A good friend of mine asked how I was doing yesterday. It was easy to respond to her honestly and openly, that although I was having a decent day, this weekend had been really hard. I went on to explain that I had noticed a kind of trend or cycle in my life of several good days followed by 24-48 hours of uncontrollable crying and not wanting to get out of my pajamas. I had been trying to maneuver these down times for the weekend, so it didn't effect work, but I was at the mercy of my grief most of the time.
She also asked how things have been. Now, most people may feel like this was a redundant question to "how are you?" but I knew she was asking how people have been around me. I smiled and rolled my eyes. Death is hard and I realize that most people don't get a guide for grieving. I also realize there is no guide to how to interact with those people who are grieving. We are all doing the best we can at any given moment. I will, however, give a few pointers to people, just in case you were wondering.
1~ At this point (almost 4 weeks post death) if you haven't seen me don't say, "I'm sorry for your loss." People seem to do this in a very breathy voice, which adds to the dramatic nature of the question. It basically feels like a slap in the face and you screaming at me "IN CASE YOU FORGOT, AVI'S DEAD!" It interrupts the few precious moments when his death has moved to the back of my mind and I am getting a little peace. I can feel the blood drain from my face as I struggle to regain my composure and try not to cry. Especially in social situations, this is not pleasant.
OPTION: Please feel free to simply state, "It is great to see you!" *Please try to keep your voice as normal as possible.*
2~DO NOT touch me. No hugs, cheek kisses, shoulder pats or arm rubs. This goes against what people know of me, I am a huggy person. Right now though, my skin feels like it is crawling about 90% of the time, when I am around people or in social situations. I even Googled it to find out what is wrong with me. It is anxiety and it probably isn't going away anytime soon. I'm still getting used to Avi not being with me and going out without him, which has me feeling socially awkward and anxious. I'm not one to be a slave to this anxiety and frequently push the boundaries of my comfort level because that is the person I am, but help me out people...don't make it worse. Respect my personal space. If I'm feeling it, I'll hug you.
OPTION: You can always ask for a hug, but a huge genuine smile works just as well.
3~ The "Can I do anything?" and "What do you need?" questions. These questions are said with more love and so much genuine need to feel proactive at a time when we all feel helpless, it breaks my heart to not give an easy answer. Seriously, unless someone has a magic wand or fairy dust stashed away in a closet or drawer somewhere, and it would make all of this seem like a bad dream and he would be back with me, healthy, these are not the questions to ask.
OPTION: Offer up what you are willing to do, it takes the pressure off me. I have friends who are great about getting me out of the house. They simply say, "Let's go to dinner. Then we're going sledding." Two activities that start to build new memories and still give each other support by being together during this time. Others know when I need chill time at home and call to say, "I'm coming over, bringing the dog, bringing a movie, and we'll order Mexican." or "Hey lady, let's have lunch."
No one gave me a manual, and trust me, I looked. No one told me how hard it would be the first couple of times I would instinctively call to see how he was doing during the day, only to realize he was gone. No one said how hard it would be to cancel his phone, or read his death certificate, or go to bed without kissing him goodnight. Most importantly there is no guidance for others on how to interact with me in a way that is appropriate, supportive and loving while also honoring a person's instincts. My hope is that this helps us all.
Avi,
It just about killed me to cancel your phone today. Like I was making you die all over again. Then I couldn't figure out your "favorite childhood pet" question online and it just about broke me. It makes me wish I pushed you more to do the "business" stuff. Instead I'm glad we had the time we did, like when we spent the night playing Mad Libs and you did the Yoda voice.
I miss you more than I thought possible.
All my love,
Shawna
Tuesday, February 8, 2011
Thursday, February 3, 2011
Our Girls
I was up early this morning, watching as the sun came up, casting shadows through my bedroom, listening to the cars crunch through the ice as people started their day. I had gone to the eye doctor the evening before and come home with numbed and dilated eyeballs. I was marveling in being able to see again and planning my day. I was also enjoying the two little balls of warmth that lay on either side of me, wanting attention.
Indiana, our first dog, was my "single lady" dog. I got her when I decided that I was tired of looking for Mr. Right and was happy with how I was...Avi showed up a year later. I knew he was the one when Indi switched alliances and became "his" dog before we had even moved in together. Traitor. She is the favorite amongst well...everyone. Although trained by me, she is very much a reflection of Avi's personality. Even tempered, loving, kind, and not afraid to stand up to a bigger dog if she feels someone she loves is threatened.
We decided shortly after Avi's first BMT (bone marrow transplant) that we would get a second dog. Hadley, was picked from two litters of about ten puppies. Avi picked her. I wanted a boy. He looked at the pictures for about two weeks and decided she was the one. I left it up to him because I had picked out Indi and I wanted this to be "our" dog. We drove to the other side of the sate on a "camping" trip to get her (another story, another time). She became my shadow and Avi's favorite photography subject. She also drove us crazy at times when we didn't think we could handle anymore with Avi's cancer coming back, doing another BMT and then finding out that didn't work and he was terminal. She probably made our marriage stronger because raising a puppy was one of the most normal things we had done as a married couple in the past year. People think she is crazy, loveable, but crazy. People thought we were crazy...maybe we were.
I think we were smart. When we found out Avi was terminal, I instantly went into planning survival mode. What could I do to survive after he was gone? What would I need? What would help me cope? I formed a list of what I thought would be helpful during times when things would feel so sharp...so raw. I needed him to do a bunch of stuff to help me. Stuff that never got done. Stuff that now, seems so unimportant. I realized this morning, he didn't need to do anything. He left me with the girls. Our two "kids" that cuddle with me, when I'm having those raw moments. Two warm bodied reminders of the wonderful life we had and how full it was, even in the short time we had it.
Avi,
Thank you.
Shawna
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| Indiana (Indi) |
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| Hadley |
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| Photos by Avi Teres |
I think we were smart. When we found out Avi was terminal, I instantly went into planning survival mode. What could I do to survive after he was gone? What would I need? What would help me cope? I formed a list of what I thought would be helpful during times when things would feel so sharp...so raw. I needed him to do a bunch of stuff to help me. Stuff that never got done. Stuff that now, seems so unimportant. I realized this morning, he didn't need to do anything. He left me with the girls. Our two "kids" that cuddle with me, when I'm having those raw moments. Two warm bodied reminders of the wonderful life we had and how full it was, even in the short time we had it.
Avi,
Thank you.
Shawna
Wednesday, February 2, 2011
Widow
I am a widow. It is something I have practiced telling myself over and over the past few days. This may seem as some form of torture and to a certain extent it has been, that constant reminder that he's gone...DEAD. It has also been therapeutic in that it reminds me that all of my almost Bi-polar highs and lows have a cause, a reason, a purpose. I'm at the beginning of healing. (Healing kind of blows.)
Reminding myself that I am a widow also gives me insights into how I've viewed other people acting during their grief. I get it. I get the need to purge, purge, purge...my bedroom, my house, my life. The purging isn't to get rid of any traces of the person you love. It serves two purposes. One, being the need to cleanse after the messiness of death. Death is messy, whether it is peaceful or not. Avi's death itself was not physically messy it was quiet and peaceful. He simply stopped. What was left after that is urinals, bed pans, medications, sheets you never want to look at, and the memories you can't erase from your mind. I find memories of Avi's death the most messy. Everything has a memory and some are not ones you want to recall. Everything I look at, seems to pull me back to a place that I'd rather not associate with my husband and the time we spent together. This brings me to the second reason to purge...EVERYTHING is a reminder that person is gone and when you are constantly searching for mindful peace, that slap of reality becomes very unwelcome.
Being a widow kind of feels like going through withdrawl from some kind of drug. You have this love, this all encompassing love...and then it is gone. Maybe it is different for some people. Avi and I had a very unique friendship/relationship not only because of enduring the cancer the past few years but because, as my BIL said, we were kindred spirits. We got it about the other person, we balanced each other. As amazing as the people are in my life (and let's face it I have one of the strongest, most diverse, loving, powerful support systems anyone could possibly be blessed with) it just isn't the same as if he were here guiding me through this time. The hugs aren't the same, the listening isn't the same, and the advice will never be his. I get why some people seek another relationship so quickly after the death of a partner or a spouse. They want that feeling again. That one person that gets it, the intoxication of love. I get wanting that feeling in your life again...still. I want it, but I'm not ready for it and I won't be seeking it, but I get it. I also get there will never be another Avi.
Did I mention healing BLOWS? It has been three weeks today that Avi passed and I feel like crap. I don't know what I expected to feel like, but as much as I prepared for this, it feels just as hard as the day he died. A wise woman told me, last night, that I need to change my routine. Even if it is only a little. Trying to keep the same routine that I had when Avi was alive isn't going to help me in his death. Things are not the same. Life is not the same...I am not the same. I think she is right...OK, I know she's right. So, I'm going to work on changing my routine and not being so much of a hermit. Go out and seeing people, instead of trying to stay at home. Reclaiming the life that cancer robbed me of, the life I know Avi would want for me.
Avi,
Oh honey, I want Spring. I want to see the flowers you picked out bloom. I want to garden and to be outside with the dogs. I want to feel warm instead of constantly cold. I want to sleep with the windows open.
Damn I miss you.
Shawna
Reminding myself that I am a widow also gives me insights into how I've viewed other people acting during their grief. I get it. I get the need to purge, purge, purge...my bedroom, my house, my life. The purging isn't to get rid of any traces of the person you love. It serves two purposes. One, being the need to cleanse after the messiness of death. Death is messy, whether it is peaceful or not. Avi's death itself was not physically messy it was quiet and peaceful. He simply stopped. What was left after that is urinals, bed pans, medications, sheets you never want to look at, and the memories you can't erase from your mind. I find memories of Avi's death the most messy. Everything has a memory and some are not ones you want to recall. Everything I look at, seems to pull me back to a place that I'd rather not associate with my husband and the time we spent together. This brings me to the second reason to purge...EVERYTHING is a reminder that person is gone and when you are constantly searching for mindful peace, that slap of reality becomes very unwelcome.
Being a widow kind of feels like going through withdrawl from some kind of drug. You have this love, this all encompassing love...and then it is gone. Maybe it is different for some people. Avi and I had a very unique friendship/relationship not only because of enduring the cancer the past few years but because, as my BIL said, we were kindred spirits. We got it about the other person, we balanced each other. As amazing as the people are in my life (and let's face it I have one of the strongest, most diverse, loving, powerful support systems anyone could possibly be blessed with) it just isn't the same as if he were here guiding me through this time. The hugs aren't the same, the listening isn't the same, and the advice will never be his. I get why some people seek another relationship so quickly after the death of a partner or a spouse. They want that feeling again. That one person that gets it, the intoxication of love. I get wanting that feeling in your life again...still. I want it, but I'm not ready for it and I won't be seeking it, but I get it. I also get there will never be another Avi.
Did I mention healing BLOWS? It has been three weeks today that Avi passed and I feel like crap. I don't know what I expected to feel like, but as much as I prepared for this, it feels just as hard as the day he died. A wise woman told me, last night, that I need to change my routine. Even if it is only a little. Trying to keep the same routine that I had when Avi was alive isn't going to help me in his death. Things are not the same. Life is not the same...I am not the same. I think she is right...OK, I know she's right. So, I'm going to work on changing my routine and not being so much of a hermit. Go out and seeing people, instead of trying to stay at home. Reclaiming the life that cancer robbed me of, the life I know Avi would want for me.
Avi,
Oh honey, I want Spring. I want to see the flowers you picked out bloom. I want to garden and to be outside with the dogs. I want to feel warm instead of constantly cold. I want to sleep with the windows open.Damn I miss you.
Shawna
Sunday, January 30, 2011
A week re-cap
I realize I've been slow to update everyone this week. Just so you know there are four drafts in my box that I started but couldn't quite get finished. It was a hell of a week.
I was anxious to go back, because I knew the routine would be good for me. My Monday started out with a six year-old walking out of school and before he even said "hi" I was greeted with "I heard about Avi. I'm sorry. It is okay to be sad." The things kids say, right? He was honest in his questions and as I had already done a check-in with his parents, I knew that I could answer him honestly or not answer him at all. The subject was continued while waiting for the trolley and then dropped for several days. The great thing about kids, their honest. He never tried to step around my feelings, he was curious, he gently made me talk about it in a way that was more comfortable than most of the adult conversations I had in the past two weeks. I'm really grateful that it happened that way.
Then snow happened. My supposedly easy week turned into three days of my doing overtime. I love being a nanny, I hate when school is canceled! It made me tired and grumpy and I didn't want to do anything when I got home, but cry and sleep. I ignored the dishes, the laundry, the dogs...well not really the dogs, Hadley would never allow it, but I wasn't my usual playful self with them. I wanted to sleep and never wake up. It so sucked.
Grieving is hard work. It drains every last bit of energy from me and right when I get a moment of peaceful mindlessness, my stomach drops down to my toes as I realize HE'S GONE AND HE'S NEVER COMING BACK! It is awful, the tears come, the memories flood in and I get angry at him for leaving me (like he had a choice). Even surrounded be people I know really love me, I feel more lonely than I thought possible. I feel hollow. Then...
I had a better day. After visiting the doctor on Friday, determining I have an ear infection, I promptly went home with every intention of getting drunk on tequila. Truth? I had two shots and went to bed, I've never been much of a drinker, and I woke up on Saturday feeling like a new woman. I cleaned the house, purging much of the leftover medical stuff from Avi's dying and rearranging things to suit me. I changed our bedroom enough to keep the coziness but not remind me that the man I loved died there. It felt great, and when I went out to dinner with friends last night I enjoyed myself and felt lighter for it. I still cried when I came home, because I miss him and I'm going to cry about it. It is going to be like this for a while, but I can see the good even in feeling the bad.
I was anxious to go back, because I knew the routine would be good for me. My Monday started out with a six year-old walking out of school and before he even said "hi" I was greeted with "I heard about Avi. I'm sorry. It is okay to be sad." The things kids say, right? He was honest in his questions and as I had already done a check-in with his parents, I knew that I could answer him honestly or not answer him at all. The subject was continued while waiting for the trolley and then dropped for several days. The great thing about kids, their honest. He never tried to step around my feelings, he was curious, he gently made me talk about it in a way that was more comfortable than most of the adult conversations I had in the past two weeks. I'm really grateful that it happened that way.
Then snow happened. My supposedly easy week turned into three days of my doing overtime. I love being a nanny, I hate when school is canceled! It made me tired and grumpy and I didn't want to do anything when I got home, but cry and sleep. I ignored the dishes, the laundry, the dogs...well not really the dogs, Hadley would never allow it, but I wasn't my usual playful self with them. I wanted to sleep and never wake up. It so sucked.
Grieving is hard work. It drains every last bit of energy from me and right when I get a moment of peaceful mindlessness, my stomach drops down to my toes as I realize HE'S GONE AND HE'S NEVER COMING BACK! It is awful, the tears come, the memories flood in and I get angry at him for leaving me (like he had a choice). Even surrounded be people I know really love me, I feel more lonely than I thought possible. I feel hollow. Then...
I had a better day. After visiting the doctor on Friday, determining I have an ear infection, I promptly went home with every intention of getting drunk on tequila. Truth? I had two shots and went to bed, I've never been much of a drinker, and I woke up on Saturday feeling like a new woman. I cleaned the house, purging much of the leftover medical stuff from Avi's dying and rearranging things to suit me. I changed our bedroom enough to keep the coziness but not remind me that the man I loved died there. It felt great, and when I went out to dinner with friends last night I enjoyed myself and felt lighter for it. I still cried when I came home, because I miss him and I'm going to cry about it. It is going to be like this for a while, but I can see the good even in feeling the bad.
Avi,
I started this week like I could forget. I couldn't. The house is too quiet without you, My phone is too silent without your calls. Coming home isn't the same. Our bed feels empty and cold without your warmth. I was angry, this week, that you left me here...alone. I remembered the first time you told me you loved me. (You were drunk.) You told me you felt it for a long time but didn't want to tell me because you were afraid I would break your heart. Funny how things turn out, huh?
I miss you,
Shawna
Sunday, January 23, 2011
The clean-up
Tomorrow I go back to work. This is something I have been looking forward to for a several days. It feels empowering to go back to work, to take a little of my normal routine back, and I love routine. It has also made me take a good hard look around the house. It is time to clean-up.
When I say clean-up I don't mean throw out, but get my environment to a state that will help and not hinder my recovery from Avi's disease and death. I would love to call it down-sizing, but really it is going to be a big taking out the trash kind of process. Avi kept everything...G-d love him, I do mean everything. There will be a great shredder event that will have to happen, because we're talking about documents that are at least a decade old and no longer relevant. I will have to completely reorganize his paperwork and update "his" filing system in our office, so that I can actually find things. The chaos that has become our house is going to be controlled. I'm going to create a peaceful environment where I can actually get some healing done. I really don't want to spend the next few months cursing his name because I can't find something. I love him too much for that.
I also realize that the great clean-up will also involve some baggage. My weight is a great example of the baggage left behind after cancer. I ate every sad, scared, angry feeling I had. I literally feel like I am having cancer's baby, I have gained that much weight. It sucks. I'll never be able to heal until I start shedding some of the baggage off my body. **Bonus, I get to be healthy!**
There is also the emotional clean-up post Avi's death. Relationships will change. There was some damage done...still being done. His death feels like a hurricane hit my heart. I have to believe that Avi died when he did for a reason. Like he was trying to figure out who would honor their promise to be there for me. A test to see who could last out the year. I must say, he chose very well. Never have I been more proud of six people, Avi's "family of choice". Each of them made him a promise and they have exceeded his expectations already. I was really afraid that when Avi died. Afraid that I would never feel emotionally safe again. I have felt nothing but safe, allowed to grieve as I need without feeling like people are babysitting me. As one friend stated, "I wish I had thought to ask for a 'How to take care of Shawna' manual." Can you imagine the money we could make off of writing manuals for the hard stuff? I get that it would make things easier for people to have a guide, but these people are kicking ass anyway. With their strength and support, those other relationships that I once thought vital, can fade into history. The emptiness will feel less devastating as we share past stories and create new ones. We will have new traditions because...well, he left me the Zuppe di Pecce recipe, and that should be shared.
Avi,
I keep hoping to have a dream about you. It hasn't happened yet and it makes me sad. Even when you were in the hospital I would dream about you, hear your voice in my dreams, feel your skin through some memory while I slept. I miss it. I miss you. Memory isn't as good as the real thing. Dreams are closer.
You promised to haunt me...make it happen! I didn't watch Ghost Whisperer all those times for nothing, you were supposed to be learning something.
I love you,
Shawna
When I say clean-up I don't mean throw out, but get my environment to a state that will help and not hinder my recovery from Avi's disease and death. I would love to call it down-sizing, but really it is going to be a big taking out the trash kind of process. Avi kept everything...G-d love him, I do mean everything. There will be a great shredder event that will have to happen, because we're talking about documents that are at least a decade old and no longer relevant. I will have to completely reorganize his paperwork and update "his" filing system in our office, so that I can actually find things. The chaos that has become our house is going to be controlled. I'm going to create a peaceful environment where I can actually get some healing done. I really don't want to spend the next few months cursing his name because I can't find something. I love him too much for that.
I also realize that the great clean-up will also involve some baggage. My weight is a great example of the baggage left behind after cancer. I ate every sad, scared, angry feeling I had. I literally feel like I am having cancer's baby, I have gained that much weight. It sucks. I'll never be able to heal until I start shedding some of the baggage off my body. **Bonus, I get to be healthy!**
There is also the emotional clean-up post Avi's death. Relationships will change. There was some damage done...still being done. His death feels like a hurricane hit my heart. I have to believe that Avi died when he did for a reason. Like he was trying to figure out who would honor their promise to be there for me. A test to see who could last out the year. I must say, he chose very well. Never have I been more proud of six people, Avi's "family of choice". Each of them made him a promise and they have exceeded his expectations already. I was really afraid that when Avi died. Afraid that I would never feel emotionally safe again. I have felt nothing but safe, allowed to grieve as I need without feeling like people are babysitting me. As one friend stated, "I wish I had thought to ask for a 'How to take care of Shawna' manual." Can you imagine the money we could make off of writing manuals for the hard stuff? I get that it would make things easier for people to have a guide, but these people are kicking ass anyway. With their strength and support, those other relationships that I once thought vital, can fade into history. The emptiness will feel less devastating as we share past stories and create new ones. We will have new traditions because...well, he left me the Zuppe di Pecce recipe, and that should be shared.
Avi,
I keep hoping to have a dream about you. It hasn't happened yet and it makes me sad. Even when you were in the hospital I would dream about you, hear your voice in my dreams, feel your skin through some memory while I slept. I miss it. I miss you. Memory isn't as good as the real thing. Dreams are closer.
You promised to haunt me...make it happen! I didn't watch Ghost Whisperer all those times for nothing, you were supposed to be learning something.
I love you,
Shawna
Saturday, January 22, 2011
Ch-ch-ch-changes
So I changed my blog today. It felt good. It felt like a very small step in the "life must go on" portion of my grieving. I think it feels better, like a clean start to some things. Guess what...I don't have to write about how craptastic cancer is anymore. Instead I'm going to write about the small changes I am going to start making to my life.
First...I am going back to work on Monday. It may be too soon, but I'm not going to not try. I love my job and I miss it terribly. I think it will be an important part of trying to reclaim my life for me.
Second...I have joined a gym and I am going to start running again. A long, long, long time ago, I would run, everyday. I loved it. Then life happened and I gained like 60lbs (I call it my cancer weight) and the running stopped. My plan is to do at least one 5k this year and the Light up the Night walk (benefiting the Leukemia and Lymphoma Society) in November. The first one is for me and the second will be to honor Avi. Stay tuned, I'll probably add something on here to help raise money for it.
Third...I am going to register to be a bone marrow donor. I think it is going to be the most important thing that I will do this year to honor my time with Avi.
You see, I've been thinking a lot about my life and what I want for myself. The one thing I keep going back to is, I want to GIVE. My spirit feels a little empty with Avi gone and I think "giving" is going to be what makes it feel less empty.
Avi,
I think you would be proud of us. Your family and friends have joined together as a unit. Although shiva has come to an end, the grieving for you continues. We are not doing it alone though. We are doing what you asked, leaning on each other, supporting each other, crying and laughing with each other. Your voice is missed in the chaos. We are your voice now, all of us, in the stories we tell. You would love it.
Please stop making the dogs bark at the wall, it freaks me out.
I love you,
Shawna
First...I am going back to work on Monday. It may be too soon, but I'm not going to not try. I love my job and I miss it terribly. I think it will be an important part of trying to reclaim my life for me.
Second...I have joined a gym and I am going to start running again. A long, long, long time ago, I would run, everyday. I loved it. Then life happened and I gained like 60lbs (I call it my cancer weight) and the running stopped. My plan is to do at least one 5k this year and the Light up the Night walk (benefiting the Leukemia and Lymphoma Society) in November. The first one is for me and the second will be to honor Avi. Stay tuned, I'll probably add something on here to help raise money for it.
Third...I am going to register to be a bone marrow donor. I think it is going to be the most important thing that I will do this year to honor my time with Avi.
You see, I've been thinking a lot about my life and what I want for myself. The one thing I keep going back to is, I want to GIVE. My spirit feels a little empty with Avi gone and I think "giving" is going to be what makes it feel less empty.
Avi,
I think you would be proud of us. Your family and friends have joined together as a unit. Although shiva has come to an end, the grieving for you continues. We are not doing it alone though. We are doing what you asked, leaning on each other, supporting each other, crying and laughing with each other. Your voice is missed in the chaos. We are your voice now, all of us, in the stories we tell. You would love it.
Please stop making the dogs bark at the wall, it freaks me out.
I love you,
Shawna
Thursday, January 20, 2011
1.20.11
Yesterday was the one week of Avi's passing. The family is still sitting Shiva and I am doing what I need to...well, to just survive. Writing is hard because Avi was my editor, and without his reading over my shoulder and constructive criticism I feel a little lost.
This blog will change now. My life has changed. Not just with Avi's passing but with the realization that cancer is no longer a character in my story. Now I need to deal with the widow portion, and yes I hate that word already. "Navigating the new normal," it is a phrase you here a lot in cancer recovery. Never did I think I would be applying it to a life without Avi. I will do it. I will do it one day at a time. I will try, for now, not to worry about how I will feel tomorrow but to focus on today, feeling what I need to feel, the pain, the loss, the sadness, the emptiness. I will begin to reclaim my life from before cancer, my degree, my health, socializing once again, all the things I loved to do with Avi, but now must learn to do alone. Going to the theater will never be the same.
I do want to thank everyone who sent flowers, sent cards, wrote emails, sent personal messages via Facebook, and the phone calls to see how I was doing. It was so kind of you to take time from your own grieving or lives to check on me. It made the world feel less lonely and I thank you so much for it.
I'm lucky. I got to have the love of my life, even for a short while. Not many people get to say that.
This blog will change now. My life has changed. Not just with Avi's passing but with the realization that cancer is no longer a character in my story. Now I need to deal with the widow portion, and yes I hate that word already. "Navigating the new normal," it is a phrase you here a lot in cancer recovery. Never did I think I would be applying it to a life without Avi. I will do it. I will do it one day at a time. I will try, for now, not to worry about how I will feel tomorrow but to focus on today, feeling what I need to feel, the pain, the loss, the sadness, the emptiness. I will begin to reclaim my life from before cancer, my degree, my health, socializing once again, all the things I loved to do with Avi, but now must learn to do alone. Going to the theater will never be the same.
I do want to thank everyone who sent flowers, sent cards, wrote emails, sent personal messages via Facebook, and the phone calls to see how I was doing. It was so kind of you to take time from your own grieving or lives to check on me. It made the world feel less lonely and I thank you so much for it.
I'm lucky. I got to have the love of my life, even for a short while. Not many people get to say that.
Monday, January 17, 2011
Eulogy
Avi and I talked a lot the last several months about legacy. What would Avi be leaving behind once he was gone. Amazing parents, wonderful siblings, the cutest nephew, life-long friends, two misbehaving dogs and a devoted and loving wife. He also left the legacy of what he taught each of us. Not just while he had cancer but throughout his life.
This is what I have learned from him:
I have learned what true kindness is. It is not something one does for reward or recognition, but for the simple fact that it is the right thing to do. I have learned that when two people truly love each other, something as horrible and scary, as cancer will be the adventure of a lifetime. “Go Team Teres!” He taught me to slow down and enjoy my life. He showed me that it isn’t about the mushrooms but the flowers that grow around them. And that garden gnomes aren’t so creepy. He was the music in my life and taught me it isn’t about the tune but rather making someone smile by singing it. Many of us will listen with our eyes, sing a rainbow and solve vampire crimes with science because of you, honey. He gave us the Junior Forensic Science kit…for girls.
I want to thank you Avi.
Thank you for thinking I was special enough to share your life, your friends and your family. They are amazing and I will cherish them always. Thank you for sharing your strength when I felt weak and trusting in my strength when you felt weak. Thank you for all of the conversations and all of the comfortable silence.
Mostly my love I want to thank you for fighting for every day we had together and giving me even our last day.
“Never think that I regret any part of my life. NO! In fact I am proud of the life I have lived. I have helped humanity and enjoyed life. I can go out knowing I did my part in some small way. I can rest comfortably knowing I am a loving husband and a friend to those in need.” The Journal of Avi Barak Teres 1977-2011
Friday, January 14, 2011
Yesterday afternoon, Avi ended his 27 month long battle with leukemia. His passing was quiet and peaceful, in a room filled with warmth and love from family and friends.
Funeral arrangements are as follows:
Sunday January 16, 2011 at 1pm
Joseph Levine & Son
2811 W. Chester Pike
Broomall, PA 19008
610-325-2000
Directions can be found at www.levinefuneral.com under the locations menu.
Those who wish to send flowers, please personal message and I will provide you with an address. Donations can be made to the Leukemia and Lymphoma Society. As always we encourage people to donate blood or volunteer to be a bone marrow donor.
Avi was a shining light to many and he will be missed.
Rest in peace my love.
Funeral arrangements are as follows:
Sunday January 16, 2011 at 1pm
Joseph Levine & Son
2811 W. Chester Pike
Broomall, PA 19008
610-325-2000
Directions can be found at www.levinefuneral.com under the locations menu.
Those who wish to send flowers, please personal message and I will provide you with an address. Donations can be made to the Leukemia and Lymphoma Society. As always we encourage people to donate blood or volunteer to be a bone marrow donor.
Avi was a shining light to many and he will be missed.
Rest in peace my love.
Tuesday, January 4, 2011
2010 Thank You...aka first gratitude list of 2011.
I always feel bad when I haven't posted in a while. I think it is because I want people to be informed about what is going on. I realize that I can only share so much and the daily life we have isn't so fun to rehash. Avi is set up in our bedroom, in a hospital bed, on pretty sheets, and knows he isn't going to get out of it, ever. There are some days when we can ignore this concept with the sound of visitors, the dogs, movies, and WoW. Then there are days when reality is a dark cloud in our house that just won't go away and we cry a lot.
I have gone back to work after a couple of weeks off. Going to work isn't difficult, I love my job. It is the interacting with the rest of the world and pretending I am ok...normal, that I find challenging. This is much easier to do when I'm not worried about what is going on at home with Avi and his care. We have AMAZING friends who are volunteering their time to stay with Avi so that I can go to work for a few hours each day, which is all I can handle. They are a gift, and I will never be able to repay their kindness, and loving generosity. If they are reading this...You guys are amazing and we are sooo incredibly blessed and grateful for you. Thank you!!
Since I seem to be on a grateful kick...
I would also like to thank our New Year's Eve fairy...um, maybe "elf" would be a better word. He truly helped make our celebration a "bubbly" one. I will remember it always, the look in Avi's eyes when we toasted the new year, "To our friends and family. To our love." You gave us that moment. Thank you!
To our Mets fan: You made sure that I had girl time last week, in an actual restaurant. It helped rejuvenate me more than I could express to you that day. You made my heart feel lighter, my head feel clearer and we can't wait to do Mad-Libs with you!
Our friends from over the river who brought us dinner and took me grocery shopping (so I didn't have to go alone) before Christmas (and the snow storm). You gave up vacation time and took off work to spend time with us, helped clean our house, walk our crazy dogs, and make sure I didn't have to cook for a couple of days. Thank you, Thank you, Thank you!!!
**(To the above mentioned: you have been our rocks, weathering the storm with us, no matter how much we got rained on. Uplifting us when we couldn't do it for each other. We love you all more than you will ever know. You are our family of choice, and we got the best of the bunch!)**
Thank you to the family that sent us two little red angels. It was a wonderful surprise on a day that wasn't going so well. They sat on top of our tree, side-by-side, from the moment we opened them. Perfect.
I am also incredibly grateful for Avi's family, who came and sat with him so I could see the downstairs of my house. You love me, hugged me, shopped for us, and looked through old photos with us so I could hear stories of when Avi was younger. I got lucky when I became part of this family and my heart hurts with the amount of love I have for you. I swear I was Jewish in another life.
Thank you to my family (BFF included) who gave us movies to watch, an amaryllis to grow, and sent me "home" in a box. I was able to hear Avi really laugh, eat Chocolate Charlie in the middle of the night when I was sad, and I got to garden in the winter. It was the BEST Christmas ever. I miss you all. Thank you for the phone calls, those cellular hugs, that get me through my rough days, making me feel closer than the 600 miles that separate us.
I want to thank Avi, for getting me something to keep me from shocking myself on electrical outlets (it happens a lot). Thanks for getting me gloves to keep my fingers warm and for trying to take care of me, even now. For being there to laugh with me and cry. For sharing stories with me and about me. For trusting me with this part of your life. Thank you honey, for being the gnome to my fairy and the turtle to my frog. Most importantly thank you for being there for one more day.
I have gone back to work after a couple of weeks off. Going to work isn't difficult, I love my job. It is the interacting with the rest of the world and pretending I am ok...normal, that I find challenging. This is much easier to do when I'm not worried about what is going on at home with Avi and his care. We have AMAZING friends who are volunteering their time to stay with Avi so that I can go to work for a few hours each day, which is all I can handle. They are a gift, and I will never be able to repay their kindness, and loving generosity. If they are reading this...You guys are amazing and we are sooo incredibly blessed and grateful for you. Thank you!!
Since I seem to be on a grateful kick...
I would also like to thank our New Year's Eve fairy...um, maybe "elf" would be a better word. He truly helped make our celebration a "bubbly" one. I will remember it always, the look in Avi's eyes when we toasted the new year, "To our friends and family. To our love." You gave us that moment. Thank you!
To our Mets fan: You made sure that I had girl time last week, in an actual restaurant. It helped rejuvenate me more than I could express to you that day. You made my heart feel lighter, my head feel clearer and we can't wait to do Mad-Libs with you!
Our friends from over the river who brought us dinner and took me grocery shopping (so I didn't have to go alone) before Christmas (and the snow storm). You gave up vacation time and took off work to spend time with us, helped clean our house, walk our crazy dogs, and make sure I didn't have to cook for a couple of days. Thank you, Thank you, Thank you!!!
**(To the above mentioned: you have been our rocks, weathering the storm with us, no matter how much we got rained on. Uplifting us when we couldn't do it for each other. We love you all more than you will ever know. You are our family of choice, and we got the best of the bunch!)**
Thank you to the family that sent us two little red angels. It was a wonderful surprise on a day that wasn't going so well. They sat on top of our tree, side-by-side, from the moment we opened them. Perfect.
I am also incredibly grateful for Avi's family, who came and sat with him so I could see the downstairs of my house. You love me, hugged me, shopped for us, and looked through old photos with us so I could hear stories of when Avi was younger. I got lucky when I became part of this family and my heart hurts with the amount of love I have for you. I swear I was Jewish in another life.
Thank you to my family (BFF included) who gave us movies to watch, an amaryllis to grow, and sent me "home" in a box. I was able to hear Avi really laugh, eat Chocolate Charlie in the middle of the night when I was sad, and I got to garden in the winter. It was the BEST Christmas ever. I miss you all. Thank you for the phone calls, those cellular hugs, that get me through my rough days, making me feel closer than the 600 miles that separate us.
I want to thank Avi, for getting me something to keep me from shocking myself on electrical outlets (it happens a lot). Thanks for getting me gloves to keep my fingers warm and for trying to take care of me, even now. For being there to laugh with me and cry. For sharing stories with me and about me. For trusting me with this part of your life. Thank you honey, for being the gnome to my fairy and the turtle to my frog. Most importantly thank you for being there for one more day.
Tuesday, December 21, 2010
Dec. 21st
There is something about today that is screaming in my head to write, write, write. It could be that after several days in the house, my brain is able to process what has been going on.
On Wednesday of last week, Avi had an incident while getting out of bed. His legs were not strong enough to support his body and he dislocated and more than likely fractured his hip. He was in a great deal of pain and I immediately went into emergency mode. Within a couple of hours, I had a nurse in our home calling in prescriptions, I was moving furniture for the hospital bed that was on it's way, and had called in reinforcements to help. Avi will no longer be able to get out of bed with a strong possibility of EVER again. We had been in the process of mentally preparing for this when the incident occurred and this sort of rushed along our process. Avi hates to be rushed. I'm not to thrilled with it either.
I had a very honest talk with our hospice nurse who is AMAZING! She has prepared me that this is the beginning of the end. It feels strange to say that, like he is dying this very second, when in fact he is laying in bed and playing World of Warcraft while talking to his brother on the phone. His mind, continues to be sharp when the haze and drowsiness of the drugs are not taking over. We are saying "I love you" a lot.
I looked at him the other evening, after people had left for the day and we were having our quiet time getting ready for bed. I told him this...
"You know that I don't believe in God, but I know that you do. I think that God, has realized that you have learned all the lessons he has given you. There is nothing more for you to learn. I think that God believes you have given more to people in your 32 years, than most have in 80 or 90. I also think that you have taught people more, made people better, given in ways that the rest of us haven't even learned to yet. You cancer isn't a punishment or another lesson to be learned. It was God's way of giving you early retirement. You have done enough. You have given enough. It is time for you to have peace."
He cried as I told him this. His only reply was that no one had said that to him yet. Do you know why? Because we all recognize what a shining warm light he is in our lives. Who wants to give that up? I don't. Who wouldn't fight to keep that around, to be near it whenever they could? I have for two years. So for now I'm going to just enjoy every day I have with him. Every moment he shines that light my way, and I become a better person for it. I'm going to absorb as much of him as I can, while he's here. Because I know that not everyone gets an Avi in there life, and only I get to be married to him.
And I'm am going to now, by playing a little WoW with him and enjoying one more day together.
On Wednesday of last week, Avi had an incident while getting out of bed. His legs were not strong enough to support his body and he dislocated and more than likely fractured his hip. He was in a great deal of pain and I immediately went into emergency mode. Within a couple of hours, I had a nurse in our home calling in prescriptions, I was moving furniture for the hospital bed that was on it's way, and had called in reinforcements to help. Avi will no longer be able to get out of bed with a strong possibility of EVER again. We had been in the process of mentally preparing for this when the incident occurred and this sort of rushed along our process. Avi hates to be rushed. I'm not to thrilled with it either.
I had a very honest talk with our hospice nurse who is AMAZING! She has prepared me that this is the beginning of the end. It feels strange to say that, like he is dying this very second, when in fact he is laying in bed and playing World of Warcraft while talking to his brother on the phone. His mind, continues to be sharp when the haze and drowsiness of the drugs are not taking over. We are saying "I love you" a lot.
I looked at him the other evening, after people had left for the day and we were having our quiet time getting ready for bed. I told him this...
"You know that I don't believe in God, but I know that you do. I think that God, has realized that you have learned all the lessons he has given you. There is nothing more for you to learn. I think that God believes you have given more to people in your 32 years, than most have in 80 or 90. I also think that you have taught people more, made people better, given in ways that the rest of us haven't even learned to yet. You cancer isn't a punishment or another lesson to be learned. It was God's way of giving you early retirement. You have done enough. You have given enough. It is time for you to have peace."
He cried as I told him this. His only reply was that no one had said that to him yet. Do you know why? Because we all recognize what a shining warm light he is in our lives. Who wants to give that up? I don't. Who wouldn't fight to keep that around, to be near it whenever they could? I have for two years. So for now I'm going to just enjoy every day I have with him. Every moment he shines that light my way, and I become a better person for it. I'm going to absorb as much of him as I can, while he's here. Because I know that not everyone gets an Avi in there life, and only I get to be married to him.
And I'm am going to now, by playing a little WoW with him and enjoying one more day together.
Tuesday, December 14, 2010
Brother Ladies
Over the last few days I have had some really amazing phone calls. To those four individuals, I want to say "Thank-you!!!" You helped even out my footing and each put back a piece of me I wasn't aware had come loose. I got to talk about new jobs, puppies, snow, the holidays, babies, and Hawaii. I also got reassurances, wisdom, truth (I know that was a hard one), and reminders. I was listened to, through tears and the five hundred times I must of blown my nose over the phone. Bless you all for giving me that time, and the shoulders to lean against.
One of the things brought up had me thinking all day. I was asked how I was staying connected. I interpreted this question as "What are you doing to honor yourself?" I had no idea what that even meant when it was asked. How am I staying connected? How do I honor myself?
I figured it out when I got home this evening. WoW.
One of the things brought up had me thinking all day. I was asked how I was staying connected. I interpreted this question as "What are you doing to honor yourself?" I had no idea what that even meant when it was asked. How am I staying connected? How do I honor myself?
I figured it out when I got home this evening. WoW.
 | ||||
| Shawna's and Avi's characters in World of Warcraft |
Saturday, December 11, 2010
Dec. 8-12
Over the past few days there has been a lot of crying in our house. This is why I haven't written anything, because we were in the middle of a major processing session. Avi is on a physical decline and although it was expected it came at a hefty emotional price. It was like the huge red firetruck in our house had let out a warning bell. Screaming to us both, that this is real, this is happening, and there was nothing we could do to pretend otherwise. So, we started talking. Crying. Yelling.
A lot of things had been happening over...I want to say weeks, but I realize that it really has been about two months now. We had stopped talking about Avi dying. It was easy to forget. He was laughing, smiling, walking around with ease, and enjoying people's company. That has started to change.
We noticed things change about a week and a half ago. He started moving with more difficulty, he started having a hard time staying steady on his feet, and the stairs were starting to be very difficult for him. Today, he only went upstairs to use the bathroom, waiting as long as possible before he went. He stayed on the couch asking me to get things for him, make his meals, grab things that were out of reach, and open his medicine bottles. Soon, probably within the next week or so, he may be confined to one floor of the house. After that...
Avi's mind is as sharp as ever. In our seemingly endless talks the past few day, he verbalized some real fears, sadness, and joy. He wants to talk about dying, and he did. He is not afraid to use the "CANCER" word. Yeah, I capitalized it, I'm not afraid of it, although I realize most people are. I'm also not afraid to say, "Avi is DYING of CANCER." I've had a lot of practice over the past few days. Avi isn't afraid of saying it either. I believe that although he is fighting every step of the way, he is finally starting to prepare for the end. We rehashed our decisions throughout his treatment. We reflected on how our life went from planning on our future to planning for our end, in just a few short months. Who is going to get the baseball card collection? I've been pretty emotional this whole time. He finally let it all out. The saddest part is that I have been the only one to hear it. How I wish that his friends and family could have been here. I wish this whole thing didn't feel like such a taboo topic. "Don't talk about dying, and for God's sake don't talk to the dying man about dying." TALK!!!!! Please talk. Trust me, the not talking isn't cutting it. Don't ask us how we are. Avi is dying. WE SUCK! This SUCKS!!!! Ask us how we feel. It will be worth it. Don't wait until the end to say your good-byes, your "I'll see you in the next life brother." Do it while he is present.
It will be no deathbed confession, just a dying man having the chance to mourn for his own life with people he loves. It will beautiful. Ugly. It will be real.
A lot of things had been happening over...I want to say weeks, but I realize that it really has been about two months now. We had stopped talking about Avi dying. It was easy to forget. He was laughing, smiling, walking around with ease, and enjoying people's company. That has started to change.
We noticed things change about a week and a half ago. He started moving with more difficulty, he started having a hard time staying steady on his feet, and the stairs were starting to be very difficult for him. Today, he only went upstairs to use the bathroom, waiting as long as possible before he went. He stayed on the couch asking me to get things for him, make his meals, grab things that were out of reach, and open his medicine bottles. Soon, probably within the next week or so, he may be confined to one floor of the house. After that...
Avi's mind is as sharp as ever. In our seemingly endless talks the past few day, he verbalized some real fears, sadness, and joy. He wants to talk about dying, and he did. He is not afraid to use the "CANCER" word. Yeah, I capitalized it, I'm not afraid of it, although I realize most people are. I'm also not afraid to say, "Avi is DYING of CANCER." I've had a lot of practice over the past few days. Avi isn't afraid of saying it either. I believe that although he is fighting every step of the way, he is finally starting to prepare for the end. We rehashed our decisions throughout his treatment. We reflected on how our life went from planning on our future to planning for our end, in just a few short months. Who is going to get the baseball card collection? I've been pretty emotional this whole time. He finally let it all out. The saddest part is that I have been the only one to hear it. How I wish that his friends and family could have been here. I wish this whole thing didn't feel like such a taboo topic. "Don't talk about dying, and for God's sake don't talk to the dying man about dying." TALK!!!!! Please talk. Trust me, the not talking isn't cutting it. Don't ask us how we are. Avi is dying. WE SUCK! This SUCKS!!!! Ask us how we feel. It will be worth it. Don't wait until the end to say your good-byes, your "I'll see you in the next life brother." Do it while he is present.
It will be no deathbed confession, just a dying man having the chance to mourn for his own life with people he loves. It will beautiful. Ugly. It will be real.
Monday, December 6, 2010
Who am I?
I don't even know anymore.
I wish today felt different. I wish Avi would wake up and want to spend time with me. Instead he sleeps.
And I am alone.
Sad.
So, today I will be grateful.
Grateful for...
South Philly blocks decorated in lights.
Kleenex with lotion.
Sisters who are friends and friends who are sisters.
Books. I'm finishing the Fablehaven series.
World of Warcraft, without which, my brain would have melted or exploded. It gives me a moment to turn off.
Yes, I am grateful for one more day, to see him, hear him, feel him and be with him. No matter how lonely, sad or tiring this is...at least I got one more day.
I wish today felt different. I wish Avi would wake up and want to spend time with me. Instead he sleeps.
And I am alone.
Sad.
So, today I will be grateful.
Grateful for...
South Philly blocks decorated in lights.
Kleenex with lotion.
Sisters who are friends and friends who are sisters.
Books. I'm finishing the Fablehaven series.
World of Warcraft, without which, my brain would have melted or exploded. It gives me a moment to turn off.
Yes, I am grateful for one more day, to see him, hear him, feel him and be with him. No matter how lonely, sad or tiring this is...at least I got one more day.
Friday, December 3, 2010
Dec. 3
I'm late posting today because I have just returned from the pharmacy, where I was trying to pick up Avi's much needed prescriptions for pain management. I wasn't allowed to, because of our wonderful insurance company refusing to cover an increase in dosage. Or they aren't understanding the increase in dosage. We're all a little unclear about that right now.
I could have gotten mad this morning, frustrated, screamed, cried, but the first thing I did was call our doctor's office and asked them for help straightening this out. They know us there, by name, face, and voice. We probably didn't say thank you enough, or let our fear, frustration and sadness get the better of us one too many times. These people are the ones who would make sure it was possible for me to spend the night with Avi in the hospital, even though I wasn't supposed to, so he wouldn't be alone. They were kind, loving and caring even when we weren't feeling the same. They always had a friendly face, time to answer questions, help when we needed extra hands, and added another voice when lecturing Avi on what the pain scale really was. They brought us a cake, the day after our wedding when instead of on our honeymoon, we were in the Infusion Center getting blood tests and platelets.
This post isn't going to be about the health care system, the insurance companies, or the drug companies. Too many people have told me how amazing I am for doing all of this. I want you to know I didn't do it alone. I am amazing because I was surround by an amazing medical team who helped keep our family together. The people who have fought for us not only today to get his meds, but for the past two years to help him survive. We have an amazing team of doctors, nurses and support staff that helped make the past two years possible. We will never be able to say thank you enough and they are what I am really grateful for today. Grateful for helping me have one more day.
I could have gotten mad this morning, frustrated, screamed, cried, but the first thing I did was call our doctor's office and asked them for help straightening this out. They know us there, by name, face, and voice. We probably didn't say thank you enough, or let our fear, frustration and sadness get the better of us one too many times. These people are the ones who would make sure it was possible for me to spend the night with Avi in the hospital, even though I wasn't supposed to, so he wouldn't be alone. They were kind, loving and caring even when we weren't feeling the same. They always had a friendly face, time to answer questions, help when we needed extra hands, and added another voice when lecturing Avi on what the pain scale really was. They brought us a cake, the day after our wedding when instead of on our honeymoon, we were in the Infusion Center getting blood tests and platelets.
This post isn't going to be about the health care system, the insurance companies, or the drug companies. Too many people have told me how amazing I am for doing all of this. I want you to know I didn't do it alone. I am amazing because I was surround by an amazing medical team who helped keep our family together. The people who have fought for us not only today to get his meds, but for the past two years to help him survive. We have an amazing team of doctors, nurses and support staff that helped make the past two years possible. We will never be able to say thank you enough and they are what I am really grateful for today. Grateful for helping me have one more day.
Thursday, December 2, 2010
A time for...
I've been thinking about the concept of "miracles" a lot lately. This being the holiday season, I feel like the word is all over the place. For our family, I feel like it keeps being mentioned more than I am comfortable with.
I have a great imagination. I believe in fairies, magic and Santa, but I get grossly uncomfortable at the mention of a "miracle'. I believe Santa comes to our house first, on Christmas Eve and that fairies are what makes my garden look amazing all summer. I almost have Avi convinced of both of these facts too...almost. I know that I will never see a fairy, Santa, or magic. I know deep down that I am the fairy that makes the garden grow (yeah I talk to my plants), we are Santa for each other, and magic can be as simple as two people who have had awful relationships in the past, finding a healthy partner/friend in each other and falling in love. "Miracles" are too steeped in reality for me. They are something that could happen and could be life altering. What defines a "miracle"?
In the past two years Avi almost died...like three times. The first time was our initial visit to the ER on September 25, 2008. I remember this day because it is also my sister's birthday. He collapsed first thing in the morning after getting up to go to the bathroom. He hadn't been feeling well for a while and because of a lack of insurance (story for another time) he hadn't gone to the doctor. He walked in our bedroom, swerved like he was drunk and fainted (he's telling me men pass out) into our fan, almost hitting his head on the vanity. I rushed to his side and when I saw his eyes clear, I announced, "You are going to the ER. Either you go in the car or you go in an ambulance. Choose." We were at our nearest ER in 30 minutes. They told me later if I had let him put it off any longer he would have died. The cancer, (which we thought was simple back pain) was pretty far along and he would start Chemo a week later. Was it a "miracle" that I chose that day to be more stubborn than him?
The second time we almost lost him was when he was finishing his last round of Chemo before his first BMT (bone marrow transplant). He had an allergic reaction to one of the Chemo drugs and stopped breathing. He was alone in his room, because it was in the middle of the day. His room was next to the nurses station, and because we were always so friendly with the nurses, they frequently came in to see him even if he wasn't their patient. One happened to be reaching for his door as he passed out reaching for the nurses call button (he knew something wasn't right). She walked in as he lost consciousness and although he stopped breathing, his heart never stopped and by the time I was informed and got back to the hospital, he was in ICU and conscious again. Was it a "miracle"?
The last time we almost lost him was when the cancer relapsed last fall. His platelets were dropping daily and a second BMT was proposed. Avi had already lost a lot of weight, and the doctor gave us this wonderful speech about how the cancer was really strong now and chances were he wouldn't survive the proposed Chemo regimen much less the transplant itself. He looked at Avi and said you can just stop if you want. We got married and Avi said he wanted to spend "forever with me". Was our marriage the "miracle" that helped him survive the Chemo and transplant when he dropped down to 118lbs and his body was absolutely ravaged by not only the cancer but all of the treatment as well?
Avi has decided not to do anymore treatment. He feels the medical world has done all they could for him. You could say they have given us one "miracle" after another. He truly believes that any more drug regimens and his life would be shortened and would rather have extra time before the cancer kills him. He would rather die at home, than in a hospital. When we told people, we received several responses of, "I will pray for a miracle." I think that is a wonderful sentiment. I think it is amazing how much people love him and want to see him live a full and healthy life. We we simply responded with a "thank you". I could tell people were questioning why we weren't praying for a "miracle" too. I have been. For two years I have been and I got several. I got two years of time with him when it probably could have ended that day I first took him to the ER. I got the miracle of being married to him, I got last month, last week, yesterday, and now I get the "miracle" of being with him for one more day.
I have a great imagination. I believe in fairies, magic and Santa, but I get grossly uncomfortable at the mention of a "miracle'. I believe Santa comes to our house first, on Christmas Eve and that fairies are what makes my garden look amazing all summer. I almost have Avi convinced of both of these facts too...almost. I know that I will never see a fairy, Santa, or magic. I know deep down that I am the fairy that makes the garden grow (yeah I talk to my plants), we are Santa for each other, and magic can be as simple as two people who have had awful relationships in the past, finding a healthy partner/friend in each other and falling in love. "Miracles" are too steeped in reality for me. They are something that could happen and could be life altering. What defines a "miracle"?
In the past two years Avi almost died...like three times. The first time was our initial visit to the ER on September 25, 2008. I remember this day because it is also my sister's birthday. He collapsed first thing in the morning after getting up to go to the bathroom. He hadn't been feeling well for a while and because of a lack of insurance (story for another time) he hadn't gone to the doctor. He walked in our bedroom, swerved like he was drunk and fainted (he's telling me men pass out) into our fan, almost hitting his head on the vanity. I rushed to his side and when I saw his eyes clear, I announced, "You are going to the ER. Either you go in the car or you go in an ambulance. Choose." We were at our nearest ER in 30 minutes. They told me later if I had let him put it off any longer he would have died. The cancer, (which we thought was simple back pain) was pretty far along and he would start Chemo a week later. Was it a "miracle" that I chose that day to be more stubborn than him?
The second time we almost lost him was when he was finishing his last round of Chemo before his first BMT (bone marrow transplant). He had an allergic reaction to one of the Chemo drugs and stopped breathing. He was alone in his room, because it was in the middle of the day. His room was next to the nurses station, and because we were always so friendly with the nurses, they frequently came in to see him even if he wasn't their patient. One happened to be reaching for his door as he passed out reaching for the nurses call button (he knew something wasn't right). She walked in as he lost consciousness and although he stopped breathing, his heart never stopped and by the time I was informed and got back to the hospital, he was in ICU and conscious again. Was it a "miracle"?The last time we almost lost him was when the cancer relapsed last fall. His platelets were dropping daily and a second BMT was proposed. Avi had already lost a lot of weight, and the doctor gave us this wonderful speech about how the cancer was really strong now and chances were he wouldn't survive the proposed Chemo regimen much less the transplant itself. He looked at Avi and said you can just stop if you want. We got married and Avi said he wanted to spend "forever with me". Was our marriage the "miracle" that helped him survive the Chemo and transplant when he dropped down to 118lbs and his body was absolutely ravaged by not only the cancer but all of the treatment as well?
Avi has decided not to do anymore treatment. He feels the medical world has done all they could for him. You could say they have given us one "miracle" after another. He truly believes that any more drug regimens and his life would be shortened and would rather have extra time before the cancer kills him. He would rather die at home, than in a hospital. When we told people, we received several responses of, "I will pray for a miracle." I think that is a wonderful sentiment. I think it is amazing how much people love him and want to see him live a full and healthy life. We we simply responded with a "thank you". I could tell people were questioning why we weren't praying for a "miracle" too. I have been. For two years I have been and I got several. I got two years of time with him when it probably could have ended that day I first took him to the ER. I got the miracle of being married to him, I got last month, last week, yesterday, and now I get the "miracle" of being with him for one more day.
Wednesday, December 1, 2010
Chris-mah-kah
Today is the first day of December. It is also the first day of Hunka-chunka (Hanukkah). As I plan for our evening, dinner and lighting the menorah candles, I'm reflecting on our holiday season. It makes me think of the first year Avi and I were together and how far we have come, melding our two backgrounds into a cohesive time of celebration.
We had been dating a few months, newly in our relationship, trying to figure out if we wanted to move on to something beyond friends. He had just broken up with a girlfriend, and I had been dumped by two previous boyfriends for not being Jewish. People were telling him to "sew some oats" and people were warning me not to date another person who would reject me based on cultural differences. By autumn, we had discovered that our friendship wasn't going to be enough and there was some real attraction going on. Then came December, one of my favorite times of the year. Right after Thanksgiving, my little tree came out of storage and got decorated, while the house filled with smells of warming apple cider and cinnamon. Avi and I sat down and talked about how we would handle the upcoming holidays. We decided on mutually sharing the holidays while still doing "our own thing", family time for him sans me and my winter break in the burbs, where I was happy to be snowed in alone. This is when he initiated me into my first Hunka-chunka (This is how he refers to the holiday. I believe it is a childhood name for it and not meant to be disrespectful.) My first gift from him on the fourth day of Hanukkah was a set of antique glass cocktail stirrers in the shapes of flowers and leaves. I cried, really if you know me, it was like the perfect gift and he got it on the first try! For Christmas, I gave him a practical pair of new pajama pants, because I was tired of looking at the holes in the only pair of pajamas he had. At the time we weren't thinking of forever, so we just enjoyed sharing our holidays with each other and then when social obligations called we went our separate ways.
The following year our lives had changed dramatically. We were living together in our happy little house, Avi's parents finally knew I existed (a story for another day), Avi had been diagnosed with Leukemia, and we had just finished round one, entering into round two of Chemotherapy. Avi was able to do round two while being at home, going into the hospital every other day to get blood tests or actual doses of Chemo, and we were just happy that after eight weeks of hospitalization we could sleep in the same bed every night. We didn't know how blessed we were, that his regimen was somehow scheduled around both holidays. We blissfully took for granted that once transplant time came in the Spring, he would be cured and we would move on. We just put in our time doing what the doctors told us, and tried to complain as little as possible. When the time came to take out, "our" tree and "our" new menorah, I asked myself, "How are we going to do this?" I wanted desperately to please his family by honoring their traditions, but secretly I wanted my tree. For me, it has never been about the religious aspect of Christmas. To be honest, I'm not at all religious (I am however incredibly spiritual). The Christmas holiday has always been about giving to others and to really spend quality time with family and friends. I asked Avi if we could still do both holidays, and he replied, "Yeah, why wouldn't we? If you want a tree, put out the tree." And so began the first year of our family's Chrismahkah holiday season. It begins the first night of Hanukkah and ends New Year's day (or the day after depending on how lazy I feel taking down the decorations). It is a time when the two of us try to give back to our friends and family (even if it is an evening of movies and pizza). We express our gratitude for the many people in our lives and how blessed we are to have each other, our house, and our two wonderful little dogs.
This year on the first day of our family's holiday season, I want to share this:
Thanks to the universe for the time that we have had, please give us more time. Thank you to all of our friends, family, doctors, nurses, and strangers who have given us their time and kindness. Thank you to every single person who donates blood. It has been life saving. And thank you again for giving us one more day.
We had been dating a few months, newly in our relationship, trying to figure out if we wanted to move on to something beyond friends. He had just broken up with a girlfriend, and I had been dumped by two previous boyfriends for not being Jewish. People were telling him to "sew some oats" and people were warning me not to date another person who would reject me based on cultural differences. By autumn, we had discovered that our friendship wasn't going to be enough and there was some real attraction going on. Then came December, one of my favorite times of the year. Right after Thanksgiving, my little tree came out of storage and got decorated, while the house filled with smells of warming apple cider and cinnamon. Avi and I sat down and talked about how we would handle the upcoming holidays. We decided on mutually sharing the holidays while still doing "our own thing", family time for him sans me and my winter break in the burbs, where I was happy to be snowed in alone. This is when he initiated me into my first Hunka-chunka (This is how he refers to the holiday. I believe it is a childhood name for it and not meant to be disrespectful.) My first gift from him on the fourth day of Hanukkah was a set of antique glass cocktail stirrers in the shapes of flowers and leaves. I cried, really if you know me, it was like the perfect gift and he got it on the first try! For Christmas, I gave him a practical pair of new pajama pants, because I was tired of looking at the holes in the only pair of pajamas he had. At the time we weren't thinking of forever, so we just enjoyed sharing our holidays with each other and then when social obligations called we went our separate ways.
The following year our lives had changed dramatically. We were living together in our happy little house, Avi's parents finally knew I existed (a story for another day), Avi had been diagnosed with Leukemia, and we had just finished round one, entering into round two of Chemotherapy. Avi was able to do round two while being at home, going into the hospital every other day to get blood tests or actual doses of Chemo, and we were just happy that after eight weeks of hospitalization we could sleep in the same bed every night. We didn't know how blessed we were, that his regimen was somehow scheduled around both holidays. We blissfully took for granted that once transplant time came in the Spring, he would be cured and we would move on. We just put in our time doing what the doctors told us, and tried to complain as little as possible. When the time came to take out, "our" tree and "our" new menorah, I asked myself, "How are we going to do this?" I wanted desperately to please his family by honoring their traditions, but secretly I wanted my tree. For me, it has never been about the religious aspect of Christmas. To be honest, I'm not at all religious (I am however incredibly spiritual). The Christmas holiday has always been about giving to others and to really spend quality time with family and friends. I asked Avi if we could still do both holidays, and he replied, "Yeah, why wouldn't we? If you want a tree, put out the tree." And so began the first year of our family's Chrismahkah holiday season. It begins the first night of Hanukkah and ends New Year's day (or the day after depending on how lazy I feel taking down the decorations). It is a time when the two of us try to give back to our friends and family (even if it is an evening of movies and pizza). We express our gratitude for the many people in our lives and how blessed we are to have each other, our house, and our two wonderful little dogs.This year on the first day of our family's holiday season, I want to share this:
Thanks to the universe for the time that we have had, please give us more time. Thank you to all of our friends, family, doctors, nurses, and strangers who have given us their time and kindness. Thank you to every single person who donates blood. It has been life saving. And thank you again for giving us one more day.
Tuesday, November 30, 2010
I feel _____ today.
I realized this morning that my life is spent talking about Avi. How he is doing, how does he feel, what has the doctor said, and have they done any new tests. I'm frequently asked about him, by family and friends, who listen intently as I explain our doctor appointments, hospice care appointments, his daily well-being, what he feels up to doing, and etc... I am blessed to have a husband people adore and care deeply about. It reminds me so much of my dad and how people really, genuinely liked him, and how devastating it was when we lost him suddenly. People want to know, what is going on in Avi-land and I am more than happy to tell them and share our lives. This willingness to share is because I hope it will make people more comfortable with our situation and make being around us easier. Let's face it, cancer sucks. Some people find it really hard to be around cancer, some people have no idea how to act around people with cancer, and now we're throwing in the "dying of cancer" into it and that has a huge effect on all people.
To be fair, people ask me, "How are you?" I find this an odd question to process even when being asked by people who know me really well, like my sisters or really close friends. My auto-reply is, "I'm fine. Tired." "Fine" and "tired" are wonderful words. It doesn't make people uncomfortable, and when they say, "I understand," they really do. Everyone relates to "fine" and people get tired. People must think I am the most exhausted, lazy person in the world, because I am always tired. This is soooooo not true. I am like a pinball game of emotions, all of which I harness into energy (most of this energy is spent cleaning my house). In one day I get fear, anger, sadness, dread, pain, worry, regret, resentment, FEAR, ANGER, SADNESS. (repetition is not a typo, those are the biggies!) "Fine and tired" sound much better, huh?
Many years ago, I was involved in an intensive therapy group in order to help process my dad's death and the issues it caused in my relationships with people. I was in a group of about 18 and we had to go around the room and say out loud, "I feel _____ today." There were 18 replies of "I feel fine today." The therapist then looked at all of us and pointed to a chart on the wall with about 50 stick figure faces on it (you know the kind of chart that would hang in a 1st grade classroom) and said, "These are emotions that people have. 'Fine' is not up there because it is not and emotion. Try again." I was in the middle of the group and I remember struggling to really identify how I was feeling by my turn. That lesson has stuck with me to a certain extent. Now, when asked, I verbalize my auto-reply as I internalize what is really going on with me. I'm not afraid of my emotions, I frequently do an internal feelings check when things get stressful. The past week, as I was getting ready for the holiday I did several. Which was when I realized that some of my feelings of stress were stemming from my body finally getting sick despite my best efforts to deny it.
Do people really want to know what is going on with me though? Does my cold compare to his cancer? Do people really want to know my true feelings about what is going on, or do they just want to know how he is and when they can see him? Wow, that sounds a little bitter, and maybe it is. I'm constantly wondering if people are asking me the "How are you?" question to be polite and my reply is just being polite back. It is possible that I am short changing people by not fully sharing what is going on with me. Feelings and emotions are just not comfortable for some people to talk about. Avi and I frequently talk about what a blessing it is to openly talk about them with each other and feel safe in not being judged. There is this part of me that secretly hopes that if I share, someone else will, and then maybe we can all start leaning on each other in order to get through this. (I want this for both Avi and myself. It can be difficult to be the only emotional outlet for your partner, especially if you are both having a bad day.) Then there is a another part of me that is afraid to scare people off with what I am feeling. This second part of me is the one that worries, people won't share back. It would be like talking to a wall, leaving me more vulnerable then I already feel. At some point I'm going to have to dump the auto-reply. My eyes would probably give away the "fine" lie, and the fact that my house is spotless and completely rearranged will give away the "tired" lie. For today I will just let myself feel sick, while I go and enjoy one more day with my husband.
To be fair, people ask me, "How are you?" I find this an odd question to process even when being asked by people who know me really well, like my sisters or really close friends. My auto-reply is, "I'm fine. Tired." "Fine" and "tired" are wonderful words. It doesn't make people uncomfortable, and when they say, "I understand," they really do. Everyone relates to "fine" and people get tired. People must think I am the most exhausted, lazy person in the world, because I am always tired. This is soooooo not true. I am like a pinball game of emotions, all of which I harness into energy (most of this energy is spent cleaning my house). In one day I get fear, anger, sadness, dread, pain, worry, regret, resentment, FEAR, ANGER, SADNESS. (repetition is not a typo, those are the biggies!) "Fine and tired" sound much better, huh?
Many years ago, I was involved in an intensive therapy group in order to help process my dad's death and the issues it caused in my relationships with people. I was in a group of about 18 and we had to go around the room and say out loud, "I feel _____ today." There were 18 replies of "I feel fine today." The therapist then looked at all of us and pointed to a chart on the wall with about 50 stick figure faces on it (you know the kind of chart that would hang in a 1st grade classroom) and said, "These are emotions that people have. 'Fine' is not up there because it is not and emotion. Try again." I was in the middle of the group and I remember struggling to really identify how I was feeling by my turn. That lesson has stuck with me to a certain extent. Now, when asked, I verbalize my auto-reply as I internalize what is really going on with me. I'm not afraid of my emotions, I frequently do an internal feelings check when things get stressful. The past week, as I was getting ready for the holiday I did several. Which was when I realized that some of my feelings of stress were stemming from my body finally getting sick despite my best efforts to deny it.
Monday, November 29, 2010
Anticipatory Grief
It has been an extraordinary long time since I have posted last. There are a multitude of excuses that I could use for that neglect:
Avi relapsed, we got married, bone marrow transplant number two, recovery and now finally relapse number two. We found out six weeks ago.
In order to make this long story very short and avoid telling the long version yet again, Avi will not be doing any further treatment for his cancer. (Yes, it breaks my heart every time I say it or write it.) The doctor has told us he doesn't want to risk a third bone marrow transplant, and Avi feels the optional life extension treatment would really be a death sentence for him. (Who can blame him after two years of Chemo, radiation, two BMTs, a 60lb weight loss, and constantly being sick.) I don't feel guilty in saying I wish his choice was different but I understand it and I am honoring it. They can't tell us how long we have, they just don't know. We are playing a very awful waiting game.
My excuses being made, I turn again to writing with no other intention than to clear my head on a daily basis and share what is going on. Maybe this will help me in the long run, maybe this will help someone else who is searching for understanding or the peace of mind that come when you find out someone else is going through the same thing.
So, we celebrated Thanksgiving this last weekend. It was nice if not anti-climactic, all this build-up for a couple hours of eating and hanging out with the family and then silence. It wasn't that the holiday was hard or sad, it was the quiet afterward, when our brains went into overdrive and the crying started...and then stayed for two days like an unwanted guest. To give you an indication of how bad it got; at one point we were in our office and I was crying, asking how I was supposed to cope with the loss of my husband when I was losing my best friend too. He was crying about how this wasn't supposed to happen and how he wanted the chance to be a father, how he didn't want to leave me, and all the things he still hadn't done. His fear of dying, my fear of living. Yep, 48 hours of the most horrible thought processes EVER!
Plus, I was surrounded by food, which for me was like being an alcoholic and having this emotional break in a bar. I feel guilt for grieving when he's sitting right next to me. Not to mention, my many unspoken thoughts of how to move on once he's gone. I have to think about how I will afford to keep the house, what to do about my job, and how I will move on without him in order to rebuild a new life. I'm a planner, I always have been. It is much easier for me to live in the present if I have a plan for the future. This cancer has stripped our ability to plan any future, I have the awful reality of planning a will and a funeral. This has sent me into a world that feels really chaotic.
Last night I finally broke down and took an anti-anxiety pill, which helped clear my head, while keeping me out of the kitchen and away from the food. I got on the internet, with the intent of looking for holiday gifts, which then turned into looking at cancer caregiver sites, where finally I found and article on cancercare.org about Anticipatory Grief. It was like a three paragraphs of telling me that it was totally normal that we were having all of these feelings. Unfortunately, the article also went on to say it would continue to be a very roller-coaster ride until the end. It does make me feel better to know that we will level out again. Until then, I'm going to cry when I need to cry, comfort when I need to comfort, and remember to breath.
One day at a time.
Avi relapsed, we got married, bone marrow transplant number two, recovery and now finally relapse number two. We found out six weeks ago.
My excuses being made, I turn again to writing with no other intention than to clear my head on a daily basis and share what is going on. Maybe this will help me in the long run, maybe this will help someone else who is searching for understanding or the peace of mind that come when you find out someone else is going through the same thing.
So, we celebrated Thanksgiving this last weekend. It was nice if not anti-climactic, all this build-up for a couple hours of eating and hanging out with the family and then silence. It wasn't that the holiday was hard or sad, it was the quiet afterward, when our brains went into overdrive and the crying started...and then stayed for two days like an unwanted guest. To give you an indication of how bad it got; at one point we were in our office and I was crying, asking how I was supposed to cope with the loss of my husband when I was losing my best friend too. He was crying about how this wasn't supposed to happen and how he wanted the chance to be a father, how he didn't want to leave me, and all the things he still hadn't done. His fear of dying, my fear of living. Yep, 48 hours of the most horrible thought processes EVER!
Plus, I was surrounded by food, which for me was like being an alcoholic and having this emotional break in a bar. I feel guilt for grieving when he's sitting right next to me. Not to mention, my many unspoken thoughts of how to move on once he's gone. I have to think about how I will afford to keep the house, what to do about my job, and how I will move on without him in order to rebuild a new life. I'm a planner, I always have been. It is much easier for me to live in the present if I have a plan for the future. This cancer has stripped our ability to plan any future, I have the awful reality of planning a will and a funeral. This has sent me into a world that feels really chaotic.
Last night I finally broke down and took an anti-anxiety pill, which helped clear my head, while keeping me out of the kitchen and away from the food. I got on the internet, with the intent of looking for holiday gifts, which then turned into looking at cancer caregiver sites, where finally I found and article on cancercare.org about Anticipatory Grief. It was like a three paragraphs of telling me that it was totally normal that we were having all of these feelings. Unfortunately, the article also went on to say it would continue to be a very roller-coaster ride until the end. It does make me feel better to know that we will level out again. Until then, I'm going to cry when I need to cry, comfort when I need to comfort, and remember to breath.
One day at a time.
Wednesday, July 29, 2009
Count-down to my Birthday
My Birthday is on Sunday and if you know me, it is something I torture my family and friends with for months beforehand. I had four sisters, it was the one day that was I knew would be all about me. I look forward to it almost directly after Easter as the next true holiday. This year instead of the usual excitement and anticipation I have at my Birthday time, I have an overwhelming sense of sadness and dread. It has nothing to do with the 32 mark either, I've aged quite gracefully, it is in fact that this time last year, was when Avi start feeling sick. It became more than back pain and more of a concern that something was wrong. Avi was struggling with the fact that he knew something was way off beyond back pain and he had to go to the doctor soon. His employer kept delaying putting him on a health insurance plan, and so a doctor's appointment was delayed. He would put it off and off. It will be a month and a half later (on my sister's Birthday) that I would rush him to the hospital after he collapsed and cancer will become the center of our little world. I am not discounting the lessons learned, the growth that happened individually or together. Nor do I take back all the laughter, hand holding, singing to each other, hugs or kisses. I feel as though for this year, my Birthday is kind of tainted and I do not want to celebrate the past 'cancer' year of my life. I am also hesitant to celebrate looking forward to the next year. At this point things are still so unclear I have no clue what it is I'm looking forward too. I just want it to be another Sunday. (maybe with a magically cleaned house?)
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