Recognizing Cancer

I've been spending time lately surfing the web, checking out other cancer and lymphoma blogs.  I've found many, many excellent writers, be they family members, significant others, or most inspiring and enlightening to me, the cancer patients themselves.  Wow. There are so many people writing about cancer.  And yet these are just a few of the thousands with cancer who choose to blog about it.  They are the minority - most folks are going through their treatment and staying out of the public eye so to speak.  Despite the traditional and stereotypical effects of chemotherapy not everyone looses hair, looses weight or looks emaciated; we might walk right by them and not even know they have cancer.  Besides, what does a typical cancer patient look like?  There are some generalities yes, but believe me, everyone I've met and seen is different and our trip hasn't been at all to specifications.  

One thing I've learned for sure is that I (we) never saw it coming.  And by IT, I mean the end of our life as we knew it.  It makes me wonder, will you see it when it comes your way or the way of someone you love?  I'm not suggesting that Phil and I, more than anyone else, should have necessarily recognized cancer in the medical sense when it landed on our doorstep.  (Heaven knows we worked this baby up as best we could before he was finally diagnosed).  No, I'm talking recognize in the way our lives changed radically and forever in an instant kind of way.  Will you recognize that your road is forking and there is no stopping it?  See that you are turning in a new direction, are at a cusp, a crossroads, a zero hour where-after you and yours will never be the same.  And know that how you handle it from there will make all the difference in the rest of your lives and the lives of those around you?  And it is going to happen to some of you.  Statistically, probably many of you.  And I'm sorry.

For me, one gift in all of this load of crapola is sharing myself and my struggles, my insights and my aspirations ~ what I am learning through it all.  Perhaps so that you will not be caught unaware.  So you will not be (too) unprepared.  Every journey is personal and not one is the same but there are similar Truths in the human experience.  Everyone suffers, everyone bleeds and everyone requires a lot of grace, love and compassion along the way.  I have the privilege of living in relationship with some pretty wonderful friends and family and between Facebook, letters and the blog I feel connected despite the miles and the separation.  This has been an intense and lonely road for me.  For all of us.  But God has continued to show up and so have you.  Thank you, each one, for reading along and for praying, for commenting and for seeing us through.  For being with us in our zero hour and our new life.  

     "If you can find a path with no obstacles, it probably doesn't lead anywhere."  

          Frank A. Clark

What's the Word

The way things are worded can make a huge difference.  In my Facebook post at the beginning of this week I said, 

" It's official! Chemo is working - Phil was transfused last night with RBC's. He's feeling a bit low but kicking butt and taking names! "

By posting the words "It's Official! Chemo is working", at least 30 people had read words they "liked" and the post earned over 10 comments regarding Phil's continued battle with cancer.  Reading the comments showed me that our friends were still engaged in this drama in a big way and I was frankly shocked by the number of responses. I quickly realized they were just happy to be hearing good news.    


When I posted, I was merely trying to convey the start of another session of chemotherapy.   I wasn't expecting to garner that much attention.  After all, my blog hasn't generated many comments lately.   Being in the middle of this heroic journey, I am a bit fatigued and numbed to a lot of things.  For instance, in posting that chemotherapy was working, I failed to anticipate the response of joy and happiness on your part.  I don't experience the highs of joyousness so much because I am usually on guard for the inevitable lows and have grown accustomed to the roller coaster, having seen it up close and personal.  You don't live it intensely and intimately day in and day out and so of course are counting on the updates and are checking in for the newest details.  I wrongly assume you have grown tired of hearing the repeating details like we have grown tired of living them.  Sorry that I forget these things and again, have been too long in keeping you up to date on Phil's progress, good, bad or ugly.


Now, concerning the inevitable...   Last night Phil ran a temp of 100.7 which has to be dealt with when you're on chemotherapy.  His head hurts, he feels nauseated and his appetite is down.  So today brings urine and blood cultures, a chest x-ray and the loud banging in the MRI to check out his sinuses and brain once again.  There is no obvious explanation for his fever so they'll look everywhere.  His phone rang just awhile ago and it seems even Dr. Mansfield would like to seem him today.  So, at 4:00 p.m. we'll wheelchair across to his office so the good doctor can take a look in Phil's sinus.  Poor guys going to have a rough one today.  He's really feeling up to it at that, don't cha know.  Just yesterday he was thinking he might be going home today too.  Sorry Charlie, you just bought yourself at least a weekend stay in Club Med.  All food and drinks are on-the-house you lucky son-of-a-gun!


While my initial intent was to alert you to Phil beginning chemotherapy again, perhaps this responsiveness to Phil's chemo status will serve a greater purpose.  Once again, we each have an invitation, an opportunity.  For some it's to join in with us who stand shoulder to shoulder, as we carry the burden and lift up our brother and friend in prayer as he fights one more time with the intruder.   For others it's to deepen the commitment of prayer and friendship and connection.  


For me it's to remember that I have a life and that I am not alone in it. I have incredible friends even if they feel far away at times, or my life is off the normal tracks and I don't have time or energy to see the ones who are near.  Lastly and importantly, it's also to remember that I have a say in what my perspective on my life will be.  

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.

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!