Monday, March 30, 2009

PLEASE Read This One :)

Please - yes I'm begging - read this post and pass it on to every single person you know. Awareness and information are our key weapons in battling every thing we come up against in our lives, and this topic is no different, but the consequences of NOT becoming aware and informed can be devastating.

I while back I was asked to write a guest post on Inflammatory Breast Cancer (IBC) for Seeking His Face.......In Everything. I jumped at the chance to put some information out there for whomever might be interested, and immediately agreed. Little did I know at that time I would, within a matter of just a couple of weeks, be facing yet another raging battle with this disease. I was suffering from what my doctors said was a respiratory infection and left ear infection. The respiratory infection cleared up in short order, but my ear got worse. It never hurt like you would expect from an infection, I just lost my hearing and had a lot of pressure. After about a week I started the difficult and emotional journey of reliving some of what I've been through in the past 6 years. It took me a while to put together in a coherent way because it WAS hard to look back and I wasn't focusing very well mentally.

I finally finished and will be providing the links here so you can read My Story and get a better feel for what IBC is and isn't. PLEASE keep this information and the links somewhere close by so you can share it with everyone!! This is not just another breast cancer - there is no rhyme or reason, it afflicts very young and very old, men and women. PLEASE keep it in your heart <3

If you've been keeping up with the last two weeks here, you know I've been having daily radiation to my base of my skull for a bone tumor that is compressing the cranial nerve. I currently have a near complete loss of facial muscle skill in the left side from crown to jaw. What a sight I am LOL Rads finish on Wednesday and then we wait a month for everything to work and see what's left of the tumor. In the meantime, I'm learning to eat without chewing up my tongue and drippling oatmeal down my shirt.

Here's my last plea to you (today hehe) PLEASE go to this blog and read the series of posts on IBC. Make yourself awareness and find the information that may help you save your life or the life of someone you care about. I love you all and lift you up to The Lord in prayer for health and peace, and the courage and faith to stand with your loved ones if ever you are faced with this disease.

Now, go on, read it!! xoxo

Part 1

Part 2

Part 3

Saturday, March 28, 2009

A Weekend Rest

I have the weekend off from radiation, it's nice to just relax a little, especially with the trying driving conditions that past couple of days. Wednesday and Thursday were very tough days, lots of extreme pain throughout my face and migraine-level pain in my left eye and temple. The doctor thinks it may have been some 'scatter radiation' that hit a few nerves, but who really knows. It's gone now except for some irritating eye watering and I'm definitely feeling the better side of good today :)

My tongue feels like a rock slab in my mouth and that's been a little tricky. My speech is pretty slow and slurry and get worse as the day goes on. I am trying to eat more than cream of wheat, though, even though it takes a long while - I'm hungry for FOOD! LOL

Sami has really stepped up and is helping out a lot with keeping piles of "stuff" from growing around the house, cooking dinner and cleaning up the kitchen. She did a few loads of laundry for me so I had warm comfy clothes and has been pretty attentive to how I'm feeling. Britni withdrew a little earlier in the week but we had a nice chat and I think she's somewhat reassured and understanding the skull is different than the brain and although it is serious and needs to be taken care of, it is certainly manageable. Both girls are back to school next week so hopefully that will give them a little distraction. I finish radiation on Wednesday, will have an MRI in a month to gauge overall effectiveness, and if necessary, a few pointed rads after that. Not sure when chemo will start, this discussion will take place on April 7th with my regular oncologist.

All in all, the weekend should be good, some time hanging with the girlies, no where to rush off to and be zapped about the head ;) watching the puppies play and the snow melt. Life really is a daily blessing! Thank you Lord for another beautiful one!

In His Hands,

Monday, March 23, 2009

Phase I Underway

This may be short, may not, you know how I sometimes ramble!

After having an MRI on Saturday morning, I was caught up in a whirlwind of activity, lots of things happened in a short period of time. I had the MRI at 9:30am, the oncologist called at noon, said the mass was bone metastasis to the skull (parietal bone) and the tumor was compressing the fifth cranial nerve, which is causing my facial paralysis on the left side. She wanted me to start radiation therapy immediately and said when we hung up she would be calling the radiology oncologist on call. She called me back about 20 minutes later, said Radio-Onc would be calling me within the hour. Sure enough, right about 1pm she called, wanted me to pick up a prescription of Decadron (steroids) to help reduce the inflammation and hopefully take pressure off the nerve to minimize damage to my facial nerves, and head down to the hospital where she would meet me at 2:30!! She opened the Radiation Oncology just for me LOL

I spent a couple of hours there getting set up for my first set of rads (focal radiation aimed directly at the tumor). Since this turned out to be an "emergency" session we did thinks kind of backwards but worked it out in the end. I went back on Sunday for another round, and again today to get things in order the way they would have been had I gone about this in a normal way haha So I'm all set up properly now and have 7 more sessions (Tuesday-Friday this week and Monday-Wednesday next week). I'll continue with the steroids for a month and then have another MRI. The docs wait a month after rads are complete to check because radiation continues to break down and destroy the tumor for some time after treatment stops, and we also want to make sure the steroids can reduce all the inflammation so we get the best possible pictures of what's left in there.

I'm a bit tired and have been sneaking 15 and 20 minute power naps where I can. I take a Decadron every 6 hours so just about the time I'm ready to fall into a restful sleep I pop up like a poptart out of a toaster! I'll probably have to bite the bullet and take a sleeping pill to counteract the steroid so I can get the rest I need to work through radiation, which can make you bone-tired starting at about 7-8 days out from the beginning of treatment.

I'm also going to shave my head again since my hair will fall out where I am receiving radiation, so I'm thinking my next "happy dance" blog will be a showcase of all my hairstyles, and lack thereof, throughout the years - won't that be fun!!!

Okay, as always, here's my upside and blessing: the tumor is a BONE met, not a BRAIN met YIPPEE SKIPPIE I'm thrilled and so very thankful for God's mercy!!! There is not indication of cancer spreading into the brain or outlying brain tissue. Praise The Lord! Now you know why I call this blog My Blessed Life :)

Thanks for keeping up with me and I give you my unending thanks for your prayers! Will update as things come along. In the meantime, I'll find something fun to add here to lighten and brighten your day.

May God Always Bless You Abundantly

Saturday, March 21, 2009

A "Virtual" Friend

I met a wonderfully kind woman on Facebook a few months ago, and she posted this on my wall today and I wanted to share it because it is a very timely message.









"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Friday, March 20, 2009

Don't Worry....Be Happy!

I have an itchin' to write something but I don't know what! I don't feel like writing anymore depressing health news, it's been fairly quiet around the homefront, and I haven't done a single noteworthy thing all week. What to write.....well, I feel like the Lord is urging me so let me just see what comes off the keyboard.

I have a wonderful, beautiful, loving cousin in Oregon. She has a heart for God and His children that is strong and true. And I love her dearly. I don't get to see her very often, in fact, the last time was a couple of years ago. She came out to Colorado for a week to help me put my house in order. Can you even imagine that?! She flew out here to unclutter and reorganize me so I would have a happy place in my home. I called her this morning to update her on my latest bump in the road and here is what really keeps me going:

My cousin was a little weepy at times as we talked. I know and understand her fears, I have them, too, but I can't allow them any playtime in my life. So I told her--I don't know why I have this disease and of course, I don't know how it's going to play out in the end. But what I do know, and I mean what I do know, is that anyone who looks at me must understand that I do not possess the strength or the will to live through this...but GOD does! If one person - just one - has their heart changed because I told them GOD holds me and gives me every single thing I need, then He is glorified and someone is saved...and that makes it worth it. That keeps me going - the strength of my Lord, the glory of my God, the grace I don't deserve that my Father gives me anyway. I am not amazing, but GOD is!

Don't cry for me, and try not to worry too much. Instead, say a prayer and give yourself over to your Father for care and guidance. Remember, we didn't always like what our earthly parents had to say or made us do, likewise with our Heavenly Father. But in His case, He really does know best ;-)

I give myself up to The Lord My God and place my heart and soul in His hands for safekeeping, forever and ever. I pray the same for you.

Much love and abundant blessings,

Thursday, March 19, 2009

Some Quick News

I spent 3-1/2 hours in the E.R. today because of this stupid ear infection. I'm sure the infection is gone but I still can't hear and the numbness in my face is driving me batty! Anyway, good news is there is no infection; bad news is there is a mass on the parietal bone compressing the nerves - that's what causing hearing loss and facial paralysis. I'm having an MRI tomorrow to get a better look at it. The ER doc talked with my oncologist and they agree that it is most likely breast cancer mets. Unfortunately, chemo won't pass through the blood brain barrier so I'm looking at some kind of brain radiation. Update after I see the doc tomorrow. Please pray!

It's in God's hands and so am I!!!

~Sandie xoxo

Monday, March 16, 2009

When Is A Test Result Not a Test Result?

When it doesn't tell you anything!

All my lab tests are back and there is really nothing we can tell from the results. Usually my white counts are very low, red counts are good and strong, potassium dips into the low area because of my high blood pressure medicine. Everything else is normal. HA This month my white counts are up (ear infection that is now starting to make my face numb), red counts are way way down (now I have to have an blood iron study done), potassium is normal (I take a prescription supplement) but my sodium is low (what????). And to top it off, my tumor markers dropped 30 points despite the scan evidence of further progression. What the heck is going on?!!

I have stopped taking all medication except high blood pressure and potassium tabs. Since I get a month to 'clear' my system before the next round of tests, I'm going to take an herbal supplement I've been reading about. MD Anderson, which is a HUGE hospital that routinely does clinical trials on cancer medications, is currently running a trial on Curcumin, a component of the spice tumeric. They are seeing some success with curcumin in all phases of cancer activity. I picked up a bottle at Sprouts of the same strength they are using in the trial. Another benefit is that curcumin has anti-inflammatory properties and is used to help relieve arthritic pain. So I'm thinking - it's really just a spice and there are no known side effects - why not try it?

Now about this ear infection...I took a full course of antibiotics and it got worse! I know most ear infections are viral and antibiotics don't really do anything, but they usually clear up after a week or so, right? Well, it's been over 2 weeks now and I'm starting to get facial numbness - like when you get a novacaine shot from the dentist. I'm going to try to get an appointment with an ENT this week and find out what is really going on in there. It's bad enough I can't hear, but the left side of my tongue, lip, chin, and lower jaw are all numb now and that is *really* annoying.

And finally, to make this week extra-special, since I stopped taking the estrogen blockers, it appears that menopause is taking a vacation and throwing me back into the land of monthly cycles and PMS. Ugh could this get any worse?!!

I've off to steal a box of Stayfree and a handful of Midol from my daughter :p

Friday, March 6, 2009

A Girl and Her Dog

No narrative necessary xoxo

Our New Addition

We got a new puppy yesterday! She's a 10-month old blond long-haired chihuahua named Honey. I'm fairly certain she's not a purebred, and not a clue what she might be mixed with, but she is an absolute love of a puppy! Why a new puppy, you might ask. Well, allow me to elaborate ;)

My girls have basically grown up with dogs. I had a Gordon Setter before they were born, and quickly realized it was either the BIG dog who loved to JUMP up on you or the tiny little toddlers...I chose the toddlers! So the dog was given to a very nice lady who had a ranch outside Phoenix (where we were living at the time) and presumably lived a happy life out there running and romping with a couple of other dogs and assorted other animals. Shortly thereafter, we just happened by the Humane Society and decided to "look" at what they had for adoption so we could "think about it." Yeah, so it didn't exactly work out that way - we left with adoption papers for 2, yes 2, doberman/rottweiler pups. They weren't old enough yet for us to take them home, we had to wait about a month. Very sad story about those pups - someone just dropped a litter of 8 pups at the door and walked away! Ugh I can't believe the way some people treat animals! The girls were about 3-4 years old then and picked out the puppies they wanted. Of course, they couldn't agree even back then, and that's how we ended up with two hehe. We had those doggies for 10 years and loved them dearly but they were more than a handful. One was predominately Doberman and very active - she needed lots of space to run and play. The other one was more Rottweiler (bulkier) and very lazy LOL. My backyard is a center cul-de-sac lot so probably measures out at about 1/2 acre - plenty of room for two big dogs. Ah, but they need more than a backyard to get the proper exercise. When I got sick, it became increasingly difficult for me to take care of them properly and they were too much for the girls to handle alone. I finally had to make the very difficult and heart-wrenching decision to give them up. I surrendered them to a Doberman Rescue Center since they were older dogs and had a slim chance of being adopted out of the Humane Society. And given the fact they were litter mates and spent their entire lives together, I really wanted them to stay together.

Now the girls had other pets along the way. We did the whole rodent thing, more than once - hamsters, guinea pigs that multiplied like spring rabbits - also our fair share of fish, salamanders, and newts. Enough! The dying off of small animals occurs on a fairly regular basis and is heart-breaking every time. The guinea pigs were the worst - they lived an average of 4 years (probably because they kept having so many babies they wore themselves out!) and every time it was a horrible scenario with the girls. Britni had an especially difficult time letting go of her pets and with the passing of each little pig a piece of heart went with it. So what did I do - I gave away her dog! Of course, I had talked to her at length before doing so, and she assured me she completely understood why we needed to do it, how much better it was for the dogs to be somewhere they would be properly cared for, yada yada yada. Well, just a week ago it occurred to me that this was probably the real start of her slide into depression. She loved that dog more than life itself. Yes, I got another dog right away but it was a rescue from a puppy mill and we'll never really know what mistreatments he suffered through there. He's a little Corgi/Chihuahua mix and I thought he would be a great lap dog for Britni and give her something to focus her love on and lessen the pain of having her beloved Twinkle sent away. Wrong again! Britni loves this little dog (Eddie) to pieces but he's never warmed up to her and doesn't let her love up on him. What to do, what to do. Enter my my cousin, the OR Scrub Nurse.....

Cousin has had a MinPin for about 7 years and thought now that she was a fully licensed nurse and working 12-hour shifts it would be nice for her little gal to have a playmate to keep her company. By coincidence, her sis meets a couple who have a puppy they need to give away (they're living in their car with the mom dog and the puppy!!). Cousin takes one look and snaps her up - she'll be the perfect companion for the sweet little doggie she has at home. Uh, not so much. The one at home is dominant and jealous. After several months of trying to help the dogs adjust to each other, it's obvious it just isn't going to work. About this time I'm realizing my precious Britni is needing something special and "losing" her Twinkle made her literally lose her twinkle. Finally, I think I got it right! When Britni got home from school yesterday and saw Honey and I told her that Honey was for her, she scooped her up and said "Thank you Mommy, I love you Mommy, I'm so happy!" That kid grinned from ear to ear all night, didn't hide out in her bedroom cave AT ALL the entire evening, and was genuinely happier than I've seen her in many months.

My camera battery was dead last night, of course, but I'll get pics today and post them a bit later. The one here of Honey I snapped earlier today, but to see the real joy in my baby girl's face you'll have to wait a little while - check back in a couple hours and experience the profound effect 6 pounds of puppy has had on my daughter! My heart is bursting with happiness and I dare say, so is Britni's!!

Love & Blessings,

Doctor, Doctor - Give Me The News....

I went to the doctor for my regular monthly follow-up a couple of weeks ago, and based on some on-going pain issues with muscle cramping and generally not feeling well, he ordered a PET/CT scan, which I had last Thursday. I always have blood work done at these monthly visits: a CBC which measure red and white blood cell components, a chem panel which measures level of everything else in the blood (vitamins, sugar, minerals, etc.), and a CA 27-29 which is a specific test to measure enzymes in the blood formed from active breast cancer (referred to as a tumor marker test). A tumor marker test by itself is really of no value, but combined with other tests can be a good indicator of cancer activity. A normal 27-29 is 0-40, at the high point mine was somewhere near 500, but generally rests between 160 and 180. I have been steadily increasing over the past year and now sit at about 270. My markers have been going up slowly so we've been using hormonal therapy (not HRT) to shut down estrogen production. There are several different oral drugs available for this protocol, and as of now I have used them all LOL. Unfortunately, they have now all failed and I've exhausted that course of treatment.

Let me back up a little...breast cancer is either estrogen positive or negative, progesterone positive or negative, and HER2Neu positive or negative (this is another hormone). My cancer is estrogen and progesterone positive, HER2 negative. This means the cancer feeds on estrogen and it is critical to halt estrogen production in order to slow the growth of the cancer. My initial chemotherapy threw me into menopause (at 41!!) and I've stayed there, so I was able to take post-menopausal estrogen inhibitors to reduce whatever estrogen was being produced by the pituitary glands and wherever else might be still produced elsewhere. Anyway, after going through all the different variances of inhibitors, I reached the end of the list. That happens when the cancer continues to metastasize while you are on hormone therapy - if the cancer is spreading the meds aren't working. Hopefully that makes sense enough in why this is a treatment option after chemo. How long hormone therapy works and which ones works varies so much from person to person it's impossible to know how long one can stay on this treatment and how effective it will be for any given length of time. Now you have some background, back to the test results....

So I saw the doctor yesterday, and the PET scan showed some growth of bone mets (mets = metastasis = spreading) again in the sacrum (base of the spine) and iliac (pelvic bone), which had previously been treated with radiation, but they're back . Explains my back pain, anyway! Also increased mets to the lung pleura (this is the area between the chest wall and the lung that allows the lung to expand and take in oxygen). The cancer spread to the pleura back in 2005 and I went through several procedures, including 2 surgeries, to close off the pleura so the cancer wouldn't break through into the lung itself or other surrounding tissue. It has stayed contained but continues to grow within the pleura. Anyway, radiation and surgery scarred and damaged my lung so the right side operated at about 40%. A couple of new spots showed up behind the bladder but we're not convinced this is cancer. The scan report identifies them as polyps and I'm inclined to agree based on all my other tests so far. I have a PET scan every 3-4 months so we'll see what shows up on the next one.

Overall, this is much better news than I was expecting. I have been feeling very poorly for the past month or so, and have an increase in body cramping and pain. Now I'm not talking about a little cramp that you can rub out - I get cramps so sudden and severe in my feet, ankles, legs, hands, ribcage, and back that I cannot stand, speak, or breath! My hand cramps up now just brushing my teeth! Last month's chem panel showed a low level of potassium so I'm on prescription level supplements to bring that up and hopefully relieve some of the more severe cramping. I've been through a lot and have a VERY high tolerance for pain, but I gotta tell ya, I was in tears at 2:30 this morning with these cramps :(

Oh, almost forgot - I have a bronchial infection and ear infection - OMGosh - I thought ear infections were for kids!!!

I had another set of blood tests yesterday and based on those results (which I should have on Tuesday) I have a couple of options, and I will be praying for guidance over the next several days:

1. Do nothing. Continue taking potassium but stop hormonal therapy. Rescan in 3 months and see what's happening.
2. Radiate bone mets to relieve pain, and do nothing (see 1. above lol). This really isn't an option I'm considering, the pain from the mets isn't that bad and isn't constant. Very tolerable compared to effects of radiation.
3. Start chemo now, rescan in 3 months to evaluate.

Here are my initial thoughts: if my 27-29 comes back considerably higher, i.e., a bigger jump than I've had in the last 6 months, then let's start chemo now. If 27-29 is stable or increasing just 10-15 points, let's wait until my infections are cleared up - maybe start in a month or 2. Ideally, I'd like to wait until the girls are out of school so I don't have the added stress of getting Sami to school 16 miles north, then down to the hospital from there - 35 miles south, having a 2.5 hours chemo session, and getting back to pick her up on time. Even though it would be only once a week, it makes for a very difficult day. I guess what I'm thinking then is I would like a break from all things cancer for a couple of months! We'll see what comes back from the lab and go from there. I'm pretty much prepared for what comes and already had this working in the back of head because the doc and I have talked about it during my appointments since November. We knew it was coming at some point so I've been working hard to get the house in order and the freezer stocked with cooked meals so I was ready and I'm almost there (hmmm maybe that's the real reason I want a couple of months lol).

So that's it - another twist in the road, but not a blind turn so I'm okay with it. The good news is that at 5+ years out from initial treatment I still have absolutely no mets to my organs and that bodes well for me and speaks volumes for my doctor's knowledge and attentiveness in keeping this nasty little thing tightly wrapped. Kidneys, liver, lungs, brain - they're all functioning well (okay so my brain doesn't *always* work that way it should!) and completely clear of cancer.

I need to rest my hands for a while, but I'll be back with a happy-happy post later - we got a new puppy yesterday!

Love and Blessings,

Wednesday, March 4, 2009

I Usually Don't Rant..But....

I can't help myself this time!

I like to think I'm pretty easy-going, don't really get terribly upset over too much. Life is just too short to spend it angry and frustrated. Either fix the problem or let it go. Unfortunately, sometimes it doesn't work out as easily as that. I believe there are somewhere in the neighborhood of 40 states that conduct Standardized Achievement testing during the school year. Colorado is one of those states (CSAP testing occurs right before spring break, lasts 2 weeks). I don't believe in standardized testing in general - who in their right mind thinks every kid in the state fits in ONE standard?! More specifically, I don't believe a singular set of tests can or does accurately show or predict how a student is learning. I'm a proponent of show me what you learned and how you will use it. My basic problem with standardized testing is just that - it assumes a standard that every kid should fit in, but of course we know that will just never happen.

Sami is not taking CSAPs at her school - they have a special waiver to opt out all the students and instead use a teaching methodology that provides accountability to academic success, but at the same time prepares the student for success in high school and builds a stronger desire to pursue a college education. Why do we need to a have a specially-designated school (in this case, the district calls this school an Alternative Education Campus) to give our kids what they should be getting in every single school that serves the population? I applaud Boulder County for recognizing the need for a school like this and providing a stop-gap for students that are at a higher risk of dropping out or ending up in the juvenile system for truancy and the related offenses that often seem to accompany a student who habitually skips school - getting into trouble that escalates into serious lapses in judgment and a closer-than-comfortable relationship with the local Police Department.

On Monday when CSAPs started, I read several articles about how Denver Public Schools were out-and-out bribing students to attend school during the CSAP testing window. The bribes ranges from cold hard cash to drawings for flatscreen TVs, X-Box consoles, etc. That's when I started a slow boil over this whole mess. I am thoroughly and completely disgusted. I read the No Child Left Behind legislation and the mandate for standardized testing, and as far as I can tell, the ONLY benefits go to the school district - what's really in it for the students? What do our children gain from 2 weeks of grueling testing, pressured by staff and administrators to attend testing days, weeks prior spent NOT on academic success but teaching for CSAP success? I can tell you from looking at my 13 year old daughter - high stress to the point of throwing up yesterday, diarrhea last night, and tears at the thought of going to school this morning. Britni knows my point of view on testing and she knows that I don't even look at the results, they are meaningless and have no relevance. Even knowing that, the pressure she is feeling is so tremendous she is literally making herself sick.

When we have to issue high dollar bribes to gain participation, something is seriously wrong with our educational process. When did the school become more about ratings and scores than giving our babies a solid foundation for life-long learning? I said earlier, fix the problem or let it go - I'm going to do both. I will be opting Britni out of testing and not look back. We're done.