Beam me up.

A friend of ours posted this on Facebook yesterday saying that this song came up on her playlist and she immediately thought of us. I just took the time to listen to it and it touched me so much I had to share it. The song is called Beam me Up by Pink.

Thank you Aimee. I loved it so much I had to blog it.

My favorite line is "Let me be lighter, I'm tired of being a fighter" because honestly, I was fighting right there with Dan for all these months and had to be strong for him and my kids and to keep us going. Now I feel lighter. Lighter that he is at peace with no pain and suffering. Dan always told me he was sorry I had to take care of him and I always reassured him that there was no apology needed and it was my job as his wife and caregiver. In sickness and in health were in our vows and I stayed true and I know he would have done the same for me.

Take a listen when you have time, and sing along with the lyrics like I did!



There's a whole 'nother conversation going on
In a parallel universe.
Where nothing breaks and nothing hurts.

There's a waltz playing frozen in time
Blades of grass on tiny bare feet
I look at you and you're looking at me.

Could you beam me up,
Give me a minute, I don't know what I'd say in it
I'd probably just stare, happy just to be there, holding your face
Beam me up,
Let me be lighter, I'm tired of being a fighter,
I think, a minute's enough,
Just beam me up.

Some black birds soaring in the sky,
Barely a breath I caught one last sight
Tell me that was you, saying goodbye,
There are times I feel the shiver and cold,
It only happens when I'm on my own,
That's how you tell me, I'm not alone

Could you beam me up,
Give me a minute, I don't know what I'd say in it
I'd probably just stare, happy just to be there, holding your face
Beam me up,
Let me be lighter, I'm tired of being a fighter,
I think, a minute's enough,
Just beam me up.

In my head, I see your baby blues
I hear your voice and I, I break in two and now there's
One of me, with you

So when I need you can I send you a sign
I'll burn a candle and turn off the lights
I'll pick a star and watch you shine

Just beam me up,
Give me a minute, I don't know what I'd say in it
I'd probably just stare, happy just to be there, holding your face
Beam me up,
Let me be lighter, I'm tired of being a fighter,
I think, a minute's enough,
Beam me up
Beam me up
Beam me up
Could you beam me up.

Wonderful poem.

I read this poem in the back of a booklet called My Friend, I Care that was given to me from my friend Tracey. I have read it over and over and over. This just really resonated with me and I wanted to share:

Don't tell me that you understand
Don't tell me that you know.
Don't tell me that I will survive,
How I will surely grow.

Don't tell me this is just a test,
That I am truly blessed,
That I am chosen for this task,
Apart from all the rest.

Don't come at me with answers
That can only come from me,
Don't tell me how my grief will pass
That I will soon be free.

Don't stand in pious judgement
Of the bounds I must untie,
Don't tell me how to suffer
And don't tell me how to cry.

My life is filled with selfishness,
My pain is all I see,
But I need you, I need your love,
Unconditionally.

Accept me in my ups and downs,
I need someone to share,
Just hold my hand and let me cry,
And say, "My friend, I care."

- Joanette Hendel (Bereavement Magazine)

Two months later.

And I am back. I have many posts written in draft form but never able to post them. The main reason is that they were painful to write and I was so afraid that Dan would read them. I am sure many are asking why would I be afraid of Dan reading my blog? Well because he doesn't realize he is dying. And the things we have had to witness him go through in the past two months have just been awful and nothing I would ever want him to read about when his brain can't process reality anymore.

The absolute hardest part of this whole experience is that he doesn't know he is dying. While that truly is a blessing for him, it's excruciatingly painful for me. I can't say goodbye, I can't tie up loose ends with his help, I can't talk about anything that refers to dying. 

My sweet sweet husband is lying in his hospital bed in my bedroom sleeping now up to 18 hours a day, not eating (other than a few spoonfuls of ice cream every now and again), and now barely communicating with me.

I love him with all my heart and I tell him 100 times a day how much I love him.

Please do the same thing with your loved ones. Life is way too short.

Still Fighting.

Sorry I never updated since Dan’s last appointment.  Life has been super busy with Dan and the kids the past month. Carson graduated from pre-K and had a bunch of festivities, both kids have had birthday parties to attend, Carson also had t-ball which finally ended last week (thank goodness for a break), and Dan was admitted again that day of his last appointment due to his symptoms and complaints. The CT scan showed the brain tumor was stable but with his back pain being unbearable, they wanted to get an MRI of the spine and the brain and the only way to do that urgently was to admit him. 

So he spent another 5 days at Hopkins trying to figure out the cause of his pain while I juggled work, the kids, and life in general!  His MRI scan again showed the brain tumor area was stable which means there is no tumor growth at this time although still some swelling hence why he still has to take the steroids. The spine MRI showed 3 compression fractures in his back and we have no idea how that could have happened. And since it was a holiday weekend we had to wait for someone to come and fit him for a brace. He has to wear this lovely TLSO brace that looks like a body cast. He is not happy and hates this thing. 

The best part (if you can even say there is anything good about being at the hospital) was the visit he got from our dear friend Jody. I have not seen Dan smile like he did that day in months when he saw her walking into the room. Jody and Lee moved to Seattle for her job a few years ago and we only get to see them a few times a year so while she was here on business, she came by for some hugs. I wish I would have gotten a picture of his face. I know she saw it too and it’s one of those sweet moments that will stay with me.

Once the TLSO arrived and he had a day to wear it and get comfortable, he was discharged. That was on May 29 and on Saturday June 2^nd he started home care (for the third time!). Our house has been like a revolving door between nursing, speech, OT, PT, and an aide coming in and out all week long but the care has been outstanding. We are using Bayada and I can’t say enough about the service and compassion they have provided to our family. I have seen such great improvements in his strength the last 2 weeks with PT coming 3x per week and I am sad that insurance can’t cover it much longer. The OT is very concerned about his wrist though since it’s in constant pain. And another new symptom this week is a pain in his lower belly/groin area. I am diagnosing it as a hernia. 

So all in all things at home have been stable. He is supposed to have a follow up appointment either later this week or next so I should know more about his hernia and wrist soon. I told him last night that I dread going to doc appointments now. Getting him out of the house and into the car is not so easy anymore and whenever he has a new issue he ends up getting admitted. I am praying this time that it’s something that can be dealt with in the office.

I also wanted to add that Dan is so blessed with such great friends. They visit often to sit with him, talk about things other than cancer, play with the boys, and even play poker! Dan’s childhood friend Damon was also so kind enough to install a ramp on our house for easier access. Prior to the ramp I had to put in calls for help when it was time to get him in the car for appointments. Thank you Damon (and Brian and Chris) too!

I will end this post with one I recently put on Facebook. Dan getting cuddles from baby T. He loves it and it makes him cry and than it makes Tyler constantly ask "why you crying daddy?"