No surgery this week

So the dr had told us I should be operated on in 2 weeks, but apparently forgot that he was going to be out of town this week (the 2nd) week.

Kind of frustrating seeing as how my sister is trying to come from Ireland and my mom is coming from Arizona...and we need a schedule.

I did inform their schedule person of my family's travel plans, but she said a different scheduler would call me tomorrow to work it out. I'm not sure where we misunderstood (I don't think we did) but I really want to get this done, as I'm experiencing occasional eyesight flickering again.

At least they called me back with information. Its irritating, but there's nothing we can do about it. Hope the dr has a good week off. It would be best for me if he does.

Got a cookie scooper handy?

We met the neurosurgeon today and he explained in detail what I need done to get the tumors taken out of my skull ...

Kinda scary stuff but I really need it. The big tumor is likely surrounded with blood and that's pretty dangerous if it keeps spreading.

In roughly 2 weeks he wants to do the corkscrew in the back of my head, and then 2 weeks after that we'll go under Gamma Knife for the other 3 tumors as they're under 3 mm ...

Apparently the main surgery will take about a week of recovery and the Gamma is pretty much immediate after.

So I really am looking forward to getting this done. There are of course chances of complications anytime someone takes a cookie scoop to your brain but I do want to make some progress and I haven't been able to be normal in over a month and I need to be able to use my left side normally as well as sleep through the night.

Okay so this is scary but its the most likely to make things start to improve and I'm feeling solid about the surgeon.

I'll keep updating and once I have the date I'll post.

Got an appointment with a neurosurgeon

So I just got off the phone with the office of the neurosurgeon and have an appointment set for tomorrow afternoon.

Pretty fast for that since we just had the other meeting Monday .

Hopefully that means there is something the new doc sees he can do? I dunno but I need to think positive on this. We'll see if he thinks the large mass is liquid or solid. If its liquid I'll get to look like a Borg with a shunt to drain it out, but if its solid its still too large for gamma knife. I'm that case it's knives and spoons removing brain tumor.

More to come, and soon...

MRI Results and What They Mean

So the basic results are:

It doesn't appear that the big tumors reduced at all. The big question is whether the masses are solid or liquid. That will be a large determining factor for surgery and what kind.

There had been bleeding in all 4 of the brain mets, but that's all stopped with the radiation
Getting a direct before and after comparison is difficult as the comparison scans are CT scans vs. mri's with contrast.

It's not doom and gloom, but this isn't great as we're going to have to see a nuero surgeon to consult. Apparently the big tumor in the back is pretty large. The dr felt it and the other 3 could still be reducing from the radiation but generally speaking, nothing appears to be reducing. No bleeding in the brain is good news. I likely would've not lasted this long without the radiation, so it wasn't a waste, this is just the first time I haven't had more encouraging scan results.

The MRI machine was super claustrophobic but I managed to not freak out, and no passing out while laying down, which was kinda nice.

I don't know, that I would say it was a waste of time to have done the radiation, but maybe. With all the side effects and such, argh...! If I need surgery it might be a combo of regular neuro surgery for the large tumor and Gamma Knife for the other 3. I just hope the cure is worth the time and side effects.

I sure wish this were more upbeat and good news, but it could be much worse and I'm crossing my fingers that surgery happens and delivers good results. This is the first time I've not had good news. I'm hoping surgery if its the option, works..

One week from MRI appointment and address woes

So not much to report other than I have my MRI appointment scheduled for next week. I took my last steroid 1/2 pill today, and hopefully the brain tumors are reduced enough to not need to undergo a gamma knife surgery. It would be amazing to know my brain is able to do its thing adrenalin-wise and I won't need to rely on these pills anymore.

I'm able to walk from the bedroom to the living room while bracing myself on the walls or pushing my wheelchair which is a big improvement and hopefully will keep being better, - my right side seems pretty normal, but my left side is a bit out of control (floppy) relatively speaking. Trying to play my acoustic guitar is funny all in all. My question that won't be answered for months is, will I play like I used to or have to relearn how to play all over. Seems like my right side is almost there...

At least my disability stuff is getting sorted out. I was worried they needed more info and or proof of my change of address to get my march check, but they called and my account manager had entered the address incorrectly from the address update we faxed in. Thank goodness she caught that and isn't going to make me jump through more hoops to get a check out. If you've read earlier installments, you know the payments have been a real source of anxiety at times in the past. Of course until we actually get the march check its not very helpful, but I trust they'll get a check to me.the fact they can't do direct deposit is crazy, but I suppose they'd prefer to be late and not pay someone who might have passed...? That's my guess anyhow.

I wish that were the least of my worries - and that so many people weren't passing from cancer related or other illnesses. Just weird how the past month seems to have news on Facebook every other day. Maybe it's just that time of year, but make sure you tell your loved ones how much they mean to you - do it for me if you're not feeling it, let silly things go, and hug each other.