PUNISHMENT, cruel and unusual ~
Discussion (?) - Morning breaks. My surgeon arrives. Yep, small bowel obstruction. Surgical repair required. And, since we're going back in, should probably take out the ovaries. (B and I had already planned to request this. How f'd up is that???? As, apparently, this is a locale my nasty new cancer likes to seed.) We agree.
"One other thing," he says.
"I think we should do a gastrografin enema as well." I'm confused. Why? What will this tell us about my obstruction?
"Nothing. I just want to make sure there's no other cancer in the colon." F@ck. The thought - of that. Shit. The process - of the test. Okay.
"Okay. I'll schedule it. We'll plan for surgery at 4."
Enema - After a day of fluids, NG drainage, and waiting....around 3 in the afternoon, another of the consistently caring, human transporter team arrives to take me to the ENEMA!!! I should explain. I will be placed on a table under an x-ray machine. While there, a tube will be put in my rectum and gastrografin (a liquid that will show up and outline my parts on x-ray) will be injected while my abdomen, specifically my colon, is filmed at the same time. B and I are parked with the same sweet chocolate brown lady, alongside the other pitiful waiting misfit toys. I dread my fate. Suddenly, the sweet tech of the slidey table fame, is kneeling by my wheelchair. Unlike most patients, I know what is coming. But, thankfully she takes the time to explain every step of the process to me before I even go back to the x-ray department. Thank you, kind lady. People deserve and need that! We are off. She helps me get into position on the table. Behind me, she talks me through each step. Then, things go a bit off the rail. I am to turn. Not easy for me period just now, especially with something up my derriere, pain from my earlier surgery, an IV, and a tube down my nose. With the increased pressure from the fluid, there is increased pain. She tries to help me. Suddenly, the tube is dislodged. Fluid is flowing rapidly everywhere - up my vaginal area, all over my bottom and stomach, including my incision. I try to yell to let them know. Finally, I am heard. The flow is staunched. The tube is awkwardly replaced. We begin again. In certain positions, I can see the radiologist as he peers and frowns at the screen before him. He doesn't seem to like what he sees. Or can't tell what it is he sees. Then, we are done. Sort of. All folks but the nice lady leave. She tells me that she is going to drain as much of the fluid from me as she can. I hear fluid pouring into what turns out to be a garbage can. Despite the flow, the pressure and pain does not decrease. Finally, she feels she has drained all she can. She removes the tube and helps me up. I have to make it about 6 feet to the bathroom. We manage the process. Explosive emptying of more fluid. I try to return to the wheelchair. I go back to the bathroom instead. And again. With a sympathetic look, kind lady tells me we must return to the parking garage as the transporters have already come to pick me up. They want to take me directly to surgery! Back to the parking garage we go. The transporters have departed but will soon return. B is waiting for me in the furthermost corner of the room that is now quite full. Two seconds after being parked, I tell B -
I HAVE TO GO - now! He wheels me to the bathroom. I jump up with B trying to cover my behind to release another torrent of gastrografin. Back to our corner. Moments later, I have to go, again -
NOW! He takes off - pushing me back to the bathroom. I return to the wheelchair, but dash back into the potty again. Sweet chocolate lady is a bit alarmed. She has been helping B wheel me back and forth, trying to hold blankets to shield others from exposure to my nasty bare backside. At this point, she starts moving misfits madly in a strange game of tetris so as to make a parking spot for me closer to the potty. We try to convey our thanks. I rush to the bathroom repeatedly. Suddenly, the transporter appears and we head to pre-op.
Pre-op - I feel disgusting. I am disgusting. As the nurses try to settle me in bed and start the various questions and procedures needed for pre-op, I tell them I have to go. I don't know if they are aware of the procedure I just completed or not. The bathroom is several doors down the hall. I must hoof it down there and back to my pre-op room. I make the trip several times. While there, I try to clean some of the gastrografin, sticky and mixed with my own excrement, off my bottom, my front, my stomach, with rough brown paper towels I dampen in the sink. Slightly smug and handsome anesthesia man appears. We repeat the issues I have with pain/vomiting/dyskinesia when asked about medications. He agrees that marinol would be wise to repeat preoperatively and suggests an epidural to help with post-op pain. Sounds good to me! I get in position, seated on the side of the bed, bent over a bit so that he can place the tube in my spine. Ooops! Sorry, mister. Gotta go! And I do. No one seems very pleased with me. Least of all me. Finally, I seem to be pooped out. Epidural placed. IV restarted. And, apparently, some drugs already given because when I ask if I will see my surgeon before surgery, the nurse tells me I've already seen him twice. Oh, well. What I want to know is the result of that dastardly enema!!! WAS anything else seen in my colon??? He says no. Okay. Good. B returns briefly, after being made leave at some point. I must have dosed a minute. Next thing I know, I am looking up at the bright lights of the OR and am being placed on a cold metal table. Great! This would freak some folks completely out!!! Peeps would probably be better off snowed at this point!!!! Even me.
Post-op - Not as groggy as previously in recovery. Reasonable - as this ta-dah took only 50 minutes while my prior surgery lasted over 4 hours. No nausea. So that is good. They take me back to my room on the floor and B around 6 pm. After my busy little afternoon, I now have an IV, a foley, NGT to suction, a drain/pump to my new and extended abdominal incision, leads with a telemetry box, and my epidural with its pump. So very tired. There is pain, but the epidural is helping. I rest some through the night. In the morning, a person from anesthesia comes by to check the epidural. He tells me he noted that I didn't push my button to get any additional meds through the epidural beyond the constant rate it was set at, so I must not have had much pain, huh? Well, it was okay, I say. BUT, I wasn't aware I HAD a button!!! He doesn't have an answer to that and decides to decrease my continuous rate anyway, since I hadn't used my button. Don't know if the actual decreased rate of pain med or the knowledge of the button made the difference, but I need and use my button now.
The struggle is real - Days and nights blur together. I am to get up only to go to the bathroom while I have the epidural. I remain NPO with the NG to suction. Stooling begins again the day after surgery. At first I try to take myself and all my bags and boxes to the bathroom. But soon, B kindly sets up the bed side commode (Port-a-potty, as he calls it!) right by my bed. He unhooks what he can, places my boxes and pumps just so, such that I can just stand, pivot and sit. How much crap can one person contain???? I am thankful for the epidural. It is helping.
Pain and folks who don't like it - Some nurses can't believe I don't want anything for pain. I am no martyr. I would love to be rendered unconscious until this is over. I would happily take pain meds ~ if they didn't make me throw up ~ and if the meds for that didn't make me lose my mind!!!! One night, when the pain was particularly bad, a rather old school battle ax nurse was determined that I take something. She offers morphine, Oxycontin, dilaudid. We explain the problem. She has a look that says I am an idiot and B is a bully keeping pain meds from me.
"What about trying the dilaudid?" she asks.
"Does it cause less nausea?" I ask.
"Folks don't usually seem to have a problem with it." B looks skeptical.
"Okay. I've never had it before. I'll try it." When less than half of the 2 mg dose has been pushed into my IV, the nausea hits like a wall. I force her to stop. No, I don't want the rest of the dose. So much for dilaudid.
Heparin and other bumps in the night - Post this surgery, as well as the prior one, I have been wearing compression boots that pump up and down much like blood pressure cuffs on your calves, while in bed (These are of a soft material which is an improvement over the plastic ones I had to wear after my thoracotomy.) and getting heparin injections to, theoretically, prevent the development of blood clots. Usually heparin is administered to the abdomen, but having had surgery there (TWICE!!!) nurses opt to use my thighs,
"since they are unaffected." Hmmm.... The granulomas (scar tissue) that developed after all the peptide vaccines I was given in my trial are not as large and obvious as once they were. Now, they are more like tiny hard marbles scattered beneath the skin all over my anterior thighs. I warn the nurses of this. Some don't seem to understand. Some get it and ask us to help them find an unaffected area to inject. One hits a granuloma head on and freaks the F out! When she can't get the needle to go in, she mashes and smashes and wiggles it around, making a really impressive bruise in the process. Oh well.... What's a girl to do? But -
BIG FYI NURSES!!!!! When you have syringes with a retractable needle - you do
NOT use that mechanism to withdraw the needle from your patient's flesh.
DON'T DO THAT!!!!! Remove the needle from your patient,
THEN retract your needle. Common sense really. Meanwhile, the sides of my thighs are becoming incredibly hot, swollen and red. Is that normal after a zillion heparin injections? I don't know.
Tubes/starvation/renal function - 2 days after surgery the NG is removed. I start clear liquids. I don't want them. I am afraid. Voluminous watery diarrhea continues every 1-2 hours. My back and bootie are sore. They ache and burn. From being sat upon for so long. From having foul things pour from them for weeks. From referred abdominal pain. From ever increasing edema to the entire area. My feet are no longer skinny. Still thankful for the epidural. My urine, visible in the foley, is changing to a very odd pinkish red color. Blood? Infection? Soon, there is almost no urine output - at all. B is disturbed, fearing acute tubular necrosis, which can occur due to insufficient blood flow to the kidneys. It can appear a few days after significant dehydration - for example! I am too weak to get too worked up. I know he will do it for me. Daily labs reveal that my protein is very low as is my hemoglobin. Albumin boluses are ordered. B is concerned about my nutritional status. Since admission 15 days prior, I have eaten: 1/3 of a grilled cheese, 5 noodles, a few bites of grits, about an ounce of tomato soup, 1 1/2 cans of ginger ale, 6 ounces of lemonade, a little tub of chocolate pudding, 8 ounces of Gatorade, about 4 ounces of broth, a few bites of scrambled egg, water and ice chips. Most of this was within the first few days post op. So ~ not much. Negate that intake with vomiting, removal of gastric contents via an NG to suction, and profuse, watery diarrhea every 1-2 hours for weeks. Now, what???
Another nurse, another story and pee returns - Smart, skilled nurses are taking care of me (and B) during
this crisis. They agree with B that the albumin might have more effect if followed with lasix (a diuretic), but that is not how it is ordered. We wait to see what happens. My urine gradual clears and production resumes. I am thankful. I need no other complications! Incidentally, for the past few days, with no explanation, techs have been checking my blood sugar three times a day. When begun, I question why. I am told it is floor protocol to check it before meals. I remind them that I have no meals! I'm NPO. No answer to that one and the pokeage continues. Whatever. We carry on. A new nurse arrives. She is a bit
'off'. Awkward. Skittish, yet strangely talkative about herself, her daughter's maladies. Okay, slightly weird unkempt lady. Let's just get through this shift. A bit later, she returns with my final bolus of albumin. She starts removing the tape and dressing off my IV. I ask why. She says she is going to infuse the albumin directly into the hub of the IV itself. I tell her that other nurses have been using the port in the tubing and show it to her.
"Oh," she says. It is abundantly clear that she has no idea how to administer the infusion. She inserts tubing into the small bottle of albumin, wasting most of it by draining it into the garbage. Attaches it to the port where it doesn't really infuse because she doesn't know how to set it up. I should tell her how. I lack the strength. I receive little of the albumin. Hopefully, the other doses have done what they need to do. She leaves. A few hours later, she's back. Cheerily, she tells me,
"I have your prilosec, heparin, and insulin." "WHAT?????" I screech, as B bolts upright.
"I'm not on insulin!" "We've been checking your glucose and administer insulin per a sliding scale and you need your insulin," she tells us. I am incredulous!
"You give insulin for a glucose of 119????" "That's not what I was told...ahh...uhh...your last glucose was 119?" "YES!" Oh, my Lord! Can you imagine what would have happened to my limp starved self if she had given me insulin? Worse yet - can you imagine that anyone else would have known to say anything at all when she marched in running down a list of meds she is there to administer? Heaven help you if you are in the hospital. That shouldn't be the case. But, it is.
Bye Felicia (Epidural) - A couple days later, having left the epidural in as long as allowed, it is to be removed. The night prior, I make the most of it while I can. Idea being, get some rest while it is still in place. Didn't really help. It is removed. Within a few hours I am miserable. Hot. Flushed. The foley catheter is burning. I fear a urinary tract infection. Catheter care was NEVER provided over the past 5 days. My perineum is red, grossly swollen, with hard indurated skin because the swelling is so extreme. What the hell is up with that??? Different covering surgeon in for the weekend. I request a U/A and culture to rule out UTI. He allows it. It is clear. The foley is removed. I remain miserable - irritable, hot, acutely ill feeling for the next several hours. Eventually, I realize it is probably withdrawal to the infused drugs in my epidural. Hmmm.... Makes sense. But, why must I be the person to figure all this out? Oh, well. I void once the foley is removed with no problem. Thank goodness. I take a short walk. I am weak and trembling. I can't make the distance to see the unhappy quilt lady.
Discharged home, again - I work hard. To eat. To walk. To deal with the nasty that is my body. I am down to an IV, my telemetry, and a drain with suction to my incision. Monday afternoon, my surgeon appears. Fine. Go home. Dressing to incision is removed. Damn. It's ugly. More jacked up than it was before. Three plus inches longer, running up and down my tummy, through my belly button. Stapled. Two additional smaller incisions, to the right side of my abdomen and low on my suprapubic area, appear to be healing well. An inch long blister, which can only be a burn (Cautery instrument get a little too close during surgery, perhaps???) is raw and irritated on my left lower abdomen. I try to fit my swollen belly, thighs and perineum into shorts that were too large for me when I arrived. I give up. Panties, tee, and a robe will have to do. I'm rolled out to the parking lot. My baby drives me home. 19 days of my life have disappeared in a nightmarish haze.
...to be continued... c
