Only Four More Chemo Treatments To Go

I was planning to convert my diary to blog and work up to real time back dating the entry's, For now I'm going to abandon that idea and jump to real time. I will try to fill in when I can.
I've been trying hard to make cancer treatment look easy and I've been impressive with my success. Tuesday I started my fourth Infusion of Fluorouracil and Oxaliplatin two potent Chemotherapy drugs well known for kicking ass. The side effects of many chemo drugs and particularly Oxaliplatin are cumulative, that is they start from how bad they got the last cycle and get worse from there. Tuesday I left the hospital with a Chemo pump and the home infusion nurse was scheduled to come to my house to do my "take down" Thursday at 5:15pm. That means shutting off the chemo and placing everything in the hazmat container, flushing the chemo port with saline, injecting Heparin into the port to prevent clots and then removing the needle. when I called to verify the schedule they said they thought I was going to do it myself this time. I've been training but they have resisted to this point so I was a little surprised. I managed it with no problem. It does take a while to get the needle stick to stop bleeding since it was just filled with stuff to prevent clotting, it took about 10 Min's to quit.
Chemo fatigue is starting to take its toll on me, this week I had a client tell me to go home and go to bed. I must have looked bad. Fatigue is doing a number on me. I have noticed problems with fine motor skills too, I have the shakes. Saturday I was tired and laid down around 5pm, when I woke up it was after 10am Sunday. I didn't feel exactly rested but I did feel better. I tried to do some work today but my energy drains fast. The good news is I'm not spending all my time in the bathroom and bouts of nausea are weak and rarely stay long. I haven't mentioned that I spent Thursday night sleeping on the bathroom floor hoping I could make it 2 feet in time, It almost worked, by morning I had taken 5 doses of anti-Diarrhea medicine and was well on the way toward normal. Good thing too, cause the maximum is 6 doses in 24 hours. I was up to over an hour between sit downs by the morning and was able to go get some work done.

5.) Rehab isn't always a bad thing

The Radiation techs have figured out how to drive me to distraction. I can see them saying to themselves "I bet this guy is really ticklish, lets draw all over his butt while telling him to hold still." I was flipping around like a fish out of water and thinking I'll probably start getting radiation to my knees since I just about flipped off the table as they were drawing the aiming marks. I would not give them better then a C- for the art work. The photo I had of the "art work" was deamed a bit to much by Blogger so I gracefully removed it. I'll look for something better to add later.

Maybe some day I'll change the subject but I'm not ready to give in yet. I found an interesting NIH study being done for prostate cancer that could help me. In any event it will be a fun distraction from the other indignities medicine has put me through. The basic concept is penile rehabilitation through inhanced nocternal erections prior to and after surgery. The only obsticle is cost since it involves taking tier 3 drugs which are not covered by insurance. The actual study can be found seen at http://clinicaltrials.gov/ct2/show/NCT00544076 Naturally I picked the Arm III: Patients receive oral sildenafil citrate once daily for up to 9 months in the absence of unacceptable toxicity. Patients also receive a set of 3 doses of oral sildenafil citrate at least 48 hours apart monthly for up to 18 months.

After reading: http://www.webmd.com/erectile-dysfunction/cialis-viagra-levitra-treat-ed particulaly the part where is says “What Are the Differences Between Cialis, Levitra, and Viagra? Cialis, Levitra, and Viagra work by a similar mechanism to cause erections. There are subtle differences in how long the drug works and how quickly it works. Levitra works a little longer than Viagra. They both take effect in about 30 minutes. With Levitra, the effects last for about 5 hours. With Viagra, the effects last approximately 4 hours. Cialis works a bit faster (within about 15 minutes), and the effects last much longer -- up to 36 hours in some cases.” Naturally I chose Cialis since it works longer then the other two.
Part of what peaked my interest was reading “Unfortunately, radiation tends to disrupt the blood flow and hence the outcomes for sexual function decrease over time. Almost half of men treated
will have problems. Sadly, treatment options are not that many as this is an area wanting of adequate research . Since it is a problem with blood flow, most patients improve with Viagra. There is some evidence that intra-urethral (it is suppository for the penis, the drug is inserted inside the hole where urine and ejaculate passes) alprostadil also helps, however this may be too invasive to be acceptable to you.”
My plan is to take between 5 and 10 Mg of Cialis daily for a month prior to surgery. I have the perscription and am ready to start. The only issue is that my blood pressure has been elevated from the treatment giving me a reason delay a few days before starting.

5.) What the Radiation Department dosn't want to hear from you

OK, I confess, I'm beginning to panic about the family jewels. I do think there are some things worse then death and this is getting way to close to one of them. I asked Dr. C. about some kind of shield for my genitals during the radiation treatments. I got more puzzled looks then answers. One response I got that I'm getting tired of is being told I can stop treatment at any time. That's not what I'm about, I'm not chicken or stupid, just the opposite, I want reassurance everything is being done to minimise side effects while effectively treating my cancer. I don't have testicular cancer so why can't we put a lead apron over them like they do at the dentist office. Boy did that question turn out to be a can of worms. One response Dr. C had was that lead can actually cause back scatter increasing the dose by reflecting it back off the lead. Then the worse news, at the dose level of 1.8 gray it would take 7 inches of lead to cut the exposure in half. So the bulb of the penis and somewhat the base has no option and adding lead could slightly increase the absorbed dose. The particle accelerator has the ability to taper off the dose very quickly. I still think lead would be a better idea I sent Dr.C. a note saying if they couldn't come up with something I would get some lead and make it myself. I actually went to a roofing supply house and got some lead flashing. Dr. C doesn't think we could use lead and keep me in the designed position. I don't agree but for now we settled on a compromise. If you can't reduce the dose and you can't shield it, the only option left is distance. So from now on we are going to tie gauze around the base of my testicles and penis to pull them out of the way as much as we can without harm. Dr. C. also said he would set it up for me to speak with The Physics Department so I could ask questions and find out if there were any other options. I'm probably the first patient to actually talk to someone in the Physics Department during treatment. They generally work in the background without talking to patients. I get the impression I'm the only one to have these concerns and side effects but logic tells me that can't be true. I probably am the first to push the issue this far. I only get to do this once and the effects can be irreversible, I sure don't want to find out later there was something that could have helped we didn't do. On the positive side I am getting the feeling they are listening to me now.

4.) What you don't want to find out about Radiation

After my second radiation treatment it hurt to pee and after the third treatment I started seeing blood in my urine. It's difficult to imagine finishing all 28 planned treatments with it going like this so quickly. That's not even the worst of it, I unfortunately came up with a new condition. Sexual anhedonia or 'ejaculatory anhedonia'. This means that one will ejaculate with NO accompanying sense of pleasure. This rare condition means one can suffer from lack of pleasure when the body goes through the orgasm process. Mine has been painful for several minuets like a bee sting and strong pressure like you have to pee but cant start at the same time, some fluid does come out but with no pleasurable feeling at all like an orgasm normally has.
Now after the eighth Radiation with Chemotherapy treatment I still have blood in my pee, a little more then yesterday and very red for the last few drops. So much for my worrying about erectile dysfunction. Getting and keeping erect is no problem, but my orgasm really sucked. When it happened I didn't feel any spasm at all. A fair amount came out but I would not have known if I didn't see it. Rather then the uncomfortable stinging painful feeling I've felt for the last week now I can't feel anything. No muscle spasm or hormone rush. No afterglow, happy sleepy feeling that I always felt before. A sad thought comes over me but this may be what many unsatisfied women feel. No wonder they want to talk during and after sex. I get it now. It Sucks. Now I wonder why I was so focused on possible erectile dysfunction. It never occurred to me there could be something worse. I never considered it might not feel good anymore. I need to put new thoughts into when hopeless is really hopeless and how it fits in my exit strategy, I may already be a lot closer then I thought. I had assumed my problems wouldn't really start to kick in until after the surgery. I don't know how many cancer patients plan an exit strategy for when things become unbearable, I have a definite plan but haven't talked to anyone about it, It should suffice to say that if things get unbearable by my definition of unbearable my hope is its mercifully brief.
Dr C. had no information on the orgasm change when I talked to him Tuesday. I wonder if anyone has studied this problem. The hospital took a urine sample to test for infection, when the resident called she said there was blood but no gross infection found. Heck, I drank so much water for the x-ray treatment before the sample was taken the pee was totally clear, it is a wonder it even tested as pee and not tap water. I'm impressed they even found blood.
Today's photo is the area of my pelvis getting radiation, it is the actual CT scan of me the hospital Physics department used to set up my position and radiation dose. I get 3 doses a day, one from each side and one from the back. they Davide it up to minimize the dose to neighboring organs. the dose to my hips is enough to give me a higher likelihood of having a broken hip in my lifetime. I get 1.8 Gray total per day (or 180 Rads absorbed dose. the new unit used is Gray) To put that in perspective The dose of radiation from a normal chest x-ray is 0.25 mRad. so everyday I get the equivalent of 720,000 full chest x-rays concentrated to my pelvis. A normal x-ray machine runs at about 70,000 volts, the particle accelerator they used to treat me runs at 5 million volts. Another interesting comparison is the radiation dose in Hiroshima at 1 m above the ground in open field at 1 km (.6 miles) from the hypocenter is estimated to be 4.5 Gy (less then 3 of my 28 treatments) At 2 km (1.2 miles) from the center it was only 0.08 Gy. I should note that the organ most sensitive to radiation, the small intestine is carefully minimized in my therapy. Somehow I find the comparisons interesting. Its amazing what our body's can tolerate.

3.) Radiation Therapy

Day #1 started Chemo and Radiation. After a simulated radiation treatment where they use a ct scanner rather then a particle accelerator to get the proper aiming set. the goal is to treat the tumor and surrounding tissue and lympth nodes while avoiding other organs. That being complete Today was the day for the first real dose of radiation. After the warnings about erectile dysfunction caused by all three therapy's - chemo surgery and radiation I wasn't real excited to get started. I wasn't and never have been convinced they do all they can to minimize the unintended consequences of treatment. I hate to seem ungrateful for them trying to help save my life but I have a strong interest in wanting it to still be a life I want saved. They asked me if I understood and consented to the treatment and I wasn't enthusiastic so I got to talk to the radiation doctor some more. He said it was up to me I could decide not to do treatment, he was not really getting where I was coming from. I relented to going ahead without all the information I wanted. I recognised he was not going to be able to teach me all he knows which is what I was after. The treatment was long and very painful. The radiation wasn't painful its the contraption they put you in to keep you in the same position. There was nothing supporting me from just below my nipples to my pelvic bone. The first few treatments take longer as they take xrays to verify your position and draw marks on you to keep you lined up. I never thought it had to be painful but was for what seemed no good reason. The x-ray photo is my actual position, I was told to drink a lot and let my belly hang as low as possable to get it out of the way.

2.) Colon Cancer Treatment Begins

The pathology report confirmed the tumor was an adenocarcinoma. Appointments were made for me to see a Radiation Oncologist Dr. C, a Colorectal Surgeon Dr. M and a Medical Oncologist Dr. H. CT scans of chest/abdomen/pelvis and lots of blood tests were ordered. Once this ball starts rolling it picks up speed quickly. I met with the 3 cancer specialists on 4/7 one after the other. Dr. M performed an Endoscopic ultrasound to view the tumor from the inside. The procedure was odd in that they have you get in a strange position like being bent over a saw horse while they insert the probe for the ultrasound in your bum. It looks like a chrome plated vacuum cleaner tube. The doctor watched a video screen and spoke with a student with him, I asked to get a printout of the screen he was looking at. He made a brief attempt, couldn't get it to work and gave up. He was much more interested in the student with him then he was in giving attention to me. He had me quickly whisked across the hall back to another exam room while he stayed with the student. After some time passed he reappeared and described a plan of 28 treatments of Radiation ehile taking Chemotherapy followed by Resection Surgery with a temporary illiostomy. Then followup Chemotherapy and finally if all goes well reversal of the ostomy bag to restore normal anal function. It was a long day with a lot of information. If I had to give the day a one word descriptor it would be "Impersonal" All the attention I was given was directed at the cancer and very little to me as an individual.

1.) Experience of a Colorectal Cancer Suvivor

First let me warn you this blog is not for the squeamish some parts are graphic and cover medical subjects. When it comes to my insisting on getting the treatment I should have I don't take hostages. The photo is a before picture of my polop before it was biopsied.
I started this as a personal experience diary but realized I wish I had been able to read more stories like this when as I started my treatment. I've scowered the internet for information to the point I jokiningly list Dr. Google as my primary physician. I have not seen anything in my travels that details each little indignity a rectal cancer patient gets to endure with detail and humor so here I go.
The adventure began the end of May 2009 with a visit to a Great World Famous expert in the field of colonoscopy. The reason for my scheduling the procedure was passing my 50th birthday and I had some painless rectal bleeding during bowel movements I assumed was hemorrhoids. The Skilled clinician I refer to has been known to paint the toenails pink of folks he knows can take a joke so I declined full anesthesia to head off the possibility - or participate in the laughter. I probably should mention here the kind doctor I'm referring to and evaluating so highly has done nail painting before and knows of my sence of humor making my pink toenail likelihood almost a certainty. The procedure was without much discomfort. I watched the video monitor as the camera explored my pink insides. A large mass was identified in the rectum and a electro-caurtey snair was used to remove a large portion of it. Lots of pictures were saved along the way to insure my scrap book would be gross well illustrated. The tissue samples were prepared for a pathologist to evaluate. It was a little odd to watch the little puffs of smoke from the caurtery as the tissue was snaired but it wasn't painfull. as the procedure came to an end I was dreaming of eating my first solid food and drinking something much tastier then lemon-lime flavored gogo juice. For anyone who has yet to enjoy the pleasures of a colonoscopy prep it really doesn't mater what flavor you get. If you keep it in your mouth long enough to actually taste it you were not given proper instructions. You should think of this as a bar game, the goal is to empty the cup in as few seconds as possable. I could probably come up with a variation of beer pong for bowl prep and make a fortune.