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.

Another opportunity for accepting what is.....

Today's meeting with the neurosurgeon confirmed what I knew to be true. I need to have much more extensive surgery to remove all the cancerous tissue in the region of the C6 vertebra. Even though this news was expected, it is much more disheartening because I am feeling like my old self again....no more pain, very little residual neuropathy and lots of energy.  Ready to get back to golf, pickleball and life as I knew it. Now I face all the risks of surgery, the extensive pain of recovery and the possible lasting side effects.

What I know is that the surgery will be extensive. The surgeon will go in from the front and remove most of that part of C6 and dissect the tissue around the artery to the brain and  the nerve to my left arm. He will replace the missing tissue with mesh, cadaver bone, and a plate. Then he will turn me and go in from the back removing most of the left side of the vertebra and any remaining cancerous tissue. He will then fix everything in place with two screws.

If all goes well, I will be in a rigid cervical collar for three months with restrictions on lifting and activities. It will be six to 9 months of recovery before I should have about 90% of my range of motion. I will need to take a year off from golf, but if everything heals well and the tumor is gone, I should be back to golf and all other activities next Spring.

The surgery is scheduled for March 4th, but they are working on moving it up at least a week, maybe two. This means that I will be able to go to Arizona for two weeks to relax, soak up the sun and play a little golf. That should be really good for my psyche as I need a really need a boost at the moment.

Good News/Bad News...again

Really, Really...sometime I wonder how much more I can take! The news from last Friday’s CT/PET and MRI scans is both good and bad. The good news is that there are no new tumors detected. 

The bad news is that the neurosurgery did not remove all of the tumor in the C6 vertebrate in my neck and there is an area of new tumor activity in the part of the cervical bone that is left. This probably means that I will need much more extensive neurosurgery to try and remove all the tumor. My oncologist is conferring with my team of oncology surgeon, neurosurgeon, radiation oncologist, and immune therapy specialist to brainstorm what therapies we should pursue. 

I must admit that I was really disappointed with this news. I had my hopes up this time that I would be free of tumors for a while, but the news could have been much, much worse and for that I am grateful.