So, I get a call at work from Gracee today….
“Mom, I think we have a problem”
“I think I have lice”
Is this some kind of cruel joke? Seriously. Lice’s timing, is about as convenient as Cancers. It’s the day before Gracee’s 14th birthday and I come home from work to confirm lice on her head. I guess we count ourselves fortunate, because we’ve never had this experience. AND, since I haven’t planned anything for her birthday yet, we don’t have to cancel anything. Hey, we’re batting 1,000. Let’s just hope Gracee’s not into reading this blog. That 1,000 would dwindle to 0 in no time flat.
I’d like to tell it to go away and come back… never, as if Cancer considers it’s timing. I have had winters of discontent, and this has most definitely been a summer of discontent. In addition to maintaining a full time job, taking on two extra teaching assignments this summer and taking my last set of scheduled courses toward a Doctorate degree, we’ve also been managing this new thing.
In some ways the extra work is a welcome distraction. Unfortunately, I’m not doing a very good job of anything right now.
Each day is a new day and every day I wake up determined to take today for what it is. However, at times, the stress has felt unbearable. I bark at my children, I’m frustrated at work, and every other word coming out of my mouth sounds like a swear word. Nothing feels productive and yet, I’m busy all the time.
It’s a very strange dissonance to know I should have some sort of ‘feelings’ about this and have neither the time nor the inclination to ponder this concept. I wonder if there is a part of me who thinks if I’m not emotionally impacted, then maybe it isn’t really happening.
Over the past few weeks I’ve started a list of stupid questions people ask me. I can’t help but to share these questions with those who might be interested…
at 3am in the morning on the phone with the advice nurse;
“do you have a blood pressure cuff?”… ummm, what do I say?
“Am I supposed to have a blood pressure cuff? Is this a standard medical thing one own’s like a thermometer? Would I know how to use one if I had one?”.
How about this one at 4am in the morning on the phone with the advice nurse,
“do you have any prune juice?”
How old do you think I am??? I’m NOT even 50 yet, why would I keep prune juice on hand? NO, but we do have a 24 hour open walmart close by, “could you hold for 20 minutes while I go get some?”.
“Did he smoke?” I don’t give a shit if he smoked or not. Half the people out there with lung cancer never smoked.
How about this question to John (from medical providers). “Do you have any pain?”… I can see the naughty glint in his eye when he’s asked this question and I know how he wants to respond, “Let’s see, I have cancer. I’m getting chemo. I’m almost 50 years old… when am I NOT in pain dumbass?”.
It’s felt like John has been in a boxing ring all weekend, and everything he’s ever learned about boxing has been through word of mouth. You know how people say, “it’s like this….” and “here are the potential side effects…”. And you listen and nod your head. But, you don’t really “GET IT” until you go through it? Well, we are now seasoned post chemo warriors.
It’s Monday and we are sitting in the doctor’s office. I have counted the amount of hours we have spent in medical facilities over the past 6 days and I total 24 (!).
In addition to the extreme pain, discomfort, 3 sleepless nights and nausea, John has also been experiencing dehydration. He became so weak and light-headed early Saturday morning, he earned a trip to the ER by way of our local EMT’s and ambulance. Passing out in the bathroom was not on the agenda for the day and I reached my threshold for WTF is going on when he went down a second time on his way back from the bathroom.
Saturday, he spent 8 hours in the ER as they juiced him back up with 5 liters of saline solution. With a dangerously low blood pressure, I felt relieved to have someone with more experience and skill keeping an eye on him for a while. They ‘threatened’ to keep him overnight as he showed small improvements throughout the day. I swear he willed his blood pressure back up and that short successful walk around the nursing station, which subsequently supported his discharge.
On Sunday, I asked him if he’d like to join me and our dog, Lucy for a quick walk. We journeyed across the street to the park and back. He’s so weak, nauseated and in pain. Throughout the night, he took another nosedive, ending up mildly dehydrated again; resulting in another sleepless night with phone calls to the advice nurse and an appointment for fluid with the doctor on Monday. As I sit in the doctors office on Monday I think about how tired I feel, and I wonder about his level of exhaustion. It’s only been two short weeks from when we learned about his diagnosis. Not only are we still reeling from this news, but we are in the thick of it. I don’t really let myself feel much these days and when I do it feels heavy, sticky, thick and overwhelming. It sucks. Just like cancer.
It’s the day after round 1 of chemo and we’re back in the hospital. A very different part of the hospital. Actually, it’s an entirely different hospital and this time, John will endure his second bronchoscopy since this ordeal started. The first bronchoscopy was done because his CT scan showed ‘a spot’. The pulmonologist related two different concerns; one being an autoimmune issue and other being a fungal pneumonia. We’ll take the lesser of the two evils, please. Imagine our shock when the results came back negative for neither and positive for cancer. What the hell?? We then learned that the sample was so small that they really can’t tell us much; except to say it’s lung cancer.
In our three hour initial meeting with the oncologist, he relates a diagnosis of stage IV lung cancer. This is based on the little sample that was found in the initial bronchoscopy and through a PET scan that shows a spot on John’s lung, fluid in the lung, a spot under his right arm, a spot on his right pelvis and one more on his C1 vertebrae. At this point, his oncologist relates limited treatment options given the limited information. He recommends chemotherapy and taking a biopsy from the spot under John’s arm so we can find out the cancer type and molecular structure, and to potentially expand the treatment options.
We’re simultaneously surprised and puzzled when the biopsy under his arm comes back negative for any cancer. Hmmmmm. Thus, the second bronchoscopy.
John is pretty funny when he’s pre and post op. A little loopy and quite talkative. After the procedure, the surgeon gives us the thumbs up letting me know John was cracking jokes during the entire operation (of which he has no memory). When the Dr. asks him how many samples he should take from the lung, John recommends 9 (?). The Dr, thinks 8 is plenty and calls it good.
John’s also a medical trooper, enduring 7 hours of chemotherapy one day and an outpatient ~ yet invasive ~ procedure the next. Yet, I don’t really understand what kind of amazing trooper he is until this weekend.
On the hottest day of the year, I accompanied my partner to his first round of chemo. It was only 10 short days ago when we spent 3 hours with an oncologist and the oncology nurse learning about John’s diagnosis of lung cancer. There’s still questions as to what stage and exactly what type of cancer he has. But, it is cancer. So, here we sit, waiting for the nurse to start his IV. There are 18-20 chemo stations with a comfy chair for the patient receiving cancer and a not so comfy chair for their caregiver, a tv, snacks, a refrigerator, and many chemo pods come with a window view. Of the parking lot.
I lean up against the window, feeling the heat, so I check my phone for the weather, realizing it’s the hottest day on record so far. This will definitely make rehabbing from chemo that much more comfortable in my un air conditioned home. Do I sound a bit sarcastic and cynical? Yes, I’m just not feeling the love these days. The enormity of cancer is hitting me full force as the nurse explains the process and schedule for the day and the side effects of chemo. I look around the room and see at least a dozen other people receiving chemo. I hiss at the woman who chooses to sit in the pod next to ours and the first thing out of her mouth is, “I thought I was going to have a private room?”. Welcome to cancer hell, lady. Apparently, cancer knows no bounds and if this isn’t a lesson you’ve already learned, now is the time.
I realize that I may be talking to this other lady, but I may as well be talking to myself as well. In a matter of seconds, my life has changed. John had been ill for several months. His doctor thought he had pneumonia and prescribed three separate rounds of antibiotics before John insisted on different tests. A CT scan showed ‘something’ while the initial bronchoscopy diagnosed the cancer. Again, we don’t have a clear stage or type yet, so a second bronchoscopy is scheduled for tomorrow.
I come back to the nurse who is patiently explaining todays process. He and John chat about hiking and fishing between the medical jargon. I look around and can feel the sick in the air. John is the youngest patient here and clearly the most healthy looking. I can’t wait to go home and take a shower. I know I can’t catch it, but I need to get the sick off me. Maybe I will wake up and this will all be a bad dream? This is my wish as I spend the day looking out the window.