The Assertive Cancer Patient

Harassing Phone Calls From Verizon Wireless

What was I doing on January 12?

I had to check my calendar to be sure, but it turns out that January 12 was the fourth of five sessions of cyberknife surgery to treat a tumor in my skull. 

Here's one post that I wrote that day: Decadron Prescription Errors

I spent the evening on the couch, tired, and in a lot of pain. 

Here are the phone calls that came in that day from Verizon, my cell phone company:

Jan. 12, 6:57 a.m.: 252-157-4972

Jan. 12, 9:13 p.m.: 252-157-4972-6

Jan. 12, 9:14 p.m.: 252-157-4972-6

Jan. 12, 9:18 p.m.: 252-157-4972-6

Jan. 12, 10:53 p.m.: 252-157-4972-6

Jan. 12, 10:53 p.m.: 252-157-4972-6

Jan. 12, 10:54 p.m.: 252-157-4972-6

Jan. 12, 10:55 p.m.: 252-157-4972-6

Jan. 12, 10:56 p.m.: 252-157-4972-6

Jan. 12, 10:57 p.m.: 252-157-4972-6

Jan. 12, 10:59 p.m.: 252-157-4972-6

Jan. 12, 10:59 p.m.: 252-157-4972-6

I don't think I was more than one month late in paying my cell phone bill. In any case, this bill collector was calling me back so quickly that several calls were logged by my phone as having come in at the exact same time. 

What was I doing on January 13?

January 13 was the fifth and final cyberknife treatment to my skull. In a post titled "Back Home on the Couch," I wrote, "... I'm tired, I'm in pain, and I had a long and complicated day of medical appointments."

See: Back Home on the Couch

I wrote another post that day called: Things Are Never as Simple as They Seem

Here are the phone calls that came in that day from Verizon, my cell phone company:

Jan. 13, 12:19 a.m.: 252-157-4972-6

Jan. 13, 12:20 a.m.: 252-157-4972-6

Jan. 13, 12:21 a.m.: 252-157-4972-6

Jan. 13, 6:19 a.m.: 252-157-4972-6

Jan. 13, 6:19 a.m.: 252-157-4972-6

Jan. 13, 12:12 p.m.: 252-157-4972-6

Jan. 13, 12:13 p.m.: 252-157-4972-6

Jan. 13, 12:13 p.m.: 252-157-4972-6

Jan. 13, 7:37 p.m.: 252-157-4972-6

Jan. 13, 7:38 p.m.: 252-157-4972-6

Jan. 13, 7:39 p.m.: 252-157-49726

Jan. 13, 7:39 p.m.: 252-157-49726

Jan. 13, 7:40 p.m.: 252-157-49726

Jan. 13, 8:16 p.m.: 252-157-49726

Jan. 13, 8:16 p.m.: 252-157-49726

Jan. 13, 8:16 p.m.: 252-157-49726

Jan. 13, 8:16 p.m.: 252-157-49726

Jan. 13, 8:32 p.m.: 252-157-4972 

Jan. 13, 8:33 p.m.: 252-157-4972 

Jan. 13, 8:33 p.m.: 252-157-4972 

Jan. 13, 8:33 p.m.: 252-157-4972 

Jan. 13, 8:34 p.m.: 252-157-4972-6 

Jan. 13, 8:34 p.m.: 252-157-4972-6 

Jan. 13, 8:34 p.m.: 252-157-4972-6 Three calls came in within a minute. 

Jan. 13, 8:35 p.m.: 252-157-4972-6 

Jan. 13, 8:35 p.m.: 252-157-4972-6 A second call within a minute.

Verizon seems to have left me alone on January 14, when I wrote this post:

How Many Friends Do You Need?

What was I doing on January 15?

It was a dark and rainy day, and I distracted myself from the weather--and the pain from my cancer--by making a bracelet for the daughter of a new friend.

See: Another Rainy Friday

Here are the phone calls that came in that day from Verizon, my cell phone company:

Jan. 15, 5:33 a.m.: 252-156-0126 

Jan. 15, 5:34 a.m.: 252-156-0126

Jan. 15, 5:38 a.m.: 252-156-0126-0 

@ Jeanne Sather 2010. 

 

Support This Blog, Please

You may have noticed a "donate" button at the bottom of some posts on my blog. A button that looks like this:

The button is there because I have decided to keep The Assertive Cancer Patient ad-free.

There are any number of ways to put ads on a blog. It's simple and easy. I tried this for a week or two when I first put my blog up. I used the ad service provided by Typepad, which hosts my blog.

But--and this is a huge BUT--most of the ads that popped up on my blog were for Web sites, products, and services that I personally couldn't endorse. And I didn't want them on my blog. An awful lot of them fell into the quacks category.

Cancer patients are fairly easy targets for exploitation--because we're sick, because we're afraid, because we'd like a magic cure that came with no side effects ... I don't want the exploitation of any cancer patient to start with an ad on my blog.

So there are none. But I still need to make some money from the blog, which takes the best hours and the best energy of my day.

The result? The donate button.

Thank you for any cash that you might be able to spare. I appreciate it more than you will ever know.

A special thanks to the cancer patients who have sent me donations, and then apologized for not being able to send more!

I know who my audience is, so I expected that if people were able to send a donation at all, it would be in the $10 to $20 range. Those $20 contributions are keeping me at the keyboard, blogging away.

If you want to read more about me, go to the About page.

A note about using PayPal: You can make a donation by clicking on the donate button and going through PayPal without setting up a PayPal account if you don't want one. There is an option to simply donate with a credit card.

@ Jeanne Sather 2010.

Playing With Beads

 I spent HOURS today sorting out beads, gemstones, and charms and putting them away in little bead boxes with dividers. 

Now, I am not a tidy soul at the best of times, and my favorite environment for creating is a sort of controlled chaos. Or even uncontrolled chaos.

Because how can you see what you have if it's all put away somewhere? 

Things had gotten out of control, however, and it was time to clean up, or at least to start. So that's what I did today. To give you an idea, we had not seen the surface of the dining room table (a beautiful oak affair from England) since Christmas, which was the last time I cleared it off.

The other reason to sort things out is that I really don't know what I have, so I've been running off to the bead store to buy jump rings when I HAVE jump rings--just couldn't lay my hand on them. 

I didn't finish the job, because I discovered I am going to need several more bead boxes, so I'll get those tomorrow. 

Also, Monica was over for a couple of hours this morning to shoot photos and sort through my latest acquisitions. That's always fun. 

We also packed up quite a few pieces for Monica to take home and shoot, because she has her lights set up at home, and it's too much hassle to drag them over here. Easier to carry the jewelry.  

Here are a couple of new pieces on Charmed Bracelets:

Noah's Ark WIth Giraffes

The Queen of Hearts

Classic Love Token Necklace

Photo: @ Monica Strasen 2010. 

Design and text: @ Jeanne Sather 2010. 

Starting Seeds

Seattle's weather for the past few weeks has been teetering on the brink of spring. Yes, I know it's only February and we could still have snow or freezing temperatures, but it sure doesn't seem likely. 

And, in any case, I've waited long enough for spring. Today, I began starting my seeds. After all, my crocuses are blooming in the front garden, and tulips and daffodils are up. 

I have seeds left from previous years, and I've also started buying more. One of my favorite stress relievers on a difficult day is to go to one of the great nurseries in my part of Seattle and just browse, or maybe buy a few packets of seeds. Ravenna Gardens is one of my favorites. 

I was in there recently and bought a package of heirloom morning glory seeds. Now, I know what you're thinking, many of us gardeners spend waaay too much time trying to get rid of morning glory, but I think these will be OK.

In any case, I plan to plant them in pots outside, so they won't be able to escape and take over the yard. 

The seeds I bought are my favorite brand: Renee's Garden, and the morning glory is "Grandpa Ott's Heirloom Morning Glory." They are purple. 

Here's what it says on the back of the package: "This free-blooming American heirloom has twining vines with heart-shaped foliage that quickly forms a romantic leafy canopy. Grandpa Ott's velvety, intensely purple flowers are subtly accented with a wine-red star and make a vivid garden display. ... Very early to bloom."

So I planted more than half the seeds in the packet in a plastic pot that is about a foot across, then I covered it with a clear plastic bag, and brought it indoors. My house has the perfect spot to start seeds: My living room and dining room each has a white-painted wooden window seat with steam radiators underneath. Just right for waking up seeds! The window seats become my plant nursery.

Asagao-ichi

I wasn't thinking of this at all when I bought the seeds, but morning glory is asa-gao (morning face) in Japanese, and some temples in Tokyo (as well as elsewhere in Japan, for all I know) have what they call an Asagao-Ichi, or market, when the plants are in bloom. 

You go to the Asagao-ichi to buy a potted morning glory, but not just any old potted morning glory--these are in pots with tall handles, and the vines have been carefully trained to climb up, over, and around the container. They are very pretty. 

Now I know what I'm going to do with the rest of the seeds. 

@ Jeanne Sather 2010. 

More Tales From the 'Gowned Waiting Room'

I've been treated with radiation therapy a total of seven times now, and Dr. Eulau at Swedish has been in charge of my radiation four times. He is an excellent doctor, one of a team of three or four good doctors who have helped to keep me alive for 11 years. 

So I have no plans to shuffle my team, even though my doctors aren't all at the same cancer center. 

When you go to the Swedish Cancer Institute for radiation therapy, you wait to be called for each day's treatment appointment in the "Gowned Waiting Room." You show up, change into a gown, lock up your things, and wait for one of your team of technicians to come and get you. 

Sometimes things are running behind--because of problems with your machine (you are treated on the same machine each time), or because the techs had to squeeze an extra patient into the schedule, or just because. 

This explanation will set the scene for the tale I want to tell about the Gowned Waiting Room. A lot goes on there, and, for those of us who are interested in people and in how the world works, it's a fascinating little place. 

So, about three weeks ago, on my very first day of treatment (this time), I was sitting in the Gowned Waiting Room watching the fish tank when two young women came by. They obviously worked at Swedish, and at least one of them seemed to be a radiation oncology technician. The other one might have been a new employee, maybe she was getting a tour?

In any case, the first young woman said something to the newbie about NOT HAVING THE PATIENCE TO LINE UP CANCER PATIENTS TO THE MILLIMETER ON THE RADIATION MACHINE.

Now, being lined up exactly is the reason I have small tattoos on every part of my body that has been radiated to date. The techs need to line me up exactly each time.  

Despite all my cancer center experience, I was shocked. So I took a good look at her: dark, curly hair down past her shoulders, a bit plump. Youngish--maybe 20s?

And when I was collected to go back for my treatment, I took a good look at the three or four people in the room. Nope, she wasn't there. If she had been, I like to think I would have refused to be treated by this person. 

I haven't seen her since, but I'm keeping my eyes wide open. 

See also: Tales From the 'Gowned Waiting Room'

Support this blog:

@ Jeanne Sather 2010. 

What Are Friends For?

 What are friends for?

Well, I think we all need a good friend--or two or three--who can make us laugh when we need a good laugh. And a really good friend can make us laugh at ourselves. 

The other day when I put up my post The Fat Cancer Patient, I was in a pretty bad mood about having gained eight pounds in as many weeks, as a result of taking steroids and also not being able to exercise. 

My friend Julie--who's been facing some tough times of her own lately--was the first reader to respond. Here's what she said, under the title "Not over till the fat lady sings":

Dearest Jeanne--Just read your fat cancer patient post and laughed out loud for the first time in weeks--not at you, but with you. 

We women are really something. We endure hours of humiliating and unpleasant treatments, struggle to get to the end of our driveways, and face the narrowing of our lives with courage--but we can't handle the pounds. 

I have to admit that the thing that made me happiest over the last eight weeks is the fact that I lost a bunch of weight. I'm a big girl--the kind way of putting it--and seeing the scale drop--for all the wrong reasons--just made me thrilled. Of course, it was because I wasn't able to eat anything at all but apple juice, and the fact that going off the Sorafenib got rid of the bloat, that made me lose the weight, and now that I'm able to eat, it's of course creeping back, but honestly, we just never give ourselves a break. 

I know all the reasons for wanting to get the weight back off, and I understand completely how difficult it is in the circumstances, but I want you to know from me to you that you are absolutely beautiful, and that no pounds more or less will change that. Don't forget, your advice to eat dessert first was great advice--which I'm following religiously these days--and that the weight will go when the decadron goes--it's horrid stuff. I'm going to eat a mini-cupcake in your honor right now. 

Thanks so much for all your honesty. What would I do without you?--J 

No, Julie, what would I do without YOU? 

See: Helping Julie:My Long Answer

The Photo: Monica Strasen shot this photo of my Classic Love Token Necklace Yes, it is for sale.

Support this blog: 

@ Jeanne Sather 2010. 

The Last-Day-of-Treatment Blues: Poisoned!

I've been to Hiroshima--many times, actually--and I know what radiation sickness can do to people. I had that in mind as I contemplated the effects of my most recent radiation therapy. After all, it's all the same thing.

Today is the last day of my 14-day run of radiation therapy. That's a lot of radiation, and of course it comes on top of five days of cyberknife treatment just prior to that, so I guess I shouldn't be surprised that I feel like crap today.

(Apologies for the language, but a softer word is not going to do.)

I have that swimmy kind of nausea. It's not violent like chemo nausea can be, I just feel like my eyes are a bit out of focus and my tummy is floating rather than attached. I don't want to eat, although an empty stomach can bring on more nausea. So I just drank a glass of cold milk, and that went down well. 

And the lower plumbing is rumbling and gurgling, again from getting zapped with all that radiation for three weeks.

So, I'm on my bed with the laptop, the window open for fresh air--which helps, big time--and Connie by my side. I'm going to do as little as possible this evening. Hoping that Older Son will be in a helpful mood when he gets home, because I'd like to ask him to go to the store and get me some pudding.

I had scrambled eggs for lunch, and a bowl of pudding for dinner sounds just about right. 

I'm falling behind on blogging--I probably have five or six posts waiting to be written--but that will need to wait until tomorrow. Time to baby myself.

Oh, one footnote: This morning I finished a bracelet for Julie, and it turned out really well. It's a charm bracelet made with bakelite buttons, and the buttons are three butterscotch scotty dogs and four chocolate-brown flowers. I gave it a test-drive today (I wore it to treatment) as I like to do to make sure there are no unanticipated problems with my designs.

I'll get photos taken this weekend, and then wrap it and get it ready for mailing on Monday. Julie e-mailed me this morning in response to my Fat Cancer Patient post, and she made me laugh out loud. I'll post that tomorrow.

@ Jeanne Sather 2010. 

The Fat Cancer Patient

I woke up the other morning and realized that I am FAT!

My face is puffy and my waist is huge. And since my hair is less than an inch long, I have no place to hide. When did that happen?

Well, it was a combination of factors:

Taking decadron (a steroid) to reduce swelling around the tumor in my skull, and then to prevent problems--like more swelling in my head--during the cyberknife treatments. I think the decadron is causing both bloat (water) and real weight gain (fat).

I've been on decadron since November. Argh.  

No exercise. I can't walk without a cane, due to the tumor in my left hip. Even with the cane, I'm not walking my dog right now and haven't for several weeks. It's too painful.

I just weighed myself, and I'm up eight pounds in two months. I weigh as much as I did when I was nine months pregnant with Younger Son. Ouch!

The Plan

I may not be able to go off the decadron, because I'm starting cyberknife again soon. (I have a call in to see if my appointments are on the schedule yet.) Or I could go off, knowing I'll have to take it again very soon. 

More exercise. The pain in my left hip is no longer as bad as it was, and I think I could manage water aerobics. I'm going to try to go twice next week. 

I am also going to start taking Connie out for short walks again, even if it is only five or six blocks. I can manage that with the cane without causing myself too much distress. 

I don't think I am over-eating, but I will keep an honest eye on my diet and maybe keep a food diary for awhile to see how much I'm really eating. 

Of course, I will enlist the aid of my closest friends, who include a personal trainer and a massage therapist. They will both be able to help me. 

@ Jeanne Sather 2010. 

 

Tales From the 'Gowned Waiting Room'

 First, let me set the scene.

When you go to the Swedish Cancer Institute for radiation therapy, you park in a Bank of America parking lot. Swedish provides free parking in this lot to patients who are undergoing daily radiation, and this is a nice little benefit.

Otherwise, I would have paid $6 a day on each of the 15 days I've gone in for treatment. That's $90. 

Then, you enter the cancer center, walk past the desk where other patients are waiting to see the radiation oncologists, and continue on down a hallway to the "Gowned Waiting Room."

How do I know it's called the "Gowned Waiting Room"? There's a sign, of course.

A woman named Diane is in charge. She knows all her patients by name, no small feat considering that more than 100 patients come through every day, and even remembered my name when I showed up again after an absence of two years. Now, she does persist in calling me "Jeannie," despite my correcting her an embarrassing number of times ... I've let it go. Lost that battle. 

Diane has a talent for smoothing down stressed-out cancer patients, and I don't think this is a skill that can be taught. She just has it. She was probably born with it. 

The great thing about the Gowned Waiting Room is the way things are organized. I've been in the radiation oncology departments of several other local hospitals and cancer centers, and they are NOT organized like this. As a result, they waste their patients' time.

(Who--or where--am I talking about? The University of Washington Medical Center, where I've been treated. SCCA, where I've also been treated, and Northwest Hospital's radiation oncology clinic, which is actually a branch of the clinic at Swedish. I refused to be treated there, but I've been in the clinic for a consult.)

Patients stroll into the Gowned Waiting Room at their scheduled appointment times. There are three or four little changing rooms at the back of the waiting room, and patients just go ahead and change into gowns, lock up their things in a locker, and then wait to be called back for treatment. 

Once you've been zapped, you come back to the Gowned Waiting Room and change back into your street clothes. 

The Gowned Waiting Room has a huge fish tank with brightly marked tropical fish. A guy comes in once a week to clean and maintain the tank. I asked him about his job, and he said he works for a company that does nothing but maintain fish tanks in public buildings. Swedish apparently has a number of them scattered throughout the hospital and cancer center, but I forgot to ask how many.

Of course, watching fish in a tank has been proven to decrease stress and lower blood pressure. That's why dentists and pediatricians often have them, plus cancer centers.

The photo: I don't have a fish tank at home, but I do have a water garden outside near my front porch. The water garden is home to two goldfish at the moment. These guys are at least four years old and fat and happy. It also has a water lily and a bamboo spout to circulate the water.

In the summer, when I'm outside or have the windows open, the water garden drowns out traffic noise from a nearby busy street. 

@ Jeanne Sather 2010.  

I Can't Believe I'm Awake

Normally (that's the New Normal of living with cancer, mind you), I sleep 12 hours or more a day.

So it makes no sense at all that I couldn't fall asleep until 3 a.m., despite taking pain meds and a sleeping pill, and then I'm awake again at 5:30. What is going on?

The pain in my left hip that has been making my life so difficult for the past few weeks is actually getting better, not that I think I'll be able to skip the cyberknife treatments to that hip which are up next on my treatment agenda. 

And today is the final day of my 14 days of radiation therapy to the right hip.

I'm glad that is over, or almost over, although it was a piece of cake, really. The radiation oncology clinic at Swedish is so well organized, the techs who actually take care of you are wonderful, and you meet great people in the waiting room. I think I'll take in a box of chocolates or some cookies to mark my last day. Or bake a cake, to mark the "piece of cake" aspect ... Is that too cute?

The only good thing about how little I'm sleeping is that I have a lot of time for making jewelry, and the pieces are just flying through my hands. Poor Monica, my photographer, can't keep up. After all, she has a full-time job in addition to her photography business.

I need to call Dr. Lee the Second and see what plans he has for me re: cyberknife, round 2. And I need to call Dr. Lee the First to make sure that he realizes that I can't go back on chemo until after this next round of cyberknife. I'll make those calls once the rest of Seattle is awake. 

Cyberknife Guy says there hasn't been any research on Avastin (one of the drugs in my new regimen) and cyberknife together, so we will be safe rather than sorry. Or safer, anyway.  

@ Jeanne Sather 2010. 

Noah's Ark

 This charm, a tiny Noah's ark with two giraffes poking their heads out from the boat, is part of my favorite piece of jewelry. 

At least, it's my favorite today, maybe even my favorite this week ... 

Jump over to Charmed Bracelets to see the Noah's Ark With Giraffes 

@ Jeanne Sather 2010.