I'm home! (almost)...

Modeling the latest in stylish attire.....

I am home at Becca's for a few days. My discharge from the hospital was complicated by the hospital changing over to a new computer system over the weekend and a on-call Dr that had two hospitals to cover and an emergency surgery. She was supposed to show up at noon and didn't get to me until about 6:30 pm and seemed to be running on fumes. So I ended up coming home with only a partial list of medications that I was taking and no instructions for wound care. (Luckily we clarified all of that this morning by talking with the PA who helped with my surgery.)

A huge thank you to Catherine Mater who came for a short visit and ended up staying all day and bringing me home to Becca's house so my kids could cope with family and work issues which were complicated by the fact that no one expected me to come home before Monday or Tuesday.

I am sitting in the sunshine using a calligraphy desk that sits over my knees while I am sitting on the sofa. I will take a long nap this afternoon and hopefully get out for a walk around the block in the sunshine..

Thanks for all the healing energy you are sending my way. I think it makes a huge difference!

Molly

Some adjustments needed

So it was to be expected that Mom would likely have to come down slightly from her high of yesterday. And today was a day of adjustments:adjusting to new medications, new nurses, and new aches and pains. After having an unbelievably amazing nurse yesterday, we actually had to call in a supervisor and have a nurse changed today. In general this has been a rare issue at Providence and we appreciated the support we got from staff management. It sounds like they're going to be very articulate about who they assign to her for the remainder of the stay.

 She does continue to heal and make progress though. So all in all a good day.

What a difference a day makes!

Wow.

So we know that there will be lots of ups and downs along the way and a couple steps backward for large jumps forward and we don't want to jinx things -- but Mom's operative phrase for this afternoon has been "Pinch Me".

As in, "I can't believe things are going so well". In the last 24 hours she has:

• gotten a strategy that has her pain under control while dialing way back on the narcotics
• had a PT and OT session
• has gone for multiple walks around the floor
• has gotten rid of her catheter, has had a wonderful shower, gotten her hair washed, brushed her teeth and gotten to put pajama pants on (don't underestimate the power of those last four in feeling more human again)
• has found out that she doesn't need to wear her neck brace when she's in bed (allowing for more comfortable reclining and also for being able to see a tv/computer/ipad screen a little more
• has regained some of the strength in her left arm (the surgeon nicked/beat up on some of the major nerves to it, greatly weakening it and causing pain...hopefully only temporarily)
• has been able to start eating a little more than just liquids and so has gotten a little more strength/energy back
• has had a wonderful long nap thanks to the increased comfort of her bed now that she has her foam pad (thank you! thank you!)

It's kinda crazy. And I know there will be really rough days ahead, maybe even before she's discharged. But we'll take it for however long it lasts.

Sounds like at the moment, best guess is Monday for discharge...I think it mostly depends on a) when she regains all her swallowing ability and b) whether they want her to do a little more PT. Plus I think they just want a few more days to keep an eye on her and how the nerve pain and strength comes and goes.

Thanks all for all your good wishes and energy. Something's working, that's for sure.

b

you win some, you lose some...

So sadly, Mom doesn't look quite so cool, collected, and stylish wearing her version of this collar. Then again, this lady didn't just go through 7 hours of surgery hacking out bone and tissue and then putting in metal scaffolding in both front and back. So there. :-)

The good news is that Mom has moved from ICU to a regular room on the neurosurgery/orthopedic floor. She's sitting up for periods of time and doing a lot of maneuvering on her own and is eating soup/jello/pudding. So that's all good.

BUT....she's in great discomfort, not least because this brace won't let her get comfortable and presses against her sore neck and back whenever she tries to recline. And the beds here are significantly harder than the ICU beds (so thank you so much for all the offers to bring her foam pad up here. It's going to make a huge difference) She's also getting intermittent screaming nerve pain down her arm and having trouble swallowing due to a swelling in her throat.

Last night Jon and I had gone home after spending some time in the ICU getting mom settled. about an hour or so later we got a call from her nurse. She was having a bad reaction to the narcotics and was having bug hallucinations and an anxiety attack similar to when she was on IL-2. By the time I got back there they had gotten the medications figured out and she was back to her old analytic and logical self. I stuck around past midnight to keep an eye on her just to be sure.

We've been spending most of the afternoon thinking through strategies for pain management, for trying to position herself more comfortably, and for finding some way to keep occupied/distracted/entertained since she can't really hold anything/look up at screens, etc.

So continue to send your healing energy this way....I have a feeling tomorrow may be the worst and then things will start to get better. But meanwhile, Mom continues to amaze her doctors and nurses by her ability to spring back.

More tomorrow....

Onwards with Recovery

Becca here...

So, the surgery ended up being just about 8 hours (or probably the surgery itself was more like 7) and as the surgeon said when he met with Jon and me "She made me work for it". Jon noted that he also looked pretty proud of himself for all of the negotiating he did around arteries and nerves. And given his description, it did sound pretty impressive.

It also sounded like there wasn't a whole lot of tumor presence in there (though that's not totally clear...waiting to see all the path reports and talk to her oncologist about how he interprets things) which is at the same time both a bit disconcerting and really great news. Structually all went as he expected: Mom's now got pins and plates and cages and is fused from C5 to T1. (or from c5 to c7, but has some of the anchoring down to T1..that's also not clear).

She was doing okay in ICU when Jon and I saw her, though obviously she'd been through the wars. I think she should be moved into a normal room tomorrow and it sounded like she'd likely be in the hospital another 5 or so days...but we should know a lot more in the next 48 hours.

Thanks for all your thoughts, prayers, and energy. We firmly believe you all are part of her success story.

Becca

Surgery Postponed

Just talked with my neurosurgeon and my surgery is on hold. He called to say that he has been called in to operate on a young man who needs brain surgery tomorrow. He would have gone ahead with my surgery afterward but confided in me that this surgery was going to be "hard". I don't want him operating on my when he is tired so my surgery will be postponed until Wednesday or Friday. I was impressed that he called me personally and asked what I wanted. This will be for the best and I hope that the surgeon is able to help this young man. BUT it be hard emotionally and  psychologically to readjust to another couple of days of waiting.

Surgery Tomorrow

Fabulous long hand clapping and foot tapping concert by Pink Martini and the Corvallis Youth Symphony last night. Just the thing I needed to get me ready for 6 hours or so of neurosurgery. My surgery has been moved up to tomorrow, Monday, Feb 25th at 7:30 am. It is probably a good thing as I am having more pain and numbness in my left arm most likely caused by the growing tumor. I must admit I am quite anxious about what this surgery entails and am very glad to be getting it over with.

My neurosurgeon could not really give me a good idea of what to expect after the surgery as he really won't know all he has to do until he gets in there and sees where the tumor has grown. What I do know is that I will be in a rigid brace for three months and won't be fully healed for 9 months to a year. 

I am so glad that I was able to spend almost three weeks in Phoenix with dear friends playing golf and bridge, doing yoga, making fused glass, visiting museums and art galleries. It really kept me from thinking about what was ahead.