Treatment Update

Wow, it's been almost a month since my last post.  That was not my intention when I started this blog - I planned to try to publish at least once a week!

I think now is a good time for a treatment update.

I'm 1.5 weeks past my 4th A/C chemo treatment.  This is the 4th and final treatment of the drugs considered the "hard" chemo.

All in all, I'm doing OK, but chemo has definitely had an effect.  I buzzed my head right before my second chemo treatment.  About a week after my third treatment I noticed the small hairs starting to fall out - and that caused my head to ITCH!  To alleviate this, I decided to shave my head to the skin.  Since no one in my family felt me taking a razor to my own head was a good idea (I can't imagine what they were worried about!) my wonderful husband stepped up and used an electric razor to shave my head.

And now, my hair has continued to grow just enough to be annoying and make my head feel like sandpaper!  Not exactly what I was expecting.  Oh, and I still have to shave my legs - bummer.  I do have a great collection of head scarves and hats to wear!

My energy has definitely taken a nosedive with this last round of chemo.  I get tired very easily and working outside in the summer heat isn't even an option at this point.  My energy is slowly starting to increase, but it is still very easy for me to overdo it.  I wake up in the morning, ,feel great, have a long list of things to do that day, do 1 or maybe 2 of those things, and wham - I'm exhausted for a couple of hours.  *Sigh*  Back to the couch it is.

The hardest part of these last four treatments for me was actually the side effect of the neulasta.  Neulasta is a medication that is administered 24 hours after chemo.  The medication jump starts the bone marrow to produce blood cells.  This helps prevent my white and red blood cells from bottoming out, leaving me at an even higher risk for infection and illness.  The side effect of neulasta is described as "bone pain."  This manifests itself differently for each person.  Some have told me that they felt it in their arms and legs, others in their pelvis.  Basically, it causes the bones it affects to feel cracked or broken.  For me - this manifested itself in my ribcage and sternum.  Basically, I wake up feeling as though my sternum and all my ribs are broken.  Every. Breath. Hurts.

Luckily, this was my last treatment of this drug.  Next week I start the drug Taxol.  This treatment will be every week for 12 weeks.  Yes, every - single - week.  That thought doesn't excite me, but I have been assured by my oncologist and numerous chemo survivors that this treatment is easier on the body.  Less fatigue, less nausea, less of an effect on the blood cell counts.  I am holding on to hope that this will all be true for me and in the next few weeks I will feel a little better each week.

The good news is the treatment is working and my oncologist can tell that my tumor has already shrunk, and that was when he did the exam after 2 treatments.  I believe it has shrunk even more after the final two treatments.  This makes all the side effects of chemo worth it!

I will do my best to keep this blog updated with how I am doing as I progress into this next step of my treatment.

Positivity Continued

This is a continuation of the last post. I mentioned that it wasn't just the positive sayings that help me stay positive.  I have found some great Bible verses that lift me up as well.  God is always with us, He will always give us strength.

Isaiah 41:10 (NIV)

So do not fear fear, for I am with you, do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with My righteous right hand.

Psalm 62: 5-7

Find rest, O my soul, in God alone; my hope comes from Him.  Truly he is my rock and my salvation; he is my fortress; I will not be shaken.  My salvation and my honor depend on God; he is my mighty rock, my refuge.

Psalm 52:22

Cast your cares on the Lord and he will sustain you, he will never let the righteous be shaken.

Psalm 33:20-22

Our soul waits for the Lord; he is our help and our shield.  For our heart is glad in Him, because we trust in His holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in you.

Romans 8:28

And we know that in all things God works for the good of those who love HIm, who have been called according to His purpose.

Psalm 31:24

Be strong and take heart, all you who hope in the LORD.

Deuteronomy 31:6

Be strong and courageous.  Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.

 

Positivity

Okay,  I have now been told several times in this last week that "I look good for being through my first two rounds of chemo."  I have a confession - I think part of it is learning some new make-up techniques at a class titled "Look Good, Feel Better" for chemo therapy patients.

However, I think the other factor is keeping a positive attitude.  There is absolutely no doubt, cancer is scary.  Cancer is hard.  However, I have taken the attitude from the very beginning that I can go through this happy, or sad, but I'm going through it either way, and happy makes it easier.

I have had some wonderful help along the way though as well.  I am going to share some of those things that have helped me here.  You don't have to be going through cancer to benefit from these little inspirational thoughts and sayings.

The first is a poem on a card that my coworkers gave to me the day I was headed into my biopsy.  It's a poem that can be commonly found on the internet called "The Oak Tree" by Johnny Ray Ryder Jr.

The Oak Tree

A mighty wind blew night and day.

It stole the Oak Tree's leaves away.

Then snapped its boughs

and pulled its bark

until the Oak was tired and stark.

But still the Oak Tree held its ground

while other trees fell all around.

The weary wind gave up and spoke,

"How can you still be standing Oak?"

The Oak Tree said, I know that you 

can break each branch of mine in two,

carry every leaf away,

shake my limbs and make me sway.

But I have roots stretched in the earth

growing stronger since my birth.

You'll never touch them, for you see

they are the deepest part of me.

Until today, I wasn't sure

of just how much I could endure.

But now I've found with thanks to you, 

I'm stronger than I ever knew.

A wonderful organization called "Can Do Cancer" (which I highly recommend) provided me with two cards that also gave me inspiration.  Here is the sayings from one of those cards - it is attributed to "Gretchen, 2016."

Whenever you find yourself doubting how far you can go.

Just remember how far you have come.

Remember the Trials you have faced

All the battles you have won

And all the FEARS you have OVERCOME!

I'll share some more tidbits of inspiration in the coming days in some other blog posts.  Just remember, now matter what you are going through, having a positive attitude helps!  God is Good, ALL THE TIME.  He is here with you no matter what you are going through.

Be Blessed.

Silver Linings

Silver linings exist in all situations that we go through.  I'll admit, I would prefer to not be going through this battle against cancer, however, if I am going to go through it, I might as well find some positive aspects, Right?

I somewhat joked with family and friends when I was first diagnosed that I was OK with getting a "boob job" (paid for by insurance) and a new hairstyle in the form of a wig through this process.  I wasn't totally joking, those are some things I immediately saw as advantages to this whole journey.

In all honesty, I have found some pretty awesome silver linings.

1. From even before I got an official diagnosis, I received a level of support from my co-workers that was incredible, and endearing.  From management down, they have been supportive of me.  They have come to me with cards, hugs, jokes, smiles, offers to shave their heads in solidarity (ok, only 1 person mentioned this), anything that they felt would lift my spirits.  In my former career, I watched a co-worker go through this battle.  She received support, no doubt, but I don't think it compared to this. 

2.  The courage to try new things - like a short hair cut!  I have had my hair a minimum of shoulder length for nearly 30 years.  Ever since my mom cut it to chin length when I was 8 and I thought my life was over.  I had never considered cutting it truly short.  But with chemo approaching, knowing I would be losing my hair anyway, I cut it short.  AND LOVED IT!  This is not an "oh it will work for now" feeling. I truly love the short hair.  Will I ever grow it back out again?  Probably.  Will I wear it short again, (by choice)?  ABSOLUTELY!

3.  Along with the new hairstyle comes the courage to try new head accessories.  Since the diagnosis, I have found some adorable hats and beautiful scarves.  I am not typically a hat wearer, so I don't even look at them in the stores typically.  Yes, I have the typical baseball hats, but I also have several other cute styles.  I already have a few gorgeous head scarves and will likely buy more.  And finally, thanks to the wonderful organization "Strands of Strength" and Studio 409 in West Des Moines, I have a wig that I am truly excited to wear.  It is in my favorite hair color (Dark Red) and has long thick loose curls - a style that my hair has never been able to do naturally (it holds no curl at all)!

4.  I saw the true value of Facebook.  Yes, Facebook - the sometimes thought of "evil" social media site that people love to hate.  The same social media site that my former employer used to exaggerate a post I wrote that was hacked and made public without my knowledge to then fire me.  The same social media site that I received death threats against myself and my precious kiddos on after my former employer chose to release my confidential personnel records to the press after firing me.  Yep, that Facebook.  I wrote a heartfelt post to inform distant family members and friends who didn't already know about my diagnosis.  I received a huge outpouring of support.  People who were friends of friends contacted me to wish me well, and added me to their prayer lists. Some of these people were survivors themselves and gave heartfelt advice.   As people read my post about being diagnosed with breast cancer, they poured out their love and support.  Yes, Facebook may have its issues, but this journey has shown me the positive power of Facebook as well.

Back to the prayer for a second,  If you haven't figured out by any of my other posts on this website, I am a HUGE believer in prayer.   This was one of my reasons for being so open about the diagnosis so early on.  While not everyone who knows me on Facebook is a believer in prayer, many are.  I truly believe that you cannot have too many people praying for you!  I credit this prayer with the sense of peace that has enveloped me through this whole process.

5.  There are some advantages to hair loss from chemo (besides #2 & 3 above).  No waxing, no shaving my legs for about 5 months - through the summer!  Ok, men, you may not see the point of this - but women out there, you know that is a dream come true - especially over the summer!

6.  My chemo treatments give me a scheduled roughly 2 hours every 2 weeks (or eventually every week) where I am sitting in a chair.  I call this - guaranteed time to write!  Whether it will be working on this blog, some other blogs I have planned, or the book I am currently working on - I plan on using this time to write.  Of course, I have already accepted that I am pretty sure my family is going to make sure that I never attend a chemo treatment alone (even though I can drive myself to and from them).  But, they may be just watching me write some of those times.  :)

7.  Yet another life experience to write about - hence this blog.  Enough said.

8.  A renewed interest in getting back into research in human genetics.  Many know that I have struggled to find a new career after a former employer destroyed my reputation with lies in the press.  Learning about possible genetic reasons I have been afflicted with this disease at such a young age, makes me want to go back into studying human genetics.   It doesn't have to be breast cancer genetics, just genetics in general.  My peace with walking away from my former career and starting something new has increased tremendously during this process.  After nearly two years of significant emotional turmoil, this renewed sense of peace is definitely welcomed.

9.  This may be the last on the list, but it is certainly not the least.  A chance to live out my faith in God.  I have already had people comment on my positive attitude and faith during this process.  Doctors have been baffled by my sense of calm and peace, as well as my humor so soon in my diagnosis.  I have no other way to explain it other than my very strong belief that God is with me through all of this, He has a plan, and He has this under control.  It WILL be alright, because God's Got This.  For non-believers, this may seem cliche, and truthfully, I can't explain exactly why I have the sense of peace and Faith that I do, it is just there.   And boy, I wouldn't want to face this journey without it.

Finding these little silver linings has turned what could (and rightfully should) be the most terrifying time of my life into an adventure that has brought me smiles, laughs, and shown me a strength within myself I didn't even know was there.  

I hope that these are only the first silver linings in this journey, and I believe there will be many more to come.  In addition, I hope this ability to find silver linings in the midst of tough and scary circumstances will continue throughout the rest of my life, long after this journey is just a blip in the rear-view mirror of life.

Update after Chemo- Round 1

The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.

- H.P. Lovecraft

As humans, we are ingrained to fear the unknown.  That was definitely true for my first round of chemo.  I went into it believing that I would get through this, knowing that God was by my side, and Praying it would all go as well as I hoped.  But nevertheless, I was scared.  I've never been through chemo, and while doctors and books and resources and survivors had told me what to expect, everyone's BODY responds to chemo uniquely and I had no idea how mine would respond.

Since I am writing this, clearly, I survived my first round of chemo.  :)  I meant to get this update written a little sooner, but I seemed to run out of time each night before falling asleep!

The day of chemo (last Monday) went smoothly.  There were a few delays in getting all the orders signed and ready for my medications, and since my infusion port had just been placed during surgery on the previous Friday, and was still swollen, healing, and tender, it took the nurses an extra try or two to get access to it.

The first half of chemo treatment, is not the chemo medications, it is the all the premeds they give you first.  

  • Cinvanti - an anti-nausea med goes into the IV first. 
  • Dexamethasone - a steroid to help boost my immune system goes into the IV second.
  • Sustol is given through an injection in my abdomen while the dexamethasone is flowing.

Finally, after about an hour, it's time for the chemo meds.

  • Adriamycin - is injected from two syringes over the course of 10 minutes
  • Cytoxan - is injected through the IV for 30-45 minutes.

Then the nurse places the Neulasta on my arm and I'm free to go.

A couple of common questions I've received:

Did the chemo hurt, or how did I feel as it was administered? Honestly, nothing.  It didn't hurt and I really didn't notice any feelings while it was injected.

So how did I feel in the days after the chemo?

On Monday afternoon, I felt a little tired, a little off, not really nauseated at all. I had a little bit of a headache, but still worked for the rest of the day.

On Tuesday - I felt a little "off" at times.  My normal go to foods didn't always sound as good.  I took the prescribed anti-nausea meds (even though I wouldn't really describe what I felt as nausea) and they seemed to help with the "off" feeling.  Tuesday afternoon, my Neulasta device on my arm beeped and started it's 30-45 minute injection.  Most of the time I felt nothing, occasionally, I felt a slight burning (like you would during any IV injection) - but nothing horrible.  Once the device beeped again to signal it was done, I started to remove it.  This was a bit of a process - the adhesive on that sucker is STRONG!  I felt like I was going to rip off layers of skin trying to pull that thing off.  But alas, I did get it off. Tuesday evening, I had a bit of a boost of energy (which I had been told to expect because of the Neulasta).

Wednesday - I woke up and felt pretty darn tired.  I felt a little "off" again, and continued to take the anti-nausea meds which helped with that feeling.  I made it through the day at work, but admittedly, I was pretty tired at the end of it all.

Thursday - For me, this was probably the day I was most tired.  I worked all day, and didn't take the advice to sit down while working (I normally stand) until the afternoon.  I got home that night, and slept for about 2 hours.  Also, on this day, I didn't really feel "off" but none of the food I had for breakfast or lunch sounded good.  So I broke away from the keto diet that I have been on for a few months, and went to Dairy Queen for a blizzard and cheese curds for lunch!

Friday - I learned my lesson from Thursday.  I made sure to sit as much as I possibly could during the day on Friday.  It helped, I had more energy left at the end of the day and felt a lot better.

Saturday - By Saturday morning, I felt pretty much back to normal.  Heat and physical exercise would still exhaust me faster than normal (although, since it was 100 degrees on Saturday - it admittedly could have been the crazy Iowa weather!).  I was able to enjoy my boys and my regular activities.

Sunday - Pretty much back to being a normal day for me.  

Now, I have a week off this week, and then I start it all again for Round 2 next week.  But, this time, it is not completely unknown.  The fear is a little less, and I know that God is still walking this journey with me. 

Now, I just have to wait for my hair to start falling out (actually, I have an appt to have it shaved next Saturday anyway).  I have several cute hats, a few gorgeous head scarves, and a beautiful wig.  I'm as ready as I can be.  And besides, it is just hair - it grows back!

Stay tuned for the journey!

 

 

Breast Cancer Prayer

This prayer was given to me by a member of my church congregation.  It is beautiful, and inspiring.

MY PRAYER DURING BREAST CANCER

By Judy C. Kneece, RN, OCN

 

Lord, I have just received the diagnosis of breast cancer.

Still my anxious heart as I seek to understand why.

Teach me to transform this suffering into growth,

My great fear of tomorrow into faith in your presence,

My tears into understanding,

My discouragement into courage,

My anger into forgiveness,

My bitterness into acceptance,

My experience with cancer into my testimony,

My crisis into a platform on which I can learn to help others.

God grant that one day I can embrace this time as my friend,

and not as my enemy.

The Treatment Plan

So in the past week, I have met with a team of doctors at the University of Nebraska Med Center (Monday), heard their treatment plan.  Then, I met with an oncologist here in Des Moines on Tuesday morning.

The doctors in Nebraska and the ones here have pretty much the exact same ideas for treatment of this cancer.  It makes decisions easier when all the doctors agree.

My treatment plan will consist of having a port put in (today actually), then starting chemotherapy on Monday (Yes, in 3 days, less than a week after I met the oncologist)!  I will have chemo every other week for 2 months, then weekly for another 2 - 3 months.  Sounds like a blast, huh.

Once the chemo is done, I will have a mastectomy (I'm leaning toward bilateral, but there is time to think about that more in the coming months).  Depending on how the cancer responds to chemo, and what my scans look like then, we will decide if I need to have radiation before undergoing reconstruction.

Long story short, it's going to be a bit of a long year!  I'm trying to stay positive throughout this and trust that God will give me the strength to get through this.  Of course, being positive does not take away the fear.  The unknown is scary.  Not knowing how I will react to the chemo is scary.  Not knowing how I (and my kids) will react to not having hair, is scary.  The thought of major surgery, followed by another major surgery for reconstruction and all the infection risks that come with it, is scary.  The possibility that even with all these great efforts, this cancer could possibly come back, and possibly in a more vital organ (liver, lung, bone, brain) is VERY SCARY.  Through all this, I rely on my faith and belief that God has a plan and my hope that he is certainly not done with me yet.

Stay tuned for more information and stories from my journey.  I am going to be posting an amazing prayer that was given to me by a congregation member of my church.  I have some other little tidbits planned as well, and that's just from these first few weeks of this crazy long journey!

The Details

The Diagnosis:

Invasive Ductal Carcinoma with In Situ Component

The tumor is ER (+) PR (+) and Her2 (weak +) (but this could change to negative with confirmatory testing.  

We don't know the actual stage at this point because more advanced imaging needs to be done to determine the exact size of the tumor.  It does not appear at this point to have affected the lymph nodes (this is a good thing).

The invasive portion is Grade 2, the In Situ portion is Grade 1.

HUH?

So what  does all this mean?  For the non breast cancer survivors (who probably already know what all these acronyms mean even better than I do, I will explain what this means in layman's terms.

Let's start at the top:  "Invasive" means the tumor has invaded breast tissue outside of the mammary duct.  "In Situ" means the tumor is confined within the mammary duct itself.  My understanding of having both terms in my diagnosis is that while my tumor has invaded the surrounding the breast tissue around the duct, there is a high concentration of cells (denser area on the mammogram) that is still contained within the duct.

ER , PR, and Her2 are molecular receptors on the tumor cells themselves.  ER and PR refer to estrogen and progesterone respectively.  This means that estrogen and progesterone can "fuel' the tumor cells - causing them to divide.  Her2 is another receptor.  While Her2 (+) cancers are slightly more aggressive, they can be specifically targeted with drugs designed to attack the cells with this particular receptor (which is only the tumor cells).  This form of therapy is very effective, making the prognosis for tumors of this type very good.  If the tumor is Her2 negative, you can't use the special targeted therapies specific to Her2, but the tumors tend to be less aggressive - another good prognosis.

As I mentioned above, I don't have the "Stage" of tumor because they need to know the size to make this determination.  We know that the tumor is at least 2 cm and could be as large as 6 cm.  The reason for not being able to determine the exact size is that there are areas on the imaging that appear to be calcification and these cover an elongated spider web like area.  While some of these could be cancerous, some may be secondary to the cancer m ay or may not be cancerous so they cannot determine the exact size without more imaging.  I will be having a breast MRI later this month that will hopefully shed more light on the stage of tumor.

The final statement about the "Grade" refers to how advanced the tumor cells are.  Basically how different are they from normal cells.  The grade is assessed on a scale of 1 to 3.  The higher the number, the more advanced the cells are.  So the cells that have already invaded the tissue outside the duct are a little more different than a normal cell, but the cells still in the duct are similar to normal cells.

This is about the extent of what I know about the tumor at this point in time.

 

 

Cancer?

This is a sentence I never expected to say.  I am 38 years old and I was just diagnosed with breast cancer.  I have no family history of the disease.  I was on the lookout for so many other conditions that do run in my family, but not this one.  

This blog is going to be devoted to my cancer journey.  This is where I will share results, triumps, struggles, fears and every other emotion I run into in the process of beating cancer.  And I WILL beat this.  Not by myself, but with the help of many wonderful doctors, amazing family and friends, and a GOD who is bigger than everything, even cancer.

Stay tuned, and hang on for the ride!