EVERYONE NEEDS TO BE UNDERSTOOD

EVERYONE NEEDS TO BE UNDERSTOOD

I know it's been a while since I've blogged about anything, so I'm starting with an update on Tom.

TOM UPDATE:

As you may or may not know, Tom began treatment for his stage 4 Renal Cell Carcinoma at the end of August 2015 after his surgery in early July.  He was accepted into a clinical trial through Memorial Sloan Kettering Hospital and began a 2 drug immunotherapy treatment plan.  Every 3 weeks, he would receive an infusion of two different drugs.  After 4 treatments (12 week), one of the drugs was taken away and he continued to receive treatment of one immunotherapy drug every 2 weeks.  I know, its confusing.  After his first 4 treatment he underwent a bone scan and CT scan which showed the tumors had shrunk significantly.  So it seems as though the immunotherapy is doing its job.

Recently however, he has begun to notice several side effects.  Because immunotherapy activates a patients immune system to fight the cancer, he was warned that one of the side effects was the possibility of developing an autoimmune disease.  It seems as though Tom has developed psoriatic arthritis and sensitivity to light which is effecting his eyesight.  He had an outbreak of psoriasis on both legs and his knees are quite swollen and painful, making it difficult for him to walk. Obviously, he hasn't been running and he is just so bummed out over it.  On top of it, the radiation he received in early August for the tumor in his tibia bone seems to have caused soft tissue damage to the leg. He tried running a 5k in December and ended up on crutches afterwards. So running is off the table. Since there aren't many treatment options available to him, he has to either continue treatment and deal with the side effects or leave the clinical trial.  So, he continues to receive treatment and he continues to deal with the side effects.  *UPDATE ON THE EYE:  Tom recently visited an eye doctor because his eye situation continued to deteriorate.  Turns out that he has an abrasion on his eye.  There are several possible causes, however the doctor believes the immunotherapy may have dried his eyes out so much so that it caused an abrasion.  She put a special contact lens into his eye so that it would protect the abrasion and he had to use antibiotic eye drops for 24 hours.  He then went back to the doctor and had the contact lens removed.  Upon re-examination, the abrasion on his eye healed significantly.  He'll continue using the antibiotic eye drops for 7 days and be re-evaluated again.

IF YOU WANT TO HELP SOMEONE, JUST TRY AND UNDERSTAND!

So far, one of the biggest lessons I've learned through this journey is discovering who is really there for you.

The ones who are truly there for you make their presence known.  They're the ones who proactively call or text to see if you need anything from the grocery store.  They've offered to drive Tommy into Manhattan for his treatment.  They've offer to drive our daughter to school if I'm at treatment with Tommy. They've meet us for lunch on a random day, just to spend time with us.  They're the ones who leave a tray of food on our doorstep so that I don't have to cook dinner. Or they text me every other Tuesday like clockwork, just to see how Tommy's treatment went.

A friend of ours, who herself had a very difficult battle with cancer, came over to visit and openly shared her story.  Her journey, her battle and her inner strength was the most amazing source of inspiration for us. It was her way of making sure we know she is there for us. She understands.

So you see, you don't have to cook, clean or go grocery shopping if that isn't your thing.  But there is another way you can help; just be present and try to understand.  Understand that they're swimming through some very stormy waters of life. Understand that you may not get a favor returned to you anytime soon.  Understand they may be experiencing something terrifying to them.  Understand that they see things, changes, that you don't see and you don't know about.  Understand that they may not want to voice every detail of their thoughts and fears.  Understand that the storm has changed them. Understand that they don't need to hear your platitudes. Understand that saying things to make yourself feel better doesn't necessarily make them feel better. Just try to understand.

If you're close to someone and you want to help, here is what you can do: First, do not say "if you need something, call me". Odds are they're not going to call you because most of us don't like requesting favors. Instead be proactive and choose something that you can, and more importantly, want to do for them. "Can I drop off some home made chicken soup"? "Do you need anything from the grocery store"? "Can we meet for lunch/dinner next week"?  "Do you need a ride to the doctors, I have the day off".  And if you aren't so close that you feel comfortable becoming physically involved, that's okay too! A simple text, email, phone call, fb message saying "I'm thinking of you" is enough to warm someone's heart.  It lets them know that you're present and you haven't forgotten about them. A friend of mine from the YMCA said "I want you to know that I think of you so very often these days".  Warmed my heart.

In the end, I think the most important and gracious thing you can offer someone is time and understanding.  Just try to imagine yourself in their place and feel the stormy waters they're navigating through. Placing yourself in someone else's position is the only way to understand them. And lets be honest, we all have a need and desire to be understood. So be present and try to understand.