It has been awhile since I have posted. I apologize for my silence; you can probably reason that it takes quite a bit to shut me up. And you would be right. But this paincation has been particularly brutal. And since misery loves company, have a seat and I’ll bring you up to speed.
So May was a wash and a bit of a traumatic month in the larger sense as I learned that Tamoxifen had stopped working and the lesion in L4 had progressed. I wasn’t too surprised, really. I had a nerve block in the beginning of May that felt good for about three or four days and then I was feeling that deep burning bone pain. A new plan superseded the old: force me into mentalpause with Lupron and change the anti-hormonal to Letrozole. Another reason for such an extended paincation can be laid at the feet of the insurance company. Two weeks for this, three weeks for that, “we need to contact your physician to conduct a peer-to-peer review.” This procedure denied; that procedure approved with exceptions. It’s shameful, really. Meanwhile I was in pain, but using my pain meds wisely.
June wasn’t any better. The insurance company denied the nerve ablation that was to take place at the beginning of the month. Twitter made it possible to highlight their inaction and after my tweet, I had an email address within five minutes and Cigna made it right. Doc Pain said it was the easiest peer-to-peer he’d even done. The folks at Cigna were actually quite nice and professional and all was fixed by week’s end. Public shaming. Maybe the Puritans were right about something after all.
But in the end it was too late to be effective. Because nerve ablations are done on a particular schedule in the office, the entire month of June was a wash; it wasn’t done until the last week in June. I begged my doctor to release me to work. In my heart of heart’s I knew I wasn’t up to it, he told me I wasn’t up to it but I protested. I went back and lasted two days. Surely if I wanted it bad enough I could do it, right? Thoroughly humiliated from the experience, I stayed home.
And July. In addition to the third month of my paincation, this month marks a year from when I was diagnosed with this lousy disease. It has been a particularly rough year, but in ways not considered “routine” by breast cancer standards in popular culture. You see, I’m an invisible breast cancer patient. I have my hair, I have my breasts, and I even have my tumor (but not next to the wisdom teeth I still have in my drawer). Unless you know that I have breast cancer, I look none the worse for another year’s wear. You can’t see pain. You can’t see disappointment. Sadness. Confusion. Career in shambles with significant people already writing me off as dead. No, I’m fine.
You know that 1 to 10 pain scale that hangs in your doctor’s office? That is such bullshit. If “10” is the absolute worst pain, then I’m thinking an angry face with fists punching out a wall is more appropriate than the sniveling sad face. Obviously a pain scale created by someone who had never felt pain at a “10.” Most of my paincation can be rated somewhere between one of those little faces smirking and flipping the bird and the little face punching out a wall. Better yet, let’s make it between 4 and too serious for numbers.
This past Saturday I was looking forward to having dinner out with friends. It was also an opportunity to meet some new people too, so I was psyched. I haven’t been able to get out a hell of a lot. But karma had other things planned for me. I’ve been taking 2-4 doses of Oxycodone a day (often less, quite frankly) since May 1. When you take opioids, the first thing you need to be mindful of is constipation. And I had been doing a pretty good job of staying ahead of any troubles. Drinking lots of water, taking the necessary pills, and eating fiber and whole grains. Like anything else, though, for a few days I began to slide a bit and wasn’t drinking water as much as I should have. And just before I was to leave for dinner, what I thought would be a routine pit stop turned into the worst case scenario. I was hit with nuclear constipation. Yes, the abominable impacted bowel. So when my friends drove up to the building to get me for dinner, they actually wound up taking me two blocks to the emergency room. Once we arrived I sent them on their way as other people were expecting them at the restaurant.
It was, as you might imagine and without a doubt, the most embarrassing and humiliating circumstance, but there was no choice but to address it and get through it. But that turned out to be harder than I thought it would be. In addition to the primary complaint, my back was sore. This whole paincation is the unhappy intersection of bone pain and a 30-year-old laminectomy. I laid on the gurney using my folded shorts and sweater as a pillow. I was cold and uncomfortable, and as more time went by I was less and less able to advocate for myself. I was so cold I was shaking. The Scorch, who can usually strike an intimidating presence, became more and more like a spent firecracker.
I texted my sister to let her know what was happening and she was sick that she couldn’t be with me. She asked if anyone was with me and I answered: “No. I’m alone. As always.” That response was not hyperbole. Since the day I was diagnosed I have faced this bloody disease alone.
I found out I had breast cancer alone, had biopsies alone, and learned the results alone. I faced hours waiting for appointments and tests alone. There was never anyone to hold my hand when I was scared. No one to ask the questions I forgot or to advocate on my behalf when I was too tired or too high to do so myself. There was no one to nose around for information while I was busy getting blood drawn or an x-ray done. No one to make a decision because I kept insisting on making the stupid ones (more on that later). No one to help me sort through the pile of unpaid bills and unopened letters because I’m so otherwise overwhelmed.
This is in no way a passive aggressive complaint about my friends. I have the best friends in the world. Indeed, you would be hard pressed to find better people. Unlike a family member who can be blackmailed into spending hours of wait time with us, we have more respect for our friends! I could probably have a long line of people wanting to hold my hand, but I don’t want to impose. (And, no, this is not a passive aggressive request for anyone to do so.) Colleagues, the greater #BCSM community, and the blogosphere have all been incredible. My friends have made me meals, brought me dinner, and sat and watched movies with me. They’ve always been there to listen and to support me. And as wonderful as they are, I wouldn’t shoulder any of them with the responsibility to, say, be my emergency contact.
Indeed, I have no emergency contact. Mine is the story of those women and men who don’t have one. The people who go to the ER alone because essentially they have no other choice.
I was waited on very quickly in the ER, but a change of shifts complicated things just as the department got busier. I didn’t know how long I would be laying there. The methadone I took earlier in the day had begun to wear off and the bone pain was building. The ER nurse checked on me once in two hours. She never so much as offered me a blanket or a cup of water. And I was increasingly unable to advocate for myself. I had texted my friend Marie on and off; when I texted her again at 9:00 pm she was surprised to learn that I was still there (I had been there since about 5:15). She asked me where the emergency room was located and she was with me in 30 minutes. Once she arrived she advocated for me. She found a blanket that helped keep me warm and gave me some dignity. A small pile of gowns served as a perfect pillow. She held my hand and joked with me.
After I took the Valium she sat with me and urged me to sleep, and she made sure the doctor didn’t forget me before it wore off. She stayed close by during the indelicate procedure and was right there to rub my shoulder for comfort when it was over. And once the back pain increased to the point where I began talking to myself as I lay on the gurney, she made sure I got my discharge orders and was able to leave. When we left the ER, we crossed the street and she had to stop me from walking the two blocks home and hailed a cab. (See what I mean about stupid decisions? You don’t think straight when you’re in pain like this.)
As Marie trekked to the pharmacy to get stuff, I took a shower and tried to regain my dignity. And when she came back I told her that this had been the first time anyone had ever shared the burden with me. It made such a difference. I was free to be the patient, free to hurt, and frankly free of the responsibility of holding it together. For the very first time.
I wrote not too long ago how hard it can be to face disease alone. But it was the laundry, the cleaning–those practical every day hurdles. The art of distraction when I decide to look at disease in a larger context. But I hadn’t really considered what alone really meant until I lay there in the ER, pain coming from two locations, the one slowly and consistently taking me over to the point where I could no longer really advocate for myself. To be able to lean on someone, instead of having to keep it together. The love that comes through someone just holding your hand.
If you have it, never take it for granted.
If you don’t, I am there with you. I know how you feel. And, yes, it blows.