Friday, February 22, 2013

Robin Roberts is my hero. Fighting for life is HARD

Robin Roberts returned to Good Morning America yesterday and I was riveted. She had a bone marrow transplant; I had two stem cell transplants. While the two are different, they are very similar in treatment, workup, side effects, and treatment in general. I purchased People magazine with her on the cover. She is beautiful and rockin' it without a wig. I am not there yet. I wear a wig- a good one and I dare say it looks better than the hair I had before I shaved it all off.

She talks about how afraid she was at time. How sick she got. How her muscles atrophed and how weak she was. How she still has her heart pound every time she goes in for blood work. And how she still has chemo brain. Me too!

The month prior to diagnosis
Leading up to my diagnosis was not a fun time and I started to know in my gut that something wasn't right. In December, I went on a business trip to New Orleans and worked ridiculous hours. While I wasn't tired, I wasn't mentally sharp anymore. Co-workers would mention meetings I had been in that I had absolutely no memory of. I left important documents in public places. By the time I flew home, I was exhausted beyond belief. The next two days were a Thursday and Friday and I was given comp days to rest up.

After dropping off the kids at school on Thursday morning, I started cleaning the house. "Rob" (my alcoholic husband) never cleaned and he was a slob and I was disgusted with the way the house looked. So I did laundry, unpacked and scrubbed. And then I did my least favorite thing in the entire world-- I started balancing our checking account. Rob stayed home that day and around noon we were going to do something together. I saw on the account the Rob had paid with the debit card for something at Costco. I asked him a simple question: "I thought you paid cash at Costco but it shows here that used the debit." I kid you not, he started SCREAMING at me like only Rob the Great (Alcoholic) can. His scream is this freaky bizarre falsetto/mezzo soprano pitch. And he wrings his hands and nearly jumps up and down. Seriously, unless you see it, you wouldn't even believe it. He looks like a freak and sounds like a shrill woman.

I asked him as calmly as I could, "Why are you screaming at me? I can hear you. I'm right in front of you." In which case he started screaming at me some more. "This is my day off! I want to relax!!!!!" I said to him back, "And this is my comp day. I am exhausted. And I am doing things for our home-- things I hate doing, things that must be done, and things that you promised from Day 1 of our relationship that you would take over [like the finances]." 

He then called me a bitch and I stood up and shoved him hard and told him to shut the fuck up. I grabbed my handbag, got in my car and drove around sobbing. Rob and I had a counseling session that afternoon together with his alcohol counselor at Kaiser that afternoon and I it couldn't come fast enough.

I drove to Costco and went shopping. On my way home, Rob called screaming at me again. I had left my handbag in the shopping cart and it was at the Costco member services department and how could I be so stupid to leave my purse there? I hung up on him and drove back to Costco. By now, I knew something was wrong with me. I was shaking, confused, and scared. And I was angry with Rob-- so angry with myself for staying with this monster for so long. I hated him.

A few hours later, I picked Morgan up at school and she told me that while I was on my business trip, Rob had taken the kids to Nic's house (Nic is Rob's oldest daughter. She lived with us for a few years and was a total pot head and more. There are all kinds of stories of the awful things she did in our home which necissitated her moving out. Over Thanksgiving just a few weeks prior, Nic called Rob from the hospital for something I shouldn't mention but is highly illegal. Anyway, I told Rob to pack his things so I could take him to the airport so he could be with Nic during this dire time of need. Rob refused, saying she probably made it up. He wanted the two of us to spend the night in Salt Lake City at a swanky hotel instead. Rob sure is a GREAT dad-- in addition to being a GREAT alcoholic!). Rob had told me prior that he had been to Nicole's home and she and her rommate left drug accessories out on the coffee table. Kalie, Rob's younger daughter stopped by Nicole's home once for dinner and Nicole and her boyfriend, Nick, were smoking pot throughout dinner and she left in disgust. Based on this, Rob and I agreed that the children were never to go to Nicole's home but that they could see her whenever Rob wanted but it had to be in a neutral place, like a restaurant or movie or his mom's house. Instead, while I was gone, Rob took the kids to her house and told them both to never tell me they had gone there. I was furious because Rob broke another promise to me (how should I be surprised?) and even worse, he told the children to lie to me. (I mean, why not? Rob lies about everything and pretty much sees nothing wrong with it.)

Soon after, Rob called me to scream at me and tell me he wasn't going to the counseling session. "Of course you're not," I said. "You'll have to tell your counselor you're still a drunk and while you're supposed to be at group therapy sessions, you're at the bars and diving."

My next call was to Kalie. "Hey, Kalie, your dad this to your family when you were growing up, right? It's not just me that gets this wonderful treatment, is it?"

"No," she said. "I've lived it my whole life. My mom didn't drink for nine years and nothing got better so take that as you will."

I then went to Kaiser and met with Bob's counselor and I was nearly hysterical crying. The gist was that Rob was an alcoholic and she told me I needed to leave him, that he wasn't getting better and he wouldn't until he bottomed out and even then, he might not. And she put me on temporary work leave to allow me to gather my thoughts and prepare for leaving Rob. Wow-- I had never had a counselor actually be that forceful about any decision.

On the following Tuesday, I went to my primary care doctor. Something still wasn't right and I knew it. I insisted on a CBC panel. And that's how the doctor noticed I had some very bad anomalies. But that came a few weeks later.

Soon thereafter, it was Christmas and the girls and I were flying to Utah a few days prior to Rob coming out to join us. On our way to the airport, we ran some errands and finished up sooner than expected. We were going to be droppoed off at the airport some four hours early. We were near Target in Mission Valley and I said I wanted to run into Target and buy an inexpensive watch for the flight. No one needed to get out of the car and I'd be maybe 10 minutes. Rob didn't like that. I started screaming at me that I didn't need a watch and I needed to be at the airport early. Yes, screaming. I wanted to throw him out of the car. I gave in and started driving to the airport with my heart pounding. In my head I'm thinking, "I hate you, you fat drunk cow with the tiny penis and the shrill voice. I hate you." I finally said, in not my finest moment, and in front of the kids: "Let me remind you that I never asked you to marry me. I've asked you 100 times to move out and not once have I ever asked you to come back. In fact, every time you did come back, I was sick to my stomach about it. I don't need you and I don't need this marriage." There was silence in the car. I knew the reason he had to hurry up and get us to the airport was so that he could have drinks-- and have them FAST. While waiting in the airport, I called his favorite bar, The San Diego Brewing Company, and sure enough, Rob was there drinking. Big shocker-- I couldn't take 10 minutes to buy a watch because my sick alcoholic husband had to have a drink NOW.

When we got curbside at the airport, Rob unloaded our car and the skycap asked for the flyers' last names. "Nielsen," he said. "They are all Nielsen. That's just great!" (Rob hated that I never changed my last name or Siena's.") I said loudly, "I'll tell you what, you quit drinking and being an abusive drunk and I'll change our last names. You first, buddy." And that's how we left.

Over the next many days, Rob sent me one hateful text after the next. I was a control freak. I tried to change the Great & Wonderful Rob, I was a horrible mom, I was lazy and that's why I went on leave. Blah blah blah. I ignored them all. While I was in Utah without Rob, I realized I didn't ever want to go back to my old life and the thought of Rob coming in a few days made me feel sick. But come he did. I picked him up at the airport on Christmas morning. The site of him made my stomach clench up.

He got in the car apologetic and humble. "Will you marry me in the Catholic church if I get an annulment from Terri? I have never loved anyone like I love you and 2012 is going to be a great year. I want you to marry me in the church."

"Rob, we are not OK. I don't like the way you treat me."

"I know but it's going to be great next year. I'm going to train for a marathon and quit drinking. You'll see."

"Right," I said. "This is dejavu."

And Rob went on and on about how he was a family man, we were going to be great, I was the love of his life, it was going to be great, blah blah blah. I tuned it out.

A few days later, we were with the kids at Thanksgiving Point looking at the farm animals when my doctor called. I was highly anemic but not iron deficient. When I got back to San Diego, they were going to do body scans, more blood work, urine tests, I would see a specialist in hemotology/oncology... I almost fainted. "Should I be worried?" I asked. "Well, we don't know yet but we'll take good care of you." Oh my God, no one ever wants a call like that. The next week was a blurr of my mom and I doing research on the Internet. I was terrified. I wasn't sleeping or eating. I had pretty much diagnosed myself with Multiple Myeloma. My time spent researching drove Rob bat-crazy. He hated me obsessing about my health and I wanted him to leave me alone. I didn't want to go home for tests, I didn't want to be with him, I wanted to curl into a ball in my mom's lap and with it all away.

But we flew home to San Diego on January 1. The night prior, Rob said he couldn't wait to go home. I said, "Not me. If I didn't have to go back for testing, I would stay right here." That shocked him but I didn't give a rat's ass anymore. I hated him. He was not my friend, lover, supporter-- he was an abusive, mean, highly volatile, lying, screaming drunk.

And on January 2, I woke up and went to Kaiser for testing. Before I left, Rob wanted me to wait several hours so he could run errands and I could watch the kids. I was incensed. "Rob, my testing is more important than your errands, don't you think? Sorry, but I'm going to Kaiser." And I left. And Rob was furious. And I just hated him more. I was sick with worry, getting ready for horrible testing, and Rob was mad at me for putting my health ahead of his errands, which of course included time for drinks at the bar.

And that's the day I came home from my testing, having been told by the radiologist that my doctors thought I had cancer, and Rob came home drunk and screamed at me so loud he was spitting in my face, calling me a drama queen, stupid, lazy and on and on. I called the police and had him removed from the home. And that's the last day we lived together.

Later, Rob told me I was his trigger for drinking. Except he drank throughout his entire first marriage. Before he told me that his drinking was my fault, it was Nicole, and Terri, and his Dad's death, and work... And the list is endless.

In October 2011, San Diego had a blackout where we had no power at all for many hours. I got a call from Kalie. "Is my dad at work?" she asked. It was about 5:30 pm at this time. "No," I said. "He's home drunk. He was terrorizing me as usual so I left and I'm driving around. Why?" Kalie responded, "Because my dad told Nicole he was too busy to talk to her because he was coping with the power outage in San Diego." I laughed, "Ha ha ha. Your dad acts like he's president of the company and the whole of San Diego would fall apart without the all important Rob the Great (Alcoholic). Well, Kalie, let me tell you that your dad is not at work. He beat me home from work and he was already drunk when he got home, telling me I couldn't handle life without him with this power outage. So he was terrorizing me  and not at work." We both laughed over that. How typical. What a liar. And an exaggerator.

And that's Rob in a nutshell. Nice guy (if he has an audience anyway).

Thursday, February 14, 2013

Being sick sucks

This is my family and they are amazing. There's my two daughters, Siena and Morgan, my mom and dad, my brothers Ryan and Jason, my sister in law Nancy, and my nephew Dylan. They have supported me and the children and taken care of us and the amount of work and effort that has taken is really unimaginable. Especially my parents. If you look carefully, you'll see halos and wings on them.

My parents had the rather simple lives of retirees. My mom subbed a little, my dad volunteered at the church. They walked their dog. They travelled. They did whatever they wanted. And then out of the blue, they have to rush to San Diego to rescue their daughter and two children from an abusive home, and try and save their daughter's life. Just like that. No warning. And so three new "tenants" move into their home, take up three bedrooms and two of their bathrooms, and most of their back yard, and half their garage. And to top it all off, one of their "tenants" is hardly able to care for herself, much less two children. So it all falls on their heads. And the terror all of us were feeling was really awful. I didn't know if I would respond to treatment. The kids were traumatized. Not only were they moving two states away, but they were leaving behind their dad and dogs and friends, starting a new school and having to make friends, and their mom was sick. They asked daily if I was dying. And try as I might to reassure them that I would be "just fine", I just needed to go through some really un-fun treatments, I'm sure they could see the fear in my eyes. And, well, it was obvious that I was not ok.

So after getting the girls enrolled in their new school, my fulltime job became going to my doctor's office at the University of Utah's Huntsman Center many times a week-- some times every day. I was going for tests, including bone marrow biopsies (OUCH!!!), blood transfusions, platelets, fluids, and chemo. I was taking daily pills of chemo. My hair was falling out in clumps. Mornings were the worse. I wanted to badly to wake the girls up and feed them breakfast and take them to school. And it literally took every single ounce of energy I had and then some. I pushed myself way beyond my capacity. I would come out of my room and go up a short flight of steps and then sit on the couch for five minutes. That short walk left me breathless, heart pounding, dizzy and disoriented. When that sensation subsided, I went up another flight of steps to wake the girls up, who for the first month shared a bedroom. After breakfast, I'd drive them to school and come home and nearly pass out.

By this time, my mom would be up and checking on me, making sure I was taking my cocktail of pills, eating healthy and organic foods, and my parents were ready to take me to my doctor's visit. One morning, I was white as a sheet and they rushed me to the doctor only to find out that I was so dangerously anemic that they debated putting me in the hospital.

My parents had to do kid duty most every day after school, which included homework assistance, bath help, laundry, and cooking meals. I was simply incapable. I would mostly sit on a couch and watch Dr Phil, Rikki, Ellen-- all the talk shows that today I can hardly stomach because it brings back those memories. My poor parents! While they're in great health, they are aging and they had no freedom at all to call the shots in their life-- something they had earned the right to do.

When I had energy, I would often go to my grandparents' gravesite and talk to them. I told them that they needed to talk to God for me and tell Him that I needed to beat this disease. But when I did meet them on the other side, I needed them to greet me-- and to bring with them my grandmother Marinaro and my friends Lisa and Melanie, who both passed away far too young.

Evenings were such a relief. When the girls finally went to bed, I was just ecstatic that I made it through another day. I slept in my bedroom with the TV on because being alone scared me.

And in the mornings, I would awake with my stomach in knots, knowing that there would be hateful and evil texts from my sweet (alcoholic) husband telling me what a loser and lazy awful mother I was. It was horrid. I was living in a Hell like I couldn't even imagine and it was endless.

I remember one day I ran an infection and I was admitted to the hospital for four days. I had a pick line in my neck (a tube that comes out of the jugular vein) that was there to collect my stem cells when they would produce. I had a port in my chest to help with giving me massive chemo injections directly into major veins that also runs under my skin to my jugular. I was feeling awful from the chemo. And beyond that, I was so afraid because my stem cells were not producing and I was terrified they never would and I would have a failed transplant and that was just not good considering I needed that transplant to help save my life. So as I'm in the hospital strapped to an IV getting fluids and antibiotics, I get a text from "Rob" that said "You're a liar. You're not even sick." It's a good thing he was two states away from me or I would have been very tempted to chop off his very tiny three inch penis and feed it to the dogs.

Rob was angry with me for two reasons: 1) I left him and refused to allow him to verbally assault me any longer; and 2) he wanted me to send him money from my disability checks. He was livid that I wouldn't send him money beyond the $2,200 a month I was giving him from my company short term disability, but not sending him any money from my California disability. I got endless calls, texts and emails from him every single day screaming at me to send me money NOW you lazy stupid bitch. I'm not kidding. At the time, being as sick and anemic and focused on my health as I was, and what little energy I had left was for the children, I couldn't even think straight. I finally called my attorney and said that I'm just going to send Rob money so he'll leave me alone. I seriously couldn't take it anymore. She told me absolutely not-- that money was to take care of the needs of my children and me. So I didn't. And oh my God, when I told Rob that, the text and phone calls got even more horrid and awful. And he just loved to throw in my face that this new victim of his, err, I mean woman who wanted to meet him, had so much money that he would be just fine and she wasn't a stupid lazy bitch like me. And, of course, he blamed his drinking on me. I was his trigger. Except is alcoholism was a destroying factor in his last marriage, too, so can't blame me for that! Alcoholics and drug addicts love to blame everyone for their drinking (and deny it). It's what makes them sick, and what makes those that live with them sick, too.

Before I moved from San Diego and on the day I was undergoing invasive tests to diagnose me, and Rob came home drunk and spit in my face and called me stupid and a drama queen, I called the police to have him removed from the home. The next day, I did the unthinkable: I called his ex wife, Terri. We had a very bad relationship during my whole marriage to Rob but that angel actually agreed to speak to me and I'll forever be grateful to her. I won't betray confidences on what was said but I'll share this. I was crying and beside myself with fear and grief. I asked her: "Is it me or did he do this to you?" After a brief pause, she said quietly and emphatically, "No, it's not you. I lived with it for 19 years. He's Rob and he'll never change. He needs help and he won't get it. He'll promise but he won't do it."

Back to my family: It's been just over a year since we've moved here. They are the most giving, selfless, amazing, kind, loving and supportive family one could ever ask for. My parents have gone way above their duty in helping me fight my disease, get well, helping raise my children, and teach them values. They've given us unconditional love and stability. I never come home wondering if my parents will scream at me, disappear, or be in a hyper good mood. It's such a relief to live in that nightmare.

I know that Rob and I married much too soon after meeting. If Rob hadn't lied to me about who he was, I wouldn't have married him. That said, dating him more wouldn't have fixed anything. The only way I would've ever known real Rob was to live with him. Because Rob is a happy drunk when there's something fun on the horizon-- a party, going out to dinner, diving, or vacation. If he has an audience or he's trying to impress someone, he is a kind, great, generous guy. He wants everyone to think he's a hero. It's only if he has expectations that he becomes angry and mean and abusive and scary. If he has to do something like, God forbid, help raise a child (his older drug addict daughter included), empty a dishwasher, put laundry away, or walk a dog, he is scary. And he's lazy. Throughout our marriage he did next to nothing-- he didn't pay bills, or take care of dogs or kids, I can't remember him emptying the dishwasher once in the nearly five years we lived together, or taking the dogs to the vet, or putting a single load of laundry away. Nope-- I did all of it until the last few months when he finally started walking the dogs in the morning and sometimes making dinner. And by then, it was too late. He worked me to the bone and I gave everything to him and our home until I literally had nothing left.

And thank goodness for my loving parents who were here to pick up the pieces. Last night I was exhausted beyond belief. I was so bone tired and weary I could go no further. Yet the kids still needed to be picked up from activities, and needed help with homework, and their laundry needed to be put away. And I literally had no energy left. And my 73 year old mother did it all while I reclined on a chair with a blanket and slept. They are the personification of what truly amazing, good people are. Rob could learn a lot from them.

Monday, February 11, 2013

Rob is worse than John Edwards (the former US presidential candidate & major deuchebag)

Is there a bigger asshole in the entire world than John Edwards? The answer is yes.

John Edwards is a major prick. He was a former presidential and vice presidential candidate. His wife, Elizabeth, was fighting breast cancer and eventually died from the disease. It came out prior to her death that he had an affair with Reille Hunter and had fathered a child. He claims the affair and pregnancy happened while Elizabeth was in remission. At least John stood by Elizabeth during her horrible treatments and supported her through the end. Does that make him a good guy? Of course not-- pretty much everyone agrees that he's a complete and total asshole.

But Rob the Great (Alcoholic) is worse
But "Rob" the Great (Alcoholic) can run circles around John Edwards when it comes to the asshole factor. When I was diagnosed with my illness, Rob did not stand by me. Actually, he threatened me that if I left him, he would cancel my health insurance. Let's see... I have a life threatening illness. I am terrified (who wouldn't be?). I need to enter treatment immediately. And Rob wanted to cancel my health insurance so... what... I could not get treatment and die? And he repeated that threat for weeks until I filed for a legal separation in February, which prevented him from canceling my insurance. Rob immediately switched the separation to a divorce. I got that news as I was at the clinic strapped to an IV getting blood transfusions, platelets, and chemo pumped into my veins.

I was officially diagnosed on January 6, 2012. The time leading up to that diagnosis was a Hell I can't adequately describe. I couldn't eat or sleep. I would have panic attacks at random times and couldn't breathe. My parents were with me at that appointment. Dr. Raja came in and, full of positive energy, gave me my diagnosis and said that I was highly treatable but the treatments weren't fun, would take a very long time (maybe the rest of my life), and I needed to enter treatment immediately. My parents and I cried.

After a few hours of grappling with this news, I realized that I was leaving Rob and taking with me our two daughters, Morgan and Siena. I was going to move to Utah to heal and get well-- physically and emotionally. After four years of being belittled and screamed at by Rob-- a mean alcoholic, there was no way I could heal in his presence. I couldn't even think divorce or anything else. All I could wrap my head around was: 1) I was sick. 2) I had to get away from Rob. And Rob's response? He screamed at me, called me a loser, lazy (because I went out on medical disability), stupid, a liar and a thief. Somehow, I doubt John Edwards said any of those things to Elizabeth.

When I received my official diagnosis and texted Rob to let him know, he wanted a copy of a letter from my doctor so he could use it to go out on FMLA from his job-- NOT to help take care of me or the children, but to have time for HIMSELF. He said it was to go to treatment for his alcoholism. But after hearing his promises of getting alcohol treatment for four solid years (and knowing that he had promised his last wife, Terri, to do the same for years), there was NO WAY I was going to let him use MY illness to get free vacation time so he could drink more, sleep more, watch movies, and fish. So I refused.

We moved from San Diego on January 13, 2012. I packed up as many clothes as possible in trash bags and we drove to Utah. I entered treatment at the Huntsman Center at the University of Utah in Salt Lake City just weeks later. My treatment plan would include two stem cell transplants and massive chemotherapy in the hopes of getting me into remission. Because of the aggressive nature of my particular disease, I had about a 35 percent chance of getting into remission, or even partial remission.

In addition to my diagnosis, I was in physical pain. Just weeks prior, Rob had grabbed me too hard around my waist and had broken one of my ribs. It hurt to do anything-- stand, sleep, shower, walk, breathe... And I was dangerously anemic to the point that they wanted to hospitalize me. When one is that anemic, the brain doesn't get enough oxygen and one's cognitive reasoning and retention skills are greatly compromised. I was getting blood transfusions and platelets every few days in an attempt to keep me out of the hospital.

But that's not all... I had two young children that I needed to get into new schools and get situated in a new state. Morgan, who was not quite 12 years old at the time, struggled the most. She missed her dad. Even though she knew Rob was mean and volatile, she still loved him. She missed her friends, her dogs, her room, San Diego... I mean, this was not a pretty move. I had no time to prep the girls for moving and having their entire lives disrupted. And they were so afraid for their mom. They saw me not feeling well and oftentimes I would have to reassure them that I wouldn't die, that things would be OK, and they cried a lot. Looking back, the first many months of 2012 were a Hell like few can imagine. My parents were angels-- they made room for three new tenants, helped pitch in with the caring of two young children, and made countless trips to Salt Lake to sit with me while I received treatment. I felt so inadequate, hopeless, scared, grateful... and ANGER at Bob-- anger that he could not be a support system for me. In fact, just the opposite. The text messages I received from him got worse and worse as he called me every name under the sun and screamed at me whenever he called.

...And, he started dating again IMMEDIATELY after we moved. And he taunted me with one woman he met. She was a former JD, she had MONEY, she had MONEY MONEY MONEY. And she wasn't lazy like me. She was Jewish and had MONEY MONEY MONEY MONEY. He went on and on and on. WTF. So I did something really mature right back-- I told him I had had an affair while we were married. It wasn't true. I wanted to. I had every opportunity to do it. And I wish I had. But I didn't.

Back to John Edwards/Rob the Great (Alcoholic) comparison
So while John Edwards is a dick, Rob is meaner because:

1. Rob made fun of me during my illness.
2. Rob found a new girlfriend while he was still emailing/texting me that he wanted to support me.
3. Rob promised me and his family that he would get treatment for alcoholism. He didn't. Instead, he got a new girlfriend.
4. Rob called me a thief, liar, stupid and lazy.
5. He dropped the kids entirely. He has no contact with them at all because they are "too stressful" for him.
6. Rob threatened to cancel my health insurance.
7. Rob screamed at me that if I didn't send him money from my disability checks that he would throw all my belongings in the front yard.
8. Rob contacted his entire family and asked them not to have any contact with me (this during a time that I really needed all the love and support I could muster from anyone!). I'll get into this one later but one of his adult blood relatives (not one of his children) actually called and told me this and also told me how they all felt about Rob. That's a post all of its own.

At least John Edwards had the dignity to try and keep his affair with Elizabeth from her and he did support her through her treatments.

Where was Rob? Screwing a new girlfriend, drinking, and screaming at me.

Yep, Rob is a monster.