Radiation & Chemo

Friday June 29

8:00 am - My recliner chair awaits. Today, I had Nurse Karen.  I mentioned that I didn't remember seeing her before and she said she remembered me and that she has been doing this for 24 years.  (wow, memory really is shot).  She took my vitals (BP 143/92).  Once the Herceptin drip was set up, I leaned back with my blanket that Jane made and another one that was heated .... ahhhhhh. Karen gave me a glass of orange juice and pillows. 

I'm spoiled

I hit twilight for the hour.  It was nice to just relax.  I feel as if I'm on the go all the time. Work, treatments, this-n-that.

Made it to work around 9:30.  Two of my co-worker's birthdays and a pot luck today.  Friday!!

4:00 pm - Left for radiation treatment.  I had a few messages on my phone. First one said to not report to radation today unless I hear back from them.  Second one, come on in.  Once I got there, the tech showed me the piece on the equipment that had broke.  So that was the problem..... hmmm, glad it was fixed. 

Round 20 = 4 weeks

Some how, the days seem to be flying by.  In other ways, it seems like I have been doing this for way too long.  Time is a funny thing.

My eyebrows are just about totally back.  They were the last hairs that I lost and the first hairs to grow back.  My head is full of soft fuzz.  My finger nails are growing, but 3 of them broke clear down (ouch).  Still not totally healthy looking, but they are getting there. 

I'm so grateful for the care that I'm receiving.  There are so many that are involved in my treatment and in saving my life.  None of this can be taken for granted.  Even though Herceptin still has unanswered questions, I'm glad that it is available.

Saturday June 30

Christie, mom & I went to Bob Evans for breakfast.  It was tough trying to get my butt out of bed, but I'm thankful to get to visit with them and have a wonderful meal.  Afterwards, I took a nap .... 3 hours!  Oh boy, hope I sleep tonight :)

Peace be with you ~

In the clouds - Blue Ridge Mountains



The Brain

I usually see Dr R on Wednesday's, so I was surprised when the tech said to wait for the nurse to take me back to see the doc.  It is good to touch base, especially since I'm pioneering the prone position and can give him feedback from a patient's point of view.  Today, we talked about the MRI and the headaches.

He did state that there was no cancer in the brain and, naturally, we are relieved.  I asked him if I've ever had TIAs .... none showed .... no strokes either.  My memory has been shot, my concentration just about nil, and trying to remember how to spell words can be frustrating.  Doc said that my grey matter looked like an older person's.  Wha???? He said that the veins were thick, like a smoker or someone with high cholesterol.  Well, I quit smoking about 11 years ago and I don't have high cholesterol.  Then he mentioned a condition that had three words, and I'm sorry that I didn't write them down.  First word was "cardiovascular". 

I will definately find out before too long

Doc thinks my headaches could be migrane related.  I use to have intense migranes a long time ago.  (a few head injuries in childhood)  Or, perhaps it is my blood pressure meds that need adjusted.

He said that he is sending the report to my primary care doctor and will let him decide the next step.... maybe a neurologist.

Well, I'm not sweating it.  Remaining calm.

No cancer on the brain is the silver lining

Doc also mentioned that not too long ago, people with my type of cancer didn't have much chance.  But now with the "smart chemo" = Herceptin, we have a much better chance than ever.  That perked me up, yet gave me pause ....

Funny when those reality checks come in 

Tomorrow morning, chemo.  Thank you brillant people who developed Herceptin and Thank you to patients who endured trials upon trials.

Springfield Lake

MRI Results

I arrived for my daily "glow" appointment and a nurse met me as the tech was taking me to the treatment room.  She said that Dr R was not in today, so he wanted her to give me a message.  He looked at the MRI results and "did not find any disease in my brain".  They aren't sure what is causing my headaches, but this is a BIG RELIEF.  I didn't realize how much I was stuffing my emotions until she gave me the news.

I gave her a hug and happy tears flowed

The techs were throwing out some possibilities .... perhaps my blood pressure meds need adjusting, or perhaps my glasses need adjusted.  Sound familiar?  Same things that I was thinking about.  My sister gave me her blood pressure device so I can get some daily readings.  Then, I'll make an appointment with my family doctor. 

I asked the techs if radiation could be giving me the headaches and they said only if I was being treated on my head (which I'm not).

I don't want to live in constant fear of the "what if's". 

One day at a time. Right?

Friday morning will be another Herceptin drip.  If I see Doc Esther, I'll touch base with what has been going on.  Not scheduled to see her until August.

Enough about that ....

Praying for those surround by wild fires.  Keeping a close watch on Casey as the danger seems to be everywhere. Also for those affected by the hurricane.  Crazy, mixed up world.

My brain has been completely foggy.  I can't seem to write very well (maybe I never really have!)  Concentration is horrible too. 

Hopefully my blog isn't boring everyone to tears!  Quite honestly, writing this all down is good therapy for me and since I can't remember a lick of anything, it is a great way to keep track of events, symptoms, appointments, etc. 

Know what I mean jelly bean?

Say "Cheese"

Monday ~ picture day.  Keeping visual track of my breast by the routine photo shoot before radiation treatment.  In the middle the shoot, I knew that my arm and neck were in a bad position.  I just had to hang on a little longer and get through the radiation. Oh my gosh, laying prone sucks. 

Still waiting on the MRI results.

Yep, my head hurts.

The Beginning of a New Week

Saturday, the MRI went okay.  The nurse was as gentle as she could be with my veins.  She found one in my right hand (which seems to be the only one folks can find).  With the smallest needle, the vein rolled the first try and then she got it on the second try.  So very glad I was laying down. 

Very glad for the ear plugs as well.  The machine hit pitches like a jack hammer.  At one point, I was counting the patterns 1 2 3 4 5 .... 1 2 3 4 5 6 ..... 1 2 3 4 5 .... etc.  At times, it reminded me of "Close Encounters of the Third Kind" (just needed the noise to be music). 

Now for the waiting .... patiently waiting

Afterwards, I met up with Teri at our "half-way" point.  Panera, shopping, Applebee's, more shopping.  Got home and stayed up the latest in a long time (11:30).

Sunday ~ The Beginning of a New Week

We visited a church this morning.  It is very close to home and we liked the message and the preaching.  It was a different church than last Sunday .... just looking for our "home" church.  This one might be it.  Matt felt very comfortable there.

Christie visited this afternoon and brought over four more scarves that she made from the material I picked out.  They are SO beautiful!  Thank you Christie!

My hairs are growing back!  Little peach fuzz!!! HAHAHAHAHA

Enjoy this perfect day!



Round 15

Friday - Completed #15 = 3 weeks

Radiation treatment seems to be going quickly.  The cream is helping to keep the redness under control (although it is staining my bra).  Tonight we went out to dinner and did some shopping at wally-world (aka Walmart) and I experienced a deep stabbing pain in my treated breast.  Haven't felt that before and I'm not sure if it is "normal".

Life is full of "new norms"

Traffic was really backed up and I made it there 10 minutes before closing.  Crazy construction.

The MRI is scheduled for Saturday at 10am.  They are going to use the contrast ... last time, it was accessed in my hand and it felt like the dye was exploding my veins.  Not looking forward to this.

After everything else, what's one more needle?

Have a blessed weekend.

Remission

Today is Wednesday ~ I see the radiation doctor every Wednesday.

I mentioned that I have been getting headaches daily for a couple of weeks and told him about the incident that happened Saturday.  I thought it could be my blood pressure.  I've been on my B.P. medication for at least 3 years now.  If anything, I can at least contact my family doctor and get checked out, or at least buy a pressure cup for home and monitor it.  He wants to do an MRI instead.

Just to make sure

I haven't considered that before (and I'm not even going to speak it out loud).

My blood pressure (taken from ankle vs arm):

Jun 20    159/95

Jun 8      146/85

May 22   138/74

May 7     128/78

Apr 27    140/69

So I mentioned, what about my vision changing and the need for new glasses? 

He said that could be it as well .... or possibly stress.  Let's do the MRI

Just to make sure

Okay, let's talk about that then. 

Once the radiation is done,

how do you know all the cancer is gone? 

He said that "we don't".  There is no blood test that will confirm it is gone. Just monitoring me on a regular basis and running various "scans" (mammogram, ultrasound, c-scan, mri).  It is all based on statistics and patients before me as oncology is researched year after year. 

My nodes were tested and clear of cancer.  They also got "clear margins" when the lump of cancer was removed.  That is all good news.  He said I was actually in remission after surgery.  Hmmmm, I didn't realize that.

I haven't asked that question before.  Now, the question is foremost in my mind ~

Just to make sure

That word caught my attention .... remission.  He said that patients have told him what it was like after going into remission and how it felt like a dagger was hanging just over their head waiting for it to fall.  And after year one, year two, etc the feeling slowly lessened as remission continued. 

That is something cancer patients are always going to have. Fear of it coming back.  I know a lady who has had it FIVE times.  How do you cope with that?

Constant fear cannot control your life

These headaches? I probably need new glasses or it could be stress .....or it could be side effect from the Herceptin.  I could be part of the very few who might have side effects such as:



Well, I will wait on the MRI .... Just to make sure



By the way

The middle of last week, my eyebrows started growing back.  I had to get real close to the mirror to make sure I was really seeing them.  It seemed to happen when I was sleeping.  At first, I thought it was smudge and wondered how I got that in my sleep. 

Now I can express myself.

Getting some dark peach fuzz on my head as well.  Each day, just a little bit more.  Kinda habit forming to rub my hand over my scalp, lol.

I've been getting some massive headaches over the past two weeks or so.  Friday night, Matt almost took me into ER.  I could hear the blood flowing in my ears and my heart pounding in my head.  My lips were numb.  I think my blood pressure was in overdrive.  That's the first time I felt that.  I laid down with a cold washrag on my head.  Still getting headaches, but not to the intensity of this episode.

The heat of the summer has set in .... loved the rain we had, but it created high humidity. 

Yesterday, they took a series of photos before radiation.  Because of that, I had to lay in the prone position longer and that was hard.  It's like having your forehead pressed against a 2x4 board.  But, I can't complain too loudly.  This is just part of the deal I agreed to in order to save my life for a few more years.  At least that's the plan.

I'm looking forward to my strength coming back so I can dig into some projects. So much to do! 

Be a blessing to someone today ~ It feels so good!

Ignite

The word "ignite" has been mentioned 3 separate times today. 

Once, when my husband was speaking of a church he went to last week that ignited the passion he once had .... the excitement of worship that drew him out of the wall of shyness.  That is saying a lot.

Once again when I got a text from my daughter who is developing a concept for her community and thought of "Ignite the Flame. Follow the passion that burns inside of you...."

The 3rd time was when she called me from her drive to Colorado Springs to tell me she just entered a wall of smoke.  We are hearing about all the wildfires out west and now a new one about 1/2 hour from her home and about 1/2 hour from Colorado Springs.  For this, we pray for all those who may loose their homes, schools and more as the flames draw near.  We pray for those who are fighting the fires and putting their lives in danger.  We pray for God's creatures and His beauty that are in peril.

I don't know the answers as to "why".  All I know is that we can pray and ask for God's protection.  This country needs it so very much.

Ignite.

ignite [ɪgˈnaɪt]
vb
1. to catch fire or set fire to; burn or cause to burn
2. (Chemistry) (tr) Chem to heat strongly
3. (tr) to stimulate or provoke the case has ignited a nationwide debate
[from Latin ignīre to set alight, from ignis fire]


It is amazing how this word can have different meanings.  Right? It just dependents on your circumstances. 

Take this crazy canzer thingy

After you get over the shock of hearing that word, you then have to deal with it.  After you begin the process of learning about it, going through treatments, all kinds of things begin to happen.

Everyone has a different experience, so I am only speaking for myself.

I began looking at my priorities, my bucket list, myself.  Then I began the awareness, roused, stimulated, awake ~~~ ignited.  I didn't want to just walk through life.  I want to DO something that matters! And then,

A deep calm

So very peaceful

Such grace

No fear

Complete joy

Tranquility

Round 10

Two weeks down!!!

Ahhhh, Friday.  End of the week and I'm sleeping in tomorrow! Everything is fine and dandy. 

The tech gave me a picture of me on the table with the mesh on my back and he also gave me the link to a model doing the same thing.

Trust me, you can't move when it's locked down tight

You are looking at the MODEL!





Round 8

Route 8 backed up (again), ugh ~

I asked how many sessions I had left and the tech checked the computer screen.  I looked at the figures and quickly added in my head *tongue-in-cheek* (I feel brain dead)

25 standard
  7 boost

Now, that's 32 and I thought it was 33! 

I told him he just made my day!!!!

Well, he said, it depends on if the doctor wants to change some of the radiation "type" .... it might add to or subtract to the total count.

~ Sigh ~



Wednesdays, I meet with the doctor.  Dr. R was not in today, so I saw the lady doctor from the "photo" session.  I opened my ball gown, she took a quick peek and didn't even touch me.  All done.

The nurse said that samples of cream (XClair) were still not in and they don't know when they will get some.  So, I asked for a script and I would be charged $50 through insurance for 1 tube.  Nurse said that I could get 2 tubes for $65 through a mail order vendor they use and it would be delivered to my home the NEXT DAY.

Love it ~

Today's Thought

⁷ But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us.

⁸ We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair;

⁹ persecuted, but not forsaken; struck down, but not destroyed—

2 Corinthians 4:7-9

AMEN

I usually put all my devotions on my tab "Inspiration".  Today, it is right out front.

The White Farm

Round 7

This morning, I broke another blood vessel.  This one is on my foot from the base of my little toe, wrapped around the side to the back on the "padded" part of the foot.  Ouch.  I just stepped on the plastic matt under the office chair.  My body seems so fragile.

The day went by slowly. 

I made it to radiation and was taken right in.  It is getting faster to line everything up and blast me.  I asked them when the fatigue is suppose to hit and they said about two weeks into treatment. 

But I'm tired now!

They just smiled and said it's because this is like a part time job (having to report in every day) plus working my full time job, effects of chemo, yada-yada-yada.

Then they said, just wait for the phase "I don't want to do this anymore!"

I said, I'm already there!

~ 26 remaining ~



Dad's dock & boat

Round 6

Monday ~ the beginning of a new week. 

Not too much wit and humor today, just don't feel like it.  My sister and her husband just received a call that his life long friend just died.  So sudden .... they just saw him yesterday.  It is times like these that make you pause and wonder.  Life can change in a second.  My prayers go out to Bonnie and her family.  May Don find peace in the beauty of Heaven.

Staying focused, staying positive, just tired.

~ 27 remaining ~

Praying for you too, Judy, as you continue on your journey.

Saturday

I worked 5-1/2 hours today to make up all the time missed for treatments.  Sure got a lot done in the quiet. 

Afterwards, I went to Clinique. Just love meeting women who "get it".  A beautiful lady seemed to remember me and it was awesome chatting with her.

Calling all women! Get your mammogram!!!

Walk thru your fear ~

Round 5 + Herceptin

This morning I was due for my Herceptin drip.  My appointment was 8:30am and it was about 9:15 when the IV was administered.  They were really busy and had 70 patients that would be coming through today.  Canzer is everywhere.  I was in a private room and Nurse Bev took great care of me.

L-O-V-E the heated blankets!

I tried to relax my body and quiet my mind enough to take advantage of the moments of stillness. I am so very tired, but couldn't fade into sleep (too much activity outside the opened door). 

Got my blood test done for the Coumadine and found it to be 3.3 (should be between 2 - 4).  Doc Esther's office called me at work with the results and now I am back down to just 1 pill a day.

I asked Nurse Bev if I had been on Taxol or Taxotere.  A friend of mine is getting ready for Taxol and I couldn't remember what I had.  To my "shock", I was on Taxol.  I say this because the paper I received during orientation on the 3 drugs wasn't Taxol, it was Taxotere.

Any reference of Taxotere in my blog is wrong!

Explains my confusion whenever I heard references about my chemo drugs all those months.  I just started to  believe that it was the same drug (namebrand and generic).  Oh, brother!

I made it back to work finally and tried to get my mind focused.  By 1:00, I was incredibly tired and just wanted to go home and sleep.

At 4:00, I clocked out to make it to radiation treatment by 4:30.  They were running behind and I got in a little after 5:00.  I met a lady while waiting and we exchanged stories.  She began a week before me.

One tech this time and I got in & out quickly. 

It was a long week.  I need 5-1/2 hours of make up time and will work Saturday to catch up.  I think I might sleep the weekend away after that.

One week DONE!

 

 28 LEFT!

All Aboard!

 

Round 4

The numbers are counting down fast. Tomorrow will be a week in to the radiation treatment.  Set up is going a lot faster too.  Today, I was in & out really fast.

The best news is that the 4:30 appointment slot became available and I now have it starting tomorrow.  Instead of leaving work at 3:30, I can leave at 4:00.  Really good news.

Getting thru the muck and mire and seeing the finish line



Marsh land in Florida

29 left!

Round 3

So, round 3 on Wednesday was SO much better.  I saw Dr R first and he was certain that I did not have an infection.  He did say that it was the beginning of the redness and tenderness that usually starts two weeks into treatment.  My skin is sensitive and I did warn them about that.   We discussed various creams and he said that they try to give out as many samples as possible (pricey) but they were all out.  The one packet I got the day before will have to due until more comes in.

Dr R also showed me  (my) photos of how the laser beam is hitting the treated areas and my lung is being totally by-passed.  To actually see it for myself makes it all worthwhile.  He was very polite and quizzed me on my physical health and the treatment itself.  I let him know some of the hard spots laying in that position.

Holly & Tim helped me get in position and this time, Tim didn't lock down the right side of my head.  I promised not to move and it was A LOT better.

It put me in a happy place of blue skies and green trees. 

Florida - Best boat ride EVER!

30 remaining!

No Pain No Gain?

I woke up this morning with redness a little bigger than half a dollar.  Feels just like a sunburn ... tight, itchy, hot.  I try to be proactive. I thought by calling the doctor's office this afternoon to get a prescription (or at least a sample) of cream ordered, I could get it after my treatment.  The nurse said that it couldn't be the radiation treatment because it takes at least two weeks  before side effects occur. She actually said

It has to be from something else

(really?)

That threw me for a loop ~ trust me, I haven't been slapped on the boob nor suntanning with my top off.   She said that Dr R would have to see me on Wednesday (he wasn't in today) and I said "I need help with this now, do you have a sample that you can give me?"  Nope, she was all out.  She did agree to have the other doctor in the group see me before my 2nd treatment began.

I made it to the appointment (again with 2 minutes to spare because of new construction that just popped up) and went thru the motions of getting my ball gown on.  This time, I had my spring jacket to zip up the front.  Gave me a bright idea ~ I'm taking my summer robe tomorrow.

The doc examined the situation and seemed perplexed.  She mentioned the word "infection" and I thought "how?"  Doc decided to go ahead and get my treatment (sectioning off the burned area). I agreed to have a photograph taken so Dr R could see if today's treatment made it any worse or not.

It's amazing how all shyness disappears

Two technicians, Holly & Scott (have to double-check that) got me set up.  This time they placed linen all over the arm area to soften it.  I tried to explain the pressure on my forehead, but will have to try (yell) harder tomorrow.  Once that mesh was locked in, the stabbing pain hit.  It didn't take quite as long today, and I was relieved to get my head released from the jaws of death .... (too dramatic?)

Note to self: Remember to remove dangly earrings

Totally forgot to take them off and one got tangled in the mesh.  Holly was quick to help.

So, they did find a sample of cream to try out.  Doc said it cost $75.  I will be finding out how much insurance is going to pay for it.

Tomorrow Dr R and

31 more to go!

Florida where the gators are



First Radiation Treatment & Lessons Learned

I made it to the radiation oncology with 2 minutes to spare (accident on the freeway to get around).  There are only 6 parking spaces in a narrow parking lot, which were all taken.

Valet parking! (am I suppose to tip them?)

Swiped my "I'm here!" card and made my way to the dressing room.  I didn't have long to wait.  I was taken back by Tim & Holly to get things rolling.  Apparently, the film they took before the power went out Friday didn't transfer over in the system.  So, new photos were necessary before the treatment began.  I asked Holly to cushion my forearms a little to help the pressure of holding myself up.  It worked for the most part (although my arms were still shaking by the time they were done).  This time, though, the intense pain came from the hard Styrofoam that my forehead rested on.  When that mesh is clamped down tight, nothing moves and my body & head are PRESSED down hard.

OUCH!

I was in that position for almost 30 minutes.  I'm so glad that one was done.   I need to figure out how to ease that pressure from my forehead.  Have you ever eaten something really cold and you get that  brain freeze?  To me, that's intense and that's how it felt.

Once I got down from the table and "situated", I asked Tim if I needed the cream that everyone was talking about.  He said that the cream treats the symptoms and if you use the cream before the symptoms appear, then you make it worse.  So, wait until then.

Anybody disagree?

Then I asked him how the radiation beam was hitting me .... from the back down to the front? That's what I assumed since the 3 tats were on my back.  Nope, that was just to position and line me up.  From the sides ~ That's all I'm giving you.

Just have to use your imagination

I'm thinking about taking my camera in .... I can't find a photo on the net showing you what the mesh looks like.  Perhaps the tech can take a picture.  After I see it, then you can see it.  Perhaps.

I was explaining to Debbie some more details from when the lights went out and she thought it was really funny. I can't seem to remember everything when I'm writing posts.  So, here is the "addendum".

When the power went out and they decided to let me go home, the table was high off the ground.  Plus, the round part of the machine was just inches above my head.  If you can picture yourself (or me) sliding towards the end of the table

like GI Jane under barb wire

to clear the machine above me; then sitting up just to realize that the table was very high up when the power went out.  Again, I must say, I even surprised myself at how agile I was at clutching my gown closed and balancing off the table onto a 3-4 step ladder.

Ta-Da!

32 more to go!

Radiation Begins

Today, I went in again for the final adjustments with the mesh that was moulded last week. They also wanted to take films. 

This time, only 3 men

(and a woman came in to replace 2 of them)

I'm a pioneer woman! Not like this awesome Pioneer Woman .... no, just the first patient at Akron General to lay "prone" instead of on my back.  That's pretty exciting, right?  I googled this a bit and read (parts) of Journal of Clinical Oncology, which talks about the "prone position to spare the heart & lung".

My forehead and chin rest on the grey

My "generous" breast is getting blasted from the back to the front. 

Awesome

So, after pulling and tugging my legs and torso to line my body up to the measurements taken the first time, they left the room to take the film.  After hearing a few hums from the machine,  the power went out EVERYWHERE.  I laid there for a bit with them asking if I was alright and that if it didn't come back on soon, they would let me up and out of the position.  One thing you should know, since the right side of my upper torso is suspended in air (no board underneath that area), my right arm soon became numb.  

Like doing one arm push ups

I was praying for the tingling sensation to go away .... then Kevin said that he was concerned about the two children in the other radiation rooms because they were under anesthesia for their treatment.  It's hard to keep children still during something like this.  Children.  My mind immediately went to them, off of me.

And I began to pray for them instead

~ Canzer is not fair ~

What seemed like eternity, they released me.  Still no power.

As I was being lead back to the dressing room, the power came back on.  Kevin said that I can either come back Monday to finish the simulation & treatment planning or give it a try again.  I decided to stay and wait the 15 minutes for the machine to power up.

Back up on the table (they were impressed by my agility), lining up again became quicker.  They left the room and finally got all the shots they needed.

Right before I was going to loose all strength, we were done.

6-1/2 weeks = 33 days, Monday - Friday @ 4:00pm

June 4 - July 18

I will miss 1-1/2 hours of work each day (plus time every 3 weeks for chemo).  My boss is allowing me to change my work schedule to include Saturday.  I should be able to put in 40 hours.

I'm tired now .... just wait for totally fatigued!!

A friend told me that I "kicked chemo's butt and I will kick radiation's butt too".  So, that's the plan

grit & determination

Thinking of you Marily ~ rest now and I will see you soon.

My Kid Sister

Happy birthday sweet Cathy.

Sometimes it is hard to look at pictures .... it shouldn't be so, but my heart aches at the loss.  In each picture, she is smiling.  So carefree.

We are going to visit her at the gravesite today and release balloons.  It has been something we have done since she has been gone (Dec 1, 2007).  Our group is getting smaller as we are spread in distance, but we each think of her in our own way .... I'm sure every day, not just today.

I love you and miss you and can't wait to see you again! We will laugh and play, dance and sing.  Forever.

Radiation Planning

I received a call from Kevin at the radiologist today.  I am set up to do some more planning on June 1 @ noon.  I will be using a new table and technique, so he wants to be sure that it is "do-able".  I will keep you posted!

Didn't get a lot done over the weekend.  Slept most of it away.

Sis did make me some pretty scarves from material I picked up from Joanne's. I'll be sure to so you the finished product.

Clinical Trial - Results

I received a call from Dr R about the Clinical Trial.  He said he wanted to call me personally to tell me that we can't move forward with the trial.  One of the qualifiers is that radiation must be started NO LATER than 6 months after surgery.  This Sunday will be 6 months and the "overseers" would take another two weeks to review the treatment plan.  Then he said he "didn't feel comfortable waiting that long to start treatment".

I have mixed feelings about that statement.

So, I am awaiting the call from the scheduling office to set me up for 6-1/2 weeks of daily radiation.

Yippee ~

Mamaw

My heart goes out to my brother-in-law, sister and family for the passing of Mamaw. They are traveling today to be with family and friends. 

Vada, may God comfort you and give you peace.

Oceans of love ~

Road Going Home

Back on Coumadin

This morning, I met Nurse Michael to do a final review on the clinical trial for the radiation treatment. Once the MRI and blood work comes back, we will know if I qualify.  Should know this week!  The computer randomizes the "arm 1" and "arm 2" (6 weeks or 3 weeks).  The "boost" is not a big difference from the standard treatment (1.0 vs 1.5). 

I mentioned to Michael that my symptoms were back from when the port had created the blood clots. Its been about 2 weeks since getting off the Coumadin. So, Michael wanted me to wait on drawing blood and let Doc Esther check things over.  I was holding my breathe a bit because I didn't want an extra test like the ultrasound. I wasn't on the schedule to see her today either.  Mike and I had a great conversation waiting for her.  I like to ask folks why they got into the oncology profession.  He said it was because of his grandma. 

He gave high recommendations of the doctors I have on my team as well.  He said that if he or a family member ever got cancer, he would go to them.  That is real encouragement for me.

Doc Esther came in and sat down in relief.  She had been on the go all morning.  She pressed my underarm and I winced in pain. 

Outcome:  Back on Coumadin

As long as it takes the pain away and prevents a blood clot from killing me, fine by me!

Note to self: Get a medical alert bracelet

I asked her why she was in this field and she said that she loves to learn and loves people more than test tubes.  I just love her! She is real excited that I am taking part in the trial.  She said that is the best way for docs to know what works and what doesn't.  30 years ago, most of it was a guessing game and it was so frustrating.  She also said that the treatments I got were all clinical trials at some point.  I'm honored to be doing it.

Four vials of blood work .... and I expect a call this week for a yes or a no on the trial.

I was so incredibly tired today.

Echo

This morning I had an echo.  Got all jelled up for the ultrasound on my heart before my work day began.  Results should be ready 24-48 hours.

I still amazes me at the many people I meet through this journey who have compassion and want to know my story.  They speak to me of theirs. It is very humbling and I'm thankful for those encounters.

And when they hug me and tell me they are praying for me ....

it speaks volumes!

Getting out of the City

Sunday, Matt & I met friends for lunch and ended up spending the day with them in the country.  The weather was beautiful and the sky blue.  We headed in the direction of Pennsylvania and it was amazing how the landscape changed.

 

We stopped by their home and enjoyed the hens!

 

Then, we went to an old abandoned farmhouse built around 1940. The buildings were delapitated, but there was a newer home on the property. Farmland all around.  I found beauty in everything!  What a wonderful day!

Ice cream afterwards!!

We spent about 6 hours outside that when we got home around 6:30, I wanted to take a nap.  Slept through the night ...... all that fresh air!

Clinical Trial & Tattoos

Have I mentioned how tired I am? Do I sound like a broken record?

Yesterday was a long day.

7:40am - Arrived at the clinic for my Herceptin drip.  My appointment was for 8:00, but I thought arriving early to get my blood work done would speed up the process. Wrong ...

7:50am - Approach the receptionist window "do you want me to go ahead and get my blood tests done at the labs"..... "no, you are not scheduled for blood tests this time, besides they don't open until 8:00" 

Note to self - life is full of waiting, just accept it

8:10am - Nurse Tracy (whom I adore) calls me back and I choose a recliner to get started.  Formalities and verifications were completed and I sat back and watched the drip, drip, drip of the IV.  Tracy sat down for a bit and we had a very pleasant chat. 

The nurses are always super busy, so I really appreciated

this one on one time.  It gave me comfort talking woman to woman.

9:15am - Headed to Radiology Oncologist a few buildings down.  Parking was CRAZY.  Signed in and headed for the coffee machine. By the time I was stirring, the nurse called me in.

Here is where I lost track of time. 

The original doctor I consulted with months ago retired.  So, I met Dr. R and we discussed my status so far and treatment plans.  The subject of the clinical trial came up and we discussed it in great lengths.  As long as I'm eligible and my tests come back okay, I'll do it.

After the breast exam, he mentioned that they have a new machine where the patient lays on her stomach instead of her back. He said "since your breasts are so generous, there would be less potential of damage to the lungs."

I just about peed myself

Next thing I know, the Radiologist technician came in to escort me to the dressing room and then to the MRI room.  The plan was to make a mold of my back so I would stay in the same position during the radiation blasts. 

Four men in the room to accomplish this task

By this time in the journey, I have no issues with shyness.  I don't like it, but hell if I care by now.  Dr R used sticky guides to outline the area on my right breast. 

Then, I had to lay on my stomach. Forehead and chin resting on guards, arms extended over my head.  The longer I laid there, the more my right arm became shaky.  My left breast was squished (ouch!) and my right one hung down to be photographed.  The technician said that the mesh is soaked in hot water and they have only a few seconds to place it on my back and shape it.  He warned me a few times that it would be hot .... and it was. 

I asked if my scarf was going to get wet and he said yes.  So, I took it off.

Mrs. Lex Luther

The MRI machine began to move

During this time, my eyes were closed. I tried to steady my breathing so I wouldn't move or hyperventilate.  I'm claustrophobic. I tried not to think about my arm giving out. Just hanging on to what strength I had left to hold myself up.

I wanted to sing a worship song in my head, but couldn't find the words.

Only one word came to mind and I said it over and over and over.

Jesus. Jesus. Jesus.

He calmed me instantly and then the machine stopped.

After they removed the mold, 3 separate needle pricks marked my "tattoos" on my back. The first one stung, but then my mind tuned it out and the other 2 were not as bad.

Now, imagine trying to "lady-like" get up from a stomach position topless. It must have been a sight!  I made my adjustments, put my scarf back on and was escorted back to the dressing room.

I will receive a phone call by the end of next week for the next steps.

Noon - I made it to work. 

2:00pm - I could barely keep my eyes open so I made arrangements to make up my hours today (4 hours).

I drove home and fell asleep.

Quick Update

I'm in my 2nd full week of work and TIRED.  Last night I went to bed at 8:30. I'm working longer hours to make up time for doctor appointments, chemo and tests. 

Tomorrow is my Herceptin drip (30 min, every 3 weeks). After that, I head over to the Radiologist to find out when my treatments will start.  I've talked to those involved in the clinical trial and it turns out that I may not qualify because of pre-existing conditions on the list.  I will know for sure tomorrow.

My prayers are with Jane right now.  The tumor removed was the size of a small watermelon attached to ovaries and other organs.  May the Lord hold you tightly ~

Mango Could Be World's Healthiest Fruit

Mango Could Be World's Healthiest Fruit
April 24, 2012

Already one of the world's most popular fruits, scientists are discovering that mangos may also be one of the healthiest. Image: Zantastik, Wikimedia
Already one of the world's most popular fruits, scientists are discovering that mangos may also be one of the healthiest. New research, presented this week at the Federation of American Societies for Experimental Biology (FASEB) meeting in San Diego, not only suggests people who eat mangos have a better diet, but the fruit also contains a substance that may have an effect on breast cancer cell proliferation.

Mango consumers may have better diets

The first study presented at the meeting suggests that individuals who consume mangos tend to have a better diet than consumers who do not. The researchers compared the diets of over 13,000 individuals participating in the National Health and Nutrition Examination Survey (NHANES) between 2001 and 2008 to the Healthy Eating Index (HEI), a quantitative measure of diet quality relative to federal dietary guidance. They found that those that regularly ate mangos scored higher on the HEI than those that did not.
Mango consumption was also compared to overall nutrient intake and physical health. Compared to non-mango consumers, mango consumers had, on average, significantly increased intake of vitamin C, magnesium, potassium and dietary fiber, while having lower intake of sodium and total fat. In addition, they had a lower average body weight.

Additionally, lower C-reactive protein levels were found in adults who added mango to their diet. C-reactive protein measures inflammation and it has been suggested that high levels of it in the blood are linked to increased risk for heart disease, however the evidence is inconclusive. Additional research is needed to determine whether the lower levels of C-reactive protein are attributable to mango consumption or other factors.
"We found that adults who ate mangos tended to have a lower body weight, higher intake of fiber and lower intake of fat, all of which are associated with better cardiovascular health," stated Victor Fulgoni, of Nutrition Impact, LLC and lead researcher on this study. The National Mango Board funded this research with the goal of better understanding how mangos can promote healthy diets.

Phytochemicals found in mangos may target breast cancer cells
Another exploratory study presented at FASEB this week and conducted by researchers at Texas A&M Univ. discovered that a polyphenolic compound found in Keitt mangos may be toxic to breast cancer cells. The study, done in vitro (in cells) and in mice, found decreased proliferation of breast cancer cells treated with the polyphenolic extract, and reduced tumor size and weight in mice. Though more research is needed, including human clinical trials, researchers hypothesize that the effects of the polyphenolic extract might extend to the consumption of fresh mango.

"In summary, the anti-carcinogenic and anti-inflammatory activity of mango polyphenolics in breast cancer cells were at least in part due to targeting proteins that play an important role in the survival of breast cancer cells," noted one of the study's lead researchers, Susanne Talcott. "The ability for bioactive components in mangos to reduce cancer promoting cells may be the next big thing in the battle against breast cancer, but more research is needed at this time."

Source: National Mango Board

Clinical Trial ~ Yes or No

Today was my follow-up with Doc Esther after my 6th & last chemo session.  She liked my numbers! Took me off of coumadin!!! And said that the welts I have from the chemo will begin to fade in about two weeks.  Also, she said my hair will begin to grow.  I've just about lost both eyebrows and I'm doing a lousy job drawing them in.  Not like my post Express Yourself

She also wanted to talk to me about a clinical trial to consider.  At first, I was all about helping other women by participating in research.  My grandpa did and my dad did..... but, I'm confused at all the language.  I have a few days to research, ask questions and then give them an answer.  Plus, I will need to be sure that I do qualify with some more testing.  Then I read about clinical trials and insurance.  Will this be covered?  That will be a BIG factor.

Any feedback would be appreciated



Next on the treatment schedule: daily radiation

Next visit to my chemo oncologist: August!

Side note: I asked Doc if I had aggressive cancer.  She said that because I tested positive on the 3 protein tests, that they had to "throw the book at me".  Hmmmm .... What are my chances of getting it again?  She said "we are going to make sure it doesn't come back again". 

I know there are no guarantees in life

But I do have faith.  I do have a positive outlook.  And I know this Doc knows her stuff.  So, even if that day should ever come, I pray I handle it with grace.

Our Last Meal

The time spent with Casey is coming to an end.  We take her to the airport tomorrow.

Tonight, we took both girls to dinner at Quaker Steak & Lube.  That is the first time that I've been and Matt has been wanting to go for years.  We finally did it.  I kept my meal light with soup & salad.  It was great just hanging with the girls.  I sure do miss that.

As I heal from the last chemo and prepare for the next plan of attack ~ radiation ~ I've been giving myself pep talks.  It is amazing that I made it through the chemo sessions.  I don't have a lot of fears (when it comes to myself) but just one, if it comes back, will it come back with a vengeance? How will I handle that?

Well, I named this blog "Living in the Moment". So I tell myself, stay in THIS moment. Smile in THIS moment. Share in THIS moment. Give in THIS moment.  And most of all, TRUST God in EVERY moment.

Sometimes, I don't feel worthy

When I read other women's blogs, or turn on the news, there are so many who need healing, who need miracles .... we all need to remember this mighty verse:

Trust in the Lord with all your heart;

do not depend on your own understanding.

Seek His will in all that you do,

and He will show you which path to take.

Proverbs 3:5-6

Greenville, SC

Celebrating Education

My daughter is celebrating graduation for her Masters.  She has been a student for 22-1/2 years of her life.  That is a long time!

I just wish I was in better health to celebrate fully. 

Friday was a ceremony called "Hooding".  Matt had to be my camera man, as I was too weak and sick to make it. 

Each student was honored with a short autobiography and their sashes.

The commencement was Saturday morning.  With the help of a borrowed wheelchair, I was able to make it.  It was very beautiful and I loved the speakers.  Once we got home, I went back to bed.

We met at a local restaurant Sunday afternoon (again with the wheelchair), and family & friends got to congratulate her and give hugs.  Again, as soon as we got home, I went to bed.  I've been there ever since ~

It just turned midnight May 2 .... 

O Lord, you have examined my heart and know everything about me. You know when I sit down or stand up. You know my thoughts even when I'm far away. You see me when I travel and when I rest at home. You know everything I do. You know what I am going to say even before I say it, Lord. You go before me and follow me. You place your hand of blessing on my head. Such knowledge is too wonderful for me, too great for me to understand!....

You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous--how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! 
Psalm 139:1-6, 13 - 17

I've done a lot of stupid things in my life.  Ha! But had 2 moments of brilliance! The birth of 2 daughters ~ Yep, I'm a lucky girl ~