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.

So.

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

Hi!

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

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!

Yay!

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!

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!

But.

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!

Robin