Sunday, July 27, 2008

The Week of Adverse Events. Alternative Title: Why Planning is Pointless

Last week's health management schedule was supposed to look something like this:

Monday: 1 p.m. appointment with oncologist -- routine
6 p.m. appointment for WinRho at hospital
Tuesday & Thursday: 6:15 p.m. PT for the shoulder
Friday: 6 p.m. Happy Hour at my house for my friends at work

Actual course of events:

Routine appointment with New Oncologist goes well. Following review of a recent CBC, we decide I should get an infusion of WinRho before my next chemo. Prior to showing up at her office, I had started taking some Neupogen injections because my white count was down to 1-point-next-to-nothing. I was now up to around 8. So, reconfirming here: WinRho, 6 p.m., hospital oncology wing. Then, I get to head home where I know My Love is making us a dinner of scallops, clams and steak.

I show up at the oncology wing as scheduled only to be told that my appointment had been cancelled and I am to come back the next day. I told them that my appointment had not been cancelled, showed them that there was no call in my cell phone archive and asked that they check again. They tell me my chart has been returned to the cancer center. I suggest a call to New Doctor. I am offered a seat. Thank you.

Twenty minutes later, I am in a room and waiting for a delivery of WinRho. So much for sitting down to a nice dinner with my boys when I got back from my 10-minute infusion. I call My Love and tell him not to hold dinner for me. About 20 minutes later, the WinRho arrives. A nurse administers the med then observes me for adverse reactions for 20 minutes and then sets me free to go home. Yippee!

I get home. My Love is ready to jump on the grill and prepare me my dinner. I go upstairs and change into more comfy attire. I come down the stairs and as I hit the last three steps, I am overcome with a sudden attack of shivers. I am freezing. I feel as if I have suddenly spiked a tremendous fever and start digging in my bag for my ever-handy thermometer. I pop it into my mouth, teeth chattering away so hard I'm afraid that I am about to bite right through it. I am expecting to see 104 degrees when it finally beeps that it has finished its assessment. It reads: 97.8.

By this time, I am on the couch with three blankets on me. I am hyperventilating. And I don't know why. I try to relax and give my body a chance to recover. My Love is unaware of my situation out at the grill. The kid is trying to finish his dinner while I am practically in convulsions and trying to slow my breathing.

When My Love comes in the house with my dinner, I tell him I can't eat it right now. He's confused and asks, "What, you're not hungry now?" I scream, "I don't feel well and I need five minutes!" This, seriously, is a lie. I don't know what I need. I'm freezing, and breathing raggedly and trying not to freak out The Kid. Good thing I screamed.

My Love is standing there. He asks what he can do. Should he call the doctor?

Yes. Call the doctor. This seems to be one of those times when it's ok to call the doctor after hours. So he does. Somehow, The Kid has been dismissed from the room and is apparently upstairs in his room. I don't know this for sure because I am buried on the couch, but The Kid and his whereabouts are what I am most concerned with right now.

My Love gets New Oncologist on the phone and describes our situation. New Oncologist asks to speak with me and after a few minutes of further discussion, she says she suspects that I am reacting to the WinRho and that I should go to the ER. I (don't be shocked, here) refuse. I ask her what on earth they can possibly offer me at the ER to get through this. She says Benadryl. I say, I have Benadryl in my house. How much do I take? She also advises Tylenol and an antibiotic. She asks if I have any antibiotics in the house. Please.

I send My Love to the cabinet with the phone and have him start reading off medicine labels to New Oncologist. They find an appropriate antibiotic which I take with Benadryl and Tylenol. I promise New Oncologist that if things do not improve, I will, indeed, go to the ER.

Within minutes, the shivering begins to lose intensity. I sit up and ask My Love where The Kid is. He tells me that he is upstairs. But, when I look toward the kitchen, I see him standing at the entrance to the dining room looking absolutely terrified.

I call him to me and he runs, tears pouring down his face into my arms. He is hysterical. I am still shivering uncontrollably and my breathing is rough. I hold him and tell him not to be scared. That I am having an allergic reaction to some medicine and just like when you get a big welt from a bee sting, my body is reacting. I tell him that I have taken medicine to fix the reaction and that I am already getting better. I am trying to ease his fears as best I can. And I am feeling awful that I have allowed this to happen in front of him. I tell him to sit on Daddy's lap and he does.

The three of us sit on the couch as I recover from my reaction. Now I am trying to figure out why I had the reaction. And I figure it out. My one and only previous infusion of WinRho occurred when I received two units of platelets and was already
pre-medicated with Benadryl, Tylenol and whatever other premeds are typically prescribed. This infusion was straight up. Next time... premeds. In the meantime, once I have settled down enough, I enjoy a late, but lovingly prepared dinner of scallops, clams and steak with my boys watching over me.

The next morning, I feel just fine and go off to work. My throat's a bit sore, but I attribute that to the hyperventilating I experienced the night before. As I go about my day, I realize that I should give myself a break and cancel my PT. This irks me, but I do it anyway. Another change of plans.

Wednesday my throat seems fine. Some yogurt and Kashi for breakfast and no pain or trouble swallowing. Then comes lunch. I pick up a sandwich: French roll with pesto, fresh mozzarella, and chicken. Yum! I eat about half my sandwich, realizing with each bite that something is not happy in my throat. Swallowing is difficult and I feel as though a hunk of bread has lodged itself in my chest. I can't clear it. Swallowing hurts a lot. So I call it lunch. In my office, I sit at my desk and try to will the pain away. I'm afraid to swallow and my mouth keeps watering. And even though I have mentioned pain as I write this, the concept hasn't entered my mind yet. Until I feel like I'm going to vomit. There's my flag! I need to be at the point of hurling to realize that I am, in fact, in pain.

So, off to the ladies room where I assault my throat a second time by bringing my lunch back up. This time with stomach acids! I notice that there are some rather large chunks of bread in the toilet and wonder if I even chew when I'm on prednisone.

I assess my situation standing over a toilet in the ladies room. I decide that this is probably a reaction to the CyberKnife therapy I just finished. I decide to call the CyberKnife folks so I tidy myself up and go back to my office to call them.

When I get them on the phone, I identify myself, my disease and the fact that I recently finished therapy with them, and tell them that I believe I am experiencing some adverse reactions and need to speak with a physician or nurse. I am placed on hold and then, in moments, am on the phone with the nurse. I explain all again and go into detail on my symptoms. I ask if what I am experiencing is consistent with CyberKnife therapy to my collar bone and neck. I am told -- no kidding -- we'd need to see you to assess you. I tell the nurse that that isn't possible as I am two hours away from her. I ask about side effects again and ask to speak to my physician. She tells me that my physician is not in today, but Other Doctor is covering. I suggest that perhaps I should be speaking with Other Doctor. She suggests I go to the ER.

I am tired of the nurse and tell her that that is precisely what I am going to do. And when I get there, a doctor will be calling her to ask her the very same questions I just asked and if she doesn't have any answers for said questions now, she'd better come up with them pretty fast.

I hang up the phone and find one of my good friends and confidantes to take me to the ER. This particular good friend turns out to be a great choice because he spent many years in hospital pr. I've got a pro on my side. So, despite protestations on my part to be dropped at the door, he parks, walks me in and tells them that I am having trouble breathing (true!). I am in triage in seconds and in a room in minutes.

I am given an EKG (normal), reiterate my symptoms, provide relevant history (oy), and am hooked up to a heart monitor. The doctor comes in and she is awesome. She listens respectfully and attentively to my relevant history and symptoms. She asks me questions and she lets me chime in with additional details that could help her suss out the problem.

For instance, she notes that my white count is now 16. That is high. She is looking at my oozing shoulder and wondering if I have some sort of infection going on. I tell her that I recently injected three Neupogens and suggest that I may be over-manufacturing. She considers the possibility. I'm being respected as a knowledgeable patient. I love her.

She is off to contact the Cyberknife folks and get me some pain relief. The latter comes in the form of a vile concoction of Maalox, Benadryl and, honest to goodness, lidocaine. Mouth-numbing, caustic-tasting (but pain killing) lidocaine. Relief lasts about an hour. Maybe I shouldn't have been drinking water, too.

My friend and I overhear the doctor speaking with the covering doctor at the CyberKnife facility. It's a bit of work, but we can hear her say, "She tried to call you." and "Is this consistent with potential side effects from the treatment?" (Hee Hee.)

This is really the end of the drama. I had called My Love after I got to my room and he left work to get The Kid from camp, up north and west of our home. That was supposed to be my job that day (another plan shot). He then headed back past our house south and east to relieve my friend from babysitting duty so he could get home for the evening. I think I got to the ER at 2:00 p.m. By the time My Love got there, it was after 6:00 p.m. I was still waiting around to get some update on my situation or discharge orders.

About 7:00 p.m., the doctor came back, told me she had spoken with the CyberKnife folks and that this, indeed, is likely a reaction to the therapy. Pain management is in order. She tells me the recipe for the vile concoction and writes me two scripts. One is for lidocaine, the other for a narcotic. Thank goodness because the vile concoction can only be consumed four times a day and provides limited relief. I take the narcotic that night when I get home after 9:00 p.m. I think I got four hours of sleep.

Come Thursday morning, things are much improved but still painful. I make myself a vile concoction at my desk. It works. I throw myself into work and love it. I also look at my Filo and see that I have PT scheduled for that evening. Sigh. I cancel PT for the second time that week. The week's plan lay before me tattered. Utterly shredded.

Except, there was Happy Hour on Friday. That, I can tell you all, came off splendidly.


Anonymous said...

Ugh. What a week, sista.

Tears for The Kid, but you handled it just fine.

Love the "patience" you displayed with the Cyberknife nurse. You got spark, kid!

And, yet, with all that you keep it all together to get your Friday night vino fix. You're a Goddess!!

Love you, L

Sarah said...

Thing One: Reread that part about how you were feeling guilty about "allowing" your reaction to happen. Please realize how INSANE you are.

Thing Two: I *so* expected to see a blackmail photo when I clicked on that last link.

Anonymous said...

Sorry you had a rough week. Quite a few set backs, but you will get on track again with your "norm". BIG hugs for the boy. Love you, Katie

Jamie said...

I'm sorry you had such a crap week woman!
Hugs and kisses to the little man!
Keep on keep'n on. You've got some serious strength that I hope to tap into soon!
love, love, love!

Anonymous said...

Please re-read Ralph's quote I sent to you.

Angel...kickin' in!!!!

I am soooo sorry Tracy.