She’s gone

Dawn’s courageous battle with melanoma ended peacefully and pain-free yesterday in the company of me, our two boys, and each of our mothers.  She told me the night before that she had no pain, and this terrible disease took her from us not long after.  I am thankful there was time for us to say all we wanted to say to each other and I think that’s helping me deal with her being gone.  We have no regrets about anything, other than maybe using tanning beds so many years ago.

In the past 24 hours there has been an outpouring of love for Dawn that has oftentimes left me speechless and crying.  She loved every single person she spent her days conversing with, and lived her life to the fullest as best she could.  Her body never slowed her mind, and even when she was confined to a bed she continued to stay upbeat and positive.  The day our oncologist gave us the grim news about a lack of any further available treatment, we hugged and cried, and then she started planning for my future without her.

I can’t believe she’s gone now.  It almost feels like one of the many nights she was in the hospital while I was home with the boys, and I fear the day that my mind stops tricking me in that way.  I loved her attitude and her outlook through all of this.  I loved everything about her.  Even in the few times she broke, she broke full-on, and gathered herself to hold her head high again.  There was no point in being sad all the time, because sadness didn’t cure anything.  Sometimes I wondered how she didn’t put a fist through the wall, but that just wasn’t her style.

Dawn lived to soothe everyone around her.  If you needed to be picked up, she’d find a way to pick you up.  If you needed someone to sit in the dumps with you, she’d climb down by your side until you were ready to come back up.  Her joy came in the joy of others, and if she had to manufacture that joy, well, that was just fine by her.

I’m really going to miss her, because we were supposed to have another 30 years or so together.  I hope the boys and I can find a groove and live without her.  I can’t believe she’s gone.

Services are this weekend as follows:

David C. Brown Funeral Home
500 E. Huron River Drive
Belleville, MI 48111

Viewing from 2pm-3pm (family only) and 3-8pm (everyone) on Saturday, April 6th
Viewing from 11-12 followed by Memorial Service from 12-1pm on Sunday, April 7th

Luncheon to follow on Sunday, with details yet to come.

In lieu of flowers, please donate to the Melanoma Research Foundation or the boys’ college funds.

Please dress comfortably.  Dawn never liked dressing up, and doesn’t want you to feel the need to, either.  It’s your decision.

On Sunday, at sunset, please join us in releasing purple and blue balloons in Dawn’s memory.  Feel free to do this wherever you are, or you can join us at a location to be determined.

Contact me with questions at phenom1984@gmail.com

Being at home

I’ve been home for over a week now. I have to say, being home most definitely beats being in the hospital!!

Mike is an extraordinary caregiver; so much so that I often feel guilty. It seems every time he sits down or starts a project, I need something else. In the same respect, I’m pretty frustrated that it’s coming to the the point where I can’t really do much at all on my own. Everything I took for granted now smacks me in the face with “NU-UH!” Worst thing possible for a (former) control freak!!

Something to drink? Need a pen? Want a snack? A piece of paper that you know right where it is but can’t explain? Yeah. Too bad for me.

Physically, I’m in a fair amount of pain constantly, mostly through my whole abdominal area. My incision is fully healed from the exploratory surgery, but since the tumor is still there and growing, the pain continues.

My home hospice care nurse is great and answers all of our questions as well as modifies drug dosages to keep me comfortable yet awake. They’re available 24/7, so that’s a nice feeling.

We have wonderful help from our parents and friends, and office staff is an extraordinary group of people whose loyalty and talent make my heart big and proud.

I get so tired so quickly these days! It’s crazy. I have an oxygen tank that I laughed off the first couple of days; now I’m thankful for it. (Although the fine line between keeping it the right spot and not letting it choke me is a bit of a challenge!)

I can’t talk for very long, but I’ve loved seeing my visitors! My cousins are coming this weekend and I cannot wait to see them!!! Although, I do hate falling asleep on people!

I don’t eat much-just nibble. So much almost sounds good but then reality hits and a bite is all I get. :( I dream of food and places but then I wake up and again, nothing is appetizing. The same with drinks. I wish there were one thing that was consistently yummy, but it varies and is so frustrating!!

This certainly isn’t anything I ever thought would happen to me. A hospital bed in my family room? Crutches to get to the bathroom? Oxygen tank? Planning visitations and playlists? Freaking surreal.

Check your skin people. Check your skin.

Home

I’m home. Not sure where we go from here, but I’m not in the hospital and that’s a damn good thing. :)

Not much to say

I haven’t updated because there hasn’t been much to say. The doctors are trying to get my pain under control with pills instead of IVs, plus they’re still monitoring me. Oh, and the whole abdominal surgery thing :)

They’re trying to get me home as soon as possible, since there’s not a whole lot they can do for me here, as we can manage pain at home (and actually, maybe sleep there!)

So, fingers crossed that I get to go home to my babies today…we’ll all feel better with me there.

Exploratory surgery

So yesterday (Monday), My entire team met and talked about (and then with) me & Mike. It was decided that the next best course of action would be to do an exploratory laparotomy to see if the tumors that were (a) causing my slow bleed or (b) causing such pain and distress could be removed.

Such as the tests go, the scans (ct, pet, ultrasound, X-ray) didn’t show any clear indication of where or, if even, the tumors were attached to my small bowels. If lightly attached or merely hanging on, the chances of removal would be great – not perfect, but successful. If the tumor(s) were attached at the wall of blood vessels or intertwined by growth into bowels, then nothing would be able to be touched without chancing killing the bowels, causing sepsis and certain death.

Unfortunately once she got me open and explored a little, it was determined she couldn’t get any of it out without greater risk to my life, so she closed me back up.

Not a great day.

We’ll meet with Dr. Lao today and see if he has any other ideas on treatment or how to shrink these tumors away. Chemo may be out because of the bleed potential, so we shall see what he has up his other sleeve.

Not much of an update

Still here at UofM, waiting, watching, testing. Just got 2 more units of blood. My numbers were low, then normal, then stable, then this morning they started to drop a little. Nothing dramatic like the 4 I was when we came to the ER thankfully!

I know everyone really wants to know what is happening, what the next steps are, where we go from here.

Yeah, Mike and I would like that, too.

Basically, right now, we’re not treating my cancer at all. The tumor (or whatever is bleeding) probably IS melanoma but thus far it isn’t relevant.
They have to stop/find the bleed and get it handled before anything else can happen.

Of course that means I have multiple teams of doctors including my oncologists. They are all basically on the same page, so that’s reassuring.

We still aren’t sure when I get to go home. I seem to spike a low grade fever every night, even though I’m on antibiotics.

So unfortunately there is no flow chart for this one; no if-then steps or details.

1)We get the bleedy thing to stop.
2) We go from there.

It’s frustrating to not have a plan, but obviously the most important thing is focusing on this one thing right now. So keeping praying or doing what you do: specifically: stop bleeding and start making my own quality blood again. When we know more, you’ll know more.

Here are some ?s I’ve gotten:
1. Why aren’t you on the cancer floor?
because of 2 things: they aren’t treating my cancer and when you come in from the ER you get a bed where you get a bed.

2. When are you going home?
Whenever my doctors deem it safe for me to be out from under their watchful eyes

3. Are you in pain?
yes. Yes I am. Take that feeling you get – a running cramp – and multiply x 100 and that’s the pain in my right side/flank. Now add a super tender belly and you probably have an idea.

4. Are you tired?
Exhausted and filled with meds, resulting in a lovely bleegh feeling constantly.

5. Do you need anything?
actually, no, but I appreciate all of the offers. Stay tuned…there will be a time when we do though!!

This whole thing is very scary and very real and we can’t thank everyone enough for standing by us. We have hope and love and know we’ll get through this one way or another.