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.  

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.

Another Long Day

What a long day yesterday was - for Phil I mean.  I actually faired well up until the end of the evening which I'll get into later.  Mostly I kept Phil company while we waited to hear the results of the tests he went through.  With the fever he had in the night the initial work up included the obligatory urine and blood cultures, a chest x-ray, and an MRI of the sinuses and brain.  About midway through the day Dr. Mayer (Infectious Disease) came in for a bedside consult and Dr. Mansfield (Oncology ENT) had us wheel on over (literally) to his office across the street so he could look in Phil's sinuses with his sophisticated equipment.


During morning rounds with Dr. Kossman Phil mentioned that he'd started having a cough and a pain in the middle of his chest when he took a deep breath.  It was sharp and very painful.  Dr. Kossman didn't hear anything in the lung fields and wanted to see the chest xray results.  He thought it could be an irritation to the pleura (lining of the lung) from the methotrexate and wanted to keep an eye on it through the day.


By 5 p.m. everything was looking fantastic and we'd confirmed that there was nothing growing in any of his cultures, his chest x-ray was totally clear, his MRI was awesome - no signs of any active processes and the Mucor and previous infections were completely resolved.  Dr. Mansfield had taken a look at the sinuses and down Phil's throat and declared everything there to look great with no signs of active infection.  So, while this was all really great news, we still had no culprit for the source of the fever.  


During the consults with both Dr's. Mayer and Mansfield Phil mentioned the chest pain.  While neither heard any abnormal lung sounds, both were concerned about the pain as well and the need to rule out a more significant cause like a pulmonary embolism (a blood clot in the lung - potentially life threatening).  As we got back to Phil's room he was suddenly in so much pain he couldn't sit still and starting to have difficulty breathing deeply.  He called for morphine and finally settled down.  At this point the phone rang and it was Dr. Kossman, ordering a spiral CT scan to rule out the pulmonary embolism.  Now Phil has azotemia (a type of decreased kidney function) and the CT scan requires a dye which is excreted by the kidneys.  To make a long story short, there is risk to his kidneys of further worsening function so he'll be getting a LOT of fluids through the night to flush them to minimize this risk.  Between the pain and the fluids the poor guy may not be sleeping much tonight if you know what I mean...


Fortunately spiral CT scans only take about 10 minutes to do and we had the results quickly.  There was no pulmonary embolism and we were able to learn that the 13 cm mass of lymphoma tissue that was initially in his chest at diagnosis is gone; it is now <1cm of scarred tissue.  In other words, Dr. Kossman says it is "essentially nothing".  Well that was worth the risk to find out I'd say!  So, again, we're back to thinking that Phil probably has a viral respiratory infection or a pleuritic irritation from the chemotherapy.  Morphine is the treatment, to keep him comfortable until there are signs pointing to another diagnosis or way to manage it.


I said I did well until the evening.  When I was getting ready to go for the night Phil started to have more chest pain and was really hurting.  We called the nurse and got him the morphine but it took so long for him to get comfortable.  There was nothing I could do to make it better.  I just had to wait it out with him until the relief came.  And it took at least 20 minutes.  That was a long time.  Finally he felt comfortable enough that I felt comfortable enough to go home to the kids.  What a bugger.