Thursday, April 30, 2009

Many things learned....again.

So many things swirl through my mind and I wonder sometimes at the wisdom or need to write them down.  Many of these thoughts disappear into the days that are screaming past and other keep swirling around the back of my mind.  

First - this pcr waiting time has been so peaceful and smooth..... I have literally not worried much at all and even today when Steven went to the doc to get those results, I really did not even feel any hairs turning gray!  He will bring me the results on Saturday and I have decided not to call him and ask for the actual number - Saturday is close enough  :)  Sometime I have to turn it all over, and this is a good start.  

This past week I read about another person who died despite trying everything to get rid of cml.  It hurts.  Its scary.  I hate it.  And yet its reality and to shy away from it just does not help at all.. so I looked at it squarely and then flipped through Steven's folder of all his results, some of his recent photos and I felt better again.

I had a conversation with someone this past week where we were discussing natural healing of diseases, cancer included. After hearing that I was not willing to jump in boots and all without doing much more of my own research and get Steven doing what this person felt would cure him,  this person said that ' most caregivers would want to help the person they are caregiver to'.  Well, I know absolutely that this person did not mean it in a nasty, mean or derogatory way - but rather that they are very intense and excited about their discovery, belief and are perhaps frustrated at my lack of equal enthusiasm.  But it hurt.  Of course I want what is best for Steven, but I am not ready to try to get him to try something without first finding out all angles about it.  I know enough to realize that different diseases react differently to even natural products........... and, well now I feel as if I am defending myself again, but thats what that comment did to me.. made me justify why I was not getting Steven "to be healed".  Sigh. 

I am not really a caregiver to Steven - he really does not need one but I do keep tabs on everything for him and share the stuff that I know is relevant or helpful.  Does not sharing this 'natural healing' information make me less concerned or something? I don't think so, but it does niggle in my mind.

Today I also got a serious lesson is the absolute necessity of getting copies of medical records as the results come in as well as being 110% informed about results and what tests are done.  I had gone for some basic testing a few weeks ago, got the response of  "all clear" and had I been one of the majority of people today, I would have left it right there.  Not only was the 'all clear' not correct (nothing serious at all), but I was not given the option of taking meds for the minor problem and only discovered this information when visiting a different doctor today. Talk about an instant 'blood boil" 

If this had happened to me three years ago, I would not have done anything about it.  I would have just been quietly angry and moved right on, probably changing doctors, again, and losing even more faith in the medical world.  But I did not do this this time, having learned so much since Steven's diagnosis, I headed to the other doctors office and voiced my anger to both the doctor and her nurse.  I must say that I was really pleasantly surprised at their response and will stay with them.  I know that the communication problem was not on purpose and it definitely did not seem to be pure negligence as I had heard only good about them before going there and felt totally comfortable with them both.  I understand that life happens and sometimes things come together to create a mess like it did with my results.  But happen it did.

I do believe that because I went down to talk to them that this will help prevent it happening again and I seriously believe that we should all be very comfortable in doing this when we are unhappy with something our doctor says or does.  How else will these people that we entrust our lives with, know how we are feeling?  With all due respect to the years of learning they have done, they are first and foremost people, and that makes them just as vulnerable to making mistakes as we all are.

So go on - if you are not happy with something your doctor says or does, or how long they make you wait or the lack of communication - talk to them!  Your life might depend on it.   

This brings me to another thought.... Lets say that I had not asked for more details on my test results, lets pretend that I had been happy with that 'all clear' and lets pretend that there really was something serious going on that I was not told about.  Who would be to blame when the serious stuff hit under these circumstances?

Seriously.....think about it.  I am in charge of my life.  I would be totally stupid to give all that power to someone who hardly knows me, someone who sees a constant stream of people all day long and who would probably not recognize me in the grocery store, someone who cannot possibly be expected to care about all their patients as I care about myself.  How could I place full blame on someone else  in those circumstances if I had not cared enough about myself to make sure I am ok and to see and understand my own results?  

Keep up with your tests and results and get a copy of them all.  And encourage someone else to do so too.  It can save a life!

All in all today alone I was given three pieces of information that I should have had prior to this visit.  Some of this information was from 2005 and a different doctor and some went even further back than this...  In my case I was very fortunate - I don't have anything serious going on at all, but how many others are walking around with the 'all clear' bell ringing happily in their ears while stuff is going wrong with them?  

Although this sounds like a bad day - it really has been a fantastic one.  I re-learned valuable lessons, gained a bit of belief in the medical profession, gained more trust in myself and Steven's results are good again!!  

What a day....... :)
love and light

Tuesday, April 21, 2009

Pretty normal....

Over that past few days and even weeks, I have noticed that life has smoothed out.  It surprises even me to think that we are now well into the PCR result waiting period and it hardly crosses my mind!  I never ever thought this was possible.  I know - give me another week or so of waiting and the wobbles will start again - but they are so much smaller and less intense than they have ever been. 

I  sit here today with relatively no worries re Steven's cml at all.  Not that I don't worry, it's just that it is much more in perspective these days.  When I talk to him on the phone I cannot help but do that 'robo-scan' thing, and at times when he sounds tired to me, I have to remind myself that above all, high above everything, this child of mine is normal.  He has normal stresses, normal late nights, normal long working hours and has the normal right to be tired, behave accordingly and need extra rest.  

So I am now in a training period of my life - I try to look at all of this in a clearer way.  There is nothing I can do, no amount of worrying or biting nails will change anything at all.  I keep up with what is going on in the cml world of progress, the new meds and things, but from a personal stand point - I just have to let it go the best I can.  And it's easy right now.

Steven is doing well on all fronts and he and Laura will be here again for dinner tomorrow night which will further put my mind at peace.  Oh I just KNOW that I am going to make a fool of myself at their wedding with my tears!  The camera has a full warranty so at least I don't need to worry about soaking that. :)   

Yes, in many ways Steven getting married brings stronger emotions than what I had when my girls each got married.  Unfortunately I was not able to let my worry and sadness and scareds go long enough to get fully emotionally involved with either their big days.  Lisa's wedding was within the first six months of the diagnosis.  It was held locally and Steven was there too - I remember looking at them standing together and just wanting to sit down and cry - thank goodness I could put the camera between me and facing it all right then.  

Of course I was happy for both Joleen and Lisa, excited and pleased that they had found their someone special, but I know I was not this deeply emotional about it - I did not know how to divide my mind at that time.  They are both special and very understanding young ladies and understand where I was back then.

It's going to be totally thrilling having all three of them together this time.....oh those photos that will be born!

And so I see that my mind wanders further and further from cml and onto the big and small things in life that keep life rolling on regardless of cml.  Is this the new normal?  I like it.

love and light
ps.  The gull just looked so happy, bright, expectant of good things and as if it is dancing on the currents of the wind.......

Monday, April 13, 2009

this is just beautiful....

Something is happening these days - more things make me cry. A happy cry.  It's when I see something awesome like this lady singing or a stunning photo or hear a story of love or caring, when I read a story of courage of hope - those things make me cry.  And it feels like pressure being let off and it seems as if it's helping keep my life on an even keel.

I find myself looking for these happy stories, the good things and the beautiful things in life, and after just one episode of watching only bad on the news, I am thrilled that there are still so many glorious things out there.

Back to the singing lady - she just made my week!

love and light

Sunday, April 12, 2009

Inconvenient emotion

Oh, there is SO much good, so much happiness and so much to be thankful for.  Laura's wedding shower, a friend of my daughters wedding, Steven and Laura's new house, good pcr results, good cbc results, summer arriving, fruit trees blooming and on and on - beautifully so.  So why do I end up on my haunches in the middle of the card isle of Walmart creating puddles on the floor with my tears?

I went there with a happy purpose - two of them - to pick out a wedding shower card for Laura and a wedding card for a being sad was the furtherest things from my mind.  These days have been good on all levels and especially seeing so many wonderful things going on in Steven's life.  And then I found just the right the card for Laura - it said just what I wanted it to.  And while I was reading it again for the second time with a smile in my heart and on my face, its wording reduced me, with no warning at all, to unstoppable tears.  It said:   "Forecasting showers of happiness.........(and inside) followed by a lifetime of love!"  And the tears flowed in a very inconvenient shower of emotion.

I know that Steven has a good full life ahead of him. I know that he is doing well.  I know that the Gleevec is doing its job.  I know that even if Gleevec stops working that there are other meds out there that will pick up the slack and get him back on track.  I know this deep down as well as right in front of me.  But - those tears would not stop.  I dont even know what it was that got them going.  One minute I was all happy and excited and really enjoying looking for cards and seeing the hope and continuance of life in the marriage of these young adults.......and then bam!  The punch was hard, well aimed and took my breath away......and then I was ok again.  It was as if something just clicked into place, I took a deep breath, the tears stopped and on I went.  God, I am so grateful for being able to do that - to be able to move on again, to know that for now my son is fine - as are my daughters.

Do I feel sorry for Steven?  No, I don't feel sorry for him.  If I did, that would be attaching something negative onto him when it is really not necessary.  Of course I am sorry that he has leukemia and that he has this extra burden to carry with him through his life.....  But when I look at the struggles of others, I know that life really is very very good.

Laura's wedding shower was lovely and the wedding I went to the next day had me very grateful that I could look at it all through the camera lens, shielding myself from some emotions.  Weddings make me cry and I just know that I am going to waste my time by putting on any make up for Steven and Laura's wedding!

Steven had his cbc and PCR drawn last week Thursday. The cbc came back all in the normal range and we are back in that waiting time for the PCR results.  No worries yet, no frillies yet.  Still a way to go and to be honest, I have not thought much about it. Not too long ago cml was like a river in the back of my mind at all times, always being heard, always running.  What a lovely discovery recently when I realized that nowadays cml pops in through a window in my mind, not often staying too long at all and much more of a stream than a river.  I am so thankful on so many levels. 

Hans wrote a lovely blog the other day - he describes cml so incredibly well...... The Black Koi...  I loved it, Hans!

It's lovely to see summer blooming again, the fruit trees are beautiful, they are laden with tiny new fruit, promising an enormous amount of fruit. The grass is growing at a speed that beats the lawnmower and after a mere two weeks, provides a jungle for the doglets.  Little birds are hatching in all the bird houses we have dotted all around the house and it's light in the morning when I wake up.....  All absolutely awesome.  

love and light

Tuesday, April 07, 2009


My three chickens.  The pride and joy of my life.  U3 are just awesome and I love you more.
love and light