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.

Super Star

It's been a week of follow up visits and Phil has received rave reviews.  As I mentioned earlier, he was called an "outlier" by Dr. Ghosh.  When he saw Dr. Kossman earlier this week he had gained a few pounds, was more energetic than he'd been for over a month and was able to make a few jokes with the office staff like in days of old.  Everyone remarked at how far he'd come since being discharged from the hospital.  He had surpassed all expectations.

We also saw Dr. Mayer who has always been the most serious of the bunch.  He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone.  He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.

Today we followed up with Dr. Mansfield, his ENT oncology surgeon.  After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well.  He called him a "Super Star".  He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim.  Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope.  He said he was genuinely excited and not just trying to give him a pep talk.

Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years.  That may not sound like a lot but actually, there is no one in the county with more experience.  And every one of his patients have survived.  Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived.  His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully.  He is a case of one with Mucor on one side of the aisle and lymphoma on the other.  There are no studies guiding his physicians on best practices and outcomes.

Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video.  Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.

For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next.  Dr. Mansfield put it very plainly and clearly.  We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo.  If we put Phil back on chemo too soon and the Mucor comes back it would be his demise.  So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.

Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.