Archive for May, 2008

Make a wish

Thursday, May 22nd, 2008

magic-lamp.jpg

Sometimes the good news is as difficult to report as the bad news. I am not sure exactly why. I do not enjoy the highs and lows of my diagnosis. I do not enjoy what feels like drama. I have always been especially satisfied with an even keel. Things going along an expected course. When for the last 12 months nothing really seemed to halt the progression of my disease I was accepting of that. Really. I said Ok this is God’s plan. I am going to make the best of it. Now there is a glitch. It seems like the femara is actually working. Femara is not chemotherapy. It is a hormone blocker. My cancer feeds off estrogen. And as I have explained before the theory is if you starve the cancer cell of its fuel it can not progress. As of today’s visit the lymph nodes in my neck feel much smaller. Smaller than last week. Now I have not had a scan so I do not know exactly what is happening. I just know they feel smaller. This is more than my oncologist expected. She “hoped” at best it would halt the progression of my disease. But now it seems to be retreating. The real test will be on June 12th when I get the cold hard facts. In the meantime I am encouraged and comforted in just living for today.

The other side of this picture is that I have had a considerable amount of pain in my shoulder and sciatic nerve. The pain has kept me up all night at times. In tears. In acupuncture. Praying for relief. After discussing it at length with Dr. Demichele we both felt that it was connected to the femara. It causes nerve pain. This is different than muscular pain. Medication for muscular pain does not help nerve pain. She has prescribed a nerve pain medication that is non-narcotic. Hopefully, this will work. I have had a very hard time with the pain medication I have been taking lately. It has made me very tired and moody. The nerve pain meds do not have these side effects. I think if I can get this under control that would greatly improve my quality of life. I am still on zometa to fill in my bone cancer spots. They appear to be responding very well on the scans. Which is also a relief.

One day at a time. One step at a time. I am just trying to do this for today. If I think too far into the future it only causes me confusion. I honestly believe that the peace and contentment that I feel right now has NOTHING to do with this visit. I feel at peace with any outcome. I am happy regardless of how this turns out. And knowing that my life is still hanging in the balance just forces me to keep living out the best of each day.

Today I enjoyed some time with my pastor Josh. We prayed. We talked. I went to my friend Jenni and Robert’s daughters’ pre school graduation. I enjoyed that. I enjoyed my kids too. The weather. A good cup of coffee. It is much easier for me to let go of all the small annoying things than it used to be. And for that I am very very thankful.

Poems by Tucker

Monday, May 19th, 2008

img_0387.JPG
My son Tucker (14) has been writing a series of poems as part of a school assignment. I just thought I would share a few of them with you. I felt that they were very interesting/moving/telling and wise. You might enjoy them too.

Pain and Love
By
Tucker J. Collins

Once upon a year ago,
Terrible news struck my ears.
Time began to pain and slow.
Stabbed by words like pointy spears.

A dreadful misfortune struck.
A growth too much to handle.
All depending on pure luck.
Life dwindling, like a candle.

Now a year has timely passed.
I’ve learned new lessons that show
Pain and love can be amassed
By the friends who come and go.

Dedicated to my mother who has helped me to grow and become the person who I am today. It is also dedicated to all the people who’ve helped my family and I get through these times of sorrow.

What Am I?
By
Tucker J. Collins

As I whiz threw the air,
I have but one small care.
My quest’s goal is to roam
And to return to my home.

Once a weapon, now toy.
From one’s hand I deploy
Maori hunter’s tool,
Child’s toy that is cool.

Unlike sticks, I come back.
Rough outside, I do lack.
Cutting air, like a fang,
I am a boomerang!

Dedicated to Ruthie and Gina who keep
coming back, no matter what.

Sudden Revelation
By
Tucker J. Collins

Revealing the
Entrance and its
View I quickly
Entered a great
Land of sight and truth.
Allowed by a
Telling
Intuition,
Only revealed by my mind’s
Notion.

Dedicated to those who have had their eyes opened to the truth

Pangram Phight
By
Tucker J. Collins

Hello, azure eyed Tiger,
Who lives in the Jade Green Forest,
Where You buy Your pick of Monkeys
And his queer, onyx Cousins.

Great Panthera Onca
With Your melanistic pigmentation,
Fading at the Black Zenith,
Jaguar Queen, you vexed me.

Blood filled Cousins, Kindred Enemies
Pumped with Grave Hatred
We quarreled and jousted
Expecting yelps and a haze of pain.

By Inhuman Blood we duel,
Lethal Fangs pierce quickly,
But not at all in vain for
Slit Jugulars zero My Life next.

Dedicated to Clayton, who is
A little Tiger inside.

Catching up

Sunday, May 18th, 2008

catching-up.jpg

YOU ARE A BEST OF BLOG FINALIST!!! Congrats on making it to the final round and remember to tell everyone you know to head on over to www.thebestofblogs.com to vote for your site. Oh and don’t forget to enter our Exclusive Lijit Contest for another chance to win some fantastic prizes. Winners will be announced June 2nd so gather up your faithful followers and tell them you want to be one of this year’s Best Of Blogs!

Bill Beck
Project Mgr.
www.thebestofblogs.com

So I am a finalist for best mommy blog. In order to vote if you feel so inclined you go to the site and scroll down to look at the row of purple boxes that contain the finalist for each topic. I had to scroll down and hit the previous entries button. Then I found it. And ya know I voted for myself. You can vote everyday. Anyway, if you feel like voting go ahead. Its an honor just to be nominated right?

I guess I should take a minute to catch up. I am out of the habit of writing on a daily basis. I was without a computer for 2 weeks and it really makes it hard for me to get used to doing this again. While I was away I carried on an inner dialog that was pretty
“heavy”. Spiritual. Now that I am home my inner dialog is back to that inner mom thing…pay that bill, go to that appointment, don’t forget this or that. I am lucky if I pray for 60 seconds before I pass out. I have had no tea. No quiet time. Just sleep, eat, and do the mom stuff. Which is fine. I love that. But it is so different then contemplating the nature of my existence and my journey here on earth. Right?

I went to see Dr. Demichele on Thursday. She agreed that the nodes in my neck seem smaller. We discussed our next step. My next scan will be on June 12th. I thought I was going to have one the other day. But I had one three weeks ago to replace that one…whatever. Next Thursday I get my monthly dose of zometa through my port. It is doing an excellent job of filling in the holes in my spine and sternum.That is encouraging. My sugar has been gradually getting under control. It does a weird spike and drop for no reason. I t did this in Santa Fe when I was eating perfectly. What else? Kelly and the kids gave me my Mother’s Day presents when I got back. They got me this awesome picture frame that has a usb port. Basically it stores and shows all those awesome photos that Jon O has taken of us. Plus some excellent ones Kelly has captured too. I love it. I stare at it for so long just watching great photos come up. It makes me really happy. And Alec bought me an itty bitty zen garden. It comes with three little pebbles and a mini rake. I love it too. I have been saying forever that I wanted a zen garden. I just laughed when I saw this thing, it is so cute.

I am happy to be home. I have been very tired though. I got some acupuncture on Friday. Ed is now in Italy and I will not see him for two weeks. He told me to see someone else in the practice if I feel ill. I am hesitant. I like Ed. Heck I love Ed. And I totally hate people touching me. So we’ll see. My shoulder pain and frequent stomach pain may win out to the don’t touch me phobia.So I am sort of waiting to start feeling good. I am off chemo. I am on insulin. I keep thinking any day I am going to feel like the old me. But so far I still feel like the new me who seems to feel very old.

We went to Jon O’s wedding on Saturday. It was outside and the weather was perfect. Holly looked so beautiful. And Jon looked handsome clean- shaven…presentable. They both looked very happy too. I had a wonderful time. But I was too tired to even do the reception. Kelly and the 5 older kids went and had a great time. Clay and I watched Toy Story and snuggled on the couch. I am trying to just let myself rest and not be mad because I can’t do more. This is a hard lesson that I am still adjusting to. I used to just go and go and go. Now I am like one thing. That’s all I have in me. Maybe the cancer is making me tired. Or the healing. Who knows? For now I am taking it easy.

So I want to see everyone who has been asking me to hang out. I am pretty open. Except for Thursdays. Call me or text me or email me. I will figure out a good time to see you. I am very sleepy between three and five! Like a toddler I tell you. I miss many of you. And it was good to see so many loved ones at the wedding. And Naomi Landau thank you for my wonderful vacation. And Naomi Annabelle thank you for helping my family and loving them in my abscence.

I’m back

Wednesday, May 14th, 2008

tattooedbackhand.jpg

So did you miss me? I am back. My head is spinning. It is hard to even do this right now. Basically I was home for like 48 hours when I left for Santa Fe New Mexico. That is where Ori’s mom ( Naomi Landau) lives. She spent 2 and a 1/2 months in India and this was my first chance to see her since she returned from her spiritual journey. Our visit was wonderful. I spent time in quiet solitude in Naomi’s backyard listening to the sounds of the different birds. I toured the city with her marveling at the unique and peculiar architecture. I ate good food. Met beautiful people. Drank lovely tea. Ate healthy food. And experienced many spiritual epiphanies. It would be really difficult to put into words exactly what I have been going through. Sometimes talking/ writing seems to cheapen the depth of what I might be experiencing. I will try to give you a little bit of what I got from this trip.

During my trip I “celebrated” my one year journey with cancer. I say celebrate because hey I am still here. And because really for me this has been a life altering thing. Over and over during my time in Santa Fe certain lessons became more and more obvious to me. Others I learned by listening to Naomi. Some I worked through with her as a guide. She pulled from the teachings of Buddha and Krishna. I filtered them through my understanding of Christ. Universal truths became evident. The first significant one being that we must abandon hope. Hope is an expectation. To God or the universe to give us what we want. In truth this is not a positive thing. To let go of expectations and accept what we are given. To learn the lessons we are here to learn, that is true freedom. I am learning that this cancer thing is not all about me. To lead a self centered existence even during illness would be detrimental to my family and friends I think. It is very important for me to recognize that many people are experiencing this with me. Their pain and journey are important too. I am trying to not have an agenda about how they react or grieve.

More…more…more. I am set in my belief that all happiness is a choice and has nothing to do with our circumstances. If we hold out those expectations that when we get the perfect job or girlfriend or baby then we will be happy…we will never be happy. Happiness is a choice. I am happy even when I am not well. Even when my cancer progresses as it often does. I am happy I have just this day. This time to experience the sounds of birds, the ocean, my children’s laughter. And I guess for now lastly, I think we need to also set aside fear. Fear for most is a state of anxiousness based on things that may or may not even happen. People base all kinds of decisions on fear. I am going to do this or that to avoid some future pain. Ok I hope that works for you. But in truth as far as I can tell a lot of you live your lives in the grips of all kinds of fear. Maybe knowing your going to die makes me less anxious. I don’t know. I just feel like there is nothing to be afraid of anymore.

Is that too much? There was actually a lot more than that. I was in prayer and meditation for most of the week. My head has been spinning with the different ways God has spoken to me. Through people and in dreams. It was an intense and powerful week. I met some very strong and beautiful women. Women that I wanted to be when I grew up. I wanted to be wise like them. I will settle for being a little enlightened right now.

Before I left for the shore my ct scan revealed more cancer. In the old places. In some new places. I went to the beach and I was relaxed and happy. I went to the desert and got several alternative healing treatments. And well I get another scan tomorrow but all the nodes in my neck seem smaller. Much smaller. Who knows? I am not hoping for anything. I am OPEN to everything God gives me. I do not expect or fear anything.

I don’t know if you guys realized it but Jon O put up the beach photos. Please take the time to look them over. I was just so blown away at what an amazing job he did. Please let Jon know what an artiste he is. Also he is getting married on Saturday…Congratulations my love, see you then.

All my love friends. Andrea

A whole year?!

Saturday, May 10th, 2008

momjesse.jpg

So, as you may or may not know, today (May 9th) is the 1 year anniversary of my mom’s diagnosis. My mom is in New Mexico right now, and has no access to a computer, so when we talked earlier, she asked me to blog for her. I gladly accepted her challenge.

It’s hard to believe that it has been 366 days since my mom was diagnosed. A couple of weeks before we found out, I’d be rubbing her shoulders, and there were lumps. I thought they were knots, but she told me to leave them alone. It was bothering me. I think it was Monday or Tuesday night, we were laying in her bed. Clay was in the crib, Kelly was at work, she told me she got a biopsy that day. So I got a little freaked out. She hadn’t told my siblings. Just me. She told me not to tell anyone else.

I was walking home from the bus stop, and Kelly called me. Alec called me. Mom called me. Where are you? Family meeting. When are you gonna be here? I’m a block away. Just hold on a second. I knew what was going on. We wouldn’t be having a family meeting unless it was about what I thought it was about.

Within the next half hour, everybody in the room was crying. Kelly, Mom, Alec, Tucker and Asa, Bailey, and me. Clay was sleeping I think. You can’t not cry when somebody that you love so dearly, with your entire heart gets sick like this. I don’t think it would have been as bad if it was stage 1, just a lump, minor surgery, a few rounds of chemotherapy. But this is something that won’t just go away that easy. This becomes your entire life.

I think it’s been a hard year for all of us. Not so much Clay, but everyone else. I’m glad to see how many people have come closer, and disappointed that a few have gone away. Every new face I see in the house, it gives me this feeling that the world isn’t filled with really awful people who can’t park correctly and think of how other people feel ever. And when I see the same few faces every day or week or every few weeks, I’m glad.

I think as teenagers, that the twins, Alec, and I have had to grow up a little bit faster than we expected. We’ve all taken on more responsibilities. Like blogging for mom when she’s in New Mexico. I love taking care of Clay, but it seems like it’d be so much easier if mom wasn’t sick. She could take care of the baby. But then I wouldn’t know all these people that have felt some sort of connection with my mom through the blog. I feel like everybody is expecting the same from me at school even though mom is sick, so, dealing with all the school, and trying to spend time with mom is hard. I wanna do both. But, I’m doing good in all my classes this quarter! I didn’t do as great as I could’ve last quarter, but I’ve brought myself back up. Alec is finishing up his IB testing. The twins are finishing up their year, and getting ready for St. Joseph’s Preparatory School.

It’s great that even though mom is sick, we are getting to do family things. Compared to most families with a person with cancer, I believe, that we have done so much stuff. I’m so glad we got to spend last week together. It was great for Clayton that none of us left throughout the day, and it was a new place to explore. I needed time away from civilization for a minute.

It is now 12:40 Saturday morning, so should probably be getting to sleep.

Vacation…all I ever wanted

Monday, May 5th, 2008

vacation.jpg

Life’s a beach house
Our arrival at the beach house was almost a covert operation. We left Philly with half of our children at 11pm. When we pulled into town it was immediately obvious that we were the only people in Ocean City. Eileen had brought my other three kids down earlier in the day and my twins were waiting outside at 12:30 am to greet us. The enthusiasm and excitement woke sleepy Clay who then proceeded to giggle and run from room to room. That night I put everything away. I didn’t want to dig out of suitcases for 6 days. When everything was “away” I felt ready to relax. The house has 4 bedrooms and three bathrooms on each floor. As well as a full kitchen. We decided they could sleep wherever, but we were only going to use one living room and one kitchen and hang out together.Which we did. There was a lot of food when we arrived. Teachers from Meredith Elementary made enough meals for most of our vacation. That’s what we ate except for 2 pizza meals from an amazing brick oven pizza place. And one special dinner for Gina’s 24th birthday.

Happy Together
We did everything as a family. We played a lot of games. We watched a little television. We laughed.There were no computers or video games. In truth we played as a family a lot. We went to the beach. Clay spent time playing in the sand. Smacking us with his shovel. And throwing sand at us. I love toddlers! When he discovered the water he was totally fearless and spent the rest of the week running right into the cold water. We all had to save him from plowing head first into the ocean. Speaking of fearless… Tucker actually swam in the 50 degree water everyday. It was about 65 to 77 outside. Tuck dove in and body surfed the waves, telling us all how “refreshing” the water was. We walked the wet beach. We jumped when the water came in because it froze our feet. We pressed our feet into the sand. And it occurred to me that as I watched my children and husband all interacting and having fun, that this was the best day of my life.

On the boardwalk
Oh yes.The usual trappings of the shore. We went to the arcade and played air hockey. Ruthless matches that served as bragging rights for Kelly since he beat everyone except one – eyed Tuck. We played $.10 skee ball and pinball. This was one of those moments in which I realized that nothing changes. My feelings about the arcade are the same as when I was a child. My fervor about the games. Wanting to win. We did the black and white photo booth. We made silly faces together. We anxiously waited for their arrival in the slot. Nothing changes. We are all just big children with bills and responsibility. The kids and Kelly did the rides without me. They went in the evening and I stayed home with Clay. Wonderland pier was great. Kelly and the kids rode a bunch of rides. Kelly said the ferris wheel was the scariest because it was rusty and freezing at the top. The next morning Kelly, Jesse and Bailey brought Clay to do the kiddie rides. He had a very good time. His siblings did all the rides with him. But we think in the end he liked the ocean much better. I found that a relief. I would rather have a child who was excited over God’s beautiful creation than the ‘thrill” of a carnival ride.

You animal
We decided to take a trip to the Cape May zoo. Its free and very lovely. Parking is a nice wooded area and their is a trail to the entrance. By the time I got there I couldn’t continue. I was spent. Muscles burning. Pain in my stomach. I was going to sit on the bench and wait there for them. Then I saw the sign for wheelchairs. I told Kelly I needed one. I could see in his eyes that he thought I might not really need it. I assured him that I did. Alec pushed me around the zoo. Clay walked more than I did. But I was with my family.I got to see the lion and tiger and bear oh my. Clay had a blast. All of us enjoyed ourselves. And when we left I still had the energy to enjoy the ice cream stand we stopped at as well as clean up from dinner later. So what I did notice is that people do not make eye contact with anyone in a wheel chair. And I did feel sort of weird. Like should I be in a wheel chair? I am so tired from all my treatments. I have a 10th of the energy I once did. It is hard to accept these limitations. It is difficult to acknowledge that I can’t do things. I am still figuring all this out. Some days I have stamina and others I do not. If I require pain medicine I am easily fatigued. Sometimes I take a break and I am good to go. It depends.

Hello Dolly
We went to see Dolly Parton at the Borogota on Saturday night.I didn’t really want to write about this because it was really personal. But here is what happened. I spent the day staying very low key so I would have energy for the show. We got lost on the way and I stressed out so bad I was sick. Kelly was calm and I wanted to cry and scream. When we arrived I immediately began seeing young girls with big boobs in short dresses. All of sudden I felt like boobs were the hot accessory and I was the only one without them. Casinos are so intense anyway. We got our tickets and went to our seats in the 17th row. And everything fell away. The anxiety and the insecurity. Dolly was on stage in white and sparkles. Beautiful, funny, gentle, and a still strong and beautiful voice. I cried when she sang several of her songs. I love the things off her new album backwoods Barbie. I just thought she was so inspiring. I felt so fortunate to see her. Kelly and I bought t shirts. I was so happy. But as soon as we re- entered the casino area I felt sick. I just wanted to get out of that environment. We left and found ourselves “lost” again. No, we couldn’t find the garden state parkway. We took the long and scenic route back to Ocean City. I spent the hour daydreaming about meeting her. I told Ori ( he knows her manager and that’s how we got free tix)to help me meet her. He told me he was working on it. He said that he told her manager about the blog. Ori said Dolly has read my blog and was moved by it! Shut up!

Ocean breath
From the deck of the house you can see the waves roll in. I spent a morning alone early sitting and watching the ocean. I began to pray and thank God for all he has given me. I counted all my blessings. I realized that my circumstances do not dictate my happiness. I am happy because I choose to be. I see how good God is to me and my family. I let myself be quiet and meditate. I listened to the sound of the ocean lapping up on the sand. My breath in sync flowing in and out deeply and rhythmically. I felt at peace. God and I are breathing together. Even if there is nothing more than this, this is good enough. In that moment I knew that this life is enough. I know all about God from watching the ocean. Or my children showing each other love and compassion. Or my husband’s embrace and sincere smile. All we need to know about how good He is is right in front of us.

When we returned home I found some checks that people sent us. The money for our trip was a gift from a stranger who reads the blog. Tamara gave us tickets for the rides. Eileen and her family gave us the house. The teachers at Meredith gave us food. We paid for gas, pizza, and the arcade. I felt so blessed. I am eternally grateful to all of you who show your love and support for my family. God Bless you all.

P.S. We took tons of pics and will post them on the flickr account. And the weather was awesome for our entire trip. We didn’t get lost coming home and everything is already put away!