Wednesday, November 21, 2007

Being Thankful

How does one express thanks in the face of cancer? How does one not!

There is so much to be thankful for this year, every day and every minute of each year - especially now. The main thing being that Steven is doing wonderfully and by all accounts dealing with this in his life in a very mature way. His blood counts are almost perfect and his pcr results are in a really good place too. But I can only really talk from my side of this disease. I cannot see inside his head or guess at how he deals with the day to day of living with cancer. So here I go - from my side.

Thanks for leukemia in my son? Definately not. But thanks for everything that has happened since he was diagnosed - Definately! For the growth in me, the courage found, the people I have met, the love shown and the international circle of support that has grown out of something so devastating in our family, just to mention a few things. My life has been enriched on a level that I would never have understood before. I have learned to cope with things that I just knew that I could not do before the diagnosis - now I know that I can and do. Yes, I am a very different person from two years ago. There are times that I honestly feel very angry and sad and sorry for myself (yes, myself too!) for having cancer in Steven. And I want to rant and rave and at times I do, and then I catch up on my reading, follow some links and stumble across someone who has lost someone they love or is dealing with something much worse or more stress. And then I rethink - Steven is here! Steven is doing well and I have to smile and breathe evenly again. And give Thanks.

So many times when I feel just down and out and low and miserable and cannot put a finger on it or shake it, it's then that one of the many people I have online contact with will drop me a line, not always necessarily to talk about cml, sometimes just to say hi and share some news or laughter or something totally unrelated to cancer in any way..... that's when I know how very fortunate I am. When they share their scared times, their low times, it yanks me out of my state of apathy and pity and puts me in a place where I can reach out and pick them up. It's a simply wonderful feeling to be able to share a piece of normal life as well, to laugh together, to just touch base with someone else who is walking in my shoes, and me in theirs.

When I am down and someone else shares their down times - it picks me up - it enables me to do better, to improve myself and become stronger! Hmmmmm Quite a thought! What an incredible circle of support and growth....

Many people think that sharing their bad times is not a good thing and this is an issue that I had a problem with, and still do at times, while writing this blog. Being open and honest about being scared, hurting, worried or angry shares who and what we are - and it can help someone else feel normal or ok and also give an insight into a situation that is not understandable unless you are in the same or similar situation. It is difficult to share these feelings and sometimes I mull it over for a good while before putting myself out there.

There have been many times that I have thought to stop this blog, especially now that Steven is doing so well. Times that it felt silly to keep on going. And then someone will write and tell me that by sharing my feelings, it has helped them. It is impossible to explain how wonderful it is to hear from someone else that absolutely 'gets it'! And then to be able to share and possibly help someone else breathe easier, feel normal or at least less alone. It does wonders for me!

Right in the beginning of this road called cml, I was worried at times, about how much of myself I wrote - I did not want to worry my family about my emotional state on top of Steven's response and results! Now I see that this is my story about something very deep and touching and I need to write it down - it's my way of getting it out. My family have learned that I will call them if I need to talk, so they can read this blog and know that I will be ok. At times I am sure they wonder about my sanity, but then that's nothing new :-)

Back to Thanksgiving. To Frank - for being there, for the love, support especially in my "frilly days", for making me laugh and helping me cry, for keeping life normal; to Steven for accepting your hero status in my eyes and for helping me through this in so many ways and for accepting my worry and mama scans; to my girls, Lisa and Joleen for understanding my divided and sometimes single-minded attention towards Steven and for drawing me into your lives even when I am drowning in this one at times. You are all so deeply woven into my soul and help so tremendously in getting me along this road.

I started listing the people and things I am thankful for and deleted the list again - geez, it got long! My family, the people, the opportunities, the love, warmth and support - for the fact that this Thanksgiving we have a full family and a full heart, once again.

A really special thanks and a really big hug to all the other Mom's out there dealing with cancer in their child. Also, a big thank you to all those writing their blogs and sharing your experiences - you all help me understand the road Steven is walking. I did not leave anyone out of my thanks - you are all in my heart.

Ok - if I don't stop now I will still be going at Christmas!

Wishing you all a really wonderful Thanksgiving!

love and light.

Friday, November 09, 2007

All's well....

Firstly - Congratulations to Adrian for winning the weblogs award of the year! This is wonderful news and a really big thank you to everyone I know that voted.. :-)

So yesterday we tootled off to the Doctor for Steven's regular checkup as well as to sort out some of the issues we had. I won't go into details, but Dr J got our point, there will no longer be two pcr tests done at the same time and we are not actively looking for another doctor :-) We sadly agreed that doctors (generally speaking) do not care about their patients, just the money. It's sad to see this and its difficult to have my child in the care of someone that I believe feels this way too. He is just a number there, someone to see every few months who occasionally arrives with a mother that is not too happy about something.

I really enjoy going to these appointments with Steven, not so much to be in on the appointment, but I love the time we get to chat on the way to and from the office. Steven chats away about all sorts of stuff. Yesterday on the way to the doctor, I had to tell him that his results were still good, going in the right direction but not pcru. Evidently I put it across to him in a way that he felt ok. At first his face got tight and he was frowning, but after a few sideways glances from him, and me burbling on, he relaxed and seemed to ok take it just fine. I really am not worried about his results at all and am really glad he picked up on that.

He will have to take charge a bit more and remind them when he goes in for his OHSU pcr's that they must not send to the local lab as well. This is good too because it gets him more involved in his care and decisions. When all this hit us, the diagnosis and the terror, I took the organising, sorting and deciphering on me. I wanted to save him from having to deal with all this - he had just moved out, just started his life in the real world and I did not want him to have this too. Now, in retrospect, maybe I should not have done this. I don't know. Somedays I think it's right - some days not. But I am slowly handing parts to him to deal with. I do love that he forgets doctors appointments, does not sit and worry too much about this and says things like his little silver z-car is his future midlife crisis vehicle, so he is keeping it! I love when he does not let cml interfere in what he does, how hard he works. I love that he has plans in his mind for 40 years from now.

All day yesterday there was a radio telethon raising funds to send kids with cancer to camp and also to help find a cure. This, of course, was on the radio when I was driving to and from meeting with Steven. Listening to some of their stories made me so grateful about everything. Yes, everything. The announcer has not got a child with cancer and he kept saying how he could not imagine dealing with having a child with cancer, that it must be so difficult, so painful as a parent to watch your child go through this. Geez, he even had me feeling sorry for myself! Until the next story aired - a couple with twins, 3 years old, both with AML. My self pity shrivelled up super quickly!

But yes, at times it is hard, and its harder when I do have bouts of self pity and "if only" etc and then I feel selfish for feeling like that. So I try not to feel selfish, then anger steps in and the selfish feeling follows that again. And so we go around inside my head for a spin. Fortunately those feelings dont last too long any more, but when they are around, they are real. The hardest part is realising that there are so few people that I can talk to about this without sounding like a full on pity party...... and even then, just verbalising or writing it sounds silly.

Yesterday, just listening to that radio show nearly got me weeping openly because of those stories I heard, because I was so grateful, because this was and is not a family I want to belong to and because it's definately not a family I want my kid to belong to. Why did I not turn that radio off? Why did I keep listening and teetering on that edge? Because that's just how life works at times now. It was both good and bad for me - but mostly good to hear through each story how very fortunate I am.

We now have a break until around mid January - NEXT YEAR! before having to deal with another test..... awesome!

Love and light and a good few smiles today
Laura took this photograph last year in Oregon - I love it - Steven navigating through life's puddles.......ok - so I am soppy! :-)

Wednesday, November 07, 2007

Not pcru :-(

Steven's proper set of results came in - the ones from OHSU. The other wonderful results were not, after all, wonderful. The doctor got it wrong - the wrong type of test was done, sent to the wrong lab. Or rather - they sent away for a second pcr to a local lab without us knowing.

So his proper results are just only a tiny, teeny bit better than the previous time. Last reading was 0.10%, this reading 0.095%. Its still in the right direction, but just not the pcru we were told by the stand-in doc. I am going to have a hissy fit tomorrow at the doc's office. The worst is that I have to tell Steven before then that the results were not right. The kid was SO happy about being negative for once.

Such is life

I need to paint a rocking chair picture - worry is like a rocking chair - takes you nowhere.

I am not really upset at the results - of course we would have liked them to be better than what they are, but the trend is still downward and Steven feels good. But the fact that it seems as if I need to stand behind these doctors all the time seems to be totally rediculous. When Dr H called to tell me that Steven was PCRU, I asked him to check, to give me the numbers, the percentage and checked again that it was a quantitative test done, not the qualitative. Doc assured me that it was the correct test and that Steven was pcru.

Not for a minute did I think that it was a test from anywhere other than OHSU. There was no reason to think that. I know that the blood was sent off to OHSU - Steven did it himself. So I assumed (there is that word again!) that I could just take what the doctor was saying as being correct. ASS (out of) U (and) ME = Assume.

Now I need to 'un-tell' Steven before we get to the doc appointment tomorrow. I think some sparks will fly in that meeting. Steven really needs a doctor that he can rely on to at least give us accurate test results!

But, as I said to a friend of mine, the sun is still shining in this neck of the woods.

love and light

Saturday, November 03, 2007

Vote for Baldy's Blog!

Hey there everyone

I follow the story of Adrian ( and his bone marrow transplant because of AML and CML - yes, the only person in the world known to have both these leukemias. He is in the UK. And his mom is wonderful too!

He has done an incredible job of video blogging his transplant and sharing with so many others the the real aspect of going through all this. He did not do this for any personal gain and has helped so many others with his honesty and ability to put into plain english what otherwise sounds like greek. He has also brought out into the open what a bone marrow transplant really entails. Really some wonderful watching and reading.

Now, wonderfully, Baldy's Blog is a finalist in an international competition - the results will be announced in Las Vegas at the end of next week. And he can do with some votes. So far he is ahead of anyone else, but com'on, lets help him get this award! I have looked at the other blogs in the medical category, and have to say that his is the most touching, personal and real. He will gain nothing by winning this award, he wont even be able to come to the USA to get it. There is no monetary value to it at all. Just an incredible feather in his cap.

Will you all please go to the site, click on the big graphic there to vote, look for the Best Medical/Health Issues Blog it's under the second heading - and vote for Baldy's Blog. Read his blog, if you have the time....... its quite a ride!

Thanks everyone..... this young man really and totally deserves this..... check out that picture of his smile while you are on his blog....... :-) And vote EVERY DAY!!! not just once :-)

love and light

Friday, November 02, 2007


I could not stand it. WHY is there always a weekend when waiting for results? The weekends feel like wasted time when there is no chance of getting the results and everything just goes on hold. Maybe one day I will treasure those times........ I hope so!

ANYWAY - I called the oncologist today to see if, perhaps, per chance, maybe the results had come in already and they had! The doctor that called me back was a stand-in for Dr J and he said that everything was negative. Of course that was not good enough for me, I want the numbers! So he said he would call back, which he did. I think the only thing I remember about the second conversation is that he said the words 'molecular remission'. And everything turned blurry and the papers on my desk picked up the tears that fell. He said that there was no sign of leukemia cells - that the right test had been done and that this was awesome news! What a feeling!

I could immediately think of 100 people I wanted to tell! Steven first, of course. Boy did he sound thrilled! :-) Then I just sat. What a feeling. Molecular Remission - those words deserve upper case. Every time.

I asked the doctor to fax the results to me so that I could hold them in my hands, which he did, and that's when I discovered that these results were not from the normal lab we send the blood to. This test was done at a Maryland, TN lab, not the OHSU lab. Oh dear. So I called back and discovered that the doctors office had also sent off blood to the local lab for a pcr. I am not quite sure why as they know we send it to OHSU in Oregon, have done for the last 5 tests now. So two pcr tests were done this time. Will the insurance cover it? Who knows, does it even matter right now?? Nah :-)

The best is to have the tests done at the same lab, so I am really keen to see what the OHSU lab comes back with - that should be next week. But this is wonderful news.......... PCRU at a local lab is soooo good. PCRU at OHSU will be Awesome. The trend is right. Down, down, down.

Tonight I celebrate those letters with an enormous smile that nothing can wipe clear.


Love and light