carolyn's cure

Day 100 Free from cancer.

2006-12-04T05:36:00.000-08:00

Declared Cancer Free by your Dr. and feeling Free From Cancer.

When does this happen? I will have follow up appts. for the next 5 years, which include CT scans and chest xrays... I imagine that waiting for these results each time will be stressful.

Even when you are cancer free, you are never free from cancer. (Remember, no one is free from cancer). Cancer happens and it is really out there. My memory is already fading of my daily trips to the center. My life has quickly gone back to the old normal routine with the new old me. I am the same and I am very different. I have the fading memories (and a lot of turtlenecks and scarves).

I am quite sad to be writing this entry. I am still amazed that I made it through all 100 days with something say. I am going to try and keep up the blogging, so in the future you can check in with me at Teddy's House. (see the link to the right) It is not about me, it is about the kids and our life, and not really as interesting. I started blogging last year as a way to becoming a writer, and I didn't make it very far. I can assure you that I will not be making daily entries, but I will set a goal to make at least one entry a week, and let's see how it goes.

Thank you to everyone that has been reading this and keeping up with me. This blog has given me a tremendous sense of community, that there are people far away that check in to see how I am doing. I really appreciate the words of encouragement and the emails from everyone, please continue to check in with me.

Day 99 Remembering the Journey

2006-12-03T10:10:00.000-08:00

I think that these 100 days have given me tremendous insight into another world. I have been blessed with an incredibly healthy family and friends. I haven't even had anyone really close to me die, and I have no experience with long term illness. This has been my glimpse into what it is like to feel awful and still have to go through the day with your kids.
I also have an appreciation for friendship, and how each of my friends showed me a different side of them. Some of them still need to hug me every time I see them. Some of them cried every time they heard my whisper on the phone. I have a renewed energy for being a full person. I mean full in the sense of making each day positive, mostly for my husband and kids, but also for the rest of the world. I don't want to think that I went even a few hours without reaching out to someone and sharing and being a friend.
On my 40th birthday earlier this year, I was sure that this would be my best year yet. A few weeks ago, at the height of my misery, I was pissed at what a bad year this was turning out to be. But now that I am healthy and healed and happy, I can look back on the 100 day journey and see it for the positive things that I can take away.

Day 98 Holiday Cheer

2006-12-02T14:00:00.000-08:00

I could not have asked for better timing for this whole "chapter". (although it did kinda' wreck my summer). I randomly picked 100 days back in August, not really knowing what was going to happen, and what my health would be like in December. I did skip Halloween and was quiet at Thanksgiving. I am ready for Christmas. I am ready for my holiday decorations and lights on the bushes and a christmas tree.
At the same time, now that I am feeling better I realize how much life just goes on. My kids still know very little of the details of my diagnosis. I am glad that I made the decision to keep this all quiet and in the background. Now that I am truly moving on, I am glad that the kids will not have this to worry about. I am also running out of excuses to stay home at night. I will have to make some decisions about which committees I officially retire from. It is easy to "retire" when you haven't been to any meetings for a few months.

Day 97 Red Rock

2006-12-01T09:33:00.000-08:00

I have started to make it back to the gym.. I am back on the treadmill and back to my weight training. I get weighed in next week at my Dr. (seeing the ocologist one last time) on the scale that they weighed me each week. I would love to be back to my "bikini weight". I know that it is not really important what my weight is, or the number on the scale, but it is a sign that I am back and in control of my life again. Being at the gym makes me feel incredibly healthy and strong.
My neck is still pink and itchy and when I am on the treadmill sweating, it gets redder and redder - kinda' funny.
I have a red rock on my desk, given to me by friend M. just as I was starting the radiation. I only have a few things to remind me of these 100 days. Of course, this journal. I have been copying it into Word, so that I can keep it. Maybe some day when I am feeling sorry for myself I can reread the entries and remember what a great life I have and great friends and family.

Day 96 Pay it Forward

2006-11-30T13:26:00.000-08:00

You may have heard this expression before, or seen the movie of the same title. Pay it Forward is the idea that you do something helpful/wonderful/deserving for a stranger. You have created good from nothing, and for no specific reason. If everyone "pays it forward" then we will all make the world a better place.
I think that when anyone has been helped through a difficult time and had to rely on friends and strangers, they come out of the bad time with a need to return the favor.
I haven't quite figured out what my pay it forward act will be. I have volunteered so many different ways, and have enjoyed being a volunteer, I will have to find something specific and special to pay back what I have received. I hope that a unique opportunity presents itself, but I will also be on the lookout for a situation that can fulfill this need I have to give back.

Day 95 Medical Update

2006-11-29T13:38:00.000-08:00

It has been wonderful to be free of Drs appts for a few weeks. Today was my appointment with the ENT Dr that did the surgery back in August. He is the Dr that finally listened to me, and agreed that my hoarse voice was a problem, then it only took him a 30 second look to know that I needed surgery the next day. I really really like him. Anyway, he hasn't seen me since the beginning of Sept. , so when he walked in I was so excited to greet him in my loudest voice..."Hello Dr. G. don't I sound great?"
He started laughing and said "No, you sound awful.. you will definetly sound better than that soon"
YEA!! I am excited by his reaction, because although I do so better, and clearer everyday and mostly pain free, I have been worried since the beginning that my voice would never come back. Well, he did have to have a look - for those of you not understanding what this means, he puts scope up my nose and down my throat, it is disgusting and makes me cry and gag. While he is down there looking I have to make different noises, so that he can watch my vocal chords move. He looked, and I do still have a "paralysis of the left vocal chord", he thinks it is just a matter of time for the effects of the radiation to wear off, and then both vocal chords should be working correctly.
Well, it is a good thing that I really like Dr. G because I will see him every 6 weeks for a year - and get scoped - just to make sure I remain healthy. After a year I only have to go every three months.....for 5 years!

Day 94 Interacting with the Rest of the World

2006-11-28T03:50:00.000-08:00

At work, the sales admin, Holly, has taken over so many of my admin responsibilities, mostly because I haven't been able to talk on the phone. I get a message from someone, and research the question and then bring everything over to her and whisper the details. Then she calls them back and I stand there and listen and write down responses to questions that Holly can then rely back to the phone. It has worked out fine, but a little bit of a pain...
So, today I arrived at work with my phone voice back. Despite all the help that Holly has been, I have a list of things that I needed to do on the phone myself and couldn't. I reviewed the list and will do a few a day as my voice lasts.
I have just been whispering out in public and people just kind of nodded... today I ordered my coffee in a full scratchy voice and had a full conversation with the cashier... it felt great!

Day 93 Quit the Group

2006-11-27T03:42:00.000-08:00

I have been participating in an online support group every Monday for a few months - remember, I am the big red lips..
Anyway, I skipped last week and then I skipped today. I am not exactly sure why, except that mostly I don't feel sick anymore. I guess it feels a little bit like a fair weather friend. I got an email from the group leader asking me to either be in the group or give up my space so that someone on the waiting list can participate. So, I am giving my space to someone in need, as I was a few months ago. I did love the group and loved hearing from everyone all over the country with some extreme medical issues.
It feels good to know that I will be able to forget all of this soon. It also makes me so aware of how life changing cancer can be to most people.

Day 92 All My Friends

2006-11-26T03:35:00.000-08:00

I have so many different groups of friends, and all of them wonderful. Today we skipped church and somehow I had friends from all corners of my life calling in. I ended up on three different walks with three different collections of friends.
Some of the walks are kind of funny, because while my voice is stronger, it is still kind of strained and when I start walking, mostly disappears. So, a lot of the walk is in silence.
It is the kind of day that I will always rejoice to be alive and able to communicate, and know that I have so many people loving me.

Day 91 A Real Saturday

2006-11-25T03:29:00.000-08:00

Thanksgiving is so many people's favorite holiday. There is not a lot of stress ahead of time, not a lot shopping and running around. Clean your house, cook some traditional food, and enjoy your family - what is not to love about that? A day full of food and family,

So this weekend was really my first in so many that I woke up on Saturday feeling alive and ready for my normal routine. The last 7+ Saturdays have been days of lethargy and naps and feeling bad about my lack of interest in my family and my house and my kids...
not today, Chores again! Lee and I raked for 5+ hours and got those Christmas lights up.

Everyday my voice is stronger and clearer, and I keep surprising people when I can talk to them..

Day 90 The Statistics

2006-11-24T10:11:00.000-08:00

85% of those with Stage I laryngel cancer are virtually cured with no second cancer in the next 5 years
What about the other 15%? Of those who continue to drink and smoke, 38% will develop a second cancer.
90% of all recurrence happens in the first 2 years.

On the one hand these statistics are reassuring to me. I live a healthy lifestyle - exercise nearly every day, mostly eat my vegetables. So there is no reason for me to worry about a reccurence.
On the other hand, I have a fear that once your body has cancer you will always get it again.

I have become comforatble with the C word, a word that is so shameful to say out loud. I know a few people that like to whisper the C word.

Day 89 Giving Thanks

2006-11-23T10:36:00.000-08:00

Hard not to rely on cliches today,
yea, I know this is corney.. but thank you to my entire family and friends that have checked in with me and prayed for me and whispered on the phone to me. It is unbelievable how wonderful the support has been and how good it feels when someone calls to see if I am ok...

I do not have my voice at all today and spent the afternoon with family (thanks R&J) eating my favorite Indian food (thanks M) instead of turkey. I think that no one heard me all day, but my family was there trying to include me. Perhaps I should have brought my notepad and written my comments instead of trying to participate through whispers. It is incredibly frustrating!

I must confess that I rearranged the place cards on the table so that I wouldn't have to sit next to Jack.. with his hearing and my whispering, it would have been a tiring combination given the noise of cousins and dogs in the background.

Day 88 Surprise Yell!

2006-11-22T06:10:00.000-08:00

So, not much to report today except that I am continuing to really improve. My voice is loud and strong and I called a few friends on the phone and surprised them with my voice. It felt really so powerful to have a voice on the phone and not whisper.

This afternoon, while the kids were wrestling and fooling around on the couches, I stuck my head into the room and yelled at Teddy "Get off the couch".. it came out really loud.. much louder than I have been in months, He looked at me so shocked. It was amazing, and then we both just laughed and laughed.

Day 87 The Rest of My Life

2006-11-21T09:49:00.000-08:00

So, I am definitely out of the pain week and although my voice is still just a strained whisper, my throat feels pretty good. It looks like I will be cutting back to Advil only, a big step in my recovery and just in time for Thanksgiving vacation.
It is amazing how fast my "cancer life" is fading and just as quickly as I adapted to the zapper routine, I have put it behind me.
I have started planning a new exercise routine and have a goal of running two miles by 12/9 which is my next oncology appt. I feel like I have to prove to Dr. S. that I am a healthy person and didn't deserve to get this cancer.
Good nutrition, exercise and a life that is emotionally and spiritually fulfilled does not guarantee that illness will not be present. That is a paraphrase from the 7 steps to healing tapes that I have been listening to. I know that some people hold on to the theory that you can live your life as healthy as possible and still get cancer or still get hit by a bus, or the ones that say my grandmother smoked until she was 100 years old.
I think I will stick with the mainstream medical advice that says a healthy lifestyle will certainly give you the best chance at a healthier, longer life.
More years to our life and more life to our years.

Day 86 Kid Torture

2006-11-20T10:01:00.000-08:00

Generally the boys have been clueless about my cancer and really did not know about my daily trips to the zapper. Except today I had to talk to them about my recovery and then.. I had to torture them with flu shots....

and they were not too happy about it.

I did get my shot with them, and of course they made me go first. I explained that it was not a good time for me to get sick and that I was just starting to feel better and be able to talk and there was no way that I wanted to throw up with this sore throat. They said they understood.. but it took McDonalds Happy Meals to get them to agree to get a shot.
So, we have all suffered together.

Day 85 Ready to swim?

2006-11-19T09:41:00.000-08:00

So I took the kids to the Y today, something that I do a lot in the winter. There is free swim all afternoon, and mostly the boys like to jump off the diving board for about 2 hours and then we go into the gym and play with the basketballs for another hour.. it is an easy way to pass an afternoon.
So, in the past I have gone into the pool with them, and I will go over to the lap lanes and swim laps for 20 minutes. The swimming is something that I have really enjoyed in the last couple of years and have found it so calming and relaxing and exhausting. Well, I had tried on my suit at home before we left and spent all morning debating whether I would be able to swim. I was most nervous about the breathing and my throat and being cold... and really just if I was ready for all this. I decided that I was fooling myself into thinking I was ready... I am still addicted to the darn percocet... and yet I need to be back to myself.
So, I deliberately did not bring my swim suit, forcing myself to rest and take it easy for another week. Yet, sitting there in the bleachers watching the kids jump around in the pool, I was missing those laps...

Day 84 Glimmers of Me

2006-11-18T14:48:00.000-08:00

I am having some moments where I am forgetting the drama of the last 7 weeks and thinking like a normal person. My swallowing is easier, my throat is looser (if you can imagine what I am trying to put into words). I thought I might pull out my dayminder calendar, dust it off and start planning some things.
It seems that Lee and I have always had a vacation booked, something to look forward to. This year we have nothing. I think I was scared to book anything and then feel guilty if I couldn't do it. So we have started talking about ski weekends and a beach vacation and what to do next summer. Definitely I will be leaving my sick body behind me very soon.

Day 83 Wardrobe discussion

2006-11-17T05:05:00.000-08:00

So, generally I love to wear turtlenecks. I can wear a nice warm shirt underneath and pull the sleeves down to keep my hands warm. I have them in every color,

This year however, I am discovering that having to wear a turtleneck, and wear one every day is pathetic and discouraging...

So, I turn to scarves... which I am embracing as a new style that I have never been comfortable with before. Except they are itchy.

I had to poke the earring through the holes in my earlobes and practically had to re-pierce my ears. Because I haven't been able to wear earrings in the mask I haven't bothered putting them in at all, for seven weeks....

Day 82 And Still Worse Today

2006-11-16T09:25:00.000-08:00

I am a whiner..!! I woke up twice last night and popped a percocet in the dark.. I am so discouraged. I think because I have been able to handle the side effects so much better than expected, that I (wrongly) thought I would feel better faster...
My skin is done peeling and feels better, although it is very bright pink

Day 80 - 81 Not Getting Better

2006-11-15T09:24:00.000-08:00

and still feeling worse every day.

I am trying not to get discouraged, but with the zapping gone, I am ready to feel better.. and I feel worse. My throat is incredibly dry... so I have started some non-stop throat lozenges. By the end of the day I am feeling quite sick from the weird sweetness of the lozenges.
I am reduced to soup at room temperature.. but I know that any day I will wake up on the other side of this.

Day 79 Another Way My Life Has Changed

2006-11-13T07:21:00.000-08:00

No more drinking.. .just think of all the money I am going to save....Just to let anyone out there know that might not.. I used to drink a lot.. another biggie in my steps to healing - admitting you were an alcoholic. I don't want anyone to think that I do not take drinking problems seriously, because while I might joke about being an alcoholic, I don't think I ever had a drinking problem. In fact, drinking and I have never had any problems...
Interestingly, this has been a hard one for some of my friends to understand. They are thinking that I need to go out for a celebratory glass of wine... really what is wrong with just one glass of wine? Probably nothing, but you know, no one can understand why or how I got this cancer... what if it is the alcohol? There is a definite link between throat cancer and drinking. I am realizing that as important as alcohol was in my life, it really was not that important.

From a vodka tonic girl to a soda water and lime, this is a hard transition. Because I have been feeling bad, I haven't really had much of a drink craving at home. Because I haven't been really socializing it hasn't really sunk in yet. The hardest thing is understanding what I am going to drink.. nothing fun about plain water while sitting at the bar. I am going to have to find some signature virgin drink.

Day 78 Emotional Healing

2006-11-12T09:23:00.000-08:00

So, the radiation has stopped, but Dr. S has assured me that I will not start to improve for about a week or two. I am determined that the side effects will not interfer with my physical life. But, I need to figure out my mental state going forward.
In church I am still doing a lot of whispering - it is a great excuse not to have to sing...
When I am out in public, say at the store, I continue to do a lot of smiling.. when sales people ask how I am doing and if I need help.. I just smile and nod.
I still get a lot of laryngitist comments, and I just smile and nod. I am still a little worried that my voice won't come back, but I guess I will have to put that worry off. My voice can't really get worse at this point, since I can't make a noise above a whisper.
I am thinking about my long term future.. I don't really feel like a cancer survivor because this was such a small thing. The women in my on line support group have gone through so much and they have had and will continue life changing events due to their cancer. I am now able to imagine, even a little bit, the agony of extended chemo and radiation... just evil things to combat the cancer enemy.

Day 77 Take Time to Breath

2006-11-11T07:20:00.000-08:00

Lee is working all weekend, and so we don't have anything planned. The boys and I will stay as long as we can in our pj's.
I am doing my slow-motion Saturday morning puttering... this means do a few dishes, sit on the couch.. make a bed, sit on the couch... play a game with the kids - do this while sitting on the couch.
Mentally, I am jumping up and down and running three miles and lifting weights again.. my body is still so tired. I know that this will be a long week, as I am so anxious that the zappers are behind me and I need to wake up in my old body - oops, the old body had cancer. Ok, I need to wake up in the new old body.
I am looking over the stack of books and brochures that I have collected over the last 3 months. I think I want to throw them away, but I use the information like a safety net. Whenever I was feeling like I had no control over what I was going through, I could read a book on surviving, or a pamphlet on managing side effects. If I throw these away is that part of the healing process?

Steve and my mask

2006-11-10T16:04:00.000-08:00

Here is Steve and my mask..
just before he threw it in
the trash! good bye mask!

Certificate of Completion

2006-11-10T06:56:00.000-08:00

Day 76 Celebration and Yoga

2006-11-10T06:48:00.000-08:00

After my last zap I hung around the center and waited for the 5:30 healing yoga class. I was there a few minutes early and had a chance to chat to Judy the leader. She is warm and nuturing and a great cheer leader. When the class started she announced that I had just completed my treatments and the whole class congratulated me. It was incredibly corny, but felt great!
The yoga class was lovely and seemed a very fitting end to my last day here at the cancer center, esspecially after my stressful afternoon of getting over here.
I stretched and meditated and felt all the healing thoughts from the women around me. I am so ready to start feeling good about my body again.
Lee met me after for some chowder. We went to a noisy restaurant and he had to sit next to me in the booth because I can't talk above a whisper, it was cute and cozy..a very nice celebration together.
When I woke up this morning I was alone! Lee had left for work and me and the dog got to sleep in and be lazy. I woke up and did a little yoga tape and took the dog for a long walk.....

Day 75 Zap #33

2006-11-09T06:28:00.000-08:00

Of course the end had to have a little bit of drama to it.... the kids were going out to sleep overs today and tomorrow there is no school so I could sleep in and wake up in the house all alone (glorious!). So, Teddy was getting picked up to go to Cousin Jenny's for the night and I needed to get up to the library before they closed for the long weekend and because I was not used to driving to the center at 5, the traffic took me completly by surprise...
When I had left that morning, Amy had asked me to come in as close to 4:30 as possible, as they close at 5 and were waiting on me to leave for the holiday. So, I was running late before I even left home.. and freaking out completely... I practically threw Teddy in to Jenny's car and then rushed right back on to the highway ... by 4:45 I could see the center.. I just couldn't get through the gridlock of traffic lights.. I even had a panic moment where I thought I could park on the median strip and just walk to my appointment, it clearly would have been faster.
When I ran in to dressing room #3, all my wonderful nurses were there waiting for me.. they cheered as I arrived and I got my last zap!
Amy, Cassie and Steve then presented me with my completion certificate. It was so cute and they were all so nice to me. We hugged goodbye and I promised to come back and visit when I was able to talk so they could hear my voice.
Steve asked if I wanted to keep my mask, and I am a little grossed out by it, so I took a picture with my camera phone. Then gave permission for it to go to the trash.. good bye mask!

Day 75 Zap # 32

2006-11-09T06:23:00.000-08:00

I pretty much skipped in to my appointment this morning. I happily distributed the little gifts to everyone and they were all so nice and pleased. I got there a few minutes early so that I could hang out with my old men for a last time. I was singing, if only in my head, that this would be last day....
It was all so wonderful, but a little bit anti climatic. The routine was the same and I was still in and out in 5 minutes.. and the nurses all moved on to the next patient. They know that I will be back this this afternoon, so it was not yet the real good bye.
My neck has finished peeling, so it doesn't hurt quite as much any more but it is really bright pink.

Day 74 Gifts to my Nurses

2006-11-08T09:04:00.000-08:00

In order to celebrate the end of my 33 zaps, I will be giving Steve and Amy and Cassy the radiation nurses and Michelle the oncology nurse and Dr. S all thank you gifts. So, for those of you who know me well, will know that I like to give homemade Martha Stewart gifts.. but when it comes to the actual execution of home made things, I am not so good. I have great ideas and can figure out great creative solutions, but I am always one day late to actually pull it off.
So this time, I have been planning ahead and trying a few things out. I actually went to marthastewart.com and looked for easy ideas.
Lee even helped me with some of the shopping and the ideas. Thanks Lee, you know that I hate making decisions!
So, this afternoon I made some chocolate peppermint bark and packaged it up with some pretty bags and put it inside some nice holiday mugs. Then I spent some time drafting thank you notes to each of them. I feel like although I have seen them every day for 7 weeks, because I can't talk, I don't really know them very well. I am in the door in my johnny and on the table. My mouth is clamped so all I can do at that point is a thumbs up or thumbs down to any of their questions.. "Did you have a good weekend Carolyn?" thumbs up... "Did I get your hair in the clamp, Carolyn?" thumbs down.... "Carolyn, we are going to do an xray this morning, ok?" thumbs up...
Not exactly a two way relationship. I know that I am one of 100 patients a day and I will be out of the lives next week, but they are my only nurses, and I will always remember them.
Cassy- hoola girl on Halloween, beautiful smile, always positive
Steve - examines my sunburn everyday and recommends lotion, hides the new People magazine for me each week so that I can read it first, could be gay (?)
Amy - she's the boss, loves to talk about shoes. Went to Harvard square to the secret dansko shoe place. She adjusts the collameter on the machine every morning, I have no idea what that is.
So, thanks to my nurses, they were terrific!

Day 73 The kids...

2006-11-07T08:51:00.000-08:00

I have been fooling myself to think that the kids wouldn't notice anything or wouldn't be worried. A mother of a friend of Teddy's let me know that Teddy had been telling his friend Nathan he was worried about my voice. I have been casually explaining to the kids that I am taking medicine that is healing my throat, but it will take a long time and I won't be yelling at them until Christmas. Maybe I should have a few more serious talks with them. Teddy especially is a worrier and won't speak up if he is nervous about things. Josh, the opposite, likes to put the lotion on my neck and peel the sunburn.
I have been careful not to say the C word around them, and I don't think they have figured that part out. I guess someday I will have to tell them, but not any time soon.

I am feeling great today. I am sure that it is the psychological effect of only having 2 more days. I was so lethargic and wanting to exercise that I took the dog for a walk at 8:30 last night. In the dark, with a flashlight. I only made it to the top of the road before I was tired and my throat hurt, but it felt good to get off the couch.

Day 72 Treatment 29 done, 4 left

2006-11-06T08:39:00.000-08:00

So, my last Monday... Steve and Cassey and Amy were all there to greet me this morning. I am an easy patient and have learned the routine. We have a little routine of who is in the dressing room, who is up next, and who is on Regis and Kelly. The old guys and I have so little in common except that we all have 9 o'clock zap appointments, we watch Regis and Kelly together every morning. We compare our weight loss (and in my case weight gain, hahaha!) and we talk about different lotions for our sunburn. I am only talking in whispers and some of them can't seem to hear very well, so you can imagine how funny it is. It has become a nice little group, and while I can't say that I will miss this, I will certainly have some fond memories of those old men.
I have tried each day to count the 30 seconds that the actual machine is zapping me with the words "heal, heal, heal, heal.." I freak out every now and then when I feel like it has been longer than 30 seconds and someone has forgotten to turn the machine off. I am bolted to the table and can't see and can't talk, so I panic and try and imagine how would get out of the mask before the laser beam puts a hole thru my neck.
I have so many friends that are calling in to wish me luck on my last week, it feels good.

Day 71 Preparing for the end

2006-11-05T05:39:00.000-08:00

I am preparing for my last week and I just read the blog entry for the Sunday before I started... my how fast and slow this seven weeks has been!
7 weeks ago as I prepared to start the radiation, i went shopping and cleaned my house and "nested". Today, as I prepared for the last week, I took a nap and then I woke up and sat on the couch... what a difference in energy I have. I am starting to feel excited for the last week and anxious. I am esspecially anxious that my voice is not going to come back.. Once the radiation is over I will have about 2 weeks of feeling bad before the healing begins. Then I am hoping that my voice will really improve and I will start to wake up being able to talk.
I continue to let people help. Tonight Jack and Peggy are coming for dinner, and they are bringing everything (thanks!) I didn't even fight with Peggy over letting me do something. I was glad that my family was getting something to eat that I didn't have to think about.
Sadly, my friend Trish's father died yesterday. I spent the day worrying about what I could do for her. It is strange how doing something for others feels so good and accepting help makes you feel so helpless!

Day 70 More of the same

2006-11-04T05:36:00.000-08:00

Today is Saturday, in my old normal life this would be my day to accomplish a hundred different little things, spend all day with the family. Instead I am feeling like crawling into bed and not leaving for a month. I just cannot get the energy to move and I am feeling anomosity toward the laundry and the dishes....
Also, my neck is itchy.
Ok, enough complaining.. but it is getting hard to focus on anything other than cancer. I have slowly lost the other parts of my life, as I have let my schedule and meeting go, I have also left all the interesting things about me. I know longer have things to talk about, except my cancer. and I hate having to talk about it!
Everyone around me is gearing up for this week, to see it all end... we all hate talking about it.

Day 69 Tantrum

2006-11-03T08:24:00.000-08:00

So a little side story about how my day at the cancer center went today....As you might have expected I have been fixated on November 10 as my "end date" ever since September 26 - which was day 1. So in my calendar I numbered the days, skipping Columbus Day, all the way to day 33.. November 10. You should also realize that I am sooo tired of this routine. My body is exhausted and I am eager and anxious to be finished and move on. On Fridays I meet with the nurse and the Dr after my zap appointment, so today I was hanging out in the little waiting room (called dressing room 3) with my old men friends. Mr O'connor casually motioned to the notice on the wall and announced, "Friday they're closed, we get the day off".. I was stunned as the implications sank in... Friday is my last day... it can't be closed.. I need to end this... I cannot carry this over another weekend....
As soon as lovely nurse Michelle showed up I started to cry, quietly and embarrassed and it also hurt my throat because I was immediately congested... but I could not take this kind of emotional shock. I had expectations and I wasn't sure how to express the loss I was feeling at not being able to get zap #33 on Friday...
Well, as it turns out as soon as Michelle realized what I had gotten me so upset she assured me that I did have other options and Dr. S would take care of me... she is a fabulous nurse and very good at empathy, so I did feel better and embarrassed.
The good news is that Thursday will be my last zap... yippee, I will just have to go two times on Thursday, once in the morning and then once in the evening.. but I will be done! Relief!

Day 68 This has been a very long week

2006-11-02T18:23:00.000-08:00

The first few weeks of treatment went by very slowly and then the middle few weeks went by very quickly. These last few weeks are dragging out soo long... I can't seem to make it to the weekend. Part of the reason must be that I am not feeling great, but also it is because I have nothing to do. My old life was packed with schedules and meetings and appointments and now I have nothing. It is definitely a case of be careful what you wish for. When I was so busy I would wish for just one night off with nothing but the kids and Lee and nothing to do. I am so empty right now that the days are incredibly long....
Also, when you are completely scheduled I think you are able to get a tremendous amount of things accomplished. When you have a whole day ahead of you and only a few (boring) things to do, like laundry, I can't seem to even get that done...
I was awake in the middle of the night for the first time in a long time. Have I mentioned that I am taking Percocet and pm at night? It has really worked and I have always slept right through, with the vaporizer full blast next to the bed. Last night I woke up a few times because my neck is just completely on fire... the sunburn is starting to crack and it really hurts. Also, the little hairs on my neck are gone.

Day 67 Postaprayer.com

2006-11-01T07:39:00.000-08:00

There are so many resources on the internet and one that is intriguing to me is the idea of people all over the world praying for your health. I have friends and family praying for me and the prayer circle at church has been saying a special prayer each week. But really, can you ever have too much prayer and can you ever have the wrong kind of prayer? I don't really know the answer to that question. I also think that many of us do not know how we will react to our own mortality when faced with cancer, but I do not that there is a strange kind of peace that comes with placing your name on a prayer list.
Research suggests that prayer plays a vital role in healing. Although it does not always cure, it promises spiritual well being and reduces anxiety and depression. Really, what could feel better than knowing that 100 people are praying for you?

Another interesting web site is beliefnet.com. This also has universal prayer circles and it also has discussion boards. This is from this weeks "inspiration discussion board"

If you could have one superpower what would it be?

also,

"We would never learn to be brave and patient if there was only joy in the world"
Helen Keller

Day 66 Dropping Out

2006-10-31T08:14:00.000-08:00

Life is really slowing down for me. I have only been working a few hours a day and then I go home to the quiet. I am not sleepy, just really tired. Remember when you have gone on a long car trip and at the end of the day you are completely exhausted even though you haven't done anything? That is how I have been feeling. So, I come home from work, take off my turtleneck and sit on the couch... then I get mad at myself because I feel so lethargic and lazy. This is very frustrating.

I just hired the boy next door to take the boys trick or treating. Josh was all upset that I wasn't going until I explained to him that Patrick next door would take him out for twice as long and he would get twice as much candy than if he went with me. That was enough of an argument for Josh. Lee joined them for the begging and they had a great time. Halloween is not my favorite holiday and I'm glad that its over. I never did get to the decorations...

Friday is the fall festival at school, and I just emailed some of the boys' friends to see if they could go with them. I am just not able to handle the crowd and the school moms and all the small talk...

Day 65 The Final Countdown

2006-10-30T07:19:00.000-08:00

so... the end of the treatment days are in sight.... 10 left... 9 after today. There will be a few weeks "burn in" or lag time from when the treatments stop to when the radiation is no longer effecting my skin and throat and I will start to heal.
So far, I have certainly not experienced the worst. My side effects are mild compared to what I have read and what the nurses have told me to expect. I am getting by with advil, percocet and lidicaine. My skin is incredibly red and itchy - definitely the worst sun burn possible. I am ready for it to get worse, only because I am so anxious to begin healing.
I have been wearing turtlenecks and scarves to work every day, but that is really bothering my neck so as soon as I get home I put on a crew neck and slather my sun burn in aloe vera. The boys have definelty been looking at it and Josh helped put the lotion on last night. I told them it is just the medicine working and it will be better soon. I am still paranoid about saying the C word to them.

Day 64 How Can I Not be Changed by All This?

2006-10-29T10:11:00.000-08:00

I continue to look forward to and dream about when this is all over and I can go back to my life, and I imagine that it is my old life, the one I was living last year. Yet, I know that I am changed and that although this has been a quick chapter it has certainly been a huge event in my life. There are many cliches about living each day to the fullest, and make sure you tell your husband that you love him, every day...and those are all true and we should all remember those lessons.
I think I am changed in the way I look at other people and their potential vulnerability.
The friends and family that you hold the closest will not all be with you in 10 years, at the end of your life. So what are you getting from them and what are you giving away?

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face... you must do the things you think you cannot do.
Eleanor Roosevelt

Day 63 Yoga Class

2006-10-28T08:37:00.000-07:00

In my constant self help manner, I tried a yoga class at the cancer center this week. The acupuncture thing was good, maybe great, but scheduling was a lot of work and I couldn't seem to get the right time to go. Anyway, the yoga is a free, weekly class and since I haven't found any where else to try it, I thought this would be an easy way to walk in as a beginner.
My body is so tired and out of shape that I was really looking forward to a great work out - this class was not exactly a work out. I was the youngest one there and the only one that seemed to know how to exercise, but I quickly figured out that this class was not at all about the workout.
I was greeted by an earthy warm woman, with long white hair and flowy clothes.. her greeting was a big bear hug... and let me remind everyone that I am not a hugger. She folded me into the room and announced in a very serene manner to the other women that I was new and to welcome me. All the women said welcome and the room was so calm and warming. There were six of us, and they all knew eachother. I was the only one still in treatment and they wished me luck. The class was very slow and the music quiet. At the end of the class during the cool down, Judy even came over and covered me with a warm blanket so I could meditate in the moment. It really was terrific, but it was all about the supportive relationship of these women to eachother. I will try and go again, but I still need to try and find a way to get some exercise...

Day 62 Letting People In

2006-10-27T09:56:00.000-07:00

I originally titled this "Letting People Help", but I think this title is more correct for what I am feeling. I have been letting people in - allowing neighbors to give us meals and watch the kids. I would never have been able to do this without feeling an immediate sense of guilt. And I would spend the next few days stressing about what could I do back for the neighbor. Well, sometimes its your turn to just take and accept whatever help is there. I know that the neighbors are not expecting anything in return and I know that my time will come to help someone out.

In addition I am learning to let people help me. I was able to go the SPOHNC thing because I let someone take care of the kids (thanks Peggy). In my past life I would figure out how to juggle all of our schedules so that I wasn't needy. This might have resulted in my being in complete control, but it clearly was not the best thing for the kids.
It does feel good to have someone take care of you and not get hung up on returning the favor. Also, everyone feels good when they are able to help out.

Day 61 The Learning to Say No dilemma

2006-10-26T10:35:00.000-07:00

This week is turning out to be nice and quiet and low stress. I can only think that this entire ordeal has been made easier because I introduced a word into my vocabulary - "no". No, as in No, I cannot be the room parent volunteer this year, No - I cannot go on and organize every field trip, No - this is my last year running the soccer program, No - I am not going to that church meeting or book group ... and on and on...
So, although I have reflected extensively on the need for others in my life and remaining social so as to have support, I neglected and skipped any activity that would require me to be out after dinner or have to make phone calls - I am truly a liberated prisoner.
I know this to be true because in years past I have not been able to get through an hour without my daytime calendar and in the past I have had times where I have been triple booked for meetings on a single night... my daytimer is neglected and the pages are empty. I had no idea how much good this has been for my family.
My kids are having a great soccer season and doing better in school than ever. I am sure there are many reasons for this, but I also have to believe that my presence at home in the evenings (even if I am in my pj's before they are home from school) has to be giving them more confidence and less stress.

Day 60 Dysgeusia

2006-10-25T09:41:00.000-07:00

From Wikipedia, the free encyclopedia
Dysgeusia is the distortion or decrease of the sense of taste.

So this is one of the bad side effects that I am having. Although I have been able to eat and I am certainly not having a problem maintaining my weight, my favorite things to eat are not so good anymore.
First, coffee is not so good these days. I can remember fondly just a few months ago when I would have a few cups in the morning and then come home from work and reheat the cold stuff in the pot or pour it over ice and have an ice coffee. Today, I couldn't drink it after a few sips. I think that because I am also taking advil every 4 hours I must be keeping the caffeine headache away. I have been drinking tea quite a lot and I wonder if I will be able to get back to my lovely morning cup of Joe.
Second, almost as beloved, chocolate is tasting bad to me. It might be that the taste is too sweet and my tongue is feeling extra sensitive? I am not sure what the medical reason might be, but I do miss the craving and then the satisfaction when you eat chocolate.
I am keeping up the eating, but it is not as enjoyable as it used to be.

Day 59 SPOHNC

2006-10-24T07:55:00.000-07:00

Support for Persons with Oral, Head and Neck Cancer... who thinks of these names?

So as the queen of self help and support groups, they are trying to start a chapter of SPOHNC on the North Shore and had an organizational meeting ... I couldn't stay away!
I have a few topics to report on from this meeting,
First, some interesting (or not) facts that I learned from the presentation;
OHN Cancer is caused primarily by smoking and drinking, but also by the human papillomavirus. I think most of us have seen the commercial that talks about the link of HPV to cervical cancer. There is also a link to oral cancer. It appears that this is a nasty virus.. that is competely treatable, if you get tested.

More facts; OHN Cancer is also caused by betel quid chewing... google this if you want to know if you are at risk.
When you are under anesthia you have no gag reflex.
As soon as the laser beam is turned off, the radiation is out of your body.
Radiation destroys the dna in the cancer cells, so they can no longer reproduce.
Radiation was first used as a treatment for cancer in 1896.

Anyway, those are a few of the little factiods that I learned in the introduction. During the rest of the meeting I mostly looked around at the other people. I was the youngest "survivor" in the room by at least 10 years, and most of the others were men. I was also the only one with laryngeal cancer, everyone else had tongue, tonsil and salivary gland cancer. While I did not love the whole AA style support group - go around the room and say your name and your issue (I also was uncomfortable using my voice in front of everyone) it was nice to check it out and feel part of a survivor group.

Day 58 More Doctor Therapy

2006-10-23T12:25:00.000-07:00

That was such good therapy getting the Dr frustration written down, that I will just continue the story with a little more reflection on the Drs in my life.
After all that drama I was concerned about going back to the same Dr, but it is also hard to move to a new Dr and even find a Dr. Anyway, the nurse at the cancer center suggested that I should get a flu shot this year and said I should call my primary care and get this scheduled. So, I decided that was easy enough and really my old Dr can't mess that up, right? I called that lovely (insert bad word here) receptionist and asked for an appt for a flu shot.. in her nicest (not very nice at all) tone she informed me that they had not yet even received their supply (although later I realized that cvs was doing them for free that week) and she could not help me. I replied in my very best tone of voice, determined to make this interaction a success, "When would be a good time to call back and schedule an appt?" She was hanging the phone up on me when she said... sometime next month.... whatever that means - does that mean in 30 days or does it mean the first of the next month?
I decided that it really is unacceptable to me, and I can take a lot of abuse, so I have started the search for a new Dr. and I will find one that can give me a flu shot before Christmas!

Day 57 Doctor Drama

2006-10-22T15:18:00.000-07:00

Some of you may know the details of my Dr. drama, I will provide a quick summary.

Just after July fourth, when my cold would not go away and I was really feeling bad (and I thought it was just that Susie was leaving me!) I made an appt. to see my primary care Dr. I had not been to the Dr. in almost 3 years, and I had not actually seen my Dr. in over 5 years, because I preferred seeing the nurse practitioner. So, I again agreed to see a nurse, and was scheduled for an appt. a few days later. Melanie the nurse was very nice, and although I repeated that I had never had any allergies, she insisted that allergies can appear at any time in your life and that I must be having allergies with post nasal drip that was irritating my throat. So, I paid my $25 co-pay and went to the pharmacy and stocked up Claritin, which I took every day for a week. However, I was still feeling bad and my throat didn't seem to be getting any better. So, I made another appt. and agreed to see a different nurse and a few days later I went back in. This nurse was Ann, and she was very nice and gave me a throat culture - which tells you in about 3 minutes that you don't have strep throat - and then said maybe you have a little infection, here is some amoxicilion. So, I paid my $25 co-pay and I went to cvs and paid $10 for my antibiotics, which I dutifully took for 10 days, and then I still wasn't feeling better. So, I made another appt. and this time I got to see a Dr., although it still wasn't my Dr. So, the Dr. (unknown name) agreed that it was a long time for a virus and that the antibiotic should have worked, but sometimes amoxicilian doesn't work for everyone, so here is 10 days of zithramax. So, I paid my $25 co-pay and I went to cvs and paid $10 for my new antibiotics, which I dutifully took for 10 days. And I was still feeling lousy....The Dr. agreed that I should see an ENT (ear nose throat specialist) however, the next appt for a new patient was at the end of October.

At this point my friends were getting a little tired of me being tired and not wanting to gab on the phone as I usually would. I was occasionally crying to one of them that I was just going to go the emergency room so that someone would help me....So, a certain friend of mine (thank you Ann) insisted that I get some real attention and stand up for myself and get someone to really diagnose me. She took my kids, and while being coached on the phone by her, I went to the Drs office and cried in the waiting room - omg - did they treat me badly - like a total drama queen. Anyway, there were a few more dramatic moments in the story, but the end of it is , that you need to cry to the receptionist to get what you want, and really don't worry about who is in the waiting room listening to you be hysterical.
I waited a few more days and then was able to get an appt with a wonderful ENT Dr. who looked down my throat using the disgusting endoscope (ouch and gross) and immediatly scheduled the surgery..

the moral of this not so short story is to trust your instincts and do not trust the Dr...if what the Dr (or nurse) tells you does not feel right then keep asking questions... and keep your checkbook out for the co-pay!

Day 56 Gaining weight

2006-10-21T07:18:00.000-07:00

So.. I will try not to dwell on my diet issues and exercise obsession... but, on Fridays I see the nutritionist to make sure that the pain medicine is working and allowing me to be able to eat. Apparently this is the week that patients weight becomes a problem and the nutritionist needs to discuss feeding tubs and Ensure... well, just to reassure all my readers I am not going to need a feeding tube.. in fact..... I have gained two pounds...
I know that this is good and my body needs all the strength I can give it right now, and I feel like the weight (only two pounds - get over it and get a life) is only because I am not exercising right now. Which actually makes me a little sadder than gaining weight because I was feeling so good and strong a year ago, well I will get there again.

Day 55 Close Talker

2006-10-20T09:34:00.000-07:00

So in my past life I had been accused of being a soft talker.. this was mostly when I was on the phone with someone and I would make quiet remarks or wouldn't speak up. Perhaps it is because at times I have been very aware of my hoarse voice and feeling like I have always been the loudest one in the room.
Recently though I have become a close talker, and this is more because I am whispering so much. I feel like everyone can hear me when I whisper and it is funny that sometimes people have been responding, "yes" "ok" "call me".. when they have no idea what I have said. Perhaps it is like being on the airplane with Michelle and my friends are tired of having to ask me to repeat - thus I turn to close talking.
I am definitely doing this with the kids. At Josh's soccer practice on Wednesday when I was letting him know that I was leaving to pick up Teddy, I had to walk through the practice and whisper in his ear because my voice was so tired. Funny, that the kids don't think that it is weird anymore.
Another funny thing is how many people whisper back to me. I can have entire whispered conversation with someone, with them whispering right along with me and then at the end they wonder.."why am I whispering".
I also wonder about my froggy voice. It seems that I have had a hoarse and froggy voice my entire life. So, does this have anything to do with getting cancer? The Dr.s still can't seem to figure out why I have it. So, was my froggy voice the cancer cells effecting my vocal chords? Will I have a froggy voice when I am cured?

Day 54 More behind me than ahead of me

2006-10-19T09:34:00.000-07:00

Yippee.. I am making progress. 17 zaps behind me and 16 zaps to go......despite the warnings from the nutritionist that I would lose weight.. I have gained a few pounds and my diet has certainly changed in interesting ways. After years of weight watchers rules, I am now eating almonds every day (good protein) and adding protein powder to my smoothies. I haven't been able to drink coffee, it is starting to feel bad on my throat, so after a 1/2 cup in the morning I have been switching to really sweet tea - made with lots of honey.
It feels good to take a break from my constant calorie counting and crazy exercise schedule, except that I am wishing to get my old me back and my old life back. I am so tired in the afternoon, but not tired for sleep, just wanting to sit on the couch and not move.
While my voice had been getting stronger each day, today it is completely gone and I can't seem to make any noise at all. I will give it today to rest and tomorrow I see the Dr so I'm sure he can tell me what is going on.

Day 53 Healing Circle

2006-10-18T11:28:00.000-07:00

There have been lots of studies on the importance of support groups and outside assistance when recovering from illness. The data is astounding, how a person with strong ties to the community and strong friendships have a huge advantage as compared to those who do not have or do not seek outside support.
Our connection with others lies at the heart of our healing
no surprise that those with the support group, the prayer circle, the people checking in, have the best recovery and the longest survival rates. Is this because of their attitude originally, that those with the support group have the personality to survive? Or, does it happen after you get sick that your support group keeps you strong through your illness. I am sure that it is both, the more introverted you are the less likely you are to seek additional help that might get you through an illness.
I sent an email around to my friends on Sunday, who ever can make it to Starbucks, Wednesday at 930... it is amazing the friends that I have (I know that I have repeated this thought quite a few times, so you can see how important it is to me). Some friends had to leave early and some arrived late, and some for only a few minutes.. but for over an hour we were together as my support group, and we didn't even talk about me! It didn't matter, they were all they showing their support just by responding to my request for a coffee together.

Day 52 East and West

2006-10-17T11:29:00.000-07:00

I have been listening to a book on tape called "The 7 levels of healing". It was written and narrated by a Dr. Onconlogist and goes through the process that many people go through when faced with serious illness. I have been listening in the car, generally so that I will stop talking on the cell phone while I am driving. So, because I only listen for 10 or 15 minutes at a time, I have not really been paying too close attention. But, sometimes a topic or a few sentences will make a lot of sense.
So this morning he began the topic of alternative or complimentary medicine. He used an analogy that I found very interesting; in western medicine Dr.s are trained to view the body as a machine and that they are the mechanics. Bring the car in every year and get a tune up and if something doesn't work, we'll replace it. In eastern medicine, the body is considered a garden and the Dr.s are the gardners. They are on hand to continually tend it and nurture. This sounds so much healthier. I love the picture of "tending the body", giving it sunlight and water and nutrition. This so much more comforting when thinking of the importance that the Dr.s have in my life right now.

Day 51 Feeling Good

2006-10-16T08:47:00.000-07:00

I am feeling so good today, after a very quiet and peaceful weekend. I had nothing to do all weekend and was able to putter around the house and even did a little bit of cleaning. I watched some movies and took 2 naps on Saturday.. wow, that hasn't happened ever.
I even had a few thoughts like maybe something was wrong with the laser beam last week because my throat is feeling so much better than it did a week ago. Of course, I can't tell Jim or Amy - they might turn up the heat on the bug zapper.
As my voice has gotten stronger I have been able to have a few more conversations with them, even recommended a good shoe store to buy those all day clogs that I love so much.
It felt good to go to work this morning and feel more confident in my voice, even though I wore a scarf around my neck. I am not sure that my voice quality has improved much, I certainly still have that "tonal" sound - I think that the Dr. Said that this was still healing from the surgery.. Except that it has been 7 weeks, shouldn't it be healed by now?
I am still being quiet when I don't feel like getting involved with the boys fighting,

Day 50 Halfway Mark

2006-10-15T08:46:00.000-07:00

So when I started blogging way back in August... summer was a long time ago, I thought that 100 days was too long and I would never come close to blogging for 100 days. But here it is, Day 50. I am not quite through the half way mark for the treatments and the trauma lasts a few weeks after the treatment, so today feels good that I am half way through this "chapter".
Life has some good chapters and bad chapters but I am really not going to say that this was a bad chapter (knock on wood 50 days to go). So far I am getting by just fine and every thing is staying together and even some good friendships have gotten stronger and I have learned to appreciate my family and not yell at my kids - haha.

Day 49 Self Help Queen

2006-10-14T08:45:00.000-07:00

Seven Steps to Healing , Yoga , Accupuntcure , Mediation , Visualization , Prayer

All my recent life I have been a serious self help queen, if you need a book about relationships. weight loss, raising kids, going to Disney, hiking in NH, biking in Boston, learn to pray, learn to meditate, every exercise video ever... well I have it, and generally I have read them all and even use some of what I read in my real life.
Any time I have ever had a problem or one the kids says something, or any kind of behavior I have to rush to the library or the bookstore and get every book on the topic and then put post it notes in and fold corners down for L to read and then generally I will "discuss" what I have found out. Discuss usually means me talking about all the different methods and L agreeing or not by nodding his head and says things like "interesting"...
I have realized over the many years of marriage that it is how I work through an issue, and it is not the way that L does, so I continue to talk it through with him and I don't get disappointed when he doesn't ask to borrow a book...
So, of course, when all this started L and I took a few trips to the book stores and the library, but I really didn't find the right kind of book. And it might be because I was really not sure what was going on, or maybe because it was about me and not one of the kids. Or maybe it is that it was me that would have to adapt to a new normal and a new behavior and all the books that I looked at were really scary and harsh. I think that I am just not ready for a macrobiotic diet..

Day 48 Feeling Like a Complainer

2006-10-13T08:44:00.000-07:00

While this blog was originally meant to keep my family and friends up to date with me, mostly because I can't talk on the phone and don't want to be a group emailer, it has certainly helped me in many ways.
I find that sometimes in the waiting room or while I am in the bug zapper, I can relax and think of different topics to write about, or different ideas I have to search on the web that I can then write about. I was concerned that I would start this and be really into it for a few days and then not be able to get back to it. I was worried that it would turn into a stress, but actually completing a thought each day to share has really brought a lot of gratification. I actually like to look at my own blog! I hope that is not to vain, but it is certainly a sense of accomplishment.
However, in reviewing the last few weeks, I see that while I have wanted to keep people posted on "my cure" I do not want this to turn into personal therapy or a complaint box. I will try and keep this positive and without to much "all about me"... even though it is in fact, all about me.
Mostly, I am scared about what will happen in the next month and the anticipation of pain, and the fact that I cannot stop the process now that it has started. I must complete 33 zaps...I will be half way there in one more week....

Day 47 October Sunburn

2006-10-12T09:08:00.000-07:00

Radiation - What the heck is it?
When I googled radiation, the first several pages of web sites were all about the evils of radiation exposure and nuclear bombs. There are a significant number of web sites devoted to how awful radiation has been to lots of different countries and to so many people, how it has instantly and dramatically changed a place and the inhabitants.
It took me a few minutes to get down to the sites that talk about the "healthy radiation" - hmmm not really possible. Did you know that a person can only go through radiation treatment once? So, if I get cancer again, in 10 years somewhere else in my body, I can't get radiation again. Also, the 33 treatments must be some magic number of how many zaps a person can get that clears the cancer cells and just before the risk of cancer from radiation gets so high that you should have just lived with your original cancer to begin with. The cancer that you get from radiation treatments is much worse than most of the cancer that it is treating.
There is a rectangle appearing on my neck, its still faint except when I get out of the shower. Amy, the radiation therapist has assured me that it will get much worse... I have been using aloe vera gel and some natural organic oily moisturizer that S. got me. So far my skin hasn't bothered me any more that feeling like it is very hot. If that is the surface of my skin, I wonder what the inside of my throat is looking like?

Day 46 Good Karma Beads

2006-10-11T08:43:00.000-07:00

So we did a lot of shopping in Boulder, in and out of all the boutique stores. It is nice to be able to wander around the shops that are not chain stores and when you are not in a big suburban mall... Oh yeah, the view of the mountains makes it especially great.
M. gave me a really nice gift of Karma beads, that I have been wearing and receiving a lot of comments on. I have been thinking about the symbol of inner strength that they represent, and trying to keep myself positive as I go to the treatments each day.

GOOD KARMA BEADS - GOOD HEALTH - INNER STRENGTH
Wear these beads always and you can have good health, be calm and tranquil, filled with peace and joy, free of stress and addiction, to experience soothing restful sleep, be open to new possibilities and new passions, enhance your creative abilities and always discover the strength and beauty that lies within.

Day 45 Malox Cocktail

2006-10-10T08:29:00.000-07:00

Wow, when they told me my throat would hurt on day 10 -12, they were so right! I definitely got back from Colorado just in time. Over the weekend I could feel my food going down, almost like a snake swallowing a huge rat - ick! I had gotten the prescription for the Malox before I left, but it comes in a quart size jug - not kidding - that there was no way that I would have brought it on the plane. Besides, I was fighting the side effects for as long as possible.
On Tuesday when I went in for my appt. my favorite nurse stopped by to ask how the pain killer was working and I explained to her that I was afraid to try and did not want to give in just yet. She was looking at me like I was pathetic and encouraged me to start using it, at least so that I would be used to eating that way, for when it really starting to hurt.
So, I gave in... and now I use a baby syringe to squirt the Malox-Lidicain to the back of my throat, which completely numbs everything, but enabled me to eat a more normal dinner. I still have these funny instances where I just instinctively reach for a cracker or carrot and then remember that I can't eat that! I am going to try and stock up on the soup, and have a few varieties ready at all times.

Day 41-42-43-44

2006-10-07T15:14:00.000-07:00

Grouping the days like this is a little bit like cheating, but I really don't want my commitment to this blog to turn into something stressfull. So because I was on vacation, I will just group the weekend days together.
What a wonderful, positive time in colorado! I spent the three days with Susie and Michelle and both of them are such great travelers and have such positive smiley personalities that I was carried through the weekend feeling great.
The plane ride was a little hard because M and I were both excited just to be there, and M kept having to "huh?" me, because my strained voice couldn't seem to carry over the plane noise. The good news is, that didn't seem to slow us down at all. We were both so glad to be traveling together and visiting Susie and breathing the rocky mountain air. It was a refreshing and relaxing, and I could forgot the anxiety I have of the next 30 days.
Thank you S and M (haha!) for the energy!

Day 40 Side Effects

2006-10-05T11:25:00.000-07:00

So I think that I am starting to feel the side effects of the radiation. I have a sore throat, although I am hopeful that it is only because we were sleeping with the window open. I am still so afraid of pain that I am determined to put off the side effects for as many days as possible.
My favorite foods like cereal, pretzels and pizza are starting to hurt going down, it almost feels like I am trying to swallow a big glob of peanut butter. I will have to start being creative with my meals, like pizza in a blender...? I just have to remember that it is only for a short time.
I went to the fair yesterday and bought some local honey - supposed to help the immunity and then I went to Target and stocked up on throat lozenges and advil.

One funny side effect that no one told me about is that I would have the mesh marks on my forehead and chin from the mask. I actually didn't really notice it, except that the admin. at work had been looking at me funny all week and finally she asked if I was wearing a hat to bed, hahaha, I kinda' didn't answer her, but I guess I will have to think of something.

I thought that my voice was sounding great this morning and even asked a friend at work, "don't I sound good?".... he really hesitated and said I sound better.. but not too good...

Day 39 On Giving and Getting Advice

2006-10-04T07:58:00.000-07:00

Advice is such a funny thing. Certainly everyone loves to be able to give advice, it makes you feel like you are being a good friend. Giving advice makes you feel smart, like you have something important and interesting to say. Also, giving advice gives you a chance to talk about yourself, which everyone likes to do.
Getting advice is so incredibly hard. You want to hear suggestions and cures and remedies, but there is a tremendous pressure to respond so gratefully. Sometimes the advice is just not going to work or be at all useful - the nutritionist telling me to eat more red meat - its just not going to happen.
When you are getting advice, you really want to listen and generally my friends have been really helpful and kind, (thank you Christa for throat coat tea and honey!). There is a huge stress that comes when you receive a lot of advice.
I have been feeling like I need to take everybody's advice, except that it can all be so different. For example, should I sleep more and keep my body calm and well rested? Or should I make sure and take that walk and try to get to the gym a few times a week, like my body had been used to? The advice that I should listen to my body is also hard to take, I want to be back at the gym and I loved my cardio classes, but there is so much stress right now on my time and trying to keep everything scheduled...
I certainly have a feeling that I am not doing enough when I am unable to take everyones advice. I still feel bad about all the milk and dairy that I eat, when the accupuncture lady told me that dairy feeds cancer cells! Where did she find that piece of information???

Day 38 Remember what you have

2006-10-03T05:25:00.000-07:00

not what you don't have
This phrase is usually used to remind oneself to be thankful for friends and family and good health and world peace...
However, in the cancer center it is your place in the sickness hierarchy. Breast Cancer is clearly in first place, and has the most "empowering" women's poster, a lot of publicity around the fundraising charity walks and has lots of support groups. Colon cancer has a few posters and a support group. Lung cancer is clearly the bottom, I don't think people with lung cancer get together for therapy.
The old men in the waiting room like to make bathroom jokes and whether they can hold their bladder for the few minutes that they are in the laser beam. I think they assume that I have breast cancer, and I let them believe that. I don't do much talking to them, I just let them make jokes and wish me luck and comment on the tanning bed.

When I talk to people and they hear my hoarse voice, I tell them that I have allergies, and then I have a little daydream that I tell them the truth. You can tell people anything and they will believe you, I could tell people that I have brain cancer. Except, then I go back to "remember what you have, and not what you don't have". I guess this works for me because I do not have something as awful as brain cancer.

Day 37 No longer silent

2006-10-02T17:30:00.000-07:00

So I found my voice, and it came out loud and strong... sadly right at my kids. I am so happy that I was able to yell, but then so sad that I used my voice to yell at my kids! I have been taking lots of Clariton for the last week, so finally my cold is clearing up and I am now one month from surgery and just like the Dr. said my voice came back. It didn't sound that clear all day, but definetly I was more myself. Which is so nice, since I have been so terrified of being silent for the rest of my life.

Day 36 More on Surfing

2006-10-01T12:04:00.000-07:00

Part of my surfing led me to an online community that is quite active in providing support to cancer patients. I signed up and had to submit a "proof of diagnosis" from my Dr., no doubt to make sure I wasn't a wacko faking my illness. So I joined this online group that meets once a week for 2 hours, online. I signed on 2 minutes late, so I wouldn't look to eager being early to the "meeting". As the newbie, a lot of the discussion was the others checking in on eachother and updating eacthother on how the week went. There was also sort of a go around the circle and update everyone on the progression of your illness and your treatment. A few of the members were recovering from quite significant cancer illnesses and some were, like me, generally healthy and just starting a diagnosis or a treatment. It was most interesting by how much advice everyone had to give me and the diversity of each persons advice.
Everyone also has a symbol next to their name. So the first thing that the group wanted me to do was scroll through the set up and choose a "symbol" that expressed my personality, so they might get to see more of what kind of a person I am. Well, the symbols were all horrible! I did not want to be a smily face or a yellow duck... I tried to get out of it and jumped back in to the conversation without a symbol.. and I was sent back out of the chat room, until I could choose. I hate being put on the spot like that. So, I chose some big red juicy lips. I am not sure what that says about my personality or what the other members thought of them. No one mentioned my symbol after that, maybe I should have chosen the yellow duck.....

Day 35 Quack Watch

2006-09-30T11:24:00.000-07:00

The internet has been so awesome for information for me. Whenever I learn anything new or anecdotal from someone, I jot it down and as soon as I get home I start surfing. I also take notes at all my Drs appointments and from the all articles that I read in the waiting room. So at home I am constantly surfing and googling (is that a real word?).
It is amazing how many "experts" are out there. A really odd web site is called Quack Watch and it warns cancer patients away from trendy alternative methods. I can't tell if this web site supports accupuncture at all, or if it is ok as a complement to traditional treatment. Also, it doesn't seem to have any actual information of its own. The entire web site is devoted to how wrong everyone else method of treatment is, but its hard tell what treatment method they would support.
Another odd thing about internet surfing is that some of the web pages that you can stumble across may not have been updated for years, but you can't always tell. A few have discussion boards and the last posting may have been a decade ago.
There is certainly an addiction to suring and a frustration that can occur when you surf around although you are sure that there are pages devoted to your topic, you keep finding the wrong thing, or a store you are looking for is located in Ireland, or the recipe you want you can find only in Russian.

Day 34 Paper or Plastic?

2006-09-29T05:26:00.000-07:00

It is amazing all the different ways you need your voice and all the times that it is impossible not to talk. I can't think of a time that I have ever met anyone that cannot talk and how these people function, alone, doing daily things. I have found myself so frustrated by the funniest things. For example, I don't really sing to the radio, however, I sing a little. There are few songs on the radio where it is impossible not to sing a few words or the chorus. I have lately even tried to sing these few words, and I can't, so listening the radio in the car has become so odd.
Another example is at the grocery store. My grocery store employs some special needs people as the baggers and most of them I know. I can't seem to speak loudly enough when I am asked if I want paper or plastic, so the last time I went to the store, I had to reach over and grab the plastic bags and start throwing the gorceries in, just because I couldn't answer the baggers questions.
Also, on Sunday mornings, the dog and I walk this country walk near church and on nice days there are alot of other dog walkers. They all say good morning and nice weather and whatever, and I feel so weird because I just smile and nod my head and keep moving, but I do not reply back.

Day 33 Had a Visitor

2006-09-28T05:25:00.000-07:00

So, I let Lee into my little world at the cancer center today. It felt good to have him along with me, but also I was feeling a little territorial about my space there. The usual old men were not there, just the quiet guy that is a little scary and always seems to be in a lot of pain. Lee got to go into the radiation room with me, and he met Jim and Kathy and Amy, the boss. They actually showed him all the stuff and how the laser gets set up and he might have even pushed the button... I don't even know where the button is.
Because my eyes are shut and I can't talk, I can't see what's going on and I can't ask any questions. As the other days have been, I was in and out in a total of 15 minutes. My voice is clearer in the morning now, maybe because my cold is going away, but still tired at the end of the day. I was completely exhausted at the end of the day, but I am not sure how to tell if that is the usual end of the week, Thursday night exhaustion, or if I am feeling some radiation side effects. I know that I am pretty good at ignoring how I feel and getting through the day and I know that will be a bonus for the next month.

Day 32 Like a Big Bug Zapper

2006-09-27T12:01:00.000-07:00

It is amazing how quickly you can create a new normal in your life. My new normal involves lots of vegetable, steamed on the stove (no more microwave broccolli!) and leaving my house promptly at 8:40.
I have been trying to do some heathly visualization, but today all I could come up with was the "Big Bug Zapper". The machine makes a big buzzing sound and I am thinking of the big bad cells in my throat getting zapped, like a bunch of swarming mosqitoes.
I am starting to tired of not being able to talk and always being in a strained whisper tone of voice. I know that I will get worse voice quality before it gets better, and I get a little nervous that my voice is not going to come back at all. I did read a pretty good article about voice therapy and improving the strengh of your vocal chords. Friday I will see the Dr. and the nutrishionist, so I will make sure to ask them.

Day 31 Treatment Day 1

2006-09-26T09:12:00.000-07:00

eek, it is still all so surreal. I feel like I am in a lifetime movie, although clearly there is not very much other drama in my life (thank you God!). So, here is a description of what happens. First, I get to park in the patient spaces. Second, I get to use the patient bathroom. Third, I get to put on the disgusting patient johnny wear. (Why do they call these johnnies?) The good news is that I get to keep my pants and importantly my socks on. The other people waiting in the special radiation waiting room are all old men, in full johnny wear, no pants.. I am assuming they are the prostate crowd. They all love me already, called me sunshine this morning, said I was positively glowing when I came out, and wished me a lovely day until we meet again tomorrow. it was very cute...
anyway, so I change, and sit with my special id card ready to go. I only had to wait about 2 minutes and then Steve, the same tech as yesterday greeted me. He and Cassy are working my time slot, and they are both very nice. It was easy getting onto the table and into the mask, but it is really scary and I definitely had to talk my way through some panic moments. Just imagine that you head is confined and squished into this mesh mask, which forces your eyes closed and your mouth clenched. So, you can't see and you can't talk. Then the mask is bolted down to the table so you are completely immobile. Yesterday, during the practice, I had to be on the table for quite a while, I think about 10 minutes while they confirmed with the Dr. that every thing was lined up properly. Today was much quicker, I think less than 6 minutes.. it still seemed like a very long time. I kept imagining that I was being left alone and I couldn't move or get up. I think that tomorrow I will ask Jim if he could talk to me a little more, just so I know that I am not alone. I can hear the machine when the actual radiation is going, and I know that they said that I wouldn't feel anything, except I think I did feel something. My neck is tingling and warm.. oh yea, I am completely psychsematic - however you spell that. It is just my weird brain imagining the laser beams penetrating my throat and setting fire to all those bad cells.
I was at work by 9:20.. Quite amazing.

Day 30 Preparation

2006-09-24T22:25:00.000-07:00

ok, so I am preparing for the big start day tomorrow, once I start I can't stop and I can only take Saturday and Sunday off. So, 5 days a week for 7 weeks, puts my end date at November 10th... I will count down to then.
So, to prepare, other than the big retail therapy trip to the mall, I have down 7 loads of laundry, changed all the beds, washed all the sheets and towels and started to pull out the winter clothes. I am looking forward to putting on some cozy sweaters and turtlenecks.
I cleaned the house and sorted my desk.. and then I moped around. The waiting is the hardest part, at least today it is. On the other hand, I wish that I could just put this off forever, I am so afraid of it hurting!

Day 29 Retail Therapy

2006-09-24T13:25:00.000-07:00

Retail therapy is definitely the new buzz word amongst us suburban moms meaning go the mall without your kids and walk around looking at shoes and get a coffee at starbucks and drink the entire cup. For me it does not even have to involve purchasing anything.
So I went to an early acupuncture appt, which makes me feel rested and energized at the same time, it also puts me in a quiet contemplative state. Then I browsed Barnes and Nobles for 2 hours... that is so great... my idea of heaven. I went up and down the aisle and randomly browsed through books. I spent a long time reading cookbooks, funny I don't cook, but I love cookbooks. I got a coffee and easdropped on a women interviewing a young girl for a nanny job. The mom was doing all the talking , loudly , so I wonder how she will know anything about the nanny if she doesn't let her speak. I am so silent these days that I sometimes feel invisible.
Then I went to the mall and bought some new lingerie, always makes me feel better. and then I went jean shopping and didn't care that I tried on about a thousand pair and none of them fit. I was just enjoying my time, and knowing that in a few weeks I will not have the energy or the inclination to deal with the mall on a rainy Saturday. So, I ended my therapy with a beautiful cashmere sweater that I can't wait to wear...

Day 28 Learning to Listen

2006-09-24T13:24:00.000-07:00

Dare anyone to go an entire day without talkng... not a sound. It really is impossible. I went for a walk today, thinking it was a great way to rest my voice and even the occasional people walking past required a response. I few times I was able to nod politley, but sometimes I found myself saying "good morning". It is an impulse that I seem unable to resist.
We went to a big neighborhood party tonight and I tried to just be silent and nod, really difficult. Except that when I did try and participate in the conversation, I found that no one could really hear me or they pretended to know what I was saying. In one of the brochures that I was reading, there was an article about voice therapy following radiation. Apparently I am in for times of isolation and anti social behavior due to my lost voice. The article urges voice therapy to strenghten my throat and learn how to project better. Funny, I have been such a lound mouth all my life... I never thought I would have a problem with not being heard.

Day 27 What to tell the kids?

2006-09-20T05:25:00.000-07:00

So, the kids have started to complain about my whispering and when am I going to be able to start talking again.. maybe they are tired of having to answer the phone. Or is it possible that they actually miss my yelling voice.?
So I have started to tell them that I am going to have to take some more medicine for a few months, and that I won't be able to talk at all for a while. I am trying to keep my panicking conversations with Lee out of their range, but I am sure that they must pick up on the vibe. Also, the fact that there has been random babysitters after school and that I left them for 2 1/2 hours at piano so I could go to the Dr..
They must know that something is up, but they are like the rest of us to the extreme, sometimes what is right in front of your face is the easiest to avoid.
I think one of the major reasons that I do not want anyone at school to know is that I really do not want the boys to know and get freaked out and scared.
We went to the Rolling Stones concert last night, and it was pretty fun and funny that I was lip syncing all the songs because I can't sing (I couldn't sing before either). So this morning Teddy asked if we drank beer and I explained to him that because my throat is sick that I don't drink beer anymore. Also, I told him that because Lee is getting his body ready for the marathon, that he doesn't drink beer anymore.. Teddy seemed so happy and relieved Those teenage warning commercials are definitely getting to him.

Day 27 Feeling Bad

2006-09-18T20:03:00.000-07:00

I have been trying to live the last few weeks in a relatively normal routine. Trying to exercise again and really eat well. I got such a lousy cold on Sunday and I am feeling so much worse today. I know that it is just a regular cold, but I was so committed to my body feeling strong for next week that this is really making me feel bad. My body is tired and aching and I have this big Drs appointment today... I think they have to look up my nose and down my throat, how do they do that when I am so congested?

Day 26 Kid Whisperer

2006-09-17T05:24:00.000-07:00

So, I have determined that a truly positive thing that has come out of all of this, is my inability to yell at my kids. My kids, being no different than any other kids do still requiring some yelling, so again, Lee has really stepped in and helped out there.
I am now whispering at my kids, and they have to stop yelling, crying, screaming.. whatever if they want to hear me.
For example, Josh yelling from the kitchen with the refrigerator door open, "Mom, Can I eat the last chocolate yogurt?"
"Mom, Can I eat the last chocolate yogurt!"
"MOM, CAN I EAT THE LAST CHOCOLATE YOGURT"

"Mom, mom, where are you?" I guess I will stop yelling and go find mom and ask her, which will mean that I do not have to yell across the house.

I can just sit quietly wherever I am and listen, and let them come to me. Sometimes it also means that I do not have to get involved in fights or arguments. They can solve the problem before they can find me. I also can excuse myself from any long winded explanation of why the kids cannot do something, or why they have to do something.
For example, in a whisper "Teddy, time to practice piano"
Teddy says "But mom, 5 more minutes to do this one thing that you and I both know will actually take 2 hours and then I won't have to practice because it will be time to go to bed.."

I just have to give him the frownny face and tilt my head toward the piano, and he drags himself in to the piano... Because I am unable to argue with him.

Day 25 Let Go, Let God

2006-09-16T12:30:00.000-07:00

Learn from your experiences, right? So one month into my life as a person with a little cancer, what have I learned? I have learned to love my life, I have learned that bad things can happen to you, and I have learned that you have to trust God. God is the only one that knows the bigger plan, so praying has to be at the top of the priority list every day. I cannot take back the behavior of the past and I cannot change the cells in my neck, but I can take a really really big look at my life and know that I will be ok. This has to include dying, and that dying is ok. I just don't want to die this year, or even for many many years. When I do die, I want to know that God will take care of me. I want to know that my children will have a faith in God and that God will be there to take care of them.
Why did I get a little bit of cancer? I guess I will never know the answer to that, but I know that I will not forget the sleepless nights between CT scans and chest xrays or the days when I was sure that my headache is a brain tumor. I know that there is a purpose for my life and that God has given me a life for a purpose.
Was my diagnosis a miracle of God? I have to think that it is. God intervened and I went to the Dr. for a sore throat, and that sore throat was my miracle that cancer was in my body. Without that sore throat, the cancer would continue to invade and my body would have evetually surrendered.

Day 24 Accupuncture

2006-09-16T12:22:00.000-07:00

I know, accupuncture is completely hokey... but why not? I asked the Dr. and instead of looking at me like I was crazy he agreed that lots of patients think that it helps them. He has no idea if there is any scientific data behind the healing claims. I think it will help with my meditation.
So, I sent ahead some very detailed health info and a copy of my food journal for a few days. I met with Joyce in her cozy little office in the back of her house. She was warm and strong and serene and instantly I liked her. She had prepared an entire page of comments on my diet and suggestions on what I should add to my diet and what I should avoid. She suggested more soup and warm food because I am always so cold, that makes sense. She strongly recomended cutting out dairy - I am not sure if I know how to do this - I love my yogurt smoothies and bowl of cereal. Maybe I can cut down on the diary until this is over..?
Anyway, we had a really excellent chat and really connected. She didn't seem to strange, but instead a really great listener.
So, I took off my shoes and socks and went onto the table, which was like a massage table. The music was soothing and the lights were low, also her voice was quite calm and soothing. The needles didn't feel like much going in, and she did a few hokey things like burning some herbal thing on my belly button. Also, I have some tiny gold balls around my ear. Quite weird, and yet I feel really good. My throat is still very strained when I am talking but the soreness inside and the numbness outside is so much better. I don't know how to tell if it is the accupuncture of just the twenty minutes of rest on the table, I am going again on Monday ...

Day 23 Circle of Friends

2006-09-16T12:12:00.000-07:00

I am so incredibly blessed and grateful with my circle of friends. I am sitting on the couch having oganic throat coat tea in a beautiful new teacup and eating popcorn made by my husband from my new stovetop popcorn maker (because no more microwave popcorn).. it is luxurious and all gifts from my friends. I know that no matter what I need in the next few months I will have my choice of friends that are eager to help.
Peggy and Jack, in their quiet concerned way have been right there in the background. I know that Peggy is wanting to help and do something. Right now there is nothing to do, but I will make sure that she stays involved.
I think that for all of us, when faced with bad news and unable to express our thoughts and feelings, really we just want to be able to do something. It is Peggy's way, and I think that I take after her so much in that response. I love to help by doing something and sitting and trying to talk is not comfortable for me.
If only there was some way that people could help with this. Esspecially now, I am just waiting, letting my throat continue to heal so that I can zap it into injury again.

Day 22 My table at Starbucks

2006-09-16T12:10:00.000-07:00

For some reason I have always been very anxious about where my seat would be ... I mean in a restaurant, at a soccer game, at a parade, any event... I have to have a good seat even if it means stressing my family out and getting to an event an hour early. It is a stupid habit, and I am trying to let go.
I cannot let it go at Startbucks. I have a few tables that I prefer and if I don't get one of those places I become immedialty out of sorts. I have a specific table that I have become to think of as the "friends therapy couch". This is the table where I have met quite a few of my friends to tell them what is going on. I arrive early, and get my coffeee (although I have now switched to decaf) and then I stalk whomever is sitting at my table. I even prefer sitting on one side of the table so that I can watch the front door to see if anyone I know comes in.
I have had a long relationship with Dorothy and although our kids don't see eachother too much anymore we have made it a point to get a coffee together every couple of months. It is refreshing for me to know such a committed christian that can still be a fabulous liberal politically. I hadn't seen her in over a month and we both we so happy to finally have a chance to catch up. Again, I had no idea how to tell her. We sat down and she immedialty launched into school issues and Marvin updates and how her job was going. I knew that I had to tell her and so.. there is no gentle way. It just kills the conversation. I need to stop sitting at the table at Starbucks... it sucks.

Day 21 Meditation Monday

2006-09-16T04:10:00.000-07:00

Today is September 11, and a day for the world to pray for peace and strength. Also, to pray for terrorist and evil, that they may find peace. Lee went to the memorial in Boston today and was really affected by the sadness and grief felt throughout the city. Teddy continues to ask about that day and I was able to explain to him a little more. I also told him about Karen Martin, and our special relationship with her, and that we will always remember our day home from Guatemala with baby Teddy and what an important figure she was on that special day.
It is also a day that I am trying to learn to add a formal time for meditation each day. In the past I have tried to have a special time to prayer, and I couldn't seem to do this. Reading a scripture or contemplative reading was easier for me to try and remember God each day. I also wanted meditation to be different from prayer. These days my prayers are incredibly pointed and selfish. I wanted meditation to be truly a silent time and time to focus on the energy in my body. I started with setting a timer for 3 minutes. Not such a long time, except it was sooo long. I tried not to focus on thinking about how many minutes might have passed, and instead I tried to focus on my strong body and my cells healing and the bad cells flying out. I was also chanting, in my mind, some healing words. I am going to try and do this everyday. What's three minutes anyway?

Day 20 Power of Prayer

2006-09-16T04:09:00.001-07:00

While I have been very hesitant to tell too many family and friends about what is going on, I couldn't wait to tell my prayer group at church. Although, actually I didn't tell them right away. I guess that I had to wait to see them. Also, I didn't want to tell them in a group, I am feeling really uncomfortable telling more the a few people at a time. I think it is how to start... my general approach has been, "you know that throat thing..its a little cancer" which immediately stops the conversation.
Anyway, so we had a back from summer vacation church breakfast today, and everyone was there. We were all so exciting to see eachother again that I spent a lot of the morning hugging, something I usually can't do too many times. My moms were great and I told a few of them and I know that they will rally to help me. We start back to our weekly groups next Friday. I am hoping that I do not have to talk too much, but I would love to get some healing prayer time.

Day 19 Exercise Again

2006-09-16T04:09:00.000-07:00

It is incredible how great and sexy I feel after 20 minutes of weight lifting. My arms act like they are reborn and although my cardio is pretty bad, I was able to get through my favorite sculpting tape. I have 2 weeks until radiation and I need to really focus on strengthening and building up my energy. I would love to be back on track by Christmas. I am already feeling nervous about skiing this year, the thought of all that cold air on my throat scares me. Maybe I can get Lee to do another beach vacation...?
Lee is in training for the marathon, and that always raises the exercise awareness level in the house. It is hard to sit around and watch tv on Sunday afternoon when Lee is out running 20 miles.
The motivation is slowly coming back, I have to keep remembering how great my clothes fit this spring and how it working out feels good when it is over...

Day 18 Second Opinion

2006-09-16T04:08:00.001-07:00

It is very hard for me to trust my Drs. They have assured me that they have each reviewed my scans and xrays, and that there is nothing else. I have such a fear of getting this again in a few years and it is worse and is has spread, because a Dr. forgot to read the slides.
So, because I live in Boston and because we pay a lot of money each month to health insurance I am getting a second opionon. The ocologist said, Why not?, if you have the time and the insurance, it can;t hurt. The ENT Dr. said, Why? you have a little thing, don't panic your life.
What would you do? Am I making something more of this that it really is, or I am playing it safe and making sure that it is not really a big deal... maybe I just like Drs. sticking a tube up my nose and down my throat...

Day 17 Make the Mask

2006-09-16T04:08:00.000-07:00

So, I went to the local cancer center today and got to park in the special patients parking spaces, which felt not so great. There was a bald woman leaving the space next to me and she gave me the stare down as if I didn't belong in those spaces. Another woman in the waiting room had a pink ribbon tatooed on her ankle, her sign to the world of her battle.
I am nervous today because for the first time I am at an appointment alone. It is a strain to talk and I am afraid I will forget to ask something. This is the place I will be coming to 33 times. I get a little ID card with my picture on it. Also, encoded on it will be the top secret directions for the laser beam.
I met with the radiation therapist, she was quite nice, but quite routine. She actually has a check list of warnings that she had to check off to document that she had not forgotton to tell me things like, don't get pregnant and this might hurt a little. Anyway, it sounds like it will be very routine for the therapist here.
Then I had to go into the MRI machine, with a wet, molded net mask covering my face and neck. This will make a mold of my face, so that I lay in the exact same position each time, so that the laser beam goes right into the tumor sight. It is quite amazing. The technician left me for a while and the table, which had been moving alot was suddenly very still. My mind was going really fast and I had a few breif panic moments. What if she went to lunch and left me here! I knew that would not happen, but it was scary to be trapped like that.

Day 16 Thanksgiving

2006-09-16T04:07:00.001-07:00

I am alive for another day. I think of those who aren't
Coincidence is God's way of remaining anonymous
Spirituality leaps where science cannot yet follow, because science must always test and measure, and much of reality and human experience is immeasurable.
Perhaps the only limits to the human mind are those we believe in
St Francis Prayer
Grant that I may not so much seek to be consoled, to be understood as to understand, to be loved as to love. For it is in giving that we receive, it is pardoning that we are pardoned and it is dying that we are born to eternal life

Day 16 Paranoia?

2006-09-16T04:07:00.000-07:00

So where do I go from here? Do I become paranoid about my children? Yes, I think for things that I can control I have to be. Health wise I know that I have to keep that a priority to the house.

Day 15 Just a Little Cancer

2006-09-16T04:06:00.000-07:00

so, relief relief relief. We didn't find out in the morning, so sitting with the intake nurse we learned (very casually) that I have a little Stage 1 tumor. The surgery had removed the tumor but because of the location, on my vocal chord, it was impossible to know for sure that the surgeon got all the bad stuff. So, the good news following the bad news, is a little radiation, a few weeks of a sore throat and just as suddenly as I had cancer, I won't.
As scary as just a little cancer is and just a little radiation is, the relief sitting in there with the nurse is huge. I found myself grinning at Lee, look I don't have brain cancer! By Christmas this will only be a few pages in the journal, yet it really is life changing to know how vulnerable you are and powerless.
I met the ocologist today, he looks like he is barely 20 years old, incredibly nice and really spent some time with us.

Day 14 Inside Outside

2006-09-04T04:06:00.000-07:00

Tomorrow I will know for sure whether this is going to be a big deal or a little deal.
Do I call in the morning? Does Lee call? It sure has been excellent having Lee make all the phone calls. I have an appt with the ocologist at 1, should I wait until then?
I keep picturing a scene, as if from the movies, with Lee and I in the plush Dr.s office and the Dr. apologizing and explaining that there is nothing he can do except give me morphine for the next 6 weeks....
On the outside, my body has been so strong this year. That will be good for the fight going forward, that I am strong. I have been trying to keep up the pretense of exercise even though I haven't really felt like it. I have been working on meditation techniques and visualization.

Day 13 Tell the Friends

2006-09-03T04:05:00.000-07:00

From the very begining I have been anxious about telling people. I knew that I didn't want to tell Larry and Kitty. I'm not sure if Lee has told his parents. I am trying to keep this as a little "blip" in my life and then I will move on. Really, it shouldn't be a big deal.
So, despite my instincts to tell no one, of course, I have to tell my friends. Telling is also so ackward. I started with Susie and found that there really is no good way to do this. My voice is so weak on the phone, so that makes it harder. Anyway, I told Susie, after she told me what a great day she is having, should I have waited? Is there ever a good time to tell? So, after I said it "just a little cancer" she was shocked into silence and then started crying.
It is so strange that I ended up apologizing as if I ruined her afternoon and her life. So, sort of the reason why it is so hard to tell is then you have to tell it again and again. So, my decision is really to keep the number of my friends that know very small and controlled. I can't think of any reason to be open about the details. I am uncomfortable with Buker School knowing at all. I don't want to change my life anymore than is absolutley necessary. So, no one will know except that I'm not talking, and what if it really is in my neck and my brain...Can you really hide that?
On the other hand, there are certainly some changes that I will have to make. I have already stopped drinking.. easy. Also, I have been reading a lot about fighting cancer diets. So I will have to make a real effort to bulk up on fiber and brocolli and tomatoes. The good news is that it really is food that I already love. In addition to alcohol, I will have to give up my beloved microwave popcorn. I love it, but it is gross and certainly cancer causing.
Does getting throat cancer make me more or less susuptable to other cancer?

Day 12 Rainy Day

2006-09-02T04:05:00.000-07:00

We are home and it is raining. This is adding to my bad mood. The plane home is quick, but it is still a long day.. public bathrooms, in and out of security, buses to pick up the car and then we raced home to get Lexi before they closed (which is making me happy - being home without LooLoo would make me feel much worse).
Lee is still giving me lots of hugs which is so nice and makes me feel less shaky. I am moving about the house as if I have been away for years. This was a very hard vacation.
My irrational side wondered if this was my last vacation ever, and I meant to be smiley and happy and hug my kids alot and give my husband wonderful memories. Instead I was cranky and distracted and had major moodswings. I would hug my kids and then go sit in a chair and stare at the sky for an hour.

Day 11 The Vacation is Ending

2006-09-02T04:02:00.000-07:00

and I am ready to head home. It has been a long week for me. I have been pretending that all is well and we are on a regular family vacation and then I am also spending a lot of time on the computer, surfing and reading and getting ideas. Part of me is realizing that you just follow along from appointment to appointment and then part of me wants to understand how I can use the internet to have more control.
Although I am usually fairly strong at work, I feel timid when talking about this and not understanding what I can control.
When I get home tomorrow I will still have a few days of puttering before school starts and I go back to work, so more of the same, laundry, go to the computer, dishes, computer, play with the kids.. Call the Dr??

Day 9 - 10 Disappearing Symptoms

2006-08-31T04:04:00.000-07:00

It has been 2 weeks since surgery and finally I am feeling like myself. I am ignoring the back ache because I have been sleeping in a strange bed all week, and sitting in broken beach chairs.
My throat feels good and the numbness in my neck is better. I have not yet found my voice. I must admit I am enjoying not talking. I can just smile and nod and be silent. The boys just come and find me in the house because if they yell they are learning that I am not yelling back. I am wanting to exercise again, and I am pretending that I am 100%, although I am not sure that I am there yet. I keep remembering how great I felt this winter and the fabulous strong arms that I had and flat stomach. I can get back to the stage and I keep waiting for the motivation to be there. Also, part of the denial is being able to workout. I ran 2 miles this morning and pretended that it felt good... but it was hard.

Day 8 Hope

2006-08-30T04:03:00.000-07:00

Of course I am doing what every American under 60 would do... constantly surfing the web, all the time. I am going to be a survivor and my story and my trauma is going to be small relative to what so many go through. I am not sure that makes my issue any easier to deal with today, but what I have learned from surfing is that I will survive, my discomfort will be small, my kids might never know, I can keep working. I will even get to take a few naps. I am hopeful and I do believe in God and the power of prayer and the strength of my body.
The internet is full of great stories and also bizaar remedies. Do I believe that 5,000 mg of solenium a day can do the same thing as a huge zap of radiation for 33 days? The cancer hospital web sites are different, although they are friendly and factual and inviting, they are not hopeful and do not advertise survival.
The Dr. is back from vacation today. My CT scan is ready for him. I am in NC, but the power of the cell phone, I can call him any time, from right here under my umbrella at the beach. If the Dr. doesn't call, is it because it is bad news and he doesn't want to ruin our vacation? Is it because it is the good results, as he expected, no problem - no need to call. Maybe he hasn't even seen the results, he won't look until I call to ask him?
As I sit here on the beautiful beach, watching my boys jump in the waves, completly at peace in my ignorance, Do I want the Dr. to call?

Day 7 Denial

2006-08-29T04:02:00.000-07:00

Is pretending to be healthy the same thing as denial? I have been trying to be quiet all week and whisper and rest my voice. I told Larry and Kitty that everything went great and I just have to rest my voice until I am healed. I did not want to talk about it all week, or remind them that I used to smoke. It is a funny feeling to be pretending that it is all behind me and I am healing when I know that the worst is still ahead of me. My throat is throbbing - is that the healing or has the surgery set free all the cancer cells and they are invading me?

Day 6 In the Middle of the Night

2006-08-28T04:01:00.000-07:00

I can't remember if I had these muscle aches before. My legs keep falling asleep and my butt hurts. Is it from too much sitting, too much travel, or that horrible night sleeping at Larry's house? My hair is everywhere, Am I shedding after seeing the bald woman? I keep thinking of her and imagining her children. What would Teddy do? Who would take care of Josh? I feel like I am Josh's only ally in the world - who else can get him through the day? What would happen to my family?

Day 5 What is a Cancer Survivor?

2006-08-27T04:01:00.000-07:00

What is a cancer survivor?
I saw a bald woman today, with a baseball cap covering her head. I spent a long time looking while trying not to let her notice my staring. I tried to picture myself without hair. Would I be a wig wearer or be proud to show my shiny head?

Day 4 On Vacation

2006-08-25T04:00:00.000-07:00

The plane was cancelled at Logan today and then we were rerouted to Atlanta and then our plane was switched to land at BWI. We will spend the night with Larry and Kitty and then drive to Williamsburg in the morning. So, after 5 exhausting hours in the airport (yea GameBoy!) we were airborn. I am relaxed and yet my mind is constantly obsessing on the possibilities. When the turbulence got a little strong and the plane was bouncing I imagined that we crashed.
Then I wouldn't have to die without my family.

Day 4 Can I Leave it all Behind?

2006-08-24T03:59:00.000-07:00

My Dr. is on vacation this week and when he returns I will be on vacation. The CT scan results will not be available until he is back and I am gone. I can call from the beach...
After the phone call agony on Tuesday, the nurse insisting on the Dr. calling back, the long phone cal between Lee and the Dr. waiting for the biopsy results. I think that I do not want to know anything on vacation. Just agree to not discuss, not obsess about the making the phone call and what day should we call, and then what happens if the Dr. is not available that day..
I want to be in blissfull ignorance on my brain tumor for another week. Also, I know that I would focus on the day the results were due and would be sleepless and frenzied until Lee was able to reach the Dr.

Day 3 The Next Test

2006-08-23T03:58:00.000-07:00

Do you get drawn into this incrementely? Step by step you become an expert on ER terminology, really what is the difference between a CT scan and an MRI? well, now you know.
The CT scan is scary. Lee came with me and I was tense and anxious, sure that I had brain cancer and I was crying while the nurse put the iv into my arm. The man ahead of me had his lungs and torso scanned and I kept trying to peek into the control room to see. I have been so very quiet , partly because it hurts my throat to speak loudly, also because it is so much easier to let Lee do all the talking. I don't have to ask out loud all the scary questions.
Lying on the table for the scan I kept my eyes shut and tried to do some positive visualization. I also wondered about all the other people that had been on this table, good news or bad news?

Day 2 Who to Tell?

2006-08-22T03:57:00.000-07:00

Tell no one. Live your life and look back next year knowing what you have acheived, how strong you are.
Tell... when you don't make it to book club, everyone will talk about it. It will be all your fault for smoking and be dismissed. You brought it on yourself.
Don't tell... pretend?
Tell.. get help, get pity
Definetly tell church, you need some prayers, quick.