Tuesday, October 26, 2010

You Look Mahvelous

All day yesterday I struggled with a killer migraine.  And all day yesterday Phil came through for me in ways I couldn't have imagined he'd be able to come through for me even a week ago.  He has become more and more independent and engaged every day.  Perhaps the best thing he did for me was put the kids to bed.  You know that feeling, at the end of a long day when you're tired, they're tired and all you want is for them to go to bed so you can go to bed?  He did that, all by himself.  People, that is HUGE.  Bennett alone is a whirling-dervish at bedtime and Olivia saves her histrionics for then as well so to get the two of them to bed with jammies, brushing teeth, stories, finding doggo (the essential nighttime security blanket) songs and a prayer, well-- kuddos my dear husband, kuddos.  No wonder you are still asleep as I write this at 10:15 a.m. the next morning : ).  

We had our follow visit to review the MRI with Ghosh yesterday.  As we drove there I asked Phil about his emotional life.  As you know, I've been trying to discern what goes on inside that head (and heart) of his.  I asked him how he was feeling and commented that he didn't seem to "go deep" anymore.  He agreed.  I asked him why he thought that was.  Silence.  I thought about asking him again.  More silence.  I thought about rephrasing the question.  More silence.  Now it had been at least a minute.  Maybe he hadn't heard me, maybe he'd spaced out.  Right when I was about to say something because I was running low on perspective, he spoke. He said he was searching for the right word to express what he wanted to say.  

Partly, to "go deep" was exhausting and honestly, he was tired all the time.  But it was more than that.  He just couldn't get there.  And today, he couldn't find the word he wanted to use to explain why he couldn't go there.  It was eluding him and it took too much energy to find it.  Well I guess that really sort of says it all, doesn't it?  When one can't find the words to say what one wants to say in one's thinking mind, how is one going to say it out loud?  That has got to be a monumental challenge and frustration and given everything else he's got going on, not a priority.  I'm beginning to understand. Duh Sally. 

Dr. Ghosh was quick to pull up the MRI on his computer and show us his findings.  (It's funny, I know Phil is feeling better because while we were waiting he tried to take a peek at his MRI on the computer.  I mean they were right there and he could just double click on them to blow them up.  He does after all know how to read an MRI.  So what if they're usually knee and shoulder MRI's?).  Anyway, we were shown the results and they were as we had been told. We could see the edema and the slight shift of the brain.  But Dr. Ghosh barely mentioned it.  He was all agog about how fantastic Phil looked and sounded.  He again called him an outlier and was ecstatic to see him doing so well.  He didn't want to do anything else with his treatment plan.  Whatever Phil was doing he wanted him to keep doing because he was looking so mahvelous.  In point of fact, he gave him a three week leash so to speak: no follow up until a repeat MRI in three weeks.  Yeah baby!  Less OV's (office visits)!!  

Ghosh also commented that Phil's mentation (mental function, activity of the mind) looked good. When asked he said that the blunted affect we'd been experiencing was all due to the surgery and the bi-frontal process going on from the edema.  He felt it would resolve once the edema and the hematoma from the surgery resolved and that it would be a temporary situation.  What great news!  Those of us in daily relationship have reason to hope that we will have our deep thoughts with Phil Conrad once again.  In all seriousness, we can hope and pray for a rich interior life for Phil once again, something he has always loved and lived for.  Praise God for the skilled hands of Dr. Ghosh and the serious grit and determination of Phil Conrad.

Monday, October 25, 2010

Sins of Omission

Funny how time flies when you put your head down and try to catch up on a fraction of what you've neglected for the last few weeks. Wait, we're friends by now, so I'll be honest and call a spade a spade - some of these things have been neglected since I moved into The Big House and they still didn't get addressed this weekend, but that's a matter unto itself and NOT the point of this post.  The point of this post is to inform you that I may have dropped the ball on letting you know what happened a few days ago on the follow up phone call with Dr. Mayer. 

Life just got to rolling along what with Brad Bruckman and Tim Spence coming to town, a trip to Oma's Pumpkin Patch and the much anticipated Fuerte Elementary School Trick or Treat Carnival this weekend so I guess I just filed the information and went along my merry way.  You'll have to excuse me if I occasionally forget that there are a hundred or more of you out there checking in and wondering how Phil is doing.

As I mentioned prior, since I live with the guy and we aren't in crisis mode anymore I am attempting to use more of my time to catch up on the multitude of things that have been cast by the wayside.  I use the word attempting purposefully because the things that need to get done are, in no particular order: having the cars smog checked and registered, making 3 dentists visits for the kids and I, finding an ophthalmologist for Olivia, an orthodontist for Bennett, and last but certainly not least maintaining my PA certification by completing around 30 more hours of continuing medical education by the end of December. Deep breath.   

What I did actually accomplish however as I mindlessly neglected the lot of you were 4 loads of laundry, vacuuming my entire side of the house and emptying all my trash cans, paying all our bills and getting rid of the 20 or so damned stuffed animals that we moved down here even though I KNEW we'd just end up getting rid of them once we got settled.  Not the "blow for freedom" (as my dad would say) I was hoping for.  We did make it to the pumpkin patch and the Trick or Treat Carnival and Brad and Tim took Phil out for an actual night on the town (read, dinner).  The rest I am sorry to say, fell by the wayside once again.  Ah well, hope springs eternal.

To be fair, the phone call was somewhat anti-climactic, perhaps that's why I omitted it.  Dr. Mayer did in fact increase Phil's Ambisome to five days a week from three so he is now having M-F doses with weekends off.  We'll start that today and follow the creatinine levels closely to see how his kidneys tolerate the daily dosing.  If all goes well then the iron-binding agent Exjade will be added back in to rob the Mucor of iron.  That decision will be made later this week or next.

In looking at an MRI, it's a bit like a Rorschach test.  While the overall technical reading may be the same, show it to several physicians and you'll get three slightly different impressions, depending on their specialty. Technically, the edema in the L frontal area is compressing the ventricle on that side and causing a slight L to R shift of the brain.  Today, we'll be hearing what Ghosh has to say about the edema and what his impressions are as the neurosurgeon on the case.  He may add Mannitol, which is used clinically until a more definitive treatment can be applied.  Because Phil cannot have any steroids for the edema, this may be our next step.  

Other than that, perhaps watchful waiting will be employed?  Perhaps further surgery to insert a catheter to reduce the edema? Like I said, we'll know more soon.  And when we know more, you'll know more.  Obviously, my to do list isn't going anywhere.  

Thursday, October 21, 2010

Brain MRI

Thanks to all of you who texted and called throughout the day today to share words of encouragement either for Phil's MRI this morning or for the struggles we've had with our ailing kiddos.  Our day started out well with BOTH kids heading off to school happy and seemingly healthy, or at the least, afebrile!  It always amazes me how restorative eight hours of uninterrupted sleep can be.  But who am I kidding?  In point of fact it was only six hours but anything more than four feels fantastic!  I can't rightly remember the last time I had eight hours of sleep and that my friends is a crying shame.

After some serious head bobbing on my part during Phil's 8:30 a.m. MRI we saw Dr. Kossman for a follow up visit and he too had nothing but good things to say.  The creatinine level has stabilized along with the potassium and magnesium levels.  Phil is slowly putting on weight at the rate of a lb or so each week.  He has a stable anemia which does not need to be treated at this time and is gathering energy day by day.  Dr. Kossman is now comfortable with seeing him every two weeks in follow up.  Praise Jesus for one less appointment per week!

We were counting ourselves lucky with a full day ahead of us to lounge and catch Zzzz's until my phone rang on the way home to pick up my eldest, Bennett, from school.  Seems he'd been sent back to school too soon and was still coughing a bit too much for their liking.  Oh well, the best laid plans...  So, we picked him up and headed home to wait for the MRI results.  It was a long afternoon of teaching our dear boy that staying home from school isn't supposed to be "fun".  Did I mention it was a long afternoon?  And that it wasn't any fun?  For anyone?  I could digress here but I shan't.

We eventually got the call report around dinnertime from Dr Kossman and in his typical manner he set me up with what to expect from the phone call with the following, "there are some good things and there are some things we're going to have to make some decisions about."  

The good news is that the area around the L eye and the frontal lobe abscess that was removed is smaller and is now just a hematoma (blood clot).  It does not represent any new process or danger.  The more important area, the basal ganglia, just inferior to that area, is slightly smaller also which means the Ambisone has been effective in that area so far.  Exactly what we were hoping to hear. 

However, there is more edema (swelling) or inflammation around these two areas as well and they have merged together into one area of edema now, more than in the past.  Edema always shows up after brain surgery and brain infection and is to be expected.  The normal course of action would be to give a typical patient a course of dexamethasone (steroids) but this is completely contraindicated in Phil's case because of the risk of worsening the situation with the Mucor.  

Dr.'s  Mayer and Ghosh will be looking over the MRI tomorrow and confering on the next best steps.  It is possible they will recommend increasing the Ambisone to 5 days a week from 3 which is what Phil is doing now.  They may also add on the Exjade iron-binding agent which had been on hold to protect his kidney function.  Remember if you will that Mucor needs iron to reproduce and the iron-binder will deplete Phil's iron stores and rob the Mucor of iron, thus interrupting it's ability to reproduce.  Lastly, Ghosh could surgically insert a small catheter into the area of edema if he feels that the fluid is going to continue to accumulate and cause further brain shifting.  There is a slight left to right shift beginning now that will need to be monitored.  Ghosh has been very clear about his reticence to perform any further surgery deep in the brain because of the serious risks of paralysis associated with it.  Tomorrow's update will determine another important step in Phil's battle, yet again.

Phil is typically taking all this in stride although he's not too excited about the prospect of having IV antibiotics 5 days a week.  He is understandably getting tired of being hooked up all the time.  He knows what his options are and is still willing to take his medicine so to speak but it is definitely getting old.  I know how difficult it is to be on this roller coaster and I'm not the sick one.  I need to remember that when I want to pull my hair out - at least I still have my hair!

Tuesday, October 19, 2010

Super Star

It's been a week of follow up visits and Phil has received rave reviews.  As I mentioned earlier, he was called an "outlier" by Dr. Ghosh.  When he saw Dr. Kossman earlier this week he had gained a few pounds, was more energetic than he'd been for over a month and was able to make a few jokes with the office staff like in days of old.  Everyone remarked at how far he'd come since being discharged from the hospital.  He had surpassed all expectations.

We also saw Dr. Mayer who has always been the most serious of the bunch.  He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone.  He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.

Today we followed up with Dr. Mansfield, his ENT oncology surgeon.  After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well.  He called him a "Super Star".  He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim.  Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope.  He said he was genuinely excited and not just trying to give him a pep talk.

Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years.  That may not sound like a lot but actually, there is no one in the county with more experience.  And every one of his patients have survived.  Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived.  His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully.  He is a case of one with Mucor on one side of the aisle and lymphoma on the other.  There are no studies guiding his physicians on best practices and outcomes.

Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video.  Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.

For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next.  Dr. Mansfield put it very plainly and clearly.  We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo.  If we put Phil back on chemo too soon and the Mucor comes back it would be his demise.  So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.

Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.

Monday, October 18, 2010

Phil 4:13

What is life but a series of emotions?  I mean that is one way to look at life and I guess coming from a woman it's not a stretch to see it that way. That's how I've experienced my world over the last 40-some years, since as far back as I can remember anyway.  Whether they be "good" or "negative" emotions I can remember always being aware of them and always wanting to make sense of them.  I also remember being very aware of other people's feelings and emotions, often even when they weren't aware of them themselves.

As the drama and intensity of the last few weeks has subsided I find myself in a strange place emotionally.  I am frankly exhausted; physically because of all the care taking and appointments, yes.  And emotionally because there is room now to collapse and feel what there was no time for while the fires burned and the hurricane blew.  But also because the kids and I are no longer being pumped up by a constant stream of adrenaline.  You know that let down feeling that comes after you've swerved to miss a traffic accident when your heart finally stops racing, your breathing finally slows down, you feel shaky all over and you realize you've dodged a bullet?   That's where we are now.  We've dodged a big bullet and for now, we're in the eye of the storm where the birds are flying and the sun is shining.

On to the emotional life I've always had.  Lately I'm feeling pretty much nothing.  These days I'm all about taking care of business and getting things done.  Fortunatley there is plenty to take care of and get done.  I know it is my way of keeping it all together and is probably a defense mechanism of sorts yet it is eerie for me.  On any given day prior to this whole deal, if you'd have asked me how I was doing, I'd have told you.  In detail.  And not just a "fine, how are you?"  Anyone who knows me knows I give the real answer.  I take pride in knowing how I am doing and in naming it and looking at it and turning it over and examining it, so much so that it is actually a problem sometimes.  So for me to not be in touch with how I am doing is a bit surprising to some folks.  

Phil still isn't a big talker about his inner life so I have to make my best guesses about where "he is " on any given day.  That's also a big change.  He too tended to name his emotions and talk all about them so he/me/we are all in uncharted territory together.  The kids have their Dad home but he isn't the same guy.  They are dealing with enormous changes themselves from having just moved and losing everything familiar to having a Dad with cancer and major complications who can barely take care of himself.  Their emotions are huge and overwhelming - to them and for me.  And they've only got one functioning parent for all intents and purposes.  

SO, due to years and years of practice, I DO know how I am doing underneath it all, but I am focused on WHAT I am doing because to focus or talk about HOW I am doing would be my undoing.  I don't know HOW I am doing it but I AM doing it.  One day at a time, one hour at a time, one appointment at a time, one load of laundry at a time, one prayer at a time, one crisis at a time.  

Philippians 4:13   I can do all things through Christ who gives me strength.

Wednesday, October 13, 2010

Phil the Outlier

Judging from my last several posts, the grand and lengthy prosaic writings of mine were on hiatus.  Whether it from sheer fatigue or necessity (or both), my dispatches were nothing if not terse. I believe that quality reflected both my emotional reservoir and my mental function in general. Fear not, I have had a much needed pedicure and am good to go for awhile longer.    

Any-who!   Things at Chez Conrad are measurably improved.  I would say that 2 days ago Phil really turned a corner -- strangely enough when we finally started to administer the Ambisone he became more animated, got his bearings, started to eat more and became more intentional about living in just about every way. It has been an incremental gain and each day has provided a small reason for celebration. First it was Phil having eaten an entire hamburger for dinner. Next it was Phil getting up unsolicited to join my brother Stephen and I in the other room as we helped Bennett practice for a school presentation. Yesterday it was the fact that he only took one short nap all day. For the kids, it's that he's had the energy to read them stories and tuck them in at night. Last night he climbed up into Olivia's bunk bed! I tried hard not to have him see me spotting him but he made it up and down on his own.

Being his wife and caretaker and having been a PA for 8 years it's hard not to see all the things that need attending to. I guess having sat by his bedside for the last three weeks and filtering through all the dire predictions gave me a habit of doing that anyway. He's definitely got the weight issue hanging around and his magnesium is now low and being supplemented. His affect is still a bit flattened but the range of his personality is slowly widening. But hey, when I think of what he's been through in the last 8 weeks, I know I've got to chill-ax as they say and get some perspective.

Here's a little timeline:
Lymph node biopsy Aug 8th, 2010 - same day surgery
Diagnosis of T cell lymphocytic lymphoma on Aug 10th
Port a cath placement August 12th - same day surgery
1st chemotherapy treatment INPATIENT x 4 days Aug 17th - 20th
INPATIENT (thru ER) for spinal headache x 4 days Aug 22nd - 25th
2nd chemotherapy treatment INPATIENT x 4 days Sept 7th - 10th

Wednesday the 15th of Sept, his left eye begins to hurt. Over the next 24 hours severe left eye pain and dehydration develop and Phil is HOSPITALIZED again. Major work up ensues leading to eventual 3 week hospitalization with major sinus surgery, partial left frontal lobectomy and debridement and residual mucor mycosis infection.
INPATIENT Sept 16th - Oct 7th

He saw Dr. Ghosh today, the neurosurgeon, who told Phil he was an "outlier", someone who has defied the odds and beaten the predictions. When I look back at that timeline and see what he and we have been through in 8 short long weeks, I am nothing but amazed at his fortitude, tenacity and sheer determination. He's also had a stellar team of surgeons and infectious disease consultants working on his case and that's made a huge difference, no doubt. He's also had the prayers of the people.

I think I'll recommend that Dr. Ghosh read Malcolm Gladwell, author of "Outliers". I Googled him briefly as I wrote this and came across an interesting quote. In it he says, "My wish with Outliers is that it makes us understand how much of a group project success is. When outliers become outliers it is not just because of their own efforts. It's because of the contributions of lots of different people and lots of different circumstances— and that means that we, as a society, have more control about who succeeds—and how many of us succeed—than we think. That's an amazingly hopeful and uplifting idea."

Phil's success and that of our family through this trial is made bearable by your prayers, possible by our Savior and probable by the skillful hands and sharp minds of Kossman, Ghosh, Mansfield, and Mayer.

Sunday, October 10, 2010

Getting the Hang of It

The pump issues are slowly getting better and we've been successfully hydrating Phil for a few days now. It's taken several attempts but we finally got the Ambisone going this morning though we're behind a day or so on that schedule. As the hassles multiplied I did my best to focus on the grand scheme of things as much as possible but 2 solid days of dealing with pump failures and incompatibilities pushed me right up to my limit. Sprinkle in a little sleep deprivation, PMS and fragile nerves and well, if I weren't so wiped out I might have hurt someone.

Tonight is feeling a tad bit more normal as evidenced by the young boys watching Ironman 2 in the other room and Olivia giving me a much needed "make over" in our half of the house. Olivia and I will round out our night with a chick flick to keep things in balance. A few moments of normal feel pretty good.

Pumps, meds and hassles aside, there are also new things to contend with. Phil's appetite is poor and I am concerned for his weight. If he loses much more, decisions will need to be made about supplementing him. This week's appointments will be crucial to our trajectory.

Saturday, October 9, 2010

At Home

Absolutely consumed with details, besot with IV pump failures and seemingly never ending days and just trying to keep up. My world is very small.

Thursday, October 7, 2010

Daddio is in the House

Phil, my main man is home tonight and sleeping soundly in his own bed after eating most of a pulled pork sandwich, carrots and dip, and a fresh fruit salad of strawberries, blueberries, grapes and pineapple. That's more than he's eaten in one sitting in days!

We've got our work cut out for us in the days ahead as our family takes on the bulk of his nursing care and he begins his home IV therapy. What with follow up visits with his various physicians and continual MRI monitoring of his brain and eye processes we'll be all about town! His kidney function is still a bit high so he's backing off to every other day Ambisome antifungal treatment with labs being drawn every other day to follow his progress. The iron chelation therapy will be held for now because it carries a risk of renal failure. It can be added in again later as the kidneys hopefully stabilize. And I believe I mentioned that the HBO (hyperbaric oxygen)therapy has been denied so is being addressed via other methods.

Tomorrow is Mr. B's 9th birthday and I am so happy for him that Dad is home for the party. I remember it like it was yesterday when I told Phil we were having a boy. He literally danced a jig in our Poulsbo, WA kitchen! October became a busy time for us with the addition of our kids birthdays and I've absolutely loved sharing it with them.

This year, it's already been a birthday month with wishes we'll never forget making and memories we'll keep forever. Thank you God that he's home.

Wednesday, October 6, 2010

Homecoming III

Hopefully this will the last installment for today. The ID physician covering for Dr. Mayer is Dr. Butero and he has just returned to our room from reviewing Phil's chart and finishing his busy afternoon clinic. He feels that the decision to keep Phil here overnight can be looked at as a philosophical one, or as a matter of medical practice management style. In this instance being very cautious has it's benefits and will hopefully keep Phil out of the hospital longer.

SO, having said all that, here's what he's recommended: Phil's antifungal dose will be held tonight. He will have his creatinine level rechecked in the morning and adjustments to his medication dosing will be made accordingly. He will be sent home in the morning with orders for a few hours of IV saline per day to ensure adequate fluid intake. He will have VERY close monitoring of his kidney function as well as a multitude of other labs every other day.
Last but certainly not least, he will be following up in leapfrog fashion weekly with each of his new BFFs, Dr. Mayer (infectious disease), Dr. Ghosh (neurosurgery), and Dr. Kossman (oncology). If we get that HBO covered he'll be going there as well. Quite the social butterfly my man will be. Oh, and he's got a nine year old's birthday party to go to on Friday :)

Homecoming II

There were obviously some details missing from yesterday's blog. The missing pieces I'll be going over today just didn't belong in there with the sentimental journey I chose to go on and some days, I've honestly had it up to here with the details. Besides that, there are so many moving parts between taking care of Phil, seeing to my children's well-being, connecting with visiting friends, being available for consults, dealing with insurance, praying, etc., that I needed to keep it short and literally, sweet. Oh yes, and there is always remembering to eat, shower, breathe and sleep. Thank God for Trenna and Rene who are always willing to do my laundry, watch my kids and have a meal ready for me when I eventually get home.

I had been trying for the past three days to get to this blog but circumstances (which I've learned so well, are always out of my control) had prevented me again and again from writing it until yesterday. Now on to the details of his discharge as I know them.

The plan is to go home on IV Ambisome once a day and to have daily blood draws to watch the kidney function, electrolytes and blood counts. In addition Phil has been started on an iron binding medication to make him slightly iron-deficient. The Mucor needs iron to grow so by robbing it of iron, it weakens it. Also, Mucor hates an oxygen rich environment so HBO (hyperbaric oxygen) treatments have been prescribed. The hospital that Phil works at, Sharp Grossmont, has a hyperbaric oxygen chamber in which Phil will sit for an hour or two, three times a week for a month. The chamber looks like a small submarine and is filled with pressurized 100% oxygen. The point is to expose the Mucor to an environment which it abhors to weaken it from that angle as well. So far, the insurance company has approved the first two of these treatments and we are working on the HBO. It is not the most crucial of the three so we will continue to duke it out with the insurance as we move ahead.

RESET: As I am sitting here, the covering ID physician has come in and told us that Phil's creatinine, a measure of kidney function, has dramatically risen since yesterday. This is despite backing down on the Ambisome and giving him 2.4 liters of IV fluids a day. He is very concerned about sending Phil home on oral hydration and wants to back him down to every other day Ambizone. However this raises real concerns about the efficacy of the Ambizone against the Mucor. He will be advising Dr. Kossman that Phil will remain here another day to see if this lab result is an aberration and to make sure he is really ready to go home. In our experience, rarely has one day meant just one more day.

When I asks Phil how he feels and what he thinks, he says he'll do what he has to and he'll keep taking his lumps. "What can you do to change it?". And although he seems so chill about it, I know he is really disappointed, as we all are. He was so close!!

This development carries so many implications for the future. Yet, in keeping with my strategy of taking one day at a time, and sometimes 12 hours at a time, I'll be focusing on what is right in front of us at this moment and will keep you informed as I know more. Please be patient with me as I mentioned there are many moving parts in this fast-paced drama. I WILL be in touch.

As ever, your friend and companion on Phil's heroic journey--

Tuesday, October 5, 2010


Today, circurmstances dictated that I bring my son Bennett along with me to the hospital to help him finish up homework and get a handle on things.  He usually isn't that excited to go visit Dad and who can blame him?  His ninth birthday is this Friday which is to say that he exhibits all the age-appropriate behaviors you'd expect from a boy "his age".   He finds the hospital strange smelling, boring, and frankly, it gets in the way of whatever it is he'd rather be doing.  I've had to learn that none of this really has anything to do with his feelings for Daddio, rather it has everything to do with the self-centered little phase of life he's in.  

This was a busy afternoon for us because Phil is finally due to go HOME tomorrow.  He has received the all clear and there were people coming and going into his room quite often to give me instructions, prescriptions, go over insurance issues, round on him, etc.  Bennett was transfixed and very popular.  You'd have thought he was the patient for how much attention he got.  Those of you who know him are hardly surprised by this.  It was actually quite sweet to see his interest in what was going on.  One physician makes a point of spending time during each visit to inquire regarding Phil's mental battle and he paid particular attention to the questions Bennett was asking, telling Phil what a great family he had around him even at that moment.

Finally it quieted down and for the first time in a long time, it was just the three of us together.  We were way beyond the usual point when I'd be hearing the complaints of boredom and the wail for the vending machine.  When I told Bennett I was going to snuggle with Dad for awhile and then we'd go home he came to the bed and started asking Phil about a hundred things at once.  From his IV meds to the staples in his head wound, Bennett left no question unasked.  He made comments about what he observed and listened as Phil talked about his experience over the last 3 weeks.  It was a beautiful communion between father and son that was healing medicine for both of them, and for me.  Bennett talked about the IV pole being Phil's staff of wisdom, his nourishment and life supply, and said "I'm not kidding Dad".  No son, we know you aren't kidding and we were listening and hearing every word you were saying.

So, tomorrow Daddio comes home.  He's been in the hospital fighting for his life for almost three weeks.  He is damn tired but he has beaten some ridiculous odds and lived to tell the tale.  He continues to face ridiculous odds.  And he continues to fight.  He needs to breathe fresh air.  He needs fresh food.  He needs his family and his home.  He needs a break.  And he needs continued prayer, love and support from his Team!  You have no idea how much you mean to him.  Your cards, letters, and texts keep him motivated and strong.  They keep us both encouraged when the days are long and the miles are hard.

Moving on to the next chapter in faith that God is good all the time.

Friday, October 1, 2010

Man on Wire

There's this little journal I carry around with me everywhere I go. Or at least I did. Originally I recorded all the overwhelming information that Dr. Kossman gave us at each and every visit- from the initial diagnosis, to the details of the chemotherapy on through to each hospitalization and follow up visit. Over time it has evolved to include consultations, phone calls, CT and MRI results, lab reports and what read like nursing notes regarding his intake/output, blood sugars, and assorted minutiae. Anything and everything I might need to remember or refer to has been written down "for the record".

I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.

Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.

For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.

This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.

Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.

Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.

The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.