It's been awhile since I blogged mainly because I just haven't felt like it due to the aftereffects of chemo - I often am not only feeling bad physically but I get into a kind of mental fog and I just don't feel like thinking and stringing together a bunch of thoughts. Plus, there hasn't been much new on the health front lately.
But having said that I'm feeling good today and I do have a bit of news on the health front.
I have switched doctors - long story on why and how that came about that I won't go into here. I now have a doc at Johns Hopkins which is a good thing. I recently saw that Hopkins is rated as the best hospital in America and there cancer center is ranked third best in the nation. So there is a sense of security in this in the sense that I'm probably in the best place I could possibly be for cancer treatment. The two places that are ranked ahead of Hopkins are MD Anderson at the University of Texas and Sloane Kettering in New York. So, since those are out of driving distance it's good to be at Hopkins.
The only down side of Hopkins is that it is internationally known and people come here from all over the world, so the wait times are going to be longer for pretty much everything.
But I went in today and spent a good deal of time with a nurse practitioner and the doctor. The good news is that they gave me some answers to questions I haven't gotten before. I have had 11 treatments so far and they tell me that 12 is the standard so they are going to give me one more and then stop. One of the drugs I have been getting is called oxolyplatin (sp?) and it causes neuropoathy in the fingers and toes and that has become the dominant side effect for me over the last month. I've pretty well lost feeling in the tips of my fingers and the pads of my feet and toes are going numb. I have a hard time buttoning shirts and sometimes I lose balance.
So, come to find out, ten treatments with oxolyplatin is usually about as much as they give so I won't get that with this next treatment. I've also been given some medication which we hope is going to help me with the neuropathy so with that and not get the oxolyplatin hopefully I'll start getting my feeling back.
Now for the news that's not as good. It's not bad news but it's just a reminder of the seriousness of cancer. What we do after this treatment is wait for the tumors to start growing again and then go back on chemo. I'll get a CT scan every 2-3 months and as long as the tumors don't grow I won't have treatment. When they start growing again I'll go back on treatment.
The doctor said I could stay on some form of chemo but that statistically patients who stay on chemo vs. those who take a break and wait for the tumors to grow again don't do any better. So, those who go off the chemo get to enjoy a higher quality of life for a time.
The doctor expects that I will have a few months without treatment, hopefully up to six.
I also asked about my prognosis. The good news is that the doctor says my tumors have "good biology." This is shown by the fact that they have responded very well to treatment. She said that the average life expectancy for this is two to two and a half years which was a downer. My old doctor had said three to three and a half years. But don't forget that this "average" means 50% of people die before then and 50% live longer. She said with my "good biology" in the tumor it is very hopeful that I'll be in the 50% group that lives longer. On the other hand they said that those on the good side usually only live 4-5 years, not 10 or so. That one kind of upset us. She said the goal is to basically keep me alive and going in hopes that new treatments will come available in the future. With Hopkins being a research hospital they will be the first to get the newest and best treatments.
That prognosis is not totally out of the blue, we have heard such things before and so this was just a reminder of the seriousness of the situation I'm in. We have recouped pretty well from that and are just trusting God and using this as a reminder to number our days and make the most of them. So, needless to say I would appreciate your prayers. I do look forward to eternity but for the sake of my family and work I have yet to do I hope to stay here awhile longer.
Having said all of that I am feeling pretty good these days. I had a drug holiday where I recouped a lot of energy. And I have done pretty well since the last treatment two weeks ago. Since this next treatment will be minus the oxolyplatin I expect the side effects won't be too overwhelming and then I can begin my period of no treatment and feeling well. And I expect that will enable me to resume blogging at some regular pace. I doubt I'll ever reach the frequency of blogging that I had in earlier days but hopefully I'll be able to post at least once or twice a week.
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