Got into Texas Health and Human Resources today, and the lady I saw there said that she was pretty sure I would be denied for Medicare.
That’s good cuz I don’t want to loose my Xeloda PAP.
I called Xeloda and brought my case up to-date. They are shipping out a new supply.
That’s good cuz I am almost out…
Some good stuff going on…
Only its not hairs that are splitting,
it’s now the skin on my feet that is splitting.
The past 3 weeks it was my fingers – spits on my fingertips and along my cuticles that made it necessary to wear band-aids and finger cots to protect my fingers.
Now it is my feet.
Especially my heels
Painful splits
Until now, it seemed that I might be able to “dodge” the Hand-Foot Syndrome that is one of the side effects of the Xeloda that I’m taking.
I’m slathering my feet with cream and aloe gel and then sleeping with socks over all that.
Offering some relief, but still is painful.
I’m literally walking on eggshells.
At least it Feels like it.
Painfully painfully so…
Tags: Hand-Foot Syndrome, splits, Xeloda
The prescription for steriods is long completed, but I’m still having some soreness in my lymph nodes under my neck and the headaches are coming and going. Yes – headaches are side effects of several of the meds that I am taking, but it just seems that the headaches have increased lately. More in number and more severe in pain.
It’s scary.
I’m scared.
My head hurts
I have a PET scan coming up tomorrow, so – depending on the results – might discuss having a head/brain scan run in the near future. I realize that the cancer spreads in an “anticipated path” – bones, liver, then to brain. Hopefully the PET will show that my liver is still clear, so we can Presume that my brain is clear.
Presume…
What a brave word
to Presume.
Almost like Faith.
Presuming Faith.
My head hurts.
Tags: headache
Again, I am short on finances, so I have to scrape to come up with my payment.
I’ve been saying the charge is for the monthly supply of Sodium Phenylbutyrate (PB) meds from the Burzynski Clinic, but I’ve come to be informed that I am a clinical trial, and as such, do not pay for medication. What I pay for is the case management – for medical case management.
I get the PB meds for “free”.
Ok, still doesn’t change the fact that I am not going to be able to afford this much longer unless something happens.
The cost is $4,500.00 for a month of Case Management which includes the Sodium Phenylbutrate, AminoCare A10…
More than twice+ my entire monthly salary for only ONE of of the five medications that I take in this battle.
The small savings I had are gone.
The donations have dried up.
I am scraping by.
Scraping.
I went through a period of some personal depression which waylaid the fundraiser efforts, so I’ve got nothing there right now.
Need to get back on my feet there.
Shake myself and get going.
CHARGES TO-DATE:
Burzynski Clinic Monthly Charge – October 2009
Burzynski Clinic Monthly Charge – September 2009
Burzynski Clinic Monthly Charge – August 2009
Burzynski Clinic Monthly Charge – July 2009
Burzynski Clinic Monthly Charge – June 2009
Burzynski Clinic Monthly Charge – May 2009
I really am tired of…
Excuse me!
Pardon me!
I am So Sorry!
Oops..
How Much embarrassment can a Gal endure?
I Swear, if I have Any More Gas come from my Body, I will Simply Float Away.
So how Totally Cool is it to run into someone who has been reading your blog? Someone that you don’t know… Not Family, not Friend - a stranger who is reading!
This happened to me yesterday, at the Infusion Center, while getting my port-a-cath checked out.
I was waiting, and a Gal and (who I presumed was) her Hubby come in. Turns out that Mrs. Gal is also a breast cancer Warrior.
Unwilling members of the club we are.
We talk a bit, the 3 of us. About our treatments, about chemo, about my choice of Burzynski, about Sodium Phenylbutrate (aka PB). Mrs. Gal is on PB for an unrelated medical condition – she takes 40 tabs per day when needed. FOURTY TABS! OMG! The 24 I take daily beat me down, just Beat.Me.Right.Down. I Can’t Even Imagine 40! Maybe it doesn’t affect her like it does me… Maybe its different cuz of the different medical necessity? Or maybe she is in a whole heckuvalotta more than I am…
We continued to talk. I got the impression she would have preferred not to, but she was unfortunate to be sitting close to me and I reach out to everyone.
My Bad Habit for those who are not so chatty.
Anyway…
Maybe the nurse saw something and wanted to “rescue” Mrs. Gal , or maybe she didn’t like us talking about unconventional treatments, maybe it was something else entirely. The nurse decides to place me in a “private room” for my port access. Before I leave, I give my email to Hubby and tell Mrs. Gal that I am doing so, so that we can keep in touch. Please keep in touch.
All goes well and as I am leaving
Mrs. Gal and Hubby are also leaving.
Hubby tells me that he has been reading about me.
Huh?
Yes, reading about me since June, but didn’t recognize me cuz my hair has been growing back.
Since June?
Huh?
Yes, he had read my Geeklist posting on BoardgameGeek (cuz boardgaming is my “passion”).
Wow – how Awesome! I felt A Mile High on That one!
And they left. I think her name was Elizabeth, but I didn’t ask his. Wish I knew.
Y’all out there?
I’ve had an “abnormal” amount of muscle aches and joint/bone pain lately.
The normal side effects of the meds I’m taking
is abnormal muscle aches and joint/bone pain
and I have been having an abnormal amount of abnormal
especially in the area of the osteoblastic lesions
I’m scared
abnormally.
Tags: aches and pain
Got my 5th Zometa infusion yesterday, Mom was with me.
Number 1 was at Burzynski Clinic. It hit me hard…
Number 2 was at North Cypress Ambulatory Infusion Clinic. Thank goodness the 2nd infusion was not that bad…
Number 3 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad!
Number 4 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad!
And, again, Number 5 was at North Cypress Ambulatory Infusion Clinic, again – wasn’t bad.
This time I did NOT look at the infusion needle – since it kinda freaked me out last time.
I cried a little bit… again. Just so tired of this all.
I also had the blood drawn for my monthly lab work, my tumor markers… Should get those results early next week. HOPING they continue to show improvement!
The TOTAL of my charges – receiving the Zometa, compounding the Zometa for infusion, infusion procedure utilizing my port AND the necessary bloodwork to access my levels and tumor markers was $320.00. Plus $15 each for the 5 blood tests.
Thanks to North Cypress Medical Center, Ambulatory Infusion Therapy Center Nurses for their kindness!
After the infusion, Mom and I ran to Sam’s for a brief shopping, but then home cuz I wasn’t feeling well.
When we got home, I went to bed cuz I was achy. I didn’t sleep too well, had another weird dream and my joints and muscles are hurting.
Mom took photos at the infusion, I’ll get them posted later.
To overview:
ZOMETA is (also) used to treat patients with other cancers—including breast‚ lung and prostate cancer—that have spread to the bones‚ a process called bone metastasis. When cancer has spread to the bone‚ treatment with ZOMETA helps to protect bones and may reduce or delay such complications as:
* Bone fracture
* Need for radiation and/or surgery to bone
* Spinal cord compression
Having my 5th Zometa infusion later today, around 2pm… Mom is driving in and going with – Yay!
According to the info and past experience, the side effects should be minimal, not like the first one…
