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 I watched this beautiful short documentary about a teenager named Zach Sobiach who died from a rare form of cancer. He knew he was going to die, everyone knew he was going to die and he lived with this knowledge with such grace. He used his time, while he had it. He was loved and celebrated by his family and friends. I believe he was sick for a few years.

I watched this documentary and then I saw a trailer for a movie about teenagers living with cancer and how they lived with the knowledge of their impending death and yes, that was just fiction but feelings of guilt resurfaced as I watched these two films.

There was never time to get to some peaceful place of acceptance. Ron talked about writing his thoughts on various topics and many stories for the girls, but he didn’t get further than an outline. I think he/we all thought there would be time, enough time, more time and I think that sitting down and actually writing would be accepting that he was going to die—even though there was no other possibility— and that was too painful, too hard.  When he became too sick to write, we talked about doing video. We did maybe 10 minutes of it but even that was hard to do. Although his mind was okay, the pain medicines took away some of his sharpest thinking and clarity and he knew it.

I could never say to the girls, until the very, very end, that Daddy was going to die. Even though it was terminal from the start, I thought that the odds were so slim that he even got cancer that why couldn’t he be one of the slim odds and, if not get better, at least live with it for a few years. His body was so strong. He was so healthy. He didn’t meet the characteristics of a typical pancreatic cancer patient. Why shouldn’t he be in the 5% (or fewer) of people for whom the treatment actually works? Yes, he was going to die but we didn’t know when.

I never lied. When we explained to the girls that we had to leave Jakarta we told them that Daddy was very sick and that the doctors were going to have to work with him for a long time. They thought maybe he could go back to the States and then return to us in Jakarta. We told them that it would be best if we were together and that we wanted to be with the rest of the family, too so we had to move back as a family. When had a procedure, I explained what the procedure was going to do—open up a bile duct, look inside Daddy’s body. When he took meds I never said that any of the medicines would fix or cure the cancer. I told them that this medicine called “chemo” was going to try to shrink the tumor or that pill was to make Daddy’s pain or nausea a little better. When he was on TPN I told them that Daddy’s body couldn’t tolerate much eating so we were giving him IV nutrition.  Towards the end, Sophie realized and said to me, “Mommy you always say that the medicines are to make Daddy feel better but you never say  that they will fix him”.  I looked at her and slowly nodded. She cried.  I know she was beginning to understand. I didn’t have the courage to tell her that he wasn’t going to get better. That certainly would have been an opportunity. 

The girls were only 7 and 9 years old. I felt like I had to protect them. I couldn’t deal with the reality and I felt like it would be unfair to leave them with their Daddy’s death sentence hanging over their heads.  The crises were coming at us hard and fast. There were so few moments of calm.  I spent so much time just reacting to Ron’s needs and my own full out terror and grief.  We tried to keep things stable for the girls.  I know that I was doing the best that I could at the time. I do know that --yet I feel guilty. Could they have handled the news? Would they have spent time with him differently? He didn’t want them to change their schedules or miss time with their friends. We’d put them through so much in such a short time by pulling them out of school, moving overseas, putting them in a new culture, a new school, new language, etc. and then returning home in emergency circumstances. Ron badly needed a procedure and we were determined to have it done in the US.  It took us three moves to get back into our house that was rented out to tenants.  All this while being re-diagnosed/confirmed and trying to decide on doctors and treatment plans.  And all that took place within the first 4-6 weeks after the first diagnosis.

They loved their Daddy and they know he loved them. We tried to give them stability amidst total chaos and I think we did that.   Now when they cry and worry that they will forget their Daddy I question myself. I questioned myself at the time but I could not bring myself to say more than I did.  Some families tell their kids upfront that the parent is going to die.  We knew he was going to die and unless he got run over by a bus, the cause of his death, but not when –the oncologist gave us that line about the marathon, not a sprint and he would talk about next year. I focused on that and prayed to the universe that we could have a year, or maybe even more.  I told Ron to focus on his 50th birthday.  He didn’t make it to his 48th .  I thought there would be more time, the right time to tell the girls. They were so little.  I thought we’d have some weeks or months in home hospice where they would know that he was dying and be able to spend peaceful time with him. Maybe I am watching too much TV/movies.  He was too sick, to in and out of the ER, in too much pain towards the end.  There were so few plateaus, never improvements and the plateaus were only apparent when things got worse and things went downhill so quickly.  We thought there would be periods of time when he got a little “better”. There were really only moments where he felt okay, not days and weeks.  There were almost no days where he felt normal.

So I ask myself, did I do the right thing? I am trying to figure out a way to let go of the guilt or the worry that I could have done better for them.  I don’t think I could have done any differently.  I couldn’t make it better for Ron. I couldn’t’ make it better for the girls and I couldn’t make it better for myself. I could not fix this. Oh, how I wish I could have fixed this. All I could do was love them and show up for them. I hope it is/was enough.

 

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Comment by hendrixx2 on May 25, 2014 at 12:45pm

Hi Missing,

I believe it is only natural that we question ourselves on things like this which are associated with our partner's death; it is something which I don't think we can be too hard on ourselves about. Your last few lines contain what I have come to take as my approach altho our children are much older...try  to love them and be there for them, wishing you Peace and Healing...

Comment by MissingRKK on May 22, 2014 at 6:33pm

Dear Jen, thank you so much for your kind words and support. I just read your post at a moment when I needed a virtual hug so thank you!  HUGE hugs to you and I am sorry you are in this club, too.

Yeah, I couldn't/wouldn't wish this on anyone else either.  I recently stopped questioning why. I don't understand why it happened, but I have surrendered to the fact that I will never have the answer to that. And I also realized that even if somehow I could have an answer, it wouldn't make it better--it wouldn't make Ron less dead. You know what I mean?  Hugs!

Comment by Gaining Strength on May 22, 2014 at 5:51pm

Dear Missing RKK, There is so much pain in this post. Pain that I get. I too wonder if I could have done things differently. My husband never accepted that he would die when he did. We knew of other people with the same type of cancer who are still alive. However his cancer was very aggressive. The oncologist said she hardly ever saw a patient with high fever caused by the cancer even though she knew that it happened rarely. These fevers would come on at the time the cancer is most active. that was my clue. Everyone at the emerg was always looking for an infection but I knew... I had to  be quiet, say nothing until they were done with their testing. I did not tell too many people that he was getting worse because I could not bear their reaction. I told him to tell his family but he refused to do so. He did not want anyone thinking "negative thoughts" around him. Therefore we could not have that "end of life" discussion I now wished we had had. I cannot imagine how you managed to bring your young girls and sick husband  from Jakarta to the US, find specialists, new place to live, deal with children's  culture shock, language issues, and all the other aspects of this experience. I have been through this cancer experience twice, with MOM and husband, and it is all consuming even when the rest of your life is in order.  You have done a hell of a job keeping control of the situation. You need to let go of all negative feelings and concentrate on yourself and the girls. I have read your other posts and I know that you are trying very hard to keep up with their activities and to give them a normal life as if their Dad was still here. Your husband would be so proud of you. I think you are remarkable and I wish that you never had to deal with this pain but ??? I always ask myself "if not me then who?" Who would I wish this experience on? There is no one that I hate this much to want them to go through this even though there are those times  I think many people are more deserving of this experience.  Your circumstances were particularly difficult. You now have a lot of experience in crisis management.

Comment by Patience (Diane) on May 22, 2014 at 8:16am

Hi Carrie, you express beautifully the thoughts of many of us ... impending doom.. or maybe he'll be OK for a while... how long?  even the doctors didn't know..  The most often used phrase by the doctors toward the end was .."well, we don't have a crystal ball.."  I asked the doctors how long they thought Wayne had.. the answer was "weeks to months..."  (he actually had at that point 6 days...)

Please know that you did the very best you could.. under impossible circumstances.. ((((hugs)))))

Comment by MissingRKK on May 22, 2014 at 7:18am

Thank you, Wildflower. That really does help. I think I thought that the idea of impending death wasn't very comprehensible to young children as well as what you describe as the fact that we didn't know what was going to happen each day or how long he could live and we did try to just live each day. Yes, I just re-read your post. Yes, you just gave me a light bulb moment: We didn't want to live waiting for his death. I think that describes what i did not want to do to the girls -- or to Ron and myself. We just wanted to live while he still was here.  Not make them wonder every day if there was going to be a tomorrow. Thank you, Wildflower. HUGS to you!!

Comment by wildflower on May 21, 2014 at 8:19pm

I'll share what a doctor told us.  Hope it helps you.  My husband's cancer doctors told him people respond differently to treatment and he could live 2 yrs or 12 yrs he could not predict but there was no cure.  When his other doctor met with us he told us to live in the moment and not to make up scenarios.  We did not know what the future held and we would relive in our minds these scenarios that we created.  He said the past is over and to live in the moment.  My husband said our plans were to go for lunch after his appt.  He said no right now you are here and you are shaking my hand.  He was very kind and it brought tears to my eyes.  We tried to live in the moment and take whatever time he had left.  Yes it was hard and it was sad but we tried our hardest not to be waiting for death but to live what time he had left and to enjoy for few precious moments.  So no I don't think you should feel guilty for not telling the girls.  Because they had what time was left to share with him.  And yes I know what you mean about the plateaus.  when I look back the time I thought were the valleys were actually the plateaus.  No it never got back to the old normal but I cherish the time we had together.

Some may say we were in denial but I did not want to spend what time was left talking about and reliving the bad times just wanted to live our life.  hope this helps.  Not sure if I expressed this clearly.  I'm sure it was enough.  All you could do was your best.  Take care.

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