Results.. and more waiting.

I have not written for a few days since getting Steven's results and that's probably because although I have the results of his PCR, I am not sure where we are going from here. The trend is still downward - with a reading of 0.019%. But. Dr J says that he thinks they should increase the dose of Gleevec to 600mg. He is waiting to talk to Steven's specialist at Vanderbilt and I am waiting to hear Dr Druker's view. His first PCR was 0.13646, 2nd: 0.02868, 3rd: 'negative', this one: 0.019%. It's going down!

Waiting. At times this is worse than facing cancer itself. The waiting eats me up and leaves me drained. It's something I had better get used to............

Although the downward trend is good with these PCR results, apparently it is not a big enough log-reduction at this stage. AAAARGGGHHHH! My personal feeling is to keep going on 400mg until at least the next PCR in three months time and to see whether the slide downwards is faster by then. When he had his PCR in October, a qualitative PCR was done and it came back 'negative'. I was not happy with only getting a "negative" as a reading although the doctor said that that was sufficient, that as long as it read negative it was ok and we did not need to see the numbers. Now that we do a quantitative test and the numbers can be seen, now he is talking about upping the dose? It does not make sense to me. At all. If we had done another qualitative test, that would also have read negative. And then what would his reaction have been?

I wish I had a feeling of being able to leave all this up to the doctor, but unfortunately I still have this incredible need to check up on and second guess, research more and get other opinions as much as possible. When Dr J first called me with the results, right after telling me the results, he started talking about a bone marrow transplant again, asking about matches. Even now, my guts churn in my stomach and I feel my breathing coming faster when I think of this option.

The information I am getting/reading/hearding says that these PCR results are ok - not absolutely fantastic at all - but definately going in the right direction and definately at the very least - ok! Many many people take many years to reach these readings. WHY is the doctor talking BMB's and increased doses? I don't get it.

I wish I did.

I don't.

It drives me nuts.

Every three months I become a true Gemini - dual personalities. I function on one level between the PCR's, trying and pretty much succeeding to keep everything normal, work, play, move forward etc etc. And then 'test time' comes around again. When the results are good - its great, but now when I feel that the doctor is wobbling between treatment options, my second level of functioning kicks in. The worry runs like a river below the surface again, making those rocks green with algae and slippery as hell, and I have to fight to keep from slipping into that full worry mode.

I have to remind myself constantly not to keep talking about this when I talk to Steven, at least until I have something definate from the doctor/s. He knows I will be honest with him, but he needs to move forward as strongly as possible, and not be dragged down by worry until its necessary or not. He knows I do this and its ok from both our sides.

The stress for me is something I have to learn to deal with. So often I have thought I have it under control, but then I realize that I don't, not really, and especially not during 'test times'. I really, truely, sincerely hope that Steven is able to move forward and around this, more than I am - especially around test time.

Some good news! We have collected another $1040-00 for cancer research through our www.PenniesforCancer.com website !!! May every penny be blessed and do something truely wonderful - just as Penny did.......

How can I not see life as simply beautiful when this is one of the last things I see before going to sleep ....

Love and Light
Annie
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Odd happenings.......

Steven went for his PCR earlier this month. The onc called on Wed evening to tell me that "two of the three tests were negative and the third 'only a little bit positive'". I confirmed with him that it was a quantitative PCR we were talking about, he said yes and said that the results of 'the third test within the main test' was 0.019% and asked whether we had a suitable bone marrow donor....

At this point I just asked him to fax me a copy of the results this morning. A blank fax came through so I asked them to re-send. By midday when I had not recd them yet, I called again. They were obviously irritated with me this time saying that the results would be faxed today. By 4.15pm (they close at 4.30pm) when I called again, they said that the doctor had not signed off on the results yet and thats why they could not send them. I corrected them, giving them the info that he had indeed called me the day before and they had tried sending it already this morning. I was assured that the results would be faxed immediately.

Each time I called them, I clearly identified myself, not that its necessary as my accent gives me away every time, and gave them Steven's name too.

Finally, the fax came through. The results looked ok for CBC (not a PCR!) BUT the REALLY big problem is that they sent me test results of someone else!

The name, DOB, test date, type of test, name of doctor and patient number on those results are all of someone else.......

I immediately called them but the office was already closed for the day. Tomorrow is going to be interesting, by the looks of it.

I am not worried about the actual test results - just very concerned about this process of getting a copy of the results - or rather, not getting copies!

Will update
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The PCR Wait

(.......... and, of course, "the weight" - but we won't go into that issue! :-) )

So today I could not wait any longer and I called the doctors office. Steven's PCR results will be back by Friday midday. As a friend says: "We can wait that long!" Yup, just a few more days and we will know just how wonderfully Steven's blood, chromosomes and marrow are doing. How's THAT for absolootle positive thinking?!

I know that I am not alone in this fight against cancer in my child and that it tremendously comforting, especially late at night and when waiting for those results. Yes, Linda, that fear and sadness creeps in. No matter how I lecture myself, it slips through that human crack in my armor. I think the sadness is deeper than the fear - it's a sadness because there IS a fear. More fear than I thought possible. I have been successful in moving forward, not focusing totally on cml and even some days not having that combination of letters in my brain, not in the forefront anyway, not often, but it has definately happened. I think it would be unrealistic to think that this is something that will ever be far from my mind at all and I do think it's important to keep looking for a way to empower me against it - for something to fight it and my fears in a positive way. And maybe by doing this, I will pass on some power and strength to Steven in his fight against this cancer.

If there was something I could wish for - I think I would wish that I could know Steven's thoughts on cml in his life - his deep thoughts. I am sure they also change regularly and that fear does creep into both his and Laura's minds as they do mine. But I wish I knew how he is dealing with this without the 'mama protection' he naturally does. I know that at times I gloss over the heavy stuff to save face, to keep things on an even keel and to save the person I am talking to the anguish my un-edited feelings would no doubt cause. Maybe I don't really want to know his feelings. But I do. I think.

Time for sleep.
As Jerry says: Never give up!

Love and Light
Annie

Letting go those cords of fear.......

Last week I went with Steven for his Oncologist visit. His CBC came back as close to normal as a mama could wish for and blood was taken for the quantitative PCR test. Now the wait has started again.

But this time its different. Steven looks wonderful, he is particularly happy today because he just came back from picking up his new 2003 Nissan 350z. He has the 240z, the 280z and now the 350z - silver, black and this one a beautiful kind of burnt orange. Anyway - he is happy, looks wonderful, is getting on with his life, bloods are great, attitude amazing and its time.......

Time for me to let go those "cords of fear", not let them out of sight by any means, but let them go long enough and well enough to live again. Someone wrote me a simply awesome email and pointed out that worrying about quarterly blood results is simply crazy - we could be dead in the next quarter minute! They said that they would rather be weird (and this was in a good weird way!) than live like I do. I have been living in fear, focusing myself around Steven's cml, actually using that not to do other stuff. A reason, or excuse, if you want, not to function on a level that I know I am capable of.

I thought I was in a good place before, but now I have a real clear purpose. I want to do something positive, I need to strengthen myself for me and then if I need to be strong again one day, I will be better prepared. But mostly this is for me. I want to do 'something' with my photography and writing. Something that will enable me to follow my passion and make a real difference in life too.

Photography has been my passion since a young teen and the writing part just happened over the last long trips we have made. I will put together a book on this last journey we made to Alaska, carrying so many along with us, and at the same time will try to do something every day that will take me closer to what I believe I can be.

This is part of finding the new normal in life. To find the new normal, I have had to realise that it's ok to live again, to let go the hold I have on cml, to want to do something for myself and to want to let go that stress of constant cml focus. It's ok. It's acceptable. It's good. It's going to happen.

10 months - thats all its been. A looong lifetime since Steven's diagnosis. So much has changed in all of us. So many lessons learned, so many strengths and weaknesses discovered and yet, despite, and because of cml, we are all better people. Through the people I have met and the many, many that have supported us through the support boards and emails and in other ways, I have learned that we are indeed really, really fortunate.

When we first heard of Steven's cancer, we had to do something to try to fix it, thats how the Alaska trip happened. Now I have to show him and my girls that its ok to move forward together with cml but to focus on the good things in life, to focus on me again with a really beady eye on Steven and the cml. There is no doubt in my mind that one way or another we all face some type of trauma or hardship or pain in our lives - I can be an example to them and show them that its ok not to drown in it all at the expense of myself and my life.

A couple of weeks ago I read a short sentence that started this wheel turning.... "Cml is almost a chronic disease - take a pill a day - check every three months that everything is ok." Wow. This struck a chord. It tumbled around my brain for a good few days bringing a good feeling along with it, and then Debs called me and I shared it with her. I could literally hear it strike a chord in her too! She "got it" like no one without a child with cml could. Just hearing that she 'got it' made it real for me too - that started that wheel spinning in my mind - starting to open that door that would allow me to look at my life again. And then that email arrived and the doors and windows were all flung open.

I feel lighter. Thanks y'all! :-)

It's been a good past few days here - really good.

Love and Light
Annie
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Support, Understanding and Accepting

Roots: Even though the ground was washed from under our feet with Steven's diagnosis - we will make new roots, create a 'new normal', even though it might look strange to those on the outside......







I try to follow what other mothers do for/with their kids who have cml. Mostly with those I read about, the 'kids' are younger and are still living at home. This is why the connection with Debbie and I is so wonderful - her daughter Laura and Steven both live elsewhere and are around the same age, close anyway. This is a strange place to be - I cannot quite consider myself as Steven's caregiver and yet I keep tabs on all the results, readings, appointments, go to them with him and generally am the one that watches out for him regarding the cml. Does this make me his caregiver? Does it even matter? "Caregiver" is just a word for someone that is a support of someone that needs it.

I am not sure what I am trying to say, except that at times I get the impression that friends and family definately don't understand my position. I am not angry in any way at all about this - they cannot possibly understand my feelings, fears, relief and joys around cml. I hope they never do because this would mean that they have someone even closer to them fighting a serious disease. But it is difficult to hear things said that are so far from the reality of dealing directly with this cancer.

Steven does look wonderful now and I sincerely hope it stays that way. People see this and wonder why I still worry. I worry because my boy has cancer. Simple as that. It never goes away - it never will. The cancer and the worry. I read the boards and the stories of others with various forms and stages of cancer because it keeps me centered and informed - not to keep my worry alive. I am surrounded by people dying - we all are; it's just clearer to me and I have learned that to run away from this creates an incredible loss of information love and support.

I read about people with cml who have families that just cannot face this disease and therefore don't offer any comfort or support and its heartbreaking. Maybe that's their way of dealing with it, but that leaves the person with cml very lonely. It must be a terrible place to be if your spouse, partner, parents simply won't discuss your illness and you are left to deal with it 'alone'.

Now, I don't want to take away from those with cml or make as if I am going through anything close to what those with cml are going through at all. But. As a 'caregiver' I find it a really lonely place at times when no one around me understands - even though I know that they cannot possibly understand. It's a lonely place when some think that you are over reacting when worry creeps in again, when they think that I talk too much to, or about, those with cancer. It's a lonely place when trying to share the worries, the tests or the results and I see the listeners eyes glaze over and their mind thinking of other things. It a lonely place at times.

This lonely place recedes tremendously when I read other caregivers stories, when I hear how others are dealing with cml, when I feel as if I am not alone. My wobbly moments become less when I read and talk to others that are fighting much harder battles against cancer, when I read about others that Gleevec is not working for, when I read how much harder others are having to battle this disease. My wobbly moments go back into their rightful place and I calm down again.

It's these people on the support boards, that share their stories, that open their lives and give of their time and hearts, try to understand and who are always willing and ready to send a hug - no matter how 'unreasonable' the worry is.... It's these people that I owe my sanity to. They truely understand. They can. Unfortunately for them - fortunately for me.

I try hard not to feel guilty about how much time and space in my mind and heart cancer now fills, I try hard to accept that I am what I am and no one can understand exactly where I am in my personal battle for Steven and against cml - and my sanity in all this. I try hard not to feel upset when someone does not understand that people I have never met, and a few that I have met very briefly, can give me 10 fold, and more, the support they can. I do try hard.

As long as I live, I will worry about Steven and cml to the degree that my heart, head, stomach and the results, of course, dictate. As long as I live I will try to keep updated with the progress of this cancer by talking to people who have cancer, who are caregivers - I will surround myself with them if need be. As long as I live I will surround myself with people that really do and can understand - whether that is in person or on the internet. As long as I live.

Right now I am in a really good space and I realize that this is only because Steven is doing so well. I read the boards regularly, all of them! I stay in contact with many who have cancer, have lost someone to cancer or caregivers of those with cancer. These are the people that are keeping me sane and straight because they know more about me at times than I do!

It's largly due to these people that I have really regained my interest in photography, that I enjoy doing other things now, that cancer does not fill my every waking thought and that I feel that I am getting close to 'sane' again. Not sure that I ever want to be totally sane - that would be a lonely place in a crazy world - LOL :-)

A really big thank you to all of you out there. A really big thank you.
Love and Light
Annie
:-)

Time goes by......

This photograph I took reminds me just how delicate, precious and beautiful life is.......

The time is flying by and I find myself saying that 'tonight I will update the blog' and then tonight goes by again and again and again. But its going past gently and smoothly with a really good feeling in the air.

Steven had his PCR test done again this past Friday, and now the long wait begins. I saw the results on paper that said that his last PCR in October, done qualitatively, came back normal/negative. I saw it, but still have not managed to get a copy out of them! But. That was really good to see that - so now we hope that this next one, which is being done quantitatively, will also come back with a bunch of zero's and then we will see the trend in his tests....... It all looks good though. Really good. The CBC, complete blood count, that Steven has done every month is coming back great too - all the bloods either perfectly lined up or pretty darn close. Now he can push those tests a bit further apart - once every 2 months and a PCR every 3 months. Hopefully another bone marrow biopsy is not on the horizon for a goodly long time - when that happens again either he will be sedated, or I will! Definately. :-)

I worried for a good few weeks before this past appointment that, although both Steven and I like this oncologist, I would have to 'fight with him' to get the PCR done the way we wanted it, fight about whether the last PCR was actually done or not, and ..... something else that I just dont remember right now :-). Well, no fight at all and I realised, yet again, that MY attitude is what counted for so much when asking for something.. Steven is still leaving all the details to me and the doc, just going to the appointments and reporting no side effects and no negatives... He seems comfortable with the doctor and I left the room early, leaving them alone - Mama's got to butt out at some time. All the way to the appointment and back again, all he could chat about was the new car is he in the process of buying - a 2003, 350Z. I have to admit it looks good!

What was really good was to see that Steven is showing interest in, and understanding his results, definately listening to, and taking an active part in his treatment, but a much bigger part of his life - is his life! His cars, his job, Laura, his friends and everything else appears to be of higher importance than this darn cml. It's good. And yes, we are so tremendously fortunate that everything is going so well - I know that everything can change in such a short space of time and I think he is trying to fill up on life and firmly believe that its just going to get better and better.

I have to take the lead from him, and have been able to do that a lot easier in the past few months. Steven looks great and we have a good few people that come into our computer shop to tell us that they are glad he looks so great and to ask about him...... I admire this 'child' so much and it was good to sit behind him in his office the other day and watch him work at high speed with quotes, computer, phone and co-workers...

So life is getting back to 'normal' in many ways. There are definately still the times when my stomach squinches up and my heart rattles but mostly now I can just let it go after acknowledging the feelings.

From the bottom of my heart, the deepest part of my soul and the deepest crevasse of my brain, I hope that Steven is one of those that has a 'smooth ride' with this cancer.

What does one do when you miss someone so much but they are no longer here to talk to? Funny, as I typed that, the answer popped into my brain: "Talk to me, I can hear!" I found a penny in the parking lot today...........

Love and Light and a really big smile

Annie

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