Vivenia's Journey:

Survivor: Colorectal (Colon) Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 4 years ago, Female, Age: 37

  1. 1
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    Vivenia's Avatar

    This isn't just food poisoning?

    Oh No

    Sometime in the middle of June this year my husband and I had dinner from KFC. The next day we both felt some stomach pain and experienced other GI upsets (more down than up if you get my drift). For my husband this only lasted for a day. For me the symptoms became increasingly worse. I had been ignoring physical fatigue for years now, I told myself that I had done too much at work, or something like that. Now on top of fatigue that became more severe, I had severe abdominal pain and bloating, loss of appetite, and as my husband pointed out rapid weight loss, I couldn't be too far from a restroom at any time or I had to fear the consequences. I was thinking that I was experiencing the absolute worst food poisoning ever known to mankind! Finally, on July 18th, once the pain became so bad that I almost couldn't function I went to the free student clinic at my school. (As my husband was barely starting a job after being unemployed for almost two years we don't have medical insurance, and money is really tight, I put off the Dr.'s visit as long as possible. It's silly now but I kept hoping it would get better on its own.) The doctor at the clinic was really nice, he talked to me about what was going on, and spent some time palpatating my stomach. He found a large lump, it extended from just above my right hip almost to my belly button, I knew it was there because it was very sore. Also, you could see that side of my stomach sit up about a quarter inch higher when I was lying down. At that point he did a pregnancy test, he said it would be a weird pregnancy, but he wanted to make sure. It was negative, at that point he told me I needed to get into a facility that had imaging equipment because there were several problems that could cause this. At that point he thought it might be a ruptured appendix, but he couldn't be sure. He did tell me that I needed to get in to see someone as soon as possible, because this was potentially life threatening. I went home and texted my husband. I was worried about huge medical bills, we are already struggling to keep our house. We called a local clinic and asked about being able to make payment arrangements, that turned out to be a waste of time because I couldn't get a hold of the appropriate department, and they still have not returned my voicemail message. We ended up going to the ER. In the ER they did a urinalysis, and took a whole bunch of blood. A doctor stopped by very briefly to palpatate my stomach and ask a few questions. Then we waited until a nurse came and checked up on us, and we waited again until the financial information girl stopped by, and we waited again until the nurse came to get me ready to go in for an ultrasound. When they did the ultrasound they looked first for a cyct on my right ovary, but there was obviously no involvement there. Then the tech pushed the probe in all sorts of directions trying to get the whole mass in one shot so she could do a measurement, she eventually went to get someone to help her figure that out. Then we went back to our room and waited some more, I was in quite a bit of pain as a result of the ultrasound, luckily the nurse stopped by eventually and was able to administer some pain relief through my IV. The doctor came back and said the blood tests showed me as anemic so he had to do a rectal exam to check for bleeding, that was quick and made my husband grin, I'm glad someone was amused. Luckily there was no bleeding, and we waited some more. Eventually the nurse came back and said that they were going to do a CT scan because they didn't have a real idea of what the mass was from the ultrasound, she said I'd have to drink two quarts of some kind of solution to make it visible over two hours. And we waited some more, eventually a nurses aid brought two huge cups of "crystal light" for me to drink. I worked at that and my husband and I talked about all sorts of stuff, we were both starving so a lot of this talk was about food. The doctor and nurse stopped by to see my progress on the drink, by this time I was feeling nauseated, so they gave me some kind of anti nausea drug through the IV. The nurse said if I felt like throwing up to let her know because she didn't want me to throw up the solution. Luckily I didn't, and when another nurse came to take me for the CT scan I had been able to mostly finish the second quart. The CT scan was unpleasant, whatever they put through the IV for the second part of the scan made me throw up, I got most of it into the blue baggy she gave me, but some made it into my hair and onto my hospital gown because I couldn't sit up. And once I got back to my room (really a cubby with a curtain, but at least it offered some privacy) we waited some more. The first doctor stopped by to say he was going home and he'd turned my case over to one of his partners. Then we waited some more (a common theme in the ER I'm sure), then the new doctor stopped by very quickly to say he was on the phone with a specialist because he wasn't sure what he was looking at, the specialist wanted to know if I could drink a whole bunch of liquid for a colonoscopy, and could I wait while he finished speaking with him. Of course I said yes to that question. And to follow a common theme we waited some more, once the doctor came back he said that the wall of my colon was very thickened, but that the solution had made it all the way through. He said I didn't need to stay the night, I could go home and drink the goLytely and come back tomorrow for the colonoscopy. I was relieved about being able to go home. We had to wait about two hours for the goLytely to get to us, the nurse was frustrated with the pharmacy, for some reason it took them forever. I won't say much about the goLytely, aweful stuff blegh. My husband and I decided he should go to work because it was only his second week, and he'd left early the day before so he could take me to the ER. My sister took me to my colonoscopy appointment. I kind of remember waking up mid-way and groaning, the nurse came running over to me, and someone yelled "give her more" and I was out again. When I woke up the next time I was in the recovery room and the doctor that had preformed the colonoscopy was there with pictures. He said that I had a 10cm mass almost completely obstructing my bowel, he didn't think solids were making it past, and that it had lymph node involvement. He mentioned that it might be lymphoma, I didn't believe him but my sister freaked, I guess to give her some credit I was all drugged up and the pictures showed an ugly yellow thing taking up most of the space between the pretty pink walls of my colon. The doctor said also that he'd had a surgeon up to take a look, and I had a consult set up with him when I was ready to get up. They left the IV thingy in my arm because they thought the surgeon might decide to operate right away. We went downstairs and signed up at the surgeon's office (I hated having to check in twice the same day, especially the second time because I was so groggy). At this point I really wished that I'd told my husband to XXX work (they were actually really good and let him have as much time as he asked for) and come be with me. I almost fell asleep waiting in the examining room, a student (not a doctor yet but lots of schooling?) came in and asked me a bunch of questions. Then a while later the surgeon came in and we talked about what was going on. He said they'd have to operate and take out part of my colon along with the tumor, that we wouldn't know for sure what it was until someone had it under a microscope but that it was most certainly some type of cancer. I don't clearly remember the rest of that conversation, I do remember that he said treatment was very successful and I shouldn't be scared. I left feeling reassured, and also naively thinking that the doctors had no idea what they were talking about, this mass was just random bad tissue, no way it could be cancer. The surgery was scheduled for July 25th. The surgeon said to eat soft bland food, and if I started throwing up and couldn't stop to call and they'd have to do the surgery as an emergency. This gave me almost a week to get things sorted with school, and talk to my family.

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  2. 2
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    Vivenia's Avatar

    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    During the time waiting for surgery my husband and I spend a lot of time together. The surgeon had told me to eat soft, bland food, and I found that what I enjoyed most was dolmades and lemon rice with white sauce from a Greek place about an hour drive away. My family were all quite a bit more stressed than I was, my mom called everyone and told them that I had lymphoma. In response to that I made a note on facebook explaining what was happening, and that we didn’t have a concrete diagnosis yet, and I was hoping to get a diagnosis of not cancer. I went in to speak with one of the financial aid councilors at the school, I wanted to know what would happen to my financial aid for next semester if I didn’t pass my classes, at this point I was passing three, and failing one. However, from my discussion with the surgeon I was worried that I wouldn’t be able to keep that up, especially as finals were less than four weeks away. I had been weak and ill enough to not be able to quite keep up my normal studying habits and I had no idea how well I’d be feeling after surgery. The councilor told me that I needed to pass at least two of my classes with a C, if I did that I could expect to go on to the next semester on a probationary period, and that the financial aid would be ok. He said if I couldn’t pass my classes that I could appeal, and my reason was good enough that he thought everything would be ok. The morning of the surgery, July 25, 2010, I got up and called the hospital to see what time to check in. They had told me to call at 10am. The lady on the other end of the telephone asked if I could be in by 10:30 or 10:45, I had been calm and relaxed about the surgery up until this moment suddenly I felt as if I were going to throw up and cry at the same time. In the car on the way to the hospital my husband told me that he was the most scared he’d ever been in his life. Checking in was easy because I’d printed an express pass at home, all we needed to do was scan a barcode, double check that it was the right name, and type in the number of our buzzer. We then got to sit in the huge waiting room along with all of the other people there. When the nurse came to get us I was relieved to have that part of the waiting over with. She weighed me, and took me into a little room so she could ask all of the normal questions, allergies, drugs you’re taking, etc… Then she took us into a room that was remarkably similar to the one we’d waited in while at the ER a week ago. She wanted me to change into a gown and pee in a cup (the joys of being a woman and sick, pee in a cup so we can make sure you’re not incubating a baby, doesn’t matter you’ve already had three negative pregnancy tests this week). Once I was changed I rested on the bed while we waited. Soon two nurses came to get me prepped. They were fun, we visited and all had a good laugh about me thinking this mass was food poisoning. One of the nurses told me that the surgeon had wanted her to write that they were resecting a “ginourmous” tumor. They had to try three times to get the IV in, the first one hurt quite a bit the nurse said it felt like it might have been a dull needle, it didn’t feel dull to me. The second IV left a huge bruise on the back of my hand and wrist. I was very glad when the third one went in with only a little wincing from me. Then they took a whole bunch of blood, so much that the nurse had to hook up a syringe to suck the last bit out cause my veins weren’t pushing it out anymore. At the end of this the nurse hooked up a big bag of clear stuff that she said was like Gatorade. At some point during this process my maternal grandparents arrived, it was nice to see them. Then, I had an EKG, just to be sure because there’s a family history of Hypertrophic Cardiomyopathy and I’ve had unexplained heart problems in the past two years (not that the medical community didn’t do enough tests trying to explain them). Happily that came back normal. The surgeon paid a flying visit to say hi, and explain a few points about the surgery. And after him the anesthesiologist stopped by to explain the difference between managing pain with an epidural and IV drugs, we chose an epidural because he said recover would progress more quickly that way. Once we’d chosen an epidural they hooked up some antibiotics to the IV and it was time to go into the surgery room. They wheeled me down a hall, and when I turned my husband and grandparents went straight. I didn’t like getting the epidural, it felt weird going up my spine and when it stopped moving it made my shoulder blade hurt. However once it was in I couldn’t feel it at all. They had me lie down once the epidural was in and they put a mask on me and I was out. Waking up wasn’t pleasant at all. I woke up already screaming, there was a crowd of people around my bed, and a guy down at the foot of the bed said “stop hollering.” I replied, “it hurts.” He said “it’s supposed to hurt, you’ve had surgery.” I asked “can I go back to sleep?” Several people said “NO” to that question. After that I think I just cried and kept saying “I’m sorry” over and over, actually I remember that I asked for my husband, and the nurse next to me said I could see him when I went to my room. I don’t remember exactly what everyone was doing, but I think someone put an icepack on my belly, and I know someone handed me a little button with a green light, they told me when the light lit up I could push the button for pain relief. I watched that button like my life depended on it! Soon someone came and asked a question, I think about taking me to my room, the nurse with me told them that I’d woken up screaming, I have no idea how that answers the question. Finally they wheeled me away; I wasn’t paying attention to much more than the button though so I’m not sure how long the journey was to my room. Once we were there they had me parked in the hall for a moment, during which my grandmother came out to speak with me, I don’t remember much of what she said. I, rudely, wasn’t paying attention to anything but the little green light on my button. Once I was in my room the nurses did some things to hook me up to a ton of stuff and then they went away. I was happy to see my husband, I wanted a hug, but in the bed with the rails up I don’t think we managed much more than arm and cheek contact. I was tethered to the bed by an oxygen tube, a blood pressure cuff, an oxygen monitor, my IV, my epidural that went to the IV stand, a catheter, and two leg pump things. Eventually the number of tethers to the bed lessened, but having to call a nurse for help every time I needed to tinkle had gotten very discouraging by the time I left, I was starting to think of myself as an invalid which is never a good thing. The hospital wasn’t fun, but the nurses, physical therapists, respiratory therapists, nurses aids, janitors etc were all very nice. I’m not normally someone who likes to talk in detail about bodily functions so explaining to everyone who came in that yes I’d passed gas, no I hadn’t had a bowel movement yet was kind of silly. Not to mention that every bit of urine I passed was measured and written down in a chart, along with how much water I had going in. By the third day when I did have a bowel movement I was so used to the questions that I bragged about it, which later I was embarrassed to realize. They only let me have water on the day of surgery. The next day I was on a liquid diet, and really enjoyed my first bit of flavor in more than 24 hours beef broth. You can probably imagine my dismay when I threw it up about 30 minutes after finishing it, that got measured and written down too. I was able to keep down the rest of the liquids that day, and the next several days I was on a post surgical diet. Post surgical diet means no fresh fruits, no fresh vegetables only cooked, no fried foods. I was supposed to eat six small meals a day, I think by my last day I’d worked my way up to four small meals a day, and I’d thrown up some more. Because of the throwing up, and the fact that we’d run into some snags switching from epidural to oral pain management I ended up being kept for an extra day in the hospital. I was so glad to go home, even if I was nervous about being home by myself. I quickly learned that maneuvering my way around was much easier without the IV stand holding me back. While in the hospital the surgeon told me that they were still doing tests on the tumor, he was going to speak to some people about it in a conference, and he’d let me know what it was when they took the staples out on August the 7th. So here I was again, waiting to find out what exactly was going on.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    Vivenia's Avatar

    Chemo?

    Decision Point

    Most of my time waiting for a diagnosis was spent in healing. The surgery had conveniently come just shy of four weeks before finals for the summer semester of school, I should have spent tons of time studying for my tests, instead I spent tons of time online reading up about cancer and chemotherapy. At this point I was still really hoping to find out that I didn’t have cancer, but I wanted to be informed once the doctors started talking about treatments. The day after coming home from the hospital I was pleasantly surprised to find that I could get around by myself, I kind of had to because my husband went to work. My mother in law stopped by to visit for about an hour, but mostly I was on my own. The trickiest part was getting in and out of bed, I avoided that problem by sitting in the recliner in the front room and watching Top Gear, or snoozing, all day. I was anemic in the hospital, they’d given me two infusions of iron through the IV. I came home with a prescription for iron pills, I stopped taking them because they made me throw up and be constipated. On August 7, 2012 we went in to get the staples taken out. By this point I was really happy to get them out, they were itching like crazy. The incision had never bled, wept, seeped or given me problems above the pain and weakness you’d expect when your belly is cut open from top to bottom. We talked to the surgeon. He told me that he hadn’t known what he was talking about in the hospital, it wasn’t lymphoma after all. I rejoiced for two seconds at this point, because I’d been told it wasn’t lymphoma and it wasn’t colon cancer. However, before I could rejoice too much he said that it was definitely colon cancer, he looked through tons of pages of stuff and told me that they had done a whole bunch of tests, and sent it out to a bunch of places. The surgeon also told me that they suspect that I have lynch syndrome. He didn’t tell me at the time, but lynch syndrome can affect three genes, which all have to do with dna replication. The reason they think I have this genetic condition? My age at diagnosis, and the place that the tumor presented. He suggested that I speak with a genetic councilor and have a test done to determine if I am a carrier, because there are other risks for other types of cancer, mostly endometrial cancer. We talked about having a port placed. At this point I was still thinking anti chemo thoughts so I didn’t pay as much attention as I should have. I do remember that he told me I have the veins of a 12 year old, too bad I can’t consider that a compliment. Then the surgeon left and had one of the students take my staples out. The staple removal went much more smoothly than I had anticipated. He removed them by hand with a little tool that looked kind of like eyebrow scissors, but it had two prongs on bottom, and one on the top centered between the two top ones. When squeezed around the center of the staples it causes the staple to widen out, then a gentle wiggle back and forth and the staple comes out. Most of them came out with just a little pinch, one felt like it had fused itself to my belly, that one hurt. They all bled just a little bit, and he put steri tape across so it was white strips of tape dotted with tiny dots of blood. I didn’t make the connection for a few days, but I received my positive diagnosis of colon cancer exactly 25 months after my youngest brother died of a congenital heart condition called Hypertrophic Cardiomyopathy. I think the timing on that wasn’t an accident, he’ll be the general in my fight against this cancer. He was only 16. During the past two years my dad, another brother, and a sister (I’m the oldest of 8) were diagnosed with the same condition and had ICD’s implanted, my sister died and was resuscitated on the operating table in January. An ICD is like a pacemaker with a defibrillator attachment. Just a few weeks after my diagnosis another sister and brother received positive confirmation that they also carry the gene for this heart condition. I have one more brother, and one more sister who still need to undergo the test, as well as myself. I guess that they will be able to test for HCM and lynch at the same time. As you might imagine, me being diagnosed with cancer, and the possibility of it being because of a genetic anomaly was not welcome news. I personally have been able to be pretty calm throughout most of this process, I’ve had private moments when I freaked out, but mostly I’ve been able to maintain my sense of humor and calm. My family is a completely different story. I understand why, if I’d found out that one of my siblings were sick with stage III colon cancer I’d freak out too. My parents took the death of my brother very hard, they don’t talk about it as much, but they are still really sad. Me getting sick like this reopened some of those feelings. I felt kind of bad, but I mostly kept away from discussing those emotions, simply because I was so focused on being positive. The talk with the oncologist didn’t go the way I had planned at all. Firstly because my computer died the day before the appointment, so all my carefully typed up questions were lost, Secondly because I woke up and puked and spent the rest of the day feeling like death. My husband got home from work, and we went to the appointment a little early to fill out paperwork like they had asked us to. Some of the questions made me wonder about some of the symptoms I had experienced, not even thinking about them as a problem. The main one, night sweats. I have been sweating so much some nights that I’ve soaked through my pajamas and my sheets. The oncologist asked a bunch of questions, then he had me change into a paper shirt and did a quick examination. Then he talked to me about the treatment. Two things that surprised me during that conversation; First, I completely forgot to ask how many lymph nodes they removed, but they found 18 that tested positive for cancer, some of those the surgeon had hunted down because they weren’t in the area of the resection. Can I just say that I am forever grateful that I lucked into such a meticulous surgeon, he was on call during my colonoscopy and they called him in for a consult, I wouldn’t have had any idea who to talk to. Second, the oncologist asked me if I’d had any transfusions in the hospital, I said no, but they’d given me some iron. Evidently my hemoglobin was at 6.5 when it’s normally supposed to be at 12. He told me that I looked pale to him, and he sent me in for a blood test. He also had me schedule an appointment with the surgeon, and a followup with him. While I waited for my appointment with the oncologist I spent a lot of time praying about chemo. Before I prayed I felt terrified of even the idea of chemo, after I prayed I felt terrified of the idea of NOT doing chemo. The oncologist said that I’d be on chemo for 6 months. I might lose my hair, or it might just thin out. The chemo would be administered once every two weeks, and I’d wear a pump for two days after. The drugs will be 5-Flourouracil (5-FU, Adrucil, Flourouracil), Avastin, Oxaliplatin, and if we could get it Leucovorin (I think this is the one he said we’d do if we could get it). The part of the conversation with the oncologist that scared me the most was when he was talking about the lymph nodes and tumor. He said that 18 is a lot of lymph nodes and that may raise my chances of reoccurrence. The tumor had a lot of necrotic tissue, that means that it grew so quickly that it couldn’t create blood vessels quickly enough. I don’t want to think about quick growing cancer floating around in my body while we are waiting until I’m a little more healed before chemo. Also, we’re still trying to get Medicaid; they’ve told me that the process can take months. Mostly I try not to think about the how’s, I stress too much, I just keep telling myself that everything will work out. How can it not work out? I’ve got my brother Jesse to be my general.

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  4. 4
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    Vivenia's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  5. 5
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 4 years ago
    Vivenia's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I went in for my first chemo appointment yesterday (11.7.2012). I had to be at the IV Therapy center in my hospital at 7am. The nurses were all really nice. They took me back and accessed my port, the way she talked about it I expected it to hurt a lot worse than it did so I acted kind of like a baby. Once my port was accessed they started the saline flush and pushed the anti-nausea medication. They also gave me two tylenol tablets to take orally. At that point she called down to have the chemo drugs prepared and we had to wait for a while. First they gave the Avastin, which took about 30 minutes. I knitted for this part, I was surprised at how well I felt. After the Avastin finished they flushed the line and gave me calcium and magnesium (two cute little bags) those also took about 30 minutes. Then she flushed the line again, and remembered that she needed to do a D5 (Dextrose) flush instead of the saline, so we had to wait a few minutes for that to be sent up. Then they started the Oxaliplatin and Leucovorin. Those took two hours, pretty soon after they started I got really sleepy, I think I dozed for most of the time that they were going. I got cold while I was sleeping so one of the nurses brought me a warm blanket, there's nothing quite like a warm blanket for comfort in the hospital I think. Once the Oxaliplatin and Leucovorin were finished she did another flush with the D5, and another 30 minutes of the calcium and magnesium. Then another flush, this time with saline. (each time during the flush they took my vitals to make sure I was doing ok) At this point I asked about the pump I had been told that I would be wearing for the next two days, the nurse had another one call my oncologist because that was supposed to have been scheduled with a home care center. While they were figuring this out she did a push of 5FU (5 Fluoracil), evidently a push is when they give the medicine through your iv with a syringe. That took about 5 minutes. Then she did another flush, unhooked most of the tubing, leaving a short length hooked to my port, and gave some heparin followed by saline. Then once the tubing on my port was clamped off I was ready to leave. I think it was about 3pm. One thing I didn't expect, but makes sense to me now, is that I had to make several trips to the restroom while I was there. They gave me something like 8 bags of liquid through my IV. At this point they still hadn't figured out about the pump, so they gave me a phone number to call and sent me on my way. It took several hours to get everything straightened out . The home care nurse came out at 7:45pm, and the delivery guy with the 5FU and supplies got there at about 8:20. The nurse went over the normal paperwork, and entered the supplements I'm taking into her computer to make sure there wern't any contraindications. There wern't. Once we had the supplies she showed me the ins and outs of the pump, and then got me all hooked up. So for the next 46 hours I'm hooked up to a black fanny pack that has quite a length of tubing leading to it from my port. I've been lacing the tubing through my shirt buttons to hold it still next to my body, and coiling the extra to tuck into a hole in the back of the fanny pack. I was feeling so good after the IV treatment at the hospital that I didn't call my doctor to get a prescription for anti-nausea tablets. I regret that, once the shot had worn off, and the 5FU was hooked up I began to feel quite nauseated.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    about 4 years ago
    Vivenia's Avatar

    Other

    Side Effects

    I'm currently on my 6th round of chemo. I haven't updated here very frequently, I find that I feel better when I spend less time thinking about cancer, so I picked up knitting and pretend I don't have cancer most of the time. Some of the side effects I have experienced, severe chest and left arm pain - that they were afraid was my heart, they halved my dosage of 5FU and that still happens occasionally, but I find that if it starts to hurt I just need to lie very still for hours on end, I don't want to have to go back into the ER again only to be told they can't find a reason for the pain. I've gotten a whole body rash, which is rather unpleasant. At first I thought that I was breaking out into tiny zits, but they soon spread so fast and got so unpleasant I needed to call the doctor, he prescribed a drug for that, I'm on the first day of that so we'll see how it goes. The zofran they gave for nausea makes me throw up, so they switched me to compazine, that makes me extremely anxious and jumpy, to the point where I'll burst into tears for no reason at all. That is severely unpleasant as far as side effects go, They prescribed Lorazepam for the anxiety, and it has the wonderful side effect of no nause, so between the lorazepam and the compazine I'm sleepy, and actually have an appetite. I hope this trend stays. Most of the other side effects were expected, if no fun to deal with. The runny nose, sensitivity to cold etc... and people tell me, "well at least you didn't lose your hair" as if I wouldn't trade my hair to get rid of some of the other side effects.

    3 Comments
  7. 7
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 3 years ago
    Vivenia's Avatar

    Lynch Test Negative

    Celebration

    I had blood drawn to see if I have Lynch Syndrome months ago. It finally came back negative!!

    0 Comments
  8. 8
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    almost 3 years ago
    Vivenia's Avatar

    Followup Appointment

    Other Care

    I had an appointment with my oncologist Thursday (4.24.2014). Just one of my normal every third month followups. My bloodwork was good, cancer markers low, blood counts normal, chemistry good. My oncologist wanted me to go in for a colonoscopy, yuck, but probably good if we can get any polyps out before they can grow. He also scheduled an appointment for me to see a genetic councillor, I'm not sure what I think about that. He also said I have to go back and see my gynocologic oncologist, I've been bad about following up with her. That's about my endometrial cancer though, so I should probably share those thoughts on that timeline. The good news is that as far as the colon cancer everything looks really good!

    0 Comments
  9. 9
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 2 years ago
    Vivenia's Avatar

    colonoscopy

    Procedure or Surgery

    5.21.2014 - Had the first colonoscopy since the one right before my hemicolectomy. This prep procedure was much nicer. Instead of the repulsive goLytely I had to take some dulcolax, and then drink a bunch of miralax which was mixed up in gatorade. Everything was clear, and the endoscopist said I could wait for 2 or 3 years before I have another one.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  10. 10
    • Vivenia
    • Experience with Colorectal (Colon) Cancer
    over 2 years ago
    Vivenia's Avatar

    Lynch Syndrome

    Oh No

    Last year I was tested for Lynch. The lab took six months to return a negative diagnosis. This year when I finally went in to talk to a genetic councillor it turns out that they only tested one gene, and the one they tested less than 10% of the people who have lynch have problems with this gene. So we ordered a full panel of tests. She called me today to let me know that the test came back positive. So now I'm waiting for the letter, so I can make sure my family knows what testing they need, so they can get the screening they need, and catch any problems early on. I would say based on my experience that it would always be of benefit to speak with a genetic councillor for any genetic test, they know more than your oncologist will.

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