Friday, July 30, 2010

If the puzzle piece fits....

The puzzle is complete! Not an actual puzzle again...my treatment puzzle.

My visit with MD Anderson was yesterday. We woke up, got ready, got the kids off to this car and that car of my dear friends who kept them on short notice and we were on the road by 10am. We got to MD Anderson right on time making one small stop on the way, and checked in. That place is right on time, very helpful, very easy to navigate for the most part, and it was great.

My prayers were: #1: that they would not want to delay my treatments any longer by running more tests, and #2: that I would like it there and make my decision easier on where to go for treatments.

So, when I walked in, and found the places I needed to go, met with the financial guy abut my account, got checked in, had lunch, saw the nurse, and was waiting on the Dr, I was anxious the whole time. When the Dr came in.....OMG let me just say he was FABULOUS and all my anxiety subsided almost instantly! He is a taller and slimmer version of Doug Shadle, for those who know him..... and he never once looked at my file during our visit. He walked in, knew all my history, knew all about my tumor, knew all about my cancer, etc. The first thing he said to me was "I looked at your file and I'm wondering how you got so lucky to end up here. You don't smoke, don't drink that much, it's not genetic, and you eat healthy and exercise. What happened?" to which I responded something like "It's just the way the cards were dealt". So, we go into depth about my lovely diagnosis of Sarcoid, the cancer, tumor, the whole nine yards. He answered every question I had before I had to ask, and at the end he described my treatments, which were opposite of my former oncologist. He is doing 12 weeks of Taxol, followed by 4 doses, 3 weeks apart of FAC. My former oncologist only wanted to do the "AC" and when asked what the difference was he explained "the AC is compared, in a study that we at MDA did a few years back, to a drug combination that was invented in the late 1970's. The AC approach is the same effectiveness as the other drug (which I can't remember the name he told me) and when you add the "F" drug to it, it becomes superior, more effective, and just plain works better than the old drug AND plain AC" So, everything else was about the same as what my former surgeon said, stage 3...chemo, then mastectomy and lymph node removal, then radiation, then reconstructive. But, the difference is that I will meet with the surgeon and the plastic surgeon early on, rather than after chemo. So, we will all be on the same page, the same timeline, and I will know what the plans are early on.

So, prayer #2 answered...... I love that place, and I love Dr Theriault!!!

Then he said "so, do you want to start chemo tomorrow?" and I was like "uuumm, I guess...I can....we wanted to shoot for Wednesdays for our schedule to work better" and he said "OK, then can you do today and then we can move you back one day next round to Wednesdays?" so we were again like "uuuhhh...sure???" So, I finished with him at about 3pm, they sent me for a blood draw and chest X-ray which took a total of 10 minutes to do, and then I went and got my chemo orders, checked in by 3:30 and they took me back. I had to go to a different section to have my port accessed for the first time since it wasn't installed there, and then go back to the chemo room. Got back there about 5pm, and they started the IV for my steroids. After that was done dripping, I had to wait 30 minutes for it to absorb and then they started my first round of Taxol at about 6:15. We were out of there by 7:30ish and on our way home! Holy Cow!!

Prayer #1 answered! Any tests he wants to run can be run after they have started my chemo! The battle has officially started!

They give you a month long schedule, you can't pick the times, but they aim for your favorite day of the week. So, aside from my Ultrasound and Mammogram (on their equipment) being this Monday and the 4 week follow up being on a Monday (the Monday that school starts...ugh) everything for the next month falls on Wednesdays!

The Taxol is an "easier, liter version of chemo" so my hair will thin, but not completely fall out right away, not much nausea/vomiting, and a little bit of a few other minor side effects. FAC is the harder chemo where your hair falls out almost immediately, side effects are harder, and because you go every 3 weeks, your blood counts go down for a longer period of time, making you more susceptible to risk of germs/colds. Luckily, that will be during cold and flu season (yay! sarcastically) so....I will be staying home bound during that time and carefully screening my visitors!

I am not really feeling any side effects as of yet. A little bit of heartburn but I think that's from the mediastinoscopy on Monday, and I did not sleep last night because I forgot about sleeping pills till 4am. The sleeplessness is caused by the steroid dose I was given, not the Taxol itself. But the major one: I'm hot! yep, you heard me....I am HOT! This is RARE for me and my 90/60 normal blood pressure. I sleep with 4 blankets, and by 4 blankets... I don't mean 4 sheets....I mean 1 sheet, 1 cotton blanket, 1 heating blanket not plugged in, and 1 comforter. I sweat most of the night last night. Ugh! It isn't so much that my entire body is hot, my insides were hot and felt like they were burning, but my outsides were a bit chilly. This is normal with Taxol and should subside a day or so after each treatment, from what I'm told.

During the chemo, the volunteer services brought me a free bandanna type hat that fits my big head. It's fitted with elastic and then ties in the back, so that will be for my "no wig days". I've had issues finding a cute head wrap in my price range, cute bandanna that fits my head (those 22" Hobby Lobby ones don't work...I need 25" or bigger) and hats just don't come down all the way in the back, so I have to wear a bandanna under it. I have tons of ball caps, just need the undergarment for them. :-) Hopefully when Joyce and I go to the wig store, they may have a variety there, or I may check out the store down at MDA. We just didn't have a chance to go by there yesterday.

Oh, and some of our family odds, just for giggles:
4.4% of women in my age range (30-40) get breast cancer. Even less when it's not genetic (mine is not)
15% of all women diagnosed with breast cancer get triple negative tumors (yay me!)
Texas is in the lowest bracket of Breast cancer risk in women by state
In 25 years, the risk of returning Breast cancer is 20% (NO THANK YOU! I won't even be 60!)

2% of African American women are affected by Sarcoidosis, even less in other ethnicities (so I'm probably in like 1-1.5%)
Sarcoidosis occurs more often in African American women than in Caucasian women. (click here for more information on what sarcoidosis is)

1 in every 2,000 live births result in Craniosynostosis
May be as high as 2 in every 2,000 in infant boys (like Grayson)
More often occurs involving a genetic syndrome (not like Grayson's)
More often occurs in first born sons (not like Grayson)
Only 10% of ALL Cranio kids have multiple sutures fused (like Grayson)
Non-Genetic Cranio occurs more often in drug using moms and low weight gain moms (SOOO NOT like Grayson's mom)
Often less common when sensible diet and exercise is used during pregnancy (spin class and Gestational diet during entire pregnancy!)

So, I'm thinking we need to play the lottery more often...we got some LOW odds and keep getting stuff!

7 comments:

  1. Tiffany - so glad you got your answers - the wig situation will work out as well!

    Terri David

    ReplyDelete
  2. My darling daughter, "you are fearfully and wonderfully made"(Psalm 139:14). You were designed by God, and He makes each one of us uniquely different.I am so thankful for this awesome doctor. Praise God that your prayers are being answered.
    I am glad you have had goodness and mercy flowing over you this week.
    Many more answered prayers are on the way!!
    I love you.

    ReplyDelete
  3. I'm so glad you were able to start chemo already! It sounds like God really directed your steps & gave you favor!

    ReplyDelete
  4. Dear Tiffany,

    I'm grinning from ear to ear for you that you were able to get your first Taxol. I have experience with wigs and can tell you of the wig shop I ended up at. We thought I had a big head until my hair fell out, my head's not that big!! Thankfully my Mama was very conscientious about making sure I never laid only in one position when I was a baby.

    I am praying and trusting that our Great Physician heals you too!

    Please call or email anytime.

    Love and Blessings from the top of my Heart,

    Moni

    ReplyDelete
  5. Tiffany,
    So glad to hear so many things are going your way in this challenging situation. Our God hears our prayers and answers in mighty ways in the midst of life's traumas.

    Rebecca Miller

    ReplyDelete
  6. What wonderful news! I know how anxious you were about getting the battle started! Continued prayers! Lori

    ReplyDelete
  7. YAY Tiffany!!! 'Bout time for some grand slams to go your way!!! I am so glad for each of these things to have come to you after many weeks of frustrations. MDA is the best and it looks like you got their best!!! Lots of prayers being sent from Minnesota directly to The Big Guy for you!!!

    ReplyDelete