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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Solving Problems in Bed

Did I get your attention with that title? I can’t wait to see what kind of followers I get this week- lol.

Those of you who have read Bitter and Sweet may remember the story about Tim and I purchasing an adjustable king-size bed. When he was sick, he couldn’t lay the same way so he slept for several weeks on the recliner in the living room. After a bunch of research, we purchased a new bed. We opted for a split bed so that each of us could move the bed up or down and not bother the other. We thought we were pretty smart.

We were so excited the first night to be able to sleep in the same room again. However, we learned almost immediately that the split bed was a bad idea. What it did is make for a very uncomfortable crack down the middle of the bed. You either had to sleep a mile away from each other, or both squeeze into a twin-size bed.

I did some research on line and of course there was actually a product for such problems. I spent about $80 for a fleece piece that you put over the center of the crack and then it straps around the mattresses. That created another problem. I had to find sheets on line that you could buy separately. We had extra long twin fitted sheets for the mattresses, then had a king top sheet. With the fleece down the middle, you couldn’t have separate fitted sheets so I had to buy king fitted sheets. What a pain in the butt.

And it didn’t work. The fleece wasn’t very wide and all that happened was it would get pushed down the crack in the middle. Then when Frankie started coming into bed, he purposely pushed the mattresses apart and made a cave for himself to sleep in. Problems.

After Tim died, I tried a couple of times to put the bed on Craig’s list. Never even got offers. Can’t trade them in cuz the stores won’t take em back. While it’s adjustable, it’s not a hospital bed as there are no rails. Can’t really donate them to Hospice or anything. So I just keep living with it.

Yesterday, I decided it was time to do something about it. Why yesterday did it become urgent? I have no idea but I just get that way sometimes. A friend told me about those foam mattresses you can put on top. I thought that was a brilliant idea. Off to Kohl’s I went. Brigitte met me there as she has the charge card and all the coupons. We found what we were looking for. For a cool $580, I could solve my bed problems.

I laughed out loud. Ain’t no way in hell I’m paying that. Could get a new bed for Peter’s sake!

Of course, you have probably gathered by now that Brigitte is the world’s best problem solver and need meeter around. She called her husband and he said he would come look at the bed. He could probably build something to keep the mattresses together. Then I would just have to special order a mattress pad cover and try to solve it that way. Sigh.

Then it hit me. Why don’t I just trade beds with Frankie?

When he got home from school I asked him and he could care less. He’s never in his room anyway. Both he and Colin sleep in the guest room. Go figure.

So Colin helped me drag that bed upstairs with all the mechanics attached. It took about an hour and I was dripping in sweat. And of course that started the next seven loads of laundry for all the bedding. And I wouldn’t want anyone to know what my floor looked like once the bed got moved. Yikes! So there was more cleaning…

My room looks so much bigger now. Frankie’s looks so much smaller. But I don’t have a crack down the middle of my bed. In the process of all this, somehow it became some kind of symbolic moment. Frankie hardly ever sleeps with me now. And it felt like Moving Forward. Putting the past to bed, so to speak.

Of course, I’ve almost fallen twice already. Once when I went to get up, and once when I sat down to put on my socks. It’s much lower and it’s obviously going to take me a long time to adjust my equilibrium.

Anyone know how to solve balance problems?


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Crying

So I cry, probably more frequently than other people. I read somewhere that the tears that come from joy or sadness are of a different chemical makeup than other kinds of tears (like from onions, wind, etc.). Tears from emotions supposedly have healing elements to them, so there is truth to “feeling better after a good cry.” I should be feeling pretty good after 46 years of crying 🙂

Today I lost it in Wendy’s parking lot. Brigitte was with me and we were doing our usual running around to promote the book. Her latest wild (and looks to be successful) idea is that we need to get into colleges. The book could be very helpful in philosophy classes that discuss death and dying, and also in medical classes that talk about patient care. Today was our first meeting at one of the campuses here in Buffalo.

Overall, things have been wildly successful. The article comes out Saturday in the Buffalo News in their new section called “Refresh”. AM Buffalo airs on Monday and I will be on that in the second half of the show. I am awaiting an interview that will be in the West Seneca Bee, hopefully next week. And the big launch is going to be Saturday. The details are coming together and it’s going to be a smashing event.

So why the tears? God only knows. I’m just plain exhausted and overwhelmed. Can’t get everything done. But there is also an emotional element. I know that Tim would be thrilled with this book. I know it can help lots and lots of people. But there is still this awkward feeling that nags at me. I am getting “noticed” and being “successful”, largely because my husband died. I know he didn’t “die in vain” as they say. I know this is doing something positive with this experience. But nevertheless, he is gone. And we all miss him. So no matter what good happens, it is still “wrong” too.

Just hit me while I was typing. It’s the epitome of “bitter and sweet”, is it not? Guess if nothing else, I pick good titles!!


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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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Be Careful What You Wish For

So it has been an exciting, emotional week. Me? Emotional? I have been recognizing that as the book draws closer to the launching date, I am getting more and more intense. Crying at the drop of a hat. Sometimes the hat doesn’t even drop and I cry anyway. I have theories I guess. The subject matter is intense and grief-ridden. That’s one thing. When you pour your heart and soul into something for 13 months, that’s pretty intense. That’s another thing.

On Monday, Brigette was here working with me and we had a conference call scheduled with our Hospice contact. There was some question as to whether they were going to be able to be involved or not so this was a crucial call. They came through with fulfilling our highest hopes. They are going to handle all the press releases which is a huge burden lifted from our shoulders. The release will go to radio stations, newspapers, and tv stations. She mentioned that we would probably get at least one tv station to cover the launching.

They are also trying to get a tv personality to emcee the event and get us on their tv program the week before the launching. We answered “okay” as if this sort of thing happens to us every day. I was stunned and silent, terrified.

On Tuesday, we received a review of the book from a big, important dude at Sloan Kettering in NYC, the #2 cancer treatment center in the USA. We asked for a two sentence blurb. We got a two page review. And it was GLOWING. And more importantly, his words indicated that he truly got the whole book- he just plain got it. He got what I was hoping readers would get from it. He is a total stranger too. No bias on his part. I sobbed. Like a baby.

Tuesday afternoon I made contact with Roswell (Cancer hospital in our area). Given the other events of the week, their person was like “thanks for letting us be a part of this!”…. She was thanking me and excited about figuring out how they could help. What??

This all set me into a tailspin. Isn’t this what we have been working our butts off for? Then why I am numb? On Wednesday I talked with my daughter Emily. I decided she has a very wise, old soul. She listened to everything, including the review. She calmly said she knew exactly what my problem was. My problem was that my world just got bigger. Much bigger. My problem is that I’ve never experienced this level of success in my life before. She calmly said she now knows the purpose of why her father died. Now she knows that he is taking care of Frankie and I. We are going to have enough to live on and we are going to be able to take care of our house. Anyone that knew Tim, knew he worried about that. That’s why he worked til two weeks before he died.

Emily. She’s brilliant. She put it into words for me. It took some of the terror away. Today I had my spiritual direction session and we discussed it further. She cried too when she heard about the events of the week. We talked about how I don’t know how to wear success. I understand hard work, but I don’t know what to do with having it pay off.

Don’t get me wrong. When I wake up from the dream, I will be grateful. I figured out how to be grateful in the face of disease and death. I just have to figure out how to be grateful in the face of positive happenings. But careful for what you wish for, it just might scare the pants off you!