Alternate Endings

As a child growing up in the 1980's I, like many others my age, fell in love with reading.  Not because of school reading programs.  No, it was for a series of books called "Choose Your Own Adventure."  There was something magical about being the explorer in foreign pursuits or lands, knowing that in several pages you would need to make critical decisions and turn to the correlating pages that went with it. You could read the same book over and over and get a different ending each time. Your trajectory as the hero or heroine was not your friend's...it was all yours. Some choices made for victorious last pages and some...well, not so victorious.

I've thought about these books many times throughout my young cancer caregiver journey.  How the options we choose lead us to the next and the next and the next outcome.  Only, in the world of medicine, and art of oncology, the whole team of experts is along for the ride and making their guesses at what is best case scenario for my most loved person in the whole world.  Sure, we sign the consents. I look back on choices we have had to make...ones that led to complications or other impossible options that no one could have anticipated. Yet, in my heart, I would have made them again because at that moment it was all I could do with the time, emotion, and money I had to offer.

At age 36 I never thought I would have to put my husband, functional and wonderful before leukemia, in a nursing home, decide if there was hope for biological children, feed him, bathe him, watch him relearn to speak, haul around a wheelchair and walker, watch him struggle and want to die, wipe tears, among so many more things. Although caregiving has continued to transition as he regained skills, those days of diaper changes and lonely, sleepless nights, while his body was so toxic and he was psychotic, stay with a person. Just the other day at work, a coworker took a call from a person having to make decisions about a parent. It all came flooding back. Memories stick to me like glue as I navigate the duality in my life as it is for the time:  both a caregiver and wife...Advocate and friend.

It all makes me a crazy, ferocious, mama bear. And I make no apologies for fighting for him every inch of the way, even if unpopular. I will stand in the arena alone fighting if I have too. When I see him cry at clinic and tell the nurse he is thankful for me fighting, I know I've loved and lived to my fullest. No matter how uncomfortable it makes anyone else.

As a caregiver I am tired and task oriented. As a wife, I walk around with multiple alternate endings on my heart every day, just like those books.  I try to use reason and logic to help my husband make treatment and lifestyle elections that will hopefully give him the best verdict long term and in my battle to preserve our dreams. I sometimes think about life only in 3 days stretches, in terms of appointments and medications. I also think about life and what it may or may not look like in 365 days from today or in 5 or 15 years (the big mile markers for follow up). I think about how to function on 4 hours sleep and popcorn and diet coke on the bad days. I also think about death and how to survive a life without him, knowing the odds are against us but unable to truly imagine a house without him in it.  I forget he thinks about me too, now worried if I don't answer my phone because losing me, on top of cancer and wondering how he'd survive, is just as scary for him as it is for me.  We talk about plans and options in the event I die before him.  I think about the hope of good labs and maybe even a nap for me before working the night shift at work. I think about recovery and the new life that could spring forth from the ashes of the forest fire.  And everything in between.

The difference between my childhood choosings, in those fantasy reads, and nitty gritty, sobbing one moment, elation the next--the crazy life adventure that is happening now, is this:  there is no going back and getting another crack at the drama...and the story is dependent on so many people.  I can't leave the scene whenever it's grown too intense.  Others feel our stress for sure. But the story is every moment for us and we can't ignore it, take weeks to make decisions, or run off. I'm not saying I want people to stop living. Goodness, go out and live to the fullest!  Take every opportunity to live your best and love wide open. Be courageous in your choices. That's the exact thing we are trying to do.

Side note:  Yet the mama bear in me is so grow-lie these past weeks because I don't get a break from cancer and when people let my hubby down, don't call him, make decisions that affect him when he is already weakened, it tears me apart too.  And it's hard to wrap my heart around. The people drama of this journey will be the true scars that remain when it's all said and done. Whatever the outcome.

I've carried a fair amount of criticism on my shoulders lately for my feelings along the way, for being open about this process, from people so close that it hurts extra deep. If you are looking for a happy and calm mama bear from me, I can only assume you haven't had to walk and stand in the reality of death everyday. There is no one right way to undertake such a perilous, wonderful path.  No one way to feel or be or breathe. And at the end of this I will feel nothing but resolve because I know, in my heart, I have loved fiercely in spite of the doubts, fear, anger, hope, and questions. I never knew love or faith in such a raw way until cancer. And those two pieces to whatever ending we find, is what I hold to tightly.

To those that have said to me "just have faith:" lean in a little closer. You will see we are draped in faith each day. But faith without actions is not a living faith. Wil says he is living in faith every moment.  But it's not blind...he is fighting like hell alongside the prayer. We believe God calls us to do our part and surround ourselves with human healing hands that are divinely guided. Faith doesn't have to be passive to be true.

Thank you so terribly much to those people in our lives that "get it."  We nourish our souls on your kindness, strengthen ourselves through your encouragement. You are unsung heroes. Some day when I have energy and time, you will hear from me personally how much it meant. Just know it's not taken for granted.  As much as this life can sting, our supporters bandage us up every time so we can keep going.

The updates:
It's been a physically and emotionally draining two weeks for Wil's recovery and transplant planning.  3B recovery has been the worst. Hours and hours of blood transfusions to keep him going and platelets to keep him from bleeding it out!  His body is just more tired these days.  His DVT in his leg is slowing getting better but could take months to resolve. The swelling makes it hard to walk well, painful with each step still.

We've accepted the clinical trial, a family donor has been identified and accepted, and now we wait. Wil will have another bone marrow biopsy on Thursday afternoon to make sure the cancer is still controlled and he is ready for transplant. The insurance needs to sign off on their portion. The donor needs to get here and pass all the preliminary tests. We are aiming for the trial to start July 17th.

And then we will wait some more as the stem cells are frozen, sent away for 16 days to a lab, and manipulated to have a retrovirus attached (deactivated). Once those cells return back to UTSW, Wil will have the most intense round of chemo yet, along with radiation, to completely kill his immune system, leaving his body a clean slate for healthy cells to be transfused into him and hopefully grow (mid-August).

The coming 100 days post transplant will be the nail biters...as we wait and see if his body rejects the cells (called graph vs host disease or GvHD). This is all too common and also potentially life threatening. But here's the cool thing about this trial--those lab T cells with the retrovirus, should they get out of hand and attack Wil's tissues, the research drug can be used to activate a suicide switch and destroy only the cells causing issues, leaving the rest of his immune system alone. How cool is that?  Scary exciting. It could save his life. And help change the options for treatment for others in the future.

Because the process is going to take a few weeks to get going, Wil may need another round of chemo before the transplant round. Thursday's biopsy results and his doctor will decide. We want him as strong as possible for his month in the hospital during transplant. Yet we can't let the leukemia cells take off again. Such a balance.

So we wait while we continue to choose life at every page turn and in every way we can. We hope that we have picked well. Who doesn't want "victory?"  More than anything I've ever wanted, prolonging my life with Wil is my dream ending.  But it's knowing that the dragons slayed along the way, the leaning into our fears to take passionate steps out into the darkness, to loving the questions and truly liking the warrior within that is emerging...that is what makes us each the hero to our own stories, no matter what that last page will read.

Exposed

Jenny here.

First the updates.  Wil is half way through his 2B round of Hyper CVAD treatment (a type of chemo protocol). Bags are being changed, monitors beeping, and he is soundly asleep as I type. In a few weeks, if all continues to move right along this path, we will be half way through the consolidation portion of treatment (4 more inpatient rounds for sure)!  He is in such good spirits. I am in such good spirits. I want to breathe it all in.  I hug him tighter these days. Is that possible?  My *imperfect* love for him is more expansive than I could imagine.  He feels so tall again, upright, better balance, doing laundry and dishes on his good days.  I sometimes come home from work and find more eggs have been purchased or his prescriptions have been picked up. He's independent most of the day and, in most things. I try not to take it for granted.  A day doesn't escape me that I'm not grateful for how far he is come.  We try to not lose sight that not every partnership makes it through a health crisis like this and that a marriage, alongside this cancer journey, still takes work.  We are lucky. We still pray for strength and patience continually.

It's hard being inpatient every 16 days. The time at home goes so incredibly quickly.  With one crappy feeling week and one good week, before you know it, it's time to pack again.  Not to mention the weeks at the hospital are draining with interrupted sleep every hour.  I usually stay most nights.  I'd rather miss sleep than time with him. 

By this point, day number 62 at UTSW (combined total hospital days, from all stays since November), the staff here have seen in me in so many states. Here, at the hospital...at the moments of great heart break, of triumphs, sleepless nights, drooling on my pillow exhaustion, scary hair, random tears at awkward moments, shower optional-ness, sometimes no bra, coming in after 2 a.m. from work, take charge, picture taking fanatic me...here the staff has seen every side of Jenny possible. More, quite frankly, than any of you will ever see!  Sides of me Wil had never seen (and some he will never remember).

Sure, it's hard being here every 16 days, and yet now, we have started to talk about what life will look like without, eventually, being here all the time.  And that feels strange too.  We will miss our little "family." Does that sound like Stockholm Syndrome?  Assimilation to our captors? I know it's their job to care for him.  It's the amount of care, and the caring for me alongside him, that gives us that feeling of home away from actual home.  It is sometimes in the moments of stillness, quiet awareness, that I value them most. I don't know if they have been touched by cancer in their own family, but they certainly seem to understand it. 

I know I have written about it before, but there is some sort of sweet surrender here.  A stripping away of your life beyond this 8th floor, of putting aside the things that don't really matter in the grand scheme of things.  Of letting go, coming undone, finding the essentials. I've been thinking a lot about that feeling here...the professionals who care for us....of being known by, technically, strangers in a deeply personal way.  This is the caring paradigm, I'm just not used to this side of it. 

Do you ever want to share something deeply personal, but fear the outcome if it's said out loud?  Fear the silence that most likely will meet you after sharing profoundly agonizing feelings?  The uncomfortable stares? Here at the hospital, in my varying states of disarray, I cannot hide. You can have any kind of day...the staff have seen it and can read your face.  And they continue to ask if you are OK even as you try to occasionally fake it.

Exposed.

It's the word that keeps coming to mind.  Wil is physically exposed over and over through this process. I find myself emotionally exposed though, as well.  I understand the risks and wonder how putting most of this experience out there, in a public space, in words, could affect my career later?  My relationships?   Will people look at me the same?  Certainly this blog started out as just a communication platform for close friends and family to keep up to date with Wil's treatment.  From his perspective.  I had no idea the the significance it would play in my own personal processing.  

And so life laughs at me, just a little.  And I'm learning to smile back.

I deal daily in other people's vulnerabilities. I am, by trade, a therapist.  I keep my feelings in check, not stored away but moderated, so I can focus on my clients and support them.  I use myself in those therapy encounters.  I love my work. I often say to clients, "we are all on a journey, just a different places," and I  mean it with all of my heart.  I keep boundaries, while also caring with great empathy.  So when it comes to being open myself, to letting my guard down through writing, it feels counter intuitive.

Top Secret: Us therapists are far from perfect.  To continue to better your work practice, you have to be curious and active about our own life practice. We probably spend more time analyzing ourselves than the people we meet outside of work.  I can be my own worst mental enemy!  But I've tried to stay true to my intentions here.  To be open, emotionally bare.  To accept the feelings I would ask my clients to accept in themselves, no matter how terrifying the honesty, at times, can be.  It's all a part of this life thing, right?  The support we have received back has been validating yet, I know, at the center of things I am really just trying to make meaning of events in my own heart.  And it's my own ability to embrace or not embrace my journey that makes all the difference.

I recently found writings from last year.  Angry, brooding.  Dark, gut wrenching. From during the time we were chasing the diagnosis and scared.  Before we had told many people about the what if's and certainly before the blog started.  I had never intended to share it with anyone...not even Wil. It made me nervous.  But last night I read it to him. He is strong enough. He always has been. I'm starting to give him the opportunities to care for me again too.

This is what I know now:  Hiding involves fear, love illuminates.  Directly leaning into and embracing the shadows continues to somehow catch my falls.  I sometimes wonder what will become of this little blog.  I still write it for Wil because I made him that promise. But I'm learning that I've been writing for me too, and in the process of laying down feelings, of my humaness being exposed...the whole gamut of ups and downs...it is has given me freedom to be fully alive and, now, dressed in even greater love.

The following is an excerpt of what I shared with Wil.  A mile marker of once upon a time. Nothing more, nothing less.
-------
Darkness (5/3/13)

"Can you handle my darkness?
I'm not sure where I live anymore.
Somewhere between light and depth.
In slow motion...rewound, fast forward.

"Can you handle the forecast?
The sun most days. Yet followed by shadows.
A despair down pour followed by partly OK.
Oh the crevices of possibilities.
Somewhere between hope...and the fragments I keep glued.

"Can you handle my lack of ability to hold it together for you?
To avoid the egg shells around your comfort?
I'm too tired to care anymore.

"Can I scream its not about you?
I'm lost for the words to convey the abandonment I feel when I think of you.
I'm not sure where I live right now...
But you don't even want a forwarding address to this nightmare.

"Where could my heart reside if it wasn't with his?
If not in this home of everything I've ever needed.
Now, half exposed brick from the pressure cooker.  Home, ignited.
Shadows, broken, carried, draped across my limbs.

"I've been running and running and running and running for a long time.
I wasn't fast enough to escape my worst fears.
Trying. Just trying to not lose more familiar walls to the terror of what is.
Rebuild? Not the question. What materials we are left...Realness."

------
The Jenny who wrote those words in May 2013 was alone and scared, already feeling relationships drifting away.  I could not have known how wonderful and surprising it would be to have unexpected people rise up, fill in the gaps, and to help carry us on. 

Today is different. The revealing of self, the new community that has sprung up while we struggled to find our way...you would think that protecting your life details and feelings LESS during this time would make you more susceptible to heart break.  Yet it's done exactly the opposite. It has opened us. It's been a light to the dark, a light to our path. 

Leukemia, Lymphoma or Bust?

They gathered all the pathology reports from the past and after a full day of study they have final diagnosis and stage.

Acute Lymphoblastic Leukemia!

That's right.  It is the same diagnosis.  It is just that there is light spreading in the bone marrow.  This changes nothing on the treatment plan.  Their approach is a pediatric protocol, mainly because I am as young as I am, which makes my remission rate at 80% (90% for an actual child).  I will be on a 9 to 12 month regime with my first month being completely in house and the most agressive.  I will then be in and out of the hospital for the next 9 to 12 months and not able to work or go to school. Actually life will be changing in so many ways. 

The chemo began that night (Tuesday, 11/19) with 2 of the 5 chemo regimes entering via I.V. (VinChristine & Doxorubilin). They didn't take long to get in the system and man did they rush through my body quick.  One of them were red and,well, an hour later I expelled some red.  I will count that.  I didn't notice anything in terms of side effects although while injecting the chemo they also injected anti-nausea medication.  

Day 2 of treatment I though was going to be quiet because I thought my next 2 chemo does were going to be this friday.  Well no.  One of them was to be on this day (Wednesday, 11/20).  This chemo injection was preceeded with a spinal tap done down in radiology.  The tap went well and the new chemo went in fine, straight into the spine.  This was chemo 3 of the 5 (IT Cytarabine) and I will only have that one once this round (per month).  This first 2 will repeat every Tuesday for the next 4 weeks.

Today (Thursday, 11/21) was my actual quiet day.  Not that I want quiet days, but after some of the things that happend today I kind of needed it.  I experienced my first major side effect, but in a somewhat small form.  I experienced a major heave, but prevented a spew (HEH......Sorry).  I did prevent it with some deep breathing.  I think the lack or change of the taste buds help make the situation happen.  I was very nervous for dinner because after that episode because my head was swimming and my stomach was on stand by.  I ended requesting some anti-nausea medication and proceeded to eat, but very, very slowly.

Tomorrow I will be receiving my 4th chemo dose (4 of 5) this is a new regime (Pegaspargase) and will only be injected once during this cycle via I.V.  

I am pretty anxious, nervous or whatever, but I have to flat out accept what comes to me and act accordingly.  Bucket next to the bed tonight.

Well that pretty much catches us up on this.  The next posts may be a bit more gapped out.  So just continue to look for email notifcations, facebook posts, or just bookmark the site.

The Journey Begins

Hello folks.  Jenny and I, have been smacked hard in the face with one of the worst ailments--one you would never want-- cancer!  This post will be just a brief (maybe) overview of the 8 month process that led me to UT-Southwestern St. Paul University Hospital in Dallas, TX.

Back on March 6, 2013 (I remember that specifically and I think it was a Wednesday), I got up and felt one of those knots that usually tells you that you may have slept wrong on you back or something.  So, I didn't pay it too much of mind, took some tylenol and proceeded to start my day.  Got ready and headed off to work.  As I drove down the road I noticed the pain of the knot (which was actually directly in the middle of my back, which is unusual because knots like this are usually on the side, like the shoulder blade or something) got larger and spread across my back in a straight line all the way around to the front, stopping short of my sternum.  It reached that point when I finally arrived at work and it stayed.  I don't know how I handled that drive, but I did.  I could not work though because after getting out of the car I could not stay in one position without the full pain returning.  So, I was allowed to go to my doctor, who was close to my job, thank goodness, and had him check me out.  I guess I couldn't describe the pain well enough, but after an x-ray and CT he decided to recommend me to an Spine specialist because a mass was found on my T6 vertebrae and it looked like the vertebrae was compressed or something.

So now the next 8 months.  This was the toughest part of the process, for now, the whole 8 months.  Keep track of the positions in the months.  In Late March we finally got in to see the spine specialist and after an MRI it further confirmed the mass and suspicion of Lymphoma was made.  We then were referred to an oncologist to meet and schedule a spinal biopsy (Mid-April).  When we got the results back we were informed that the biposy was compromised and had too little tissue to confirm anything so I went through a full body CT to check the lymph nodes and an ultrasounds to check things like the spleen, arorta, liver, etc.   The ultrasound checked out ok, but the CT showed a few enlarged nodes that recommended a biopsy.  This biopsy (Late May) was done by a Thoracic surgion that seemed a bit smarmy to me, but we dealt with him.  Results showed no signs of cancer in the nodes so, for now, cancer was off the table.  

We were told to return in late August to do another full body CT to recheck the nodes for further enlargement.  It showed the nodes being the same, but the mass on my vertebrae had grown twice in size.  So, let me back track here.  During the summer we returned to the spine specialist and he prescribed physical therapy to help strengthen my back.  Up until this point the pain I was experiencing had all, but subsided, but in July, it came back at 50 to 60% of the force it had before (I think).  Enough to inform the spine surgeon.  They prescribed me steroids and said for me to keep up with the PT.  So I took them and I tried to keep up, but the pain either stayed there or grew.  Back to the oncologist and the CT, we found that mass had doubled in size.  So, around six months later.

The oncologist recommended another MRI (Late September) which confirmed the growth and then referred us to a radiology interventionalist.  We saw the radiologist in Late October and then had another spinal biopsy a week later, got a really good sample this time and it was confirmed that I do have something going on with Lymphoma (November - 8th Month).   Oh, side note, remember when I said that a break happend?   The interventionist informs us that it did not look like the vertebrae or any other part of the back was ever broken.  Just a mass was there that was now spreading around the vertebrae and squeezing the spinal cord, but no break or compression.  When it did press, I knew it.  

So for a week I was stricken with intense pain at home, recovering from the last biopsy when I was experiencing numbness and timbling in my legs and toes.  Now this is something the interventionist was asking me before during the consultation and at that time it was not happening, but it did later.  For some reason I thought it would pass and the following Monday I decided to head back to class.  Walking was different, but doable.  Going up and down the stairs were the trigger.  I had to use railings all the time to maintain balance, but one stairway (wide one) I went up as if it was nothing and all of a sudden my legs decided to cross in front of one another on their own.  I had to stop myself, focus and make each leg move right (this was only on the strairs).  I was on the phone with Jen as well and she convinced me to call the oncologist and inform him of what has happened.  We went from prescribing more s                  teroids, to another doctors visit to, "let's get you to the ER!" in one conversation.  Come to find out that the mass was squeezing so hard that communication was seriously being disrupted.  After being admitted, I saw him one last time where he tells me that we are going to UT-Southwestern and they will take the case over.  This was Jenny's goal all along, but it took a lot a think for the oncologist to go with it, but he did.  

2 days later I am at UTSW - St. Paul.  Let the healing begin!

Sorry.  That was longer that was planned, but I wanted to tell a story I guess.  Hope I didn't bore you.

More posts to come!