change of one med

Went in for my blood test Friday 18th and talked to the Oncologist. Don’t know how test came out… This place isn’t big on sharing the information in my folder. In fact, they GUARD the file like many other doctors’ offices do. I just don’t understand, if it’s YOUR file, your information, you paid for… what is the big secrete? At University of Chicago, they not only show you, they have copies ready for you, of everything. They don’t use the front folder flap to cover your reports if they see you are trying to glance over at it.

After telling the Oncologist how paralyzed I was the first week & how good for nothing I still was the 2nd week, he decided to try this week’s treatment without the Neulasta (which is the drug that forces your body to produce white blood cells to fight any potential infections). I’m happy that I may not have as much pain & trouble I had the last time, but I am extremely fearful of the potential for infection of any kind. From a cut, from food that may not be perfectly “kosher”, a cold… This is the time of year our allergies kick in and I more often then not end up with bronchitis or pneumonia. The ramifications of that are now frightening.
Next treatment – This Friday 25th.

music can change, when we change....

After the first chemo treatment, for the first few days I felt absolutely horrid.

All I could think of was Metallica’s "ONE "...

“…. Oh God please wake me…”

I didn’t want to, it just kept popping in there all by itself. Though I’m not a solder, I kept wishing this was all a bad nightmare and wanted to wake up.

Heading into my next treatment this Friday, I keep telling myself, HANG TOUGH.

For years, that song had me head banging in the car with the rest of ‘em,

But most recently it made me cry. Now it holds inspiration.

Listen here... Tesla - Hang Tough - Free FM
Watch it here... Tesla You Tube

HANG TOUGH

Took a shot to the chin

Looks like you just can't win

In this do or die situation

And it's harder than it seems

To survive, keep alive and make your dreams,

Make your dreams all come true

“…….

But you can't let it bring ya down

If you should stumble, if you should fall

Pick yourself up off the floor

Fight for what's right and stand your ground

You gotta give it your best shot

Give it ev'rything you got

Oh, you gotta hang tough

Hang tough

When the goin' gets rough

Hang tough

You got to give it all you've got

Hang tough

Keep your head above the ground

Don't you let it get you down

Oh, you gotta hang tough

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Again, thanks boys.

Ceremony – the cutting of the hair

What an event.

Anyone who knows me knows I’ve never had short hair since birth. MAYBE once it was at my shoulders. Last night, Sue came over to gracefully do the honors before the shedding begins. Bobby was front and center (with typical man comments, saying we should shave in some obscenities). Mom stood there with her eyes wider then usual and Sarah was eager to be part of it to make the first cut, of which we are sending the hunk to Locks-of-Love. Many women opt to just shave their heads. Kudos to them! I have balls, but just not that big. It’s short. I’ve never felt air on my neck before. Weird. Really, really weird. But dang cute. Did a good job sissy, Thanks!

still tired

I’ve been quiet on this end, and I know a lot of people are worried and curious how things are going.

I did have my first Chemotherapy treatment Friday 4/4. The day after each therapy, I go to the hospital for a shot. The shot is supposed to increase the white blood cell count to help fight infections. Be it from a paper cut, scratch, illnesses others may carry or bring home or simply shaking hands in church.

Not only does every person have different reactions from chemotherapy, but there are also many other forms of medications of chemotherapy and many forms of administration of chemotherapy. Each have their own side affects, some have near none. Some are awful. The combo I’m on is
Adriamycin & Cytoxan + Taxotere (AC+T or TAC since I’m getting it all at once instead of 1st group of treatments then 2nd - standard treatment is ACx4 + Tx4 which means 4 treatments of AC then 4 treatments of T - I'm getting T AC x 6 all three for SIX treatments). Neulasta the next day.

Without going into too much detail (we all know how I can get carried away), yes there is pain. Quite a bit & different types. The bone & muscle pain, was exhausting in itself. Though I understood why it was there, it didn’t make it any easier to tolerate. The Taxotere kills the white blood cell count, while the Neulasta shot is designed to force your body to produce white blood cells. That could wreak havoc in your bones. Some pain is heightened when it’s scary because you aren’t sure what is going on. Pain of internal organs when you lean against a counter top or bend a certain way, and it feels like they are swollen and bruised. I started feeling better a week after initial treatment. However, it never really goes away. One day feels better, then the next, something else starts up. There doesn’t seem to be any pattern I have discovered yet. The tired and dizzy is always there. There isn’t much of a pattern with that either. I could be sitting for 2 minutes and get dizzy & tired and absolutely have to lay down or it could be an hour before I feel the dizzy & tired creep in. It bounces back and forth. No pattern. It’s been 11 days since the first treatment, and I still can’t trust myself in the shower. Turning to rinse off, is a good recipe for the drunk spins.

Another side affect, besides stringing out your nervous system, that is really scary is chemo brain. My daughter heard me mention it to someone over Easter. Tearfully she pulled me aside and asked “are you going to forget who I am mom?” Naturally I told her I could never forget her, because I just love her too much. But the seriousness of chemo brain, is still very real and very scary.
Would I know if I had it?
Uh…….

Surprise!

Since Sunday, Sarah has been sick. Throat so sore she’d rather drool then attempt to swallow with a fever of 102 and the kind of earache that makes you not want to lay down even when you are exhausted… She’s been whimpering from the pain and shivering uncontrollably at nigh from the fever spiking (even on slightly higher dose of Advil) and we’ve been up for a good 4-5 hours during the last couple nights.

My left arm has been out of commission, but improving, then I had surgery on the RIGHT side to install a “medi port” under the skin directly into some big vein near the heart. I am, unable to do much movement with either arm…. Can’t dress myself well… tired from the last two sleepless nights trying to be a mom (which I wouldn’t trade for anything. Taking care of my daughter carries the highest reward & satisfaction I could ever ask for.)

Still in my pajamas, hair a total mess there’s a knock on the door…. And oh - my - GOD it’s two of my co-workers from Catalyst Exhibits. Allison & Kelly (Ken, check my spelling on one of these here!) Bearing Gifts. Everyone pooled together, checked on a special diet for Chemo patients, and had a couple weeks worth of food made up. They delivered it personally. And DAMN it smells good! I cannot tell you, how much this HELPS! In so many ways. It saves me from having to go to the store & lift things (you know, they don’t ask “Need help outside Maam?” when you actually really DO need help), it saves my husband from going, it saves us from cooking and cleaning afterward, and it really helps on the money front as well! There were also a wad of gift cards to a restaurant. The stack was quite large, I thought it was a deck of playing cards at first! I am humbled and very very thankful for what you have all done.

I noticed from day one of working at Catalyst Exhibits, It's completely different. Everyone there is so much more then you’d expect. It’s truly like a family. A normal, fun at times, odd at times, family. I’ve never before seen anyone in a high stress high position that still really cares about the employees and takes the time to TELL you AND SHOW you. But they do. They are unlike anything you’d ever expect. Real. Human. Compassionate.

They don’t hide when a situation arises.
THEY RISE TO the occasion.
I can’t THANK YOU enough everyone at Catalyst!
And I can’t wait to come back!

The CALL came....

I have been, as well as my entire family, an absolute nervous wreck, not being able to sleep, eat, praying every moment possible that God won’t take me away from my husband and daughter, mother, uncles & aunts yet, paralyzed with fear, waiting for results of my scans. I accomplished absolutely nothing just sitting waiting for the phone to ring with news one way or the other. With that, comes added guilt that my daughter is on spring break, and I’ve done NOTHING with her but sit around with the deer in the headlight look worrying. Not even a walk around the block... I feel like a horrible mother.

Thinking “no news is good news” then bouncing to “I must be riddled with cancer in the organs or bones, they don’t know how to break the news to me and over the phone no less….” Depending on how the bone scan came back would put the kabosh on chemo & radiation. Seems like it would be more of a “management” type plan in that case rather then a destroy the cancer with chemo thing.

The call finally came this morning.

The many many many prayers you’ve all said & I’ve said & everyone else said… PAID OFF! The major organ scan & bone scan came back negative. A GOOD NEGATIVE. I think I’m gonna pee in my pants. Oh our God, I cannot tell you how thankful and relieved I am (even though it is in my blood stream) to remain at a stage III cancer and not have bumped up to a stage 4 !

THANK YOU - THANK YOU - THANK YOU - TO EVERYONE PRAYING FOR US!!!!!

We are over that hurdle. Now we need maintenance prayers that the Chemo/Radiation & other medications takes care of the cancer that is still there. All the sickness Chemo will bring is such a small price to pay, for more time here on earth with those I love so much.

Thank you everyone! I feel like I could run a marathon right now. I’m so high on this shred of good news. (in a normal healthy state I’d never in my wildest dreams consider a marathon, but even though I'm sleep deprived, I'm so jacked up with energy, I could now.) I think mom is gonna faint. I hope Bobby (hubby) can drive home with out a wreck. Good news has been extremely limited around here & what little bit we get seems to be such a huge triumph; it brings on the shakes & tears of joy. I've been re-mobilized. I need to do something fun with my family. And today, I feel I can certinly accomplish that!

More News

I only spoke with Carol through text message today and even that is heart breaking. 26 of the 30 lymph nodes that were removed showed stage 3 cancer. There will be a six month treatment of chemo, once a week.

Carol will be undergoing an entire body scan on Monday, March 24th, each and everyone of you reading this blog.. pray..pray hard, pray often.

I love you little jilly bean

Setting the record....

First let me say this, I have no intentions of whining about what is happening. I’m just explaining what is happening because there are so many out there praying for me and my family, and they want to know what is actually going on. In fact... Through out this entire thing, I have NEVER ONCE asked “WHY ME”. Instead, I’ve been praying my butt off that I, and anyone around me, is learning exactly what I (we) are supposed to be learning.

God doesn’t “punish” us. He forces us to learn what we need to learn. Just like a mom has to let her toddler learn to walk. That toddler will fall many times before being able to do it well on her own. But mom stands there with her arms near that toddler in case she falls, so the fall won’t hurt quite as much. But the fall has to happen, till you learn. Sometimes God has to let us fall down and scrape our knees to learn a lesson. But he is right there to pick us up when we need support.

How it Unfolded

I knew at the end of Summer ’07 “something wasn’t right”. You know, sometimes you can just FEEL it. Anyhow, I made an appointment with my doctor for a routine exam & informed her of my newer ‘problems’. I needed further examination. I waited till the first of the new year because something told me this would be BIG and we were getting MUCH better insurance the 1st of the year. Couple days before my “basement surgery” in January ’08, I had my mammogram at the same time as my blood tests for surgery. The very next day while healing from my surgery, I receive a certified letter from the hospital that my mammogram had issues. (I’m not surprised. That was really the reason I wanted that appointment in the first place.) So back I went for a Needle Core Biopsy. One of the worst procedures I’ve ever had (and I’ve had my share of needle pokes and surgeries). I wouldn’t wish it on my enemy (Actually, I hope I don’t have any of those). They just kept telling me, “I know it’s uncomfortable, just hang in there”. Uncomfortable my ass. Later, I’d find out WHY it was so horrible….. For one, it felt like they were sucking all the veins out of my arm, back and chest through their quite large needle. I’m not sure what 10 gauge is, but it sure looked awful big to be sticking in someone that was awake. Later I discovered, it sent me through the roof because, they had traveled with the needle and suction way beyond the area they numbed. This was cold turkey surgery. I didn’t get any whisky or leather to bite on! (I know this because I later had another one done elsewhere and didn’t feel much. Because they kept NUMBING THE TISSUE deeper and deeper as far as they needed to get.) So if you or anyone you know needs to have a core biopsy, tell them, it's YOUR BODY! TELL THEM TO STOP and NUMB IT DEEPER if you are feeling it!

In any event, my doctor called me and said “you have nothing to worry about. It’s only PRE cancer. NOT cancer. Come in next week.” Next week I go in and she tells me, make an appointment with this surgeon and she’ll just remove the rest of that spot that the biopsy didn’t get. Hmmmm - So I get a copy of my pathology report and take it home. I start researching the terminology on it. Especially the second page, of which the secretary never gave to the doctor … and found out… this isn’t PRE cancer. This IS CANCER. And the worst of this kind as far as grade and aggressiveness. After one mess up after another from the secretary / hospital etc… I decided to go to the best hospital I could.

Where, they moved at quite the pace to figure out exactly what is going on. Yes, it is breast cancer. Ductal Carcinoma In Situ = DCIS. High Grade Carcinoma / Comedo type. And guess what else? It’s all over the lymph nodes too. Had my surgery to remove the DCIS and she took out the lymph nodes under my arm. They don’t look good.
.....
Which brings us to today. I’m still sitting here with a drainage tube. I’m not sure if the pain is getting any less, or if I’m getting used to it.

Oh, and I failed to mention, my husband’s place of business is shutting down. He’s out of a job and we’ll be out of insurance quite soon. The office seems to still all be in tact…. Funny, along comes the good insurance after all these years of crappy insurance… and now we only get 4 months to use it. That seems a bit premeditated. Or is it just me? Yes, COBRA is a great policy, but when you struggle as it is, can barely pay your mortgage (when you are half DONE paying it off) $1,500 a month for family insurance coverage, really isn’t much of a possibility.

Through all of this, the hospital I’m traveling to has been absolutely fantastic. They are moving fast as possible to get me where I need to be, before the shit hits the fan in our wallets.

And I keep thinking, had I not gone to this other hospital… the one near my home would have taken out the rest of the first tumor. Never seeing everything else going on in my body. I could have passed on by this summer.

Considering my first doctor said “ONLY pre-cancer” and nothing to worry about in the first doctor's eyes, Perhaps I should look into my “over active cells” comment my initial doctor made about my basement surgery pathology report in January. . Wonder how many pages were missing from that report…..


Research Hospitals and ALWAYS get a second opinion!!!
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I WANT MY MOMMY

I don't know HOW we could get through this without my mother.
She has been, my chauffeur to all my appointments, our house keeper, shopper, our cook, my "Alice", my confidant, my rock. I can't be thankful enough. I (we) are so very lucky and blessed to have her here! She has got to be more tired and drained then I am.
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Thanks mom!
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