Don't even know where to begin this one. It's only been a day or so but I've lost all sense of time again. Wasn't it just the other day I was practically bragging about how wonderfully everything was going? Reveling in the blah-ness of it all? Extolling the merits of being underwhelmed? Well, let's just say that ship has sailed.
It started out simply enough in the mid afternoon two days ago. A mild headache, nothing a few Tylenol couldn't take care of. That is until a few Tylenol couldn't take care of it and Phil had to move on to the big guns. By that evening we were making a call to the doctor because 10 mg of oxycodone weren't doing jack-squat and he was in excruciating pain whenever he moved his left eye. Fortunately for us, and one of God's small mercies, Dr. Kossman was on call.
Before I continue, I have to say this. It really can't be understated how awesome it is to reach your own doctor when you call the on-call service in a crisis. There is no explaining to do, no background to give, no time wasted. You just hit the ground running. And who's voice do you most want to hear when you're in crisis but the one who's been holding your hand and shepherding you through? So, when we reached Dr. Kossman I already felt better for Phil and whatever the hell was going on with him. The Captain was at the helm.
Back to the drama that was unfolding in my bedroom (don't even go there). After much discussion we decided to try other options for pain relief rather than spend the night in the ER and would check in with Dr. Kossman first thing in the morning. Despite our best laid plans however, it was a long, pain-filled, sleepless night. In the morning, because Phil had developed double vision in his left eye and numbness across the left portion of his scalp during the night, we were sent to an ophthalmologist. By now Phil could barely open his left eye and it was bulging a bit.
After a very thorough eye exam, the working diagnosis was that he had an evolving cranial nerve palsy of the III and V cranial nerves. The III nerve controls the movements of the eye muscles and the 1st branch of the V nerve controls the sensation across his scalp. Some inflammatory process in the brain was to blame for this. But what? Tumor? Infection? He needed an MRI STAT. Sounds like a scene from ER -- but unfortunately it wasn't. To say he looked like shit is to be flattering and I know he didn't feel much better.
Dr. Kossman, being the consummate physician he is, wanted to order the MRI himself and who am I to stop him? The guy is freakin awesome. On a crazy busy clinic day, he walked across the street and spent 30 minutes looking over Phil's MRI from one month ago with two neuro-radiologists before seeing us to discuss our next move. He's just that kind of doctor. Oh, and he worked us into his already unforgiving schedule. When he took Phil's blood it showed the obvious -- profound anemia, next-to-no platelets, and only 200 WBCs. That alone would make anyone feel like crap but combine it with a bulging eyeball, headache, postchemotherapy, and no sleep...you get the picture. When given the option to go home after the MRI or go in the hospital for pain control and support, Phil cried "Uncle!" and he got a bed on 3 South faster than I've ever seen.
Things happened pretty fast from there on out. He had lots of labs drawn including blood cultures. He was given IV fluids and 2 units of RBCs and platelets. He had his MRI. A neurologist (Dr. Evans) consulted on his case. An infectious disease specialist (Dr. Mayer) consulted on his case. Dr. Kossman came and rounded on him at the end of his day ~ 8:30p.m. More blood was drawn. More platelets were hung. Vancomycin (an antibiotic), Acyclovir (an antiviral), and Amphotericin (an antifungal) were all hung. Pretty much the whole kitchen sink was going into the guy.
And here's why: According to the MRI the cranial nerve palsy is due to an inflammatory/infectious process going on in and around the L orbit and in the cavernous sinus deeper in the brain. Shit, his brain is infected. That's serious. No wonder there was so much damn foot traffic through his room this evening. Those were my thoughts on the drive home from the hospital last night, when I could start wrapping my mind around what was going on. It's amazing how long it takes things to sink in when you're in crisis mode.
Today as I write this we now know that his blood cultures are all growing bacteria, gram negative rods for you medical folks. It is not uncommon for neutrapenic (immunosuppressed) people to grow gram negative rods in their blood cultures. However, this suggests that Phil may have two separate processes going on. Dr. Mayer believes that to be the case. He thought out loud to me that his port could be the source of this blood infection and he will do everything he can to sterilize the blood with the antimicrobials to save the port. Otherwise he'll need a new port down the line.
As for the infection in the brain, he doubted that was related to the bacteria in the blood but he won't know until the cultures and studies come back in several more days. Phil did have a blood patch in late August with his first spinal tap which if done with infected blood could have been a source of contamination. However, Dr. Mayer believes the timing is too far out. So, we will watch and play the waiting game. Meanwhile, Phil is very tired, weak and out of it. Thankfully, he is also mostly out of pain.
As for the rest of us, well, what can I say? Our trains are ultimately hitched to Daddio's. Over the last few days the kids have been spending a lot of time with their Aunt Terry and cousin Josh. Thankfully and in further evidence that God is a genius, we have them nearby to love on the kids and provide distraction, comfort and a sense of routine. For Bennett and Olivia, their stress has been showing up with bad dreams and emotional outbursts or for instance, last night Bennett having a "bad headache".
I think it was at breakfast yesterday when I told Bennett I needed to call the doctor about something and out of nowhere he shouted "I hate cancer!" I just looked at him and said "I do too honey, we all do." There was nothing else to say to that. He nailed it.
Showing posts with label port-a-cath. Show all posts
Showing posts with label port-a-cath. Show all posts
Friday, September 17, 2010
Saturday, August 14, 2010
Hello Mr. Anderson
If the title of this blog eludes you, then you'll have to take it up with Phil. His sense of humor these days seems to revolve around many of his favorite movies. It has been good to hear him joking around again after so many days of both of us being Debbie Downers (sorry all you Debbie's out there!) For instance, in the midst of recounting the whirlwind of bad news he can often be heard quoting Bill Paxton from the original Aliens movie "this can't be happening man!"
Yesterday he had a port put into his chest to deliver his chemotherapy. Basically, the port is a catheter that is surgically implanted under the skin then tucked up under the rib and inserted into the superior vena cava so the medication can go directly into his circulation. When I dropped him off to the surgery center he said he was going to be "Matrix-ized". He will wear the port throughout his entire chemo regimen and let me tell ya - if it could teach Phil that cool martial arts stuff he'd do it!!
Prior to his surgery he had to be NPO which means nothing by mouth after 6 a.m. His procedure wasn't until 2:30 (and didn't actually happen until 3:15) and for a guy, let alone a diabetic, that is a long time to go without! When I joined him in the recovery room around 5:30 he was asking the nurses for margaritas and chips and asking when he could go dancing!! Classic Phil.
The recovery room nurses told me he'd charmed the surgical staff and he'd even had time to counsel a young volunteer on her career path. Even though the surgeon was running behind, his counseling session and the smoking and joking he was doing in pre-op made him so popular they didn't want to let him go. The feisty Latina nurse and he were flirting over the sexy tight white compression hose he gets to wear every time he has surgery too. So all things considered he could be doing much worse.
This is serious business, no doubt. But I don't want to paint a picture of utter despair and hopelessness here. Any of you who've seen Phil do a commando roll know he's got some surprise moves on him and the man has fought through some serious shit and won. This is Team Conrad we're talking about after all and the sun does rise again. We just needed a minute to catch our breath.
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