Holy $@#& Batman!!

"Holy Shit" aren't exactly the words you want to hear your oncologist utter to you in reference to your recent MRI. However, at Phil's follow up visit to review his MRI with Dr. Kossman this week those were precisely the words we heard. In point of fact, Dr. Kossman was actually quoting the neuroradiologist who had read the images and was reporting to us their combined surprise at finding Phil's MRI so dramatically improved.

The edema and swelling is significantly resolved as is the left to right shift of the brain. In terms of the hematoma and residual activity in the left frontal lobe, it is about 50% improved and most significantly, the basal ganglia (deep brain area) is about 30% improved from the previous scan. I think it is fair and accurate to say that we go into these appointments now with no expectations, not knowing what we're going to hear. Well, this was definitely the unanticipated and better than either of us imagined. So, after such a long run of hard knocks we've all been enjoying doing a little coasting.

Phil continues to slowly gain weight and enjoys eating seconds and occasionally thirds without thinking twice. Even though he hasn't had much of a sweet tooth and he's tightly controlling his blood sugar, he's not been one to turn down ice cream. He'll continue to receive Procrit weekly to build up his RBCs and he's contemplating a more regular walking routine to build his stamina. Ultimately, as he recovers from surgery and all that's complicated his fight, he's making use of this partial remission to strengthen himself for what's to come.

He'll be re-staged for the lymphoma in about 3 weeks with a CT scan of the chest, abdomen and pelvis and we'll have a better understanding of where things stand with that then. Until then it's gratitude, savoring each day and living in the moment.

You Gotta Have Friends

This Monday morning finds us back in the waiting room of the imaging center as Phil has yet another MRI. I've lost count but he must be nearing number 10 or so. Today's scan includes the brain, orbits and sinuses and we're looking at the edema and inflammation to see if it has resolved and of course, getting a read on the Mucor in the basal ganglia to see how it is responding to the increased dosing of Ambisome.


Our family had a great visit this past few days with Jason Mayer, a good friend from WA who flew down to hang with us and enjoy some fantastic weather. Paradise I think he called it.  We met him on Friday morning at the San Diego Zoo and he got to experience first hand how odd our lives have become with all this cancer business. First of all, Phil was wearing his Walgreens Home Health fanny pack with his Ambisone mobile IV in it. Secondly, he had to caution Jason not to bear hug him because of the port in his chest! Jason gave his bear hugs to Bennett and Olivia and I instead, fo shizzle! Lastly, before we could go into the zoo, Phil had to meet his nurse at the entrance and have a blood draw. He proceeded to climb into her Mercury SUV and stealthily get a few tubes of blood taken from his port. The nurse preferred that he do it alone - it was all very hush hush and kind of bizarre. Like a drug deal but legit. Welcome to our life Jason!  He rolled with it like a champ.


We had a great day at the zoo and Phil did awesome. The temperature was in the high 70's, the kids ran amuk, ate ice cream, saw tons of cool animals and decided the monitor lizard was the highlight. As Jason would soon see however, the Piper has to be paid. Saturday's plan to meet us for breakfast turned into a late lunch because Phil was so wiped out from the big day before. The funny thing was, after our late lunch, I found both of them asleep on the couch!! Jason maintains he was "supporting" Phil but I wonder.... He was a great guest and spoiled us with dinners, did some chores for us and basically rolled along at our pace. Olivia latched onto him immediately and cried alligator tears when he left!


On Saturday night Phil's Edgewood High School Class of 1980 had their 30th reunion in Pittsburgh and took the opportunity to Skype with him.  We dialed in the call and were quite surprised with what we saw ~ Richard McKenna et al in his mother's basement, apparently "just like the old days"!  Unfortunately, there were problems with the reservation at Foli's so the McKenna's became the place to be.  Classic!!  Oh yes, there was Rich's mother too, partying with the crew and saying hello to "dear Philip" and admonishing him to "get well soon because we've all been praying for you".  She was so sweet and sincere and represents everything I love about his hometown and his small high school and the close knit bunch of yahoos they are!!  You must know this is said with the most love you can imagine and not some slanderous slur.  


These "yahoos" have done so much for my family, you have no idea.  They have sent out the battle cry to all corners of this country, set up our cleaning service, inundated us with books, letters and gifts and many are supporting us financially.  They have come out of the woodwork to support Phil, the skateboarding-Ted Nugent loving-tennis playing-acting-swimming-running-joking guy they knew and loved in high school.  The call gave him lots to laugh about and was excellent medicine in it's own right.  These are very good people.


The rest of this week has us following up with Dr. Ghosh and Dr. Kossman for next steps regarding the MRI results.  We've got teacher conferences for the kids and my best friends Tricia and Cherylyn are coming from Washington for a long overdue visit.  I plan on relaxing at the spa, going clubbing one night with my ladies and getting in as much girlfriend time as possible in between the demands of my regular life.  It's going to be crazy but that's the only way we're gonna gitter done.  Bring it!  

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.

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!