Alone..

Driving into Palo Alto towards Stanford yesterday was the first real moment of solitude I have felt so far. Things have been happening so fast there hasn’t been a minute for me to really contemplate being alone. Unless I am fishing or working on the ranch I dont particularly care to be alone, it doesn’t suit me well at all. My life is better when others are around who can laugh and joke about anything and everything. But here I was, alone, looking over at the passenger seat feeling its emptiness while maneuvering through traffic.

Then I thought about how alone my wife feels in all of this. Not in the sense of anyone coming to visit her or sit by her side, but as in alone?  You know, on the inside? As though this thing called Leukemia is somehow her sole cross to bear. We come and go, kiss her forehead, hold her hand, we say all the right things like; honey we are here for you, Jacy we love you, you can beat this awful disease, you are so strong, if anyone can kick cancers ass it’s you! But at the end of the day, when darkness comes and there is nothing but nurses poking, prodding, scanning and taking vitals signs while administering more medication, there is only her, alone, with this disease…

Yesterday was a difficult day for her, vomiting, restless, hurting, hard to swallow, mouth developing sores and constantly needing to pee! She could not get out of bed without an alarm sounding, sleep more than 15 minutes without someone needing to speak with her to reaffirm her name or roll over without being tangled in a spaghetti like mass of I.V. lines!

Her nurse yesterday was amazing! Sweet and kind you can tell she loves her job and the patients in her care.  She was always Johnny on the spot and I wasnt able to do anything for my wife as to do so may have been an insult to this wonderful persons tenacity; regardless though it was a revolving door of activity within the confines of her two person barley 250 square foot room and I dont know how any of them (patients included) handle it all.

I sat with Jacy for 6 hours and was only able to speak with her for a total of about 30 minutes as she would drop in and out of interrupted slumber.  She spoke about her worries in regards to her room-mate for which she has become attached.  She talked a little about hallucinations and talking to her room-mate in her sleep for which she only remembered portions. At one point she went to shower and needed three nurses to assist her back into bed as all of her medications hit her at once causing her to become dizzy and unable to stay upright.

Six hours went by like five minutes, I did nothing, I said very little, I held her hand and stroked her back. I read stories on my phone, looked up the history of Stanford hospital and reoriented myself with the entire facility. At one point during the day it became necessary for me to step outside and stretch my legs; my legs having a mind of their own took me right around the corner into the chapel. Sitting, reflecting, pondering and praying; praying for guidance and praying for Jacy to retain her inner strength.  Staying strong for our family has been challenging and I am sure Jacy feels those same pressures in regards to her children.  Its nothing we havent handled as a team before or wont handle in the future. Having the ability to walk in and find sanctity allowed a moment to breathe a little easier.

Walking back from the chapel my heart-felt lighter, my spirits raised a tad.  It never ceases to amaze me what a little quiet somber prayer time can do for one’s mind and soul.  When I returned she actually stayed awake enough to chat with me for a bit, kiss me a few times, then quietly drift back asleep.  It was all my emotions needed to quell any fears, it was all my heart needed to recharge for the next day. It was all my body needed to lift up my shoulders and carry on a little longer.  A kiss and smile from the one you love is a powerful thing.

If you know my wife, then you know the power of her smile. If you have spoken with my wife then you know she can make a friend out of the most hardened of personalities, and if you have ever been in a room with my wife it is instantly apparent where the light is emanating from.

Even though she has a wonderful room-mate whom she is very thankful for, it is killing me to think of her ever being or feeling alone..

UPDATE: Today she is just as sick, and with only one more dose of the dreaded Cytarabine to go, she will only get worse before getting a little chemotherapy break over the weekend. I dont know how she does it, I am pretty sure I would have screamed uncle! Then quit.

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Promises

I don’t care who you are or how strong your resilience, when closing a door behind you to a hospital room within a Cancer/Leukemia ward holding the most precious of beings in your life! You cannot help but feel as though things are now permanently out of your control.

And you would be correct, for they are…

Three days ago Jacy and I got into our car. We had a relatively uneventful trip into the bay area, over two bridges, through San Francisco into beautiful Woodside ending on the famous Stanford campus. 19 months, 6 of those in treatment then remission and relapse all leading up to this moment. I cannot describe adequately to what end my brain continues to function. This moment, this very moment, where all I cherish is left in the skilled hands of others. Like knowing your final day on this planet, or being 18 and not quite comprehending that yes you too will one day be 50 then blinking only to recognize that day is tomorrow. It is more than I can handle.

13 years ago I promised to always take care of her, in sickness and in health, for better or for worse; to never leave her side no matter what. I am many things in this life, a jokester, a story-teller, a father, a coach, a teacher, sometimes even an asshole, but when I make a promise I do my very best to keep it! The ability to do so comes from having made hundreds of mistakes, letting numerous people down, lessons learned and realizing who and what you have become after living through personal tragedy and the suffering of others.

I promised her and I have always done my best. When we were trying to have children and nothing was working, I stood strong and promised her it would be alright, we laughed, we cried but I knew God would always provide for those with faith. We now have Parker and Jessica

I promised her that even though we would have no money for a long time we would make it after purchasing our ranch, because we knew it was where we wanted our children to grow up. We moved in with $250.00 dollars in the bank, we understood the payoff would never be monetary but would come from rewards reaped over time by our children. We are making it, it is a struggle at times but our children are amazing human beings, growing and thriving thanks to this place we etched out of the land; and they will forever know where home and family are to be found.

I promised her when we went to Haiti together I would let nothing happen to her or our group as we traversed a country still struggling with political power, corruption and strife. I did my best while on the island serving these beautiful people as local politics toyed with our mission. My promise was put to the test when our sail boat home tipped over in heavy wind and wave. Trying my hardest to hold as many as I could while remaining calm so others would be calm as well all while praying quietly, gripping those I love tightly and doing the best I could not to show my own personal fear I kept that promise.

I have promised her time and again. I have done my very best, but as I write this I am scared. Not something that is easy to admit. For I have promised her this will all work out, she is strong and it will be ok. But I am scared as hell. I am not sure how strong I can be this time. I am afraid of my own promises, that maybe they will be unattainable. My prayers feel unanswered, no calm has overcome my soul as in times past. I am tired of being tested by life, love and loss. I am growing weary and yet this is just the beginning. I feel as though my inner Betty needs a 5 month energy drink as opposed to 5 hour.

Closing this door to her room and walking away, leaving the one I love to modern science and medicine in hopes it will save her life is more than I feel I can handle. I pray she doesn’t suffer as others are currently suffering in the very wing she is assigned. I pray that God sees this woman for all she has accomplished in her life, knowing she has more to do here with people who need her smile, warmth and charm. I pray she heals with little side effects, becoming stronger day by day until she is the woman she chooses to become post-transplant.

I am praying all the time….

Jacy is currently on her 9th dose of chemotherapy in three days. She only has 11 more doses to go. Her spirits are up even though she hasn’t slept. As she puts it, I run to the bathroom, nap then an hour later run to the bathroom again. Her spirit is high, she is still feeling very positive, and I have no doubt she will show me the way as she has always done in the past through her amazing spirit. She is my wife, she is my best friend, and she is my life.

I promise……….

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Thanks Leukemia for reminding me you are still here.

Three weeks since my last posting, holy shit where did the time go? Apparently Leukemia needed to remind us it is still here?

Seriously what a busy three weeks it has been too! Children out of school, working to prepare the ranch and Jake for a week-long stint in Bishop California for the CHSRA High school rodeo finals, setting Cody up for success in caring for his mother and siblings while we were away, fixing then re-fixing, then repairing only to abandon my truck because she just couldn’t make the trip to bishop hauling our living quarters horse trailer. Borrowing a friends truck (thank goodness for good friends) to make the trip safely, then watching as Jake finished 11th in the state steer wrestling and 17th in the state cutting.  He was the only rookie to make it into the finals for steer wrestling! Something he is and should be very proud of as the finals were filled with some of the most talented kids I have ever seen!

This all leads us to today.

This morning I awoke pondering yesterday and tomorrow. Yesterday we (Jacy and I) spent the whole day at Stanford signing paperwork (you know the dont sue us if something catastrophic happens legal mumbo jumbo), meeting with doctors, understanding the upcoming schedule; more lab work, heart monitoring, and ultimately the dreaded sit down talk where we learn from -0 day-to-day +1 what will be happening to her body and what might possibly happen to her body in the form of acceptance or rejection.

The first week will be 16 doses of chemotherapy so strong it could quite possibly kill her, of course only in a low percentage of patients, but it does do damage to the heart muscle, kidneys and liver. She will be very sick during this time and I will not go into the specifics as it crosses over ones privacy.  Once she is down to zero or no immune system what so ever, she will receive the Bone Marrow transplant, which consists of nothing more than stem cells transmitted through a blood transfusion.  She will be given drugs to suppress the new immune system which have a whole slew of nasty side effects of their own. The new immune system will need to find its way through her body on its own without overreacting to its new home. This will be over the course of the next few weeks and where odds are strong some form of graph vs host disease will take place.

Graph vs host can lead to anything from minor sores in the mouth to minor or major skin irritation to life threatening rejection to which we are told things “could” get quite dicey if that takes place. Phew! Nothing to be scared of yet, right?

If all goes well, the body accepts the graph with the help a few drugs then within three weeks she can leave to outpatient treatment where her caregiver (me, parents and siblings) will monitor everything she eats, her temps, appetite and overall demeanor.  Once she hits the 12 week mark with steady improvement she has the ability to come home.  Yay!

Once at home (get ready for this) Jacy, who lives on a ranch and loves her horse more than most people like their friends; will not be allowed near the horses for up too two years! She also has to wait a minimum of a year just to go back to work and be surrounded by the young minds she loves so!! Listen I can hear you all now: hey at least she will be alive right? Yes this is true. But look at it this way, everything short of your children that you love has been taken away then held right out of reach for you to see everyday.  That would be pretty painful and hard to handle while keeping a positive attitude about survival. You are alive and it does leave something to fight or look forward too, but can be depressing at the same time.

Tomorrow

So tomorrow is that day. WE load up the toters she has packed her life into over the weekend; she kisses her children goodbye (the hardest things she has ever had to do) and we make what I assume will be a very somber, quiet, fear/tear filled trip to her new home for the next three to four months. I will then have a very hard ride home as now I will truly be a single dad with only being able to visit a couple of times a week per her wishes. (her wish is to keep the kids having a normal life and summer before school) Once school starts I will be there everyday if possible, running back and forth to be by her side. She knows what lays in store, she knows there will be days of doubt, pain, sickness and struggle, she knows that the outcome is unknown as to severity of reaction and she knows it is going to be hard, very hard.

She also knows she has a whole crew of people praying, she knows she has the unconditional love of an entire family, and she knows I love her more than anything in the world. In her heart she knows she will beat this and win.

This morning I stared at her sleeping knowing it will be one of the last mornings for a very long time I will see her angelic face next to mine. I fu%#ing hate this shit!

Deep breath, stand strong, we will survive this and she will kick cancers ass one more time!

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Graduation Day

Today is a day of celebration. Many parents are hailing the end of another school year while others are swollen with pride in regards to their graduating seniors. Last year at this time I was one of those parents. A year has come and gone so fast, life goes on for not only you as a parent but even more so for you child chomping at the bit to be a free young adult. Talk turns to college, when they leave, what major are they studying, are they excited to move forward living and learning on their own? It is a wonderful time for all. To that I say cherish today, every second! It really is a gift from God. Cherish the eye rolls, the hugs, the smiles, and silly photographs! Cherish the fact your child made it. Cover them in love, remind them how much you love them, and over the next month before they pack up their rooms to move on with their lives tell them you love them again! Then remind yourself it will all be ok when they are gone. You know why? Because they come home just a little more grown up, a little wiser, a little more thankful for all you provided, but most of all. They will come home, because there is no love like that of a family.
Attached is the my blog from last year. Oh what difference a year makes. Love to you all… Betty..

They call me Betty

This week has come and gone, a moment in time a memory for recollection. 13 years of life, tied so closely with friends, teachers, sleep overs, field trips, sporting events and many peanut butter and jelly sandwiches. I cant believe this day arrived so soon and left in such haste. Your school life started out simple enough; tears of separation, happiness upon returning home from a half day of school. Full days and mounds of homework, new friends, old friends, friends who moved, sadness and joy. Skinned knees, new bikes, scooters, baseball, the park. Swim meets, wrestling, cross-country events, awards, disappointment, contentment and successes.

Days where I felt we were losing you, days were we knew it was all going to be alright and days of unbridled pride watching you do what you do. Time spent, heart-broken, filled with sadness as reprimanding you or having to raise my voice while…

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