Day 35 Quack Watch

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

Day 34 Paper or Plastic?

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

Day 33 Had a Visitor

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

Day 32 Like a Big Bug Zapper

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

Day 31 Treatment Day 1

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

Day 30 Preparation

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

Day 29 Retail Therapy

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

Day 28 Learning to Listen

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

Day 27 What to tell the kids?

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

Day 27 Feeling Bad

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

Day 26 Kid Whisperer

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

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

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

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

Day 25 Let Go, Let God

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

Day 24 Accupuncture

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

Day 23 Circle of Friends

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

Day 22 My table at Starbucks

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

Day 21 Meditation Monday

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

Day 20 Power of Prayer

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

Day 19 Exercise Again

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

Day 18 Second Opinion

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

Day 17 Make the Mask

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

Day 16 Thanksgiving

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

Day 16 Paranoia?

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

Day 15 Just a Little Cancer

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

Day 14 Inside Outside

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

Day 13 Tell the Friends

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

Day 12 Rainy Day

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

Day 11 The Vacation is Ending

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