Having said all that, Bob's back in the hospital again, three days after being discharged. If it isn't one thing, it's another . . . seems like he's traded one set of symptoms for a whole new set, overnight . . . he was really chomping to leave Sunday, seemed to be feeling, looking and sounding so much better, rebounding astoundingly well, in spite of the latest crisis. When he got home, he slept most of Monday, more sleep in one day than he's gotten in months. I chalked it up to the sleep deprivation he experienced while in the hospital during his two-week gig, and reveled in the sight of him deep in slumber on the sofa (king that he is . . .).
Then Tuesday came, he said he's feeling very weak, light-headed, lethargic. We had an appointment with his oncologist in the afternoon, so I called his cardiologist office, hoping to piggy-back an appointment either before or after the oncologist, as I was thinking this may be more of a cardiology issue than anything. His cardiologist wasn't in but his nurse said it sounded like Bob should be admitted, and that maybe his oncologist would do that. If not, we were to come into the cardiovascular clinic right away the next day and she'd make sure to get us in.
We met with Bob's oncologist in the afternoon; not much he could tell us on his end. He said there's not a whole lot more he can do for Bob (as if he's done much of anything other than damn near kill him with chemo . . . no, no, no, I have to push that train of thought out of my mind. Not his fault. Not his fault. Not his fault. . . Funny, how in tragedy, we often try to find, need to find someone to blame. As though by channeling our crazy, wild, out-of-control anger, grief, sadness, frustration, insanity full force onto one source, one cause, that will somehow help. It doesn't, I'm here to tell you. Don't know what the alternative is yet, just know that blame is ugly, corrosive, counter-productive and takes precious energy from things that need it more . . .breathe in, breathe out, move on. . . ).
Bob's oncologist said that he needs to fully recover from this latest heart incident and then needs to carefully weigh all the risks and benefits of treating the tumor by talking to all the parties involved: cardiology, orthopedic oncology, etc. Surgery is fraught with risks, long-term, life-altering effects . . . no surgery is fraught with a whole other set of issues I can't even begin to process right now . . .
We told him about Bob's recent-developing weakness, fatigue, diarrhea, sodium/Lasix issues, thrush infection on his tongue, more weight loss (back down to 105, dammit all to hell . . .), etc. Bob's vitals seemed okay, somewhat lowered blood pressure—89/57—but he's on heart meds, so that's to be expected. Doc S said those were really cardiology issues. I suggested hosptialization; Bob said he didn't want to be hospitalized (don't blame him, fresh off a two-week gig), that we have a cardiology appt. in the a.m., and he could wait to see what they say. We were sent on our merry way with instructions to revisit oncology when the heart issue is better under control.
This morning, despite a good night's sleep, Bob is very weak, can barely sit up, much less stand, is dizzy and nearly falls over when trying to make it from the couch to the bathroom to wash up and change clothes before our appointment. I encourage him to eat a little something for breakfast, take his meds and then we're off, down 94 for the umteenmillionth time. Effining construction slows our commute to a 45 minute drive, though we still arrive at the U at just after 8. Upon arrival in the clinic, Bob's cardiologist's nurse meets us in the reception room and tells us, "Just so you know, Doc B is probably going to have Bob admitted, given what you've told us is going on, and his most recent cardiac incident." ER admission is what happens when your blood pressure is 59/43 and you weigh 105 lbs.. . .
Doc B says ER is a quick way to get IV fluids and other things going quickly without having to wait around for a room in the hospital. IV was started in the ER, and about an hour later, Bob was wheeled up to ICU, as his blood pressure continued to wallow in those dangerously low numbers. An echo was done once again to see if a poorly functioning heart was causing the low bp. After reading the results, we're told that gratefully, Bob's heart appears to be functioning well since the last heart attack, improving all the time. The low bp is due to severe dehydration, likely caused by all the crazy shit going on, literally and figuratively. Severe diarrhea from the round of antibiotics over the past two weeks, use of Lasix for the water retention, Bob's inability to eat much because of the thrush covering his tongue (which is very painful and makes even drinking extremely uncomfortable). . .
See, peeps, once again, it's shit like this that, drives me out of my freaking mind . . . Yes, in hindsight it's all perfectly clear, but why the hell can't someone (i.e. other than me and his parents) look at Bob for the whole picture that he is, that all of this shit is totally, completely inextricable from each other . . . we mentioned back in the hospital, numerous times, about the diarrhea, about the water weight/retention, about the poor appetite . . . I am not a doctor, nor do I play one on TV but it's been shown time and time again that I have to be with Bob at all times, document, take notes of anything and everything that's going on with him and tell his doctors, over and over and over . . . do something about this!!!!
Spent the day telling docs over and over about the diarrhea, the thrush (which has lingered since his March heart attack), the water retention/Lasix . . . told them how alarmed I am, once again, at the severe weight loss (Do you want a dietitian to come in? we're asked. Again. NO! We KNOW what he needs to eat—he can't, because of the fungal infection covering the inside of his mouth! It's raw and burning and the medication he was given for home isn't doing the trick!)
Long story short, I've given my official "medical leave of absence" from work today. Right now, my full time job is caring for Bob.
maybe time to try rochester? (which comes with its own set of issues, getting Bob there safely/your away from home/hotel expenses/dogs/etc) Im sure you have went over all this in your mind already and I cant imagine how maddening it all is for you both.I just wish there was a superman Doc who would be the lead doc and cordinate everything! Shari
ReplyDeleteGlad to hear about some improvement but sorry to hear about the setbacks also! Thinking of you both and hoping for the best.
ReplyDeleteGood for you Jen!
ReplyDeleteTake care of Bob and you.
Please let me know what you need anything!
Lots of prayers and here's that pixie dust you tried to give me :-) You need it way more
x0x0x0x
-Jodi
Jen & Bob, Just know how much you are LOVED!! There is a God out here, I promise you... He knows. He is There, and He is Listening. Please, dear Jen, it may make no sense to us in our human form, yet we have no choice but to trust... in the incomprehensible right now. It's the only way. We must. Trust. It's what I'm doing right this very minute, as it's all that makes sense of the nonsensical, you know?
ReplyDeleteSo much love to you both...
HUGE HUGS, PIXIE DUST, LOVE, AND, Most Important, God's Blessings & Peace,
Mo
They have a place down here that advertises on AM radio. Cancer Treatment Centers of America. http://www.cancercenter.com/ Maybe you could research that too. You guys are so loved. I was listening to the Glee soundtrack and heard "Don't Stop Believing" I think it should be Bob's battle theme. I believe!! He is a super hero to me for everything he's been through so far. Hugs for the deep and very hot south!
ReplyDeleteDear Nenni and Bubo,
ReplyDeleteWe love you two to the moon and back a million times around again, and won't ever stop believing in you two.
I'll call you tomorrow to stop by and visit you two and the hospital. Please send our love and hugs to Bob and tell him there's not a day that goes by when we don't send off our masses of prayers and strength and love to him and you.
xoxoxoxo
Jilly, Jade, and Amelia