21 January 2016 | Port Annapolis Marina, Annapolis, MD
Unfortunately the picture above is from our first year cruising to the Bahamas in 2013. The best I can do for interesting photos right now is to wait until this weekend for the massive snowstorm they are predicting for those of us unlucky enough to not be in the islands. There aren’t many chances to get a blog worthy picture when all you do is sit at home or go to doctors’ appointments and hospitals! That is where we are at now.
Since our last blog a lot has changed on the health front, and not for the better. Bill has been very weak and his breathing has become an issue. He has started on the new treatment and has had two infusions so far but we are seeing signs to indicate it doesn’t seem to be working. He has even had to have two blood transfusions because his blood tests showed very low hemoglobin counts. None of this is good news but some days he is unable to walk from the sofa, where he has taken 24x7 residency, to the bathroom without having to spend 15 minutes trying to breathe again afterwards. That and the coughing has gotten worse, if that was even possible.
So we asked our oncologist again, what can we do about this coughing thing? When pushed it turns out that they usually have something they can try that they just never thought of before. He sent us to see an Interventional Pulmonologist at Hopkins. The tool they have in their arsenal is the bronchoscopy – there is a rigid bronchoscopy and a flexible bronchoscopy. A bronchoscopy is a procedure that allows your doctor to look at your airway through a thin viewing instrument called a bronchoscope. The rigid procedure requires an operating room although there is no actual surgery, the flexible one apparently doesn’t have that requirement but they are both done with general anesthesia. We are experts now – Bill has had three since right before Christmas.
Apparently the cancer in his right lung was causing his airway to get blocked. The first procedure showed the airway was 60% blocked so they “debulked” the tumor (cut it out of his airway) and installed a stent (a small plastic tube designed to hold the airway open). Then they sent Bill to the recovery room and left him in the capable nurses’ hands. Unfortunately it didn’t go too well. Bill coughed violently for over 2 hours. I’m sure everyone there trying to recover was feeling the same way I feel all the time “please make this coughing stop!!”. Finally I had to beg them to call the doctor and give him some kind of drug to make him stop coughing. I don’t know why they didn’t think of it on their own! It worked great! A little codeine, a little strong cough syrup, everyone’s night was instantly better. Then they sent us home and the next day was Christmas Eve. We had planned on having our entire family over for an early dinner, so even though Bill wasn’t really recovered we did it anyhow. It was a rough afternoon. He coughed, and continued to cough through the holiday weekend. By early Monday morning the cough became the inability to catch his breath at all. We finally called the pulmonologist at Hopkins and he said come to the ER at Hopkins, right away. Turns out that the stent they installed six days earlier in his right lung was now in his left lung! That is when they did a quick flexible bronchoscopy and took out the stent! I am sure that probably happened during the violent coughing that first night before we even left the hospital. They wanted to admit us but after 18 hours in the ER bed they still didn’t have a room available so at 4am I told them we wanted to go home. So that is when they discharged us! This was followed by two glorious days of no coughing at all. We don’t continue to be that lucky.
Two weeks later we found Bill getting another rigid bronchoscopy, since his breathing was getting difficult again. This time his airway was 100% blocked. They debulked again and sent him back to the recovery room. Again I had to beg for drugs so he could stop coughing and go home. This time it was Bill that said he wasn’t staying there another minute. They gave him codeine and cough syrup again and let us go home. On the hour trip home Bill said if he had to keep having this procedure then maybe we need to have it in Annapolis so our hour ride would become 5-10 minutes instead. So yesterday we met with a thoracic surgeon in Annapolis that was very nice and helpful but told us he sent cases like Bill’s to Hopkins. He offered a few other things that might help us though. He thinks if Bill gets the fluid that the CT scan shows on his lungs drained it might help and he suggested we see the radiation oncologists in Annapolis. Plus he suggested we meet with palliative care specialists. We met with the radiation oncologist today, who was very nice, but she basically said radiation wouldn’t help Bill’s lungs, and really he should stay with Hopkins if he wants to explore it any further. The palliative care nurse is coming in two weeks so we’ll see how that goes. We are waiting to hear when we can get Bill’s lungs drained.
Our Hopkins oncologist is on vacation now and we have actually let him not have to deal with Bill for over a week now, although he did tell us to email him if we had any concerns. He will be back next week and he will have a long email, and a new CT report waiting for him. There are lots of things we need to discuss. We never made it to the appointment at University of Pennsylvania last month since Bill was too weak to go, but we are making an appointment at Georgetown to see what other options we can explore.
For now we are going to hope that Bill’s breathing stays stable while we wait for the snowstorm to pass and melt away.