Patricia: “You mean you were diagnosed with something called a brain cloud and didn’t ask for a second opinion?”
We always thought it was funny when, in “Joe vs the Volcano,” Tom Hanks’ character is diagnosed with a brain cloud. And Patricia’s response above to Joe jumping into a volcano to appease the volcano gods because he’s got a brain cloud certainly mimics our thoughts. Really? You’d just accept that diagnosis?
It should then come as no surprise that when our son suggested that some of Rich’s balance issues might be ear crystals, we thought it was a joke. Ear crystals… you mean, like a brain cloud? But who knew… it’s a real thing. A few google searches and, yep, loose crystals in your head will make you dizzy. The crystals, of course, have the Latin name otoconia. Because doctors really can’t tell you that you have loose crystals. Not if they wanna be taken seriously.
Benign paroxysmal positional vertigo, or BPPV, is the condition whereby these crystals of calcium come loose in your inner ear and travel where they shouldn’t be. When they are displaced, they disrupt the flow of the fluid in your ear canal that acts as your personal gyroscope. Your brain gets the wrong signals and you feel like you’re falling. Our next step is to get a consult with an ENT to see if this is indeed one of the causes of Rich’s balance issues.
The other nemesis is the continued neuropathy. Without the feedback from the bottom of his feet, his brain, even though he may see a step or a curb, refuses to believe it’s there. Kinda like… a brain cloud? Nah. But it has been the culprit in a number of stumbles, the latest just as we went for our regular follow-ups with the stem cell doctor, pulmonary doctor, blood cultures and port flush. The idea is to use his cane to tell his brain that there is a step down. If he forgets to move his cane down first but instead moves it with his foot, the message never gets where it needs to go. Thankfully, no damage done this time with the exception of a couple of hearts beating a little faster.
Our team gives us good news that we’re on the right track. Lungs clear, bloodwork looking good. We’re now…. drum roll…. off of all prednisone! For two weeks, we have been steroid free. Even the Budesonide nebulizer is a thing of the past. The pulmonary doctor is pleased. Any effect on the lungs from being off these meds would manifest by now. All is good. The previous weekend for Father’s Day and Rich’s birthday, the kids could see the old energy coming back. Rich’s prednisone brain cloud was lifting. There are still many naps during the day, but there is a connection with those around him that’s been missing for some time. It’s good to see. Life is good. Til 3am. Then Rich wakes up with chills, slight temp, aches and a bit of a wheeze. Was that stumble in the parking lot more than the neuropathy? Was it, like in January, an indicator of a brewing infection?
Tylenol for fever and aches, Budesonide and all its nebulizer friends are back on board.
We avoid calling the on-call doctors… we know they will recommend going to the ER even though Rich’s temp is below the “gotta go” levels. We opt for a wait and see. Temps taken every half hour. Monitor the highs and lows.
The next morning, we repeat the nebulizers and continue to monitor temps. I wait to see which direction his fevers and breathing will go before I leave for work. Once again it seems overwhelming. The possibility of going back to pneumonia after three months of lung health, after weaning off the prednisone and its demons, is hard to swallow. We talk to the doctors who also would like to keep him out of the germ ridden ER. They also opt for the wait and see.
When I get home from work at the end of the day, Rich is tired. He sounds tired, looks tired. Whatever is going on is knocking him for a loop. His breathing is slightly worse. We wait.
This morning, Rich wakes and his breathing is considerably worse. Back again are the whistles, crackles, wheezes …the symphony of a respiratory infection. We continue with our meds regimen while we wait for our general practitioner’s office to open. She’s not happy with what she hears in his lungs and, armed with a stack of prescriptions, we’re also sent off to get chest x-rays and admonished to call if anything goes downhill and to call our stem and pulmo doctor on Monday. Reprieve! We even negotiated and won to get a quasi- prednisone instead of the full bore demon.
As we’ve traveled on this journey, we have, with few exceptions, taken the setbacks in stride and looked for best solutions to get us back on track. Reset our goals and forge ahead. But yesterday morning was a tough one for both of us. Our renewed optimism on getting off prednisone, and getting some quality of life back was pulled out from under us and, like Joe Banks, I think we were both ready to jump into a volcano. Too much bad deja vu. Magic finger beds are not any fun when they are caused by fevers. We are so DONE with this. For heaven’s sake, we JUST LEFT TWO DOCTORS’ OFFICES WITH A CLEAN BILL OF HEALTH!
While Rich finally slept and I waited for the next time to take his vitals, I sat and cried. Good and hard. For a good long time. How wonderfully cleansing and empowering it was. I have said before how healing a good cry is, and that one, boy oh boy, that was certainly f*cking good medicine. This morning, I was stronger and ready to deal with whatever the health gods had in store for us. We’ve found that we don’t like to give in to pity, but that it is important to recognize when the senselessness of some of all this becomes too much. You just have to take the time to, in whatever way works for you, work through it. It’s fine to compartmentalize to get through the moment of whatever comes at you, but at some point in time even the best organized psyche needs its closets cleaned. How each person does, is a very individual thing, but those gut wrenching sobs did the job for me. It gave me the strength to deal with whatever prognosis came at us today. I was able to say, like our movie pal Joe Banks, “Dear God, whose name I do not know – thank you for my life. I forgot how BIG… thank you. Thank you for my life.”
Rich has been sweating toxins out and with fingers crossed, we see some slight improvement. For now, the doctor informs us, we’ve dodged pneumonia. We’re both ready for getting past this hurdle and once again bring back that energy spark we saw last weekend.
At a significant point in this movie that on the surface seems so silly but ultimately is a fable full of wonder, Patricia says, “Joe – nobody knows anything. We’ll take this leap, and we’ll see. We’ll jump, and we’ll see. That’s life.”
Yep. We’ll see! Bring on the volcanoes…. we’ve got the shirts.