One of the most difficult things that I have found about dealing with all that is happening to our family (and I mean the cancer) is the frustration of having to watch Elisa go through it. The physical side effects of the drugs are difficult enough to deal with never mind the mental side effects that the diagnosis and exhaustion bring with them.
So the last thing that we were expecting (or needed) was another diagnosis of another disorder. And one would think that the odds would be on our side at this point. But clearly someone thinks that we are really way too strong and that someone is looking to see how much we can really deal with. 'Cause guess what? Wait for it... Elisa has epilepsy! "What the fuck?" you say! Well, I say it too. In fact, even the doctors say it. It is always fun to see doctors break their clinical composure. Sorry that it is me writing again, but I think you may have guessed by now that Elisa is dealing with a lot and is not up to writing about it just yet. So you are stuck with me. So here is what has happened.
About two and a half weeks ago Elisa and I were enjoying a calm moment together sitting on the couch towards the end of the day. I was in my last week of radiation treatment so had spent the majority of the day sleeping. We had been chatting about the Oprah episode we had just watched and Elisa got up to go to the bathroom. After about a minute, I heard the bathroom door slam and the trash can rattle. I called out to Elisa but there was no answer. I called again loudly and still nothing so I jumped up and rushed to the bathroom (very happy to live in a small apartment at that moment so that I didn't have more than 20 feet to travel). I found Elisa on the bathroom floor having a seizure. I still find it difficult not to start crying when I recall that moment. It is one of the most terrifying moments of my life. Luckily, I had read up on what to do just days before. Unfortunately, there is not a lot that one can do. So I cradled her head in my lap - making sure that she was turned on her side and held her. I called 911 and her mother. Eileen was out buying some groceries for us and was near by. The seizure lasted for what seemed like an eternity, but in reality was about 3-4 minutes. When she started to come out of it she was very disoriented and was trying to stand up with great determination. So I carried her to the bed to lie down and tried to explain that she had had a seizure. This was very confusing to her. She thought that I was confused and was talking about the seizure she had had in April. Elisa's mom arrived and then the paramedics were on the scene as well. So, again my wife was off to the hospital. They really should have a punch card for frequent visitors. I think we would already be getting our free hospital stay by now if they did! And once again I was stuck not being able to be with her because my stupid cancer.
A few hours after being at the hospital, Elisa had a second seizure. This time she severely bit her tongue. The worst damage to a tongue her neurologist has ever seen. It still has the imprint of her teeth in it today. I am going to truncate the story of the hospital stay. She was in the hospital for four days and I only got to visit her once briefly on my way home from my final radiation treatment so everything else is secondhand info. Elisa was under observation (via 24-EEG and 24-hour video monitoring) the whole time. The final out come is that she has Juvenile Primary Generalized Epilepsy. Juvenile refers to the age of onset. Elisa had one seizure at 9 years old. The primary part means that she was born with it. Generalized refers to the fact the seizures do not originate from one spot in the brain; they fire from all over the brain.
So why the flare up now? Well, they believe that due to the chemotherapy combined with sleep deprivation, exhaustion, stress and perhaps some hormonal influences as well as the other medication she was on and off of that her threshold for seizures has been greatly reduced. So now she is in the process of having to slowly incorporate news drugs (as some of you may already know she was on anti-seizure meds due to the seizure she had in April - they have doubled the dosage but are gradually switching her to a new drug to alleviate the side effects that are rare but, of course, she is experiencing). It also means new restrictions in her life until we are sure the new medications are working to control her epilepsy. Some of the restrictions include no baths for six months, no driving for six months, no swimming alone for six months, etc. It is a lot to add on to what she was already coping with. But may I just take a moment to say how amazing my wife is and how proud I am of her courage and in awe of her strength I am. She is as funny as ever! As feisty as ever! And as caring and giving as ever. Of course, all this is not easy to deal with, and, of course, we curse about it and cry about it. But she handles it with such grace that most people would never know the burden she bears. She is a truly amazing woman. Our sixth year wedding anniversary is this Sunday, but she has showed me a lifetime of courage and strength and laughter!
I would also like to mention and to thank a few more amazing people. Elisa’s mom, Eileen, of course, for not leaving her side at the hospital for almost 2 days. Her incredible bosses Frank and Aaron who showed up at the emergency room within an hour and ran relays so that one of them could keep an eye on Elisa and grab Eileen who was trying to get cell service in front of the hospital and brought food to Eileen and Donna at midnight. Her father, Al, and stepmother Lynda and "Aunts" Donna and Bonnie who also helped manage the emergency room nightmare. Her wonderful friend Melanie for having her babysitter watch her three kids so she could sleep in a chair over night at the hospital with her. The amazing Betsy (the incredible photographer) who flew in to stay for four days - the first two being in the hospital sleeping on a skinny fold up mattress with all her luggage in tow since she took a cab straight from the airport. Maia, Lara and Rachelle for taking care of Sadie for those four days since I was too weak to do it. Our dear friend and neighbor Amanda for checking in on me everyday. Thank you also to Lorin who came to stay with me the first night, busted foot and all. Also, to all of the wonderful army of friends that called and sent messages and prayed and sent healing energy and good thoughts to help Elisa and myself get through those tough days. It seems the darker the day, the more light I see there is in our lives. Thank you all! We love you.
I have also added some new pictures of our darling Sadie to the slideshow. She is just such a remarkable little girl. She uses "please" and "thank you" and is even speaking short sentences in 3 languages! There are so many wonderful stories to share about her, but I have run out of steam. The pictures will have to do for now. I will try to get some of the stories about her up here soon.