Bad news vs. good news.
I get labs done every week. I HATE them. It is like waiting on pins and needles. What will my white blood cells be doing this week? How about my platelets? My bone marrow?
And especially....my tumor markers. My insurance only pays to have them done once a month, so it isn't a weekly worry thing. But, still.
Last week was a lovely surprise. My tumor markers have went down from the high 1400's to the high 600's. This is great news. I was thrilled. I'm not stupid, though. I am practical. I realize that this is only buying me time. How much? I can't say. But, time is time. I will take it. Gladly. With deep thankfulness.
Then, I had labs this week. And my myelos were up. Showing that my immature neuts are high. This makes no sense to you. To me, it says that my bone marrow is going into high drive. This could easily mean that my leukemia is being triggered. I have known for a very long time that if my leukemia returns, I will die. I will have no choice. I can not fight both cancer and leukemia. But...this happened before and it was not leukemia. It can also mean that you have an infection, that your rheumatoid arthritis is flaring, that you are under severe stress. So. A waiting game ensues.
My life seems to be a waiting game in general. Something is always wrong. I am always waiting for results or to see if next week the results are better. Waiting.
I am getting better at gauging things now. I do feel more fatigued (and seriously, who thought that was possible?) than I have before. My breathing is more ragged. My heart skips beats. I feel weaker, in general.
But, as time goes by, I find myself less afraid. Fear is a strange wicket. The beginning of fear is edged with terror. That feeling when I was first diagnosed and I felt like this was it. My life was over. Time to wrap things up. Not make plans.
Then, after I learned to sit with fear, it had less of a hold on me. I would actually forget that I had terminal cancer sometimes. I made plans and just hoped for the best because on some days, I still felt pretty good.
Tomorrow will be a year since my diagnosis. Back then, I was told that if I followed due course, I would be dead in 12-22 months. But, they couldn't tell me what the quality of my life would be and that was my big question. One nurse told me that there was a person with my diagnosis who was still alive after ten years and still functional. She did comment that this was not the norm, but that it was a possibility. That everyone is different.
I went to a support group. I saw people drop out after a few months because they were just too sick to come any more. I met people who had been coming for nine years. It all seemed to depend on how fast one went through the offered drugs. There were four sections. In each section were several drugs to choose from.
I went from section one (pills) to section four (heavy duty chemo) in the past year. I was briefly tricked by section one when the drug offered (Ibrance) worked for five months.
Then it stopped tricking the cancer. I went on to section 2. Didn't work. Section 3. Didn't work. Finally, I got to section 4. I was told that I had to try two other forms of chemo before I could get the really good one: Halaven. Halaven was quite expensive and my insurance company insisted that I try the two other chemo drugs with less of a successful track record first.
I did this and this began my race against time. Would I die before I got to the really good one? WHY did my insurance company, which is quite good, have this sort of power over my life?
The other chemo drugs didn't work. My tumor markers sky rocketed.
I started on Halaven. My tumor markers dropped. It was not only holding off the cancer, it was killing it. I was thrilled.
And then, of course, because nothing can ever go truly well....my labs this week showed...you guessed it.....a problem with my bone marrow. Probably my deepest fear.
And now I am back in limbo.
This is life with cancer. You just live with it. Until you die from it. Maybe there will be a cure sometime. It will not be in my lifetime, but maybe some time. I think the big pharma will try hard to keep this from happening for a very long time since cancer is their cash cow. But, I believe in my heart that it will happen.
Maybe it will emerge from something crazy...like the Halaven that I am taking. It is derived from a Japanese sea sponge. Who would have figured? And who thought to give it a go? Someone did. Maybe someone will think someday that maybe this or that kind of mushroom will cure cancer and....it will.
But, I won't be here to see it. What gives me joy is thinking that maybe my great niece will be here. Or my great great nephew. Or?
For now, I try to live as best as I can. One foot in front of the other.
Waiting.
And especially....my tumor markers. My insurance only pays to have them done once a month, so it isn't a weekly worry thing. But, still.
Last week was a lovely surprise. My tumor markers have went down from the high 1400's to the high 600's. This is great news. I was thrilled. I'm not stupid, though. I am practical. I realize that this is only buying me time. How much? I can't say. But, time is time. I will take it. Gladly. With deep thankfulness.
Then, I had labs this week. And my myelos were up. Showing that my immature neuts are high. This makes no sense to you. To me, it says that my bone marrow is going into high drive. This could easily mean that my leukemia is being triggered. I have known for a very long time that if my leukemia returns, I will die. I will have no choice. I can not fight both cancer and leukemia. But...this happened before and it was not leukemia. It can also mean that you have an infection, that your rheumatoid arthritis is flaring, that you are under severe stress. So. A waiting game ensues.
My life seems to be a waiting game in general. Something is always wrong. I am always waiting for results or to see if next week the results are better. Waiting.
I am getting better at gauging things now. I do feel more fatigued (and seriously, who thought that was possible?) than I have before. My breathing is more ragged. My heart skips beats. I feel weaker, in general.
But, as time goes by, I find myself less afraid. Fear is a strange wicket. The beginning of fear is edged with terror. That feeling when I was first diagnosed and I felt like this was it. My life was over. Time to wrap things up. Not make plans.
Then, after I learned to sit with fear, it had less of a hold on me. I would actually forget that I had terminal cancer sometimes. I made plans and just hoped for the best because on some days, I still felt pretty good.
Tomorrow will be a year since my diagnosis. Back then, I was told that if I followed due course, I would be dead in 12-22 months. But, they couldn't tell me what the quality of my life would be and that was my big question. One nurse told me that there was a person with my diagnosis who was still alive after ten years and still functional. She did comment that this was not the norm, but that it was a possibility. That everyone is different.
I went to a support group. I saw people drop out after a few months because they were just too sick to come any more. I met people who had been coming for nine years. It all seemed to depend on how fast one went through the offered drugs. There were four sections. In each section were several drugs to choose from.
I went from section one (pills) to section four (heavy duty chemo) in the past year. I was briefly tricked by section one when the drug offered (Ibrance) worked for five months.
Then it stopped tricking the cancer. I went on to section 2. Didn't work. Section 3. Didn't work. Finally, I got to section 4. I was told that I had to try two other forms of chemo before I could get the really good one: Halaven. Halaven was quite expensive and my insurance company insisted that I try the two other chemo drugs with less of a successful track record first.
I did this and this began my race against time. Would I die before I got to the really good one? WHY did my insurance company, which is quite good, have this sort of power over my life?
The other chemo drugs didn't work. My tumor markers sky rocketed.
I started on Halaven. My tumor markers dropped. It was not only holding off the cancer, it was killing it. I was thrilled.
And then, of course, because nothing can ever go truly well....my labs this week showed...you guessed it.....a problem with my bone marrow. Probably my deepest fear.
And now I am back in limbo.
This is life with cancer. You just live with it. Until you die from it. Maybe there will be a cure sometime. It will not be in my lifetime, but maybe some time. I think the big pharma will try hard to keep this from happening for a very long time since cancer is their cash cow. But, I believe in my heart that it will happen.
Maybe it will emerge from something crazy...like the Halaven that I am taking. It is derived from a Japanese sea sponge. Who would have figured? And who thought to give it a go? Someone did. Maybe someone will think someday that maybe this or that kind of mushroom will cure cancer and....it will.
But, I won't be here to see it. What gives me joy is thinking that maybe my great niece will be here. Or my great great nephew. Or?
For now, I try to live as best as I can. One foot in front of the other.
Waiting.
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