My first HIPEC surgery Friday on 1/21/2005, lasted 14 hours. I was so close to death my surgeon said I wouldn’t have lived through the weekend without it. During the surgery that saved my life, my right ureter was nicked. That tiny little whole in a tiny little tube would have a catastrophic effect on my quality of life forever. Long story short, that nick cost me my right kidney. For years we tried to save it but by 2013, it wasn’t functional, so I reluctantly had it removed.
My urologist assured me the left kidney was strong, functioning at 80% and would be fine. In 2015, I elected to have stoma revision surgery. My stoma, created during the 2005 HIPEC, was so retracted the skin around it looked like ground meat. It hurt all the time. I lost almost all of my small intestine in ’05 surgery (then even more in '06) when colon cancer wrapped around several loops of small bowel. I really didn’t have enough healthy intestine to create a proper stoma. Plus, at the time, my wonderful surgeon was trying to save my life. i.e. buy me a few more months maybe a year. A screwed up stoma wasn’t my biggest problem.
Surgical success? Kind of...
Ten years (of ground meat skin) later and cancer free for 7, we decided to fix it. I can’t say that I regret that decision because I do have an awesome stoma now. My skin around it is great. My abdominal scar, that’s been opened 7 times now (I really need a zipper installed) looks terrible and does cause some problems with my ostomy due to it’s proximity, a mere 1” from the stoma. But all things considered, from an ostomy stand point, the surgery was a success.
Unfortunately this stoma revision caused some major complications such as an abscess of my incision 8 weeks after surgery and ultimately kidney disease and high blood pressure. Scar tissue, of which I have a belly full, is pulling on my left ureter so much it causes hydronephrosis. Hydronephrosis- literally means “water inside the kidney.” The nearly complete kink of my ureter causes my kidney to become distended because urine is unable to drain.
Yes, it hurts but I was used to kidney/bladder pain so I didn’t notice a problem. I have blood work every month to regulate my IV nutrition (TPN) and fluids. My dietitian called me with results in May 2016 told me to go to the ER. This is when I find out the hydronephrosis has been so bad my kidney is permanently damaged. Now have stage 3 kidney disease. Kidney disease caused high blood pressure. Domino affect.
Her cheese has done slipped off her cracker.
This is where I kinda lose it. I told my newest doctor, a nephrologist, (kidney doc) “If I have to do dialysis 3 days a week for 5 hours a day on top of my 16 hours of IV fluids, my cheese will slip of my cracker. I don’t know if I can mentally handle it.” I mean, seriously, where is the line? Where does a youngish wife and mother say “No more?” I don’t know. I feel like I’ve handled everything thrown at me relatively well. I’ve adjusted the bar WAY low and then lowered again and again as to what is ‘normal’ for me but how much is too much? She assured me stage 3 doesn’t require dialysis and I could stay at stage 3 indefinitely if I took care of myself and my kidney.
Urologist puts a stent in the ureter to open it up so it can drain. A ureteral stent is a special device from the pits of HELL, invented by satan himself. It is so painful and I think I have a pretty high pain tolerance. By November I’m in the hospital again with acute kidney injury. That’s what they call it when your kidney completely stops working and you’re on the verge of emergency dialysis. Urologist says, “I don’t think the stent is working. I think you need a nephrostomy tube.”
November 23, 2016, the day before Thanksgiving this tube is inserted in my back, directly into my kidney. The procedure itself is awkward and uncomfortable. They tell me this tube has to be replaced every 3-4 months. I’m lying on the table thinking this is going to suck every time I have to have this thing changed. The tube is attached to a bag. I now pee into a bag that comes out of my back whilst pooping into a bag attached to my belly. Grand! Just Grand! This Is Fantastic. I feel sexy.
Thanksgiving morning 2:00 am, there’s blood in the bag and giant clots in the tube. I called the nurse. She paged the urologist, he says to flush the tube. I woke up a few hours later in a pool of blood. So much blood. I called the nurse again. When she came in and saw how much blood, she called for back up. We discover the tube fell out of my back. This is not supposed to happen! I could’ve bled to death. Two nurses work to clean me up while another called the doctor (at home in the middle of the night for a second time) he tells them to properly dress my wounds and save the tube, he wants to see it.
He came in around 6:00 am Thanksgiving morning, looks at the tube and tells me it was never placed properly. He explains what he thinks went wrong (he wasn’t the one who put it in.) He wants me to go to another hospital. On Thanksgiving I’m transported to a bigger hospital via ambulance. They call in the Interventional Radiologist on call. He comes in, says he doesn’t have a full staff due to the holiday, no anesthesia. Terrific! I get Fentanyl and Versed. He places another nephrostomy tube, this procedure is totally different, not as uncomfortable, which leads me to believe the first guy didn’t have any idea what he was doing.
The next day I get the stent out and have a bunch of scans and scopes. My kidney function returns to normal. Scans show something going on in some lymph nodes. The report said “enlarged lymph nodes.” I get out of the hospital a couple days later. This is the second Thanksgiving in a row I’m spent in the hospital. I don’t know what it is with me and holidays…my body doesn’t like them.
Three weeks later I follow up with my new urologist from the bigger hospital. He wants to try a nephro-stent. This is a tube that sticks out of my back but will go all the way through the kidney, ureter and down into the bladder. It’s the same hell as a regular stent but can be attached to a bag out my back. I HATE it. I cannot live with this pain. I opt to go back to a permanent nephrostomy. These guys, who know what they're doing, tell me I’ll have to have this changed every 8 weeks, not 3-4 months. Spectacular! Every 8 weeks I need to find someone to take an entire day off work to go with me to a hospital 1.5 hours (one way) away from home and sit around while I have this thing changed because I’m not allowed to drive myself home. Great, that should be easy. Terrific!
After cancer life or Life after cancer.
I had a follow up PET scan February 15. (Annoyingly, my doctor never bothered to call me with results.) I called him, finally got a call back 3/2. A lymph node is measuring 2cm located directly behind my left renal vein. This means it can't be safely biopsied. My oncologist THINKS it's not cancer. I'm full of faith, hope and positive thoughts but the reality is I've heard this "we think it's not cancer" before, but it was. This is the truth of life after cancer. I’m not really sure there really is an ‘after cancer’ life. I guess that’s why stage IV colon cancer is rarely called ‘cured’ we settle for ‘No Evidence of Disease’ (NED). It's kind of like living a life of "not cancer right now" or living with an internal time bomb. It’s not that life can’t/doesn’t continue. I think most of us live waiting for the proverbial other shoe to drop.
Don’t get me wrong, I’m happy to be alive. I LOVE being alive. I’ve watched my boys grow from toddlers when I was diagnosed into young men. I remember praying that God let me make it to see Nate start Kindergarten, Now we're looking at colleges and I pray I get to see him (and Kyle) graduate from college. I’m not able to do everything I want, or go everywhere I want and simple things like showering or going grocery shopping feel like olympic events but it’s still a life worth living.
I choose to focus on what I can do instead of what I can’t. I’ve lost too many friends to this wretched disease to do anything less. One very special person won’t get to see her beautiful 2 year old little girl grow into a young woman. There isn’t a day that I don’t think about Lindsey. I feel I owe it to her, Christy, Colin and all the others who died because of this disease as well as my family to continue to live a grateful life. So, NO. There is no line for me. I’ll continue to do whatever I have to do, for as long as I can stay alive. I will be grateful for every day even if I’m in pain. Even if I don’t move from the couch. Even if this isn’t the life I thought I’d be living. Even if I have a new ‘normal’ that’s not what I wanted…it’s what I have and I’ll take it gratefully.
Leighann Sturgin is a writer for The Colon Club's annual magazine On The Rise and Blog Master for The Colon Club. She was featured in the 2015 Colondar 2.0. She lives in Wooster, Ohio with her husband Todd and sons Nate and Kyle. You can reach her at email@example.com, or @nobuttgirl on Twitter, Instagram and Colon Talk.