The Battle of 2008 Begins

My new year, it seems, is off to a very rough start.

I remind you that things had been progressing fairly smoothly recently--in remission, I was just passing a few weeks until time came again to try stem cell collection for a second time. The plan was to start Neupogen injections again on Thursday of this past week.

The week of Christmas, I actually went to Pittsburgh, mainly because I had nothing else going on, and also because I thought it would be a nice brief getaway and change of scenery. And it was both. On a brief break from my neutropenic diet, I spent several days on my own in my apartment, making great salads and other recently forbidden items. Unfortunately, due to the holiday week, most people that I knew were not around, so I didn't actually get to see anybody in Pittsburgh, but it was still nice.

On Friday of that week, I returned to New York to greet my friend Megan, briefly back from several months working in Kenya (and not a bit too soon, I'd say!)

However after a couple of days of hanging out with Megan, by Sunday I found myself too tired to keep up and was canceling plans on her, which I felt rather bad about. I even had to bail on some spectacular New Year's Eve plans that Alissa had made for the three of us.

--

Sunday night, I was really tired and feeling generalized malaise, and began to have a fever too. By Monday, it was mild fevers all day. I called Dr. M's office, and his nurse told me that while I could keep an eye on the low fevers, if they did get high I should go to the E.R. and be checked out.

The fevers, as you'll recall, were worrisome during my chemo and the periods of neutropenia, when my white cell count was very low and I would be very susceptible to infection. That was in fact the reason why I ended up hospitalized in early December. But this time, I was a bit puzzled--being 5 weeks out from my last chemo, I wouldn't expect to have low blood counts at this point, and not so prone to random infections.

I had already cancelled my fun plans and resigned to New Year's Eve at home, but as the sun set, the fevers rose again, and I was at 101. So off to the Stamford Hospital E.R. we went, where I remained until 2008.

The fever work-up did not show anything remarkable; in fact by the time I was at the hospital, I had no fever, and my blood tests were basically normal. While there and waiting for everything to happen, I happened to develop a really annoying pain in the right side of my chest, which would get worse when I'd take a deep breath or press on my belly. We first didn't think much of this, but a slight abnormality of one of my liver enzyme tests, combine with the belly pain, lead the E.R. doctor wanting to rule out a gall bladder attack.

This extended our stay into 2008, since he ordered an ultrasound, and the technician had to be called in from home. By the time he arrived an hour or so later, my strange pain had actually gone away. But we did the ultrasound anyway, and it showed my gallbladder to be normal and not inflamed. Incidentally though, while doing the scan, he noted a couple of unusual spots appearing in my liver. I didn't remember anything like that from previous scans, but tried not to be alarmed.

--

Home the next day, I had no more pain, but was still feeling awful. I still had fevers, though all low-grade, typically around 99 degrees and change. but it was just constant. And accompanied with some chills, sweats (yes, night sweats too), and weakness.

I spent the next couple of days in bed, eager to see Dr. M for my appointment on Thursday and to see what he thought. While the fatigue and chills were enough to keep me in bed and under the comforter, the fevers rarely broke 100, so I never actually had to do anything about them.

On Thursday, I finally saw Dr. M and filled him in on the events (he already had a heads up, having gotten phone messages all week).

"The first thing we have to to do is to re-stage you right away", he said without missing a beat as soon as he saw me.

"I'm hoping all you have is the flu or something, but you and I both know what this could be and we have to get a scan of you soon and make sure it's not something bad."

The doctor-to-doctor talk. I often feel like Dr. M is one to leave certain things unsaid, when he knows that I know.

Lymphoma as a cause of the fevers was obviously also on my mind as well, and also under the worst-case-scenario column. His acknowledgment of this worry was scary, but at least we were about to figure it out.

A few phone calls were made, and the office staff arranged a body CT scan for me that afternoon. I had the scans done, and met up with the family for lunch, before heading back to Connecticut a couple of hours later. It was in the car ride home that I got a phone call from the nurse. "Dr. M and Dr. H are here and have just reviewed your scan, and unfortunately it does show several lesions in your liver."

And there went my optimism.

--

The day after, I was back seeing Dr. H.

"There are a bunch of people for whom I was really hoping for a great new year, and you were right at the top of the list. I'm really sorry that we are in this position now."

He showed me the CT scan of my liver. It wasn't just one or two spots; they were everywhere--dark circles all over the place, like soap bubbles--as big as three or more centimeters.

From remission just two months ago, I was now looking at a cancer that was not only back, but returned aggressively and was now all over my liver. I was stunned.

None of this was on my scan in late october, which was totally normal. He said there's no way to know whether this happened over the last two months, during chemo, or if it happened more recently in the weeks since the chemo ended. His guess was the latter--knowing the typical course of this disease, it is fast and aggressive, and he thought this has probably not been going on very long. All the more reason to fear the next few weeks, and the need to act fast.

Dr. H told me we have a couple of possibilities, but he also pointed out that either way, in this situation we were totally "out of the box", so to speak.

There's a new experimental drug called pralatrexate, or PDX, which is being developed specifically for relapsed or refractory T-cell lymphoma, which he thought has the most promise right now. It is in a Phase II clinical trial, and our first hope right now is to try this. There's just one snag, and it's that the criteria to be in the clinical trial includes a platelet count of 100, which for me is a really high number.

If not pralatrexate, the "Plan B" is another chemo drug combination called DNG. Also developed for relapsed/refractory PTCL, this one is not experimental, but it's also new, and who knows how well it might or might not work.

Before the end of the office visit, Dr. H did another bone marrow biopsy on me, and sent me home with three days' worth of high dose steroid pills. His hope is that the burst of steroids will sort of boost my metabolism, if you will, causing my body to make some extra platelets, and maybe bump me over 100 that I need to be in the clinical trial. I go back to see him on Tuesday, and see what happens.

The one good turn of events is that, perhaps because of the high dose steroids, I feel really well and energetic today. Got up at a normal hour, no fevers, and haven't been in bed at all. I'll take whatever I can get.

--

So that's my first six days of 2008. I hope you've had a happier new year than I so far. I'm almost sure you have.

I'd like to try to explain how I'm feeling about all of this, but I don't even know that I can. "In shock" is really the only way that I can describe the last few days. It has all happened so quickly. Just as I was getting ready to think about being done with my treatment, ponder returning to my regular life, everything falls to the floor.

I've been fighting this battle against lymphoma for some time now, with some definite ups and downs. But for the first time, this part feels like losing.

I have to admit, I'm still trying to figure out how to be hopeful about the future. Right now, I think the most I can muster up is wishful.

Comments

[Rivka Spivak]

Sam - your friends want to be there for you. To rally for you, support you and do whatever it is that we can. We don't all know what that is - how to best help or what to do - but we're going to try and hope that you know you can ask your friends for anything.

[Andrew]

Hey Sam, hope your "plan B" works. All of your friends are pulling for you!

[Adrian]

Hey Sam, I just wanted to let you know that I'm here for you too, if you're in CT and need anyone to hang out with, just let me know.

[Arian]

Hey Sam, like Adrian, I am also here if you need anything or just want to hang out. In fact, it's easy enough for Adrian and I to hop a train down to Stamford. Just let me know.

[Paul]

Have you and Drs. H and M discussed getting treated in Europe or another location where the clinical trials are typically further along?

[vc]

Sam,

I ain't a prayer, but my heart is with you and in my throat at the same time. I hope plan B goes well, but there's another 24 letters of the alphabet after B. Don't lose hope. Your spirit needs to be fighting for you!

[Andrew Petro]

Hey Sam, I too wanted to voice my support. If there's anything I can do... Praying for you.

[Dr. Sam]

Thanks folks... But we are still hoping for Plan A here!

[Shawn]

We're all wishing right along with you Sam. And even hoping too. :) See you Sunday!

[Donna G. Vera Paul Vera's wife]

Paul has been keeping me informed on your battle. The last page brought tears to my eyes. I will pray for your platelet count to get over 100 and for the cancer to start retreating. Hope and pray for a miracle. I know that sounds silly, but I believe great things can happen even when we lose.

[BT]

sam-o, we are all here for you. i can't imagine what it feels like, but know that we are pulling for you! try not to give up. we love you!

[Hooman]

Sami, if lives were Theme Parks, your's is offering the grand daddy of all Roller Coasters. After all the wicked twists and turns, you have now done a hard bank into a tunnel, upside down in an apparent free fall, with lots of scary sounds in the cold misty, darkness. You must trust that you will come storming out of this tunnel, back out into the light, and eventually pull back up slowly to the turn stiles, from where we're all cheering you on in amazement as you take this frightening ride, daringly and bravely all the way through.