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...

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