I’m learning that when asking for help, there are magic words that get people all excited to help and other words that cause nothing but weird looks as people try to figure out the appropriate response.
Surgery. Cancer. Yes! People know what to do about that.
Nosebleed. Um… Huh?
A few days before my husband left to farmsit for friends, which itself was immediately before he got his thyroid out, I got a nosebleed. I cannot find words that properly explain the severity of this nosebleed. I bent down to pick up a dropped pen and a hemorrhage began. I couldn’t get it stopped and couldn’t get ahold of anyone. I was at my office and thankfully thought of calling the building management and the receptionist drove me to my doctor’s.
My doctor and two of her partners couldn’t get it stopped. When they’d measured 400cc (almost half a liter) of blood loss, in addition to all the bleeding before I arrived and all the drapes and chux and towels, they called an ambulance. By then I was a mess, blood in my eyes, my hair, all over my clothes. The EMTs were very nice and transported me “lights and sirens” to the hospital.
The ER doctor was very nice too. And my nurse, who got IV fluids going. The ER doctor got the bleeding slowed down but not stopped so called ENT.
ENT wanted something else tried so the ER doc took out the soft packing that was sort of working and tried the ENT’s recommendation. Which didn’t work. So then it was an effort getting it slowed down again. And then the ENT wanted something else tried. And so forth.
My nurse would get me all cleaned up, my face washed, a fresh blanket over me, and leave the room. The ER doctor would appear and try something else and make a huge mess. We were collecting 2 and 4 ounces of blood at a time. The doctor would finish and leave the room. Then the nurse would come back in, see me covered in blood again, and get an incredulous look on his face. “Doctor back in again?” he’d ask. Then he’d clean me up again. And call housekeeping.
Housekeeping would skirt around the edge of the room, looking at me the whole time, and empty a full trash.
Then we’d do it all again.
Finally the ENT came in and did lots of really painful things to my nose. Injections of lidocaine with epinephrine right into the septum of my nose, which made my heart rate shoot up into the 200s. Silver nitrate, which burned and made me sneeze. But the bleeding finally stopped.
I was so grateful to go home and throw away my clothes. I had 4 times a day nose care instructions.
That was a month ago. I was quite anemic (no surprise) and the next two days I sat in my chair and shivered and ached all over and struggled with migraines.
But then it happened again. This time I’d learned a few things from the ENT and got it slowed down and convinced my PCP to try her hand at the silver nitrate. It worked.
But then I had to go back to work and my husband went to the farm. I made a visual list for the kids of what to do if I got a nosebleed so they’d be ready to go to the doctor with me. I’m so grateful we never had to use that list.
I only had a few nosebleeds while my husband was gone, thankfully, and I was able to get them stopped on my own. But they got worse and worse over time. They’d wake me from sleep and I’d be up for a couple hours trying to get the bleeding stopped. If I lay down it would start again so I’d have to sleep sitting up in a chair. I had to take a nosebleed kit with me everywhere. I’d have to see patients with a cotton ball soaked in Afrin shoved up my nose.
At my follow up with a different ENT, which happened a couple days after my husband’s total thyroidectomy for thyroid cancer, I was given a last ditch treatment before surgery… A compounded estrogen nasal spray.
A few days later, I woke up in the middle of the night in a pool of blood. It was caked in my hair and made a huge circle on the bed. I’d been so tired, I’d slept through quite a nosebleed. I spent another hour getting it stopped and slept the last hour or so of the night upright in my chair.
My daughter woke up in the morning and looked for me. Since my husband had already got up, she found our bed empty and thought we’d gone to the hospital in the middle of the night and left her alone. She sat in the bed and cried and cried. I finally heard her and rushed in. She clung to me and sobbed, rubbing her soggy face into my shoulder.
Who knew a nosebleed could take over one’s life? But it has. I can’t go anywhere without a nosebleed kit. I can’t lift, bend down, or exert myself without risking a nosebleed. I’m miserable but I can’t get emotional or cry unless I’m willing to risk a nosebleed.
Everyone has been asking how my husband is doing. He’s fine. A little tired. A bit of a sore throat from the breathing tube. We’re hoping the final tests in a month are good and indicate no residual tumor. He’s not allowed to lift over ten pounds or bend down because he could bleed into his neck. But he looks and acts and feels pretty normal.
And then we try to explain that I’m *not* fine. But that word… nosebleed… it spoils any explanation of severity. But gradually my friends have figured out that I’m preoccupied with my nose and seem to humor me. One wonderful neighbor has fed us a couple times and helped with the kids. But overall, I’ve felt so scared and hopeless and helpless and alone.
Then day before yesterday I was done. I didn’t care if it made me bleed: I cried. I didn’t let myself sob, but I overflowed with tears. I wrote an email to a few friends asking for prayers that this would stop and I wouldn’t have to have surgery. Surgery for a stupid nosebleed. Surgery is apparently a magic word. One of them called my husband to ask a bunch of questions and apparently he was fairly compelling in his description of what was going on.
The next morning not one, but two pastors showed up at our door together to pray for me. Did I mention that two of my friends are married to pastors? It was 8:15 in the morning and my daughter was in the bathtub and my husband was naked. So I stayed by the front door and was anointed (did you know they have roll on anointing oil these days?) and prayed for.
“So since I have two pastors right here,” I said a little shakily, “I have a big worry.” They both looked at me with pastoral concern. “What if I’m taking one for the team? What if I mess with what’s supposed to happen by asking for this to stop and instead something terrible happens to one of the kids?”
One validated my fears but said that God isn’t that sort of person. The other pointed out that when Jesus healed people, He just healed them… He didn’t make someone else get sick to balance it out. (Later, when I told my husband about it, my husband pointed out there was that herd of pigs…)
Then the first asked if his wife could organize a meal train. I admitted that we haven’t coped well in that arena and would be grateful for some help.
And now all of a sudden, after years of feeling like we had to soldier on mostly alone, we have people not only praying for us but bringing us meals, helping with the kids, we’ve even had a offer to clean our bathroom for us! I’m guessing this is the community that people are always talking about. It’s a little overwhelming but really nice too.