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Living Forward

Primarily journaling the medical adventures of Neal (stage IV colon cancer), with occasional updates on Benjamin, Jeremy and Matthew (CVID) intermixed. Despite several d[...] read more

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Living in Denial on Borrowed Time

Hello once again to our family and friends… I first need to apologize for not updating you in so long. My only excuse is my usual “I’m overwhelmed, exhausted, and just plain drained”… and yes, things have been busy in this crazy holding pattern we live in.

Borrowed time… that’s probably the best place to describe where we are these days. It has been said more than once that Neal looks awful  on paper and on imaging, but in person he still manages to look relatively ok. I say relatively because there have been many changes in the last few months. Advanced cancer and not being able to eat for 2 months will do that to a person. He’s lost a ton of weight, he’s weaker, he has more pain and nausea and other discomforts. His blood pressure and heart rate are lower than normal, and he gets winded easily. And he can be moody (me too!). But he’s still Neal…. He still has his sense of humor, and he still watches sports and Food Network 24/7 (I don’t know how he manages to do this without being able to eat).

Me, I think I have reached a place of denial. There have been so many ups and downs that it’s nearly impossible to really know how close we are to the end. Even his hospice nurses are not sure how long we will have since Neal is marching to his own drum on this one. I’ve been told many times by them that we may be getting closer and should think about returning to the hospice house, only for him to look better the next day and rally again. So there is a big part of me that lives in denial that we are nearing the end.

The rational side of me still knows it’s coming sooner than later, but I think I’ve finally reached a place where I understand that I won’t see it coming until it’s too late. Which if I’m honest, scares the bejeezus out of me. I’m a planner… I want to know when the pain and suffering and fear and anxiety will be relieved for Neal, for our boys, for me. And I don’t like the answer. The only answer I have is that things will get much WORSE before anything gets better, and I’d rather live in this horrible holding pattern than reach that place and have to say goodbye to him for the last time.

In the meantime, we plug away. We KFG (Keep F*cking Going)… because it’s all we can do. Kids still need to be fed and bills still need to be paid. We make the most out of the special days that we are able to still share, like our 22nd Wedding Anniversary on June 9 when we watched our wedding video (we were so young!) and Father’s Day, even thought he slept through most of it. Every day is a gift and we are well aware of that at this stage.

We continue to be grateful for the support of family and friends… Lesley and Russell who spend time with Neal almost every weekend so I can focus on filling my cake orders knowing he is not alone. He’s not been up to many visits lately so this has been very helpful. Friends who continue to supply meals or gift cards, or kidnap me occasionally to get out of the house for a while for a night out. There are so many of you that reach out to me personally and offer help and most of the time I don’t know what to ask for since I am so overwhelmed. Sometimes, all I want is a hug and to be able to whine for a little while! But every time I get a message offering  help, it makes me realize how loved we are and that is truly amazing.

With much love,

Michelle and Neal

 

 

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