The Longest Week of My LIfe...

The last time I wrote here I was so happy that Mom had been transferred from ICU to the step-down unit. Unfortunately the move was not the good news we anticipated. When I arrived at the hospital Sunday afternoon to visit her condition had declined significantly, and in keeping with her wishes we opted not to return to ICU. Instead I began working with Hospice to arrange to have my mother brought home to spend her final days here in the home she enjoyed with my father and her family, surrounded by the people who loved her the most. It took all of Sunday evening and most of the day Monday to get everything in order, but by six o'clock Monday evening my Mom was back in her own bad talking clearly with myself and her twin sister for the first time in four days. What follows is a collection of thoughts I had and wrote in bits and pieces over the past week and a half. They are not continuous or all inclusive, but they are significant and it is important to me to record them here. My mother didn't have many clear moments after Monday and after Thursday morning she didn't regain consciousness again. She passed away at 12:35 AM on Friday, April 24,  2009, lying peacefully in her own bed, with her sister and I holding her hands and my fifteen year old daughter lying beside her. My husband rubbed my back as she took her last slow breaths and my middle son lay sound asleep on the floor of her room in the corner. Strange though it may seem, it was tragic in it's enormity and beautiful in it's simplicity all at the same time. Our house feels empty without her and my heart aches for my amazing mother...but there is peace in knowing that I made her last moments on this earth as free of pain and and fear as I possibly could.

Monday, April 20, 2009--12:30 am

I can't believe this day. Bart and I are here waiting with Mom to be transferred upstairs to the palliative care floor in anticipation of her discharge to home hospice care later today. Just twelve hours ago I was thinking we had turned the corner, that we might have bought some time at least. When we got here about one o'clock yesterday afternoon though it was obvious that things were in decline again. Mom's mental status was unclear and confused again, indicating a worsening of the pressure and damage in her head. Now she has a fever they can't find the source of and bleeding in several places due to her low platelet counts. The problems she is fighting are many and seem to be multiplying by the hour. It is apparent now that they are simply too numerous for her to overcome, and when she is conscious it is only to say that she has had enough and wants to go home with me. I'm terrified--of losing her at all, but also of not getting her home in time, being unable to give her that most simple of things-- the comfort of her own home.

I am amazed by the quiet of this tiny corner of the hospital, with it's hardwood floors and flat-screen TV's, devoted only to the care required for maximum comfort, no efforts made to cure or treat. I have stood here at the dark window for more than an hour now watching the street lights blink yellow all the way down Main Street and Liberty Avenue. Here I sit in the silence watching over the sleep of the man I have always loved and the woman who has always loved me. I feel the weight of the world on my shoulders and in only a few more hours, with no sleep in more than twenty four, I will spend hours on end in a frantic flurry to accomplish everything necessary to get her home again, because I promised.

11:50 pm

It's done. She is home and resting quietly next to my aunt. Her meds have been picked up from the hospital and supplies have been ordered. We talked a bit before she faded off to sleep. She knows she is home and in my hands now (as precarious a situation as that seems to me, it seems to comfort her knowing that I am now in charge, not the doctors who don't know her or nurses with other patients to care for.) We have said a preponderance of "I love yous." I am overwhelmed but calmer than I have been at any other point today because at least I know my promise has been kept. I brought her home and now whatever happens I will know that I have done all that I could. I have done all that she taught me by example when she did it for my father just five short years ago. So now I will sleep, restlessly I'm sure, but finally, just sleep.

Thursday, April 24, 2009

There have been no good moments today as there have been the past few days. No moments of awakeness, no requests for food or chapstick, no complaints of thirst or discomfort, not even any restless turning in the bed, despite a bath and my efforts to let her know I am close by. Her breathing is growing more labored and ragged as the evening stretches on, and I know from experience that the end is close by, that she will not likely see the dawn of another day. Under the instruction of the hospice nurse on call her doses of liquid oxycodone and ativan are given closer together to alleviate the anxiety of being unable to catch her breath, if she is able to feel any anxiety at all now. I spend most of the evening brushing her thinning hair from her face and whispering my love close to her ear.  The oxygen concentrator thumps steadily in the background of everything we do this evening. My two oldest children have fallen asleep on either side of her in the big queen-size bed. As the night stretches on we move my ten-year old son to a pile of blankets in the corner and my daughter awakens to spend these last few hours with her beloved Nunny. I am restless myself but the last moments come just after the birth of the new day and are anti climatic, quiet. My mother's dear friend of forty years ( and a nurse for hospice) comes and performs all of the necessary tasks-- the pronunciation, and the phone calls, gently wiping her friends face and later telling me it was an honor to perform for my mother those final necessary tasks and to know that there was great dignity in her passing.

I stay with her body while the funeral home wraps and carries it from the house. I could escape to the upstairs but I feel I need to see her out, to assure that I have followed everything through to its endpoint, to know that my job is done a thoroughly as I know how....

But now I am lost, completely lost, an orphan of sorts.....

GOOD NEWS!

Mom made it out of ICU and was transferred to the step-down unit!!!!! YAY!!!!!

Thursday Afternoon

Thanks to everyone who left their good news in comments on my last post. It's good to hear good news. I had been hoping to come across good news of my own soon, but so far, not so good. They moved my Mom to ICU this afternoon to monitor a bleed in the right side of her brain (caused by her plummeting blood values.) Wish I knew more. Really wish I could get off this roller coaster already.

The sh#t-storm can stop any minute now....

Mom finished up her first round of chemo today and then we found out that a stem-cell transplant is on the agenda after two rounds of consolidation chemo. Then my ex-husband called to tell me my dog died. He was only three, but German Shepherds often have fatal troubles with bloat. My kids all came home crying today because of the dog. I hate to see my kids hurting like that. I would really like some good news now. Anything. Anyone????

At the End of the Day...

It has been so crazy here these last few months; so much chaos and all of the extremes of emotion. Like I mentioned yesterday, my Mom started her chemo last night. My heart is aching and my brain spends the day searching mental statistics and looking for a way out of this current health crisis, though it is obvious to me that there is no way out, only a possible way through it. We will just have to wait and see for now. I do know that my Mom is tough as nails. She worked her full-time night job right up until four days before she was diagnosed. Her platelet count was only 9000 instead of the 150,000-300,000 it should have been but still she went work and struggled through every single night. So now I am trying to concentrate on the idea that it is not the odds that matter so much right now, but the fact that as a family we often find a way to beat the worst odds that will make a difference here.

Still there are good things happening too. On Sunday I can take a pregnancy test to see if my intermittent stomach troubles are from stress or an early sign of the new addition we are hoping for. And even more than that right now, every night I cuddled up in the crook of B's arm with my head against his chest and the steady rhythmic pounding of his heart in my ear and I do my best to dream about babies and summer days at the pool with my family. In that spot, that moment I know that the only thing I can afford to focus on is how very loved I am and at the end of the day that is all that really matters.

One step at a time...

Diagnosis for my mom-- AML. Prognosis uncertain pending genetic studies. Starting chemo at 9pm tonight. More later.

Really? You've got to be Kidding Me...

After a brief day of reflecting on all the great things going on in my life reality struck again with a vengeance. Yesterday was my baby's sixth birthday. I spent it away from him though, in yet another hospital, getting more bad news. My Mom has Leukemia.