Sunday, February 28, 2010


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!


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.

Tuesday, February 23, 2010


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.


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.

Monday, February 22, 2010


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.

Saturday, February 20, 2010


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.

Thursday, February 18, 2010


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.

Tuesday, February 16, 2010


New chemo in a couple of hours, that is a little nerve racking, a new Pandora's box of side effects. I will soon find out who I will be for the next twelve weeks. Eh, that makes it sound like my cance defines me, it doesn't. But, if I am going to have joint pain and nausea and shit (or lack of shit), that will make me grumpy and that is who I will be.

Yesterday, I treated myself to a little breakfast and the meat-n-three place in my neighborhood. They know me and my cancer cravings. We were talking about the snowy roads and I said that I probably won't have a car wreck since I already have this cancer thing going on. They proceeded to tell me about a guy they knew that beat cancer, then lost a leg, had open heart surgery...then, plane crashes into his house and he and his wife die instantly. True story, I remember that plane crash. I guess you don't always get credit for time served in the list of crappy things that can happen to you.

Roads are snowy, I'll be cautious.

Monday, February 15, 2010


I wish I had deep and thought provoking stuff to post. I wish that I was one of those people that had this huge shift in my disposition when I was diagnosed. But, I don't think I did and I have nothing deep nor thought provoking to share.

I had to have a impromptu echocardiogran today at the last minute. My usual echo guy is, well... a guy. This time, I went to a different place and a lady did the echo. It is interesting to me how different a man and a woman clinician deal with my chest area. They are dealing with my heart and I still have a boob on that side. Echo man is always very thoughtful, very discreet and has not seen my boob even though he does the little ultrasound all around it. Echo chick was less thoughtful, les discreet, boob flooping around out in the open.

Personally, it is not a big deal to me. During the test, the boob is a mass of fatty tissue sitting on top of important stuff. But, as a health care professional, I can imagine how frustrating it may be for some women to deal with the loss of privacy. So Kudos to you Echo Dude, you do a great job!

New chemo regimen starts tomorrow. So, possible reality change tomorrow. I try not to read too much about all the crappy side effects as I am pretending that this will be easier than the last round and I don't want to mess up my pretty delusion with nasty facts and stats.

I worked at the nursing home bald and sans hat all weekend. Everybody was pretty cool with it. I get hot flashes, a lot, my head feels like it is on fire. I am tired of being hot, so I went without a hat. I figure it is pretty obvious that I am bald even with a hat, it is not like I am fooling anyone. I'll still try and do my best to keep my head covered for my Mom, she digs denial, it's her thing.

Friday, February 12, 2010


Valentine's Day is the second anniversary of my dog's death. Her name was Lexy, she died of cancer. She had surgery, but it came back, cancer sucks. My kids and I are contemplating another dog adoption. This is a big deal, dogs are a large investment. If I do this, this is a sign of optimism, that I will be around to care for another being.

I am signed up on a Find-a-Pet site, have been for a long time. I have been putting it off, waiting for the end of treatment. But, maybe it is time, to start planning stuff again (other than my demise).

PET scan came back with tumor shrinkage, not tumor gone, but tumor smaller, this is good. I start a new cocktail of weekly chemo on Tuesday. Perhaps I will not prepay for my cremation, I will chance the price increase. Live on the wild side!

I ordered a little headstone thing for Lexy today, it just has a picture, her name and "Damn Good Dog", because that is what she was. We miss you, Lexy.

Monday, February 8, 2010


The importance of make-up! See, eyebrows are important (ignore the turkey waddle neck thing)

Edited to add: if you click on the pics, you get real close up, scary close up. You can see the weird eyebrows and the strange chicken fuzz growing on my head!

Saturday, February 6, 2010


Preparing to lay down for the night (before 7:00 PM, how sad), go wash my face and it seems my face just washes down the sink. With very few eyelashes and eyebrows, it is funny how my face just disappears. I could do some impressive before and after shots, send them to the company I get my make-up from and probably score some free stuff!

When I was a kid, we had a barbie that we marked up with magic markers. We used fingernail polish to remove the marker and it took her eyeball off too! That is kinda what I see when I look in the mirror, plus the bald head. We used Liguid Paper and pen to draw her eye back on, it actually came out pretty well. Good practice...

Thinking about chemo... decided to believe something. If the chemo can kill cancer and hair and eat up mucous membranes, perhaps I can pick some other things to have it kill. How about self doubt, lingering guilt and shame, excuses, procrastination... If all these cells are dying off, I can believe that some of my character flaws can be killed off too.


I was laying down the other day (which I never used to do, thanks chemo). As I lay trying to nap, I realized I was laying like a person in a casket (which I never used to do, thanks mastectomy and the six pillows I now use).

Anyway, I was seeing myself in my casket and got freaked out. I have so few eyelashes, should I have them put on false eyelashes on my corpse! This train of thought screwed up my napping process so I got up and starting googling cremation info. I always intended to be cremated and figured this was as good a time as any to compile some info. So now, I have a nice price list of the local crematorium packages, I'll put it away for my family.

Hopefully, they won't need it for a long time.

Next I had to think about the "fixing up the dead body so people can say good-bye" thing. I have decided that is not necessary (I took a quick phone poll of people whose opinion I respect). I do think my Mom and my daughters should be able to view the body, just the people that I actually shared a body with at one time.

So, that is my plan, Mom and kids say good-bye, I get "disposed" of and everyone else have a nice pot-luck dinner.

The cheapest crematorium's prices go up at the end of February, if my scan comes back bad, I may go ahead a pre-pay. It will save me $260 of my children's meager inheritance. (If you knew how broke I was, you would smile at that).

This may all sound morbid, but I feel if I can take care of the business of dying, I can focus on the business of living.

Wednesday, February 3, 2010


I found this interesting...

Back story, my kids are homeschooled, 10yo DD needed to go to the local school today to take a state test.

So, 10 yo DD says, "Mom, I don't want to offend you, but would you mind wearing a wig today?". Hmmm, interesting. I gladly put on my wig for her, but of course, I am curious about her request. She tells me that kids are jerks and will stare at me and that will frustrate her and distract her from doing her best on her test.

I thought that was cool. She can articulate her feelings so clearly. I did ask her later if she would prefer I wear a wig all the time when we are out. She said no, grown-ups aren't as rude as kids, so she only wanted me to wear a wig to the school.

Alas, the test was postponed due to the recent snow, so we have to go tomorrow. But that gives me more time to style my wig!

Tuesday, February 2, 2010


Kids decorating my head.