Friday, April 09, 2010
And then I go to therapy. I pay good, hard-earned money to have a heart-to-heart discussion with another human being to reassure me that I am navigating through everything in the best way I know how at any given moment. My therapist delivers this message perfectly each and every time, and yet I always seem to lose the sense of his message as the week or so wears on.
I cannot say enough about my therapist. I wish I would've started earlier, maybe I would've avoided a few pit-falls along the way. I'm almost a year into it and every time I feel like maybe I've done enough therapy, I realize that it's probably best to continue going, continue talking and exploring, continue writing that check.
My brother's condition still consumes me. It's been a little over five months since the world came crashing down and he has made remarkable progress. The sequelae of the ordeal is still very much alive and kicking today in the form of tremendous pain in his feet and lower legs. The nerve damage in those areas was extensive and he still suffers a lot from it.
And I feel a little bit defeated about life over this, and over other things. Is this what growing up means? That people die and get sick and you are left to deal with it? I am still figuring out life as a widow with two kids. I still get random flashbacks about anything and everything concerning Rob's passing. I ruminate over what happened with my brother and what I could have done to prevent it. On top of this I'm juggling kids, chores, work, paying bills, planning for the future.
Sometimes, I just want it all to STOP. Just stop already.
I wish I could rewind time. Go back to a place when there was some sort of peace and simplicity. A time when we were all healthy, alive, and happy.
However, there was no such time to rewind to. At any given time we may have been those things, but not all simultaneously. When I was not yet a widow and I did have a nice house with a dishwasher and everything, Rob was sick and my brother was beginning his path to destruction down in Glassboro. Rewind earlier and my brother was still some-what innocent but suffering in his own way, and Rob, who I didn't know yet, was dealing with his first failing marriage, and I was being tormented to shreds by my ex-boyfriend. Rewind earlier than that, and we were children and dealing with a fantastically dysfunctional home-life.
So let's not rewind. There was no perfect time. There is nothing to be nostalgic over, even though my mind wants to trick my memory into believing so.
It all boils down to now. It always does. Now is the only moment I have any control over. All I can do is keep trying, but remember, I'm paying good money to be reminded that I am doing the best I can...right now.
Saturday, March 06, 2010
Hey, it's happened before and most likely will happen again. This isn't projected to happen in my lifetime. You never know though, right?
Whatever, I'm starting this off with a digression but it's very late and I was awoken from my melatonin-induced slumber by teenage drama and my brain is all over the place.
A lot of things are going on but aren't they always?
First, I need to get the hell out of New Jersey. What was I thinking? Actually, the move back has been beneficial because I am functioning better now that my life rotates around a more normal Monday through Friday routine. I do benefit from working and I really can't imagine how that could have happened while living in Spring Hill. I feel a closeness with my supervisor that would've been hard to match anywhere else at that time and that has made all the difference. To be around the familiar faces, the people who's life stories I have had the priviledge to share, those are the things I craved so much while I was away. My return has built me up into a stronger and better person than I was while I was gone.
But seriously? New Jersey? Why do you make it SO DAMN HARD? The traffic! The taxes! The expense of everything, not just money, but time and patience and mental stamina. I seriously can't take it anymore. Well, I actually *can* take it but it's only because I have a plan to escape your oppressive ways.
Naturally, I will move back to Florida after certain things have come to fruition. I need my parents. I need to be near my brother. And frankly, I just need a break from the madness that is NJ.
I have a special relationship with Florida, that's for sure. I broke my ass to get down there, only to have my dreams shattered into a million pieces. I have spent hours upon hours getting to know Florida. I have poured my heart and soul into learning it's rich history, learning the lay of the land, studying it's topography and lores and myths and economic trends in order to find a home. Not just a house, but an actual home in this place. And it has been both good and evil to me.
My relationship with this place is one that I wrestle with daily. It does not go away. Florida calls out to me, and yet I can't help but be a little mad at it over what I feel it has taken away from me. I work on this mentally every single day. I don't know if it's irony or fate, but the past three men that I have fallen in love with are also lured to this place that is Florida. But even putting that fact to the side, I myself am in love with it.
There is a special connection that I have with it. And let's be straight: it's not the Disney aspect of Florida (barf), nor the lack of snow (because I love snow) or any other touristy reason one would love Florida. It's something much deeper than that, something I can't exactly describe at the moment. It has a lot to do with my family being there while I feel stranded up here. It has a lot to do with unfulfilled goals and dreams.
It's got a lot to do with unfinished business.
And now the melatonin is kicking in again...
Tuesday, February 02, 2010
To back track, Penny's dad was born with a very serious heart condition called transposition of the great vessels. Basically, the main arteries leading out of the heart are leading in total FUBAR directions and without surgery most babies would die within a few months if not a few hours. However, by the grace of medical technology, Rob was able to make it through 37 years of life. These days, I believe that kids with TGV will make it longer because the surgeries have been refined. Rob was one of the first to have certain surgeries to treat TGV and his life undoubtedly contributed to medical advancement.
There is no question.
Given his history, the only thing to do was to undergo certain tests during my pregnancy to ensure that I was carrying a relatively healthy baby with 4 distinct and functioning heart chambers with 4 relatively healthy valves with 2 main arteries leading in the right direction. Penny was able to have most of those things but she did have a mitral valve that didn't close quite perfectly after each contraction of her heart. Not a gigantic deal and it may not have ever been picked up if they weren't actively looking for something.
However, after she was born, another small issue was picked up. Penny had somewhat of a patent foramen ovale, a small opening between the right and left ventricles that is totally normal for fetal circulation but which typically closes during the first day or two of life. Usually it closes spontaneously upon the first inhalation of air after birth. It's like a magic switch in your heart that says "now I am a fetus" and "now I am an independently breathing organism."
So hers didn't close for a while. Some people's never closes. Most do.
And her mitral valve has become strong enough to shut tightly closed after each beat of her heart, preventing any back flow of blood into her system.
I'll drop the technical jargon for the more human side of all of this.
Rob would've been thrilled to know that he could make a baby with a perfect heart. That would have been the cherry on the whipped cream of the delightful morsel of life that Penny was to him. She was, and will always be, the greatest contribution he ever made to life.
The people at the cardiology center were very kind. The doctor was beyond sad to hear about Rob's passing. He really took it to heart, saying that for them it felt like a tremendous loss. He studied at NYU were Rob had all of his surgeries, studied under the doctors who cared for Rob over the years. He was obviously and genuinely affected somehow by losing one of what he thought was "his own" in terms of patients, even though he never dealt with Rob.
The nurse in me came forward and explained that when Rob was born he was given a prognosis of 6 to 12 months. Months. And that through the hard work of people just like himself, this doctor, Rob was able to enjoy 37 years. Years. And here is the baby that is the result of that. So thank you.
I have gotten uncannily adept at breaking this news to people. I always anticipate it before it happens, I prepare my face for the moment, I break the news, and then I reassure everyone that it is Ok. However, I knew this appointment, and the moment that it would bring, would be especially poignant. And I walked out of there with excellent news about my daughter.
Overall, and I can say this with all certainty, life has been better to me than it has been bad.
Also, I might be going to Jupiter, FL on a really spur of the moment deal. Every cell in my body says GO GO GO and yet I need to sleep on it one more night in case some little voice in me says no...no...no... I hope that doesn't happen but it's super-short notice.
Friday, January 08, 2010
My brother only needed the porta-cath for a few days and a few more dialysis treatments before producing urine and excreting chemicals sufficient enough to be safe for life outside of the hospital. He underwent a nuclear stress test that proved to his doctor that there was no damage to his heart. The porta-cath was removed and he was able to go to my parents new home.
The problem now is neurological. He has a lot painful pins-and-needle sensations in his feet and occasional, random shooting pains in his legs that take his breath away. The go as fast as they come and there is no prediction of when they will occur.
Let me discuss the high points though.
I flew out to Florida with the girls on December 23 because there was no way I was spending Christmas away from my folks. My brother greeted us and demonstrated how was able to amble around without the walker. His gait wasn't steady, fast, or graceful but it was bona fide walking without the walker. Having seen my brother learn to walk once before, 26 years ago, and seeing it again now was a bit of a mixed bag emotionally. I definitely cried, and for at least two reasons. I was both delighted that he could walk independently, at least a little, and so sad that he even had to re-learn this skill in the first place.
Plus, the thought of him living in pain is almost unbearable for me to consider and yet it is so.
The next day we went to the seafood store that had five live lobsters on special order for us to pick up for dinner on Christmas day. The plan was surf and turf, twice baked potatoes, and a few other sides. I tended to the lobsters every couple of hours to make sure that they were alive and that their environment was sufficiently moist and hospitable until the next day when we plunged them into a boiling pot of water.
On Christmas Eve, Penny slept in with my parents in their bed. A total grandparental indulgence, but I didn't balk. It made everyone happy. Penny worships all four of her grandparents and doesn't get to see my parents enough anyway. There was no tearing the three of them apart.
Christmas morning, I woke very early from the morning light. It felt quiet, much too quiet. Tears very gently came to my eyes as I realized that the quiet was from the absence of someone, someone who was always up early and not very quiet himself. Eventually I heard Penny making some wakeful noise in my parents' room, and then start to stir, and then the typical Christmas morning chatter that small children inevitably make, the kind that precedes the noisy opening of presents and exclamations over how generous Santa was this year.
During those moments, I felt so grateful that at least Penny had my parents this year to wake up with since she did not have me and her father to wake with. Mixed in were feeligns of jealousy and joy over my parents' fortune of waking up next to each other for the past 39 or 40 years. Maybe not jealousy, that just sounds wrong, but I don't really know if there is a specific word for the complicated feeling I held for their situation. It certainly wasn't vicious, like envy. It was more like a thought in my head that said, "those people might not have any idea of just how lucky they really are."
The momentum of Christmas morning quickly dashed the acuteness of my feelings of loss away as we woke up Jon and Sadie. It lingered in the background most of the day, just below the surface of everything but not interfering with the joy. It was always right around the corner, even as I boiled lobsters alive and scooped the interior out of the potatoes and poured the wine.
Still, this was the most manageable holiday yet and certainly the best Christmas I've had in years.
The following day, my brother and I met up with childhood friends who happened to be visiting family in St. Petersburg. What a delightful coincidence that we were able to get together. They have both grown into wonderful, interesting people. The older brother, who I spent a great deal of time with during middle school and early high school, designs shoes and has lived in interesting places all over the country. He still retains a love of the Delaware River that rivals my sentiments. The younger brother is studying to be a doctor, an osteopath to be exact, and gave me a quick adjustment of my neck in the parking lot that was gentle and felt like fitting pieces of a jigsaw puzzle into their rightful place together.
My brother spent more time in a vertical position that evening than he had in months. Before meeting up with them we had a lovely dinner together. The venue of our meeting was a really great place in north Tampa near the university that served food, had a bar, and featured live music. I think my brother's meeting with the younger brother studying medicine was a positive encounter and he paid a lot of attention to my brother's story and was extremely encouraging.
And he had a beer. Like a grown man would have a beer. And it was wonderful to have a beer with him and just...be alive together.
All in all, it was simply lovely.
I was so sad to leave that Monday after Christmas, not just to return to a short and hectic work week preceding New Year's Eve, but mostly because I miss my family tremendously. I even miss Florida slightly. Ok, more than slightly. It was a bit cold there, but it wasn't a bitter cold. It wasn't the sort of cold that turns me into a hermit. The night before we left, my brother took Penny and I out around the neighborhood in the golf cart to look at the Christmas lights. It was chilly but tolerable.
My brother and I had so many conversations, in-depth conversations about everything: our lives, our blessings and our obstacles, how things may or may not have gone if things had been different, our childhood, our family, and the future. During the visit I just felt so in touch, in-tune with him, and I really came to the realization that for both of us, whatever tragedies have occurred...well, this is the way our stories are supposed to go. These are the words that are written and there is no erasure allowed. It all depends upon how we re-tell the story that matters.
Mostly there was just a profound awareness of how we both came so close to the edge, maybe in different ways, but again, so close to the edge we dangled.
Tuesday, November 10, 2009
I went back down to Florida this past weekend to try to be of use. I managed to see my brother Friday night, Saturday, Sunday, and a little bit on Monday. His condition has improved although he is still acutely ill and still on dialysis.
He has made some progress by being able to urinate a little bit and by continuing to take walks with the assistance of a walker and a companion. His urine output is low but it is way better than nothing at all. He has regained some sensation in his feet but it comes in pins and needles now and the motor control of his feet isn't great.
His kidney function tests, BUN and creatinine, are still greatly elevated but dialyis can take care of that while his kidneys repair themselves. The numbers are a bit, well I wouldn't say alarming at this point, but they still kind of take my breath away. The rest of his electrolytes are fairly stable because of the dialysis and some medications by mouth that he is taking.
He requires infusions of IV iron supplementation because his red blood cell counts are low. The kidneys are partially responsible for red blood cell formation. Added to this is the act of dialysis itself on filtering the blood and the subsequent mangling of a portion of the red blood cells as they travel through a filter outside of your body. Inevitably some of those RBCs are going to get smooshed and be unable to do their job, which is mostly carrying oxygen to the cells.
His blood pressure has been high but this is not terrible given the fact that his heart is only twenty-seven years old and a stress test showed that it is, in fact, a strong heart that can handle a bit of an extra load. He has not had any notable cardiac events at all in the last few days.
He had a porta-cath inserted on Monday for his dialysis treatments. Prior to that he had an access device placed in his jugular vein which is good temporarily but more prone to infection that the kind he has now. The portacath was placed during a quick surgery that he tolerated well. He went straight to dialysis after that to flush out the anesthesia, contrast dye used during the procedure, as well as the excess waste of the past day or so that the kidneys still couldn't deal with. A while later he requested food, which he ate some of and tolerated well.
But let's talk about the more human aspect now.
I washed and massaged my brother's feet. He was starting to regain sensation which feels like pins and needles. I was focused on making him aware of where sensation began and where it stopped. I used everything I knew from previous training in massage.
Interestingly enough, the area of most muscular weakness corresponds with part of the kidney meridian that runs through his lower legs and feet. I refreshed myself on that topic and gave him a great massage on his feet, calves, and shins. He was able to identify what he could feel, and couldn't feel and I think it made him more aware of the progress he has made in the past two weeks. Nerve tracks can grow by 1 millimeter per day so we have a way to go but we're getting there.
Coincidentall later on tha dayhe also was able to release 200 milliliters of urine, fairly normal in color. He called me around 10:30 that night to tell me so. What a change from about 30 ml of urine he produced, black as coffee two week ago before the well ran dry. Healthy kidneys put out about 30 ml of urine per hour. So something good is happening.
I didn't see him too much on Sunday because I was helping my mother pack up some stuff for their move. Right before they went on their cruise and events unfolded, my parents had sold their house in the Orlando area and signed a contract on a house near the Gulf. Ironically, my brother is in a hospital about 20 minutes away from the new house.
It's a better area for them. I had mixed feelings at first because it's near where I lived, where Rob died. In the face of this new phase my family is going through, I could care less. What seemed important three weeks ago is suddenly not important anymore.
Jordan and I spent some good, quality time with my brother in the early part of Monday. My brother's surgery to insert the portacath was 1 PM. My parents had to take care of matters related to the move, like setting up accounts with utilities. My brother was picked up around noon and we followed him down to the holding area for the operating room. My parents said their goodbyes and took Penny with them to run errands.
We had about an hour to talk about things before surgery and spirits were high. I was feeling a certain de ja vous being in that environment, a cross between nursing school and the moments before Rob's catheterizations and surgeries. I was not at all uncomfortable, it almost felt natural and the conversation reflected that.
Still, the unknown always hangs above. Will he tolerate the anesthesia? Will he tolerate the post-operative phase?
He wound up tolerating everything. He wound up dreaming about running during his surgery. The little boy that I loved all while I was growing up, the one that was always running, bouncing balls, making noise, he was dreaming about running again. That boy who had a moody older sister, dressed in dark colors and constantly ruminating over the unfairness of it all; that boy was dreaming about his wide open future.
Wednesday, October 28, 2009
For the third time in the past 2 years, I felt my blood turn to ice again.
They told me that my brother was there in the ER and that he was alive but that they couldn't tell me more. They were trying to reach my parents who at the time were cruising the Caribbean. For some reason I couldn't recall what cruise line they were on but I took down phone numbers and names she gave me and promised to call back as soon as I could get through to them.
I'll keep the details spare but I assure you that it was very difficult successfully connecting with them on the ship at sea and coordinating things that needed to be done to get to Florida. In between making these arrangements I was on and off of the phone with the nurse in the ER trying to figure out what happened.
The HIPAA laws are a great thing in most respects but sometimes they frustrate family members and health care professionals alike. If you're lucky and perhaps say the right things, you can derive a little bit of information which might not relieve you but will at least give you an idea of what you are working with. And what you should be praying for.
I could ascertain that my brother was alive, that this event was not the result of a motor vehicle accident, but that he was extremely sick. Crying and pleading with the nurse, plus promising to never sue, I was able to get her to obtain verbal consent from my brother to give me certain details of his situation. She was able to tell me, through very specific questions I asked, that he had no apparent head trauma, that his level of consciousness was low but that he was able to speak a little, and did not appear to be in pain.
I asked about his toxicology to which she replied, "I do not have permission to discuss that."
So, we know where this is going. We know that my worst fears regarding him were true. And we know that with all of the diagnostic data that I obtained, that he was truly on the cusp of life and death at the moment.
The human body is a beautiful organism. Under favorable circumstances it functions better than a well oiled machine. The flux of sodium and potassium through cells, the lightening speed bolts of neurotransmitters across synapses, the dance of chemistry and electricity that makes our hearts beat in perfect rhythm, and every other minute function of our body that sways through us in good healthy was deeply compromised in my brother's body.
My brother's potassium had climbed to an 8 (normal is 3.5 to 5) and that his ECG showed peaked T waves due to hyperkalemia (increased blood potassium level). They were doing what they could to decrease the potassium but this is very dangerous territory. I knew that my brother was very close to a lethal cardiac event and just wanted to talk to him, to possibly infuse him with calm and prayers and love in case he wouldn't make it.
When I spoke to him on the nurse's phone I just telling him that I felt nothing but love for him and to calm down and to be receptive to whatever the people in the ER needed to do with him. I put blind faith into the notion that they were well-qualified to deal with him properly and that life would deal us a better hand in the next few minutes. Groggily he told me he loved me and the conversation was over.
A subsequent phone call revealed that my brother was in rhabdomyolysis. My brother's kidneys were not functioning. Kidneys constantly filter our blood, assessing the basic chemistry of our bodies and by way or osmosis and active transport ensure that we have the proper amount of fluids and chemicals circulating through our bodies at any given time. From nursing school until now I have considered kidneys to be the complementary set of chemists our body houses to keep us alive and well.
By that time my inlaws had picked up Penny to spare her my explosion of mental anguish and to allow me to coordinate contacting my parents, organizing Sadie and her care of the dogs, and obtaining plane tickets down to Florida for myself and my boyfriend Jordan. During this time managed to establish contact with my parents and discussed my brother's condition with the ER.
Jordan was a rock and his parents were beyond helpful with obtaining tickets for us. I felt helpless and yet I felt completely supported by the goodness of others around me. Again. I can only sum up my feelings regarding the goodness of people by quoting Carl Rogers who said, "when I look at the world I am pessimistic, but when I look at people I am optimistic."
Later that night, when arrangements had been made and there were no more phone calls to make I sat and worried and prayed and somewhat distracted myself by watching the Yankees earn their way to World Series. The magical, schizoid part of my brain again related the victory of a sporting event with a fortunate personal outcome.
The next afternoon I was back in Florida, at his bedside in the ICU, and told him simply "I came here to tell you the Yankees won last night."
My brother wound up admitting to me that he had done some cocaine, possibly laced. Cocaine alone can land you in this state because of it's very effects on the cardiac system. It can tax your blood vessels all the way down to a microscopic level, and the kidneys have tons of activity going on at the cellular level. Use of cocaine is heavily associated with rhabdomyolysis.
I cannot even address this aspect right now. It was the direct result of hard drug use. There will be more words on this in the future, trust me.
Tonight I sit at my computer in New Jersey. The days have passed by with much improvement, propelling my brother away from a lethal condition and into a future that seems filled with hope if he can keep himself away from what landed him in the hospital in the first place. He's had 4 or 5 dialysis treatments and while his body chemistry needs vigilant assessment and treatment, he is a live and will mostly likely remain so.My brother's kidneys may or may not function independently in the future. Tonight they do not, but the toxins have been cleared of his system, at least temporarily, and he is lucid. This may be the break they need from the onslaught of substances they ordinarily take in, assess, and discard into urine. Or they might need a longer period of rest. Or they might not ever wake up.
Regardless, he is alive.
I have found myself being strong through this situation. I think the road I have traveled since Rob died has made me a stronger person. I honestly think that is the case. I had a therapy session on Thursday (what timing!) that reaffirmed my suspicion that I was handling everything appropriately. My mind was definitely playing tricks with me afterwards, especially at night with my funny little of habit of not sleeping during times of stress and all the weird little acrobatics and cartwheels my mind can perform under these circumstances
I do not know what the future holds but I know that he is alive and we can work with that.
Thursday, July 02, 2009
Well, maybe it is a pervasive issue in the human psyche. Or at least mine. But we talked a lot last week about how confrontation and assertiveness can seem like a really scary thing to practice. It can cause discomfort and humans do not like discomfort. Well, most don't. I am part of the most don't.
However, I am trying to build awareness of when the need to assert myself is a must and practicing this very delicate art. I'm trying to do it in a different way. The old way that I am trying so hard to break away from is like this: avoid it until it is entirely uncomfortable and messes my mind up completely, then finally say something in a way that leaves me feeling like apologizing afterwards because I came off like a bitch with pent-up rage.
So that old way will not do. I would rather go to bed at night knowing that I made my needs or my kids needs known, in a fair and kind way. The reaction of the other party doesn't matter as much as feeling comfortable with the way I delivered the message.
I stumbled through this task a little bit this week. I can count one time where I didn't do this correctly, one time where I think I did alright, and another time with stellar results.
The stellar results incident was when I had a decent, human discussion with my landlord over this stretch of carpet at the top of the stairs. The dogs like to think of it as an extended version of the yard and, well, it smelled and looked like hell. The tenants before me either used it as a toilet or the designated coffee spill station and it was just horrible. Every night I would find myself carpet shampooing it to no avail, and every morning when I walked over it to use the bathroom it was a sharp reminder that I was a renter with less control than a home owner.
So I asked him if I could tear it up. No big deal to the rest of the world, but I have always had a very...interesting relationship with my landlords. Always fearful of speaking up. Always not wanting to rock the boat. I know, it's weird and it's all wrapped up in my avoidant personality and my desire to really not be a tenant and to rule my own kingdom (aka HOUSE).
He was thrilled with the idea and basically scolded me for even asking. His words were pretty much this: You are a good tenant, a good woman, and you know how to take care of a house. Do whatever you want and don't feel like you have to ask. Well, alrighty then.
His affirmation and this small gesture, plus a lot of sweat, swearing, and bandaids has taken me miles away from feeling like a person trapped by circumstance to a person who just might be able to enjoy the next couple of years here, before Sadie graduates and it's time to settle back down into my own home again.
I know that ripping up some carpet feels like a silly thing to be so joyful over, but it's huge in my world. We talked about this at therapy and came to the conclusion that it is a small victory in enjoying my life now. My life has revolved around modifying my environment to make it more beautiful and comfortable for so many years now that it made me feel powerless to think that I was unable to do so in a rental. If you've been reading this blog for any length of time you know of my penchant for ripping down wallpaper, spackling, painting, clearing debris, planting things, and basically controlling my own domain. I have missed it and it makes me feel very good to gain some of that back.
My landlord is awesome. My desire, wherever I go, is to leave a place a little bit better than the way I found it. I can do this here and it makes it feel a little bit more like a home.