Again with the effusion?

We're back in the office again, seeing Dr. Steven Kossman this time around since his old man Charles is on photo safari in Botswana. (I just gotta say I totally dig Chuck's choice of vacation spot, by the way.) Anyway, Phil is due to start another round of chemotherapy today but he's been feeling really crappy this week. His energy has been poor and he continues to have left sided chest discomfort and a weak cough.

A chest xray was done last week which showed a small infiltrate (a haziness) in his left lung but NOT an effusion so he was started on an antibiotic to treat a possible infection. So here we are and he still feels fairly rough around the edges though he's had no fever or sweats, no chills or other signs of worsening infection. According to Phil, this deal in his chest feels just like the other two effusions he's had prior to this, one on his right side and one on his left side. As of about a month ago, his PET/CT scans and bone marrow biopsy were really good so we are a bit confused as to what might be causing this again, if indeed it is another effusion.

His blood counts and lung field exams today were mostly normal. There was some dullness on the left but not enough to stop him from receiving his treatment. The plan was to get the chemotherapy this morning then go over to the hospital for an ultrasound of the lung and tap it if it is an effusion. Otherwise, it's full steam ahead. Keep on beating on this sucker with chemo until it's fully gone.

Phil's ultrasound showed he definitely had a large left-sided pleural effusion. The radiology techs drained off more than 1 liter of fluid and Phil is much more comfortable. The fluid will be sent off again for all the usual studies, including ruling out further lymphoma involvement/advancement. It is a "paranoid" time per Phil. To be on the brink of the BMT and to have this spring up again is very frustrating and disheartening. Especially because it was the tap of his left lung that came back positive for recurrence before. Phil said today that he realizes this is a bit like a "wrestling match" and that no sooner does he get one thing pinned down then he's got another situation popping up somewhere else. There is always a new opponent it seems.

He is scheduled to fly to Atlanta late next week to spend time with his best friends and his hopeful prayer is that he is well enough to do that. Of course, wisdom and discernment about the best choice for his ultimate health is our ultimate prayer request. With the BMT option on the horizon, each decision from here on out bears very thoughtful scrutiny.

Phil is very physically tired from the successive and cumulative toll of 3 (and now a 4th round) of chemotherapy. He is run down emotionally and psychologically after more than a year of chemo/surgery and complications and now, from confronting the daunting list of things that will be required of him for the BMT. Your faithfulness, your cards, wall posts, emails and prayers are keeping us all afloat as we walk through this most difficult of journeys. We continue to rely on you more than you will adequately know. You, the unseen team we look to for strength and determination when we feel depleted. I personally have felt revitalized this week and covet the prayers said in my stead. Thanks Team~

With and Without You

Phil is "treading water" as Dr. Kossman likes to say but a better description might be to say he's "climbing the walls".  We both are in our own way - he's in his uncomfortable hospital bed, just biding his time waiting to be hale enough to undergo more testing and have an immune system capable of sustaining him at home.  I'm at home and the hospital, caught between two masters, caring for him and the kids and trying to balance both while not losing myself, my sanity or my temper.  


Parenthood is definitely not for sissies and single parenting, well, my hat goes off to you folks and then some.  Add in a routine migraine, any one of a myriad of emotions from the kids, some generalized grief and don't forget, we've got 2 weeks off for Spring Break!  I am actually really looking forward to the downtime with the kids, it's just that close quarters and free, unstructured time can get dicey.  I've got lot's of plans and ideas and I'm praying and working that the family and visitors coming this way next week will make it work out.


Meanwhile, back to our main saga.  Phil continues to receive RBCs and platelets, ride the roller coaster of GI complaints and wait ever so patiently for his bone marrow to begin manufacturing WBCs again.  Each day seems to creep by with a mini-adventure of some sort.  We've had some nice visits with friends, the kids have had extended visits to watch movies, do homework at the corner office table and do their most favorite thing of all -- get junk food out of the vending machine down by the staff lounge.  Phil is going on almost 2 weeks in the hospital this time around (having barely 36 hours at home between admissions) so his highlight with the kids is hearing about the triumphs and tragedies that make up their days.  Recently Bennett ate a Sour Cream and Onion flavored cricket and some meal worms at the San Diego Zoo and Olivia has 2 new loose teeth and has graduated to reading to the H level readers.  And it was this week that Bennett verbalized his deepest fears and hurts to us.  So painful as parents and yet, we are so thankful he did.


In more deep and painful ways than I can express it's a crucible to parent and be a wife and lead a family while a husband has cancer.  No one has it easy.  It is hard and painful to be 9 years old and able to comprehend and imagine what it could be like to have your dad die.  It is hard and sad to be 6 years old and have a mommy who is often too tired to play like she used to.  And it is hardest of all to be Phil, sitting in the hospital day after day after day after day just waiting for his body to make WBCs so he can get on with the next thing, knowing it's not the last thing.  And knowing that we're here feeling all this, for him, with him, without him.

Chill Pill

With all the prescriptions and medications Phil has been given, this may be the hardest pill he's had to swallow.  Waiting.   


He's been asked to wait at least 3 weeks to start his next round of chemotherapy.  He was supposed to start today in fact, but his sinuses just aren't ready for this regimen's portion of chemo, methotrexate and ARA-C.  Dr. Mansfield examined Phil last week and found too much swelling and infectious residue to sign off on treatment at this point and asked him and Dr. Kossman to wait at least 2 weeks.  The 3 week point was chosen because Mansfield won't be back in town until then and we all want him around in case anything goes south during treatment.  Having been around this block a few times we've learned it's a good thing to have the best people in place, just in case.  So, 3 weeks it will be.


Now you might think that Phil would be singularly happy about having 3 weeks to take a break and have a breather.  I would have thought so too.  To be perfectly transparent, since it means that I get a break as well, I am totally fine with it, but he's not thrilled.  But before I go questioning him I have to remember that I'm not the one with cancer in my body - in my bones and in my blood.  He's got the ever present reminder within him and despite his fatigue and the rigors, wounds and inconveniences of battle, most days he just wants to get on with it and see it to the finish.  His lives a dichotomous life right now, desperately needing to rest and replenish in order to live, yet wanting to take the fight to the disease (within himself) which knows no rest.  


So, is there really ever any rest for him?  For his mind or his spirit?  Maybe for the body there is when he's laid up or recovering from surgery.  But what about his mind?  What happens when one let's up in there, or in one's spirit?  I don't really know, having never fought for my life.  I do know that Phil, despite recovering a herculean amount of strength and stamina, is still often profoundly fatigued and the reason isn't always clear.


Today we have his brother Jamie and family coming to visit and "the buddy's" from high school, Brad Bruckman, Tim Spence, Jim Kramer and Jon McCauley are coming in another week.  God doesn't makes mistakes and since His timing is perfect I can't wait to see what will happen for Phil during this time.  It makes perfect sense for him to relax and really enjoy this time with them.  The sinuses will heal, I don't have any concerns about that.  But we all need a breather, all of us.  Whether we know how to handle it or whether we welcome it, it's here.  I for one have so much to do and get caught up on that having friends and family here could streamline that.  I'm looking forward to fresh faces around, to stories and laughter.  I can't wait for the inevitable falling in love that my kids do with Dad's friends and vice-versa.   And I really look forward to Phil forgetting for a while that he's sick.  That's what this waiting could be all about and that would be just fine.

Hurry Up and Wait

It's getting harder for me to find ways to share what seems like the same old information.  To make our lives seem more interesting to read about than they probably are.  As I sit here preparing to give you the current run down from our visit to Dr's. Mayer and Mansfield I'm putting myself in your shoes and thinking about what it must be like to check the blog and read the latest update on Phil and our family.  Do our lives sound as mundane to you as they feel to us?  Are you getting as antsy to move on with treatment as Phil is?  Are you waiting for a new story line - ready to hear more than "keep on taking the Ambisone, schedule another MRI in 2 weeks, and yes, no more chemotherapy for the time being"?  Well, join the exclusive club known as "hurry up and wait".


This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low.  This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily.  Mucor, you may recall, needs the iron to replicate.  Exjade robs the the Mucor of iron.  This is just one more way to combat the Mucor and hopefully send it packing.  Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.


This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things".  Not for the pushovers of the world is ENT.  I know why I called him a Zen Master.  He is one smooth operator.  Anyway... Overall, Phil looks great to him and he saw no signs of Mucor.  He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue).  He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.


Until then, it's start the Exjade and see what that does over the next month or so.  When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile".  So, there you have it.  Awhile, folks.   Just another way of saying "hurry up and wait" which of course is easier some days than others.  Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.