MRV

The MRV has been scheduled for August 2.  I really don't want to go to anymore doctors or get anymore tests.  I think this whole headache thing is a combination of stress, cancer treatment, medicine and vision.

I had my eyes checked Sunday afternoon and ordered new glasses.  I bet that will help.

Been without my scarves and hats since last Thursday 26th.  It feels really good!

Taking one day at a time ~

It's all in my Head

Thursday morning was my appointment with the neurologist.  The night before, I had stopped at the lab to pick up the CD of my brain MRI.  He seemed to be very thorough as I answered quite a few questions.  On a side note, he commented on my high arches and gave it a name (he was going to write it down for me, but forgot at the end of the appointment).  He said that "we will deal with that later".  Lots of pin pricks on my feet and testing the reflexes.  I still have some neuropathy.

No signs of MS.  He was actually surprised that my family doctor suggested it.
hmmmm.
No signs of TIAs or stroke.

I've had a history of migraines since I was a young adult, but I haven't had any for at least 20 years. Back then, my migraines would be accompanied by loss of vision, sensitivity to light and numbness around my mouth.  These headaches don't have that. He wants to explore that further.

He ordered an MRV that will show a different view to see if there is a blood clot. I'm waiting for them to call me with the date/time.

My headaches haven't eased up since I complained about them weeks ago.  It's been two years since my vision was checked and I've had trouble focusing while reading.

Eye exam scheduled for Sunday afternoon

Also, I feel like a medicine cabinet and I know that most of the meds have headache listed as a side effect.  He mentioned that my pain medicine will give me headaches. 

What a vicious circle



After that appointment, I went to see my oncologist.  I wasn't scheduled to see her until end of August.  When I got home after work on Wednesday, my veins were extremely pronounced like the last time (hospitalized for blood clots).  1) it was after hours, 2) i've never called her, 3) really didn't want to go to ER .... but, it had me concerned enough to call her.  She told me to come in after my neurology appointment.

No blood clots (not sure how she could tell).  She said it was the heat ... REALLY? It's been sweltering for weeks and my veins weren't bulging.  Then she said glad that I came in anyway, because I have a fungal infection.  REALLY? 

Oh Snap!

She wrote a prescription for 5 pills Fluconazole. More side effects! 

By this time, my head was really pounding





Instead of trying to go to work, I went home and slept.  Which, of course, I didn't sleep well during the night.  The next day (today), I woke up still with a headache.  What's going on?

As today wore on, so did my headache, this time with dizziness.  I left work 2:30 and made it safely home and to bed.  I woke around 5:30 because I really want to be able to sleep tonight.

As I mentioned before

welcome to my roller coaster ride

Aunt Becky's Flowers



By the way, went to work with no scarf or hat.  It felt good! 

Creams

Dr R prescribed a different cream when I saw him July 18.  In just the past week, I've seen a dramatic improvement from the radiation burns and torn skin.  Wow, why didn't he give this to me in the first place?!

Silver Sulfadiazine 1% cream

Others I've tried:

Xclair - no improvement, left stains on everything it touched

Aquaphor - no improvement

Cortizone - helped with the itching

Have a GREAT day!



Beauty in Everything

Wow, can't believe how much I tackled tonight after work. I'm usually down for the count after dinner.  Got the kitchen table completely cleared (mail, flyers, this-n-that). 

Last March, Mandy helped me press some flowers from Rickie's spray.  I had 18 books stacked on the floor in the kitchen with newspaper and flowers neatly arranged between the pages to dry.  It worked well! There are some really beautiful and delicate dried flowers and I hope to create something special.  It's now July .... nice to have that clutter picked up! 



My grandma made a keepsake from my grandpa's funeral flowers.  That was back in 1974.  I still have it, as I'm sure my cousins do as well.

Any creative ideas out there?



Use to be bright yellow



My BFF's mother is on her own journey.  She shared a message she received and gave me permission to share it.  Beautiful ~

Your mom’s shaved head is her badge of courage and unity.  SO many women wear the same badge. Tell her to wear it proudly. It shouts out her spirit, bravery and strength.

Your tears (collectively) are the glue that comes straight from the heart and it binds you all together.  You are far stronger together than alone.  You have no idea how strong you CAN be.

The ache in your heart is actually a strong reminder that you can love others so much.  The more deeply you can love,  the more deeply you can ache.  Unfortunately you cannot have one side of the coin without the other.

Thoughts and prayers ALWAYS.

God Bless – Stay Strong – BE Well
Marshall



Some "Firsts"

I started out wearing my scarf to work today and then got "brave" and took it off....about 4 different times.  I thought I was easing folks into my new look, but I think I was easing myself into it. 

Around the house, out on the porch, to the driveway and back, I'm bareheaded .... and at our family gathering yesterday!

Dumb pose ... but you can see my port on my left arm

My sister had fun snapping some pictures and she did a great job! I'm in the process of uploading to shutterfly. (love that site!)

Today I wore a dress to work.  I've been thinking that this is a "first" as well (after almost 9 years of working there) .... but a co-worker said it was the second.  Thank goodness I have someone to keep me straight.

That's really all I have of the "firsts" .... either I can't remember any more, or I've just run out of them.

So ~ anyway ~

I've been doing some deep thinking, now that my head is getting a little bit clearer.  As the words come and I can articulate them, I shall share.  Until then, 4 words come to mind.

Grace

Mercy

Hope

Love

Once I start to build my strength, I'm going to finish putting up the get well wishes on my wall.  I only have 2 rows up so far (work in progress)

Yarn, push pins, and tiny (craft) clothes pins

Oh, and just a note to those folks who are signed up for the automatic post in your e-mail: Don't forget to check out my blog from time to time.  I have other tabs that don't arrive in your e-mail.  Maybe there is something else that might be of interest as well.

Today is for Family

Today is Sunday .... totally lost all of Saturday.  I'm impatient to get back on track, but my body is telling me otherwise.  We had planned for some time to go see the hot air balloons on Saturday with our friends.  I felt bad to cancel :(  Megan, we are going to the next one for sure!!!

I had a stupid mini meltdown in between my sleep because I kept thinking that everyone is going to expect me to be up and adam with energy.  Hubby reminded me that I had chemo Friday and to give myself a break.  Plus, I work full time and make up my hours that I miss for treatments and doctor appointments. 

Friday's chemo went smoothly.  Nurse Karen gave me a toasty blanket and I leaned back with the pillow and took advantage of the peace.  I then asked for another one .... they feel so good warm from the oven.  It's mighty hot outside, but the air conditioner in the room was blasting.  Fall is my most favorite season.

So, today is a new day ~ I'm looking forward to seeing family and to give my cousin bunches of love to take with her as her unit is being deployed.  Prayers to Laurielle ~

The Last Glow

As I say goodnight to my co-workers each day, I say "leaving to get my glow on."  And the doctor confirmed today that this is my last one. 

Relief

It was bittersweet saying good-bye to the techs, to the nurse, to the cleaning woman and even to the valet attendants.  Their familiar faces, their smiles and the chit-chat we shared over the last 6 weeks....I am grateful for them.

They gave me my mesh, which I'll take a picture of it and add it to this post in a few days. 

The nurse took me back to see Dr R and gave me discharge instructions.

Wow, DISCHARGE instructions!

Music to my ears ~

• Fatigue - pace yourself and get 8 hours of sleep each night
• Pain at sites being treated - take pain medicine as directed
• Skin reaction - continue using ointment given to you until your skin heals. Avoid sun exposure without sunscreen. If sun exposure, use sunscreen with SPF 30 or higher.
• Hair loss at treated site only
• And then the standard watch-outs, i.e. bowel changes, cough, nausea, headaches, etc

Then Dr R comes in and confirms .... it is the LAST radiation session.

He said to avoid sun exposure without sunscreen for the rest of my life.  It will always be that way. 

Good thing I don't frequent the nudist camp anymore.

He said that the hair follicles under my arm may prevent hair growth. No shaving?....

Cool! We should have treated the other side as well. 

He said that the radiation is still working inside of me and that the side effects will get worse over the next 2 weeks.  He prescribed a different cream along with 2 over the counter creams to try.

It feels like someone cut my nipple off with rusty scissors

Was that too graphic? Sorry ~

We discussed some of the difficulties of laying in the prone position (face down) and some possible solutions.  Hopefully, I helped in some small way.

I am scheduled for a follow-up in six weeks.  I can't tell you how relieved I am that this part is over. 

This Friday, Herceptin

Thanks for walking with me thru this part of the journey ~

Peace Be with You



One more to Go, Baby!

Can I get an Amen!

Today, I'm finally starting to think about the things I want to do when I have more energy.  Remember my new year's resolution?  Declutter! Simplify! Control your "things" before they control you ~

In no particular order (just to name a few)



I want to go for a walk .... without pain in my feet and fatigue
I want to go for a bike ride
I want to explore the Metro parks for a full day with my camera
I want to think more clearly
I want to volunteer my time again with things that are important to God
I want to have more energy
I want to make another shutterfly book
I want to take a photography class
I want to take a vacation!
I want to get involved in life again
I want to pay it forward


Tomorrow, my last treatment is 5:00 (instead of 4:30).  I will also see the doctor.  At that time, he will tell me the next step .... hopefully releasing me from my glow sessions.

The moment of truth



My neighborhood

Canzer

Remember, make it mad by misspelling it ~

I'm nearing the end of my radiation treatments.... 6-1/2 weeks.  When people ask me which is worse, chemo or radiation, how can you answer that? They both suck.  By the middle of my cocktails, I really didn't think I was going to survive it.  There were some dark times.  And I can remember telling my husband that if I got canzer again, I'm not doing chemo again.  The pain, the fatigue, the ... everything. 

And now I have

2 more rads left

I should be celebrating and I suppose I will be.  It's just that there is a feeling inside that "2 more blasts and is that enough so it doesn't come back?" 

Certainly, the Herceptin will complete the task. (?) I take that through December. 

Then, the 5 year pill.

My journey isn't ending just yet.  Treatments every  3 weeks (better than every day), doctor's appointments, tests when ordered.  Yep, still walking thru my journey. 

So many others as well

I met a wonderful lady today in the waiting room.  Today was her first day.  Wow, I remember my first day.  Even though our sequence of treatments and our stages were different, we both have cancer.  It affects so many of us.  She was the first in her family, like me. This terrible, complicated disease can just push its way into anyone's life. 

As a reminder, if you come across someone with cancer, treat them like a human being.  Acknowledge them with a smile. Respect them. Don't say stupid stuff (read books if you want to know what not to say)  That person is a mother, daughter, sister, aunt, grandmother, someone's best friend.

Okay, I'm off my soap box now ~ Check out Nancy's post and go from there.


Michelle .... FIGHT!

From Red to Brown

I spent the day with mom.  We went to Applebee's and then to Wallyworld (aka Wal-mart).  Bought a new iron and some of this and that.  Got the movie A Dolphin's Tale that mom wants us to see.  She said the little boy reminds her of Cathy when she was young (tom-boy) with freckles.

Also bought a soft pair of pjs, which I am now wearing with an ultra soft camisole from the breast center. 

The treatment area from the radiation is changing from sunburn red to brown.  Very dry, itchy, tight, painful, raw.  The pain pills aren't even taking the edge off.

I've had some wonderful private messages from friends. You have uplifted me and I am sincerely touched. 

I know it's early, but off to sleep I go!  Peace be with You!

3 more treatments left!!

A New Friend

As I was getting my ball gown on for my glow session, I met a lady who just had her simulation.  We chatted like ol' friends to the point the tech sat down in the waiting room and waited. I gave her my link to my blog and she gave me a book "Healing from Heaven". 

Thank you, Lisa, may your journey be blessed

I'm feeling pretty raw, itchy, red and tired.  Picture a crack on the corner of your mouth and every time you open your mouth, it pulls the wound. Ouch. That is what it feels like.

I am still walking with God and with every fiber of my being.  The brokenness in this world tries to trip me, to see if I will fall.  My feet are planted firmly in the foundation of God.  Others do not see or understand my intentions, but God does.  He knows my heart and I am grateful for that. 

4 more left!





The Boost

Yesterday, treatment was not-so-great. They had to take photos and set up a simulation for the "boost" ... then do the last of the "standard" treatment.  I had some tears leak from my eyes as I tried to deal with the pain of the position.  The placement for my forehead and chin still really hurts. The bottom edge of the rounded out hole presses against my lower rib.  (imagine all four fingers under your rib and pulling up).  The tech told me to take pain meds before coming, which I replied "I drive myself here and home. I can't take my pain meds."  She then said to take Tylenol, Advil or some type of OTC.

The day was full of all kinds of drama.  As a result, my youngest daughter has yet again walked out of our lives.  As much as she said she has changed, her true colors showed loud and clear who she really is.  It breaks a mother's heart.  I would rather be punched in the gut, shot in the heart or stabbed in the back than to witness her holy bible dumped in the trash can.  A very numbing day.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Today's treatment was just as long as yesterday's.  This time, I took a pain med right before I left work.  By the time I was clamped in, it helped somewhat.  The tech recommended that I take one for the next few treatments.  Today was more photos, films, whatever they were doing

PLUS my first BOOST

6 left!!!

After treatment, the doctor examined me.  I showed her the worst part, which is torn, raw skin in my cleavage. She gave me samples of the Aquaphor and actually apologized for what was happening to me from the treatments.  That was nice of her to say because it isn't her fault at all.  I'm doing well considering I didn't get major red until now and I only have a handful left.

For other news, I went to see my family doctor this morning regarding the MRI ordered because of the frequent headaches.  He wants a neurologist to take a look at the films and assess to rule out things .... oh, when they say that, do I really want to know what "things"?  Guess there are some questions regarding my white matter and my gray matter.  The radiologist that ordered the test mentioned these "matters" to me, but I really wasn't following what he was talking about.

Then Doc W threw me a curve ball. MS.  Really? What is multiple-sclerosis?

The other possibility is migraine headaches.  That's believable, considering I use to get them all the time.

Then, of course, it could be stress headaches.  I mean, the past 8 months have been quite a lot to take in. (but I thought I have been handling it pretty well, considering)

I can't really put into words what I'm feeling right now because I'm still processing it all.  It would be great to get answers to troubling aches and pains .... but then sometimes I feel "do I really want to know?"

Doc W said it is good to find things early. 

That is true.

Neurologist is July 26



Radiation - Week 5

End of Week 5 = 24 days (minus July 4)

Did you know that any day missed is tacked on to the end of treatment?  It was great getting a day off treatment in the middle of the week, but instead of ending July 18, it is now July 19.  That's okay, it could be worse.

The two nurses were checking out the rash-like appearance a little below my neckline, down my cleavage and on my treated breast.  It feels like a sunburn, looks like sun poisoning.  They were analyzing if it was a reaction from the XClair ointment. 

"Are you allergic to nuts or nut oil?" the nurse asked.

"Not that I'm aware of .... nothing happens when I eat them." I answered. "A friend of mine mentioned Olive Oil as a soothing agent.  What do you think about that?"

"Well, Olive Oil is pure, we will have to ask the doctor."

One of the nurses suggested that I stop using the ointment to see if the symptoms disappear (process of elimination).

Note to self: Remember to ask the doctor when she comes in

I was given a coupon of Aquaphor and then I waited for the doc.

My doc is out of town for the next 2 weeks, so I saw the lady doc who said "yeah, I remember you" as she came in the room. 

I opened my ball gown and asked, "Is this a reaction to the ointment or to the treatment?"

"Definitely the treatment," she said. "I've seen it many times."

I'm sure she has.

"Really? All the way up on my chest?"

"Where do your breasts stop?" she asked.

"At my knees?" I gave a little smirk.

 Loved the smile and the Doc's body language relaxed.

"No, no .... where do you think they start?"  I pointed to the top of my breast, "Here?"

"No, actually, here." (Ladies, take your thumb and put it at the top of your cleavage, then span your hand open with your first 2 fingers touching your armpit.) "That is the whole area we are treating with radiation," she informed me.  That's pretty high up on the chest wall.  Interesting.

I asked her about the Aquaphor ... she shook her head "No."  I asked her about the Olive Oil, she said that I could try it if I wanted to, but make sure that it is completely off before treatment.  Coming from work, I don't think it would work out very well.  I will try it over the weekend perhaps.

Another tip, no bra or 'restraining' my sistas.  Okay, but not at work! Jeez!

Again, I just finished week 5!!!!!!!!!

The tech told me during today's treatment that on Tuesday, I will have my last "standard" glow and then will go thru simulation to prepare for the "boost" (7 of those).  Tuesday, prepare to be here for a little longer.

As I left radiation to claim my keys from valet, Millie came out of ER to give me a hug.  What a very nice surprise to see a friend that I haven't seen for quite some time.  I went into ER with her to see who she brought .... Nancy.  We caught up with each other and gave plenty of hugs.  It sure was wonderful to see them both again.  Any day, ladies, we can get together for a glass of lemonade or a steaming cup of coffee!!!

Nancy, get well soon and YES, we will get together

Prayers to Lois for her surgery Monday and for Sandy's surgery as well ~

Prayers to Tina for the beginning of her father's journey ~

Prayers to Jane for keeping strong during her journey ~

Prayers to Marily as she awaits her next steps with radiation ~

Prayers to a fellow patient who's radiation treatment ends Tuesday ~

Chipmunk on the bank of the river in Colorado

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.