July 27, 2011

• Even worse? Is that possible?! Oh yes, it is.

  Posted by Stephanie  10:00pm CST  from the apartment  Houston, TX

  One of the greatest fears I’ve carried with me during my 5 1/2 year journey with cancer is hearing the words, “There’s nothing else we can do.”  While I didn’t hear those exact words today, I did hear a variation on them, and what I thought was going to be a routine (for me, anyway) surgical consult quickly turned into a nightmare. 

  Ang and I waited for quite awhile this morning in the thoracic center.  Once we were finally called back, we saw a nurse, a nutritionist, and two different physician’s assistants, then waited some more before finally seeing Dr. Swisher.  Seeing as how he’s done all my previous chest surgeries, I was totally at ease when he walked in, but that comfort rapidly dissipated when he began to explain how truly tricky the location of that hilar lymph node mass is.  Turns out it’s not only sitting right between my heart and left lung, but it appears on the scan to be nestled in amongst several very important arteries and veins.  It’s size doesn’t help matters, but Dr. Swisher said he wasn’t even sure that reduced size would’ve made much of a difference because of it’s placement.  He went on to say that the only way that he could guarantee total removal of the lymph node with clean margins is to remove my entire left lung, and he’s not willing to do that A) because it’s a drastic move and B) because I have disease in my right lung also.  It doesn’t make sense to remove a whole lung when we can’t be sure the other lung will stay clear. 

  Dr. Swisher said there was a chance he might be able to remove some or most of the mass without needing to take a whole lung, but that it was very risky and would probably not be totally successful.  He asked if Dr. Benjamin sent me to him now for surgery because we were out of chemo and other treatment options.  “No,” I said, “I’m here now because chemo stopped being totally effective, and Dr. Benjamin thought we should go ahead and take these spots out, then reassess followup chemo options after surgery.”  Dr. Swisher said that if there were any other chemo options, that we should try those first, and he decided to step out and call Dr. Benjamin for his opinion on the matter.

  We’ve been at this long enough that not much phases me anymore, not even getting bad news about scan results or learning treatment will take longer than expected, but as soon as Swisher left the room, I burst into tears.  My brain went into overdrive.  Surely once Dr. Benjamin found out that the lymph node wouldn’t be as easily removed as first thought, he would have other ideas we could try.  I know I’ve been on a lot of chemos, and not many of them have worked, but there’s still ones to check out, and clinical trials, etc.  I truly believed he would have another option, but when Dr. Swisher came back in the room, he said just the opposite.  Dr. Benjamin didn’t feel there was a chemo option that could guarantee positive results, and my immune system isn’t up to the task of experimenting with different chemo drugs until we find something that works.  Therefore, he feels surgery is the best option.

  Swisher wasted no time in outlining the plan he has in mind, and it involves both surgery and radiation.  Huh.  Wasn’t expecting radiation to be involved, seeing as how it’s never even been considered in the past.  Anyway, he’s going to start with an exploratory surgical procedure on the lymph node only, since it’s the more immediate concern between my two spots.  He’ll go in through the back, opening up the same incision he’s used for both my left lung surgeries.  From there, he’ll isolate the area of the lymph node, check it out, and decide if he thinks it can safely be removed.  He was upfront in saying there’s only a 50% chance he’ll be able to take it out. (Wow was that hard to hear–I think that was the point at which I started uncontrollably shaking)  If he can take some/most of it, there’s a good chance he may also need to take the upper lobe of my left lung along with it, and if there’s massive bleeding, he might even be forced to take the whole thing (though the chances of that are slim, thankfully).  However, if he gets a look in there and decides he can’t safely attempt to take any of it out, he’ll simply close me back up, and there the mass will stay.  He paused briefly in his explanation, long enough for Ang to ask what that would mean.  That’s when he said it…..”That means you’ll have something in there that’s essentially untreatable.” 

  Inside, I was screaming, and my inner dialogue was going a million miles a minute.  ‘No.  No, no, NO.  My ears must be deceiving me, I know I did not just hear those words.  I’m not ready to hear that, I just can’t handle it.  I feel fine, things were going fine, this was just a roadblock.  This CANNOT be it.’  On and on that inner voice went, but on the outside I just sat numb and continued listening while Ang mechanically rubbed her hand in circles on my back.

  No matter what happens during the procedure, after I’ve recovered from surgery, step two is to undergo radiation.  If the lymph node has to stay in, the success rate for the radiation is a dismal 30%.  If the mass can be removed, the chance for success with radiation goes up to 50-60%.  Still not great, but certainly better.  After completing radiation, I’ll undergo a second surgery to remove the tiny nodule in my right lung.  From there we wait until my body can handle more chemo or another treatment is discovered and becomes available.

  That’s the gist of it.  In five minutes time, we went from thinking, “Eh, it’s tricky, but no problem” to finding out the situation was FAR more severe than I (or Dr. Benjamin) knew, and that not only was surgery going to be extremely complicated, but that I was facing a situation where remission might never be possible. 

  I wish I could put into words how it felt, learning news like that.  It’s always been important to me to be transparently honest on here about the cancer experience, and I know that’s got to be a question on everyone’s mind.  Maybe once I can stop sobbing uncontrollably for more than a few minutes, I’ll be able to organize my jumbled thoughts and get them out on here.  Until then, I’m just existing in a state of numbness and trying to wrap my brain around it all.  I’m determined to find my way back to positivity.  I know I will, and it won’t take long, but it isn’t going to happen tonight.

  If, if, if…..lots of “if’s”.  I feel like I need a flow chart to outline all the possible scenarios, percentages and outcomes.  None of them look great, if I’m being brutally honest.  I can only hope the anatomy right around that lymph node is more favorable in person than on the scan.  Oof.

  So, Ang and I are here with not much to do for the next few days.  I’ll have an anesthesia consult and a pulmonary assessment sometime early next week, then surgery is scheduled for Thursday, August 4th.  We won’t know exact time until the day before.  Sammy is drastically altering the band rehearsal schedule at school for next week and planning to head down here this weekend.  Mom will fly in next Wednesday.  So many details to get worked out, but it’s okay, because things like that help distract me, and right now, distractions are good.

  Time for bed.  I just want today to be over.  I’ll be back when my brain decides to start processing things again.  Night all.

  -Steph

  • 12:51 am
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