Forward

Jenny here.

Last week was a tough week for me emotionally. Physically, each round of chemo seems to wreck havoc on Wil's body faster now. He continues to tolerate it, but his body is more worn down each time, resulting in greater muscle aches, fatigue, loss of appetite, and headaches. It's not constant, but it is daily, and watching it happen is emotionally draining for me. He tries to lay off the Tylenol to spare his liver, so we have been using essential oils to help with minor aches and pains. Some days, it does great. Some days just OK. Just like with food, each day the thing that worked before may not work now or will work later. It's not consistent or predictable. He is keeping down food with just mild nausea and so far his temp has only gotten as high as 99.2 once.

On Monday, we went to clinic for his neulasta shot. His WBC was at 4.0. The cut off for normal.  Today, I'd assume he's hit neutropenia by now. We received the final and official report from the BMA--negative. We are on the right track. Fingers crossed. Barring no emergencies, our next appointment is Sunday for vincristine (chemo) at the outpatient clinic. Not having to be at clinic again until Sunday feels lovely and means 2 more mornings this week we can sleep past 6:30am. A nice little blessing.  There is nothing I adore more than extra quiet moments snuggled up next to him.  In those moments I can close my eyes and nothing feels different.

Have you ever had the experience of silently crying out in desperation and the universe, in a sweep of divine intervention, dropping bread crumb clues to lead you to safety?  To the best of my own introspection work, I think I hit a point of resentment last week.  Not for Wil or for being with him through this journey. Not a place of thinking we are above going through something like this...this life provides us all with opportunities to grow. More so, a point of angry boredom coupled with profound grief. An unsettled place of struggling acceptance.

I had just said to Wil recently, "I'm so bored with cancer." Bored of talking about it. Tired of the unknowns...Our whole life seems to revolve around a steady stream of meds, countless visits to UTSW, mountains of paperwork, vital checks at home throughout each day...you get the idea. Even when I take a break with friends or family it's often met with discussing treatment. I fall easily in to it because 1. I sometimes really need a place to talk about it (and so do others) and 2. Most of my waking hours involve caregiving or planning around caregiving/treatments.

So my growing resentment, instead, involved the fact that we had fun plans. Good plans. To be helpful people.  To be financially stable and in careers and having a family. All wonderful, simple things most people want.

We had a dream for our life together that we had built over 13 years of marriage.

For the past year we have felt held captive to a fate we don't even recognize, forced to grieve a life we never even attained. You know, in all logic, that a health issue can pop up at any time for any of us. Something terrifying can be just around the corner. Life, much of it, from the day we are born, involves pain.  We come into this world through pain and often leave in pain. In between, in the middle.  Guess what...pain is inevitable.

I know this, yet this is not how I envisioned my 30's. We have been holding it together, but trying to work through this has made me weary and resentful at times.  I had been brooding over this in my head for a few days...the pain, the resentment, and trying to muscle through both. I like to "do" and get things done (and so I am often given situations in which I just need to "be").

Then, Tuesday night, I was on a teleconference for caregivers with a life coach, Tambre Leighn.  I had heard the info being given before...professionally, I've given similar advice, many times over, to clients.  Sitting there, though, in my dimly lit office with hot tea, I quietly listened to others say the same word I've been wrestling with...resentment.  I stayed on mute, not saying a word, and just cried. Maybe I'm not so crazy. Maybe I'm I'm experiencing exactly what I need to at this time. I just feel this uncomfortable stirring at my core these days. I'm unsettled. And even if it is good for me I don't like it, quite honestly!

Part way through, Tambre told about her own journey with her husband. I really don't remember much of it, to tell you the truth. My mind was wandering, still mulling over the past 48 hours of little messages, from multiple sources, that had been strung together, as if to tell me, "it's ok to make plans, to keep moving forward, to not put life on hold for cancer."

So what I heard, wrote down, and mediated on the rest of the night were two words:  Moving Forward.

My new favorite quote for awhile has been: "The price of our vitality is the sum of all our fears."  David Whyte

I had gotten caught in fear.  I've been maintaining, holding steady. But not moving much. Fear can be a powerful spring board if used to push us toward new growth. It can also keep us just surviving.

Instead of holding to "this is not the right time to ___," should I embrace the possibility that right now, in the middle of all that is going on, may in fact be THE IDEAL time to take positive risks?  A time to get better at taking care of me? To dream even bigger?  To expand my life, my business, harness creativity, pursue new interests, strengthen relationships, redefine myself?  Is that even a "responsible" choice considering all the unknowns?

People say, cancer doesn't define you. They want to wipe our tears and take away the agony. I love them for that, I feel the warmth and care in that intention.

But the pain, the struggle...it does change us.  It's supposed to change us. It should redefine us in the way of a personal awakening in the midst of the drama.  Maybe that's the secret to making it through no matter what the outcome? And that opening ourselves to a passionate new path is what will really save us in the end.  There is no path around this if we want vitality.

What do I have to lose?  There are many years of ahead.  Life is now, and forever, coupled with the added element of cancer.  At the end of the day, all we need, is the surround of loved ones who will hold our hands as we go through the pain...for the courage to endure the discomforts and struggle...to not avoid pain and live smaller than this situation has offered.

So this week, I've started to take risks and envision a future that can stand on its own, with or without cancer.  I'm already a different person now with developing needs/interests.  I have a career and hubby I love. But our lives suddenly feel so different and my inner compass is no longer pointing in the same direction, knowing this diagnosis is bigger than us and that maybe, just maybe, it will mean something more than we had planned all along.

The threat of cancer no longer exists because we are already living in its daily presence. And it makes other risks, suddenly, seem so very small.

Reality Fights

Jenny here. Gosh, I apologize for it being over a week without a significant update. We have both been posting on our Facebook community page with small updates. So,we hope you've been able to check out little happenings on there.

Wil is currently in the hospital, having been admitted for his chemo on Wednesday. As I sit here waiting on rounds, he is more than halfway done with round 2A and hopefully will discharge on Sunday or Monday, depending on counts.

What is better than that?  This:  Wil is...back. Positive, thoughtful, involved Wil is here now, asking questions, taking charge of his own treatment, learning to give himself insulin during his steroid induced high glucose days, inquiring about his cancer, alert, thinking about school. On Wednesday night, after he admitted, both nurses and I noticed his blood pressure was pretty good (compared to previous admits where it was sky high and he was anxious) and he seemed...calm. Quietly ok (that's equivalent to my dramatic super happy for my shy, sweet, naturally overly serious guy).

I mentioned it to him. "You seem different today."

In his Wil way, slow to speak, quiet, matter of fact confidence, he said, "I think I'm accepting this now."   Just like that, overnight, his mood and outlook has changed.

And then there's me. His polar opposite. Normally louder, less serious, pushy, fast paced, easily distracted. This is the moment I've been praying for for him. I don't how you fully accept a disease you intend to eradicate as quickly as possible. But that moment of surrender to what this moment is and is not...for the cloud to lift. I've been hoping for that. So I could take a rest and not have to carry the positivity load.

You can't push a mountain, and in my 14 years of loving Wil, I've long learned to give him space. Wil needs time and there is no rush. He won't have it and it won't create motion more quickly if you do. He has taught me so much about stillness. (I'm a better therapist and person because of him).

Sometimes our innate differences means I forge ahead on issues in our life looking more OK and optimistic than my partner in crime. I guess the cat is out of the bag now on that one because of this blog!!  I am so thankful, though, that in a good companionship like ours, we can take turns at emotional states, because while Wil has had a transformational week in his journey, full of acceptance, hope, and promise, I've been fighting with reality...a lot.   Feeling heavy hearted amidst all the hope I still hold onto.

I move in and out of despair and cheer, from sorrow to trust in what will come. The reality is, he can beat this. The reality is, he might not. Oh reality, you complicated, fickle thing.

Here's a Readers Digest condensed version of my week:

Last Friday I was flying high from his clinic appointment. His counts were good.  So good we could think about going out in a public place (gasp) with some precautions (mask, avoid crowds, take your own snacks, etc).

Saturday I felt the courage to look more into finding other people online with ALL (with no real luck).  Of course when he was first diagnosed I was all over the internet looking up facts and info about ALL.  Through the storm I had no time for any more research. And Wil has been an outlier so most of it was not very true to our story at the time anyway.  I felt empowered last Saturday so I got back online. I was left in awe that in 2013 Wil was one of approximately 2070 adults diagnosed with ALL in the U.S.  It's funny how that medical info makes more sense now because we are surrounded by it daily now. But, 2070 people out of the 315 million people in our country?  His nurse said she knows of just a few treated last year at UTSW (AML is the more common one...also the one ALL can turn into, if cancer comes back).  40% of adults beat it. That means over half don't. What?  I hate that. But Wil is my outlier. I pray he continues to not be the norm. Because the 6 out of 10...well, I'm not prepared to wrap my heart up in that reality. Yet there is no denying that we are just two people. He is one of 2070. With blood cancer you are chasing a moving object. It's out of sight but the journey continues. Most people reach remission. It's holding on to it...8 years to feel like you beat the odds....praying he won't be one of the 1000 plus adults that also lose the battle each year, that is what is absolutely daunting to think about.

Side-note: I read somewhere that about 750 people a year are struck by lightning. His odds of ALL?  Not too different.  Full of wonder. Full of questions. Yet feeling like maybe our life together is meant for more than what we could have planned...That this lightning strike might mean something bigger for us in this little ol' life.

Sunday we took my sisters kids to see a movie. Their faces light up around their "Unkie."  All of Wil's germ worries seem to melt and he looked so happy to do something normal. I felt so happy to do something normal. But snuggling there with the kids I had tears streaming down my face. I'm so sad these days that another generation of "Crouch" kids are living through the painful reality of illness. It never escapes me that I was my nieces age when my dad was first really sick. I know I'm over personalizing here. But I remember what that looked like to see my dad sick and in the hospital. I remember what it felt like. I wish I could bubble wrap them up and protect them from having to know this reality at such an early age...that people they love are not spared from heartache. That life can be scary. Guilty for dragging them along this rocky road. But grateful they are here all the same.

Monday Wil had a BMA (bone marrow aspiration or biopsy). Literally, there is a long hollow drill bit that they use to drill into his hip bone to get fluid and tissue to biopsy. Under just some numbing agents, Wil laid on his stomach while I watched them use an orange drill, similar to something I'd use at home to hang curtain rods, to drill in 6 inches.  Flesh, numb. Bone, however, has no way of being numbed. I sat there amazed, listening to the whirring and seeing him hit the bed repeatedly to help push through.  I find medical stuff interesting (I'm the person who ASKS to watch my own wisdom tooth extraction in college), yet I tensed and was sick to my stomach, knowing this would be one of many BMA's in the next 8 years, hating to see him have to endure it.

Tuesday I was deleting old voicemails while lying in bed with Wil, binge watching Mad Men. I played an early January voicemail from him. The only words that we're understandable were "I need help."  The rest, you could hear the pain, but you not make out. With a teary look Wil asked what it was he was hearing. At the time he was so frustrated that we couldn't understand him.  He had no idea how he had sounded. Or how hard it was to get 20 of those a day and not be able to do anything about it.  "Why do you keep those?" he asked. Artifacts...from a time I won't forget. Milestones for how amazing he is doing now. Things could be worse. They already were not too long ago. Pain and happy all at once.

Wednesday night, talking with a dear friend who stopped by the hospital, the realities of hoping for a family of our own really hit me. When you have such a long journey ahead, when do make a responsible decision about even trying for that?  And even adoption. You have to be years down the road and have proven health to be considered. It all seems so...unattainable if I really think about logistics and our age. 8 years. 3 for treatment. 5 more holding your breath that nothing else pops up. ALL, you insidious bastard, likes to play hide and go seek as well as morph into new blood cancers.  What are your plans for the next 8 years?  Still tough to wrap our heads around.

Daily fights with various realities. That's been my week. Can you feel the twists and turns, the curious emotional layers, of this roller-coaster?


**Disclaimer and alert:  I am going to use a certain word with caution in the next paragraph. Wil and I even talked about not using it at all.  We ask everyone to be silently thankful and respectful of where we are at in our process...because this is a complicated word and carries with it some powerful feelings. Please continue to send your love and optimism, but take a moment to think about how this word is multidimensional...a complicated duality we feel from this one little word. A word that is good, yes. But a word, a place in treatment that isn't necessarily static.  A word that in Wil's diagnosis and treatment is the first step toward vitality, not a last step. I guess what we are trying to ask is for folks to reframe from rolling out the red carpets and popping the champaign. But rather, to have a quiet thankfulness for just this moment. Free from expectations and goals.

So the big news of the week is that the preliminary results of the BMA fluid they took on Monday is that there is no detectable cancer now. "Remission."

I share this with hope and with gratitude to his treatment team.  The Jenny B.C. would have heard the "R" word and celebrated in a loud way.  "Congrats". "You did it."  "It's a miracle." Sighs of relief. It's different living through it.

The reality is with any cancer, but especially blood cancers, remission can come more easily than an all out "win."  The doctors say "there is no cancer detected now. But we know it's still there. So now we keep going in this direction."  They are not being negative, and I hope everyone can understand we aren't either. We have reached the end of mile marker 3 of a marathon run.  No noise makers and hats. Just...calm focus.

Early on, at the starting gunshot, we needed the cheers. We have needed love and received it and are still standing!!  We are off to a good start. We will accept as many "amens" as we can get!!  We will continue to need you even more in all the years to follow as we learn to live with cancer. As we pass this first segment of treatment (hopefully by fall), as we transition to the next one in year two, and then the year after that, and then to starting a new post-treatment life in 3 years from now with periodic checks and, hopefully, into that post 5 year sigh of relief.  Because that IS our reality. 8 years, at least, until we can say we beat the odds.  We are still in it, in the mental/emotional/physical battle portion. We are ok. We will need you even more toward mile 20.

I don't know if you remember that blog back when Wil first came home from the SNF. When he told me his new life basically would always include cancer. Remission doesn't mean your body returns to a state of B.C.  It certainly doesn't mean you ever emotionally come back to where you started out. Matter of fact. People find it sad. He's so smart. I only feel inspiration when I hear his words.

We will work to not live in fear, but the reality is that cancer is just part of our forever story now. Like it or not.  The miracle is in the middle, not the end. Wil is determined now. We focus on moments these days rather than long range goals when possible. There is no time to party it up, the fight has just begun. But yet not without profound enjoyment in little things. I used to see Wil less hours in a week than I do in some 24 hour periods now!  At the core of it, I now have all I ever really wanted.

Anything can happen. Anything. We haven't been promised an easy ride in this life. Just that we are not alone. Any of the possible realities is no match for the company you keep on the trip.

So here's where we are at and what we celebrate without asterisks:  He's tolerating the chemo.  It seems to be working. We are blessed. The love in our life seems to multiply faster than our hearts can keep up. And why we ask you all to live with us in these singular moments, to be with us in the stillness.  To be with us in all the forms that reality can take.

We fight reality a lot. We fight the tears. I internally try to prepare to be OK for whatever outcome whilst enjoying the ride, laughing, increasing my heart space for it all...continuing to fiercely love the only person I can't imagine a life without. I fight the darkness. I fight the urge to just be blindly optimistic because I know...I know in my soul that embracing all of what comes IS what this is all about, even if it doesn't fit the reality I *want* for our life.  Fighting to embrace new realities, learning to let go of old ones. And that is ok.

[ready for you all to insert a sea of Amens]

For reasons yet unseen, this is not for nothing. Much love my friends.

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