Here I Am (in the chemo chair)

Greetings from the chemo chair! It strikes me as unusual that with all the hours I’ve spent in chemotherapy recliners I’ve never actually done any writing while in them. For me writing conjures up deep emotions, and I suppose getting myself into the chemo chair is difficult enough. But, according to Dr. Patel, who is in agreement with Dr. Cristofanilli, I’ll be getting chemotherapy for the “rest of my life”, however long that is. So, I guess I better get used to doing a lot of things in the chemo chair. With it consuming a vital spot in my weekly life I’m thinking I may need to develop an activity to both pass the time and nurture my soul along with treating my body. But good God! If I live another 40 years they’ll surely have a cure for cancer by then. I keep telling myself that anyway. The prospect of having weekly chemotherapy treatments for the rest of my life is enough to make me wonder what the point (or purpose) of my life really is. I mean, I know what my purpose is in the broadest sense, but it’s the working out of that I am totally unsure of. There, that little spot on Earth I possess, is where all the dirty work of being human is done. And this past month I’ve gotten really, really dirty. As I sit here the clock continues to tick on. It reminds me that September is fast approaching. September will mark one year since my surgery, one year that I’ve been off work. And time has pressed me to make a decision. I have to either return to work or officially sever my relationship with the organization I have counted myself a part of for the past few years. It might be surprising to some that that has been an agonizing decision. I have struggled, and wrestled, and fought, crying it out along the way. I’ve had to dig deep and unearth all that I am, that I have become. And like Achilles, I’ve once again come to the weakest spot.

But I can find comfort in the assurance that God is at the helm. We’ve started attending church services again after a long absence, and through sermons the past couple of weeks God has spoken to me about submitting myself unto Him. I am so damned strong-willed! So, even after years of Christian “service” I still struggle with fully submitting myself, especially in areas of service. God has taken so much from me. Through that He’s made it painfully clear how much of myself I have affixed to the various “ministries” I’ve woven into my life. It’s been so much that the prospect of not returning to work has left me feeling completely lost. Who am I if I am not “Aimee Shaw, Service Coordinator”? And how do I go from saying, “I’m on medical leave, but work for…..” to saying, “I don’t work” without feeling the significant loss contained within those words? And even more pointed, who am I if I have no title to identify myself by? These questions have led to some painful answers, both by revealing my own shortcomings and also by identifying another felt loss in my life. All of this soul-searching has provided me an answer: I will not be retuning to work for a while. I am nowhere near where I wanted to be for a 34 year old woman with a Master’s degree (unemployed), and without a clear forward path to mark my accomplishments by, I feel completely lost. But I am where God destined me to be. So I keep telling myself, everyday, that my worth is not determined by my ability to maintain a full-time paid position.

But, it’s even more than that. It’s retirement and pay raises, it’s health insurance and promotions. It’s all those things that we hope to invest into our future. The idea that I am 34 years old with no substantial retirement is scary. At best I have two more years with disability income and then I will have to return to work- but with 2 years of retirement contributions and a lot of seniority and vacation time lost. And then cancer has reminded me that each day I have is graced to me by God. We are not promised tomorrow. It’s a good thing that I haven’t given up to cancer, but the truth is, I may not even live to see retirement age. Only God knows the number of my days. And His Word reminds me to not store up treasures for myself on Earth (Matthew 6:19+)- lessons that have not come easily. So, now that the decision has been made to not return to work, I am trying to take some deep breaths and relax in the peace that comes after the struggle to let go. Every day I have to remind myself that this is about faith.

But today (8/21/07) I am also pressed by time in a more immediate matter. Actually, I had to stop writing because I was done with chemo and then became consumed with other things. So I came back to write more on Wednesday, August 22nd. And then I found myself no longer pressed for time- time had run out. Yesterday (this writing endeavor spanned several days, so I mean on 8/22/07) Justin left for basic training for the U.S. Army. He ended up signing for the Army with a six year military police contract. The Army trains all their MPs together at one base. So, because they had to fill the upcoming class, they offered Justin a very generous sign-on bonus for starting with the next cohort of soldiers. None of us were ready for Justin to go so soon, but they told him (whether truthfully, or not) that if he had waited for the next cohort (21 weeks) not only would he not get the sign-on bonus, he may not even be able to get the MP contract. So, that left us with 20 days to ruminate over Justin’s impending flight from the nest. Yes, time pressed on and now has run out. Justin left yesterday (8/22/07) for the Los Angeles MEP station and will fly out of LAX on Friday (8/24/07), heading to St. Louis. He will spend 9 weeks in basic training (boot camp) and then 12 weeks in his AIT MP training, in an impacted program. He will spend all 21+ weeks at Fort Leonard Wood, Missouri and is supposed to graduate in late January. He will be able to come home for Christmas, but other than then, we won’t see him. This will be our first Thanksgiving without him. Of course I have mixed emotions about seeing my son off to the Army. As with his high school graduation, it is a bittersweet moment in time. I am so, so sad to have to so radically let go of my firstborn. Where did 18 years go? And yet I am so, so grateful to be alive today to see him off with the tenderness that only a Mom can express. I can write him, send him ‘care packages’, keep him at the forefront of my mind. I know he needs that support, and I thank God for allowing me to provide that to him.

Lately, I’ve thought a lot about that too. Parenting. Being a Mom. Because I won’t be returning to work anytime soon I’ve had to deeply consider what being “just a Mom” really means. I had always wished I could just be a full-time Mom. Work consumes so much time and energy that parenting can easily become a default endeavor. I mean, over the years I have parented because I was forced to. We all lived in the same house and issues came up that required direct parental intervention (beyond the normal “providing” for the kids). But it’s really hard to parent with purpose when you have to squeeze that in evening and weekends. Really, when we work full-time we can hardly be anything more than part-time parents. At least that’s how it has been for me. And I always longed to be able to practice more purposeful (rather than reactionary) parenting. But because of necessity I started really working in graduate school, and going through a divorce, being a single Mother with no support from their Father, I had to throw myself into employment just to keep our heads above water. My kids have been a significant motivating force throughout my life. Being only 16 years old when I birthed Justin, and living the lifestyle I did, I could have easily made a series of bad decisions that would have directly effected their destinies, as well as mine. I was 22 years old with 3 children and a drug addicted husband. What choice did I really have but to put my nose to the grindstone? I mean, I had choices, but not really. My heart knew what the right thing to do was. And I did it. I earned a graduate degree not because I wanted some fancy title, but because I wanted to be able to provide decently for my children as a single mother. Had I not done that who knows what type of impoverished hopelessness I might be living in. And who knows what direction my growing children would have gone. I know my hard work, the stability I have been able to provide them, has been motivated by my desire to see them have a better life than I have had. But over the years, while that was the original driving force behind all my achievements, all that motivation has washed out. I mean, in the past several years we’ve been really blessed. Al and I have been married for over 8 years now. He’s had employment stability for several years and is making twice what he made when we met. And all our basic needs were being met. So the past several years while I continued to work for the same reasons, stability in our own lives caused my focus to shift. And then the motivation was to provide more and more materially for my children- all stuff that they didn’t truly need. Somewhere in that transition from being a welfare Mom to a degreed professional I affixed myself to the professional world. And the end result is painfully apparent to me just now, as my firstborn son is leaving the nest. Don’t get me wrong- I’m not feeling guilty, as if I neglected my children. We were at almost every football game. I was there when Justin ran that historic 86 yard interception during the football season in his junior year. And I had tears in my eyes as everyone jumped to their feet to cheer him on in that single magical moment. And that time, not so long ago, that I was with him all night in the emergency room with his staph infection. I was there. But was I? I’ve always felt I had to fit the kids into my free time. And like most Moms, I’ve grossly neglected myself in that lifestyle. No one has time to work full-time, be a wife, adequately parent 3 kids, maintain a household, and take care of themselves. Cancer has forced me to take care of myself. But even then it’s been necessity, with my children being the singular motivation for me to go through the hellish nightmare of cancer treatment.

It’s both ironic and uncanny how cancer has changed things, prioritized things. Not only has it forced me to focus more on myself, on taking care of myself, on making time for me (even if I’m not really doing what I’d like to be doing, and doctor’s appointments have had to take priority over everything else), it’s also put a sharper focus on what’s really important- my family. Those same kids who were my motivation to work are the ones who began to feed a counter-motivation to stay home to be a full-time Mom. But, while I struggled within myself with those two opposing callings, I always made the decision to continue working full-time. In part that was the nature of my line of work- it’s really difficult to be a social worker part-time. It was also influenced by poor financial planning, which always left us living paycheck to paycheck. And, the thing I have most been struggling with lately, it is really difficult to walk away from the identity that 10 years as a working professional provided me. While in my heart I longed to be a Mom first, in reality I was a social worker first. For years I also struggled with feeling like the job I received a paycheck from was not truly a ministry- that somehow the paycheck clouded the motivation and made it impure. I spent so many years dissatisfied with work in general because of that- always wanting to pursue (what I perceived were) more noble callings outside of paid employment, yet never having enough time to do it. Talk about frustration. Again in an ironic twist, or an increment of growth, it was the last time period after returning to work from another cancer-related leave in which that struggle broke through. I had finally settled into a caseload that I felt fit me, that I felt I had the most positive impact, where I felt true ministry was working through me. I had finally, after years of struggling, came to peace with my job and reconciled it as a valid ministry. That frustration was dissipating and I was liking my job for the first time in years. I looked forward to going to work. And then my cancer came back (or, grew to a point of being detectable again). I had no choice but to quit working because the surgery was major and the chemotherapy aggressive. And now here I am, settled into a routine with weekly Herceptin infusions, supposedly for the rest of my life, but with no evidence of cancer. It’s been a year and my medical leave had already been extended for six months beyond the usual six month allotment. I have to make a choice. That choice has been financially scary. And it’s been emotionally difficult. No longer being a social worker and being “just a Mom” is a daunting prospect, even though it’s what my heart has desired. Therein is the irony- that my longings have been fulfilled by cancer. Cancer has forced me to slow down, to quit working, to re-define myself. Throughout the years I have heard many Christian people warn, “be careful what you ask for in prayer- you might get it”. While I won’t comment on the theology of that irony, I can see how that does speak to my situation only in as much as cancer has changed me and those around me in many ways. I’m certain that God didn’t strike me with cancer because I had a longing in my heart to be a full-time Mom and He knew that would be the only way to give me that (or force it upon me). But, I can share that I believe cancer has had a significant effect on me and has changed me. And all those changes are by the Hand of God. Even sharing about my struggles with others has a purpose by Him. So I have gone from having ‘my’ ministry to having His ministry. I can only shake my head at the realization of that- how I have talked myself into believing I was carrying out a God-given ministry all the while I was fighting submitting wholly to Him to allow Him to work ministry through me. So here I am, in this chemo chair. I’ve been stripped of everything. Well, maybe not everything, but a hell of a lot. This past month has been a time of loss for me- loss of a child to adulthood, loss of the hope of ever being free from cancer treatment, loss of a professional identity, of a sense of who I am. And that’s all I can say with any positive affect, “here I am, God”.

I recently bought a book, “Becoming Real: Christ’s Call to Authentic Living” by Steven James. I haven’t read through it yet, but skimming through it to see if it was a worthwhile buy I noted that Mr. James makes metaphorical reference to living in faith as “letting go of the boat”. Again, for anyone who’s been reading all these ridiculously long journaling efforts of mine, this drips with irony. I really need to get back to work on my tattoo- the ocean side of the ribbon is calling for some completion. I really am being challenged on so many levels to let go of the boat here. One of the chapters in Mr. James’ book is entitled, “Welcome Signs: Reprioritizing Family Relationships”. Of course that caught my eye immediately. It speaks directly to where I am, and with perfect timing. So I did take the time to read this one chapter. And in it the author writes, “we are called to welcome children into our hearts, into this world, into our churches, and into our homes. They are so precious to God that in a mysterious way, when we welcome children in his name, we’re actually welcoming him: ‘Anyone who welcomes a little child like this on my behalf welcomes me, and anyone who welcomes me welcomes not only me but also my Father who sent me’ (Mark 9:37)”. In considering what to do with my assets I have seriously considered foster parenting. Even before we moved into the new house I felt a tug on my heart that with all that extra space, and an extra bedroom, we needed to use that to help someone who needs it. We began talking about foster parenting before I was even certain about whether I would return to work or not. But I knew I could not do both- work full-time and foster parent. So now that I’ve made the decision to not return to work when my leave expires, Al and I have agreed that foster parenting is a worthwhile endeavor, and have begun going through the demanding process of becoming certified foster parents. I won’t cover the truth by failing to share that there is a financial incentive for foster parenting. And it is enough to ease some of my fears about the financial repercussions of not returning to work. But it’s not like it completely replaces a professional position. With foster parenting there are no yearly salary raises, there is no health insurance, no paid vacation time accrual, no retirement plan. Whatever monetary compensation is given is intended to be available for the material support of the child. But I don’t want to pretend that the financial aspects of foster parenting weren’t a part of our decision making process, because they were. But parenting is hard. Parenting children who have been victims of negative parenting is even harder. In many ways returning to work would be the easier thing for me to do. And considering the sacrifice we would make in comparison to the menial financial compensation is enough to make me doubt whether foster parenting is a wise choice. But we’ve spoken to Amanda and Jared about it at length and they are both excited to have foster children join our family circle, enter our home space. Their welfare has to be my priority as they are my children first. And so, we will place boundaries around what ages of children we will take and will be discerning about their emotional issues as well. We’re going through the certification process with a Christian agency, and I am feeling even more inspired by the ministry opportunity this presents the closer we get to being ready to accept children into our home. I am really beginning to own the ministry of parenting.

So, here I am. Just a Mom. And still a cancer survivor. There’s nothing new that I haven’t already shared on that front. Weekly Herceptin infusions for the rest of my life. My Circulating Tumor Cell count is still at a “0”. My scans in early July were clear. I’m still doing weekly occupational therapy for fibromyalgia symptoms (supposedly caused from chemotherapy). My neuropathy is taming, but still a constant presence in my hands. I’ve cut down my Neurontin intake, as I believe that was what was causing me the foggy feeling in my thinking ability. I still have lymphadema in my right arm and hand and I’m really bad at doing what I need to do to contain it. I’ve also developed lymphadema in both ankles/feet. I thought at first it was just the steroid-induced water retention, but I haven’t had any Decadron since April and the swelling is only getting worse. When I asked Dr. Patel about it at my last appointment he confirmed that it is lymphadema. Apparently having had such a major pelvic surgery it’s not uncommon to have some permanent lymphatic disruption to the lower extremities. Great. Yet another permanent side-effect of cancer. My hair is growing back, but at a much slower pace than previous grow-backs. It is also still very thinned out on the top of my head. So I don’t know if I will ever fully recover my whole head of hair, but I sure hope so. Even though it is long enough now I am still wearing hats most of the time because of the thinness of my hair. My eyebrows are back, but my eyelashes are still struggling. And that’s where my body’s at with cancer. I still have a very high likelihood that the cancer will prove itself not gone. It takes a miracle to beat Stage IV cancer. But every day I step further away from being proven NED (no evidence of disease) is a day my odds of beating it improve. So I just keep working on being grateful for every day, no matter how monotonous. And I’m working on getting a routine, a stride. Amanda’s back in school, a sophomore this year. Jared’s starting 7th grade, but doesn’t start until after Labor Day weekend because he’s going to attend a private school again this year. Al’s still working and struggling to get back to college. And life just goes on……………. it’s a good thing the world doesn’t stop for my struggles. Nothing would get accomplished!


Always in His Grace~


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