Welcome to My World

SURGEON GENERAL'S WARNING: Reading the following post may give you the distinct impression that I'm throwing myself a pity party.


It's about time for one though, isn't it, really?  I rarely look back and read what I've written but boy when I do, I think to myself, who writes this crap?  Well, actually that's just on my bad days.  I mean come on now, aren't we all our own worst critics?  In my attempts to keep you abreast of what's going on here at Chez Conrad I feel it's my duty to keep it real while attempting to keep The Blog I Don't Write from creeping in too much.  Hence the always upbeat and what appears to me to be slightly milk toast/smarmy endings I default to in order not to loose my sanity and my ability to fight on yet one more day.  Can I get a witness!!


Let me interrupt myself here before I get too far into my soliloquy and say that this blog comes to you this morning from the tail end of 3-4 days of contending with yet another migraine (#4729 I believe, but who's counting) and at least that many days of piss-poor sleep quality.  Considering that migraines are seizure variants and mess with you something fierce -- this isn't likely to be my garden variety post.  Lo siento, mea culpa, one thousand apologies and all that and hey, just press on and try to keep up. 


Last Sunday my pastor gave a sermon about being real with people and letting them in to your story etc.  I thought of this blog and all the accolades I get from folks about how great it is to hear about our story yadda yadda.  But I felt convicted all the same because there IS The Blog I Don't Write which is something I constantly struggle with.  What you'd find in that blog are all the personal struggles and agonies that I save for my most intimate of confidantes and sometimes, not even for them.  But in between The Blog I Don't Write and Conrad Family Chronicles to date there are things to write about this cancer journey that can't be tied up with a pep rally ending.  When I am in the throes of a migraine-sleep-deprived state, those are the things that are unfortunately at the forefront of my altered negativistic mind.


For instance, this is our medicine cabinet.  Correction, this is Phil's medicine cabinet.
  

Aside from the Lysol, Kotex, and maybe, just maybe, the Phillips Milk of Magnesia, I would wager there isn't anything in here you'd find in your cabinet or under your sink.  Don't even get me started on how many Ben Franklin's we've got tied up in here.  A visiting friend told us we could make some serious cash on the side with our pain killer stash.  Might have to look into that if things really get tight...  Opening the medicine cabinet, which is located ever so inconveniently over the toilet is inviting disaster.  Not only could anything and everything fall into the commode, but the same genius who put the meds over the toilet saw fit to stack the towels above the medicines so taking a shower is also always dicey.


And this is how Phil spends quite a lot of time when he is recovering from chemotherapy or surgery - sleeping, resting, dozing, shutting out the world, trying to find his happy place, generally feeling like crap.

Notice our beautiful home decor in the background.  Those beautiful red vases?  You too can get your own at any hospital or medical supply store.  I can honestly say they will give your abode that "home health" look you've always been wanting.  We just can't get enough.  In fact we've got them in the bathroom too!  It's every woman's dream, let me tell you.  Oh, and the IV pole in the background?  When not in use it doubles as a hanger in the closet - functional and beautiful.  Whoot Whoot!


Just a few words on the subject of sleep.  If Phil doesn't sleep then the bottom falls out of everything.  He doesn't eat well, he doesn't have energy to heal, he just doesn't function.    Well, if Sally doesn't sleep, she gets cranky, migrainous and down right hurts all over because she is getting O-L-D-E-R and she hasn't exercised regularly in over 7 months.  But, things being what they are, tough shinola.  Sleep is the cornerstone.  Actually that's true for all of us but when you've got cancer then your sleep trumps everyone else's.  Them's the beans.


Case in point, (and here comes the pity party) last night after going to bed I woke up at midnight because my shoulders were clunking every time I rolled over.  Seems the old gray mare just ain't what she used to be.  Dammit.  By 2:30 a.m. I was sweltering from the heat running at 70 degrees despite being turned down to 60.  Got up to turn that off.  Just after dozing off again I was reawakened by Phil's snoring which, despite having extensive sinus surgery, has become more pronounced than ever.  Unfortunately, there would be no poking him in the ribs to roll over.  He can't sleep on his left side or he'll get headaches and numbness from the surgery so I've got to take it or go sleep with the kids.  There are just some things that make no sense and that is one of them.  I grit my teeth and did my best.  I fell back to sleep and after 2 hours guess what?  My son needed help to go back to sleep after a nightmare.  It was now 4:30 a.m., still dark and there was no waking Phil up to deal with it because, oh yeah - he took sleeping meds and there was no way he'd wake up if I tried!!  


The Emperor of Maladies describes cancer as "malignant growth and normal growth entwined", and "the most significant scientific challenge of our society".  That's exactly my world, the malignant entwined with the normal, the bad threatening every day to take over more and more of the good.  Seems every time I turn around there is some new way that cancer has found to infiltrate my little corner of life here.  Cancer has given me an opportunity for growth and reflection and to see things from a new perspective yes, but I'm just about all full up thanks.  


Like cancer itself, my good days and bad days are entwined and I experience progress and set backs alike.  The most significant challenge to society has landed on my doorstep and just getting by this week has proven difficult.

It is What It Is

We're home now, having been discharged on Wednesday after receiving Dr. Mansfield's blessing that Phil had been given a sufficient amount of IV antibiotics and Dr. Kossman felt his blood counts were returning to normal levels.  He left on oral antibiotics and a host of other medications to tame the sinus infection while his immune system comes back online and finally conquers it once and for all (knocking on wood would be appropriate right now if you are at all superstitious). 

Normally, coming home would mean a wonderful rest from the hustle and bustle of hospital life where someone or another is always coming into Phil's room to measure, administer, deliver, or clean something.  But no.  Cancer, being the tenacious SOB that it is, has continued to flex it's muscle and is alternately pissing Phil off or exhausting him with profound nausea.  In addition to these bouts he has also been taken to the mat with sleeplessness and a ferocious fatigue that compounds with each passing day.  There has truly been no rest for the weary.  And by weary I mean: chemotherapy for 4 days followed by 9 days of the bottom totally dropping out followed by admission for pancytopenia and sepsis including sinus surgery and a 6 day stay at "Club Med".   Makes most anything I am dealing with alongside of him much more tolerable.  Not easy, but tolerable.  

I just began reading The Emperor of all Maladies: a Biography of Cancer.  It is absolutely fascinating so far and I know I will be riveted by it.  I know because it is the story of a "relentless and insidious enemy" and because it is the story I am living every day.  You might wonder why I would choose to read such a book right now.  You might wonder if I'll find it too depressing, or too difficult to handle.  On the contrary.  In taking a hard look in the mirror of reality I find nothing more affirming than seeing things exactly as they are and leaning into them.  It is what it is - and yes it SUCKS!, yes it is a RIP OFF! of epic proportions that my husband, my children's father has this most aggressive and "relentless and insidious enemy", cancer.  But to pretend otherwise or to distance myself from this process or reality would be to deny Phil and myself the opportunity and privilege of growing in intimacy with each other, our children and with God in this most heinous, desperate and yet profound situation.


Through relationships with the doctors, my close friends and family and mostly with Phil and my kids I am reaping many harvests of joy amidst this trial.  I definitely have to keep my eyes open for them sometimes but they are there.  People and relationships are an endless wellspring of love and discovery.  And when all that cancer is serving up is nausea, hair loss, fatigue and sleeplessness, well, give me the wellspring, thank you very much!   (Take me to the river, drop me in the water...)  So even though there is suffering and that is what it is a lot of the time lately, that's OK.  We signed up for the package deal with each other, with our friendships, and with God.

People travel to wonder at the height of mountains, at the huge waves of the sea, at the long courses of rivers, at the vast compass of the ocean, at the circular motion of the stars; and they pass by themselves without wondering. -- St. Augustine

Exhaling

It's Monday now, the day after surgery and we are collectively exhaling after what has been a long 24 hours for Phil.  He did very well during his surgery although he did bleed quite a bit and needed additional platelets during the 3 hour procedure.  Dr. Mansfield found very infected ethmoid and sphenoid sinuses and had to remove a small portion of free floating bone deep inside the sinus area which appeared infected as well.  He called in Ghosh to observe because the bone removed was very close to the paracranial flap he had created during the previous surgery for mucor.  From the gross appearance in the OR it looks like a routine bacterial sinus infection.  So, after packing the sinus cavity with three different antibiotic laden products he sent Phil up to the ICU to recover and then back to his room on 3 South.  He recovered fairly quickly and was groggy but gave me the thumbs up when I came in to see him.


The rest of the morning was spent hanging out and helping him eat ice chips and come out of the heavy anesthesia.  Phil's brother David had come down for a few days and we spent the day napping, telling stories and engaging/encouraging Phil.  He did fine until just after I left to take my kids to dinner and get them to bed for the night.  Apparently the drainage from his surgery combined with his oral intake was too much for his stomach and he threw up all of it.  Poor guy.  He wasn't in any pain but according to David he was pissed off!  He hadn't eaten in 4 days and he was finally at his rock bottom.  He was sick and tired of feeling sick and tired (I can't believe it took this long) and just wanted to eat something and feel better.  Once things settled down he and David watched The Godfather and he finally fell asleep for the night.


This morning he is feeling better after receiving more platelets overnight and getting some much needed rest.  He ate some Jello and broth and started in on Gatorade and saltines.  A repeat MRI was done late morning to check the status of things post operatively and we got the report on his cultures - all are growing staph aureus, NO MUCOR.  So, we're dealing with a routine sinus infection and got to it very early.  We are so thankful and Phil was fist pumping.  Major relief around here.  He is so tired and fatigued and although I know he would have rallied for the mucor fight too, I am glad he doesn't have to.  


Now he can sleep, eat, take his medicine, build blood and hopefully go home in a few more days.  Never has a sinus infection been a more welcome diagnosis!

Just Trying to Keep Up

The results are coming in fast and furious and I am trying to keep you abreast of the results as best I can as I try to keep myself rested, fed and in contact with my kids.  Yesterday was a flurry of activity for Phil and literally, just as I posted my last update more tests began and more news came in.  That's just the way it is right now during this course in his care.


His MRI results came in during the afternoon and were the best yet concerning his brain.  The left frontal area shows scarring only and all traces of edema are gone, the right brain appears totally normal and the deep areas which were of most concern are almost normal.  Praise God!  


Lest we be too triumphal in our celebrating, there are new areas of concern in the sinuses, particularly in the sphenoid on the left side.  They show mucosal thickening and swelling although they don't look anything like before with the mucor infection.   Radiographically they look like routine sinusitis but both Dr.'s Mansfield and Kossman are quick to point out that there is no way to tell without a biopsy of the tissue.  Given Phil's history and his neutropenic sepsis they want to move quickly to determine what we are dealing with.  This means surgery - which started at 8:30 this morning (and is ongoing as I write).  Thankfully, the left orbit/eye area looks good on the MRI and probably represents inflammation only.  


A specialized CT scan was done late yesterday afternoon to prepare for surgery under stealth guidance with the Zen master Dr. Mansfield.  He came by and talked us through the procedure and exuded his usual calming influence.  Phil will receive platelets prior to and after surgery to minimize bleeding and the surgery should take anywhere from 1 to 3 hours depending on what is found.  The best case scenario is to go in and clean all the infection out, take biopsies and find the gross appearance to be consistent with routine bacterial sinusistis.  Worst case scenario finds the gross appearance to resemble what he saw before with the signs of mucor.  


Based on a quick look Dr. Mansfield took at the bedside last night he hopes to find the former.  He believes with the MRI showing regression of the mucor everywhere else it is unlikely to have it starting in a new location. But based on the course of this disease so far we will wait and see what the cultures tell us.  We know enough by now not to count our chickens until they hatch.  Along with Dr. Kossman and Dr. Mansfield we are being aggressive and getting results before we exhale.  We are praying and hopeful but we want those solid answers too so we know without a doubt what we are dealing with.  We've had enough surprises for a lifetime.  


Stay tuned....

Phil's Latest Update

This current hospitalization has shown me what a well-oiled machine my local crisis management team has become.  We're so accustomed to this roller coaster routine by now that each of us knows our role down pat.  My sister Terry called me early yesterday morning to say she'd come sit with Phil for the morning shift so I could go with Olivia to celebrate the "First 100 Days of School" and Valentine's Day.  Josh started cooking in the morning so we could have homemade manicotti for dinner, brought to us at the hospital I might add, so Phil didn't have to gag down the Turkey a la King they put in front of him.  He also picked up the kids from school and entertained them/developed their character (depending on how you look at it) for the rest of the afternoon and evening.  Josh even took care of our dog Nero's deep emotional needs and brought him over to hang out all day with their dogs.  


Today my parents joined in and took Bennett to his baseball game. Terry and Josh have Olivia and Nero and will resume with Bennett when my parents meet up with them later today.  Tomorrow will be more of the same with Jason and Becky and their dogs for entertainment and more dog camaraderie for Nero.  It's what families do, or should do that is, and I am very fortunate to have good family around me.  


Phil called me at 9 this morning and sounded well rested and strong of voice.  He had a decent sleep despite being bothered all night getting blood and antibiotics.  He was able to take meds to get back to sleep and after 3 units of blood he's singing a new song.  His L eye is a bit swollen and slightly red so his on-call infectious disease consultant ordered a STAT MRI to see what's going on with the eye, sinus and mucor situation.  Dr. Kossman was going to do this anyway so now it's in the pipeline.  He just returned from having that completed so we'll await that important piece of information.  Otherwise, his blood counts are coming up, including the WBCs, and he is slowly feeling better.


That's all for now so stay tuned and thank you for keeping us in your prayers.

Low Blood

I know I shouldn't be but I am.  Surprised, that is, by how quickly things can change.  I really should know better by now.


Yesterday, after several up and down days of feeling puny and struggling with nausea and vomiting, Phil woke up from a great night of sleep and felt like he had turned a corner.  He walked out of the bedroom smiling and was able to advance his diet from ice chips to tea, broth, and frozen yogurt all in the span of an afternoon.  For the first time in days his temp was stone cold normal and he had what resembled energy.  He helped me put in some laundry, did a bit of homework with the kids and even got Olivia's bike out of a predicament in the garage.  May not sound like much but for us this is a cause celebre.


He was well enough in fact that it felt safe for me to take Bennett to baseball practice for an hour or so and leave him by himself.  Once I got home however, the surprise factor showed up.  It was now after 7 p.m. and he hadn't eaten anything yet and had no appetite.  His stomach wasn't quite right either.  I took his temperature and low and behold, 101.5!  A call to our faithful Dr. Kossman bought us a fast track ticket to the ER.


At this point in Phil's chemo cycle he is on day 10, right at bottom out time.  The counts should be down at their lowest and he should be circling the drain so to speak.  A drastically low WBC count is just what Kossman had been trying to avoid with the Neulasta - the WBC booster he gave Phil just prior to discharge at the end of chemo.  The hope was that it would boost his production and help maintain some immune function.  However, once again Phil's system has responded to the chemotherapy perfectly - unfortunately.  


He is now pancytopenic ~ low across the board in terms of blood cell lines.  He is dangerously low on platelets, RBCs, and WBCs and because of the fever he is presumed septic (infected in his bloodstream) until proven otherwise.  His blood sugar is also very high secondary to the infectious process and needs to be in tight control lest the mucor take off again.  By now you won't be surprised either to hear that he was admitted for lots of supportive care.  Fortunately for him, he is in no pain and doesn't feel sick.  He just wants to sleep in his own bed.


As of last night when I finally left his room on 3 South he had received 2 antibiotics to cover him for infection, Neulasta for WBC production and was being prepped to receive platelets overnight.  This morning he will be transfused with 3 units of RBCs, take his Ambisome antifungal, continue the antibiotics and will be awaiting the preliminary results of blood cultures taken in the ER.  An MRI of the brain will likely happen in the next day or so.


Leaving Phil's room to go home last night was hard for me.  As always I felt torn between staying to support him, getting enough sleep to take care of myself, and being available to the kids today (the 100th day of school celebration and their Valentine's parties).  Phil saw the tears in my eyes and told me to go.  I know he would have liked me to stay but after all we've been through with this cancer he knows 1) the kids need their Mom 2) if I don't take care of myself then nobody will and 3) there is unfortunately, more of this to come.  Telling me to go home was a gift from my Iron Man.  My love for him grew last night and made us and our family stronger for dealing with this F-ing disease. 


    

Super Bowl Weekend ~ Conrad Style

Wouldn't you know it. Yesterday, the day before the "Big Game" (the one in which the Steelers beat the snot out of Green Bay while Phil waves his Terrible Towel and yells like a mad man) he woke up feeling horrible ~ nauseous and wrung out. By midday he had thrown up and by the evening he'd only put a glass of water, a grape Popsicle and a few ice chips into his system.  Despite world-class care and a lot of thought put into anticipating what might happen this time around, things just weren't going smoothly post-chemotherapy for Phil ~ again!  His fluid intake just wasn't gonna get it done so I had to pack him off to the ER for IV hydration and better anti-nausea meds.  


Alas, the great folks at Alvarado did an amazing job for us once again. Dr. Kai Zu was fantastic as our on-call doctor and gave us several excellent options to think through before we chose to head out to the ER.  As I've mentioned before, at this point in Phil's journey he is something of a celebrity and when Dr. Zu called he already knew the high points of Phil's case.  Until you've walked this long road you won't know what a gift that is.  I was spared from having to repeat Phil's entire medical history and because we are now both known entities, I didn't have to qualify my judgment of the situation from a medical perspective either.  This is truly priceless, especially when one's husband is teetering on the brink of literal existential nausea. 


Once in the ER we saw our nurse Joanne from 3 months ago when Phil came in with his horrendous spinal headache. We remembered one another and she reminded us with a wink that we weren't supposed to come back to her ER ever again. Oops.  She cared for both of us with the same warmth and commitment as before and we were made to feel as if were her most important patients of the night, made to feel like family.  When she told us of her desire to become a Nurse Practitioner, Phil, like usual, was quick to encourage and compliment her even though he continued to struggle with uncontrolled nausea as he did so.


Fortunately, his labs were all normal except for some dehydration and his problem was just that ~ being a quart low on fluids.  After 2L of normal saline and some Kytril for nausea he started to look better even though the nausea would hang on for the rest of the night.  We eventually made it home after only 4 hours there and were home in bed by 11:00 p.m.  That's got to be some kind of record for a complicated chemotherapy patient with dehydration, nausea and vomiting!  Good work Alvarado ER is all I got to say.  


Thanks to all of you who followed my posts on Facebook last night and were praying.  This morning finds Phil slowly gaining ground.  He started with ice chips and has progressed to Popsicles.  Later we've got Top Ramen on the bill of fare.  Good times ahead for this unforgettable Super Bowl Sunday I can assure you.  At this point, I would be remiss if I failed to mention that his first act this morning was to change into his Pittsburgh Steelers 2010 AFC National Champions T-Shirt.  There's plenty of fight left in the old boy yet!

Blessed Boredom

So far so good.  It's day 3 around here and the boredom has set in.  Actually it kinda set in early on day 1 but Phil is a champ and doesn't complain.  The chemotherapy has been uneventful and the hospital stay has been like going to visit old friends ~ everyone has commented on how great Phil looks, has gushed about his recovery and has been waiting for me to bring the kids around.


Phil's tolerated the adjustments in his regimen really well and other than feeling a little tired he's not had any real side effects of note.  He is not having any intrathecal chemo so he won't be getting any spinal taps (thank God) and won't have to contend with those potentially nasty sequelae.  Tomorrow he'll receive adriamycin (the "red devil") which will eventually make his hair fall out but until then things should be pretty benign.  


Dr. Kossman gave him the freedom to manage his diabetes which means he can give himself insulin, check his blood sugars and eat what he wants from the outside world in addition to the "gourmet" meals they offer him from Chez Cafeteria.  Just last night we dined on nephew Josh's homemade 1/2 margerite 1/2 goat cheese and arugula pizza.  Phil's got himself a stash of salt and pepper krinkle cut chips, too ; )!  Why is he getting such special privileges you ask?  Currently, he's sporting a Hgb A1C of 5.65 (a measure of his blood sugar control over the last few months) which is KICK-ASS!


So, when he isn't lying in bed eating pizza, basking in the glow of the admiring staff, taking naps or watching The Pacific on DVD,  he is dealing with some boredom.  But to a one, we are all thankful for the boredom this time around compared to the alternative and the roller coaster of last time. We know there is a big drop off coming when his energy will be depleted and the washout will hit.  Today is day 3 and that's coming on about day 8 or 9.  We're taking it a day at a time and this feels pretty nice.  Think we'll all just enjoy it for now.