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