Tuesday, April 20, 2010

lfe, this week.

Hi everybody.
I want to let you know that this week when I went to my acupuncturist, he said that it is the first time he has seen me since the Bat Mitzva that I am doing better. I guess I bottomed out almost 2 weeks ago when my chemo fever lasted for 4 days. The good news is that one can consider that a 'healthy immune response.' That means that I had an infection and my body finally burned it out. I am still coughing, but to keep it clean, the stuff that comes up is no longer colorful. I feel the difference in my lungs, it is lighter. I can now feel the cancer in there, which is a bit weird, but also comforting that I can feel the difference. Now as the cancer lightens up again, I will be able to feel the difference. When there is alot going on, it is hard to differentiate.

With doing better, my energy is coming back a bit. I have to be really careful to not over do it and to not underdo it too. I need to use my energy to get stronger, but pace myself so that I do not go into overdrive. I think my practice in knowing the difference between adrenaline energy and regular energy will help with this. There is still a learning curve there.

The meals and the other help has been great. I have some more errandy things that I will ask for help with soon. I am still up for juicers to visit and make me juice. I do not have chemo this week. yippie!

love love

Saturday, April 10, 2010

Tumor marker story

So. My tumor marker was not as bad as I thought it could be. For the Bat Mitzva, I took off a week of chemo and wiped my self out as well. That took my marker up to 100 (from the 62-72 that it was hanging out at). Normal is 36 and below. It has not been there for a very long time. It got back down to 62-72 since I had pneumonia. During pneumonia I think it was up near 156 or something. This week it was down to 98. So I am slowly stabilizing and maybe even going back down again.

This is taking a lot of work on the part of our whole family. I am not moving very much these days. Today is a dear friend's Bat Mitzva and I am missing it right now. This Wed was my first week of a new round of chemo. Two weeks on, one week off = one round. It is Sat now and I still have not shaken the fever. That tells me that my body is still pretty weak. The good news is that I tolerated the chemo better this time than the round that started right after Merav's Bat Mitzva. So... despite feeling yucky, I am doing better than I was.

I just put out a request for some help on the lotsahelpinghands.com website. If you want to be on it and are not, let us know.

love love

Tuesday, April 06, 2010

life, post Bat Mitzva

Hi folks. So, the Bat Mitzva is over, we are settling back to normal. I danced and danced and danced. I waaaay over did it and had lots of fun doing that. The whole event was amazing and everyone was amazing.

I have been totally wiped out since everyone left. I spent 4 days horizontal after chemo on Wed. Being wiped out at the beginning of the chemo round meant that my body was more sensitive to the side effects and it was not pretty. The whole nausea thing for me is worse than the fever thing, but I got both.

About a week later, I started moving about and I am still recovering. It is going to be a long slow rebuilding of energy and strength as it goes when you use up all of your energy resources. I am glad I did it, even still.

In some ways, I feel like I am recovering faster than expected, because I am really really taking care of myself and starting to feel better. In other ways, I feel like it is going to take a long time to get back up to where I was. Part of the issue is that the energy I expelled over the Bat Mitzva week was above what I usually have and getting back to that level of energy on a daily basis will probably not happen.

I have had a bit of a pity party about it all. I want to go on the family bike rides. I want to grocery shop, and even bike there with the trailer. I want to pull weeds and get the garden going again. I want to have energy to get another dog because I miss being a dog owner and it has not even been a whole month since Joe died. I want to plan a summer in which I have energy to do fun activities with my kids. I want to have energy to go to the snow even if it is just to inner tube down a hill once. I want to get involved with the food movement and make a difference making local organic food happen.

Things that I thought I said goodbye to already, I have to do it again and again. It gets me feeling jealous and angry.

I suppose all of this is a natural anti-climax from the work that it took to pull off the Bat Mitzva. But that does not make it any less real.

I am feeling like I need so much help, but find it hard to ask for it, even when people are offering. At this point we do need help. I am tired and Andy is spent. We cant seem to take care of enough. I am working on summer plans for the kids. If anyone reading this wants help with their little one over the summer, Merav wants to do Ravi camp again and has a more flexible schedule. She is really interested in cooking at this point and wants to do baking too. Both kids are going to kayak, that will be fun. It will be a quieter summer than what they had back when they were camped up all summer long. I think that is a good thing.

If you can help with shopping or cooking or stupid errand running, let me know. I need to figure out how to organize it because so much is not able to plan ahead of time. I will try to use the www.lotsahelpinghands.com or .org again. If you are not on it and want to be on it, let us know.

I will know more about my health statistics in a couple of days. I am starting another round of chemo tomorrow and will have my numbers soon. I do not know what to expect.

Love to you all.