It’s been one year already since I last devoted myself to writing. While the year was really long, I still seem to be measuring my life in three week increments, and in that sense, it has gone by way too fast. It’s really difficult to motivate myself to write anymore. I feel caught between two worlds- the land of the living and the land of the dying. The majority of people I know are healthy, are carrying on about their lives as if they have forever. But there is a circle of people I have intimate exposure to because I am a cancer patient, who are not healthy, who are fighting for their lives. And here I am, somewhere in between. I distinctly recall going through this sort of phase shortly after finishing treatment the first time- the dilemma was, how do I get from saying “I have cancer” to “I had cancer?” But in the big picture I was able to get through that fairly quickly, and resolved that I was done with cancer and its treatment, as I started grasping onto the future. Seeing as I stopped aggressive chemotherapy in 2007 for the second time, I can say that it’s taken me a lot longer to get to this phase of transitioning from the “have” to the “had”, and the phase has lasted much longer too. I know a big part of that is because I will never be able to truly move on- cancer treatment continues to be the thorn in my side. So sometimes “having” cancer is a lot more convenient of an explanation that trying to say I “had” cancer, but will be in treatment for the rest of my life. People have a difficult time understanding that I “had” cancer, but technically am not cured, and even though there’s not a single piece of evidence that cancer is still in my body, I have to remain in treatment indefinitely. But even more important than developing a pat-answer for inquiring people, integrating this process of acceptance into my reality of living with ‘palliative care’ is essential. (What an odd concept- palliative used to mean one was essentially dying. Now, who knows what it exactly means)?
The big picture of my cancer journey has really come into focus for me lately, as we’ve turned the corner on the first decade of this new millennia. It’s encouraged me to look back on the past ten years. Ten years is not an incredibly long period of time, but when measured within the normal human lifespan, we only have about 7-10 decades of life in us, if all goes as planned. And in ten years a big chunk of life is lived, and lost. It’s the difference between a 10 year old and a 20 year old, a 20 year old and a 30 year old, a 30 year old and a 40 year old. In May it will be eight years since my cancer diagnosis- almost an entire decade. And last month I turned 38 years old. At nearly 40, I am just not where I saw myself as being when I was a wide-eyed 20 year old, or even a much wiser 30 year old. Truthfully, once I was diagnosed with cancer I didn’t see myself living a day past 35 years old. So for whatever reasons I have been blessed with much more life than I believed would be graced to me. But what do I do with that life? I still feel myself floundering. Looking at the bigger picture, I am encouraged though. It’s so hard to see the forest from the trees! But sometimes God graces us with small clearings so we can catch glimpses of His most amazing works. Getting a hindsight view of the past 10 years, or more specifically, the past eight, I have seen God’s Hand at work during times, and within situations, that I didn’t feel like God was working through at the time I was going through it. There are many examples. My frustrations with my job led me to seek another job, which I doubted, and felt tremendous animosity about. As it turned out, had I not changed jobs, getting through cancer treatment would have been much more difficult because the new job (and the people who worked there) turned out to be a big blessing for us in so many ways. God knew. And the same with Al’s job. Had he not had the job change he had in 2002, he would not have had the flexibility that allowed him to accompany me to chemotherapy treatments, to be there as much as he could for the many hospitalizations, or to do any of the things that being a caretaker demands. God knew. Even in the husband that God sent to me, He knew. Al and I talked about him adopting the kids before my cancer, but we neither had the resources or the sense of urgency. It is much more than coincidence that 18 months before my diagnosis his job change allowed us to get pre-paid legal services through his new employer, which paid 100% of the adoption fees. The sense of urgency came to us after my diagnosis, but the resources were already in place then. God knew. I could spend pages sharing the obvious signs of Divine intervention around my cancer diagnosis. But even in this clearing, I still find myself surrounded by forest. I do not know what the future holds, or which direction I am supposed to go. I’m just sitting, and waiting, dabbling a little here, dabbling a little there, but with no clear path ahead. I feel like I’ve been writing about this sitting and waiting stuff for too long now.
Here we are at 2011 already. Looking back over the past decade, the over-arching theme has been about letting go. And this past year has been no exception to that. We’ve had to let go of some financial stuff, and even our vision of the future, as Al’s employment situation is precarious, and our home is falling down around us. In the big picture, this stuff doesn’t matter, but it’s still disheartening to work so hard and find yourself in a very different place than you expected to be. The biggest challenge for me has been letting go of my career, and being so uncertain as to how or when to pick up the pieces of that again. It’s so difficult to work full-time with my ongoing health issues, and equally as difficult to secure a job in this economy which would allow me to take more sick time within a month than I could accrue. And not working means an uncertain financial future and a certain plateau in our income. Last December (2009) we went to Arizona to spend Christmas with my grandmother. My parents met us out there. We didn’t plan to confront my grandmother about her living situation, but seeing how she was living, and her increasing frailty and inability to physically maintain her huge home, we ended up doing just that. We came together and expressed concern for her, urging her to consider moving into an assisted living environment. While she has since done that, at the time, it was very hard for her to accept. She protested, and cried, and felt very sad about the prospect of letting go of her home, her belongings, some of which she has had for over 50 years. I understand. We get very attached. And if it isn’t to things, it certainly is to people. In April Justin deployed with his unit to Afghanistan for a year. In September Amanda left for UCLA. Yes, they do grow up and leave home. We’re standing in the gap of active parenting with adolescents and transitioning to being mentors for young adults. I anticipated it would be a difficult transition for me, but more in terms of navigating the waters to avoid making the same mistakes others have made. What I underestimated was the emotional adjustment it would demand of me. It’s required a lot of letting go. Letting go, but while still holding on. It is a bit precarious, like monkeys swinging from limb to limb. One would think a parent could never let go completely, but there have been plenty of situations when mothers have completely shut out their children because they weren’t living up to expectations, or have failed to uphold their end of the relationship. And the hardest thing to let go of in terms of my role as a mother has been expectations. The Bible says of the Proverbs wife that, “her children will rise up and call her blessed” (Proverbs 31). I guess we’re just not at that point yet? I’m starting to have glimpses of this, but they are just glimpses. And as my older children struggle towards independence, they are much more aloof than I expected they would be. I know it probably sounds narcissistic to be so needy, especially in the face of the normality of young adult detachment from the parent. But I sort of set myself up for this, as my kids have been my motivation to get through the past eight years. Along with this has come some sort of expectation about what I would get in return- the respect and love of my children. But we’re just not there yet. It’s not that they don’t love me, but they’re going through the normal detachment process. As my confidant pointed out, there’s a tear-jerker scene in Terms of Endearment when Debra Winger’s character says ‘goodbye’ to Tommy (her aloof and hostile, young son). Dying from breast cancer, from her hospital bed she tells him, “I know you like me. I know it. For the last year or two, you’ve been pretending like you hate me. I love you very much. I love you as much as I love anybody, as much as I love myself. And in a few years when I haven’t been around to be on your tail about something or irritating you, you’re going to remember that time that I bought you the baseball glove when you thought we were too broke. You know? Or when I read you those stories? Or when I let you goof off instead of mowing the lawn? Lots of things like that. And you’re gonna realize that you love me. And maybe you’re gonna feel badly, because you never told me. But don’t – I know that you love me. So don’t ever do that to yourself, all right?” The Cardinal’s wide receiver, Larry Fitzgerald shared a similar testimony of regretting being estranged from his mother during his transition to young adulthood, as his mother passed away from cancer during this period. As a mom, I have thought about the possible regret my kids might feel, and have wanted to ensure they didn’t fall into that. Life doesn’t stop for cancer, and one thing that’s been painfully clear, kids don’t suddenly develop beyond their ordinary developmental stage just because a parent gets cancer. But I think because I am not at a place of dying, my focus has been less on that (because there’s no regret that can’t be amended if I don’t die). It is a selfish sadness that overtakes a mother when her kids don’t immediately “rise up and call her blessed.” But I don’t think it’s extraordinary. We can call it “empty nest” or a whole host of other things, but at the heart of it is the work of letting go.
Last Spring we spent some time at the coast with a friend and his then four year old son. This little boy, like most little boys, had discovered the wonder of entomology, and was singularly focused on hunting out and trapping bugs. Well, he found a good many. But the most abundant (and exciting) were the ladybugs. In one insightful moment he had trapped a ladybug in his cupped hands, and as his hands squeezed tighter and tighter, his mother warned him to let the ladybug go, or he would kill it. The threat of being forced to let the ladybug go only made him squeeze tighter. He would have rather squeezed the ladybug to death than let it go. We could assume that a four year old knows nothing of death, but he knew enough of it to not want to let go. So it must be human nature to hold on at all costs? Certainly cancer begs it. We fight, and fight, clawing our way through treatments, surrendering only when all hope is gone. Letting go means dying, in this sort of existential dilemma we face. We are but clay. Somehow we grasp onto things, sometimes we dig our fingernails in with all the determination we have, and always we are desperate to hold on, while we resist letting go. Yet, it is futile, as we are all decaying. Everything around us is decaying. Buddha said, “you only lose what you cling to.” In other words, if I don’t cling to it, I can’t truly lose it. It is a practiced non-attachment. But to think that one can get through life without any attachment to anything or anyone is foolish, because it’s simply in our nature. We have to be willing to let go, and then do the spiritual work. But even if we achieve non-attachment in small ways, there is no escaping the significant amount of work (working through pain, grief, loss) it takes to get there. Well, at least for some people. But even for the most spiritual of people, we can’t help but cling to our closest relationships- our spouses and children. Jesus said that “whoever wants to save their life will lose it, but whoever loses their life for me will find it” (Matthew 16:25). So having a life means being attached to people, things, ideas, beliefs. Losing one’s life so that one can truly LIVE means letting go of everything and clinging only to Christ. Jesus also said, “If anyone comes to me and does not hate father and mother, wife and children, brothers and sisters—yes, even their own life—such a person cannot be my disciple” (Luke 14:26). Learning to hate one’s life is the most profound work of letting go!
We recently watched Restrepo, which is a compelling documentary about a unit of U.S. Soldiers in Afghanistan. Seeing that Justin is currently in Afghanistan, it might seem to some like there is little wisdom in watching these sorts of things. I’m not particularly anxious about him being there- well, not to a point of that I can’t watch the news or watch documentaries. I appreciate that these things can give me a better idea of what it could be like for him being there. But even more than that, I find these types of stories compelling. I learn from them. Restrepo documents the time that a particular platoon of guys spent in Afghanistan. There were casualties amongst them, and as in I Survived fashion, the survivor’s stories were told by themselves. One particularly effected guy seems to be struggling emotionally much more than any of the others. You can just see it in his eyes, the burden on his face. But he admits that he does not want to let it go. Holding on to the experience of losing his battle buddies, of coming so close to death himself, “reminds him of what is important.” Some people slough stuff off and just go about life as if nothing has happened. Other people grapple with learning from such profound experiences, with integrating them into their beings. The latter is a much more difficult place to be in really. I tend to be much more like that young man in the documentary- I am deeply affected by things, and I don’t want to forget. I know it seems impossible to go through such a thing as cancer and to forget, but it’s easier than one might think. I’ve met plenty of people who just “let it go”, refusing to allow it to really change them. Indeed, the ability to let go seems to me to be at least partially dependent on the degree of investment one has in letting go (or not). This became crystal clear to me when last semester (Fall) Jared and I attempted to take a pottery class together at the local junior college. I was hoping he could get some high school elective credit, and I had always wanted to take the class myself. But, being that he is a high school student still, he had a delayed registration period, and by the time he was able to register, the class was full. I got in the class, but he got on the waiting list. Most of the time one can show up to the first class and just continue to attend, waiting it out until enough people don’t show up or drop the class, and then you get moved from the waiting list to actually being enrolled in the class. So Jared and I went twice a week to class and started on the big project we were tasked with. I bit off way more than I could chew with my conceptualization of the assignment, and it caused me to have to spend many hours working on the project outside of class hours. The days drug on, the weeks drug on, and by the time the ‘drop to get full refund’ date came and went, we were told that Jared didn’t get moved into the class from the waitlist. If I continued in the class I would be unable to take the class a second time, and I really wanted to take it with Jared. So his not getting in meant me dropping the class too. We had worked on our projects to the point of them being ready to be fired in the kiln. But the instructor said that because we hadn’t paid the materials fee yet (actually I had paid, but was unable to pay for Jared because he was never registered for the class), we had to recycle all the clay we had used in our projects. In other words, dump them in the wasted clay recycling can. I had spent hours upon hours on the project- gave it the best of my vision, aspiration, skills, and time. Letting go was very hard. It was so hard that Jared actually teared up. He was proud of his piece. So because I had paid my materials fee and it was past the refund date, I persuaded the instructor to allow Jared to keep his piece in lieu of mine. She fired it for him and a few weeks later we picked it up. He brought it home and painted it. All I have left of all my hard work is a few photos I took while I was still working on it. Amanda had a similar experience recently when a couple pieces she created in her IB art class got wrinkled up under her bed. She came home on winter break to find them in less than pristine condition and she got emotional (cried) about it too. We want those things that represent parts of ourselves to survive forever. The fact that everything around us decays is a painful reminder of how mortal we are. And letting go of things can, in the deepest recesses of ourselves, remind us of our own eventual death. So, as much as I enjoy creating and have considered majoring in art, I think that is the one thing I would struggle with more than anything else- letting it go.
While this past year I’ve continued in a healing process, I am also aware of how much healing I still need to do. Last Spring, right before Justin left for Afghanistan, he was able to take leave and he and Brittany came out to stay with us. We made a trip to Disneyland. I rode Space Mountain for the first time since Al and I took the kids to Disneyland after we got back from our honeymoon in 1999. I used to love those sorts of rides, but since cancer, that is one of many, many things that has changed. During the ride I felt an overwhelming anxiety, and then flooded in the sadness. The anxiety brought to surface all the medical trauma that I have experienced, and it was all I could do to hold back the tears. I wish I could articulate it better, that I could predict and understand what triggers these ‘pressure valve’ releases. What an odd experience that a roller coaster ride, a motorcycle ride, a tattooing session, a yoga session, could bring to surface the deepest of emotions, all tied to my experiences with cancer treatment. All of these experiences have shown me that scuba diving is, unfortunately, not something I could ever really enjoy doing. I share this because Al has expressed great interest in scuba diving, and this past year has finally had the financial means to pursue it beyond the initial certification he earned when we went to the Caribbean in 2007. He has acquired additional certifications, and in November he and I took a trip to Catalina so he could dive. I stood on the sidelines, on the land, while he explored the underwater world. I know that he wishes we could enjoy diving together, and it’s not that I have no interest. I just know that through all the trauma I have become claustrophobic, and having to wear the mask, and breathe through this mouthpiece in my mouth, I would most likely panic, as many people do when they try scuba diving. Al does well at it. But even he admitted that he has had to self-talk to prevent his anxiety level from rising to a point of panic. That takes mental concentration and work. I know a lot about that because I’ve had both successes and failures in taming my deep-seated anxieties. But I think because those have all been in the context of medical trauma, it’s an emotional association that is difficult to break. Taking on the task of taming an anxiety in the context of doing something “fun” and recreational has lost the value it once may have had. Or maybe it’s just me? Maybe life itself has sort of taken on this tainted quality that makes it less valuable to me? In a context of having to let go of so much, very few things seem to have any value. But maybe “value” isn’t the word I’m really wanting to use? I think that prior to cancer any anxiety I would need to work through to participate in something such as scuba diving, or riding a roller coaster, would have been a much easier process with a much more enjoyable outcome. Since cancer, I now bring all the medical trauma to the table with me, so the process of working through any anxiety is so much harder, and the outcome is so much less enjoyable than it once was. I think some call this “existential despair”. So yes, these moments remind me of how much healing I still need to do. It’s an inner healing, a very deep healing, one that may take years, and I may never fully realize until I reach eternity. But, if it was just so easy as letting it roll off of me, and there was no struggle, no brokenness, how would I ever truly experience or be able to share the spiritual healing that my heart cries out for? We cannot know the value of joy, except in the face of sorrow. “Blessed are they who mourn, for they will be comforted” (Matthew 5).
This coming year will be as equally challenging as the past year has been. One of the things I have struggled with has been accepting the changes to my body since cancer. I have acquired many more scars than I ever dreamed to have at my age. I have lost my breasts. I have lost my internal female organs. I have lost a whole lot of hair. I have lost some bone. Long gone are the days of strong bones, thick hair, long nails, and full eyelashes. But I think even more significant than that, I have gained 100 pounds. I was already overweight when I started treatment in 2003, so adding the weight I gained throughout treatment, I am now 150 pounds overweight. I can make a good number of legitimate excuses- steroids, sedentary from treatment, neuropathy, lymphedema, fibromyalgia, eating to ease nausea, to name a few. But it is what it is. The risks of obesity are obvious, but the one profound additional risk for me is the significantly higher risk of cancer recurrence. My c-reactive protein levels have been twice normal for quite some time now. C-reactive protein in a measure of inflammation in the body, and inflammation has been strongly linked to cancer risk, as well as heart disease. This chronic inflammation in my body is undoubtedly due to my excess weight. So the signs are all there- my body is a ticking timebomb. So I’ve made a difficult and well-researched decision this past year- I am going to have bariatric surgery. I have jumped hoop after hoop over the course of the past year, and have finally gained insurance approval for a laproscopic vertical sleeve gastrectomy (VSG) procedure. I have chosen this particular procedure because it does not have the malabsorption issues that the bypass has. I absolutely have to have high doses of vitamin D (which they are now linking to cancer), calcium, and vitamin B-12 to treat my osteopenia and neuropathy. So the VSG will allow me to continue to take the high doses of these vitamins I need, without any problems with absorption. I am excited about the surgery and the weight loss and other health benefits I am anticipating- I just want to reclaim some of what I lost. But it means giving up over half my stomach. And even more than that, it means giving up foods. Letting go. As silly as it sounds, I am expecting this to be a painful struggle for me. I wouldn’t go so far as to say I am addicted to food. But I would admit that I have an emotional attachment of some odd sort. So this surgery is probably going to stir up a lot of sediment. It’s more than just the emotional losses that are coming, but I am also anticipating the physical consequences and accompanying emotions. I’ve been through a lot of medical trauma. This will be yet another surgery in my long list of surgeries. More scars, another experience with anesthesia, another hospital stay, and another trial of physical healing. More loss. I know it cannot be any worse than anything I’ve already been through, but it will bring to surface all those experiences- the sights, the smells, the physical pains, etc. I dread this part of it, but look forward to getting some of this choking weight off. My surgery is scheduled for February 10th, and will be out of town. I know it’s going to be difficult for many people to understand- surgery seems so drastic. But I am confident that, given my medical issues and current state of health, it is the best decision for me. Much more is at stake than just looking and feeling better. This is a big piece of me being able to move forward. Most people who choose to have bariatric surgery are very private about, some not even telling their own families. It is a very personal decision and it tends to solicit strong opinions. I open myself up on this issue only because I know that not only are there many people suffering with obesity, but there are also people who have gone through cancer treatment and who have been left with significant health problems because of it. Weight gain is one consequence of treatment for some people. Yes, we are given back a hope for survival, but we’re left with the wreckage that cancer treatment has caused. Some women choose reconstructive surgery as part of their processes of moving forward. For me, a hope at losing and keeping my excess weight off is a necessary step in moving forward and a big step in the healing process. So all I ask for is your prayers as I take this giant step and work through the healing. I am curious to see what all this hard work will do for me and who I will be in a year from now………….
Always in His Grace,
“How does one become a butterfly?” she asked pensively. “You must want to fly so much that you are willing to give up being a caterpillar.” ~Trina Paulus~