Wednesday, June 19, 2013

A room with a view

Or: What a weird place to design painted furniture.

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I was cleaning off my old laptop and ran across some pictures that I'd kinda forgotten about. They were from 4 years ago this month when I had my bone marrow transplant. It started me wondering if I should do a post
about that experience.

Should I or shouldn't I? Should I or shouldn't I?

Monday I was chatting with a fellow patient as we waited for our infusions and she was clearly bald under her neon green and all blinged-out hat. She told me the hat made her approachable and everyday people came up to her asking questions. They were frightened and with her bubbly personality she was able to ease their minds.

Well, I don't have a neon green hat but I have a blog with some neon green in it! I started this blog to share what being positive and engaged in life has done for me in my battle against cancer, in hopes of inspiring others. Maybe it's time to get down to it and speak frankly about
getting a bone marrow transplant.

First, it was anti-climatic and that in itself might help someone, somewhere feel a little less fear. Really, it was not even close to what I had pictured in my mind...
So here goes; the story of how I went from this:

to this:
in just two short weeks.

Imagine going to the doctor because you think you've severely pulled a muscle. Instead of saying 'Here's a prescription, you'll be just fine,' the doctor says you have incurable bone marrow cancer.

As you climb back up off the floor you say "I'm sorry, for a second I thought you said INCURABLE bone marrow cancer."

My life took a sharp left turn when I'd planned on going straight ahead. I was sent to an oncologist who immediately sent me down the hall for a bone marrow biopsy. I knew how horrible those were! Mr. Bad was out of town so I was facing it alone. I was shaking so badly my legs were bouncing around in my boots.

I was literally shaking in my boots!

Many icky things (24 hour urine test) and very few painful things (again with the bone marrow biopsy) followed until I was stable enough to travel to Portland for a transplant.

Step one was gathering my stem cells since I was going to be my own donor. Step One of Step One was giving me a series of shots in the belly that gave me lower back pain bad enough to make me whimper. The purpose was to collect my stem cells into one area for easy harvest.

The actual stem cell collecting process was easy. The only scary part was before hand, when they told me to drink lots of water - that they needed me really hydrated. Then as I was being taken to my room, they said the process would take 4 hours during which I wouldn't be able to use the bathroom. Seriously? NOW I was scared.

Here I am, all hooked up and settled in for 4 hours.
There were no 'accidents' or bed pans. The process was like a transfusion but they "spun" my stem cells out and put back the remaining blood. It was a big loop - out one arm, through the machine, in the other arm. They showed me the bag of stem cells because they were so excited about how bright and healthy they were.

I'm squeamish.
It looked like a bag of orange fish eggs when I took a fast peek.
Exhibit "A"

About a week later we were back in Portland for the transplant.

 I got a room with a view! (Actually, at OHSU all the rooms have a view)

Settled in doing, guess what? Designing furniture go-bys! I actually used them to paint furniture when I got home. I am a dedicated furniture painter, hear me roar!

Mr. Bad Rabbit was able to stay with me the whole time. He uhhh, customized the TV so he could play xbox and not get bored.

They provide a comfy bed for advocates. snort

I received heavy duty chemo for about 3 days and had my barf-bucket close at hand. The nurses cut my hair down to about an inch when it started falling out. Mostly I slept. And slept. I'm told that I sounded pretty loopy
over the phone.

A spoon full of sugar ......

Then it was time for my transplant. The heavy chemo had done it's job and we were hopefully starting with a clean slate.

Yep, it was exciting. I slept, a doctor stood looking at a monitor and a nurse looked at me.

 Here's an action shot. I think the nurse bent over to check a tube.
See my green bucket? Never out of arms reach.


Then one morning I woke up looking like this:
ACK! Crimminy, what am I going to do about that? Call my friend Lisa, that's what! And while Mr. Bad was out running errands Lisa got busy on my hair.



 Doing what?




She dyed it green. And I look like a crazy woman.

Mr. Bad Rabbit came back and thought it was cute!

After that I stayed in the hospital until most of the rejection danger was over. It was days of sleeping, being herded around the unit, pushing our IV stands, for exercise and working on my laptop. There was that one exciting time when I caught my robe in the treadmill and accidentally hit the high speed button in my attempt to untangle. Yup, that was a good one. I didn't even rip IV's out in my mad escape. It was a miracle. :-)

We then moved into an extended stay hotel and took walks. I had to wear the platypus mask always. With my scarf, mask and sunglasses I only startled two people. Go Portland! Honor diversity!

After a week of daily aftercare we got to go home. YAY! It had been three weeks, which I was told, was an exceptionally short time.

Right?

A few weeks later I returned to work with an inconvenient pict line hanging out of my arm and a brand new hair style.
Check out the name plaque the guys made for me.

Disclaimer.
My transplant worked for about four months and I was back on chemo. We
knew it might not work, but one has to try.

In short, it wasn't a horrible experience at all. My advise if this is in your future, believe them when they tell you not to bring PJ's you love or your favorite blanket. You won't be able to look at them afterwards without thinking about the hospital. Same with broccoli. In fact, don't order broccoli while in the hospital for chemo. You'll be grabbing that bucket so fast ......

I hope I took some fear of the unknown away of someone. Please share this with anyone you know who is facing something that scares them. Things aren't as bad as we build them up in our mind.

And tell them NOT to look up anything on the internet. I would be dead 27 times already if I'd done that.

Instead? Yup, you got it.

Whee!
REMEMBER: You can purchase
the little hopping bunny here at Forest
Blue Factory.


Linking to:
my uncommon slice of suburbia
finding fabulous
my repurposed life
shabby nest
too-much-time
its overflowing
the dedicated house
be different act normal
someday crafts

11 comments:

  1. Oh I love this post Daena! My what memories it brings back. I I love the photo of Michael kissing you, and the platypus bill ...of and the green buzzed hair!! ha. I forgot about the Annie Lennox sign.

    It's so interesting hearing your take on it then and now 5 years later. I am sure it will help lots of people out there! (I'm so grateful to be your friend, too bad I live in a such a strange and far away land now).

    Keep up the great furniture work and positive attitude…as I know you most certainly will.
    -Hilary

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  2. Daena- I am a newcomer to your blog. I admire your courage to share your experience with your readers. I hope you never have to go through anything like that again. But, if you do, I pray that God will grant you strength and courage and that he will let us all know that you need prayer. Please don't hesitate to let us know- if you are celebrating wellness or are fighting another battle. Hugs-

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    1. Welcome,Susan! I have been refusing to have a second transplant since the first didn't work. One has to give it a try but I am happy with my chemo. Did I just say that? LOL!

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  3. Thank you Daena for this post.

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  4. My grandson had leukemia when he was three to six. He had chemo the whole time. It's amazing what the body will withstand. My prayers to you in your continued journey. Praise God!

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    1. You're right about what the body will withstand, but what amazes me is the strength we don't know we have. Every day in chemo people are laughing and comparing stories. It just now occurred to me that there is much more laughter in the infusion room than in the corporate office I used to work in. Food for thought.

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  5. Thanks for sharing -- you're an inspiration! My best wishes as you move forward.

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    Replies
    1. Thank you Deborah! I just don't want anyone to be scared when it's not usually as bad as they think.

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  6. Daena, sweetie, this post contains everything that I love about you! Thank you, THANK YOU for sharing ... I can only imagine how many people you are soothing and inspiring with it. I admire you more than you know.
    Connie

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    Replies
    1. Thank you so much! I really do hope some fear is taken away from future transplant patients. I was terrified until I was in the waiting room waiting for orientation and the man next to me said the transplant was totally anticlimactic. It was exactly what I needed to hear.

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  7. I'm sorry to post a comment so long after the post, but just found your blog recently and am reading front to back. Had to say I appreciate your honesty and courage in sharing this with others. You take the fear out of the future unknown. So many in my family have had some form of cancer, so it is a familiar concern for me. Thank you again, and God stay with you as obviously he has walked with you so far.

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