Monday, August 31, 2009
Friday, August 28, 2009
Thursday, August 27, 2009
Wednesday, August 26, 2009
Monday, August 24, 2009
Sunday, August 23, 2009
Friday, August 21, 2009
Thursday, August 20, 2009
Sunday, August 16, 2009
Well it is day 12 of my second to last chemo cycle, and I am doing pretty well. I am feeling back to normal. ( this is the part where the bloodwork takes a dive, but I feel the best)
So next time when I am whinging about how lowsy I feel at day 8, remind me about day 12.
Have been having fun with the music lately, in fact moreso than I have in a long time. I guess the music has taken on a new meaning for me.
Although I have recently been lamenting about parts of my body that just are not going to function the same as before, perhaps some are better.
Several people have heard bits and pieces of the new cd and one thing they comment on is how much more clear the vocals are than in any cd in the past. I just tell them that its just the bondage of useless organs like uterus and ovaries that were holding me back. However truthfully I really have a whole new "freedom" when I sing now, I guess a freedom from any sort of pressure.
I believe it seems to have all come together for me recently, so perhaps I see it as the balance for the losses, are the gains elsewhere.
So the cd is at the manufacturer now and they will start work on it on Monday. It should be in my hot little hands by September 1. If anyone who reads this blog would like a copy of the cd "hot off the press", email me at jankenb @ gmail.com (without the spaces) and I will tell you how.
I sent a little sampler (3 songs) out to the radio stations that had played my music in the past, and have already in the first week had 6 airplays.
Am anxiously awaiting "fall out day" day 14, to see just what is going to fall out.
love and peace
jankenb @ gmail.com
Thursday, August 13, 2009
Today is another day and seems to be better.
I have been trying to figure out why this times is so much worse than the last one and it may be for a positive reason.
As I have explained in previous blogs, I receive a shot the day after chemo (neulasta) which is a "colony stimulating factor" which is essentially a growth factor for white blood cells.
When the marrow is healthy and a person recieves neulasta, the response can be significant. The bone marrow, when stimulated, can cause extremely high white blood counts and subsequent pains in areas of cell production...ie bones.
After I finished chemo, I think my bone marrow was a bit worn out and even though I received the neulasta my blood count did not go up very much, and this round of chemo had to be delayed as a result.
My blood work this time around is much better, in fact my white blood count on the weekend was actually very high. The count yesterday was also above normal. So what this means is that
the bone marrow is working hard, and effectively raising the counts. However this is likely why I have not been feeling well, but also a sign that as the neulasta wears off, I will feel better.
The reason neulasta is used is to shorten the time in each cycle that the blood count is low (and thus shorten the time that the risk of infection is high). It is only given with chemo agents that are at a high risk of causing these types of infections. It is not used when a person has a leukemia type of cancer, as the last thing you would want would be to give a growth factor to the bone marrow cells, which are already producing out of control.
There are some concerns that Nuelasta might also cause the growth of other cancers, such as bladder, bone..
It makes me kind of nervous, and I have thought about not taking it, but then....what about infection? Everything is such a balance between risk and possible benefit, and it is never quite as clear, it seems, as in the treatment of cancers.
Music tends to cure many things, and yesterday we had a great practice with Jamie, and somehow "life looks better"
We are going to play at the Bandon Farmers market this Saturday, in old Bandon, across from where Rayjens used to be.
That is, if it does not rain
Love and peace
jankenb @ gmail.com
Wednesday, August 12, 2009
This chemo cycle is somehow worse than the previous ones. I guess I was thrown off last time as it was a breeze......at least that is how I remember it now :)
I have had more generalized pain, more nausea, more fatigued....more easily sort of breath....generally feeling unwell.
I guess then I get more down about it all, it certainly seems to be a cycle, my mood is up and optomistic when I am feeling well. I guess with all the aches and pains, it is hard not to worry about recurrences etc. I wonder if some of the abdominal cramps etc might be due to having had radiation to the area, and now exposing the area to chemo.........or maybe I am just being impatient.
I think of all the things I would like to be doing, if I felt up to it this summer, but I guess it will be one summer I will just write off. I look at all those folks cycling the oregon coast this summer and I am SOOO envious. I am even more envious when I see someone out running.
Perhaps I will chalk this year up to the year that I sacrificed so that I might have many more and just hope that it works out that way.
SO THERE, enough feeling sorry for myself.
I swear my hair is just getting odder and odder.
It does not seem to be how anyone else describes their chemo hair situation. I will try to get a more recent photo to post.
Basically what I have now is a matte of thick white hair. Everyone tells my how "cute" it is.
All of the dark hair that grew when I finished radiation, is now gone and all that remains is this white hair. The best way I can describe it is a thicker version of the white peach fuzz that I had during the first set of chemos.. It is clearly better than not having any hair at all, and perhaps it will stay until the real hair starts to come in, which I would expect perhaps by the end of September. Somehow it seems that focusing on silly things like hair is a good distraction some days..
I think that what happens with my hair is a bit different because my treatment is not really common, ie to have chemo, then radiation, and then chemo.
I think that my open wounds are becoming tolerable, and seem to become more inflammed at times and then they settle down, I think I will just have to learn how to best deal with them.
I recently read an article that suggested the use of moisturizers to the area that was going to radiated BEFORE you started. I guess I am beginning to accept that the body might not be quite the same as it was before all of this, but I just hold out hope that I will be able to run again.
Running has always been such an important part of my life.
Ken recently put to words, how to descibe how these past months have gone for us.
On the bad days, you just wait for the day to end, and on the good days, you look forward to the next day. Right now I am just waiting for September.
Thanks for reading this, sorry to be such a downer.
Love and peace
jankenb @ gmail.com
Sunday, August 9, 2009
So glad to be nearing the end of this. Yesterday was about the worse day of chemo thus far. At least last evening was. Despite all the meds, I just had to try to lie still to stave away the nausea. Then today is the postmortum trying to figure out what i did wrong. What I shouldn't have eaten, what I should have eaten etc.
Today seems better though.
It just seems as though the whole gastro intestinal track, just shuts down, or at least slows down considerably. You eat, you drink, then your abdomen looks like you could be 7 months pregnant, and then you get nausea. Just nowhere for it all to go.
Speaking of food, several have asked for my recipe for my birthday cake. Zucchini cake (which I altered to make more "healthy" To make it into a cake I just used a cake pan and iced it with lemon icing.
- 3 cups shredded zucchini (about 3 medium)
- 4 cups all-purpose flour (I used half whole wheat)
- 1 cup plus 2 tablespoons granulated sugar, divided (I used half Steiva half sugar)
- 1/2 cup chopped walnuts, toasted
- 1/4 cup packed brown sugar
- 5 teaspoons baking powder
- 1 tablespoon grated lemon rind
- 1 1/2 teaspoons ground cinnamon ( I also added 1/8th of a cup of turmeric)
- 1/2 teaspoon salt
- 1/4 teaspoon ground nutmeg
- 1 1/2 cups skim milk
- 6 tablespoons vegetable oil (I used olive oil)
- 2 teaspoons vanilla extract ( I used almond extract)
- 2 large eggs
- Cooking spray
Preheat oven to 350°.
Press zucchini on several layers of paper towels. Cover with additional paper towels; set aside.
Combine flour, 1 cup granulated sugar, walnuts, and next 6 ingredients (walnuts through nutmeg) in a large bowl; make a well in center of mixture. Combine milk, oil, vanilla, and eggs in a bowl; stir with a whisk. Add zucchini; stir. Add to flour mixture; stir just until moist. Divide batter evenly between 2 (8 x 4-inch) loaf pans coated with cooking spray. Sprinkle each with 1 tablespoon granulated sugar. Bake at 350° for 1 hour and 10 minutes or until a wooden pick inserted in center comes out clean. Cool 5 minutes in pans on a wire rack; remove from pans. Cool completely on wire rack.
Saturday, August 8, 2009
Friday, August 7, 2009
Thursday, August 6, 2009
Well day 2 is going well, the IV fluids make this so much easier, as I have a lot of abdominal cramping with everything I eat. (that is new)
Big day for the cd today, it was mastered yesterday, and today and last night I am downloading it. Usually a copy is sent to the artist to CHECK for errors etc, however the only other day the masteror can work on this is tomorrow, there was not time, so I am downloading. There are the official files so are not compressed like most music sent over the internet. Most music you can listen to are mp3s which are compressed and are not quite of the same quality as the actual wav type files which are what are on the actual cd.
For some reason the internet is slow yesterday and today, so it is taking forever. On the last song now. From here I will burn a cd and listen several times and figure whether this is the cd I want to go the the manufacturor. I will email them, and they will send a formal copy of the cd (a special kind of disk). The manufacturer actually presses that cd. which means they make a mold of it and use the mold to mass produce (well in my case I would not call it "mass" production), usually 1500 cds. The previous ones are taking up most of the shelf space in my garage.
The other thing I am doing is proof reading the final booklet. It is mostly finished, except that they cannot finish it complelely until they get the actual song times from the mastering studio.
The mastering studio is where the song gets trimmed at the ends to make for smooth endings.
If all goes well Tracy Grammer, who has been doing the editing and more or less overseeing the cover production, will check everything over and it will get to manufacturer. From there they do a rough run print of the cover and send usp to me to check ( this step takes away another few days from the project and nowadays they will let you OK the colours etc online)
Then once everything is finalized at the manufacturor, there are 10 working days to get it done.
They will send 500 unsealed discs to me, for me to send to the radio station. I have a promotor helping me with this part. The rest I will stack, ......with the rest......in my garage, on the shelves.
that is the story of my cd as it sits today.
Day 2 is usually a pretty good day as far as fatigue, so lots to get done before tomorrow, which is not always a good day for fatigue.
Love and peace
jankenb @ gmail.com