Amber Chase's Musings on Cancer and Life

   I began my chemo pills again last night after having several weeks off.  It has been 4 weeks since I have had IV chemo either.  It has felt so wonderful to be able to eat and enjoy food, enjoy family events, go on vacation, and have a little more energy  while I have had my little chemo break.  
     Having metastatic cancer causes so many problems by itself; pain, fatigue, stomach issues etc.  When you add chemo, you  just add a bunch of other problems.  During my chemo break I was able to do so many great family things like my sister in law's wedding, going out to dinner as a family, going to the Draper temple open house, and of course our vacation to St. Maartin.  
   As much as I have enjoyed my weeks off from chemo, it is time to start the fight again.  There was a part of me that really didn't want to start chemo again.  The chemos that I am on only has a 20% chance of slowing the cancer.  I realize that if I don't take chemo, I have a 0% chance.  As difficult as it is to suffer the side effects, I feel like I have to TRY to do my part in fighting this disease.  I need to know that I did my part to be here for as long as possible for my family.  
    I am being a glutton for punishment this week. Not only am I doing my oral chemo pills, I am going in for IV chemo today.  I figure if I am going to be sick, I may as well double up and be really sick all at once.  Plus I had to have an  infected ingrown toenail removed yesterday.  Due to chemo my nails grow all wonky, just another lovely side effect of my cancer treatments.
    Needless to say, I am going to be flat in bed the rest of the week.  My sister in law brought me some movies including the Anne of Green Gables movie series.  So, I am going to have some great entertainment!  I am always so grateful for all of the thoughtfulness of friends and family.  My family and I am taken such good care of.  I am always so grateful for the meals brought in, and thankful for the friends who take my little boys every afternoon so I can nap.  If we weren't taken such good care of, I know I wouldn't have the energy to fight! 

First of all, i want to thank all of my blog readers for your love and support.  I appreciate your words of encouragement and support, and for not looking down on me because I am weak sometimes.  Thank you!!
I was archiving my blog this morning, and I came across a post from last January very similar to my last post.  There just must be something about this time of year that triggers feelings of despair and sadness.  I am still struggling emotionally right now, but I am trying to refocus and change my perspective.  I need to remind myself that if you look for negative, you find it, but if you look for positive, you will find that too.  I have been focusing too much on the bad things about cancer, and have forgotten all of the good things.  For example, I hate that I can't cook and clean, but I am so grateful for the kindness of others cooking and cleaning for me.  See, it is all in the perspective.  I am going to try harder to focus on the good and not the bad, and hope that I can find strength and faith to deal with cancer and all of the hard things that go along with it.
   I am off to the oncologist today.  I didn't cancel my appointment .   I will have herceptin and Zometa today.  I should have been taking Xeloda this week, but I haven't been able to bring myself to take it.  I am having a hard enough time dealing with life right now without adding all of the side effects and misery of one more thing.
   We took the kids to Chuck E. Cheeses last night for a fun family home evening activity.  They all had  a really good time (even though it exhausted me).  Another good thing is American Idol starts tonight!!!!  Yippeee!!!  See, I can still enjoy life even though I have cancer.   I just need to remember to take the time to enjoy the little things, and quit feeling sorry for myself and focusing on all of the things I can't do. 

It has been a while since I did an update on how I am doing and how my treatments are going.  This is an "on" week, where I take Xeloda 3000mg a day for 7 days.  I began the 7 days Sunday morning.  I asked the Dr. for some better nausea medicine, that way I won't be as sick this week.  I had Herceptin and Zometa on Dec. 23rd, so I was pretty tired on Christmas.  I have had to increase my pain meds because of increasing pain in my left hip, and also right shoulder.  The tissue on my right chest wall and the cancer in my shoulder area seems to be growing.  I am having circulation problems in my right arm, and the Dr. think this is because of cancer blocking my lymph nodes on my right arm.  My hand and arm are purple sometimes, and I have pins and needles and pain in my hand and arm.
    I am always very fatigued, and will take long naps during the day.  I feel like I am just missing life as I sleep the day away.  I hate feeling tired, and wish I had more energy.   
   I also have been having localized pain in my head, as well as occasional vision problems.  I am holding out hope that this is just from damage from my original brain tumor, and not a new one.  I had a brain MRI Monday night at 9:30p.m.  I will be anxious for the results, and hope that I get good news. So, that is what has been going on, and I will post once we get the results from the brain MRI.    

I received this great plaque from Sharon R. and Michelle S.  I saw this saying at Sharon's house and loved it, and she and Michelle so kindly made one for me.  It is so appropriate, and a reminder that we can do things that are hard, even if they seem impossible!

We had an interesting conversation with the doctor Wednesday.  I pitched my idea of discontinuing the Gemzar, and then taking the rest of November and December off from chemo.  Not a good idea, I guess.  Dr. H. was okay with me quitting the Gemzar because of the horrible side effects, but if I were to take 2 months off from systemic chemo, the cancer would most likely spread and be harder to get under control.  
      So, the new plan of action is to try an oral chemo called Xeloda.  From what I had read about this drug, I was certain that this was one drug I DID NOT want to take.  The side effects are pretty bad and numerous.  Besides the standard nausea,  vomiting, diarrhea, mouth sores, stomach aches, flu like symptoms, body aches, bone aches, muscle aches, stomach cramps etc.  it has a nasty side effect called Hand and Foot syndrome.  The palms of your hands and the bottoms of your feet become red, rashy, burning, itching, blistered, and raw.  There are steps you can take to reduce this, like using certain creams at night and wearing specials socks and gloves.  But still, come on, I'm going to willingly swallow pills that cause these side effects???  Really, though, what choice do I really have?  We asked Dr. H. if I didn't do any more chemo how long I would have left and he said 4-6 months, and it wouldn't be pleasant.  As the cancer progressed, I would be more miserable than what any chemo could cause.  Well, when you put it that way, I guess I will try the chemo.  
     The good thing about the chemo is it is easy to change doses if the side effects are too bad, and we worked out a compromise where I would take it 1 week on, 1 week off instead of the standard 2 weeks on, 1 week off.  Also, there is another chemo pill that usually is prescribed together with Xeloda called Tykerb.   But when you add Tykerb, it makes the stomach side effects even worse.  The plan is to wait to add the Tykerb until after Christmas.  This way I am doing SOMETHING to battle the cancer, without hopefully compromising too much quality of life.  

     Tykerb is another drug for HER2+ cancer, and it will take the place of Herceptin.  It attacks the cancer in a different way than the Herceptin, which is good because it seems like my cancer is either too numerous or no longer receptive to Herceptin like it was at the beginning.  I am praying that I have a "miraculous response" to these new chemos like I had at the beginning with the Herceptin and Taxol.  
     I also had tumor markers blood test done Wednesday.  It will be interesting to see what they are.  I also had a flu shot, and of course, murphy's law, my arm got all swollen and I have a red inflamed area about 4 inches in diameter, and it hurts and burns and itches.  At least I'm not sick from chemo.  This side effects of just the Herceptin and Zometa I received is just some bone pain, and tired and no appetite.  My red blood counts were also really low, but only .1 higher than what they have to be so insurance will pay for a Procrit (red blood cell production boosting) shot.  No wonder I  am so tired!
    Oh yeah, for those of you wondering about our Las Vegas trip, it was very relaxing.  I spent A LOT of time napping, and resting, and we enjoyed a couple of shows, eating at some great restaurants, visiting my Aunt Jan and Uncle Trent, and sleeping.  It was really nice to get away with Dan and be able to have time to talk and enjoy each others company. 

These gorgeous flowers sent by my Aunt Jan were waiting for me one week when I got home from Chemo.  They cheered me up, and were the most beautiful pink flowers that stayed pretty for a long time.  The picture just doesn't do it justice!

  Tuesday Oct. 14th I started the new chemo cocktail of Herceptin, Zometa, and Gemzar.  I was at the hospital for 5 1/2 hours on Tuesday.  The Gemzar infusion takes 1 1/2 hours, the Zometa takes 45 minutes, and Herceptin takes about 30 minutes.  A lot of the time is spent waiting to see the doctor, waiting for the doc to mix your meds, waiting for the nurse to hook up your IV, waiting for the nurse to switch drugs etc.  
    Everything went well with the infusion. I was really tired when I got home and fell asleep for a couple of hours.  I woke up about 10pm with chills and horrible stomach cramps.  I spent the night fevered, chilled, shaking, and in the bathroom.  This continued through Thursday.  Finally by Friday the fever and chills were gone, but I still couldn't eat anything, and was relying heavily on nausea meds.  Thankfully family members took all of my kids so I just had to take care of myself (lay in bed and wish that I could die) and no one else.  From everything I have been able to read online about Gemzar, this reaction usually only happens the first time, and then subsuquent treatments are a lot more mild.  I think the new poison is just really hard on your body the first time.  Today, I am still really weak and tired, but I actually was able to eat a banana! 
     If I get this sick every week, there is no way that I can do this chemo.  I have to weigh quality of life versus quanitity of life.    I hope that this week will be better.  There is a gal who goes every Tuesday like me and only has Gemzar, and she said she is a little achey and flu like only that night and the next day.  I think I can handle that, just not the 4 days of sick. 
  As I was laying in bed this morning, Caleb asked me when I was going to be done with chemo.  I told him I didn't know, but I hoped I wouldn't have to be on it too long, because it was boring laying around and being sick all the time.  He responded, "You are a boring mom right now.  I like it better when you are a fun mom."  He made me laugh and feel sad at the same time.  I hope I can still be a "fun" mom even on chemo. 

Well, that title is misleading, because the mask was made of titanium and plastic, but I sure felt a glimmer of what it would be like to be the Man in The Iron Mask.  Even though I had to wear that stupid frame thing, it was for a specific, GOOD purpose, but it still felt so demeaning and inhumane.   I can't believe that it has been 6 weeks since I had gamma knife. 
     I have put off blogging about my Gamma Knife a.k.a Stereotatic radiosurgical treatment.  Gamma Knife is brain surgery without the knife.  They use radiation beams to destroy the bad cancer cells in the brain, leaving most of the rest of the brain tissue undamaged.  I slept through the actual gamma knife procedure, it was the PREP for it that was terrible.  I have found that the prep for MOST of these tests, and treatments etc. turns out to be worse than the actual procedure. 
     When I found out I had a brain tumor, for the first time since I was diagnosed with stage 4 inflammatory breast cancer, I felt completely hopeless.  I felt like I was secure in my illness, I felt like things were under control, and when I received that phone call from my doctor, I felt deep, heartbreaking, gut-wrenching sadness. 
       Anyway, the actual gamma knife treatment was painless.  It was getting the shots of numbing medicine that was incredibly painful.  I was supposed to receive some drugs in an IV to send me to La-la land, but I didn't receive them until right as the neurosurgeon was injecting numbing medicine into my head prior to screwing the frame into my head.

In this picture you can see the nurse injecting my relaxing, la-la land medicine, right as they were prepping my head frame. 

For the radiation planning, they put this lovely plastic helmet on, to measure the angles of radiation.  I felt ridiculous in this get up.

This picture is the tray of screws they use to screw the frame into your head.  I am glad that mine weren't the big huge long ones.  you can see which size they used in the empty spots on the tray.

Don't I look absolutely pathetic?  I was so miserable with the frame.  It was so uncomfortable.  There were two screws in my forehead, and 2 screws in the back of my head.  I couldn't rest comfortabley because of the metal around my head.  I can't even find the words to describe how I was feeling during this whole procedure.

Here is a closeup of what the frame screwed into my head looked like.  I was so swollen and sore for weeks on the spots where the screws were.  I couldn't turn my head, and I had four mini headaches where the screws were.

This picture is of what they attach to the frame for the MRI, CT scan and actual radiation.  It attaches to the head frame, so on each machine your head is in exactly the same place.  This way they make sure they are accurate in their planning of the radiation and the actual radiation.  Luckily I was able to sleep during most of the scans and actual radiation. 

Here I am on the machine where they do the radiation.  I lay on the table and the round part opens and then they beam high dose targeted radiation at the tumor.  I am not sure how the whole thing works, I just hope it did!  The radiation onc. told me that there is a 70% chance that I will have more tumors grow, and even though the radiation has a high success rate on treated tumors, there is a high likely hood that after a period of time, treated tumors may start to grow again.
      

These are the screws that were in my head. 

Here I am after I was all done.  I felt like the hunchback of notre dame.  I had all these weird misshapen lumps on my head for weeks after like Quasi Modo in the Disney version of Hunchback.  It is hard to see in the picture, but I had big fluid filled bumps from where they injected the numbing medicine.  As time passed, those lumps moved from my forehead down t my eyes, and I really had a swollen face for weeks after.  At least my eyes are finally back to their normal shape, because I had a lot of swelling around my eyes and eyebrows. 
     I am so nervous for my brain MRI today.  I see my local radiation onc, on Wednesday.  After already having bad news with my other scans, I am so scared that my brain MRI will be bad news as well.
    So that is my gamma knife experience.  I really don't know if I could do it again.  I guess I will make the decision when and if I have to. 

    I received the results of my PET-CT scan on Tuesday when I went for chemo.  We got to the hospital at 11:00a.m.  After I signed in I went to medical records at the hospital to get a copy of the PET-CT scan report so I could read through it and be prepared with knowledge of what is going on when I saw the doctor.  I was not surprised with the results of the scan, but I was disappointed. 
    I have widespread new tumor growth, and the tumors that were stable are now metaboically active.  I have new tumors growing around my right lung, my right shoulder and humerus, and all over the right chest wall.  I had hope that the swelling in my arm was from something other than cancer, and I had tried to think of all the reasons why I could have swelling and pain, but it is in fact cancer.  I have cancer in my lymph nodes in the jaw, armpit, collar bone and neck. I have cancer growing in my right hip and pelvis, as well as the hottest most acitve cancer is in my left hip.  I have been on strong pain meds and I am still in so much pain!  The cancer is growing in my thoracic and lumbar spine.   Suffice it to say, the chemo (Taxol ) is not working. 
      I requested to see the Doctor, not the PA, so we waited an hour and forty-five minutes, and who should walk into the room, but the PA.  Of course I tried to ask her questions.  She thought I should wait and do another 3 week cycle of the same chemo, but if the chemo hasn't worked after 2 months, I don't think it is magically going to start working.  We (me, my mom, and Dan) were really frustrated that we had waited so long, and Dr. H was too busy to see us..  It is so annoying that drug reps don't have to wait as long as patients to see the doctor.  We're the ones who are paying the doctor, and we have to wait FOREVER....  Anyway, that is a whole other issue.... 
     Because I had waited so long and Dr. H didn't have time to see me right then, we decided to go ahead with my regularly scheduled chemo (taxol and herceptin).  Then when Dr. H had a minute I would go into a room so I could talk with him about the new plan of action. 
     At 4:00 I was finished with my treatment, and we finally had a chance after waiting a little while to see the actual oncologist.  He did a thorough exam, and after seeing what was going on with my chest wall, plus reading through the scan report, he agreed (DUH!) that the chemo was not working.  He gave me a couple of options for the next chemo to do:  xeloda and herceptin, or gemzar and herceptin.  There also were a couple of other drugs we talked about taking after I do a 6 month cycle of the previously mentioned drugs; Avastin, tykerb, adryacmyacin, and taxotere.  There are a lot of treatment options and combos out there, we just have to find one that can work against my aggressive cancer. 
     I am so scared that this is the beginning of the end.  I am worried that when I have my brain MRI on Monday, it will show new tumors in my brain.  I am worried that I am never going to be off chemo again, and it will be continually changing and trying different chemo combos to try to keep the cancer under control.  Getting bad news like this is so scary.  I just feel like there is nothing I can do, and the cancer is invading and growing, when I wish it would just go away.  This is so difficult.  I hate bad news.  I wish I could just say that everything is going to be okay, but I just don't know anymore. 
    I get next week off from chemo, and will start the new treatment the next week.  Dr. H's first choice is the Gemzar & herceptin along with the zometa for the bones.  Gemzar is supposed to be a pretty mild chemo, and it doesn't cause hair loss.  Go figure.  I lost my hair for nothing.  I am trying not to focus on that, and trying to think of the positive of loosing my hair (cute new wigs, and hats etc.) but when it comes right down to it, I would rather still have MY hair.  It is what it is.  That is my mantra.  It is what it is. 
    At church on Sunday, we had  a Relief Society lesson about worrying and fear, and there was a saying that was shared that has stuck in my head:  "Why worry when you can pray?"  Worrying about all these things isn't going to change what is, and what will be.  So instead of worrying, I'm just going to pray.  I would appreciate all of your prayers as well. So, we're not going to worry, we're just going to pray.
    Another thing that I keep on thinking of is:  No matter how bad you have it, someone has it worse.  And no matter what trials you are facing, you can always do something for someone else, whether it is a smile, a card, a phone call etc.  I have found that as I have tried to think of others this week, even though I am disappointed in my bad news, I can still find joy and happiness.       
     And also, it is so hard to feel sorry for myself when so many people do so many small acts of kindness to show that they care.  We really are so blessed, and Heavenly Father is looking out for us, and this is His plan, and He will provide for us, no matter what trials or burdens we are called upon to bear. 

    I am big.  I am bald.  I sure don't feel beautiful, though.........
I was listening to my ipod while I was at chemo on Tuesday.  I have the soundtrack to Hairspray on it.  I was laughing inside when I heard the song that Queen Latifah sings on it called "Big, Blond, and Beautiful"  I thought that sounds just like me, except I am big BALD and beautiful. 
       Because of the steroids I have been on to prevent brain swelling from the tumor and brain radiation, I have gained 23 pounds in 3 weeks.  That is so depressing.  I took my last dose of steroids yesterday, so I hope that I stop gaining weight, and the weight I gained goes away quickly.  What is even more depressing is that I have gained that weight, and I haven't even been eating very much because I feel so crappy from the chemo.  You would think that if I have to go through all of these cancer treatments and be sick, at least I would loose weight.  Oh well. 
      I didn't want to be bald for my 30th birthday, so I prayed that my hair would last until then.  I trimmed my hair really short when it started falling out like crazy on Sept. 3rd.  The last few days I just put gel in my hair, and lots of hairspray so my hair was all stuck together.  Otherwise I was shedding hair EVERYWHERE.  SO messy.  I had to wear a soft knit cap when I slept because so much hair fell out while I slept.  Poor Dan kept on getting hair in his mouth at night.
    So, Monday in the middle of the night, I couldn't sleep.  I had taken a shower before bed, and when I washed my hair, I tried to rinse the shampoo out, and my hair just kept falling out, and falling out, and falling out.  I didn't want to shave my head ON my actual birthday (too traumatic).  So I went to bed, but couldn't go to sleep.  I finally got out of bed about 3:00 in the morning, and decided I was just going to shave my head.  But when I got out of bed, I tripped and fell and woke Dan up.  He helped me shave my head, and when I looked in the mirror and started to bawl, he just held me and cried with me.  This time loosing my hair has been a lot more traumatic. 
    Here are the kids responses to my "NEW NO-HAIR-DO"
Blake:  He just rubbed my head and said, FUZZY.
Bekah and Abby just gave me a big hug, and both told me they still thought I was pretty.
Caleb:  Mom, with your hair like that, you look just like Daddy's twin, and it is SO cool.
Ammon:  When I took my turban off and showed him my bald head for the first time (He was too young to remember about me being bald a year ago) he said "On Mom, put it on Mom."  and took the turban from me and tried to put it back on me.  I tried to have him rub my fuzzy head, (because he really likes rubbing Daddy's fuzzy head).  But Ammon won't even touch mine.  I think he will get used to it. 
   I will be brave and post a bald picture of me later, I just haven't had any taken of me yet. Maybe once I loose some of my steroid weight.  But here is a picture of my beautiful curls.  Maybe next time when my hair grows back in it will be pink and frizzy.  At least I know it will grow back.  And I ordered a couple more cute wigs.  I think I will just have to cover up the mirrors in the house so I don't have to look at myself.

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.