A Bronchoscopy and a Very Long Nap

Yesterday I went for my bronchoscopy and everything went smoothly. There are risks like the possibility of deflating a lung or a chance of severe bleeding. I'd stopped taking my blood thinner medication a couple days prior though, and we had no complications.

In the past when I've gone for a bronch, I've been allowed to have a person with me in pre-op, but that wasn't the case this time. I was happy to see COVID precautions being taken though. Things kicked off with my nurse insisting I give a urine sample for a pregnancy test, despite the fact that I have been tested and have been post-menopausal since my first stem cell transplant. That did not sway her and I got tested anyway. Imagine my passive aggressiveness when she reported the test was negative. ("Of course it was." -me)

Only the finest in hospital fashion

Then we really got underway. I had to have an IV for anesthesia, so they got one started and hooked me up to fluids. I did have a vein blow in the process and am currently developing a multicolored bruise on my wrist, but I'm a hard stick so no hard feelings about that. I needed to use a nebulizer to help numb my throat and lungs, which took 20 or so minutes to complete.

There's no cute way to use a nebulizer

Then it was time to head to the OR. I've done this multiple times now and seeing the operating room wasn't anything new. I moved over to the operating table and the team finished setting up. Once they were ready it was time for the anesthesia. I got two different drugs pushed twice, then they gave me IV Benadryl. If you've never had Benadryl pushed into your blood stream, it is a bizarre experience. You are, almost immediately, unable to stay awake. And I don't remember anything else until I woke up in recovery.

My doctor spoke to Alan about the procedure (per my request because I'm useless after anesthesia). The doctor said he didn't see any lesions like he had seen during my last bronchoscopy, but that he did biopsy from several areas. He also did the lavage, where they spray fluid into my lung and take it back out to be tested. Some of the tests can take weeks for results to come back. We don't know any results yet at all.

Afterwards Alan drove me home and I stumbled straight up to bed. I slept all and and most of the night, getting up around 10:30p to feed myself but going back to bed around 2:30a. I slept all night and didn't fully wake up until around noon today. That anesthesia and Benadryl really knocked me out! I still have a bit of a rattle when I breathe sometimes, which makes me cough, bu that should wear off in a day or two and I'll be fully back to normal. Overall a pretty painless procedure!

What Comes Next

On May 4-5, I had my last Bendeka/Adcetris treatment. We had a PET scan on June 1st to figure out if the treatment had worked or not. We were hoping the scan would show no cancer. If that was the case, we hoped I would get 1-2 years cancer free before we had to consider more treatment. The Bendeka/Adcetris was never going to be a permanent solution, but we'd hoped it would be a temporary one and that my body would get some time to recover.

Sadly, that's not the case. The news isn't ALL bad, but it's not good news either. The cancer outside my lungs does appear to have cleared up entirely. No cancer in any of the places that Hodgkin's traditionally grows, like in my lymph nodes. Unfortunately, my lungs are a different story. A couple of the places that have been showing up on my scans are still showing up and one or two new places are showing up now too. They're small relative to my worst scan, but they're there. And the places that have been there all along have increased in SUV (intensity) too.

Dr. Essell, my oncologist, on a huge mural that greets us as we get off the elevator.

Before we rush into what will be a risky new treatment for me, we're going to do a bronchoscopy and biopsy a piece of my lung from one of the affected areas. If that biopsy shows Hodgkins (and we expect it will) then we'll move on to the risky new treatment. I'll need a clear COVID-19 test before the bronchoscopy, and I've already gone for that. We haven't gotten the results yet, but I expect it will be negative and the procedure will happen as planned late this week.

A bronchoscopy involves a pulmonologist snaking a tube down into my lung. The tube has a camera so he can look around. The tube will also (1) spray fluid into my lung then recollect the fluid for lab samples and (2) allow the doctor to take a lung biopsy. For those of you following along, you might remember that a lung biopsy from a bronchoscopy is how we initially rediagnosed my cancer this time around.

We assume that will again show the Hodgkin's lymphoma is in my lungs. We're out of any decent chemo options, so we're looking at immunotherapy now. Immunotherapy is a really exciting option for folks who have not had an allogeneic stem cell transplant (one using donor cells). If this immunotherapy option existed in 2011-2012, I likely never would have had a second transplant. It is a relatively easy treatment (compared to a transplant) and can send folks into remission for decades.

But I've already had a donor stem cell transplant and that complicates things. Now my immune system actually doesn't match up perfectly with my body. My immune system is a carbon copy of my donor's immune system, and although we matched very closely, that immune system doesn't always recognize my body as belonging to it. That's what causes graft versus host disease (GvH). My donor immune system (the "graft") doesn't recognize my eyes or the lining of my mouth, or occasionally my muscles (the "host") and the immune system attacks them. Thus all the eye drops and other creams, ointments, and issues.

So Immunotherapy stimulates a person's immune system. In my case though, it's stimulating my donor immune system, which already takes issue with my body. We run the risk of it dramatically stimulating my GvH also. If that happens, we'll discontinue the Immunotherapy and throw a bunch of steroids at whatever flares up. But it's risky. If we don't catch the GvH in time, the steroids might not be enough to stop it from attacking my body, possibly fatally.

Beyond the risks of Immunotherapy, we also don't have many options if Immunotherapy fails. It's potential benefits are amazing. Immunotherapy could eliminate my cancer for years... maybe even decades. But if it spikes my GvH out of control OR if it doesn't work for me, we don't have any further treatment options with much promise. We can try clinical trials or we could do more chemos, but neither offer much promise.

For now we're just hoping I can tolerate the Immunotherapy, that it doesn't overstimulate my GvH. and that it works. It would be amazing if it worked and I went into remission for a really long time. So fingers crossed guys. We need this one to work.