It’s been 23 days since I had my first Alpharadin infusion and many of you have been asking about how I am doing. Thank you so much for your interest, thoughts and prayers during this time of waiting (again). I owe each of you so much as you have loved me, cared for me and lifted me up to God in prayer in the midst of the horror of this cancer. I have been hesitant to write as I have wanted to be sure, but I am now ready to give you an update:
Yea, yea. Get on with it, Ed. How are you feeling?
This is photo would be a bit of an exaggeration, but even if I can’t DO this right now, it does reflect how I am FEELING.
Amazingly . . . are you ready for this? I am feeling MUCH BETTER! At the end of last week I started to notice a slight diminishment in my pain level. By Friday I was feeling increasingly better. Then last Saturday it was like someone flipped a switch. I love working in our yard, but really haven’t been able to do so for 8 months now (a horrible loss). But last Saturday a friend came over (thanks, Mike!) to do some yard work for us and after he left I went out and worked by myself for 2 hours!
Afterwards, I still had energy to spare so I cleaned up my workbench and garage. To top things off, I cleaned our pool at the end of the day. Walking inside, I was stunned at what I had just done and how I felt on the backside of it. I felt minimal bone pain and experienced energy that I haven’t had in months!!!
Today (a week later), my pain continues to diminish dramatically – I would say there has been a 75% reduction if I had to put a number on it. My energy level has also increased 40-50%, I think. To put this is context, I have moments now when the last 8 months seem like a bad dream and my life now seems somewhat gloriously “normal” again.
Before the Alpharadin, I was taking 3,200MG of Ibuprofen during the day for pain relief (and it wasn’t helping a whole lot). Today I am drug free during the day. I am still on a narcotic at night, but that’s because I am addicted to it and people seem to like me better when I am on it!
I’ve had a hard time bringing myself to believe that I could feel this much better this fast. Is it psychosomatic? Am I imagining this because I’m desperate to feel better? I don’t think so. It has been a week and the only explanation I have is that it’s miraculous – there is no other way to describe what is happening. So thanks be to God for this amazing gift! I don’t know how long it will last, but I am taking it a day at a time, and enjoying the gift of a reprieve from this pain and fatigue. I hope you will join me in my joy!
What is your prognosis with this treatment?
I will get my second infusion a week from tomorrow, and you can bet that I have many questions for my physician. Now that we know the drug is working for me, I want to know:
- while I am told it is not a cure, can I stay on the Alpharadin long-term as a maintenance drug?
- will I eventually grow a second head or something else from the effects of the radiation? (I really don’t think I would care)
- if I can’t stay on the drug, does the cancer just start growing again?
- will my bones start to heal now that the cancer is being knocked back? (Because I still feel pretty wobbly)
- what will people think of me if they were thinking I was about to die and I end up outliving them? (This could be very awkward!)
Are you experiencing any side effects from the radiation?
This is the only thing I have noticed. I’m not sure what to make of it, but when I get up in the middle of the night I no longer have to turn on a light – very convenient!
Right now, it’s a gorgeous day and I am still alive and feeling better than I have in months. My pain is greatly diminished and my energy levels are up. I went for a 3 mile walk this afternoon and still feel wonderful. Tonight, I have an evening with dear friends (some of you!) who have fought so hard with me through all of this and stood by my side every day.
I am grateful – for each of you, for kindness and grace from God, for Alpharadin, and for life!
Sam: “It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why.
But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back only they didn’t. They kept going because they were holding on to something.”
Frodo: “What are we holding on to, Sam?”
Sam: “That there’s some good in this world, Mr. Frodo. And it’s worth fighting for.”
– “The Lord of the Rings – the Two Towers”