2-28-10

Brain bummer for the day... I realized I can't be an organ donor. This is a slightly big deal to me. I have been on the Bone Marrow Registry for a decade. I am a firm believer in recycling your old stuff. I shop at thrift stores and I donate stuff to Goodwill or I Freecycle it.

So, to realize that even on someone's death bed, they would not want my organs...well, it hurts my feelings. It is like knowing that the Goodwill store won't take your clothes, the clothes you are currently wearing. My clothes might not be the most up to date styles, but they are functional and cover my nudity quite well.

So to think my organs are completely useless is a real drag. Apparently, I have to be dancing with NED (no evidence of disease) for 5 years before they would consider letting me donate.

So, I read about whole body donation, letting my cadaver be used for medical students. I asked the kids about it, one of them got weirded out. She says I am only supposed to teach them, but she did come around and realized that I would think it is cool to be able to teach people even after I am dead.

I am walking around in a completely useless body, how can I NOT take that personally? No one wants my leftovers!

2-28-10

The kids have told me the new chemo has made me more mean. They said that last chemo made me sweet and sleepy, the new chemo has me awake, in pain and grumpy. They just want me to take a nap. Last week, I had terrible pain in both legs and I thought, "At least it is not in my shoulder". So of course, this week, it is all down my left side, neck shoulder and leg. So I will now say for the record, "At least it is not in my left pinky finger, or maybe left ear lobe" (trying to think of places that pain will hurt less, since I seemed to have jinxed myself).

I tried taking a pain pill one day, that didn't work. I can't homeschool the kids on drugs. My daughter had taken an allergy pill and I had taken half a Percocet. I was trying to teach her about ratios and I think we were speaking different languages. But, once the drugs wore off, we tried again and she got it.

Food is more of an issue, nothing has a flavor. Youngest daughter suggested if I can't taste anything, I should just eat spinach all day. Great idea but over salting processed food and eating large bowls of ice cream is so much more fun!

I had a weird dream last night, and I remember my mastectomy scar being in my dream. Someone asked on the breast cancer support board a question about do you dream with boobs? I guess I don't now. I wonder if it just takes awhile for your brain to "get it". Of course, I don't remember dreaming with boobs (having boobs in my dreams post cancer). The dream was about my siblings and I all going to a Motley Crue concert and my scar kept showing. My siblings, Motley Crue and my scar, I am sure there is a lot to analyze there!

On a positive note, my children's father and I actually had a conversation, like a genuine co-parenting moment! We have been very estranged since the divorce, not a functional relationship at all. He wanted help or advice in repairing his relationship with our daughters. That is huge. I did reveal to him that I am concerned about surviving long enough for them to reach 18, I would do anything to assist in the father-daughter relationship so I would know they would be OK if something happened to me. He didn't have anything to say to that, I am sure it was a big bomb shell to him since we have not actually discussed my cancer.

I told the kids that Dad wanted to hear them and could they please try talking a little to him. They spent Friday with him and they were very happy when they came home. I know it is not going to get fixed over night, but they shared a little and he was available and approachable, that is such a big thing. It is kinda like a Bucket List item, granted, it is one that I have very little control over. But I can't imagine how it would feel thinking I am dying and knowing that my kids don't want to live full time with their father. That is one of the most heart breaking things they have told me.

So I am feeling grateful today.

2-23-10

I just woke up from a lovely Benadryl induced coma. Good nap. Having never used Benadryl, I realize how much good sleep I have missed out on.

I wore the shirt, nurses chuckled, I won a small battle.

2-23-10

Interesting brain thing going on...

I had a T-shirt made that says "My tumor went to Milan and all I got was this lousy T-shirt". I think it is funny (My tumor DID go to Milan as part of the research I am participating in.) OK, so I want to wear my funny shirt to chemo, maybe the nurses will laugh. But, I need to wear a lower cut top so they can access my port.

I want to wear the blippin' shirt, I don't want to have to work my wardrobe around this blippin' port that they use to inject me with blippin' poison. I want to be the boss of something!

This has happened before, can't remember what about though. Me, trying to retain control on some mundane detail since I don't have any control on the really big stuff.

I am gonna wear the damn shirt, they can cut the neck off if they have to, this is important to me.

2-22-10

Interesting weekend with the new chemo side effects. I had some pretty significant joint pain, knees and hips. My leg muscles were knotted up, driving was really uncomfortable. This made my job interesting. I work in Physical Therapy in a nursing home, helping the elderly work through their disabilities to get back home. I was limping worse than many of my patients.

This should be an interesting three months, especially if it gets worse every time. Pain makes people grumpy, three months of grumpy could ruin my sunny disposition. (That is a joke).

My right arm and chest is also another interesting facet in this cancer thing. Every morning, it is a little different, swelling here or there. My chest feels like a cooked pork chop, but every day, it is a different pork chop. But it is not a dried out pork chop, not now, I guess radiation will add to the well doneness of my strange modified region.

I also am wrapping brain around how ineffective my brain actually is. I have lost confidence in my sensory input. Hot flashes make me realize that I should not be in charge of the thermostat, my input is flawed. My taste buds have rendered me useless in the cooking chore, my input is flawed. I am always looking for a mystery odor that apparently, does not exist.

But good news, my nails look great. I have a skin condition which causes the white part of the nails to grow too far down and lopsided. Chemo has cleared that up for the most part. My toenails even look nice. But the bad news is that this chemo can make your nails fall off, so I should enjoy them for the time being.

2-20-10

My kids are at their Dad's most weekends. So, on weekends, I think about reconstruction. I look at pics of reconstruction, I see a lot of boobs, foobs and noobs on weekends. I still have made no decision about reconstruction. I have one saggy boob and one surgical site. I am oddly OK. Cancer has increased my self confidence. I am not attractive, never have been "pretty". I am an average looking middle aged woman (wow, middle aged!).

Maybe I feel like I am in a different "pagent" category now. I don't have to look good in the 40-something soccer mom category. I am now in a bald, boobless, scarred category.

I haven't come close to making a decision about whether I need two boobs. I am curious how this will turn out, me and my brain. I figure I will have to wait and see what a plastic surgeon says, but I haven't even bothered to find a plastic surgeon.

Even the woman on the breast cancer support board seem to feel that a unilateral requires reconstruction. Many people stay boobless on both sides, few stay lopsided.

This is me... lopsided.

2-18-10

Ahh, the new chemo learning curve. Started new poison two days ago. I really tried not to read about all the annoying side effects, hoping to avoid them. First, the pump you up with steroids and Benadryl. The Benadryl is to avoid an allergic reaction to the chemo. So it was pretty much nappy time for me after mainlining the Benedryl. My legs cramped during the infusion, post chemo googling tells me that Benadryl exacerbates Restless Leg Syndrome. Luckily, it only lasted that afternoon.

Constipation or diarrhea, pick your weapon of choice. The last stuff constipated me, apparently, we are going the opposite direction this time. The breakfast I cooked, smelled like gym socks. My head feels "chemically", but not nearly as bad as the "red devil" made it feel. The kids have not told me I smell like chemo.

So even though I sound like I am complaining, so far, so good. I wasn't expecting the diarrhea, but now that I know, I can adapt. If I can stop eating stuff even when it smells like locker room, I will be OK. Logic would say to stop eating stuff that tastes nasty, but I just keep trying. I figure more salt will fix it, I am surprised my blood pressure is not increasing.

I do think a nap will be in order soon. But, I am so much better than the last chemo. For that, I am very grateful.