Friday, February 29, 2008

quieter soul

So where did all this newfound 'freedom' leave me? Well, its a growing and learning process, and I know that I have tried it before. This time I have done better than last time, but to be realistic, its only been about a week! Steven has the flu and I have rationed myself to one call every second day - it's such a fine line to walk - call him and feel like I am fussing, or don't call and then it feels like I don't really care about him feeling sick... big sigh. But I did what I thought was best and called him with all sorts of valid reasons that had absolutely nothing to do with flu or cml - of course! :) But it gave me what I needed to help along the weaning process - a telephonic robo-scan. And I bet if I asked Steven, he would not mind me checking up on him and I know that I am probably making a bigger deal out of it than what it is, but this is what happens in my head when something like the 'simple flu' raises its head in our lives.

But on a different level - deciding and understanding and accepting that I need to step back a little, or a lot or that simply it's not necessary to be this involved at this stage leaves a space in my days and in my head. It's not that I have something that I need to stop doing, it's not as if I am not still obviously involved the same as I was last month and the month before - it's just the level that is different. But it still leaves that hole, a gap, and empty place.

I didn't think that would happen - or even could happen. Just an acceptance of something, a mental backing off.......... it leaves an obvious gap? So I have been playing a lot of snood on the computer. The shop has also been much quieter this past week which has also probably contributed to the 'empty feeling'. But no, that's not it. It is more than just having extra time, it's more than not doing something I am used to doing - whatever that was, it's something deeper than this. It's like giving something up, something tangible. It's a definate letting go. Or letting be.

It's not a bad feeling in any way - just sort of confusing at first and left me lost in a strange way for the first day or three. Then it moved to being just an "extra space" and now I am slowly filling that space by playing with my photographs and generally just getting on with it all. But I am leaving that space available - I guess it's like a fat cell, always there and always very easy to fill, but probably better not to have it full up at any time at all. Ok - even I had to laugh at this analogy and wonder where it came from..........

I honestly find my soul quieter this past week. I saw Steven briefly this evening and even if he is still all bunged up with flu, he looks well enough that I really am not concerned at all. Maybe this is just the flu this time again.

We are now at the two year mark since his diagnosis - so many memories come flying to the surface and it feels like lifetimes ago that all that happened. Also just like yesterday. He was diagnosed because he had flu that just would not go away. Hmmmmmm. Nope - not worrying. Yet :-)

And may my 'worry cell' stay relatively empty for ever...........and ever.

love and light

Saturday, February 23, 2008

A Man...........

This weekend it will be two years ago that Steven came in the front door with a strange and crooked smile on his face and told us that the clinic had referred him to an oncologist.

I think that the body and mind are amazing things. (And here I have to say again, that I can only talk about what went through my mind and cannot begin to try and describe Stevens thoughts and fears at the time so I won't - this is just my viewpoint.) I know that I did not freak out right there, actually I don't remember too much about what I did other than tell him that I would go with him to sort this out - ha, suuuuure! - and I cancelled our just-reserved trip to Florida. No, I don't remember crying then, I don't remember much at all about that evening. Steven had just moved out of home three weeks before and he went on home. I do remember thinking very clearly that all our lives had changed forever, but I dont remember my exact thoughts at that time at all. It did not look as if Steven fully understood what an oncologists speciality was and I was happy to leave it like that for then. Maybe it was me that did not want to go into it. And so one hell of a ride started. One day I will ask Steven what he remembers about that time. Not today.

He wondered out aloud at the doctor's office the other day why I was still so worried about him and I came up with a flip reply for the moment but then found myself thinking about it quite a lot over these last two days and the truth of the matter is that I am not worried anymore - I am just gently mom-freaky now. I was not able to write down all my thoughts about this latest doctors visit, because it has literally changed so much and I had to sort some of it out in my mind first.

Over these last two years, I am sure that I have been labelled a neurotic mom, an overprotective mom, a nuisence, a pain in the behind and other places too, just to mention a few - and its true. I have been. And in many ways that's been very good for me. I have been so deeply involved in every aspect of Steven's appointments, blood draws, visits and anything else relating to this cml. Soon after he was diagnosed there was a Leukemia and Lymphoma Society meeting in Chattanooga and we all went. It was there that I got this 'Relentless' bracelet that I still wear - its now a very faded light pink but firmly on my arm :). Anyway, at this meeting we met a tall, dark doctor who I promptly nailed to the wall, figuratively speaking, and asked him ALL about EVERYthing about cml - logs, pcr's cbc and all those things that I was starting to vaguely understand and needed immediate (if not sooner) answers to! At some point I remember looking at the poor mans eyes and realizing that I was being unkind, to say the least. He was very gentle and very sweet about it all, and I knew even then that he was reeeeeally happy when I moved on ..... lol.

He is now Steven's doctor! Dr S. I thought it was the same doctor and I remember thinking that he was a gentleman as well as a gentle man and very kind not to have just brushed me off that night that seems to be lifetimes ago now. He must have recognised one desperately scared mama.

Anyway, after Steven's appointment on Thursday, he told me that he remembered me and all the questions I asked him and told me that I had kind of bombarded him with things he did not have the answers to! Then he blushed and apologised for telling me this. You know - the combination of him telling me that he remembered and what his thoughts were at the time (and I am sure his feelings that night were stronger than he let on when he told me - lol) and then his blushing apology really convinced me that this was the doctor and the man that I wanted on Steven's team. By that time I was already convinced, so this was really just the setting of the cement.

Before we went in to this appointment, I told Steven that I wanted to back off and start letting him 'do' his appointments without always butting in. He was totally comfortable with this - he probably has always been, but I had not been seeing that, or even looking for it. So I did, I sat back - but it was not necessary. Doctor S immediately locked in with Steven and asked him the things I was only too keen to answer before. I think that the first doctor probably tried to do this, but Steven was still shell shocked and me frantic so I took over, then with Dr J, I again did not give Steven, or even the doctor, the chance to take charge and both he and the doctor got used to me 'leading' the appointments. Big Sigh. Not good. I am only realising this as I write this now. wow

Anyway - it seemed to me that Steven and Dr S got on very well, Steven asked him a few questions of a few small things that were concerning him and Dr S answered in plain english with a wonderful sense of humor and caring. It was really good to see how easy it was between Steven and his doctor - and maybe it happened because I finally butted out and let it happen! The one thing that I was wanting in a doctor for Steven, I was not allowing to happen because of my insecurities and my need to try and be in control and make the situation just right. Maybe this time I got it right. Finally!

Dr S had wonderful advice: Everything in moderation, live your life to the fullest, watch yourself as everyone should, take your meds, and keep an eye on cml and again - live your life to the fullest, as everyone should. I asked him about Steven not reaching 3 log reduction at the two year mark and he said that because he was getting stable results with his pcr and the numbers were so low, not to worry. As long as he stays stable.

He did say that no one knows what this disease is going to do - it could lay dormant for ever or could go into blast at any time but that worrying about it was not going to help - no one knew. I asked him about reaching PCRU faster than Steven was headed - again, stability and quality of life counts for more than a quick PCRU, he said. He stressed that gleevec is still so relatively new and long term data is not available yet - so, keep an eye on the results of regular testing and live life to the fullest.

Mama's heart sang! So now I don't feel the need to go with Steven to the doctor next time - I know he can handle it, I know he can handle doing The Kit PCR too. They call him 'the kit man' there because of the OHSU PCR kit he came in there with last time.....they hate it. And that brings me to the other thing that really woke me up at that appointment. But first a little story.......

Many, many years ago, I was seriously overweight and joined a club to help lose many many pounds, which I did successfully. This class included going to weigh-ins every week where even our bracelets and earrings came off before stepping up on that dreaded scale. One day while waiting with sweaty palms for my turn on the scale, a little boy right behind me asked his mom why that "thin lady in the green dress" was there. I was wearing a green dress! It was me he was talking about! I looked around first to see if there was anyone else in a green dress before fully realising that I had reached my goal in more ways than one. It was something like this that happened in that doctors office.

Dr S was talking about Steven going for a bone marrow transplant and Steven had answered that he was not considering that at all right now. Docs response was "clever man!". I wanted to look around to see who he was talking to but there was just a wall behind me and no one else in the room. I KNEW the doc was not talking to that left just one other person in the room he could be talking to. My son. A man. A MAN!? Talk about having to bite my lip, yes the tears did spring to my eyes and it felt kinda foolish. I know he is 24 years old, has been out living his life for two years now and did pretty flippin well before that too. He was more of a man at 20 than many 40 year olds, but did I ever really see him as A Man? My son - yes. Steven - yes. I always call him 'my boy' to his face and in reference to him - an endearment. A Man? Wow......... I have a son that is a man. Am I old enough to handle this?? I am so incredibly proud to be the mama of a Man like this - yes I am ready for it :-)

So. Now that I have recognised some of my failings in dealing with Steven's doctors, made some appropriate adjustments, and had a tearful few seconds while fully recognising my son who became a man in his mama's eyes while sitting on a crinkly sheet of paper in an oncologists office, now I also recognise that this leaves me in a totally different space from last week.

Last week my behind was firmly parked in my rocking chair that bears the name of "cml - thy worry", this week I see that I have time and space in my mind to fill where the part of cml that was not mine, lived before. I am already out of that rocking chair, ready to take the doctors advice - live life to the fullest! Steven will, I am sure, let me know when and if he is worried about something relating to this cml and I know he will let me have a copy of his results and I am not passing it all off on him and letting it go totally- just gently letting things that should be his, rest with him finally. Letting him be all the man he is and has been for a goodly while already. I don't need to be with him at his appointments unless he asks me to be, I know now that he can do this - like the man he is.

I do know that if things go into "wobble mode" then I will be right there under his armpit again, but hopefully then I will remember the lessons of this time period and help him handle it, not take it away from him.

What a book this is, but all so good even though he is dealing with the flu again, sore throat etc, I am not worried - his immune system is strong, he is sensible and careful and aware. His sense of humor is intact and he is moving forward in a way that I am now going to copy. Well, try to anyway. I am sure that I will not stop worrying overnight, not stop wanting to know as soon as possible what the cbc and pcr results are, but I definately feel much more relaxed about it all.

Who would have thought that two years down the road with cancer in our lives, I really cannot think of a single negative thing to write about. We have learned so much, grown so much, met truely wonderful people and I think that we all live in a better space than we did before - so much more aware of living our lives to the fullest.

A really big thank you to Dr S for helping put my mind at rest like this, and for speaking to my son like the man he is, for treating him with care and humor so that he came out of the consult with a smile and at ease. Thank you for helping me sit back and leave this up to you and Steven.

And Steven, my son, my boy - A Man, a wonderful, truely amazing man - Fantastic! I do love you so.

Love and light
ps - watch this space when the next pcr is due to see how freaky I am then! LOL...

Wednesday, February 13, 2008

Valentines Day

A Rose for everyone..........

This day is an extra special day in so many ways. Its romantic, its fun and its a day when we can say, one extra time, that we love someone. I have never believed that this day is exclusively for lovers, or that it needs to be specifically romantic. It's simply another special day handed to us to make the very best out of it and to show our love in many different ways.

So - with that thought in mind I want to say thank you to everyone that has helped me through these last almost two years. All of you have helped give me my life back so that I can enjoy this Valentines day. I love you for your hand-holding, I love you for your support, your waiting with me, for understanding my cruddy moods around test time, for picking me up or re-aligning my thinking when I sink too low and for the joy and relief you so openly share when the results are good again. I love you for your friendships, for going with me and sometimes dragging me way beyond and away from cml. I love you for sharing your stories and scareds with me. I love you for all you know you have done and all you dont know you have done too.
So when I spend that romantic time with Frank this year again and tell him one extra time that I love him and enjoy the day once again, I will send a thank you to all of you too that I am sane, or insane enough (in a good way!) to be able to do so! Frank has kept my keel even on an hour to hour basis at times. When I get 'frilly', he is still Frank, stable and solid and caring and watching with wide shoulders and ever ready smile.
And Steven......... without your sense of humor, your way of dealing with the cml, without your openness in sharing all the details of your treatment, I could not have survived these past two years. You, most of all, have kept me on the right road, you have put this into perspective and many times put me to shame with your wonderful way of dealing with cancer in your life. I love you, my boy - you are my hero.
Laura - how do I say thank you for your love, your support and your keeping a keen and loving eye on Steven? I wonder if you know just how my heart sings when I hear you saying that you check every night that he has taken his meds? I wish you could feel the peace in my heart when I see your determination to live a normal and good life with Steven. There are many ways to say thank you - but none really say well enough how deeply I mean it. I love you, Laura, not only for what you do but for the wonderful person you are.
With love and light to you all
and with the deepest of thanks

Monday, February 11, 2008

Got them!

Yesssssssssss - we got the results today!
PCR 0.082% (last time was 0.095)
Log reduction 1.7 ( last time was 1.6)

Slowly slowly they creep downwards........:)

I called the doctors office around 9.30am this morning and when 2.30pm came around with no return call, I emailed Debs for moral support and with her encouragement, called again. More waiting until finally at around 4pm the call came in. The ladies were really sweet to me and I think they heard my wobbles in my voice by this time. It was strange - this time the waiting was easier but maybe I sent my worries into the 'anger feelings' about not getting any return phone calls. Either way, I was like a very seriously pms-ing, menopausal mama tiger cat today!

Amanda at the doctors office was really sweet and sorted out the problems, even calling Oregon to get them to fax the results to her.

So tonight all is sweet and well again. Steven's response was as if he knew it all along and was just glad that now I knew as well. Sweet boy..

And I am tired. Deeply tired. So off to bed with me with a thanks to Amanda and everyone that held my hand through the wait this time...... its so incredibly helpful when I know others care right along with me. Thanks!

love and light

Thursday, February 07, 2008

Still waiting...

Did I get a phone call today from the doctors office? After two messages? No. No phone call. The frillies increase in intensity, but I am still sane, still smiling and really treasuring today. I spoke to Steven this morning and all is well with him;
Lisa sent me this picture of McKenzie a bit later today................ ...... and Joleen's husband Billy arrived safely back from Iraq this afternoon! What a day :-)

So I thought I would add this one of little McKenzie from when I was babysitting a few weeks ago - she looks so .... snuggly :)

What is really great is that although the wait for Stevens results is now getting long and I definately feel my blood pressure rising, I am more able to deal with the wait. Definately better this time. The shop has been incredibly busy and what with all the house renovations we are doing on the weekends, I am also very tired. Maybe being so tired helps too. This is good.

This past weekend was great because I had the opportunity to break down a very strong built in cupboard in the back room, which entailed repeatedly and wildly swinging the hammer, pounding away at something that was not designed to move - and then it did! Success! Now I need the equivalent hammer to beat the h*ll out of cml. Why do I see Steven running away?? LOL

Hopefully tomorrow we will have some good numbers. I really look forward to hearing Steven's voice when those numbers are good!

love and light


Wednesday, February 06, 2008

I called

Yesterday I called the doctors office to change the date of Steven's appointment from Valentines day to the week after......and to see if the pcr results are back yet. They took my name and number and said that they would go and look at his chart and call me back.

Today I called the doctors office today to change the date of Steven's appointment from Valentines day to the week after.......and to see if the pcr results are back yet. We got the date changed. Then they took my name and number as said that they would go and look at his chart and call me back.

Tomorrow ----I won't call

Do I take these people a cake and cookies and send them pretty "sucking-up" cards or do I get angry and at least ask for consideration in the face of dealing with cancer in my kid or do I do nothing? Is it too much to expect a return phone call when told I will get one? Even if it is to say that there are no results yet? So now I am left to decide whether to become a 'pest', a 'neurotic mom' and call every day, or to sit and wait for that wheel to turn at their pace.

In every doctors office, especially oncology offices, there should be a person assigned to do nothing else but to return calls - especially the calls from worried people. Just a "no news yet" phone call would go a long, long way to lengthening my life. Ordinary mothers easily become very worried mothers when it comes to their kids cancer test results.

So the wait goes on. I have to say that for some reason its been easier this time - maybe beacuse Steven looks good and there is no reason to expect a bad result. It's easy to be calmer under these conditions. Will I get used to this one day? Who knows, but one day at a time and an hour after these pcr results come in will tell me just how tense the wait this time has been.

Expecting good news soon
love and light

Saturday, February 02, 2008

The illusion ..........

I was reading Rhonda's blog the other day - boy does that lady have a way with words! Read for yourself at There you will see her post about road signs and life. It's really an excellent read.....

Anyway, it got me thinking about the things in life that we take for granted - things like markers, directions, markers and yes, the road signs of our lives. It might be the idea that someone will always be around, or that we feel as if our personal lives are stable, or perhaps that the house we live in will always be where we live - you know, the assureances of life. They really are not there. So this got me thinking about a different time in my life and the lesson that I got from it. At the time, the lesson was not learned. Now it is :)

Many years ago, just after arriving in the USA, we did a river trip down the Tennessee River from Spring City to Florida. It was during the many storms of early 1994 and many of the river bouys, the markers were washed away or dragged out of place.

When we found one that was in place and we could figure out where we were in the river channel, it was wonderful! One day we found out that those bouys were all in the wrong place, and another day we found about 25 of them washed up on the side of the river. It took us all a while to close our mouths again - we had nothing to guide us if they were all there! We could run aground! Yet another day we unexpectedly ran out of daylight before getting to a marina and had no light strong enough to guide us - what a night that was - and yes, we did run aground - twice.

There was a tremendous amount of debris in the river too and there was one particular very long day that I sat on the bow of that boat in the freezing cold, signalling which way my sister had to steer to stay clear of the logs and trees floating downriver. Most we missed. Some we did not. (life)

But the river kept on flowing, the next corner arrived, the next barge passed by as did the next town and marina. And our journey carried on. It took us down that river even if we were scared and lost. And the views along the way were awesomely beautiful.......... they still are.

Now I think of this in the light of Steven having leukemia and sometimes I even mentally throw away those bouys and markers and just enjoy the ride.. and learn to Just Be, one incorrectly placed marker, one road sign, one bouy at a time.

Nothing is permanent, nothing can be guaranteed to be there tomorrow the same as it was today. In many ways this can be disturbing, but in many ways it frees me to be all I can be today, just appreciating everything in my life today. The roadsigns and markers, the bouys of our lives are just illusions. Lovely safe-feeling illusions, but illusions nevertheless. They change, move, dissappear - thats if they ever really existed after all.

I am beginning to wonder if anything I wrote here makes sense.........

love and light