Saturday, August 17, 2013

"Walker" this way...

This is what it's like when you haven't called a really good friend for far too long. You start thinking "well, I can't do it now. I don't have an hour to catch up," so you keep putting off. But each day you procrastinate you know the call is getting longer and longer.  So sorry again for this long hiatus.

My friend Marcos was here two weeks ago and insisted I write something on the blog.  I hope your are happy now mi mejor amigo.

Ok, now to what you've come here to see/read.  For the majority of the summer I have been feeling well but in the last 6 weeks I have had quite a few falls, dizzy spells, weakness in the legs, severe headaches and lack of stamina.   I can't walk by myself anywhere and I only have 1-2 hours of steam in the morning before I need my nap.  The most frustrating part is the of lack of stamina and mobility.  I had to give up public transportation, driving and now it's walking.  I mean, if I didn't have my family and friends I'd be a candidate for meals on wheels.

Speaking of wheels and transportation, a bunch of my friends have suggested get a Jazzy type of vehicle.  Since I can't drive, I don't trust that I wouldn't crash a small vehicle and especially one without   airbags.  A major part of the problem is balance which causes my falls.  A cane has been suggested but it doesn't address the stamina issue, so I have solution.  I need a walker that has a seat in it for when I get tired.  I live in multi-generational neighborhood so they quite ubiquitous.  But I want to be bold, dare I say, avant-garde.  I'm gonna PIMP my walker.  Oh, yeah!  You heard me!! I'll spray paint it, add stickers, a bell and streamers like I had with my first banana bike.  It'll be dope, yo! I'll post pictures.

So back to medical stuff.  I was due for some scans anyway but now there was an additional intention to discover why I was having the aforementioned symptoms that only seemed to worsen.  I had an EEG (to look for seizure activity),  I hadn't passed out during any of my falls and results confirmed that.  I had a Head CT, a Brain MRI and a PET scan.  The head CT looked normal and the PET scan looked great.  There was no sign of disease from my neck down including my spine.  Woohoo!  However, there was edema and progression of the LM lesions in the dura of my brain.  So my new oncologist, Dr. Jhaveri, did I mention that I LOVE HER,  decided on a plan she wants to start next week.  She conferred with many of her neuro-colleagues some who specialize in neuro-breast cancer at a Tumor Board they have on Fridays.  Brain lesions are incredibly small so in the body they would be considered steady and the rate they have grown since January but obviously in the compact space of the brain the ratio is very different.  The consensus by the board was that it wasn't just edema but true progression.  None of them had a clear cut answer on the next steps though.  A case like mine rarely exists so there is no data. Again, I'm patient x, of course.

Dr. Jhaveri also reached out to different research facilities to see if I qualified for any of their current trials.  At this point I do not fit the criteria of any of current ones because of the interventions I have had already but she said she is going to continue looking.

So here's the current plan:
No drugs intrathecally until they do a "slow study."  Essentially a dye will be administered into my ommiya reservoir very, very slowly to see if there are any areas that might have caused the leakage back in April, or are causing any of these new symptoms.  If all is clear, she may start the intrathecal again but with a different agent call thytiopia.   This is at least a few weeks from now.

Wednesday I will receive, through my chest mediport, an all inclusive chemo call Gemcitabine.  It's good for the whole body but it also crosses the brain blood barrier to attack the LM lesions in the brain.

Due to the leg weakness, stamina and balance issues, Jhaveri has prescribed a rather decent dosage of steroids.  I have to be careful though.  The last time I took an even lower dose of steroids, I thought I was Wonder Woman and cleaned all day.  It felt amazing until the next.  I was toast.  It's a totally fake strength.

I am sure that a lot of this sounds bad but in spirit I feel fantastic.  Sadie will be turning 14, uh, I mean, 4 in September.  A funnier, sweeter, bolder, smarter, more stubborn, stronger, person, I have never met. Everyone believes she is what keeps me going and it's true but not for the reasons one might think.  I love her, I like her, I am fascinated by her and I can become insanely frustrated with her.  She constantly challenges me to be a better person.  She is one of my greatest teachers.

Well, that's it for now.  Please pray or mediate or whatever you do for the JOY I feel, not the pain.  The JOY heals.

xo, E