Sunday, September 28, 2014

A Year In

In a couple of days, we will officially be one year in to our cancer journey.  September 30th, 2013 was when Wes had his seizure that we thought was a stroke.  We went to the ER and they found a lesion on his brain.  For three days he was in the hospital with a team of doctors trying to figure out why a young healthy man such as Wes would have a stroke.  Only one doctor said "that's a brain tumor"...which of course was confirmed a month later on a follow up MRI...and then in November we got the official diagnosis after the biopsy...but I count September 30 as the beginning of our Cancer Journey.

And Wes is a walking miracle.  He has the most aggressive type of brain cancer there is (Glioblastoma) for which there is no remission and no cure...and so far he is still able to drive, program, work, talk, ...all that normal stuff.  He is himself...with side effects from the chemo.  This is the cancer that has a 14 month median survival rate WITH TREATMENT.

So...all that to say:  Wes is a walking miracle man, and he's doing so well, thank God.  The future is in God's hands, however long He decides to give him.

Me, on the other hand:  I am a wreck.  What if Wes lives for another ten years?  That would be a wondrous and fantastic miracle indeed, but I cannot live with this level of stress for another ten years.  I have been in crisis mode for a year and it is WRECKING ME.  And I don't know how to settle in for a longer journey.  I have gained 30 pounds, I am weak, I am wobbly, I have very little energy, I cry all the time, I am scared and I am grieving.  And from my perspective, this journey SUCKS.   I'm glad Wes is doing OK (he has much less energy than he used to, is tired a lot and struggles in that way, so it means many times nobody in the family has any "get up and go" oomph...dont' get me wrong...things ARE different, even though he is still alive, talking and working.)  But I am a wreck.

I need to figure out how to settle in for the long haul, and not just for a short "oh no he's gonna die in a year" crisis cancer journey.  And quite frankly, I don't know where to start with taking care of myself.   Everything costs money that we don't have in our budget, thanks to that lady that totaled my van last year and the new to our budget car payment that resulted. One big result is that we are now a one car family, and that we gave up our YMCA membership where I was going to the pool.  

I feel like I need to find a balance and I am so off kilter I don't know where to start.

In a perfect world, I could get a professional massage a couple of times a month.
In a perfect world, I would be able to get back into the pool at the YMCA and swim or do movement in the water that would not hurt my hip.
In a perfect world I would be able to find someone to help me figure out how to balance exercise (and what type) to get stronger with fibromyalgia pain so that I don't keep spiraling downward and getting weaker and weaker. (last winter I ended up in the ER from post-exercise fibro pain when I tried to take up lifting weights again starting w/ 1 pound dumbells...so, it's a THING that I just can't push through.)
In a perfect world, I would be getting better pain management help than I do.
In a perfect world, I would tighten down on my eating and give up the sugar again but...SPOONS...dieting takes energy and I have been SOOOOO overwhelmed just the thought of dieting makes me want to cry.  I try for a week here and there...and then fail fail fail.
In a perfect world I would be doing the exercises to help my hip.

In real life, I am drowning.  glurblegrrrblegurble.

9 comments:

Michelle M. said...

Praying for you, friend! The type of stress you are undergoing is overwhelming. What you are feeling is normal. I hope you are able to find the energy to get healthy and exercise. Just take smalls steps and be prepared to fall down and pick yourself up again. Continuing to pray for you all. Hugs!

Matushka Anna said...

I am sending you a big hug. Praying for you and Wes daily. I wish I were there to help.

alphamom said...

Alana:I don't know if you remember me but I sent you a bunch of Orthodox books many years ago. I also lost my husband to glioblastoma but it took only six months.Frankly I doubt whether you have another year in front of you. I also have children with serious problems.What gets me through is the Zen saying "do the next thing".Forget anything but survival-you have the rest of your life to handle the long term problems.Just do what it takes to get thru the next hour..and then the next. Marion

Xenia Kathryn said...

I'm so sorry, Alana. I'm glad Wes is doing so well compared to his initial prognosis. But I can't imagine what that constant stress must be like, the big question of "when" and "what's next?". Our priest once referred to those battling cancer as the "new martyrs." I'd have to say their spouses and loved ones are, too. May your trials now bring joy inexpressible in the Age to come!

monica said...

wow wow and wow. is there someone who could give you rides to the Y? I am thanking God for every day and praying for strength and wisdom for the long haul. I wonder if there are any groups the hospital would know of that can be of help emotionally.

ChocolateChipMint said...

Prayers for you all! May God continue to provide the strength you need to get through each day.

Love in Christ,
Macrina

Wally West said...

I am totally addicted to coffee. I have at least 3-4 cups a day. I pretty much just drink my own coffee as well, ever since I discovered coffee capsules. They taste so fantastic and I don't have to wait in line at a coffee shop every morning.

http://www.mixpressocoffee.com/ecapsules/

Dianne said...

I am so sorry. What comes to my mind immediately may or may not be helpful, or even available to you, but just in case ... I so hope that I'm not being "that guy" who jumps in with unwanted advice . . .

I am almost one year into a stage IV cancer diagnosis. I had breast cancer 10 years ago, was treated and "solidly in remission," as my onco would say at my annual checkups. But late last year, we found that my cancer had returned in my liver and elsewhere.

I am being treated at a large university medical center. The oncology clinic here has a few psychologists on staff who work exclusively with cancer patients and their families. Insurance covers this except for a small copay. I have visited one of these psychologists a few times and plan to continue seeing her whenever I feel the need. I'm thinking that if you're still in Louisville (?), there ought to be some such resources available there. Understand, though I am a patient, this service is equally available to patients' family members.

It is so worth it. It's amazing what someone who specializes in psych within the field of oncology can do for you when your head is just spinning in that vortex you know all too well now. They have not only the mental health skills and experience specifically with all the emotional traumas of cancer, but lots of resources to direct you towards for some of your own health and practical needs.

We may have spiritual help from our priests, but that's simply not enough for addressing the specific and practical issues that come with cancer. And any good priest should agree.

Again, I'm sorry if this is unwanted or not-useful advice for your situation. I just get the feeling when I read your posts that you are carrying these burdens more or less alone. I hope you're getting more help than you reveal here, but if not, please ask around at the hospital/clinic where your husband is getting treated about where you can go for support for yourself.

elizabeth said...

so sorry so late commenting (busy but not excuse)...I actually had a dream about this post and I was crying with sadness because of the difficult situation you are in.

We are praying for you daily and family.

I do hope you can get some help in these things and it is very difficult.

(HuGS)