Tuesday, February 26, 2008

Over the river and through the woods...

Ok, not going to my grandmothers house today, but isn't that a nice thought?

It's sad I'm not heading to either grandmother's house today for a couple of reasons: one... is that they both are enjoying a garden somewhere in heaven about now, and two... I'm headed to the hospital in a few minutes for a long day of tests including a bone marrow biopsy.

Yep.... it's needle time. Let me just say, the word 'needle' isn't sufficient to describe something that can go through my entire 'backside' and puncture bone. I digress.

Today is the 'three month visit' to check that the medicine is really working. Hopefully the number of "Philadelphia +" cells is dropping down towards zero from 100%. I'd take a big ZERO on this test! If I hit zero, which is unlikely, I am treating myself to a big bowl of mac and cheese! I know... the refined tastes and cravings of a southern girl.

Yesterday was so frustrating because I hit so many walls and lost so much time. Files I worked on 'disappeared or crashed', I found out something I was working on was already updated by a teammate and distributed (but not to me) so I am wasting more time, and fights with insurance and mortgage companies continue to test my patience. I feel like I am crawling through waist high mud and getting no where fast. It's very discouraging and not the attitude I wanted to have going into this day of tests.

What I had hoped for was a feeling of accomplishment under duress, calm in the midst of the storm, confidence in the face of uncertainty. Let's just say I don't have any of that this morning. I would rather stay here in bed with the dog all nestled in beside me and sleep the day away. I ache already with bone pain, I have fever, I'm so frustrated and feel unproductive in every way. ugh.

It's really time to go, and of course who wants to be late for this date!

Thursday, February 21, 2008

Feeling Everything

Here in Houston the weather has been a bit damp and cold at times. It reminds me of when I lived in London. Only difference is now I really 'feel' the cold and damp. It's not age (ok maybe) because I ache in the same areas I get the CML bone pain (hip and upper leg). Other CML patients say they ache there too as that is where the 'action' occurs fighting the leukemia.

While I feel better, I do seem to have a fever most days. The fever isn't high enough to go to the hospital as it stays just below 100.5. However, I did have the up and down fever for 10 days and last Friday went to the hospital after talking with the research nurse. All the xrays and tests turned out well. In fact my blood levels are 'almost perfect.' The PA (a different one than the kale day) was impressed that the levels were so good. We talked about the 80% raw food etc. and she asked lots of questions. In addition to all that blood goodness, I lost 5 more pounds since the last hospital visit. Seems nuts and greens agree with me.

Each day I have a little bit more energy. It's like the sunlight, as we gain a few more minutes each day, I gain a few more minutes of energy. We even went to the movies this week! Staying up until 9pm has been a stretch for me for some time, but I am staying up as late as maybe a seventh grader now. haha.

Lili and I have shed more than a few tears in the past few weeks. Sometimes we don't talk about cancer at all, but some days it's everywhere. Lili struggles with her prayers that don't get answered. My response was "Don't feel lonely on that one. I don't know anyone who handles unanswered prayers well." We went on to discuss the differences between God and "Santa Claus." Seems obvious I know, but the concept of God as a dispenser of answers to prayers needed some attention.

Lili asked "If it's important to pray, and prayer changes things, then why are my prayers not answered?" My first response was "who knows?" Then I remembered that I am the parent and should be 'helping' with this dilemna. As Lili recounted many of her prayer requests and how many haven't occured, we both cried. There wasn't much I could say about 'why God seems to answer some prayers and not others.' I quipped it was something about a parent's perogative. She didn't understand and frankly I don't either. Perhaps that's one of those questions we get to ask the 'Big Guy' when we are hanging out in the afterlife?

I did try to explain that we all bear the consequences of our own actions, as well as the decisions and actions of others--even people many generations ago. (See environmental damage, or Middle East conflict for more evidence on that topic.) As we went through some of Lili's 'unanswered prayers' I tried to link what happened to her to the actions of many people. Then trying to explain 'free agency' and the power to choose we talked about how God gives us the ability to make decisions for ourselves as individuals and as communities. Sometimes the 'rights' afforded humans in different countries don't recognize our God given freedoms and responsiblities. Nevertheless, we still bear the burden of freedom of our own mind and our own decisions. Lili and I cried again over all she has lost and endured due to the unwise decisions of others. She is having a hard time with how to focus on the future realizing that everything, and everyone, can leave in a moment. She says she thinks it's unfair for her new mom (me) to have cancer and maybe not be around. What's a mom supposed to say to that?

My response to the past few weeks of 'learning with Lili' has been to try and focus on what can I do today to heal relationships, mend hearts, and create peacefulness and calm. Some days I totally suck at it. Still Lili and I keep trying to deepen our friendships, clean out our home and our lives of things that distract us from what is really important... our relationships with others.

Living life to the fullest takes courage and I think more than a few tears from time to time. Truthfully, until recently I only seemed to really cry with just one of my friends and he isn't available for my crying jags now. I am hoping that the tears of the past few weeks turn winter into spring and pain into laughter.

We keep praying and trying...

Thursday, February 7, 2008

My Bucket List...

Come on, you knew it was coming. As soon as I get a chance to go to the movies I want to see the movie "The Bucket List." It's about two guys living out the things they want to do before they kick the bucket. It stars Jack Nicholson and Morgan Freeman. How I would love to have dinner with those two guys!

Anyway, I have always had a list of things I wanted to do in my life. Several years ago while on a trip to Amsterdam I made such a list. I found that little journal recently and many of the items remain undone. There may be a space limit on a blog, so I will just share a few items with you.

1) Be a guest on the Mike Douglas show, or the Tonight show with Johnny Carson. Now I suppose it would be Oprah?
2) Make a movie of my life, but first live a life captivating enough to make into a movie!
3) Design my own home that is very comfy for big partys and small family dinners, and has a 'dishwasher' and a 'walk in closet.'
4) Be in love for at least four seasons (consecutive seasons would be nice)
5) Have lots of kids (or two because college costs so much)
6) Create a place to be creative... a studio filled with light and space to make stuff
7) Write a book
8) Meet Jonathan Winters and Robin Williams because they make me laugh till I cry
9) Have an amazing flower garden with a hammock in the middle of it
10) Create 'safe havens' for kids in dangerous neighborhoods (like the Power House in Baltimore)
11) Provide micro loans, or project lending to single parent families trying to create businesses
12) Bring peace to the Middle East (ok... so I've had that goal for awhile, but I had a hard time with Hebrew and Arabic)
13) Have someone ask me out on a real date for Valentine's Day
14) Go to a live concert once a month for life! Wow, can you imagine?
15) Go to a yoga, vegan spa in some place really amazing
16) Attend Sundance Film Festival and have dinner with Robert Redford (I didn't say marry him, just dinner. Don't be jealous.)
17) Be the Ambassador to the 'Inner Cities' of the United States
18) Fund music programs in poor neighborhoods
19) Sponsor a team of big brains to design cars that don't need ANY gas (yes, I do live in Texas at the moment)
20) Meet a man who really loves and cherishs me
21) Take photographs around the world of ordinary people doing amazing things at regular jobs
22) Collect the sacred stories and soul wisdom of regular folks
23) Create a bio dynamic farm/ranch with a big garden, fruit trees, happy animals and lots of space for city kids to come visit.
24) Be beautiful in every way
25) Get married to a guy who loves me and my family, and wants to have fun growing old together
26) Be debt free
27) Write and produce a play
28) Produce a huge concert that inspires people to VOTE
29) Write a song that makes millions of dollars to plant more trees in struggling neighborhoods
30) Have enough time each day to call and check in on each person in my family (whew that's a phone bill!)
31) Teach geography to kids and make it FUN!
32) See someone being born
33) Sail in New Zealand
34) Make my own paper
35) Watch the sun rise and set on all the continents
36) Make out at the movies
37) Run/walk a marathon (Geez, and I'm tired just thinking about it)
38) Preach to an "Amen and Hallelujah" congregation
39) Really learn how to forgive and how to accept forgiveness
40) Reach my goal weight of 170 pounds
41) Make a labyrinth
42) Grow my own avocado tree (come on now, you wish you had thought of that one)
43) Learn to dance (not the white girl kind, the real rhythm kind)
44) Sing the blues with the queens of the blues (too many to name, but they know who they are)
45) Have $100 a day to just give away to someone who looks like they could use the surprise
46) Design a restaurant that makes folks want to eat healthy
47) Learn how to be an Imagineer (ala the Disney Imagineers)
48) Create old folks homes that are so cool they soothe the soul of the aged and inspire younger generations to visit. (If I could just rid the facilities of that bleach/urine smell it would be a huge plus)
49) Inspire Americans to adopt older children who live here in America
50) Insure that every child has a safe place to call home

Well that's the first 50 goals. I sure hope this chemo stuff works as I have lots more dreams of journeys and adventures.

Send me your bucket list! Email me at sionito@aol.com.
Peace baby... it looks good on everybody.

I went down, down, down...

...And The Flames Went Higher
  • As we approach Valentine's day that quote could mean anything. Alas, it ain't so. I chose that quote because my PCR results are down (which is good), but my fever is up (100).

  • My PCR number is 3.5 and not the 0.000000 I had hoped. My previous PCR number was 35+, so I thought a 3.5 sounded pretty good. Then the PA said, "well a one log (one decimal place) reduction is the margin of error in this test." So, that means I may not have had any reduction at all if the test is just wacky. It's all about the trends or movements in the tests. I have a bone marrow biopsy/aspiration and PCR in three weeks. We will know more when those results come back.

  • The other blood markers are good. Thank you dark green veggies and vitamins.

  • During the past week I have been very sick to my stomach in the middle of the night. The side effect is odd since I don't think I had it during the first go round with chemo. However, the acupuncture seems to be helping with the nausea and fatigue. Now I need something to knock out the fever again. Blech. I am tired of being tired.

  • I am grateful for the medicines and the support. I am just not loving the isolation that comes with being so tired. Some days I can do what the 'unsick' folks do, but then I pay for it the next day when I can't do anything. I want to go out and do things so I can be with people. When I'm out, I don't want to look sick or be sick. The kickback comes when I am useless later from being overtired. Cancer sucks. I think I will choose not to have it.

  • In other news, I spent the morning on the phone with the insurance company going over outstanding bills (about $30,000 worth). I have been approved for the bone marrow transplant per the insurance comapny anyway. They agreed to reiew all the 'not approved' charges and get back to me. So far it's good news and I will take it as a win for today (knock wood).

  • There are lots of good things happening. We received some great cards, emails and donations. We are cleaning out the closets, scrubbing down the house, and getting rid of tons of stuff. I want to feel good about coming home and having a peaceful space for me and Lili. As long as there are so many things that need to be done/fixed/repaired, I feel torn as to what to do next. Most of the time I just finish making dinner and go to bed. I am better, but I feel like I'm missing out on the life I really wanted. More on that topic later.

Don't forget to 'speak out' and leave a comment!