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.