Timing is everything as all of you know. Today we fully expected to say no more treatment, we will just see how it goes for awhile, possible hospice, whatever...instead we are ending the day feeling much more positive about the short term future than we did when the day started.
Recently the FDA approved two new drugs, both in pill form, one for Sam's exact type of non-small cell lung cancer with a specific bio-marker (EGFR) and the other a blood thinner, which means no more injections in the belly! Because they are so new, the VA needs to order them so it might be next week before Sam gets started on the Gilotrif for the cancer and Xarelto for the blood clots. We go back to both doctors in a month to see how things are going. Hopefully no more excitement like this past week.
Speaking of which, Dr. Davis from the VA kindly explained to Sam what happened with the pulmonary blood clot, and is still happening until it completely dissipates. Just to give you an idea of Sam's thought process now, this is the 4th time (minimum) someone has taken the time to explain this to him. Dr. Davis' description, though, I think finally got through to him. Basically, the blood clot in his right lung is at a major intersection and is spanning out in 5 different directions (just like fingers) all at once. Sam responded with a "so I almost died" statement and the doctor nodded his head. When we left, Sam continued to talk about how serious the situation not only was, but still is. The blood thinner is mostly to prevent new blood clots from forming but also to (hopefully) help slowly dissolve the current ones which, as I have previously noted, could take a long while. We also discussed Sam's oxygen level, especially since when we left home it was at 78%. Any movement on his part causes massive pain and decreases his oxygen level. The two go hand in hand. Therefore, the need to be on oxygen 24/7. I just have to find a way to keep him from tugging the oxygen tubes off during the night. This morning I suggested duct tape (it's the Alaskan way, don't you know?) but he did not seem to find that very funny like I did. What is up with that? Anyway, he is learning to adjust the oxygen according to whatever it is he is doing which is a continual work in progress. Two things he will have for the rest of his life, oxygen and blood thinners.
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Had about an hour between appointments so enjoyed some
and fresh air at Valley of the Moon park today. |
At the oncologist's office, we discussed many things. First, Sam's pain level. If he is sitting completely still, the pain is between a 5-6 in his hips/pelvis area. Any movement, it shoots right up to a 10. The meds help bring it down to a dull numbness for a few minutes. The challenge is that the meds also make Sam very spacey. We did discuss why hip replacement is not an option for Sam in that it would create more problems than he already has since there is nothing to attach it to as the pelvis is quite fragile itself from the cancer. It is like there are lots of tiny little fractures throughout the bone and any additional stress would not be good. The new cancer drug just approved by the FDA in the past week or so, Gilotrif, is meant to slow down the progress of the cancer, and help give Sam a better quality of life for the remainder of his life. Unfortunately, as the doctor kindly reminded us several times, right now, there is no cure. The most we can hope for is managing the growth.
Many of you (ourselves included at times out of pure frustration) want to know how much longer do the doctors expect Sam to live. Well, it is nearly impossible to even guess. As of right now, Sam has lived almost 4 years longer than anyone anticipated when he was initially diagnosed with what we later found out was lung cancer. Hearing the news today that there are 2 new non-chemo drugs on the market available for him to try raised our spirits enormously. At the same time, we are dealing with the "new" normal, and that is his inability to walk and need for constant assistance. As each day goes by, this is becoming easier for me to deal with. I told one of my colleagues at work this morning that generally it takes me about 3 days to digest whatever is happening, and then I am able to wrap my mind completely around it, accept it, figure out how to deal with it and move on.
Daily, I admit, I wonder when hospice will happen. Not if, but when. For now, though, we are entering another new chapter on this cancer rollercoaster. Not very fun or exciting, if you ask me. I am just so grateful Sam is still here with me. Last week I was scared to pieces that he might not even get to come home. I cannot thank all of you enough for everything everyone has done, and is doing, to make this transition easier for us. You are our angels, that is for sure. All the prayers, thoughts, notes, emails, cards, calls, texts, everything made such a huge difference. Thank you from the bottom of our hearts.
In the next couple days, VA will be assessing Sam's needs here at home to figure out how best to help him. That will be the next step in this process.
Hugs to everyone and thank you again.
q'ua