A Pouch Woman Speaks

Karen Julie

Let me end the suspense here at the beginning. I am OK. I had transitional cell carcinoma of the bladder which was diagnosed in 12/99. I had bleeding several months earlier which I attributed to the uterus since I was in the middle of the change. I was, therefore, not alarmed and waited until my scheduled GYN visit in October. My doctor also thought it was uterine and I had an endometrial biopsy [no fun], and then a course of antibiotics. When I kept complaining that I was still bleeding, and was also putting out clots or tissue which looked like cabbage leaves, and it was only when I peed, she sent me to a urologist. The urologist scoped me, saw the tumor, and gave me the name of the surgeon to call ASAP. The tumor was also confirmed by IVP and sonogram. I had the TURB in late December and received the pathology diagnosis on 12/31/99. The surgeon had removed the tumor but the bladder sampling showed spread to the bladder muscle layer. She told me a cystectomy was necessary. The 1/2000 bone scan was clean but the CT scan showed lymph node spread. I went on chemo from 1/2000 to 6/2000 and had the surgery on 8/8/2000. My surgeon did the cystectomy, total hysterectomy and radical lymph node dissection. I was in surgery for about 10 hours, stayed overnight in recovery, and spent 8 days in the hospital. The CT scan after the chemo showed no lymphadenopathy, and the surgical pathology showed no sign of cancer in any specimen. I opted for the Indiana pouch rather than the external ostomy appliance. The surgeon and oncologist were very pleased [as was I] and said it was the best possible outcome. You have the basic facts. Now for the real story of my entire cancer journey to the present.

I am 52 years old, married for almost 29 years and have a 24 year old daughter. I am a clinical psychologist, work at a nearby state hospital and also have a private practice in the evenings. The diagnosis of bladder cancer was like a lightning bolt from nowhere since I have always thought I was in the high risk group for breast cancer given my family history. I also do not smoke, drink to excess, use dyes in my work, drink coffee [only tea for last 10-15 years], etc. I kept asking that useless question, how come? I also felt very well, went to the gym before work every day, etc. It was so hard to believe that I carried a copy of the sonogram around with me as proof to myself that I had a tumor. There it was, this fringed stump of a thing sticking up from the floor of my bladder, looking like a closed sea anemone. The idea of the surgery itself did not frighten me. I am the daughter of an ENT surgeon and the sister of two orthopedic surgeons, so to me, being cured of something, being cared for medically, is to have the diseased something cut out. You feel crappy for a couple of weeks, then you are fine. The idea of chemotherapy, of having toxic medications poured into me over a period of many months, really freaked me out. I could not believe that it could work, nor did I understand how it worked.

I was very lucky to have access to the level of care I received. I became part of a research protocol at Memorial Sloan Kettering. The medications I was being given were not experimental, but how they were using them was. I received 5 infusions of doxirubicin and gemcitibine on alternate weeks over 10 weeks, and then 4 three day infusions of paclitaxel, cisplatin and ifosamide over 12 weeks. I had to self inject Neopogen to stimulate my bone marrow to boost my white counts in between. I thought I could never give myself a shot, but I learned how. They suggested using the soft part of the inner thigh [right!]; I used my lower belly and rotated quadrants. My husband had joked that he was going to get to play doctor, but ultimately, no one could stand to do it. I had the usual side effects, loss of taste, mouth sores, fatigue, skin changes etc. Once I could "shoot up" comfortably, I felt I could do anything. They were aggressive in managing the other side effects, so I had minimal nausea, and never vomited. I had a good appetite but nothing tasted like anything. I usually stayed home the day after the chemo, a few days longer for the second series. Daytime TV left only the cooking channel-quite an irony. Well, I kept the recipes of things I was going to cook after my taste buds returned!

I had been studying clinical hypnosis before all this started and so turned to my teacher for help with visualizations and self hypnosis. She helped me put together an induction tape to use daily, and to use during the chemo infusions. It dealt with relaxation, healing energy, and talking to my immune system and the healing portions of my mind and body. The important part, I think, was also seeing the side effects as proof that the chemo was working, welcoming the chemo, not fighting against it. In addition, I did a lot of reading, had reiki massages, and had a wide email support group, most of whom were cancer civilians.

I lost my hair the night of second treatment. I initially just looked mangy, and I had my husband shave my head after a few days. I got a variety of hats and finally some wigs. Continued to work out and worked out bald, and went to chemo bald–if I couldn’t be bald there, where? Funny thing, being bald felt OK, it was where I was and who I was then. Wearing a wig made me feel like I had a deficit that I had to cover up. My husband’s associations to me were Mr. Clean, George the Animal Steel and other wrestlers, not the sexy Lt. Ilya [sic] the Deltan woman on Star Trek. I felt like more like her! And men kept coming over to me in the gym telling me how hot I looked bald! Women would come over to me in the locker room and, in a whisper, ask if I were a survivor. I told them I was doing my best to become one. Overall, I think I got through chemo by trying to keep life as normal as possible. I had an illness, I was under treatment, but I had a life outside of it. Outside of the days I was too tired, I worked throughout, and went to the gym and did everything I usually did.

There is something to note if you are on Neupogen. You get a lot of strange pains in your bones. The little card they give you says that you might have flu-like symptoms. I have never had the flu and to me the flu
means you have an especially bad cold. Well, driving home from work one day I started to having thudding throbbing pains in my chest. I thought I was having a heart attack and started to pull over. Then the throbbing shifted to my upper spine and the base of my skull, then disappeared. When I called the doctor, he said those were the flu-like symptoms, and I should be having them in the long bones. I never did. I had them in the sternum, spine and ribs. Go figure.

I thought I would be glowing with radioactivity by the time chemo was done. I had repeated ct scans with limpet dye, lying down on the table having to pee like crazy, getting ready for that lower pelvic warm feeling of the IV dye infusion. OK, I am ready for my close-up Mr. DeMille. I also had several different kinds of cardiograms because the chemo can damage the heart valves, and the bone scan before and after.

I had the guidance of another patient who was ahead of me in the protocol, and who had let me know what to expect and how things would feel. It was so good for the doctor to pass along a fellow traveler to help. It was devastating when I heard that he died. His bladder cancer had spread to his bones and they could not arrest it. It was so hard because as you are going through, you want to believe that everyone will make it, that everyone there in the waiting room is going to survive, that you will make it too. You need to believe that this stuff works. Well, it did not work for everyone and Mike died.

After the chemo I had about 6 weeks before the surgery. Since the ct scans showed no lymphadenopathy, I  wondered whether I needed the surgery or could just wait until something else showed up. My surgeon quoted a 70% recurrence rate, especially with the p53 marker I had. I went to another doctor for a second opinion and he said there was a 100% rate of recurrence. OK, I was convinced. My doctor’s office asked what day I wanted to have the surgery. I told them I wanted to have it in the beginning of the week so if I had a post-op complication, I would not be dependent on weekend staffing.  My surgeon gave me the names of two women about my age who’d had the cystectomy and who had chosen the different urinary diversion types. They both found that their methods worked well with their lives and they were doing well in general. I opted for the pouch, even though the surgery is almost twice as long, and there is a greater risk of complications.

I went through all the pre-op prep at home, and packed for the hospital. You go into surgery stripped of everything-clothing, identity,
and narcissism. No clothing, [except the hospital issue], jewelry, wedding ring, nail polish, makeup, moisturizer, etc. You really do feel naked. Memorial has hit the newspapers recently with several glaring medical errors, so that now everything is checked. You go into the OR conscious, and they check your name, address, birth date and procedure. When the nurses came out to get me, and check my identity and procedure, I told them I was having breast augentation. My husband told me he had kept the motor running and I could still change my mind. When I got into the OR, I noticed that there was a sign on the wall, with my name and the procedure-like I was the breakfast special, and remarked on that to the nurses. I stood in the OR, and before I climbed on the table, I addressed the group. I told them that the medications they were using were hypnotics and did not induce true sleep, that I would hear and take in what they said about me. They should not lie, I knew what I had; they could talk about the Mets if they wanted, but anything about me and my recovery should be put in positive and optimistic ways. I climbed onto the table, held hands with the anesthesiologist, and that was the last I knew until someone called my name in the recovery room.

I had made another healing hypnotic induction tape, one for the surgical period. I could not wear it during surgery and could not expect someone in the OR to put it on and monitor the tape, so I had my husband put it on me when he could visit in the recovery room. Since I was largely out, I did not have to spend any time on the tape on relaxation! The tape largely dealt with specific healing themes, like decreased post-op swelling, bleeding, pain, etc. There was little blood in my drainage bags and the residents and fellows kept saying how great it looked— and I told them that if my urine drainage bags were beautiful to them they needed to get out more. Anyway, I used the morphine pump for a few days as directed, prior to trying to get out of bed to move, but was in no pain other than when I tried to get out of bed. They sent me home with vioxx and percocet and I took none of the latter as I was in no pain except when I transitioned to standing.  Did the self-hypnosis help with the healing? I think so. The only surgery related crisis that I was aware of was when the fellow removed my staples a week after the surgery. About 3 inches of the incision opened up. They could not restaple it because now it was no longer a sterile field. The skin would just have to close on its own. I was assured that this type of thing was quite common after abdominal surgery–maybe to them but not to me!  I kept thinking that they would keep me longer but they made me go home. They felt I was doing well enough to manage at home, and given the number of resistant hospital infections floating around, and since I was a "clean case," they wanted me out of there with an open wound as soon as possible. I had a visiting nurse for wound care and that helped a lot.

I also had those anti-blood clot leggings on at night in the hospital. They were very efficient at keeping you from sleeping through the night. I would have these dreams of running here and there, moving my car here, moving it there, trying to remember where I put it-it was all the squeezing of my leg muscles. I would be exhausted in the morning!

When I got home I had the urine drainage bags on each leg for day and then larger ones for night drainage. During the day I looked like either Xena Warrior urology princess with shimmering golden armor strapped to my calves, or like a honey bee with the full yellow pollen sacks. However, I was walking like Tim Conway as the old man on the old Carol Burnett Show!

Anyway, the surgical catheters gradually got removed, The surgeon was happy with my progress each time. I got the hang of self-catheterizing. I managed to be brave and handle the chemo and the surgery, but had a crisis one night with a mucus blocked catheter and ended up in the Memorial ER at midnight, with one of the fellows irrigating me because I could not get any urine flow going. I kept envisioning everything backing up to my kidneys and all sorts of bad things happening. Had to fall apart sometime I guess. We are passed that now.

I now catheterize with confidence and some degree of competence. I am also getting greater capacity as it gradually stretches to hold more. Some times it flows freely, other times I feel like I have traded by bladder for an FM antenna-you have to move the catheter and urinal up, down, side to side, etc to get the best reception. Once you have this procedure, you can NEVER be without a catheter [and lubricant] on your person. I go to get the mail, run to move my car, whatever; you never know you could get stuck somewhere… Sometimes I have a little leakage, and I fret about how I have been toilet trained for 50 years…. My stoma is a little rosebud off to the side. They decided not to use my navel.

You also become an expert on urine-now a signpost of your health. Is it cloudy or clear? Is it mucus filled, foul smelling, too much, too
little, too pale, too yellow? It took a while to get used to the idea that this was going to be how I peed for the rest of my life. It was not like a temporary cast on a broken leg. I am much more at peace with it. I am feeling largely back to myself though, and gave myself time to heal. I will be going back to work in about 2 weeks. The incision area is still a little tender but it is getting better. My head hair is now about ¾ of an inch long, so the chemo effects are finally retreating.

Oops, I forgot about sex. They change your genital geography a whole lot with the hysterectomy. It feels like I have been made into a virgin a 3rd time around. How lucky can one woman be!

So that is my story of my cancer journey. I hope it is helpful to others considering the pouch. Please feel free to write if you have questions.

Helpful Hints
Being in hospital can be an infantilizing experience. If you don’t feel like having a certain thing done at that moment, ask the person to come back in a few minutes, or count to ten before letting them go ahead-just so you are at least a little in charge of what happens to you. You can call and ask for someone to do what you know someone is going to come and do anyway-but at least now it feels like you are in charge of it happening. This is not meant to drive nursing staff crazy-but we do better when we are not passive recipients.

Walk as soon as you are able, and no matter how much it hurts, it helps with the gas, gets your system flowing,, etc. They will try to get you up the day after your surgery anyway, when you really can’t believe it.

You will have to sneeze and cough. It helps if you keep a folded up pillow on your belly and press down to support the incision while you
try to cough.

Enjoy passing gas-this is not a time for social worries!

This was my husband’s brilliant suggestion: wrap a doubled piece of the large size bubble wrap around the waist part of your seat belt and tape it on. It feels better than a towel or pillow over the incision and I am still using it when I drive.

Get a Medic Alert bracelet or necklace. 800-432-5378. If you are unconscious, no one will know you have had a urinary diversion. You will
need to be catheterized every few hours and may not be able to let anyone know. You do not want someone putting you on a bedpan or holding a catheter looking for your urethra!

Do not put Surgilube on your toothbrush. I have done it twice late at night and it does not work.

Finally, you need to really believe that cancer is not necessarily a death sentence, that you will heal and get past this.  

Addendum:  This essay was originally written in 11/2000.  It is now April, 2009.  I am still here.

greenegoddess1@JUNO.COM see some pictures of Karen and other members at our page: Faces, what living looks like