Anyone who knows me has probably heard me talk about my views on having an AML recurrence. Generally speaking, I’ve felt that it wasn’t a question of if it was going to happen, but when. Like most people, I seek information on my disease and unfortunately never got the ‘good’ news I was looking for. The survival rates just plain suck. It’s because of those rates that I had a ‘when I relapse’ attitude. I didn’t, nor do I dwell on it, I just take it for what it is, a damaged vehicle. I know my body isn’t going to make it for the LONG haul. It’s this mindset that keeps me active, it keeps me ‘young’ if you will. I plan on beating the crap out of this body and getting ALL that I possibly can out of it. I want to do all that I possibly can; I want to experience and feel everything. I choose not to crawl up into my fear bubble.. of course, that’s easier to say now that I’m 4 years out…

I attend my local leukemia and lymphoma society support group and have for a few years. Support groups are interesting. It is indeed valuable to be able to regularly talk to people about cancer and not only have them not be sick of hearing it, but can relate to it. I treasure the ‘support’ I get but it’s bittersweet. The price I pay is watching some people very close to me and my situation pass away. There are some in active treatment, some who’ve been in remission for a long time (such as myself), some who get sick again, newly diagnosed and sadly, some who are very close to the end. Through the years that I’ve attended, I’ve always been the youngest and aside from one other (who has since passed) the only AML (or leukemia for that matter) survivor. Many times I have commented on wishing to meet an AML survivor who is 10 or more years out. One who was not diagnosed as a child nor one who is geriatric as both these scenarios are different than my own. We had a nurse this week and I posed the question to her “Do you know of many (or any) leukemia survivors who are 10+ years out?” (I get mixed reactions when I mention this) Her thought is that there are long term survivors out there but they have made it past the trauma of their treatment and don’t wish to look back. . She wracked her brain but could only think of one or two that fit the bill. She also works more in treatment than after care so she wouldn’t have exposure.. ok, excuse granted..

I took all this with me this morning to my 6 month check up. Yesterday I had my blood drawn and while I feel good and was sure all was fine, I still couldn’t help be a little worried. I still was anxious to see my numbers when the Dr came in the room. I’m fine. In fact I was going to ask to move to 1yr visits but we agreed to meet again in 6 months and then move to the yearly schedule. I also took advantage of my time with the Dr and asked some pressing questions that have been on my mind. I asked him if he had many leukemia survivors who are 10 or more years out and he, without hesitation, said oh yes. This excited me and I dared press on.. I asked, “a lot?”, He hesitated and said well, there aren’t many cases such as yours to begin with but yes, and he paused to think, there about 10 in his mind that he cares for over the years. He then said that typically he only gets 1-3 cases like mine a year and while there are a bunch that don’t make it, there are also some who do. He stressed again that if I’ve made it this far, it’s likely that nothing is going to happen. He even dared to say the word “cure” but he looked uncomfortable doing so. He’s said this last part to me before and I still don’t hold much stock in it as he also admitted in the same conversation that we still have no idea what actually causes leukemia but, I still took comfort from today’s visit.

I’m fine

Some First Descents news: I’m signed up this year to kayak in Idaho in August. A couple of my FD friends also said they were doing the Idaho camp so I’m excited for that. I’m also very excited to meet some new FD friends. This is such a worthwhile cause; it makes so much difference in a life, in many lives. It’s amazing. Nuff said for now.. more to come..

I can't believe it's finally here! Feels like I've been waiting forever for this.

It's FD Ball time!

You may remember last year I did a kayaking camp run by First Descents (founded by Brad Ludden, yum) and had the time of my life. There was buzz about this Fisrt Descents Ball held in Vail and from the moment I heard about it, I knew I was sooo there. Wouldn't you know it that times are a little tough right now and jetting off to Vail isn't the most responsible thing to do but.. I wanna (whine) so, I'm gunna. Scott and I are heading out to Vail this weekend for the 3rd Annual First Descents Ball (there's still time to get your tix!). It's a hat party and I look awful in hats but amazingly enough, I found the perfect one and can't wait to show it off. The dress on the other hand, not so lucky, still looking. Of course I'll let you know how it goes, check back next week!

It’s been a while, sorry. Now that cancer is not a major focus of my life, there’s less to blog about it. But today, it’s update time.

It’s been almost 4 years since my dx. Seems like just yesterday. Sometimes the shock and disbelief still creep up on me. Just when I’m feeling comfortable and ready to take the next step forward, the fear of that moment, the moment when my world stops, the moment I hear “you’ve got leukemia”, creeps up on me and takes me back. Only for a minute, till I can rationalize with my fear and convince it that it’s ok to relax and not worry. I must admit, I’m not sure my brain 100% believes it but it does a good job convincing who/whatever needs convincing. I’m fine and will be forever. I will live a long happy life without having to battle cancer again. I will die a peaceful natural way without the help of the evil that cancer is.. a long long time from now. I can say the words and I can almost believe them, I can. But it’s a battle when everywhere I look, it’s there. Cancer is everywhere. It’s suffocating and so damn frightening. I put it up on the shelf and try not to think about it so much. Watching my Aunt die, watching the cancer take her, was by far, hands down the hardest thing I’ve ever had to do. Then to see my Gram die the same death.. Burying my neighbor from the same fate.. hearing of death from my support group.. It can all be very overwhelming. The conflict I have for being a survivor. It’s a smigid odd to admit but I’ve felt guilty in the presence of grieving family because I was fortunate enough to survive my battle. Silly, I know, but it’s there.

So, yea, I’m healthy. My last oncology appointment was in December and my counts were normal. I go to the doctor every 6 months now and get a CBC whenever I feel I might need one. I’ve been doing really well not freaking out at every bout of fatigue or bruise. There are times in my cycle that I have more moments of concern but ive gotten to the point where I recognize it and am able to wait it out before I freak out. Time, I guess, can be a wonderful thing. The more time I’m given, the easier it is to deal.

My girls are doing well too. I’m not sure of exactly how well they are dealing or dealt with my cancer. They don’t like to talk about it.. Well, they don’t like to talk about it to ME. Honestly I think puberty is a bigger issue right now. There isn’t quite a light at the end of the tunnel yet as they are 10 & 13 but I know it’s there ;-)

So that’s it, that’s my update. Hope all is well with you and yours. Till next time..

Dear AML and all your little friends.

Well well well, that was certainly smooth! I didn’t even see you coming. Up out of nowhere you eased into my life without even a peep. Sure, news of your presence was a shock for my family and myself but we didn’t dwell on it. Once we learned you were there, we took action and blasted you with the biggest bomb we could find. Didn’t feel too good, did it. Doesn’t feel good being snuck up on and attacked, does it. Too bad for you! We blasted you out and you waved the white flag immediately. Did you think we’d fall for that? Fat chance. We blasted you some more & a little more than that. Seeing the white flag wasn’t good enough. Sorry, you needed to die.

If I didn’t make it clear, I’m not crazy about being snuck up on. Unfortunately you’ve got me looking over my shoulder almost every day. You won’t sneak up on me again, I’m prepared this time. In a perfect world, I’d believe that your dead but I can’t help the nagging feeling you’re lurking somewhere. That’s ok, it’s all good. I’ve got bigger and badder weapons all lined up for when you think you’re ready to strike. Give it your best shot! I’ll take you down again, I’m not afraid.

No, I’m not afraid of you or your friends. You think you’re all big and tough with your crazy multiplying tricks and fancy vital organ locating devices. Silly cancer, don’t you know we’ve got what we need to take you out? Sure you win some of the battles but the war isn’t over and we’ve got your number. We’re learning more and more about your tactics every day. Soon you’ll surprise none and where will you be then? Give it up, you can’t win, we’re stronger and smarter.

You might as well give up now but I know you won’t. I suppose you can consider this your warning. We’re ready to fight, you won’t win.

Your worst nightmare,
Chrissy

A couple of months ago my family was hit with the news that my Aunty Carol had lung cancer. We learned slowly that not only was it stage 4 but it had metastasized to her brain. The brain tumors needed to be radiated before chemo for the lung tumors could start. By the time it was time for chemo, she just wasn’t strong enough. That was about three weeks ago. Since then she slowly (well it seemed slowly but really it was so fast) declined. A week ago Monday, the decision to start hospice care was made and that Friday she was home. Over the past week I've watched the life slowly leave from her. If I hadn't seen it with my own eyes, I don't think I could have comprehended just how bad it was. Lung cancer is a terrible way to go. Being a cancer survivor it might be hard for you to believe but I never really understood just how evil cancer is. Tonight, at 7:30, my Aunt Carol passed away peacefully at home. She was surrounded by her family at all times at the end and there is never a shortage of love for her. I love her deeply and have some of the fondest memories of her. I so wish she wasn’t gone but at the same time, she was so sick her passing almost seemed like a blessing. Honestly, I haven’t really absorbed the news yet. I can’t believe she’s really gone.

Today, as I stopped for a drink and reading material on my way to her house I wanted so bad to be able to buy something to give her, something to bring her joy. I sat in my car and had the obvious realization that there is NOTHING I could get her. She couldn’t move, talk or as of today, open her eyes. I realized all I could bring her is my love as I have been doing as much as I could every day. I know my love and support has helped and I know I’ll continue to bring it. This realization kinda hit home for me. All you really need is love. That’s the only thing you take with you when you die. Wow.