CarynRose

Disclaimer: This central nervous system stuff is screwing with my typing and spelling. I'm doing the best I can, but please excuse my quasi-English.

Well, we had the best intentions. I didn't want to let cancer get the better of me in terms of living my life, but after 3 hours of trying to take a shower and dressing, I experienced an extreme fatigue and weakness that I've never had before. I couldn't even manage to raise my voice loud enough so Steve could hear me. And I had a stomach ache, something that I'm not known to have.

The thought for me was that if my central nervous were shutting down, that it would also be affecting my internal organs.

And so, we called CTCA and we're heading there for triage tomorrow. They said pack a bag because they might admit me.

This seems to all be happening so quickly, but right now, I don't have details and so I'm trying to just 'be' with what is happening and trying not to let the fear overwhelm me.

I don't know how often I'll be posting, but I wanted to update you.

Love,
Caryn

OK, I'm at CTCA. Was admitted today in waiting to get to Temple in Philadelphia to have an Omaya Reservoir installed in my head. That will enable us to directly infuse chemo into my cerebro-spinal fluid and eliminate the few cancer cells that they have found there.

OK, so how did we get here? Those who are familiar with cancer know that when someone is given systemic chemo, it usually doesn't cross something called the brain/blood barrier. That means that as they were giving me what they were last year, it was getting at the cancer 'from the neck down', and quite well, thank G-d. However, there were probably ALWAYS seeds of cancer that ended up in my central nervous system. They weren't reached by the systemic chemo and they lay in wait, unseen. According to Dr. Willis, only a very few cancer cells pressing or bothering on nerves can cause a rather pronounced reaction, and this is what he thinks is happening in the case of my facial paralysis.

Anyway, right now, the plan is to use methotrexate into the CSF (cerebro-spinal fluid); however, there are other things that Dr. Willis has up his sleeve, including bringing in radiology for possible tomotherapy and using an oral chemo (don't have the name off the top of my head, but it begins with a T, I think. It's supposed to make chemo more effective on breast cancer cells.

How it will work: (disclaimer -- if you are queasy, skip this part, but in the interest of full journalistic expression, here goes). Each chemo treatment will begin with them creating a sterile field on the top of my head. They will withdraw a small amount of CSF and replace the same amount with chemo. On a regular basis, they will test the CSF for cancer cells and adjust as necessary in terms of frequency and amount. I don't know how long this will go on, but the shorter period of suffering, the better. I'm told from start to finish, the entire chemo treatment would be about an hour or so??? I don't know what happens to me after that. Do I stay at CTCA? Do I stay at a local hotel? Do I go home?

They just came into the room and told me that I may be going over to Temple University Hospital this afternoon for surgery first thing tomorrow and then watching my healing there for a day or so. Then, possibly starting chemo at Temple.

From what I understand, this will probably be the hardest chemo I've ever had. I've been so lucky up til now -- very little nausea, living more or less vertical for most of the treatments, etc. They think that this one might knock me down for the count somewhat more. And I'll have a shunt in the top of my head.

I think what Steve and I will need is a lot more logistical help than we have in the past. I don't know what it will look like, but I know that there will be times when he'll have to be at work and caring for our home, doggie, his dear, dear self, his folks, his daughter, my mom, etc., etc. and I'm gonna need someone by my side to help advocate for me. I know that many of my family members are far away and very busy, but I am asking you to please try to see yourselves clear to maybe schedule time to come to NJ or PA (it's not that far) and help out.

To those who live in the Philly/South/Central NJ area, I'd love for you to visit. I don't know how I'll be, but having you around just helps me. I might not be a great conversationalist, but feeling your presence and energy will help me heal. And, it's a great thing to do for the soul... LOL.

I feel all your love and your prayers and surely if that is all it takes, this cancer thing will be beat. For now, however, there is lots of medical work to be done; lots of red tape and ridiculous BS to be surmounted to get a cure for cancer. And not enough is being done. We MUST do what we can to grease the treads. And maybe that starts with voting tomorrow in the US. I'll tell you that my choice is Barack Obama because I don't think that the republican plan will allow for the incredible increase in research that is necessary to move this forward.

Maybe I can be the first BRCA1+/triple negative stage 4 CURE.

Love,
Caryn