How to Move with Metastatic Cancer (hint: HELP!)

How do you handle huge life events with metastatic cancer? As best as you can and with slow determination. Asking for assistance from your friends and from your family sometimes doesn’t pan out. I have a wonderful friend I made years ago at a garage sale. She was a couple of dollars short and I’d covered her so she could enjoy a few vintage ceramics and beads.

Now, six years later Des is my friend and Des is my housekeeper. Through the course of time we’d found commonality in our eclectic eye for beads and for jewelry making. We drudged through the stress of packing, readying this memory box of 1600 square feet to move its contents elsewhere. We actually live in a pretty nice townhouse. If you’d like to check out my amateur “staging” here’s the link to the sales materials including a 3-D rendering and a video.

Removing the traces of 11 years of memories as eclectic and varied as the beads I collect brings about a sort of melancholy to my heart. Des came over to help me pack as we sell our townhouse. She also refuses to take a dime because what once were services have shifted into the kindness of a friendship. She commented that I’d give the shirt off my back, which I literally have done several times in my life. She said she couldn’t possibly take money from me when clearly I was the one who needed help right now.

My husband made sure she got paid for it, since she cannot afford the time and I cannot afford the intense guilt. I’ve never needed so much physical assistance before. I guess I’ll chalk it up to age and leave the cancer for another time. But I can’t, because it’s for the cancer we are moving and due to the cancer that I need help.

All the kindness I have shown her was reflected back at me in ways I never imagined. When we give it should never hold the expectation that we may receive something in return. But as my philosophy about karma is not to do bad in the world as it keeps you looking over your shoulder at whose anger is behind you. Then you cannot see the good that’s right in front of you and you either miss these opportunities or trip over them and fall on your face.

A change of residence is very high on the stress scale

My stress adds up to just under having a 50% chance over the next two years of having a catastrophic health event. I think I’m already there so I’ve beaten the stress scale by four and a half years. But looking back I had a very low level of stress in my life in the years leading up to my diagnosis, so go figure. Perhaps the subconscious predicts stressors before they arrive to eat us alive. I was planning a change of career and the very day – March 15, 2015 – was the same day I was diagnosed in the hospital and the day I was supposed to start a new job.

You Oughta Be in Pictures!

The house really shows well – I’ll have it even more staged for our open house on Sunday. There is so much work to do after living a full life for 11 years in a home. And our home has been really good to us. I’m grateful to it for giving us positive memories, but it’s time to close this chapter in our lives and move onto the next chapter .

I know intrinsically that this house will be wonderful to whomever buys her next. It’s stable and so well cared for and we feel bittersweet selling her but we leave it with good love and positive energy. After searching for our new digs, I believe you can tell if people who lived in a house were happy and if it looks like a product of divorce or ugliness. Not so here!

The Zombie Apocalypse

In the state of California, if someone died in a house in the three years prior to selling it you must disclose that event to the buyers? I found it morbid and kind of strange. our culture’s obsession with first person shooter games, zombies, and horror films directly opposes the feelings of disgust when faced with real death or the dying. I’d think people would be desensitized to death rather than creeped out by it.

It’s a huge decision to invest into a house. Love, time, energy, money and holiday spirit, all paint it the colors of the personalities who reside inside. Our next home will likely be my last move, my last address, the last place my name will be printed on mail and arrive in my mailbox. Maybe the quote about dying twice – once when your physical body dies and the last time someone says your name aloud – should be corrected to dying three times if we include the last time your name is printed on junk mail. I bet junk mail lists last a lot longer than even the youngest people who might speak of me later given the tenacity of mass marketers.

Oh, and I’ll submit this: if the last time you posthumously receive a piece of junk mail addressed to you is the last whisper of your name what does that say about our culture when we cannot even control having our online avatars removed from Facebook and Twitter. If that’s all true, then we’re all going to live forever. A planet of the walking dead carrying sacks of marketing materials for the Red Cross and coupons for barbecue. The zombie apocalypse is upon us.

The Gift of Receiving Care

Is it Really Better to Give?
Accepting help, offered or requested, connects people to one another, often unpredictably. Consider the emotions you derive from your own experiences on the receiving side of someone’s heartfelt giving. It’s so much easier to define our emotions such as satisfaction, graciousness, love, friendship, and joy when giving to others. Paradoxically, many of those we consider “giving” individuals have the most difficultly in receiving help. Even compliments and gifts can seem regarded as uncomfortable as shyness and embarrassment meet with our words. Yet we give to bring about a positive result. Then why do some of us on the receiving end regard “taking” as a negative state, accepting gifts of the heart with feelings of neediness, dependency, expectancy, and worse disappointment?

As far as caregiving goes, on the surface our intentions usually mirror the best possible interpersonal upsides of acceptance. Receiving graciously in this interaction promotes deeper intimacy in our relationships by suppressing the need to control others and situations, and hopefully heartfelt reciprocity when it’s the giver’s need that we fulfill. I’m guilty, if nothing else, of giving until perhaps my friend, relative, or partner feel overwhelmed or suffocated. On the other hand, I’m absolutely terrible at accepting assistance of any kind.

Why such tension arises between give and take became clearer to me only recently in my continuous self discovery process. It’s more important to me now to better communicate with those I respect and love the most. With a metastatic cancer diagnosis it’s imperative that I humbly – and graciously – accept aid, comfort, support, and help with an open heart and mind. My well-being depends on it. And from various places, including anonymous sources.

But how do we take when we, especially women, are rewarded as caregivers? This past month I learned through the process of giving how to better accept care and help gracefully and with deepening gratitude. Allow me to walk with you on a path for a while. It’s a road that led me through caregiving/ care-receiving experiences after three and a half years post metastatic breast cancer diagnosis. My experiences demanded I understand why it’s so critical to graciously receive from others for my wellbeing. My understanding of the motivations that pushed away help, also allowed me to become a more compassionate caregiver. The importance of being present and truly listening allows me to focus on giving what’s needed, rather than what I believe should be given with uninformed assumptions.

Three Categories of Care
Here’s a breakdown of the major categories without exception, in which my own offers of aid have come (your mileage can vary):
1. Personal care from friends and family, some of whom offer very general lending of hands, including the insincere proffering of “whatever you need I’m here for you.” In my experience, if a friend or family member can emotionally handle me as a mirror of their own mortality and remain an active part of my life, then their help requires listening to my needs and wants. The best listeners also use specificity in their offers, and if I actually accept, rarely matters. They also follow up with true execution. I confess I’ve resisted offers of personal caregiving due to the embarrassment of possible disappointment, or on the flip side, the fear of a closer interpersonal relationship. No, it’s not a very good modus operandi.
2. Medical and psychological assistance, which are somewhat compulsory to the process of becoming a cancer patient. This includes palliative oncology specifically designed around my wellbeing, not just oncologists and pharmacists.
3. Institutional assistance from non-profits, various levels of quality cancer programs, and financial aid. On the whole these institutions focus on the process of receiving what’s been offered and thus requested and result in little more than paperwork. The few instances when the promise of assistance met with what I was led to expect. Indeed they’re equally as rare as exceptional. The warmest fire in this dark cave I entered upon my MBC diagnosis: the Cancer Help Program at Commonweal.

Prior to the current generation, most of us had been brought up believing we are valued for what we do for others and what we do for a living – not what we do for ourselves or for what’s given to us as a deserved prize for our mere existence. We won some we lost some. Our wins became the best way to show our parents, teachers, and higher ups our worth. What a deceiving reflection of the strength or weakness of one’s character. Conversely, we typically don’t understand how our gratitude and graciousness in the act of of receiving strengthens and broadens our own humanity. It’s in receiving we can really find the value of true spirit. Rather, we associate receiving with guilt, even with “guilty pleasure.”

Such a stark contrast to the help we need, and in my own case, silently crave, given cancer’s devastation of life, friendships, family, and finances. What a mess.

Care Giving and Care Needing
Black and white, 0 and 1, open and shut, sick or well. The gray and pink and purple and cloudy views make life vibrant and, at the very least, interesting. Yes, computer programming raises the sea level on the importance of valuing black or white thinking: on (1) and off (0). Yet human beings, like the world we perceive, are alive with all the hues of color and the levels of clarity or opacity of our emotions, we find windows ajar, just enough for us to open wide and allow the sunshine to enter or to close the shades tight to shut out the light.

If we choose to open those windows, the world invites us to take a look outside, where we may also find other people’s pain or needs beckoning for us to help. While those times may overlap with our busy schedules of “doing”, we can easily make room to give of ourselves including physical, emotional, and financial gifts. My home recently overflowed with giving when a friend underwent a total vaginal hysterectomy (TVH). Her stay with us included pre-op appointments as well as the time it takes for at least the first few weeks of her subsequent recovery. She’s become receptive and gracious in understanding that her needs had to come to the forefront over the daily duties of motherhood for a little while or she’d lose her ability to go back to a life of supermom and caregiver.

As a mother of three great kids, whom she raised primarily on her own, she knows no boundaries when it comes to giving. She’s the kind of mom we all wish we could have in our life if our own was not able to meet our needs as children. My own case included. She and I came to know one another through her eldest daughter, Arihana, who fought Hodgkin lymphoma for five years with her mother at her side. We met when she was dating my oldest stepson and we tightly bonded through the unspoken language of cancer patients. Her mother needed to know “who this woman was.” And so she did. Fast forward a couple of years and our friendship grew and blossomed into a trusting and lasting close relationship. I came to find her an amazingly resilient woman and see her in not only as defined by her role as “parent.”

She got through the TVH – and booted from the hospital after only 23 hours, which the insurer deemed the medically necessary recovery post operative period of time. I was enraged at the neglect of our patients as I truly saw, once again, how broken healthcare in the United States – first world country, indeed. But that’s for another post. Back to my friend – she needed about one month’s time to calmly and peacefully recover just enough so that she could return to her role as a mom again. It really takes about six months to heal the internal physical wounds from this ordeal, if the psychological and endocrinological wounds ever do fully heal. I had to make the notion abundantly clear that she needed to find a comfortable way for herself to become accustomed to accepting help, at least temporarily. She didn’t have to ingratiate herself to me for my caregiving, and her recovery in and of itself became my reward. My ability to understand patient advocacy and quickly learn and integrate medical knowledge strengthened my already motherly demeanor. I understand now, as she held a mirror up for me to reflect upon my own shortcomings as a patient, that I am someone who can not accept help easily. Aghast, I also saw the pain I had inflicted on others in my life for rejecting their help and care. Feelings of guilt, shame, and just bad form came over me in waves. Through the looking glass of her resistance of my care, my own notion of receiving with humbleness and gratitude changed significantly.

Perhaps I would have done some things differently during the darker times of my husband’s depression. I reconsidered my role of caregiver, which I thought was already second nature to me. I am learning to become the person my husband needs not the person I assume he needs as over the past three and a half years. He suffers from dysthymia and anxiety brought on by his lifetime battles with OCD. How much more emotionally debilitating than to see someone you love so much suffering and in need, yet reject the care offered and sometimes given without asking? At times I had to do so against his confrontations and anger in the name of physical health during periods when he wouldn’t eat or drink. Without my care, he’d have damaged himself irreparably.

Men don’t accept or ask for help. They believe it’s weak. Brought up to provide not to accept support, to him this would leave him with an empty hole of vulnerability. Vulnerable to being further emotionally pained. And more pain he doesn’t need. I’m grateful for his support before and after my diagnosis, but he sees it quite differently through a lens of depression. Those glasses darken even the most selfless of acts into feelings of suspicion and cast a pallor of doubt onto anything outside of normal day to day wifely duty.

An Infusion of Love
With cancer we lose ourselves to our disease. Our human-ness is replaced by our patient-ness.

This week after finishing up at the infusion center getting my port flushed and bloodwork done, followed directly by monthly injections of Faslodex and Xgeva , I feel tired and sore and my mind wanders into thinking about my mortality and metastatic cancer. Just as I was about to leave Stanford cancer center, My friend, with whom I’d learned so much about receiving through giving, sent me a text asking if I would like to have her treat me and my husband to a delivery of dinner for the three of us rather than having to cook. In a millisecond, and without thinking, I sent her a text expressing my gratitude for her understanding my needs and graciously accepting her dinner offer.

I didn’t feel like she rejected the food I had cooked each day, nor did I feel like my love of cooking and my skills as a home chef were being slighted or diminished. I’m not the food I serve, per se, and I truly feel a very humbled warmth by showing love through nourishment. But my cooking skills aside, which represents only one facet of who I am as a human being, I need help far more than accolades on these injection days and during the few days thereafter.

It took some soul searching to admit this to myself and to discern the true meaning of caregiving from my own egocentric resistance to receiving, as well as a childish need for praise I never received while growing up. Judgment of what I do versus who I am drove my overwhelming need to give in the past. I am much happier today and more comfortable with infusions of true help and caregiving, which I accept as it’s offered: kindness towards me in the most human and most vulnerable experience in my entire life. Cancer isn’t a gift, but I give myself the gift of insight into my emotions and my actions arising from a daily look into the infinite canyon. And giving happiness to ourselves sometimes can be the best gift of all. My smile, rather than my tears, brings people who care about me much closer and I’m more open, and yes vulnerable, to receiving love than ever before. But I’m comfortable now with that kind of vulnerability.

For this I am grateful, and I thank you for giving me your attention.