Amber Chase's Musings on Cancer and Life

The CRAZY girls in my family!!!!!!!!!!  They ROCK!

     A year ago I turned 29.  I wondered, and was a little doubtful, that I would make it to my 30th birthday.  Well, I DID!!!!!  I turned 30 today.  It seems like we partied all weekend.  My family (my dear wonderful sisters did most of the planning from what I hear) threw me the most fabulous surprise party on Saturday.  I had NO IDEA that this was even in the works. 
       My mom had told me that my Grandma L. wanted to have one last family dinner at her house while the weather was still good, plus my Aunt Jan would be up from Vegas because my Grandpa L. had a heart procedure done this last week.  So, we show up to my Grandmas house, late of course.  When I walked into the backyard, there were like 3 cameras pointed at me.  I looked around at everyone, and then everyone shouted SURPRISE.  Everyone had PINK hair.  They either had spray painted , or dyed, or got pink hair extensions.  SO the first thing that went through my mind was that they were throwing me a party to show support for my battling cancer. 
       Then everyone started to sing Happy Birthday, and it finally clicked in my head that it was a surprise Birthday party for me.  I was so overwhelmed, and happy, and touched that all of my Aunts, Uncles, Cousins, grandmas, grandpas, brothers, sisters, would all come and show their love and caring for little old me.  I am so glad that everyone came.  It was so nice to get hugs from you all, and I just felt so LOVED.  It was so sweet, and I really needed that. 
     Everything was TINKERBELL.  I had the most adorable Tinkerbell cake, balloons, and plates.  I felt so special.  My parents gave me a Tinkerbell porcelain doll, with fairy dust.  Maybe I can use it to fly to neverland, and then I will never have to grow up.  Plus I bet they don't have cancer in Neverland.  I love the Disney Fairies, and Tinkerbell has always been my favorite.   Bekah and Abby are really jealous, I think.
     Everyone gave me the most thoughtful gift.  I received a $200 gift certificate to a local spa.  The list of all the heavenly sounding services just made me so excited.  I figured out that there is enough that I can go get a facial and a pedicure, foot massage etc.  once a month on my week off from chemo.  I will be able to look forward to a special pampering each month, and that will help me get through the hard weeks.  I can't wait to go the first time.  I am going to have to talk my mom and sisters into going with me at least once.  I think it will be a lot of fun if we go together.  My next week off is the week of October 6th-12th.  I do have an MRI that week, and a follow up doctors appointment with the radiation oncologist, but we can still fit in some spoiling and pampering, right girls!?
      Last year when I turned 29, I said that the next year when I turned 30 I wanted a RAGER of a birthday party.  I had assumed that my cancer would be a bad memory, and that I would be healthy, stable, and fine.  I didn't expect to get a brain tumor, and be back on chemo again so soon.  I told Dan not to throw me a party right now, because I just didn't feel like celebrating.  I told him we could have my 30th birthday celebration after I was done with this 6 months of chemo.  I know he felt bad because he had been planning a party for me with all of our friends and his family etc.  So everyone, plan on a 30th year celebration sometime in the Spring.  We can celebrate my 30 1/2 birthday. 
    
     

Here we are as a family at my Birthday party.  Unfortunately Blake was gone to his Dad's this weekend, so he wasn't able to be there.  We need to photoshop him into the photo.

Here I am with my sweetheart Dan.  I was an emotional wreck, crying and upset all day, and Dan took the day off from work, so he had to put up with me crying and being sad all day today.  I was a little down because I am dreading chemo again, my hair is falling out like crazy, and this just isn't what I had pictured for my life at this time.  Plus because of the STUPID steroids I have to be on because of swelling in the brain, I have gained 15 pounds in 3 weeks.  It just isn't fair!!!  I don't eat that much, and I feel sick all the time, and yet I have gained weight.  YUCK.  My hair is all falling out, and pretty soon I am going to just look like a fat bald old man..  So depressing!!!!!   It comes back to that HOPE thing again.  I just need to remember that and not focus on all of the hard, difficult things, and focus on all the good things that happen.  Even if it just a simple hug or kiss!!!!!

This is a beautiful, soft, breast cancer fleece blanket that my Aunt Stacy and my cousins made for me.  It is absolutely adorable, and I can't wait to snuggle up in it when I don't feel good.  I have always wanted a breast cancer blanket, and this one is perfect.  Thank you so much guys!!!!!

I also just had to share these pictures of my cute kids at the party.  I love them so much, and they are what keeps me going through the hard times.  If I didn't love them so much, and want to be here to be there mother, and hug and kiss them, and spend precious moments with them, I wouldn't go through all of this pain and suffering.  They are my everything, and I am grateful for everyday that I get to spend with them.  I just hope I live long enough that little 2.5 yr old Ammon will remember me...........

Thanks to everyone else who spoiled me rotten today. I received so many nice phone calls from Family members and friends, and sweet touching cards from so many friends, and thoughtful gifts.   I got to enjoy lunch with a bunch of gals from my ward, and Annette, thank you for buying my lunch.  I got treats from friends, and pampering gifts, lip gloss from Nancy, soft fuzzy socks, sweet Alice wrote me a poem, and a Henry B. Eyring book from Nola.   My sweet friend Kristin brought me some bright cheery balloons,  Krystal brought me some rice krispy treats (YUM!) My dear mother in law made me the softest silkiest most beautiful blanket and pillow cases and rice heat bag.  I know it will be heavenly to wrap up in it tomorrow after I get home from treatment.  My sister in law Rachel sent me the nicest letter, (you made me BAWL) and gave me some money to buy myself something fabulous!  My other sis-in-law made the CUTEST card, and gave me some more super soft, fuzzy warm socks.  They are pink, and oh so cute!!!!  I even got a phone call from my brother in law Ben, who is on a business trip by Hershey Pennsylvania.  (He told me that he is going to bring me something from Hershey.  He knows what I LOVE)  Dan got me some soft Halloween socks, and also a LIBRARY card.  (We have NO MORE room on our bookshelves to buy anymore books.  I love to read,  So now I can check out books, and not have to find a place to keep them.)  He also took me shopping on Saturday for some new clothes, and bought me some of my favorite shower gel, chocolate scented, YUM. I can enjoy that, and it won't make me put on even more weight!!!  My parents also got me the softest slipper socks, and some new cute PJ's, because when you are going through chemotherapy, you spend more time wearing PJ's than clothes.  Plus my dad took me to Salt Lake on Friday to Beethovens 9th Symphony, ODE to JOY.  It was phenomenal!!!   I enjoyed it so much.  My brother in laws mom even gave me a gift, the most beautiful sketch of Christ, plus a CD that their family recorded of songs to help and encourage.  I was so touched that they would send a gift for my birthday.  See, I told you that I was spoiled.  I am sure that I am forgetting other gifts, but I think everyone is just trying to get all the presents in while I am still here, because who knows how many more birthdays I will actually have.........
     I really appreciate it all so much.  At the times when I feel sad, I love to go back and read all of the kind words you all write, and it gives me so much strength, and your love and support truly lifts my burdens and helps me feel better.  I feel guilty sometimes because everyone does so much.  I feel like I don't deserve it.  I haven't done anything special. I just have cancer, I certainly didn't choose this trial, and I'm not as strong as you all seem to think I am.  I just do what I have to do to survive.  I can't believe I am putting this out there for everyone to read, but I just don't want everyone to think that I am something that I am not.  I cry a lot.  I cried a lot today.  I am sad.  Having cancer is hard, and I really wish that I didn't have to go through all of this.  I pray and study and try to figure out why, and I have moments of peace and comfort.  But there are moments when my heart aches, and I feel like I can't do this another day....  I try my best, and I hope that it is enough.  But please know that I am weak, and scared, and  not as strong as you all seem to think I am.  I do feel better saying that.  But now you know the truth.  I am hoping that because this is such a long blog journal entry that no one is actually going to read this last paragraph.  And if you did, well, now you know the truth. 

I can honestly say that this last month have been very difficult.  So many people commend me on my optimism and good attitude, but I have just been having a hard time feeling that way this last month.  Words can not express the fear and frustration of knowing that I now have cancer in my brain.  It's bad enough that I have cancer, but before I held out hope that having cancer metastasized to your bones couldn't kill you, and my lung lesion has stayed tiny, so I thought I was sitting pretty.  It really threw me for a loop to know that I have a brain tumor, and brain tumors kill.  So scary, so depressing, so difficult to deal with.  I have been trying to find my happy place, and just can't quite seem to get there.  I guess the stress and side effects of doing chemo again, plus the brain radiation with all that pain and discomfort, I am just trying to get back up off my butt and start walking this road one baby step at a time again.  I am not superwoman.  I am not happy and brave all the time.  I cry.  A lot.  I still have faith, I just need to refocus it, and start acting on it. 
As far as prognosis goes, and I am sure you are all wondering, we asked my oncologist, and he said that he thinks I should be here at least another year, and hopefully 2-3 more years.  On one hand that sounds like a short time, but I can do a lot of living in that time.  And who knows.....  Maybe in a year or two there WILL be other treatments that can even extend my life longer. 
    My chemo treatments are already starting to kick my butt.  My mouth has the most awful taste in it, and nothing tastes good.  I have neuropathy beginning in my hands and feet already.  As of now it is just the numbness and tingling, but I have the fun stinging shooting pain to look forward to.  My hair is already starting to fall out.  I had a big chunk of hair fall out last night.  I think it was from the radiation dose as well as the chemo.  So in the middle of the night, I am chopping at my hair trying to cover the bald spot in the back.  Sheesh. 
It is really frustrating when the treatments make you feel sicker than the actual disease.
Sorry to be such a downer.  Just trying to keep it real, and let you all know that I am not perfect at having this cancer.  I struggle, and fear, and doubt, and get mad, and occasionally I even let the words, "Why do I have to do this again??????"   escape from my mouth. 

How grateful I am to have a lap top, so even when I am lying in bed feeling sick and miserable, I can have the pleasure of typing it up to share with everyone.  I have been meaning to post this entry for a week, but every time I sit at the computer, it makes my head hurt too bad, and I get dizzy and blurred vision, etc.  So, even though I am posting this now, the following entry was from August 19th.

I began aggressive weekly chemo again last week.  I decided to keep a journal of the days events so I can share what a chemo day consists of.

August 19, 2008
This day, began at 7:30 a.m.  I had to be to the hospital by 8:00 a.m.  My appointments will consist of A LOT of waiting.  The first thing I did was go to the lab to get blood work done.   This is done to ensure my body can handle the weekly dose of poison, I mean chemo. 
    Then, I get weighed in, and wait and wait to see the doctor.  He is a really great doctor, and he will take whatever time you need, however this translates to a really long wait while he takes the time to talk to all the other patients.  My appointment time was 9:00 a.m. and I think I finally saw the doctor at 9:45 or so.   Really lucky for me!!  Sometimes the wait can be  up to 2 hours!  Thank goodness for an early appointment time. 

We had a really good discussion with Dr. Hansen about my prognosis now that I have brain mets.  He believes that if treatment is successful again as it was with the same drugs, plus with all of the other chemo drugs that are available for breast cancer, that he should be able to keep me here at least a year, and hopefully a couple of years.  Of course, this is just best case scenario.  I could die in a car accident on the way home from the hospital.  But it is nice to know what "usually" happens with stage 4 cancer, and what to expect.  This round of chemo will be 6 months of 3 weekly treatments, followed by a 1 week break in between cycles.  I have a LONG road ahead of me. 

After I visit with the doctor, I go to the infusion room.  This is a room jam packed with 15 recliners, plus a bunch of old ratty chairs for your visitors to sit in.  I don't know why this annoys me, but it does.  I feel like they should have more comfortable chairs for your support people, and more privacy.  It is now 10:10 a.m.  I am settled in my chair and just waiting to have my IV started.

Once you are in the infusion room, you have to wait to get "hooked up".  Sometimes this takes a long time, sometimes it is quicker.  The oncologist mixes all your drugs by hand in what Dan likes to call "his kitchen".  It kind of reminds me of a mad scientist in his lab.  My drug cocktails include:  Anzamet, Aloxi, Dexamethasone, Benadryl, xantac, and those are only the PRE meds!!!!

After all of those are ran with a bag of saline, then the chemo drugs start.  First is my  Hercpetin infusion.  I will only be getting the smaller weekly dose again instead of the every 3 week dose.  The weekly dose takes about 30 minutes.

Then the next drug is Taxol.  Because this drug is more toxic, it takes longer to run the IV.  It takes about an hour.  The first week of the 3 week cycle I will receive Zometa, the drug for my bones.  This IV takes about 30-45 minutes.  On the 2nd week, I only get Herceptin and Taxol.  On week 3, I get a double dose of Herceptin, and a single week of Taxol.  Then I get a week off so my body can recover.  Confusing?  Yes.  That is why I take note of what drugs they are supposed to give me, because the nurses are so busy running around helping all the people receiving chemo, and every patient gets a different cocktail.  If I don't keep track of my own stuff, sometimes the nurse will give me the wrong premeds, or run the IV too fast or too slow, or forget to put a filter on the IV tubing, you get what I mean!

1:00 p.m.  Almost done.  I have watched the slow drip, drip, drip of the IV and the slow tick, tick, tick of the clock.  I am now pale and drawn and just don't feel good.  I feel like I want to jump out my skin (I am told this is from the Dexamethasone, steroid).  I am ready to be done, and go home, and crawl in bed.

Here I am, bored, tired, and just starting to feel the effects of all of the drugs flowing through my system.  I just pray that they are killing cancer cells while they are ravaging my healthy cells. 

Here is Dan.  He comes up to the hospital to bring me lunch, and keep me company.  He waits until I am done with treatment, and then he takes me home.  I am afraid I am usually not very good company.  I get kind of ornery, and just want quiet, and we all know that Dan has a hard time being quiet!!  I love him anyway!!

Now just waiting for the nurse to come unhook me from my IV.  My mom and Dan always remark the vast difference of how I look before treatment, and after.  It is just really physically draining on the body to go through this.  Usually by the evening of chemo, my hands and feet are burning, I am tired, yet antsy.  I have so many side effects, and then have to take pills for those side effects, that cause more problems and on and on.  I don't even know what "normal" feels like anymore.  I guess this is my normal. 

Here it is, 1:30 p.m. and I am almost going to be outta here.  My mom has been stalwart and steady, with me every visit.  Lots of times with her cell phone up to her ear, she keeps all of the family in the loop.  You can see the clock in the background.  Can't wait to get home and crash. 

I had a whole thing typed up about how I am feeling, and then I hit the wrong key and it disappeared.  Basically what it said is that I feel sick.

Back in June when my tumor markers went up and the doctor recommended going back on chemo, I didn't want to because I felt pretty good.  Well, I don't feel so good anymore.  I am tired all the time, and feeling dizzy and nauseated from the brain tumor.  My bone pain isn't being managed very well, and I just feel lousy.

So, I know feel that my quality of life is bad enough to warrant going back on chemo.  Most my days are bad right now, they are just cancer induced bad.  Once I start chemo, they will be chemo induced bad.  It is what it is. 

I was able to scrounge up enough energy to go with my family to the fountains at The Gateway in Salt Lake City.  We rode the train down, and let the kids play in the water.  It was a lot of fun, but it took too much energy.  I spent the next day in bed all day because I was so worn out.  I am grateful that I was able to go and make more memories with my kids.
Only 4 more days until I begin chemo again.  I am not looking forward to it, but I am ready.

Over the past couple weeks, 2 women battling the same type of breast cancer who were diagnosed at almost the exact same time as me have passed away.  My heart breaks for their friends, families, husbands and children.  I can't help but ask myself, why?  Why am I still here, and they are gone?  Why did my first battle of chemo work, and theirs didn't? 

Of course I know the sunday school answer.  Heavenly Father has a plan, and only he knows how long we will be on the earth to accomplish our purposes, and learn and grow and be tried.  There is just so much guilt that I feel because I am here, and they are not.  They both had husbands and young children that needed them.  Why did they die, and not me?  Am I accomplishing the things I need to, am I doing the things I should?  Am I learning and growing?  I like to believe that I am.


It is almost time to start aggressive chemo again.  I can feel myself getting sicker as my tumor load grows. I am in pain and discomfort a lot.  I am weary and bone tired, all day.  It is hard to find energy to do even the most simple of things.  More areas are hurting.  My stomach hurts all the time, and I am not digesting food.  It is just going straight through me.  There are some concerning changes taking place along my mastectomy scar line.  It is getting inflamed again, and bumpy lumpy and itchy, along with stinging pain.  I think the start day for Taxol will be sooner rather than later.  Probably August 19th.  At least that is just right before school starts.  Time for battle number 2.  Hopefully it works effectively and quickly!!! 

We are going to HOT HOT HOT St. George the beginning of next month.  When it is that hot outside, swimming feels wonderful.  I get a lot of relief from my bone pain by floating in the water.  We also hope to see a Tuachan outdoor theater musical while we are down there.  I am hoping for the Sound of Music.  That was one of the first musicals I ever saw, and I love the music for it.  Bekah is also hoping to get a lot of school clothes shopping done.

Well, this rambling post is all over the place, but it is 2:30 in the morning while I am typing this. Dan is gone to Scout camp with Blake so he isn't here to tell me to turn off the computer and go to sleep.  I guess I probably ought to anyway!

So, if you are the praying type, please pray for the sisters in cancer who passed away, Andrea Collins (aka Punk Rock Mommy) and Kim Frankin (kimmie39) and their families.  I know Heavenly Father hears and answers prayers.  We may not always get what we ask for, but we always get what is best for us.  Because He loves us.

To start, I would like to apologize for my previous negative post.  I really try my hardest to not focus on the negative, but every once in a while, it is hard to see past the negative of cancer and treatment.
In my previous post I focused on the bad things about having cancer and treatments, so for this post I am going to focus on the positive. 
                                              Positive things about cancer and chemo
1.  Easy to get ready for the day with no hair to comb.  Just pick a hat or wig, put it on, and away you go!
2.  All of the help I receive.  Last time I was on chemo, I had friends, family and church members bring in dinners three times a week, babysit my kids every afternoon so I could rest (and spoiled my kids rotten!)
3.  Lots of help with cleaning my house.  My house hasn't looked this good since I had just 2 kids to keep up with.
4.  All of the pretty flowers I received.
5.  Last summer, the weeds in our yard would miraculously disappear!!!!
6.  My yard makeover.
7.  Yummy treats dropped off just because from friends and neighbors.  I don't think there was a time we didn't have a plate of cookies or treats on our kitchen counter.  And no matter how lousy I felt, cookies and cupcakes always tasted good!!!!
8.  I get to take a nap every day, and no one thinks badly of me for it.
9.  Having a handicap parking permit. 
10.  Not having to shave my legs!
11.  Quick weight loss, I lost 20 pounds in 5 months. 
12.  Gaining a stronger relationship with my family.
13.  Not taking things for granted, like every breath, every heartbeat, and every moment.  I now treasure every moment with my children, reading stories, playing games, watching movies, eating dinner together, going on vacation together, laughing and joking around.  Each of these moments is precious.
14.  My sisters taking turns watching my kids every week when I went in for treatment, and my mom and husband sitting with me through all of those hours and days at the hospital.
15.  Having my faith in Jesus strengthened, and all of the miracles that came out of handing Him my burdens, and having Him help me through all of those hard days.  I know I wouldn't have made it through those hard months without Him.  And I know that I will be able to make it through chemo again, if I put my trust in the Lord.

I just need to remember the scripture "I can do all things through Christ which strengtheneth me." Philippians 4:13

Paragraph.

I have been asked a couple of times why I am delaying starting aggressive chemo again, even though my Dr. thinks I should.  I don't like to complain, but I though maybe if I explained a little more the side effects of chemo, it will be easier to understand why I am willing to risk more cancer growth by delaying.

Right now the side effects of cancer are pretty intense pain in my hip and back, that is managed fairly well with pain medicine.  The medicine does make me tired, and I am tired to begin with, and don't have a lot of energy.  The pill I take every day, Aromasin, has made my joints in my knees and hands ache and hurt.  Because of going into menopause, I now have arthritis in my shoulders and my knees.  This showed up on my last scan.  So, the biggest challenge right now is pain, which can be managed. 

I was so sick, and miserable, and tired when I was on Taxol.  The night I had treatment, my hands and feet felt like they were on fire, they would burn.  My legs would hurt so bad, I almost couldn't walk.  I had such horrible diarrhea that I would literally spend hours in the bathroom.  This caused bloody oozing sores on my behind.  My stomach had so many cramps, and it hurt so bad.  Food tasted bad and metallic.  Everything I ate went right through me, my digestive system wasn't working.  The nausea was managed with pills that put me to sleep.  I got sores all over the inside of my mouth and throat, I had to use a special toothpaste to keep my gums from falling apart.  I had sores in my nose.   I would curl up into a ball on the bathroom floor and cry I was so miserable.  The nerve damage that treatment caused was painful.  My hands and feet tingled and burned, like pins and needles.  Every step I took felt like I was stepping on needles.  This was cumulative, and got worse the longer I was on treatment.  My blood counts got so low, I had to have shots to boost them.  I was SO TIRED.  Some days I hurt all over so bad I couldn't even get out of bed.  My memory was shot, I couldn't remember friends names, or even conversations I had with people.  I was dizzy all the time, and I couldn't read because it made me too dizzy, and I couldn't track words along the lines on pages.  (Those of you who know me, know I LOVE to read, so this was very frustrating).  The steroids they gave me made me bloated and swell, and even though I was so tired I couldn't sleep.  I was wired and agitated.  Not to mention losing my hair, including eyebrows and eyelashes. 

The side effects from treatment started to subside after a couple of days, and I usually felt quite a bit better for the 2 days before treatment again, but then it was time to start all over again.   I did 17 rounds of this. 

So, this is why I am going to wait to start aggressive chemo again.  Even though the cancer is active, and growing, and spread to a couple of new spots, I have to weigh the risk of waiting compared to what my quality of life is.   There is the risk that the cancer could spread to somewhere else, but I am still on the  Herceptin and Zometa, plus Aromasin, and I have faith that those treatments will keep the cancer in check so it doesn't go totally crazy in the next 6 weeks. 

The treatment for the disease is sometimes worse than the disease itself.  Right now that is the case for me.  If the cancer was spreading in my lung, or in my liver or brain, I am sure that I would feel worse, so maybe rushing into treatment again would be the lesser of two evils.  But as things stand right now, even though my doctor would prefer that I start aggressive chemo again right now, I choose to wait.  Maybe it is foolish, maybe it is tempting fate, but life is too short to be sick like that again.  Sometimes it comes down to quality over quantity.  I have read too many times about women who restarted chemo, never to be able to stop again.  Just in case that is the case for me, I want to enjoy some good quality time with my children and family right now. 

Just a quick update.  Amber started chemotherapy yesterday 5/21/2007.  She is feeling pretty good considering.  Her legs have really been crampy and sore.  They gave her something for nausea so that has not been as much of a problem yet.  She will have another dose on Wednesday, 5/23/2007.  After that she will settle into a weekly routine of Wednesday chemo appointments.  The schedule is three weeks on and one week off for four to six months.  We continue to be humbled and amazed at the capacity of our friends, family and church members to show Christlike love toward Amber and our family.  Thank you so much...we love you!