Ponogram #131 - CC Chemotherapy

CC PERSONAL REVIEW

Bad Spots Dealing With Colon Cancer

Very few of the experiences associated with colon cancer can be thought of as bright spots, and I don't suppose anyone will be surprised to hear that there are some bad spots. Here are a few of the latter.

Bad - The NG Tube

As soon as I was scheduled for the exploratory surgery, nurses descended on me with preparatory procedures. One that I will never forget is the nasogastric (NG) tube. My digestive system was blocked from end to end and in fact the intestine was returning material back into the stomach. To remove this material it was necessary to insert a tube into the stomach and apply a pump. The tube is inserted through the nose and swallowed so that the end reaches the stomach. The process is aided with a little numbing and lubrication in the nose and a few bits of crushed ice in the mouth for swallowing. The major force for insertion is a quick and effective push by the nurse at just the right time.

I was warned that the procedure was a "nightmare" and it wasn't much fun, but later experiences with it were even worse.

The NG tube is very carefully and securely fastened to the nose with adhesive tape. It leads to a pump that keeps the stomach clear. A bag accumulates the material removed. In the evening a day or two after the operation, the tube became partially dislodged. A nurse (bless her soul) spent what seemed like an hour removing some of the tape, repositioning the tube and retaping it. The discomfort was excruciating!

Next morning the surgeon came in, said why do we still have this on, and proceeded to rip off the tape and pull out the tube. Bad side - lots of hurt. Good side - over in two minutes.

The leftover adhesive, nose chapping, nasal passage damage and throat damage took many days to return to something near normal. Going in to the second surgery I begged everyone who would listen not to use an NG tube. Guess I got the right guy because I had an OG (mouth to stomach) tube and it was inserted and removed while I was sedated.

Bad - The Vacuum Bandage

I'm pretty sure that some inventions of the medical community are viewed as wonders by doctors and nurses and as horrors by patients. An example has to be the vacuum bandage!

I was totally blocked going in to surgery and I'm pretty sure the operation that cut into this blockage was not a "neat" one. In fact I was told as much by the surgeon. One of the mitigations for the contamination situation was to leave the large access wound "open". As I understand this, the peritoneum was sealed, but the flesh and skin were left without staples or stitches. Attempts at sealing contaminated wounds regularly result in infections, so I guess it makes sense.

A day or so after the operation, a nurse who specializes in dressings spent an hour and a half or more with an audience of six or seven people installing a vacuum bandage on me. She started with a sponge and trimmed it and trimmed it until it just exactly coincided with the shape and size of the entry wound. A perforated tube was placed over the sponge. A non-porous bandage was installed over this and carefully affixed to my abdomen with (what else) adhesive tape. A vacuum pump was attached to the tube and gradually a partial vacuum was achieved inside the bandage.

The idea is to draw off material sluffing from the wound and with it bacteria and contamination left over from the operation. The invention is a wonder. When the bandage was removed, a line of people examined the results and oh-ed and aw-ed about how beautiful the color and granularity of the wound was. But...

A day after the bandage was put on; I was taken for a walk by a therapist. We took a Christmas tree along to hold the bags and bottles and the vacuum pump attached to me. The pump supposedly had battery backup and was portable. After the walk I got back in bed and the pump was again plugged into the wall outlet. I thought my abdomen was on fire.

Turns out the pump went off when it was unplugged for the walk and my wound returned to normal air pressure. When plugged in at the appropriate pressure it was too great a change. We had to start over and build up to the right psi and then all was well.

As it is in hospitals, after a couple of days it became necessary to change the vacuum bandage. Now I leave it to the reader to imagine what happens when you put a porous sponge over raw flesh and apply suction. Apparently the two become as one. Removal of the adhesive was horrible, but removal of the sponge was indescribable. No amount of the morphine I had access to with an automatic button was enough to mask the discomfort. Every square mm was agony!

Paranoid as I am, I can't help but wonder if the aforementioned oh's and aw's were designed to convince me that the vacuum bandage was worthwhile. I begged the nurse not to replace the vacuum bandage and I pleaded with the surgeon not to use that method after the second surgery. I was spared on both counts.

Bad - The IV Connector

IVs were an integral part of both surgeries, and although they are painful when inserted and generally uncomfortable to deal with, they become a way of life. However, one of them was the proverbial sore thumb due to what I consider an engineering flaw.

The IV was inserted on the back of my left hand just an inch or so from the knuckle. It had a V shaped connector. One leg of the V was parallel to my hand and connected to the major IV tube. The other leg of the V stood away from my hand at a 30° angle. The connector was securely fastened with lots of adhesive tape. The piece sticking up (like a sore thumb) was tipped with a rubbery end and used to push the odd order for an additional medication.

That rubbery end was insidious. It caught on the blankets, it caught on the sheets, and it caught on the pillows, the gowns, towels, nurses, doctors, and anything else that came close to it. It is inconceivable to me that anyone would design such a device. Even if they did, they should add a cover made of Teflon or Mylar or some substance that doesn't grab everything in sight. The grabs never did dislodge the IV due to the masses of adhesive tape, but it was a constant irritation.

Insult to injury? The sore thumb was never used for a push!

Bad - The Roller Coaster

I'm pretty sure doctors don't do it on purpose, but sometimes they don't think of the effect on patients before they start talking or revealing information. The result is some pretty violent valleys and peaks.

Right after my first operation, the hospitalist probably said "the cancer is out, the lymph nodes are negative, and you may not even require chemotherapy". I heard the "not require chemo" phrase, but didn't parse the rest of the statement. I spent about a week thinking no chemo (Peak.) before the oncologist set me straight. Valley.

Prostate specific antigen (PSA) measured at 4.0 or higher is an early warning of prostate cancer. PSA is non-linear, however and seems to be an undependable indicator. One of the blood tests just after the first operation showed a PSA spike to over 21. The surgeon said it was unlikely to be related to the operation. Valley. The oncologist said it probably was related to the operation. He ordered additional blood tests and the PSA returned to close to pre-operation level. Peak.

The evening before I was to leave the hospital after the second operation, a doctor whose role was never quite clear to me popped in to say she had been going over x-rays from the first operation and saw a white spot on one lung. We discussed the possibilities (postpone release, biopsy, cancer) and she ordered an immediate CT scan. Valley. The CT scan showed the lung was clear and the x-ray was probably flawed. Peak.

A double dip involved liver numbers. After the second operation I had a blood test leading up to an appointment with my primary care giver. He was shocked by liver numbers out of range. A second test was even worse. A third test and a liver ultra-sound were ordered. Valley. Doctor called after the third test and said the numbers were back close to in range and I could cancel the ultra-sound. Peak. However, the oncologist saw the numbers and had a long discussion with me about the liver being a filter that might be gathering any cancer cells that escaped the surgery. We talked of surgery to remove anything that might be starting there. He ordered a liver CT scan. Valley. The CT scan showed a tumor-free liver. Peak.

And not really a valley, but more of a parting shot. After announcing the CT scan showed a tumor-free liver, the oncologist said, "Oh, by the way, you have a kidney stone". Zing!

Funny Spots Dealing With Colon Cancer

As I said in "Bad Spots", very few of the experiences associated with colon cancer can be thought of as bright spots, but to anyone with a sense of humor, there were some "Funny Spots".

Funny - The Colostomy

The colostomy puts one in closer touch with one's "inner workings" than I think we are meant to be. Lack of control over those "inner workings" puts other folks in closer touch than I think they are meant to be. Noises and sudden bulges, while embarrassing, can usually be covered by a cough, conversation, and/or rearrangement of clothing or position. By and large, people (closest family notwithstanding) are tolerant and understanding and forgiving.

It was when I was alone with my "inner workings" that I had my biggest laughs. I never became accustomed to the loud reports that increased the size of the bag and I often jerked spasmodically when they occurred. I was amused by the more subtle releases that interacted with the bag for a rhythmic rattle. I experienced some of the ghost feelings that amputees report when my lower body missed its natural morning's morning. I was sometimes amazed by quantity. I had no idea how quality varied. I was shocked by the odors. I developed great empathy with caregivers of persons requiring diapers.

I was fortunate to have the colostomy for a limited time. I didn't have it long enough to train my bowels, so output was unpredictable. At home, I showered regularly, usually with the bag removed and the wafer in place, but every three or four days when the wafer needed changing, I showered with the bag and wafer removed. Occasionally I felt "vulnerable" and left both the bag and wafer in place. I tried to choose a time for showering when I thought my bowel would be inactive, but as I said, output was unpredictable. On just a couple of occasions, I was blessed with a small "offering" on the shower floor or on the bathmat. What could I do? I laughed.

Funny - Simple Things

My emotions were very close to the edge during the early recovery from the first operation. Let's just say I didn't suffer from dry eyes. Phone calls and visits easily brought on tears, especially as I talked about my experiences. A couple of other episodes are a little harder to explain.

When I first became aware of my surroundings in the hospital room, I found that I was in a two-bed ward and I had won the window bed. I hunched up a little and looked outdoors and started crying. I was on the 4th floor of the hospital on the mauka side. The view was of the west Maui Mountains and across Wailuku right into the Iao valley! It was spectacular! I spent hours looking out the window, wouldn't let them close the blinds when the sun was on that side, watched the sun go down behind the mountains every night, and then watched the last few rays rattle around in the valley mists. It still brings a lump to my throat.

Another one. After all the eating "issues" before and after the first surgery, one magic day an orderly brought in a tray with a covered plate. I made a rule to always sit up in a chair for meals for better digestion, but needed help in the early days to accomplish that. While getting arranged, I kept eyeing that cover. When I finally got in the proper position, I removed the cover to see a real fried egg, a fake sausage patty, and a scoop of rice. I cried, but dug in. That was the first chewable food in way too long and I finished every morsel!

I guess a brush with mortality gives one a different outlook. I know simple things like a good shower, food and an appetite to eat it, walks in the great outdoors, sunsets, talks with friends and family, and Maui nei mean more to me now than ever before.

Funny - Student Nurses

My brush with mortality didn't change all of my personality. The Pono with little horns on his head is still around.

The hospital has an agreement with the local community college to allow student nurses to get some hands on practice. I was recipient of care from several of these nurses and they deserve to be treated well. One of them held my hand all through the removal of the vacuum bandage, bless her.

However another one was assigned to determine my mental state. This was too much of a challenge for Pono. She asked my name. I looked at my bracelet and said I'm either Norm Sandin or xx yy (the surgeon's name). She smiled. She asked if I knew where I was. I said I think I'm somewhere between the gates of heaven and the gates of hell. With a little coaxing I named the hospital. She smiled. She asked if I knew what day it was. I said it was a day that will live in infamy. Poor kid was born forty-some years too late to experience it and had no idea what I meant. I finally shed my horns, explained that it was Pearl Harbor Day, and proceeded to cooperate with the rest of the exam. Pono is ashamed - a little.

Funny - Ostomy Supplies

The wafer and bag associated with dealing with the colostomy are devilishly clever and pretty simple to deal with, but they suffer from PLAIN. An absolutely hilarious conversation one evening revolved around supplies with colors, patterns, shapes, personalizing, odor spritzers, temperature equalizers, etc. It is impossible to reproduce the ridiculousness of it all here, but I hope you can imagine some of it. We went so far as to imagine Pono as the King of Ostomy Supplies.

The cap came a week or so later when one of the participants sent me an e-mail link to a site that actually advertised "colostomy cozies"! Too late again.

Funny - Percent Sign

During recovery from the first surgery, I removed the colostomy wafer one morning and jumped in the shower for a good wash. Parallel to the shower doors and across the bathroom is a closet with mirrored doors. For some reason that day I caught my image in the mirror and broke out laughing. Surgeons over the years had left me with a perfect percent sign on my belly. The appendectomy, further traumatized by the cecostomy formed a circle, the "big wound" formed the slash, and the stoma formed another circle. Perhaps it looked more like "o | _o" but I like to think of it as "%" (remember I was seeing it in the mirror).

Loss of weight, the reattachment operation, and time have made further changes. A close look today, without the mirror, would be more like "_ | –" or even "_o | –", but I'll always remember the percent sign.

Funny - Sponge Suckers

One day, just for fun, when you really feel thirsty, cut a 3/4" square off a sponge, put it on a skewer, add about four drops of water, and suck it. You know, some company actually makes these things, and the hospital had an oversupply of them. After the second surgery, I was OG (nothing by mouth) again and these things were offered. I accepted, and I must admit, the tiny bit of moisture on the back of my tongue was helpful.

After the first surgery they gave me a thing that was more like a big Q-tip with four drops of water. Can't help but wonder what other implements of torture these companies sell.

Funny - Those Wonderful, Tolerant Oncology Nurses

I think I mentioned elsewhere attaching a false mustache below my implanted port when I went in for chemo one time. That started a habit that went on throughout the 12 doses. I was reluctant to mark on my body or contaminate the area around the port, but I did put slogans and little messages over the port that were easily removable. Here are a few that were left over.

DEBI DOES PORTS

'E MĀLAMA KINO

FIGHTING C WITH ATTITUDE

"ONC" IF YOU HATE CHEMO

ANY PORT IN A NORM

Debi was one of those wonderful people. 'E mālama kino means take care of your body. It pleased me to make those folks smile. They deserve so much more!

Funny - Fingernails

During chemotherapy it seemed that my fingernails grew very rapidly. I didn't really measure their progress, so maybe it was just that I was sleeping more and days were going by "faster" than usual. Anyway, it seemed that I had to cut my nails more often. I suppose it could also have been that the longer the nails, the more the fingers tingled. Whatever the cause, I was forced to examine my nails more often as I cut them.

As chemo neared the end, I noticed something strange. The nails had developed little ridges or stripes across the width of the nail. The stripes were alternately lighter and darker and I estimated about 1mm per stripe. The theory I developed was that the infusion of chemicals caused one of the colors and the recovery period between infusions caused the other color. Once chemo was over the stripes eventually grew out.

If anyone ever reads this and has had a similar experience, I BEG you to write and tell me!

Funny - Leg Massagers

I'm not sure where to put this item since my attitude about it changed over time, but let's try it here.

During the self-examination after the first surgery, I found something moving around my legs. These padded devices were wrapped around both legs and they were kind of kneading the muscles of the lower legs. It was really kind of sensuous and relaxing. On inquiry I found that they were leg massagers intended to enhance circulation and prevent blood clots. I lay back, relaxed and enjoyed.

But then after a while I realized that the evil hospital attendants thought that if a little mauling was good, several days of it would be even better. It got old awfully fast, especially if I was trying to sleep. I humored them when they felt they needed to strap me in, but I soon learned how to extricate myself from that torture device.

After the second surgery they started using them again, but my fussing and fuming led them to discontinue their use. So, are leg massagers a funny spot or a bad spot?

AFTERWORD

This P-gram is the fourth of a set of four that cover my experiences from the end of 2004 through much of 2005. This one wraps up my personal views on the process. Here are the four if you care to review them:

#129 Colon Cancer Surgery

#130 CC – Reattachment

#131 CC – Chemotherapy

#132 CC – Personal Review (this one)