Tag: health

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

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.