Wednesday, September 16, 2009

so close but so far

Hello everyone
Well today is decision day. I went to see Dr Cook today, and my blood count (white blood count)(infection fighting cells), were even lower. He has more or less left it up to me whether or not to have a neupogen shot at this time. Ken feels uncomfortable leaving the area where my doctor is, with a blood count that low.  The Neupogen would likely boost the white blood count for a week which would get me over this last period, however not without side effects. 
It certainly seems to me that the concept of risks VS benefits is more relevant in oncology than other areas of medicine.  Each drug has potentially serious side effects, but the alternative is "potentially" worse. 
In fact every aspect of cancer care is a balance, how far can you push the envelope of cancer treatments without creating a serious side effect.  The medications used to boost the bone marrow to produce more cells can cause leukemia. It is not common, but it is certainly a consideration when giving neupogen, or neulasta.  I do not think that the risk of infection is any greater traveling vs staying home, it just would be easier to get treated where your oncologist is.
Dr Cook also reviewed my ct scan results and said that ctscans were limited in their ability to detect these cancer recurrences because they have a tendency to start just as thickened tissue which would be hard to see on a ct scan  (captain bringdown  :) )
I got the ct scan results ( I had only gone over the ct with the radiologist), and there are "thickenings" in the pleura of both lungs, which he felt were scarring. Not sure why I would have scarring of the pleura (pleura is the outer lining of the cavity where the lungs sit, the pleural cavity is the space between the pleura and the lung).
So after my visit with the oncologist yesterday I have asked the radiologist to look at the ct scan I had in Eugene in March and compare (just to make sure that the "thickening" is the same on both).  I will find that out early next week. I guess my concern has been that I have had left chest pain intermittantly for about 4 months now.

I did not finish this blog yesterday, so am now writing on Thursday. Ken has been working away at getting the van ready for this trip, and being the true boy scout he is, has packed rain coats for cycling, rain coats for wearing around town, down filled coats for "in case it gets cold", and mitts and scarves.  I told him he had to pick between coats for cycling in the rain and walking in the rain, there was not room for both.
 One thing we found in cleaning out our camper van is that we created a whole cupboard of free space by illiminating the the things I will not need this trip. 
Blow dryer, shampoo, conditioner, hair spray, bobbie pins, cloth hair elastics, Kotex pads, comb, brushes..........maybe he CAN bring 4 raincoats.

I have not been all that helpful because for some reason all the muscles in my legs and back are very achey. More so than they have been any other time in the treatment. Dr Cook thought it might be because my hematocrit is so low. I am more short of breath than I have been in awhile, so just getting tired doing minimal things. This seems to have happened every time my blood counts have been low, so I assume it is related. It just seems like the end of this is SO CLOSE, but in some ways so far away. My expectations were that I would be feeling perfectly fine now, when in fact I feel worse than I did last week.
My parents are celebrating their 60th wedding anniversary while we are up there, so a bit of a family reunion. I am certainly hoping my blood counts are up by then.
Peace and love
Janet Bates
jankenb @

The blood counts are still quite low today, so I am going to go on antibiotics for awhile, a compromise between getting neupogen and/or staying home.  Ken and I will minimize our contact with a lot of people until the blood counts go up.

1 comment:

  1. have a good trip- do some relaxing and hopefully by the time you have returned things will be looking up. Just being with your family might be the remedy as it will take your mind of what might be happening and thinking the worse, when could be that your body has been under attack for last almost year or so, of course it is struggling to get back to normal.