Yet More Bad News

So, more unpleasant news I’m afraid. This is Mike writing a very long post for Robin who just can’t.

The 3 months since our last blog post in January have not been good.

We’ve told you about the Pazopanib. (The very expensive oral chemo drug.) We were approved for the free program, however with paperwork snafus, delays due to what COVID has done to so many companies with people working from home, and just plain inertia getting a committee to meet and approve the application, the drug did not get shipped to us until just two weeks ago. (More about this drug later.)

Because of the delays, after several weeks, our Oncologist tried another, older chemo named Vinorelbine (Navelbine) which has shown some effect on the type of cancer Robin has. (I’ve seen the abstract of one of the case studies myself.)

Navelbine is administered by IV once a week for three weeks in a row and then a week off for several rounds. This drug can cause nausea and diarrhea, and Robin has had some pretty bad bouts of them.

After the first infusion, on Monday, March 1 – less than 72 hours before her second infusion, both Robin and I were given our first dose of the Moderna COVID vaccine. The vaccine’s effects were mild for me, more tough for Robin. In addition to the gastro-intestinal problems from the chemo, her fever went up, she was extremely short of breath, and she had muscular weakness that was truly frightening. We consulted with the online nurse at BCBS and with the Oncology staff at U of M who told us to call 911 and get to the local Emergency Room. There they treated Robin’s fever and nausea. They ran blood tests, consulted with our Oncologist, and found that her potassium was low. They treated her with potassium chloride, made us promise to talk with our Doctors and let us go home.

Things were fairly good for a few days, but then Robin began to show the symptoms again. This time instead of waiting until she couldn’t move, we got her out of the house, into the car, and I drove her to the U of M Emergency Room.

After much testing and debate they decided to admit her. She was there nearly a week while they tested, examined, and treated her with supplemental oxygen, fluids, potassium, anti-nausea drugs, antibiotics, etc.

We came home with prescriptions for all of that and had a visiting nurse and physical therapist as well. The supplemental oxygen has been a trial; tubing all over the floor and getting in the way when we move Robin from room to room. I’ve been providing the bulk of the home health support, but even as careful as we have been, Robin tripped and fell which bruised her badly and scared us both half to death. (Nothing more than the bruises, but it took us more than 20 minutes to get her off the floor and into her chair.)

We have had two video visits with the Oncologist. At the last one, we were told not to start the Pazopanib given Robin’s current weakened state. When I asked directly, he told us that we should probably arrange for home hospice care.

So, that is where we are now. We have spoken the Angela Hospice here in Michigan who will be sending out a nurse to evaluate Robin’s condition and we’ll be setting a schedule for a different visiting nurse and a medical aide. There may be other services as well. Also, staff will be on call 24/7 if needed. We got a hospital bed on Tuesday (4/13) and put it in the living room so that Robin can sit up to talk and eat without having to use her walker to move around the house.

Robin continues to decline, and her lung function is very low. We were at the maximum setting for Oxygen flow provided by the concentrator we had here. The hospice has given us better equipment which supplies more oxygen.

Many of you who read this blog already know some, or even most of this. For some of you this will be new. I am writing this to let you all know exactly what is going on. I (we) need you to know that both, Robin and I, are in good spirits, and that we are facing this together. We are more grateful than we can possibly say for the love and support you have and continue to give us.

Some of you have asked if there is anything you can do for us. Robin says that she hopes to pass over peacefully in her sleep. So, work and pray for that and for her comfort.

– Michael Short for Robin Wood

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!

Not Great News

This is a really hard post to write, which is why it’s taken me so long to write it.

On July 1, I went in for the next followup CT scan.

The cancer is back, with a vengeance.

On this scan, the tiny little nodules I had have grown. A lot. The one that was 1 mm is now 5 mm. The one that was 3 mm is now 15 mm. Two of them are now 16 mm, and the remaining one that I had is 12 mm. And I have 4 new ones between 2 mm and 4 mm. 

They are in both lungs.

So I’m back in chemo. My first session was today. I can’t have the same drugs I had before, because of the lifetime limit on them. So today I got my first dose of Gemcitabine (Gemzar). Next Monday I go in again, and get both that one and Docetaxel (Taxotere). Then I have a week off.

This patten repeats again, and then I have another CT Scan, so we can see if it’s working. 

The side effects are pretty much what they were before. (And I just got my hair *back*!)

On the good side, I was starting to feel really good again, so I’m going into this from a fairly healthy starting point.

I’m not giving up. I still intend to beat this.

But that’s where we are now.

I’ll let you know the results of the next scan when we have them. It’ll be seven or eight weeks.

Thanks again for all your support.

Here we go again.

Great News – April 2, 2020


I should have posted this yesterday, or at least earlier today. But I’ve been distracted, working on a new tutorial about the Line Tool in Photoshop.

As some of you know, I’ve been battling cancer for the last year. Yesterday, I had a CT scan, blood work, and a video visit with the physician assistant who works with my oncologist.

It’s all good news!

The remaining, very tiny, nodule in my lung is stable. It’s probable that it’s scar tissue, not cancer. My blood work looks great. I have a tiny little bit of anemia left, but that’s all. I’m no longer immunocompromised, and I don’t need any treatment. I’ll have another CT Scan on July 1, because we need to keep an eye on it, but so far, so good!

Which is why I’m working on other things.

It’s taken me longer than I thought to get over the chemo. My hair is starting to grow back, but I still have “chemo-brain.” I forget what I’m doing while I’m doing it, it’s a bit hard to focus my eyes, and I don’t have a lot of stamina. But I’m getting better every day. At least, that’s what I tell myself. (And Michael agrees.)

For those of you who want to know when I can sign cards and things, ummm… not quite yet. I’m still a bit shaky, and autographs (unlike the stuff I’m doing on the computer) don’t have an “undo” function. I don’t want to mess up your cards or books. Thanks for your patience. I hope to be able to do all the things I used to do in another month or so.

Until then, I’m working on things for Second Life, working on tutorials, and yes, Michael and I are being very careful. I’ve only left the house for the tests and Michael is wiping down everything that comes from the grocery store with antiseptic wipes. 

Take care of yourselves, and thanks again for all your kind wishes, love and support.

I love you all!

Cancer Log 20.1.10 (January 2020)

I don’t know how, but somehow people are reading this as if it’s current. It is not. This post was from January 2020. The cancer appeared to be in remission for several months, but when I had the scheduled CT Scan in July, it was back So far, I haven’t been able to push it into remission again. But I haven’t given up hope!

More really great news!

On Monday, I had another CT Scan. Yesterday, I had some blood work, and went to my oncologist again.

 I’m still anemic, but the rest of the blood work is pretty much back in the normal range. My immune system and platelets are back on line. Yay!

The nodules have gotten even smaller. (The raw numbers are about the same size as I reported last time, because, as the doctor explained to us, different radiologists estimate the size of things this tiny differently. So they compare the two scans, and note the size (as they see it) for the one in November, and the size of the one this week. The nodules are about half the size they were.)

They are now too tiny for surgery. The surgeon wouldn’t be able to find them. They are so small, my oncologist said, that it’s possible there are no cancer cells left, and what we are seeing is just scar tissue. 

All three are in the upper lobe of my left lung. The one that the original PET scan found in my right lung seems to have vanished, according to the doctor.

So, he told us, we now have two choices. I could have another two sessions of chemo, or I can have a break for a couple of months, and then another CT Scan to see if anything has changed.

I asked which he recommended, and he said the break. Which means that I can recover completely from chemo before anything else has to be done. If anything else has to be done at all.

So that’s what I’m doing! We go back on April 1 (which is the perfect day for it) and if all is well, which I think is what he’s expecting, then we just go back every three months for another CT scan for the rest of my life. In the meantime, I have a five o’clock shadow on my scalp, and my eyebrows are itching, because the hair is growing back in.

As my oncologist left the room, he said, “Congratulations!”

So, with any luck, that’s it for the Cancer Log, at least for a while. We now return you to the regularly scheduled blog, about Second Life and the occasional short story, if anyone is interested in short stories!

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 – 19.10.25.

I know that some of you have been waiting for me to tell you how the new treatment went. I’m sorry it’s taken me this long to write the post. I had the extra two weeks off between sessions, and somehow, in that time, I forgot how bad the chemo makes me feel. 

So, the last session was at the Medical Center at the University of Michigan, October 2, 3, and 4. I went there each day, and came home at night, instead of being admitted to the hospital. It was much nicer to be able to sleep in my own bed, and eat Michael’s cooking, and generally be away from it all every night. 

I was told I’d have a private room, with a private bathroom. That wasn’t strictly true. I had a private room with a private toilet and sink, and a curtain I could draw around them. I could also close the door into the area where all the nurses were working, so it was private enough to be comfortable. 

I had the private toilet because they were keeping track of how much fluid was going out, as well as how much they were pumping in. Something they didn’t do in the hospital. 

The doxorubicin was delivered via a pump that lived in a fanny pack. It worked flawlessly. I have it at home now, and I have charged the battery for the next session. 

The other big difference was the delivery of the Neulasta. That’s the very expensive drug that boosts the immune system; pretty much necessary after each session of chemo. 

Before, my former oncologist was having me drive all the way back to Farmington Hills on the Monday after the session ended to get the shot. That meant that I wasn’t getting it until about 50 hours after chemo ended. The recommended timing is 24 hours. 

This time, they stuck a gadget on my arm that delivered the shot 27 hours after they put it in place. So not only was I getting the shot in the recommended time frame, but we didn’t have to make a long trip back to the medical center. 

Which means Michael got to work two full five day weeks, for the first time since April. 

All in all, it was a much better experience than the first three sessions. I’m so glad we switched doctors. 

I go back on Halloween day for the beginning of the next three day session. We’ll be going in that Thursday, Friday, and Saturday. Sometime after that I’ll have another CT scan, and we’ll find out if this set of chemo drugs is working. 

If it is, I’ll have another session. Or maybe two, since I did have that extra two weeks off. If not, the doctor knows what drug cocktail he’ll be trying next. 

So, that’s where we are. Thanks again, everyone, for all your support. I love you all!