Day 96 Pay it Forward

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

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

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

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

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

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

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

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!

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

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

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?

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

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

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

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

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

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

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

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

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

Certificate of Completion

Day 76 Celebration and Yoga

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

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

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

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...

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

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

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

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

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

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

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