It's been a while since I wrote last. Many people think the worst when I don't post anything for a while. I can understand that. It takes a lot out of me to write. I will start off with some photos and updates of what we have been up to lately.
It's a busy birthday time for the Howell's. Ava's birthday was on Tuesday and she turned nine. We went out to dinner did presents and had ice cream cake. We had a great time celebrating and are looking forward to her party this weekend. Happy Birthday Ava! We love you!
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| Birthday Girl |
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| Ava & Daddy |
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| My little love! |
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| Family <3 |
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| Birthday Cake |
My birthday is on Friday. Mike and I celebrated early due to his treatment schedule. We went out with friends last weekend. It was a fun time. First time in a long time where it felt normal to be around our friends. He got to hang out with the guys and I hang out with the girls! Thanks to all of you who could make it.
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| ; ) |
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| My BFC ; ) |
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| At a friend's fundraiser |
We spent Easter Sunday at brunch with The Lanza's and the Howell's. Mike was very hungry that day which was great to see. He helped himself to many plates of food :)
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| Easter Brunch |
For those of you who are local... our good friend Kc Godin is hosting a 45's Tournament to benefit Mike's Fight. There is still room to sign up but you must do so soon! If you would like to register his information is on the flyer below. Hope to see you there.
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Today marks treatment number 45 for Mike. It has been 1 year and 7 months since his diagnosis. There have been a lot of emotions lately. We're thankful that he has been beating this monster for this long but it also makes us very scared. We're scared because he has outlived the average person with this disease and he has outlived his original prognosis of 10 months. We're scared for the day we find out his next scan comes back bad. We're scared for when there are no more treatment options. We have been moving through the motions for so long it feels like nothing bad will ever happen. It feels like to keep Mike well and here we have to sacrifice him having treatment and not feeling that well but in the end it means he will be here forever. At this point I'm sure he would agree, we would prefer those horrible treatments where his body is poisoned with chemo if it meant keeping him here with us.
I don't focus on the prognosis like I did when I first heard it. I have learned along the way that a prognosis doesn't mean a whole lot in that moment. I used to think it was a time sensitive death sentence. Oh man I was wrong to think that. It's easy to get lost in the numbers and words like death. I know all the people I've meet through this journey feel the same... they harp on the information and it makes them literally sick. What I have learned through out this all is that every person is different. Every tumor is different. No two people have the exact same reactions whether it's a good one or bad. My lesson for all is don't get too caught up in the prognosis. It's an estimate. There is no equation that knows exactly how long a patient has. You have to remember we are all dying... Every single one of us. We have all heard the phrase you could get hit by a bus tomorrow... any single one of us. For all my caregiver friends, patients and everyone else... don't get caught up on the prognosis. Don't use your energy that you consume yourself with worries instead flip it around and use that energy on making memories with your sick loved ones. Instead fill your mind and heart with happiness, laughter, smiles and precious moments. Be with them. Be in the present. Get off the internet and get off the damn phone. You don't want to waste the time that you have with them now.
Many people know chemo makes you sick but they don't see first hand how bad it really is. Here is a day in the life... We spend on average 8 hours a visit at Dana Farber between lab draws, appointments, chemo pumps, and iv drugs. Mike sleeps in the chairs in between appointments. Treatment days get to him. He anticipates the anxiety that overcomes him when he walks into the building. Even the car ride in is silent. It's hard to recognize him and who he is on treatment days. We subconsciously hold our breath while we wait for his doctor to come in the room every time. Waiting to hear his lab results. He maintained his weight this week... check, his labs came back good... check, his symptoms were managed this week... check, he's good to get chemo this week... double check. We always try to get him a bed. Mike just can't do chemo in the chair. It's uncomfortable, it doesn't push back far enough, and he doesn't like the curtain separating him from everyone else getting injected with their poison. When he has a bed he can relax and after a few short awkward hours of rest Mike is all set to go home. He peels himself off the bed very disorganized and nauseous. We make our way to the car sometimes I'm pushing him in a wheelchair other times he stumbles through the halls with me holding his arm while he clenches on to the puke bag. More so often he dry heaves the whole ride home while I frantically look at the road and back at him as I weave in and out through the city to get him home and comfortable. Sometimes I don't even remember driving home. Mike falls asleep while I turn up the music to drown out my bad thoughts, to drown out my silent tears and everything else around me. I hate those drives home from treatment. I get a lump in my throat that hurts. Sometimes the tears fill up my eyes and I have to squint them away. They become magnified from all the city lights and dance around the highway. I hate knowing how sick Mike will feel the next few days. Once we're home he barley has the energy to get out of the car and into the house. He usually goes to the couch to fall asleep after taking his nightly concoction of pills and blood thinner shot. I wake him up later to go to bed for the night and into hibernation for the next few days. During the night he sweats out the chemo, soaking his clothes and pillow. He usually wakes up many times through out the night to use the bathroom due to his 2L of iv fluids he recieves. He never gets a good nights rest after chemo. The next day he stays in bed sometimes till noon. Once he gets up he makes his way downstairs for his 1 of 2 daily blood thinner shots and then proceeds to choke down his daily morning concoction of pills and heads to the couch for the day. I soon creep in acting like a waitress trying to take his order and get him to eat. Some days I'm successful others I'm not. The barrel is always close by for when he gets sick and sometimes he does. He doesn't have energy to do anything. He barley eats, he's fatigued sleeping on and off. I monitor him for the next few days for fevers from the chemo. When he sits there, sometimes by himself, not feeling well his mind wonders. He thinks about the worst. What his life has become, how it will end, becoming sicker, he thinks about Ava, myself and our futures. These thoughts are just as toxic as the chemo... I go into auto pilot mode. Cleaning the house, running errands, and everything else in between. I stop for snuggles and kisses when he's awake. Subconsciously I'm trying to keep my own mind and body busy. Lately Mike's mind has been down and depressed. He feels weaker. He feels like he won't be around much longer. It feels like a dagger to the heart that is then ripped through my stomach. It never gets easier hearing these painful words coming from my husband. I've become so numb lately. My emotions are raw, my heart aches. We bargain with ourselves constantly. Why him, why us, why not someone else? When people ask how I am doing lately I say we're hanging in there. When I say this I literally mean hanging, I want to let go. I want to throw my hands in the air and scream I don't want do this, I don't want Mike suffering. I want to take it all away I want to heal him. I'm not fine, he's not fine, our daughters not fine and our families aren't fine. I'm tired. I feel less than human. I don't think straight and I never feel right. Days blend together. My mind doesn't work like it use to. I can't remember things and I hate it. I lay in bed every night fighting my thoughts away. Wondering what we did wrong to deserve this. There are no answers to find and that makes it worse. We just want to know why? I'm sad, broken, hurt, scared, exhausted and some days I don't know how to keep going. But yet each morning I open my eyes, I hesitate and pull my self out of bed. I suit up and I do what has to be done for Mike, for my family and for myself. No matter how hard things are right now I am so thankful that Mike is here and he is fighting. I refuse to let myself think I ever have to do this life alone some day...
Dear Cancer,
It may seem like you have control in my life right now, but you really don't
Your presence only makes me stronger, braver, kinder, wiser
I choose how I think, what I speak and how I love
You will never be able to touch those things, NEVER
