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Archive for December, 2007

Med Onc opinion

Today A. and I went to see the med onc at Fox Chase. I guess he’s my med onc now since my med onc at Jefferson left for Tennessee a while back. We got in and out of there pretty quickly as there was hardly anyone there today. So he thinks the Megace (hormonal therapy) might be a good way to go for now, but wants me to pursue some other radiation opinions and get the results from the ct-scan before deciding for sure. He recommended I see the rad onc at FCCC that does stereotactic radiotherapy to see if that would be a possibility. He referred me to him but I have to wait for his office to call me with an appt. He also talked about seeing someone at Penn who does gamma knife but from what I have read gamma knife is only for brain/head tumors but in researching this there is a rad onc at Pennsy who looks like might be a good md for another opinion. Anyway, the med onc was saying that if this tumor has increased in activity it’s probably a good time to do something rather than continuing the wait and see approach. However he wants to balance toxicity and quality of life with how effective a treatment may be. Hormones are less toxic than chemo but are not benign either. He also seems concerned with using therapies now that I might need later on, he talked about that the last time I saw him in February too. So, the plan for now is to see if there’s some kind of radiation therapy that could get this bit of tumor out, and then go back to see him on 1/23 and decided what to do next (assuming I can get the rad opinions before then). Also, he gave me a script for an MRI of my lower back to see what is going on with my back pain. He said maybe there is something going on that has nothing to do with the cancer that can be treated by another type of dr. (like an orthopaedist for example). So, gotta fit that in somewhere too.

He told me that I had the littlest bit of cancer that one could have and still have cancer. I thought that was a good way to explain it to Z. We hadn’t said anything specific to her about all this yet since there wasn’t anything definitive to tell her. So this evening I talked to her about it. I told her that a little bit of cancer was still there and what the drs. said above, and that I’d be having various drs. appts. and tests to find out what we might want to do about it. This afternoon she had a playdate with her friend R. while we were at the drs. so when I told her about the appts. and tests she said “does that mean I get to have more playdates with R.?” and also told me that they really wanted to have a sleepover. Her play therapist (we recently began taking her for play therapy to help her deal with all the stuff going on in her life) has been very concerned with my not having told her about all this yet, but I’d been trying to explain to her that our family lives with this stuff all the time, it’s not like now is something so different than normal. We really just get on with our lives after a couple of days of digestion. Z.’s reaction was not unexpected, she’s lived with my health issues for so long that she really doesn’t get shocked or upset about the various specifics. It’s more like it’s a general effect that she has all the time because of it.

So A.’s taking the next couple of days of work and we’d like to do some fun things together, not sure what yet. Maybe the art museum, the movies (although Z. wants to see the Chipmunk movie and A. and I don’t think we can bear to sit through it!), or maybe we can actually set up the Wii we got as a family present this year for Xmas!

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Gyn onc opinion

A. and I went to see my gyn onc today. He was pretty good today, more like his old self. Probably helps that he had a resident or whatever with him. Anyway, he was not feeling really sure about the PET/CT results and wants me to have a CT scan to determine the size of the tumor. He says that the metabolic activity that the PET read could be for various reasons and that the CT part is not a good indicator of size (I need the type that is by itself and with the dye). So I have made an appt. for Jan. 10th for a CT and he put an attention on the script for the radiologist who did my ct-guided biopsy to read it too. Then I go back to see him on the 14th to see what he thinks. His feeling is that it’s likely too dangerous to remove and if it’s small and stable not worth killing me to get it out (or something to that effect).

We also talked about Megace, he said I can go on that at any time if I want. As he put it, there is “some hormone receptivity” in the original cancer. From what I have read it’s definitely an iffy thing as to whether it will do anything or not. I will talk to my med onc. next Wed. and get his opinion also. It’s certainly a lot less toxic than chemo, but not without it’s problems. One being weight gain, which I know people think is the least of my problems right now, but it’s a big issue for me. After my 1st cancer back when Z. was a baby I gained a lot of weight (from treatment and afterwards) and started to get high blood pressure and my blood sugars levels were going up (big family history of diabetes). I went on the Zone diet and lost 60 pounds which I kept off for a few years. Since the endo cancer diagnosis in 2004 I have gained 50 pounds. My blood pressure is going up (it was sky high in the drs. office today, although my daily readings at home are much better usually), so far my blood sugars levels are okay but that could change easily. So gaining more weight is a big health issue for me. They use Megace to help people who don’t have an appetite, I have heard of weight increases from 10 to 80 pounds from women that I know who have used it for cancer treatment.

We did find out more about this tumor and it’s location. I feel like every time I go to the drs. I find out more, I’m not quite sure why I never got all this info at the beginning (or maybe I just never heard it, who knows). Anyway, the tumor is in something called a retrocaval lymph node near some muscle (we both heard something like solus but when I google it I can only find soleus which is in the leg). But whatever he meant, he said the tumor was right up against this muscle. So no wonder my back hurts!

I never remember to ask for scripts but luckily A. remembered so I walked out with scripts for a muscle relaxant and something to help me sleep when I need it. We did leave feeling a little better, not really sure why. Maybe because the gyn onc didn’t really seem all that concerned about the report, although as I said to A. you have to realize that he’s coming from the point of view that while he’s trying to keep me alive, he’s not necessarily expecting the cancer to go away either.

So, I think we can relax a little and enjoy Xmas before the next drs. appt. on Wednesday. And if for some reason I can’t, well I have some pharmaceuticals now that will help me to!

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Painting

I’ve been taking an oil painting class once a week for the last month or so and have really been enjoying it. I went to art school and did a lot of painting for a few years (I was initially going to major in painting but eventually changed to photography) but I haven’t done very much oil painting over the years since then. I am learning things about painting I never learned in art school in the 70’s. Like I had never done an underpainting before or worked quite so methodically. Here is my underpainting:

This week (my 5th class) I began painting with color (no pix of that and the painting is in the studio of the painter who is teaching the class). It’s been a very slow process, but I’ve enjoyed the slow pace. We have a couple weeks off for the holiday break and my hope is that I will be able to continue going each week. It depends on what treatment I end up doing. I see one of my doctors tomorrow and another one next Wed. and will see what they recommend. Then A. and I will decide who and where to go for 2nd opinions.

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I made this last weekend for gifts for Z.’s teachers (all 8 of them plus the Lower school admin asst.). I made 4 batches, two mild (the redder ones to the right) and two spicy (the slightly browner ones to the left) and had a bit left over for us, yum! Z. likes the mild version, which has barely any heat and the spicy version is just a little hot (doesn’t burn your mouth off, but has a nice zing). So depending on how hot your chile powder is (that is PURE chile powder made only from chile peppers, not chili powder blend which has things like cumin and oregano in it) will determine how much you will want to use (I used 2 tablespoons of mild chile for mild and 1 tablespoon of a hotter chile for the spicy- I tasted each chile powder before deciding how much to use).

I read at least a dozen or so microwave peanut brittle recipes before deciding on (and changing slightly) this one from allrecipes.com. Using the microwave makes this pretty easy, but be careful (no kid helpers!) as it gets VERY, VERY HOT! I used a silicone mitt to hold the handle on my 2 quart glass measuring cup/bowl. It’s a little like a science experiment at the end when you add the baking soda.

The stuff is addicting! I had bought some Senor Murphy’s red chile peanut brittle last summer when we were in Santa Fe and loved it. This is just as good. No, actually it’s better!

You can vary the kind of nuts or even use sunflower or pumpkin seeds. This recipe calls for salted peanuts, if you use unsalted nuts add about an 1/8 tsp. of salt to the sugar and corn syrup.

And of course you can leave out the chile powder, but what fun is that?

Microwave Peanut Brittle (red chile adaption)
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Recipe By: Allrecipes.com-Adapted by Michele T.
Serving Size: 35

Ingredients:

1 cup white sugar
1/2 cup light corn syrup
1 cup salted peanuts
1 teaspoon butter, (Michele’s note: I used 1 tablespoon unsalted butter)
1 teaspoon vanilla extract
1 teaspoon baking soda
1 to 2 tablespoon PURE red chile powder, (not chili powder!) optional

Directions:

1. Butter a cookie sheet. Combine sugar and corn syrup in a 2 quart glass bowl and microwave on high 4 minutes. Stir in peanuts and microwave on high 3 1/2 minutes more, then stir in butter and vanilla and microwave for 1 1/2 minutes.

2. Stir in baking soda until light and foamy. Pour onto cookie sheet and spread thin. Cool completely and break into pieces and serve.

Notes:

Michele’s note- I added 2 tablespoons mild Chimayo red chile for a mild red chile version. In another version I used 1 tablespoon of a hotter New Mexico Molida red chile for a spicier version. I also used 1 tablespoon of unsalted butter and Planters cocktail peanuts.

Also, preheat the cookie sheets in a 200°F oven until you are ready to pour. It makes it easier to make it thinner. As soon as you put the baking soda in, stir and pour immediately, then tip the cookie sheet a bit, I also rapped it on the wood counter a bit to get it to spread out a bit more. I used non-stick baking sheets so used a smidge of non-stick spray and wiped it on. You can also use parchment paper or a Silpat mat but I haven’t tried either myself. I spray my bowls and utensils with non-stick spray (I found a silicone spatula works best for stirring and getting it out of the bowl quickly).

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This last week

It’s been a hard week. We’re trying to figure out what to do next. Which drs. to see here locally. Which drs. to see in other places. When to do what, in what order. It’s a lot of thinking and researching and decisions. Meanwhile life goes on. The last week I’ve had aquatic therapy, acupuncture, Open Studio, my oil painting class, my support group, Z’s play therapy, Z’s piano lessons, Xmas shopping, picked up my PET/CT scan cd’s, had a belated bday lunch with a friend, Hanukkah, Xmas our of town with my family over the weekend, etc. etc. and the coming week is even more hectic. I’ve barely had time to think, yet all I do is think. I need to make phone calls but am barely home to make them especially the kinds of calls that require call backs. I can’t give out my cell because I might be with Z. and I am not talking to drs. and hospitals around her. We haven’t said anything to her because really, what is there to tell her, that things are up in the air? Better to wait till there’s something concrete to tell her.

Thanks to everyone for your emails. I’m trying to respond to them all, but it’s taking me some time, so just know that I appreciate the support and love and good thoughts.

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