Anal Cancer + Liver Mets;Tim's Terrific Adventures So Far!

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Anal Cancer + Liver Mets;Tim's Terrific Adventures So Far!

Postby tpmack37 » Thu Apr 22, 2010 6:39 pm

To start, I was in the middle of getting very healthy. That's where the irony kicks in. :lol: In August 2009 I was diagnosed with diabetes Type 2 - My doc had warned me I was too sedentary in the job, too in love with M&Ms, and needed more exercise. Now it was official, I had crossed the line and had to change. I was bound and determined! Took the 10 hours of Diabetes education, 2-4 hours nutritionist education. Checked my blood 2x/day, took meds, dropped all sugar, candy, soda, and started taking walks. Lost over 20 pounds, and had things under control! By November and December, I occasionally notice some blood in the stool or on the toilet paper, but I figured that was my high fiber diet! I was getting so healthy I was bound have a little blood, eh?

In the beginning of February I saw my Doc. The guy was raving! He wished all his patients would react like I did: Lowered bad cholesterol; raised good cholesterol, dropped Blood glucose and lowered A1C over 3 points - a huge change. Lost weight, surpassed all my goals. He was thrilled. "There's one thing that bugs me though", I said. "I get bad pain and bleeding just about every time I go number 2 nowadays, and I think it's hemorrhoids." I think he was having too great an appointment to stop and look at my butt, so he takes out a pad and write down the name and number of a surgeon who can fix my butt.

I get to the surgeon's office embarrassed but full of hope - this is so weird - but it's the last thing to do to really take control of my good health! :luck: I'll get my 'rhoids' fixed and then when I turn 48 in March, I'll really be a healthy guy who's ready to keep up with my two girls as they go through teenager world, continue to do my best at work, and try to be a good and loving husband. What could possible go wrong?! :thumbup:

As I explained the pain, he said if I had something that hurt that much I probably have a fissure and he could fix me up. He didn't seem to find what he was looking for, finally he says, "I'm going to look inside." In what seemed like seconds, he was telling me to turn over and sit up and he says: "You have a growth." I said, "what?" He said, "a growth, you know, a tumor, and I am very concerned. We need to do a colonoscopy and a biopsy and find out what we're dealing with. I said, "uh...OK" :shock:

Which leads to diagnoses day 1 of 3! : oops :

February 14th, ah Valentines day! :smooch:
:hug: Will it be a quiet dinner?
A deep meaningful card?
NONE OF THAT! It will be 12-hour Bowel Prep! :cheer:

February 15, I came out of my "twilight sleep" of the colonoscopy / biopsy with the doctor telling me: "Tim, you have rectal cancer. I'm going to remove your rectum, and you'll need a colostomy, but we will save your life!" ( Diagnosis 1 )

February 16 - I get a phone call, "Tim, it's Tim! (surgeon shares my name) I was wrong! It's not a rectal tumor growing down into your anus, it's an anal tumor growing up into your rectum!" (I had no comeback for such a statement) Finally I say, "Is that good?" and he says, "YES! I won't be cutting you open and taking parts out - we can fix this with chemo and radiation!" I Said, "OK!" (Diagnosis 2)

A couple days later, after getting catscan, I got pushy and asked to talk to my doc for a couple reasons. I was really curious about the catscan and a little annoyed that no one told me how it turned out. I wrote a note and made sure he got it. Then another phone call! "Tim, it's Tim! I've made some time for you tomorrow morning and I want you to bring your wife" - It never occurred to me that "made time for you" and "bring your wife" are bad things to hear. This led to the next morning me seeing my liver on the screen covered from stem to stern with lesions - both sides, front and back. Dozens and dozens. I texted my sister the nurse to let her know it had spread to the liver. She said, "how do you know?" I said, "I saw the CT." Later when we spoke she said, "how big is it?" I said, "how big is what?" She said, "the tumor on your liver?" I said, "there's not one, there's about 30 or 40." And then for the first timeI know of, my sister, the very professional nurse who has seen it all, suddenly went silent. That ain't good - I thought. (Third diagnosis: Squamous Cell Anal Cancer with Mets to the Liver)
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The surgeon who discovered both the anal cancer and the Liver mets was very positive when he thought it was just the anal tumor, but was not very encouraging after seeing the liver. He kind of patted me on the back and said I was dealt a bad hand and that how I approach each days is what it's all about, etc etc. He made it sound like I was dying soon. :cry: His next job was to pass me off to the cancer center downstairs, but I would see him again in a few days as he was the guy putting the port in me. I chose getting the port on the right side, assuming that would leave it possible for me to still play violin and guitar. The Cancer Center was a bright. clean place with happy and caring people - I felt like I was in a good place. I met my oncology team ! A Chemo Doc, a radiation doc, all sorts of nurses and assistants getting all sorts of info from me. It was over a week before anything got started, but I learned they was some planning involved in setting up this 6-week treatment.

All the while, and since before the diagnosis, the very act of passing stool had become and extremely painful problem, and a daily one. It seemed that the tumor was blocking most of the canal leading out and it hurt getting anything out. This also brought about more pushing which inflamed the hemorrhoids which never did get removed. This problem would become probably the biggest issue in my battle so far. one that included constant changes in laxatives, immodium and lomotil, constant baths before and after a movement, bowel movements that took all day, guzzling gallons of water to try to make something pass, raising and re-raising my pain killer dosage to the point where we're on the verge of trying morphine so I can poop without screaming bloody murder. The radiation cumulatively added to the problem in several ways, 1) caused spams in the bowels (I did NOT feel) that formed small round, extremely hard and dry (and SHARP-edged) stools. 2) apparently one of the side effects was to narrow the canal the stool must go through, and 3) When the battle to expel the little sharp, hard, ping-pong ball sized poop became strong with lots of pushing, I suddenly got Big Spasms inside (which I could feel). These spasms would take over my body and cause intense pushing that I could not control. At this point, I believe I got a couple hernias out of the deal due to the intense pushing/spasming. So you see, I had a sort of "perfect storm" of symptoms that were custom-made to cause intense pain, and have no simple solution! :angry: Or, rather, it seemed like there ought to be a simple solution to this, but no one was getting it. Every time I saw the docs or nurse, I had the same problem, and everyone was sure they had a good idea this time, but nothing seemed to solve it. I went from Senokot, Miralax, and colace at high dosage several times a day to, Immodium and/or Lomotil and how my body responded was almost exactly the same! One day, "just another day at home" the spasms kicked in very hard. One of my ways of trying to stop the spasms was to stand up and squeeze my legs together to hold back the force of the spasm...(sometimes I also laid flat on the floor on my belly - have a few scary stories in just about every position!) Anyway, standing above/in front of the toilet trying to hold back the worst when something sort of burst - a hemorrhoid? whatever it was, it left a whole lot more blood than the average day (I'd bleed daily, but this was big). So for the first time in many weeks I actually drove myself to the cancer center! I had been not driving because of the oxycontin and oxycodone I was on for pain. Still it was hard to explain to them how much passing a stool hurt, how much energy it took out of me, how it took so much of my day, etc! It was frustrating for me for many reasons (mostly pain) and frustrating for the docs and nurses because they really want to help!

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Anyway - the cancer treatment was the same as lots of folks around here have mentioned: 6 weeks radiation with 2 weeks chemo. For me specifically, 28 days radiation, the chemo was week 1 and 5. I just finished the radiation last week and the chemo the week before. I am now officially on 4 "recovery weeks" after which we'll do a catscan to see where things stand. The assumption by the doctors is that the anal cancer tumor and any cancer around it will be killed off by the 6-week treatment. The big question is the liver. How did the lesions respond to the 2 weeks of chemo. What will I have to do next?

So that's that. I have a bunch of little stories of things during the radiation and chemo, but I think I spent too much time already on the butt problems above. To add a somewhat happy ending, I would like to add that something has changed for the better in the bowel movement situation. Just 2 days ago, the shape changed from round rock with sharp edges, to cylinder shaped. It is only slightly softer, but it is passing easier. The last few stools had NO blood! This has continued since Wednesday morning.

Tim

PS: Maybe this can / should be added to the "Anal Cancel" Forum? Thanks
tpmack37
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Posts: 478
Joined: Sat Apr 17, 2010 8:39 am
Location: Malvern, PA
Cancer Diagnosis: Stage IV Anal Cancer - Liver Mets - Lung Nodules are back
Relationship To Patient: Self

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