Tuesday, October 31, 2006

just a whisper for now.................

It looks so good.........
We got a fax that I could only read half of.
One line said BCR/ABL: negative. shhhhhhhhh. I could not read the full text of the result - but it looks soooo good! This means that the philadelphic chromosome in his marrow does not render a positive reading in the test. On diagnosis, the BCR/ABL was 98%.
We should get the full report later this week and I will do a loud post - not just this whisper.
So happy. Singing.

Sunday, October 29, 2006

Caregivers and good thoughts........

So many new thought patterns have happened in my mind while on this road with cancer in the family. Many things can, and sometimes do, drive me half insane and others just get a small smile and then I let them go.

One thing that has really struck me is how the person with cancer is very often the 'primary caregiver'. Remember how Steven asked if I was ok during his marrow biopsy? Did you read how Penny cared for all those around her, listen to so many other stories, or just listen to someone with cancer talking about the people around them - you will see.

And then you get the next level of caregiver, the ones that are really close by and keep tabs on medications, appointments, physical and immediate wellbeing and so much more. After that come those, like me (I think) that are one more step removed as in not living in the same house, but still taking care of many aspects of dealing with the disease. Almost daily I see the importance of 'glossing over' some aspects of Steven and the leukemia for the comfort of the person I am talking to. Many times when the question is asked "how is Steven?", the only answer required is a short and definate answer in the positive.... "fine! and a smile" mostly does just perfectly for what that person wants. And I am learning to leave it up to the other person to see if they want more information or not. Steven is doing very well, but as a mom, I sometimes have the need to carry on just a bit longer than the sufficient 'fine'. Thankfully we have a puppy now and she supplies many opportunities for me to get out of an unwelcome conversation - even if it was me that started it! LOL.

Another thing that has been on my brain so much lately is something I hope we never come up against in the fight against this disease. Being the parent of adult child dealing with cancer I am really aware that ultimately any treatment options are fully up to Steven. Fortunately we are on the same page with this. But I know a lady whose son passed away a good few years ago. He had leukemia - a different type - but chose to move out of state to his dad, gave up the fight, stopped looking after himself and died from pneumonia, not leukemia. She had tried to get him to stay, tried to get him to keep up treatments, but as an adult, he made his own decisions. She still cries, she still has so many 'if onlys', so many hurts and angers to deal with. I cannot begin to imagine how she deals with this. I see it in her eyes and her tears when she comes in here and we talk about him and Steven. It still hurts her so badly.

What does a parent go through when a child refuses treatment? What nightmares visit when sleep finally comes? It must be a really frightening place to be to have to sit and watch your child refuse treatment that would really take a weight off your shoulders as well as giving more hope of a long life for a part of your soul. Would it be fair to lay a guilt trip on this 'child'? I think I would have to play every card in the deck to try to get my child to get the treatment. I am not talking about terminal situations - I do have differing thoughts on those situations. I am referring to those that have a really good chance at beating the disease.

Dealing with having a child with cancer is definately a challenge on so many levels, even under the very best of circumstances, which I consider we do have. We are so fortunate and blessed to have this brand of leaukemia to deal with and not many of the others out there.

I have found myself very blue for a good long while now and finally decided very recently that I simply have to stop it. I know that dealing with Penny's death has hit me really, really hard and that I have been really concerned about the outcome of Steven's bone marrow biopsy. My youngest daughter is now is California which is an awful long way away from home and my other daughter got married this weekend. So I have had a full brain of stuff to get worked up about, but now I have to let it go and get on with the positive side of life.

I know that I can go and get a 'happy pill' and that there is nothing wrong with that at all - it might still be the way I go. But, for now, I want to see if I can pull myself out of it without the help of pills. My friends have been fantastic in hanging in there and gently, or not so gently, kicking my rear end, but always there checking on me and reminding me that its ok to worry, but that it's all about balance.

So, I will celebrate being a mother-in-law, gaining three lovely ready-made grandchildren with a fourth still 'cooking', will celebrate the success of my Marine daughter enjoying California and new horizons, will celebrate the time I had with Penny, will celebrate Steven and his health - yes, his health! I will celbrate all the new friends I have made along this road, and will fill up my happiness cup with all the many positives in my life. And there are many.

I was looking a Penny's blog again today and it was incredible to see how positive that lady was all along the way. She ended most of her blog entries with a laugh, a smile, a positive thought - all the way to the end. Quite amazing. Go and see for yourself - visit www.pensclc.blogspot.com and www.penniesforcancer.com to read her story.

Love and Light

Tuesday, October 24, 2006

I'll see you, Penny.

24th October 2006

Penny died quietly this morning and our world is a much emptier place. So many words and feelings whirring around my mind and heart but they just dont seem to want to come out in any coherant format today.

My heart literally hurts and then hurts some more when I think of Michael, her sisters, children and parents and what they are all going through. I stood in the kitchen today and the tears were falling hard and fast and then I found myself gently laughing with the tears still falling - Damn, Penny was good! She was so special that she has people all over the world shedding tears for her passing away, for how much they are going to miss her, many smiling through their tears in the knowledge that she is finally free of this disease, that she can dance again - and in my mind I heard her soft, gentle laugh and saw the sparkle in her eyes. I had to laugh. She felt so close.

She is so special and will always be alive in my heart and so many other hearts too. There is no way to describe just how incredible this lady is - go to www.PenniesforCancer.com and read her blog from there. It is an experience you will never forget. Pass the word forward - to everyone!

I was truely so incredibly fortunate to be able to meet Penny and her family. I don't know whether that makes it easier or more difficult to process her dying - I just know that I have been so very blessed by having her in my life, even if it has been for such a short time so far.

Experiencing the pain at losing Penny, and trying to imagine what Michael, her parents, her sisters and children are going through has made me more determined to help fight this awful disease......

The tears keep falling, even though I know........ even though we all know. It simply does not take the pain away.

Penny, you are an inspiration to me, you are incredible, you will be in my heart forever. Thank you from the bottom of my heart, my friend. It was truely an honor. I love you.

See ya.............

Wednesday, October 18, 2006

Steven's Birthday - 17th October

Happy Birthday Steven.............happy birthday, my boy.

23 years old! Wow. 7 years from 30. double wow! Where have the years gone and why are you catching up on me so fast?? It was just yesterday that you lost your front teeth, just yesterday that I could still tuck you in at night. Now you are a man, a man that I am incredibly proud to know, and to have in my life.

I wish you at least another 60 years! 60 good, wonderful, happy years...........

Happy birthday, Steven.
Mom and Frank

Sunday, October 15, 2006

question thoughts ......

This cml journey has had me meet so many wonderful people, learn so much and has put me on a learning, feeling and thinking curve that I could never have imagined. I now read books that I bypassed with a certain smugness, thinking that the worries in my life were over. I had a bad previous marraige and pompously thought that these years ahead were mine to love, relax and enjoy, to breathe deeply and watch how the children healed and grew into strong young adults while gently enjoying many good years. Well. That has happened. The 'kids' are all strong young adults now - one is about to become a mama soon, the other is a US Marine and the third in college and dealing with cancer in an incredible manner and Frank and I have seen so many awesome views of this continent and met many truely wonderful people - these last few years have really been great.

But my mind won't shut up and be peaceful and I find myself wobbling around these days, not quite knowing where I fit in anymore -not with the kids, but with life and all those in it with me. I have had so many hello's and goodbyes in the last few months, so many times that I have been terrified and so many days with tears and sometimes serious internal wobbles, that at times I cannot relate to people around me. Maybe its like traveling, once that has happened, it changes something inside that makes you different in a way that would never have happened otherwise. Some things have become way less important and other things way more important than ever before. I find myself totallly un-competitive, un-freaky about the small things in life and at times way too intense about others.

One subject that I am seriously stuck on is one that really is a pointless discussion - even if it happens only in my head. Is it better to have warning of ones death as in having cancer with a time left before leaving, or to die fast in an accident or unexpected incident?

Taking time to die does not seem to be the right way anymore. Once upon a time when more illusions lived in my head, I thought that this would be wonderful - finish all the things one wants and needs to, make right the wrongs, say hello and goodbye and then leave. Nice, easy and clean. That's not how it works! Things get sorted out and then more happen and need to be set right or sorted out. New plans are made so more things need to be done, new dreams appear, new horizons, new ideas, meetings, new hopes and more hello's, more goodbyes. Then you start things - how can you not? And they don't get finished. More goodbyes. Again. And the days go by. With every day comes a goodbye. Again. Then you know that there just is no way that some of the things you started after finishing the things you needed to, will now get finished. Damn. So there are now, once again, unfinished things left and now those need to be sorted out and finished. Again. Penny once mentioned that it was impossible to live today without thinking about or planning for tomorrow. Try it. I did and failed miserably in a matter of minutes....

Another day, another goodbye. People can only say goodbye so many times without falling apart, before becoming numb, hurting so much that they stop feeling or stop functioning in a way they could before. The pain shifts from the dying to those left living if this is called living. The hospital sorts out the pain of the person dying - those left behind carry a pain they never knew existed. And yet again, you have to go back again to see your loved one one last time. Another goodbye. Except that that was not the last time. Tomorrow is another day. Another day filled with pain, another visit. Another day filled with yet another goodbye. How many? As many as it takes. Too many and too few.

And everyone waits, dreading phone calls, dreading emails. Waiting and knowing that one day there will be no chance of another goodbye, no matter how painful those goodbyes are. Soon. But when? Hearts ache, guts churn, tears fall and then they stop - there are no more........ And still the dying does not happen. But another visit does, another wish, another message, another goodbye. And the tears start up again. How do you pray for someone to leave when you know it will hurt you so much when they do?

And when the end arrives, are we ready? No. We are just as hurt and devastated as we would be had it happened suddenly and we have to deal with a whole set of feelings that we never knew existed. Shocked and just as empty. How can this be the 'better way to go'? It's more like and endless agony........ But, please God, don't take someone I love without giving us the chance to say goodbye!

I guess that having cancer in a family or friend circle, starts these conversations in the mind.......it does in mine. The sadness runs so deep at times, but they say with sadness comes growth. I know I have changed, changed in ways I don't yet understand. At times I try to hang on to who I was before March this year, before cancer moved into our lives and at other times I fully welcome the changes, but mostly its still a challenge to keep my mind quiet, to 'just be' and to accept what simply is. Sometimes not coping is a way of coping too. Not a good long term solution - but good enough for a day or three every now and again.

I read somewhere one day that 'normal' is just a setting on a vacuum cleaner - now we are looking for that new vacuum cleaner to find the 'new normal' button! :-)

And we are waiting for the results of Steven's bmb - I cannot believe it has already been a week since he had that done! One week closer to seeing with our own eyes those good, wonderful and very looked-forward-to results...............

Penny - you know................

Thursday, October 12, 2006

I have no idea...........

I have absolutely no idea what having a bone marrow biopsy feels like. All I know is what it looks like on the face of my son.

Before my eyes opened this morning I wondered what Steven was feeling if my stomach was already in knots like this. And all too soon we were heading to the hospital for the dreaded bone marrow biopsy.......

One doctor started explaining exactly what they were going to do. This was too much information for my churning stomach - I know what they do, as does Steven, but he insisted in telling us in detail - everything. I could see Steven starting to get nervous and then Dr P came in with all the needles and stuff and started explaining the procedure yet again. We tried to get them to stop the descriptions, but they said they have to say it all........I pulled the chair right to the top of the bed, turned it so that I could not see what he was going to be doing - even put my hand up against the side of my face to shield any potential accidental sightings of that needle going in. The doctor did chuckle at me positioning myself so firmly.

And this time Steven had his face turned to me. It feels selfish to describe my pain and anguish when it was not me going through the procedure, but it hurt so much to see my child having to deal with this pain. His knuckles turned white, his eyes were either squeezed tightly shut or fixed wide open staring while he clenched his teeth together as the bed literally shook as the doctor did his thing. A couple of times, I wiped the sweat from his forehead, reminding him to breathe long and even breaths. Just breathe. Just breathe. There was nothing I could do to help. No words made any difference, but he did manage to breathe with me and answered when the doctor spoke to him. It really blew my mind when Steven asked me if I was ok! I guess he did not want me turning green again and I firmly told him not to worry about that and just deal with his stuff without worrying about me.

Then it was over. Except the doctor was talking about having to go back in - as one sample he pulled did not look good enough. That look on Steven's face took my breath away. Not again! And then he grit his teeth, clasped his hands tightly under his chin and we went through it all a second time. This time seemed harder on Steven. Funny how the rest of the world dissappears and the only thing that counts is that the pain leaves his face. And breathing. Seeing on Steven's face what a bone marrow biopsy feels like was totally exhausting and very emotional for me. I still cannot imagine what it feels like for him. Hours later I am still tearful at what I saw today.

And then he started shaking, said he felt fine but just could not stop the shaking. Doc seemed to think it was ok and put the bandaid on, told him to turn over, checked it again and said we could leave. This was not even five minutes after it was all done. Just before we walked out, the doctor showed us something in one of the other rooms and we stood chatting for a few minutes and I saw Steven lose color in his face - he just did not look right and I asked if we could sit somewhere for a while. They brought him a soda to drink and a few crackers with peanut butter and he sat in a chair relaxing for about half an hour. He still had the shakes so badly at times that the coke almost spilled from the cup, but he was laughing about it - still saying he felt fine, just could not stop the shakes. His color was back and his eyes were not shiny anymore so we left after a while - walking slowly. He was chirpy by now but I could see his back was sore and he said he still felt a lot of pressure. But he would not let me drive his car home, which did not surprise me at all! :-)

I would gladly have this procedure done to me every week if it meant that he would not have to go through that again! Watching his face, seeing his pain, his bravery and his incredible smile when it was all over - its too much to think about today without the tears falling.

By the time we walked out to the car, he looked pretty good again, tired, but pretty good. I would never be able to imagine what he had just been through if I had not been there. I hated being there, but would not have missed it for the world. It tears me apart to see that look on his face and humbles me when, fifteen minutes later when I asked him about sedation the next time, he says "nah, maybe not - now that its over, its not too bad." And I will be at all these procedures with him as long as he will allow..

This mama needs sedation! Seriously.......

I salute you, Steven. My son. My hero. I love you.


Tuesday, October 10, 2006

Monday, October 09, 2006

Pennies and short reprieves

Here is how I keep Penny close to me now days. On the road trip, I carried a Canadian penny in my pocket all the way. When we got back home, Frank made that penny, and a good few others, into an eyeglass holder for me that I pin to my shirt and can hang my glasses on instead of using that chain that made me feel 600 years old and got all tangled up all the time. And so Penny sits over my heart every day. It looks as if it's heavy, but thats just how the t-shirt hung for the photo.

We rescheduled Steven's bmb for Thursday this week - he was concerned about being able to do his college math test this evening only a few hours after the bmb. So Thursday it is. It was stunning to me just how much I calmed down after moving the appointment - I was dreading the procedure but also know that nothing will keep me away from being there with/for him while he goes through that again. Well, now I get a few days reprieve from those thoughts - until Thursday - then I will start revving again. Frank says I get hyper and he tries to slow me down during the day - apparently I do everything in superspeed! I don't really notice it. Much.

I then called BC/BS to try to see what I could sort out with the bmb coverage, and to my embarrasment (I had been huffing and puffing about all this for a good week by now!) discovered why it is that we are paying for the biopsies. He has a $5000 deductible that must be met first before they cover outpatient surgeries........... Once that amount is met, they will cover it. Fortunately they still cover everything else without waiting for the deductible. Talk about feeling like a fool for not reading everything properly! :-( We cannot change the deductible at all as that would automatically exclude Steven from coverage because of his cml.

When we first got the insurance, we never thought of something like this - a leg or arm break, or maybe a crash on his bike or car - not this ongoing testing. Maybe we would have made the deductible less, but I know that we are incredibly thankful that he does have insurance. Very thankful indeed. So. I have sent a mental apology to BCBS and have read my personal insurance coverage with my proper reading glasses on!

Steven has changed his work hours to 3rd shift for about a year until he has some college behind him and he can get a job using CAD. This young man impresses the heck out of me, he keeps on moving forward, making plans and really striving to do better all the time.

And I have just said another goodbye. My youngest daughter who is a US Marine left tonight to go to her new duty station in California. I know she will be fine, she is under "mama-orders" to stay safe, but we will miss her so much! It was terribly difficult to wave her goodbye not knowing when I will see her again. sniff.

I am jumping around a bit tonight but forgot to mention that Steven's blood tests came back all in the ok range - most well within the normal range and the others just a tad high or low but too close to even think of worrying about. I am tempted to go for a CBC just to see where mine are for comparison purposes - it would be interesting to see.

More another day

Love and Light

Friday, October 06, 2006

Heartache and Hope

Today Steven had his blood drawn again. I was going to go along with him, but things worked differently and I quickly told him again the questions I had and he tootled off by himself. I have not yet seen the results, but he said they were all ok - nothing major out of whack and Dr J said all was well.

And they moved his bone marrow biopsy from Vanderbilt in Nashville to Erlanger in Chattanooga! This is SO much easier for him now, especially as his work hours have changed and for all of us too. It eliminates about 6 hours on the road, making a long day longer and makes it all much more cope-able (is there such a word?). Anyway. When I spoke to Steven, he was totally upbeat about this all and said that he is not sure about getting the sedation either - said "it wont be that bad and does not take too long - I think I can do without it". Think they will give ME something?? We are going to arrive there a tad early and will definately discuss the sedation options then again. For Steven, I mean. My sedation will happen later at home with a good cold glass of the good stuff.... no discussion on that one! Hopefully the doctor that did his BMB last time will be the one to do it again - he was good!

I hauled out all my cml papers today and started studying again. I found words in some of the reports that I had never heard of and copied them to a word document to figure out tomorrow or in the near future - I just know that the folks on the support groups are going to get a bunch of questions again soon! I find that I have to relearn a good bit and that understanding all of this is not as close as it was when we left on the road trip. The brain will rev up again and I am sure I will catch up again. In the meantime, I am on a mission - Dr Druker suggested that we get all family members tested as possible bone marrow matches and that is my project for next week, to organise what needs to be done to get this done.

I have found myself very down these last few days. Out on the road I was able to put some of this in a separate compartment in my brain and made a really good attempt at 'everything is normal'. Now its back to that new normal with so many changes. One really big heartbreak in my life is Penny. She is in the final stages of her battle against lung cancer and it just breaks my heart to hear what she and her family is going through. There are so many dimensions to the end of a life here and it must be so tremendously difficult to deal with it all. When we left on the road trip at the end of July, Penny and I were still emailing multiple times a day, instant messaging and exchanging photos, hopes and the excitement of meeting. Now there is such a tremendous hole there and sometimes when someone new signs online - for one tiny moment my heart still hopes its her. I look at her picture on the side of my monitor and my chest chokes up. I miss her and her fun and her mischief and her love and her friendship so much. And that is after such a short time of knowing her. This hurts.

I am also still learning to deal with the many people that now talk to us about their cancer or the cancer in someone they know or love. It really does take so much out of me if I allow myself to feel too deeply, and if I dont, then I find myself not interacting honestly enough and that feels even worse at times. Its a fine line and one I keep falling off as I am sure many others do too. My heart breaks at the pain and loss of so many people, but I really love that people now share their stories with me. Its like being given a part of them when they tell their story.

And then I get an email from someone I dont know. Someone who is also a cancer survivor who donated to the LLS in Steven's honor. What a treasure these emails and donations are. What an incredible treasure these wonderful people are. They are who will help Steven survive, they are who help me keep my sanity. They are who will help us all get closer to beating this disease.

I am really sure that I will get to feeling more 'stable' when I see the blood results for myself, when I have disected them and seen that they really are ok. And then when the BMB and PCR results come in. Those are the big pointers that will tell us where the leukemia is going in Steven. This one is the important 6 month test. Are there any non-important tests when it comes to any disease?

My son looks good. He sounds tired but he should do - he is young, enjoys the weekends, holds a full time job, is doing night classes at college for Computer Aided Design and is now changing to 3rd shift work for the next year to get a higher pay scale. Hats off to him - I am proud of this young man that is moving so determindly ahead, and of Laura for her support, help and love for him.......

Send your thoughts, positive vibes and prayers for an "easy" bmb on Monday - its at 1pm or soon thereafter. I had forgotten the rollercoaster ride these tests create in me. I cannot imagine the feelings inside Steven.

Please say a prayer for Penny and her family. Her blog is being kept up by her husband Michael and it really is worth reading. She is an awesome woman with an incredible family and one heck of a story. www.pensclc.blogspot.com


Sunday, October 01, 2006

New normals to find........

It was absolutely wonderful to see Steven when we got back home! I drank in how he looked, trying not to show him how I missed doing that. Most of our family and some of his friends, were able to walk in the Light The Night Walk in Chattanooga with him and said it was wonderful!

We are back from the Roadrunners trip, all unpacked and almost used to being back in the house, getting used to having a little doglet as a new addition to the house - she's sooooo cute! And we re-open the shop again tomorrow morning - no better day than a Monday to start a new week - and judging by the emails, phone calls, the people pulling up here yesterday and today, we will be busy for a good while. Much of the trip has already started fading - just the people are standing out in my mind. Time to print the pictures!

Steven has his bone marrow biopsy scheduled for this month up in Nashville. Unfortunately it is on a day that he has a serious college class so I am going to try to reschedule and see if we cannot have it done here in Chattanooga, like last time. This month Steven has his 23rd birthday, Lisa gets married, Joleen comes home for a few days before being sent to California for the next step of her Marines life, and Lisa adjusts to a pregnancy in its second trimester.

When Steven was diagnosed with cml in March (note that cml will from now on always be referred to in lower case letters - a power play on my part!), we already had the RV vacation planned and then I was able to concentrate on making it more than just the original vacation; Steven was, and is, doing well, and I had many other things to slide my attention on to.

Now we are back again. These two months have been a wonderful reprieve from dealing directly with cml and in many ways it has made things easier and in other ways I have felt myself purposefully piling on the coverings trying to bury the worry while out there. So much of the road trip was saying hello and goodbye to people. Penny, who I won't see again, Debs and her family, Gale and so many others. I listened to many stories of other people - some so sad I had to cry and my nails got shorter, others so full of hope and success that I could put my worries about Steven far away for a day or three.

And I find myself starting to rev up again. The next blood test is coming up and the PCR and the bmb - and the long wait for those results. I feel my chest closing up just typing these words.
I know I am tired, I know I am fumbling around trying to find new normals, I know I am affected by Penny's condition and I know that these flippin tests get me terrified - every time!

Dr Druker advised us to get all family tested to see if someone is perhaps a bone marrow match for Steven - this entails contacting people in South Africa too and I am hoping to get all the local family here together one day soon for testing. I know they are all keen and there is a wonderful hope in each one that they will be "The One!" That would be absolutely, positively wonderful.

I also need to get back in the swing of things with the newsgroups, how others are doing and all the new information that has come out since we left. I tried to keep up while we were gone - but was not really successful at all.

So much to do and hopefully that too will help the time to pass until the test results come in.... I must ask Steven how he deals with all this. I will start walking again soon!

There is still so much to say about the roadtrip, the wonderful people that have now become a permanent part of my life, but the words won't come - maybe they never will but that does not make those feelings and emotions less important. It's time to look forward to the new adventure of life right now and to hunt that elusive 'new normal'. I read somewhere that 'normal' is only a setting on a vacuum cleaner - I go with that.

You can see some of the pictures from the roadtrip at this address: http://pg.photos.yahoo.com/ph/roadrunnersusa/my_photos

Please visit Penny's blog and read about this incredible woman and the strength of her family: www.pensclc.blogspot.com. And don't forget to look at, and pass on to everyone you know, the www.PenniesforCancer.com web address. This site is an ongoing project to collect funds for reasearch for both leukemia and lung cancer - all money collected goes to the appropriate organisations........

Thanks, so many really big thanks. And many thoughts and hopes and wishes for Penny and all her family....... such a difficult time for them all right now.

Love and Light