Thursday, January 24, 2008

Penny's Mom

The 23rd of this month was another very sad day. Penny's mom, Pat, passed away from lung cancer.

Penny was my friend and partner in who also passed away from lung cancer in October 2006.

I like the picture I have in mind of Pat being greeted by Penny on the other side..........

There are two incredible ladies, gone from this awful disease. So sad. My heart breaks for the family, dealing with all this grief in such a short space of time.

Love and light
and a hug to Trish, Peter and all the family

Tuesday, January 22, 2008

The Elephant......

Earlier this week The Kit arrived. This is the box that OHSU ships out to us so that Steve can have his blood drawn and sent back here for testing. The Kit sits like an elephant in the refridgerator until Test Day. Test Day was Monday.

Having blood drawn is simply having blood drawn, right? Yup, a few years ago it was. Now its something more. Now its that reminder, it makes me robo-scan my kid more closely. This Monday Steven looked a tad pale and tired and he had not had a cbc for over a month, and............ well, and.

So off we tootled to the new doctors office to have the labs done. I had the kit on the front seat of my car - and had to giggle - I had this clear picture of an elephant in my front seat, a pink one. Ok - so the stress was getting to me, but at least it got me smiling :) When Steven was called in I went along to make sure that the blood was mixed properly as I knew that this lab was probably also not familiar with packaging the blood like this. The poor girl was so nervous of doing it all wrong..... it did not matter, if it was wrong, we would simply do it again, no big deal. Then Steven sat down in the chair and started pulling up his sleeves in readyness for the 6 vials of blood that young girl was going to draw. I looked at this young man who was dealing with this all. I took in his pale and tired look and pleaded 'blood-aversion' and left. Chicken. Yup. Steven also said that he does not look when they do it and he managed a bigger smile than I did.

I waited outside in the waiting room for him trying not to be aware of the people there looking at me with 'that look' in their eyes and then I watched how they looked at Steven when he came back out.

His cbc came back as close to perfect as one could dream for and the wait for the PCR has started. We have not met the new doctor yet - that will happen mid February.

Sometimes I dont know if I just want to be worried or if its just the way it is... I try so hard not to get frilly, I know that there is so much good going on around this leukemia, I know that Steven is doing well and even that he is entitled to be tired and pale at times. I know this and yet the worry won't quit at times. It's not the nailbiting, sleepless nights type of worry anymore, its just a low key humming.

But its a good day today! The cbc is great and .......I will not worry too much about that blasted pcr result! I will not worry too much about that blasted pcr result! I will not worry too much about that blasted pcr result! Have I already said that? LOL

love and light

Friday, January 18, 2008

Good Days......

After the last visit to Dr J, Steven came out of there saying that "the doctor does not care - its all about the money". That's sad, but what is sadder is that I got the same impression. Now I know that different people see things different ways and that we are not fully used to how the medical profession works. I also know that I probably have a 1960's view of how doctors should respond or treat their patients emotionally. So although Dr J is probably a wonderful doctor, he was just not for us at this time.

So now Steven will be seeing Dr S, who is in the same organisation, but at a different office. It would be wonderful if we could interview these doctors, ask them questions before 'employing' them. Thats how it should work. Instead, you get sent to a doctor while still in shock, the average person kinda believes that the doc will have their best interests at heart and when the relationship does not work, its a horror story to change doctors. Of course I am speaking generally - I sincerely hope there are doctors out there that really do care, and show it too, about their 'employers'.

Now THERE's a thought! We are the employers of doctors! Why is it that it feels like the other way around? We should be able to interview them first, check out their credentials (which we can do, with limits) and expect the very best service for the incredible amount of money we pay out to see them! I look at how much a doctor visit costs - yes, insurance covers it all except a co-pay, but the amount is astronomical for the short number of minutes one is actually in the presence of The Doctor. Why is it that it's us, the 'patient' that seems to be grateful to see the doctor, and not the other way around? They should be doing their best to keep us coming back, instead it really feels as if it does not matter to them at all. So far, anyway......hmmmmmmmmmm.

Anyway. I really hope that this doctor is one that Steven will 'click' with. I would love to stop feeling as if I need to be one step ahead of the doctor, stop feeling as if I need to check up on whether the doc has the best info and I definately need to know that the doctor will at least do the tests in the way recommended by Dr Druker himself. I will not stop checking for a while, even if this move is a good one - well, until I know that Steven is with a team that really has his best interests at heart.

Steven looks good and when they were here the other evening for supper, it was so good to see him taking his gleevec just as normal as can be. No fuss, no problem and no hiding it. It looked as if it was all just a part of life for him. And of course it is - and it was good to see it happening so smoothly. Whattakid :-)

Two other good things happened this week. I got to babysit my youngest grandchild for a whole 5 hours! This was the first time she was away from her mama, my middle child, for more than 30 minutes and it was very interesting :-) She cried a little, McKenzie - not Lisa!, ate well and snuggled up to me all the time, either sleeping or just laying there while I hummed, sang and prayed very hard that she was done showing me just how awesome a set of lungs she has! That kid could take the place of a lighthouse! LOL. And then we got a box in the mail with an American Flag, a certificate and a note from our son-in-law (SIL) who is in Iraq until February. He flew a flag for Frank and I on Christmas day! And then sent the flag to us. How awesome is that? My daughter( my youngest child) is also a Marine, based at 29 Palms, CA and reeeaaally looking forward to him coming home again.

So, my bootstraps were obviously well pulled up - thanks again Kay for finding them for me! It feels good to have so much good going on around us. We are so thankful for every healthy day. I am very aware that everything could change in a second and very aware of those whose paths are not as smooth as Steven's, and therefore mine, right now.

Monday is PCR draw day again, then 3 weeks wait for the results. It will be easier. It will be easier. It will be easier. And then we get to visit with the doctor on...............yes, Valentines Day!

love and light
especially to Kay and family and Lea and family

Monday, January 07, 2008

Kay found them!

Kay found my bootstraps all the way in UK! No wonder I could not find them.. :-) Thanks, Kay, for a wonderful laugh.

It's awesome to have a friend who would spend the time to look up and find me some bootstraps....... and then send them so promptly.. And pretty too....Love and light and a special dose for you Kay - what a laugh you made this side........ :-)

Sunday, January 06, 2008

Boot Straps.

Today the Christmas Tree came down. Apparently we were in 'serious danger' of being called Rednecks for leaving the decorations up so long. :-) I thought it was ok to do so, but one of our customers enlightened us to this dilemma, so down came all the lights and the tree. I dutifully thanked that tree for being the conduit of so many happy and wonderful thoughts as I carefully packed all the baubles and my special gifts away till the end of this year. It was time, and now with all the decorations down, it is really true - Christmas is over and 2008 has arrived in ernest.

It was, all in all a good year. My lucky number has always been number 7 - thank goodness I did not have 7 children! LOL. As I was saying - 2007 was a pretty darn good year all in all and there is no point in pulling it apart, so I am simply going to try and make 2008 even better!

Now I just need to find my boot straps. My dad always used to talk about pulling oneself up by your bootstraps and getting on with life. Well, I cannot find my bootstraps! 2007 was great, Steven seems to be doing just fine, my girls are wonderful and everything is fine and dandy - but now I find it so incredibly difficult to get myself motivated to DO anything. I know I need to look into changing doctors for Steven, I know I need to start that process. I know that I need to start another year with a better plan on how to deal with this again.

And what I need to do is to stop trying to pretend and wish that cml is not still in our lives. Why can't we just start this year with a clean slate, no cml, no cancer. No? Well, the thought is there so much and I know I have been trying to push it all aside. There are actually times when it almost seems true that its all gone, no more cml, no more 'robo-scanning' my son as he comes in the door, no more counting the weeks till the next PCR. Speaking of which, we need to order the next kit from OHSU this coming week. His PCR is due the week after next. And then the wait begins. Again.

This writing is supposed to be therapeutic! But now I am starting to depress myself! Ok - snapped out of it...... I read some wonderful, heart-lightening words on Jerry's board just the other day. I know that I have heard them before, but this time they kinda sunk in. Here they are:
Dr. Druker supports your feelings on Quality of Life. He has said that ones QOL is more important than a deeper level of remission. Since we don't have a cure for CML with the current drugs, why should we torture ourselves to get to a lower level of remission.

Steven has not yet got to a 3-log reduction and his PCR results are not screaming downward to that valued PCRU as this mama would love, but he is still below zero and not wobbling too much at all. So these words are really comforting. Oh God, please let Steven not wobble with his PCR too much, let that disease not progress. Let him live a gooood loooooong life - waaaay beyond my days! please

I have even thoughts that maybe he just had a fungal infection..... there have been those diagnosed incorrectly like this. How does one even start to try and figure out if there was a mis-diagnosis, how do I NOT try to see if this was not the case? I know, I know - wishful thinking. But what if??

Am I hiding from it all? Where are my friggin bootstraps!!??

love and light

Tuesday, January 01, 2008

Oh Christmas Tree......

This year was different in so many ways with Christmas. Turns out that it was wonderful in every way.

One of the differences is that I added some special decorations to our tree this time - they are little gifts of different shapes and sizes, all in honor of someone that is close to my heart and fighting cml. It's funny how when I put them up I thought of individual people, but as the days went by and people kept coming to mind, many of those little gift wrapped decorations depicted my wishes and hopes for more and more people. Walmart did not stock enough of those decorations and the tree simply would not hold the number needed to cover for everyone in my heart or mind. I know that those who know that they were 'hanging in my tree' won't mind morphing into a thought of someone else. I know because they are all wonderful people who would do the same :-)

When I walk from the lounge to the kitchen, I have to go through the dining room which is not really a diningroom, but anyway - that's where the Christmas Tree is. I was going to take it down this past weekend but then I thought of a friend who said she loves to sit in the lights of the tree in the wee hours of the morning, and I started looking at this tree differently. So every day, I switch the lights on the tree and each time I walk past it I really, really enjoy it.

Since Diane shared that oh-so-peaceful picture of her sitting under the lights, I really love the sight, smell (yes, its a real pine tree) and beauty of our Christmas Tree - somehow a sense of peace is covering it too. Now I am not quite ready to take it down yet and next years tree is going to sit right here in the lounge next to my side of the couch so that I can also sit right next to it, under the lights, but not in the wee hours of the morning! Besides, that will save me many unnecessary trips to the kitchen :-)

All of those 'gifts' hanging in the tree has also brought such a good feeling - they glisten in the lights giving out stars of hope..... Each person who has touched me in this journey of cml, has been a gift to me which is why I picked them to hang there. For so many years, a Christmas Tree was lovely, but it just marked a time of the year in my life. So many Christmas trees were packed away or thrown out with relief in getting my space back again, getting life back to normal and so on. This year - the taking down of the Christmas Tree will be marked with a certain amount of sadness - I know I will miss it and all it meant to me this time. I will miss the thoughts and peace and hope that came from this tree.

As I am writing this, I realise that a Christmas Tree 'should' bring thoughts of God and or Jesus to mind - but I have to admit that the overriding thought and feeling that it gives me is love. Is this not close enough?

And now two verses of the carol sits firmly in my mind:

O Christmas tree, O Christmas tree,
Much pleasure doth thou bring me!
O Christmas tree, O Christmas tree,
Much pleasure doth thou bring me!

For every year the Christmas tree,
Brings to us all both joy and glee.
O Christmas tree, O Christmas tree,
Much pleasure doth thou bring me!

What do I wish for this new year that is about to hit us all squarely in the face? Well, I wish that the days are filled with knowledge that we are loved, knowledge that we are treasured. I wish that the days are filled with Peace - peace about what has passed and peace about what this new year will deal out to us all. And definately that the days are filled with Love. Love that comes from family and friends, strangers and God. Love that will wrap around us all and keep us warm in the storms that are sure to rage - and love that takes our breath in the good and wonderful times. I wish for many wonder-filled days.

Love and Light