Remember when you were pregnant with your first child? Think back, just a few years ago or way back for many of us. Remember packing that hospital bag in preparation? Remember heading to the hospital for multiple doctor appointments, scans, ultra-sounds, bloodwork, and possible false alarms? Remember when you brought that beautiful warm bundle home for the first time, overwhelmed with emotions and scared at the thought that you have no idea what to do or what you have gotten yourself into? Remember all the sleepless nights and the fatigue you felt everyday just trying to get the loads of laundry done, house cleaned, bills paid?
Remember all the extras that came with this new life; creams, ointments, diapers, clothing, toys, bottles, etc. Each of these items filling up your home, overwhelming your emotions, cluttering up your life. Basically, every day was about finding something that felt comfortable, regular, or routine in a life that looked nothing like the life you knew as normal. This new “normal” kind-of sucked but was also really great. You knew it would only be temporary and you had this beautiful new human to care for. Even if they cried all night making you so sleep deprived you may have walked into the grocery store with no less than spit-up and poop on your shirt (yes, I am speaking from personal experience and just saying, it wasn’t pretty). All this crazy AND you still were excited for this chapter of your life. You looked forward to the sleepless nights because they lead to days of napping on the couch with baby. You enjoyed the naps and diapers, the spit up and laundrybecause you had a little life to watch grow with anticipation of what was to come.
Well, this cancer business is kind of like that…only the complete antithesis. The little bundle of joy is more like evil spawn. Although it leaves you feeling much of what you felt with a newborn, there is no joy, no happiness, no excitement of what else there is to come. Let me explain…
This cancer business does leave you exhausted as both caregiver and patient, though Kaycee’s fatigue is way past anything I am experiencing. His fatigue and exhaustion is bone numbing, muscle depleting, a complete shut-down of everything. It is considered it a good day, these days, if he gets in the shower. Most days are more like a repeating pattern of couch, bed, couch, bed, Chemo, couch, bed, with the occasional trip to the hospital for a few days to treat infection with a drain tube, couch, bed, Chemo, couch, bed…etc. The overnight bag you packed for the hospital, yeah, Kaycee has one packed, too. In fact, as I write this we are sitting in yet another waiting room waiting results of another CT scan and word from the doc about whether or not he will be admitted, again. His overnight bag, unfortunately doesn’t have a cute little snuggly outfit to bring baby home in though, just his stuff to feel a bit more normal in the hospital. This new “normal” is anything but normal. It comes with very bizarre “toys” and ointments, as well as a whole pharmacy of new meds and prescriptions to keep straight. This normal isn’t exciting. It is much like having a newborn terrifying, exhausting, emotionally draining, and a lot of hard work. But without the fun of having a new baby.
In fact, this new “normal” life comes with some of the same symptoms of a newborn life; laundry piling up, dogs ignored… waiting to be walked, kids left on their own as we speed off to the hospital, never-ending doctor visits, and multiple other families/friends making meals for you because there just isn’t enough time in the day to get it done. This life comes with overwhelming outpouring of love and support from community; friends, family, acquaintances, people we don’t even know all praying for us, sending good juju and thoughts, helping us with yard work, running errands, ferrying kids around, supporting us in their own way, etc., etc., etc. However, what this this life does not come with is the newborn; something to adore, hold, love and watch grow. This new life now rules our every waking and sleeping moment, it rules our very raw emotions, it rules us… and it is something I despise. I loathe it. It grew, unsuspectingly, for God only knows how long, making its presence known through a scan and additional tests, much like a pregnancy. But make no mistake, there was no joy in this announcement. This is not a good thing, not a happy thing, not something to celebrate.
This thing, this cancer, has made our house a very quiet place. There is no regular hum of cheer, laughter. The normalcy that we had grown comfortable with is gone. Instead, it is replaced with an often uncomfortable silence or hush because dad/Kaycee/he is sleeping. People don’t stop by quite as frequently, we don’t have any dinner parties, we rarely go out, if ever, going to the grocery store is a big deal and often a social ordeal filled with well-wishes and many questions from the concerned community.
We have learned to enjoy more movie nights. I have learned to enjoy writing, sharing the good, the bad and the ugly as a sort of thereapy. We have learned to cherish the moments when we are together as a family of four. Kaycee is learning that he HAS to slow down. This is not a mind-over-matter-type of situation. This is a your-body-needs-you-to-rest- and-will-fight-you-every-step-of-the-way situation. This new “normal” is teaching us to remember the good times and to look forward to healthier, easier, better times ahead with trepidatious anticipation.
So, although this is nothing like a first pregnancy it does has similarities. I find comfort remembering that we have already lived through a time when things were hard. When life seemed to be too much, too overwhelming and too exhausting to handle. I remember that we got through that together and we will get through this, too. It will not be easy, it will not happen fast, but I have faith that it will happen. I have hope that there will come a time in the future where we will sit together, healthy and comfortable, figuring out how to navigate another new “normal” life together and we will look at one another and say, “Remember when…”
And now the medical update:
Kaycee was admitted yesterday, after a persistent low-grade fever for four days following Chemo #2. He had another CT scan that indicating another infection was present. He will have a drain put in at some point today, 6-1-16, HAL 3.0- the evil spawn (sounds like a horror film). These drains are excruciatingly painful. Docs say that the placement of said drain is in the “most painful place” a drain can go, lucky Kaycee. But this drain is a neccesary evil to stave of any chance of further sepsis. When he has the drain, Kaycee walks like a 100 year old man, slow, deliberate, agonizing steps. Chemo will continue uninterrupted with his next session 6-8-16.