No Pain is No Pain, but This Wasn't It

People ask how Darling is doing after the surgery to remove the breast cancer. Now, almost six weeks later, the pain is under control and she’s doing well. Those who know her also know more of the story.

The double mastectomy was November 30, 2011. Darling made the decision for a double mastectomy because she was afraid the cancer would attack her again. There wasn’t enough family medical history for her to make a genealogical decision. Turns out her older brother knew that their maternal grandmother died of breast cancer when Darling was very young, so at least that’s some information. Darling’s decision was probably a good one.

Before I go any further, let me say that MD Anderson is a fantastic hospital, with incredible professionals who really know about cancer. From October to the surgery in November, each department was thorough in examination, analysis and execution. We had, and have, utter confidence in their abilities.

The Story

It’s November 30, 2011. Thanksgiving is over. We are at MD Anderson hospital to eradicate the cancer that attacks Darling. The double mastectomy is done as outpatient. That’s a little surprising, isn’t it? I suppose it has something to do with insurance, and after seeing charges amounting to more than $100K, I’m not surprised that insurance might be trying to minimize the costs. Darling and I don’t know how people in this circumstance manage without insurance.

Since it was outpatient, we have twenty-three hours to leave the hospital once we are put into a recovery room, which is about nine o’clock in the evening of the thirtieth. They instruct me how to care for the four drain tubes installed beneath Darling’s ribs. So the next evening, even though Darling is in pain, we go home. We figure she can be in pain at home as easily as in the hospital. That is Thursday night. Things get a little blurry after that.

Darling has a SCOPOLAMINE patch behind her ear to control nausea, put there by the surgeon. The patches last up to three days. That’s important to the rest of the story.

We’re home on Thursday night and Darling is sick. She’s in a lot of pain, and we keep renewing the pain medications as often as possible. The nurses told us she could have Tylenol™ between the allowed times for Norco™. On Friday about noon she takes a Tylenol PM™ and sleeps fitfully for a few hours in the afternoon.

Darling has a lot of lovely, loving friends. One visits while she’s sleeping, bringing a smoothie drink. I taste it, of course. It’s delicious.

After she awakes, on Friday afternoon, JBR visits. JBR is one of our best friends, and her husband TR is a great guy. JBR is a published poet and a blessing to everyone who knows her. Like Darling. No wonder they are such good friends.

MD Anderson calls and asks how Darling is doing. She mentions that after a PM she had a few hours of good sleep. The Doctor tells her we need to go to MD Anderson Hospital, to the Emergency Center because of the PM medicine. She’s not allowed to take Tylenol™ with the pain killer they prescribed. It can cause her liver to shut down. I’m angry. I’m not sure why, exactly, but I am. I’m growling and saying we aren’t going to MD Anderson, certainly not to any EC (for some reason I’d rather use the term ER, but that seems to be reserved for television). If it really is an emergency, I should go down the street to the hospital five minutes away. So I’m growling, but I’m putting my travel clothes on. It’s cold outside, and I help Darling walk slowly to the car. JBR puts her own warm wrap around Darling’s shoulders and asks me to please take her to MD Anderson.

We’re driving toward downtown and Darling is on her cell phone with another doctor from MD Anderson. If it was just the one PM we don’t need to come in, he says. I turn around and go home. Darling is still in a lot of pain, and this doesn’t help any.

I’m calmer when T&D come over. They’ve been friends since Darling was very young, and they are worried about her. They bring a movie and some popcorn. About nine o’clock we’re measuring the output from the four drains when nausea hits her. D comes and helps, but Darling is throwing up. After a while she’s only trying to throw up. The pain is racking her body with each spasm.

Remember I mentioned that the Scopolamine patch only lasts three days? We’re at the tail end of the third day at this point.

We try everything to ease her pain and nausea. Cool, wet cloth on her forehead. Over the counter nausea medicine comes right back up. Crackers don’t stay down. Water doesn’t help.

I take her to Emergency at the hospital closest to us, only minutes away. Her youngest daughter AK goes with us, along with AK’s husband. Because Darling is throwing up and in so much pain it only takes about an hour to get her in a room. Even with an ultrasound to guide them the medical people can’t find a vein to use for an IV, so they aren’t able to get any medicines in her. “Intramuscular takes too long,” they say. It’s a phrase I become very familiar with. After trying both arms and both hands, they finally stick her in a vein in her neck. Her neck! They finally give her some pain medication and anti-nausea medicine.

I take the kids home about two. I come back and Darling and I are there until a little after three AM, after they rehydrate her through the IV in her neck. It’s a result of the anesthetics they gave her during surgery, they say, and send us home with a couple prescriptions for anti-nausea medicine. One prescription is for suppositories. One of the medical guys hands me a box of rubber gloves as I leave.

Saturday she’s exhausted. The pain mounts. I can’t get her to eat. She barely drinks. By Sunday night she’s in so much pain that she can’t even talk, just sit and rock back and forth, back and forth. She’s in pajamas but I bundle her up and go to the MD Anderson Emergency Center. At least I thought it was the right place. MD Anderson is a huge complex, covering city blocks in downtown Houston. The sign which points to their Emergency Center is about the size of a postage stamp slapped on something the size of a street sign. You don’t see it because half a block away a blinking neon sign the size of the Goodyear blimp flashes “Emergency Center.” Guess which one I went to?

I hop out of the car and leave the keys in it. I don’t care. I grab a wheelchair from inside the door and get Darling and wheel her in. They have no record of Darling in the database. I coax her patient number from her twice as she sits in the wheelchair, rocking, rocking. I say there must be some mistake. The young woman at the computer terminal says “We have no record of her here at St. Luke’s.”

Click.

I explain I need MD Anderson. A very nice young man says it’s right next door, just follow him, which I do, at a trot, through the cold, pushing Darling in the wheelchair. We get there and I check every box in the admittance form. Chest pain? Yes. Head pain? Yes. Leg pain? Yes. I don’t care. There’s plenty of pain. Every box. Check. Check. Check. The young man brings my car to me. I quickly drop it off at the valet at MD Anderson, then hustle back to the EC. I’m not sure if Darling even notices I’m gone. She’s just rocking, rocking, tears now coursing down her face.

They call us and take her into a small room to get her vital signs. “Hey,” says one lady. “We’ve been here a long time. He’s in pain too.” She points to an older man sitting in a wheelchair next to her. He looks in pain. The room is crowded with people, and everyone looks in pain, even the people who brought them in, like me.

“You’re right.” I look right at her and try to acknowledge the unfairness of the situation. “I think we’re all in pain. We should all get morphine!” The sweep of my arm encompasses the entire room, then I’m right behind Darling as the nurse takes her pulse from her ankle. She can barely move her arms, and I tell the nurses to watch out for the tubes sticking from her sides.

Darling is rocking, rocking, and tears are falling.

“What’s your pain level, from one to ten, with one being no pain and ten being the most?” The nurse is looking at her.

“She can’t answer you,” I growl. “She’s in pain. Put down ten.”

They get her vitals and we wheel back into the waiting area. So we’re just part of the incoming crowd now.

We’re there for a long time. About ten o’clock they announce that they are closing the EC and everyone is moving upstairs.

“Please can I get something for her pain?” I’m begging now, and I don’t really care.

“We can’t do that until we get her in a room and get an IV into her. That way it works fast.” That’s the standard response. I don’t care about fast at this point. I just want something. It’s been hours of rocking and crying. Darling is tough, but this is more than even she can stand.

“Please. Something? Anything?” I get the same response.

We’re in a new waiting room and I just sit facing Darling, trying my best to comfort her. I’m not sure she can even hear me. She’s just rocking, rocking, with tears running down her cheeks.

I don’t know how long it is before they call her name, but it is after they call the lady who objected earlier. They wheel Darling into a room, get her in the bed and just leave us there. “Someone will be with you shortly.” I dim the lights and now Darling is just lying in the bed, her foot moving rapidly, crying. Now she can’t even rock.

I go to the nurse’s station, to a guy wearing one of those surgeon shirts, the kind all the cool doctors wear on television. He also has on a white coat, but I don’t think that means anything here. “Look,” I begin, “I know y’all are really busy, and I don’t mean to be telling you your jobs, but my wife is in a lot of pain, has been for hours. She can’t even talk she’s hurting so much. Can’t someone, anyone, please give her something for pain.”

“We need to get an IV in her,” he begins.

“No, I know. I’ve heard that. But even intramuscular would do something for her pain, and since we’ve been here for hours, it would have already started working.” I look in his eyes. “Please,” I beg. “She needs something now.”

“I’ll see what I can do,” and he turns and walks away.

I go back to the room and sit in the chair. I don’t know if I was just blown off or not.

A few minutes later a nurse comes in and turns the light on, then checks Darling’s arms. A few minutes more and she puts an IV in the back of Darling’s right hand, taped firmly in place. They put a shot of morphine in the IV and I can see Darling relax, her foot slowly stops moving. The tears finally stop. Her breathing slows.

I don’t know what time that was. I don’t remember the rest of the night. At some point I transform the chair into a bed and lay down. A nurse brings me a blanket and pillow. I’m half asleep until early morning, when a pain doctor comes in.

“You went home too early,” he says, looking at her chart. “About five to ten percent of women who get mastectomies suffer from more than just physical pain, they suffer from nerve pain too. That seems to be the case here.” He’s a pain doctor, he explains.

Whatever it takes, we need to get the pain under control. He assigns us to a real room and we stay a few days while he and the other pain doctors figure out what Darling needs to take to mitigate the pain.

I’m willing to find a nurse to come and stay with Darling. I don’t want to go back to work. I want to be there. I just don’t want to fail any more at keeping her pain-free, at helping her to optimize her healing. I failed enough.

Present Time

So we’re six weeks or so after the surgery and the pain medication regimen works well. We had a few rough spots trying to get Scopolamine patches for her; for some reason they don’t like to prescribe those, and even with a prescription they are hard to find. Bless the people at the pharmacy. For a few weeks there I conversed with them more than I talked to anyone but Darling.

Friends brought food. Then more food. Darling wasn’t always eating but the food disappeared anyway. I don’t know why my clothes are all tight on me.