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!
Your mention of lovely bitter foods has me craving marmite on toast. Again. For the third time today.
Good thing that you are doing due diligence concerning that antibiotic. I have heard of the terrible side effects which some of them have. In my inexpert opinion you did the right thing by changing doctors. Sending you love and best wishes for a productive meeting with your new doc.
So sorry you have this to deal with. I understand to well how hard this is. I hope things go well.
Oh Robin,
It’s been such a tough go for you & Michael. You are always in my & Karen’s good thoughts & well wishes.
We love you.
Sending health, love, & positive thoughts your way.
Love Lauren
You are going though so much right now, and it is terribly frightening. I hope the new doctor can find out how to treat this invader, without killing you with the cure! Please keep us in the loop as much as you can. I know all of your friends want to help you fight this, if only with our good wishes and love.
This. SUCKS. HARD.
❤️
Sending much love and healing/support energy to you both. Big hugs and Blessed Be always,
Gwen
Definitely atypical of the breed. 2 arising independently? Possible. Regardless, getting a fresh set of eyes on the puzzle can only help. And when you’re betting your life on someone’s skills, to have them ignore not one but two big red flags on an antibiotic is a Definite Problem. Glad you went elsewhere; grateful you have many good choices available to you. Carrying you in my heart to the Family fall gathering in the Northeast.
Never feel bad about changing doctors or hurting their feelings. They may have the same degrees and credentials, but they are not the same with treating people. You and Mike are the best advocates for each other.
Dear One, I am so sorry to hear this. But I am glad you guys followed your guts. As someone who works in the system (I’m a hospital chaplain) I know that you are doing the right thing. It is my hope that you encounter the exactly right people and resources you need going forward. Blessings, blessings, blessings.