. Needing to pee. Have you ever tried holding your urine until it hurts? I was there, but I couldn’t let go. Everything was blocked. A young woman came in after about 20 minutes and I told her I needed help. Before she left, she told me the doctor would be there in a few minutes. Another 5 minutes. I called for help. I screamed. I finally opened the door and slammed it, which brought a couple of nurses running. I begged for their help, and they got me down on the table, removed the catheter, and oh! the relief.

I laid on the table and cried and cried and cried.

And so, it was almost anti-climactic when Reil and the urologist showed up, and the urologist turned to us and said “You have kidney cancer, and it has spread to your lungs.”

And in that moment, yesterday’s thoughts of enjoying freedom, planning my future, loving life, all slipped away.

Grass Valley Trail and my mom

There are times when I feel as if I could hike forever. A good trail with rolling hills, sun light burning down on me in the meadows and gently filtering in through the leaves in the forests. Earbuds playing my favorite tunes. I can walk and dance and sing all day. Especially when I want to avoid everything else.

Like today.

Yesterday my mom was diagnosed with kidney cancer. It’s the same as I have – renal cell carcinoma. They haven’t staged it yet, but since it hasn’t spread, it is less severe, more easily treated than mine. Perhaps curable, unlike mine.

I feel so helpless. I can’t help her. I can’t help me. I barely have the ability to cope with my diagnosis. How can I support my mom in hers? Who will I cling to like I’ve clung to her? Will we cling to each other, hoping for the best?

I sit on the stone bridge where I’ve stopped for a rest and to write. To help clear the thoughts banging around in my brain. A cool breeze blows through, making the eucalyptus trees creak and the redwoods sway.

I tell myself I can’t go down the road of what ifs, even though I already have. What if it isn’t as simple as her doctors make it seem? What if? I can’t even go further down that path.

So I put the earbuds back in, pick myself up off that stone bridge, and start walking. Down a real path that is lined with trees and wildflowers. That will give me a little more time to escape from reality. Where I can sing and dance and hope nobody sees me trying to push these thoughts away.

Why I shouldn’t make big decisions while on cancer

This could be one of those celebrity mug shots if a) I were a celebrity, b) this were shot in a police station instead of my bathroom, and c) someone had arrested me for something besides crimes against my hair color.

Mug Shot

I really shouldn’t be allowed to make choices like this while I’m dealing with cancer.  Maybe there’s a blonde that would go well on me.  Maybe there’s a colorist who could do better highlights than these.  I don’t know.  (But the green is all on me – that was my post diagnosis celebration.)

All I can say is that my friend and ex-hairdresser, Andrea, talked me down from the edge and into a drug store for a quick fix with a semi permanent hair color.  I even got a few compliments today.

You can all stop laughing now.  REALLY!