“I’m going to run your CEA again to check on it, it’s risen quite a bit.”
“How much did it jump?” I ask my oncologist.
“It’s 70” (up from 19 at the beginning of the summer) Don’t get hung up on a number he tells me, but I know better and I can feel the tears welling up in my eyes. Increases in my CEA have always corresponded with growth of my cancer.
I frequently hear from friends “I don’t know how you do it?” To which I think to myself, “I don’t either”. It would certainly be nice if there were a handbook for cancer patients telling us how to manage the myriad of emotional challenges we go through. I don’t see the challenges any different based on your staging of 1, 2, 3 or 4; but rather they are amplified as your number gets higher. Not to minimize those dealing with stages 1, 2 or 3; the feelings of fear and anxiety are every bit as real and overwhelming as they are for those of us with stage 4. It’s just that when you hit stage 4 (and there is no stage 5 to progress to or through), you’re pushed further yet.
When I was first diagnosed my doctors thought I was a stage 1; possibly stage 2. My surgeon always suspected stage 3; but she couldn’t find a diagnostic test to confirm her suspicions; which turned out to be right. After surgery I was deemed cancer free and almost made it 3 years before the spots on my lungs were confirmed to be a recurrence of my original rectal cancer. When I heard the words “recurrence”, “chemo for life” and the dreaded “3 years left” my knees buckled and I fell to the floor. I had to have a nurse call a friend to give me a ride home. And then – silence.
“Tell me where you want to go” my friend said as we drove to the drug store to refill my Lorazepam script. “We’ll go wherever you want – we’ll get a room at the resort and go get massages, we’ll go to the bar – anything – where to?” But again, silence. I just wanted to go home. Caring friends all willing to talk surrounded me – but I was at a complete loss for words. I just wanted to stare at the walls and pretend none of this was happening.
I’ve almost come to the end of “3 years left” and I’m still here. While not cured, and with my cancer slowly progressing, I’m cautiously optimistic that I still have a year or two left. And while I’m woefully unskilled to write an instruction manual on how to live with stage 4 cancer, I’ll try to offer some help and advice for those who have the misfortune of following in my footsteps.
When I first joined The Colon Club there were a handful of members I looked up to. Bradyr, Justsing and of course Gaelen. There was Jessica, the young mother who fought so valiantly to live for her newborn daughter. There was Starbuck who just wanted to be a twenty something woman experiencing all life has to offer. Bill Llib – father, husband, Boy Scout troop leader, friend. All fought, all died. But it was their courage and determination that gave me strength – and still does. If they can do this, then so can I; even if “this” meant dying. We all need heroes. None of these beautiful people considered themselves heroes or ever wanted to be heroes. But I needed heroes to light the way for me and this is the role they played.
For those with stage 1, 2 or 3 you have hope – hope that the disease is gone from your body forever; hope that someday your life will return to what it was pre-cancer. Knowing that life will never be the same, but hope that it can still be good. I have hope too, but hope takes on a different meaning when you’re stage 4, on chemo for life and running out of options.
I hope that in the end my pain will be managed and when I do become incapacitated that it won’t last for long. I hope I’m not confined to a hospital bed for an extended period of time – that my passing is quick. I hope that my children and husband don’t suffer needlessly and endlessly. I hope that people remember me as a person and not a person who had cancer. I hope and I pray for strength. And somewhere in a deep dark pocket of my mind, I hope for a cure. It’s crazy, I know – but even those of us looking at grim futures still have a glimmer of hope that a miracle will take place. And really, is that any crazier than people who religiously purchase lottery tickets every week – convinced that one day their number will come up? Hope takes on many varied forms.
While living with stage 4 isn’t where any of us want to be or choose to be – life can still be enjoyed – tremendously – in between chemo treatments and side effects. And while we often feel we are the only people in the world suffering, there is tremendous pain in this world caused by things other than cancer. Hunger, abuse, disease, poverty, oppression – the list goes on. Sometimes we all need a reality check and to acknowledge that many people suffer – daily – to a greater extent than we do. When my surgeon first told me that my pathology report showed cancer in 27 of the 38 lymph nodes she had removed, I completely fell apart and asked her “how could this be any worse?” – to which she softly replied, “there is always someone worse off than you are”.
And so it goes. Chemo weekly. Scans quarterly; more frequent when trying a new chemo to see if it might work. Managing the myriad of side effects and assaults my body takes from the treatment designed to extend my life. Still, in between it all, there are many opportunities to live life. Granted I don’t live life the way I would have had cancer never entered my world. I’ve been detoured down roads I never would have otherwise traveled. Some of the roads take me to scary places, like the dark forest in The Wizard of Oz with mysterious creatures lurking in the shadows ready to attack. Some of the places have flying monkey’s trying to pull me apart and frightening voices screeching in my head. But other roads take me to wondrous places – like The Emerald City or the beautiful poppy fields. Last year one of the roads even took me to Kansas City!
Whatever road you find yourself on, always look ahead. Identify heroes to help guide you, walk with you and show you the way. While hope may take on different forms, always have hope. Live life to the fullest extent possible. Surround yourself with people who support you, love you and inspire you. Life is short and for some of us it will be shorter than others. Coming to terms with that doesn’t happen over night, but in time, we adjust to our new reality. It’s not what we wanted, it’s not what we chose, but it’s the cards we’ve been dealt. Sometimes we just have to put on our poker face and make the best of a lousy hand. It doesn’t mean the game is over, it just means it’s a little more challenging.
When my kids were little and it was time for a play date to come to an end, I always gave them the “5 minutes” heads up to let them know it was almost time to go. They acknowledged the 5-minute warning but when 5 minutes was up and it was time to go, my son would usually have a melt down. He didn’t want to leave the party – he wanted to stay and have fun. At times I have the guilty feeling of behaving like a two year old myself. I know that soon it will be my turn to leave the party and go home. It will be time to go – plain and simple. I’ll kick and scream and fight and throw a tantrum and do all I can to stay just a little longer. But even two year olds tire of this routine and eventually succumb to their destiny, pack up their toys and go home.
When I was in my 20’s I was an avid hiker, backpacker and long distance cyclist. I taught aerobics for a couple of years and I went through a period where I was obsessed with West Coast Swing and Country Western Dancing. It was always something. Friends who were less active marveled at how I could decide on a moments notice that it was a good time to join a group of friends and backpack through The Grand Canyon. What they didn’t realize was that I didn’t achieve that fitness level over night – it took many months of training and ongoing work to maintain that fitness level. The benefits were great, but it took commitment and hard work.
I like to think of stage 4 survivors in the same light. I didn’t reach this level of acceptance or coping overnight. I could behave like a two year old and have a complete melt down every time I get bad test results; but really, that just takes too much energy, which I don’t have. So I cry a bit, spend some time alone soaking it all up and processing it and then I do my best to move on. Some days are harder than others. It’s like hiking through the Grand Canyon. You find yourself halfway down the trail, tired, hot, sweaty and running low on water. You can sit there and cry and hope a donkey passes your way without a rider – or you can pick yourself up, dust yourself off and begin putting one foot in front of the other towards the river – where you can take off your shoes, rinse the dust off your face and replenish your water supply. Since donkeys don’t travel on most of the trails we hiked, I just kept putting one foot in front of the other until I reached my journeys end. I hope I can find the strength now that I found back then – on the trails and on the remote bike rides. And I hope that when I reach my final destination I find the relief, the peace and the comfort that each of my former travels blessed me with.