January 19 was our last oncology appointment. Over the last few weeks Dave has continued to lose function, energy and strength. Moving is hard, standing is harder and walking is almost impossible without physical assistance. Talking has become more difficult, more so around word finding and expressing himself. Yes/No questions are the rule, but we forget often.
The treatments we have tried have been unsuccessful at stopping the tumor growth. There are no further treatment options available to him for a number of reasons. One being that he isn’t as mobile or active as he needs to be to flush the toxins from his system. Two being the remaining chemotherapy treatments aren’t effective on this type of cancer. Third surgery isn’t an option as it will only leave him worse off than he is now due to where the tumor is and what it impacts (Language including cognition and right side movement).
We are struggling with the frustration that everything we tried didn’t work, that no further surgery can be done due to where the tumor exists as it would cause more permanent damage and leave Dave worse off than he currently is. Dave is frustrated that his body has betrayed him and he is struggling with the hits to his pride as functions fail.
He turned 41 recently. This is not something that anyone expects to happen at this age. We don’t go through life expecting that we will fight our hardest only to lose the battle because of cancer or anything else that directly impacts life. It becomes increasingly hard to deal with when you feel the expectation that you need to support your family, that society expects you to be strong and be able to do everything needed. Letting this go is very hard, and is something that we are facing currently. Add to that the knowledge that it’s not going to get better, and you have a great recipe for depression.
We are connected with Palliative Homecare and have supports starting very quickly. Things like helping Dave get up and cleaned in the morning and preparing for bed at night are the focus currently. It might be more as things progress, but we have additional family around that can help with the during the day stuff. There is still a lot of pressure on me as Dave doesn’t want someone else helping him with some things that are more personal, but I need the help as I can’t do it all.
We are slowly dealing with the emotions of this news, the kids too, but are still able to do what needs to be done during the day. We are focused on making the most of what is left rather than when there isn’t any more time. We are still able to joke and laugh as we focus on the present. The future will take care of itself and doesn’t require the worry now.
We still hold a sliver of hope that Dave’s body will miraculously fix itself, but know that this is a very small sliver. This is something that I never figured I’d have to deal with in our middle life, but something you expect more towards your end of life. I guess this is just his. While we hoped for more we don’t regret the time we have had. This last year and a half has been rough with more downs than ups, but we have learned through it all as well.
It’s not over yet, there is still life within him, but it’s becoming harder. We hope to keep him at home, as long as supports exist that make it doable, for as long as we can.
This is one of the hardest things that I think I will ever have to deal with. Losing your husband, best friend, partner, father of your children and personal support is something I am just wrapping my head around. For Dave knowing that he is leaving the family to take care of itself when he really doesn’t want to is hard. Especially when you think that you have so much life left to live.
Please don’t ask if we are okay…we are and we aren’t. Please don’t ask what you can do to help…there aren’t tasks we can hand out. I need to keep things moving as normal as I use this as my therapy. Cooking dinner is sometimes cathartic, cleaning can be (though not always), and other daily activities help me feel like I can do this.
We are strong because we talk to each other about what we are going through. The kids and I talk about it regularly. Yes, it’s hard. We recognize that you all want to help, but right now we need to grieve the news and what we will lose before we can focus on what we need to move forward. Being there for our family to talk to, those that we are talking with, is very helpful. The kids need their friends to be understanding and supportive, which most are.
We are thankful for what time we did have and have been preparing for this eventuality as we started to see decline in ability to use the right arm and as the right leg got weaker. We are realists so while hard we are able to work through the anger and pain. This won’t be the last post, but they might become less frequent.
If you want to visit, please let me know. If you want to visit virtually we will be starting this next week in the evenings. We appreciate all of the support both in person and virtual through this journey. Thank you for continuing to send positive energy, prayers and anything else you do for Dave.
The Adams-Schlag Family 