Wednesday, October 31, 2007

The World's Ugliest Christmas Ornament

I still have the three steri-strips over the stitches where my portacath was removed, so I don't really know how it looks yet, but other than that, I am stitches, marks, stickers, fresh burn and appliance free. And it feels GOOD.

The portacath area does not hurt all the time anymore. Now I just get reminder twinges when I move my arm or shoulders in ways that affect the muscles there. Which I do a lot. It's like when your hurt a muscle in your back only to discover that you use your back muscles to do everything. Well, it turns out that you use your chest muscles every time that you use your arms for anything, even something small like typing or bringing a cup up to your lips. Makes sense, but you don't get around to thinking about that until it hurts for some reason. But, I can totally live with that. It bothered me a few times last night, but I went to bed without any meds and woke up refreshed!! Yah-hoo! I'm beginning to think that this thing really won't have me in its grip forever.

I got an interesting e-mail from my brother today. He suggested making a Christmas ornament out of my portacath. I like that idea. I do plan to keep some souvenirs of this time. I don't know yet how I'm going to do that. I was thinking something like getting a pretty box, filling it up with my portacath, some caps that I just can't let go of, and my files and then just putting it down in the basement.

But if I make the world's ugliest and most expensive Christmas ornament out of the portacath, I will see it every year, and as I put it on the tree, I can take a moment to breathe a sigh of relief and say a few words of thanks that I'm still here decorating the tree for another year. I'm going to think about it. It's a strange idea to hang some metal thing that was in your body once on the tree, and yet its not a strange idea at all. The holidays are a natural time to remind yourself of all the things that make you feel grateful. So I'm starting to think now of ways to mark this milestone, that's a nice change and yet another step away from being a patient and toward being a survivor.

Tuesday, October 30, 2007

Portacath Removal

I had my portacath removed yesterday.

It was so important to me! I just could not feel like this was all over until that thing was gone.

So....was it a long painful process? No. Was is a DISCONCERTING one? Oh, yes, it sure was.

I had to get to the surgery place an hour early to get prepared. They took me into a room with a reclining chair instead of a bed. I had to take all my clothes off (because there were metal grommets on my pants) and put on a hospital gown, socks (this place always gives you socks to keep your feet warm, I love that), and a paper hat. They came and asked questions and took my vitals. They did not give me any medications. I wish I had known that, I think it would have been a good idea for me to take a Xanax a couple of hours before. I did remember not to wear any jewelry except my toe rings. I remembered to take those off at the last minute, and my husband held on to them along with my glasses and my purse.

They let me walk to the operating room on my own, and I got to hop up onto the bed (I do mean hop, that thing is way up there). They had this amazing blanket that is made out of paper with holes in it and hooked up to a heated blower. They put it over me to keep me warm. Then they hooked up the blood pressure cuff and finger thing that takes your pulse.

They propped up the back of the bed so I was partially sitting up, and covered the area with these blue towels. Then I got the lidocaine shot. That hurt. It burned and stung for quite a while as she worked the eerily long needle into various spots to make sure she got the whole area.

I could not see my chest, but I could see all the tools they were using. First she made a cut with a scalpel, then she grabbed this laser thingy. It made a crackling sound, and made smoke. The surgeon said it was indeed burning my flesh as she worked down through the layers. I broke out into a full body sweat. It didn't really hurt, though I could feel tiny little shocks from it. I just had problems with the wisps of smoke and SMELLING MYSELF BURNING!

Then I could feel tugging as they worked the portacath out of the pocket that had been made for it in my chest. After that I could feel tugs as she stitched the cut up. She put steri-strips over the stitches.

They used a wheelchair to take me back to the lounge chair room so I could change back into my clothes. They don't give out pain meds for this procedure, they just recommend Tylenol. To hell with that - I had some Percocet left and put it to good use.

They also cleaned up the portacath and let me bring it home. For some reason, I like having it. I showed it to the kids, and I spent some time looking at it and reveling in the fact that it is now in a plastic packet instead of being in my chest. I like it much better where it is now.

A couple hours after I got home, the area got a reddish looking streak around it, and you could see that it was swelling. I put ice on it. By morning, the reddish mark was gone.

It has been fairly uncomfortable today, not agonizing, just uncomfortable.

I took a sick day just so I could rest. And I really did just rest. I re-heated pizza for lunch and spent the day dozing and watching Gilmore Girls DVD's.

I really needed a slacker day, and it felt good to take this time for myself. During this whole thing, I have spent days in bed of course, but always because I had to. This time I did it because I wanted to. I wanted to be kind to myself and just take some time to heal.

Thursday, October 25, 2007

Which is it? Hot Blooded or Cold As Ice?

I had a long day at work yesterday. And a long one on Monday. I'm getting tired.

Last night was the first night that I didn't take a Percocet at bedtime. Yeah!! And I slept fairly well. I still got up a few times, but I got back to sleep easily.

The burns on the boosted area are taking their time to heal. They are still very red and itchy and the skin feels tough to the touch. If I had a leather jacket that felt like that, I'd buy a cream and treat it. It does not feel like skin that should be on a person, that's for sure.

The other areas that got radiation but got to skip last week are starting to look more like a tanning bed accident, or George Hamilton's face. The skin there is still sensitive too. It hurts sometimes during the day, and it still yells at me when I'm rubbing creams and oils in. The area towards my armpit is currently the most offended by the whole thing.

I'd say the biggest problems that I have right now are fatigue and temperature changes. On my drive in on Monday, I spent the whole hour changing the thermostat on my car from coldest setting to hottest setting about every five minutes. When I go into meetings, I start out with two or three layers and a hat on, and at some point it probably all comes off, then gets put back on again. The hot flashes are bothersome to be sure, but the cold ones are even stranger. My skin will feel hot to the touch, but I am freezing on the inside. A cold flash often follows a hot one. I'm not sure I can adequately convey just how annoying, exhausting, and occasionally embarrassing this is. Oh, yah, and I also get out of breath ridiculously easily.

I am working from home today, and glad for the break from my commute, from non-stop meetings, and from being around people. I never realized how much energy it takes just to chat. Turns out that it is more than I have.

I also went to see my acupuncture lady.

This time some of the needles were slid in sideways, under the skin. Huh. I could feel it when they went in, I didn't really hurt, I could just feel them going under my skin mostly, a couple stung a little. Other needles were just poked in and standing up fairly straight. I thought that was pretty interesting. I had needles in my head, forehead, neck, chest, arms, legs, and feet. I did spend some time wondering if I could pick up FM signals.

I enjoyed the time that I spent laying there in the dark, relaxing (although someone in another room was fairly noisy and I had to use some effort to keep my mind from wondering what on earth was going on over there). I do feel more relaxed and a little sleepy after each treatment. It is still helping with the arthritis in my thumbs. Now we are working on helping with being out of breath, healing from burns, and trying to even out my thermostat. I sure hope it starts to help with that!

Tuesday, October 23, 2007

Plugging Along

I went to the chiropractor yesterday morning. I had two ribs knocked out of place, not one.

She got them back in easily, so it doesn't hurt to breath any more. The areas on the front and back of my side still hurt like crazy to the touch. I've had ribs go out about three times in the last 10 years. If I look back at the timing, it was always during times of great stress and exhaustion. So I guess I shouldn't be surprised that it happened now. It does feel like getting kicked when you are down though.

Then I went into work for meetings. One meeting was cancelled (at the last minute AGAIN - chuh!), but another one popped up to take its place. I went to lunch with my friends. We ate outside. It was a refreshing little escape.

I had a lot of work to do, so by the time I looked at the clock it was past 4:30 and raining. I knew I was screwed as far as traffic goes, so I went over to catch up on things with my boss. We always have a lot to talk about, so I knew it would take a while.

I ended up not leaving work until after 6. I was tired, but doing OK. I had some sushi style spring rolls that I picked up at Wild Oats to snack on, and I figured I would have an easier ride home because I let the traffic go by first (I was wrong about that part, things were still a total mess due to the rain). When I got home, my husband was furious that I stayed at work so late after having such a hard day yesterday. He was mad because he didn't think I was taking good care of myself.

We talked about why I decided to stay late, and he calmed down pretty quickly. We both knew that he was mad because he cares.

That was an ongoing theme yesterday, people telling me that I should go home. Pretty much all of my friends dropped by and said "why are you here?". I explained that I had meetings to attend, and they universally said "so call in for them".

I do indeed call in for a lot of meetings, but there are others that I choose to attend in person.

Turns out that many people express their care and concern for you by telling you what to do. I make a real effort to be patient with that.

So, how's the bod? Well, the burns on the boosted area are still sore and troublesome. The skin is bright red, tender, and itchy. I still move more slowly and gingerly than usual. I've noticed that since I have less energy, I also have less patience. I'd pretty much describe myself as exhausted but functioning.

I'm not used to living with physical limitations and living with pain. I'm learning though.

Sunday, October 21, 2007

Patience

Well, I've had two days without radiation.

Tomorrow, I start my day by NOT going in for a treatment or a doctor's appointment of any kind.

So, mentally, I am so ready to move on, to feel good, to do what I want when I want.

But I still feel awful.

I got in a fair amount of walking on Saturday, it was at a slow pace, but I stayed up and around all day. There were times that I felt really horrible though and I was only standing up due to grim determination.

Sunday, I lounged around watching the old folk's show (that's what I call Sunday Morning), and did not even get out of bed until sometime past 11. I took a quick shower, and that was enough to wear me out. I spent the rest of today being pretty slow and deliberate and getting out of breath easily.

My younger son asked me how long it would take before I felt better. I've heard 3 months, six months, a year. I told him that I didn't know but that I expect that I'll have more good days than bad pretty soon. He said he wanted his old Mom back. The one that smiled all the time.

He sure is perceptive. I've completely lost my enthusiasm, my curiosity, my spark, my lively interest in the world. I really can't wait for those things to come back.

Since I've made the mental jump from patient to survivor, it is very hard to wait to feel better physically. I pretty much wake up disappointed.

Physically, here's the status report: my hair is still getting thicker. Instead of growing any length, it just gets a little more dense every week. You can still see my scalp through it easily. I has the fine texture of baby hair and it's fun to run your hand through. I also have a very subtle mohawk because the hair meets down a line at the top of my head. My energy level is better than the lowest days of last week, but it is still very low. My skin is starting to brown in some places, but the predominant colors are still red and pink. I have not even tried to go a day without lotions all over it. The skin doesn't sting when water touches it anymore though, which is great - that means it's back to the land of lollygagging in the shower and soaking in the tub. That is my most luxurious pastime currently, lounging in water.

Saturday, October 20, 2007

Celebrations

Here's what we did to celebrate.

I went into work for an afternoon meeting. Right as we were getting ready to leave, we had a delivery. A friend from work sent me a bouquet of tiny pink roses in a teacup and saucer. What an amazing surprise! I love it and I'll think of her every time I use that cup.

My husband drove me in, and a friend who lives near me gave me a ride back home. It was nice to have the time with her on our drive back.

There were treats waiting for me when I got to work too. One friend gave me a pumpkin shaped bath scrubbie and a bunch of Moulton Brown bath/shower gels. She is so thoughtful and has been so supportive as I've gone through this. She leaves a treat for me every week. Another friend left me a little desk gargoyle (he is way cute) and the new temporary tattoo that we ordered as a promotional item at the office. It was my idea, and it took about three years to get my boss to try it. I put the tattoo on my bicep right away. So, while I was in the meeting, if I looked over at the other members of my department, I could see their tattoos too! I love that!

I got home just minutes before my husband, who came in bearing Chinese takeout (we get it every Friday night), an assortment of Baklava (just as a treat), and a bouquet of red roses. He had the kids give me the flowers and shout "Happy last day!". My niece joined us for supper and we hung out talking and crocheting for a while.

We were waiting to hear from a friend who wanted us to go out later, so we had a little time. So what did I do? You guessed it! I took a BATH. I used pink grapefruit bath powder, took off the last of the stickers and stayed in there until my friend called. Left on my own, I'm pretty sure I could have stayed in the tub for days. I'm having problems with a rib on my right side, so it hurts to breathe most of the time, and most positions are uncomfortable. I felt great in the tub though, I guess the water provided support. I'm going to try to see my chiropractor today to see if she can help.

Our friend was getting together with a couple of friends, one of whom is currently going through chemo. I got out of the tub and got dressed again to go out. My husband stopped me to read a poem that he wrote for me and posted on his blog. It was sweet and we both got misty while I read it. Then we headed out to the restaurant (while my niece stayed home with the boys) and we stayed until the place closed! I can't remember the last time we just sat around drinking and talking with friends, or the last time we closed a place. We both had a great time.

Low key celebrating and time with so many wonderful people was the perfect and most restorative thing I could have asked for to mark the end of these long hard months. As I looked into the faces of my friends, I really felt that I didn't do this alone, we all got through it together.

Friday, October 19, 2007

Last Day!!!!

I went in for my last radiation treatment today.

I'm tired, but feeling much better than I have the last few days. The burns are settling down and they don't hurt as much, so I don't have to walk around with a ton of sticky creams on and no bra. Boy, that was just adding insult to injury. I do still have creams on, but I can use a thin film and so far I'm comfortable with just that. I feel so much better that I am wearing normal clothes, no sweats, no baggy t-shirt!

They were running late today, so I froze in the little radiation waiting room. My husband gave me his jacket and it covered me up so much that the radiation ladies couldn't see me when they came to get me.

I wore my new Coach shoes in celebration, and of course, the ladies noticed. Of course I crowed over how little I paid for them.

After my treatment, while I still had my top off, I peeled off the two stickers that were on the sides of my rib cage, the skin there did not get radiation, so it was easy to peel them off. When I came home, I was able to get the three on my breastbone off easily too. So now there are only two stickers left. They are on radiated skin, so I'll just let water run all over them in the shower, and cover them with creams now until they peel off on their own.

The ladies made a certificate of appreciation for me which they all signed and of course, we all hugged. I thanked them for making a painful situation as fun and easy as it could possibly be.

As we were walking out, my husband was shaking his butt at the building in defiance. On my last day, he has been joking that we should spray paint the building or moon the front windows or something. There was a lady standing by the front door, so she started laughing. We stopped to explain that it was my last day, and she stopped to talk. She was there for her three year check up after going through the same treatments. She had eight chemo treatments though, not four. And she is doing great. She said it took her about six months to recover her energy after the treatments.

I love meeting survivors and hearing their stories, it makes me feel like I'm not alone and that it won't be long before I'll be back to normal just like they are. I'm so grateful that they are willing to stop me and talk about it.

Thursday, October 18, 2007

One More Day to Go

I thought I was doing a little better yesterday.

True, I was so tired that it was painful, but I didn't take pain meds all day and I was able to do everything that I needed to do. It was hard, but I could do it.

I got a ton of work done too. I had meetings to attend (by phone), and a ton of projects to work on and e-mail was bringing new work at a steady pace. It felt overwhelming at times, but I just sat here in bed and worked through it. It made the day go by quickly.

I had been putting Tamanu oil all over the burns and they looked better and I was more comfortable that I have been.

Then came the evening.

The burns started to look and feel as bad as ever. I had the surface sting that you get with a new burn, and that sting covered the whole area. I had a horrible headache, and I got so tired that I started to wonder if my heart would still have the energy to keep beating. I tried to remember the symptoms of radiation sickness, but I really could not concentrate. I suppose that was a mercy, I couldn't concentrate enough to get myself all worked up and scared about how bad I felt.

I slathered on a bunch of creams and oils, and I took a Percocet (I still took only one, so I guess we can see that my stubborness is not affected by either chemo or radiation, nice to know something isn't), and after about 45 minutes, I fell asleep. As I was falling asleep, I started getting those internal chills again. I was under the comforter, I could feel that all my skin was warm and toasty, but my insides had the chills. That is one strange sensation. It comes in tingly, icy waves.

I woke up a few times. Around 4 a.m., my huband and I watched an old episode of Bonanza together.

I told the radiation ladies how I felt when I saw them this morning, and they think I'm having a chemo flashback on top of the symptoms from six weeks of radiation.

That makes sense, I suppose, but it sure sucks.

I have one more treatment tomorrow, then I am done. People keep asking me how I am going to celebrate.

I think I am too worn out to celebrate, but I may have just enough energy to feel relieved. My big celebration might be taking all the stickers off and climbing into the tub. I have not been able to wallow in the tub for eight weeks now, a cruel thing for me. The tub is where I go to escape and regroup, and I have not been able to do that because the water would take the stickers come off.

My younger son gave me a card that he made. He could not wait to give it to me tomorrow. It has a big cat face on the front, and inside it says "Life is sometimes like a big battle, you will win this one easily. Happy last treatment!" Then he drew a big picture. In the picture, I am an ATAT from Star Wars, and all of my treatments are a tiny little speck of a robot. Needless to say, the robot is getting his butt kicked by my superior firepower.

Wednesday, October 17, 2007

Too Tired to Feel

I went to radiation this morning. All I could manage was sweats and a t-shirt. And of course, no bra. Nice! My husband kindly pointed out that ever since we moved to Kentucky, bras have always been optional.

My youngest son asked me if I would join him for lunch at school today. He mentioned that I have not come by for lunch during all of this time that I have been working from home, and as a bonus, that they were serving a new item today, chicken rice bowl.

Of course I went. As I waited in the hall, the principal stopped by to chat, and I kept waving to all the kids that I knew as they walked by. I used to volunteer in my older son's classroom, so I knew just about everyone then, but it surprised me now how many people I still know. As we were waiting in the cafeteria line, one of his teachers came and got us and moved us to the front of the line so I would not have to stand so long.

The food line was even worse than I remembered. Catering style bins of rice, then one of nasty looking chicken shards, jello, canned mandarin oranges, and tiny red apples.

I got rice, oranges, and an apple. The apple still had the sticker on it which made me wonder if they ever bothered to wash it, and it was sour and hard. Neither of us were up for trying the chicken bits.

Ick. No wonder he wants me to pack for him every day.

I knew all the kids who sat at our table. We talked about video games mostly.

Then I dropped by the oncologist's office to deliver a black pom pom hat to the lady and her daughter who asked me for one a couple of weeks ago. We all hugged, but I got out of there pretty fast, I was just too tired to stay and chat.

And that's pretty much where I am. I'm not suffering. I take a pill if I am, and the skin in some areas is already starting to heal (if you do radiation, go to the health food store and pick up Tamanu oil - it really helped), but I am so tired that I am numb.

Hanging in There

I took a sick day yesterday.

I had three appointments to go to, but around those, I stayed in bed.

During the morning, we had a rain storm, and I sat in bed with a good book (Barbara Kingsolver, Animal, Vegetable, Miracle), and a cat by my hip as I listened to the rain and watched it fall. It felt so good to know that I could just rest all day. I was so tired, I did not even get up to make a cup of tea for myself.

In the evening, my niece came over to make dinner (a terrific stir fry) and she and the kids did the dishes too, so I did not have to do anything.

A friend called and offered to bring a movie over. So she made it here in time to have dinner with us, and then we settled into my bed to watch the movie. It was "The Long Engagement". I don't think it will end up being my favorite movie, but I sure loved spending the evening with a friend and watching something new. I had not heard of this one. It is in French with subtitles. The scenery was beautiful at times, the characters were interesting and their French was beautiful to hear. And I got a little crocheting done too, the scarf is now about 7 inches long.

I've known the friend who came over last night for about 9 years now. I met her at a job that I only had for a few months (a consulting project). She works with me again now, and she has been in my department for a couple of years. She is teaching a class at work this week, and she taught one last week. So I know how much effort it took for her to call me, come over, and stay late to enjoy the movie. That made it all the more sweet for me, it felt like "stolen time" that we grabbed away from all the cares and worries of the work week.

The movie ended on the late side, so by the time she left, I was very uncomfortable and feeling shaky and frantic. I had a little snack, and took a pain pill. It worked wonders and I got a good night's sleep too.

Tuesday, October 16, 2007

T Minus Three and Counting

I had another rough night. I took a pain pill and it did make me more comfortable, but not enough to sleep well. I woke up at 3 as usual, though this time it was from pain, not a hot flash, so I took another pill.

I can take as many as two Percocet every four hours. I have only been taking one so far, and I wait until it hurts enough to take another one, I don't just take one because four hours have passed. I think I'll try taking two when I go to bed tonight. Taking one helps a lot, but it does not stop the pain entirely. Maybe two will make me comfortable enough to get some sleep.

I'm over being reluctant to take them though. Now I'm just glad that there is something I can do to help me get through this.

I took a sick day today so I can stay in bed, get some rest and take as much pain meds as I need without worrying about trying to work too.

I counted more slowly today during my treatment and I made it to 20, so the single booster zap that I'm getting is something around 20 seconds long. All I can say is it manages to feel like a long time when you are going through it.

I have tried every cream and oil under the sun on my skin. I do think they are helping, its just that the burns will continue to get worse as long as I have daily treatments, so there is only so much that the creams can do.

I have only three more treatments left!!

Monday, October 15, 2007

First Boost

I had my first "booster" treatment today.

They set me up with the scaffold thingy, with the machine pointing straight down at me. They put a gel pack over the area to help slow the radiation down and keep it shallow. That's fascinating to me. The gel pack feels nice for some reason. I got to see the template that is at the end of the scaffold. It is metal (lead I'm guessing) and custom made for each patient. The doctor draws the shape as part of the treatment plan and they have it cut out of metal so they can use the template to control the area that gets radiation. Huh.

I only get one treatment now, instead of five. But it feels very long. I counted to over 30 while the machine was on, but I think I was counting very fast. I'll try one mississippi, two mississippi tomorrow to get a better feel for how long it really is. It is seconds, not minutes, that's for sure.

I saw the doctor today (don't have to see her again for four weeks!) and told her how completely miserable I was over the weekend. It got so bad last night that I took a Percocet. My poor skin is so burned that it is peeling off in spots. They need to keep on going for this last week, so I am supposed to just keep taking Percocets as often as every four hours to just get me through it. Since I am the most stubborn person on the planet, I am not taking meds so far during the day. But I will take one tonight. By night time, I am worn out by the pain, and I know I need the relief, not to mention some sleep. I'll even go so far as to take more if I wake up in the middle of the night due to the pain. But I'm going to try to keep my days as normal as I can. For now.

I also saw the acupuncture lady today. We talked about how I am doing. I don't see any improvement in sleep yet, but the arthritis that I got in both thumbs during chemo is almost totally gone! That's great. I'm also finding it easier to relax. I told her how much the burns hurt, and initially, she asked if she could treat all around the area without actually touching any burnt parts. I said yes. Then she got a look at it and said she didn't want to go anywhere near it! I don't blame her. So she put some needles on the other side of my chest instead.

During this treatment, it was much easier to relax while I was there for the 20 minutes that they leave the needles in.

So far, I think it has been very helpful, and I'm glad I'm trying it.

Sunday, October 14, 2007

A Nice Night After All

I had a couple of invitations yesterday.

First, I was supposed to go to the sold out UC vs. Louisville football game. Good friends of ours invited us to drive down with them and a group of their friends, tailgate a bit, then go to the game. I have never tailgated or been to a pro football game. So on one hand, those tickets sure were going to be wasted on the igonorant if I went!

All day, I debated. I knew I did not feel good enough to go. I knew that. But I wanted to go. I wanted to go to feel normal. I wanted to go just to prove I could. I wanted to go out of sheer stubborness to show that all this just can't keep me down. I wanted to go because I love my friends.

But I didn't go. I was too miserable to face an hour and a half car ride with a bunch of people, and sitting outdoors in a crowded stadium, and staying out so late. I cried when I decided that I would not go.

Later in the afternoon, I got a call from one of my dancing friends, inviting my husband and I out for dinner at an African restaurant before the second Saturday dance. I wanted to do that too, but I skipped it. I wasn't up for the dance for certain, and I was not feeling up to being around people as the day wore on. I was pretty miserable, and not interested in being good company.

So, what did I do? My niece was coming over to stay with the kids since she thought we were going to the game, so my husband took me out for dinner. We went to an Italian restaurant that we had never tried before. The food was excellent. I also had a nice white wine that came from the vineyard that my huband visited in Italy just a few days ago (Bertani, the wine he brought back for us is an Amarone, a red. We are saving it for a special occasion). Between the good wine and the great food, maybe that was our little trip to Italy together.

Then, we were looking for something to do after dinner. We looked at the paper and talked about seeing a movie or going to the symphony or going to Jungle Jim's to see what kinds of Italian wine they stock. I wasn't really up for any of that.

So we ended up at Forest Fair for a walk. If you aren't from around here, you won't know about Forest Fair. It is a HUGE, mostly vacant mall. It has struggled for as long as I've lived here. They got a couple of big stores like Off 5th Avenue, and Bass Pro Shop a few years back, but the place is still at least half empty. We went there just to walk around. I won't say that it was very scenic, but it was nice to just take a walk together. I found an amazing pair of shoes at Off 5th, the fashion find of the year for me, I think. And my husband talked me into buying a leather jacket. It looked nice on me, and it was so sweet of him to find it, get me to try it on, and talk me into buying it. It was also uplifting to look in the mirror and see that the jacket looked so good on me. I don't spend much time feeling that I look good lately.

So even though it was a rough day in a growing line of rough days, I still had a great time. My husband gets all the credit for this one though, if I had been left to my own devices, I would have stayed in bed in a ratty t-shirt. So thanks, honey, for sticking with my sad self and reminding me that while I can't do everything that I want to do right now, I can still have fun.

Saturday, October 13, 2007

Vocab

I've been thinking about the word "deserve" a lot lately.

Usually, I hear that word when someone is trying to justify a purchase that they can't afford. I have heard it all. "I work so hard, I deserve these $400 boots", or "I deserve this vacation" or whatever. I have never understood that mentality. If you can't afford it, don't do it. The way I look at it, I don't deserve to be crushed under a mountain of debt.

I also heard my mom use that word. Toward the end of her life, when she was really suffering, I heard her ask what she had done to deserve this. That really struck me. She was a wonderful person, and from the outside it was so clear that she did not deserve this suffering that I could not believe she could even think that way.

I understand it better now. Sometimes, for a moment, I will wonder what on earth I did to deserve what I'm going through. I always snap out of it and realize that adversity does not get dished out that way, and that EVERYONE faces their trials, it is truly part of the whole roller coaster of being alive.

You know how some languages don't have a word for something? I think our language might be better off if we did not have a word for "deserve".

Why is the last mile always uphill?

It's getting fairly grim around here.

The burns hurt all the time. The creams keep it at a tolerable but annoying level.

When I have a hot flash, its stings like crazy because I'm sweating on burned skin. Then I get cold, and that hurts too. The skin is so sore that having my headlights turn on is painful.

And of course, the discomfort drains me and makes me even more tired. At this point, I'm truly amazed that I can be MORE tired. We are getting down to a pretty fine level of degree here.

I only have one more week to go, believe me, that has become my mantra.

My husband was very perceptive when we were talking about this this morning. He understand that having this come at the end of treatment is both harder (because I've already been knocked around so much and for so long) and easier (because I'm so close to the end of this all I have to do it hold on a little while longer). He said that to him, this last six months has looked like one long extended bar brawl. That made me laugh. I do feel like every time I get up, I get punched in the face again.

Maybe that's why I enjoyed watching Rob Roy so much a couple of weeks ago. Normally, I can't take violence, not even movie violence very well, so I avoid movies that are known for it. But I enjoyed this film. I admired his strength and scrapiness in the face of adversity.

Friday, October 12, 2007

X Marks the Spot

I had to go back to the radiologist's this afternoon. One of the brand new stickers already came off. It was on my rib cage, right under my scar and my bra rubbed it right off.

So I went back and they put two other stickers on in a different area, hoping that will work better. They also gave me a Sharpie and a strip of the round stickers that they use. If any of the new ones come off over the weekend, I'm supposed to darken the mark and cover it back up with a sticker. My chest looks like an angry treasure map.

My old stickers can come off now, but I'm not supposed to take them off in case they tear my skin! Ewwww. So I have to let them wear off on their own.

The radiology tech said that when I'm home, I should wear a cotton tank top with no bra, and tuck the material up under the girls so my skin does not rub against skin. Yow! You have got to be kidding me! That sounds horrifying. I thought the muu muu that I wore after surgery was a tough look to pull off!

So I told my husband in the car. He thought it was funny.

Preparing for boosts and wisdom teeth

Busy morning!

First I went in for radiation as usual. Today was my last full breast treatment (and in the nick of time too, the skin is so red!), and at the end of it they prepared for next week's booster treatments. They had to put the table in a different position. This time, the machine is positioned directly above me, looking down onto my chest. They add this plastic "tower" thing that slides into the machine, extends about a foot, and has a plate on the end that defines the area for the beam.

Since the machine is facing straight down, I asked them if my lung was going to get radiation. They said that the electrons from this beam are tightly focused and will not penetrate that far. Huh.

Then I had to go straight to the oral surgeon's office for my son to get his wisdom teeth out. He had to get all four done. It didn't take very long. He is home now, resting in a nest of comforters, pillows, cats and ice packs, and playing video games with this brother. His little brother was really sweet, he rushed upstairs to get pillows, blankets and stuffed animals so his brother could get comfortable. And he keeps offering to make him some soup or pour him a soda. They want him to drink carbonated drinks for some reason, so my husband ran out to Kroger's to get 7Up and fill his prescription.

So that's our plans for the weekend, take care of the tired, burned one, and take care of the one with the puffy cheeks.

Thursday, October 11, 2007

Hat Check

My last chemo was August 13, so I'm about two months out from it, so what's going on with my hair by now?

My eyelashes are filling back in. I only noticed because when I put mascara on, I can see that I have a bunch of short lashes that are only half as long as my regular ones. These are the new ones growing in. I lost more lashes than I realized, I'd say more than 50% are are the short ones just coming in.

My eyebrows are filling in too. I have been using pencil and powder to draw them in this whole time, and for a while there, I had to use my magnifying mirror to find the remaining few light hairs so I could follow my natural brow line. Now, even without pencil, you can tell I have brows, they are faint, but they are there.

How bout my head? Well, that's interesting. You can see progress almost daily. If I run my hand over it, it feels thicker and I can always feel a few new sharper hairs growing in too. But, you still see more scalp than hair, I still need to wear a hat, and if you look at me from a distance, I still look bald. So while the progress is very encouraging, the end result is unspectacular. And how, just how can you see progress every day, but no end result?

What else is going on? Well, my breast looks a little worse every day, I'd describe it as "scalded" now. That bugs me so much. I've avoided sun exposure all my life and now I'm getting the equivalent of a solar fly-by on one of the girls! I do realize that it will heal quickly once I stop getting my daily dose (next week is my LAST week of radiation!), so I'm not fretting about it all that much, I just hate to see it.

My back is all better. I was having a real problem there since I started radiation. I was breaking out on my shoulders and down my spine, and my skin felt like leather. It was very itchy too. I showed it to my radiation oncologist and she didn't know what it was. I bought a couple of nice body butters (got them at Walgreen's - Alba Papaya Mango body cream and Yes To Carrots C Throught the Dry Spell Body Butter, both paraben and mineral oil free, both very reasonable, the Alba one smells very tropical) and my poor teenage son has the job of rubbing lotion into my back every night while my husband is gone. It worked! My back is totally normal and happy now. I think what happened there is that I changed my shower habits, I have to protect the marks on my front from getting too much water now, so only my back gets the spray and that change was enough to dry my skin out.

I'm am still very tired. I've stopped getting any exercise at all. I'm not even trying at this point. I have faith that will improve as soon as radiation is over too.

The crochet project is progressing too. I abandoned my first attempt after it literally got tied in a knot. Oops. Don't even know how I did that. Then I started a second one. That looked better, but I noticed that the sides were getting narrower row by row. Huh. OK, threw that one out too. Started to wonder if I all I was going to do here is waste yarn! However, I am proud to report that try number 3 is looking good!

My husband gets home from Italy this afternoon. He told me yesterday that he bought a couple of bottles of very expensive wine. I think I might just open one, drink right from the bottle, and refuse to share it! LOL

Wednesday, October 10, 2007

My First Crochet Project

I saw prayer shawls, vests, a toy bear and socks in progress last night. Making a sock looks more complicated than brain surgery, so I'm a little surprised that wearing those things ever caught on! I'm pretty sure it took the threat of freezing to death to motivate someone to figure it out in the first place.

My niece and I went to the Knit One, Heal Two meeting last night with a friend of mine who is also going through breast cancer treatment. I've been to a couple of other meetings in unusual locations, but this was my first time in their regular meeting place. My niece and I were so eager to get started on our own projects. I had crochet hooks that my friend in Florida sent me, the group gave us some yarn, and my long suffering friend settled down to give us lessons. Since she is still going through chemo, I'm not sure it's fair that this duty fell to her! I don't know where she found the patience.

My first project is a wine colored, crocheted scarf. My niece is making a scarf too, but hers is gray. We learned the single and the half double stiches. Yes, I think 2 half a doubles should equal a full double, but that's not how it works.

I felt like a total spaz as I tried to learn. I could not get my fingers right, I was keeping too much tension on the yarn, so it was a struggle to the death to get the hook through. I think I'm getting the hang of it though. I was so tense about it while I was trying to catch on that we were joking that I was going to hyperventilate.

I am now the proud creator of a wine colored strip that is about six inches long and almost two inches tall. Parts of it look pretty good, parts of it have unexplained protrusions. I had to unravel my very early attempt because what was supposed to be a straight line took off at a 90 degree angle! The thing just made an abrupt turn. Huh. Yarn can be very sassy.

Sitting in that room (it is in an old house that is now property of a church), in a circle of people happily working on something that they want to give to someone they don't even know, and chatting and laughing and eating (pumpkin pie last night since we were celebrating a birthday) is enriching and magical. It creates a sense of service, of purpose, and a supportive community. And it slows you down. You are not rushing to get somewhere, you are not taking two phone calls at once, eating while driving, or facing a full e-mail in box, you are sitting, enjoying people and methodically, unhurriedly doing something nice for someone.

Tuesday, October 9, 2007

All for Nothing

Well, my meeting was cancelled just hours before it was supposed to happen, so I went in for no reason today. Sigh.

Normally, I'd be glad that I made it in anyway. I saw some people and used the time to print out a few things that I can work on from home. I have a couple of printers here at home, but it is nice to use the high speed printers at work for large documents. And I saw my boss in the hallway and we decided to change the next project that I'm going to work on, so that was good.

But I'm too tired to go in unless I really need to now.

The skin on my chest looks burned. I talked to the doctor and she said that it is exactly what they expect to see and what they want to see at this point in treatment. I understand where she is coming from, she wants to make sure I get the most effective dose, and of course, I do too, but I'm still very upset over how my skin looks. I feel sorry for it! Hasn't my body been through enough yet?

You can see a pink mark that starts at my armpit and goes across the top of my breast, and each of the pores on my breast has turned into a red unhappy looking dot. I feel more like a plucked chicken than ever.

I'm going to go slather some more cream on it.

Long Day Ahead

I went to sleep around 10 last night. And woke up at 12 with a hot flash. I got back to sleep in about half an hour.

Then I woke up with another one at 3, and I have been awake since then. I really wanted to get back to sleep, so I didn't read, or grab my computer. I just stayed in bed in the dark with my eyes closed. You would think I could get back to sleep out of sheer boredom!

So I was awake for the hot flash that came at 6.

I'm starting to think about keeping a diary of how the night goes, except I can't think of what I would do with the information. I'm not sure I really want to know who few hours of sleep I am getting, or how often I hot flash.

I'm going in to the office today, and I need to hang in there because I have an important meeting at 4. Though it will be a long day, it will also go by fast because I have so much to do, and I will enjoy being in the office and seeing everybody. So maybe I won't find it that tiring after all.

I am hearby promising myself a nap tomorrow.

Monday, October 8, 2007

On Pins and Needles

I tried acupuncture for the first time today.

I already knew this lady!! I met her when the Argentine Bean (local tapas restaurant - I'm so proud of us, we have a tapas place in Kentucky!) had an outdoor sangria festival last May. I think I was all done with my surgeries by then, and chemo was just around the corner, but had not started. I still had my hair.

My husband and kids came and we met some friends there. We had dinner with them first and they are wonderful people, so it is a very happy memory for me. No kidding when I look back on it in my mind's eye and see them across the table from me that night, there is a golden light shining all around them.

We spent most of the time at the festival getting airbrush tattoos. My husband had shaved his head in my honor, and he got a multi colored sun on the back of his head. I got a hibiscus on my leg. I loved it and had such a great time.

So I met her there. She and her husband know my friends, so we were introduced briefly. Then I saw her again when she gave a talk at the breast cancer fair (while there was great information there I still just hate being on that mailing list) at the local hospital.

And now I've met her again. Sure sounds like this was meant to happen.

Anyway, she started out by asking a lot of questions about what I've been through and how I feel physically and emotionally. I was very encouraged by her interest in my emotional welfare.

She explained the procedure, then I got up on a massage table. She let me touch one of the needles first, they are so fine that they bend at the slightest pressure. She put about 15 needles in (so she said, I didn't actually see any of them). One was on my scalp, one on my forehead, a few on my upper chest, some on my belly, some on my arms, legs and feet. While I could feel what she was doing, it did not hurt at all. Then she put this little warm pot with herbs in it on my tummy, covered me with a sheet and left me there for 20 minutes.

I spent the time trying to consciously relax every part of my body. That didn't go so well. I found this knot in my stomach that I just could not undo. But I did spend the time breathing and trying to relax, so hey, that's worth something. Also, it is a colonics place and every once in a while I could hear water rushing through the pipes, when I put two and two together, I would involuntarily wince a bit when the water ran! LOL I could not forget what might be going on in another room! Curse my vivid imagination!

Then she came back in, took the needles out and told me what kinds of things to expect. It could make me tired or sleepy (boy did it make me sleepy, I would have loved to take a nap! But I worked instead.), it could make me weepy, but how would I tell, that happens a lot right now anyway. It could also start to help with my sleeping problems, energy level and hot flashes. She said the effects are cumulative as my body learns from each treatment, so any relief that I got right now would be short term, but the good effects would last longer and longer after each treatment. I'll be sure to let you know on that.

Then I headed home. I live pretty close by, so I was home and standing in front of my kitchen sink about ten minutes later when I realized that I was completely relaxed!! Almost drugged kind of relaxed! It was terrific. I've felt relaxed and calm all afternoon.

She recommended that I come every week for six to eight treatments, then we'll talk about it and see what we should do from there.

No problem, I'll be happy to do this again.

And the Cleaning Continues...

The kids were both gone for a few hours yesterday.

One was at a birthday party at the Renaissance Festival, the other was volunteering at the local hospital.

I had grand illusions that I was going to spend that free time working out, polishing my toes, paying bills, and liberating non-democratic countries. I can be very unrealistic about what can be accomplished within a given amount of time. Clearly.

Instead, I came home and cleaned the kitchen. I cleaned out the utensil drawers. They have really been bugging me. I have two utensil drawers and both have Rubbermaid plastic trays held down with sticky wax. Over time, those trays get dirty. Where all those crumbs and debris come from when you only put clean utensils in there is a mystery to me. So, I took everything out of each drawer, vacuumed the empty drawer, washed the trays and made everything prove its worth before I put it back in. I threw out some things that I can't even identify. I'm pretty sure there was a temperature probe in there from my Mom's old microwave oven. It was a Litton, bought when microwaves were brand new. It was roughly the size of a smart car. When you bought it, it came with a cooking class so you could learn how to use it. I still have the old hard cover recipe book that came with it. I can remember Dad cooking scrambled eggs and marshmallows (um, not together, of course. If you cook either on the pulse setting, they will expand at first, then start to pulse and look like they are breathing, we all thought that was hilarious and could not get enough of it). That thing was great entertainment.

Then I tackled my kitchen desk. It was piled about a foot high with coupon books, school papers, pictures that needed hanging, and just general stuff. I got the pictures hung (I'm very proud of that), and cleared out everything! I can see the desktop now. I moved the Bose iPod dock that my husband bought me last birthday on to the desk so I can rock out while cooking and cleaning now.

Yeah!! I can sit at the kitchen table without wanting to set fire to the crap on my desk.

My husband made an acupuncture appointment for me today. The office is in a colonics place. Huh. She came highly recommended so I'm not overly worried, but I will make very sure they know which service I want! Eeek.

I'll be sure to post how the appointment goes.

Sunday, October 7, 2007

Cleaning House

I get overwhelmed by house work.

I kept up well when it was just my husband and I. Started to slip a bit when we had our first kid, slipped more when we had our second, and got buried under the avalanche when I took my current job three years ago.

In the best of times, there are piles of papers and unripped CD's all over my office desk, you can't even see the kitchen desk, and there is probably laundry all over the dining room (which is at the front of our house, right by the front door, so how tacky is that?! One time a male neighbor dropped by and stood in my foyer for a while while we talked. Only after he left did I realize that there was a drying rack behind me the whole time, nicely decorated with my bras and lacy thongs! He did an amazing job of not reacting.)

So you can just imagine what chaos has ensued since I have been going through treatment. We've lost the wood floor attachment to our vacuum cleaner for months, the kids are leaving their clothes in bins on the floor downstairs instead of taking them upstairs and putting them away in their rooms, and there is stuff everywhere!

Mostly I've done my best to ignore it since I knew I needed my energy and focus for getting better and for essentials like working and making sure people are fed. And we do have a weekly housekeeper come in, so toilets and bathrooms are scrubbed, and vacuuming and dusting does get done, though not to the same standard as I would.

But yesterday, I took my first step toward taking the house back. I cleaned up our sun room. It is a small room, surrounded by windows. We have packed a sofa, chair, TV, treadmill and DVD cupboard in there, not very successfully. Well, with the kids help, we moved furniture around until we found a better way to squeeze the treadmill in, re-hung a painting that had fallen to the ground, sorted the DVD's and video games that were piled around the TV, re-potted the poor aloe vera that lives there and really needed some attention. We even vacuumed the vents. I also unpacked some of our Halloween boxes and got started on a little decorating.

I had to take a few breaks, but it felt so good to get one place tidy! When we finished, I sat there on the sofa, sipping water, watching the birds at the feeder (chicadees, gold finches and sparrows mostly), and looking through a stack of magazines. I hardly ever take time to just sit and browse through some magazines - it felt decadent! And I could relax, because I was sitting in a room where I could look around and not see one thing that needed to be done.

Saturday, October 6, 2007

With a Little Help From My Friends

As you know, yesterday I was one sad minkey.

Toward the afternoon, I got an e-mail from a close friend that works with me. She and I share obsessions for beauty and fashion. We just about run to talk to each other when we get a new catalog in the mail from Sephora or Saks. I don't buy much as a rule, because I am always watching my budget, but I still just love to go look and I go nuts for samples. We are addicted to Bath and Body Works coupons too.

Saks has a beauty event right now. If you spend a certain amount, you get a bag with samples, and some of the counters throw in a little gift too. We have both made it to the last two events. We were supposed to go together this Thursday after work, but I was too tired so I had to cancel. In the meantime, I enjoyed the catalog and tried the sample of the new Versace fragrance. It smelled great on paper, but smelled like bugspray on me! Bleh. We both laughed about all the money I was saving on that one.

Well, as I said, she sent me an e-mail yesterday afternoon. She asked me if she left work a little early, could she drop by to leave some food that she had made for us, and if I was up to it, she would drive us downtown to go to Saks together.

That cheered me up enormously, and finally got me into the shower.

So she dropped off two dishes of "Pizza Pasta", and another surprise. We have this friend at work who wins the cornhole tournament every single year. I call him "The Dominator" since he and his partner rarely allow the other team to score at all. Most years, the winning prize is a cornhole set. Another colleague of ours owns the shop that makes them (http://www.cornholeshop.com/ if you would like to support his family run business or your curiosity about the game needs to be satisfied.)

Well, he sent me a cornhole set as a surprise!! I really wanted one, but with two kids to put through college, I could never bring myself to spend money on it (silly what I will and won't spend money on, I know.) The winning prize this year was a day off from work, so I don't know how he got the set for me, but he did. I am so delighted by this gift! I will always think of him when I use it of course, but there are many nice evenings left to us before the weather turns cold, and cornhole is something that I can do with the kids even while I am recovering. It is a game that requires just enough energy to hurl a bag of corn (and typically, hold a beer in the other hand for ballast, a classic position seen in backyards all over the tri-state), I can't wait to get outside and play it with the kids.

So after we got all the goodies unloaded from her car, my friend and I headed downtown. She is a great conversationalist, so we just chatted back and forth like crazy the whole way. We always do. We started at the perfume counter. She picked up the new Pucci fragrance (try it, it starts strong, but settles down and smells very nice), and we found the perfect birthday gift for a friend of ours who has a birthday this month. So I grabbed the gift and headed to the Kiehl's counter to add a few little things for me. Turns out I bought more birthday gifts instead for another friend who has a birthday this month. She is going to love it!

Well, the lady at the Kiehl's counter complimented my hat (many people at the store did) and asked where I got it. When I told her, she told me that she is a cancer survior too. She was delightful. She has been healthy for two years now. She went to the same cancer center that I am going to.

She had colo/rectal cancer, so she was so funny about comforting me. She said I know it had to be hard for you to show your breasts to every one, but imagine me, I had to show everyone my BUTT!!! I just loved her. She talked about going through surgery and chemo and radiation, which made her start gushing about how great the radiation ladies are. And they are amazing. She gave me her card so I could make sure I got her name right when I say hello to the radiation ladies for her on Monday.

I just loved meeting her.

After that, we went over to the Juicy Couture section to buy "Viva La Cure" T-shirts. While we were there, my friend asked do you mind it when people ask you a lot of questions and tell you all about their experiences with cancer? My answer was nope, it usually warms my heart. The only time I get annoyed is when people tell me what to do. You will not believe how many people bark out orders to me like "watch comedies!", "get your rest!" or whatever. You will be amazed how aggressive some folks will get with their advice. I also don't appreciate one colleague that I have who loudly discusses my condition in front of customers. That really bugs me too. I don't like to be "outed" like that. I am very comfortable discussing it all with my friends and co-workers, but I don't see any place for it in a business setting.

The Kiehl's lady (who I truly hope I run into again, she was delightful) also gave me a tip. She said right after radiation, use a cotton ball to apply milk of magnesia. The Chanel lady did that and her skin did not burn when she went through radiation for breast cancer. My skin is starting to burn, so I will try this remedy. I can't see any harm in it, and it might help.

After my friend dropped me off at home, she stayed to share a glass of wine on the patio. That was wonderful! We just sat outside in the evening air, surrounded by flowers and sunshine, sipped our wine (a white that I am very proud of, it tastes amazing and is under $10 a bottle, I give it to all my friends) and talked. I swear I could feel my heart just soaking up the nourishment from having such a great time with her. I felt more relaxed than I have in weeks.

I'm really looking forward to wrapping the gifts for my friends (I got new wrapping paper on sale at Borders, and it is fabulous), and trying my new samples. I think I will use the bag to carry my supplies when I start making chemo caps for other people.

My niece also came over last night. She was here when I got home. We had dinner together, talked about how to start making caps for other people, she is as fired up about the idea as I am, and watched a Jeff Dunham DVD that she brought over (he is pretty darn funny if you have not seen him), and she put the kids to bed because I fell asleep before the show was over.

So, thanks to the kindness of friends, family and total strangers, I ended up having a great day.

Friday, October 5, 2007

Leaving on a Jet Plane

Work yesterday turned out to be hard on me.

It started out fun. My brother sent me a big box full of silly string. There was enough for the boys to enjoy a ton and for me to have a few cans too.

So I brought three cans into work and the two girls in my department went outside with me and used it on a grassy area behind the building. It would be pretty hard not to laugh like a looney while you've got a can of silly string.

Then we went back in and I had a ton of work to do. It was very hot outside, and I headed outside a couple of times during lunchtime to watch my friends play the Amazing Race and Cornhole (if you are not from around here, let me assure you that is a game played with boards and bean bags, not what you might be thinking) because it is United Way week at work. It was also hot inside. So I sweated like a beastie the whole day. It was hot enough that I had to keep my cap off a few times. A couple of my colleagues made some rude remarks about my bald head. I don't think they meant to hurt my feelings, but they did anyway. I think they were just trying to use humor to deal with the situation, but I gotta tell ya, some things just aren't funny.

I got everything that I had set out to do that day accomplished which was great, but I think all that being overheated really wore me out. I was a wreck by the time I got home. We went out to a new (new to us, don't know why we didn't try it before) Thai restaurant for dinner and I perked up a little when I had some food. Then I came home and went straight to bed. I didn't even stop to put creams on my chest or to wash my face. For me, that is a sign of the Apocolyse. I don't go to bed without washing my face.

I'm still tired today. So tired that I have not made it into the shower yet. Yuck. That used to be an impossiblity, but it has happened to me a few times through surgeries, chemo and radiation. Sometimes, I'm just too tired to drag myself into the shower.

And I just dropped my husband off at the airport. He is flying to Italy today. Without me.

Before you starting thinking what a cad he is, let me explain.

He went to Italy for work around this time last year. He begged and pleaded for me to come with him. He found out about it without much notice, so I was not comfortable going. I felt I had too much to do here for the kids and work, so I stayed and he went. He loved Italy and wanted to go right back. So we decided right after he got home that I would go with him on the trip this year.

But I can't. I'm still doing radiation. So my husband cancelled his plans to go on the trip this year too. Then a customer of his who is a handful said he was going on the trip, so my husband arranged to go and do damage control. (After asking me if I was okay with it, and, at the time, I was.) Then the customer backed out and it was too late for my husband to get a refund on his tickets. So my husband is not being mean, he is as trapped by circumstance on this one as I am.

I told the radiation ladies today how sad I was that he was going and I was being left behind. They said I should have told them, and that I could have taken a week off from treatments to travel. I did not know that, but it would not have changed my mind if I did. I don't want to go while I'm this tired, and bald and knowing that I would be coming back to two more weeks of radiation.

I would rather go some other time when I feel great, and when I have all these treatments behind me.

So I understand why I'm not going, I know the choice not to go was mine, but that does not stop me from being sad about it.

Thursday, October 4, 2007

Uppity Port

Last evening, when I undressed, I took the little bandaid off my port. The front of the port had felt a little pinchy all day. When I looked at it, you could see a circle that was about an inch or so bigger on all sides of the port, where my skin had gone white, and the circular edges where the port pushes out against my skin were pink.

The spot where the needle went in looked fine, and I felt fine, so I decided not to do anything and just take a look at it this morning.

Now it looks normal. Huh. I guess is was just irritated from being accessed, or the alcohol, or the numbing cream, or something. I spend a lot of my time lately being irritated, so I know just how it feels. :-)

I also talked to my friend who makes my hats and she is going to make one for the lady that I met yesterday. That just made my day. It takes her about a week to make one, and she is going to give me lessons so I can make them too. We are trying to figure out how to make them faster. We would like to find a way so that everyone who asks me where I get my hats can have a few of her own, and we can donate some to locate doctors offices and agencies too.

Last night as I was settling down and watching a Smallville DVD with the kids, I started alternating hot and cold flashes. I had cold flashes last year before this all started, but they have changed now. Here's what it feels like: First I get a hot flash, that means that instant sweat pops out on my scalp and the middle of my back, and I feel like my upper body is in the blast from an open oven door. Since I was raised Catholic, I also sometimes get the sensation of feeling guilty or embarrassed at the same time. I think I'm programmed to think that if I'm flushing, I've done something wrong! LOL During the hot part, I throw off the covers and turn on a little fan on my night table. Then awhile after the hot flash has receded, and I've turned off the fan and am eyeing the covers with thoughts of tugging them back up, I get the strangest sensation, it is a wave of cold that also has tingles under my skin, deep under my skin. I haven't felt anything quite like it before, but it is a little like the tingle that your skin feels if you go outside on a snowy day, except it is an internal sensation, not external. So then, I need to huddle under the covers until it passes. It's like having an internal York Pattie.

Strange.

Annoying, but I must admit, also funny.

I'm off to work now, I need to go into the office to finish up a few things.

Wednesday, October 3, 2007

Tight Squeeze

Oh yeah, I forgot to mention.

The lady that I met today? Her cancer was found in a routine mammogram. It was a total surprise.

So was mine.

So if you are a woman and you have stumbled on to this blog for some reason, and you are overdue for your mammogram, pick up the phone now!

If someone you love is putting it off, remind them.

I came dangerously close to skipping mine this year. I've had so many others that showed no problems, and I was very busy and I couldn't see the harm in skipping just one year. Thankfully, I caved and made the call when they sent me a second notice.

If they find it early you have so many options and such a good prognosis.

Don't let anything stand in your way of doing this for yourself.

Feelin Flush

After radiation this morning, I went in to get my port flushed for the first time after chemo. I'm supposed to do this every six to eight weeks to keep it in good working order.

It was nice to be able to walk back to the chemo suite and not need chemotherapy. It was so different. I was by myself instead of having a family member with me like I did for each treatment, when I was in the little waiting area, I could concentrate on my magazine (National Geographic article on alternative fuel sources), and while I was having the port flushed, I could relax and just enjoy talking to the nurse. I'm glad being in the chemo suite didn't bother me. I've read about people who get nauseous just seeing the chairs or seeing their oncologist. The memory is still that vivid and physical for them.

When I think back on it, I do definitely remember the discomfort and the fear, but I'm soothed by also remembering all the great people that have helped me and how lucky I am to be doing so well. I feel more gratitude than horror. At this point anyway!

The nurse was very kind and did a great job of helping me through it (even with the cream, it still hurts), so as weird as it sounds, it was a very enjoyable visit to the oncologist's office.

While I was in the waiting room, a woman came up to talk to me. She is a five year breast cancer survivor (she looks terrific by the way, and she has gorgeous hair), and her daughter is currently being treated. She walked up to me while her daughter was already back in the office somewhere, to ask me where I got my hat. I'm wearing my new black pom pom one. She wanted to get one for her daughter. She gave me her name and phone number and I will talk to my friend who makes them to see if she would be willing to make one for someone else.

I think you may have to be a woman, and you may have to actually lose your hair before you can truly understand how devastating it is. And how very comforting it is if you can find a cute, fun way to deal with it. In addition to my collection of amazing hats that my friend has made for me, I have a new one. A friend found it at an art fair over the weekend. It is knit of fuzzy, soft, blue yarn and at the crown it has a kind of tassel made from thick cord. I love this hat too. When I turn my head, I can feel the tassel move and it almost feels like having a pony tail.

Then her daughter came back into the waiting room and we talked for a while about our diagnoses and treatments. She is halfway through 8 chemo treatments. And she had a double mastectomy, so she has really be through a lot. Her mom was telling me all about her experience five years ago and about what he daughter is going through now. They were terrific, and I enjoyed meeting them. It was wonderful to see their devotion to each other too.

Panic at the Disco

I flew into a bit of a panic last night.

During the afternoon, my husband called. He leaves for Italy this Friday and will be gone for a week. He called to say there was a chance he might need to say over the next weekend in Europe so he could go to Finland. We joked about it, and I said since those were my last two weeks of radiation, he was going to have to pick a country, and get back home already.

By evening, I had looked at a calendar and realized that he would be gone over two weekends, and most of my last two weeks of treatment. I panicked! I have already pared my expectations down to the essentials. All I plan to achieve while he is gone is that the kids with be fed, clothed, and where they need to be for their activities. I'll continue to work from home. I won't take on anything else, and by "fed", I will accept having my 16 year old son drive us through EVERY NIGHT if that's how it needs to be.

But I may not be up for our usual weekend chores. We pay bills, grocery shop, and do all the laundry on the weekends, and since I've been in treatment, my husband does the shopping and most of the laundry.

So I hustled the kids right over to Target. We bought loads of socks and underwear, and few more pairs of pants and tops for both of them. My goal was that they could have fresh clothes every day for school for two whole weeks even if I did not do one load of laundry. I don't think I quite made it to that level, but they should be able to go for more than a week now which gives me some leeway.

My 10 year old needed to try stuff on, so I sat on the floor outside the dressing room, leaning against a pole (which felt great, it was cool metal, and of course I was hot flashing) until he was done.

I drove myself through Burger King for a veggie burger on the way home. I had not taken time to eat dinner because I wanted to get to Target before I ran out of energy.

When my husband called later, he was so upset. He said it broke his heart to hear how worried I was and that I was making preparations to try to cope without him. It made me sad too.

He thinks he can get out of the Finland trip, and now he is sorry that he even mentioned it to me. It has been very hard for both of us to balance work life and home life while I've been going through this. Work is great because it gives us purpose, distraction and income, but it also brings pressure and obligations that can be very hard to meet.

When you go through all these treatments, you feel weak and vulnerable, and it doesn't take much to make you go into a tailspin.

Tuesday, October 2, 2007

Back on Track

I'm feeling much better!

My energy is back, and my skin has settled down too. I think the creams that I am using might have a cumulative effect, because I have not had a day as bad as Thursday was since I started to use them. Or maybe my skin is just happier because I did not get radation for two days over the weekend. The doctor also recommended that I add Benadryl cream to the mix. I ended up buying the spray instead (the only paraben free option), and I'm using that in the evenings since that is when it seems to flare up.

I did some research over the weekend. I searched for blogs of people going through radiation. I found many. I was looking to see if other people described the pain that I felt, and what they did to help themselves through it. I did not find any information on that, but I did find plenty of interesting stuff.

One lady ended up writing a blog about her cancer treatments for a living! Huh. She also ended up writing for Beyond magazine, and her blog said that they were going to stop publishing after the third issue. She was sad about that.

As someone going through treatment, I hated that magazine. I thought it was depressing and that they made statements that were cavalier and not based in fact. In particular, I remember an article casually mentioning that going through chemo ages you by at least 10 years. Really? In what way? What ages by ten years? Cognitive function, bone mass, muscle tone, circulation, what? And which chemo drugs specifically? Taken in what doses and for how long? They made that shocking statement like it was well accepted fact and didn't back it up with any evidence or explanation. While you are struggling to cope with your diagnosis and treatments, the last thing you need is unsubstantiated negative information. I was offended both as a patient and as a person with a brain.

Anyway, her blog was very interesting. The machine that she had for treatments required her to blow in a tube and hold her breath so the beam would miss her heart. She said sometimes that was very difficult, until they found a problem with the tube. She also had a picture of the marks on her chest. She was tattooed a bit, and her sharpie marks looked like big multi colored slashes all around her breast. Mine don't look like that at all. I have a x's on my sides, and a series of small slashes, one X and an L on my breast. Funny how much treatment and equipment vary from place to place.

So when I saw the doctor yesterday we talked about last week. If it gets bad again, she will give me a pain killer, but for now, we are going to stick with the creams. I also asked her to verify that she was able to block my heart out for treatments.

This is where it gets cool. She whipped out my cat scan. The picture was as if you were looking at a cross section of me at the level of my shoulders. I could clearly see both lungs, my spine, and my heart. Over the left breast, I could see all the different colored lines that represent the fields where I am being treated. It was fascinating! They are able to keep my heart out of the beam, though it does get some residual radiation just from being so close to where the beam does go. They skim the front surface of my left lung. It is a shallow portion. She also showed me a series of x-rays that showed a side view of where the radiation goes. You could see how the aperture varied in order to protect the organs in my chest. I liked the cat scan so much I almost asked for a copy! What incredible technology.

After my appointment, I went in to work and had a great day. I am very relieved. So far, I have been told that if radiation makes you feel bad, you will stay feeling bad until treatment ends - so I was thought I might be in for a few rough weeks. I'm interested to see if I start feeling bad again this Wednesday like I did last week, or if I'll stay feeling good.

I also forgot to tell you about something sweet. Last Friday was my roughest day. As I said, my husband was very worried when he saw me struggling to get ready to leave for work. I did better than I thought I would all day, but I still felt crummy and it was still hard. When I got home, and walked in the back door, there were both my kids and my husband, smiling, holding roses and a musical card and shouting "Happy Half Way Day!!"

The roses (white and red) are on a dresser in front of me as a write this. Every time I see them, I smile and remember that moment and how much I am loved.