"The first thing I realized is that a survivor is a victim with an attitude. After I understood that, things were a little better. I had a choice about something - I could be a cancer victim or I could be a cancer survivor. I liked the idea of having an attitude and I liked the sound of being a survivor."
02/22/99 - I returned the card to the lab.
04/05/99 - Had a return appointment with my doctor. The stool sample card came back with a "trace of blood" in one of the samples. Doctor recommended that I make an appointment for a flexible sigmoidoscopy at the office and a Barium Enema at the hospital to see what was going on. I tried to talk her into letting me do the cards again...she wouldn't go for that at all...thankfully.
04/13/99 - Had the flex sigmoidoscopy at the doctor's office. She saw what she thought might be diverticulosis. The Barium Enema at the hospital was "inconclusive". Doctor gave me a referral to a Gastroenterologist (GI) for further tests.
05/11/99 - Had first appointment with the GI. We scheduled a colonoscopy for the next week at the hospital.
05/20/99 - Colonoscopy showed a lesion in the S-curve of my descending colon. Doctor set up a CT scan for that afternoon and referred me to a surgeon for immediate follow-up. The CT scan showed an "irritation on the bowel wall" but all other organs were clear.
05/24/99 - Met with the surgeon and surgery was scheduled for the following day.
05/28/99 - The Oncologist gave me the pathology report. The lesion was classified as Stage II T3N0M0. T3 is the stage, it was into the bowel wall; N0 is no lymph nodes are involved; M0 is no metastasis. It was a "moderately differentiated adenocarcinoma". This means it was not a really aggressive cancer. It had not spread past the bowel wall. This was wonderful news. The Oncologist recommends chemotherapy just to be sure that any stray cells will be taken care of. I have a follow-up appointment scheduled to discuss this further.
05/31/99 - Homecoming! What a wonderful word. Each day I get stronger and feel better.
06/10/99 - Had my initial visit with the Oncologist. He is a wonderful man, very understanding and caring. I know he has an extraordinarily hard job and he does it with grace and compassion. I will start chemotherapy on June 28, 1999. My chemo routine will be five days a week for one week, then three weeks off. The one on and three off routine will continue until six rounds of chemo are complete. I will be taking a combination of Leucovorin and 5-Fluorouracil. Leucovorin is a synthetic form of the B vitamin Folate. It is being used with a cancer drug, Fluorouracil, commonly referred to as 5 FU.
By itself, 5 FU has been used against colon cancer for years. It interferes with cancer growth by binding to an enzyme needed for cell reproduction. Leucovorin seems to strengthen the bond between 5 FU and the enzyme. The drug/vitamin combination holds onto the enzyme for a longer period than the drug itself.
Some side effects (oh, joy!) are possibly diarrhea, nausea/vomiting, mouth sores, lowered blood counts and/or skin rash.
06/21/99 - I started taking L-Lysine today as a precaution against the dreaded mouth sores. L-Lysine is an amino acid that helps combat Herpes Simplex (cold sores). It is available over-the-counter at pharmacies. Hope this helps, I hate cold sores.
06/28/99 - Well I had my first chemotherapy treatment today. In some ways I was anticipating it being a lot worse than it was. I first get a butterfly angiocath. This is a small 23 gauge needle with a small tube attached to it. Then I received three shots through the angiocath, Leucorvin, then 5 FU, then saline to make sure everything was getting into my system. At first I had a funny taste in my mouth and felt just a touch lightheaded. Later I felt queasy and a bit nauseous. But nothing overwhelming; just an uncomfortable feeling. I took 15 mg of Compazine and the queasiness went away within five minutes.
06/29/99 - Second day of chemo and I am surprised at how quickly the treatment went; under 10 minutes. The nurse did tell me to watch out for diarrhea by the end of the week. Isn't it great to have something to look forward to?!!!
06/30/99 - Oh Joy! Diarrhea. At least I didn't have long to "look forward" to it. And thankfully, it wasn't that bad and ended quickly.
07/01/99 - And now we have the other favorite cropping up (no pun intended!) vomiting. I have had queasiness all along, but this was the first active nausea I have had.
07/02/99 - Last day of chemo for this round. Can we say HOORAY!?! Now I have a three week rest before I start the next cycle. I took my Compazine BEFORE my treatment this time and that made a big difference. The nurse told me to take it twice a day through the weekend to prevent any other bouts. So far so good. I have noticed a canker sore on my lip, but not sure if it is from the chemo or from biting my lip...I know, I try not to but I seem to do it anyway.
07/05/99 - I woke up with full blown mouth and throat sores today...lots of little canker sores all over. Not fun. Had to call the Oncologist and have him call in a prescription for a Benadryl-Maalox-Lydocaine mouthwash to ease the pain. I have to go in to see him tomorrow. The worry is that with the pain of swallowing, I will dehydrate because I won't drink enough fluids. Also, this can be a sign of lowering white blood cell counts, which is not good. That would mean I would be more prone to infection.
07/06/99 - Had to see the Oncologist today and got scrips for another mouthwash and pain meds and had some blood work drawn. This is helping with some of the pain of the sores. Hard to eat and swallow, but I have to make sure I take in fluids.
07/07/99 - Saw the Oncologist again today and go back Friday for more blood work. So far I have some of ALL the symptoms that MIGHT occur. The Oncologist said we will probably reduce the chemo dosage next go round. He was really surprised at my reaction so far. He said watch for more hair loss next week because of the way things are going. I also have little blisters on my finger tips. This is just sooooo much fun.
07/10/99 - Had a good day, until the diarrhea hit in the early afternoon...but it was over soon and didn't have another bout of it. That night however I had sharp pains in my upper right side and kept vomiting all night. Called the doctor in the morning and he put me back on pain meds and said to watch it and go back on liquids all day. I did and felt much better, though I did sleep most of the day.
07/12/99 - I felt better today. Still tired and draggy feeling though. Felt strange about 9:30PM and took my temp. I was running a fever of 100.7. Took some Tylenol and went to sleep.
07/13/99 - Temp was back to normal this morning, but I will keep an eye on it and call the Oncologist if it starts to go up again. I am really hoping to have a week without a visit to his office. Crossing fingers, eyes and toes that this is such a week. Temp went back up again to 100.7. Called the Oncologist on duty and I will go in for blood work in the morning to see what is going on.
07/14/99 - Definitely not the week for no doctor's appointments. Had some blood work done again. In the examination my oncologist thinks the pain and the vomiting was from a gall bladder attack. So we have an ultrasound scheduled for tomorrow morning.
07/15/99 - First time I have ever had an ultrasound, very interesting procedure. I asked the tech if it were a boy or a girl and she laughed so hard she had to stop and wipe the tears from her eyes. That was nice. Seems I do have have gall stones and of course they want to remove my gall bladder as soon as possible. We have to work all this scheduling around the chemo for minimal interruption. The good news in all this is that it is not cancer related. Just old-fashioned gall stones. When I told my son, he asked me if the manufacturer's warranty on me had run out recently. Very funny...but I sure hope not.
07/23/99 - Today I had my gallbladder out. The surgery for this has sure come a long way. They did the surgery laparoscopically. That is, three little incisions and one incision about an inch long to remove the gallbladder. the surgeon said it was a "very angry" gallbladder and I should have had it out 7-9 years ago. Heck, I didn't know I was having trouble with it 7-9 weeks ago, but of course hindsight is 20-20 and now I can see what I thought was something else was my gallbladder all along. I had the surgeon save me some of the stones so I could see them. He said it was like holding a bag of marbles in his hand there were so many. But now it is gone and the healing continues. The surgeon also said that many times one surgery will trigger existing problems and this was no way related to the cancer. Wonderful news! My chemo was postponed only a week, so I start round two on August 2nd.
08/02/99 - I started my second round of chemo today. Really didn't want to start it again, but now that I have I am okay with it. Talk about aversion therapy! The Oncologist reduced my dose by 10% hoping to avoid some of the side effects I had the first round...especially the mouth sores. I don't think there is too much anyone can do about the hair loss right now. Oh well, can we say a buzz is comfortable in summer time?!!
08/09/99 - Well my second of chemo is done and it was so much better with the second round than the first. The reduced dose really helped with the queasiness. Nothing will save the hair now, but I am told by a couple of doctors that it will grow back in and should come in curly. I am all for that...as long as I don't look like Little Orphan Annie! My main concern right now is that I don't want those mouth sores again, so I am watching that very closely. But so far, so good.
08/13/99 - I found out something very interesting today. I had to get copies of my records for my insurance company. When the surgeon was doing the resection, he also removed my appendix. I thought that had been done in 1976 when I had other surgery. The report said it was "very, very long". I can just see what would have happened if he hadn't removed it then...a few more months down the road and I would be having yet another surgery. Hope this is the last of the surgeries. Geez, I am losing body parts faster than I can count them! Funny, but he never mentioned that he had removed it.
08/16/99 - It has been over a week since the last round of chemo and no mouth sores. I am so thankful for that. I had some blood work done last Friday and my white blood count was back up in the normal range. It was very low on the last test. Seems taking that gallbladder out really helped a lot. The only problem I am having right now is diarrhea, and I think I have it under control now. At least I sure hope so. I went out tonight to get some ice cream for everyone and as I pulled up at the store I realized I had forgotten my scarf. I was a bit nervous about going into the store bald, but other than a few quick looks everything was good. I got my words tangled up as I placed the order and a little girl of about 8 looked at me and said her neighbor always mixes up the names of her children. She didn't seem to notice or care about my lack of hair and then I felt comfortable. At least I don't scare small children!
08/27/99 - Had blood work done today. I feel good but still tire easily and my white blood count and the size of my red blood cells are low. I will see what the Oncologist says about that on Monday.
08/30/99 - The Oncologist did not like my low counts from Friday so he ordered another CBC (Complete Blood Count). It was up in the normal range today thankfully. If it had still been low, he would have postponed the chemo for a week. I want this done and over with, sure don't like the postponing idea. I had a case of "anticipatory nausea" all week. That is, I felt very sick to my stomach as soon as I walked into the oncology center. I told a friend about it and she said I had a bad case of the "psychobarfs"! I love that expression. It tells it all.
09/08/99 - Well I am now halfway through my chemotherapy! Hooray! The diarrhea was right on schedule...two days after the last treatment. Hopefully it won't last too long. I have keep from getting dehydrated so I have to drink lots of fluids. Eating of course just fuels the diarrhea. Sometimes I think it would be more efficient and lots less taxing on me to just take the food and flush it without eating it! Save the wear and tear on me.
10/08/99 - I finished my fourth round of chemo last Friday, Oct.1st (my birthday). I am still having the diarrhea problem and I am tired of scoping out where the restrooms are every time I go someplace. But it could be worse. So I will be thankful for that. My hair is beginning to grow back but at the same time it is still falling out, but at a much slower rate. It seems strange to me that it would grow and fall out at the same time. It is getting so hard mentally to go to chemo. When I am driving and I get to the street where I turn for the cancer center, (even if I am going somewhere else) my stomach tightens into a knot and I feel nauseous...psychobarfs again! I don't know how some people can manage going for a year. I wonder if I could do that, and I am thankful I don't have to know the answer.
12/11/99 - I did not post after my fifth round of chemo because I was having trouble with my vision. Things were very much out of focus much of the time. It was difficult focusing to read or work on the computer or to drive. So I did a minimum of those things and avoided driving at night. I could tell my depth perception was way off too. I asked my Oncologist about this and he said to do nothing about having an eye check because it would clear up on its own. It is much better now thankfully. The diarrhea has not been as severe as it had been in the previous rounds...and that has been a great blessing.
On December 3rd I finished my sixth and FINAL round of chemo. Can we say HURRAY!!! I still have the fatigue and a little trouble with my vision. Now I will work on getting my strength and health back.
The routine for follow-up will be for blood work every three months for a year, then every six months for a year and then yearly until year five; then I will be declared cancer free. I will have a colonoscopy every three to five years for life as a routine follow-up.
03/17/2000 - Everything is A-OK! It will take awhile until all the side effects are done and my energy is back where it used to be, but I am on my way. It is great to say that.
06/20/2000 - Six months since chemo...oh, how time flies when you are having fun...and feeling good in the process. I wasn't really worried about the test results since they were so good three months ago. This time they were even better! My tumor marker was 1.0. Normal is 0.0 to 2.5.
09/19/2000 - I had my blood work done last week and for the first time they did not call me before my oncologist's visit with the results. I had to wait out the week to see the oncologist. I kept telling myself not to worry, the lab was just busy, but somehow you don't really believe that and somewhere inside you start to think that something isn't right. Thankfully, I was wrong and everything was good. My tumor marker was 0.9, that is the lowest yet! Normal is 0.0 to 5.0.
12/12/2000 - Good news again! Everything looks good and I am feeling "normal" again. This time I don't report back until June...a whole 6 months. I have to have my next colonoscopy sometime in the next 6 months. Not looking forward to that at all, but the prep is definitely worse than the test.
03/26/2001 - I had my annual Well Woman check-up today. Everything seems fine, though my blood pressure is up a bit. It seems to be higher than usual the last few visits, so my doctor wants to schedule more tests to keep an eye on that.
04/05/2001 - I had my colonoscopy today. I got to watch the whole thing on the screen. The scope is controlled by a hand controlled unit and the doctor looked like he was playing Nintendo. There is a polyp in my ascending colon near the cecum. This is right about where the appendix is/was. The original tumor was in the descending colon. The GI doctor said it is "highly doubtful" that it is cancer. The base was too large to remove during the colonoscopy but he took part of it and sent it for biopsy. Even though he says it is doubtful, I have to hear the report myself...it feels like waiting for the other shoe to drop.
04/09/2001 - I had a mammogram today and an echocardiogram of my heart to check on the high blood pressure readings. That is such an interesting test...I was fascinated watching it.
04/12/2001 - Got the results of my tests tonight while I was at a restaurant.
My mammogram was good. The echocardiogram shows "some enlargement of the heart which is secondary to hypertension". So back to the doctor to see what's up with that (high blood pressure - up with that...never mind, bad joke).
10/15/2001 - Catch up time now. After a fight with the insurance company to approve me for the expensive genetic testing and a 5 week wait for the results...it is NEGATIVE! That is such great news. I had a follow-up appointment with my oncologist last week and all my blood work came back good. Not sure how much I trust that though since my blood work has always been good and my CEA levels low (1.1 this time). But we will watch it very closely. At least no more colonoscopies any more...not enough colon to scope! Next follow-up appointments with my oncologist and surgeon are in January. They seem confident that the second cancer was not a pattern but rather an anomaly, just an unusual thing. Hope they are right this time.
06/23/2002 - I had my one year check up with a flexible sigmoidoscopy. Since I only have 8 to 10 inches of sigmoid colon left, I can't do a colonoscopy anymore. And this time it was NEGATIVE...no polyps, no cancer. It is amazing that you realize you are almost holding your breath waiting while they do the test. When you hear, "OK, it is clear. Nothing there." You just want to cry with relief. Such wonderful words. These are tests I really like failing!!!
11/12/2003 - ALL CLEAR! What wonderful words! ALL CLEAR! That is what my GI doctor told me today after my follow up scope. I don't have to go back now for three years. Three years, can you believe that! Just fantastic!
04/04/05 - I have absolutely nothing to report. Now I know that may sound boring to most people, but, in my case, I think it is about the best thing I can possibily say about my journey. I have my next screening in 2006. All my blood work is good right now and I am almost - almost - looking forward to the next sigmoidoscopy just to verify that I am indeed in remission. Five years seems to be the time period to be able to use the magic, wonderful word "remission".
04/17/05 - Still a year to go until my next cancer checkup but now other things are happening. In the past two years I have begun have problems with my autoimmune system. While I can't say it is related in any way to the chemo, I wonder.
08/14/06 - I had my follow-up sigmoidoscopy and it is ALL CLEAR! Wow, I really love those words. My next sigmoidoscopy is in five years. But all is well.
The side effects I have been having so much trouble with are almost gone. Just a matter of time. Now I have a couple new ones
I was so glad that I had no trouble with my nails during chemo; now I am. They are brittle and ridged, and even have white marks on them. Chemo lines I was told is what they are. They are also separating from the nail bed as they grow out. That makes them tender to the touch. As they continue to grow out, and they are growing sooo slowly, that will stop happening and they will be fine. Another six months and I should have nice nails again. That is good news.
More testing again in another three months. Stay tuned.
I feel better, my energy is pretty close to pre-surgery levels now and my temperature regulation is getting back to normal. But let me tell you, cooler weather never felt so good! My nails still aren't as nice as they used to be but I think they are getting stronger and the chemo lines have grown out. My hair came back in a good bit curlier than it used to be and now the curl is straightening out and it is just kind of wavy. It is thicker too I think. I have also heard that sometimes it will grow back in a different color. And mine did...Gray! Yuck! Miss Clairol is now on my best friends list!
Back in December for my last of the 3 month check-ups. I will graduate to 6 month check-ups at that time. It is almost a year now since end of chemo. See you in Decemember.
The worst joke of all is that the polyp was cancer. I see the surgeon on 04/18/01 to talk about the surgery. It is scheduled for 04/27/01.
I do NOT want to go through chemo again, but I will be the first one in the door if that is what I need to do. Fight? Oh yes I will. And I WILL be fine.
04/27/2001 - And surgery again. This time the surgeon removed all but the sigmoid colon (about 8 to 10 inches of the large intestine closest to the anus).
The cancer was located at the cecum near where my appendix used to be. It was a T1, M0, N0 lesion. Which means that it did not go through the wall of the colon and had not spread. This is VERY good news. Leaving such a small section of large intestine means that bowel function and habits will be very different for the rest of my life. But I did not have to have an ostomy, so that is a blessing. The surgeon talked about the possibility of my carrying a
genetic mistake that would increase my chances of colorectal, and other, cancers. If this is positive, then my children and siblings each have a 50% chance of having this same gene defect. The genetic testing they did was for HNPCC or Hereditary Non-Polyposis Colon Cancer Syndrome, also known as Lynch's Syndrome. If you would like more information on this, please email me at the address on the home page or type HNPCC in your browser's search area.
Oh, did I mention NO CHEMO this time?
It has been awhile since I have updated my journal. Today I have been reading back over some of my entries and reliving the last four and a half years. So much has happened that has changed my life forever! I never thought there could be a positive to having cancer but there have been many. Many new friends I have met, many new things I have learned about myself and many new ways I have learned to understand others.
I know this journal has helped me and others have told me that it has helped them. And that makes the last four and half years worthwhile.
I know now that it really isn't all about me, it is about all of us helping and supporting each other. That is how it should be.
Meanwhile, life is good and I am thankful for each and every day of it.
Colon cancer has one of the best cure rates when caught early. Please don't put off getting checked because it sounds gross. Believe me, colon cancer is worse.
Some of the autoimmune health issues I am dealing with now are: Sjogren's Syndrome and Raynaud's Phenomenon. Along with Inflammatory Osteoarthritis w/tenosynovitis, Degenerative Disc Disease, High Blood Pressure, Osteoporosis, Scoliosis, Rosacea and year round Seasonal Allergies. Only the Rosacea, Scoliosis and allergies are pre-chemo. I have entered some information on Sjogren's and Raynaud's on the Glossary page if you wish to learn more about those.
More later...
Many thanks for all those I know have been praying for me and sending healing thoughts my way. I know they have surely helped. Knowing people care is an amazing thing.
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