To The Edge And Back....

I've been meaning to post for weeks now and just as soon as I decided to do it, I got sick again. So here is what's been happening in my special corner of the world!

A week after my spa day with Sami, I developed a wicked case of lyphedema (basically, lymph fluid accumulating in my right arm) and my arm puffed up to twice its size in some places. That kept me off the keyboard for a couple weeks! That was followed by the worst itcy rash I have ever had in my life, and nothing would relief it. That has come and gone over the past couple of months and we're not really sure what it is. It doesn't appear to be anything dangerous but it is extremely uncomfortable and at its worst I have to resort to pain pills. So that finished up April.

Moving into May, I came down with a cough that was starting to keep me up at night. I started chemo on 5/5 so I mentioned it to the doctor then but he didn't seem to think it was much of anything. So I had chemo and went home to bed. The following week I went in for chemo but was so sick I could hardly get out of bed. This time the doctor gave me a prescription for antibiotics, skipped chemo, and sent me home again. One more week and I was back for chemo, cough was better but I was dehydrated. At least I thought that was all that was wrong....turns out I had a bacterial lung infection that turned into pneumonia. Off to the hospital I went, right then and there. I ended up taking in 7 bags of fluid over 24 hours, 3 bags of potassium, and a couple of bags of magnesium. I stayed in the hospital for 3 days until I felt safe going home without fear of relapse. Then I celebrated my birthday with my beautiful children. That takes care of May and the closest I've ever felt to death.

I started this update back on June 23 so I think it's about time I posted it now that I'm at a good stopping point! My many escapades in June and July will be coming up after this brief message from our sponsors....

Escape Uptown

I finally made it back to post about the wonderful day Sami and I had last Saturday. I treated her to a mini-spa day of sorts. I even managed to get some pictures! Since it's taken me so long to post this, let's not waste any more time - follow me to Escape Uptown and my fabulous stylist Stephanie as she treats my eldest daughter like a Queen for an Afternoon :)

We had an appointment at 11am Saturday morning, and we arrived a little early, Starbucks in hand, anxious to get started. Sami was started off with a new hair color. Fortunately, she already knew what she wanted and was able to quickly select a combination that turned out to be such a perfect match for her skin tone it was as if she was born with it! Color on!



After the color, it was time for shaping up her cut and thinning out her hair. Sami has very thick hair and it is very wavy/curly. She spends a couple of hours straightening it daily (why is beyond me!) so she wanted a good thinning to add some texture and reduce the time she spends on her hair every morning. The cut is beautiful!

Next, we both went in for a parafin manicure. Sami has never had a manicure and I've never had a fancy one so this was fun. You get your hands put into plastic bags with melted parafin max then wrapped in cotton mitts while the wax mositurizes your hands. The parafin bags just slide right off - it's a bit odd but it was a fun, silly thing I'm glad we did.

Finally, Sami wanted to try a tanning bed. Unfortunately, she had read up the night before about the dangers of tanning beds and kind of freaked herself out once she was actually in the tanning room. The noise of the bed, the somewhat enclosed space, and her gigantic fear that the bed was going to start on fire sort of ruined it for her LOL We're back to Jergens Self-Tanning Lotion!

At the end of our outing, I dropped her off at boyfriend's house - you can see by the smile here that the day was a success! A radiant beauty!

Oh yeah I almost forgot - my hair finally fell out where I had radiation so while Stephanie was waiting for the color to work it's magic on Sami I had her shave my head ...... I gotta say it feels better :)

Moving On.....

Hopefully this will be my last post for a while on this phase of my journey with IBC. I say that only because I make a point of not letting cancer define me and I never want it to be all-consuming of my daily life and activities. So that said, here's the plan for moving on :)

MRI/CT scans on April 27 to check radiation effectiveness, any tumor left, extent of sternum mets, etc. Barring any surprises, start weekly chemotherapy infusion of Avastin and Gemzar (about 2 hours once a week) on May 7. This will be ongoing indefinitely. I've done this combination before and it's not too rough.

Plan in place ~ time to get back to my fun life LOL

Watch out later today for a REALLY FUN post of my day today (or maybe tomorrow depending on my energy level later) ~~ I just can't wait - it all starts in an hour WOOHOO Don't forget to come back you won't want to miss it <3

Rad Grad Day!

Today is my celebration day *happy day* I finished radiation treatment this morning, had a check through by my oncologist, and will now have a month of "down-time" to let the radiation do it's thing. I'm starting to feel a lot more of the effects this afternoon - my head feels deeply sunburned and sore, my hair is starting to dry out some and my scalp is itchy around the radiation areas. My bones are hurting and I don't have much stamina. All that said, I just wanted to pop on and thank everyone for the uplifting prayers and special love you have sent me over the past two weeks and let you know I got through it, and tomorrow I'm hanging out in my PJs and doing some clean-up work on my laptops which have been crashing left and right hehe.

I don't know what my future holds, but I know who holds my future!

In His Hands,
~Sandie

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 http://seekinghisface2.blogspot.com/2009/02/monday-medical-awareness-inflammatory.html

Part 2 http://seekinghisface2.blogspot.com/2009/03/monday-medical-awareness-inflammatory_24.html

Part 3 http://seekinghisface2.blogspot.com/2009/03/monday-medical-awareness-inflammatory_4718.html

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,
~Sandie

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
~S

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.

TWO FRIENDS WERE WALKING THROUGH THE DESERT . DURING SOME POINT OF THE JOURNEY, THEY HAD AN ARGUMENT; AND ONE FRIEND SLAPPED THE OTHER ONE IN THE FACE

THE ONE WHO GOT SLAPPED WAS HURT, BUT WITHOUT SAYING ANYTHING, WROTE IN THE SAND, TODAY MY BEST FRIEND SLAPPED ME IN THE FACE ..

THEY KEPT ON WALKING UNTIL THEY FOUND AN OASIS WHERE THEY DECIDED TO TAKE A BATH .

THE ONE WHO HAD BEEN SLAPPED GOT STUCK IN THE MIRE AND STARTED DROWNING, BUT THE FRIEND SAVED HIM.

AFTER HE RECOVERED FROM THE NEAR DROWNING, HE WROTE ON A STONE:
"TODAY MY BEST FRIEND SAVED MY LIFE"

THE FRIEND WHO HAD SLAPPED AND SAVED HIS BEST FRIEND ASKED HIM, "AFTER I HURT YOU, YOU WROTE IN THE SAND AND NOW, YOU WRITE ON A STONE, WHY?"

THE FRIEND REPLIED "WHEN SOMEONE HURTS US WE SHOULD WRITE IT DOWN
IN SAND, WHERE WINDS OF FORGIVENESS CAN ERASE IT AWAY. BUT, WHEN SOMEONE DOES SOMETHING GOOD FOR US, WE MUST ENGRAVE IT IN STONE
WHERE NO WIND CAN EVER ERASE IT"

LEARN TO WRITE YOUR HURTS IN THE SAND AND TO CARVE YOUR BENEFITS IN STONE.

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

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,
~Sandie

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

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

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,
~Sandie

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,
~Sandie

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.

Yes!! It's Friday!!

I think I'm finally getting over the respiratory yuck, just a lingering cough now, although it feels as if I will cough up a lung at any moment (a la Ferris Buehler)! Needless to say, I didn't make any progress on my big Spring Cleaning plan but there's always next week, right?

I am working on a new plan with Britni to help her get organized and focused. We chose one area per week to work on every day for that week. This past week it was keeping her school papers in her binder, not wrinkled up and shoved into the bottom of her backpack and randomly left in a textbook. We started by culling her binder of last semester's papers and put those into a folder for use studying for finals at the end of the year. Then we put reinforcements on her divider tabs so they were actually IN the binder and not hanging out all over the place! She has done really well keeping her papers neat and remembering to take - literally - one minute to put her papers in order before moving on to the next class. She was even able to move from a backpack to a shoulder tote for school, and she is really happy about that!

Sami finishes up this block in 2 weeks, then has 2 weeks off. Her mid-term progress report was great and she seems to be in a good, healthy routine now. Today she had a field trip to the Contemporary Art Museum and really enjoyed that, so much so that she wants to go back next weekend and really spend some time enjoying the art. Yay!

I'm going to try to get back into the Spring Fling this weekend. I'll post my progress - I'm *sure* there will be some lol

xoxo

Ahh Monday Morning

After a challenging weekend, I am enjoying an early Monday morning. I had been moving right along with decluttering, spring cleaning, and generally sprucing up our home when I suddenly and quite unexpectedly experienced pain I can't even describe throughout my entire body and a fatigue so deep I could barely make it to bed. To top it off, I must have caught something one of the girls has had over the past few weeks - horrible sore throat and deep respiratory cough. I guess I should have known taking care of sick kids would eventually catch up with me. I've been down for two days, but today am feeling much better, although I cautiously put myself at about 65% so I will be taking it easy for another day or two. Britni is off school today so we're going to spend some time fun time together - if that doesn't help me feel better, what can?!!

Have a blessed Monday my friends!

Spring Cleaning - Kitchen Part I

I am so happy with my kitchen today! Yesterday I started a Spring Cleaning Challenge with Crystal at Biblical Womanhood. Although she's a few steps ahead of me, I didn't use that as an excuse not to jump in and join the fun! My plan is to work on the current weekly challenge Crystal has posted, and then - time and energy permitting - work backwards to cover the areas I missed. If that doesn't work, I'll just add them on at the end :) I don't have actual "before" pictures of my main kitchen area to post, but I do have some beautiful "after" pictures that I will put up as soon as I locate the USB cord for my camera. I have some pics of the kitchen from late last summer after a particularly difficult period of fatigue and constant bone pain that created a nightmare in my routines. I decided to fight back and not let the random set-backs keep me from having peace in my home. I think it would be unfair to post those horrendous pictures because that's not really where my kitchen started this time LOL I have been steadily working on decluttering and clearing space in the kitchen since November and made considerable progress before taking up this challenge. That said, I *did* take pictures of the inside of the refridgerator and freezer yesterday and have started flinging the nonsense. I hope to finish this project today and have another progress report this evening! I'm off to find my USB cord - will return shortly with shiny pictures!

My Shiny Fridge



















Main Kitchen Area




























and My Shiny Sink!

Quick Update

Found a beautiful blogsite doing a challenge with Spring Cleaning For Normal People! God is so good! Crystal at Biblical Womanhood is using the book and breaking it down into weekly challenges. This is exactly the help I need to stay on track. Of course, they're a few weeks into it, but I'm not behind! I'm just going to jump in where I am and work toward my goals (sometimes the flywashing sneaks up on you when you least expect it!).

Spring Cleaning Starts Now

Seems like I may have to start back on chemotherapy in the near future, the very near future, so I've decided to pull together three awesome resources I have and do my Spring Cleaning now. This will be an adventure to see if I can 1) stick with it as I am a notorious procrastinator and get bored quickly and 2) if I can apply the house-cleaning principles I'm about to use to my finances so everything is in order in case someone else needs to pay a few bills.

I'll give you a quick overview of my plan, then I'm going to update my Control Journal and write out - on paper - this plan!

I've been a fluttering follower of FlyLady since the summer of 2000. I love her principles and no-nonsense approach to keeping the home under control. I recently won a blog contest at Organize With Sandy Reviews for an e-course in home organizing from Take Charge Solutions...guess what? Very similar to FlyLady! The e-course recommends a Control Journal, 15-minute sessions, one area at a time. Woohoo these two things definitely belong together. Finally, today as I was Twitter-clicking I ran across a wonderful blog called SimpleMom and downloaded (for just $7) an e-book called Spring Cleaning For Normal People. Guess what? Very similar to FlyLady again! Each one of these methodologies has a little different perspective and a little different approach, but all three incorporate the same basic premise - declutter, stay on top of the piles, don't bring anything in without already having a place for it, once you decide something has to go - get rid of it immediately.

So even though it's only February, my Spring is shaping up to be a little busy and challenging, so I'm off to find my duster and get started NOW! I'll keep you posted, might even add a few before and after pics for your entertainment :)

Love and Blessings
~Sandie

My Mind Is A Jumble...

I've started this post over 4 times already ugh I just can't get the right words, and don't have a title yet. Maybe something will come to me if I just start rambling off the stuff that's flying around in my head!

Britni: Last year was Britni's first year in public school after being homeschooled for 7 years and she struggled some with the adjustment. As a result, the district qualified her for special accommodations and she participated in a "learning lab" to help her transition. The idea behind the lab was to give her extra time and support in core subject areas, to increase her organizational skills to meet deadlines, and reduce her test anxiety. In reality, it was a study hall and she didn't really get much out of it. This year I decided not to have her participate, but rather allow her to take some elective classes of interest and work with her at home and in conjunction with her teachers. One really nice thing about the middle schools here is that the teachers work as an actual team and meet weekly to review what's going on with the kids at that grade level. Every 7th grader has the same set of teachers so they always know what's going on with the students. After several meetings with Britni's teachers and conversations with her pediatrician, we have come to the conclusion that she is suffering from moderate-bordering-on-severe depression and general anxiety disorder. Back in December when the doctor and I first starting talking about this, I was clear that medication is a very last option and I would explore other remedies first. At our follow up appointment on Wednesday we agreed that Britni's depression and sleep patterns seem a little worse, but the weight gain seems to have leveled off (about 23 pounds gained in 3 months). So here is the strategy doctor and I have agreed to--Sleepytime tea every night with a minimal dose of melatonin for 30 days with the idea that if Britni can adjust her sleeping patterns so she is sleeping all night without waking (currently wakes 3-4 times every night) she can overcome some of the fatigue that is adding to her depression. I am also seeking a counselor specializing in adolescent challenges and the doctor believes therapy will be a positive component, although she does think it will need to be a long-term commitment. I have invested in a Wii and Wii Fit in conjunction with a permanent change in eating habits at our house. Britni set a very healthy and realistic goal for herself to lose 20 pounds in 6 months; my goal is to initiate a lifestyle change for her that will give her healthy habits and skills to carry with her as an adult. Last night was our first night with tea and melatonin--if she doesn't fall asleep in math class today I'll say we have won a small victory!

Sami: Seems like the worst of our behavioral/legal problems are behind us-hooray! Sami is attending an alternative charter school for at-risk youth that was founded by several members of the justice community here in Boulder County. It's a bit of a drive everyday - 16 miles each way, 25 minutes - but so worth it! She's really doing well and enjoying her classes, no attendance or behavior issues. The school is small, about 250 kids are enrolled but only about 75 attend regularly so she is really getting individual attention and support. I've noticed the biggest differences there are that the staff really take the time to get to know the kids and their backgrounds, show them respect, and treat them as adults instead of delinquent throw-aways. She has a new boyfriend, and although he has had his share of dealings with the juvenile court system, they seem to be a good influence on keeping each other out of trouble and doing what they should be doing. Both of them have consistently completed their court sanctions on time and without complaint, they never miss curfew, and both of them have stayed completely away from the crowd they used to hang out with. I have to say I'm a proud mom right now! Oh, don't think I mentioned before, or maybe I did but it's worth mentioning again, Sami's report card from last term was 5 As and 2 Bs **happy dance**

Hmmm I think I'm going to stop here for now. I'll update on me later, this is getting long :) I think I want to put a separate post and talk some about Inflammatory Breast Cancer and my personal story. It's been on my heart for the last week or so, and even more so today because I was blessed to find a blog post via a twitter search that led me to a woman I tweeted with last night - her blog chronicled her sister's diagnosis and treatment for IBC last year. What I find more and more is that no one really knows what this is, how to have it properly diagnosed, and most importantly, securing an oncologist familiar enough with IBC to treat it in the correct sequence. I've been a little more symptomatic this week and I'm pretty sure that, combined with concern over the girls, is the major cause of my jumble-headed-ness. What better way to sort things out than to write it down?!!

I Won!!

I don't often enter contests and I never play the lottery, in fact, the last time I won anything in a contest was October 1985...I won an all-expenses paid trip to France from a radio station in Phoenix, Arizona. I was planning to go the following summer....but....in April 1986 I got rear-ended - HARD - by a UPS truck and sustained compression fractures in my neck and back and severe damage to my knee. Bye-bye Paris. The prize expired one year from the award date, so by the time I recovered enough to get my doctor's okay to travel it was long gone. I entered other contests and sweepstakes, to no avail, and eventually grew bored and stopped altogether.

Fast-forward to the present - I absolutely **love** all the blog give-aways I'm seeing - who knew there was such a thing?! Since joining Twitter and finding such great tweeps to follow, a whole new world has opened up for me! I have hesitated to enter because I wasn't sure exactly how to follow all the rules and I'm new to blogging so I watched and read for a while, then I entered one. I think I messed up a little but that's ok, it was my jump into the pool of giveaways that are actually things you would want to win!

With one entry under my belt, I decided to try again, and boy I gotta tell ya I was HOT to win this one - an e-course on organizing your home from Take Charge Solutions - something I need Desperately right now! I went to Organizing with Sandy Reviews and entered, feeling pretty sure I did everything right this time. And then...BOOYA...I Won I Won I Won!!! I'm *still* doing The Happy Dance! My first lesson just arrived via e-mail ready for download and action, so that's where I'm heading off to now. I'll keep you posted as I progress, but in the meantime, you really should check out Marcia Francois at Take Charge Solutions and Organizing with Sandy (you can click on Sandy's button on the right) for some awesome giveaways!

TTFN!

p.s. When I'm done with my first lesson, I'm going to enter some more giveaways :)

I Can Let Them Grow Up

It really didn't occur to me 15 years ago when I was holding my first golden-haired baby girl in my arms that she would actually grow up. But she is. And I'm going to be okay, I think.

Samantha Rae turned 15 on Wednesday. She was so excited and so funny on Tuesday. She kept coming in and telling me "I'm going to be 15" "I'll be 15 tomorrow" "I'm almost 15." HA like I didn't know!

I think she had a pretty good day. We have a tradition that the birthday girl gets to have dinner with one friend at the restaurant of their choosing. So Britni and I took Sami and her boyfriend to dinner at International Buffet and had a perfect evening. Tomorrow Sami and I are going shopping for a *complete* outfit - clothes, accessories, the works. I remember browsing the baby and toddler girl clothes (SO cute) and buying like a maniac with a bottomless pit of money. I have learned over the past couple of years that it is futile to try and buy a single piece of clothing for these girls unless they are within arm's reach to approve the purchase. I got tired of taking things back for exchange/refund, so now their birthday gift is a shop-day with mom. Everyone is happy that way - they get what they want (clothes it wouldn't occur to me to buy) and I get what I want (a beautiful day with my daughter). No more unwanted clothes relegated to the back of the closet never to be worn.

Anyway, back to Miss 15....Sami and I have been through a lot in the past 6 months and although I will probably never know all the motivating factors behind her behavior and personal choices, we have managed to talk it through honestly, work on some compromises, and set reasonable expectations. About a month ago, she woke up one day and was more balanced, starting participating more in the family, and conducted herself in the mature manner I have so missed. She reached a turning point somewhere between Thanksgiving and 15.

So what is it about 15? I don't know, and I guess in the whole scheme of things the "what" isn't really important. Something clicked for her and she is showing more willingness to be responsible and accountable. She actually wants to go to school, she wants to get a job, she wants to keep her room picked up, and most importantly right now, she wants to stay away from and out of trouble! She'll be clear of her court sanctions on February 25, and on that day I'm going to take her to get her Learner's Permit and enroll her in driving classes - she's on the path to proving I can trust her and she's working hard to overcome her missteps (you'll notice I *never* say mistakes).

If this is what growing up is, then I can let it happen and it really will be okay. Well, it will be okay until she actually gets in the driver's seat of my car!

For Karen, Friend of My Heart

Today my first born baby girl is 15 (more on that later), and it naturally got me thinking about the day she was born and all the days since then. And I read some tweets from my dear cyber-friend Karen about some mischief her 3 year-old triplets were getting into, and naturally that got me thinking again about my own babies growing up. I'm certainly no expert and my girls are far from perfect, but God put a few things on my heart today for Karen, and probably for me, too, so here it is.

First, what I know to be true is that God doesn't make mistakes. Given that, the children He blesses us with are the children He intended to entrust to us, for better or worse. Not a single one of us will be a perfect parent and not a single one of us will have all the answers all the time. Each child the Lord creates is a unique person that will present us with a unique set of challenges to help us grow into the parent He needs us to be for that child. I suspect He also uses these challenges to help us plant the proper seeds and grow our children to be a delight in His eyes. We can sow, plant, water, weed, and fertilize our gardens of blessing, but sometimes - just like a real garden - we have an occasional wilter or some bugs that sneak in when we're not looking. Would you plow under the whole garden? Of course not! We put on our gloves and do what we have learned through experience works to revive it. And if we don't have that experience yet, well, we're about to get it!

When my girls were toddlers, I was fascinated at the way they went about learning. They explored so many things in so many different ways, the mind of an innocent trying to take in so much. That leads me to the next thing I know to be true: toddlers are natural disasters waiting to happen! No matter how many times I told my kids "no, danger" they just had to find out the hard way. No matter how many things I hid from them, they just had to figure out a way to find them. No matter how many times I scolded them for getting out of bed in the middle of the night, they just had to get up to be sure they weren't missing something important or fun. This is how our children learn! We cannot possible teach them everything ourselves, they need to get out there and learn to learn on their own. Of course, we need to keep them safe and set boundaries, but don't kid yourself and think that just because you say "no" that's the end of it! No is a fantasy word that tricks us into thinking we've resolved the situation, when in fact, we're probably just enticing the child to find out why not. Sounds like learning to me....

I've faced some very severe challenges with my oldest in the past two years, and quite honestly, felt like I had totally failed her and wasn't going to be able to save her from herself. We have weathered smoking cigarettes and marijuana, sneaking out in the middle of the night, running away, drinking, habitual truancy, and constant lying. AND SHE JUST TURNED 15 TODAY!

I have a wonderful church family that I love very much, but there are a few who judge me harshly and don't approve of my parenting. You know what? That's okay. I seek the Lord for guidance and don't need the approval of other moms. Now, I don't mean that in a nasty or haughty way, what I mean is they have a different situation with a different set of challenges and cannot possible know what the Lord intends for us. For whatever reason He chose to bless me with what I have, yes, I said bless! Sami and I are working through her missteps and she is taking many lessons into her heart. And I have had the opportunity to take steps to show her how much I love her and I will never give up on her - no matter how much trouble she causes or gets into, no matter how many times I have to pick her up at the police station, no matter how much money I have to pay in court fees. She is a BLESSING FROM GOD and I embrace her with all my heart and soul.

I understand Sami has to deal with some special situations that other kids don't have - I have incurable cancer and her dad has abandoned her, she struggles to find her place and an outlet for her interests. She is highly intelligent and has little patience, she wants to excel but only in things she's interested in, not necessarily what might be required (hence the issue with truancy earlier this year).

Take a step back and really look at your kids and see the individuals and the special talents they have. We each have a purpose and something different to contribute, but we cannot reach our potential if we are treated exactly the same. My girls are exactly 18 months apart but so very different, and I treat them differently as a result. I don't feel like I'm ever playing favorites, only playing to their strengths and weaknesses, their individual needs and desires. If anyone ever tells you that you are not a worthy parent, remind them that God knows you are. He has never given up on you through all of your missteps, don't give up on Him and His wisdom in blessing you with your beautiful babies.

And finally, prepare yourself - the learning ain't done yet LOL Those babies have little brains that are just waiting to be filled up and want to see, touch, and smell everything in their path, and a few things that aren't. If the worst of your worries right now is cleaning up a trashed bathroom and wiping nail polish off 6 arms, well my friend, cherish those moments because they'll be gone before you know it. Wrap all those arms around you and thank God for choosing you to share in their delight of discovery. xoxo

2 Weeks?! Yikes!

I SO intended to do a better job posting regular tidbits to my blog, even if it was just mundane everyday stuff - but 2 weeks without a post - that's not very regular! I guess I could blame it on "stuff" happening that stole away my time, but the truth is, I just didn't have the motivation to do it. Well, let's catch up....

My test results were not surprising - blood pressure up AGAIN so I'm back on meds for that, tumor markers are up and if they're up again in February I'll have to change cancer meds yet again, I think I have one or two options before having to go back to chemo. I did manage to gain a pound - at least one number is moving in the right direction! I had a couple cycles of migraines and arthritis flair-ups recently, but have been feeling pretty decent for the most part.

Sami went back to school today after a month-long break. While she was home she was able to complete almost all 70 hours of her community service (I think she has less than 20 hours left), and her alcohol aversion class. I'll be so glad to put her missteps behind us! Her report card was stellar - 5 As and 2 Bs. She was very excited to start a new term today and is anxious for new classes. She requested Dance and Yoga, Psychology, and an AP Literature class.

Britni is home sick today, I think it's another anxiety attack. Seems like these are getting worse and more frequent, and I still on the hunt for a good adolescent counselor. I did get a good recommendation from a dear friend and will call today. In the meantime, I've got to run out for more chicken soup and Gatorade for my little sweetie. I've got a few coupons for on-sale items that I will take advantage of while I'm out.

I'm on a major declutter mission in my home this week and will post all about it later today after I get Britni settled and feeling better. I was dreading getting started but now that I have, it's actually been fun and very liberating. Can't wait to share!

Coincidence - I Think Not.....

Haha I was just blogging about how much driving I do back and forth and guess what I just found? A cute little thing called a Console Organizer. It's a purse, it's an organizer, it's a carrier, it's amazing! Let me tell you about it, then you can click the Organizing with Sandy Reviews button on the right, or the Pouchee button, and see it for yourself! Then, you can enter to win one FREE!!!

I envision this for me as a carrier/organizer to hold lab results, valet parking stubs (no other choice but valet park at the hospital), a few small snacks for long chemo days, car keys, cell phone, appointment cards, even a notepad to jot things down before my short-term memory crashes yet one more time. This is something small you can grab and go. I am so loving this organizer I'll have to buy one if I don't win one!! Of course, it can be used for just about anything that needs organizing, and I know we all have something that can be better organized :)

What are you waiting for - click the button!

Just Waiting

I went to the doctor yesterday, my official 5-year milestone. I guess thinking about driving 25 miles each way anywhere from 2-5 times per month for the past 5 years has finally sunk it - I'm tired!! Ok, five years surviving ANY Stage IV cancer is a big deal, and IBC is particularly sneaky and nasty so I'm pretty happy about that part. I'm not better, but I'm not considerably worse than when I started this part of my journey, so holding fairly stable is an okay place to be. Now, I'm just waiting - waiting for my test results, waiting to find out if my new medicines are working, waiting to hear if(when) I will start chemo again, waiting, waiting, waiting. I'm tired of that, too! I have some extra concerns right now, not sure if my kidney is working right or maybe has some metastisis, so the doctor is checking that. I've been so very blessed not to have had any organ involvement at all, and I would so very much like it to stay that way :) So, we'll wait some more and see what happens. My healing and the balance of my life is in the best hands possible--my Father God!