Leukemia an uneasy rider…

Unknown-2Grasping, clawing thin air, holding her chest she weaves back and forth, side to side. A look of terror covering her face, showing blaring signs of confusion, her eyes wildly searching the very corners of our room. My chest hurts, I can’t catch my breath, somethings wrong honey, something is really really wrong! Am I hot? Do I feel hot to you? James? James? James I can’t hold myself, where are you? Somethings wrong, somethings really wrong! My stomach hurts, my stomach hurts real bad, James? Somethings wrong (speech beginning to slur)

In fact something was wrong, very wrong. I was alongside of my wife as she jumped straight up from what seconds earlier had appeared to be a sound sleep. Starting a downward progression, a health scare that would for a few moments challenge my ability to cope, compensate and help this sweet woman through the opening moments of what would become a 12 hour medical journey.

Me: Babe I am right here, right next to you, what is wrong?

Jacy: I am hot, I don’t feel good, something is wrong (speech slurring), where are you?

Me: I told you I am right here, do you need me to call 911?

Jacy: No, somethings wrong, somethings really wrong, I don’t feel good, my heart is beating out of my chest and I can’t breath! Somethings wrong (repetitive answering)!

At this point Jacy began slurring her words even more! Her eyes rolled around within their orbits and she forced herself into a tripod position that was wobbly at best.  I began to panic! My head was spinning, what do I do, do I call 911, what is wrong with her, she isn’t speaking to me, holy shit is she dying! It felt like an eternity, sitting there staring as my wife’s body began shutting down, doing things I had never seen it do before. I wanted to open a window and scream for help! For some reason my phone wouldn’t bring up 911 and every time I tried my fingers fumbling from shaking, inadvertently locked the device, rendering it useless until I could hold one digit still long enough to manipulate the finger scanner. I by all accounts upon reflection was that guy! A swearing, stuttering completely useless basket case.

Then something happened. A recollection, a memory, a proverbial light bulb flashing over my head like a Las Vegas strip sign! And like the flip of a switch the realization struck me: I don’t need help! I am the help! Yep that’s right folks, through the heart pounding, fear laden panic of watching my woman disintegrate physically and mentally I recalled a somewhat important fact. I know what to do! I am trained to deal with this very situation! Holy shit! HELLOOOOOOOO MCFLY!!!

That is right, apparently when the patient is someone you love, that one person you have pledged your life too, the human being you swore in front of God to love till death do you part, you tend to forget important information like, well uh like you are a firefighter with 18 years experience as an EMT! You have evaluated, and helped prepare for transport more sick people than you care to remember! Triaged, treated and transported every type, diseased, ill, injured, trauma, heart attack, respiratory distressed, overdosed, ingested, kidney failure, cancer ridden, etc… human being on the planet! So why on earth are you dropping the ball on one of the most valuable patients ever to be in your presence?

And like that the light switch flipped! Questions changed, responses changed, and within a few quick seconds, just by shutting off my emotional side, I had determined my wife was either in the midst of a possible life altering allergic reaction to the Neupogen injection I had given her not more than 50 minutes earlier or she was mid TIA (Transient Ischemic Attack) Layman’s terms; a minor stroke! She met all the criteria for both! Confused speech, altered level of consciousness, rapid heart rate, pale, cool diaphoretic, loss of muscle function to a side of her face, blotchy redness on the chest and involuntary muscle movements. Yep mirroring symptoms to the point, one could have invariably irritated or influenced the other.

UnknownSo I did what any man in my position would do, could do, or hopefully would think to do. I threw her in our car and headed to the emergency room! Now hold on, before you put a hand over your mouth and yell at me through the computer screen: Why didn’t you call 911? Its simple math really. I live exactly 7 minutes from a level 2 Kaiser hospital. It took me under a minute to get her in the car. That is 8 minutes. It takes 1 minute to reach dispatch from my phone, another 30 seconds to dispatch our engine in combination with a responding ambulance for a ride out to my house that is at best 12-14 minutes.  After toning out the call it takes an average of 2-3 minutes for crews to look up the address and get out the door. That is a total of (rounding) 18 minutes to receive help. By the time they would have gotten to my house we were already in a room being treated. It was scary, it was risky, it may have been stupid on my part, and I would never under any circumstances pose that any one person take that risk upon themselves, but it was done, and we were in the ER, safe and sound!

Arriving at the hospital, she was wheeled into the waiting area where she promptly declared BATHROOM!!!!  Mario Andretti would have sure been proud at that way IUnknown-1 was moving when I passed that crowd (gratuitous Charlie Daniels plug). Sliding sideways into the first bathroom, Jacy began vomiting, and vomiting and crying. A very nice security guard came in and helped me take care of her, while the registering nurse took my word we were who we said we were and put us right into the system.  Within seconds we were relocated to the triage nurse who stared confused at my patient transfer rundown in regards to my wifes medical condition. Moving like a rabbit the triage nurse wheeled us into the ER and as we turned the corner it was obvious which room we  were destined as two nurses feverishly wiped everything down with disinfectant! (special germ precautions for Chemotherapy patients) Then as we drew closer my heart leapt with joy as I recognized the smiling friendly face of our RN (registered nurse). It was one of the moms from Jacys school. Jacy had taught her daughter and my wife was one of her favorite teachers. Truth be told her daughter is one of our favorite students! I say ours, because my wifes students are my students too. Over the years I have come to know most of them by name and when ever I see Jacy at work they all talk with me, give me high fives and generally bring out the dad in me! I am Mr. Jacy! They all make me smile, but some make me smile more than others and this little girl is one of them.

Things moved very rapidly, I helped where I could and stayed out-of-the-way when I needed too. Just as things began to slow down a bit another surprise walked through the door. One of our firefighters who works as an ER Tech was also on that night. It was fantastic to see his face, my fears were quickly calmed as now there were two people who knew us, knew my family and genuinely cared for my wife.

Thus began a long night at a Kaiser ER. Needles here, blood drawn there, chest x-rays, CAT-scans, blood pressure, oxygen, 3 I.V. bags of fluid, antibiotics, and the best damn treatment I have ever had at a hospital. I cannot emphasize enough how well we were treated! The on duty ER doc that night was funny, charming, with honest concern for our well-being. She was the kind of person you hope to meet someday outside of work to share a drink and a few laughs! I am forever in Kaisers debt.

12 hours later we walked out the back door. Ok I walked, Jacy shuffled. We slowly climbed back into our car, and drove carefully home. The final diagnosis? Undetermined, but it was narrowed down to either a minor TIA or an allergic reaction to the Neupogen.  A phone call later that evening from Jacy’s oncologist would confirm most likely the latter. Yep I still got it!

Returning to our house we walked upstairs, my goal was to tuck her into bed and watch her sleep for a while ensuring all was good. Apparently being up for 28 hours doesn’t agree with my aging body anymore because the next thing I know its 4 hours later and I am in bed looking at her sleeping peacefully. Getting up, I kiss her forehead, thank God for getting us through this day and say a little prayer for all who helped us the night before. Walking downstairs my mind cant help but ponder how many more times we will travel this road, how many more scares will we survive? How many more long sleepless nights will we endure? Then I realize, it doesn’t matter, because no matter how many more “times” there are, we will win in the end. Jacy continues to kick cancers ass and I will continue to do what I can to support that ass whooping!

Sleep or no sleep, fear of confidence, vomiting or solid good health, it really is as simple as that… There is no other option…

images

A day in the Face of Leukemia.

images-21

10 pm. Finally there is peace and quiet. I am alone with my thoughts. (not great company at times) I am…..exhausted. The children are all nestled in for the night, leaving me alone to rest, think, plan, and prepare.  Ok also to drink a nice cold beer…

These children, these genetic markers, fruit of my loins, incredible individuals who are searching, striving to understand what exactly is happening to their mom, taking my every moment with inquisitive thinking, questioning, testing my very patience. It is easy to forget they are not at a level to fully comprehend exactly what is going on with their mother. As each day unfolds and my fervor reaches pitch, they are unwitting victims to my own personal demise. A tossed bit of clothing here, an untended animal there, a room in disarray, teeth forgotten and hair occasionally not washed during the cleansing process. All lead me to instant eruption at times.

As my mind continually works at an ever rapidly processing pace, my inner ability to control or grasp a solid foundation of patience seems to crumble. It is not as though these little cherubs have truly faltered in any way, but more as though their little mistakes are magnified by worrisome frustration on my part.

A day in the life of the husband supporting a cancer patient.

Every morning I awake exhausted! My back aches beyond belief although I am beginning to feel this is some form of sympathy pain helping me relate to suffering my wife may be feeling. Breakfast is some delicious Javita coffee and a small bowl of oatmeal. Thankfully most mornings, the horses are already fed. Two of our “borders” in particular have become my barn angels. (Lisa and Olivia) Saving me from this chore as lately I just can’t seem to function with any repetitive, normalcy as the sun arises. After staggering around like a lost puppy looking for its master, I can usually get dressed before our children awaken wanting, no needing my utmost attention. During this time my mind is already checking off a multitude of things that may or may not need accomplishing before I abandon ship, heading off to be with my wife in the hospital.

After a short morning briefing the kids have their chore lists lined out, some laundry is done, dishes, washed, bathrooms cleaned, dogs taken care of and out the door I go to work a few horses that need to be on a daily routine. After completing this chore, its back into the house, showered, clean clothes, check in on the kids progress with their chores, hugs all around, a list of objectives to the oldest who is now watching siblings until my return and then off to Vallejo to be with my wife.

Easy enough, yes?

Walking through the door of room 5020 after saying hello to many nurses who know me by name, I lay eyes upon her, and begin feeling guilty. I still cannot understand why this is happening to her. This beautiful, vibrant, glowing woman, who by all accounts has never done a horrible thing to any ONE person in her entire life. It just doesn’t make sense to me. Why isn’t it me? Why hasn’t this awful disease happened to me? It would make more sense, I havent always been the nicest of people, I didn’t always care about others, their needs, their troubles, or problems. In my youth I was a very self-centered individual, who didn’t always treat people with the respect they deserved. But then I suppose life isn’t about who deserves what, as we see on a daily basis in the news, but for myself it just doesn’t make sense why this woman, this person who saved me from myself, this angel who puts everyone and everything ahead of herself, why it has to be her.

She is happy to see me! Like a prisoner is happy to see a loved one during their monthly visit. Trapped in a 15×20 room, with crappy food and lines pumping chemicals into you from all directions, one could understand the importance of familiar human contact. She proclaims her affection and declares how much she misses me, it makes my heart sink, yet fills me with joy at the same time. Sinking because I feel her lonely pain; surrounded by many but alone none the less. Yet to have someone who needs you, who loves you so much that after all this time together can honestly say they have missed you. Well it is powerful.  I watch couples these days fight over the stupidest things. Complaining in front of everyone, tearing down their marriage on a stage for all to see and it makes me sad. These people don’t realize the gift given by proclaiming their love for one another or what blessings are right in front of them,  focussing instead on the possibility that some grass may greener on the other side. Marriage is work, it takes hard work at times, but there is an old saying; you reap what you sow. I try daily to plant and fertilize my marriage and I believe it shows. It shows when I walk in the room and my wife beams at me with that million dollar smile. It shows when she grabs my hand, squeezing tightly and says; don’t leave me. It shows when she tells me she cant wait to be home so she can feel the security that comes with sleeping alongside her husband. It shows when I leave and all the way to the car I feel like part of me has been left inside that fifth floor room.

Jacy has cancer. I know she is winning this battle, but every time I say it, every time I write about it, it chokes me up. Jacy has cancer. My throat tightens. Jacy has cancer. My stomach feels sick. Jacy has cancer. My eyes become moist. Jacy has cancer. A dark cloud overhead looms like a storm waiting to throw lightening my direction. Jacy has cancer. I thank God the children don’t fully understand and only feel as though mommy is just on vacation in the hospital. Jacy has cancer, Jacy will always have cancer, Jacy has cancer.

Coming home, I am met by the many blessings of being surrounded by those who care. Nice notes, cards, letters of hope and understanding, dinners dropped at our door, the barn taken care of again and a multitude of additional support. But just as Jacy wishes nothing more than to escape her sterile cell, pulling needles from her veins to resume a normal life, I wish for her to be home, covered by the safety of these four walls, never having to travel this journey ever again.

Tomorrow she does comes home. The first few days are going to be rough as sickness, fatigue and living immunocompromised will be scary. But she will be home. In three more weeks she gets to do it all over again, returning to hospital, becoming reattached to chemicals that will save her life. Its a small price to pay to beat this evil demon, but then that’s easy for me to say as I am not the one fighting to survive. Or maybe its easy for me to say because it’s the only way I know how to deal. Placing things in categories and checking off  lists, one box at a time. The main thing is she is coming home.

So as I reach the end of another long day, I just want to say; Thank you to everyone, all of you, the kind words, the hugs that mean so much ( I love hugs, it’s the dad in me) , the smiles and great conversation. This is a fight, a fight we are going to win, no one fights alone and all of you have proven that to be true. Jacy is definitely not fighting alone because of all of you and standing by her side as her husband has been my absolute privilege.

Thank you for allowing me to make that happen..

images-1