Medical Update- By Nathan

Elisa has asked me to take over writing the blog in regards to all of the medical information so that if she is feeling up to it she can feel free to just write about her feelings and thoughts and not have to play catch up with scan results, treatment and the like.

So it has been a long time since she has posted, so allow me to catch you up.

Since the last post Elisa had her steroid dosage level increased to try to deal with some of the symptoms she was having. The dose of 4mg daily seemed to have the desired effect and she became more stable on her feet. However long term use of steroids can be unsafe for cancer patients so they decided to have her wean off them slowly as she has done in the past. The plan is that they help her through a patch of bad swelling in the brain then she goes back off once it goes down. If we have learned anything through all this it is that plans rarely go the way you want. As she started to tapper off as she got down to 2mg she would have a resurgence of the balance issues, headaches, fatigue etc. So the docs decided the plan would be to keep her at 4mg until after the “slow study” was done then take her off. Plans.

The slow study is typically a 2-day test. It was very painful and failed during their first attempt so 2 days became 4 days and they had to repeat the test. Luckily the second time around was not as painful and was successful. The shunt and Omaya port were functioning; although the CT scan showed continued swelling in her brain and some possible “hardening” of the ventricles that help regulate the draining of spinal fluid.

So after the slow study Elisa tried once again to wean off of the steroids, unfortunately with the same problematic symptoms returning at 3mg. The decision was made to keep her at 4mg at this point. A new drug was added to her daily regiment to help try and balance out the immunity suppression that the steroids can cause. This takes us to October 9^th when they adjust the shunt draining the fluid in her brain to try and make it a little slower in order to be able to possibly resume intrathecal chemo treatment later. On Oct. 11 during dinner Elisa had a seizure. Luckily I saw it about to happen and Courtney and Eileen were present and fast acting. Sadie was quickly taken from the table by Courtney, Eileen went to get her post seizure meds and I was able to get hold of Elisa and hold her through it. Elisa didn’t hurt herself (didn’t even bite her tongue this time) and Sadie just thought she was getting out of eating her veggies and never knew anything happened. Once she had taken her post seizure meds she was out for the night. That Sunday we were scheduled to go in and have a CT scan to look at what was going on. The scan showed continued systemic swelling in the brain (CT scans do not show tumor growth). After the scan they opened the shunt back up to allow more fluid to drain. Elisa resumed 4mg daily of the steroids and would stay on it until her scheduled MRI of the brain and spine on the Oct 23^rd. During the time leading up to the MRI Elisa continued to have balance issues and headaches even at the 4mg level of steroids. The scan results would then be presented on Friday morning to the tumor board for review and input. On the day of the scan (Wednesday Oct 23^rd) Dr. Jhaveri could see that there was still systemic swelling and the decision was made to increase her steroid level to 8 mg daily.  A bright spot was they could also see that there were no tumors in the spine!  Elisa and I would get a call on Friday afternoon from her regarding the rest of the results and the treatment plan. The news was not great. Although most of the tumors in the brain had not grown, one on the cerebellum had grown. This meant that the Gemcitabine chemo was not effective and she would not receive that drug anymore. This coming Monday she will start another chemo called Vinorelbine though her chest port along with her Herceptin. Dr. Jhaveri also said that because of the continued swelling in the brain intrathecal chemo would no longer be a treatment option. In fact there are not a lot of further treatment options. Dr. Jhaveri continues to search for any clinical trails that Elisa may qualify for but thus far there are none. Elisa will also be staying in the 8mg dose for now. It has taken a couple of days for the steroids to start to be effective, but it has been two days now that Elisa has not had any balance issues, and we are hopeful that this dose level will be effective.

So that brings us to today. Today she felt good, and we hope the same for tomorrow and that is how we are moving forward. I, all of us that know and love Elisa are so grateful for all of the prayers, positive energy and support that you continue to show her. If I may, I would like to impose upon you all to say a little prayer, send a little positive energy, hold her in your thoughts and smile. We are far from done fighting, but do need all the help we can get. Thank you all so much.

Warmly,

Nathan

"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

Update - Medical

April 12, 2013:

Medical update: Last week’s chemo was AWESOME!  Seriously.  No, I’m not joking.  No LOLing.  It was week two so I only had one drug.  I had forgotten that Dr. Volm changed my regimen.  Therefore, I only take Abraxane on week two and NO intrathecal drugs.  It felt like a spa day. I’m not even being snarky.

The slightest inconvenience was a quick pit stop at the hospital. I was due for an echocardiogram.  No official word about the results, but that’s good news.  If there were something wrong, they would be all over me by now.  I can honestly say I feel well. 

The best part was a visit with Andrea, one of my best friends from college. She flew up from Tampa to stay and take care of me for three days.  We napped and watched movies together. Miss her already. 

Boo!!

Written April 4, 2013

Boo!!  Didn’t mean to scare any of you who might still be stalking the blogosphere for news about “The Bonds.” Yes, I have been a ghost for most of the last year. I’m not making excuses or giving reasons for the long hiatus.  Plenty of reasons and excuses will surface as we catch up.  Besides, who the fuck cares at this point?  What was that?  Oh, yes.  You heard correctly.  I said it.  FUCK.  Did everyone hear me?  I wanted to get it out of the way immediately.  I have no idea where this blog is going.  I do know that it will be blazed with tears – happy and sad-, salty language, lots of TV and stories about baby girl, Sadie. She is three and a half now but an only child is always the baby.  

So where are we now?  Chemo but now I am dealing with intrathecal infusions through the Ommaya reservoir, which I explained, in the last post, I think? Posting on the blog…always feels like a resolution that I never seem to stick to it.

More about the intrathecal infusions.  They require much more help than my “normal” chemo did.  No more NY Times crossword puzzles or taking the express bus by myself.  Nope, now we’ve called the village forth again.  The actual treatments necessitate assistance from close friends and family. The treatments cause immediate side effects such needing to take a shit and/or vomiting violently.  Hence, intimates only.  Luckily, I have been able to make it to the bathroom every time except the last time when I puked only to discover the next day that I had pulled the muscles in my chest from the heaving.

You happy I’m back yet? You see why I was reluctant to talk turkey.  This turkey has been shot, had it neck chopped off, its feathers plucked, had foreign things shoved up it’s ass, slow roasted, basted and hacked into while doctors, friends and family alike, keep looking for the wishbone. 

Oh, speaking of chemo, time to get ready for my ride in.  It’s a week one so wish me luck.

Sunshine to Surgery

"Above all else, go with a sense of humor. It is needed armor. Joy in one's heart and some laughter on one's lip is a sign that the person down deep has a pretty good grasp of life."

Great amazing vacation in St. Maarten.
Fabulous 40th celebration for Nathan.
Shitty news about my brain.  Six old lesions grew. Now a total of ten.  Some on dura and some inside the brain.  Consistent with leptomeningenial cancer.  We have to attack the cerebral spinal fluid (csf) directly.  Neurosurgeon will implant an Ommaya reservoir in my brain (see link below).  Intrathecal chemo and Herceptin will be administered directly to the brain once a week every week.  Duration undetermined.  Will receive regular chemo same day with regular chemo schedule.
Freaked out, scared, angry, sad, worried and still positive.  Good reason to believe that the Herceptin with be our miracle.  It has proved to be so far.
Completed my pre-surgical testing today, met surgeon and got medical clearance for surgery on Wednesday.  Surgery on Wednesday.  Should be there at least 36 hours assuming counts are good. Thursdays my birthday :)))))!!!!

And here we go again.  More prayers, more good vibes, more everything please.

xo, E

http://www.atlantabrainandspine.com/subject.php?pn=animation-ommaya