Empty

Jenny here. I've been avoiding blogging. I've more or less been mulling over this post for a few days now and it's all a jumble.

I can't say why exactly. At first I told myself it's because I'm tired. After all, I said to myself, we have been at clinic 2-3 days a week (totally 15+ hours with drive time).  Plus the full time work and cooking every day the immunosuppressed way (meaning it's more time intensive for me, the cook, with more frequent shopping trips, more cleaning and prep time for foods, and not being able to eat left overs).

Then came the addition of Wil running a low grade fever on Friday night (me rushing home from work mid shift thinking we'd be in the ER), both of us scared.  He hovered around 100 degrees most of the night, but I'm happy to report it came back down...and then back up...and then back down. It meant a long night of hourly temp checks. And then Sunday morning it was back up...

Side-note:  Every clinic appointment they quiz us about the magic number. 100.5. See, with cancer, a 100.4 temp means start driving to the hospital because, with a bottomed out immune system, a 100.5 temp can be potentially life threatening.  They say to us:  "What's 100.5 mean?  Pack a bag." It could mean flu, infection, or a whole host of other equally not good stuff.  This will probably not be the last scare, I'd imagine. He's just been tolerating everything SO well it got comfy. But we know we are still in the beginning. This is our week 6 of 6 in the first round of the heaviest chemo. Many more rounds to go this year. With each one his body will be broken down a little more. We keep a packed bag in my car for Wil *just in case.*

Sunday morning we had an early weekend clinic check. WBC was up to .4 from .2 (normal immune system people range from 4-11) and a platelet count of 7 (compared to him being 110 when he left the hospital after cocktail B...and normal levels being >150). Thank you volunteer donor W035214106036 for the platelet transfusion while we watched the Illini play and had juice and crackers. The transfusions, we are told, will become more routine as we cascade further down the chemo rabbit hole.  The transfusions, combined with drugs for anti-everything (bacteria, fungus, viral) and the neulasta shot...they keep Wil going and fighting.

Today was another clinic visit and levels were looking up. WBC was 4.1 (out of neutropenia!) with platelets at 35 (we need 100+ before next chemo cycle). Liver is back to normal from this last round!  He is sleeping, eating, and getting around. Other than body bruises from the low platelets and neuropathy, he is feeling well.  So well, in fact, he DROVE to get tires on his car today...just a mile away, but the first drive in over 4 months. I think I may have felt what parents of teens feel. "Take your time. I will be right behind you. Don't play with the radio. Keep enough distance between you and the other vehicles."  How annoying I was today!  I am not sure I was actually taking in air anymore as he backed out. I know I prayed the whole way to the shop. I saw him bobbing his head to music (Wil later said "but it was Bruno Mars!  I couldn't help it!"), using normal acceleration. Heart. In. Throat.

But I'm so proud of him. I took pics of course. Like a first day of school. I haven't seen him smile that big in a long time. That trip for tires was a double blessing today. Bought with kindness from someone we love and a 2 mile round trip drive we will never forget.  It was definitely a cancer can't steal happiness moment.

So it's not that there is nothing going on or things have not been good...I've been feeling...empty. I think that's the word. It's the only one that comes to mind. Or at least in comparison to a few months ago when I was FILLED to the brim with emotion...now I feel kind of empty. It's the only word put on my heart to write about, yet, I'm struggling to be ok with it. Struggling to write a blog about it. I'm not sure I'm even doing the enormous empty space I feel any justice.  I'm certainly not completely empty, but where I used to feel so much, space remains.

When I looked at synonyms for empty, thinking I could find a less negative sounding word, I found vacant, bare, deserted, void, exhausted, etc. Yes, I'm tired. It goes without saying. The nurses remind me often I'm looking haggard when I am coming off a swing shift, sleeping 3 hours, then taking Wil to clinic for 5 hours (self care is an ever evolving challenge). But I feel anything but unfilled or hollow.

So I spent 2 days trying to convince Wil to write a blog entry, and let me off the hook, about the week and his perspective.  I want to know that side of the coin as much as everyone else. I told him to just start, that it would be good for him, that something would come up, that it's all about the process of just putting it out there. Yet, I was not about to do it myself.

Strength. Faith in things possible. Belief in goodness, present and future. I'm finding they look and feel and behave differently at every turn. A few years ago I might have argued that faith and love couldn't dwell in emptiness, yet here I am. At the intersection of both, and encountering empty.  Every day there is something new to experience in this journey. Even when you don't want to.

Side-note Dos:  At these crossroads, I think about my dad even more. When Wil can't eat tomato products I remember how diligently my dad worked to relearn his love of ketchup after his radiation. He knew he loved it. So he kept eating it until that small slice of normal was his again.  If you knew my dad, or some of the rest of us in our house growing up, it was THE condiment of choice.  Out of no where this week I was reminded of a silly "ketchup song" I sang at church.  Thirty years later it means a little more to me than just a fun song about my favorite sauce. "I wanna be filled with the spirit, I wanna be used full and free, but I can't be filled with the spirit, 'til I'm empty of me.  So pick me up, take my cap off, turn me upside, whack me on the backside lord and pour me on the ground. Goosh, gosh, goosh goosh." (Complete with Sunday school choreographed moves of course!). Whack. Cancer. Instant re evaluation. Jenny, Goosh, goosh, goosh. Floor.


The thing is, my life was so very full before cancer. With love and good, yes. But with so many other things that were not serving me as well. Too full. Crammed, overcrowded really. When Wil got his diagnosis, my very first thought was "he may die alone while I'm working my crazy hours. I may lose him but also lose out on the time we have left." Cancer emptied us of dreams, obligations, guilt. Emptied us of the self made expectations for this life.  Opened us for a whole new ending.

See, I'm a little more empty every day. I'd never wish cancer on anyone. But I do hope there is a moment in your life of this...of being expanded, torn, pulled under...of being readied for the next unknown lesson...of being unburdened of the things that just don't matter...casting off expectations so that something new and unplanned and lovely can find a home in you.  It doesn't have to be cancer. I think I was just bull headed enough I needed more than a gentle whisper.
It's not pretty though, because in the emptying process there is so much anger about loss of control. For patient and caregiver alike.

Cancer, one of life's terrifying, surprising riptides. Disorientating moments under water, when there are no more air bubbles to blow, no air left to hold on to, seeing surface is there, longing for air, but suspended, empty lungs, while pulled further and further from the shore you know.

That momentary nothingness, on the edge of everything. Painful, scary, the enormous crushing weight and power of the water around you. Will I have enough to sustain me until I safely emerge?

The emptying is counter intuitive to love and faith but required all the same. The pause, the whack, the goosh...the lesson to struggle less, to swim away from your original plans and instincts so you'll be carried along to where you need to be...realizing there is more oxygen in you than first sensed, and that being pulled is a lesson in trust you can't find without strong currents. A place of quiet surrender to the motion of life as it is right now. But more importantly, a stillness, a place of just enough, emptied of extra weight.  Knowing your nose will breathe air again and be filled.  Saved.

Melt

Jenny here. A few updates on Wil.

He discharged from his second hospital stay, on the new protocol (part B), over the weekend. Other than a few levels taking longer to regulate, he tolerated it well.  Yesterday, at his clinic appointment, his labs were pretty good too.  His WBC, of course, is getting lower so he had a Neulasta shot (usually given about 24-48 hours after chemotherapy to help stimulate WBC growth and help keep him from bottoming out as bad).

So far, Wil feels more achy and tired then at the end of part A. They say part B is easier because there is no outpatient chemo in between the hospital stays. We are hoping that is true, but so far his appetite and neuropathy in his feet are worse than it was a few weeks ago. He is hanging in there as best he can and looking forward to trying an outing to the store and maybe taking a spin around our neighborhood to practice driving. His oncology team is supportive of him getting out, as long as we take precautions, go at non peak times, wear a mask, etc. I know he's been worried about being out and about, but I'm hoping a few times will be good for his spirits.

Wil also had his mediport tested and it's working great. And with that, they pulled his PICC line. It's amazing just how many feet of small tubing was running inside his body from his elbow to his heart. I'm fascinated and like to watch and take pictures. Wil, not so much.

Towards the end of Wil's appointment yesterday, we had a surprise visitor. The doctor who had been the attending on the BMT floor, during dark December, had heard Wil was at clinic and had not seen him since the day he discharged to the SNF.  She came in, introduced herself, and said "do you remember me?"  Wil, being honest as always, said "no."  Her face, like so many others, was pleasantly shocked to see Wil's turn around. She smiled ear to ear. We talked briefly. I thanked her for that day she knelt by his bed and held his hand and told him not to give up, that we had more work to do, that she was not giving up. Not even his regular oncologist can ever truly understand his progress because she wasn't on the floor that month. But in the stillness between updates on his progress yesterday, looking at this caring doctor, and seeing her eyes, her facial expressions. She knows the night we went through. She really appreciated and was just as amazed as I am about where we are now.

I felt the tears well up in my eyes as she walked out the door.  She really meant a lot to me that month.  I heard her turn to the nurse to say, "wow, he doesn't even remember me, just wow."  I may have seen a tear in her eye too.

The tears continued all the way home. I know it pains Wil to see me in my rare moments of meltdown.  He said, "you must be angry with me."  Angry with him?  No. I've had those angry, hurt days about other people along the way, but never him. It's hard, for me, to describe for him what seeing the attending doctor from dark December triggered.  It was if all the memories of that month, the ones I've had to bury to keep moving, the loneliness, the fear, the trauma of it all...melted me into a flood of emotion. Wil doesn't remember. Thank God. But forever, that month will be one of the hardest of my life, certainly of my married life, and one I will carry alone. There are a few folks in our life, like this doctor, that experienced it from their vantage point too.  That remember. My kindred few. But in my marriage, it's a month I will always carry the weight of, without Wil. I guess yesterday just reminded me of that.

The deep pain of cancer is often experienced in unpredictable way. We are still standing. There are just moments of profound sadness too.

I told Wil that I know he gets weary of my wonder, my amazement, my pictures, my excitement in this leg of the journey. I see his eyes roll. (I know a PICC line pull is not a photo opp for most people, for me I'm happy to see one more step happening).

For him, this part, right now, is the hard part. For me, this part feels, in comparison, so much lighter. I am a mix of feelings, but mostly I feel good lately.

We are in different places. But I get it now. I knew he didn't remember that month. But I think, after yesterday, I actually get it.  I wish I could say that having that "aha" moment would make it easier. I wish Wil could feel the lightness of this segment. I wish I didn't have to deal with the weight of it alone. Yet, I am so glad he won't have to carry with him the heaviness I am sometimes strongly reminded of in regards to that month.

Trauma.  It pops up in unexpected ways... a melt of feelings...the liquified, dissolved, outpouring of memories...reminding me I still have healing of my own to do, because those moments are not yet that far away.

Rooted

Jenny here.

Today would have been my dad's 62nd birthday. For many reasons he is why Wil's journey has been intensely reminiscent of my childhood, while also giving me the tools I've needed to keep going. He's the parts of me that are courageously optimistic, at times, and strongly sentimental. Crazy goofy. Fiercely loyal. He was a one of a kind and led me to find another one of a kind guy.

I miss you, dad, for so many reasons.

It's been a big week here for us.  A friend stole me away for a day in Austin to see Wicked again. We had several family members visiting from Minnesota (what could be better then several days of slumber parties with your grandma and reconnecting with an aunt and uncle) and my sister and niece from El Paso.  And Wil was readmitted for chemo cocktail B this week.  I feel like I am just coming down off a vacation or something...then back to the world of cancer and work.  You know that feeling you have when you come back to real life after being gone on a great trip?  That kind of satisfied yet "blah" feeling?  I think that's where we are at this week.

Wil admitted at UTSW on Tuesday afternoon. For round B, before they can start the 24 hour MTX infusion, his body has to be above a certain PH to protect his kidney function. Being the good kids that we are, we followed the instructions and Wil did 2 days of sodium bicarbonate every 4 hours so his PH would be right at the time he admitted. It's starting to get funny these days when the doctors say "are you sure you took the pills?" because at admit his urine still showed a 4.5 PH.  Yes, he took them. No, Wil's body didn't react the way others would.  This meant delaying the start of chemo and pumping him full of both pill and liquid sodium bicarbonate. For 24 hours Wil was giving samples every few hours until he reached the magic number.

The PT was training in a new employee yesterday morning and introduced Wil as their "rare and delicate flower" of the floor. We all laughed. Wil is just...unique. The word he has always used for himself seems to be validated at every turn.

So far he is tolerating this round well and will be on to 2 other chemo drugs this afternoon, following the end of the 24 hour MTX at 1pm, including another spinal tap chemo tonight.  My flower is still continuing to thrive, his spirits better this week after our company.  Rooted.

I have always loved the musical Wicked. Who doesn't get chills and tears during the defying gravity act?  That has always been my favorite moment. That, nothing can stop me, limitless, inspirational moment in the show.  This time though, it was during the song "For Good" that my heart melted more. Yes, it's always been a great moment in the show as well. But on a day with family flying in, on a trip a friend stole me away on, less then a week from my dad's birthday...the words "I'm limited" in the song no longer were a damper on the high flying magic of defiance in the first act. Those words gave me a chill. And they melted me into tears.

To defy the odds.  To be changed. To make an impact. To soar.  To be and do and succeed...these things always require more than just a set of circumstances. With it, the added element of goodness from others is how we grow and make it. None of us are born into this world by ourselves. We were meant to be in relationships and our lives expand because of those relationships. Like it or not, we all need each other.

I'm not saying anything new or profound here.  But surrendering yourself to the gift of family and friendships is where change does take root.  We are all still required to push forward, up and out of the ground we come from, but our roots continue to deliver to us the needed nourishment in the process.

I'm ever so limited these days. We rely on others each and every day to help with dogs, bills, treatment, encouragement. I'm limited but surrounded by people who fill in the gaps. It's my limited-ness, and work to accept that....

Who can say if cancer will change us for the better, but change us forever?  Yes.

Today my sister's and I will hold a glass of rootbeer, dad's favorite beverage, and toast the guy we miss.  Our original root. But we are not without strength because he's not here to celebrate his birthday with us...we are still grounded by the other relationships that have grown in the space he left, the space that fills in with those we now depend on...and with each other.

I guess its not cancer that has changed us for good...it's all the people and arms around us in the last few months that keep us strong and keep us growing that continue to change us and open us. And, at least for me, I can say without a doubt...because of it, I have been changed for the better.    And all thanks to "rooted limited-ness," we can continue to fight to defy the odds.

Light

Jenny here.  Wil had another follow up appointment at the clinic yesterday.  Most numbers are great!  We have figured out that whenever he has a round of steroids (as he did over the weekend) his blood sugars get high and he needs insulin.  The new plan is to teach us how to take his sugar levels and administer insulin if needed.  He won’t need long lasting or daily insulin, probably just for a few days a month when the high numbers are steroid induced. 

We also discussed PICC vs. port.  Before, he was not a candidate for a port, but medically he is OK and WBC are rising meaning now is the time if he wanted the procedure…he was skeptical at first because a port means being stuck with a needle each time they access it.  The risk of infection and daily life activities (like showers and exercising), however, are made better with a port (anytime you get a PICC line bandage wet it is a trip to UTSW for a 20 minute dressing change, which opens you up to a risk of infection each time…and I can only imagine him sweating in the summer and how many times we would need to go in!).  After some deliberation, he opted to go ahead with a port.  Friday he will go in and be sedated for the procedure so he has time to heal a little before restarting chemo next week.  And yes, things are going according to plan…he will readmit for chemo cocktail B on Tuesday the 11^th.  I am absolutely giddy lately about his progress and so hopeful for the rest of treatment.

I sat in the clinic exam room yesterday, light pouring in from the open blinds, looking at him, sitting upright on the table, like there was never a time he couldn’t.  Everyone says “I don’t even recognize you Mr. Clark!”  He doesn’t smile, he is just quiet.  I ask him what he is thinking and he says, “I don’t want to do this, but I have to.”

Wil and I are at very different places right now with this process.  Some of it is because we are very different people at the core with how we respond to stress.  Part of it is our different roles in this journey and that I have been conscious 6 weeks more of this road then he has been.  And I’m not in his shoes.  He is cognitively ALL back now (as many of you have noticed he is back on line and on Facebook now!).  He is just beginning to sort through what the last few months have meant, taking treatment day by day. 

I struggle with how to ask my long-time partner, who also has cancer, to consider sharing himself and his feelings with me.  I can only project what I think he might be going through.  I ask and he is mostly says he is OK.  He has never been a big talker, but he’s more quiet than usual lately.  How do you give someone you love space without feeling shut out?  It’s a difficult thing for this extrovert to wrap my heart around.  He says “this is who I am,” which to some extent is true, but I am used to the serious side of him in smaller doses rather than it being the norm.  I wish I knew what was going on in that head of his.

One year ago today though, life was very usual.  Tonight is the eve of the big change in our life. 

Wil was working a temp job and back in school, having finished his A.A. in December 2012.  I was working my usual craziness, but floating, head above water.  We had been on vacation in October 2012, but were already thinking about escaping on another cruise in the next year, hoping to see family in the fall, wishing we had more awake hours together.  I had thought, if we can just make it through the next 3 years until Wil graduates with his BA in Math and can start teaching…if, then…I could quit a job, be home more, be more financially secure, and be…happier.  My heart’s true desires…more time, more stability, more Wil.

March 6, 2013, we would wake up, and both get ready for work.  Wil would leave first, having a longer commute.  But by the time I would get to work around 8:30am, I would get the call. 

“Jen, I don’t know what is wrong, my chest hurts.  I can’t sit or stand or breathe.  I am at the doctor’s office.  I’m scared.” 

I rushed off, not knowing what to expect.  They had thought he was maybe having a mild heart attack since the pain was radiating all around his chest area.  A day of tests later and follow-ups scheduled, we were told it looked like he fractured his T6 and were sent to a spine ortho doctor.  That doctor visit would be the first one we would hear, “I’m sorry, but you have cancer.”  Only to have biopsies for months not confirming anything.  We would have many cancer scares followed by celebrations of “inconclusive.”   

A year ago today…That life seems miles ago. 

 “Darkness cannot drive out darkness: only light can do that.”  MLK Jr

So many times I have asked myself, since March 6, 2013, “what if this is it?  What if this is all we have left?” and feeling all the emotions that come with it.  I had my plans…3 more years until happier!  3 more years until the life of our dreams!  Growing old with the love of my life.

The first things people say to you are, “have faith,” “there is light at the end of the tunnel,” and so forth.  I always struggled with these well intentioned statements because they felt exclusive.  Maybe because I grew up thinking that to have faith is to be happy, content, without doubt.  To love means to not be discouraged or scared.  Maybe these lines feel that way because it is people’s way of not dealing with their own darkness when faced with the idea of death. 

I have had an array of uncomfortable and conflicting feelings and still do.  At every turn we are left with wonder.  And in fact, there are no guarantees, so this life, as is, imperfect, could actually be it…but that was true before I had the reminder of mortality.  I consider myself to be full of light and it has helped me make it through a year of dark questions.  Our emotional life is three dimensional and in living colors, the dark shades are just deeper places.

Light, in all its mystery, is all inclusive.  It serves a dual role, as both particle and wave. White light embodies all colors, it’s darkness that excludes and minimizes.  Light is ALL, not the absence of, not just one shade of experience… In the emotional kaleidoscope of cancer world, present feelings, like ever changing bits of light, of color in my scope, turning round and round with new medleys and designs, moment by moment… The many hues of human experience don’t contradict the depth of my love or faith, because like light, my joy is inclusive too.  Isn’t that the mysterious and amazing thing about it all? 

So what if today is all there is?  If living with cancer is what is left?  My hope is for years and years more with Wil.  But if this life, and this light, and our love is what is left…I’m already living the happier, right here, right now.  I’m living in an inclusive light and that, even with uncertainty and doubt, it’s why there is joy.  The light does drive out darkness.  I was waiting on joy and light, now I know it’s been there all along. 

Yucca Blooms

Jenny here.  It’s been a medically uneventful week!  Wil went back to the clinic on Friday for a follow up, as well as another dose of a cancer fighting chemo vixen by the name of Vincristine.  Good news:  Wil’s little liver is looking good and numbers are great!  His WBC is still dropping, but all within normal expectations.  He is achy and tired, but has not had any nausea for several days.  And this week was the first week since October that he did not lose weight (I guess my cooking is too good J).  He is back on oral steroids for a few days, as this is a common compliment drug to the chemo.  What this means?  He’s not sleeping much.  He is up and around, watching TV and even did some laundry and dishes while I was at work this weekend. 

I look at him and his face is relaxed.  He is calm.  He is…home.

Today was the haircut fundraiser.  Wil had to stay home, safe from germs, but I wish he could have been there.  The afternoon was organized by some lovely ladies in our life who raised $600 to help take care of Wil and his variety of medical needs.  You know, money doesn’t buy you love or guarantees.  None of us knows where our journey will take us, or end.  But money these days buys me time with Wil.  It buys me time to take care of him, to attend appointments, to…breathe.  When people ask “how do you do it?” I know they are usually referring to the medical and emotional “stuff” of cancer.  Truth, I look back on days and weeks and months and I wonder right along with you all. This has been the fastest, slow moving journey of my life.

It’s an interesting question.  Given life or death, I think most of us would choose life and take on whatever trajectory that involved.  It’s not easy though, so I’ve come to speak my truth, in response to that question, that we are quite honestly living partially on the kindness and strength of others…and I mean it.  When I took the leap of faith in quitting my third job, which was the best thing I could have done, well, we have been blessed thus far to keep living humbly, with bills still paid.  Two months ago, I looked out at the possibilities and saw no way for it to work…a barren wasteland of emotional tumbleweeds and of prickly stressors.  Drought.

I am a visual person, so I do collages with kids in therapy a lot and, some time ago, I had torn a picture out of a Texas Highways magazine of a beautiful white and purplish flower.  It was strong.  A base of sturdy, pointed sword greenery, and delicate, soft flowers atop.  It took me some time to figure out the name of this exotic plant:  The Yucca. 

If you are not familiar with this flowering plant, it’s quite amazing.  It is a stunning, blooming life, ironically, in the middle of desert terrain.  But this one is not just a looker...it can also serve as food and has medicinal properties.  If you are stranded in a desert, a Yucca can aid in your survival.  Historically they are also called, "Lamparas de Dios" or "the Lamps of God."

A beautiful, tenacious, sustaining, healing light.  Words that describe the Yucca, but more importantly the people we are blessed to have on our side through this journey.

Today, yesterday, and I know in days to come, there seem to be Yuccas blooming every time we find ourselves in need. In my world, in my reality, there is not one set of footprints in the sand along a beach…there is a whole village, an army in the fight, many foot steps through the desert carrying us...our own lamps of God all along the way.  Our very own Yuccas…Much Love