Wednesday, May 9, 2012

Ahhh...not exactly what we had hoped for - Relapse!

It's been forever since I wrote on the blog...mainly letting Elizabeth take over. Everything seemed to be falling in place for us...she was in remission, we began building our house, sold our other house, Anna and Lyla were filling our hearts with joy, etc. You name it...it felt like things were going just right. Then...

April 30th was just a normal Monday...well, except for this Monday was finally the day that Elizabeth was to get her first post-treatment PET scan. I told her that I would see her that evening after work - but to call me after the scan just to see how things went. Just like September 17th, 2011 - I'll never forget the call. Elizabeth called and said that Monica (Dr. Pallera's nurse) had called and they wanted her to come back to West Clinic. There were some suspicious spots found on her lungs and chest. Wait...what? Seriously? This couldn't be happening. Not now. Not right now. Things were...were...were just fine yesterday. Two hours ago. After thinking about it and how rare it would be for a relapse so quickly, I immediately thought infection or inflammation. It had to be that. So, we made our way back to West Clinic for a 2:30 appointment to see Dr. Pallera. He came in the room and looked distraught. This didn't have a good vibe to it. I knew something was seriously wrong. What did he see that was so concerning? He told us that there were several concerning spots that they found on her PET scan - things that were not there just 4 short months ago and only 12 weeks removed from radiation. What is it?

He went on to tell us that there were 3-4 spots that were enlarged with loads of activity in her lungs that gave him pause. He wanted to do a needle biopsy on Wednesday and see us that Friday. If his (and our) fears were confirmed, then treatment would need to start soon. But Doc, couldn't it be something else, I asked? It could be but not likely. His gut told him it was recurrent lymphoma - he just needed to find out if it was Hodgkin's again. Obviously this was devastating news. We had started the day just like any other day and then BAM...back to reality. Cancer has a way of doing that. Needless to say, we scheduled the biopsy and had it done on Wednesday. We talked to Dr. Hodgkiss, her radiation doc at West and he was fantastic. Can't wait to talk to him again soon. Upbeat and very positive about her treatment possibilities. Elizabeth was a little sore from the biopsy for the rest of the week. It was uncomfortable and because her tore into her enlarged lymph node, I'm sure it was inflamed making her newfound shortness of breath even worse. Of course, this would all happen as we were moving...supposed to be out of our house by Sunday, May 6th. And then....

Friday - May 4th. Another day that was seared into my memory forever. We woke up and got Anna off to school. We were both so anxious to find out what was going on that Xanax barely took the edge off. I asked my boss not to drug test me for a while...I might be taking some anti-anxiety meds. In the grand scheme of things, we knew what the results said. We prayed our tails off but I think we both had that sick feeling about what was ahead...so at least we were prepared for the worst news and hoping for the best. Dr. Pallera came in and told us the news...her Hodgkin's lymphoma was back. It was apparently sad that it didn't get to wreak enough havoc so it came back for seconds. Dr. Pallera went through the possible treatments and told us that the cure rate for someone with recurrent lymphoma was cut in half from her original diagnosis. Huh? 30-45% from 90+%? Oh man. Well, I had already schooled Elizabeth on the odds. I hadn't stopped reading about it since Monday. I mean...obsessed. I looked into every chemo regimen out there. What gave Elizabeth the best shot at outliving me? What would be best for a potential "cure" - not just a life extender? It came down to a few treatments, although it's a mixed bag in terms of results. ESHAP seems to be the best option...and Dr. Pallera said that's what he wanted to give her. (E) etoposide, (S) solumedrol (steroid), (HA) high-dose Ara-C (or cytarabine), and (P) platinum (cisplatin). That's our new acronym...our new hope. Is this the right drug? Ya damn right it is! I know it is!

Dr. Pallera explained that she would get at least 2 doses of ESHAP. It's given in a 5-day regimen with 23 days off after infusion. Then it starts all over again. Etoposide and cispatin are given with steroids on days 1-4 and cytarabine is given on day 5. These drugs are rough...and have a variety of side effects. Of course, Elizabeth will likely lose her hair again starting on week 3 or so. Looks like a "cool" do is in order for the summer. She looks great bald so that's not a big deal. So what's the plan? After 2 doses of ESHAP a scan will be done. If - and when - her PET scan shows her to be in remission again after ESHAP then she will undergo a high dose chemotherapy with an autologous stem cell transplant. The high-dose chemo is called BEAM - B - (BiCNU or carmustine) - E - etoposide - A - arabinoside - M - melphalan. Man, there are some serious acronyms in the cancer world. Ha. Hard to keep up with them all. For instance, the 5 treatments most common for recurrent or refractory lymphoma??? ESHAP, DHAP, ICE, IGEV, or SGN-35...C'MON MAN!!! Just a simple name won't do for us science nerds. Anywho, after the BEAM, she'll have a stem cell transplant. Sometime between her 2nd ESHAP and BEAM, they will harvest her blood stem cells and freeze them. The BEAM treatment will take her WAAAYYY down...and then they will re-inject her stem cells back into her blood and bring her back to health. It's a rough way to do things but it gives her the best shot at long-term remission. A recent study from MD Anderson's stated that if a patient receives a clean PET scan before there transplant, then there was a 70% chance of a 3+ year remission vs. 24% if there wasn't a clean PET scan before the stem cell transplant. We'll take option number one please! Lol.

I've researched this crap to death...it's what I do. We asked for a 2nd opinion and the oncology department at Tulane agreed with her treatment. That makes us feel better. It's not that we don't trust Dr. Pallera - we trust him completely - it's just that it's nice to have others confirm something for you.

Soooo...it's back to blogging again. Not because I loved it (I did like it though) - but because so many people love my Elizabeth that I feel like I need to keep them updated. She is my world and I'd do whatever it takes. I wish that this disease had been bestowed upon me because she doesn't deserve it but there is really nothing that I can say or do to change the hand that we've been dealt. We have to just keep on pushing...fighting this nasty, no-good, rotten disease. I know what the numbers say about a cure...but they don't know Elizabeth. This disease doesn't stand a chance. It may have come back thinking it was going to take her down but it's only pissed her off and she decided that this time...no holds barred. It's on! We are now 3 days into treatment and she is feeling pretty good. Nausea has been minimal so far and she has felt good enough to get out a little. I'm so proud of her - so damn proud. She is a trooper, a fighter, a warrior - whatever word you can think of to describe a true bad-ass! And because she reads this...I want to let her know that I will be here every step of the way...through hell and back! She inspires me to be a better person and I hope that one day I can be half the person she is! I love you baby and will move mountains to bring you back to health! We WILL beat this - we WILL win - we WILL have the last laugh! Why? Because you can't measure a person's will - and your will is stronger that anyone I know!

Fight on chick! We're in this together!


Scott


P.S - We have been overwhelmed by the support. We have the absolute BEST friends and family in the world! You guys make us feel loved and we can never do enough to re-pay you all for everything that you have done. It makes us step back and realize that we are lucky...not exactly what you'd expect from someone dealing with cancer - but we are lucky because all of you are in our lives! Much love friends, much love family! ALL IN!




8 comments:

  1. Praying for you guys! <3 Stefanie

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