Second Half of Saturday’s Post

I was trying to write a post on Saturday, but kept running into technical hurdles—specifically with the last part. I was doing it on my phone, from the car, traveling in and out of network coverage. After spending the entire day rewriting it 3 times, I posted what I had, ate some ice cream and called it a day. Thus, the unfinished ending to my post on 11/23.
(Already know how to be successful next time. Although, I’d imagine NOT being on narcotics is a good start.)

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Since last week I’ve been continuing to process what happened during my vascular catheter procedure. Lots of you have said things about how strong I am and I do appreciate the encouragement. But I want to be honest with you—I, myself, really have no ability toundergo that kind of experience. I never would have been able to endure that nightmare. What sustained me during the procedure was the strength of our God.

None of us would have expected that to happen. But God, in his infinite wisdom, knew I would need an army of prayer warriors for what was coming that day.

Of course, God doesn’t need our help—he’s omnipotent and could have accomplished every bit of provision without anyone praying.

But a part of the vision he gave Keith and me for this season was: doing life in authentic community, junk included. So in pursuit of that vision, everyone praying was instrumental—and God made a way for that to happen through Kelsey, and all of you praying. So again, thank you for your prayer, support and for walking through this with us.

NOW, why we were in PA on Saturday [and now, home!]…

Because 1) the stem cell harvest was done after just the one day, and 2) the way the schedule lined up, we didn’t have to do anything at the hospital again until December 4. So we decided to rent a car and drive home for Thanksgiving week!

I’m still dealing with lasting side effects of the initial round of chemo from a couple weeks ago, and also the neupogen making its way out of my system. So I’m laying low, but definitely glad to be home! As soon as we go back next week, everything gets intense. Or, it’s all downhill from there. I go in-patient starting December 5  (basically for the rest of the time) starting with 4 or 5 consecutive days of chemo. So for now, we’re enjoying being home :)

Thanks for reading!
Lovemily ;)

Total Stem Cells & Why We’re in PA Right Now

2 million stem cells were needed from Thursday’s harvest. The # of my stem cells collected was 31.16 million! Crazy…
The fruit of 6 days of waking up at 6am to do 2 injections of the growth factor Neupogen—to help my stem cells grow and move from my bone marrow out to peripheral blood.

The side effect of Neupogen they warned us about was “bone pain.” That was vague and kind of creepy sounding.. Not descriptive enough to be helpful in knowing what to expect. Well, we found out what it’s like and there’s really no good way to describe it! Some people don’t get it as bad as others and apparently there’s a correlation between the amount/degree of bone pain to the # of stem cells collected. That makes sense because by the time Tuesday rolled around my pain was through the roof. In a 31 million vs. 2 million kinda way :) So that validation was nice for some reason.

Since Thursday I’ve just been continuing to process what happened and what that was like. Lots of you have said things about how strong I am and I really appreciate the encouragement because it’s made me realize it doesn’t make any sense. God has given me clarity about it. See because I never would have been able to endure that myself.

I’ve thought about that some and God gave me some clarity on that—the

Vas-Cath #worsethanimaginable

For the last month all the nurses have assured me this would be “nothing!” Explained how “patients are always surprised when it’s over in 10 minutes,” and how easy it is. I heard this from enough nurses (and different departments) that I believed it.
Either they’re all in on it together trying to sell patients on this ridiculous fiction, or something unlikely went really wrong with my vas-cath. I’m sure it’s the latter.

I had become pretty comfortable with having the procedure this morning, and even the part that upset me most—having a large catheter placed in my neck/carotid artery, secured by sutures, but only getting a local anesthetic (injections in my neck to numb the area). So, fully awake, fully aware, full audio, you get the idea.

The nurses were getting the table set up with a radiation protective backing and extra pieces so I’d have somewhere for my arms. I had to wear a hair net and mask, and keep my head turned far to the left since they’d be working on the right. They cleaned and prepped my neck, and layered several blue, paper-like covers on/around the surgical site.

The doctor came in to do the procedure, and got started right away. A good thing, because in the end this didn’t take a mere quick-and-easy 10 minutes, but I was on the table for about 45 minutes.

Basically something went wrong with the anesthetic—either he didn’t give me enough, didn’t put it enough places, or some other cause (I don’t know how it works) but I kept saying, “I can feel that and I don’t think I’m supposed to.” The nurse would look horrified & the doc would give me another shot to numb whatever area could still feel pain. That happened twice before he apologized again.. Then he explained he now had to push into it really hard 3 times and it would be a lot of pressure (i.e. crazy pain) and he was sorry.
It hurt like hell so I was making involuntary sounds, which quickly turned into sobbing from underneath the blue surgical papers. They all kept saying, “I’m sorry, I’m sorry,” to me down there. I didn’t know WHAT was happening, but it wasn’t good.

And it wasn’t over yet because he still had to do the sutures. Therefore needed to inject me one last time with anesthetic so I wouldn’t feel the sutures. But I did feel some of the sutures. It was hard to tell what I felt, but it seemed like some different prickly/sharp things sticking me. Definitely not as painful as the other stuff though.

It was a horrible experience this morning, but I’m alive.

Yes, I do feel like I was hit by a bus having been hooked up to this apheresis machine for 5 hours, pumping 11 liters of blood out of and back into my body, and all through this awful thing hanging out of my neck. We’re just waiting at the blood center for my nurse to take out the vas-cath and let us leave. Keith is starving and I’m desperate to lay down.
Today’s harvest needs to have collected 2 million stem cells. When they did my blood work this morning they projected collecting 29 million. So it would seem like 2 would be no problem, especially factoring in what we’ve read and heard from others. So we can all have big hopes and expectations for my stem cells :)

Thank you all so, so much for your thoughts and prayer around this day. It is bringing us such comfort knowing each of you are praying. In moments of weakness throughout the day I’ve been grabbing my phone for encouragement to see who’s praying at the moment, and it has been SO COOL! Perfect encouragement :)

I love all of you. Thank you so much.



The crazy machine that separated my stem cells from everything else.

All In

After 2009/the first year of MS and having high-dose IV steroids about every 6 weeks, I’ve since objected to steroids unless the circumstances are unlivable.

[Because the steroids themselves are their own kind of misery.]
We saw Dr. Burt today before everything starts next week and he said I should do a few days of steroids before the mobilization chemo on Monday. I said ok.
That’s when everything starts heading “downhill,” so why not precede it with a few rounds of steroids if that will help? If the doctor says so, do so. And #thatswhathesaid.

Gotta be #allin at this point! (at Galter Pavilion – Northwestern Memorial Hospital)

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