Saturday, October 30, 2010

this week was Not a blast

This week, I have spent a day in the emergency because the night before, I passed out walking from the bathroom at night. I do not have a pulmonary embolism, or anything else bad that they checked by doing a CT, Chest X-ray, EKG, and blood work. I have Orthostatic Hypotension. We have nicknamed it standy uppy, fally downy-itis. When I stand up, my blood pressure drops signifigantly. So far, I have passed out 2 times and gotten a wicked headache. I am on all sorts of herbs for it, and they are helping slowly.
For my lungs, I am on a steroid inhaler, and that is helping too. So I am slowly recovering. But boy is it boring. Andy wants me to say that he has not noticed me getting better. I think yesterday I was doing better till I waaay over did it. I made Ze'ev's Halloween costume and went to a shindig at his school. I was out and about all day till 4 and then crashed big time. Unfortunately, we had tickets to a show that I missed.
Eating has been hard and I have lost some weight, so I am working on getting soups and stews in me.
I am now done with my 3 week acupuncture experiment and plan on getting my bloods checked at the beginning of next week.
love to you all.

Tuesday, October 26, 2010

Meee and my luuuungs (sing to Me and my Shadow)

so... I have been having some trouble breathing. It started two weeks ago right after chemo. It is not a standard side effect, so who knows... Anyway. I have been doing the acupuncture 3 times a week for the last two weeks and energy work the other two days. That has been holding the breathing problem at bay and working significantly on my liver, in a good way. By Friday, I was doing better. Sat, I took it easy, But Sunday was the Makers Fair. I took it easy, but still did the whole day. We had a booth there for sunflower seed oil and oil production. It was really fun, but wiped me out. By 7 when we got home, I was fried. My upper body tensed up and my breathing was worse. Mond. We went to see my oncologist. He said "I eyeball good". Quite the complement from him, but means that I do not look like I am really in bad shape. As many of you have said, I look good... go figure. My oxygen levels in my blood were better than his! (We were testing to make sure the machine was on, so he tested himself tool :-)) He did not hear anything in my lungs that sounded like cancer and I can breathe deeply, just very slowly. The decision is that my asthma has kicked in again. For folks that have not known me since childhood, I got asthma in 4th grade and got it to calm down by college.
So. all of my inhalers, that I tried before going to the doc, were all expired by years. I got new ones yesterday, both regular and steroid. I am breathing much better now....but... Starting last night, every time I stand up, I start to pass out. It has happened to me before, mostly in the middle of the night going to the bathroom, but not like this. So I am taking it super easy and not getting up unless I really need to. I am going to be asking for more help on driving needs these days, including getting me places. I do not know how long this is going to last. Hopefully, only a couple of days.
Life is very interesting. It really has lots of unusual twists and turns. Hope yours is going well.
love love

Tuesday, October 12, 2010

For the folks who want to be in the know!

So. It has not been all quiet on this western front. I had a spike in my tumor marker. My CT scan came back with the lung shrunk, which I did not expect because I have not been breathing great, and the liver grown. The liver can lose around 80% of function before being symptomatic and I am still at around 10-15%.

My oncologist wanted to change chemo's has willingly postponed it. Someone, bless her, has brought it to my attention that I have been struggling around the times of the spring and fall equinoxes. It turns out that in Chinese medicine each organ has a time of year that the energy is stronger. This goes for time of day as well. So, the fall equinox is during the time of the lung and the spring is in time of the liver. All very fascinating. The data does not process precisely as I wish it would. However, 5 of the 8 peaks in my tumor marker are around the equinoxes. 2 of the equinoxes do not have data around them.... So there is a chance that: The chemos themselves did not stop working entirely, but my tumor marker went up, so we got a ct and changed chemo before we could see if it went back down. There is one chemo that it is blatantly not the case. But the others, maybe....

With this information, I am working to take care of my liver, as it is more consistently a problem than my lungs, it seems. I am going to work intensively with my Chinese doc's (yes, I have two of them working together for me) for three weeks. I will go to them 3 days on then 4 days off. They are hoping to change the direction of the cancer without me changing chemos. I want to make sure I get the most out of the chemos so that I do not run out of chemotherapy options. This will start next week, but because of this, I am going to change my chemo schedule and go on Fridays starting tomorrow. That is going to mess with my weekends, but it is just for a short time. Ironically, those weekends are the Underground Market (where Andy is selling his oil), the Synagogue retreat ( I am going with the kids....), and I think the Maker's Fair where Andy has a booth for showing how to make oil and perhaps selling oil presses. I will take it easy, but also hope to support Andy through all of this. Yes, life is crazy and I will take care of myself, I promise. I am actually getting much better at it. I hope you are too.

Since I wrote that last bit, I have changed the timing of my chemo. I am going on Mondays for the next couple of weeks. So that was yesterday. I started the new acupuncture regime today. To early to say anything. The Underground Market was really fun and we sold a bunch of the oil. We learned how to work smarter, not harder, by the end of the evening. So next time we will not be as frantic.

I will try to be more communicative but I feel like my life is a roller coaster and I know you all want to be on it with me, but it does not feel right to constantly jerk your collective chains. You know that I am sick. You know that my health fluctuates and that I am very very slowly getting worse, but there are times that I get better too. At least I am getting worse slowly. That is as good as it gets for me. In the mean time, I manage to have fun and get on with a bit of life.

love love