Cancer Journey

If you read , you know that I have had a big cancer med change.  After 3 years, I dumped Tamoxifen, as it was NOT the drug for me, and now I am going through the process of becoming POST menopausal by taking monthly Zoladex shots.  I will start taking Arimedex in a week.

Arimedex is an aromatase inhibitor that can only be taken by women who are post menopausal.  It inhibits production of estrogen NOT produced by the ovaries in the body, making sure none is left, which is the goal for us cancer survivors whose tumors are fed by hormones.

When I got my first shot last week, I searched the web for first hand stories of women who had been in my shoes.  I am one who likes to know what to expect, so reading others experiences and stories is always comforting to me.  I found some personal stories, but not many.  I thought I would keep a  Zoladex/Arimedex side effect journal not just for my own sake but for those who will come behind me wondering what they are in for.

I’d love to think there will be no side effects, and some women are that lucky, but most are not.  I don’t think one can expect to go from pre-menopause to post-menopause in the period of 2 weeks and not have side effects.

I apologise to the men reading my blog.  Lots of female talk….although…I know these very same injections are used for Prostate cancer in men to shut down testosterone, so if you are man reading this in the middle of that battle..WELCOME.  I know you have your own set of side effects that are not fun.  May God be with you and keep you well.

I also know Zoladex is often used for those who suffer with endrometriosis, so if that is you, WELCOME, and know that I have read your stories and my heart goes out to all the suffering and pain endrometriosis can cause.  I pray the shots work for you and relieve your symptoms.

On to my Zoladex Journal:

Day 1:
Sore from injection.  Immediate nausea, but I think this was due to the the shot brought.

Day 2: Sore at injection site.  No emotional symptoms.  I feel great!

Day 3: Bruise at injection site. I feel great!

Day 4,5: I feel good.  No symptoms.  I actually feel more than good.  I feel great and very emotionally stable.  Zoladex gives a burst of estrogen and testosterone the first week, then the second week is when it shuts the ovaries down.  I guess my body likes that burst.

Day 6: Starting to get hot flushes.  Not too extreme.  It is worse in the late afternoon/evening. I was  also teary in the evening.  I had reason to be, but I cried more than I normally would and was aware that I was reacting differently than I normally would.  Felt on edge during the day…less patient than normal.  Also took a 4 hour nap which has not been normal for me.

Day 7: Woke up very nauseous.  Headache.  Lightheaded and a bit of ringing in my ears.  I feel tired and want to take a nap at 10:00 am.  Looks like I’m officially on the ride to instant menopause.  Blech!

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So there is week one.  I am typing this in my pj’s from my bed.  I’m going to get up, get dressed and go shopping even though I don’t feel well.  I’m going to pretend I feel great and see if my mind can convince my body to feel better! (it worked)

Despite feeling icky, I still feel better than I did on Tamoxifen, and this is easier to take because I expect it.  To chemically shut down hormones and achieve such a fast menopause cannot be a walk in the park, so we will see how this next week goes!

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Day 8: Slight headache, no big deal.  Feel great emotionally. Hot flashes at night before bed.

Day 9: Woke up with slight nausea and headache.  Did not last.  Felt great emotionally.  Energy good.  Hot flashes at night. Not too severe.

Day 10: Same as day 9.

Day 11: Ditto.

Day 12: Woke up with hot flashes, but they did not last.  Felt great emotionally during the day.  Had pretty severe cramping in my ovary area.  It felt like ovulation but more intense.  Lasted a couple hours.    Had an emotional breakdown late in the day.  Argued with hubby and YELLED at the poor guy.  He would say he deserved it but my reaction was way over the top and I cried a LOT.  We were able to get it together…forgiveness, making up, making out….;)…and took the kids to a movie.

Day 13: Woke up with hot flashes & headache but slept great.  Head feels heavy today, ringing in ears, hot flashes gone by 10 a.m.  Energy low today.

Day 14: According to what I have read, I should be in chemical menopause by day 14.  So far so good!  I am pleased this shot has been easy so far.  I am nervous about starting the Arimadex, and I’m going to put it off a week so I can enjoy my birthday and Thanksgiving.  I will keep a journal about that drug, too, and let you know how it goes! Eek!

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Here is the verse God gave me this in church, and I am claiming it as I face the unknown of this shot and its side effects, and also the unknowns of how the drug Arimadex will affect me as I start it next week.  Love this verse…here are two versions.

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes. (Matthew 6:34 MSG)

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” (Matthew 6:34 NIV)

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Update:
I have been on Arimidex (aromatase inhibitor) for 2 weeks.  I am due for my 3rd monthly injection of Zoladex tomorrow.  I am doing well on both.  I have many hot flashes and that is becoming quite the nuisance, as I get really chilled but then immediately have a hot flash.  I take my hoodie jacket on and off all day long!  I will talk to the Doctor about this, but overall, I am doing really well and I am SO GLAD to be off the Tamoxifen.  I am no longer needing 3 hour naps! It is so great & I am so thankful.

 I was just noticing the last post I wrote on my heath was Dec 9th and I was a mess.  My right side expander was infected, my skin was so fragile and thin around the incision that it was opening and…I will spare you the details.  It was not pretty.  If you are dealing with reconstruction and have questions or want more details, please email me. 

I was told 90% of ‘exposed’ expanders fail, but my Doc decided to take a gamble on me.  He stitched up the opening, put me on antibiotics, and sent me home.

It was a tough week.  I could tell my body was fighting infection.  I did all I could on my part.  I made sure I got lots of sleep and did all kinds of crazy things to help my immunity through nutrition.

 ~juiced everyday, using beets and greens (recipes below–both delicious)

~drank green smoothies

~ate chia oatmeal to keep my digestion system moving

~made sure I got lots of plant protein

~took elderberry syrup all throughout the day (yum!)

~drank Amazing Grass Supergreens each day…a powder mix of kelp, chlorella etc.

~drank Emergen-C every day (high vit C powder)

~kept up on my Shaklee Vita-Strips (which is multi-vitamin, vitamin B, probiotic & fish oil)

~took large does Vit D (6,000 i.u.)

~took my antibiotic regularly and on time

I know this sounds like a lot, but I all tasted good except the super green powder.  I plugged my nose when I drank that!  Next time I will get the capsules!

I did notice my skin glowed with all those greens in my system.  I was tired, but my skin glowed!

I went back to the doctor, and although I had not run a fever and infection seemed to be staying under control, the area of thin skin was coming open again and looked angry at us.

Doc looked at me and said “time for surgery.” My heart sank, thinking he meant take the expander out, heal up the infection, and start all over.   Every situation like mine that I read about online did just this.  It was protocol, one that my doctor had prepared me for.

Then he was thoughtful for a bit, looked at me and said, “we are going to give you a fill today in the left, (which would even the 2 sides out, as the right had looked bigger from the start of expansions) and take another risk with you and put your implants right in.  You are expanded enough, lets just do this.”

I LOVED that idea.  I was planning on swapping the expanders for implants right after Christmas, so moving it up instead of starting all over sounded like a great plan.  I was nervous about the infection, I knew that if there is infection and you add a foreign object to the body (an implant) that it is very hard to control infection. But, I trusted my Doctor completely, and he felt comfortable with his plan, so I was all in.

If you have been following New Nostalgia’s Facebook updates, you know that my first surgery was cancelled.  We were on our way to Omaha (an hour long drive), got halfway there, and a nurse called.  It was Monday.  We had decided to go ahead with surgery just the Friday before.  The type of implants he was going to use on me were not usual, he only used them for reconstructive purposes, and had to have them flown in.

Nurse “Amy, are you on your way?  If so you need to turn around.  Your implants didn’t make it.  They are stuck on a grounded plane in Texas, delayed due to the ice storm.”

I didn’t know if I should laugh or cry. I pictured my poor implants freezing to death in TEXAS of all places.  The comments on facebook were so funny and lifted my spirits that day.  My fav?  “Well, better check the size of those implants when they arrive because everything is bigger in Texas!”  Ha!!

There is some truth to that.  Doc ordered a few different sizes, wanting to make sure we get implants that fit perfectly.  I was hoping for the bigger size but since surgery was happening sooner than we expected I was not expanded as much as I thought I would be.  Would those ‘bigger’ ones fit?

Surgery was put off for 2 days.  I will have to write another post about how God’s timing is always perfect.  So many wonderful things happened those 2 days.  God just rained down the blessings and multiplied my time and energy, constantly showing me it was ok to wait for surgery, and that He’s got this!  I did all my Christmas shopping in 5 hours at Target, my sister-in -law helped me wrap it all, and I was able to completely heal in those 2 days of a chest cold.  That was huge as the thought of surgery with a chest cold freaked me out.

I showed up for surgery on Wednesday a blubbering mess.  Oh the poor lady that had to check me in!  The tears were falling like a flood and I could not see where to sign my name “in case they have to do a blood transfusion…permission to resuscitate” — all those fun things that require a signature before surgery.  Todd had to deal with me in the car, so it was my Dad who I collapsed on in waiting area, making a mess on his shoulder.  My Mom then showed up and got an earful, too.  I was an emotional mess.

I had my 2nd Zoladex shot the day before, the one that shuts all estrogen down.  I think that added to my inability to control my tears, but I was also worn out, and very worried about the infection.  The site had become so ugly-looking and it scared me.  I was convinced that I would lose the expander and that infection would keep Doc from putting a new implant in.

The nurses kept saying it was ok to be nervous about surgery.  I tried to tell them it was not surgery that I was scared about, but waking up to the reality that we would be starting all over.  I’ve done surgery so many times that it is very familiar to me and I really was not nervous about all the things that happen before drifting off to sleep for surgery.  It was what I would wake up to.

When Mr. Anesthesiologist come in, I was so tired of being emotional and fighting tears that I asked him for the happy meds right then and there.  He obliged, and I don’t remember a thing after that, although my Todd said I was talking and answering questions.  So odd to have no memory of that.

I woke up pretty comfortable, but too afraid to ask the nurse how it went.  I did look down and it looked like I still had 2 lumps on my chest, but I was all wrapped up so I couldn’t tell.

She took me into recovery and brought my family in.  It was only then that I learned the best news!  I still picture my Dad standing there, looking handsome in his newly grown beard, telling me that Doc said it went so very well.

Doctor cultured the area and it came back NO INFECTION.  And… he was able to fit the larger size (335 cc high profile for those of you who care to know) in and all looked great.  I could not believe my ears!

My pain started getting worse as I was sitting there drinking my apple juice and eating my crackers.  I was pretty uncomfortable for the ride home but I didn’t care.  I had new boobs!  There was no infection!  What I had been freaking out over was thin, inflamed, dying skin, and all of that was removed. All turned out better than Doc had hoped!!

It has been a little over a week since surgery.  I got my drains out 2 days ago which was such a relief…they were very uncomfortable this time.  This was my Instagram picture and status the night before they removed them, one of my low moments:

“Rough evening. I’m over these drains and want them out. The tubing comes out at my sides and it feels so uncomfortable this time. I’ve had at least 20 intense hotflashes today and between them , these tubes, stitches, being wrapped in tape and gauze, and painful breathing, I’m wanting to run away from my body. I hope tomorrow is better! I know this is the end of my reconstruction but tonight I feel emotionally weak. I want my spunk back. #CallTheWaa-Bulance #bodyclaustrophobia #TomorrowsANewDay”

I can now sleep on my side (SO NICE!) and I’m so very happy with the results.  Not too big, not too small.  Nice and soft already.  Great shape.  My Doctor is amazingly talented and my God is so good.

After 6 surgeries, including my mastectomy with immediate reconstruction, I think we are done.  I still have stitches in that will stay until January 2.  Doctor is not taking any chances with taking them out too soon.  He used only external stitches, since what caused infection and the mess in the first place was my sensitivity to internal, dis solvable stitches.  Yep, he is genius to be able to do this with minimal external stitches only.

I am looking forward to getting these stitches out.  There is no pain where they are at the incision, but I am eager to visit Finkle Cosmetic Surgery Center.  I am treated like a princess there.  Never before have I had nurses who are so very caring and genuine, and I’ve had a lot of nurses in my life! I will miss seeing them every week.  Dr. Finkle and his team are the place to go if you are ever in need of any type of cosmetic surgery. They often have patients fly in from out of town and their website gives great information for those patients.  They have even seen a few famous faces, as you will see by visiting their site.

Thank you for coming along with me on this reconstructive road.  You all have been so amazing with your comments and prayers.

I’m meeting a new friend for the first time today.  She is newly diagnosed with breast cancer and is at the beginning of the journey, having to make lots of scary decisions and facing so much unknown.  It sounds like they caught it early, so hopefully no chemo for her, but the fear I know she is facing with a cancer diagnosis has caused me to walk down memory lane a bit.

I read back in the month of November during my battle, and this post brought on some memories and an overwhelming gratitude that I am here 3 years later, doing well.  Thank you Lord, for life, and for many good days!!

Here is what I wrote about what cancer patients consider a good day, back in November 2010:

I am so grateful it is the Friday after chemo!  This is always the day where I breath a sigh of relief, knowing I am going to start feeling normal again.

Yesterday was actually a nice surprise for me.  I woke up expecting it to be the typical, hardest day of my week (4th day after chemo) but, by golly, it wasn’t! (I never say “by golly” but it was kinda fun to type.)

Wednesday evening I was about to take my anti-nausea meds, and the label on the bottle caught my eye.  It said “may cause extreme drowsiness and blurred vision.”  I knew right away I would rather have nausea (as long as I could still eat) than to not be able to see or focus because of fog/fatigue.  I skipped the meds, and it made for a much more “clear” Thursday.  I felt somewhat productive since I didn’t have to lay in bed all day, although my stomach paid for it.

I have to pause and chuckle for a moment.  It is funny what one considers a “good” day when going through chemo… here are some examples of what I mean…

~~I  lost 2 toenails from chemo, but I still got 8 plus my fingernails, so its all good…

~~This film that forms on my tongue 2-4 days after chemo makes all food taste sicking-ly sweet, but I’ve learned if I scrape the heck out of my tongue, and gargle with a mouthwash that tastes like the deliciousness of Vicks Vapo Rub, my taste is normal again.  Tasting food=great day.

~~I’m tired, achey and I feel like I have the stomach flu, but I’m vertical, so its a good day.

~~My skull, jaw bone and sternum are doing their deep ache dance, but that means the meds are working and my bones are producing lots of red/white cells– oh happy day!

~~My lips peel for at least 3 days after treatment, but they are so soft and pretty by day 6.  Free lip peel? Makes for a good day..

~~My digestive system shuts down for 3 days after chemo, but I’ve figured out which foods get it going again, and when it happens… that, my friends, is a good day!

~~A crazy side effect of chemo is twitching.  As I lay there to go to sleep, my pinky toe will come alive.  Or, behind my rib, or my shoulder blade…it feels like popcorn popping right under my skin or bones.  Does not make for a fun night, but during the day it keeps me company, so that’s good, right?

I say all these things in the spirit of staying real with you all.

 I also say them, honestly, with a deep gratitude.  I feel so thankful I have been able to figure out ways to get around or deal with most of these minor side effects, and that I have not dealt with anything too serious.  God has been so very good!!

I now get why cancer patients are called “Fighters.”  There are so many things, big and small, that come our way, so we fight.

I have felt sad as many of these side effects of chemo and cancer seem like they just strip femininity away (hair, nails, lips, breasts, brows, curves, sleep).  But–I’ve chosen to see myself in a new light.

 I AM a Fighter and I have the God of the Universe along side me.  I have a new femininity, it is a fighter femininity.  It makes me want to buy combat boots and wear car-gos (my favorite do-rag right now is a camouflage one:)) and kick this cancer outta here!

And for those days when I just can’t seem to find the good or the fight, you all step in with your words of encouragement, and He steps in with His Word of Truth, and reminds me that even in my weakness, I am strong.

Isaiah 40:31

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Philippians 4:13

For I can do everything through Christ, who gives me strength.

 

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Aaa!  It is such good perspective to look back and see how far God has brought me.  I will write a health update soon on the I got and how I am doing with the side effects and instant menopause.  Bet you can’t wait…huh? 😉

{18 Gauge Needle–ugh!}

I have been taking a medication called Tamoxifen for 2 1/2 years.  My breast cancer had estrogen receptors, and the growth of these tumors can be stimulated by estrogen.  Tamoxifen is like a key that fits into the keyhole (receptor) of tumor cells so estrogen cannot get in there and cause growth.  Even though it blocks estrogen, it also stimulates estrogen production, so much so that it is used for infertility.

I have not been doing well on this drug.  It was never a walk in the park from the beginning, but I got over the typical joint aches and moodiness that came with it.  But lately, my side effects from this med have been pretty rough.  Hot flashes so intense I want to crawl out of my own skin, joint aches, ovarian cysts, uterine lining growth (first stages of uterine cancer–a big concern) and the worst one for me–fatigue.  I have always had to take naps on this drug, but the last few months the fatigue was ridiculous.  I would need 2-3 hour naps most days and it was a very deep, drug induced sleep, and I would wake up feeling old and creaky and just plain yuck.

For my recent surgery, I had to go off the Tamoxifen, and OH MY DEAR FRIENDS I cannot tell you how much better I felt.  For those of you who have been reading along my cancer journey the last few weeks, you know I had to have surgery twice in a week, and had a lung infection called pleurisy.

Guess what?  I was LESS TIRED having two surgeries and pleurisy than I was on Tamoxifen.  It has been so great to feel energy even through healing from surgery.  It really put into perspective just how much Tamoxifen had been effecting my life.

My OB has been hinting around about taking me off the drug as he is very concerned about the uterine lining growth.  I have had to get ultrasounds to check lining and cysts every 3 months, but recently he has been checking me monthly, and it has not looked good.  I have an appointment with him soon and I know he will be relieved that I am off Tamoxifen, and I am sure he would have suggested it anyway.

I met with my Oncologist today, told her I feel better after 2 surgeries and a lung infection than I do on Tamoxifen, told her about my uterine problems, and she agreed I need to come off the drug.  She said I gave it my best, and was pleased I almost made it to the 3 year mark.  A study just came out that increased the time for women to take this drug from 5 years to 10 years, which made me cry when I read it.  I thought MAYBE I could make it to 5 years, but NO WAY ten years.  The statistics of being protective against recurrence is impressive, so it was hard to finally give up, but I know it is for the best.

So what now?

There are only 2 other options for me.

Because I am premenapausal, they have to make me postmenopausal.  The goal now since I am stopping the drug that blocks estrogen is to eliminate estrogen.  There are 2 ways to do this:

1. Monthly shots that shut down the ovaries–instant menopause  OR

2. Full hysterectomy–this includes the ovaries.  This is not your typical hysterectomy, most hysterectomies done these days leave the ovaries, which in turn leaves hormones.  Breast cancer survivors don’t get that luxury.

With both options, they start you on an aromatase inhibitor.  This takes care of any estrogen that is found in your muscles, fat, liver and in breast tumors.

I chose the shots, as I am young and I like that it is not permanent.  Taking all hormones out of the body and going for full hysterectomy has its own set of problems.  It increases chance of heart disease, which is the #1 killer of woman, and my chances for that are already sky high due to my chemo and radiation.

I got my first shot today.  I will start on Arimidex in 2 weeks.

How do I feel about all this?

A nervous peacefulness, a little sad, and nauseous.

I am nervous because the nurses read all the side effects of Goserelin shots and Arimidex and they sure sound very much like the side effects I already experienced on Tamoxifen, minus the cysts and uterine lining growth.  Oh how I pray I am one of the lucky ones who do not have too severe of side effects.

I am at peace because today God just keeps reassuring me of His faithfulness.  Not only that, it looked like insurance was going to be stubborn in covering the shots, but at last minute said yes.  My particular insurance usually takes forever making these decisions, so to have the billing manager come and tell me I was approved and could get the shot TODAY was surprising and reassuring.

I am sad because…hmm…how to put into words.  My poor ovaries are gonna shrivel up!  I don’t know….I’m used to seeing them every month on ultrasound and they helped create 3 beautiful girls and maybe it is because to me they mean youth?  I was always so proud of my body for continuing to cycle despite chemo, radiation, & Tamoxifen. My doctors marveled at that. I guess I got it in my head that a young, strong body is a body that cycles regularly so for me it became about youth and strength.  Time to let go of that belief.  Adios ovaries…maybe someday after these shots you will work again.

I am nauseous because I had my first shot today, and it was the FIRST TIME EVER that I have gotten queasy and faint from a procedure, and you all know I’ve had my share of procedures!   These shots are given in the stomach, and they place a pellet under the skin.  The nurse told me she would numb the area first, which in itself was surprisingly painful–it burned a lot.

I then asked her if I would be able to see the pellet under my skin and she said “oh yes, it will be right here under the skin, it is good size.” Then she held up the needle that contained the pellet, and that is when my heart started beating faster.  My glance was brief, but my first thought was “that is the size of a coffee stirrer!”  She said “I sure hope this goes where it is supposed to, you are so skinny” as she pushed it in…and that did me in.  I felt it, it seemed like she could have waited a bit longer for the numbing meds to take.  She sat me up, and that is when my head felt weird and she told me I looked green and to lay back down.  That was an hour ago and I’m still queasy.  I’m sure it is not the med side effects yet…I just think the idea of a pellet and that big needle under my skin got…well.. under my skin!