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Hi everyone!

I've spent the last few months battling UTIs and incompetent people

in doctor offices, pharmacies, & insurance companies. But this past

Monday I finally had my dose of novantrone - yay! It was only about

6 weeks after it should have been. I had a wonderful steroid high

for 2 days (they give a small dose of dexamethasone with the chemo)

which has unfortunately worn off now. But I was standing and walking

better than I had done in months while it was there!

I was really tired from everything - the UTIs and the chemo - but am

doing better now.

The chemo treatment was an interesting experience. Instead of home

health, I ended up having to go in to my neuro's hospital 90 miles

away. I won't go into the details of all the problems, but the whole

ordeal took 10 hours, which was absolutely ridiculous since it should

have been closer to 5-6 hours (including travel time). The nurse was

horrid and among other things, at the very end of the treatment I had

some blue drips running down my arm - not a good thing to have chemo

leaking out of the IV and touching your skin! But it's all over for

3 more months anyways.

I did see my new PCP this week too (my old one moved away), and I was

very happy with her. She is very easy to talk to, and she is more

than happy to coordinate care with my various specialists.

Now next week I get to see my new urologist, due to the subpar care I

got from the previous doc's office with my various bladder

infections. So hopefully that will go smoothly too!

I am at almost 11 months post-revision. My back is doing well for

the most part. The pre-surgical pain is gone. But my biggest

problem with pain now still is sleeping comfortably. I don't think

it's my mattress (fairly firm), but more with the positioning. It

doesn't matter where I cram or don't cram pillows, I just always wake

up really sore. And oftentimes at the end of the day I feel really

tight from sitting all day in my wheelchair. I've been trying to

change positions more often, and it only slightly helps. But other

than that stuff, things are going well here. My husband is putting

up a swingset for the kids (now ages 3 and 4), and they are so

excited :) It's fun to watch them!

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