Good News, and Bad News

Hi. This should have been posted a week ago, but I haven’t been up to it. I’m still not, really, but its past time. If it’s not coherent, please forgive me.

We have good news and bad news. I’m posting in the order we received it. You can read it in the order you want it.

The Bad News

On Friday, January 8, I went for another CT Scan. We got the results when we went in to see my oncologist on January 13.

The Dacarbazine isn’t working. The tumors in my lungs are continuing to grow. Two of them have merged, and my lung capacity continues to drop.

In addition, I’m coughing like crazy (productive, not dry.) We have decluttered so it’s easier to dust, and have gotten a fancy humidifier so it’s not as dry in the house. This has helped, but not solved the problem. In addition, I’ve been running a fever for weeks now. Currently, it’s 101.2° in spite of the fact that I took aspirin about two hours ago.

My oncologist seems to think the fever is caused by the cancer. Whatever the cause, between them, the coughing and fever are wearing me out.

The Good News

We heard from the genetic testing company today. I’m approved for 100% financial aid for four different kinds of genetic testing of the cancer, to see if there is a targeted biological treatment. So we will be moving forward with that. Anything that insurance doesn’t cover, they will.

Where We Go From Here

Since the Dacarbazine isn’t working, those infusions have stopped. Instead, I’ll be taking an oral chemo called Pazopanib (Votrient®).

It’s hideously expensive. Our insurance covers it, but our co-pay would be $3K a month. So we have filled out paperwork to get financial aid for that, too. There’s a program, from the drug company, that would get us the pills for free. However, it’ll be several more days (minimum) until we hear from them and I can start treatment.

So That’s Where We Are

I’m starting to really feel it, and am able to do less and less. But I don’t feel short of breath, and my O2 at this moment (according to my handy oximeter) is 96. Not as good as it’s been, but not bad at all.

Michael was really worried, because he thought that if the Dacarbazine didn’t work, the doctor would say there was nothing they could do, and he’d start talking about palliative treatments. Now he knows that’s not happening, he’s feeling some better.

Still, he’s isolated (like all of the rest of us) and having to take on more and more house work. If you feel like it, and you have his phone number, he could really use a friendly call. (He approved this, so it’s not like I’m asking behind his back.)

There are a couple of other things that look kind of hopeful in the offing too, but they are tentative enough that I’d rather not discuss them quite yet, in case they fall through entirely.

I’m still fighting! I haven’t given up hope, and I thank you all again for all your love and support.

Love all of you!


Cancer Log 20.11.20

Well, here’s what’s going on.

I had another CT Scan on November 2. The results are not good. The Doxil was ineffective. The nodules have all pretty much doubled in size since the last scan, on August 21. The largest one is now 4 cm. I have at least 8 of them, of various sizes.

We spoke with the Physician’s Assistant on November 10. At this point, we’ve gone through all the standard protocol for Phyllodes tumors. She told us there were three directions we could go.

The first was to try another drug, called Dacarbazine. It’s an old drug, which has been useful against a range of cancers in the past, and is generally well tolerated. Along with that, we can enter my name for experimental drugs. There are two kinds of those. One kind has been through the first stages of testing, and they have them there in the hospital to use. The other kind is still in the first stages, and they don’t have any. She knows that none of the ones that have been tested work with my kind of cancer, so I’d be taking the untested ones.

The second direction is to have the tumor itself genetically tested, and see if there is a drug that’s tailored to those genes. There’s not a good chance of that, since my cancer is so rare, and the test is very expensive. She gave us paperwork, and it’s $3500. So she recommends that approach only if insurance will cover it.

The third direction is to do nothing for a while, and let my body heal up from all the chemo. The cancer itself isn’t bothering me at all yet. I have no pain, because there aren’t nerves in the lungs, and so far I don’t seem to be having any trouble breathing at all. My O2 levels, on my little home oximeter, are running in the mid nineties.

We asked about other treatments, such as radiation, or proton treatments. The answer is that the proton treatment is really good for surface tumors. Mine are too deep for that. She showed us the CT Scan, and I couldn’t have put the largest one deeper into my body if I’d tried to. It’s smack in the middle of my lung front to back, a bit closer to the middle of my body than the outside. There are also too many for radiation, and some are still pretty small.

The thing is, the cancer is pretty aggressive, so I want to be aggressive right back at it. From my point of view, option 3 is off the table.

We discussed it briefly, and decided to go with the first option, and look into the second and see if insurance will cover it.

So I had the first infusion of Dacarbazine on November 18, day before yesterday. So far, it’s made me more nauseated than any of the others, but oh well.

I’m sorry that I didn’t write all this up and post it before, but the Doxil did a real number on my hands. For a couple of weeks I basically had to ice them frequently, and couldn’t use them at all. Right now, they look horrible, because all the blisters have been drying and peeling, but they feel pretty much normal again. 

So I’m back working, and able to type comfortably once more.

And that’s where we are. 

I haven’t given up hope. And I thank you all so very much for all your kind thoughts, prayers, and support. I appreciate it all very deeply.

Love every one of you!

Cancer Log – 20.8.29

I have good news, and bad news.

The good news is that I don’t have to have any more Taxotere. This is good, because I … wasn’t tolerating it well. To put it mildly. For days after taking it, I could barely get out of bed. If I walked from my bedroom to my recliner in the living room, my heart would pound. It’s been causing me to have a fever for weeks, and all kinds of other adverse effects that I’m not going into, because it’s all over now. Or it will be, once it’s fully out of my system.

The bad news is that the reason I don’t have to have it is that it wasn’t working. The cancer has been continuing to grow pretty quickly this whole time.


My oncologist is switching me to Doxil (doxonrubicin liposomal.) It’s related to the doxorubicin that we know was working before, but that I can’t have more of because there’s a lifetime limit. There is a lifetime limit on this one, too, but I haven’t had any yet, so it’s good. There is also a chance that it’ll affect my heart, so I’m supposed to go in for an echocardiogram before I start. That hasn’t been scheduled yet, but the actual chemo is supposed to start on September 10.

In the meantime, I have some time off to recover from the taxotere. Which is good, because I need it. 😀

I’ll post more when I know more.

Deep thanks to everyone for all your good thoughts, prayers, candles and everything. I really appreciate all of it. I have to say that I have no idea how I’d manage all of this without Michael. He’s been wonderful. But the stress is getting to him a bit. I know it was really hard for him to watch me while I was flattened by the taxotere. So… umm… if you could include him in all the good stuff you’re sending my way, that would be great.

Thanks again!

Cancer Log 19.12.21

Hey people! Happy Solstice!!

I had the echo cardio gram and it showed my heart was fine. My Hemoglobin was down to 8 – normal is12 to 16. So the Dr decided to go ahead with the last session of Chemo and to give me 2 units of red blood cells (Note: not whole blood.) So I went into the infusion center on December 12th, and had the 3 full days of Chemo. They gave me one of the units of blood on Friday, the other on Saturday, (My hands and face turned pink for the the first time in weeks.)

However, as expected, the Chemo really whipped me – to the point that although I am dictating this, Michael (retired now) is typing it in. I still don’t know how we’ll publish this, but if you’re reading this – we managed.

So, Chemo is over, and there was much rejoicing! I went into the local U of M clinic to have my blood drawn for testing Thursday the 19th. The test showed that I had a hemoglobin reading of 9.8. It’s better, but I’m still quite anemic. On January 6th I go back to get a CT scan to see how effective the Chemo has been. On the 9th I talk with the Dr again to discuss future treatments (if any).

Thanks for all you kind thoughts and well wishes! Enjoy the holiday season and you should hear from me again in the new year!

Cancer Log 19.11.19

I have great news!

As you might know, last Friday, Nov. 15, I went in for a CT scan. I haven’t heard from the doctor yet, but I got an e-mail today saying that the test results had been posted to my Patient Portal. So I grabbed my courage in both hands, and took a look.

It’s working! The summary of the test result says that compared to the CT scan from September 12, there has been a significant decrease in the size of multiple scattered non calcified pulmonary nodules, and then goes on to explain that, of the three listed, two of them are half the size they were (down from 8 mm to 4 mm) and the third has decreased from 12×8 mm to 8×4 mm.

So my cancer is in the one third that do respond to this chemo, and the tumors are going away.

I’m so glad that I changed doctors, since the previous doctor had decided to stop a therapy that was actually effective. It also makes me wonder just how big they got before they started to give me chemo!

But yay! This makes all the discomfort of chemo well worth it.

As mentioned, I haven’t spoken to the doctor. I’m pretty sure he (or his assistant) will be going over things with me on Thursday, when I see him (or her.) I’ll know after that how many more sessions there will be before I get a break, and all that good stuff. Since that’s also the first day of the next session of chemo, I don’t know if I’ll be up to posting right away, but I’ll try to at least put up a quick post letting you all know that. Or I’ll see if Michael can.

Thanks again for all your good wishes, prayers, and positive energy! 

Love you all!


Cancer Log – 19.10.4

Yesterday I had an appointment with the new doctor at the University of Michigan.

Unlike other doctors, both he and his assistant (an internist who is planning to become an oncologist) examined me throughly. The bronchitis (or whatever it was) segued into a cold which isn’t quite over, so I was wearing a mask and coughing some. Neither one seemed to think it anything out of the ordinary.

The upshot is; I had a CT scan May 6. Chemo started July 15. The CT scan on September 12 showed a slight increase in two nodules, but because there was no CT scan taken in July there is no way to know when that growth occurred. Or how much growth there was that might have been reduced, for that matter. So it’s impossible to say with any certainty that the chemo isn’t working.

So the U of M doctor (hereinafter known as my oncologist) is going to try the chemo again. It starts next week, and we’ll do two sessions and another CT scan to see what has happened. If it’s working, then we’ll do another session, or perhaps two, and then give me a break, followed by as many sessions (and breaks) as needed.

If it’s not, he knows exactly what drug cocktail he’s going to use next. He even told us the names of the drugs, but I don’t remember what they are. (I’m blaming it on having a head full of mucus.)

He’s also going to consult with a thoracic surgeon to see about the feasibility of surgery to remove them. A lot will depend on how many of the tiny little nodules in my lungs are actually cancer.

It turns out I have dozens of them. I thought all the rest were scar tissue (my poor lungs have been through a lot, starting in my infancy,) since only a couple were bright on the PET scan, but that might not be the case.

My oncologist explained that PET scans work by bonding a radioactive tracer to glucose, and injecting it into your bloodstream. Then they see how much of that glucose various cells have taken up. Things that always take up a lot of glucose, like your liver and brain, are always bright. Lungs aren’t so much, because they don’t use as much glucose. Cancer, of course, does. But tumors that are too small to use enough glucose also don’t show up on a PET scan. So, we know for sure that one of the nodules is cancer, because it was biopsied. We’re assuming the other bright spot is also cancer. But there’s no way to tell for sure about all the spots that didn’t glow. They might be scars, or they might not.

We’ll have to keep an eye on them to see.

But, for now, I’m going back to an infusion center, as an outpatient this time (yay!) Three consecutive days, six to eight hours a day, depending on how well I do with it. I’ll be wearing a doxorubicin pump home, and the Neulasta shot will be one of those packs on my arm (as seen on TV) or a shot I can give myself. So I’ll be sleeping in my own bed, eating my own food, and I won’t have to go all the way back to Ann Arbor for the shot the next day. And there was much rejoicing.

They have to squeeze me in, so we don’t know what days I’ll be going yet. They will be calling (eventually) to tell me.

I’m so glad that I’m now seeing an oncologist who knows what he’s doing. Michael called the other one, and told her I’ve switched doctors, so she won’t wonder what happened, or keep trying to make appointments for me.

And that’s where we stand now. I’ll try to answer questions if any of you have them.

Love you all!

Cancer Log – Earthdate 19.09.17

On Monday, September 9, I went in for a CT scan with contrast. It went as well as any test where you have to drink 3 glasses of barium can go. At least it was the watery barium, not the thick stuff. Good thing I don’t mind the taste of bitter things. (I have been known to eat unsweetened Baker’s Chocolate, when I really need a chocolate fix!) I also got a shot of iodine right into a vein. It felt kind of weird, but didn’t harm me in any way.

On Wednesday the 11th, I woke up feeling kind of bad. By afternoon my fever was up to 101.3° and I had a knot in the middle of my chest, right under my sternum, that was making it hard to breathe.

By 5:30 am on Thursday the 12th, I could barely breathe at all, and my fever was up to 101.6°. One of the things they tell you when you start chemo is that if your fever goes over 101.5° you have to go to the Emergency Room. So off we went.

They were extremely nice, accessed my port, took a bunch of blood, and gave me Tylenol, fluids, and an IV antibiotic. They also took a chest x-ray and (on the orders of my oncologist) another CT scan, without contrast this time. They told me it all looked clear, made sure my temperature was back to normal, and sent me home. Where my fever went right back up to 102.1°.

On Friday the 13th we had a long-scheduled appointment with my oncologist.

First, as usual, we saw the resident. He looked at the CT Scan from the day before, and told us it showed enlarged lymph nodes in the center of my chest, and a small pocket of fluid in the pleural cavity of my right lung, both almost undoubtedly from the infection. He said the fluid wasn’t enough to do anything about. But, he said, the nodule in my lung had increased in size from 0.5 cm to 0.8 cm.

Then my oncologist came in, said that the cancer had spread to my lymph nodes and my pleural cavity, (which isn’t something phyllodes tumors do,) and that the nodule had more than doubled in size to 1.1 cm. All of which showed that chemo wasn’t working, so she was going to stop treating me for two weeks. She admitted she didn’t know what to do next, since my cancer was so rare, so she sent me home with a script for antibiotics (without even listening to my chest, or examining me in any way) and scheduled a test to sample the fluid.

She also said she’d be sending samples of the tumor off for Next Gen Sequencing, to see if there was a treatment for any genetic mutations in the tumor. That was so expensive that I had to fill out paperwork for financial aid (which I’m sure we aren’t eligible for.) There also should have been blood samples in a special kit for genetic comparison, but my doctor failed to let the office staff know about that. (They called after we got home to say they needed the blood, could we come back Monday.)

Michael got the script filled. But when I read the package insert, I found that that particular antibiotic could permanently damage tendons and nerves, and that the tendon damage was more likely in patients over the age of 60. (Me.) It also said not to take it if you have Ehlers-Danlos Syndrome, because it can cause an aneurism. (Also me.)

The thing is, Michael and I promised each other, after the last time, that we’re not going to wait until a doctor half kills one of use before we switch doctors ever again.

So, on Saturday we went to an urgent care, and got an antibiotic that wasn’t likely to cause more harm than good. (Note: when a drug says to take it with a snack or small meal, they really mean it. Ignore that at your peril!)

Then yesterday, we cancelled the blood kit, called the specialist in Ann Arbor, and asked if he’d take me as a patient. We’ll be seeing him on Oct. 3.

Today the pain and knot in what I’m assuming is my bronchial tubes is gone, although I’m still coughing quite a bit (not as much as yesterday, though!) My fever as I write this is 99.7°. Oh, and the catch on the right side when I breathe, which I’m guessing was the fluid, is gone. So, still not well, but much, much better. 

And that’s where we stand now. More news as I have it, and am able to write a blog post. 

Love you all!

What’s Going On

As you may have noticed, I haven’t written a new blog post in more than a year. There are reasons for this, and it all boils down to I haven’t been at all well. But I’m getting better! (I hope.)

For a long time – years – my energy level has been steadily dropping. Last November, just before Thanksgiving, we found out that the reason was that I had developed diabetes, and it was Really Bad. It had gotten so out of hand because I had a Very Bad Doctor who, although I’d informed him I had diabetes on both sides of the family, and needed regular blood tests, hadn’t been doing them. (Kids! Ask for the results of all your blood work! Don’t let the doctor tell you, “If you don’t hear from me, it’s all normal.”)

The diabetes is completely under control now. I’ve even been able to go off the insulin, and am managing the disease with just diet and exercise. I was feeling better than i have in years!


Because we (needless to say) fired that doctor, and because we also switched our insurance (I am finally old enough for Medicare,) we wound up without a doctor until early April.

By then, a lump that I’d had in my right breast since November 2005, and which had twice been diagnosed as benign, had started to get weird.

Cut to the chase; it turns out that I have stage four cancer. Not a common type, because why would I do that? I have phyllodes tumors. In my case, it grew very slowly for 14 years, and then went nuts, growing from the size of my fist to 15 pounds between April 3 and June 15. I had a double mastectomy on June 15, and surgery went very well. So that part is gone, and there was much rejoicing.

However, because of the years and years of neglect, mine has metastasized to my lungs, where I have two very small tumors. So my oncologist has me on chemo. There’s no need to go into details but chemo isn’t any fun, and it doesn’t leave me with a lot of strength to do other things.

I’ll try to keep anyone who is interested updated via this blog, because people have been asking. I’m (obviously) not keeping any of this secret, so if you want to talk about it with others, send energy, pray, light candles, and so on please feel free.

Just don’t expect a whole lot from me for a while. My energy is kind of wrapped up in getting well.

Thanks for reading. I love you all!


Transgender Bathroom Panic

Unless you’ve been hiding under your bed clothes for the last couple of months – and I don’t blame you a bit if you have, we’re a fair way beyond “crazy” at this point – you know that we’re in the middle of a Bathroom War in the US just now.

It’s been framed as a conflict between the “common sense” rule of keeping men out of women’s private spaces, and the “dangerous” practice of allowing them free access.

I have a few things to say about that.

In the interest of full disclosure, I should mention that I’m cis-gendered, which means the doctor happened to be right when he assigned the gender on my birth certificate. I also have a lot of trans friends. And no, I’m not going to tell you who, because all but one are deeply closeted. That one is Gwendolyn Ann Smith. I will tell you that I count 3 trans women, including Gwen, among my closest friends and I know dozens of others.


This whole thing, from where I stand, is actually about two separate issues.

One is safety in public restrooms. Let’s get that out of the way.

It’s a real problem, and it should have been addressed years and years ago. Women, girls, and little boys are at risk of assault when they use public facilities. It doesn’t happen a lot, but it does happen, and it happens because bathrooms are tucked away for privacy. There’s little chance an attacker will be caught. That’s the real reason that women go to the restroom in clumps; there is safety in numbers. The only thing this has to do with trans people is that they are at far higher risk than non-trans people. There are zero cases of trans people being the aggressor.

You want some links? Have 3, chosen totally at random. A 16 year old girl died in Delaware after being beaten in a bathroom. A 15 year old girl was raped in a bathroom. A 23 year old woman was raped in a Manhattan bar.

  • Note that none of these cases involved anyone who was trans.
  • Note that in none of the cases did the man don a wig and dress to commit his crime.
  • Note that laws that do, or do not, allow trans people to use a bathroom where they are comfortable – or at least, less uncomfortable – have no bearing at all here.

It’s not about trans people.

It’s easy to fix.

We need to put public bathrooms in high traffic areas. The toilets need to be in actual little rooms with lockable doors (not stalls that people can peep over, crawl under, or peer through the cracks of.) There should be a “panic button” on the wall for people who need help, because that happens; especially with senior citizens or people with disabilities. The sinks should be out in the open, where they can be seen by everyone.

If we did that, then it would be safe for everyone to take care of bodily functions.

Since the toilets would be completely private, there wouldn’t be any need to have any kind of gender anything. No one would be able to loiter unseen, because they would be clearly visible to everyone.

But all of this isn’t about any of that, is it? If it was, there wouldn’t be so many untested rape kits in North Carolina.

This is about the right of transgender and gender-non conforming people to exist at all.

The people screaming about the sanctity of their bathrooms are really fighting for a binary world. For a world in which things are black and white, male or female, yes or no. They are fighting for absolutes.

People like binaries. It makes choices clear and easy. It’s the lazy way to deal with differences. You are either one or the other. Us or them. Liberal or Conservative. Girl or Boy.

The problem is that nature doesn’t do binary at all. Not in anything. Between day and night, there’s always twilight. We only know when Winter becomes Spring because of the artificial conceit of a calendar; there’s no clear demarcation in the weather. Heck, we can’t even really draw a line between animal and vegetable!

In real life, all the lines blur. There are always liminal spaces that aren’t exactly one or the other, but have some characteristics of both.

This is true of everything, including human biological sex.

Trans people, far from being “unnatural” are proof positive that humans are part of the natural world.

I’m not going to go into all the stuff that happens, between chromosomes, hormones in utero, and embryonic development that causes a baby to be born with enough differentiation for the attending doctor to assign a gender. Suffice it to say it’s not nearly as clear cut as you learned in biology class. Sex chromosomes don’t always come in pairs. Things like Complete Androgen Insensitivity Syndrome cause people who are genetically male (46XY) to have female sexual characteristics at birth. Women with XY genes have even give birth.

So it’s not surprising that people can have outward sexual characteristics from one gender, while knowing that they really belong to the opposite one. Or people who are uncomfortable being assigned to either box.

We don’t really know what causes internal gender identity, although we might be learning.

We do know, however, that Gender Dysphoria is a real thing. It doesn’t go away. It feels horrible. It can kill, if it’s not treated.

So what it comes down to is this; do we accept people’s own reports of their lived experiences, or not?

If we do, then we have to agree that someone who knows to the bottom of her soul that she’s female is female, whether or not she has a penis. Someone who identifies as male, is male, even if he happens to have a vagina.

If not, of course, then you insist that you are omnipotent; you know what other people are feeling and thinking better than they do themselves. How that assumption of god-like powers can not be considered blasphemy is beyond me, but I digress.

Because here’s the thing.

Trans people are people.

Like everyone else, they should be treated with respect, kindness, and honor. Everyone should be, no matter what.

At the beginning of this post, I said I know a bunch of trans people. The most important thing about them?

Being trans isn’t the most important thing about them.

They are artists, writers, computer programmers, health workers, teachers. They have rich or complex relationships with their parents, siblings, children, and friends. They have different things they like or dislike. They are all avid science fiction readers, like nearly everyone else I know. They are all the things that everyone else is, and it’s those things that make us friends.

The only reason to care about someone’s gender is so you know how to treat them.

If you are treating people differently based on their gender, that’s a problem I think you should address.

In other words, let’s go for true gender equality, and stop worrying about the gender of other people.

Picture Attribution; the transgender flag: harvey milk plaza, castro, san francisco (2012) by torbakhopper Used under a Creative Commons 2Generic License. Slightly cropped and resized.

Dizzy Days – Oh, Vertigo

I’ve been fighting some kind of bug for the last week or so. You know, fever, congestion, cough, achiness – the usual. I’m sure a lot of you have had it too. It’s been going around.

For me, one of the symptoms is usually extreme dizziness. Being sick tends to aggravate my Meniere’s Disease, and cause episodes. On Monday it was so bad that I was forced to use the walker that Michael made me buy. I’m so glad that he did, too! It makes it possible to get around when I’m so unsure on my feet that I would otherwise be going hand over hand along the walls.

I wrote this little 300 word piece to express what it’s like, being dizzy like that.

This is a dizzy day.

I have them, sometimes. I wake up, and I’m dizzy. Or I wake up fine, and then somehow, suddenly… vertigo.

I have Meniere’s Disease. It happens.

I can go years between attacks. We all can. But lately, I’ve been having a lot of them. It was so bad a couple of weekends ago that I had to be taken out of IKEA in a wheelchair. It was so bad last weekend that I gave in and got a walker.

It’s weird.

When I was small, I thought being dizzy was delightful. I would do things to make myself dizzy. I’d beg Uncle Harish to hold me by my arms and spin me through the air until I was giddy. I’d twirl around and around. I’d lean far back while swinging, and let centripetal force have its way with me.

I thought it was hilarious to stagger in circles, ground pitching under my feet, trying to walk while the world whirled madly around me. I’d be disappointed when the feeling wore off, and jump to my feet, eager to “do it again!”

My how times and tastes change.

Now I sit here, the room slowly rotating, wishing it would wear off! I notice I’m holding my head on one side, which seems to lessen the effect slightly, and wonder how much I’ve been doing that lately.

Is that a symptom? A warning? Because that’s the most dangerous part.

There is no warning.

There never is with Meniere’s Disease. It’s part of the diagnosis.

My sister is convinced it’s an ear infection; if I take the proper drugs, it will all go away.

But I know better.

It will go away when it goes away, and nothing really hastens it along.

Until then, Dizzy Broads R Us.

Picture Attribution; image twenty-one; spinning by RCabanilla Used under a Creative Commons 2Generic License. Resized, but otherwise no changes made.