Month: September 2019

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