I know I haven’t written in too long. People tend to think that when you’re off work on a medical leave you have freed up eight hours a day that you’d ordinarily be at work. Truth is, when you have cancer you spend an awful lot of time in doctor’s offices, at pharmacies, at radiology clinics, and at blood labs. I make an effort to try to arrange my appointments back to back so that I have at least two weekdays to do other things I need to do, but that usually doesn’t work out. So my life has totally become about cancer once again. Everyday. I have cancer. Metastatic cancer at that. I try not to let cancer have me, but it tends to.
And yet, there is this vaguely familiar denial. I struggled with this the first time around- I would vacillate between fear and grief to completely forgetting I even had cancer. There was not a whole lot in between. And I’m feeling the ebb and flow this second time around too. Like when I’m cleaning my house, or driving somewhere, or watching television, I forget. I’m tired and have various physical complaints, but in those distracted moments I feel emotionally the same as I did before the reoccurrence. I still walk by the rose bushes and forget to smell them, in a rush to get to my next doctor’s appointment. Life as usual. But when I look in the mirror and see my hairless head and fading skin tone, when I sit to endure the numerous needle pokes to collect just a tube of blood and look at my always-bruised arm, I know I have a deadly disease. It’s like waking up from a nap when you have to be somewhere- you panic as you look for the clock to see what time it is and wonder, “how long have I been sleeping”? I rub my bald head as I look in the mirror and ask myself, “how long have I been sleeping? Am I in denial”? The first time around these experiences really disturbed me- this searing consciousness that I may be dying and yet I am somehow not participating in that process as fully as maybe I should. But something is different this second time. I am more at ease. I am more complacent, more resigned. I take naps now too, and am working on not worrying so much about the clock on those days. And it’s really ok if this path leads me to an end- for now.
I was talking to a very talented tattoo artist recently. We were talking about how long people can sit and endure the tattoo needle. And he shared an observation that he has made: the third and fourth hours tend to be a real struggle for people to sit through, but once they reach the fifth and sixth hours something happens and they can deal with the pain better. If you can sit under a tattoo machine for four hours then you can probably sit under it for eight. I’ve never gone more than three hours on my own tattooing, but that’s been more a function of my artist, and not so much my unwillingness. (By the way- because I am back in chemotherapy I had to stop the work on my tattoo, which was about 80% finished). So I don’t know what it’s really like to reach that peak intensity and overcome it. At least not in the sense of tattooing. But that phenomena, or natural rhythm, is very familiar to me. And during the times I did sit under a tattoo needle, when the pain was almost overwhelming, I often thought about those who had gone before me in showing the strength and power in the will to win or to survive. Athletes often talk about “pushing past” the mental and emotional barrier that makes them want to quit. And I have certainly had to do that many times going through cancer treatment, whether that be talking myself through the claustrophobia induced by being in an MRI machine, allowing myself to be stuck with needles over and over in search of some blood, or getting myself to the cancer center knowing I was going to be infused with something that would make me sick as a dog. But I haven’t really made it to the fifth or sixth hour yet. There has to be a transition period- a period where the battle is both fought and either won or lost. I don’t know how long that transition period is, or is supposed to be. But I do know that the longer one is in battle, the wearier they do become. When we’re talking about tattooing we are talking about hours. A battle can be fought and won in even less than an hour. But when we’re talking about cancer treatment, we could be talking months, maybe even years. And what exactly does victory look like? In terms of tattooing, I suppose it would be meeting the goal of enduring the total amount of tattooing time that you had scheduled. In terms of running a marathon, it would obviously be crossing the defined finish line. But what about cancer treatment? I am not convinced that victory is defined as cure. There is a difference between healing and cure- a bit of wisdom that didn’t come to me easily. And although cure is something I entertained for several months in between treatments, I don’t think I’ve achieved either. Well, I know I haven’t. So while my oncologist is working on the cure part of the equation, I’m thinking about the healing part. That’s where the real victory can be found. I thought that perhaps, because my emotional unpredictability and intensity has decreased so much since the first go-round with cancer, I might be closer to healing than I obviously am to being cured. I was feeling so resigned, so ready to just quit fighting it and to keep a steady focus and pace towards the finish line.
But sometimes you overcome one battle, and another beckons more of your mental energy- like the marathon runner who pushes past the pain and physical exhaustion of the uphill segment of the race to only find that he’s overcome by a leg cramp after finding his focus and pace. And so, maybe I did find some semblance of a steady pace, only to be overcome by a leg cramp? I spent Thanksgiving this year in the hospital. It’s a rather long story as to how I got there, but basically an emergency room visit the eve of Thanksgiving resulted in me being admitted, in spite of my tearful begging and pleading with the admitting doctor to let me go spend Thanksgiving dinner with my family. I even promised to come back to the hospital afterwards. While they couldn’t really keep me, a sound-minded, strong-willed, and able-bodied woman, they did want me to sign an “Against Medical Advice” release if I did so decide to walk out of the hospital. And I was ready to do it. I don’t know if I’ll be around to enjoy Thanksgiving dinner with my family in 2007. And even if I am, Justin’s still making plans to join the Marine Corp, which would put him in Florida in November 2007. So this may well be our last Thanksgiving with the five of us for some time to come. I sure did not want to lose that to this stupid cancer. But when Al said that he would worry about me if I signed myself out, I reluctantly decided that it wouldn’t be that great of a Thanksgiving dinner anyway- not if I was as sick as they said I was and Al was distracted with worry. So I cried some more. Sitting there on a gurney in the hallway of the emergency room, sleep deprived, with my head obviously balded by chemotherapy, and in my blood-stained (too many bad needle sticks) Tinkerbell pajamas, I cried and cried. “Ok, doctor”, I painfully submitted, “I’ll let you admit me to the hospital”. He was relieved. After about an hour of hassling the guy, I imagine he was starting to think he’d have better luck selling cars. And I was starting to feel like I was in a game of “mercy” with God. Remember when you were a kid and your so-called friend would twist your hand or arm backwards until you said, “mercy”? The objective was to tolerate as much pain as you could until you surrendered, and then relief would come- like tapping out in wrestling. I know God doesn’t play games. But in my childishness I found myself crying out for mercy. Damn it! Damn it! Damn it! How much more do I have to give up here? Even my very life? I still struggle with profound grief and loss at times.
So I spent two days there and came back home, bruised beyond imagination. I was admitted for septicemia- I went to the ER thinking I had a blood clot in my port catheter again, but they suspected it was an infection in the catheter that had gotten into my bloodstream (my white blood cell count was really high). I got dosed with the big, bad boy intravenous antibiotics, and when things looked better, they set me free. The blood cultures came back negative, so I wasn’t septic. (I never believed that I was). But I did have a localized infection around my port. I just finished my seven days of prescription antibiotics yesterday. The Tuesday following my hospital release, November 28th, I was scheduled for my third cycle of chemotherapy. But with the port area still being infected, their inability to draw any blood from me (all my good veins were tapped when I was in the hospital), and my newly developed heart arrhythmia, we mutually decided that I was going to skip treatment this week. Besides, the MD Anderson plan was to have two treatments and then scans- the scans should show if the chemo is working, or not. And if it isn’t, we were to change to other protocols quickly. Speaking of MD Anderson, the total bill was over $20,000 (not including traveling expenses). I was scheduled to return for a follow-up there on November 28th, but there’s no way I can continue being seen there with that cost. I don’t regret having gone- it was imperative to my health on all levels. But we were left, after my parents gave us a good chunk for me to be seen there, with an extravagant bill. God has worked through people to meet that financial need in the most unexpected and amazing ways, and I am grateful for that. But it’s that kind of gratitude that is so overwhelming that I almost feel guilty about receiving the blessing- like I don’t deserve it, shouldn’t have it, or my need is not great enough. How odd it is that I am crying out for mercy while God is blessing me with His grace. But that sure isn’t inconsistent with the character of God, and if anything, only reaffirms for me that He is in total control.
So my oncology team conceded to do scans before the next treatment. There was no point in poisoning my body with chemotherapy drugs that aren’t beating the cancer back, and time is not on my side with this. (If I had the chemo and then the scan showed it wasn’t working, I’d have to wait another 3 weeks before I could have a different type of chemo). So it just made sense to have the scans before the chemo so we would know if we needed to continue on the path we were on, or change paths. I went for scans this week and re-scheduled chemo for next Tuesday, December 5th. That extra week of recovery was really needed too. It allowed me to get a lot of the Christmas shopping for the kids done. We’re also trying to get our living room re-modeled (painted and stuff). And, it’s already time for me to send out Christmas cards. Unfortunately, for the most part I spend that first week of chemo in bed. It’s been really rough this time around and I wear out really easily. So I have been cramming in as much busy-work this week as I can, because I know next week I will be out of commission. If I had chemo this week I don’t think I would have been up to going to Justin’s championship football game, either. His high school team won it’s way to the regional, division three championships for the first time in a long time, and it being Justin’s senior year, it was an exciting time in his life. I am so glad that I was there for that. Justin didn’t get to play because he just got his cast off on Wednesday and his metacarpal (hand bone) is not entirely healed. But his teammates and close friends were there to play, and it meant a lot for me to be there. We have been so blessed to provide them the stability so that they have grown up with the same friends they’ve had for years, and some of those friends have become like family.
Anyway, I won’t get the results of my scans until next week, and I will proceed with chemotherapy on the basis of what progress has or hasn’t been made with the two treatments I have had. After Tuesday I won’t have treatment again until after Christmas, so that’s another welcomed relief. Giving up Thanksgiving was hard enough. I would like to be healthy, or at least to feel decent this Christmas. If I am not able to write again until after Christmas, I want to say that I hope that you’re blessed with the love expressed during the gathering of family and friends during the holiday season.
Always in His Grace-