Let me do my very best attempt to bring you up-to-date with Dan's health.
After the last CT scan, we did in fact proceed with two more platinum chemotherapy infusions (pemetrexed, ruxolitinib, and cisplatin) -rounds 5 & 6. After round 5, he was bed ridden for a week. His taste buds and other fast growing cells continued to struggle at the assault and he lost his tolerance for more food--cheese, garlic & onions, potatoes, for example. I tried not to worry as I woke him periodically for his meds, water or juice, and small bits of food. It was difficult to get him to eat much at all. One night I woke him and he could only manage 4 baby carrots. He lost ten pounds that week. I bought whey protein and added it to smoothies. I tried to get adventurous and add it to any snacks I could--fruit yogurt or spaghetti-but even the unflavored powder bothered him with a distinct taste that only he noticed.
His strength and endurance slipped away as he slept each day. A typically warm blooded guy, he now felt cold constantly and wore blankets and hats day and night. He grew so pale. Raine and I brought colds into the home but luckily Dan only caught very mild versions. However he has had trouble hearing in his left ear from the congestion and it hasn't gone away. We were finally able to get him in for a blood transfusion the day after his 6th infusion (2/21/15). His level dropped to 6.9 and they typically offer transfusions at 7. It was disconcerting to watch him drop that low but I was so relieved to see color return to his face after he was administered two bags of blood. The combination of the additional blood volume and gratification knowing it was his final treatment with cisplatin seemed to give him some extra pep going into his recovery after the 6th round.
The dizzy spells he was having stopped after round 5 and we are encouraged that this could mean that they were more likely related to the blood volume/anemia issue with over-exertion and not his brain lesions. Of course, we always have to scan the brain to check things out and be sure, so an MRI was done February 1st and he is repeating it again today. The findings last month included:
Signs of possible bacterial infection, signs of possible new cancer OR blood clots/bacterial infection, stable tumors with improvement in his left frontal lobe where he had swelling (inflammation) due to the tumor dying/shrinking previously, and signs of softened/destroyed brain tissue.
We will know more about the status of each of these issues this Friday when we discuss the results of today's MRI. At this point, the medical team has agreed that there are no signs of anything unusual given his condition/treatment, so we are just hoping everything has remained stable and that they can explain to us any necessary implications to consider with regards to his brain that hasn't been fully discussed so far.
As a side note, Dan's hair is growing back in and is very fuzzy and light (we have yet to figure out if it is gray or blonde) with some thicker dark patches growing more quickly. ;)
As for Dan's lung. We had an appointment with a thoracic surgeon in February and were disappointed to find out that he can't have the surgery to seal his lung to the chest wall and prevent further fluid accumulation. The best analogy I have heard to describe Dan's lung is that his chest is like a glass bottle, with a balloon inside, and the balloon has a little bit of duct tape spread across the balloon, conforming it to a tight shell. The balloon/lung is awfully small and constricted. Of his 100% lung capacity, the surgeon estimated that Dan is operating with 60% due to that reduced left lung (probably operating at 10% itself).
As far as his lung capacity in day to day life, Dan typically feels well, but certain tasks make him short-of-breath or he would not be able to complete them at all. For example, he would not be able to walk 18 holes of golf or carry Raine up a flight of stairs. The surgeon asked Dan if he thought he could manage 9 holes of golf, to which Dan replied "Sure," so the surgeon gently commented that he should be glad for that. It surprised him that Dan could even walk from the parking garage to the medical office without getting winded. This surgeon (who is all too familiar with lung cancer) examined all of Dan's x-rays and imaging and felt that Dan's stamina and performance was "remarkable" --indicative of his young age and great health. (So let that be a lesson of good exercise and nutrition.)
It was a little difficult to adjust my mind to the status of Dan's limitations as not being limitations that we would have removed (so that he can get back to normal) but permanent. This is my healthy, strong 37 year old husband. I felt like the reality of his illness hit me all over again like a merciless crashing wave. Oh, right, this is cancer and it has damaged him and it will never go away. This is so unfair.
I cried during that appointment; I felt completely unable to let the tears stop.
Now, 4 weeks later, I am focusing on what he is able to do, and how much better that will be when he is further healed from the platinum chemo. We are almost 3 weeks post-infusion and he has been able to go back to work for short days, help play with Raine and put him to bed, and continue to do some chores around the house--all in VERY small doses. (Trust me, I am like a hawk!) He remains slightly anemic but his appetite is good and some of his taste buds are changing back, so he succesfully had pizza and pierogi last week!
We will know more about the status of the cancer on Friday when we discuss his CT scan results. Our hope is that everything has remained stable and he can start maintenance chemotherapy (pemetrexed--standard for advanced NSCLC and research shows good for ALK) on Friday to keep the cancer from growing again/spreading further as long as we can. Dr. Duffy estimates another three weeks and he will start to feel much more like himself again, because the low dose of pemetrexed that will be administered moving forward should have minimal side effects. (Thank goodness!)
I will write a post on Friday to let you know what we find out!
P.S. THANK YOU to everyone who has been volunteering, sending care packages and cards, donating money, and encouraging us. I wish I was able to thank each and every one of you in person! Please know that we value every donation and act of service. You can continue to use our Wish List, GoFundMe, and Lotsa Helping Hands. These have been miracles for us--in addition to the early Spring here in Oregon. :)