I dedicate this post to an old college friend whose blogging and Facebook sharing has really given me strength this week to remain positive. If you can, take the time to donate to her fund Viva Vivian, she is fighting cancer while pregnant and she is a true inspiration! You also get a free, very fashionable, Viva Vivian bag when you donate $20 or more.
I hope my article inspires others to seek early detection.
This week I was diagnosed with a rare genetic blood condition, Hemochromotosis. I found out over the phone by my very lovely GI doctor. She was very reassuring telling me not to worry. Basically, my body holds on to too much iron and if untreated can develop into liver damage, heart problems, cancer etc. I was told I needed to get a sonogram of all of my organs and to see a hemotologist.
Once I hung up, I did what everyone should NOT do when diagnosed with anything.
I googled. I googled and googled and googled.
I should have stopped at the ever informative and accurate Mayo Clinic…but I did not and kept googling.
I was told my condition is known as “The Silent Killer.” #gulp #what #freakingout
So that phrase stuck with me coupled with the fear of cancer in various organs, cirrhosis of the liver (even though I’m not a drinker), and more doomsday reports.
I didn’t blog about it then because I could not put out anymore negative thought into this diagnosis. I had to remain positive (like Don Draper above). I started wearing my “Embrace The Journey” shirt around the house and on my bike rides. My positive motto for knowing that this IS my journey, and I have to embrace it with loving positive arms.
I thought of all the great people I know who have inspired me and fought cancer valiantly and gracefully (my mother a survivor included whom early detection saved). At this point, I did not have any real diagnosis of anything other than Hemochromotosis, which if caught early is very easy to live a long healthy life. I knew had to focus on those facts and not place worry into the unknown…easier said than done.
As I tell my son everyday:
Live in the present.
I was reminded how quickly our lives can pass. How suddenly you realize you may miss out on so much to come: such as having more children, going to my son’s graduation from college, and seeing him become the amazing human being he is destined to be. I thought of people close to me who went too early and how unfair that is. I thought of dreams and goals deferred. We never know when our time is up. I tried my hardest to breathe deeply. Restorative yoga and meditation really really helped me during all of this.
I felt every piece of sunlight on my skin and realized I don’t appreciate the small things enough. The simple moments of sitting around the table with my family or laughing with my friends. I realized I needed more of these moments and less moments plugged into my phone, computer, etc. just wasting life away. Since I mostly work from my computer it’s hard to not be plugged in all the time. I am so grateful for this realization.
I set my mind to focus no matter what on living in the present and remaining positive.
And so I did. I drove myself to the NYU Langone Radiology center (I didn’t want to be on the subway just in case I cried at the doctor’s office due to bad news or whatever). While that was a great idea, I should NOT have gone to the doctors by myself. Support is important, but I wasn’t thinking clearly…I was feeling incredibly strong and positive!
If you were to combine Seinfeld into a horror movie, that sums up my experience at the radiology department.
In an effort to keep the waiting room a decent experience, I watched It’s Always Sunny In Philadelphia on my computer to distract me and keep the comedy alive (great WiFi at NYU Langone btw).
After a long wait, I was told to go up to the 8th floor. Imagine an enormous NYC hospital with elevators everywhere. One Elevator has the number 8, but it won’t take you to floor number 8 it just keeps going to 9. So you try about seven other elevators, but none of those elevators have the number 8. They have 1-2-3-4-5-6-7-9. Not 8. You eventually start to doubt your eyesight, your mind, certainly this can’t be real?! So I tried the stairs. Every floor had open access… except number 8!
Stuck in the stairwell. Trying to take a test to see any indications of cancer or other diseases. I was not feeling very strong anymore. I could have really used that person to accompany me to the doctor’s office (this was not something I never realized before and therefore didn’t even think to ask the husband to come…I never bring him to well checks.)
Finally, I found the nice administrator and she apologized for not telling me the 8th floor is in an entire other building! She had someone escort me to the 8th floor, but by then my nerves were shot.
They also lost all my paperwork which at the time did not make me feel anymore comfortable with the situation (mistakes happen, but post stairwell trapping I just needed a good sit down).
I shamefully cried the entire time the poor sonographer was doing my ultrasound.
My nerves gave up, and I was all alone. The sonographer, bless her, was so so kind. There wasn’t any one reason for the crying: I hadn’t eaten in 8 hours, I had a migraine, I was being checked for cancer, plus all the crazy waiting room fiascos made for a pretty bad recipe of emotions. Not my finest moment.
I was so grateful I brought my car and did not have to ride the subway or take a cab in this state. I went straight home, hugged my family, hopped on my bike and met some of my closest friends and godson in the park for his birthday. I kept trying to not think of the negatives and was so happy to have such beautiful beings to celebrate life with.
We should celebrate life everyday.
As Pitbull says in Time Of Our Lives:
Everyday above ground is a great day, remember that.
And we forget that. Too often. Any day above ground IS reason enough to celebrate.
(sorry for the Pitbull reference, but I love pop culture)
In the end, my doctors found that my organs are in great shape.
I do indeed have Hemochromotosis, and my iron is high and must be watched to prevent future organ damage for the rest of my life. However, of all the conditions out there, this one is easy to treat and live a long healthy normal life if you catch it in time. All I have to do a few times a year is have them take blood from me (phlebotomy). No drugs, no treatments, just giving blood (they can actually use the blood for other patients).
Early Detection is key. I am truly lucky they caught this.
It’s not common for doctors to test your iron when you go in for a physical. For some reason I thought it was. I usually go in for a well check and say test everything! My iron had not been tested in 8 years. Genetic testing is only done if a doctor sees a red flag. I am so lucky my GI doctor said “Well, hey, let’s check your iron to see what’s going on.” If she hadn’t done that, this could have been my silent killer.
I am so thankful for her and all of the amazing doctors I have seen through the NYU Langone system.
I have seen some of the top doctors in their fields who even take the time to call me back on a Friday at 7pm. Even with the emotional radiology appointment, everyone who worked there was so kind and accommodating to help.
I am so grateful to have this perspective shift
and to see life again for what it is. Love and light to all of you. May you live each day to the fullest and seize each and every moment. May you hug your loved ones and forget your worries.