Things We Wish You Knew

Jay and I are both pretty transparent by nature.  We're pretty honest and upfront with people about the way we feel, or the way we think, or just about situations in general.  We're not the kind of people to fall in to obligatory explanations about things. If we don't wanna talk about it, we'll tell you. Over the last few weeks we've both done a lot of soul searching on how this situation makes us feel. We come to the realization that the things people think would bother us, don't.  Last night as we laid in bed we talked about the things we wished people knew about the life of a family with a loved one fighting cancer.  I figured I would share the few things I felt were most important to us at this point.        Don't be afraid to call              We've had a lot of people mention that they didn't wanna bother us with phone calls, text messages, or coming by.  That they felt like they were bothering us...let me just stop you right there.   Jay and I (especially Jay) live for being surrounded by our friends and family.  We enjoy hosting people in our albeit tiny, home.  Jay appreciates, beyond compare the camaraderie felt when he's surrounded by people that care.   He definitely feels the love and support from everyone that has left Facebook comments, texts, voicemails etc.  in times like this.  No one wants to feel alone.   We really don't care if you're super close to us, acquaintances, or people from our past. Not a single caring thought or word has gone unappreciated in our house.      We're not afraid to talk about it         I often have people corner me away from Jay to ask me how things are going. They're embarrassed to ask about the situation in front of him. The conversation, I admit it is awkward.  Who really wants to talk about testicles.  Sick testicles. Surgically removed testicles.  But, testicular cancer is no more awkward to talk about than breast cancer, skin cancer, colon cancer or any other cancer.  If you want to ask, do!  If we don't wanna tell you every detail you're asking about, we won't. But I can guarantee, we aren't easily offended, especially not about this.     Don't get Down               Jay definitely isn't the type of person to let anything get him down.  He's an optimist. I'm a realist, and seeing as where the medical field is where I make my living, I have a hard time only thinking about the positive.  Jay constantly reminds me to just be positive about the whole situation. To believe that treatments aren't going to be too terrible for him. The positivity everyone has shared with us has changed the air for us. It's helped us nurture our hope.   We're REALLY bad about not asking for help       A lot of people have asked how they can help, besides not knowing WHAT we need right now, Jay and I are terribly proud people.  We would chew our own arms off before we asked for help.  It's not a great characteristic to have, but we own it.  The help that has been offered to us has been so greatly appreciated.  Don't think because we haven't asked for help, that we're against receiving it, we just struggle with asking.  This entire situation has been extremely humbling for both of us.  We're both used to being able to help other people out. To be supportive in everyone else's time of need so we're learning to walk before we run when it comes to being on the other side of things.          We really can't make plans        When we were leaving the ER the Friday night that they found Jay's mass, he asked me about cancelling a trip we had just booked to Mexico, sans kids, to watch one of his best friends get married.  I immediately lost it.  These might have been the first words we spoke after they told us what they found, or maybe it's the first thing that I was aware enough to hear, either way it was enough to shake me up. I immediately started bawling/yelling at jay to NOT talk to me about anything past Monday morning because my mind couldn't process anything beyond that part of our future.  What do you do in that situation?! Cancel the trip because of skyrocketing medical bills and the uncertainty of possibly not being able to make it, or hold onto the hope that you're both going to be able to enjoy that trip and make precious memories with people that mean so much to you. (PS, we still aren't sure what the right answer is to that question). Anyone that knows me, knows I plan my life months, hell, even years in advance.  Anyone that knows Jay, knows he doesn't plan for anything.  We are learning to balance each other out right now.  Making a decision on how to RSVP to weddings next month makes me crazy, because I don't know how he'll react to chemo, or when I'll be able to work in order to get him to his chemo appointments and take care of him and the kids and juggle normal life. I hate telling people we'll be somewhere if we can't.  My planner is covered in appointments for our family, with Jay needing to be at the doctor or the chemo clinic anywhere from 1-5 days a week.  If we can't give you an answer on our attendance to functions, just know we're trying. That we're facing the harsh reality of major uncertainty in every second of our daily lives. Though we seem to have it together most days, that's not always the case      I know that everyone doubts that Jay ever has a weak or vulnerable moment, trust me I don't believe it myself most of the time, but he's not always that way.  I guess that's the bittersweet part of all of this, even in this mess we share some completely intimate moments between ourselves that no one else gets to be a part of.  I on the other hand cry almost anytime someone speaks to me.   Don't take it personally, don't avoid me because of it, it's normal- at least for me.  I'm a crier. I cried when his friends packed our house with groceries, I cried when we were in the ER.   I cried when they took him back to surgery.  I cry because we're driving the boys to school and there's a song on the radio that even remotely speaks to me.   We stand in the hallways and talk to people at school with all the confidence in the world.  We hug our friends at church with smiles on our faces and assuredly talk about the treatment plan and our timeline. Don't get me wrong, we're hopeful, and we're faithful, but to say that we aren't EVER fearful would be a total lie.    Do we know our God has his hand on us? yes.  Do we know he has plans for our family? Yes.  Do we know what that plan is? No.  And that's the scary thing.  God uses all situations for his glory, even ones that don't turn out the way WE want, and yes he brings good from all suffering, but we're only human, and sometimes the fear is still there.  But it's not there without prayerful faith.     It seems as if in just a short time, everything has changed for us, and in a sense, it has.  I'm sure in 6 months, so much more will have changed, and will continue to change for years to come. We may not ever feel this way again about this situation, but maybe someone else will, and maybe they'll need the reminder that it's ok to not have all the answers or the "right" attitude about it all the time.  No matter what happens, we'll look back on these first few weeks with bittersweet memories.  Memories that we overcame the situation dealt to us, that we came our better, stronger, and more compassionate.

The Diagnosis: The "C" Word

.   What a whirlwind.   A week go, this very moment I was sitting in urgent care with Jay- my husband- waiting on the doc to come in and tell us he had an inguinal hernia and that he'd be out of work for 2-3 weeks.   I was mad at him for over-exerting himself at work, for not asking for help to prevent the injury.  I was exhausted, holding our beautiful 3 week old baby girl, but I was grumpy, annoyed and I was inconvenienced that our boys were with my parents, probably driving them crazy, and being a handful.   The doctor came in, and sent us to the ER- Jay needed an ultrasound, immediately and it was 9pm on a Friday night, where else was he going to get one?   We got the the ER, we were just ready to get answers, preferably answers that it was just an injury  and not a hernia and that we were going to be able to resume our normal life soon.  The staff got Jay's orders processed quickly.  They came in to do the ultrasound and they brought for him back to Maggie and I. Still no real worry behind the possibility of him being out of work for a couple of weeks.  Then, I saw the look of our ER doc's face and I knew something wasn't right.  A solemn, tall women whom I've known in the work place to be relatively easy going, was no longer cheerful.  She Started explaining to us that they found a mass, a 4cm x4cm mass, and my heart broke.   Being a Nurse means seeing past a lot of the layman terms, the basic blanketed statements of what it might be.  You expect the worst, you hope for the best.  A mass, in a 29 year old male, is the worst you expect.  She explained that she had already contacted the urologist on call and that he wanted to see Jay first thing Monday morning. She explained to us that this appointment was important, it should not be taken lightly and that he NEEDED to make sure he was present at the appointment.  The worst.   She had just kept adding to the worst I was expecting.  This was the first time I lost it.  I held my sweet Maggie and dreaded hearing another word from that doctor.  From any doctor.  I wept and I was angry, and I just wanted to go get my boys and hug them and go to sleep. I wanted to rewind my life and go back to the 12 hours prior. When jay and I were eating nachos in the kitchen, preparing to go snuggle up and go to sleep.

    The entire weekend was a mess.  I cried non-stop.  Couldn't sleep.  Was on edge with a jay, and the boys, and I couldn't eat. Jay was trying to stay positive, and I was just trying to stay sane.   Monday morning my sister stayed with the boys while Jay and I tried our best to get out of the house while trying to look like we had our lives together.  The urologist sat us down, and told us exactly what I had expected.  There was in fact a mass, one that needed to be removed immediately, and the chances of it being cancerous were extremely high.   My face must have gone white, because as soon as he said that dreaded "C" word, he paused to remind me that I needed to hear him out instead of shutting down at the mention of the word "Cancer".  I kindly explained to him that I was a nurse, I expected this much, but that it was the first time anyone had really said it out loud to me.  We scheduled the surgery, and then he asked us which Oncologist we would choose out of the two available to us.   I, being the control freak I am, immediately answered for a Jay.  I wanted him to have the best.  I was going to be in charge of building the best medical team I could for my best friend.  The father of my children, my husband, he deserved the best.  We spent the rest of the afternoon at the clinic. Jay got labs drawn, a CT, and a chest x-ray.  I sat and waited, and tried to keep our families in the loop, and tried to hold it all together.

     We spent the rest of the day preparing for Jay's surgery.  The boys went to my mom's,  Jay went to be relatively early, and I stress cleaned the house with the help of my best friend and a half a bottle of wine to prepare for the company I was cautiously expecting.   Even when your life is falling apart, you have to be a good hostess.  We were up at 3:45 that morning and ready for the surgery.  A total left orichectomy.  The nurse in me worried about body image issues, the effects of anesthesia, and a million other things.  Jay, was just ready to have a reduction in the pain he'd been in all weekend.   We got checked in, situated for the procedure and the waiting game started. Luckily we were in good company.  Jay's mom and dad, aunt and uncle, Grandma, and two of his friends from work were there with us.  We all prayed with some of his surgery staff before his procedure and then I stood there in tears as they rolled my entire life out the door to surgery.  Luckily having lots of company helped me not over stress during the procedure.  His surgeon finally came in to talk to me and updated me the best he could.  They sent the mass to pathology, we would know something by the end of the week, possible lymph node involvement.  Cancer.  Once we got him back from surgery, they got us our discharge papers.  I got him home, and Jacob and John went and grabbed us lunch.  I have never been so thankful for Jay's friends being in my house.  The comic relief, the reminder that I needed to eat, the distraction of being a good hostesss, and to top it all off they filled our house with groceries. To say I was in tears with humility and thankfulness is an understatement. When everyone left that day, my heart broke again. The worst.  I was back to expecting the worst, hoping for the best.  The rest of the week was a blur.  Exhaustion, pain pills, caring for the patient I love the most, and trying to keep it all together.

     Friday was the appointment with the oncologist.  Labs, more tests, and the reality that we had to go to the oncologist.  My husband now has an oncologist.  A cancer doctor.  I sat in the waiting room with him, with families that were further along in the journey than us.  I held his hand, expected the worst, hoped for the best.  The appointment went better than expected- it wasn't  the worst news, but it was still devastating.  A confirmation of stage 2 testicular cancer.  Possible lymph node involvement.   A scheduled pulmonary function test, a PET scan, 2-4 rounds of chemo.   It all seemed like so much to take in, and at the same time I was relieved to have a plan. Jay seemed confident, collected, and calm.  He said always the level headed one.  Sometimes i hate that he's so strong.  I feel like he feels like he has to be strong for me. That I'm a wreck and he needs to keep it together for for th eboth of us.  In the matter of 7 days our entire life had been flipped upside down.

    I'm sure this seems like a super intimate situation to share, but I want to do the best I can to make sense of this journey. To remember where we started,  to be able to share the triumph of my husband becoming a cancer survivor.  I want to be able to be of some inspiration to another sweet family that faces this scary situation someday. I want to be transparent and real.  To share an insiders view of what the process really looks like from the inside. From this new awful club we have to be a part of , because all I wanted was for someone to give me some insight.   I hope our journey will encourage others  and I hope that it'll remind people to pray for my best friend as he walks down this crazy road.