I got a call today from a patient that wanted to speak to one of the physicians that I support. Doc S. is soon leaving our group to move closer to family. The patient explained to me that he too was getting ready to make a move closer to family. He has been diagnosed with terminal cancer and has been given three months to live. He told me how he hoped they were wrong and he would have a year but, “We all hope for the best” he said. Doc S’s patient wanted to speak with him so that he could tell him goodbye and tell him what a wonderful and caring physician he has been.
I hung up the phone, walked into the nearest physician’s office that was empty, closed the door, and completely lost it. I cried so hard that I physically could not breathe. How do you say goodbye to people, forever? How do you tell someone that you are dying?
THURSDAY, JANUARY 21, 2010
As I left Doc V’s office he handed me a sample of steroid gel for my face along with a blood work order and said, “go down to our lab before you leave. Don’t wait and get it done at your lab at Barnes. I want to check for Lupus.” I took the script, bounced out of his office with a smile, down the elevator and started down the long hall as it suddenly hit me all at once.
What the hell is Lupus? Didn’t the little Haskell girl have Lupus? Didn’t she die? What the hell is Lupus? Lupus is cancer… No, it’s not. What the Hell is Lupus? Calm down. You’re freaking out. Calm down. Breathe. Okay, walk.
I took my order to the technician, sat down in the waiting room, outside of the basement lab that was starting to remind me of a morgue for some reason. I picked up TIME magazine and started flipping through the pages. As the technician walked in the room I notice that the magazine was upside-down. We walked down the hall into the lab and she drew my blood. I smiled and said thank you and walked back out to my car. I sat behind the steering wheel and just stared into space for a good 20 minutes, after which I stared my car and drove back through campus and parked in the garage. At least I think I did. I really had no recollection of how I got back to my office but I must have driven because my car was parked in the garage at the end of the day.
I remember brushing it off in mind several more times that day. Then at about 3:30, I began to google.
Lucy Haskell; GOOGLE SEARCH… Lucy died of diphtheria. Lupus; GOOGLE SEARCH… 90% of individuals diagnosed are women… 50 times more likely to have a heart attack… Life expectancy now up to 10 years… Prognosis looking better for woman with lupus to bear children… kidney failure… seizures… heart failure… cancer… loss of brain function… signs and symptoms; GOOGLE SEARCH… butterfly rash across nose and cheeks (check)… unexplained seizures (check)… painful or swollen joints (check)… extreme fatigue (check)… sensitivity to the sun (check) vitamin D deficiency (check)… trouble thinking and memory problems (check, check)… I began to freak out again.
After calling Doc V's office and being told that my results would not be back until, AT LEAST Monday, I called one of my physicians and begged him to look up my results. He told me that he was unsure of what exactly they meant since he was not a rheumatologist but one was positive and one was negative and he told me the names of the tests. He also told me that he did know that the one that was negative had to do with weather or not my kidneys were failing. The one that was positive meant that I had an autoimmune disorder but it was not specific to which one because there is not one definitive test to say that yes, you have lupus. I don’t remember driving home.
As I walked in the house Ben walked out of the kitchen. "Don't do that to me again. I can't believe you would send me a text like that and then make me wait all day." I did not remember texting him but apparently I sent him a text that said only, "be home. I need to talk to you."
I told him what had happened and that Doc V. was testing my blood for lupus. He grinned and told me that I don't have lupus and laughed a really nervous laugh. (He is always very level headed and always tells me I am being a hypochondriac and to suck it up when I have the flue or a cold.) After pulling out his giant book of all things medical from his miniature medical library, my husband looked at me and did something completely out of character. So much so that it scared the hell out me; more so than anything has ever scared me in my life. He looked up from the open book with tears streaming down his face and said, " Lori, I think you have lupus." I just stared at him as he sat down on our kitchen floor. Finally he stood up, grabbed me, hugged me and said, "what are we going to do?"
WHAT ARE WE GOING TO DO?
We decided not to tell anyone until we were completely sure. From the research we had done all night and the next day we realized that we may not know if I really had lupus for years. Lupus is nicknamed, "The Great Imitator" because it is different for every person and looks just like all kinds of other medical problems. If you are not have many different symptoms it is very hard to definitively diagnose. How could I look my parents in the eye and tell them.
How do say, I may be dieing, I may have 2 years or 10 years or I may not have to worry at all. I may not be able to give you grandchildren. How do you say that to you mother? To your father?
Ironically, we had already been planning on a weekend trip to Chicago for a convention at the University of Chicago on home birth and fertility. As we drove down Lake Shore Drive, all I could think about was what in the hell were we doing here.
Why did this even matter anymore. Maybe I could convince one of my sisters to surrogate for me. Maybe Ashley. Then at least our baby would look like his/her cousins. Maybe we would adopt. Why would they let someone who was going to die in ten years adopt a baby. OMG, what is wrong with me... Stop...
We stopped by the hotel while we waited for Kari to get off work.
The next day was the same. We went to lunch, we hung out. The words just would not come. I wanted to tell someone but the words, the words, they just would not come out.
We were walking back from Urban when it just came out. "If you cry, I will punch you in the face." She looked at me with intent eyes. I told her everything I knew.
Really did we know anything for sure... What did this all even mean...
Driving home Ben and I had the best and worst conversation we have ever had. Questions that no couple that has been married one year should ever have to even think about. It was good to get them out of my head though. I think it was good for him to get out of his head also.
It rained the entire way out of Chicago. Maybe mother nature felt what I was feeling.
This entrainment center is too small. It fits perfectly in this tiny condo. Where would we use it in a big house. It will not last long enough. It is not big enough to put all our kids movies in, along side our movies. Does any of this even matter? Will we even have kids? Will Ben care what size his entertainment center is when I am gone? I have to stop this... This is ridiculous.
After weeks of waiting, and freaking out, and waiting some more, I finally saw a rheumatologist that specializes in SLE. She was not convinced it was lupus. It was definitely an autoimmune disorder but maybe rheumatoid arthritis or something else. Really there is no way to tell because the only symptoms that were occurring right at that moment were muscle aches and pains, fatigue, and the butterfly rash. So, now we will just have to wait and see. Wait, write detailed journals, and see.
That damn butterfly rash. That damn thing started this whole circus. Why couldn't I just take my freaking face gel and that be the end of it. Why did he have to test my blood. So what if I didn't know. Would it even have made a difference. Maybe then I could just get on with my life and not worry about what if...
SO NOW, HERE WE ARE
It is eight months later and things are pretty well back to normal. I never even think about lupus or rheumatoid arthritis or autoimmune disorders... Well almost never...
What this whole situation has taught me. Life REALLY is short, unpredictable, unexpected, and short. We can not go through life wondering what if... What about when... What will we do... We just have to live our lives. Live them big, bold, crazy. Do the things we want. Do the things we dream. Don't think well... maybe we shouldn't... just in case... Forget the freaking "plan". Do something completely off course. Live out loud. Because tomorrow you may not have the chance.