Thank You Universe

Today I am grateful for . . .

My health
My husband
Megan
Sarah
Adam
My home
My legs, arms and lungs
My heart
My family -- father, sisters and brothers
Matt, Bruce, Mary and Cathy
My friends
Especially Monica, Cathie, Lisa and Katie
My neighbors
Especially Wendy, Brandy, Lori, Keena, Diane, Lisa and everyone else!!!
My soul sister Terrie
My doctors and their caring expertise
My Aunt Bitsy
My Uncle Peter, Uncle Curt and Uncle John
My Aunt Mary and Aunt Jean
My sister Debbie and mother Judy
My father John and Jim
Childhood vacations
Camping trips
Shooting stars
Cuddling with my son
Hugs from my daughters
Computer games
Funny TV shows
and the list goes on
Thank You Thank You Thank You Thank You

A Shift in Thinking

For the past several months, if not year, I have struggled with depression. Not surprising considering all that my body has gone through. I want to change that -- starting today.

I wrote awhile ago that the universe was yelling and screaming at me. Well, the universe was at it again and this time I listened. I picked up one of those women's magazines that line the grocery checkout. There seemed to be an interesting article on weight loss. Something that I have been attempting for some time.

The article talked about a book entitled "The Secret" by Rhonda Byrne. I looked through her website and was initially attracted and repulsed at the same time. Her basic premise is that in order to attract anything into your life you must send out something. If you are negative, then you only attract negative. I understand that part but the part that bothered me was the section on creating wealth. If you want wealth, then you must love money.

That seemed to strike at my very soul. How could I love money if I am a Christian woman putting God first in my life.

I was then standing in Borders for last minute Christmas gifts and impulsively purchased the book, The Secret. I read it standing in line and am still reading it many days later. I must say that it has changed my life. It is not unchristian as it directly quotes the bible -- "Ask and you shall receive." She often talks about the Universe but that also means God.

I will write more later as I seek to understand all of it. For now, I am enjoying the peace and gratitude the book has brought.

To Nicole

Nicole, I did not receive your email through the autism travel website. If you could respond here I do receive it privately. I will not post it in response to this blog. Thank you so much! Ann

The Universe is Yelling

Lately, the universe seems to be yelling at me. As you know, I have been struggling off and on with depression. In my head and heart I know that this is justified with all that has gone on from my cancer diagnosis, my son's autism and my mother's death. Any one of those is enough to put a sane person over the edge. I have consciously been trying to put myself in a better place.
My doc suggested that I use affirmations. I made a list and everyday I have been repeating them to myself. Positive sentences like "I will live and believe that I am cured." I started out with putting Today in front of each sentence. That helped because I was in the place that I could only control this moment and this day. Now I am dropping the word today and even altering the affirmations to reflect more current concerns. I consider that progress.
It hasn't directly addressed my concern over the cancer. I still have flashes in my mind that "this could be my last" kind of thing. And I probably always will. But this weekend, there seems to be a multitude of messages trying to get through to me. Or perhaps I am finally open to hearing them.
I was watching a sci fi web series while cleaning closets. A chore that I despise. The main character described himself as death. He said "I am death. I will choose my own death in my time in my way." I just sat there stupefied. Those words are so morbid yet so hopeful at the same time. I have been handed a death sentence but the choice to live is mine. I can choose when to pursue treatment or stop treatment. There will always be a clinical trial or alternative medicine. It is up to me to decide. This was a real shift for me or perhaps a return to hopefulness. I feel as if I have control back in my life.
On the way to pick up my daughter's friend for a sleepover I heard a song that has played constantly on the radio for many years. Several of the phrases again seemed to strike a cord.

It's not having what you want

It's wanting what you've got

I'm gonna soak up the sun

Gonna tell everyone to lighten up

I'm gonna soak up the sun

While it's still free

I'm gonna soak up the sun

Before it goes out on me

Don't have no master suite

I'm still the king of me

I going to tell 'em that

I've got no one to blame

For every time I feel

Cheryl Crow's Soak Up the Sun seems like a summer song to be played on the beach. Not a song that my help a depressed person. There were many other signs this weekend but those two were flashing neon.

Thanks universe.

Back from NYC

I just returned from NYC with good and bad news. First, the good news is that there is no current evidence of disease. So I am dancing with NED (no evidence of disease!)

The bad news is there are a few 'watch' areas on my lungs. They have not changed in size but there are more. They could be just normal blips that occur with allergies, surgeries, chemotherapy and daily living in the midwest. So I am hopeful and am going to believe that those watch areas are just that - occurance from daily living in the midwest.

There is additional news that could be interpreted as either good or bad. My survival prognosis has not changed. I am still looking at a high percentage of reoccurance and an average survival of five years. I am choosing to look at it differently -- I have survived three major surgeries, radiation and chemotherapy. I have beat the odds to date. Hot Damn!

Overall, it was a beautiful two days to visit NYC. They sky was blue and temperature perfect. Not a bad trip at all!

Going to NYC

I leave soon for Memorial Sloan Kettering Cancer Center in New York City. I will have CT scans and MRI's and blood tests and whatever they can throw at me. I am praying that they will find nothing. I think this is a certainty since I was tumor free before the chemo. If a tumor developed during chemo then the entire game has changed.
We are also going to meet with two oncologists. I need to have some hope since all the studies have shown that individuals in my situation live only an average of five years. And I have spent two fighting. That only gives me three statistically. A very small percentage live beyond five. I certainly am aiming for that small percentage. Unfortunately, there appears to be no specific indication of what gives you that advantage for the small percentage. Surgery, chemo, radiation -- there are no clear indications that any of those are more successful than others. Well, shit. So we are hoping that these well known onc's will have some clearer answers.
In the meantime I am eating the family out of house and home. First the steroids brought on a great hunger - and I mean great. Now it is just stress eating. At least I have lost the puffiness of the steroids. Now it's just down to fat.
Overall, I am doing OK. This was a difficult round of chemo. I am still exhausted all the time. Breathless with any exertion. I hope that will change as time takes me away from the last chemo round.
On the positive side, I have such great friends. Many brought meals these past several months. Thank goodness since cooking has been difficult. Two very good friends came last week to clean the house for me. What a blessing!
Despite the difficulty of this past year between open heart/lung surgery and four grueling rounds of chemo; stress of family and my own depression; I count myself a blessed individual. I wouldn't have made it this far if not for my family and friends!

The Final Round

Tomorrow I go for my last round of chemotherapy. What a long road! I know that it has only been four cycles but I would go through open heart surgery again before I would do any more chemo.
The most difficult part has been the loss of my brain. Chemo brain is a real condition. From the moment they shoot me up until about two weeks or more I can't form a sentence. I am blanking more and more. Although some would call that normal for me. I hope to regain some of my brain but am not sure that it will all come back.
My blog entries have been so black lately. I have been in a black space. The grind of the chemo is really wearing on me. It is hard to find the humor although I am sure that it surrounds me. The last two years of continuous struggle is wearing on my soul. I certainly could use some downtime.
I know that if I am wearing down, my friends and family must be burned out. I am appreciative of all they do -- I wouldn't be here if it weren't for them!
You won't hear from me for awhile. I anticipate this next treatment to be pretty brutal. Keep me in your prayers.

So Many Thoughts

Last night I read a news article of a woman diagnosed with an incurable cancer. She has lived with it for the last ten years. Her blog was entitled "Diary of a Dying Woman." I am jealous. She has had ten years. I will be lucky if I get a few more.
Enough of the morose. There are so many thoughts swirling in my head. The last two weeks has one word that describes it very well -- surreal. Grab a cup of coffee and prepare yourself. Yes, Virginia, this really did happen.
We had a great vacation. Maine is so very beautiful and Acadia National Park a jewel. On our way back home I received three voice mails from my father. He asked if we could come home early because he was traveling north and wanted to visit for a day. Unfortunately it was impossible at that point. We were too far away to make it back in time. I told him we would miss him this trip and catch him the next time around. (There was no warning by the way -- he called on a Friday wanting to visit Saturday and we were 1000 miles away. Yes, he did know we were on vacation.)
We arrived home on Sunday night exhausted but content. I confess I will never drive through Massachusetts again. Nightmare. My prayers for all of you Bostonians. Guess who was waiting for us. My father. He had checked into a hotel to wait for us.
Now this may sound to many of you like a beautifully blessed event. I get to see my dad and have a great vacation. Let me explain further.
My mother passed away two and half years ago quite unexpectedly. Since then my father has had some difficulties adjusting. Now he is suddenly engaged. Dad also had several health issues that are quite severe. He really shouldn't be taking trips anywhere because if compromises his lungs and he inevitably ends up with pneumonia. (Which is exactly what happened.) Layer that on top of going in for my next chemo treatment the next day. You can see where this is going.
We met my stepmother to be. She is very nice and devoted to my father. I know that he thinks he is in love with her. So what's my worry?
My biggest concern is if they get married. They both loose their benefits. Health insurance, pension payments, etc. Neither has enough to live on without those benefits. My solution - live together. Yes, you read it right. I am encouraging my father to live in sin.
Oh, did I tell my father is a deacon in the Roman Catholic Church? And his fiance is a former nun?
Underneath it all there is another scenario. My niece has become engaged. She has moved in with her fiance. Her parents are quite upset. I can't throw stones - and not because of my father. I live in a glass house in this regard. Yet I can see my sister in law's point and waiting is a viable and good option for my niece.
So one side I am encouraging my father -- a man of the cloth -- to live in sin. And the other side I am encouraging my niece to wait. While I go through chemo round three.
No wonder I want to buy a RV and drive away.

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.

Hoping for the Best

Here I am at Hope Lodge Cleveland waiting for chemo tomorrow. This is such a nice facility. Very restful and peaceful before what could be a trying day.
I have waited a long time for tomorrow. I have always known that it was going to happen. I hoped later rather than sooner. So in order to celebrate my first dose of chemo, I have come up with the top five reasons chemo is a good thing - besides the killing cancer of course.

Reason Number Five -- Savings on shampoo, razors, conditioner, hair spray, hair cuts. Lots of money to save.

Reason Number Four -- Time savings in shaving, shampooing, combing and trips to the saloon. Not to mention the time saved in checking your reflection in the mirror. Those seconds add up!

Reason Number Three -- Trying out new wig hairstyles and taking it off if you don't like it.

Reason Number Two -- For those days, when a wig or scarf doesn't work, remember bald is beautiful. And don't you forget it!

Reason Number One -- Insurance paid weight loss plan.

Finally, An Easy Surgery

At dawn, we headed to the hospital for another surgery. I admit this one really had me worried. I wasn't worred about the open heart/lung. I did not have time to worry. Nor did I have a real choice in the surgery. I had to or move right into terminal status. This surgery was planned. An option. And I really didn't want to go under again.
We arrived on time. Taken back for preop on time. Surgery happened on time. And I woke up in the surgical suite. I was out of the hospital within the hour. We arrived at 7:45 am and left at 2pm. I was so happy that they did not keep me over.
To spend the night here at my own home the night of surgery is a real new experience for me.
My pain is also very bearable. Advil and Tylenol are keeping it in check. Another real bonus. I get to take Advil after a week off it. I am proud of myself for making it a whole week!
The port will be great for chemo next week. No more IV's and my veins will be saved from chemo. It sits under the skin allowing me to shower and swim.
All in all, a very good day!

A Funny Story

Almost every day, I have taken several walks. Some just around the driveway, up the street a block or recently, around the block. Granted I move at a snails pace and babies could crawl faster, I am still moving.
Today after dinner, I stated that I was going for a walk - by myself. My husband asked if I wanted company but I politely declined. I counter offered a 30 minute window. If I wasn't back by then, they could send out the troops.
Off I went. Hands in pockets and enjoying the evening. The sky was a bright blue and children were riding their bikes. And I was alone moseying along.
A neighbor stopped to chat. I admired her new puppy and we chatted about our children. The usual, how fast they were growing; latest accomplishments and school year gossip. I haven't seen her since last fall except to wave out the car window. I joked about my 30 minute window and she laughed.
Until I spotted my daughter strolling up the street.
There goes 30 minutes!

Oh, by the way, I wore a bra for the first time. Sounds weird to some but think about where the scar is and where a bra fits. You get the picture.

Next Step

I never thought about it before but blogging (at least in my format) is narcissistic. It's all about me as my son says.
I have schedule chemo to start in three weeks. I am fortunate that the onc is opting to separate the chemo agents so that I only take one form now. The next form of chemo we will save for next time. The toxicity of the combo outweighs the effectiveness. Especially in light of the fact that that I have no active tumors. So l agree that we can go with the easier regiment and save some for later.
The form he is recommending is doxorubicin (adriamyacin). It is common for sarcomas and breast cancer. I think there will only be four cycles -- a cycle is three to four weeks. And a single day transfusion. I hope that gives me time to bounce back each time.
I was afraid - and still am nervous. But everyday I get a little closer to accepting it.
What is so wrong with loosing your hair in the summer?

Get It Together

I got a call from sister today. She basically kicked me in the but. I know that she is right so I will try. Basically she said that my pattern has been after surgery, I slowly sink into a depression. Looking back over the last few weeks, I know she is right. I have struggled lately putting on a brave face or finding the humor. Especially with this one. It was just bigger than I anticipated.
I know that part of it is the let down of post surgery. You loose the adrenaline. You loose the purpose of a date and time that you are working toward. Now, you just sit and heal. While everyone worries about you.
I hate that they worry about me. I think I am just a little too independent for my own good.
So I will blog and try to deal with my feelings here. I know that someone may read them from my family. That's OK. They already know that I am just shy of crazy - ha ha. I do have an appointment with psychologist. That will help.
I am exercising. If you can small walks and ankle rolls exercise. I breath into the stupid, asinine tube. I cough despite that I am in pain. I am doing everything I can to heal.
I just want it happen a little sooner.

Again, Home Again

Last Friday I went for a surgical followup and ended up with an all expense paid visit to the hospital for six days. My breathing was labored with fevers and other symptoms. After multiple tests, looking for a pulmonary embolism, they released me yesterday. YEAH!
I am sorry that I am not my usual chipper self. I am very tired from little sleep. What sleep I get is in the recliner so I sleep sitting up. I feel like a shit because my recovery is delayed a week. So all in all, this is a down side.
In a little bit, I will post some more and let you in on all the weird and wacky that happens in a hospital from the patients side. Especially over a holiday!

Not Dead Fred

The past week has been a series of ups and downs as I have readjusted to home. I hate that I am only able to do so little. I have been gasping for breath, bearing with the pain and shuffling from one chair to another.
Yes, that is as depressing as it sounds.
Until last night when I hit rock bottom.
My daughters were each having a rough night. My son wouldn't get to sleep and my husband was exhausted. I was also exhausted from hours of coughing.
Not a good night at all. I ended sleeping in the recliner so that I could sleep sitting up.
Today, I talked with my daughters and apologized for not being more upbeat. My daughter said that I had nothing to apologize. She likened me to Monty Python's Not Dead Fred. She sees me as jumping up and dancing instead of being thrown on the 'bring out your dead' cart.
I like that image. So tonight, while I am still struggling for breath and with pain, I will refuse to go on the cart.
I am Not Dead Fred!

Home Again Home Again Jiggity Jig

Of course it is 1am and I am blogging. Since I can't speak, I can write.

About the speaking. I am finally home from a week in the hospital. Breathless, bruised and exhaused but grateful to be home. As many of you already know, the surgery was successful. The tumor was removed from my right pulmonary vein, upper right lobe and left atrium. (For those not in the medical know, I have know idea why the right lung would hook up to the left atrium. Nor do I care at this point anymore.) They did not have remove a portion of my heart or rebuild it with a cow heart. I did not know about the cow heart before and am grateful. Moo.

The surgery was far more successful than anyone realized. I was flambayed like a shrimp -- that was how it was described for me afterwards. Ick. I am do have some nice scars to add to the parachuting/shark bite/motorcycle accident story I use on my other surgery scars. The worse part was after the surgery.

My blood levels dropped, my oxygen dropped, my sugar bounced high and low, salt levels sky rocketed and I painfully tried to walk, pee, sit, eat and just breath on very little pain meds. After only one week, I am home. Thank you God!

Except that now I have to deal with breathing in normal time without kind nurses giving encouraging words or doctors giving pep talks. I am coming home to reality.

But hey, at least I am here!

The Serenity Prayer

I just read a beautiful inspirational book about looking and loving a person's imperfections. None of us are perfect. We have flaws and errors. The book emphasized that we need to embrace the flaws and allow people to share in our grief over those flaws. When walking on the beach, admire the beauty of the broken shell as well as the perfect shell.
This is very hard for me. I want to retreat into the imaginary perfect shell. I want to pretend that life is not as fragile as I know it. I want to believe that I can go out and smile and be a whole, perfect shell.
Instead I am reminded daily that I am a broken shell. I need to reach out to all of the shells for support. That is a real battering to my broken shell ego.
I recall the beauty of the Serenity Prayer.

God grant me the serenity to accept the things I cannot change; courage to change the things I can;and wisdom to know the difference.
Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful worldas it is, not as I would have it; Trusting that He will make all things rightif I surrender to His Will;That I may be reasonably happy in this life and supremely happy with HimForever in the next.Amen.
--Reinhold Niebuhr

I Passed!

Let's Celebrate! Today I heard from the surgeon in Cleveland and I am eligible for surgery. I passed all of my lung tests. The doc may order a PET scan which may change all of the plans again. Surgery is tentatively scheduled for next Wednesday. They are going to take the tumor from the right pulmonary vein, up to 20% of the left atrium and the upper right lobe of the lung. They will try to save the middle lobe and reimplant the vein into the heart. I will be in the hospital from four to seven days. I will be put on a heart and lung machine just like a bypass surgery. They hope to control pain afterwards with an epidural of which I am so grateful since I am allergic to narcotics! Yes, I am wimp when I think of the pain.

Even better news is that I can start chemo as early as four weeks after surgery. Yes, this is aggressive but it gives me the greatest chance for overall survival.

So lift a glass of wine to me and thank God that they can do surgery! In two weeks I will be home and walking the block again (OK, maybe not the block but the driveway!)

Breathe In, Breathe Out

Testing and more testing today. Pulmonary function tests and other tests that I can't even name. At one point, I was standing in nuclear medicene wondering if I was going to set off the alarms at an airport. "Quick, down on the ground. You are carrying a nuclear bomb in your lungs."
For what seemed like hours, oh wait it was hours, I breathed in and out. Over and Over. Into all types of tubes. While people measured my input, output, capacity, strength - even how much where and when.
I pray that I passed the standards to be cleared for surgery. Then we met with the mediport guy who went over the procedure to place a port for chemotherapy. Like I said -- we are proceeding as if either one could happen.
I don't know when I will get the results. I hope sooner rathe than later. I will but the docs like there is no tomorrow. The receptionists will learn to hate me. "Oh, she's on line one again."
I don't care. I only want to move on. For at least another 30 years.

Yes, No and Maybe

It is only 9:30 pm and yes, I writing in my blog. It must be around midnight somewhere.
As of yesterday afternoon, we were ready to sign up for chemo. The questions we asked were -- Is there time for chemo? and Will it change the surgical outcome? The answer we received is yes and no. So we went to bed thinking that chemo would start by the end of the week.
Then the cute doc from NY called and we discussed my film. He completely reinforced the docs opinion in Cleveland and said he would send his mother there. I felt much better. He was concerned with chemo first and the potential for a piece to breakaway -- causing greater damage even death.
We called the Cleveland surgeon again. He reinforced the surgery alternative stating that he was working fast so that we could save the middle lobe of the right lung. The upper lobe is already gone. He wasn't sure that chemo would work. He felt this was the best alternative.
Do you see a pattern? The surgeons say cut and the oncs say chemo. Hence, the up and down of the past 24 hours.
Finally we spoke with the Cleveland onc. He says cut. He stated that it was the most aggressive option giving me the greater chance at ten more years. Or longer. Yes, it will be hell for the next year or two while I go through surgery (major heart and lung), chemo and recover. This isn't your mother's chemo - it is your grandmothers nasty, hair loss, vomiting, bleeding chemo. Shit.
So as of tonight - 9:35 pm - we are going forward as if each were going to happen. We are going for a pulmonary function test to see if I even qualify the surgery. Then we are going to talk to a surgeon about placing a mediport for the chemo.
All in all I am spinning around dizzily. Exhausted and walking like a zombie. I am desperately trying to find an upside here. A small spark of humor. A twinkle in the crapper.
Try this . . .
We now know there isn't ice water in my veins and heart like some former employees thought. It is only crap.

Midnight Questions

It is 12:02 am and I can't sleep. What a surprise I say sarcastically?
I hope to hear tomorrow from the NY docs. I am praying that they say there is time for chemotherapy. Or that they have other options for me. I am scared that removal of another lobe of lung and part of my heart will decrease my capacity that question becomes "What kind of life?"
That is the question that has always haunted me since my diagnosis. At what point do I say, enough is enough! At what point do I throw in the towel? I could go on but you get the picture - how is that for fitting in cliches? Three in one paragraph! My creative writing prof would kill me.
So I sit late at night thinking through my questions; reading till I get sleepy and praying for an answer. You never know, surprises are always there.
Besides, I choose hope.

IT'S BAACCKK!!

What I want to say tongue in cheek is - It's Baacckk! We met with the Chief of Thoracic Surgery of University Hospital today. The heart MRI confirmed that it is a tumor with full occlusion of the right pulmonary vein. The upper lobe of the right lung is nonfunctional. There is significant growth into the heart muscle. The tumor is the size of a large marble. Surgery is a possibility. Right now we are waiting to see if New York concurs and if there is still time for chemotherapy so we can reduce the surgical impact. Or if they have other options there.
All in all, the news was worse than we anticipated. The worse part is the Chief of Surgery in Cleveland is not nearly as good looking as the guy in NY. Darn. Although I have to say his credentials were impressive. He has done four or five of these surgeries before - and he operates on the heart/lung area every day. This is rarer than rare. This guy is right out of Boston and one of the best. I am not even sure that NY can do this operation - even if they are better looking.
So next week we could be scheduling open heart surgery or hopefully, chemotherapy. We hope to know soon. Right now I pray that there is enough alcohol to keep us going through the weekend. Since I am allergic to morphene, why not?
Keep me in your prayers.

An Unexpected Visit

I received an unexpected visit today. To my surprise, a hero of mine left a message on my website. She isn't probably aware that she is a hero. She left her message out of encouragement. I will be forever grateful.
In my previous entry, I wrote about inspiration coming from unknown places. My inspiration to choose hope came from accidentally watching a Nick Newscast with Linda Ellerbee. I wrote the entry at 10:30 am today. At 5pm, I checked my email and surprise, there was a message from Linda Ellerbee! I was stunned.
Her comment/message is linked to the inspiration entry so you can see the full text.
Many people don't know that I have a minor in telecommunications. I volunteered for a time at my college radio and TV station. Linda Ellerbee was the face of female news reporters at the time. She was everything I wanted to be -- smart, quick, beautiful and take-charge. I wanted to be just like her.
"I have always felt that laughter in the face of reality is probably the finest sound there is and will last until the day when the game is called on account of darkness. In this world, a good time to laugh is any time you can." Linda Ellerbee
I couldn't have said it better.

Inspiration

It has been hard for me to write the past month. I have been waiting for test results; doctor calls and schedules. My head has been somewhere else. I feel that I have been once again taken outside of myself by this cancer.
Despite the past stress and concern over what ever is in my veins at the moment, I have been struck by an unlikely source of inspiration. Inspiration comes from odd places. Apples fall and fundamental laws of physics are born. That is true of what happened to me yesterday.
I was watching Nickelodeon with my son. We caught the end of a Linda Ellerbee (I love her!) news report. She was discussing divorce and separation. Her final words struck me as inspirational not just for children of divorce but for all of us.
Her main theme was that we do have a choice. Despite our feeling of helplessness, we always have a choice. She said that "We can choose hope instead of fear."
That sentence rang like a bell in my head. I can choose hope instead of fear. Yes, the cancer may have hijacked one of my main veins but it hasn't hijacked my soul. Or my life. It has only added another level of complexity. I can handle that. I can take back control. Even if this 'thing' is a tumor there are options, treatments and possibilities. I need to keep that in the forefront of my mind. I cannot let fear rule my decisions. I cannot let fear rule my life.
I choose hope.

Keeping My Head in the Game

I have tried to keep my myself mentally active. I am not a stay at home mom. I never hoped to be. Not that I don't enjoy the time with my son but I miss the mental stimulation of work. And I certainly don't envy other stay at home moms - it is hard work!
So I started a non-profit website. www.autismtravel.org I want to travel and write about my experiences. As everywhere I go, my son goes too, I might as well write about it. As a family, we certainly have seen, done and heard it all.
So, if you are interested, take a peek at the site and let me know what you think. Keep checking back because I don't intend to let my current health situation hold me back.
I have bucket list to fill. And every item is far from home!

21 Days

And 21 days later I given myself the last shot. I am truly covered in bruises. Last week when I was swimming in the hotel pool I had several weird looks. My left leg looks like a shark bite. My right leg was covered in bruises. Fortunately, I was wearing a one piece and no one saw my bruised belly.
I am sure that someone thinks I am shooting up. If only it was so easy . . .
I also received a letter from my insurance company. This is perhaps the most difficult part. No it is not payment of two days in a bubble. They want to assign me a private nurse to be on call 24/7 - only a phone call away to assist in managing my case. She will work with us on developing a medical power of attorney and living will. She will work with us on filing the necessary paperwork to ease anything down the road in case the situation changes.
It only reminds that I also need to make funeral arrangements.
Yes, this sounds morbid and I don't intend to go anytime soon but there is a reality to face.
I could get hit by a bus tomorrow.
I could also get news that they need to do open heart surgery to remove a tumor/clot.
When my mother passed, her greatest to gift to all of us was a prearranged funeral. We only had to grieve for her. Everything was taken of. I want to do that my family. My last gift.
Perhaps a living will and medical power of attorney will also remove doubt of what will happen - ease any issues from my husbands mind.
I know that in the quiet of the night I worry about the end. What will it look like? What will it feel like? How will it happen?
Then I wake up and (if lucky) the sun is shinning. My son is ready to play. I have a house to clean and friends to call.
And the night's questions fade.

I Did It! Again!

If you read the earlier post, you know that I am in deep trouble. Perhaps not as bad as a large aggressive tumor growing in my lung -- but it feels that way. It is probably because I was lulled into the quiet of three successfull scan.
It has really bothered me. More than I care to admit to myself. In fact, I really want to take whatever I can lay my hands on and throw it. With the satisfying sound of something breaking. Damn! I can't believe this is happening again.
Ok, that felt better. I am starting to view this as free therapy!
So, I really need to look at the positive. Look at what is funny or unique about this. My aunt had a good view on the self injections. She stated that this was my opportunity to face my biggest fear. I told her she was full of shit.
Tonight was not that hard. Yes, it hurt like the devil but it was easier and faster. The bruising in the belly is really minimal. Yeah!
Another positive. Giving myself shots is certainly easier than chemotherapy or open heart surgery. Duh.
Another positive. I now know what a junkie looks like with tracks everywhere. I could spot them anywhere. I could look for a career as a narc.
I'm on a roll. Positive again. This forces me to continue to take my happy pills.
Biggest positive. I got see the cute surgeon again - and he hugged me!
Bigger positive. My personal McDreamy drove madly 1000 miles just to be with me and turn around to drive me home.
I really love my husband.

Home at Last!

Yeah! I am finally home! They released me Saturday and we made the long drive back yesterday. The final plan is simple which is so nice after discussing everything from surgery to chemotherapy. The clot/tumor is in the right pulmonary vein (at the entrance to the heart.) Needless they do not want to biopsy this area. They also can't tell from the scans that it is definatively a clot. Apparently tumor cells can stop there to grow and be covered in clot material and be difficult to read in a scan - even PETs. So I am self injecting Lovenox everyday (a low dose of heparin) to dissolve the clot. In three weeks I will scan with CT and MRI again to see if there is a change. The amount of change will determine the next course of action. Of course, I am praying for a clot (who would've thought!) and a clear scan. They talked about a shot of radiation at the spot if it is a tumor but radiation on my vein gives me the willies.

They also ordered MRI scans of the brain and spin and pelvis. Just to ensure it hasn't moved elsewhere. I asked if they wanted to scan my toes as well.

All of this after rushing me to the urgent care center of the hospital with the directions of "Do not pass go and do not collect $200". Needless they scared the crap out of me. Yes, I am cussing on purpose.

I am overcoming my biggest, paralytic fear. Needles. Self injecting. Ugh. I hate needles. Pass out at the sight of needles. And here I am trembling as I self injecting. All of you diabetics out there are grinning but you can't imagine the fear I feel. Some people are afraid of spiders - I hate needles! (yes, I am the daughter of a RN and the sister of three medical people - there is a reason I am a writer!)

So I am watching and waiting for three weeks. I am supposed to go spelunking next week in Kentucky - they said I still could go. My only orders are not get into bar fights - darn.

I spent two days on the bone marrow transplant floor. The only open room of the hospital. I have a whole new level of respect for anyone going through that. They treated me with the same protocol. Masks, gowns, full body anitbacterial wipes, no outside contact, no leaving the room, etc. Boy, I count my blessings! Three months in that room without contact - I almost lost it after two days!

My New Mantra

Today I heard an increbly moving mantra. This brave woman was talking about her insomia, meltdowns, stress and then her method for gaining control. I completely related to her. I know those types of tears and rising sense of panic that can over. Her solution floored me.
She said that she raised her fingers in a steeple pose and concentrated on her breathing. She said, and I quote, "My breathe is my prayer of gratitude for the moment."
How beautiful.

Another Anniversary

Anniversary for many brings to mind a celebration of a wedding. Another year together. That was what I thought of anniversaries as well. As of last November, anniversary brought a new meaning. I marked a year that I wasn't supposed to be here.
Yesterday marked an anniversary I won't forget too soon. This is remarkable because my memory is full of holes. I can remember smells, sounds and feelings - but forget little details such as dates.
A year ago, I had half of my left lung removed. I sent in hoping for a small procedure but ended up with a thoracotomy and lobectomy. The tumor had doubled in six weeks. I was lucky they got to it when they did.
I could feel it pressing between my shoulder blades.
I didn't go into surgery worried or scared. I felt completely confident in my surgeon and the surgical team. Besides, I had placed my life in God's hands.
The post surgery is the nightmare. My pain was mostly controlled by anesthesia for the first day. Until the nausea threatened to cause vomiting. No morphene, codiene, percocet or any narcotics. I am so allergic that I stop breathing. I went home on Tylenol.
The pain was so intense that I remember screaming in the recovery room "Kill me. Kill me." My husband said that I was whispering it and begging him to kill me. Every breath was torture. Natural childbirth was a breeze compared to that surgery.
And then they wanted me to walk. A mile around the floor every day. Without pain meds.
After the surgery a year ago, I focused on the funny side. Old men walking in front of me with the back of their gown open. Tubes coming out of every crack and crevice. Asking for a boob job while the surgeon was working there anyway.
I couldn't look at the rest without tears, depression and fear. It was more than my mind could process.
Now I can look back and marvel. Not just at my ability to survive. But anyone's ability to survive that kind of surgery. My surgery was minimal compared to friends with multiple tumors wrapped around organs, etc. I am grateful.

All in all, this anniversary is very special. The incredible gift of another year.

The Dog and The Fire Hydrant

Today in my online liposarcoma support group there was a flurry of emails concerning stress and cancer. Last week NPR hosted a whole hour on cancer research and part of it addressed the link between inflamation and cancer. In the back of my mind I have often wondered about why I have this dreaded disease. It was not my formost concern when first diagnosed. I only wondered when I became calmer and passed the crisis. Now it is a fact of my life. I only need to address the embarrassment of depression.
I have talked about the depression before. I am pills. I see a psychologist. I am in support groups. Yet there is still embarrassment and a stigma to depression. Oh hell, if you wonder why I'm depressed just look at my plate. It runneth over. And I needed help. So there, no more embarrassment.
The discussion on stress in the online support group is a different issue. Stress causes a rise in cortisol which leads to inflammation. This inflammation could trigger a genetic tendency to cancer. A theory.
So I started to think about stress. How I handle it and how I don't. The online group talked about glasses half full and half empty. I always that I was a half full person. Optimistic and laid back. Perhaps I have too many half full glasses.
All of the discussion reminded me of a conversation that I had with my daughter's friend. I asked if she felt like the dog or the fire hydrant that day.
She said she felt like the sidewalk.

I want that job

Late at night, when I can't get to sleep, I have been watching reruns of Sex In The City. We don't have HBO so these aren't reruns for me. Now I know why people loved them.
I want Carrie's job. I want to be paid for a column about something. To work from my home and make enough to afford Jimmy Cho's.
Mostly I want to have the figure that makes all of those clothes look good.
So I will settle for the blog and making this my forum. I promise to endeaver more posts. Even though this started as a means to express myself during the most stressful period of my life. I really have learned to enjoy it.
So I will dream of living the Carrie Bradshaw life.
Mostly I will dream of the clothes.

Only In The Evening

Every night around 10pm I have a brainstorm. In my head I compose the best blogs -- as I get ready for bed, lock up for the night, brush my teeth and wait for sleep. Of course, the composition is gone from my brain the next morning.
This is a tribute to all of those incredibly well composed and thoughtful brain blogs. The blog I composed on autism. The blog I also composed on cleaning the house. All of those blogs that I composed on travel. Not to mention cancer, going forward, preparing for the next scan, living life and on and on and on.
While you look a the meager postings of the past two months, know that I am busily composing late into the night.
Even while I sleep.

Happy New Year - YEAH!

Thank You 2008! I wasn't sure I would see you yet here I am!
It is funny but many times I blogs in my head when I can't get to the computer. Then I sit down to blog and nothing comes out that I intended to write. It is like my fingers have a different agenda.
I know that it has been more than a month since I blogged. My apologies. I took time off to enjoy the holiday disease free. We spent the time as a family just enjoying the holidays. We really tried to live the time as life was before the diagnosis. Every day I counted my blessings and thanked God for one more year!
There isn't much to report except that I have a job. Granted I don't get paid so it isn't a job per se. It is an incredible opportunity to use my brain and keep me motivated. I miss work but I am realistic in realizing that I can't do it all anymore.
I do have other news. I climbed another rock wall and made it much further. Most of it was with my hands and don't have the flexibility in my leg -- but I did great for an old codger!
I also started a Tai Chi class. I loved it. Meditation in motion. Just what my doctor ordered.
And more importantly, my new diet and lifestyle are underway. I am seeing very positive results so far. I only hope that I can keep it going!
The children are wonderful. My husband is wonderful.
Life is good.