Green Light!!!

Kind Of….
If I don’t feel dizzy I can drive.
My fear is not feeling dizzy when I head out, but getting dizzy while I am out and about =)
We will be monitoring this closely. Basically the chemo eats up the prednisone and cortisone I’m on and apparently my chemo dose is winning this round. I will be on a double dose of my steroids until further notice. Not sure how that will change things, except that I am a little shaky now and then.
‘Talk’ to you all soon!
Triann

PS
Thank you to Belinda for driving ‘duty’ and Sheila for fulfilling my Ice Cream cravings. Thank you also to Laura, Andrea, and Heather for offers of help. I appreciate all of you wonderful ladies who are jumping in when things get rough! (and everyone else who I may not have mentioned)

Update on the Driving Dilemma

I have cancelled a couple of appointments and have friends helping with the rest.
I feel SO much better now that the doctor has changed the dosage on some of my meds.
I think I am OK, but am waiting for the green light from my doctor to be independent again.
Thank you all for your prayers.

Prayers Please

I just spoke with my Oncologist because I have been having some ‘difficulties’ with my chemo. Bottom line is I cannot drive until they work out the ‘kinks’. Please pray that the ‘kinks’ are worked out VERY soon. No driving is killer in this household.
Thanks
Triann

Things are looking up!



At least in my blood work =) The results from my lab work at MD Anderson measuring my Moitotane level indicates that I am at a 5.9 – nearly double what it had been just two weeks prior! I will be going in again this week for another blood draw and am confident my numbers will be looking good! We are aiming for a number between 13 and 20 to be ‘therapeutic’.

I had a wonderful trip to Virginia – thank you Silbernagel family!- and was so blessed that, not only did I get a rest and a true vacation, but Eric and the kids had such a fantastic time as well.Eric did an AMAZING job with them.I know he thinks that I think he is incapable, but it’s just my need for control that makes me worry about them! (perhaps it’s pride and control God is working on with me) He and the kids walked to the video store and rented a movie for family movie night, they made me several bracelets for my medic alert tag, and even baked and decorated cupcakes! I was VERY impressed.

Both kids are growing – shoes are too small and pants are too short! Do they really have to have a growth spurt at the SAME time?

A friend of ours gave us a TON of clothes for Daniel and Grandma and Grandpa Rose sent the kids shoe shopping =) Thank you everyone!

We are almost done completing our respite care paperwork and we should have someone on board to start helping me out by the end of the week!

All great things.

Keep up the prayers!
Triann

Totally Off Topic – Well, Sort Of

Last spring I called my good friend and said ‘We have to go to this SHE SPEAKS Conference being put on by Proverbs 31 Ministries’. The calling to write a book about my life experiences with my daughter who has Spina Bifida had been on my heart for quite some time. But shortly after that conversation with my friend, our family relocated for my husband’s job and the money for the conference just wasn’t there. So I resigned myself to looking forward to the 2009 conference. Well,this year doesn’t look any more promising financially, but my calling is even stronger with the experiences I have had since last Spring! Seeing the She Blogs track resulted in a happy dance right then and there!

A book is still roaming around in the back of my head, but blogging has really captured me and fulfilled the need to share portions of my story and the satisfaction of knowing I can be an encouragement as I journey towards ‘writing’ someday.

I would encourage you to check out Proverbs 31 Ministries and to research the conference that is coming up in July. Perhaps this is a calling you have had, you just needed the tools. Or perhaps this will be the seed that needed to be planted so you too could further the kingdom with your speaking, leading, writing, or blogging. Whatever the case, I hope you look into it. At the very least, check their website for the amazing daily devotions. I just love how God has spoken to my heart through other ladies in Christ at Proverbs 31.

I started this blog – with the help of my DH – as a way to keep family and friends updated on what was going on with me after my ‘out-of-the-blue’ diagnosis of adrenal cancer. Is there ever a cancer diagnosis that is not a surprise? I am guessing ‘NO’, but it was truly a shocker at age 34 and ‘healthy’.

However, this blog has ended up as so much more than a medical update. At times I try really hard to keep it to the facts, but really it is therapy and I cannot separate my medical issues with who I am in the other areas of my life.

I have known for years that God was calling me to write. I have a 7 year old with ‘special needs’ (I hate that term, but ‘disabled’ and handicapped’ aren’t any better) and there is SO little out there for moms going through the struggles of raising a child with health issues. I have a dear friend with a daughter four months younger than mine with the same diagnosis and we truly would be lost without each other. To KNOW that one is not alone on such a journey is awesome. I understand that we are not alone when we are believers – followers of Christ -and that He will never leave us or forsake us. But I also believe that he gives us people here on earth to help us through the tough times as well. I am certain that there are moms out there who are alone – or feel alone. Who struggle through each day with no encouraging words or glimpses of hope. God has brought several of these ladies across my path and I have been so blessed to know each of them and to have new friends to share this journey with. But now I am wondering if that is my only mission. There are now three in our household with major medical issues. We’ve had layoffs, and wildfires, and doctors, Oh My!

At every turn I have a brand new potential ‘audience’. A new group I can relate to and speak to from the heart because I’ve been there – or am currently in the midst of!

Now I need help in my focus. Discerning the where do I start? Do I roll all my experiences into one package, or am I to break it down into separate pieces? I used to think that a book was the only avenue to reaching those who needed to hear the message God had given to me to share, but since beginning this blog last fall, I am invigorated by the INSTANT nature of a blog. I don’t have to wait until I have completed numerous rough drafts and pitched to a number of publishers to get – perhaps – on a bookshelf and pray that the right person finds what they need to hear so desperately. A mom can do a search for ‘mom with cancer’ or ‘raising a child with special needs’ and Viola! I’m there. More importantly, GOD is there – ready to meet her need to be understood. The need to connect. The need to be loved, especially by her Creator.

Although I continue to pursue writing a book, I believe He is calling me to reach others swiftly.

All that being said, I obviously need help honing skills, coming up with a Blog name (Insert Catchy Title Here was a placeholder while I thought of something else and that was FIVE months ago!), narrowing down my target audience, and growing my blog so that I can reach more moms – to offer them the light of Christ and be a friend to those who are also overwhelmed and tired, just like me.

Attending the conference would be such a treat. Winning a Scholarship would be a tremendous blessing! I have read many other bloggers’ entries and there are so many talented ladies with incredible hearts for God. I must continue reminding myself that God’s timing is perfect that if it is to be, it will be. God is in control and He knows the right time for me to attend the conference, if ever. I may not always understand His timing, or His path, but He continually reassures me that He cares about every detail of my life and has my best interest at heart. Perhaps this blog will encourage you to enter the Scholarship contest with She Speaks and catapult you into an unforgettable journey!

I hope to see you there ladies! If not, I will continue to visit with you on the World Wide Web! =)

In Him,
Triann

The Results Are In…Almost

The doctor said I made his day!
That’s got to be good, right?? =)
He was very pleased – both with how ‘little’ the chemo was affecting me (compared to others who are on it) and that my scans were clean.
He said my bloodwork was gorgeous!
We are still a long ways off from the therapeutic level of the chemo, but he said it will take awhile.
His expectation was for me to be in much worse shape than I was.
The Radiology reports sounded good, but he hadn’t actually laid eyes on the scans himself. He will call me next week once he has done that.
There is a cyst on my kidney, but they are not concerned about that.
I had a ultrasound of my thyroid and there are several nodules, but they appear benign and they will recheck those in a year. (If they had looked suspicious they would have done a biopsy)
My bloodwork looks good – my steroid dose is appropriate. He will continue to check my Mitotane level monthly.

There are always questions I forget to ask, so I will be sending him an e-mail Monday!

Again – thank you for your prayers. I will try to recount more adventures later, I have just been SO tired and kind of busy with travel and birthdays.

We will return to Houston late in the summer for the next round of tests.

Micro Summary of Day One, Trip Two at MD Anderson

Haircut -looks good so far – will post pics later.
Ultrasound of Thyroid/neck – NO biopsy needed! Praise God!
Blood Draw – couldn’t count the number of vials required – yikes!
Chest X-ray
900 ml of Berry Barium ‘smoothie’ later only to find out they decided against the contrast CT!! Arrgh!
Chest CT
Contrast MRI of abdomen and pelvis.

Will give more details later.

Appointment with Oncologist today at 11AM. Don’t expect full report until Friday night, but perhaps sooner. I will try!

Thank you for your prayers, texts, e-cards, and support.

Triann

Making the Most of It

In an earlier post I mentioned the Cleaning for a Reason foundation. I am still working on getting all of the required paperwork to them, but once I complete that, they will come in and clean my house once a month for 4 months. I am REALLY looking forward to that!

Yesterday my sister *lovingly* told me I really needed to figure out how to budget for a haircut! I agree. But it is tough to ‘justify’ such things right now. I figure I can always put it in a ponytail and spend my money in other areas that are of a higher value to me. I won’t go into it, but let’s just say it has always been hard for me to spend money on myself to begin with and things have been such that it is even tougher for me to make an appointment that I know will not be cheap and seems selfish.

So…I thought to myself, if there is a program out there to help women clean their homes while they are on Chemo, perhaps there is a program for women with cancer to get their haircut as well.

I am happy to announce that, ‘yes, Virginia, there is a Santa Claus’!!

MD Anderson actually has a beauty salon/barber shop on site and they give shampoos, haircuts, scarves, and wigs to all patients FREE of charge! Thankfully, I don’t need the wig/scarf benefit with the type of chemo I am on, but the haircut is certainly a welcome treat! It is on a first come, first serve basis – so pray that I get in!!

Typically I am VERY picky/nervous about who cuts my hair because it is naturally curly and the wrong cut can be disastrous! But I think I am up to the adventure and certainly willing to take a risk for such a great price! (my dad would be proud =)

Perhaps I will post before and after pictures and you all can decide!

Pray that I am able to get in and that the end result doesn’t make me cry!

Triann

Recent Daniel Quotes

‘Maebe is my favorite puppy. And she is great at jumping on the couch like me!’

Daddy: ‘Daniel, go find your Crocs’
Daniel: ‘I have to go back to my wolf family first’

Seriously, where does he come up with this stuff?? Hilarious, really.

Mito-‘drain’ Update

‘You take the good, you take the bad, you take them all and there you have the Facts of Life, the Facts of Life…’

Is it stuck in your head yet?
Oh good. Mission Accomplished! =)

I just got off of the phone with my Oncology nurse and now I feel about 2 inches tall and technically it is not my fault. But I still feel like I am in Time Out for being STUPID! (I would be scolded by Emily if she heard me say that!)
This is how the story goes. Eric cancelled our home phone number TWO months ago with Verizon. Apparently…our voice mail is still active. Well, I called and left a message for the nurse about my new cell phone number but they were still leaving messages on my home number.
THEREFORE, I did NOT get the message that I needed to go up -again- on my Chemo pills (Mitotane). Arghh.
I was scolded and told that I had to ‘confess my sins’ to the Dr next week!(not her words, but my interpretation)
She was nice about it, but still irritated that I hadn’t started on the 10 chemo pills a day yet. But I didn’t know! And I did call and give them my new number. And she has left messages on my new cell, so I knew she had it and assumed that was the only number they were using. What other messages am I missing when people think they are reaching me?? Arghh again!

My mitotane level is at a 3. It needs to be a minimum of 13. I cannot imagine what that means for my energy level and confusion/memory loss in the future. Perhaps nothing, but I am nervous. Part of the questioning I have for my doctor is if I have to take 4 times more pills will my side effects be 4 times worse? Or will my body adjust as I go up on the ‘meds’ and I will basically feel like I do now? Perhaps only time will tell…

I will let you know how ‘confession’ goes next week with my doctor!
Triann