Monday, March 1, 2010

Good Scans, Bad Fevers...

I appreciate everyone's patience, I've slowly tried to sort things out in my mind before I write things down for everyone to read. So, here is the deal.

Last time I wrote, my fevers were subsiding and we were heading to New York to visit Dr. O'conner. I felt GREAT, we left at 10:00 am for NY and did not return till midnight that night. It was a long day to say the least, but I received great news after my scan.

Everyone knows cancer grows, after two and a half months I did not expect a ton of growth but my moms and I definitely expected something. After an hour sitting and discussing future treatments with Dr. O, I finally asked "Well! What about the scan?!" He smiled and said there was absolutely no growth in my disease, in fact, some of the tumors had slightly (ever so slightly) decreased in size. It makes absolutely NO sense medically or rationally -- but hey, we will take this one. After he released this information the moms and I were in total shock, we didn't even know what to do with the information. Dr. O attributes this 'odd' scan to the SAHA (the drug I was previously on). 

This is what I hold onto now, remembering how deathly ill I was those few weeks in the hospital, that this drug did something for me, and its holding my disease, this means my next treatment could really attack my cancer if it's not moving -- these are all good things, this is the silver lining. this is the silver lining. this is the silver lining...

Unfortunately, the trip to NY was exhausting and for a patient who had previously been running 103 fevers the previous two months, stood and talking, and exposed myself for a solid day on trains, cabs, and in Dr. O's office, the next day... my horrible symptoms of fevers and vomitting returned. Which is why you have not heard from me.

Usually it's no news is good news, but once again I've been trying to recover. The 103 fevers returned around the clock, the vomitting followed, the fatigue followed that. Of course nothing showed up again on cultures, x-rays, or any other scans and we knew since the scan revealed no growth that this was not the cancer doing damage. Once again, I was put fluids, IV zofran, anti-biotics, , and I am at the end of my course, thankfully, I'm back on the bike, the fevers once again have stopped along with the other symptoms. We hope, hope, hope, that none of these return after the anti-biotics and fluids are discontinued.

Honestly, we're all tired. The fevers take so much energy, and attempting to put on calories at this point pretty difficult -- but hopefully we've seen the end of the fevers, and the moms are constatly trying to plump me up. I feel strong, my worst fear however is just the return of this infection/virus or whatever it is that was inside me for so long.

Bottom line, we have decided the best treatment for me after talking with Dr. O'conner for over an hour during our consult. After reviewing my options from Upenn, Dana Farber and NYU, SGN-35 is on it's last phase before it will (hopefully) be FDA approved in 2011. There are a lot of details to this treatment, this phase differs drastically from other SGN phases because they need to postively put this together perfectly so it CAN be FDA approved -- this means more monitoring, more blood tests, but this also means, it is highly unlikely that things will spiral out of control like the last trial.

We're shooting for a mid to late March starting date, and I will update again soon with side effects and treatment cycles on my next post.  Again, this feels like it's been a long road... and we're all hoping for brighter days.

Hope all of you are keeping warm, as the sun finally melts the snow and begins to show its face more here in PA, I also hope to be back up and shinning very soon.

Sending Love,

B

7 comments:

Bob&Linda said...

Hi Bekah,

So glad you have had good news and hope you continue to feel better. You are a constant inspiration to all of us.
Love,
Linda, Bob and Jenny:)

laulausmamma said...

Hi sweetie - glad the fevers have subsided since we "chatted" the other night (which was wonderful to do I might add!) Hope and pray you've had the last of them and can enjoy some yummy and body plumping meals again.

As always - sending lots of love your way.

Susan
(Hi Linda, Bob and Jenny - see you on the 18th at our RFL Karaoke fundraiser ; )

JoAnn said...

Hi Bekah,

I was so happy about the good news! I can only echo what was already said in that you ARE an inspiration. Hope the fevers go away for good and you are enjoying eating more.

You are in my thoughts.

JoAnn

Skymist said...

So glad you are doing somewhat better after your trip. So, the fever returned after you underwent the stress of the travel. I get that all of you are in the dark as to the nature of the fever, but normally, one would expect that fever is a response to an inflammation. A weakened immune system due to stress can allow an infection to increase. But they found no infection. So, it's still a mystery. But at least, you know enough to guess that taxing your system right now might lead to fever again. It's a game of inches. Not a good time to play in the snow, perhaps. Anyway, I'll be watching and listening. Gain more WEIGHT and stay POSITIVE.

Veronica said...

FAB news Bekah........I love good news from you girly!! It was a long, horrible journey but to know that the Hodge has been held at bay makes some of the trauma worth it..........here's hoping for a lasting recovery and more energy every day...........love as always, Beautiful B..........<3

Samantha said...

Good news Bek! Very happy for you. I miss your face!

Sivan said...

Sweet Bekah, glad to read you're doing better! Looking fwd to reading more good updates. And want you to know I'm thinking of you, and keeping you in my prayers! Big hugs!
<3 Sivan