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.
It's Monday now, the day after surgery and we are collectively exhaling after what has been a long 24 hours for Phil. He did very well during his surgery although he did bleed quite a bit and needed additional platelets during the 3 hour procedure. Dr. Mansfield found very infected ethmoid and sphenoid sinuses and had to remove a small portion of free floating bone deep inside the sinus area which appeared infected as well. He called in Ghosh to observe because the bone removed was very close to the paracranial flap he had created during the previous surgery for mucor. From the gross appearance in the OR it looks like a routine bacterial sinus infection. So, after packing the sinus cavity with three different antibiotic laden products he sent Phil up to the ICU to recover and then back to his room on 3 South. He recovered fairly quickly and was groggy but gave me the thumbs up when I came in to see him.
The rest of the morning was spent hanging out and helping him eat ice chips and come out of the heavy anesthesia. Phil's brother David had come down for a few days and we spent the day napping, telling stories and engaging/encouraging Phil. He did fine until just after I left to take my kids to dinner and get them to bed for the night. Apparently the drainage from his surgery combined with his oral intake was too much for his stomach and he threw up all of it. Poor guy. He wasn't in any pain but according to David he was pissed off! He hadn't eaten in 4 days and he was finally at his rock bottom. He was sick and tired of feeling sick and tired (I can't believe it took this long) and just wanted to eat something and feel better. Once things settled down he and David watched The Godfather and he finally fell asleep for the night.
This morning he is feeling better after receiving more platelets overnight and getting some much needed rest. He ate some Jello and broth and started in on Gatorade and saltines. A repeat MRI was done late morning to check the status of things post operatively and we got the report on his cultures - all are growing staph aureus, NO MUCOR. So, we're dealing with a routine sinus infection and got to it very early. We are so thankful and Phil was fist pumping. Major relief around here. He is so tired and fatigued and although I know he would have rallied for the mucor fight too, I am glad he doesn't have to.
Now he can sleep, eat, take his medicine, build blood and hopefully go home in a few more days. Never has a sinus infection been a more welcome diagnosis!
It's getting harder for me to find ways to share what seems like the same old information. To make our lives seem more interesting to read about than they probably are. As I sit here preparing to give you the current run down from our visit to Dr's. Mayer and Mansfield I'm putting myself in your shoes and thinking about what it must be like to check the blog and read the latest update on Phil and our family. Do our lives sound as mundane to you as they feel to us? Are you getting as antsy to move on with treatment as Phil is? Are you waiting for a new story line - ready to hear more than "keep on taking the Ambisone, schedule another MRI in 2 weeks, and yes, no more chemotherapy for the time being"? Well, join the exclusive club known as "hurry up and wait".
This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low. This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily. Mucor, you may recall, needs the iron to replicate. Exjade robs the the Mucor of iron. This is just one more way to combat the Mucor and hopefully send it packing. Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.
This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things". Not for the pushovers of the world is ENT. I know why I called him a Zen Master. He is one smooth operator. Anyway... Overall, Phil looks great to him and he saw no signs of Mucor. He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue). He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.
Until then, it's start the Exjade and see what that does over the next month or so. When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile". So, there you have it. Awhile, folks. Just another way of saying "hurry up and wait" which of course is easier some days than others. Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.
