Saturday, November 25, 2006

laughter - should I?

I had to laugh tonight reading Jon's blog - its so true - there is a moment of truth at 'new meetings' that can turn the conversation silent........ "How are you? Fine. And the kids? One a US Marine (a smile), one married and now pregnant (another smile) and the other dealing with leukemia.(.........)" They often don't gulp loudly or more than twice, but I see the throat work, that hunted deer look in the eyes and can almost hear the thought "what the (*&^% do I say now??" Almost always I am already in there, lightly saying that its ok - he is doing well and all will be fine........ and oh yes, how are you?? Depending on the look on their face, I tend to burble a bit more, giving them time to gather their beads of sweat off the forehead and form an answer. These days the doglet can help make the conversation change tack if they need it to.

I should not laugh - but I do and its not out of mean-ness, but almost from relief that there are people that are not having to deal with cancer in their lives and therefore really don't know how to respond! Its a good thing to see. It's not that people want to avoid the situation as much as I think it is that they literally don't know what the 'right thing' is to say. I was one of them once upon a long time ago...... before cancer was here to stay.

I think the most surprising and sad thing is the number of people that respond with their own cancer story - one that they, or their parent/child or friend is the main character. So many of those people - too many of us. Way too many.

How Steven handles meeting people of pre-diagnosis, I am not sure. I will ask him one day, but I do know that cml is not as much in the forefront for him as it was a few months ago. Thankfully.

Tonight I will still savor that good moment of someone out there understanding........ and be thankful for that, even though it is bred in their own rough road.

Love and light to everyone reading this.

And now...just burbles...

Long time no write.......... Steven is doing really well. He looks better now that he is back on day shift and seems to be coping with college classes very well too.

Although everything is looking so good with this disease and its control, I am finding a big hole in my life. This life of mine was wonderful before the leukemia diagnosis, then it was filled with the scary stuff, the terrifying stuff, the wonderful meeting of amazing people, the travel and more people. So much excitement, so many ups. And now its all evened out again. There is a very deep hole left by Penny, I still talk to her and its strange how, at times, I even expect emails from her! lol. But the big 'high' of all the excitement created has gone and its left me scrabbling at times for a handhold on the good stuff that is all around.

This sounds so selfish. I am really glad that things have calmed down but am struggling to find this new normal, struggling to balance the good and bad of cancer - and there is definately good that has come from this. I will not ever go as far as saying that I am glad Steven has leukemia, but I will definately say that I have been tremendously fortunate in the good that has happened to me since his diagnosis.

The shop is very busy and everyone and their neighbor has a sick computer that needs to be fixed - this is wonderful and keeps us very busy most days........ I have also printed out hundreds of photographs and then are all stapled on the wall all over the shop. The photos from the past trips are now going into albums - into retirement, and these new ones will keep us going for a while again. just a while.

Steven is due for another blood test this coming weekend - end of the month and a doctors visit with PCR in early January. But first comes Christmas. My wish this year is that we can all look at this as Christmas and not 'the first Christmas' with leukemia. There are so many "firsts" with this disease in our lives and we are tremendously fortunate that we have this without the "lasts" that go along so many times when cancer is around. It's all back to front with cancer. First you get 'the last birthday/Christmas/Easter/Halloween/etc", then you get to do "the first birthday/Christmas/Easter/Halloween/ect" without them. It's all's all wrong.

Thanksgiving has just passed and it was incredible to think about how much I have to be thankful for........ just a short year ago, I would never have dreamed that I could be so fortunate and have so many thanks to give. This is not despite the cancer, its really because of Steven's leukemia. I am especially thankful that the circumstances allow us all to breathe easier now and that Steven is reacting so well to the Gleevec.

I especially love a quote I picked up from someone on my favorite support board - the Asian CML Group - "the point of power is always in the present moment."

Not in the past. Not in the future. NOW! Thats all we can do - deal with this moment, be strong in this moment and love the very best for this moment. The rest will simply have to take care of itself until I get there..........

Love and Light

Monday, November 13, 2006


Feelings are strange things. They are never the same as the one before or after, they never can belong, in their original format, to anyone else. They can change in a split second or stay the same forever. And you never really know what that feeling you have right now, will do. It can be a royal pain in the rear end at times! :-)

The one sure thing is that your feeling us uniquely yours. A feeling may be based on incorrect information but a feeling is not wrong. It just is. And if you discover its wrong for you right then - you can change it. Or not. Or it might change all on its own and surprise you too.

People can tell you how you should feel in certain situations, or you can expect yourself to feel a certain way in some situations. And then you can add to those feelings by the confusion created when you don't feel the way you think you should! Phew - now I am feeling confussed
:-) I can easily run myself ragged just thinking about thoughts and feelings.

When Steven was diagnosed with leukemia my feelings were the worst I could ever imagine - they went beyond the raw, ragged, open-ended-nerve feelings. Some people even said I should "stop feeling like that - all was going to be alright, right?" It was/is 'the good cancer' and I did not have reason to feel like that, they said. I did note that everyone that said that, had no direct dealings with cancer........ I don't blame them and am not angry at them, but they did cement sincere hope that I never utter those words to anyone else again.....

There is no way I can understand the feelings of others, or why they feel that way - so much is built up from things that happened long ago mingled in with the 'now' and I would be lying if I said I could even imagine what anyone else is feeling - unless they are exactly in the same situation as I am. Is that even possible?

But back to my feelings. Somedays I am really angry at what goes through my mind. Surely I should be able to control what goes on inside my head and gives me those feelings, but reality is that sometimes I simply cannot. At times my mind goes like a rollercoaster on a downhill slope and I can even hear those wheels turning and there is no way to stop it until it gets to the bottom and glides to a stop - by then I am really ready to fall out of that car! Those are the bad days, the days that tell me that no matter what good news is going on, no matter how wonderful everything looks - its cancer in my boy and I cannot stop it! I hear that word over and over again, just like the train wheels on that track. Those thoughts can spoil birthdays and visits, can spoil walking down memory lane and definately ruin whatever day they come into! And it is not always possible to stop those thoughts.........not always.

Then the guilt days arrive. Those are the days when I feel great, when I see the photos we took on the fundraiser trip and share the wonderful memories. Those are the feelings that arrive when I see how much I have grown and learned and enjoyed , when I think of the amazing people I have met since Steven's diagnosis. These feelings creep in when I think of my life and all the positives that have come about since March. At times when I think of all these things I wonder at how so much positive can and does come from a cancer diagnosis. It's strange and almost rediculous to feel guilty because my life has improved because of this cancer in my son's life. But those feelings happen too and I can only hope that Steven feels some of the positive things that he,and others, have made happen in his life since his diagnosis.

And then I have my pure angry feelings which is really frustrating because there is no one to blame for this cancer and nothing to kick against ..... I am angry that Steven has this, angry that Laura has to deal with this too and angry that I have to deal with it, just to mention a few! There are days when I don't want to deal with it. At all. So..........there are days when I don't. There are times when I put off even reading the support groups and days when I simply cannot because my anger at even knowing that they exist gets to me. So I dont. Hopefully all those there know where I am coming from and dont think I am ignoring all their news and happenings!

And yes, I have had a day or two when Steven or cancer has not crossed my that bad? I dont think so, but yes, those guilt feelings crept in about that too. How could I not think about my child that has cancer?? Now, after much thought, I think its healthy. Its a subconcious way of staying strong, with going on 'as normal' and knowing that he is in a good place right now. As it was before the cancer, may it continue on forever after the diagnosis - that would mean that Steven stays in remission! The immediate trauma of dealing with the diagnosis took everything out of me, blew most of my other thoughts very far away. But now those other thoughts are finding place in my mind again. I don't think Steven would begrudge me this - if he knew that I had agonised over it! I think its a natural process.

These are all feelings that I am learning to look at, acknowledge and try to put it in its place. I believe that this is all part of searching for, and hopefully finding, that 'new normal'. Now if I could just train those different thoughts and feelings to have 'visitation limits and times' ........

When I feel wobbly, I no longer try to keep it inside. Do you know that those feeling simply thrive inside one and grow at a phenomenal rate and then make one explode like a shaken champagne bottle! So now I let them out as they arrive. Mostly. When I can. And its working for me.

And, I think most importantly, I am learning to accept that my feelings are simply that - mine, and they are not wrong, no matter how intense or light. And I move forward with that knowledge, learning that they are all ok and acceptable at the minute they arrive, or even if they simply don't arrive when I think they should! Round and around and around I can go.........

Discovering my feelings about my feelings has been quite a step forward and hopefully one day it will all make sense.

Until then I will carry on learning that dance......... one feeling at a time. With a smile tonight.

Tuesday, November 07, 2006


Steven's bone marrow results came back - negative for leukemic cells! And his FISH test came back - negative - no sign of leukemia cells! And although I have not seen the results of his PCR test - the doctor says that that test came back negative too.......... So he maintains CCR - Complete Cytogenic Remission. This is wonderful news. Next PCR test we are going to insist on the quantitative test which will then give us more than just the positive or negative reading of this test - we need numbers but it does not look as if we will get it this time. He also went for his monthly blood test at the local clinic and all those readings were just fine! :-)

The results are wonderful, really wonderful and I just dont understand my 'inner quietness' about it, its not a peace I am feeling but rather the lack of the "yippppeeeeeee" this time. It's not as if I am not happy - of course I am. It's not as if I am not relieved or thankful or anything positive, it's just that that big thankful sigh is not there - it feels flat. Maybe its something to do with trying to get the PCR results in writing, or maybe I am just getting used to this ride - I wish! :-)

Steven and Laura were here yesterday and they both look gorgeous! It is wonderful seeing this young couple moving forward, of course they carry their worries but they are doing it with such strength and determination and smiles that it's a lesson in itself.

Penny's memorial service was last weekend and it does seem as if I am taking her passing very hard. She and Steven are kinda intertwined in so many ways - it's through Steven and his leukemia that I met her at first, the RoadrunnersUSA trip was in honor of both of them. And she was my friend. I miss her lots, and then some.

The weekend before, my eldest daughter got married - looking beautiful and making me instant "Granny Annie" to three beautiful little girls. They are a lovely young family! And my youngest daughter moved to California continuing her Marine career. And both Frank and I had flu.

So it has been a hectic and emotional few weeks for us all and maybe all this plays a part in the lower excitement level at Steven's results.

I have to say something about the support groups I read daily and know that I can go to any time I need some advice, calming or someone to talk to... When Steven's results come in, its never possible to get the doctor on the phone to clarify some of the terminology, so I type the questions to the Asian CML support group on the internet. There are often multiple replies of support and Anjana or Roy, and others too, will always come back with the information needed to stop my nailbiting. Debs is also there to help understand what I am going through while waiting for the answers. This support is totally priceless. Totally priceless. The support groups have a search feature where I can look for any other posts to read before posting my questions, and to learn the things I need to know about the results. Again, this support is priceless and I hope everyone that is going through difficult stuff, finds a group as wonderful as the ones I have found.

So one set of testing has passed, and the next one is already approaching. But we do have a good few weeks till the next CBC and months before the next PCR test. So we will all move on again until that climb in the 'worry factor' starts again.

I was just thinking about some of the roads we travelled while on our trips to Alaska and Canada and out west. Many roads were narrow, bumpy, no barriers, curvy with some reckless drivers thrown into the mix. This is life too. Sometimes it seems as if the roads in life are simply endless and not safe and rougher than we want with some really scary happenings along the way. But we got back from each of our long journeys safely - and we will get through the rough roads in life too.

Hiking up the Zion Narrow was also a lesson to think of. There we were clothed in only shorts and t-shirt, wading up a canyon at least knee deep in water much of the time, not knowing what was ahead of us around that next corner. Of course there were dangers there even though many others hiked that canyon. There were always warnings of flash floods, twisted ankles, serious falls etc etc., but that did not stop us either - we moved forward looking ahead to the next beautiful view, at the same time feeling the blisters in our feet and adjusting to freezing legs. This is the way life should be lived - looking ahead while dealing with what is happening in the 'now'.

If we sit still and miss out on life because of the pain, or potential pain, along the way - we will miss out on life. The words on Penny's blog read: "And when you get the choice to sit it out or dance.....I hope you dance"

It's a learning curve, this dance, and not always easy at all - but we would lose out on so much if we did not at least try to do this much of the time.

And so we will dance step at a time.

Love and Light