This week

Nothing much to report. My hair is growing again. I have some curls in the back. It's so long around my ears that I have to put it behind my ears so it won't stick out. It's frizzy again this time around. I had hoped that would be gone, since I heard so many stories of hair growing in different. "at least you HAVE hair!" True - but I think I am allowed to comment on both positive and negative. Some people apparently don't think so. Maybe those people should stop asking questions if they don't want to hear the answers. ;)

My scalp is itching like crazy ever since the hair returned. I think I have dandruff. I've been using a special shampoo, but it isn't helping. Then last night the shampoo stung the hell out of me! I guess I'd been scratching a lot or something. Ouch! Also, my scalp HURTS. Like when the hair fell out. Especially in the place where the hair meets in the middle to grow all different ways, if that makes sense (I wouldn't know about that spot if I didn't lose my hair).

The color is pure salt and pepper. The pepper part seems to be black or very dark brown, not reddish brown like before. I haven't decided if I will ever color it again. I sort of like it for now.

Yesterday I ran into someone I hadn't seen in so long she didn't know about the cancer. She told me she loved my short hairdo! So I guess it might be looking almost normal now. At any rate, I have quit with the bandannas and hats. I just need to be careful in the sun - I got a burn on my neck the other day.

I am still having phantom pains but little enough that I do believe they are phantom. However, in my own mind I have decided that it's time for testing. I go see the doctor next week and I will be insisting on whatever kinds of tests they do to determine if there is an cancer anywhere in my body - be it scans, blood work, whatever. A question - if I get a PET scan again, will I still need other tests such as mammogram, ultrasound, colonoscopy, etc? Something to ask...at any rate, I don't think I will be able to fully relax until these tests are done.

Offers

if you know someone who has cancer, or any other illness/condition, and you offer to help - please follow through. I can't speak for anyone else, but I've heard the same from others (and we experienced when we had triplets). It's really hard for me to ask for help. It's really hard for me to accept help. If I've told you something you can do to help, and you said you would, I almost 150% surely will NOT remind you. So I'll wonder, and eventually maybe do it myself, and that's exactly when you will say "huh, I told you I would do that".

Damned if I do; damned if I don't.

If you don't really intend to help, just don't offer. It's as simple as that. No harm, no foul.

Other Test Results

I got copies of both my last 2 blood tests today. My creatinine is back down to normal range (this was taken 2 days after the first one). So I'll have to ask how that can be. When I took the 2nd one it had been less than 24 hours since I had advil, so I wouldn't think that would do it.

1st test - 1.74
2nd test - 0.65
("normal" is 0.60 - 1.40, so the 2nd is even on the low end!)


Other items of interest -

my glucose level was normal (102 - high side of normal) the first time, then 106 the second (normal is up to 105).

TSH was 0.07 which is low, which is interesting since I am on Armour thyroid. The low level suggest HYPERthyroid, not hypo, which I am (supposedly). I need to do some more research and talk to the doctor about this one. Normal starts at 0.30, so this is markedly low. When I was diagnosed, they used symptoms rather than test results because the test is flawed, so I am not overly concerned. Also, I still have many of the symptoms. If anything I would think I would need more medicine than less. I had just chalked that up to all this cancer medication.

I had him check my Vitamin D level the second time, since I am on the supplements and you can overdose. it is way on the low end of normal. I will need to dig out my old results to see what it was before I started taking it. Mine is 38 (normal is 30 - 100). Since actual, real, non-quack studies have shown that Vitamin D deficiency is important in breast cancer, I definitely need to follow up on this. It doesn't seem possible that it could be that low when I am taking 5000 per day.

I made another appointment with the nutritional oncologist for a phone consult in a few weeks, so hopefully he can shed some light on this for me.

Not Much Going On

I guess it's a good thing when I don't have anything to write in here. :)

I am about to head out for Herceptin so I only have a minute. I have been on Tamoxifen for a week and no side effects yet. Knock on wood. I am still having headaches and pretty bad insomnia. I had been taking advil for the headaches and it helped, but the doctor called last week and said my creatinine levels were up. He asked if I take advil and said that could cause it. It's an indicator of kidney problems so hopefully cutting out the advil will make it go back to normal. it's been a week without that as well, mostly I am just living with a headache although I did buy some tylenol the other day. I had stopped taking it b/c it can damage the liver. Damned if you do, damned if you don't, right? I have an entire long entry I would like to write on that topic someday. To get a quick preview, just look around at what you eat/wear/breathe/think and tell me what DOESN'T cause damage to your health.

Dr. M said the creatinine level is nothing to do with Herceptin, but I looked it up anyway. The only things I could find on the topic are posts on message boards. it seems that a lot of herceptin patients have it too. Anecdotal evidence I know - maybe they are all overdosing on advil as well.

But it does remind me that I would be perfectly comfortable stopping herceptin now. I had decided to stay on it as long as I'm not having side effects. We'll see what the next few blood tests show.

Tamoxifen

I bought it, I took it. Today. A week later than I was supposed to, but I am now and will see it through.

I was still very conflicted about it. Today at herceptin I told the nurse I was nervous and she took the time to talk me through it and find out what the problem really was (my nurses are really awesome!). Finally it hit me that after all this chemo, radiation, everything else I am worried about a little pill?? How often have I found that the bad things listed really happen to me? I personally know two real life friends who have taken or are still taking it and both of them say they have had no side effects at all (one year and 5 years).

I think I just so want everything to be over that I was digging in my heels. I decided not to do that. I will take it. And I am not going to read anything more about it because that only stresses me out. if I have side effects I will discuss them with my doctor. Either way, I'll soldier on.

Better...

My skin is a lot better. It seemed to happen almost all at once. I got up one morning and it didn't hurt! I can now wear a bra again. I am not supposed to go back in the pool until after my checkup next week. I've been walking and trying to stay active. I do feel better if I stay active but when I'm home it's too easy to not, so I am hoping to find a part-time job at some point, just to keep busy.

That's my update for now.