Egast, It's Been a Month!

So sorry that it has been so long since I have blogged. A great has happened since my last post. Two more rounds of chemo - ick and double ick. Vacation - YEAH! And a whole lot of getting through chemo, taking care of kids and trying to keep going.
A friend emailed and mentioned where she got my blog. I would appreciate if she would write back and leave her email. I won't post it to the blog - thanks to a fellow traveling autism mom!
We went to Boston and Maine for a long week. A lot of driving but the scenery was breathtakingly beautiful. Bar Harbor was a dream and the coast was picturesque. I recommend it to everyone.
Now I am coping with round three and resting for round four. The doc says he will stop at four - that is enough for me. My brain is a blur and my stomach a mess. I think I can go one more but that's it.
I will write again when my brain and stomach settle.

I Want to See the Inside of My Eyelids

Going to sleep is hardest for me. Once I'm asleep there is no problem but getting there is a great big, fat, honking problem. What a surprise since I have so much to worry about. As you can relate, the best time to worry is right before sleep.
I tried a recommendation from my Grandpa Chris on the liposarcoma support list. He suggested that you picture your happiest moment. In detail. Sights, sounds, feelings. I tried that. I pictured my most content moment on the beach at the Outer Banks collecting sea shells with my parents, children and husband.
No go.
So I prayed the rosary. Each and every bead. No shortcuts.
No go.
Then I remembered the happiest moment was not the Outer Banks but Mom's first visit. When she visited with God and he removed the basket of stones from my chest. I floated free and happier than ever before.
Of course, I immediately came down to write about it.

Two Down How Many to Go?

Today was second chemo day. Mentally it was real hard for me to go back up to Cleveland for another dose. I was just getting my brain back. I was feeling energetic and hopeful. Only to get shot down again.
I did find out that one the medications I was taking caused that manic feeling. I thought it was the Neulasta shot but it was the nausea medicine. Apparently there is a form of many breast cancer patients only receive four cycles. And the side effects will get progressively worse.
Or they could get better and this is really kicking the cancer's but.
I am opting for the last one.

As Expected

I have been listening to my own body. I watched and listened as my hair fell out; mouth became sore; stomach ached and heaved; bones ached; hot flashes; extreme fatigue and other weird occurrences. Each time a new symptom appeared I thought about what chemotherapy is and how it affects your body. Then a revelation hit and I said - "Oh, this is what they meant!"

Chemotherapy is designed to kill off any rapidly reproducing cells - like cancer cells. My type, myxoid round cell liposarcoma, is very aggressive and rapidly reproduces. We are hopeful that the very reason it is so dangerous is the reason it responds to chemotherapy. Unfortunately, I will only know if it works if another does not return. Each symptom that I have experienced is a result from the cell death. The stomach cells are first, hair, mouth, blood, etc. It is as if I can track the chemotherapy moving through my body.

That essentially means that I am finally having a typical reaction. Normal. What a relief. After so many weird reactions, allergies and strange occurrences, it is nice to be typical somewhere.

Next week is my next round. I hope it proceeds like round one. Some people say that symptoms get progressively worse with each round. The docs are giving me an extra week to bounce back since we are not aggressively treating a tumor.

Here I sit -- bald yet feeling strong. I will keep you posted.

Bald and Beautiful

Last week when walking with my children, I ran my hands through my hair and felt a clump come out in my hand. The next day I shaved it all off.
What a liberating experience! I think I look pretty good. The hard part is the stares and looks of fear. Oh well, that is their problem.
I tried on a few wigs but they all looked like wigs. And they were very hot. Really hot. Stifling hot. Get the picture.
So I have a few scarves, hats and older wigs. In a few weeks I am meeting with a woman to help style them as part of class called "Wigs and Me." The local cancer support group runs it. I hope it helps.
Overall, the first round of chemo has been fine. There are bumps like mouth sores, weird and painful aches, cravings, queasiness and more. But they are nothing compared to recovery from open heart surgery.
A piece of cake.
Maybe I'll keep this style - it certainly is easy to care for!

MY BUCKET LIST

On the back of one of my kitchen cabinet doors is a special written list. At the time, I didn't know it was called a bucket list. My husband encouraged me to write it out. I not only found it cathartic but hopeful. Even if I meet everything on my list, I will look back with satisfaction and wonderful memories.
I wrote a weird email today. To Ellen DeGeneres. My daughter told me about a trip that Ellen had given. It included a car and the winner was supposed to drive across country. That of course reminded me of my bucket list. So I sent an email making a wish that Ellen would grant me a trip across country sharing the beauty of the US and creating memories with my family.
Then I realized that while the list is posted on my cabinet door; I have not posted it here in my most public of forums. So here goes. My bucket list. (Now I will have to do all of this!)

Travel across country camping. A very long, multi week vacation driving to national parks, monuments and historic cities. Sharing every moment with my family.

Deliver a comedy monologue at an open mic night in a comedy club.

Travel to Egypt to see the pyramids then onto Greece to see the Parthenon.

Travel through Europe; especially Germany where my grandmother was from and visiting my distant cousins.

Zip line over and through the jungles of Costa Rica.

Whale watch off either the east or west coast. Perhaps we can do that on the trip out west.

White water rafting through the wilds of PA or WV.

Co host a radio show for just one day. Just like I did in college.

Snorkel off the Great Barrier in Australia. Then onto hiking in New Zealand. Or the Bahamas - I do want to see the Red Rock in Australia though. But Iwon't be picky.

So that's it. I know there is more in me. I have already crossed off climbing a rock wall and hiking Mammoth Cave. Slowly but surely I will fill those photo albums.

One Down Five to Go

This will be a quick post. I am so tired that my eyes are crossing. I wanted to let everyone know that I made it through the first cycle. No codes were called. I am so relieved.
The nauseau is so far is manageable with the drugs. Except the drugs make you so sleepy. They gave me a white cell booster shot so I hope my I don't dip too far down.
All in all a positive trip.