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Four years now.
Today was my breast MRI. It wasn't fun. They are scanning my chest, obviously. And in order for their scan to come out right I need to hold perfectly still. Unfortunately, my lungs are not down with this plan. They think they need to breathe. And we had fun with veins, again, trying to find a place to put the IV. More and more, I want to go back to the nurse who put the pic line in my one good vein in my elbow and throttle her. I don't think she was thinking much about what the rest of my life with needles and blood would be like.
I think the main part is all the emotion this brings up. The IVs and scans and such aren't so bad, but all the what ifs they bring up are very scary. It's almost as if I have a built in "Hey, time to check in with your worst fears!" appointment along with it.
So.... worst fears stared down. Check. Another year please. And can we please get the thermography thing going? Although I am happier to live through many more MRIs as it means I am alive, it would be great to have an option that doesn't involve radiating the body or injecting me with chemicals or trying not to breathe for an hour. Which reminds me- who's great idea was it to add more radiation to our lives with these new airport scanners? I'm ranting now, but man. I have so far "opted out" and gotten a pat down every time. Please join me. If we refuse to walk through them, the airport security will look for something else. I know they realize they aren't good for you, because employees (pilots and attendants) and children don't have to go through them.
Are the words, "It's probably fine" something you really want applied to you? It is no fun to be on the other side, with sickness in your body, and wonder what caused it. Probably, it's all those "fine" things all added up together.

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3 years of life

It has been three years since I finished chemo.
So many strong emotions happen when I think about it.... oddly they all seem to cancel each other out and leave me very calm, but like the calm before the storm. Can the calm come after the storm?

Ben went to a seminar recently that talked about how many of the abilities of cancer cells are the same as placenta cells, which makes the rate of cancer much higher in placental creatures. I think it is fascinating, and I am glad people are finding all sorts of random ways to learn about cancer. I think it's the only way to eventually figure out how to destroy cancer cells without destroying our bodies.

Sometimes I feel so strong, I truly feel breast cancer is behind me and I couldn't possibly ever get sick again. And sometimes I wonder if I am deluding myself, that it will come back like some insidious weed.... but I always end up knowing that I feel good in the present, and I have no control over the future. It is weird to catch oneself thinking, "Should I have that extra slightly carcinogenic substance(coffee, wine, etc)? Will it somehow affect me? Do I need to wear a mask so I don't breathe that exhaust?" And then to consciously tell oneself, "Stop it. You are doing many things to stay healthy."

I think the daily mental battle is the hardest part of sickness.
And I think about the fact I've lived three more years.
Here's to fighting!

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Pavlov and Bikes

I have thought often of posting. I'll be out somewhere, and I'll think to myself, "I really want to talk about that!" And I have forgotten them all. But here I am now, I have some time, let's see.....

I had my 6 month with my oncologist. I have really gotten into biking. Like biking 10 miles or more in a day all over San Francisco, up and down hills and in and out of traffic.... and I love it. In the past I have biked in the summer, and then fallen off in the winter. This year I did the reverse- I didn't bike much last summer due to my job, and really got into it in November! I have discovered that every time I feel like a grumpy winter sloth, if I go ride my bike I feel amazing. I have developed a pavlovian response, so that now when I feel blue I start to crave it. Which I am not fighting, what a fantastic craving to have!

So back to my oncologist. I am 20 mins late for the appointment because I decided to bike the 5 miles, and I had to keep stopping to figure out which way to go, etc. He couldn't have been more pleased with me. He said that there are new studies indicating that any sort of weight loss, any sort of exercise, help with lowering recurrence of breast cancer. I guess I have a fantastic reason to lose weight! I also love it that the oncology department at Kaiser has figured out that stressing people out about being late to appointments is silly. And, actually, bad for their health.

I have adjusted to my new breasts. I am still surprised by my emotions. That sense of well-being, that everything will be fine, that life is always there, people are always there.... deep down I just don't have it anymore. I miss it. I keep my chin up, remind myself where I am in the moment... but deep down I really feel that temporary-ness of it all.

Holy Cow

I can't believe how the time has sped by.

It is strange, after 15 years of always looking the same, and having people come up to me and say, "were you the girl in New York with the purple ends to your hair? I remember YOU" to now have people say, "Wait, THAT was you?"

It happens all the time now. Today I was talking to a friend, whom I hope will dance with me, and told her I did a dance piece 3 weeks after my last chemo treatment. And she said, "Wait, was your head shaved? THAT was you?"

I've been having a lot of fun with all my new looks. But now I'm starting to wonder.... what do I really want to look like? Apparently my fun is very confusing to my fans (just kidding).

On the health side..... years of hot flashes or years of irregular periods, which is worse?

Had this year's MRI, so far so good! MRI no fun though. Every time I give blood or get an IV, I go through the same process: first they spend a lot of time pushing on my veins. They ask if they really can't use my other arm. They rub/warm my arm and poke in a needle. Nothing happens. They apologize and go for my hand. Fortunately that usually works.

Summer rememberances

Does a fake breast look good in a bathing suit? Yes! That's pretty awesome. I can wear my bikini again.

Had a great summer, got to see lots of friends, go to my High school reunion, and spent a lot of time in water in the sun.

In the middle of it I had my first breast MRI. I am choosing to do MRI's instead of mammograms. I am doing this because of my breast tissue- at my age breast tissue is more dense, and mammograms have a hard time finding lumps in dense breast tissue. For example, when I had a lump that the doctors could feel with their fingers, it still didn't show up on the mammogram even though they knew where to look. And the second smaller lump that we found after the mastectomy didn't show up either.

Mammograms are radiation. Radiation causes cancer. The thought is that their diagnostic capabilities outweigh their risks. I feel that since they can't find a darn thing on me right now, this is not the case for me. And I feel that a decade of useless radiation (the standard of care is for me to go in for a mammogram every 6 months) is something my chest doesn't need.

I discussed all this with my surgeon, who said I could do MRI's instead. He said that the down side was MRI's have more "false positives", which means more times of feeling scared and having biopsies. I am happy to have an alternative. I was wondering why it wasn't the standard of care for all women under 45.

I found out. An breast MRI is quite a thing. You must have an IV so they can put a chemical in you to track. Then you must lie facedown on a very strange platform with your breasts hanging in two holes, wearing earplugs and noise reduction headphones for 45 minutes without moving. While the technicians make the machine make very loud banging noises. I assume the machine was also close to me and could be claustrophobic, but since I was facedown I didn't get to find out if this bothered me.

IVs are quite a thing for me now. My veins can be very difficult to find and very twisty (did you know that although we all have the same veins and arteries they aren't in exactly the same places on everyone?). The IV can't go in my left arm- Quiz time! Does everyone remember that I can't have needles or blood pressure cuffs on my left? And the big vein in the middle of my elbow was used for the pic line and is currently useless. I didn't know I was getting an IV, and I'm dehydrated(fun fact #2: IV's and blood draws are much easier if the body is very hydrated). The intern not only can't find my vein, but he has to try on the back of my hand where I get a nice painful bruise after he is done searching with the needle.

He very sincerely said he was very sorry and brought me some water and an experienced nurse to get the IV in.... but the point of this long story is that I had waaaaay too much time to think of all the implications of what was happening to me, about what would happen if the test found something, and of hating being back in that place where I needed to sit still and be ok with medical professionals causing me pain and discomfort. Sucks.

Funny enough, I don't know what the result was yet. I'm assuming no news is good news, but I just emailed to make sure.

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Walking

I have started walking this week, every day 30 mins a day. Amazing how walking steadily for 30 mins can really feel like exercise after one has sat around for three weeks.

I have been awfully flaky since the surgery. It is so hard to adjust to what one is able to do. As I sit here I feel fine, so I think I am able to do all sorts of things... and I try to do them and end up (correctly) resting. And not meeting the commitments I have made. Time to make less commitments. Sorry to my Dad and the folks at the SFC new family playdate.

Perhaps the best way I can describe a fake breast- it is to a real breast, or even a half real breast, what a pillsbury pop up croissant is to a real french bakery croissant. It passes for a breast, it is vaguely round and soft, and if you're hungry will fill your tummy.... but it looks and tastes a bit half-baked. Fake breasts look great in clothes. Like one is wearing a really good push up bra. I still need to try mine out in a bathing suit.
Even though it looks about the same as before with the expander.... it was still a bit disappointing take off the wrappings from surgery and to have a fake breast. Not sure what magic I thought the surgeon was going to do. I guess I was just hoping.

I do like the way the implants feel. It feels very very good to have the expander out of my chest.

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Doing well and Kid conflict

Things are going pretty well. Well enough, in fact, that I was doing laundry yesterday and out of habit picked up my gigantic full laundry bag. Then thought to myself, "What are you doing?!?!?" and put it back down! I didn't feel anything hurt, but I did feel sore afterwards. Bah. It's hard for me to remember sometimes that I need to be careful when I start feeling normal.

I've been thinking a lot about conflict between adults and children in public places. We've all been there- some sort of combination of a child or children and adults screaming at each other. I hear a lot of people complain about these situations, tell me that if the parent they had seen had just done X, then Y would have happened and the situation would have been magically healed. And there's the conventional thought that it "doesn't affect" parents the same way it affects non-parents. What I think is this-

It's hard to listen to a child in a conflict with an adult. It doesn't matter who you are. But, if you have children of your own, especially if they are small, it is easier for you to remember a few things-
- There is never an easy answer to the conflict.
- There is always a background story (the child and/or parent were up all night, the child had done the behavior 100 times before the conflict happened, it's just a "bad day", etc)
- The adult is always doing their best job to deal with it.
- It can happen to anyone, at any time.

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Yesterday I had what will hopefully be my last surgery for at least a decade- my doc took out the expander from my left side, and put in saline breast implants. One big one on the left, and a smaller one on the right.

I managed to get the anesthesiologist who doesn't make me sick. Totally awesome.

A word about nosy nurses- Some nurses seem to feel that just because they get to ask lots of personal questions to make sure you're ok, that gives them the right to ask questions that are quite rude. I'm sitting there, trying to stay ok for my 5th surgery in 20 months. It's tough. Surgery is no fun, the potential of feeling horribly sick is high, and recovering is a long often frustrating thing. So I'm trying to hold it together, be positive, and this nurse starts quizzing me- how were you diagnosed? Do you have a family history? and ? and ? and ??

I understand her motivation. I've met many nurses like her, been grilled by them before her. I scare them. They look at me, and they are worried for their daughters/nieces/themselves. Because I'm "so young". They want to find a reason, an explanation so they can feel better.

But I end up crying. Because I am just barely holding it together. I don't want to be there, having surgery again. And here this woman is, wanting reassurance, wanting to do her own study on me. Next time, I'm telling the nurse no, it doesn't apply to my treatment that day, and I'm not going to talk about it.

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Honoring our Ancestors

I was talking to an old friend today, and I realized I have a whole new family to feel grateful for. All the women who have been through breast cancer treatment before me, who participated in studies and gave of their own bodies.

All the things my doctors are doing for me, all the things they "know" about how to treat me, are based upon those women. It blows me away every time how much we "know" now about how much we need to remove with the tumor, which chemo drugs to take and how much, which drugs prevent recurrence. Even with my reconstruction, my plastic surgeon knows he needs to put an expander in me to create a "breast shape" out of my pec muscle and skin, before he puts an implant in. And that's because another doctor tried putting one in another woman with a mastectomy, and her muscle squished the implant flat, and they realized they needed to do something else. And how many women did it take to figure out the expander? How many surgeries?

Thank you ladies. Thank you so much.

I am proud I am doing my part, I'm in three studies- I hope in the future it's even better for those who must unfortunately encounter this on their path.

Looking forward to Spring

Things are going mostly well. I'm catching up slowly. If new things could stop demanding my attention that would be awesome. We're having some trouble with leaks in our house again, and I've been catching up with the IRS.

I had my last expansion... my surgery date for the implants is set! It's going to happen June 1st. Let's all hope that's the last surgery for me for a decade or so.

I'm really looking forward to getting the expander out. It's kinda rigid, and it's still a bit sore around the base of it and under my arm. I think just from there being this hardish thing in me that my body pushes against when I move. It would be nice to not have sore spots. It is funny having this motionless breast on me. No matter what I do that side looks like I'm wearing an uber push-up bra. And also strange since I don't have much feeling there. Just this general kinda soreness... kind of like when you leave your wallet in your back pocket and your butt goes to sleep. You can't really feel it, but you can tell your butt is a little sore from sitting on the wallet.

My hairline changed when it all grew back in. Now my hair grows over my tattoos behind my ears.

Grieving for oneself is an interesting process. And necessary.

I've been doing exercises almost every day... and last week at the playground I could finally hang by my hands from a bar and support my body weight! That has been a long time coming. I've been doing handstands to help work up my strength, too. Those are fun! Now for a pull-up. I want to install a bar in the house to hang from.

Thank goodness for the Guided Meditation and Affirmation CDs that Kaiser gives out. I would be addicted to sleeping pills without them.

My 20 year high school reunion is this summer. I can't wait to go with blue hair. The kids at Zoom's school aren't sure what to make of my new haircut. I've gotta take pictures.

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