My life today is a miracle. A little over a week ago I experienced the most wretched 24 hour low of my illness. I went to a place that felt so dark that time escaped me and my body felt like it was not my own.
But to tell this tale properly, I must take you back to two days before the episode, June 29,2011. Nate and I had been waiting for 2 years for this date - The U2 concert! Bono received an injury last year prompting the band to postpone the concert for an additional year. We had incredible seats - as close as you can be to the stage and still have a chair. I felt physically good, there was magic in the air that night. Over 100,000 people packed into Sun Life Stadium to watch this iconic band do their thing - and their "thing" they did the way only they can. During the concert Bono sang a special song that was written for the latest Transformers movie blockbuster. He mentioned that the premier was in South Beach the following night. Nate and I of course knew about the premier. The director, Michael Bay, is from Miami and he really wanted to have a big opening here.
Nate pulled a rabbit out of a hat with the help of an amazing co-worker and at the very last minute we got tickets to the much anticipated VIP premier (where maybe, just maybe - U2 would show up). It was the evening of June 30, 2011 and it was raining out but I was feeling good and we were getting the VIP treatment. As we entered the theater we noticed that some seats were reserved and we sat two rows back from them. Nate being so tall likes the row with the extra leg room. We had been inside avoiding the rain and crowds and I hadn't spotted any celebrities yet but within moments Pat Riley and his wife walk into the room, then comes Michael Bay and Tyrese Gibson- one of the major stars of the film, and THEN in walks U2's "The Edge." No one but me seemed to blink. I didn't blink - I almost jumped up. I was shaking Nate's arm, gasping for breath, absolutely star struck! Did people not recognize him?? Who doesn't recognize the skull cap wearing "Edge?" He was two rows in front of me, engrossed in covo with Pat Riley and I didn't have the guts to ask for a picture. I have never experienced 'star-strickenness' in my life. But come on - who sits in a movie theater with a band member of U2?? They live in Ireland! They are, as my friend Andrea called them, "Rock and Roll Royalty!" So I did the only thing I could - I turned into a tween and took pictures of the side and back of his head with my black berry from two rows behind. The movie was incredible - by far the best Transformers of the series. After the movie we went to the VIP after-party at LIV (a major nightclub at the Fontainebleau Hilton). I was done for the night but the thought that I might get another chance to hang with “The Edge" was all the adrenaline I needed to keep me going. Sadly there were no more "Edge" sightings but it was another magical night out that will forever live in the memories of my mind.
The following morning was July 1st 2011, a usual Friday. I had a busy day scheduled, blood work at noon, radiation therapy at 2pm, physical therapy at 4pm and a visit with my mentor at 6pm. Ili picked me up and we were on our way. I had missed 3 sessions of physical therapy because I endured a very bad headache the previous time. I over-estimate my strength and endurance and push myself harder than I should (occupational hazard of being me). After physical therapy the headache came - you guessed it - I over did it. I'm not a stranger to headaches though; they're just part of the course. I took my Percocet and Ili and I went to grab a quick bite before visiting my mentor. I knew right when I ate an empanada and a hardboiled egg that it didn't sit well with me. I was already nauseas but I could tell that something wasn't quite right. I pushed it to the side wanting to make the most of my wonderful mentor visit. The mentor visit was incredible and it's a separate blog in and of itself (coming soon - I promise). I left grateful and with my soul nourished.
But by the time I arrived home my nausea and headache were getting out of control. Something was seriously wrong. I found myself in the bathroom (literally on the toilet) doubled over and pukeing my guts out. I'm already terrified of throwing up. This felt so violent, so forceful, so long, so agonizing but it eventually subsided. Poor Nate walked into a mess. He humbly, lovingly, and a little bit shockingly went to work cleaning up the disgusting mess. He laid me down in bed and went to watch some TV in the living room. I proceeded to throw up just as violently (but luckily not all over the floor) all night long. Nate was living in a half wake/half sleep. He was exhausted, I was exhausted. Time was escaping us. We were aware that I wasn't keeping any pain meds in my body - everything was coming out. My parents were aware that I was sick but they weren't fully aware of how bad it was because I couldn't communicate it and Nate needed a break. In his mind, this was just part of the course. I continued to throw up all day. I lay in bed and got up only to get to the bathroom just in the nick of time. I couldn't communicate to Nate how bad things were - how out of control I was; how much pain my body was in. There was just no strength in me. By the time my parents arrived at my home on Saturday night I was living in what seemed like a house of horrors to me. There was nothing left in me to come out. There were no pain meds in my body. I couldn't get myself out of the bed without violently throwing up - throwing up nothing. I felt like death. I verbalized that I thought I was dying. My parents realized that transporting me to the hospital would not be an option and they called an ambulance. I don't remember the ride over. My vital signs were stable but the pain was so excruciating that everything was a blur.
When I arrived at the hospital, the evening of Saturday, July 2, 2011, there were already teams of doctors waiting for me. They were super fast. Within the hour they had IV's in me, drugs, a CAT scan done, a chest X-Ray, and an MRI scheduled. The care that we received at the University of Miami hospital was impressively top notch. The nurses, the staff, the genuine care was beyond moving. It was the Fourth of July weekend and doctors from all of my teams came to visit and assess the situation.
I started the Fourth of July with a 3 hour MRI which showed that the tumor is swollen and that the radiation is doing its thing as it should. It also showed that I have a palsy in my 6th cranial nerve which is causing me to have double vision and blurry vision. The thought is that this is mostly due to the tumor swelling and I've been put on steroids to help combat this. The doctors are hopeful that this may resolve on its own but they have always been very concerned about my vision because the tumor in the head area is very close to the optic nerve. For now, the plan is to give it a month and see what happens. For me, this is a game changer. Up until now, I've had to go to radiation, take drugs, do physical therapy, etc. But considering all that is going on, I've been perfectly "normal." I no longer feel "normal." I can only see up close. I have to close one of my eyes to not have double vision and I can't perceive depth, I can't see from afar. It is a constant reminder that I have a serious illness - there is absolutely no denying it to myself now. I just can't escape it. Truth be told, it's made me cranky and frustrated. I've verbally complained about it - something I had never done until now. I can no longer see the world as it should be seen through my eyes - it's such a strange out of body feeling. Whenever in my life I have felt out of control, I have a recurring nightmare that I am in a car and I can't see the road clearly. I can't get full control of the car - things spiral - and even though I don't crash I'm so afraid. That's exactly how the road looks when I sit in a car now. It boggles my mind. But before I get too melodramatic, this is not a permanent condition. If after a month, it does not reside, I can have either a small surgery or get glasses and correct the problem. One way or another I'll be back to pretending I'm "normal" again in a month.
I was discharged from the hospital on the evening of July 6th without my vision but with my steroids, pain meds, and the love and support of my friends and family radiating gratitude through my spirit.
The morning of July 7th, as I was at the eye doctor appointment Nate sends me a text that his mother has been hospitalized. They think she suffered a stroke. How could this happen? How could this happen to him? Who has the stress of their fiancé in the hospital only to have things resolve and then their mother sick?? I wanted to jump out of my skin; to comfort him, to comfort her. His parents live in Colorado and she was transported to the ICU. Meanwhile Nate's birthday is July 9th. It's his birthday weekend! His fiancé can't see and his mom is in intensive care. Life just knows how to throw curve balls.
I wanted this birthday to be so incredibly special for him. Nate is my rock. He has had to endure more than his fare share and he does it so graciously, so humbly, so full of love and devotion. I can't be grateful enough for the angel that he is in my world. Friday night I took him to dinner for a pre-birthday celebration. I can't taste food anymore but he really enjoyed himself - score. Saturday, I treated him to a little clothing shopping spree and bought him something he has been wanting for years -literally - a coffee maker. Every time we go to Target, he looks at all of them and has never purchased one. He's over the moon with his little coffee maker - score. Saturday night, we met up with our friends, Aura and Dennis, for an incredible dinner and much needed friend time. They are the type of friends that fill your soul with love and goodness. We are incredibly lucky to have them as part of our lives - another score. Then yesterday, Nate and I went down to the Standard Hotel and pampered ourselves all day long at the spa. It was an unbelievable day! It's Miami Spa Month and they were all booked out of treatments. We had been on a waiting list all day long. After much diligence on my part we managed to get two incredible massages and scrub downs at 9pm AND two extra day passes because our treatments included a bath and they were closing at 10pm. We had already had our bath for the day though - it was one of our first indulgences - with Milk and Honey! They day passes alone are a $160.00 value! What a huge score! A very special thanks to The Standard Spa in South Beach for making our day and experience so amazing!
But the very best news was yet to come. Nate's mom was getting out of ICU! She is finally responsive and he even got to speak to her on the phone yesterday. He is heading out to Colorado this week to be by her side. We still do not know what is wrong with her. They are currently ruling out an infectious disease and then they will do another MRI. The hope is that this is not a brain tumor. We are concerned because she is having swelling and spasms to her brain. I so wish I could go with Nate to be with his mother but unfortunately I can't interrupt my radiation schedule. I will be there in thought and spirit and prayer. I ask that this wonderful community that has been so loving and supportive of all that is going on with my life please also pray for her. Keep her in your thoughts so that she may feel how much we want her to get better. She is an amazing woman that I can't wait to cherish as my mother in law for many years to come.
And so today, Monday, July 11, 2011, I have radiation at 2pm and I will officially have passed the halfway mark of this second round of radiation treatments. The weekend was a huge success. My body is very weak and thin and my neck area is a little burned but my spirit and my energy level is extremely high. It’s the steroids. They make me feel invincible. I have so much energy that I don't know what to do with it. I don't need to take any oral narcotics thanks to my nerve pain meds and the steroids. Unfortunately the drugs do have about a zillion negative side effects but they don’t seem to really affect the body until taking them for about a year. They are a necessary tool in my arsenal right now and I am grateful for how good they make my body feel and the energy that they provide me with.
My life today is a miracle. If you would have told me that I would feel the way I do today after the way I felt just a tiny moment ago, I would have thought it impossible. The bump in the road was very scary. But I made it out the other side. The other side is beautiful. I’m extremely emotional for the love and support that continues to surround every moment of this journey. I’m a total cry baby again all the time but it’s a good thing – a healing thing. Thank you angels, friends, and supporters for your healing energy. I am so in touch with your love. It has rejuvenated me with the strength I need to get through this second half of treatments. Thank you from the bottom of my heart, soul, and spirit!
Mom is on radiation duty today. I can’t wait to see her!