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...
Tuesday, October 31, 2006
Monday, October 30, 2006
Day 65 The Final Countdown
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.
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.
Sunday, October 29, 2006
Day 64 How Can I Not be Changed by All This?
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
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
Saturday, October 28, 2006
Day 63 Yoga Class
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...
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...
Friday, October 27, 2006
Day 62 Letting People In
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.
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.
Thursday, October 26, 2006
Day 61 The Learning to Say No dilemma
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.
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.
Wednesday, October 25, 2006
Day 60 Dysgeusia
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.
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.
Tuesday, October 24, 2006
Day 59 SPOHNC
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.
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.
Monday, October 23, 2006
Day 58 More Doctor Therapy
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!
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!
Sunday, October 22, 2006
Day 57 Doctor Drama
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!
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!
Saturday, October 21, 2006
Day 56 Gaining weight
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.
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.
Friday, October 20, 2006
Day 55 Close Talker
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?
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?
Thursday, October 19, 2006
Day 54 More behind me than ahead of me
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.
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.
Wednesday, October 18, 2006
Day 53 Healing Circle
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.
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.
Tuesday, October 17, 2006
Day 52 East and West
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.
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.
Monday, October 16, 2006
Day 51 Feeling Good
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,
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,
Sunday, October 15, 2006
Day 50 Halfway Mark
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.
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.
Saturday, October 14, 2006
Day 49 Self Help Queen
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..
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..
Friday, October 13, 2006
Day 48 Feeling Like a Complainer
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....
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....
Thursday, October 12, 2006
Day 47 October Sunburn
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?
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?
Wednesday, October 11, 2006
Day 46 Good Karma Beads
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.
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.
Tuesday, October 10, 2006
Day 45 Malox Cocktail
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.
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.
Saturday, October 07, 2006
Day 41-42-43-44
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!
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!
Thursday, October 05, 2006
Day 40 Side Effects
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...
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...
Wednesday, October 04, 2006
Day 39 On Giving and Getting Advice
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???
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???
Tuesday, October 03, 2006
Day 38 Remember what you have
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.
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.
Monday, October 02, 2006
Day 37 No longer silent
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.
Sunday, October 01, 2006
Day 36 More on Surfing
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.....
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.....
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