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