Of Paintings and Postings...........

Today we had 8 x 10 prints of these, the "Happy Apples" and "The Penny", made for sale to add to the fundraising efforts ............ We are selling them for $20 each, including shipping in USA & Canada - proceeds to go to the Leukemia and Lymphoma Society and the Small Cell Lung Cancer Association in Alberta Canada . If you are interested in buying either of these paintings, please email me and I will get back to you with the details.

Please watch for our new site: www.PenniesForCancer.com which will be coming soon! :-)

The stories behind the paintings:
Happy Apples - the painting on the left. This is a painting I did a week after Steven was diagnosed with CML. My good friend, the Teach, insisted that it would be good for me to paint - and she was right! Many good things come out of what initially appears to be a dark place - the barrel. The date, on the inside of the barrel is the date of the CML diagnoses, the graffitti on the side of the barrel denotes the tears, the joy, the hopes that we have for his long term health and happiness.
The Penny - This painting was done with my friend Penny in mind and heart. She is a cancer patient too who is fighting to get as much out of life as possible, is an incredible lady, a wonderful friend, a great inspiration to me. The almost-hidden smiles in odd places tell of the strange and unusual places we find joy, the big smile is simply for Penny, for her courage, strength and tenacity, the spider is because there is always a 'bug' in life - that's just the way it is, and the penny in the blue bowl is that crazy, whacky, wonderful and brave lady - Penny!

I am hoping to add a third painting to this series....... not sure what it will be yet, but I know that it will be something that will make someone either laugh or just shake their head and keep their thoughts to themselves! It's really so much fun - especially the looks and laughs from the rest of the group when I add that first bug or smile to an otherwise semi-ok painting. They are all getting to know that I am going to "mess up" the painting and some others in the group are adding bugs to thier paintings too! Sorry Teach! Thats what its all about - enjoy, be different and then laugh at yourself and enjoy the laughter of everyone else too.

I posted the fundraising trip plans on three Leukemia boards or new groups today. Its kinda scary putting it all out there, but it makes us more determined to make this a raving success. If any of you have any ideas of how to help make this really good, please let me know! We can do with all suggestions. Follow the RoadRunnersUSA link at the left of this page to get to that site.

What a journey this is turning out to be! Steven is great, busy with the motor-swop in his 240z and has a wonderful support group. My family and friends are fantastic and Frank is just wonderful with all of this - egging me on with a spark in his eye, wondering what I am going to do next. He cannot wait for us to be out on the road again and we go and sit in the motorhome for a little bit every now and again - it feels soooooooooooo good.........and we are slowly adding things to her cupboards so that we will be fully packed and ready to go in a couple of months.

Life really is amazingly wonderful - it has become so much fuller and deeper since this all happened to Steven.

The Road Runners USA site will take some time to get up and running. There are some things to sort out and then that one will be the main fundraising and trip information site, leaving this one for Steven updates and general stuff. I hope it does not take too long........ but you can follow its progress from the link on the left.

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The Penny

Penny.
This is yours. For the wonderful things I have learned from you. For your courage and strength. For your sharing and the laughter.
Just 'cause you are one heck of a lady!

Love. Compassion. Giving and Hope. This is life. And the smiles - even in the oddest of places.

#2 in my C-Series of painting........

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And now?

So everything is ambling along just right. The blood counts are looking good, the doctor is great and best of all - Steven is feeling and looking really good. A bit of fatigue - but hey, that's a small price to pay for all this...........even if I do say so myself.

As is right, everyone is less 'freaked out', everything is calmer, the phone calls are dwindling and the the worry in voices is dissappearing. This is still a disease that is really scary, but even with this happening, life is determined to move on, as it should. It's a bit like varnish - put a thick drop the floor and with time it will smooth out - softening and thinning at the edges, almost becoming undetectable, except for a small bump. This is what it feels like right now. And one never knows when that bump will trip you up! Ok - I am sure there is a better way to describe this - but, for now, you get varnish. :-)

The last two months have been so intense and Monday was such a relief that I found it difficult to settle. There is nothing to actively do regarding the CML, very little point in worrying or even being too concerned until the next test - and then I trust that that one will be just fine too, so there is little value in even thinking about that one too much at all. Right?

So that leaves what? A bit of a blank hole. A space that feels like it should be filled. I always thought that if someone had cancer, it would consume everything else. And it did for me - but now that the initial scare is over..............what? the worry must go away? Must change? must what? How can one not be worried, how does one worry only a little bit about your child having cancer? I don't know, and it will probably take a few days to get used to this wonderful and confusing space of not having to be terrified.

Ok - the funny picture now in my mind is from the Pink Panther movies when Inspector Clueseau never knows when he is going to be attacked by his man servant. It's going to be that back-seat anticipation that I will have to get used to, and I know we will all deal with it if that ever happens......... I guess it will take time settling into that 'new normal'. I think maybe the trick would be to take the "worry" out of the equation and put in 'watchfulness', 'awareness'. Or maybe just a really good nights sleep would work just as well.

Tomorrow will be better and if it is not, I will stalk, not walk, down the road until it does get better! Dogs watch out.............. I have been doing some reading on what stress can do on a deep level in our bodies and its amazing how much stress affects all aspects of our makeup. Its this that really makes me want to de-stress and especially to get to a space in my mind that is more like the spread-out varnish.

Day-after-tomorrow: It got better, much better......... :-)

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New Day, New Doctor

Doctor J says that Steven should worry more about global warming than CML at this point!

He did get serious right after that, making sure that Steven understood clearly that this was not something to be 'let go' and had to watch it, and his reactions, carefully and continuously.

What a difference! He sat with us for as long as we had questions to ask, he actually answered them in totally understandable language... he joked, was serious - this doctor connected........ He went over terminology and explanations, results, he asked questions, listened to Stevens chest and felt for the spleen - all with his mind in the same room. At no time did we feel rushed, stupid nor did I feel like I was over reacting by voicing my questions, concerns and fears. Nothing was brushed off or glossed over. He made sure we understood what he was saying before moving on.... I am not sure that the word I am looking for is 'comforting' or ' comfortable', but he definately gave me the feeling that I could breathe again and that things were still heading in the right direction.

I find the pressure building inside me a day or two before each blood test, but it was even more noticeable this time because of going to the new doctor. Thankfully there was no need at all. We got lost on the way and had to call them three times for directions......... for some reason we were looking for a smaller building - it was not. There are real people answering the phone there, not an answering machine and everyone there is so calm, nice and relaxed.

So far Steven has had literally no side effects, nothing........... his spleen is totally normal too. He is scheduled for blood work every second week from here on and can do that at a local place on a Saturday or Sunday, helping along with the problem of losing work hours..... It looks as if he will be doing these bloods at the place he first went to when he was diagnosed - back to Chuck and crew! :-)

It was great just sitting and being able to ask questions and get answers! He also recommended that Steven not look to do the bone marrow transplant, saying that there is no reason for it at this stage at all. He says that the "graft versus host disease" that can occur is absolutely awful. So we all agreed that Gleevec simply will carry on working....

While we were there, we noticed a room where a good few folks were sitting getting chemotherapy. I have to tell you, it makes one SO grateful that its CML.......grateful for Gleevec....... and grateful for all those people that donated, worked and helped so that the research and development could happen.........and Steven can have a life........decidedly grateful that Steven was not among those getting chemo. Start seeing a circle here? It always seems to come back to how fortunate we are and just how important it is to Pay Forward.........

Ok, so I am having a good day.................. may it last forever!

Blood Readings:
WBC: 6400
RBC: 4.04
GR%: 76.4
HGB: 12.9
HCT: 37.3
RDW: 15.8
PLT: 142

Nothing dramatically outside the 'normal range' - getting really close the the first step of remission...........

Thanks for all your Yeeeehhhhhaaaa's and Yippppppeeeeeeee's. They all make for a really good day.

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Letting go and "Just Being"

Steven and Laura have gone up to Gatlinberg to rod-run, where all different cars are on show. He has gone there every year since he was old enough to drive. This year he will not be driving his car in the 'parade', but I am sure they will have a blast as they do every time. It is lovely to see them continue leading life as normal looking happy and excited.

So they stopped off to say goodbye this morning. This young man of mine has dealt fantastically with the CML and everything else in his life - yet I found myself asking him if he had his Gleevec! And I so wished I had not, it felt one step short of asking him if he had his toothbrush or underwear..... Sometimes its just so difficult to let go, especially that I am still getting used to the fact that he does not live here anymore.......

Those first few days after the diagnosis, (should that be in upper case?), I really had no idea how to talk to Steven about him having cancer. It was the only thing on my mind, but was it fair to only talk about this to the exclusion of everything else every time he came near? It was so difficult to even try to think of anything else that even came close to being important enough to talk about. Every time Steven came in the door or called, I wanted and needed to drill him about how he was feeling, what he had eaten, any side effects, and 10 million other questions. I am sure there were times when the "oh mom!" reaction wanted to kick in, but he has been fantastic. He answers my questions, tells me how he is feeling. He is just so 'cool' with my low-key freaking that it has helped so much to put my mind at ease and I am sure this makes it so much easier on him too.

Early on I asked Steven to tell me if he feels sick or has reactions to the meds without me having to ask him all the time. I figured that if I knew he would tell me, I would not have to keep asking him and we could possibly get to that 'new normal' state faster. This has worked fantastically so far! He has been fortunate in that he has had virtually no side effects, has color back again and his energy is increasing too. It would be so much more difficult if he did not share these things with me. It would worry me more if I had to guess at the answers and feelings going on inside my child.

The truth, good, bad or ugly is so much easier to deal with than not knowing or guessing or trying not to ask but having that worried and scared feeling everytime you see your child. I am so fortunate in that Steven understood this immediately - ok, I had to threaten to beat him, but only once...

Even though this journey has been so very short for us so far, I have met some amazing people online through the boards and blogs and news groups (yes! I now know what an 'ng' is!) that have already changed my life in such a positive way. This is a tremendously scary road, but those others that are also walking this road, and other cancer roads, have made me realise that my life was almost 'empty' before this. Not empty in the traditional way of empty or pointless......... it just seems so much fuller now, in a very good way.

Frank is picking up most of the work in the shop these days while I work on the different aspects of the fundraising we are wanting to do. I am busy trying to fix up the RoadRunnersUSA blogsite ready to change the fundraising over to that one and get serious. We have registered with the Leukemia & Lymphoma Society as Team Road Runners USA - please register to walk with us if you are in our area, or go to our site within the Leukemia & Lymphoma Society and donate - that link is on this site too, or search for me as a participant - Annie Baggett. If you are not in our area - register and walk in your area - you can and will make a difference......

Oh, and that rose bush that attacked me the day before The Diagnosis? It's filled with the most beautiful red roses! I pass by it every day when walking to the shop and I remember that day when I never thought I would smile again..........When it stops storming around here, I will take a photo and post it here.

Monday we will get to meet the new doctor. Its only been two weeks since the last CBC, but feels like months.....I am going to "just be" until Monday comes.

The other thing that has worked out well. When Frank has his 'heart-scare', we got little keychain pill holders and put a few nitro pills in there - just so we would have them if we ever needed them. We have not - thankfully! So we gave them to Steven and Laura to put a gleevec in them so that if they are out and get spur-of-the-moment plans, they will not have to go home first or not be able to participate. Steven says this has helped out a good few times so far.......... it helps normalise life in a small way. Just thought I would share that.

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From the "outside"

I am learning that there are many, many people out there that are and were feeling exactly like I was when Steven was diagnosed - lost, empty, terrified and not knowing how to go forward.

My whole world changed and I had no clue how to deal with it. I felt selfish that I was thinking of myself, it was not me that has this cancer! I felt selfish that I could not think of other people's problems right then, or for that matter anything else at all. I think that it was very fortunate that Steven had just moved out of home - I am sure I would have, at the least, smothered him or really put some more strain on him by reacting the way I did right in the beginning.

It is important that we who are "on the outside" get to hear and know that our reactions, feelings and worries are totally normal - that its ok not to cope with it - and that not dealing with it, is in itself a way of dealing with it. It is not easy and sometimes I wonder if it is not emotionally easier to be the patient......... my final verdict is out on that especially since I am definately coping a whole lot better thanks to family, friends and so many out there that I have not even met.

They have all helped me see that my reactions and feelings were and are, normal. I hope that I never get cancer, unless God listens to my bargain and takes it from Steven and gives it to me......... Then I guess I will know who has it 'easier'. Is it normal to use that word in the same paragraph as the word cancer? Is it not totally crazy to admit that Steven has "the good cancer"? A new world, a new normal. Yes, Penny, that new normal is becoming clearer.......and it seems ok - so far. Reading the stories of other people in my situation has really help so very much. I wish more people who are the caregivers, parents and partners would share their stories - it helps us cope better and thereby helps the cancer patient too.

After the first two weeks of definately not coping we decided that for everyones sanity, I needed to get on some anti-depressant, even just short term. So I dug out a couple of bottles of samples that I had saved over the years, and started taking them. I have never been on antidepressants before and never felt the need to - but this just floored me! So, one a day - three days running. I was doing pretty good! The fourth day I forgot to take it until that evening and was feeling fairly low so swallowed that little 'magic pill'. I tell ya - it was only 30 minutes and I was doing just great - smiling, laughing and actually thinking about more than just CML..........

As I realised this, I started laughing at myself. 4 days! No way was any anti-depressant pill going to work on me that quickly. I was fooling myself so thoroughly - so I stopped taking them. And I am fine. I am not recommending that other people do this - I am just a particularly stubborn person, have dealt with a good many issues without this type of help, so far, and it seems as if it is working for me. Now I walk. And kick stones along the way. It helps me more.

And this fundraiser................. this is one of the blessings we have been given - apart from seeing Steven doing well, of course!

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Changing Doctors........

So we decided to change Steven's local hematologist. I called and explained to the doctors nurse that we wanted to change. She said she would refer him to the new doctor - but made it obvious to me that she was not happy at all about this. But hey - all you people on the boards gave me the 'oomph' to push through with what is right and I insisted.

So earlier this week, I called the new doctor to see when we would be going to see him as we had heard nothing from them. They did not have Steven in their system and said I had to go back to the previous doctor and get them to phone a referral through. Feeling a bit like a ping pong ball, I again spoke to the nurse/secretary there. She said that they would not refer him to another local doctor. When I asked what I was to do now - her response was that Steven was no longer a patient of thiers as he had been told to collect his paperwork on Friday and had done so and that she could no longer help me with anything. And that under no circumstances would they help him get to the new doctor by making a phone call referral to a local hematologist.

I was good. I simply said goodbye. The way I figure this is that the doctor has CML too - he has enough problems and if this was the best way they could deal with a kid with cancer, they had bigger problems than we had! So I let it go. My teeth are a little bit shorter from the grinding and another gray hair sprouted - I felt it! But hey. Life really is too short .......

So I called the walk in clinic that Steven was seen at when all this was originally diagnosed. They had been calling him every few weeks to check on him and I was fortunate enough to catch and talk to the doctor that treated him then. What an amazing group of people they are. I told him our story about the doctor, gave him the name of the new one and within 10 minutes he called back with an appointment time, referral and all done! Thanks Chuck.............you really made my day! Its people like you that really make a difference.

So on Monday we will go to the new doctor and get the ball rolling again. Here are Steven's blood counts from the last test done on 5th April:

WBC - 4.7 ---- :-)
RBC - 3.55 ---going up - good!
HCT - 32.8 ---going up - good!
HGB - 10.7 --- going up - good!
PLT - 154 --- in normal range :-)
ANC - 3.7 --- in normal range: :-)

Steven looks really good. I can see now in photographs just how pale and worn out he looked before - its such a pleasure seeing him look better. It is difficult to see him looking so good and think that he has this cancer - the two just don't seem to go together. Laura was saying the other day that Steven thinks there has been a mistake made and he does not have leukemia after all! Its wonderful to see them laughing and talking about this, seeing that he is serious about taking his meds, doing things the right way.

They will both be walking in the Light The Night Walk at Coolidge Park Chattanooga on the 21st. Please plan to join us, there are walks all over the country.

And my youngest daughter, Joleen, joined the Marines. She is at boot camp at Parris Island right now. Lots of thoughts going her way too......

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Paying Forward

If no one had made the effort to donate, run, walk, fundraise or care about cancer research - Steven's life expectancy would be a short few years. But people we don't even know raised money that helped make it possible for the much needed research and development with this disease. It's only because of these people that Steven has this chance to live a full and normal life.

Up until very recently, I felt extremely helpless in the fight against cancer. In between all the things I learned about CML, I learned that there are amazing people with amazing stories and amazing courage. I found people who care enough to give time and effort to people they don't know, people who comfort, cry with and laugh with others that are feeling so lost and scared. I have met so many wonderful people who are already making this journey a very exciting one for me, despite the obvious worry and concern we all carry. I learned how to feel power-full, not power-less!

We found a way to Pay Forward. We will fundraise for the Leukemia & Lymphoma Society with the hope that one day there will be more cures than there are now; with the hope that some family that is in desperate need, will be helped. This is one way we can stop that awful feeling of helplessness. I already find myself sleeping better, calmer and more able to deal with this illness in Steven.

We never planned on having to deal with cancer in the family. We never dreamed, or "nightmared" (So? I am allowed to make new words!) that it would happen to any one of us. But it did. One out of three people will be diagnosed with some form of cancer in their lifetimes. I look around and wonder which three they were referring to. My three kids? Are the other two now "safe", or was it Steven, Frank and I, or my sisters or mom............ get the idea? We don't know who will be next and we don't know what help we will need.

This 'paying forward' idea (and thanks Debbie for that perfect description) gives us power, gives us hope that one day dealing with cancer will be a whole lot easier and manageable and that the fear won't be as awful or real. It gives us hope that even more research will lead to better treatments and even cures. It gives us the power to truely fight cancer. Remember I mentioned the powerless feeling us sitting on the "outside" of cancer have? Paying forward literally gives us the power to help others live!

Everyone that has ever donated for the research and development of cancer cures have a direct hand in Steven living and his future - what power! We don't know how else to thank or honor them all, except to follow their amazing example as best we can.

We are driving the motorhome back up to Alaska later this year, and will be using this trip to raise even more funds for the Leukemia & Lymphoma Society. We are hoping to get "pledges per mile" and even more donations. If you are willing to help with this, please email me.

Please help us help everyone who is fighting cancer and who will be fighting cancer in the future. This is not a drive to raise funds for Steven. All donations go to the Leukemia & Lymphoma Society.

The links on the left of this page will allow you to donate, to sign up to walk with the Light The Night mission on September 21st and to help fundraise for this very worthy cause through the Leukemia & Lymphoma Society. There is also a link if you would like to email me.

If you are not comfortable donating online but would like to help, please send your donation, made out to the Leukemia & Lymphoma Society, to us at:

8794 Dayton Pike
Soddy Daisy
Tennessee, 37379

Thank you in advance..................
Annie and Frank

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Walk the Walk.........

So much good has happened since I last wrote. Steven is doing really well and its simply awesome to see him with color in his face. Yes, he still works his full time job and is going to be going to college later this year as well. We are in the process of changing his doctors for a variety of reasons and hope that we will all be more comfortable with the new group. Time will tell. One good thing is that they are closer to where he works, so less time will be lost from work when he goes for the blood tests. Hopefully we will get to meet with the new doctor early next week and more regular testing will be underway.

We have joined the Light the Night walk here in Chattanooga that takes place on Thursday 21st September this year - there will be lots of information coming your way regarding this. Hopefully you will all be encouraged to either donate to this Leukemia & Lymphoma Society for more research and to help families in need or walk the walk with us. I will send you all an email outlining the Big Plan to make this an amazing fundraiser and with details on how to join our team, walk with us and help with us. Be patient - it might take a few days still - there are many aspects to iron out. Note that the fundraiser is NOT for Steven, but for the Leukemia & Lymphoma Society.

I am learning the benefit of walking and am now up to just under 2 miles each morning, and push myself hard enough that I even break a sweat in that short distance. My knees are complaining a bit, but I see some of the people walking that track, and I have to keep going. Besides I am starting to enjoy it, although I have to close my eyes and push myself out of the door some mornings.

All of your support, phone calls, emails and guestbook entries are wonderful. Thank you!

Also, a really big thank you to my new online friends - the emails, the e-handholding, encouragement and friendship is simply wonderful ........... you are in my heart and this hug is for you......
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YYEEEEEEEEHHAAAAAAAA!

I was not happy with the month long wait till the next blood test, and Steven looked tired and worn out which must get terribly frustrating for him and I felt sorry for Laura with him being so tired all the time, and it simply ruined each day for me seeing my son looking like this! So. I called the doctor this morning while I was out walking, spoke to his nurse and told her that I felt that he should have another test - she agreed. His red blood counts were a tad low last week.....

And he called me with the results ........ wonderful news! Most of his counts are in the normal and correct range, the others are close! There are no "definitive flags" (things that normally worry me!) and the word "abnormal" is so obviously and wonderfully absent from the entire report!

It is totally amazing how this improved my day - I found myself feeling light, (despite the fact that I have still not managed to lose the determined pounds) smiling and laughing so much more all day long - I even played some games on the computer instead of the almost addictive research I have been doing since this all started. Then Steven came by to pick up his mail and give me the blood report - I pour over them like a starving person, disecting each reading and checking and rechecking online what it all means - but today there was so little to do!

Wonderful. And a really, really special bonus..........Steven had great color in his face - the first time in what feels like absolute ages. I hope this report has made a wonderful difference in his day too. I cannot imagine the worry and thoughts going through his mind - I can only guess at them, knowing mine.

We trust that this pattern continues in this wonderful way. Thank you all for your wonderful support - I know that its scary for you all as well.

Steven - we treasure you, Laura - you are a star!

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What Cancer Cannot Do!

I found this on the web tonight - they are not my words but I love them and thought I would share.........

Cancer is so limited.....
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

x

Another one I found - it definately earned a smile.........

Sir, what is the secret of your success?
Two words.
And, Sir, what are they?
Right decisions.
But how do you make right decisions?
One word.
And, sir, what is that?
Experience.
And how do you get Experience?
Two words.
And, Sir, what are they?
Wrong decisions.
:-)

XXXXXXXXxxxxx

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