Two weeks ago I traveled to Cleveland for my lung surgery. The surgery went well as expected. I was the first surgery of the day. My mom and I arrived at the hospital at 6 a.m, and I was knocked out by 7 a.m. The surgery took about an hour. The surgeon removed a wedge measuring 6.2x2.2x1.1 cm which was smaller than last year, but the nodule itself was larger measuring 0.9x0.5x0.3 cm. The surgeon was surprised by the minimal amount of scar tissue from last year's surgery. The margins were clean as well. Unsurprisingly, the nodule was Ewing's. This is officially my second recurrence.
I had some nausea coming out of the surgery, and I did throw up once, but other than that I did pretty well in the hospital afterwards. I was discharged the following day. The six hour drive home from the hospital wasn't fun, but we got home after a few breaks.
As for the trial, I did not make enough vaccine to get to the random selection phase, so I'm out. I made 3 vials, so the nodule was alive, but there just weren't enough cells there. I'm obviously very disappointed about this. I spent a lot of time researching, traveling, visiting, and most of all waiting for the trial to start. I could have had the surgery months ago and been halfway through my chemo by now, but I think it has all been worth it. I have another great oncologist working my case, and I won't have regrets about not trying to get on the trial. At least I won't have to worry about flights and hotels for the next 9 months. Also, it was a good thing that the nodule didn't really grow that much over the past year. An important thing to keep in mind is that there was no guarantee that the immunotherapy trial would have cured me anyway. There is no guarantee it will cure more patients than the treatment I will be receiving now. I will be following the study, and I hope it has great results. Maybe it will be FDA approved someday.
Recovery has been similar to last year. It was pretty painful to breath, cough, sneeze, etc for about a week after surgery, but the painkillers helped manage it. Currently, I have pain at the incision sites, and my lung is still swollen. If I breathe in deeply, my right lung feels tight. I've been pushing myself to keep moving, whether it is with short walks or activity around the house.
Today, I had an appointment with a new oncologist that I was set up with at Virginia Commonwealth University. The appointment went well. I really like him. VCU is only 20 minutes away from me and is a very well rated hospital. The plan is to do 6 months of the IT chemotherapy regimen. It will be 5 days every 3 weeks, and it will all be done orally. I'm hoping to begin chemo on Monday, but it may be pushed back another week due to insurance authorizations and having the drug available for me.
I'm both nervous and anxious about my upcoming treatment. I'm looking forward to beginning my chemotherapy, and being one step closer to getting better. With that said, the further I have gotten out from being on chemo, the more I have grown to dread going back on it again. I'm worried about the side effects of the treatment, and being able to adjust to combat them. From what I've seen some people have no problems on this regimen and some people have to go off of it because they can't tolerate it. I did well on the first chemo regimen, but that doesn't mean I'll do well with this one. Well, like everything in this journey, I just have to pray and hope for the best. I'll keep you all updated.
I had some nausea coming out of the surgery, and I did throw up once, but other than that I did pretty well in the hospital afterwards. I was discharged the following day. The six hour drive home from the hospital wasn't fun, but we got home after a few breaks.
As for the trial, I did not make enough vaccine to get to the random selection phase, so I'm out. I made 3 vials, so the nodule was alive, but there just weren't enough cells there. I'm obviously very disappointed about this. I spent a lot of time researching, traveling, visiting, and most of all waiting for the trial to start. I could have had the surgery months ago and been halfway through my chemo by now, but I think it has all been worth it. I have another great oncologist working my case, and I won't have regrets about not trying to get on the trial. At least I won't have to worry about flights and hotels for the next 9 months. Also, it was a good thing that the nodule didn't really grow that much over the past year. An important thing to keep in mind is that there was no guarantee that the immunotherapy trial would have cured me anyway. There is no guarantee it will cure more patients than the treatment I will be receiving now. I will be following the study, and I hope it has great results. Maybe it will be FDA approved someday.
Recovery has been similar to last year. It was pretty painful to breath, cough, sneeze, etc for about a week after surgery, but the painkillers helped manage it. Currently, I have pain at the incision sites, and my lung is still swollen. If I breathe in deeply, my right lung feels tight. I've been pushing myself to keep moving, whether it is with short walks or activity around the house.
Today, I had an appointment with a new oncologist that I was set up with at Virginia Commonwealth University. The appointment went well. I really like him. VCU is only 20 minutes away from me and is a very well rated hospital. The plan is to do 6 months of the IT chemotherapy regimen. It will be 5 days every 3 weeks, and it will all be done orally. I'm hoping to begin chemo on Monday, but it may be pushed back another week due to insurance authorizations and having the drug available for me.
I'm both nervous and anxious about my upcoming treatment. I'm looking forward to beginning my chemotherapy, and being one step closer to getting better. With that said, the further I have gotten out from being on chemo, the more I have grown to dread going back on it again. I'm worried about the side effects of the treatment, and being able to adjust to combat them. From what I've seen some people have no problems on this regimen and some people have to go off of it because they can't tolerate it. I did well on the first chemo regimen, but that doesn't mean I'll do well with this one. Well, like everything in this journey, I just have to pray and hope for the best. I'll keep you all updated.
Hi Mike, so glad your surgery went well and you're recovering. Prayers for your upcoming chemotherapy that you have none to minimal side effects. Continue to stay positive. Best, Jill
ReplyDeleteThanks Jill!
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