Help for Healing

Bitter & Sweet, living daily with grief


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Guest Blogging

So leave it to Brigette. With her expert researching, she found an excellent contact in California. She is a medical expert, involved heavily in writing, blogging, and connected everywhere regarding issues related to end of life. Frankly, she appears to be quite brilliant :).

Anyhow, I will be on her blog next week and we are looking for many more opportunities to work with her and her numerous programs. She suggested I post the same blog here. I know it is information you already have read several times, but I will include it anyway. I was terribly honored when she had this to say about my entry submission: “This is probably one of the most moving accounts I have ever read. Thank you so much for sharing your amazing story. Your husband is proud of you.” Her comments made me cry.

Stay tuned as Brigette will be posting the links to Dr. Monica Williams-Murphy’s sites and connections. (Her blog is called “ok to die” which is a great title!) Here is my entry:

The name of my book is “Bitter and Sweet, A Family’s Journey with Cancer.” Here is a brief summary. In April of 2010, my husband Tim began to have some strange sensations in his side. On May 7, we found ourselves facing stage IV gallbladder cancer rather than a simple gallbladder removal as planned. Five months and one week later, my husband died. Those five months were the most difficult and horrifying time of our lives. It was also an extremely beautiful time for us. We found ourselves using the phrase “bitter and sweet” so often during those five months, that it was an obvious title choice.

Our lives had been full of paradoxes. How do you fight for your life and yet accept mortality at the same time? How do you maintain optimism, which is necessary for health, and prepare for your death and get your affairs in order? How do you understand God’s love and compassion, and yet experience cancer and suffering?

It’s a sad story, but I promise you, our story is also filled with humor, tender moments and hope, alongside the ravages of a cruel disease. When life hands you lemons, you can pucker up and make a sour face, or you can make lemonade. I think we did both.

Tim and I had a tough marriage. We spent the entirety of our ten years together in counseling. We made progress, but happiness was always a struggle. After diagnosis, we actually worried that kind of stress could be the end of us. Tim was a “glass half empty” guy and I thought for sure he would be angry and buckle under his prognosis. Boy, was I wrong. What I witnessed instead, was the total transformation of a man, a woman, a marriage, a family, a community. While things were obviously horrific battling a vicious disease, we also experienced the most amazing bond and love that we had spent our lives hoping for.

For the first time, we read together, appreciated each other fully, and reprioritized what was important. We started walking our dog together. When Tim got too weak, we took the wheelchair. When I got pneumonia, I would push him halfway and then we would switch positions and he would push me back. I will never, ever forget those moments.

Even the most simple things had greater meaning. Tim would talk about enjoying a hot shower and feeling the sensations of the warm water on his body. He would walk around our yard and come in with tears in his eyes and talk about the beauty he was able to take in. For the first time, he went into work late on our son’s first day of school because he just didn’t want to miss it. New priorities, new appreciation.

When you stare mortality in the face, it is amazing how quickly things can change. The things that you spend your life worrying and fighting about are suddenly rendered ridiculously less important. The housework isn’t so important. Money isn’t the biggest stressor. And I had the joy of watching Tim rekindle and reconcile family and friendships that had been forgotten or stuffed away in a corner. Sometimes that meant confronting painful things. Tim was a peacemaker and avoided conflict. But I saw him stand up for me in ways that I had not seen in the decade we had been together. Why? Partly because he saw me grab a hold of fighting for his life, his comfort and well-being in a way that he had not seen either, but that he was clearly worthy of.

Why do I continue to respect and admire my husband three years after his death? Because in spite of his fear, he faced his ending and he did it remarkably well. He chose his cemetery plot and designed his headstone. He wrote birthday cards for his eight year old son until he turns 18. He wrote wedding cards to this three unmarried sons so he could share his love for them on their big days. Amazing.

So many others were changed as well. We learned to be receivers, to let people help us and the results were astounding. People brought 90% of our meals, cleaned our house, ran errands, entertained our son, put up a fence, helped with yardwork, and even did our shopping. The benefit was that we were able to concentrate on Tim’s appointments and sneak in those walks or spend time with our kids. The benefit to everyone else? The church learned how to rally around their people. The community rose to the occasion. Here is what people said: “Please don’t rob us. We WANT to help. We can’t do anything to stop what is happening to you. What we CAN do, is provide a meal.” It was actually truly and genuinely important to other people, to feel like they were contributing to our lives. That is powerful.

I want to share the last paragraph of Bitter and Sweet. It is actually what I wrote for the bulletin at Tim’s funeral.

“While cancer is a cruel and clever disease that wreaks havoc in your life, my husband and I were able to find and experience so many gifts, treasures and healings in our lives. Since his diagnosis, we have truly been transformed, as individuals and as loving, lifelong partners. Our spiritual lives blossomed and grew in ways I would not have thought possible. And so much of that happened because of the loving, compassionate, strong hands, arms, and feet of the people of God. No one would deny that we are truly the luckiest people on earth, even with the loss we suffer. Few others could boast the kind of dedication and support we have felt poured out upon us. ”

I will never tell you that the cancer path isn’t hard, difficult, gut wrenching. But I will always say, there is a gift in every challenge. Your life can be profoundly blessed and changed in spite of your difficulties. Facing mortality can have a positive, profound impact on your life, if you choose to let it.


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Girlfriends…A.K.A. Ya-Yas

October 14 was the three-year marker of Tim passing. Three years! My sister called me and said Dad was sure it was only two years. The pharmacist said he thought only a year and a half. My doctor was shocked and thought no more than two for sure. So we all agree on that point- it’s hard to believe it has been that long.

My kids did not want to anything special to remember the day. Quite frankly, the boys are more than happy to be left alone most of the time. So I decided to get away for the night. There is a lovely bed and breakfast about a half hour away from here. It is a church that is being remodeled. There is a separate building with a large kitchen, a large living room area, and 5 quaint bedrooms. If you can get enough people together, it’s very reasonably priced. We ended up with nine women and had the whole building to ourselves.

I brought games and movies but there was no need. We just chatted the whole time. From 2:00 PM on Sunday, til we left at noon on Monday. We talked about husbands, boyfriends, fathers, parenting, etc., etc.. It was a great way to get away and not be alone when “The Day” came. One woman is a widow that I met through the book. She is my age and has SIX kids. Can you imagine? She is so so so my hero.

I know Brigette very well and on Friday I was doing yard work and a thought hit me. I called her right away and told that if I knew her (which I do), I was sure she planning something with my friends to remember Tim. She is the one that spear-headed the cherry tree last October. I told her I didn’t want to be “The Widow” this weekend. I just wanted to be one of the girls. She respected my wishes and there were no speeches or presentations.

When we got home on Monday though, I had a beautiful surprise. She had registered a star in Tim’s name. She said in my talks I often talk about how Tim is still providing for us today by his story selling books. So she had it dated on March 16, 2013 when the book officially was launched. We did this in my niece’s honor back in 1990. It is the coolest thing. It comes with the coordinates so now I’ve gotten this great idea that we should try to actually see it. Brigette is researching planetariums to try and see how we could do that. I don’t think we can pull it off by Tim’s birthday but I will keep you posted.

Thanks Brigette. As always, you’ve outdone yourself. And thanks to all my ya-yas. I’m a pretty lucky girl!


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Interview Questions Part 2

I’m up at 4 AM and I’m cleaning out my blog page and found this post I never published. It was back from October so here it is:

For those of you that follow the RidingBitch blog, I apologize for the repetition. These are questions I answered on her blog about the process of writing a book. Hope you enjoy!

What has been the most challenging aspect of writing your book?
It feels sometimes like “grief brain” is permanent. So accomplishing anything can be hard on some days, much less a huge project like writing a book. Two things were hard. One thing, were the days when a wave of grief hit. I could talk/write/process for days and even weeks like I was just telling someone else’s story. Then for no reason that I could identify, it would be a crying, grieving day and the subject matter was larger than life. The second part was learning new things. I would have given up at least a trillion times if my dear friend Brigitte wasn’t working with me full time. She does all the research and information finding. She has the patience of a saint coupled with a brilliant mind!

How did you secure publishing?
We have actually “self-published”. First, we had to form a publishing company, which meant forming an LLC. It is called Baby Coop Publishing, LLC. Once you do the research, it’s tedious but not difficult. You fill out forms and then do legal notices in the paper. Total cost is about $350. After that, we did our research (ok, Brigitte did) and came up with what we thought were the best options. Lightning Source is the company that distributes our softcover book. All of the files were downloaded to them. They have certain companies they distribute to, but it’s most of the biggest in the industry. When they get orders, they print and ship. It’s called “print on demand.”
For the ebook versions, we went with a company called Book Baby. We are still in the process of downloading and revising with them. I thought this would be easier, but it has different challenges. Every reader (Nook, Kindle, Kobo, etc.) looks different. So it’s very hard to design something that looks good in every version. We are hoping to have that released within another two weeks.

What do you hope readers will get out of reading your book?
My dream was that my book will be useful and helpful to people in the same way that other books helped us. You have listed a bunch of books and what you have gotten out of them- I’d like to be on that list some day  For a person struggling with cancer, they can find inspiration in the way Tim dealt with his illness. For a person handling the tasks of being a caretaker, it is full of helpful ideas of how to be a patient advocate. For loved ones and family, it is full of practical ways of how you can truly be a support to the people you care about.

What do you hope to achieve with your book?
The previous question answers the more spiritual goals of the book. On a practical level, I would love to pay off the mortgage of the house before my social security runs out! But the reality of how much money you make on a book is very small indeed. When you realize how many books you have to sell to really make a living, it’s almost impossible.
A much for practical goal for me, is that I am hoping that the book will help generate more referrals to my counseling practice. That is my main profession and passion and I will be doing that for many more years than I will be writing books.


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Meant to Be

My foot has healed remarkably fast. In one week I was able to walk normally. I couldn’t believe it because the wound was so deep and it hurt so much! I’m very grateful. It’s amazing what you take for granted when all your body parts are functioning as they should.

What about my focus? I will admit it’s been a struggle. The blues have gotten me down more than once or twice. But I have been truly trying to wake up and remind myself every day that I have a bigger purpose. I have work to do. I have a mission.

For the first time in a long time, I sold a book at a book signing downtown. She was a cancer survivor. More importantly, I met a woman who lost her partner in December. She said she couldn’t possibly read the book yet but we ended up chatting. She was frustrated by the lack of grief groups in our area. She didn’t call me like she thought she would, but the conversation was meant to be. After we talked, I asked her if I could give her a hug. I really wasn’t sure she was going to say yes, but I was pleasantly surprised when she did. It was a teary and meaningful encounter. I glanced back at my ever-faithful Brigette who said “Do you still think it’s not worth it anymore?” Smart aleck. She knew I was back in the game.

I was at the fair and sold four more books that weekend. Again, more than I’ve done in a long time. But more importantly, I gave some away. Wegman’s generously donated money to me so that I could distribute books to people I felt needed it. I also have used it to pay for grief counseling for people who can’t afford it. Anyhow, I met a brave woman who was currently battling her third bout with cancer. I gladly gave her a book and told her she was my hero.

Then another elderly woman stopped by and said her husband is dying. She had asked him if it was ok if she escaped to the fair for a little while. She started to cry and told me that they had just sold their camper and it had broken her heart. I couldn’t believe it. I told her I had just sold my camper and that I had cried my eyes out. We had a very long hug and shared some tears.

I’ve got my mojo back. Foundations are being repaired. My mission is sad in some ways, but I love those encounters. And I’m sure it’s no coincidence that they started happening again after my session with Ellen telling me to get back to the basics and remember my mission. Thanks Ellen and Brigette. And thanks God for breathing life into all of us.


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Flashbacks

So I’ve started writing the second book in the last couple of weeks. The title is “Life After Death, on This Side of Heaven.” I found quickly that I have to limit how many days a week I work on it, and how many pages I do at a time. I’ve forgotten how difficult it is to encounter all those journal entries for the “first” time since I’ve written them a couple of years ago.

I’ve found myself saying to my friends and family a lot lately that its been two and a half years and I think I’m still stuck in the same place. They vigorously shake their heads no and say that I am not anywhere near where I was back then. Now that I’m reading what I wrote back then, I know what they mean. Man, was it hard then. The “bitters” sure overpowered the “sweets” on a daily basis.

I just reworked a section about Frankie. I will give you a sneak peek so you can see what I have been remembering in May of 2013, three years after Tim’s initial diagnosis. This was originally written in January of 2011.
__________________________
A half hour later when we (Frankie and I) were laying in bed, I was almost asleep and thought I heard sniffles. I asked Frankie if he was crying… he answered with a downpour of thoughts and feelings that broke my heart.

“Yes, I’m crying. I miss daddy soooooooo much!

“I hate cancer! People should be able to smoke or do whatever they want without having to worry about cancer.”

“If dad had been here tonight, he would have yelled the whole night because we were so loud.”

“If daddy were here right now, he’d be laying right next to me and I would lay on top of him and be his Frankie blanket.”

“I just wish daddy were here right now.”

“There’s so many changes, so many changes.” I asked him “Like what?” and he paused and then said “Everything!”

“It’s so sad that daddy missed seeing his granddaughter.”

“Daddy was given the wrong medicine. Maybe he would still be here right now.”

My heart broke, but I was also beyond relieved that he was showing emotion and opening up to me about it. I let him know the smoking didn’t directly cause daddy’s cancer. I reminded him that he quit smoking as a present to Frankie for his 5th birthday because he loved him so much. I told him that daddy wasn’t given the wrong medicine, the chemo just didn’t work because the cancer was too strong.

But mostly I just laid next to him and cried with him, telling him how much I missed daddy too.
___________________________________

Kinda took my breath away. We ARE doing ok. And we ARE smiling more these days. But it’s ok to remember too.


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You Just Never Know

So when I thought about writing Bitter and Sweet, Brigitte had me start reading books on writing books. There seemed to be an assumption in them that authors will write more than one book. I would explain to Brigitte that I wasn’t an author by profession and I would only be writing one book. She would just plant a seed with something like “Well, you never know.”

Then I started writing Bitter and Sweet, and I kept fighting myself. I did not WANT to write more than one book, but it was becoming very clear to me that my story was really two totally different topics. Bitter and Sweet became a book about facing a terminal illness, being a caretaker, a patient advocate. That really is different from the grief you deal with afterwards. In spite of my best efforts, I had to admit I had two books in me.

In the meantime, Brigitte keeps planting seeds about the next book after that and I keep reminding her there are only two books. She finally said that she already knows what the third book is- a book about all the stories that come to me because of the book I’ve already written. Damn her! That’s actually a good idea. And she was smart enough to say it to me the day after I heard this story.

The gentleman gave me permission to blog about this provided I took the usual care to change names. He was a contact I met through marketing bookstores. Some stores want to read the book before they will agree to try and sell it and he was one of those people. I called back to follow-up with him and ended up having a lengthy conversation with him.

He had only read about 90 pages of Bitter and Sweet but his first comment was that the title was perfect. He was weepy throughout his tale. Turns out he lost a son in an accident, and then his wife the year before Tim died. It happens almost every time I talk to someone about my book- they have a story to share. Who hasn’t been touched by cancer/death in some way?

He said the book was going to take him a while to finish. Generally, people either say they couldn’t put the book down and finished it very quickly, or they say it touches very close to home and it will take them a while to slowly digest it. He said the book was causing him to think about things that he has pushed down for awhile and that he believes God will use the book to help people heal. Wow. That would make my heart soar.

Then here’s the kicker. He was reading the section of the book where I described how Tim and I bought an adjustable bed. It was a big deal at the time because after he was diagnosed, we weren’t really able to sleep in the same room anymore. Tim had to sleep more upright and had great difficulty. So it was a day for celebration when we got the new bed and could lay side by side again.

The night that this man read that section, he had a dream about his wife. It was a very vivid dream and he felt her laying next to him. When he woke in the morning, he was heartbroken to discover that she was indeed still gone. But he had a beautiful night with her. Double wow.

That one story alone makes all the months of writing the book worthwhile. What a gift to him. What a bigger gift to me. Please let me know your story!


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GUEST BLOG PART 2

Hopefully you caught Part 1 of the “interview” with RidingBitch blog writer Niva Dorell Smith. She has answered the same questions that I did on a previous blog. They hold profound thoughts so enjoy.

Q: Had you had any previous experience with caregiving before your husband Kaz was diagnosed with a Stage IV Glioblastoma in 2010?
A. Yes and no. My mother had been in and out of hospitals for much of my childhood. In fact, her health is why my family moved to the United States from Israel when I was five years old. She had several open heart surgeries and other major procedures from that time until her death 17 years later. I was never her caregiver because I was too young, but I had grown up with a familiarity with hospitals, doctors, nurses, and the fear of possibly losing a loved one. When Kaz first started having symptoms, then was diagnosed, I think he was surprised by how calm and steady I was. Before then, he had always been the calm, steady one between us. Of course, inside I was a ball of emotions, but on the outside I was calm.
Once things progressed with him it was a different story. I was still relatively calm but the stress of the situation sometimes got to me. I found it very challenging to be so powerless, to watch him suffer and not be able to do much about it, to have opinions on how to deal with things and not be able to make them happen. The patient is in charge of his own body, as it should be. I used to think of my father a lot, and my older siblings. They were the ones who took care of my mother all those years.

Q: Are there any specific things that you would advise caregivers?
A. Well, like you I would suggest having a notebook and writing everything down. The caregiver must be quite organized because there’s a ton of information to keep track of and the patient usually can’t think straight. I found myself relating to this aspect of caregiving a bit like film production. My skills as a director, production manager, and assistant editor – all jobs which require a lot of organization, communication and the ability to function efficiently under pressure – came in handy when I became a caregiver. I was an efficient caregiver and a strong advocate, but emotionally I was sometimes a nervous wreck.
I would also recommend support groups. Kaz and I had different opinions about this. We went to a brain tumor support group twice, once in the beginning, once in the end. The first time he rode his motorcycle and strode in with his helmet and was pretty uncomfortable with the whole thing. The second time was several months after his motorcycle accident and about 7 weeks before he died. He was on a cane and had been depressed. His mindset was completely different and he enjoyed the group much more. I always wished we had kept going to that group because we would have learned a lot and been able to connect with other brain tumor patients and caregivers. I ended up going to a caregiver’s support group, which was also very helpful. It was the only place where I could vent honestly about my feelings and be heard and understood without judgment. I also learned a great deal from the other caregivers, some of whom had been doing it for over 10 years.
Having down time is also important. Being a caregiver can be extremely stressful and challenging to get any time away from the situation. I took up swimming for a while, which was great. But you can do lots of things – yoga, walking, meditation, retail therapy. Whatever gets your mind off things or allows you to relax, if only for a few minutes a week. Your brain and body will thank you.
Lastly, I would urge caregivers to not be shy about asking for help. People often feel helpless when a friend or family member is sick. They want to know how they can help. So, if you need help, ask for it. Except for the last 6 weeks, I worked full-time the entire year Kaz was ill. I could never have managed without the help of our friends and family. We were also very lucky that our respective bosses were very supportive. This made all the difference in the world.

Q: What was your experience of caregiving for your husband like?
A. Stressful. Beautiful. Scary. Frustrating. Profoundly emotional. I once told Kaz that I felt honored to be with him during this very important period of his life, to take care of him and be his partner, even though it was challenging. The stress could have torn our young relationship apart, and almost did, to be honest. But it also brought us closer together. Dealing with someone’s health is an intimate experience and scary too, because it makes you face your own mortality. We loved each other enough to stick with it and look down the barrel of the beast together. It was odd to fall more in love while knowing we would soon be separated forever. Odd, painful and beautiful, all at once.

THANKS NIVA. I was moved reading your responses and felt like yelling out AMEN SISTER!! Stay tuned everyone. There is more to come!


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Introducing….

I have been following the blog Riding Bitch for some time. I recommend you check it out too! (Her blog link is listed on the right below). We have recently decided to do some guest interviewing with each other as we have a lot in common. She posted an interview with me last week. Here is some information about the author.

Niva Dorell Smith is a screenwriter, director and producer. She has directed award-winning short films, music videos, television and documentaries. She has been an educator at the New York Film Academy and is currently a film mentor for the Make a Film Foundation, an organization that assists children with life threatening illnesses in making small “legacy” films. She is currently writing her first book about her experience of loving, caregiving, losing and grieving her late husband who died of brain cancer in 2011.

Q: Under what circumstances did you become a widow? And how did that lead to the book you are writing?
A: My husband died in May 2011 from an aggressive form of brain cancer at the age of 43. We had married only 11 days earlier when he was on hospice. After his death, I experienced the strange sensation of feeling both like a newlywed and a widow. We had both been through such an intense experience in a short amount of time (three years total as a couple, one with cancer), it felt unnatural to cease communicating with him. I was also suffering from post-traumatic stress, survivor and caregiver’s guilt. I had been writing the whole time we were together – in my journal, in emails, in letters I wrote while working abroad for a few months. Once he was gone and I was alone in the silent apartment, the writing intensified. I continued writing in my journal. I wrote him love letters. I wrote down every memory I could remember from our time together. I didn’t know what I was writing. I just knew that I had to get things out, and from losing my mother 20 years earlier that Time erases memories.
After a while, I started piecing bits together, recreating our story with a literary patchwork of descriptive narrative, letters, emails, text messages, voicemail and video transcripts. The result is a book currently entitled THE HISTORY OF US. It isn’t published yet but it will be in 2013.

Q: Do you think there is an audience for such a book?
A: I think there is an audience for almost any book, but especially one about a real couple going through an extraordinary experience. My book is an emotionally honest and very compelling portrayal of two young people who were thrown into a “tsunami” of challenges before they had even moved in together, and end up making the ultimate commitment. I think many people will relate to it, both young and old, sick and healthy, because ultimately it’s a great (and tragic) love story.

As I mentioned, I think Niva and I have a lot in common. Check out her blog!


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Thanksgiving

Almost every single morning I lay in bed and think… today is it.  Today is the day I will turn the corner. Today is a fresh start and a chance to do things well.  You just have to get up and claim it.  And I really believe its true, this idea of positive energy and creating your own life.

I don’t remember when it started to be difficult to get out of bed in the morning.  I honestly can’t remember life before Tim was diagnosed.  I don’t think I ever sprang out of bed like Tigger, eager to tackle the day.  But I also don’t remember laying in bed wishing I didn’t have to get up.  Wishing I wasn’t a grown-up with responsibilities.  Wishing I could just pull the covers up over my head for another day or two.  For sure I know I wasn’t laying in bed, desperate to not be the single mother and widow that I am.

I guess some days it’s self pity.  But most days it isn’t really that.  It’s not that I feel sorry for myself or think “Why me?”  It’s just that I wish circumstances weren’t what they are.  I don’t want the responsibility of every decision on my shoulders.  Will there ever be day when someone will happily take on my life with me?  Will I be able to happily take on their’s in return?

 A day to focus on thankfulness.  I believe in it with all my heart.  I know I have a life full of love and blessings and amazing people.  I have a healthy, full of piss and vinegar son.  I know my attitude is mine to choose.  I know it.  I believe it.  I’m determined.

And yet, I’ve been upright less than an hour and I am full of tears.  And emptiness.  And sadness.  Shit, not again.