I didn't really know that heartache ACTUALLY makes your heart ache. But I know now. It does. I am so sad, and Wes is so stinking positive. I just want to curl up in a ball under the covers and cry for the rest of my forever. Meanwhile Wes is busy researching, and figuring out where to go to get a second opinion, learning about treatment options, and being all pro-active. Of course he is. He is the most stubborn man alive, and right now, I'm so glad for it. Knowing him, his stubborn will take him far in this cancer battle.
It is utterly depressing to think of a two year survival time of being a good outcome and outside the norm.
We made a list of what I need to learn to handle for if/when he dies. One of the things on the list is to go over to Ratterman's funeral home and make some plans. Another thing on the list is to talk to a financial advisor. Another list item is finding out how much social security death benefits will be, and creating a budget. I want to do this before hand, and talk it over with him. He is so much better at that stuff than I am.
In my mind is the constant question: What will I DO? I'm one of those "lame" women who has never worked outside the home. I've been a stay at home mom all of my marriage, other than being in grad school for a few years. I graduated with my M.Div. in 1995. After that it was diapers, breastfeeding, teaching kids to read, cooking, playing at the park and endless loads of laundry. And then it was raising older kids, and cooking and endless loads of laundry. Now, it's a house full of teenagers, and cooking and endless loads of laundry. And no matter how much I do to try and get healthier and take care of my health, it feels like I am ALWAYS hitting a wall in that department. I still have very low energy, and quite frankly, I need lots of help. And my help is deathly ill now.
I keep looking at my wedding rings, wondering how much longer I will get to wear them.I've never been a widow before, and I'm not one yet, I know. But there's a good chance I will be. And soon. I am so sad.
How will I cope when my fibromyalgia is really bad? What will my children do?
I need to find someone who can teach Maia how to drive a car. And Eric, too, when he turns 16 next August. I'm going to push him to go ahead and get his license asap. Bethany is disabled and should not/does not drive,and for Ariana that is yet a year away.
Meanwhile, I'll be driving Wes to radiation and work daily for the next six weeks, or so. I should probably just focus on the NOW and stop thinking about the future.
We will be setting up a fundraising website this weekend, so that people can help us. Chemo, radiation, and brain surgery, is very expensive.
We put up the Christmas tree yesterday. Trying to be as normal as possible.
Oh, my heart aches.
It is utterly depressing to think of a two year survival time of being a good outcome and outside the norm.
In my mind is the constant question: What will I DO? I'm one of those "lame" women who has never worked outside the home. I've been a stay at home mom all of my marriage, other than being in grad school for a few years. I graduated with my M.Div. in 1995. After that it was diapers, breastfeeding, teaching kids to read, cooking, playing at the park and endless loads of laundry. And then it was raising older kids, and cooking and endless loads of laundry. Now, it's a house full of teenagers, and cooking and endless loads of laundry. And no matter how much I do to try and get healthier and take care of my health, it feels like I am ALWAYS hitting a wall in that department. I still have very low energy, and quite frankly, I need lots of help. And my help is deathly ill now.
I keep looking at my wedding rings, wondering how much longer I will get to wear them.I've never been a widow before, and I'm not one yet, I know. But there's a good chance I will be. And soon. I am so sad.
How will I cope when my fibromyalgia is really bad? What will my children do?
I need to find someone who can teach Maia how to drive a car. And Eric, too, when he turns 16 next August. I'm going to push him to go ahead and get his license asap. Bethany is disabled and should not/does not drive,and for Ariana that is yet a year away.
Meanwhile, I'll be driving Wes to radiation and work daily for the next six weeks, or so. I should probably just focus on the NOW and stop thinking about the future.
We will be setting up a fundraising website this weekend, so that people can help us. Chemo, radiation, and brain surgery, is very expensive.
We put up the Christmas tree yesterday. Trying to be as normal as possible.
Oh, my heart aches.
Comments
xoxoxoxo, my sister in Christ.
http://voices.yahoo.com/work-home-opportunities-people-fibromyalgia-1819840.html
Sometimes a list is what we can do. Sometimes it takes every bit of strength in our marrow to just breathe. Never do more than you can. Always breathe.
I love you.
Barbara, from the OrthodoxClassicalHS group.
Please, have your husband draw up an Advance Directive. It is MUCH better if the two of you decide these things now than later when stress can affect your thought processes and decision making skills. You need to decide things like whether or not you want him intubated (including extenuating circumstances that might change that decision like a car accident or other thing that requires temporary intubation vs. long-term ventilator dependency); whether or not he wants to have CPR done; the use of tube feedings once he can't take in oral nutrition; and other medical situations you will most certainly face. I know it's hard to think about these things now but it will be much harder as his disease progresses.
Also, once his condition reaches the point where he meets the guidelines in your state for Hospice care, it would benefit you to take advantage of this service. The nurses and caretakers are specially trained for end of life care and are fantastic at helping both the individual who is passing on and the family members who care for them. They have resources that will be very helpful for you and the children. Hospice care is often covered by insurance and if not it will be covered by Medicaid or Medicare.
Please feel free to contact me if you need someone to talk to. I worked on an oncology floor for several years as a nurse and I have experience with the issue.
Your family is in my prayers. May God comfort you and bring you all peace and rest. Remember He is all seeing, all knowing, and that He loves you all more than you can possibly understand.