Almost Christmas!

Christmas is almost here.  The oven is preheating for the cookies.  The advent calendars (traditional, lego and online!) are all up to date, the lights are up the presents are wrapped, so let the festivities begin! This will be my second Christmas no in treatment.  Wow, who'd a thunk it?  I certainly didn't.  December has been busy and I have experienced some fatigue, but not much.  It has, for the most part, been great.  I took the boys to their first real big time musical, Elf.  We went with Grandma and Auntie Donna. They loved it and they were darn good.  As I was walking back to the car with them, I wasn't holding their hands with a death grip, I was following them.  They were discussing the play and video games to each other.  That is when I realized - they are little men.  My babes have shed.  Their legs are long and think about things and have opinions.  They can reflect on their behavior and school work when it is time for allowance.  They can negotiate and it is not SOOOO ridiculous.  They get jokes and understand teasing, well, most of the time.  Some funny things that happen this month:  Mason desperately wanted to go to the Nutcracker.  They discussed it in school, listened to the music, etc.  He knew the composer, Tchaikovsky, and everything.  So, he and I went.  Nolan happily stayed with Grandma and Grandpa.  Girls in dresses?  Men in tights?  NO THANK YOU!  After it was over, and we had finished our Mouse King Cookie, he told me that he thought there would be more talking.  I said, "No, not in ballet.  They tell the story by the dance.  That is why we read the story in the program before each piece."  Oh.  I figured he hated it, but he asked to go the gift shop and there he insisted to on purchasing a Nutcracker. Not the small one, by the way, the regular sized one.  He asked if he could borrow the money and he would pay me back.  Since I know he is loaded and never spends his money, I agreed.  I said, "You must have liked it if you want to buy this?"  "I loved it!  It just would have been better if there was a little talking."  Okay, well, let's fill out a comment card....NOT.  We then went to the Center House and watched the Christmas Train and headed home.  A date with my eldest.  What a perfect day.  

Now, for Nolan, well, he is five.  He loved Elf, but thought it was a bit too long.  He loved dinner after Elf and decided to split dessert by five; however, the pieces were not close to even.    There were four small pieces and then a huge chunk left for him.  When that didn't work, he just ate as fast as he could.  I do not think Donna got any.  She was still explaining the unfairness to him when he took the last bite.  Nolan also learned how to play the card game WAR.  Nice and appropriate for the holidays, no?  He very nicely invited me to a game and had dealt the cards and everything.  I played and then realized that they deck was loaded in his favor and when I mentioned it to him he said, "Mommy - I gave you an ace!" ONE ACE and all the twos, threes, and fours.  THANKS.  I explained how many things were wrong with the whole thing, but it didn't seem to do anything.  He has pulled many into his web, including Grandpa, but now, no one will play with him so he loads his deck, has three other piles of cards on the table and "plays for you."  Shockingly, he always wins.  After I told him that all of these actions were not what Santa was planning on - not sharing dessert, cheating, etc., he came to my room in the morning crying convinced he was going to get coal in his stocking.  We talked about the good parts of coal (which is a short list) and how maybe we can turn it around before Christmas.  

Oh, and then there was the moment of truth for each of us.....Mason and Nolan had be playing football in the living room.  When I asked if anything happened with the candle spilling, Mason and Mia said, "No."  I believed Mia, but Mason was shifty.  The next day I asked Nolan and he sang like a bird (trying to not get coal and turn around his behavior).  Mason and Nolan were playing football and the ball landed in the candle.  Mason was FREAKING out.  I told him that he wasn't in trouble, I shouldn't have put a candle there or lit it!  But, I also told him that lying to me was a bad idea.  I said, "I am your greatest ally, your greatest warrior, teacher, and guide.  I will love you always.  Do you want to screw all that up by lying to me?"  And, advice from Mother to Son, bites Mother in the ass.  Two days later, "Mommy, I have a question and you have to tell me the truth."  In a flippant way, I said, "Okay."  "Are you Santa?"  FRICK!  Paying attention now, "Do you think I am?"  "I don't know.  Everyone at school says their parents put the presents under the tree.  So, do you?"  I get quiet.  Pause.  "Mom?"  "Yes?"  "Tell me the truth."  "Mason, is it that you can't see Santa?"  "Kinda."  "Well, you can't see God or Jesus, but you believe in them."  "Oh!!  I get it!  (whew) Then, people that don't believe in Santa, don't believe in God or Jesus."  DOUBLE FRICK!  "Mason, NO.  Okay, truth.... it is complicated.....but I have something to read you....something a friend emailed me and I agree with it....."  So, I read a letter that a parent had written to her child about Santa.  A girlfriend from my bookclub had emailed me a couple years ago.  I have I kept it.....here is what I told him from that letter....

I am not Santa. There is no one Santa.

I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my mom did for me, and the same way her mom did for her. (And yes, Daddy helps, too.)

I imagine you will someday do this for your children, and I know you will love seeing them run down the stairs on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won’t make you Santa, though.

Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He teaches children how to have belief in something they can’t see or touch.

It’s a big job, and it’s an important one. Throughout your life, you will need this capacity to believe: in yourself, in your friends, in your talents and in your family. You’ll also need to believe in things you can’t measure or even hold in your hand. Here, I am talking about love, that great power that will light your life from the inside out, even during its darkest, coldest moments.

Santa is a teacher, and I have been his student, and now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he’s filled with joy.

With full hearts, people like Daddy and me take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is love and magic and hope and happiness. I’m on his team, and now you are, too.

Mason took it well.  I told him that we cannot tell any of this to Nolan.  Part of our job is to let him have the magic until he can understand it.  "I promise Mommy."  And, he has done a wonderful job.  My babes have shed.

May your Christmas be everything you hope and dream about and may your New Year be a healthy one!

Love, 

Angie with Grant, Mason, Nolan, Molly Moon, and Hannah June

Enjoying Remission and Mason's Birthday

Well, life is ticking along.  The first two weeks of remission I slept for most of them.  SERIOUSLY.  They told me the fatigue would come after two weeks and I was thinkin', "WOW, this is going to be bad!!!!"  The at the two week mark I was in great form.  When Hank asked me if I was fatigued, I replied with, "Yeah, for the first two weeks, but now I am fine.  I don't think those people have ever had chemo.  Not that I want them too, but that is FATIGUE!"  He laughed and told me that he would see me at my next scan - that is like Feburary......YIPPEE!  Got some other doc things going on...always do....fixing me from what all this has done to my body, but since I have a couple boundaries left, I am going to keep those to myself.  The house is good, I love cooking again, Molly Moon (kitty) is finally growing into her ear hair and Hannah has finally forgiven me for declawing her (after she climbed up my robe and was SOOOOOOOO proud of herself).  I am taking Mia again after school on Mondays-Wednesdays and all seems to be restored in the universe.  I was listening to the boys in the bath a few nights ago and they were saying, "Who is the one that makes all the decisions?  You know all the laws?  Oh, I can't remember, it is a girl.  The President?  No, that is a boy.  What is she called?????  A Secretary????  YES!  That is it!  A Secretary!"  Not so slow after all, those two!  Anyhoo, Mason's birthday was last Sunday.  He told me it was the best day of his life and I think it was!  One of the Mom's that came did little video.  It is better played on a PC, iPads and iPhone won't play the music.  Turn up your speakers and enjoy!  Love, Ang  Cut and paste this link in your browser....

http://secure.smilebox.com/ecom/openTheBox?sendevent=4d7a51784d6a51314d444e384d6a51794e5463794e413d3d0d0a&sb=1

Remission Today....

I started cyberknife on November 5th.  Above is a picture that a good friend posted for Mason and Nolan in his blog.  I love it!  The depiction is very accurate except for the person standing there.  When "Leora", the cyberknife machine, is in operation, no one is standing there.  Remember, this is HIGH dose radiation.  You are entombed in a room with 18 inch walls.  I have music and I can call to the operators to take a break.  Break you ask?  Yes, a break.  When I started treatment, we started on the spot with where the markers were "installed".  Leora was able to track my area perfectly and my treatment of that area took 29 mins.  It ends up being a little more because they have to line you up, etc.  So, I was on the table for around 45 mins.  The best way I can describe it is that I am a possum playing dead and I am being sniffed by a dinosaur that sound like R2 D2.  When we started treating my second spot, a voice came over the intercom and said, "Well, Leora can see it, but it will take an hour.  In addition, I have to wear a special shirt and have lights attached to my torso so that another machine can track my breathing so that Leora, all 2500 tons of her, can move the laser with my breath.  It is crazy and cool. This machine that is a bit noisy when it moves into is 150 different positions ever so gently moves with my breath.  I am thankful, but there is work to it.  On this spot, I spend 90 mins in one position.  The first treatment, I had to stop and take a break.  The second treatment, I got through, but I was like, "Leora, getter done because I am in PAIN!"  The days have flow by with 3 hours of everyday driving to treatment, driving home, coordinating childcare, etc.  I have been so tired from all the driving, from stretching like Gumby every night so that I can stay in one position which is not that comfortable on a hard table for 90 mins without a break.  I have been so involved in the moment of it all I forgot about today................................Today at 1:00pm I will be done with treatment and in remission.  Today I will leave that building and not have another doc appointment (after Thursday) for two weeks.  I will have Thanksgiving and Christmas without chemo.  Now, they tell me that I may get a cough which, knowing how I am, I will.  They also told me that in about 2 weeks I will be very tired and that I should cut my "to do" list in half for 60 days.  Tired?  Cough?  Bring it!  Today at 1pm, I will be free.  Love, Ang

It worked!

Happy day!  All three markers showed up on the scan.....I start next week!  And I found health insurance, even better than my last plan, thank you Brent!  Yeah!  And the soccer trophies got done in time for the last game, and Nancy is bringing dinner tonight, thank God, cause I have been at the Cancer center since 10:30 and still waiting for my last appointment.  Mason is warming to the word cyberknife, but that is because Nolan says it CONSTANTLY to scare him.  Gotta love brothers!  So when I was with Hank this morning, I said, "So, this works.  What do I do then?"  "We go the remission schedule.  I see you once a month and scan every three." he replies.  Unprepared for the simplicity of it all, I said, "Remission by Tuesday after next.  (pause) I think I can do that.  Yep, I am available."  Love, Ang

Wednesday went well

but we will not know if it worked until my CT scan on Tuesday.  So, Wednesday was the placement of my gold markers on the outside tissue of my left lung.  This will be how the cyberknife tracks the location of my tumor.  The other spot, or tumor, will be tracked by my spine.  There was one little slip up on Wednesday and they nicked my lung causing a small, and I mean small, pneumothorax or hole in my lung.  It hurt and I had to stay and have three chest x-rays until 4:30 in a room with a TV with no sound and I had nothing with me.  Mom got there at about 3:00 thank God to relieve my boredom and I didn't do much that night or Thursday.  So, grateful to eveyone that helped me with the kids and Beckey even kept them until bedtime and put them to bed.  I am feeling much better and we will see if it worked on Tuesday.  Prayers and crossing of the fingers and toes gladly accepted.  Love, Ang

Surgery day...

This morning I am going in for outpatient surgery.  They are putting in my markers for the spot in my upper left lung.  In the flurry of trying to get me scheduled and me saying I am flexible they called me one Monday and said,  "Hi, my name is so-and-so.  I am calling to ore resister you for surgery on Wednesday."  "Okay, great.  Do you happen to know at what time and where that will be?" I reply.  "I do not, but we can do this anyway."  "O-K-A-Y."  So, that is how it started.  She told me a nurse will call me on Tuesday about my medications.  I was thinking that is not going to work with my blood thinners.  Emails and calls were flying by the afternoon.  One doc said, "Just don't take it on Wednesday morning."  I was like, "That doesn't sound right."  (I stopped taking them on Monday morning.  Just in case.)  Finally, the edict came down - NONE UNTIL AFTER THE PROCEDURE.  Now, that sounds right.  Oh, and I also found out when the appointment was.  Then, my emails started flying.  A neighbor is coming over in a few minutes to get the kids up and ready.  Lunches made, homework done.  After school care arranged because it is early dismissal all week due to parent teacher conferences.  Beckey will pick the boys up, so I have all day to focus on this and get myself together before the kids get home.  Great week for Grant to be in San Diego, but that cannot be helped.  Last night, I told the kids what the schedule was and what I was doing.  When Mason heard Cyberknife he started to cry.  I explained that this was the beginning of the end of active treatment if all goes well and that we should be happy, but apparently just the word, "Cyberknife" was scary to him.  I got him better and we put the tooth under the pillow that he lost at school today.  He said, "I hope the tooth fairy knows it is under my pillow."  I am thinking, "Yeah, I hope she remembers it is under the pillow!"  Mason came in later with a bad dream, the cats followed him and everyone EXCEPT Nolan was in my bed.  Hanna June was sleeping right up against my back where the tumor is that they are going to work on - Africa used to do that. I cried a little, fell back to sleep, and woke up to be a very happy boy with his tooth fairy money. Wish me luck, Ang

Best flippin' news I have gotten in a long time....

So, after last week, more cancer in my world, not so sure on my scan - blah blah blah, and pleurisy  I was like a little lack luster showing up to my oncologist's office (Hank)  to discuss things.  But things started to turn around......I told him that I talked to my lung surgeon on Friday and he was like, "REALLY?"  So, then I told him about the pleurisy while he was on vacation which he quickly passed over when he learned I had a chest x-ray.  "Where is the chest x-ray - I want to see it!"  Some people like candy, so people like chest x-rays I guess.  As he was searching for the x-ray, he said, "Well, then you know that they want you to go over to cyberknife first."  "Yes, less damage, and good results in my particular case."  Then, I respectfully requested a different cyberknife doc.  I explained I liked the one I consulted with last year, but he was very by the book and quite cautious.  I explained I am pretty sure I didn't get here by staying in the box and not going ball to the walls ALL THE TIME and that is reflected by my team of docs.  Not very passive those guys.  Most of them are like, "Hit her as hard as we can for a long as we can."  Luckily, the surgeons that I have had are not that way, but aggressive and creative (hence I am not pooping in a bag....yet).  So, Hanks makes a phone call...mumble mumble mumble, I correct one thing......mumble mumble mumble......"Can you see her right now?"  "Yes.".....mumble mumble mumble.  Hang up.  "Okay, off to Cherry Hill with you and her name is and he rattles off this name and spelling.  I look at him like, "Don't have a pencil.....might want to slow down."  I get the name and off I go.  I know EXACTLY where it is.  I visited Shelly there once for her treatment and the snuck me back to see the machine and everything.  This  is before I was being considered.  I just wanted to see it.  It is SOOOOOOOOOOOO cool.  I go directly to the office, I meet her and she says, "Have you seen your scans?  You are going to laugh.  The spots are SOOOOOOOOOOOO small."  So, she went through everything with me.  We had  four (last winter), then six (in March), and now since chemo we have two remaining and they are the perfect case for cyberknife.  "I can help you and you will be done."  Odds?  90% chance that they never come back.  Treatment?  I will need some markers, so I have to wait four weeks after my last treatment with Avastin (10/1).  After the markers are place next the one spot, the spine will act as the marker for the second spot, I wait a week, get a CT scan, wait a week to calibrate the REALLY COOL LASER MACHINE, three one hour appointments per spot, and DONE.  Side effects - fatigue 0-60 days out that will last 60 days from onset and maybe, by rarely, a cough.  Things that can hold this up - insurance.  Yeah, but I have done that dance before!  DONE.  Remission by Christmas.  DONE.  I know there is still a 10% chance it won't work and I know one of those 10% people, but it is the best news I have heard in a while.  Happy Happy Day!  Love, Ang

After a morning at Swedish....

I have pleurisy again in my right lung.   It is amazing when you call on the way to the office with no appointment and your oncolgist is out for he weekend, that within 90 mins, you have a chest X-ray, talk to your lung surgeon from two years ago, have to nurses who know me determine pluruirisy and I am on the way home by 10:45.  Gotta love Swedish.  Thanks guys.  At least it is not a hole in my lung (that is where we started!). Still hurts like a mofo.  Love, Ang

Life moves on....

Today, I took my kids to school.  I don't normally, but Beckey had to work early, so I took them.  At the last moment, I put real clothes on, but it is not like I was put together - no make up and I forgot to brush my teeth - I know GROSS!  As we pull into the school for drop off Nolan little voice says, "Mommy can you park and go with me?"  My heart melts and I say sure.  Thank God I put on real clothes and I wasn't in my pjs.  Really should have remembered to brush my teeth!  Mason, of course, does regular drop off.  Mason NEVER has had a problem with going to school.  He hit those Kindergarten doors three years ago and NEVER looked back.  Nolan, my tough guy, turns out is a bit of a softy.  I walk with him and drop his backpack at the classroom door.  I tell him that I want to see what he does in the morning.  So, he shows me and then, like a light bulb going off in his head, says, "You are not suppose to be on the playground!" and physically pushes me back through the doors and we go back to his classroom.  Some of his classmates show up and want to play tag, but you can only do that on the playground.  Torn, Nolan drags me to this area where the parents are standing BEHIND THE YELLOW LINE watching their kids on the play ground.    So, picture this, our elementary school has 737 students.  Average is 450 in Kent.  All I can see is my little toe head bobbing up and down and OPPS way down!  He fell and, of course, did not want the playground teacher, he wanted me.  After we patched him up, the first bell rang and I walked him to his class.  He hugged and kissed me wiping his little eyes and telling me he would miss me.  I told him I would see him after school and not to forget that his goal is to get a blue card (Kids are issued cards at the end of the day based on their behavior - blue is the best.  Nolan wants a blue.).  The announcements started as I left and it threw me back to elementary school.  I always wanted to walk and Mom always wanted to drive me.  I did not quite get it until now.  I never remembered the problems that we must have had as a family.  For example, I have lost my insurance yet again.  The company is leaving the state and because of my situation, my options are limited, but not impossible.  Problem is finding it.  I have been working on this all week.  I just also found out about a person very close to me not telling me something that I, of all people, could help them with.  They should have told me.  While I was helping all these other people, I should have been helping them, but they didn't want to burden me.  Really?  So, now, more than a year behind we start.  In addition, I got my scan results.  No some improvement in some spots, less in others.  Chemo next week is canceled.  Back to the drawing board and consults with surgeons to see if we can get it out or change chemo.  Oh, I am making cards with Trina at 1:30 and then again tonight when the boys are at soccer practice.  Thank God Dawn is bringing dinner.  Have I eaten?  Make cards, get call from my oncologist while I am her bathroom having an attack, take notes, get out, work on cards, go get the kids from school, call in the parking lot to get appointments for my "new project" because let's face it my name opens up some door in certain places, hang up, need to cancel chemo next week and advise my team they are off the hook, get out of the truck and feel mentally exhausted, pick up Nolan and Mason.  (pause)  Nolan got his first blue card.   Still in the same "real clothes", no shower, did I brush my teeth?  No, I don't remember any of the problems my parents had when I was young, but I know that they were there to hug and kiss me when I reached a goal.  Maybe somedays they forgot to brush their teeth.  I never noticed.  I hugged and kissed Nolan and we went to get Strawberry Sundaies at McDonald's.  Soccer tonight with Dad.  I am going to do cards.  And life moves on. Love, Ang

Things I learned in the last five days....

Now, y'all may believe that I talk a lot, and I do, but I really don't get much of an opportunity.  My life is very quiet - especially every other week.  So, last weekend, I went to soccer for both boys - cheered/yelled for the team, visited with my Aunt on Saturday - talking, went to dinner with a couple neighbors - talking, went sailing on Sunday - talking AND THEN I lost my voice.  Not a little, but completely.  I can't make a phone call, I can't talk, I can't visit, I can't read to my kids, NADA!  I have learned that I love the sound of my voice and that you use it more than you think.  I tried to go through a drive thru out of habit - BIG MISTAKE.  And, yes, Grant has been in a little bit of heaven and even he is like, "COME ON!"  Just started coming back - THANK GOD!  Happy Wednesday, Ang