tag:blogger.com,1999:blog-8864632685627620462024-03-13T13:58:08.882-04:00Soayacs: Stories of a Young Adult Cancer SurvivorTales and insights from a 37-year-old colon cancer patient about dealing with cancer as a young adult.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.comBlogger64125tag:blogger.com,1999:blog-886463268562762046.post-42571458621530397432010-08-30T11:03:00.001-04:002010-08-30T11:04:46.386-04:00175,000 caloriesI had surgery on August 3rd and the doctor successfully bypassed my bowel obstruction. The problem was mainly radiation damage to a section of small intestine, rather than a bellyful of tumors like almost every doctor assumed. In fact, he couldn't find any new tumors in my abdomen. So now I can eat again!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib4XVaehGXUmbaD4w-EP2dmUREzbUk4v4QbOu9pI5FhjZeKkvspodMmwaFGIjLGzfrsG-cVrAKU7MD7-OHdao_0veyOMk5xT2ZuJ3mN3U96Gf0exBlR77EQQ7oy5oGq0VU5DxVaVJDScQ/s1600/175K+Calories+Flex.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib4XVaehGXUmbaD4w-EP2dmUREzbUk4v4QbOu9pI5FhjZeKkvspodMmwaFGIjLGzfrsG-cVrAKU7MD7-OHdao_0veyOMk5xT2ZuJ3mN3U96Gf0exBlR77EQQ7oy5oGq0VU5DxVaVJDScQ/s400/175K+Calories+Flex.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">115 Pounds (August 2010)</td></tr>
</tbody></table>I am terribly thin, though. During the months of starvation I lost about 50 pounds from my previous weight of 165 pounds. And while on intravenous feedings I barely maintained what weight I had left. So the doctor's orders are to gain those 50 pounds back.<br />
<br />
Since it takes 3,500 calories to gain one pound<a href="http://www.bmi-calculator.net/bmr-calculator/harris-benedict-equation/calorie-intake-to-gain-weight.php">*</a>, that means I need to take in 175,000 calories above and beyond the 2,500 calories per day it takes just to maintain weight. If the doctor wrote a prescription for all those calories, it might look like one of these:<br />
<br />
<ul><li>650 McDonald's hamburgers</li>
<li>1,200 Stonyfield Farms Strawberries & Cream yogurts</li>
<li>1,500 Quaker Chewy Chocolate Chip granola bars</li>
<li>4,400 Thin Mint cookies</li>
</ul><br />
It's a bit of a struggle to eat all those calories right now. With the shortened digestive system and organs that aren't used to seeing food, whatever I eat tends to pass through quite quickly. Some meals seem to exit into my colostomy pouch in just 12 hours – not much time to absorb all the calories and nutrients. And my stomach has shrunk from months of disuse, so I can't eat much at a time to begin with.<br />
<br />
But I'm tired of looking like a skeleton, so I'm working at putting on weight – eating whatever sounds good and getting some light exercise walking and playing Wii.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com24tag:blogger.com,1999:blog-886463268562762046.post-58578307542161121532010-06-02T21:10:00.001-04:002010-06-02T21:11:08.739-04:00State of the BodyI figure that my 37th birthday is a good time to take inventory of the state of my body. It's gotten more complicated with accessories lately to compensate for damage done by the cancer (and friendly fire from the treatments).<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTN39EzNRephWJFLU8KsPaZ8Bz0RPbeMs4By4HHfWTnu9MFR1zan2PvEJ_Zuwnh0HsluCHPPbi39Td30XdjYF850HJcuOGsY_FrlaDc95TUvo-1DwIJyVYXL5PXX7m2ePjrLOaUo9kR0Y/s1600/37th+Inventory.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTN39EzNRephWJFLU8KsPaZ8Bz0RPbeMs4By4HHfWTnu9MFR1zan2PvEJ_Zuwnh0HsluCHPPbi39Td30XdjYF850HJcuOGsY_FrlaDc95TUvo-1DwIJyVYXL5PXX7m2ePjrLOaUo9kR0Y/s400/37th+Inventory.jpg" width="282" /></a></div><br />
<b>Left shoulder</b><br />
<b><br />
</b><br />
I've had a mediport since shortly after diagnosis in 2004 to make it easier to get chemotherapy. Instead of going through arm veins, I have a metal disc placed under the skin with a tube leading into the largest vein entering the heart. This saves the smaller arm veins from being burned by the drugs and simplifies the poking needed to get an IV line going.<br />
<br />
Recently I upgraded to a two-disc port so that I can have two IV lines running at the same time without worrying about whether the drugs are compatible for a single line. The bottom line is now devoted to intravenous feeding. I have a small bowel obstruction that prevents food from completing its passage through my digestive system. So anything I try to eat comes back up, accompanied by terrible cramps and nausea. I lost forty pounds while we tried dietary changes to sneak something through the obstruction, but nothing helped. So since I can't eat anything, I'm not receiving total parenteral nutrition (TPN). Every night I get hooked up with a two-liter bag containing all the essential nutrients, and the contents are infused for twelve hours then disconnected in the morning.<br />
<br />
The second mediport is being used for continuous infusion of 5-FU. My CEA is sky high again, so we started this chemotherapy to try shrinking whatever tumors are around and hopefully reopening my bowel to digestion. I've done well on 5-FU-based therapies in the past, so perhaps this will work well. I carry a portable pump that infuses the drug very slowly, twenty-four hours a day for four weeks in a row.<br />
<br />
<b>Belly</b><br />
<br />
Since anything that enters my small bowel gets pushed back to the stomach for emesis, I had a gastrostomy tube installed to let those contents drain without the unpleasantness of vomiting. I can pop open the tube to let the stomach contents drain by gravity, or I can hook up a non-portable suction pump to pull out the contents and try to relieve cramps and nausea. It's been somewhat successful, but it can be painful, leaky, and an annoyance to care for.<br />
<br />
Below the G-tube is my colostomy. I used to think that having an ostomy was a terrible burden in itself, but compared to my newer accessories it's actually fairly simple and habitual to care for. There's not much output of stool since my small bowel is blocked. It's mostly just fluid that the small bowel produces to try clearing the blockage. The biggest annoyance is managing my weekly wafer change with all the other tubes flopping around and tying me to various pumps.<br />
<br />
<b>Pelvis</b><br />
<br />
After all the radiation I received, there's not much left working in the pelvis. I can barely feel by bladder, so I have to go to the bathroom regularly during the day to avoid leakage. When I'm sleeping I can't feel the urge at all, so I have to wear Depends pads to catch the leakage. Still, there are accidents when the pads aren't positioned just right or if I fall asleep before putting them on. So I have a big stockpile of pajama bottoms to change into whenever I have an accident.<br />
<br />
The sexual function of my penis is pretty non-existent too. I haven't had an erection in months, and the last ones I had were with the help of Cialis. My libido is at zero right now too, probably due to the starvation that led me to needing the IV feedings. With all the tubes I have dangling from my body now, I don't think I could use an erection if I got one.<br />
<br />
<b>Summary</b><br />
<br />
It takes a remarkable amount of work and technology to keep me alive and comfortable now. Actually I'm not very comfortable, still suffering from lots of abdominal cramps, nausea, and vomiting. We're trying various medications and drainage techniques to alleviate those. Oxycodone has been a friend to at least ease the pain. But the nausea and such is still too much to let me read, write, or drive comfortably.<br />
<br />
I'm still processing the losses that these changes have brought. Being unable to eat is an enormous blow to a common source of happiness and a ubiquitous social activity. I imagine it's possible to live without eating, but it seems to be far from a normal existence and will be a challenge to accept. The mess of tubes and loss of penile function is a blow to any romantic interaction. And the burden of maintaining all these accessories and their functions is a drain on the limited energy I have left. My goal is to at least find fulfillment in work and intellectual activities. But at the moment those are beyond my capabilities.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com17tag:blogger.com,1999:blog-886463268562762046.post-45525933175192490302010-04-26T15:04:00.001-04:002010-04-26T15:04:24.398-04:00Bowel obstructionsI haven't been eating well. On New Year's Eve I bought a bunch of snacks to eat while we waited for midnight, but after a couple slices of pizza around 7 o'clock I was full and my appetite didn't return in time to enjoy all the munchies.<br />
<br />
A few days later I had terrible abdominal cramps. I've had them a few times in the past several years and found they were caused by intestinal blockages. What happens is that some stool in my colon gets too dry and hard, digested food backs up behind it and the cramps are failed attempts by the intestines to push it all out. Those episodes were solved with saline enemas, so I tried that again, got things moving, and felt better.<br />
<br />
But a few days later it happened again. I'm afraid that it's harmful to do frequent enemas (and it's tricky to do enemas without a rectum), but I administered another one and cleared the problem again.<br />
<br />
The obstructions kept repeating. Now I didn't have feelings of constipation, just bloating, intestinal gurgling, and nausea. Rather than ending with a stubborn bowel movement, these episodes ended with vomiting.<br />
<br />
Such problems are common with patients like me. Abdominal surgery, chemotherapy, and radiation can all lead to scars and inflammation that prevent the intestines from moving normally and resulting in obstructions. My doctors recommended managing the problems through diet – low fiber, low residue, stool softeners, avoiding bulky foods like raw vegetables or nuts.<br />
<br />
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Yet the obstructions continued. I went to the emergency room, and after a CT scan they diagnosed me with a small bowel obstruction. They put in a nasalgastric (NG) tube to suck out the stomach contents so the bowels could rest for a few days. During five days in the hospital, they transitioned me back to soft foods and sent me home. Then just a day later I obstructed again.<br />
<br />
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I was getting desperate since I was losing weight rapidly and wasn't accomplishing anything in my life except struggling to eat, feeling sick, lying on the couch, watching TV, and waiting to get better. So I contacted the abdominal cancer specialists who did my big surgery in December 2008 to see if they had any solution.<br />
<br />
They were reluctant to operate since they said it's very risky to operate on someone with such an extensive history of treatment as me. If the root cause is scars from previous surgeries, then another surgery is as likely to cause new problems as to fix existing ones. And the doses of radiation since my previous surgery could change the tissues and prevent them from healing properly.<br />
<br />
But I couldn't simply continue failing to eat and losing weight, so they admitted me to their hospital to prepare for surgery. I went on a clear liquid diet plus Ensure (a nutritional supplement drink) while we did some gentle bowel preparations over the course of a few days. We also tried putting me on total parenteral (TPN) intravenous nutrition for three nights. During that week I didn't obstruct again, so the surgeons decided it was better to send me home on a diet of Ensure and go searching for an effective chemotherapy. From their perspective, if I could live without surgery it was better not to risk it.<br />
<br />
So I continued that diet at home (without TPN) yet continued to lose weight. I added some simple foods like crackers and low-residue cereals which certainly helped stimulate my appetite. But then I began having episodes of obstruction again and continued to lose weight.<br />
<br />
My radiation oncologist doubted that these obstructions were symptoms of his radiation treatment, so the prime suspect has become cancer itself. I met with a team of doctors at NIH about enrolling in clinical trials, but most of their drugs are oral so my inability to eat reliably makes me a poor candidate.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH3KRTIHXAMZDWMcY9aue5pJ8JWvJdzFBMg55MChtNnFVogy_9BAPXnsn55AU-Ys4FldXd5OHPvPI_dUrvkjuj4X5I6RCfvbgxoWYjLIlvMhIcqx14Mr4x-Ah3AS8f7uEFiqZR8mECyCw/s1600/Dec2009.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH3KRTIHXAMZDWMcY9aue5pJ8JWvJdzFBMg55MChtNnFVogy_9BAPXnsn55AU-Ys4FldXd5OHPvPI_dUrvkjuj4X5I6RCfvbgxoWYjLIlvMhIcqx14Mr4x-Ah3AS8f7uEFiqZR8mECyCw/s320/Dec2009.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="color: #073763;">December 2009</span></span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="color: #073763;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVz-yOZR4TCkcNjShL0gUjZTDhgl-ccl4_P1Apl0G8XXLmh1BeZSvnYdQ1EC22vRLB1aOzZIVfmHEdHfwkeXkV8-sN5yET6qEtra5O6jZHt_0xYU4d4N9U5NI8SGRlJa8__srsGDHY4fs/s1600/Apr2010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVz-yOZR4TCkcNjShL0gUjZTDhgl-ccl4_P1Apl0G8XXLmh1BeZSvnYdQ1EC22vRLB1aOzZIVfmHEdHfwkeXkV8-sN5yET6qEtra5O6jZHt_0xYU4d4N9U5NI8SGRlJa8__srsGDHY4fs/s320/Apr2010.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="color: #073763;">April 2010</span></span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="color: #073763;"><br />
</span></div>In April my medical oncologist finally decided that we had to do something other than let me continue to starve and wither, so we started chemotherapy with continuous intravenous 5-FU.<br />
<br />
So far I've received two weeks of chemo and tolerated it okay, but I'm continuing to suffer obstructions and lose weight. I fear that we'll have to take more drastic steps to get nutrition if this continues. We might set up for home TPN, receiving intravenous feedings at night. But that sounds like a lot of work and inconvenience, making me even more homebound and preventing me from engaging in the travels that are so important to my happiness.<br />
<br />
Currently I'm trying the medication Reglan to try getting my intestines to push in the right direction and allow me to get enough nutrition the old-fashioned way.<br />
<br />
I want to eat.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com10tag:blogger.com,1999:blog-886463268562762046.post-76648397065167054442010-04-10T03:49:00.004-04:002010-04-10T03:51:30.216-04:00Life lostBy early 2008, I had endured 18 months of chemotherapy with Xeloda. My CEA was down to normal and my scans were clear. When my CEA came back up a bit, we decided the chemo had done all the good it could and it was time to set me free. We would just watch closely and hope that cancer would stay away, at least for a while.<br />
<br />
It felt great to get away from the grind of chemo. I didn't have to plan my activities around good weeks and bad weeks. I didn't have to avoid favorite foods on chemo days to prevent making bad associations. I had more time and energy, my mind was clear, and I could plan for the future: projects to accomplish, advancing my career, traveling around the world, and pursuing romance as a normal man.<br />
<br />
Just a few months later I got bad news. My CEA was not rising gradually but shooting rapidly into the danger zone. And my scans showed new growth – a tumor had resisted all the chemo drugs and was expanding without restraint.<br />
<br />
I cried upon receiving that news – something I had rarely done through all my dealings with cancer. The physician's assistant assured me that the doctors had not given up on me; there were still more treatments to try. She must have thought that my tears were from a fear of death. And I should take comfort that there might still be ways to avoid that fate.<br />
<br />
But really I cried for the loss of life. The loss of living. I knew that returning to treatment meant more hardships from chemotherapy, the loss of time, and the loss of vigor. Death is inevitable and I do not fear it, but I have things to do before it comes. I cried because I was losing those plans for my future – productivity, strength, happiness, love.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihzceKJ4dULuF6aWrsAQ-bHRne9hA2Wn5scY9D1v5HoEXA2OuLX0u8yDriEiUzpTWK1ojJMypnQ3znIGzVbwX2tdHnl4GvRbU3RXygboK9zW9HSHbd8ZgV-ftRHN4g8wm0Ji09OBgT0C4/s1600/Stormy+Horizon.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihzceKJ4dULuF6aWrsAQ-bHRne9hA2Wn5scY9D1v5HoEXA2OuLX0u8yDriEiUzpTWK1ojJMypnQ3znIGzVbwX2tdHnl4GvRbU3RXygboK9zW9HSHbd8ZgV-ftRHN4g8wm0Ji09OBgT0C4/s320/Stormy+Horizon.jpg" width="320" /></a></div><br />
We eventually fought that recurrence with surgery. And when we found that some remnants had survived, we scorched them with radiation. I have been living free since then – watching closely, hoping for a long break from cancer, and planning for the future.<br />
<br />
But now my CEA is back in the stratosphere. Though we haven't identified a specific tumor on scans, I have been experiencing bowel obstructions and greatly increased pain. It seems that cancer is back in my life and ready to fight.<br />
<br />
I start a new course of chemotherapy on Monday.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com4tag:blogger.com,1999:blog-886463268562762046.post-4467483131113225162010-01-19T18:21:00.001-05:002010-01-19T18:24:31.295-05:00Ostomy care for sensitive skinMy skin is sensitive to many adhesives, solvents, and fragrances. So it's been a challenge to keep my skin happy now that I have an ostomy again. I had lots of problems with itchy rashes and irritation with my previous ostomies and during the first couple months with this one, but now I've come up with a routine that keeps my skin happy.<br /><br />I change my wafer every 6 to 8 days. It hurts to pull it off, so I soften the adhesive my smearing petroleum jelly on the fabric mesh area an hour before I shower. I let it soften up more with warm water while I do my usual showering. Then I slowly peel it from the edges and help it separate from my skin and body hairs by wiping the interface with a soft facial towelette. I typically use sensitive-skin Dove or Oil of Olay towelettes, the kind that are packaged dry and get sudsy with water.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCa1ZtXGQtyRcsQyd1mBgdW6tpu14-p47_FicOroA-6G06QndpAGDwkX_GJgIWQfl-tnhHGM21yVSAuB9PsoKAHI5s2umuUoD1FbcDGXckZfDEuCLJ_Gtnrnpl9E4_JqkaG5Sx_B2gxI0/s1600-h/Sensitive+Skin+Care.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 306px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCa1ZtXGQtyRcsQyd1mBgdW6tpu14-p47_FicOroA-6G06QndpAGDwkX_GJgIWQfl-tnhHGM21yVSAuB9PsoKAHI5s2umuUoD1FbcDGXckZfDEuCLJ_Gtnrnpl9E4_JqkaG5Sx_B2gxI0/s400/Sensitive+Skin+Care.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5428594886023190594" /></a><br />After the wafer is off I let any residues soften up with a couple minutes of warm water over the area. I don't let the water get too hot, though, because I figure that the exposed colon is more delicate than skin. So I try to stay close to body temperature. After the previously covered area has had a good rinse, I get a fresh washcloth soapy with unscented Dove and gently rub the skin to get off all the adhesive and petroleum jelly. I also run the edge of the washcloth along the base of the stoma to remove any residue that built up there.<br /><br />After a couple of good washes and rinses, I stay in the shower a few minutes longer to let the skin relax and breathe. Then I dry off and dab the skin in the area with another clean, dry washcloth. My new stoma is a couple inches long and hangs down when I'm standing, so I move to my bed where it's in a better position to apply the new wafer.<br /><br />I like to let the skin air dry for at least fifteen minutes so it's not too pink and raw when I put on the new wafer. I have the wafer opening already cut and then I apply the Adapt paste around the inner edge while I wait. I apply enough paste to cover the few millimeters of exposed skin between the stoma and the semi-rigid wafer. The paste protects the skin from the colostomy output, but the solvents in the paste can also irritate my skin. So I let the paste air out for ten minutes before putting the wafer on.<br /><br />When the skin is dry and the wafer is ready, I carefully position it to center the stoma in the opening. If the stoma hits against the edges then it'll be uncomfortable as it changes size when stool moves through. And if the gap is too big then skin will be left exposed. I try to keep my belly at a natural position as I stick on the fabric part of the wafer. If I suck in my gut too much then it'll pull when my belly gets full. And if I stick it out too far then the fabric will wrinkle and come loose when the skin contracts.<br /><br />This routine has been keeping my skin happy and the wafer secure for at least a week at a time. I can usually feel the edges of the fabric and the inner semi-rigid parts loosen up when it gets close to the next changing time. It would probably stay on for longer, but I don't think it's a good idea to leave the area covered and uninspected for much more than a week.<br /><br />There are various protective skin gels and powders that the ostomy suppliers sell, but every one I've tried has given me a bad and worsening rash. So I find that the best method is to be slow, gentle, and clean. The one exception is when I have a surgical wound or ulcer under the wafer. Then I cover it with Aquacel Ag, a soft fabric that acts like an artificial scab and lets the skin heal without getting further damaged by the wafer. At those times I changed the wafer more often, every 4 to 5 days, to prevent the Aquacel from stewing too long and to check on the healing.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com9tag:blogger.com,1999:blog-886463268562762046.post-86220478782850016522010-01-15T15:09:00.004-05:002010-01-15T15:54:50.052-05:00Uncertain healthLast summer I wrote about my rising CEA levels as I searched for the best treatment option:<br /><br /><a href="http://soayacs.blogspot.com/2009/06/those-fiendish-cells.html">Those fiendish cells</a><br /><br />Now that I've finished another round of radiation and had some time to heal, I have another update on my CEA timeline.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIn-mLa0WU0aRKdtD5VTrs11XgiYIiT5ho46fUaitG2iKPNO5JI9MA3nd9tj1yPkds9fpX9Yn1q5VcvfUznEwtlifyxlSnDKwZ9iJUmgW5Rj0HvfoO-MqW73Hl9O0JlyX-jmzoL5MnRhc/s1600-h/CEA2010.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIn-mLa0WU0aRKdtD5VTrs11XgiYIiT5ho46fUaitG2iKPNO5JI9MA3nd9tj1yPkds9fpX9Yn1q5VcvfUznEwtlifyxlSnDKwZ9iJUmgW5Rj0HvfoO-MqW73Hl9O0JlyX-jmzoL5MnRhc/s400/CEA2010.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5427061610768387282" /></a><br />My CEA fell after radiation, but not fast enough to suggest that it was heading back down to normal levels. Now it looks like it's rising again, indicating growth of tumors somewhere in my body. As usual, variability in measurements and benign conditions could also cause a rise in CEA. But it's enough to put us on closer watch for any bad guys.<br /><br />My scans in December were too messy to declare anything definite. The masses in my pelvis showed elevated metabolic activity, but that could be from the radiation itself. The best news was that nothing new was showing up there. My lungs, however, showed some nodules that could become problems in the future.<br /><br />Overall I'm feeling pretty good. I have a variety of nuisance symptoms including lingering bone pain, fatigue, urological misbehavior, and a fussy tummy. But I'm trying to press ahead with normal life and hoping that I can avoid or overcome any further problems.<br /><br />Planning for the future is tricky with such uncertain health. As long as my body keeps running my mind must find ways to keep it fed, sheltered, and repaired. Financially, I'm faced with two choices: find a way to earn enough money to live where I have professional, social, and medical opportunities; or give up work completely and find a quiet place to retire and expire.<br /><br />I am heading down the first path, committing myself to be productive and engaging in the activities that are sensible if I have a long future. But I am becoming familiar with a stress that's characteristic of chronic cancer – the knowledge that disaster could strike again any day and spoil my best laid plans.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com6tag:blogger.com,1999:blog-886463268562762046.post-11886098370916862872009-12-10T09:33:00.006-05:002009-12-10T09:59:06.569-05:00UnenlighteningI am now three months post radiation therapy, which was given as followup to a big surgery, which was followup to chemotherapy, which was followup to earlier radiation, which was followup to a previous massive surgery, which was followup to the first round of chemotherapy, which was followup to the first surgery, which was followup to finding a scary tumor during a colonoscopy, which was followup to years of telling doctors that I had rectal bleeding and nausea.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiByVc2gT8D-XHmAP0cC6-nLy9XcMt4omEAL0YQoDr-tWogdEDKrEhI4CuQJ0JiRiBohzdYV5hshpPMOKIZIvHUqCnKeEflrTDE_24-h7f2k7bs9J9Dc5QII0c0_434_ETU0WKxHreLfpQ/s1600-h/Unenlightening.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiByVc2gT8D-XHmAP0cC6-nLy9XcMt4omEAL0YQoDr-tWogdEDKrEhI4CuQJ0JiRiBohzdYV5hshpPMOKIZIvHUqCnKeEflrTDE_24-h7f2k7bs9J9Dc5QII0c0_434_ETU0WKxHreLfpQ/s400/Unenlightening.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5413621457065797362" /></a><br />So I had another set of PET/CT scans to see how successful this has all been and check whether I need to follow up with yet more treatment. There are a few reports that one might expect at this point:<br /><br /><span style="font-weight:bold;">Enlightening</span><br /><blockquote>You are healthy and we don't see any problems. Go home and enjoy the holidays!</blockquote><blockquote>You have a problem here. Let's get moving on taking care of it.</blockquote><br /><span style="font-weight:bold;">Unenlightening</span><br /><blockquote>You might have problems, but we don't know what they are. They might get worse. We can't do anything if they do. Maybe somebody else can, but who knows? Enjoy the holiday!</blockquote><br />I got the unenlightening report this time. Having seen my own scans, I realize that it's too much to expect a clean bill of health. I'm such a mess inside that it's beyond the capabilities of modern medical science to decipher just what's in there. The best gauge of how healthy I am is how I feel. But my worry is that I don't feel good enough to be in the clear.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com8tag:blogger.com,1999:blog-886463268562762046.post-16937330563259880572009-11-04T20:44:00.005-05:002009-11-04T21:03:31.052-05:00Deferred maintenanceAfter skipping any visits to my dentist for three years, I've been giving him a lot of business in the weeks since finishing radiation.<br /><br />Dental care is the kind of thing that gets neglected during cancer treatment. During times when I was undergoing chemotherapy and suffering from nausea, the last thing I wanted was to experience the sounds and smells of another medical office and to have people sticking fingers and instruments in my mouth. While I was recovering from surgery I was too weak and tired to spend my limited energy on something as easy to postpone as a checkup. And when I went through radiation, I was in too much pain to sit in the dental chair for an hour and too busy driving to the hospital every day to get zapped.<br /><br />I had a couple breaks between treatments. When I finished a long course of chemotherapy in the spring of 2008 and hoped to be done with treatment forever, I started catching up on all the deferred maintenance of my body and my life. I had my hearing checked, got eyeglasses for the first time, had my car's tires rotated, began digging through piles of mail, and spent more time with friends and family. Unfortunately that break was short-lived and a few weeks later I was right back in chemotherapy trying to stop the growth of tumors that were advancing in spite of drugs that had decimated them before.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_iCBQ7WW3bJt28SYoqjVa37ZdQNz_L-xxDvA5GjIUBuZjXjgQqSzOzbuAJkrF6eLBn-nHg1BDwg2Uv7rpSFPu9O8MzmKKJ4LempWsfxzQsdM7I818VbKAkWZLKxnS13WSTWjftVzmzKo/s1600-h/Crooked+Fence.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_iCBQ7WW3bJt28SYoqjVa37ZdQNz_L-xxDvA5GjIUBuZjXjgQqSzOzbuAJkrF6eLBn-nHg1BDwg2Uv7rpSFPu9O8MzmKKJ4LempWsfxzQsdM7I818VbKAkWZLKxnS13WSTWjftVzmzKo/s400/Crooked+Fence.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5400429533169552690" /></a><br />In the spring of 2009 I had the same experience. Just as I was recovering from surgeries enough to take care of domestic responsibilities and personal ambitions, a tumor stabbed me with pain and threatened my ability to walk. I had to put all of my personal care, job hunting, and travel on hold again to focus on fighting back against the cancer as quickly and strongly as possible.<br /><br />It's easy to justify putting off tasks like dental care and clothes shopping when you're in survival mode. Do I really need to keep my teeth healthy for fifty years when my body is struggling to stay alive for one? Do I really want to spend my limited cash on a new suit or pair of boots when I'm not likely to have many chances to wear them? I'd probably rather spend that money on a good meal or a short trip – things that I can enjoy today.<br /><br />What happens when you go through another battle, focusing on the moment, and then emerge on the other side (a bit to everyone's surprise) alive and productive again? My dentist told me when I returned after that long absence that when he first learned of my cancer he thought he might never see me again. When all of your strength and more is taken just to fight off death, you can be left unprepared for life.<br /><br />It certainly takes a shifting of gears. I've heard that depression is common in cancer survivors. They get through treatment okay on adrenaline, determination, and lots of attention and support. You might expect them to have nothing to do but celebrate when treatment is over. But they can be left directionless, with a war to clean up after and time to finally realize just how much the battles have cost them. They might expect to feel normal and healthy but learn that the body doesn't heal all wounds the moment that injuries stop.<br /><br />Then there's the lingering fear of recurrence. When we first put my cancer in remission, I hoped that was the end of an intense but brief battle and I was excited to face the future. When the cancer came back I was annoyed but ready to fight and hopeful that a new set of drugs would clear it out. After a couple more repeats of remission and recurrence, it's hard to get excited and optimistic for the future.<br /><br />When I was in treatment I was doing something active to get better. But now I'm out of treatment and relying on my body to keep itself healthy. It's track record doesn't give me much confidence. I'm having a hard time reassuring myself that this remission will be any longer than the others.<br /><br />I'm still trying to act as if it will be. To be cured seems too much to hope for, but a year or two without any recurrence would be a delightful change from the past several years. I certainly have plenty to keep me busy including deferred maintenance, relationships, travel, projects, and a career to resurrect.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com3tag:blogger.com,1999:blog-886463268562762046.post-63293521758560929812009-09-14T17:23:00.004-04:002009-09-14T18:30:53.944-04:00CyberKnifeToday I finished a course of radiation with CyberKnife. The target was a tumor at the front of my pubic bone. The tumor showed up on PET/CT scans in May. It was a bit of a surprise since it wasn't noticed on previous scans or during my big surgery last December. Unlike the tumor near my tailbone it wasn't painful either and wasn't causing any notable symptoms, but we wanted to zap it before it did become a problem.<br /><br />After getting CyberKnife to my tailbone and conventional radiation to the rest of my pelvis, I went to an interventional radiologist to have fiducial markers implanted. CyberKnife uses live X-ray imaging during treatment to aim precisely at the tumor, even if it moves day to day or with breathing and digestion (unlike conventional radiation which aims at a wider area based on landmarks on the surface of the body). For my tailbone, the bone itself and metal staples left from surgeries acted as beacons for aiming. But this tumor was in soft tissue so I needed tiny gold springs implanted with a long needle while I was sedated. Then, after waiting a week for the wounds to heal and the markers to settle, another CT scan located the markers relative to the tumor so that the CyberKnife could be programmed.<br /><br />Two advantages of CyberKnife are that it is targeted more precisely and the targeting responds to internal movement. Another advantage is that the therapeutic X-rays hit the tumor from thousands of angles through the body, rather than just three angles like my conventional radiation treatment. That spreads the incoming X-rays more thinly across healthy tissue, causing less collateral damage.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd94jmeo8jxTmho6hAzkEB4CUVwRijVm5TiESFZkN1q5v3X72mmerHVevEsr_y1T_Aeb2hw4foOQFo8qdhZ2zBVYH7QZ7ncCRDXAb22iEhNhq-symEJ-Xh2iEtUsNfxpmc03A_LrFVSo4/s1600-h/cyberknife.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 398px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd94jmeo8jxTmho6hAzkEB4CUVwRijVm5TiESFZkN1q5v3X72mmerHVevEsr_y1T_Aeb2hw4foOQFo8qdhZ2zBVYH7QZ7ncCRDXAb22iEhNhq-symEJ-Xh2iEtUsNfxpmc03A_LrFVSo4/s400/cyberknife.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5381453452918979090" /></a><br />The CyberKnife machine is set up in an isolated room next to the control station. There's a table to lay on that can lift, slide, and tilt. Detectors near the ceiling look at imaging X-rays cast through the body. And the treatment beam comes from a big box mounted at the end of a massive robot arm – the same kind used in automotive manufacturing plants. <br /><br />Each day I laid down on the table, got positioned by the technician, and then kept still while the CyberKnife came to life. Despite its mass, the robot moved quickly and precisely. It looked like a giant bird, examining me from different angles to decide if I was edible. It almost tickled to see it moving over me, but it stayed at least several inches away and never actually touched me. If I moved more than a breath – to shift my weight or scratch an itch – the machine detected the movement and stopped. Then the technician checked on me, got me back in alignment, and resumed the treatment.<br /><br />The actual radiation didn't hurt at all. The only way I knew anything was happening was from the mechanical and electronic noises of the machine. Most of the time I just closed my eyes, listened to my iPod, and tried to nap without moving. That's actually harder than it sounds, since my body prefers to fidget rather than lie perfectly still for a whole hour. During the treatment of my tailbone, it actually got very painful to stay so still because of how that tumor was deforming my muscles and nerves. But by the time of this treatment those problems were gone and the greatest hardship was mere boredom.<br /><br />The whole course of treatment was five days of one-hour sessions. That's another advantage over conventional radiation which was a less convenient six weeks of ten-minute sessions. I haven't noticed any effects from the radiation yet, but I expect some fatigue, reddened skin, and local hair loss if it's anything like my previous doses.<br /><br />Hopefully my blood tests and next set of scans will show that this summer of radiation has finally finished the job of last December's surgery and five years of chemotherapy.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com2tag:blogger.com,1999:blog-886463268562762046.post-69819603797325104382009-08-12T13:29:00.003-04:002009-08-12T13:47:16.760-04:00Five Years<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcJ55PfQpMe5Pn0aKgx0IqlEY4gweOWN9CH-TF2TwE4aQYjDg8OJOWbN2ppnV3vKNWf0nxGZzhyDOlI4zVD-xkRJ-fADO0Cu8uIr3GyainuCmCFegoBxfG5L1zalbrqNAXFPrbEkY_zCQ/s1600-h/GetWell5Years.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcJ55PfQpMe5Pn0aKgx0IqlEY4gweOWN9CH-TF2TwE4aQYjDg8OJOWbN2ppnV3vKNWf0nxGZzhyDOlI4zVD-xkRJ-fADO0Cu8uIr3GyainuCmCFegoBxfG5L1zalbrqNAXFPrbEkY_zCQ/s400/GetWell5Years.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5369131056554743090" /></a><br />Today is exactly five years since my diagnosis with colon cancer. The statistics I faced then were a 50% chance of surviving two years and a 5% chance of surviving five.<br /><br />Some mechanical highlights: surgical tumor removal and colostomy, chemotherapy, exploratory surgery, peritonectomy and continuously heated intra-abdominal chemotherapy, colostomy reversal and temporary loop ileostomy, ileostomy reversal, chemotherapy, radiation, more chemotherapy, more different chemotherapy, tumor reduction and continuously heated intra-abdominal chemotherapy, colostomy, and radiation (ongoing).<br /><br />Some emotional highlights: time with friends and family, travel, productive work, creativity, games, movies, good food, live music, and new experiences.<br /><br />The amount of support it took to get me through these five years (and maintain most of my sanity) is illustrated by this collage of just some of the get well cards my girlfriend gave me for nearly every doctor's office visit and treatment session during these years.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com6tag:blogger.com,1999:blog-886463268562762046.post-52204794937910836462009-07-12T11:55:00.002-04:002009-07-12T12:02:11.718-04:00Ow, %&#@!Scientific American reports that <a href="http://www.scientificamerican.com/article.cfm?id=why-do-we-swear">swearing provides pain relief</a>. Now I don't feel so wimpy for moaning and cursing when I've had bad pain. Researchers theorize that swearing taps into ancient parts of the brain that respond to danger with angry vocalizations to intimidate attackers.<br /><br />I have also found that singing can help with pain endurance too. During my sessions of CyberKnife radiation, my muscles and bones hurt more and more during the hour kept still on the hard table. On the third session, I tried humming along to my iPod and got through the last thirty minutes much easier than with the other sessions.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com1tag:blogger.com,1999:blog-886463268562762046.post-11193637116347025262009-06-28T12:38:00.002-04:002009-06-28T12:41:46.459-04:00Oxycodone and OxyContinMy first experience with medication for cancer pain was around January 2007. A tumor in my pelvic bone made it very painful to walk or lay flat. Then when I went through radiation therapy I got radiation proctitis – burns to my rectum and anus that made bowel movements extremely painful.<br /><br />We treated those bouts of pain with oxycodone. A typical dose for me was one 5 mg tablet when the pain acted up, repeated every four to six hours if needed. More intense pain from the proctitis needed 10 mg at a time, but that tended to quiet down until the next bowel movement so it was not repeated as frequently. A really bad day might mean a total dosage of 30 mg of oxycodone. A moderate day would mean 5 to 10 mg, and good days none at all.<br /><br />Then last month we found a tumor growing into my tailbone. So I started back to taking 5 to 10 mg of oxycodone a day. A week later I was taking 20 mg a day and not getting relief. So my radiation oncologist started me on OxyContin, the controlled release formulation of oxycodone. He explained that keeping a constant concentration of oxycodone in my system would prevent the pain from breaking through, and an ounce of prevention is worth a pound of cure.<br /><br />I started on 10 mg OxyContin twice a day but found that I still needed the oxycodone to knock the pain down. Then we went to 20 mg OxyContin twice a day – still not enough. I tried taking it more often, three or four times a day plus oxycodone as needed, but I was still having debilitating pain. I started keeping notecards of my pill consumption and found I was getting around 120 mg a day of oxycodone in my system. A few hours a day a would feel okay, but at other times I would be moaning or pacing in pain.<br /><br />I decided I needed to get a handle on how much oxycodone I was getting between the controlled release and immediate release forms. So I started by finding the pharmacokinetic data on <a href="http://www.drugs.com/pro/oxycodone.html">oxycodone</a> and <a href="http://www.drugs.com/pro/oxycontin.html">OxyContin</a>:<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUIpsy6ORjqpnPLVbBtC6gPGYNeF_yU10ImXDFsQ3Rh0A9lAM_qVJQTTjxWdim_-iOOZ3SgX2lSZWsH9Q6MTbCceSQBuWpM0YJIhgT0BQrL3NDOioOMADcFDZsAVqDos-uqruU6nWQd3E/s1600-h/SingleDose.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUIpsy6ORjqpnPLVbBtC6gPGYNeF_yU10ImXDFsQ3Rh0A9lAM_qVJQTTjxWdim_-iOOZ3SgX2lSZWsH9Q6MTbCceSQBuWpM0YJIhgT0BQrL3NDOioOMADcFDZsAVqDos-uqruU6nWQd3E/s400/SingleDose.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5350054185075811026" /></a>Oxycodone gets into the bloodstream quickly – about one hour to reach peak concentration – and then decays away exponentially. OxyContin takes a couple hours to provide its maximum concentration of oxycodone and that level stays elevated longer as the pill keeps delivering medication while it travels through the intestines.<br /><br />It happens that 10 mg OxyContin gives about the same peak level as 5 mg oxycodone. Half of that peak is maintained up to six hours with oxycodone or twelve hours with OxyContin. Depending on what concentration your body needs to control the pain, that gives and idea of how long one dose will be effective.<br /><br />You'll notice that for neither formulation is the concentration stable for any period of time. This was a little surprising to me after reading how OxyContin is supposed to provide twelve hours of continuous relief. That's only true if the concentration out at twelve hours is enough to control your pain, and that means that for most of those hours the oxycodone concentration will be higher than you need. Just how drastically the concentration varies is somewhat masked by the use of a logarithmic scale in the drug literature rather than the linear scale in this reproduction.<div><br /></div><div>I wrote a computer program so that I could combine the effect from multiple doses of oxycodone and OxyContin, either on a regular daily cycle or from my own irregular dosage records. Comparing 5 mg oxycodone taken every six hours to 10 mg OxyContin taken every twelve hours illustrates the theory behind its standard dosage schedule.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDEA5P7tKYQYhl6Tn1y2GjJ3azQSFcgP-1dEdzfyBP0kGLzNVur3xxBXlxgMHQ5BSMUXPIOqFp3a1T4dctUSyGmsqgSy-7EMFMBg7ocgSvdq92M-Ra6IZvg6ljS97oe_lXnnK2UKlHMuQ/s1600-h/Oxycodone5q6h.png" style="text-decoration: none;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDEA5P7tKYQYhl6Tn1y2GjJ3azQSFcgP-1dEdzfyBP0kGLzNVur3xxBXlxgMHQ5BSMUXPIOqFp3a1T4dctUSyGmsqgSy-7EMFMBg7ocgSvdq92M-Ra6IZvg6ljS97oe_lXnnK2UKlHMuQ/s400/Oxycodone5q6h.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5350054176984609042" /></a>As with single doses, the two formulations reach the same peak concentration. With oxycodone it falls off quickly and a second dose is needed to get it back up. By coincidence or skillful formulation, the concentration from either dosage (5 mg oxycodone every six hours or 10 mg OxyContin every twelve hours) is nearly identical at the twelfth hour. Thus OxyContin provides the same peak, minimum, and duration as the equivalent dosage of oxycodone.<br /><br />When I tried taking OxyContin alone I noticed that, after waiting a couple hours for it to kick in, I would get about six hours of relief. But I was certainly not getting a full twelve hours. Since I had multiple prescription strengths on hand, I decided to compare taking a lower dose more frequently to a higher dose less often.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMu5aLAbc-vPoZuguet2d3EoeDqDNSdrTG7_bBkw3IkLmG_xhOmjTmOnAVGnmwwYuUcW38GYPyzji36e77A_MfmrZyBSvdzZyOjKh172u3Ychg_p24aWobtKJK3pdNpZAAEbBMNKaBAek/s1600-h/Oxycontin80d+4d.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMu5aLAbc-vPoZuguet2d3EoeDqDNSdrTG7_bBkw3IkLmG_xhOmjTmOnAVGnmwwYuUcW38GYPyzji36e77A_MfmrZyBSvdzZyOjKh172u3Ychg_p24aWobtKJK3pdNpZAAEbBMNKaBAek/s400/Oxycontin80d+4d.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5350054180626606338" /></a>I felt better with the high frequency dosing because it kept tighter control on the oxycodone concentration. If my threshold for pain were 30 ng/mL, then twelve-hour dosing would leave me below that level for a few hours each cycle whereas six-hour dosing kept me always above. Furthermore, the twelve-hour dosing would also make me higher than necessary for a few hours each dose. For any strength of OxyContin, twelve-hour dosing produces a variation in oxycodone concentration by about a factor of two.</div><div><br /></div><div>In retrospect it's not too surprising that I don't get get twelve hours of relief from a single dose of OxyContin. I don't get six hours of relief from oxycodone either; usually I feel it fading after four. So any formulation equivalent to six-hour dosing of oxycodone won't cut it. I could use a higher dose to keep the late hours covered, but I seem to be sensitive to the consequent overdose in the early hours.</div><div><br /></div><div>Finally, I compared my actual dosage records to the baseline OxyContin dosage I was using for a period of four days. I had recently increased to 20 mg OxyContin every six hours and took extra 10 mg OxyContins and 5 mg oxycodones as needed for pain.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyeEf3EymiBGizuYiMeRZXcAr0InqQDxrjbNMBLL9DHGLTaU8Jf031k6hz43QDenan95tk7WDrJuzvrNosyBo3c2ssOjGEd0vWeruqC4rWyVIH80lYhlsq06nUjF6U7KU_sePdH9Cb59k/s1600-h/HistoryJune15.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyeEf3EymiBGizuYiMeRZXcAr0InqQDxrjbNMBLL9DHGLTaU8Jf031k6hz43QDenan95tk7WDrJuzvrNosyBo3c2ssOjGEd0vWeruqC4rWyVIH80lYhlsq06nUjF6U7KU_sePdH9Cb59k/s400/HistoryJune15.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5350054175359660402" /></a>Sometimes during this period I felt okay but many times I was in moderate to severe pain. The erratic oxycodone concentration gives a clue why that was. My baseline dosage was not nearly high enough to control my pain. Relying on a lot of immediate release oxycodone produced big spikes and dips in the concentration. And adding irregular 10 mg OxyContin boosters generated delayed responses and lingering effects that were hard to track without a computer.<br /><br />After seeing this analysis I asked my radiation oncologist for 40 mg OxyContin every six hours. That seemed to be a good baseline that to keep me near the level of pain control and allow for smaller, more predictable doses to manage breakthrough pain.<br /><br />My pain management since that dosage adjustment has in fact been much better. Some of that relief may be from the radiation doing its job on the cancer, though it's still early in the therapy to expect that. In any case I think that analyzing my pain medication in this way helped to get it under control.<br /><br />For any computer nerds reading this, the program I wrote is in Python and appears below in microprint. You can copy it to a text editor to read, save, and run. There are two versions. One takes periodic doses on the command line to output twenty-four hours of concentration versus time. The other takes a file with space-delimited time-dose pairs listed one per line. It outputs the concentration from the time of the earliest dose until the last effects of the latest dose.<br /><br /><pre>Oxycontin.py:</pre><span class="Apple-style-span" style="font-size:15%; line-height: 1.0em;"><pre>#!/usr/bin/env python<br /><br /># Oxycontin.py 21 June 2009<br />#<br /># Python program to simulate plasma concentration of oxycodone from periodic<br /># doses of OxyContin and oxycodone<br />#<br /># Usage:<br /># chmod +x Oxycontin.py [run once to make file executable]<br /># ./Oxycontin.py time1 dose1 [time2 dose2] [...]<br /># time measured in hr<br /># dose measured in mg (5 for oxycodone, any other for OxyContin)<br /># outputs concentration (ng/mL) versus time<br />#<br /># Examples:<br /># ./Oxycontin.py 0 10 12 10 [10 mg of OxyContin every 12 hours]<br /># ./Oxycontin.py 0 5 6 5 12 5 18 5 [5 mg of oxycodone every 6 hours]<br /># ./Oxycontin.py 0 20 0 5 12 20 12 5 [20 mg OxyContins with 5 mg oxycodones]<br />#<br /># Richard J. Wagner, Ph.D. wagnerr@umich.edu http://soayacs.blogspot.com/<br /><br /># ---------------------------------------------------------------------------- #<br /><br />import sys<br /><br /># ---------------------------------------------------------------------------- #<br /><br /># Concentration profile for 20 mg of OxyContin at 30-minute intervals<br /># Source: Purdue Pharma L.P., Stamford CT (2007) with linear interpolation and<br /># exponential extrapolation (12.7 hr half-life during 36-hour transit and 3.7 hr<br /># half-life after excretion)<br />oxycontin = [ 0.00, 3.80, 12.00, 14.30, 15.00, 15.90, 15.90, 15.40, 14.80,<br />14.48,14.15, 13.83, 13.50, 12.80, 12.10, 11.40, 10.70, 10.33, 9.95, 9.58, 9.20,<br />8.85, 8.50, 8.15, 7.80, 7.51, 7.22, 6.94, 6.67, 6.42, 6.17, 5.93, 5.70, 5.48,<br />5.27, 5.06, 4.87, 4.68, 4.50, 4.32, 4.15, 3.99, 3.84, 3.69, 3.55, 3.41, 3.28,<br />3.15, 3.03, 2.91, 2.80, 2.69, 2.59, 2.49, 2.39, 2.30, 2.21, 2.12, 2.04, 1.96,<br />1.89, 1.81, 1.74, 1.68, 1.61, 1.55, 1.49, 1.43, 1.37, 1.32, 1.27, 1.22, 1.17,<br />0.99, 0.86, 0.75, 0.66, 0.57, 0.50, 0.44, 0.38, 0.33, 0.29, 0.26, 0.22, 0.20,<br />0.17, 0.15, 0.13, 0.11, 0.10, 0.09, 0.08, 0.07, 0.06, 0.05, 0.04 ]<br /><br /># Concentration profile for 5 mg of oxycodone at 30-minute intervals<br /># Source: Roxicodone (oxycodone hydrochloride), Xanodyne Pharmaceuticals, Inc.,<br /># Newport KY (2009) with linear interpolation<br />oxycodone = [ 0.00, 4.22, 7.73, 7.30, 6.43, 5.92, 5.40, 5.00, 4.60, 4.43, 4.27,<br />4.10, 3.93, 3.69, 3.45, 3.21, 2.97, 2.78, 2.59, 2.39, 2.20, 1.96, 1.72, 1.47,<br />1.23, 1.16, 1.10, 1.03, 0.97, 0.90, 0.83, 0.77, 0.70, 0.64, 0.58, 0.52, 0.47,<br />0.41, 0.35, 0.29, 0.23, 0.21, 0.18, 0.16, 0.13, 0.11, 0.08, 0.06, 0.03 ]<br /><br /># ---------------------------------------------------------------------------- #<br /><br />profile = [ 0.0 ] * 48 # a day of 30-minute intervals<br /><br />doses = sys.argv[1:]<br />doses.reverse()<br />while doses:<br /> time = int( 2.0 * float(doses.pop()) )<br /> dose = int(doses.pop())<br /> if dose == 5:<br /> for t in range( len(oxycodone) ):<br /> profile[ (time+t) % 48 ] += oxycodone[t]<br /> else:<br /> for t in range( len(oxycontin) ):<br /> profile[ (time+t) % 48 ] += ( dose / 20.0 ) * oxycontin[t]<br /><br />for t in range( len(profile) ):<br /> print t * 0.5, profile[t]<br />print len(profile) * 0.5, profile[0]<br /><br />sys.exit()<br /><br /># ---------------------------------------------------------------------------- #</pre></span><br /><br /><pre>OxycontinHistory.py:</pre><span class="Apple-style-span" style="font-size:15%;%; line-height: 1.0em;"><pre>#!/usr/bin/env python<br /><br /># OxycontinHistory.py 21 June 2009<br />#<br /># Python program to simulate plasma concentration of oxycodone from nonperiodic<br /># doses of OxyContin and oxycodone<br />#<br /># Usage:<br /># chmod +x OxycontinHistory.py [run once to make file executable]<br /># ./Oxycontin.py OxyDoses.inp<br /># takes input file of dose (mg) vs time (hr)<br /># outputs concentration (ng/mL) versus time<br />#<br /># Richard J. Wagner, Ph.D. wagnerr@umich.edu http://soayacs.blogspot.com/<br /><br /># ---------------------------------------------------------------------------- #<br /><br />import string<br />import sys<br /><br /># ---------------------------------------------------------------------------- #<br /><br /># Concentration profile for 20 mg of OxyContin at 30-minute intervals<br /># Source: Purdue Pharma L.P., Stamford CT (2007) with linear interpolation and<br /># exponential extrapolation (12.7 hr half-life during 36-hour transit and 3.7 hr<br /># half-life after excretion)<br />oxycontin = [ 0.00, 3.80, 12.00, 14.30, 15.00, 15.90, 15.90, 15.40, 14.80,<br />14.48,14.15, 13.83, 13.50, 12.80, 12.10, 11.40, 10.70, 10.33, 9.95, 9.58, 9.20,<br />8.85, 8.50, 8.15, 7.80, 7.51, 7.22, 6.94, 6.67, 6.42, 6.17, 5.93, 5.70, 5.48,<br />5.27, 5.06, 4.87, 4.68, 4.50, 4.32, 4.15, 3.99, 3.84, 3.69, 3.55, 3.41, 3.28,<br />3.15, 3.03, 2.91, 2.80, 2.69, 2.59, 2.49, 2.39, 2.30, 2.21, 2.12, 2.04, 1.96,<br />1.89, 1.81, 1.74, 1.68, 1.61, 1.55, 1.49, 1.43, 1.37, 1.32, 1.27, 1.22, 1.17,<br />0.99, 0.86, 0.75, 0.66, 0.57, 0.50, 0.44, 0.38, 0.33, 0.29, 0.26, 0.22, 0.20,<br />0.17, 0.15, 0.13, 0.11, 0.10, 0.09, 0.08, 0.07, 0.06, 0.05, 0.04 ]<br /><br /># Concentration profile for 5 mg of oxycodone at 30-minute intervals<br /># Source: Roxicodone (oxycodone hydrochloride), Xanodyne Pharmaceuticals, Inc.,<br /># Newport KY (2009) with linear interpolation<br />oxycodone = [ 0.00, 4.22, 7.73, 7.30, 6.43, 5.92, 5.40, 5.00, 4.60, 4.43, 4.27,<br />4.10, 3.93, 3.69, 3.45, 3.21, 2.97, 2.78, 2.59, 2.39, 2.20, 1.96, 1.72, 1.47,<br />1.23, 1.16, 1.10, 1.03, 0.97, 0.90, 0.83, 0.77, 0.70, 0.64, 0.58, 0.52, 0.47,<br />0.41, 0.35, 0.29, 0.23, 0.21, 0.18, 0.16, 0.13, 0.11, 0.08, 0.06, 0.03 ]<br /><br /># ---------------------------------------------------------------------------- #<br /><br /># Read tab-delimited time(hr)-dose(mg) pairs from the given data file name<br />doses = []<br />for line in open(sys.argv[1]).readlines():<br /> terms = string.split(line)<br /> doses.append( ( int( 2.0 * float(terms[0]) ), int(terms[1]) ) )<br />start = doses[0][0]<br />stop = doses[-1][0]<br />slack = max( len(oxycontin), len(oxycodone) )<br />duration = stop - start + slack<br /><br />profile = [ 0.0 ] * duration<br /><br />for dose in doses:<br /> if dose[1] == 5:<br /> for t in range( len(oxycodone) ):<br /> profile[ dose[0] - start + t ] += oxycodone[t]<br /> else:<br /> for t in range( len(oxycontin) ):<br /> profile[ dose[0] - start + t ] += ( dose[1] / 20.0 ) * oxycontin[t]<br /><br />for t in range( len(profile) ):<br /> print 0.5 * ( start + t ), profile[t]<br /><br />sys.exit()<br /><br /># ---------------------------------------------------------------------------- #</pre></span><br /><br /></div>Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com51tag:blogger.com,1999:blog-886463268562762046.post-11404822432132739882009-06-10T17:24:00.004-04:002009-06-10T18:04:44.699-04:00Those fiendish cellsThe protein called carcinoembryonic antigen (CEA) speaks volumes about my battles with cancer. I wrote about it twice before:<div><br /><a href="http://soayacs.blogspot.com/2007/10/cancer-quantified.html">Cancer quantified (2007)</a><br /><a href="http://soayacs.blogspot.com/2008/09/resurgence.html">Resurgence (2008)</a></div><div><br />Today I have an update tracking the concentration of that protein in my body over the past five years.</div><div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy-qz1cmoNzsdpwRVDKjDw7xtUjp-a0ERbOsUgsYgXrSzGRiWNBFSlwtxqNG2nHUSLUBpx2M84SnbzCGmJS2vYJ-JtzeGekplpWBZQY9DhC-8ulCHg7YWkXzI8VPSbZDehcuipwBarY_A/s1600-h/CEA2009.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy-qz1cmoNzsdpwRVDKjDw7xtUjp-a0ERbOsUgsYgXrSzGRiWNBFSlwtxqNG2nHUSLUBpx2M84SnbzCGmJS2vYJ-JtzeGekplpWBZQY9DhC-8ulCHg7YWkXzI8VPSbZDehcuipwBarY_A/s400/CEA2009.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5345813300975326514" /></a>When chemotherapy stopped holding down the cancer in late 2008, I traveled to Baltimore for a heroic surgery to remove the two big tumors and apply heated chemotherapy drugs to kill any stray cells. My surgeon was pleased that he was able to remove the tumors without too much destruction, but there was one area at the back of my pelvis where he worried that some cancer cells might still be hiding.</div><div><br /></div><div>So our plan was to let me recover from surgery and then follow up with chemotherapy or radiation to clear out that trouble area. The big drop in CEA in January 2009 shows that the surgery was effective in reducing the tumor load and a CT scan in February looked good (for a person who has been reassembled a couple times already).</div><div><br /></div><div>In the following months my CEA climbed back up to the limits of normal (5 nanograms per milliliter), solidly abnormal (over 10 ng/mL), and now stratospheric (633 ng/mL). Scans in May showed a tumor at the back of my pelvis eroding my tailbone and another sitting on the pubic bone in front of my bladder.</div><div><br /></div><div>I've spent the last few weeks scurrying to figure out the current situation and choose the best plan of attack. The leading contender right now is radiation, first to the tailbone and then to the pubic bone. I'm hoping that those areas are the only ones with cancer and that the radiation will be at least as effective as it was on my pelvic mass in 2007.</div><div><br /></div><div>There are other options to consider too: Taking the chemotherapy drug Xeloda during radiation to increase its effectiveness. Trying another chemotherapy drug like Vectibix (which is related to the drug Erbitux which brought me much suffering and little benefit). Or entering a clinical trial to try re-engineering my immune system to attack the CEA-laced cancer cells.</div><div><br /></div><div>The rapid rise in CEA and the sudden worsening of pain is spurring me to move quickly. I was looking forward to summer travel, more time with family, and gainful employment; but those plans are postponed now. The next stage of treatment – six weeks of radiation – is scheduled to start in five days.</div><div><br /></div>Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com3tag:blogger.com,1999:blog-886463268562762046.post-73552257782363842682009-05-07T08:51:00.003-04:002009-06-10T19:29:09.832-04:00Threads of reincarnation<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo0kGv7P_4gLBHjUe3y30-PSxOqHz65pHvFFmCYk_lDhdCCMUedFpKzzqEgvRYTXtuACSu4Mb5CFQ1L7ICBx8w6MnKR0NWfEvbz6rGJLhVrrH44cWAUUS9Mlwr9EhWNGzQsySXIVgIkIA/s1600-h/Jute+Background+by+Incurable+Hippie.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 268px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo0kGv7P_4gLBHjUe3y30-PSxOqHz65pHvFFmCYk_lDhdCCMUedFpKzzqEgvRYTXtuACSu4Mb5CFQ1L7ICBx8w6MnKR0NWfEvbz6rGJLhVrrH44cWAUUS9Mlwr9EhWNGzQsySXIVgIkIA/s400/Jute+Background+by+Incurable+Hippie.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5333063923733134258" /></a><br />I don't believe in an afterlife, but I'm not 100% sure that one does not exist. So sometimes I ponder how it might work. How is the soul tied to the body, and where does the soul go when the body can no longer carry it?<br /><br />One idea is that there is a whole other realm where souls go after leaving this world – heaven, hell, etc. But a simpler idea is that the souls return to our own world to continue their existence. They are reincarnated with a different body and maybe with different circumstances based upon what the soul did in previous incarnations.<br /><br />One argument against reincarnation is that there are not enough souls to go around. The population of the world is growing (generally exponentially), so there are many more bodies now than there were a thousand years ago. Where did we get all the souls to inhabit these bodies? Or what were today's billions of souls doing when there were not enough bodies for them to inhabit?<br /><br />I believe that time is an illusion, so I have an explanation based on the plasticity of time. Think of our world as a sheet of canvas and think of our souls as long threads. With time running from left to right across the front of the canvas, a soul comes into life by piercing the canvas from behind. It lives its life along the front of the canvas and leaves our world by piercing back behind at some point to the right.<br /><br />If time were immutable then any reincarnation must occur with a return to the front of the canvas somewhere still farther to the right. But if the netherworld is free from our constraints of time, then the thread could run in any direction behind the canvas. It might return to the left, and come back to the front at any point, even one corresponding to a time before its prior life.<br /><br />If the soul has little or no memory of its previous lives, then it could even make parallel runs across the front of the canvas without any paradoxes of coexistence. This flexibility means that all the living people you see today could be inhabited by any number of souls (up to as many as there are people today). And there could be any number of souls, weaving back and forth through time to inhabit all the bodies that ever have been or ever will be.<br /><br />So be nice to your neighbors. They might be the other lives woven from the same thread as you.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com1tag:blogger.com,1999:blog-886463268562762046.post-28687773298670197702009-04-07T21:19:00.002-04:002009-04-07T21:48:50.515-04:00Wii Fit<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFSrxe-YbWrQK0tlhBUdZGtj9w9VoltXzzguqTsWO_T4snKPludB9p_6rE0DgfucD1iWuIYmzMeScKpS4RuRnoDc5tCYWYr5v50qafTyIQjIowBs0ZLPJ8_risUnlw7rvvqFuIM7J1DH4/s1600-h/Wii+Fit.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFSrxe-YbWrQK0tlhBUdZGtj9w9VoltXzzguqTsWO_T4snKPludB9p_6rE0DgfucD1iWuIYmzMeScKpS4RuRnoDc5tCYWYr5v50qafTyIQjIowBs0ZLPJ8_risUnlw7rvvqFuIM7J1DH4/s400/Wii+Fit.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5322124203275389922" /></a><br />Having been through major surgery before, I knew how hard recovery would be after my big abdominal procedure in December. It's amazing how quickly the muscles atrophy during a week or two in a hospital bed. And the body turns to burning muscle when your digestive system is out of commission for a while.<br /><br />So I prepared this time by getting Wii Fit. It's a step board with sensors and a game disc that leads you on a variety of exercises. There's yoga, strength training, aerobics, and balance games. My favorites have been hula hoop, step dance aerobics, and ski slalom.<br /><br />I've never been a regular exerciser, partly because I get bored with the purposeless repetition. Wii Fit helped motivate me by teaching me new exercises, rewarding me with unlocked features, and letting me track my weight and fitness over time.<br /><br />There's also a social aspect. Before my surgery I tried out the games with my family. We each made our own avatar and competed at the games, setting records for time and quality. Then after surgery when I exercised alone the game put my family and friends in the scene to help motivate me. (That's a few of them with me in the picture above.)<br /><br />I do think the game helped me recover faster, especially since it was the middle of winter and hard to get outside for long walks. The exercise was plenty to raise my heart rate and strain my muscles. It might also be effective for weight loss, though that was the opposite of my goal post-surgery.<br /><br />Unfortunately I haven't stuck with Wii Fit like I probably should. Once I was well enough to get out of the house I preferred to go to work or do household chores rather than spend my limited energy on exercise. But now my energy has improved so that I'm trying to keep up with both regular activities and exercise.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com1tag:blogger.com,1999:blog-886463268562762046.post-48099357940687155962009-03-18T17:12:00.003-04:002009-03-18T17:59:46.386-04:00My ostomyMy big surgery in December was prompted by a tumor growing in my rectum and threatening to block the passage of stool. When the doctor removed the tumor he had to remove the rest of my rectum too. The rectum normally sits between the end of the colon and the anus, acting as a <a href="http://coloncancer.about.com/od/faqs/f/Rectum.htm">warehouse for poop</a>.<br /><br />With the rectum removed I was left with a short anal stump and the loose end of the colon was redirected to a hole in my abdominal wall (called a stoma). There the stool exits and is collected in a plastic bag taped to my belly. Without a rectum or anus to limit movement through the stoma, gas and stool exit whenever the colon becomes active. That can happen at any time of day or night but is most likely after starting to eat.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf_FhnAfFW9XBc40P7WPbmhcYLIPKMjphTStfSkuc9mQA8o-9kULvuK-nQBVNUWKPp5vYNsm6vGqB-d73exuIFH1czF7EoF_xZXpNQjlK9pw8KXozBognFU2ghFHq5eixDY2vDi-63E60/s1600-h/Front+of+Ostomy.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf_FhnAfFW9XBc40P7WPbmhcYLIPKMjphTStfSkuc9mQA8o-9kULvuK-nQBVNUWKPp5vYNsm6vGqB-d73exuIFH1czF7EoF_xZXpNQjlK9pw8KXozBognFU2ghFHq5eixDY2vDi-63E60/s400/Front+of+Ostomy.jpg" alt="" id="BLOGGER_PHOTO_ID_5314639105984079554" border="0" /></a><br />My ostomy bag is a two-piece Hollister New Image system. It has an adhesive flange which I tape to my belly and a hole in the center for the stoma to protrude through. On top of that flange I place a special opaque plastic bag to collect stool. It has a charcoal filter to let gasses vent without odor and a clipped opening to allow collected stool to be emptied into a toilet. I replace the bag every two days for freshness and change the flange about once a week to clean the skin underneath and restore adhesion.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieT0fWSl8bIg4Ia67Gx8J6ByQ0ABE15JE2lXTIgqywvRZqIRBpEc71H0axTDn99vGu2pzb1fdX2BROKDgkKYQrrKYluVVq5lPA-OYa6FOX28oL-fCboIiZ9b27sruEchsi7Tjt8swGxpA/s1600-h/Top+of+Ostomy.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieT0fWSl8bIg4Ia67Gx8J6ByQ0ABE15JE2lXTIgqywvRZqIRBpEc71H0axTDn99vGu2pzb1fdX2BROKDgkKYQrrKYluVVq5lPA-OYa6FOX28oL-fCboIiZ9b27sruEchsi7Tjt8swGxpA/s400/Top+of+Ostomy.jpg" alt="" id="BLOGGER_PHOTO_ID_5314639112869676210" border="0" /></a><br />My stoma is up to two inches long, depending on whether my colon is in a relaxed or contracted state. It sits upon a crowned region of my belly due to the rearrangement of intestines beneath. So the whole appliance, with the crown, stoma, bag, and contents included protrudes two or three inches compared to the other side of my belly.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRaRuab2rVWxuDi_2XMdPB5pbZal-J5K8oxcRWKRxrCSEE968YsYDvtX8WnfR2ilW9lddgEFyo9yaAOx0xmLu-0cLLA2P0gka3j5sMwdyZPFwvT4PpCvCAJj669Qzq56DXM3PJDCbSXIg/s1600-h/Stoma.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRaRuab2rVWxuDi_2XMdPB5pbZal-J5K8oxcRWKRxrCSEE968YsYDvtX8WnfR2ilW9lddgEFyo9yaAOx0xmLu-0cLLA2P0gka3j5sMwdyZPFwvT4PpCvCAJj669Qzq56DXM3PJDCbSXIg/s400/Stoma.jpg" alt="" id="BLOGGER_PHOTO_ID_5314639119188843730" border="0" /></a><br />I check on the bare stoma when I change a bag or remove the flange and clean the whole area. It's a soft, pink tube that weeps moisture and bleeds easily if touched. It does not have nerves to feel touch but does give a sensation of pressure as stool passes.<br /><br />It's hard for me to accept having this new body part and associated medical appliance constantly on my body. I'm not eager to go shirtless in front of anybody – no more beaches, pools, or bare backed work in the sun. The lack of control, feeling, and muffling means that I can let out a big fart sound at any time without warning – quiet meeting rooms make me anxious. The appliance takes more time to dry or change after a shower, so it's impossible to jump in for a quick shower.<br /><br />The protrusion of the stoma makes me uncomfortable trying to lay on my belly in bed. It's not that the stoma hurts from the weight, but I worry that it will be harmed or get stuck trying to pass something out. Likewise, sexual relations are more inhibited. First, I don't feel very sexy with this big bandage-looking thing on my belly. Second, the flap of the bag hangs down right into the area where business gets done. I haven't found a comfortable way to fasten it out of the way. And third, the stoma and any contents of the bag make it uncomfortable to lie belly to belly with another person.<br /><br />The biggest discouragement to me now is that: the ostomy interferes with intimacy and affection. The second biggest annoyance is with clothing. Now, in the winter, I can cover up the appearance of the appliance with layers of heavy clothes. But still it sometimes looks like I have something hidden under my shirt or that I have a strikingly large beer belly in comparison to my otherwise thin frame. This problem is likely to get worse as the weather warms.<br /><br />My strategy for now is to get more comfortable with my own body and worry less about how it appears. But I am a person who likes to dress sharp in public, so having half my wardrobe not function and appearing less fit than I am is embarrassing.<br /><br />I don't want to complain too much. Having the ostomy saves me from the poor function I had before the surgery: unpredictable bowel movements up to twenty times a day, pain, and an impending blockage. I feel lucky that I haven't had to endure worse medical augmentation. And I look forward to taking advantage of the greater freedom for travel and activities.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com53tag:blogger.com,1999:blog-886463268562762046.post-42931694184510043322009-02-27T21:44:00.003-05:002009-02-27T22:15:46.962-05:00Pain scaleWhenever I'm at a doctor's office or hospital, the nurses and doctors ask me to rate my pain on a scale of 0 to 10. Apparently pain is a common symptom among cancer patients. Over the years I have experienced different kinds and degrees of pain across the spectrum. And with that experience I have developed a guide to keep my assessment consistent from week to week.<br /><br /><div style="text-align: center;"><span style="font-style: italic; font-weight: bold;">Pain scale</span><br /></div><span style="font-weight: bold;">0: No pain.</span><br /><br /><span style="font-weight: bold;">1 or 2: Noticeable pain.</span> Not enough to be bothersome, but enough to be aware that some part of my body is unhappy.<br /><br /><span style="font-weight: bold;">3 or 4: Distracting pain.</span> It draws attention away from normal tasks and causes discomfort. It is not unbearable, but I would prefer to treat it if possible.<br /><br /><span style="font-weight: bold;">5 or 6: Constant pain.</span> I am continually aware of the pain and unable to concentrate on anything else without great effort.<br /><br /><span style="font-weight: bold;">7 or 8: Writhing pain.</span> Pain that makes me moan, yelp, grimace, and contort.<br /><br /><span style="font-weight: bold;">9 or 10: Blinding pain.</span> Unendurable pain, greater than what I could imagine under normal circumstances.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTpq1WNU_GUhlQsSmpP_uufAQpUgFjd72Pr9NunxPgvyXC0KTu8_MFg-C2TQ3ThyphenhyphenvNoFDjA643aEeaT0e-h5NzcoOea0qbOv1QYYCHKga-xObpfYZ0IMweA7m9b1RYVWGCJ0q4ZvGQpRk/s1600-h/Pain.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTpq1WNU_GUhlQsSmpP_uufAQpUgFjd72Pr9NunxPgvyXC0KTu8_MFg-C2TQ3ThyphenhyphenvNoFDjA643aEeaT0e-h5NzcoOea0qbOv1QYYCHKga-xObpfYZ0IMweA7m9b1RYVWGCJ0q4ZvGQpRk/s400/Pain.jpg" alt="" id="BLOGGER_PHOTO_ID_5307673741848996082" border="0" /></a><br />During most of my treatment the pain has fortunately been in the 0 to 2 range. I have had frequent excursions into the 3 or 4 range with problems such as proctitis or healing after surgeries. When the source of that pain is unknown it can be useful for finding a new problem, but if the source <span style="font-style: italic;">is</span> known then I prefer to medicate to a level where I can function normally.<br /><br />The tumor that broke my pelvis caused pain in the 5 to 6 range. The radiation to treat it caused rectal pain shooting as high as 8, which made me wonder whether the cure was worse than the disease. After a few months it improved into the range of 1 to 4 which I medicated when necessary.<br /><br />I am not conscious of experiencing a 9 or 10, but I think I did in the hours and days following major surgeries. Strong drugs or trauma have erased those memories.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com2tag:blogger.com,1999:blog-886463268562762046.post-67338944064231772542009-02-06T14:28:00.002-05:002009-02-06T14:52:13.596-05:00Sense of touchI lost some feeling in my hands and feet due to the various chemotherapy drugs I've taken over the past five years. I also lost my fingerprints thanks to Xeloda, which irritates the palms and soles in a reaction called <a href="http://www.chemocare.com/managing/handfoot_syndrome.asp">hand-foot syndrome</a>.<br /><br />When I went to Disney World in 2007 I found that the entry gates use fingerprint scanners to ensure that the person using an electronic ticket is the same one who registered it. The scanner choked when I tried to register and an attendant had to override it. I bet that enough of the population has similar issues that it's in their training manual. I suppose it also means that people like me are a headache for anyone else trying to use fingerprints for identification.<br /><br />Some of the numbness is nerve damage, particularly from the platinum-based drugs. The nerves do slowly heal, so I am getting some feeling back. In fact, now that I've been off of systemic chemo for four months I have enough feeling to realize that I lost more than I appreciated. Except for a period after a massive dose in 2005, the numbness hasn't been enough to interfere with tasks like holding a pen or buttoning a shirt. It's just been a dullness of sensation.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://www.sciencemag.org/content/vol323/issue5914/images/medium/572b-1-med.gif"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 267px; height: 230px;" src="http://www.sciencemag.org/content/vol323/issue5914/images/medium/572b-1-med.gif" border="0" alt="" /></a><br />Today I learned that there's another explanation. According to <a href="http://www.sciencemag.org/cgi/content/full/323/5914/572b">research published in Science</a>, fingerprints enhance the sense of touch. The ridges vibrate as they encounter bumps on a surface and transmit stronger signals to the nerve endings. So part of my numbness to texture is not just the nerve damage but the lack of fingerprints. I wonder if they, too, will regrow over time.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com2tag:blogger.com,1999:blog-886463268562762046.post-66392194999117540212009-01-05T11:21:00.003-05:002009-01-05T11:38:12.444-05:00Holiday missedOne of the downsides of my big surgery is that it had to be done in December. I delayed it a week or two so that I could enjoy Thanksgiving with my family and some early Christmas activities. For the past few years of cancer treatment I have tried to schedule a break for Christmas so that I could enjoy the festivities and time with family.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVztvri5sz_wxVE0yJtO5Zcvfg0x2uhLJvq4rL2uio4FxpRkyr4CQ1-8q_aNRFHsyHhSa_RTDW_zJ53Gca98YiSd1pD4dpH86I8VGs3W0vzXsMFtlCmaxa6V6kescyLv4nWtBxZZjpIGI/s1600-h/Tree+Lights.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 250px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVztvri5sz_wxVE0yJtO5Zcvfg0x2uhLJvq4rL2uio4FxpRkyr4CQ1-8q_aNRFHsyHhSa_RTDW_zJ53Gca98YiSd1pD4dpH86I8VGs3W0vzXsMFtlCmaxa6V6kescyLv4nWtBxZZjpIGI/s400/Tree+Lights.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5287845898090369890" /></a><br />But I didn't think it would be wise to delay this surgery any longer. And from my surgeon's description the tumor in my rectum was on the verge of becoming life-threatening any day. So I sucked it up and focused on surviving the surgery, sacrificing what is regularly the happiest time of the year for family, friends, and me.<br /><br />Now that my body is finding it's new normal, the holidays are over and the first full week of January marks a return to sober routines of work and non-festive cold weather. It's all a little more depressing without fresh memories of a fun Christmas break.<br /><br />At least there is one more holiday to celebrate. Since I was little my family celebrated Epiphany, or Little Christmas, on January 6th with a nice meal and a small gift exchange. I will try to enjoy that again this year in the company of my girlfriend and companions.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com2tag:blogger.com,1999:blog-886463268562762046.post-81241367511346961082008-12-31T17:31:00.002-05:002008-12-31T17:45:24.770-05:00Bearded man<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOm49hlcjLNnFR03FkswkmTmhBhGerF2n8kEo27TYFZaK6t-XvRQnwSklrw555bt2IYLGdl21q50D7FZgHKwY0ihVVAssYm5KPq9lqcT57nSWEL2-WMUF0SLZ8Erwe16uYSYfkCreoVdY/s1600-h/Bearded+Rick.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOm49hlcjLNnFR03FkswkmTmhBhGerF2n8kEo27TYFZaK6t-XvRQnwSklrw555bt2IYLGdl21q50D7FZgHKwY0ihVVAssYm5KPq9lqcT57nSWEL2-WMUF0SLZ8Erwe16uYSYfkCreoVdY/s400/Bearded+Rick.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5286085811838060770" /></a><br />I'm out of the hospital after my big surgery. It went well – the surgeon found only the two known tumors to be removed. The one in my rectum had grown to the size of a lemon and was very near complete obstruction, so I'm lucky that I didn't need a half-assed emergency surgery in the weeks leading up to the one we planned.<br /><br />The rest of my abdomen looked clean, so they took out the tumors, applied heated chemotherapy, and sewed me back together. My rectum was lost to the tumor, so now I have a permanent colostomy. The tumor was also attached to my bladder but fortunately the surgeon was able to separate them and save my urinary tract.<br /><br />I've been back home for a week, enjoying the peace and privacy that lack during any hospitalization. I skipped shaving in protest, as an energy-saving measure, and out of curiosity for how I'd look with two weeks' growth. My energy and appetite are slowly improving; my brain is still a bowl of mush.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com2tag:blogger.com,1999:blog-886463268562762046.post-68453970055071683132008-12-04T17:34:00.007-05:002008-12-04T18:01:33.043-05:00A big dayI'm coming up on one of those days that's common in the life of a cancer patient: a Big Day. On Monday I'll check into Mercy Hospital in Baltimore and on Tuesday Dr. Armando Sardi will attempt to remove my chemotherapy-resistant tumors and fry any stray cancer cells with a heated chemotherapy flush.<br /><br />He told me to expect an average hospital stay of two weeks for this procedure and three months for full recovery. But I know from my big surgery in 2005 that complications could prolong that by at least a factor of three.<br /><br />I don't know exactly what shape my body will be in after the surgery. I'll probably have a new colostomy. I might have a urinary ostomy. The previously irradiated section of pelvic bone will be removed if it's still harboring malignancy. The doctor might find that there's too much disease to treat when he opens me up and just leave it be. Or all could go wonderfully well and this could finally clear me of the cancer I've been wrestling with for more than four years.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbbOykn_ZLdStHfYBHJoMM5prsNRqTUko6dtOsTI8V639g0W3liKogJ5HsTCf9C8FrW9MzmPr0v2tPjHbZFKBuEq_VN4PCkIJ5ABVJVt0SnhWWNpc6jXITI3dwo2k4IGtVkIGVuYh0ycw/s1600-h/CraggyGardensVista.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbbOykn_ZLdStHfYBHJoMM5prsNRqTUko6dtOsTI8V639g0W3liKogJ5HsTCf9C8FrW9MzmPr0v2tPjHbZFKBuEq_VN4PCkIJ5ABVJVt0SnhWWNpc6jXITI3dwo2k4IGtVkIGVuYh0ycw/s400/CraggyGardensVista.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5276071613178783298" /></a><br />How do you prepare for a day of such uncertainty? I spent extra time with family at Thanksgiving and celebrated some parts of Christmas early since I won't be able to travel to be with them. I have already finished wrapping presents for my girlfriend and my mother who will be in town with me. For my scientific consulting business I have made arrangements to work from home during recovery and put projects in motion to continue in my absence.<br /><br />But it's hard to predict just what will happen beyond Monday. It's like driving on a strange road in thick fog. There are other times in life when we all experience such uncertainty: the first day of school, the first day of college, the first day at a new job or the first day in the military. Those are days like this where there's a known unknown, an experience which we'll look back at someday and appreciate what changed at that moment. Another big day.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com2tag:blogger.com,1999:blog-886463268562762046.post-83870392773424388882008-12-01T20:26:00.007-05:002008-12-01T21:02:51.195-05:00The face of cancer – 2 years<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh98LHHCHgo_1lHufszgUQjjhPiEG7lhMQa5b67S2vno6US4HZOswNS8Kje74wXVAadF3nC2IEkwUaXrQr8lKP2q3ZtH5QLtGOfFXCaVLyTlCTihtMrhtt8-_LiIByEoQNp8CVnZxCQEMo/s1600-h/FaceOfCancer24.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 125px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh98LHHCHgo_1lHufszgUQjjhPiEG7lhMQa5b67S2vno6US4HZOswNS8Kje74wXVAadF3nC2IEkwUaXrQr8lKP2q3ZtH5QLtGOfFXCaVLyTlCTihtMrhtt8-_LiIByEoQNp8CVnZxCQEMo/s400/FaceOfCancer24.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5275006928371677762" /></a><br />Two years ago I began taking daily photographs of myself to track how my appearance changes as I battle with cancer. During that time I started a different chemotherapy, treated a bone tumor with radiation, knocked the cancer back into remission, finished chemotherapy, diagnosed a recurrence, started another chemotherapy, and found that these drugs that helped before are no longer stopping the cancer's growth.<br /><br />I previously posted time-lapse movies of these self portraits at the <a href="http://soayacs.blogspot.com/2007/06/face-of-cancer.html">6 month</a> and <a href="http://soayacs.blogspot.com/2007/09/face-of-cancer-9-months.html">9 month</a> marks. Now I present two years of self portraits as a <a href="http://www-personal.umich.edu/~wagnerr/FaceOfCancer24.mov">high resolution download</a> or as a <a href="http://www.youtube.com/watch?v=pRlYgHTycY8">streaming video</a>.<br /><br /><object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/pRlYgHTycY8&hl=en&fs=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/pRlYgHTycY8&hl=en&fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object><br /><br />The early months were marred by the severe acne and hair loss from the previous ineffective chemotherapy. Since then I think my appearance has continued to improve even through the latest months of recurrence and unsuccessful return to other drugs.<br /><br />The best plan of attack now is a big surgery to go after the tumors directly. So I am preparing myself through eating, exercise, relaxation, and planning for months of recovery. The break from chemotherapy at this time might show in the extra twinkle of energy and clarity I feel.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com3tag:blogger.com,1999:blog-886463268562762046.post-57937300594051412352008-10-23T10:40:00.003-04:002008-10-23T10:58:40.686-04:00Avastin hypertensionI am now off of Avastin in preparation for surgery in December. Since Avastin prevents blood vessel growth, it needs to be removed so that the surgical wounds can heal properly.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3EdLm3xf_bZ53-lQczjTBHmak6WszuIogjA3I1xhf2ofbGDOFJXsPtUFm6K_rnENuqY1KgYrdh61XvpHebriGsD3BMTuQwOFvn5ybbr93-TJ2ChDZn-kz6g92_MUKHPajVHqj58EukB8/s1600-h/Avastin.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 204px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3EdLm3xf_bZ53-lQczjTBHmak6WszuIogjA3I1xhf2ofbGDOFJXsPtUFm6K_rnENuqY1KgYrdh61XvpHebriGsD3BMTuQwOFvn5ybbr93-TJ2ChDZn-kz6g92_MUKHPajVHqj58EukB8/s400/Avastin.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5260363754477994050" /></a><br />Another side effect is hypertension. My blood pressure lately is around 155/90 and that's even with 10 mg per day of Norvasc. I haven't noticed any problems with the high blood pressure, but I know that long term it should be lower. I was curious how long it takes to return to normal after stopping Avastin, so I did a little Googling.<br /><br />There's a good amount of information now about how to identify and manage Avastin-induced hypertension, but I haven't yet found any data about how patients respond after stopping it. Then it occurred to me – Avastin is usually given to patients with late stage cancer, so there's probably not much chance to track patients for years after stopping therapy.<br /><br />It's just another little reminder that I'm sailing in uncharted waters and heading further from shore every year. Fortunately I deal well with uncertainty so it doesn't bother me emotionally, but as a scientist it's striking to me how difficult it is in medicine to get enough data to make informed decisions.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com11tag:blogger.com,1999:blog-886463268562762046.post-640532335454484322008-09-29T13:50:00.005-04:002008-09-29T14:11:24.164-04:00ResurgenceA year ago I <a href="http://soayacs.blogspot.com/2007/10/cancer-quantified.html">graphed my CEA</a> to show how that tumor marker tracked the growth and remission of my cancer. Now it's time for an update:<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpiVd88UjIQQuvl6mZz668j9SVcOSvnt0Ospf01Pn_o0NJ3BDQsH5mf2h6p5Du6XB2i745UTYxMyMuXDuVPNzVINhpSVPyKTved5YAYuNTL-oJFpEhp99gyXavp-RBVMBXTZO_wU6d-eA/s1600-h/CEA2008.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpiVd88UjIQQuvl6mZz668j9SVcOSvnt0Ospf01Pn_o0NJ3BDQsH5mf2h6p5Du6XB2i745UTYxMyMuXDuVPNzVINhpSVPyKTved5YAYuNTL-oJFpEhp99gyXavp-RBVMBXTZO_wU6d-eA/s400/CEA2008.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5251502459272558962" /></a><br />At the end of 2008 it looked like my cancer was headed toward oblivion as all of my tests were clear and I was feeling good (aside from the chemotherapy side effects). We continued Xeloda and Avastin for a few more months to be safe. My CEA came back up a bit but held steady within the normal range (below 5.0 ng/mL for a cancer survivor). As the cumulative side effects of Xeloda mounted we stopped that drug and planned to continue with just Avastin to keep any tumor growth in check.<br /><br />A couple months later I had some pain and fevers that led to scans and a sigmoidoscopy which revealed a new tumor in my rectum and another nearby. So I went back on Xeloda, continued Avastin, and added oxaliplatin, an ingredient in the FOLFOX regimen which was my first round of chemotherapy in 2004-2005. The oxaliplatin made me feel awful, but for three months now my CEA has been rising.<br /><br />So it appears that Xeloda, Avastin, and oxaliplatin have lost their effectiveness. Later this week I will get new PET/CT scan results and discuss plans with my doctor. The leading candidates to try next are mitomycin C (an older chemotherapy drug) and panitumumab (a newer relative of Erbitux, the drug that made me sick and ugly in 2006 but failed to stop my rising CEA at that time).Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com14tag:blogger.com,1999:blog-886463268562762046.post-5316221054709649342008-09-25T10:42:00.004-04:002008-09-25T10:57:52.743-04:00Died youngIn the past day I learned that two of my friends with cancer died this week. Both were a little younger than me and struck with the disease while still in school.<br /><br />One of them I met while I was getting treatment for my first recurrence, two years after my own initial diagnosis. She had a very similar medical history and even shared the same surgeon and oncologist. I tried to offer some encouragement and advice as she began her own battle. Unfortunately she had more trouble with the treatment and her cancer was more aggressive.<br /><br />The other I met earlier this year through a support group for young adults with cancer. He had a rough time with repeated and painful metastases, but kept fighting, organized the support group, and enrolled in graduate school.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjggQkeocnwVLt2D34CkGz7ttP0ES2e4iHVET1mGd1San9PwQeJkA_jd7M9nuEHqmdsd3lPWI19MattZq-9FxUjXlAGtzuqphBYJMxRX8vUvS1vMc-BOcPw1-vXMIF8anXDRlJ9JewbPdM/s1600-h/Vultures.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjggQkeocnwVLt2D34CkGz7ttP0ES2e4iHVET1mGd1San9PwQeJkA_jd7M9nuEHqmdsd3lPWI19MattZq-9FxUjXlAGtzuqphBYJMxRX8vUvS1vMc-BOcPw1-vXMIF8anXDRlJ9JewbPdM/s400/Vultures.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5249972335835906914" /></a><br />They say that people with cancer are living longer and that cancer is becoming a manageable long-term disease like diabetes. But with the recent loss of these two friends and the high profile loss of Tony Snow and Randy Pausch, it's apparent that cancer is still efficient at dishing out tragedy.Rick Wagnerhttp://www.blogger.com/profile/03004674748109287433noreply@blogger.com2