Sometimes life just interrupts your cancer journey and what a welcome interruption that is!
First you have to deal with the business at hand… Cycle 2. When you get to the treatment center, you first have to get bloods drawn. You have to be reasonably healthy in order for them to pump you full of the magical voodoo juice for hours on end. If your counts are too low, the cycle can be delayed ‘til they’re up again. You pray that this process will go not one second longer than necessary with no delays. So you are literally on pins and needles until you get the go ahead for your round to begin.
Once seated in your reclining chair, you have some time to get yourself settled. The nurse comes by and with you reviews your complaints and successes since last you sat here. Your vitals are taken and saline bags are set up on the pole. This is the point when you’re glad you have a medi-port. Not only does it leave your hands free for this long day, but it’s less painful when the needle goes in and less bruised afterwards. Before you go to the center, you cover the port site with a thick layer of Emla cream and by the time you’re being stuck, the cream has numbed the area. Even so, there is less fiddling and it’s more straightforward. Definitely an improvement.
You’re asked to spell your name and give your birthdate each time a medication is given to you. Sometimes there are some pre-infusion pills, sometimes there are meds that are pushed through your IV with a syringe and sometimes other bags are added to your pole to mix with the saline. Some of the meds make you conk out for a while. Sometimes they ask you to spell your name while you are under their spell. Then your answer could be something like Rich’s in Cycle 1…. “D…e…t…o..m…m…n….n…..n….a………s…….o…..r…………….., R…i….t…..c…..h…….a…r……d…………………..t” followed by a very sappy and very pleased grin. The nurses dutifully write all this down then scurry back a few minutes later to verify the information. Sometimes they ask you to spell your name a little later in the process as the rest of the medications are added in. Then the response could be something like Rich’s in Cycle 2…. “snork (drool)” He repeated that one twice until they realized there was going to be no sense coming from our sleeping beauty! Apparently timing is everything. A combination of Benedryl and Ativan knock you out for at least three hours.
It’s important for someone to be with you even if you are sleeping through most of it. While you’re snoring away, someone has to spell your name and check that the medications are what they should be. When you aren’t sleeping, and on our second day of the infusions there’s no Benedryl so generally more alertness, there are still times when you need someone to advocate for you. The nurses are wonderful, caring and attentive people… angels in scrubs. But they don’t know you like family and friends. They don’t detect those slight alterations to your demeanor that signal distress. They don’t/can’t spend the entire day by your side. And much as we trust them, mistakes can be made. And if you’re a happy, drooling, snorking patient, you won’t notice. Your caregiver has to be prepared to question, demand, oversee and advocate for you. During Rich’s second cycle one of his meds was given in a quick six minute push instead of as a four hour long infusion. It was the first day the new part of the treatment center was open, everyone was a bit discombobulated and that threw us off as well. Lesson learned… gotta be more vigilant. Our oncologist’s nurse says an investigation needs to be done as to why that happened. We move forward and decide each cycle we’ll discuss all meds and modalities before any bags are hung on the pole. There are ramifications that can’t be taken for granted.
The day can be long. Sleeping does shorten it for the patient but you are glad that you have TV, magazines, that you have your faithful travel Scrabble; your phone is filled with ebooks. The lunch you have with you helps the time pass as well. Snacks are readily available. Nurses stop by during the day not only to check your vitals and mark the progress of the drips, but also to see how you’re doing. Not just your nurse of the day, but there is a family feel to the center and nurses who have treated you before stop in to say hello. The time passes.
At the end of the day, you’re given your discharge papers with instructions for continued care at home.
You’re tired… though you’ve slept, you’re still tired. Sometimes the prednisone gives you a boost of adrenaline and, like Rich this last cycle, you come home and decide to do some yard work. Sometimes the same drug depresses your adrenals and you just crawl into your recliner and check out for a while. Sometimes it’s a very odd combination of both.
Twenty-four to forty-eight hours later, you have to get an injection to boost your white cells. Rich and I learned how to do it so that we can administer the shots at home. It will be three weeks before we need to go solo so there’s time to get used to that idea. Rich was hoping to reenact Nicholas Cage’s moment from The Rock where he injects himself, but apparently this medication is given subcutaneously so that won’t be happening. Maybe we’ll give him a couple of green flares to pose with instead… or at least a coupla sparklers.
And now the non-patient time begins… a day of appointments halfway through to the next to monitor progress and health, but otherwise, the routine of controlling the side effects starts anew. Getting the infusions is most times the easy part… it’s the in-between that is the harder.
When you have friends and family gathering to celebrate life events, it’s also a joyous time. This cycle in particular will be a busy time for us. We welcomed our family home to congratulate Nick on his graduation from Cooper Union and introduce our newest grandson to all the angels in our life. It was a hectic but wonderful weekend as our house was full to bursting. Rich pushed himself to be a part of everything, taking a rest when the energy ran out. With a three day weekend, there was time enough to take it easy when everyone was gone. Wednesday we’ll proudly be in the audience at Cooper‘s Great Hall to watch our graduate walk for his diploma. The next two weeks the task at hand will be to gather strength and reserves to then go to Rochester for Richard and Noelle’s wedding where once again, we’ll celebrate our family’s joy with so many of the people who mean the most to us.
These moments carry us through from one cycle to the next. When pain and exhaustion take hold, and it does, the anticipation and the memories of these times lift us up and remind us of the importance of the community of loved ones around us. The combination of reminiscing about our life together and planning for the years yet to be fill the hours with love and gratitude for the times and the people who take this journey of life with us.