Saturday, November 30, 2013

Heartache

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.   

18 comments:

Carmen said...

Alana, my heart aches for you as well. I want, badly, to do something, anything for you. All I can do is pray, and I feel like it's not enough.

xoxoxoxo, my sister in Christ.

C. Dominica said...

Do not be ashamed of your tears. We pray and cry with you. While you may not have entered the paid workforce, you have managerial skills (it takes a lot to manage a household), nursing skills (from nursing a special needs child and now a husband), teaching skills (homeschooling), communication skills (blogging), etc. Your husband is strong, because that's what your family needs right now. You will get stronger too and he will lean on you. Don't be afraid to lean on your friends. Prayers, prayers, and prayers for you.

C. Dominica said...

Do not worry about this now, but as your mind turns to "work" maybe you can look over these jobs, and keep them in the back of your mind if you need them.
http://voices.yahoo.com/work-home-opportunities-people-fibromyalgia-1819840.html

Alicia Lewis said...

You all grieve differently like Josh and I. I'm more like you and Josh is more like Wes. It's tough, but like you say, it's good to have him stubbornly trying to fix everything like our men do, they are techies afterall. We will sit and ask what are you going to do together. We will go through the rollercoaster of emotions together when we are together. You can cry then laugh with me :). That's what friends are for.

margaret said...

Oh, Alana, it happened to me. I got the cancer that killed my mother and my grandmother but in my case there was no-one to leave, no-one's heart to be broken for which I was, and am, grateful. I can't begin to imagine what it feels like facing losing your other half and the father of your children so I won't pretend I can but, please, pray to St Luke the Surgeon. Medical referrals work from heaven. Cancer is just vicious. I hate it. It took both my parents. You have all my prayers. I've started saying the akathist to St Luke daily just for Wesley (his namesakes endear him to him so much) and I will keep at it. I know saying things like “hang it there” is rubbish when the world is disintegrating but it is all you can do.

ephremgall said...

Prayers

Jennifer Hock said...

Lord have mercy. Left wordless. Hugs!

Jules said...

prayers and thinking of you and your family.

Carola Lambrou said...

Oh Alana...I feel your pain.In the midst of all you are so strong, I would crumble if this happened to me. God is with you and your faith is so strong. Praying for you all every day!

Ruth said...

I think focusing on the present is probably best, but I would be just like you, looking ahead. Praying for peace for you, and an ability to be fully present in each day.

Juliana said...

I can't imagine how difficult this situation is. Pray to St John of San Francisco! Take your husband to venerate his relics. Anoint him daily with St John's oil. Have him prayed for at St John's sepulchre every Saturday. Pray the akathist to Hierarch John. He has aided thousands and restored the health of many seriously ill people. He will hear you.

Tamara said...

"I don't know what I should do; I only know what I can do." (Or something to that effect, from the latest Star Trek movie.)

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.

E Helena E said...

Praying for you all during these hard, hard times.

gemma said...

I've been by several times, mostly hoping I didn't read what I read. I want to have words to help you and don't. I can only pray you find strength and solace and also pray for the medical world to come up with some new thing to change the outcome. I will pray for all of these things and I will pray often, without ceasing as Paul says.

galiwig said...

We have never met. I found out about your situation and your blog through a family member, Cara Iwig Terpening. I will be praying fervently for peace for all and for healing. My heart aches for you.

Barbara Shukin said...

Dear Alana, many prayers are going up for you, your husband, and your children. God is with you.

Barbara, from the OrthodoxClassicalHS group.

DebD said...

I haven't been around for a very long time and I've just found out about your husband dx. I'm so sorry. We have a Blessed Mat. Olga prayer group at church. Tomorrow is our time to meet and I'll put Wes/Theophan on the list.

Trisha said...

Hello Alana: The Social Security death benefit is only about $255. It sure doesn't go very far since a basic cremation costs between $900 and $1250; never mind a full fledged funeral and burial. However, unless your husband is on Social Security disability, you won't get that amount either. It's only for people getting Social Security benefits.

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.