God at Work

Not wanting to sound like Debbie Downer all the time I thought it might be a good exercise for myself and a nice testimony to share with you the myriad ways God has shown up lately.  Bennett has been having difficulty getting to sleep so we have been praying specifically every night.  His anxieties about all that is going on and the tremendous stress he is under culminate at night so he is struggling a lot.   He has had tears, fears and separation anxieties and they have been brewing into a real sleep disorder. Accordingly, I have been talking a lot about the promise of peace God makes to us in Philippians 4:6-7 and Bennett and I have been praying together every night about Phil, the range of emotions he is experiencing and God's big plan for our lives~ even when we can't see or understand what He's up to.  It's been one more intense road to walk down with my son on this journey with cancer.  A heartbreaking path but also a wonderful opportunity to share with him the Truth of who God is and to teach him about the loving and faithful character of God.


Philippians 4:6-7 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  


My sister Anita recommended that I write down on Post-It notes or in a journal how God answers prayers so Bennett can see God at work.  He's been told many times about the story of my pregnancy with him and his miracle birth (Post-It #1) and we will be adding to his original Post-It from now on.  


As for my list, it starts with a conversation I had on Sunday.  I've been attending church at Jamul Community Church where I feel loved even though I'm hardly known, which Bennett absolutely loves and which Olivia is slowly warming up to (per usual).  My dear neighbors Jim and Catherine and their daughter and son-in-law go there as well.  Pastor Gary has been teaching from Luke and each sermon I've heard has seemed especially meant for me.  I can't make it every Sunday due to Phil's health status but this past Sunday I was able to go and spoke with Pastor right after service.  I could barely talk because I was so moved but I told him how overwhelmed I am and how difficult it is to get there regularly, how I needed help, etc.  Before I finished getting the words out, he took my hand and said the body was there to help and asked if he could he pray for me.  He put his arms around me and said he was a "hugger" and hugged and prayed for me and my family while we both cried.  It was...perfect and beautiful and the comfort I have needed from the church body for so long.  I have found my church home.  Hallelujah!


Yesterday I called the church office and talked about needing meals a few times a week and to have some firewood cut up on our property.  Within a few minutes a woman from the congregation called me and by that afternoon she was at our house delivering a casserole, salad, fruit and garlic bread.  She also has an idea for getting our wood cut and stacked and just needs the go-ahead.  She is part of a care group and they want to more or less adopt us.  Later that evening I was telling all this to Jim and Catherine over our fence (and thanking Catherine for the generous check she gave me last week along with a beautiful basket of pumpkins).  We talked about how challenging it still is for me to ask for help and how I am trying to stop saying "No" for everyone.  So, I told them about the firewood and our poor heating situation - another blog topic perhaps - and she texted me later that evening to say she and Jim had firewood to bring over to us today.  I said Yes they could bring it over : )  


Lastly, earlier in the day I had a visit from Trenna.  She told me that she and several of our friends had talked about either taking me out to make Dream Dinners or if I couldn't go, to make them for me.  She and her work out partner also plan on taking a day off from "real" working out and coming over here instead and moving all my boxes off of the dank floor and onto pallets in my storage area.  What I did to deserve such love and acts of service I'm sure I don't know ~ it's the Body of Christ at work in the lives of His loved ones.


God IS showing up and He is blessing us demonstrably in this maelstrom.  Take note Bennett!  The Post-Its are piling up because He loves you and I and Olivia and your Daddy fiercely.  You will sleep soundly again.  Great is His Faithfulness.

Another Relapse

It’s been entirely too long since I last posted.  There are many reasons for that – not the least of which is my general state of fatigue and burn out on posting about cancer and the roller coaster we ride all the time.  I have felt the need to keep you up to date on what’s been going on but haven’t had the time, energy or usual calling to sit down and put it into words.  Until now, that is.

A few days ago I had prepared a beautiful post about bone marrow transplant (BMT) and was very close to publishing it.  It was full of details about what we’ve been doing over the last month and what our journey ahead looked like as we anticipated finding a donor etc.  Thankfully I didn’t post it and don’t have to back track.  Everything has changed for us so now I’ll recap and bring you up to date on where we find ourselves and what’s going on with Phil.

A little over a week ago Phil and I met with young Dr. Kossman and Phil won approval to fly to Atlanta to see his friends for a long weekend.  At that visit he told the doctor that he found some new lymph nodes above his left clavicle.  At the time they were like small peas in size and none of us were certain of their significance – they could have been reactive to the pleural effusion he just had or to the mild infection he’d been treated for.  Of course, they could mean recurrence of the lymphoma but they were small and we all hoped that wasn’t the reason.  The doctor told him to go to Atlanta, have a great time, don’t mess with the lymph nodes and he'd see how they looked when he got home.

Phil did have a great time and returned home thankful to have seen his lifelong friends.  But he returned home tired with a sore chest and difficulty sleeping at night from pain.  The day after he came home he had another thorocentesis (#4) and almost 2 liters were removed from around his left lung.  He immediately became nauseated, had severe pain and was dizzy and lightheaded.  We spent the day in the radiology department where he received I.V. fluids, morphine and anti-emetics.  A rough, tough, homecoming.

The next day when he followed up with our Dr. Kossman he looked like crap and felt even worse.  The Percocet he took for pain at home was not holding him through the night and he was exhausted.  Dr. Kossman measured the lymph nodes in his neck and they were now 1.8 and 2 cm respectively and he had developed another one down below his clavicle measuring 2 cm as well.  There was also a new one in his axilla (underarm).  With these new nodes, the nodes we knew of on his last scan and another malignant effusion, Phil was clearly in relapse.   As Dr. Kossman said, “your disease is coming back forcefully and in a lot of places at once.”

So.  No bone marrow transplant.  They are not done on patients who are not in remission. On that note, neither brother is a match.  If Phil achieves remission again he will have what is called a MUD transplant (Matched Unrelated Donor transplant) with a donor from the National Registry.  This also means he will stop the nelarabine chemotherapy.  It is no longer working.  He will move on to the next option called alemtuzumab or Campath-1H.  It is a monoclonal antibody which targets CD-52 protein and knocks out T lymphocytes (all of them).  Unfortunately, by knocking out all T cells and not just cancerous ones it is very immunosuppressive and will put Phil at risk of opportunistic infections – like Mucor.  He will have to resume ambisone, his favorite!  

He will be having a CT/Pet scan to check the status and extent of disease again before restarting treatment.  That is scheduled for the middle of next week.  Until then he will basically be untreated and in an unopposed disease state.  That means more suffering and discomfort for him.  Our kids clearly know he is ill but we have yet to explain the full extent of what is going on.  Once again we call on you to hold us up in your prayers as we negotiate these numbing, stressful and bittersweet times as a family.   

Game Changer

The results are in and things couldn't look much better. Phil's bone marrow biopsy appeared normal morphologically (regarding the form and structure of the bones) and the flow cytometry studies (the microscopic function) were also normal. His marrow is back to an absolutely normal healthy state!


His PET/CT scan showed a residual 1.3 x 2 cm chest nodule which is barely hyper-metabolic (active), some mild residual scar tissue around the heart with no metabolic activity, scarring in the thoracic vertebra and pelvis with no metabolic activity and no remaining pleural effusions. This is an excellent report! So excellent in fact, that Dr. Kossman referred Phil to Dr. Edward Ball, Bone Marrow Transplant Specialist at UCSD's Moores Cancer Center for a consultation. We saw him and his staff yesterday for an educational and inspiring overview of bone marrow transplantation (BMT) and left with a binder full of information and directions about what our next steps are.


Phil is heading into the very down days of post chemo exhaustion so BMT is not on his front burner at the moment. However, knowing that it is now within the realm of possibility after so many setbacks and complications and so much suffering, I can say on his behalf that we feel a measure of relief and the beginnings of real optimism for a cure. These are VERY difficult words for either of us to say, needless to point out, ideas to think about or entertain. I would appreciate your continued prayers as we negotiate the next steps in this journey.


More details about BMT will be coming in future posts but here are the high points from yesterday's consultation:


1) Phil is definitely a candidate for BMT.


2) Due to continued concern for possible mucor infection, he will remain on his oral antifungal agent throughout the entire process of BMT.


3) The first step involves insurance (of course) and getting all the ducks in a row in order to do the HLA (human leukocyte antigen) testing of his brother's to see if they are a good match. They represent the best chance for an optimal match. From there we will go to the National Bone Marrow Registry.


4) In the meantime, Phil will continue his chemotherapy and is scheduled to begin his next round on September 12th. We have a follow up visit with Dr. Ball in about three weeks and will be doing a lot of reading in the meantime. It feels good if not daunting to be changing gears again.

Power of Prayer

My sister Terry is currently in Israel in conjunction with her work as a mammography technologist and educator working for the Department of Defense at Naval Medical Center here in San Diego.  In addition to lecturing and educating the local professionals, she is sharing her travels with her son Josh, my nephew, whom you've heard plenty about and he is enjoying some well-deserved R and R.


As Terry said before she left, it feels weird for our families to be apart.  They have been on the frontline during this siege from day one and have been there for every single episode in the saga.  They are on speed dial, know where everything is in our house, know the kids routines for bedtime, and have our backs for everything and anything.  There is nothing they haven't done for us or won't do.  It's just an understanding and it is priceless.


Having said all that we are so happy for Josh's opportunity to go with Terry on this trip, to see the wider world and take a break from being amazing for awhile.  For him to just be a 27 year old guy and live for himself a while.  We'll be here when he gets back, believe me.  And Terry, well, Mother Teresa she will always be.  But for the next 10 days or so she can ponder the mysteries of the Holy Lands, refresh her soul, deepen her faith and capture the beauty of it all in her camera lens.   


No matter what, they are ceaseless in their efforts on our behalf, and they continue their prayer efforts half way around the world. We are blessed to have them as family.

Josh praying at Christ's Tomb 

Candles at The Church of the Holy Sepulchre

Inward Bound

Sitting around with friends in college I heard legendary stories about this "life changing" program called Outward Bound.  Many were the students who told of a cold night spent huddled under a bush or make-shift shelter, testing the limits of their physical and mental endurance in order to make it through their solo experience (24 hours spent alone in nature).  It sounded both awesome and intimidating.  I'm certain that if given the opportunity to experience Outward Bound back then, I wouldn't have chosen the journey.  The idea of being completely by myself for 24 hours, let alone in the middle of nowhere, did not sound remotely appealing.  A physical education major, I think I'd have been alright with the physical demands of the program.  However, my inside world, although very familiar to me, was not a very stable nor well organized place at that time.  I had a good idea of what I'd find if I had to go plumbing there for strength and resilience on a dark cold night during my solo experience and it wasn't comforting.  The mental and spiritual test was what I feared and I didn't want to be pushed to see what I was made of - I already had an inclining and it wasn't pretty.


I haven't thought about Outward Bound for years now and I outgrew the fear of how I'd perform long ago.  Having experienced life's vicissitudes, I've built abundant inner resources, gleaned from the passage of time, the wisdom that comes from deep introspection and the benefit of psychotherapy.  I no longer have an unstable, unorganized or un-examined inner life.  Although there probably was a point in time where I might have loved the challenge of Outward Bound, it has long since passed and I don't feel that I've missed anything by not having gone on that journey.  In point of fact, my inner life IS my life and now in this refining fire of Phil's cancer Inward Bound is the only journey I'm truly interested in.


Speaking of Phil's journey, there is news to share.  He is recently home from his latest chemotherapy regimen and did very well with it; the best round so far in some ways.  He tolerated the triple medication cocktail so well that he ate heartily and rarely had any nausea.  He enjoyed visitors and walked the halls daily, keeping up his strength and maintaining his popularity with the staff.  Prior to admission however he was noting some soreness in his left rib cage and fluctuating shoulder pain.  During the hospital stay Dr. Kossman ordered a chest xray which showed Phil had another pleural effusion and there was a questionable area in the center of his chest.  This could have been artifact from the pleural effusion but he needed a CT scan to find out what it really was.  An Interventional Radiologist was on hand for the CT and drew 1 Liter of fluid off of Phil's lungs (that's a lot!) and a quick read showed a lymph node in the middle of his chest.


Now, it's never a good thing when Dr. Kossman calls me first thing in the morning and says he needs to talk to me about "what's going on with your husband".  I'm all too familiar with this drill.  This happened the morning after the CT scan before I went in to see Phil.  He reminded me again about the liter of fluid and the lymph node in Phil's chest.  But he went on to say that the fluid was all lymphocytes meaning that Phil's lymphoma was recurring and the lymph node in his chest measured 5 cm.  Ah shit.  Not good.  Not what we were prepared for and yet, I think, we both knew deep inside that pleural effusions don't just keep recurring for NO reason, and certainly not effusions of that size.  Later as Phil and I cried and talked about it together, we realized that the lymph node had grown since his last chemo treatment 9 weeks ago when he had developed the right sided effusion and had his last CT scan.  In other words, it grew quickly and right on the heels of very aggressive chemotherapy.  Ah double shit.  Not good at all.


Well, that was a week ago and we've since celebrated my father's 80th birthday with my five siblings, and Father's Day as well with both he and Phil.  It was a crusher of a weekend, celebrating my awesome dad and the life he's lived, the family he's raised and the lives he's touched.  He played a huge role in raising my sister Terry's sons and seeing that documented in picture after picture was very special and yet full of conflicting emotions of grief, hope, awe, wonder, thanksgiving and also plenty of prayerful petition that Phil will live to see his kids grow up.  While we do not know where God will take us from here we do know that He has laid a path in front of us and has walked with us every step of the way.  To question the wisdom of His ways now would be folly.   


Phil is in recovery from his current chemotherapy and will hopefully not need any transfusions over this weekend.  So far so good.  We will meet with Dr. Kossman Monday to recheck his counts and again on Friday (while we move into our new house by the way).  He is going to be followed closely and Kossman will be culling through the literature to see where we go from here for the best treatment strategy.  When we know something we will share it with you.  Until then, please continue to cover Phil and our family in your generous prayers.


As for Phil, he says Inward Bound is where the real journey is, the journey to the center of who God made us.  We're going deeper still.


Proverbs 19:21  
Many are the plans in a man's heart, but it is the Lord's purpose that prevails.

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.  

All In

We are no longer living day to day around here, time is now marked in 12 hour increments. That's how quickly things are changing and progressing.

Phil had another MRI this morning and the cultures have yielded more definitive results. Today has been a big and unfortunately, very difficult day. The cultures show absolute evidence of a mixed bacterial and fungal infection in the sinuses and henceforth in the brain. The fungus is called Mucormycosis and is very common in diabetics and immunosuppressed patients. The MRI shows advancement since yesterday of the infection to involve new portions of the brain. So despite having been on high doses of antibiotics and antifungals, ground is not being gained.

The optimal treatment for this fungus is surgical debridement, which although radical, is Phil's best chance for eradicating the infection. Combined with his antifungals, tomorrow morning he will be having a very involved neurosurgery to remove his left sinuses, his left eye and orbit and portions of his left brain that are infected and non-functioning anyway. It's hard core -- as if it wasn't before. During the next several weeks his chemotherapy will have to be put on hold lest any further immunosuppression allow the Mucor to take the upper hand.

We are awaiting the final debriefing from the team of surgeons and are covering Phil with our prayers and love. We (Jeff, David, Anita and I) are also telling stories and laughing a bit too. Phil is tired and a bit fearful for tomorrow's events but he is also ready to go. He's not one to sit back and do nothing if there's something to be done. He's going for it. Bravest man I know, facing down terrible odds and "fighting a raging fire in the middle of a hurricane".

If Phil were playing poker, I'd say he was all in. Trusting God, and all in.

On Our Knees

Today's blog is going to be short and to the point.  There are too many details to report and frankly they change with the hour yet don't change what you really need to know.  Phil needs prayer and lots of it.

As I am typing this he is undergoing surgery to diagnose the cause of this horrible infection in his brain.  Since I last posted, the infection in and around his eye has worsened and it looks like we are dealing with a particularly "wicked" fungal infection (to quote Dr. Kossman).  He and the 3 or 4 other specialists who've been consulted in this case are very concerned about the infection because it is extremely difficult to eradicate short of surgical debridement.

Debridement means going in and cleaning things out and since we're talking about the brain, well, you can grasp the gravity of the situation.  As of today Phil has lost the vision in his left eye and there is reason to worry about the right eye as well.  Fungal infections can spread quickly so information needs to be gathered quickly as well so the appropriate therapies can be continued or started.  

The goal for today's surgery is diagnosis, not therapy or cure.  That much has been made clear to us.  Having said that, our hopes for today are for an uncomplicated surgical course, sufficient biopsies that will lead to productive treatment and no further surprises or obstacles.

The kids and I are surrounded by family and good friends, including Jeff Breland, and feel the love and prayers that have been pouring in.  Phil is in excellent hands and Dr. Kossman has brought in the county's finest specialists in ENT oncology and neurosurgery.  The rest, as ever, is in God's hands.