Add another item to the list

Nurses double glove and wear plastic
 gown when administering

Aleve pain pills....for the deep, agonizing, painful side affects of the Neulasta shot.

Nobody should have to say, 
" I feel much worse today than when I woke up from my last brain surgery."
"This feels like the worst flu ever."
And my question, "Why is the medicine that will heal her making her feel so terrible?"
‪#‎Chemosideeffectssuck‬

Arf! Arf!

Arf! Arf!

I had a hard time sleeping Saturday night.I spent the day with Kathy. She had to go to the hospital to get a shot of Neulasta. It is a booster shot patients get 24 hours after chemo. 

The syringe full of good stuff

The drive to the hospital took about 22 minutes. I knew she was already not feeling well and the ride to the hospital and back in my tiny clown car surely did not help. Every bump and swift turn brought a slight grimace from my usually smiley sister. We were smart to pack our travel size barf kit. It's accessories include wet wipes, a towel, and a small bottle of water.  Later in the day there were more things not on a "list." I had to make an extra trip to the drug store  in the evening for some antacid and some Miralax. Chemo doesn't waste any time. 

Throughout the day, friends and relatives were checking in to see how Kathy was doing. One question that kept coming up was ,"Is she barfing?" The answer was "No, she just feels like she has a bad flu and is really tired." Most of the people I know who have recently been treated with chemo only had some mild issues with "the bucket". 

Kathy went to bed pretty early and I stayed up and played on my computer. I went to sleep and woke up about 11:00 pm. My first thought was "Is Kathy OK?  Should I check on her? Why did I wake up? What was that noise?"

I finally fell back asleep and woke up again this time to a sound...was it Kathy? Did she get sick? I listened again....It was the dog Arf! Arf! 

View from the parking garage at the hospital. 

Expect the Unexpected

The short story is round one of chemo is over. Kathy talked, smiled and slept through  the entire 6 hours. She felt fine when we got home, laid down for a nap woke up and said, it feels like something happened to my body....welcome to chemo. 

Yesterday we arrived at the hospital ready for a long day of chemo treatments. Kathy's bag was packed with all the suggested items, Kleenex, mints, chapstick, lotion, I-Pod, electronics, crackers etc. While the nurse was preparing to take a blood sample from Kathy she asked if she took the "pill" ..We looked at each other and said what pill? It turns out she was supposed to take a steroid type pill 12 hours before the appointment...No Chemo...

But it really was a blessing, It was a beautiful day and we had a great lunch together. Finished up some errands and went to fill the prescription for the super steroid "pill" and some anti nausea pills. This is when I find out about how screwed up the medical system is..The pharmacist tells us the nausea pills are not covered by the insurance and it would be $130.00. "Are you kidding me?" I said. I got on the phone and called the nurse she told me to go to Costco they would be $18.00. Yes, the same pills at Costco were really only $18.00. I don't get it..

Kathy was blessed by angels the rest of the evening, she had some special mother daughter time over pizza and salad.  (Shhh don't tell her doctor, he says salad is bad for chemo patients, it has dirt and bugs on it) Then when dinner was over and she received the check , somebody had paid for her dinner...It was completely unexpected and she said that had never happened to her in her her life...pretty cool..

a week in her boots

Kathy had a busy week.
 She gave blood on Monday,
 had a heart test on Tuesday,
 had outpatient surgery for her chemo port on Wednesday,
 had more bloodwork and a steroid shot on Thursday,
 and wrapped up the week with her first 6 hour session of a  chemo cocktail also known as "Red Devil".
 Sorry for the giant run- on sentence.
Add to this; being a loving Mom to 3 teenagers, cooking, cleaning, shopping, and going to basketball games at the school.
When I saw her last, I gave her my favorite pair of boots. I hope they helped her "walk through this week."

Tickled Pink

     Today was an incredibly busy day I wish I could say it was a day of incredibly fun adventure such as a trip to Hawaii, a relaxing day at the spa or even a carefree day of window shopping.  Most of the day had a lot to do with …(insert swear word of choice)….cancer.  Our first stop was to a little boutique nearby called Tickled Pink http://tpwigs.com/. It is a wig and hat boutique owned by a wonderful lady named Susie Kirch. The boutique was the idea of Susie’s niece who had lost her hair to chemotherapy and wanted to cover her head a cap and a wig. After feeling embarrassed and uncomfortable shopping for them at a local beauty supply store they decided to create a boutique for women to come and shop for wigs in privacy and comfort. After some nervous laughs and a few bad bald jokes Kathy began to try on hats. She is very confident of what she likes and every one that she tried on looked awesome except the cream colored one….Oh that cream colored one, I looked at her in the mirror and without hesitation I shouted, ”Take that off you look like the Captain from Captain and Tennile!”  Under my breath I sang a few lines of "Muskrat Love".

 Tickled Pink was just what we both needed, a warm, safe beautiful haven away from the harsh clinical side of cancer. The rest of our busy day included multiple phone calls from doctors and clinics setting appointments for next week and some grocery shopping. The final part of the day was the best. We watched Kathy’s son Jesse play a great game of basketball. I am going to sleep tonight with a smile on my face. I got to spend a day with my sister laughing and crying, shopping, and talking. 

Kathy's Team

A quick update: Chemo will start soon and we need everyone on the team to get their flu shot asap. Her doctor explained that she will be like a newborn baby.

This means having very low immunities. In addition, she will also have the bald head of a newborn, my brother, and my father! Kathy has insisted that no women shave their heads in support. (Insert my sigh of relief here.)

Kathy is feeling strong and preparing to kick a$$!
I have added the term "fbomb" to my spell check option as I have no intention of "auto correcting" those.

I also have some new socks that will keep my feet warm while I assist in the a$$ kicking of all cancerous tumors.

BOLD

-Adjective-not hesitating or fearful in the face of actual or possible danger or rebuff; courageous and daring:

-Today I cried. It wasn’t the kind of crying that leaves you with a stuffy nose and swollen eyes, it was tears of emotion pouring out of my eyes. You see I am not a “cryer”. It takes a lot for me to show strong emotion. I have been staying strong for the past 6 weeks since Kathy found out she has breast cancer.  Every day for Kathy is dotted with another what if, why, when and how. What if I need Chemo? Why don’t I have a firm diagnosis? How will I pay for all this? How is this affecting my kids?

 The funny thing was that my tears fell at the strangest time. I was at an assembly today at the school I work at. The assembly was about bullying and was sponsored by a non-profit group called Boldly Me.

The main speaker was Alana Powell the founder of Boldly Me. Alana has alopecia. Alopecia is an autoimmune disorder which affects the hair follicles. Some people with the disease only lose patches of hair, while others lose all of their hair.  Alana spoke about her life with and without hair, how she always felt different, and how three years ago she finally took off her wig and walked down the street confidently and without fear of being different. Then she suddenly took off her wig in front of half of our school. That was when my waterfall of tears started. I saw so much strength, determination, and courage in that one brave moment. I looked up at Alana and she too was crying.

I see that same strength, courage and determination rising up inside my little sister Kathy. Yes she is becoming BOLD! Her last post SPIN CYCLE described all of tests she has recently endured.   Nothing is fun or funny about  tests or surgery but somehow Kathy found a way – her motto- Just get on the gurney- in other words don’t hesitate, or be fearful in the face of danger-there will be a shift..your bully will become powerless… Be BOLD!

By Mary Bessler- Kathy’s sister-

Spin Cycle

I am tired tonight.  Faith is energizing, fear is exhausting.  Fear kept me awake last night.

What is “odd” to me is it seems the things I would think I SHOULD be most fearful of, are the things I am actually the least fearful of.  This five-week “journey” started with a simple mammogram. (Not scary. I’ve had them every year for the last seven years)  Next, the ultrasound--EASY! The core biopsy was next. (Not so easy, and pretty painful.) The outpatient sentinel node biopsy surgery followed the core biopsy. The radioactive injection prior to the node surgery was painful, but  I felt no pain while I slept through the surgery.  I had surgery on Thursday and was back to work on Monday. Next, a PET scan. The injection was a bit painful, but the scan a piece of cake. And finally, the MRI. Again, painful injection--easy scan.  And this was the first scan of many that I actually got to listen to music!  (I had to wonder if insurance would cover the music--oh well!)  I am now waiting for an appointment for hopefully my final biopsy, a needle biopsy to my acetabulum (hip/pelvic area/bone).  No lie--I don’t know a lot about this procedure yet…but this one sounds painful and probably does not include music.

The past five weeks of needles, IV’s, radioactive injections, blood draws, surgery and scans have been difficult.  Okay, that’s an understatement.  For lack of a better expression, these weeks of procedures have “sucked.”  Waiting for results from biopsies and scans has been difficult.  The upcoming needle biopsy sounds “exceptionally uncomfortable” to me (understatement). 

It would be a flat-out lie to say I haven’t been afraid during these procedures and scans.  I have been afraid.  But there have been only two nights so far, when my mind would just not “shut down”.  It’s as if my mind is just stuck in the spin cycle of the washing machine.  So many thoughts, feelings, questions, endlessly swirling around in my mind.  Wishing I could just “pull a plug” and put my mind to rest.   Last night was one of the nights I was stuck in the spin cycle. The other night was December 23rd.  They were the nights before my appointments with the oncologist.

The  fear factors:  needles, injections, biopsies, surgery, waiting for results.  That stuff just sounds scary.  Meeting with the oncologist to “talk”?  Why would that keep me awake at night, stuck in a spin cycle?

Fear of the unknown keeps me awake. Procedures have parameters.  The needle will be so-and-so size.  I will be injected with (fill in the blank). The incision will be “this big”. The imaging will take “X” minutes.  And, hey, guess what? You get music included with this scan!  I KNOW what to expect with the procedures. I KNOW they will only last for a certain amount of time.  I KNOW I will manage to get through them.  The more I KNOW, the less I fear.

The oncology appointments, however, I fear.  There are way too many UNKNOWNS.  On my first appointment, I thought I’d walk out with a complete diagnosis and a treatment plan.  Nope.  Nada.  Not enough information to do so.  More testing, the PET scan and MRI.  Ah! What more could be needed?  In five weeks, pretty much every part of my body has been poked, cut and scanned.  Surely now the oncologist would have all of the information he would need to diagnose me and create a treatment plan!  Right?

Wrong.  Today I found out about the plan for the needle biopsy.  The results from this, hopefully final, test will allow him to conclusively stage the cancer and make the treatment plan. 

Enter the fear factor again--the UNKNOWN.  Stage 3 or 4? Big difference.  What will come first? Surgery, radiation or chemo?  Anna wants to know if she could “get this.”  Luke wants to know if I lose my hair, if it will EVER grow back.  Jesse just wants “it” to go away. (Yea--ME, TOO!)  How well will I tolerate treatment?  How long will each treatment last?  How big will all of these  medical bills be?  When will I be back at work?  How will my LOVED ONES get through all of this? And finally, is insurance actually going to pay for the music with each MRI scan--or will that be billed separately?

Tonight, I am left with the fear of the unknown.  I’m not sure when my next truly sleepless night will be.  I don’t have another oncology appointment scheduled yet.  I am tired tonight. No, that again, is an understatement.  I am exhausted.  My “spin cycle” hasn’t quite stopped yet.  There are still way too may unknowns.

 

-Kathy

No news= Good news

I can say this.
No news is actually good news...
but still we wait.
The MRI results were not conclusive so next step is a bone biopsy of the suspicious spot on her femur bone.
No date yet on that surgery (biopsy).
She already has a history of two very, very rare tumors- the one on her pituitary  and the other in her sinus cavity...maybe this is a third???? I wish Dr. House was a real doctor!

Oncology Eve

Not sure what to do with myself tonite. It is Oncology Eve, the night before Kathy meets with the Oncologist to find out her prognosis and treatment plan.
 I should take down the Christmas tree but I want/need another night of the "magic" in my house. I could definitely use a drink but Oncology Eve is a sobering event. It is a new year but I am not moving forward...just frozen, wishing I could turn back time. Wanting with all my being to wake up tomorrow from a very bad dream...