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

A Time To Be Silent and A Time To Speak

When I was in grade school my report cards frequently came back to my parents with little comments like "talking in class is a problem", or "quite the social butterfly".  And I remember my parents always telling the story of our family going camping and me wandering off to the nearby campsites "making friends" while they looked around trying to find where I'd gone.  In fact, being in a family of six children, I'd say I grew up with A LOT of talking.  I distinctly remember a lot of talking at the dinner table and loud board games and even louder pool parties.  Seems there was always something to say and someone to say it.  


Now, I crave my quiet time.  My son woke up the other night, disturbed in his sleep by the incessant singing of a mockingbird right outside his window at 3 a.m. He was so exhausted and miserable that he sought refuge in our bed far from "the noise".  For me, it was so much quieter than the noise of details and anxiety vying for attention in my head that I found it soothing and beautiful and it quickly had me back to sleep (in our cramped quarters no less).    


I do find it interesting now, as the spouse of someone with cancer, as someone who spends a lot of time in the hospital, how quiet I have become.  I realize how quiet I've become when I haven't blogged for awhile.  It seems deafening, the quiet.  I haven't totally figured it out yet - why I stay silent, sitting on the newest of information about Phil.  My little book of notes is just sitting on my bedside table, waiting to be turned into a post.  I am fully aware that I am the conduit, the gatekeeper of sorts for the friends and loved ones waiting to hear about Phil's latest turn of events.  I am fully aware but remain silent.  It's strange how at times, when he is in crisis, I can't blog fast enough - sometimes posting every day.  At other times, a week or more will go by.  Clearly there is some anxiety management underway.  


For starters, I think staying quiet is both a way to stop the process from moving forward for a while (so to speak).  To keep it on the page, closed up in my book of notes.  It is a very primitive form of control.  OK, I've heard the latest, taken that bite and chewed it up.  Now I just close the book on it, literally and wait until the next appointment and THEN I'll open up the book again ~ as if nothing can happen as long as I don't open up that book, or speak about it.  Very wishful, magical thinking.  Well, on with the latest in reality then....


Phil's pleural effusion was tapped (drained) last week and 550cc was removed.  That's half of a liter, as in half of a huge Coke bottle worth of fluid.  A LOT!  It was mostly old blood and WBCs and the overall results were Good but Confusing.  When Phil was neutropenic (had no WBCs) something in his pleural space caused a lot of inflammation/irritation.  He was also thrombocytopenic (low platelets) and couldn't clot off bleeding from the irritation hence the blood in his pleural space.  When he was given Neulasta to stimulate WBCs he made a lot of them and they rushed to his pleural space too.  They also gave him lots of IV antibiotics to cover the possibility of infection.


There were no signs of bacteria, fungus, Mucor, malignant cells, or lymphoma in his effusion and the cultures are not growing anything either.  There is nothing that looks like an active infection.  The confusing part is what caused the effusion in the first place.  He could have had an infection that cleared with the IV antibiotics in the hospital and since there still isn't anything growing in the cultures, we may never know.  So, he sits tight and waits to see how he recovers.  There is no treatment prescribed and he waits on some longer term tests like TB, and fungal cultures.  Fortunately, he is feeling better every day.


NOW THE BIG QUESTION?  WHEN TO TREAT WITH MORE CHEMOTHERAPY?
Practically, Dr. Kossman would like to treat Phil in 3 weeks.
Philosophically, not knowing what is going on in his lungs, whether that is a resolving infectious process or what, he doesn't want to just bottom Phil out again right away.  Plus, as he said to him last time, "I've almost killed you now three or four times".  He wants to give Phil time to recover just enough to take him (and whatever residual lymphoma may be there) back down hard.  For now, Kossman will wait until Phil returns from his father's memorial service in early June to start the next round, #5 of a probable 6-8.


And that brings me to the most interesting part of our discussion.  Do you know why Phil gets more chemo, even though his bone marrow is "normal", his chest mass is "gone" and he is in "remission"?  Here's how Dr. Kossman explained it.
     
     CHEMOTHERAPY 101
Say you have a 1 cm mass, like a lymph node.  That = 1 Billion cancer cells.
Take enough chemotherapy to kill all of the cancer cells but the size of a pencil dot or the period at the end of this sentence.
That would leave you with 1% of 1 billion cells which would = 10 MILLION CANCER CELLS left.


That is why cancer is a fucker if you don't mind my saying so.  Not going to stay silent on that one.  

New Uniforms

Do you have an outfit you regularly "go to"?  Around here we call it our "uniform".  Phil and I have a few variations on the theme of our "uniform" but it looks something like this. His consist of a pair of flannel pajama pants or long Champion cotton workout shorts and a T-shirt and some shearling slippers or flip flops depending on the time of year.  Mine varies between fleece sweats or Victoria Secret black yoga pants and a T-shirt du jour with slippers or flip flops.  There is usually a heating pad or rice pad associated with this ensemble by the end of the day.  Like an old sweater that feels comfortable because one wears it all the time, you might not notice right away when there are holes in the elbows or that you've got a big snag somewhere.  Frankly, you may not even care because it is, after all your favorite sweater, or at least, your most comfortable one and gosh darnit, it isn't called your uniform for no reason.  


My point in telling you this little tidbit from our daily life is that our other "uniform" for the last 9 months has been cancer.  We wear it every day, every night, everywhere we go.  And take it from me, it doesn't go with anything I own and tends to clash.  It's hard to hide and accessorize but I try.  Anyway, when we heard just the other day that Phil is in some kind of remission we were both completely dumbstruck.  We weren't prepared for such amazingly good news! We are always prepared for more bad news because he isn't feeling 100% normal yet and because for the last 9 months we've always heard bad news.  It was a weird experience to hear "You're in remission!" while looking at him and seeing that he felt like crap.  After hearing it though I know we both felt that our old uniform had changed.  But now what?  He isn't a cancer survivor quite yet.


The day after hearing the remission news he saw Dr. Mayer the ID specialist who told Phil he needed more testing to get to the bottom of this pleural effusion that has been hanging around since he left the hospital.  A pleural effusion is excess fluid that can accumulate in the fluid-filled space that surrounds the lungs.  Excessive amounts of such fluid can impair breathing by limiting the expansion of the lungs during inspiration - hence Phil's shortness of breath, cough and general fatigue.  He also has fluid around his heart, a condition called pericarditis, which was studied earlier in the week with a trans-esophageal echocardiogram.  It was found to be essentially normal -- at least no infection was found and nothing needs to be done for the fluid around his heart at this time.


As for the pleural effusion, Phil will have a thorocentesis today wherein a needle is inserted through the back of the chest wall into the pleural space and the fluid will be removed and sent for testing.  The cause of the pleural effusion will determine therapy.  Needless to say, we will be very anxious to receive these results early next week.  When we see Dr. Kossman on Friday of this week he will tell us his thoughts about what's next for the lymphoma and the final steps for kicking it's ass to the curb once and for all.  


YES, it's ANOTHER BIG WEEK for Phil and Team Conrad.  We'll be getting a shiny new uniform so to speak.  This time around Phil's got normal functioning bone marrow and no mass in the chest.  Feels like a more level playing field.  Hopefully just a few more details to take care of.  Prayerfully, we submit this yet again to our Lord and Savior who has seen us this far. 

Flat broke and busted, but in REMISSION!

I was sitting beside the pool talking with Trenna watching the kids swimming in the incredibly warm water of our solar heated pool (in late April) when I heard Phil's quiet voice behind me.  "Can I talk to you for a minute?"  I turned around and he was there, teary-eyed and red faced and I knew something serious was up.  I walked back into the house and asked if he wanted to go into the bedroom to talk.  "I'm in remission", he replied with a quavering lip.  He had talked with Dr. Kossman about his bone marrow biopsy results from last week.  (I am overdue on some blogging)


For a long moment I didn't know what to do.  Now he was really crying and lately he's been looking kinda rough around the edges, not like someone who's in remission from stage IV aggressive T cell lymphoma.  You see, ever since he came home from his last hospitalization he's been feeling  pretty beat up and hasn't really bounced back like he eventually does by now.  It could have something to do with the shear number of surgeries he's had, the volume of chemotherapy he's endured and the pericarditis he currently has.  But that's just the tip of the iceberg.  It doesn't take into account the emotional, spiritual and financial toll this whole cancer business has taken on him/us.


Eventually the words he'd just spoken registered with me and the origin of his tears became clearer to me as well.  We hugged and held each other and cried and spoke soft words of thanks be to God in each others ears.  We couldn't believe it.  We still can't.  It feels miraculous and mysterious and overwhelming.  My wounded warrior, Iron Man, Outlier has battled the enemy within and pinned it to the mat, surrendering an eye and a portion of his brain in the process but never complaining and never ever saying quit.  I am in awe of his stamina, his attitude and his fight.  He is Livestrong personified and I am privileged to care for him.


There is still more chemotherapy ahead to finish this fight.  We meet with Dr. Kossman at the end of the week and will learn from him what lies ahead.  For now, we know he describes this as "amazing" and that Phil's bone marrow is full of normal cells where before there was only lymphoma.  To be here after only two cycles of therapy is truly a gift from God.  He is merciful and responds to the prayers of His people.  


Thank you for your prayers and petitions on our behalf.  We are humbled and grateful and our faith is strengthen and encouraged.  We have our own resurrection story!

With and Without You

Phil is "treading water" as Dr. Kossman likes to say but a better description might be to say he's "climbing the walls".  We both are in our own way - he's in his uncomfortable hospital bed, just biding his time waiting to be hale enough to undergo more testing and have an immune system capable of sustaining him at home.  I'm at home and the hospital, caught between two masters, caring for him and the kids and trying to balance both while not losing myself, my sanity or my temper.  


Parenthood is definitely not for sissies and single parenting, well, my hat goes off to you folks and then some.  Add in a routine migraine, any one of a myriad of emotions from the kids, some generalized grief and don't forget, we've got 2 weeks off for Spring Break!  I am actually really looking forward to the downtime with the kids, it's just that close quarters and free, unstructured time can get dicey.  I've got lot's of plans and ideas and I'm praying and working that the family and visitors coming this way next week will make it work out.


Meanwhile, back to our main saga.  Phil continues to receive RBCs and platelets, ride the roller coaster of GI complaints and wait ever so patiently for his bone marrow to begin manufacturing WBCs again.  Each day seems to creep by with a mini-adventure of some sort.  We've had some nice visits with friends, the kids have had extended visits to watch movies, do homework at the corner office table and do their most favorite thing of all -- get junk food out of the vending machine down by the staff lounge.  Phil is going on almost 2 weeks in the hospital this time around (having barely 36 hours at home between admissions) so his highlight with the kids is hearing about the triumphs and tragedies that make up their days.  Recently Bennett ate a Sour Cream and Onion flavored cricket and some meal worms at the San Diego Zoo and Olivia has 2 new loose teeth and has graduated to reading to the H level readers.  And it was this week that Bennett verbalized his deepest fears and hurts to us.  So painful as parents and yet, we are so thankful he did.


In more deep and painful ways than I can express it's a crucible to parent and be a wife and lead a family while a husband has cancer.  No one has it easy.  It is hard and painful to be 9 years old and able to comprehend and imagine what it could be like to have your dad die.  It is hard and sad to be 6 years old and have a mommy who is often too tired to play like she used to.  And it is hardest of all to be Phil, sitting in the hospital day after day after day after day just waiting for his body to make WBCs so he can get on with the next thing, knowing it's not the last thing.  And knowing that we're here feeling all this, for him, with him, without him.

Second Verse, Same as the First

Well that didn't take long. We're back in the big house again, Alvarado, that is. They even saved our corner room for us! My super star husband is digging deep once again to deal with more crapola. Like I say, "Shit happens, carry a big shovel!"

Last night Phil really started hurting from the pleurisy and struggled to find a comfortable position just to be in. Earlier in the day he'd noticed a rash on his arms and legs and we thought he had developed a reaction to one of the antibiotics from his hospital stay. Yee-ha! Something else to add to his list of miseries. Benadryl was taken, promptly turning him into a zombie which the kids found amusing at dinnertime. When he finally turned in for the night it took at least 3 minutes for him to walk from our family room to our bedroom ~ scary slow. And this morning he got short of breath taking a shower. This is Phil Conrad I'm writing about here ~ runner of high altitude trails, skier of double black diamond runs, climber of Olympic Peaks, ultimate frisbee player, cyclist, tennis player, swimmer. This was hard to watch, and more so because he was in agonizing pain. He couldn't take a full breath and his chest and left shoulder hurt with most movements, especially when leaning forward. He had to sleep sitting up yet even that was uncomfortable.

By the morning he had a fever of 101.2 and his blood sugar was elevated. It was time to call Kossman. We had a follow up appointment at 10:15 but it seemed likely he'd want to see Phil sooner. Unfortunately the good doctor was so slammed that all he could do was have us come half an hour early to get started on labs. Fortunately, at the rate Phil was moving, we'd just make it on time! Once there, it was obvious he'd be going back to the hospital. He was still febrile so blood cultures were drawn and his hospital chart was called for along with his previous cultures from microbiology. Kossman did a thorough exam and found Phil's lung capacity was diminished. At the least Phil was septic, neutropenic (he has a WBC count of 200 total), had a pleural effusion (fluid in his lung bases), and probably had a viral exanthem (rash). So back to the hospital he goes for IV antibiotics, antifungals, pain meds, fluids, blood products, a chest X-ray, EKG, more labs, and a couple of consults.

Once here the action was fast and furious. Within 1 hour of admission he'd had his port accessed, labs drawn, EKG done, chest X-ray taken and admission intake put into the computer. Amazing. Oh, and he'd had a delicious (right) lunch delivered to his room as well. So, now we wait to hear the results and let the nurses hang their bags of IV fluids and antibiotics and pain meds.

Hopefully the news will come quickly. If there is an effusion Kossman will have to decide whether or not to "tap" the lung. With few WBCs there is definitely risk involved in tapping the lung to remove fluid. But there are therapeutic and diagnostic benefits to doing it as well. We shall see. In the mean time, my family and I will see about getting Phil some more humane meals while he has to be here. They have excellent patient care but their menu falls far short.

Home Again

It's Saturday now and Phil came home earlier today.  All his studies were normal, his nausea has subsided, he ate a good breakfast and his pain is much much better. Whew.  Thank you God that he is through that crucible.


Bennett and I stopped in after an early baseball game (in which Bennett hit a triple and drove in 2 runs by the way) and found Phil freshly showered, packed up to go and listening to music on his computer.  To say he was ready to make his exit would be putting it lightly.  He's spent a lot of hard time in these corner rooms of Alvarado hospital over the last 7 months. Of course there is more hard time to come; but that's not today.  


Today is about going home to his comfortable bed, really good food, to being loved on by me, the kids and Trenna and Rene's family.  Today is for celebrating Bennett's enthusiasm about hitting a triple and winning his first game of the season.  It's about cuddling with Olivia and listening to her read from her journal and all her favorite books.  It's about watching NCAA Basketball games and hanging out in his sweats -- not a hospital gown, pulling an IV pole around.  Today is about whatever he says it's about.  It's not about cancer, at least for awhile.