Saturday, December 23, 2006
What a Christmas gift.
I dont think there is a family out there that has not been touched by cancer in one form or another. I thought we were one of those few and fortunate families, but I had put to the back ofmy mind my aunt who passed away from cancer when I was a teenager, a sister in law who passed when I was in my early twenties and my maternal grandmother who died from leukemia many many years before I was born.
This Christmas is the first year that we all have cancer full in our faces. But it will not go down as 'our first Christmas with cancer' but rather the first year that we have seen what is really important and the beginning of a new way of living, despite the fact that cancer is now thoroughly in our lives. We will learn each day to find joy and special times and be thankful for the extra depth and friendships this is adding to our lives. I know that we are all really, really fortunate that it is this type of leukemia and that Steven is not only reacting to the medications so well, but it handling it all apparently very well. I heard the other day that he often forgets he has this disease, and that was about the best thing I could have heard! :-)
It was with a really thankful heart that I wrapped all our Christmas gifts today. I took a moment to think and try to imagine how it could/would have been had the cancer been of a worse strain or Stevens reactions to his meds, non responsive. I thought of all those families that will struggle with the empty place in their homes and hearts this Christmas especially, and I could only be deeply grateful that I could wrap those gifts with a smile and a prayer of thanks.
Of course I thought of the many other people I have met or who I talk to since April this year. Penny's family are so much in my heart and mind as are the other really special people who have helped me through these past nine months. Trish, Debs, Gloria - just to mention a few - thank you! After knowing Penny for such a relatively short time, I dont quite understand how I can miss her the way I do. But I do. So much good came out of such a short space of time of knowing her and that empty space she left is large. Miss ya, girl. I think of you so often.
So as I wrapped the gifts to go under the tree this year, I realized that I had been given so many special gifts in the form of kindness, love, laughs, friendship, understanding and so much more, all year through - so much has been added to my life in such a short space of time.
Instead of it being a 'bad year', 2006 will go down in my memories as the most incredible year yet. The absolutely most incredible year filled with the most wonderful, amazing people.
Steven - you are still my hero!
Love and Light
Saturday, December 16, 2006
So when today grew good and warm, out came the ladder and up I went. The wrap was pretty easy to get off at first, it was stuck on there pretty well but peeled of smoothly as long as I pulled gently with even pressure. That changed after the third blister popped! But it was good. When the lettering of PenniesforCancer.com came off, I spoke to Penny, thanked her for riding with us and everything else too - it was lovely up there on the top of the ladder in the sunshine talking gently.
As the sun moved, parts of Skilpad got shaded and the wrap became stubborn, clinging firmly to Skilpad. Frank moved her for me while I ran cold water over my hurting hands, but I was keen to get out there again. Frank knew that this was something I needed to do by myself - at least for the most part and he left me to do my thing while building me a jerky (biltong) drying box. It felt as if I was really pulling leukemia out/off, relegating it to an ugly pile on the ground. It felt good to see everything good and clean where the words were before.........was strangly cleansing and very therapeutic for me.
At one point in the middle of pulling the big word 'leukemia' off, I realised that Steven has had to drive past this every day on his way out in the morning. What a way to start his days with leukemia literally in his face at the start of every one! Wow. And then I really let rip and I found myself humming and smiling while blisters popped into sticky vinyl wrap! :-) Lovely! After hours of tugging at the vinyl, Frank joined me and grew his own blisters....... It was all good.
And now Skilpad is as she was before. If only I could make that happen for Steven too by the simple act of taking off a wrap. But he is doing so well that I am really not going to complain or anything at all.
I know for a fact that so much more could have been done with fundraising with that RV if only things had been done differently... but I looked inside myself and knew that we had to move forward and that that included removing the wrap. I am really glad we did that and we were really fortunate to have such warm weather so late in the year that allowed the relatively easy peeling of it.
I carefully cut out around all the names that were written on the sides and have those put on backing paper, in the shop. I am going to put them in the photo albums that I will be making about this trip. Right before starting to strip the wrap, I did my final walk around, dragging my hand over each name and sending positive thoughts and really big thanks to each one. Some people I am still in contact with but I will always hold each one of them close in my heart. I still say that those people who;s names were on our sides, were what truely made that adventure incredible.........
And so the RoadRunnersUSA trip has truely ended now. It was time.
Big smiles here tonight.
Monday, December 04, 2006
At times I wonder if its just life, or whether this cml thing is what is getting me down. And then I realize that the more I think about it, the less I am living, so I live without cml in the topmost portion of my mind most days and find it easier than before. The new normal? And this is even with blood tests due this week - doing good, I am! :-)
Something had been playing on my mind since we were in Oregon and the appointment with Steven and Dr Druker and Carolyn . I have not been able to voice it up till now. When Steven was diagnosed, my "mother instinct" kicked in and I 'took over', trying to protect him, to make it easier on him. I poured over the results and tests and worried etc, telling Steven that he can "leave it all up to me and get on with his life."
Dr Druker and Carolyn taught me something tremendously valuable - it cannot work this way!When we were there Steven was, rightfully, the person both Carolyn and Dr Druker spoke to and focussed on. At first, and I mean for just the first minute or three, I was almost 'put out' and then it sunk in - I cannot take this away from Steven and he HAS to face it, deal with it together with the rest of his life! And I have to let him have it..... I have to help him deal with it not try to shield him from it. Cml is with him as permanently as his right arm is and he better learn all about it and not allow anyone to totally shield him from this.
That was a very serious moment for me. It made me realise that this is not my disease and that the very best I can now do as a mother is to help Steven cope with it - not try to take it away from him. Now, when he goes to have his blood drawn, he brings the results to me to file and has started discussing them and asking questions. Maybe one day he will even read the support boards I read and get so much help and information from.
And its getting colder here, life is moving on. Christmas is arriving, Steven is looking great and loving being back on day shift, as is Laura! He has a new job within the same company and will not be doing the lifting of heavy books as he was before which will hopefully ease off the knee joint pain he has been having. His college is going really well and I have decided not to let this be 'the first Christmas with cml' but to simpy let it be another Christmas where we will all treasure everyone that means so much to us.
Today when I signed in to write this update, I remembered that it was because I chose blogger.com to use as a blogsite that I met Penny - because she made the same choice of blogspots to use. Funny how she pops into my mind so many times a day.
Not a day goes by that I dont realize just how fortunate we are in all aspects of our lives, or how proud I am of Steven and all his friends and Miss Laura too for getting on with life in a most normal manner. Truely fortunate and extremely thankful.
And for everyone reading this - you have a reason for coming back, or for popping in here for the first time, may whatever it is, be gentle on your soul.
Love and light
Saturday, November 25, 2006
I should not laugh - but I do and its not out of mean-ness, but almost from relief that there are people that are not having to deal with cancer in their lives and therefore really don't know how to respond! Its a good thing to see. It's not that people want to avoid the situation as much as I think it is that they literally don't know what the 'right thing' is to say. I was one of them once upon a long time ago...... before cancer was here to stay.
I think the most surprising and sad thing is the number of people that respond with their own cancer story - one that they, or their parent/child or friend is the main character. So many of those people - too many of us. Way too many.
How Steven handles meeting people of pre-diagnosis, I am not sure. I will ask him one day, but I do know that cml is not as much in the forefront for him as it was a few months ago. Thankfully.
Tonight I will still savor that good moment of someone out there understanding........ and be thankful for that, even though it is bred in their own rough road.
Love and light to everyone reading this.
Although everything is looking so good with this disease and its control, I am finding a big hole in my life. This life of mine was wonderful before the leukemia diagnosis, then it was filled with the scary stuff, the terrifying stuff, the wonderful meeting of amazing people, the travel and more people. So much excitement, so many ups. And now its all evened out again. There is a very deep hole left by Penny, I still talk to her and its strange how, at times, I even expect emails from her! lol. But the big 'high' of all the excitement created has gone and its left me scrabbling at times for a handhold on the good stuff that is all around.
This sounds so selfish. I am really glad that things have calmed down but am struggling to find this new normal, struggling to balance the good and bad of cancer - and there is definately good that has come from this. I will not ever go as far as saying that I am glad Steven has leukemia, but I will definately say that I have been tremendously fortunate in the good that has happened to me since his diagnosis.
The shop is very busy and everyone and their neighbor has a sick computer that needs to be fixed - this is wonderful and keeps us very busy most days........ I have also printed out hundreds of photographs and then are all stapled on the wall all over the shop. The photos from the past trips are now going into albums - into retirement, and these new ones will keep us going for a while again. just a while.
Steven is due for another blood test this coming weekend - end of the month and a doctors visit with PCR in early January. But first comes Christmas. My wish this year is that we can all look at this as Christmas and not 'the first Christmas' with leukemia. There are so many "firsts" with this disease in our lives and we are tremendously fortunate that we have this without the "lasts" that go along so many times when cancer is around. It's all back to front with cancer. First you get 'the last birthday/Christmas/Easter/Halloween/etc", then you get to do "the first birthday/Christmas/Easter/Halloween/ect" without them. It's all wrong...........it's all wrong.
Thanksgiving has just passed and it was incredible to think about how much I have to be thankful for........ just a short year ago, I would never have dreamed that I could be so fortunate and have so many thanks to give. This is not despite the cancer, its really because of Steven's leukemia. I am especially thankful that the circumstances allow us all to breathe easier now and that Steven is reacting so well to the Gleevec.
I especially love a quote I picked up from someone on my favorite support board - the Asian CML Group - "the point of power is always in the present moment."
Not in the past. Not in the future. NOW! Thats all we can do - deal with this moment, be strong in this moment and love the very best for this moment. The rest will simply have to take care of itself until I get there..........
Love and Light
Monday, November 13, 2006
The one sure thing is that your feeling us uniquely yours. A feeling may be based on incorrect information but a feeling is not wrong. It just is. And if you discover its wrong for you right then - you can change it. Or not. Or it might change all on its own and surprise you too.
People can tell you how you should feel in certain situations, or you can expect yourself to feel a certain way in some situations. And then you can add to those feelings by the confusion created when you don't feel the way you think you should! Phew - now I am feeling confussed
:-) I can easily run myself ragged just thinking about thoughts and feelings.
When Steven was diagnosed with leukemia my feelings were the worst I could ever imagine - they went beyond the raw, ragged, open-ended-nerve feelings. Some people even said I should "stop feeling like that - all was going to be alright, right?" It was/is 'the good cancer' and I did not have reason to feel like that, they said. I did note that everyone that said that, had no direct dealings with cancer........ I don't blame them and am not angry at them, but they did cement sincere hope that I never utter those words to anyone else again.....
There is no way I can understand the feelings of others, or why they feel that way - so much is built up from things that happened long ago mingled in with the 'now' and I would be lying if I said I could even imagine what anyone else is feeling - unless they are exactly in the same situation as I am. Is that even possible?
But back to my feelings. Somedays I am really angry at what goes through my mind. Surely I should be able to control what goes on inside my head and gives me those feelings, but reality is that sometimes I simply cannot. At times my mind goes like a rollercoaster on a downhill slope and I can even hear those wheels turning and there is no way to stop it until it gets to the bottom and glides to a stop - by then I am really ready to fall out of that car! Those are the bad days, the days that tell me that no matter what good news is going on, no matter how wonderful everything looks - its cancer in my boy and I cannot stop it! I hear that word over and over again, just like the train wheels on that track. Those thoughts can spoil birthdays and visits, can spoil walking down memory lane and definately ruin whatever day they come into! And it is not always possible to stop those thoughts.........not always.
Then the guilt days arrive. Those are the days when I feel great, when I see the photos we took on the fundraiser trip and share the wonderful memories. Those are the feelings that arrive when I see how much I have grown and learned and enjoyed , when I think of the amazing people I have met since Steven's diagnosis. These feelings creep in when I think of my life and all the positives that have come about since March. At times when I think of all these things I wonder at how so much positive can and does come from a cancer diagnosis. It's strange and almost rediculous to feel guilty because my life has improved because of this cancer in my son's life. But those feelings happen too and I can only hope that Steven feels some of the positive things that he,and others, have made happen in his life since his diagnosis.
And then I have my pure angry feelings which is really frustrating because there is no one to blame for this cancer and nothing to kick against ..... I am angry that Steven has this, angry that Laura has to deal with this too and angry that I have to deal with it, just to mention a few! There are days when I don't want to deal with it. At all. So..........there are days when I don't. There are times when I put off even reading the support groups and days when I simply cannot because my anger at even knowing that they exist gets to me. So I dont. Hopefully all those there know where I am coming from and dont think I am ignoring all their news and happenings!
And yes, I have had a day or two when Steven or cancer has not crossed my mind....is that bad? I dont think so, but yes, those guilt feelings crept in about that too. How could I not think about my child that has cancer?? Now, after much thought, I think its healthy. Its a subconcious way of staying strong, with going on 'as normal' and knowing that he is in a good place right now. As it was before the cancer, may it continue on forever after the diagnosis - that would mean that Steven stays in remission! The immediate trauma of dealing with the diagnosis took everything out of me, blew most of my other thoughts very far away. But now those other thoughts are finding place in my mind again. I don't think Steven would begrudge me this - if he knew that I had agonised over it! I think its a natural process.
These are all feelings that I am learning to look at, acknowledge and try to put it in its place. I believe that this is all part of searching for, and hopefully finding, that 'new normal'. Now if I could just train those different thoughts and feelings to have 'visitation limits and times' ........
When I feel wobbly, I no longer try to keep it inside. Do you know that those feeling simply thrive inside one and grow at a phenomenal rate and then make one explode like a shaken champagne bottle! So now I let them out as they arrive. Mostly. When I can. And its working for me.
And, I think most importantly, I am learning to accept that my feelings are simply that - mine, and they are not wrong, no matter how intense or light. And I move forward with that knowledge, learning that they are all ok and acceptable at the minute they arrive, or even if they simply don't arrive when I think they should! Round and around and around I can go.........
Discovering my feelings about my feelings has been quite a step forward and hopefully one day it will all make sense.
Until then I will carry on learning that dance......... one feeling at a time. With a smile tonight.
Tuesday, November 07, 2006
The results are wonderful, really wonderful and I just dont understand my 'inner quietness' about it, its not a peace I am feeling but rather the lack of the "yippppeeeeeee" this time. It's not as if I am not happy - of course I am. It's not as if I am not relieved or thankful or anything positive, it's just that that big thankful sigh is not there - it feels flat. Maybe its something to do with trying to get the PCR results in writing, or maybe I am just getting used to this ride - I wish! :-)
Steven and Laura were here yesterday and they both look gorgeous! It is wonderful seeing this young couple moving forward, of course they carry their worries but they are doing it with such strength and determination and smiles that it's a lesson in itself.
Penny's memorial service was last weekend and it does seem as if I am taking her passing very hard. She and Steven are kinda intertwined in so many ways - it's through Steven and his leukemia that I met her at first, the RoadrunnersUSA trip was in honor of both of them. And she was my friend. I miss her lots, and then some.
The weekend before, my eldest daughter got married - looking beautiful and making me instant "Granny Annie" to three beautiful little girls. They are a lovely young family! And my youngest daughter moved to California continuing her Marine career. And both Frank and I had flu.
So it has been a hectic and emotional few weeks for us all and maybe all this plays a part in the lower excitement level at Steven's results.
I have to say something about the support groups I read daily and know that I can go to any time I need some advice, calming or someone to talk to... When Steven's results come in, its never possible to get the doctor on the phone to clarify some of the terminology, so I type the questions to the Asian CML support group on the internet. There are often multiple replies of support and Anjana or Roy, and others too, will always come back with the information needed to stop my nailbiting. Debs is also there to help understand what I am going through while waiting for the answers. This support is totally priceless. Totally priceless. The support groups have a search feature where I can look for any other posts to read before posting my questions, and to learn the things I need to know about the results. Again, this support is priceless and I hope everyone that is going through difficult stuff, finds a group as wonderful as the ones I have found.
So one set of testing has passed, and the next one is already approaching. But we do have a good few weeks till the next CBC and months before the next PCR test. So we will all move on again until that climb in the 'worry factor' starts again.
I was just thinking about some of the roads we travelled while on our trips to Alaska and Canada and out west. Many roads were narrow, bumpy, no barriers, curvy with some reckless drivers thrown into the mix. This is life too. Sometimes it seems as if the roads in life are simply endless and not safe and rougher than we want with some really scary happenings along the way. But we got back from each of our long journeys safely - and we will get through the rough roads in life too.
Hiking up the Zion Narrow was also a lesson to think of. There we were clothed in only shorts and t-shirt, wading up a canyon at least knee deep in water much of the time, not knowing what was ahead of us around that next corner. Of course there were dangers there even though many others hiked that canyon. There were always warnings of flash floods, twisted ankles, serious falls etc etc., but that did not stop us either - we moved forward looking ahead to the next beautiful view, at the same time feeling the blisters in our feet and adjusting to freezing legs. This is the way life should be lived - looking ahead while dealing with what is happening in the 'now'.
If we sit still and miss out on life because of the pain, or potential pain, along the way - we will miss out on life. The words on Penny's blog read: "And when you get the choice to sit it out or dance.....I hope you dance"
It's a learning curve, this dance, and not always easy at all - but we would lose out on so much if we did not at least try to do this much of the time.
And so we will dance again...............one step at a time.
Love and Light
Tuesday, October 31, 2006
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
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
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.
Wednesday, October 18, 2006
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
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
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
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
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
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
Monday, September 11, 2006
After a good nights sleep on all our parts - gosh I had missed them, and I now missed my girls too........ Anyway, after a good nights sleep, a good hot shower we all headed down the road to the bus stop. We had to walk almost a mile to get there and there was no 'park 'n ride', but that was ok - gave us a good time to chat and joke and look at all the houses along the way. The bus ride was a much more comfortable way of getting to the hospital than the way we had tried. On Tuesday we had made a valient effort to find our way up to OHSU by bakkie - that did not work out and once we missed one turn off, we discovered plenty one way roads that all led in the opposite direction to where we needed to be. Once we found our way back on the interstate, we both agreed that the bus or even a taxi would be a simply brilliant way to get there for the appointment. When we eventually got home, I looked up the routes and bus stops and got the solution - tri-met! This is an amazing network of buses that travel all over Portland, taking one easily from one end of town to the other - no stress. Just great!
So we rode the bus through backroads and byroads of the suburbs of Portland, through the center of downtown and up what is also known as "Pill Hill" to OSHU - Oregon Science and Health University. The hospital is enormous; the veterans hospital and childrens hospital and what looked like a gazillion other buildings and houses littered the hill. When I say hill, I mean Hill. The roads up to the hospital are steep, narrow and green - trees drape themselves all over and its rather pretty. Then you hear the bus driver yell "next stop - OHSU!" and almost everyone on the bus gets off. The bus left and we found ourselves in a puddle of people standing around in the shadow of enormous buildings towering above us. Which one did we need to go to? The map we had of the hospital did not, right at that moment, make sense to any of us. We were all a tad hungry were about an hour early and wanted to know which direction to head of in. Soon we found a place to grab something to eat, drink and use up a good many of the excess minutes...... Steven and Laura had grabbed a few car magazines at one of the stands - they were all free for people to look at while waiting - and we sat, enjoying some quiet time before the appointment. We had asked a few people how to find Dr Druker's office, had walked there just to make sure and enjoyed the quiet time now.
Jennifer H greeted us at Dr Druker's office with an enormous smile and beautifully friendly attitude which made us all so comfortable and even more relaxed. What a difference an open smile and good greeting makes. Thanks Jennifer - that really counted for so much! Carolyn Blasdel came in to talk to Steven first, asking about side effects and get some history and details about his CML - she was really amazingly easy to talk to and I saw Steven really relaxing quite a bit as she put him in her headlights and connected. Then Dr Druker came in and explained CML to Steven, explained what he felt about Steven's reactions to the gleevec, gave his recommendations. He really has a way of making this all totally understandable and we all felt as if we now had a much better idea of what sort of response was a good one..... Steven fell right into that category - a good response to gleevec! We had known this before, of course, but it was so good hearing it from the best! The whole meeting was a good confirmation of what we had thought before. Steven was diagnosed in the early part of CML which gave him a really good shot at getting to full remission - not cure - within the desired time. His response to gleevec has been right in the expected and desired area. Dr Druker did not recommend a bone marrow transplant at all - especially as his response was so good. He did say that he was really keen to see the results of Steven's next bone marrow asperation, which is scheduled for 11 October. This will tell us what the cells in the bone marrow itself are doing. It will give us a really good picture of whether the leukemia is simply being controlled or whether the leukemia cells are getting less. Before this meeting, we had been under the impression that maybe we could simply have him do a PCR test and leave the marrow biopsy for later. Now we fullly understood the need to do this 6 month check on the marrow. Obviously Steven is not keen on getting stuck in the back again - I don't think any sane person would be, but at the same time we are all keen to know what is really happening with the leukemia.
Dr Druker did stress that it is important to get the full information of how close a match Lisa is to him and also to get others in the family tested, just in case a bone marrow transplant is needed later on. Laying the groundwork. Its going to be a trick to track down some family for testing but it really is worth the try. In the meantime, an ongoing world wide search is being conducted, looking for a match in case none of the family matches. It would be a really good idea to have all these building blocks in place if ever they are needed. Dr Druker did say that he is not recommending transplant as a first line course of action with CML anymore as gleevec is really doing wonders, Sprycel is already out and yet another drug is due to be released soon too. He did say that they are working towards a cure, could obviously not promise one, but would certainly be trying their very best to get there.
He said that Steven should carry on with his life, that there was nothing that could be pinpointed that could be blamed for CML or anything that could be done that would help 'make it go away'. His advice was to live life the best he could, live life to the fullest he could but obviously keep an eye on the CML closely, not to miss his meds and keep going for regular testing.
We did not have any blood tests done as Steven is scheduled to have all that within the next week anyway and its better to have all that done at the same lab. We all came out of that meeting with Dr Druker and Carolyn feeling really good. Steven has really good doctors at home and in Nashville, but it was really special to get confirmation of everything from this team, absolutely no disrespect to Steven's local doctor and specialist at all!
It was really fantastic to have Laura, Steven's girlfriend, along for the appointment. She is the one who has and will notice the little things changing and her input was really important. She noticed that before gleevec, Steven was often hot, now he was almost constantly cold; she noticed that his energy level had improved dramatically and other signs too. It was good that she could hear the positive message that both Carolyn and Dr Druker gave. It was really important that she shared this appointment, besides, it was a pleasure having her here with us too!
So, although we did not manage to work it out with Corporate Angel Network for flights across here and they had to take 6 different airplanes to get here and back, they had a blast! they loved the flights with window seats all the way here and were still enjoying each other's company by the time they arrived. The appointment went great and this put us all at rest and able to head to the beach with lighter hearts and sand-yearning feet. We had two days on the beach together.
Love and Light
Especially to U2 of the U3, that are not here!
Annie and Frank
Sunday, September 03, 2006
Standing at the foot of Mt Ranier today, I was thinking how small we all really are, and that no matter what, that mountain will still be there in some form or another. Some things are so permanent and others so absolutely, and sometimes frighteningly, non permanent. I found my feelings flip flopping between being relieved about that and being ticked off about it.
I am way past my time and need for a 'kid fix' - its been over a month since we have seen the U3 group. Joleen is now a US Marine and in North Carolina doing her thing up there, Lisa is working full days and dealing with the early and sickkie feelings of pregnancy and Steven has started school and is working many hours overtime too. They are all doing really well with their things and I wish I could beam into their lives just for an hour or three, give them each a beeeeeg hug and then let them get on with it again and beam back here....
Anyway, Steven and Laura fly into Portland on Wednesday 6th. The flights with Corporate Angel Network did not work out so they are flying normal commercial flights both ways with three connections each way! Its going to be interesting to see how they enjoyed it all when they get here.......... Laura has never flown before and Steven says he has had his hair cut good and short - LOTS to chat about when they get here. I just know I am going to cry when those two get off the airplane!
Now I need to go and sort out papers again and get all my questions and ducks in a row for Thursday morning! I hear that there is a bus from the campground that will take us all the way up to the hospital - glorious! No traffic worries........ And, as a serious bonus - the bus will bring us back too :-) ......... now just to make sure we know where to catch it.
Love and Light
Monday, August 28, 2006
He is not sitting still at all and we are so very proud of everything he is doing and the fact that they are moving forward in their lives and not getting stuck with all this going on.
Both he and Laura will be flying out to Portland early September to meet with Dr Druker on the 7th September. We will meet him there and hopefully get them to the coast for a few days before they fly back again on the weekend. Steven does not want to miss his first long lecture of college so it looks as if the tentative plans we had for Corporate Angel Network to fly them out won't work, but thats life and we are now looking for flights out to Portland on a 'regular jet'.
I will update both this site and the other after the visit with Dr Druker - we are really looking forward to meeting him! And I am looking forward to seeing some results with my own eyes, its almost like a craving - I need to see those blood numbers again.........
So, all appears well for right now - lets hope it keeps on in a positive vein foreverrrrrrrrrrr
Love and light
Saturday, August 12, 2006
Cancer has touched me (obviously Frank too) through Steven, deeply. When I first started researching and trying to find some way of dealing with having cancer as a direct part of our lives, I met some really incredible people. Penny is one of those really special people. I have been so incredibly fortunate to have this lady in my life, even though it is for such a short and difficult time.
When we met her in Edmonton at the beginning of this journey, I felt so comfortable with her. She was going though some really bad pain and her quality of life is not the way she wanted it to be at this stage at all. It was so difficult to watch this lady dealing with all of this. It broke my heart and at the same time, gave me so much strength.
And then she showed me a knob of cancer that sits right below her left rib cage. With her permission I touched it gently. I touched cancer. Cancer has touched us and changed absolutely everything, our whole world is different - yet when I touched it, nothing changes! It was shattering to me to touch that bump, to see the look in Penny's eyes. It made it all so absolutely real and unavoidable. Her eyes told the story. My heart, stomach and soul clenched at that touch and I could not begin to imagine dealing with that every day. I had to tell myself just to breath. I don't know whether holding it together was good, or should I just have let it all come out and cry right there? I did not cry then. I cried when we left Penny's house, I cried when we left Edmonton the next day and I cry now. But it was too deep to cry then.
I think of this every day and I know that Penny is trying to control her pain and be able to live the very best she can for as long as she can. I don't know how. I read the cancer support boards whenever I can get online, I hear that others have lost the battle with this disease and I know that Penny won't be with us for too much longer. It breaks my heart and at times I feel like I am drowning. There are times when I am sorry that we have the RV done up like this - cancer is in my face all the time! But it's in our lives. It's never going to leave. Never. So I had better find a way to make those days better and be extremely grateful for what we have and deal with the pain. I am tremendously grateful for the people I have met so far, for the laughs, the sharing and for the learning - even when that hurts so much.
Writing this makes me feel selfish in a way, but I find it difficult to deal with it too - and I think this is an important side of this disease - no matter what version it is - there is always someone 'on the outside' learning a new normal. There are many days when I can handle all this very well and then there are days when I want to crawl in a corner and go back in time - till when? To a time when there was no cancer? So much learning and growing has happened since March 6th. Lifetimes have passed and I am no longer the person I was before then. One cannot go back.
Steven deals with the leukemia in what appears to be a very strong way. He does not seem to let it get him down, and he has become much more outgoing since diagnosed. I hope he realizes now, at his relatively young age, that life has to be grabbed and lived to the fullest - there is no time to waste at all. He has to learn to be strong enough to share his 'scared' and worries with someone - its too heavy to carry alone. Those bad days come, even in the good times. It is impossible to ignore the fact that he has leukemia, yet it does not seem appropriate to ask him about it all the time. And then I don't want him to feel that I am not interested in how he is doing or coping or not. It's a very fine line to walk and one that gets played by ear day by day. He is very patient and understanding and open with me when I do go down that road.
When we were visiting Penny, I had a million questions and she was also fantastic in answering them. I think it is natural to 'pull away' from other people when we are not feeling well, and I had noticed this in her. I was hoping that she knew that I still cared about her and missed our earlier days of being able to joke more and be a lot more lighthearted. Was it just me that lost the lightheartedness during the last few weeks as her pain got worse? Did I get too serious? Was this something I should have tried harder to maintain or was it ok to lose the light side in our talks and emails? I already miss that lady so much!
The names on the RV mean so much to me. Most people shared a bit of their life and trials with me and every day I do the walkabout, sending them happy vibes, good results and happiness. It's like being entrusted with a little piece of each of them. Maybe I am reading too much into this all, but that is the way it is. When we saw the aurora the other night - I stood there in wonder of this display of nature and thought of all of those battling any type of cancer and wished I could share this wonder with them all.
We carry my son's name, my grandmother's name and my sister-in-law's name on the side of the RV along with all the others. We have children's names, mothers, fathers, grandfathers, grandmothers, friends, sisters and brothers, as well as those that have lost the battle, on our sides as we drive these roads and see these wonders. How could it not be an emotional experience to see these names daily? So much hope is in each name, so many stories, so many days and nights with tears and worry and so much joy and strength and hope too.
There are days when it seems strange that life goes on relatively normally despite so many people dealing with this disease. But there are more days that it is starting to feel abnormal not to meet up with cancer in some or other form. The new normal. Maybe one day it will fit like a comfy glove and I will also get that look of peace that we saw on a lady at Vanderbilt Hospital who was fighting her third bout of cancer. She was amazing!
Why does it seem like all the nice people get cancer? Do people become nice after diagnosis? Or did I lose sight of just how many nice people there are in the world? My life has become so rich since Steven was diagnosed. I have made firm friends with people that we have not even met yet - people that truly care about us all, despite the fact that they are also learning to live with this illness in their family. Debbie and I have really helped each other along and there have been many days when I know that no one else could understand what I was going through (her 19 yr old daughter has CML) - a quick email to her and I could breathe again, knowing that I was, after all, normal in feeling the way I was. I know there are many others out there that are going through what I am and I feel very fortunate to have clicked with a few of them that are simply wonderful!
Just the other day while stopped at a gas station, one guy asked me about the RV all wrapped. When I told him that my son, Steven, has leukemia, it hit me all over again. I could not say any more. It turned my gut and twisted my soul all over again. God, it hurt! A few minutes passed and that feeling faded back and I could think again. This does not happen every time at all - just when I least expect it! Does that ever stop? And that's me - what about for Steven? Maybe I should take up Lamaze breathing exercises……….
Ok - that's my guts spilled for a while. Funny how writing it down spreads the load and un-clouds some of the issues.
Love and Light
Wednesday, July 26, 2006
I have a seriously slow connection and it wont let me get into this site easily. The direct links to these sites are on the left of this page or click on the links above.
Love and Light
Monday, July 24, 2006
We had Steven and Laura in here today, showing them how to handle the bills and alarms system and the many other little things that need to be taken care of while we are gone. Steven is looking really well and is looking forward to starting college in late August. He graduated 4 years ago and has now seen the need for a degree so is going to Chattanooga State College to study CAD - Computer Aided Drawing/Drafting. It's a two year course which he will have to do in evening classes as he works full day and cannot afford not to, but he is going to give it a really good try. He has always worked for everything he has and realises that he will give himself an even better chance at a good life if he has a degree. We are hoping that some of the tiredness from gleevec leaves and that he will do ok with the extra load. What a 'kid' this is! My youngest daughter is a newly graduated and stunningly beautiful US Marine and is leaving for North Carolina on Monday evening for the next step of training. My middle child is getting married in late October and being on this trip will stop us from being involved in much of the planning, but she also has a goodly amount of sense and will do just wonderfully. I am proud of all three my children and prone to share.... :-)
Here are some words that I will be using during the trip and in the updates. .
Bakkie. This is the pickup truck, the Chevy S10. Also known as "little Skilpad"
Skilpad. This is an Afrikaans word for a tortoise. Afrikaans is a language of South Africa where I was born and raised. The motorhome is our "tortoise" as we take our house where we go. Our first Skilpad burned this past Christmas Day when we were on our way to Florida. This one is named Skilpad 2, or SP2.
Biltong. This is beef jerky that we make.
U3. This is when I refer to my three 'kids'.
If there are any other words I use that you don't understand email me and I will explain. So many are just second nature to use and I don't realize that they dont make sense to anyone around me. Frank gets this puzzeled look on his face every now and again and I have to stop and explain myself before going on. He is getting used to it now after 4 years, but I do tend to pop in a new one every now and again.
Skilpad looks stunning. The wrap is awesome and I cannot thank Billy T & Tom for doing such an awesome job. I have written almost 100 names on the sides so far. Each time I write a name, I sent a thought/prayer/positive vibe to the person and their family. The caregivers are not forgotten at all! The names add such a wonderful personal touch to this adventure and we are proud to take everyone along with us. If there are any others that have CML or any blood cancer and want their name on there - please email me and we will add you! We will be adding names all along the way.
It is really so wonderful to be able to make a journey like this. Not only that we are going back to Alaska and can spend this amount of time away from home, but that we can do something that we feel will really make a difference. I really feel as if we might be able to help in the fight against CML and hopefully other cancers too by doing this fundraiser. It takes away so many of the helpless feelings, makes my 'freaking level' go down a tad and is simply an honor to take so many people with us! We are indeed very fortunate.
We will be leaving Soddy Daisy, Tennessee, on the morning of Tuesday 25th July. We hope to travel a total of 15 000 miles or more, be on the road for two months at least and raise as much money as we can for The Leukemia & Lymphoma Society. Pledges per mile would be wonderful - we will be taking the odometer reading of Skilpad and the bakkie before we leave.
Almost ready to go.........
Love to all
Annie and Frank
Friday, July 21, 2006
So I asked my questions and said that I was quite happy to leave the two of them alone to continue the appointment. Dr J turned to Steven with a quirky little smile on his face and asked him if he was totally happy with me there. Steven said yes and the look in the doctors eyes became pure, unadulterated mischief! He started firing very personal questions at Steven, not waiting for an answer while Steven frantically waved me out of the room! It was hilarious to see both their faces. Dr J was joking but it took Steven a while to recover.......... It was truely hilarious! Methinks I will leave the appointments up to Steven unless I have a very specific reason to go along. It was a lovely light moment - for me, anyway :-)
The blood results came back beautiful! I never thought numbers were beautiful - but these were. This doctor also says that he prefers not to do bone marrow biopsies which pleased Steven no end.
So. We can leave with the knowledge that Steven is still on the right track and that he is really easy and comfortable with Dr J. A great relief on both counts.
And on the fundraiser side of things: The RV now has over 100 names on its sides and is simply wonderful - we cannot get over it! Someone took one look, gasped and said "Oh My! Can you get it OFF?" We all laughed.
We went to the kickoff party downtown Chattanooga, taking the rv with us. Stacia from the LLS was very pleasantly surprised at what it looked like and a few more people from there gave us their names to ride with us.
The wheels have not yet turned and its already amazing. The emails are rolling in and I am learning so much from everyone that tells me their story. Some are heartbreaking and others so courageous - they are all filled with hope, encouragement and caring. I find myself a mere millimeter away from tears when writing the names on the rv and say a silent prayer for each one that goes on there. For each name there is at the very least, one caregiver - these people are also in my heart, mind and prayer.....they are fighting equally hard against this disease.
The shop is going nuts now that we are closing it down till we get back. Everyone has realised that they had better bring their sick computers now - and they sure are doing it! This is wonderful as we are able to get rid of most of our stock and are ensuring that there will be enough gas money to get us back home!
Three days and we leave. Our aim is to leave on Tuesday 25th between 9 and 10am. I sincerely hope it is not raining! I am not fond of starting a trip in the rain. We also need to start packing sometime soon, we keep delaying this. The piles in the house are growing but somehow the stuff is not finding its way outside. We knew where everything belonged in the other rv - the one that burned on Christmas Day...... and its going to be interesting to pack this one up.
Three days! wow. The excitement is building.
Tuesday, July 18, 2006
And we went to the college to sign him up for classes this fall. He is looking good and just has the general tiredness to deal with, but this has not stopped him from signing up for night classes. He has to work, of course, and will do these night classes for two years. Hats off to him!
And because his bloods are all looking good we can go on this fundraiser with easier hearts...... It would have almost been impossible if he was not headed in the right direction with this disease.
And the motorhome is wrapped! It looks absolutely AWESOME! We will be picking it up in about 2 hours and heading downtown for the kickoff party with the Leukemia & Lymphoma Society this evening. I promise to post pictures as soon as we get them - we were out until 10.30pm last night watching Tom from Billy T's Signs putting the wrap on, but then we left him to do what he was doing so very well and headed home for some sleep. Now the fine-tuning is happening and we will get her back in full regalia in a few hours! I simply cannot wait. I find myself almost tearful typing this. It's working. It's all working out. I SO hope that we can make a difference. This is such a personal drive. Every penny we raise will bring my son closer to a cure - and so many others too. It just HAS to make a difference.
This is becoming a reality and its scary. The tv people are calling wanting to know when we are leaving and we are wondering if we could sneak away quietly in the middle of the night. Just kidding! Neither Frank nor I are big on being in the limelight, but we know there are a good few bridges along the Alcan Highway that we can hide under for a day or so when we need a break.....and a very kind gentleman has offered us his driveway in Alaska if we need to 'hide" for a while up there. I don't think we will want to do too much of that as it would defeat the object, besides we are going to be towing the bakkie (pickup) and can always use this to get away from the "Big Colorful Bus", as one lady aptly named it :-)
A good few people have said that what we are doing is wonderful. I hear what they are saying, but doing this has been my medication for this disease in Steven. This has been my way of coping, of being able to stay sane and help towards a goal - cure! I know I have said before how helpless I felt in the face of this cancer and I really dont know how I could or would have coped if we did not have this fundraiser to focus on. At times the idea of my child having cancer still grabs me by the throat and rattles me around. I know it does to Steven too occasionally. I really really hope that it gets easier on him and Laura too.
It is quite a job packing up the shop and the house and suddenly everyone wants their computers fixed. We will close the computer shop on Saturday this week and pack and clean and sort over the weekend. We hope to leave on Tuesday 25th fairly early in the morning.
And Frank has gone to pick up Skilpad2! This is her official name. Skilpad means tortoise and the two is, well, because she is our 2nd one! I had to stay at the shop as the bench is full - well, someone had to do it and she is his baby so he gets the first drive.......
Gonna go now - more later!
Saturday, July 08, 2006
The good news? Steven is still doing really great! He has color and plenty smiles and looks better and better. The light tan from a sunburn helped too. :-) And now he has seen how easily he burns with gleevec and will be extra careful next time! They are really looking forward to the flight to Oregon and to get to meet with Dr Druker.
We are really so fortunate. So deeply fortunate................
There are a good many D-Days before we leave.
- First we drop off the motorhome with the signwriters on the 12th - next week! - so that the wrapping can happen.
- Early the next morning we leave to get my youngest daughter from Parris Island where she is graduating from Marines Boot Camp.
- Then we have a doctors appointment for Steven early the following week.
- On the 24th Joleen is scheduled to leave for another step on the Marines road and then.....................
- We will start our adventure either on the eve of the 25th or morning of the 26th July.
We are slowly packing up the house, the business and organising everything that goes along with closing up for over two months. Steven's flight plans to Oregon and Dr Druker will be finalised in mid August so we don't even have a definate date for his travel plans yet.
As soon as we are out on the road, I will be sending updates about where we are, what we are doing and hopefully some photographs too via email. The main site for the Alaska Fundraiser is www.RoadrunnersUSA.com and you will be able to link to the updates from there or go to www.roadrunnersusa.blogspot.com.
I do remember the days of pure terror at the beginning of Steven's diagnosis. It feels like at least three lifetimes away, yet is so clear as well. It is amazing to me how much we have settled into the new normal without even fully noticing its arrival. It is difficult sometimes to know whether to even bring up the subject of the leukemia with Steven or just leave it be, mostly we leave it be. I have to talk to him about it all again before we leave - you know- mother stuff, enough to make up for the months we will be gone - I can just see those eyes already! :-)
Every now and again, when everything is quiet, maybe more so when I am tired or Steven has looked tired or pale after a long day at work, the thought sneaks into my mind again. Steven has cancer. I find myself holding my breath, waiting for the wave of all those feelings to wash over me again. But mostly they don't anymore. And with a gentle 'hmmm', a semi crooked smile I can think and see only the positives. The 'what if's' have faded somewhat into the background and Frank has a really good outlook - don't worry about it until/if it happens. Plenty time to worry then!
I do look at my son more carefully than I used to do at the beginning of the year. My heart does squeeze when he is not 150%, even after a rough week at work - yes, my standards for him have gone up! I am allowed to be at 10%, but he HAS to be at least 120% - at all times! And every day I am eternally grateful for today and hope and pray that all three my "kids" have a very full and lovely life...
This cancer has taught us all so much.....
Wednesday, June 28, 2006
So I immediately went to my trusted support group - the Asia Yahoo group. I frantically typed out all the info and hit "send". I hit the reload button frantically every 15 seconds, desperately waiting for a confirmation of what I thought the results meant. The site was slow. Very slow. I sat with pounding heart, sweaty palms and did not even tell Frank about the results coming in - I needed to know for sure first. The tears hovered right inside those tear ducts, just waiting to flow. And then the responses came in. By all accounts it seemed like the results really were great. I cried. With relief. Then had to interrupt Frank and a customer to share the news - by then it was bubbling over and could not wait. So we celebrated. And then I called Steven at work.
His first response was "no more BMB's!" Bone marrow biopsies. Unfortunately he will have to resign himself to having these done. He is scheduled for one in early October and is dreading it. I am really hoping that we can get that delayed, especially now that we know his counts are all going in the right direction. Would this be the right thing to do? SO many questions - all the time! We will ask his local doc for his opinion. We also have the amazing opportunity of meeting with Dr Druker before that scheduled date as well. Fortunately at this stage, nothing is urgent at all and we really do have the time to think things through before going one way or the other.
That was Monday. Tuesday brought more confirmation that the results were good, and I really started relaxing. Thank you to all those that emailed us and responded on the boards. I printed your good wishes out and gave them to Steven who squirreled them home with him.
And then this morning I wake up to find that the website www.RoadrunnersUSA.com has gone live! I have been working on this site for a good few weeks now and was hoping that Jim from www.Lazylakewebdesign.com would send it live! He did -Thanks Jim......! So now you can go to that site for all the links and to get to the updates we will send from the road. And photographs. Please go and look and bookmark that site. Please visit the other links on that page too - especially www.penniesforcancer.com. :-)
And then I got an email from Penny wanting to know if a Canadian artist who is putting a cd single out of Penny's song, could use "The Penny" painting for the cover of the cd! What an honor! I just sat and let the tears flow. I think I was just generally emotional today, but that was such a good feeling.........
And then I got and email from Zavie! Steven has a number in the Zavie Zero Club! Number 987. I did not expect this at all..........what a wonderful surprise, and the tears flowed again. By this time, Frank just looked at me from the other side of the room and brought me more tissues - I was definately blubbering a lot today! But it was oh SO good........... and so many good reasons...........
And I called Debbie in Alaska to share the news with another person that is in exactly the same position as I am. Her daugher is # 982 and Steven #987 in the Zavie club. I knew she would know exactly how I feel! Thanks Debs. :-)
And the response to the website has been wonderful! So many great emails, caring people - we hope to meet many of them along the way.......
I know there was more good to today, but its late now and my brain has hit the serious overload stage! Got to catch up on some sleep now.
What a wonderful day. A really wonderful day.