TIPHANIE WIEBE

TIPHANIE’S COLONDAR BIO

Tiphanie Wiebe knows that sometimes you just have to have faith. Little did she realize just how important it is.

Tiphanie had been in pain for months before she was finally given an ultrasound and surgery, which diagnosed stage II colon cancer. It was just months after her wedding and a few weeks after her 20th birthday. She stopped chemotherapy after she became horribly sick, and felt at peace with that decision after a healing service was held for her with family and church members. Tiphanie continues meticulous screening because she carries the gene for hereditary nonpolyposis colorectal cancer (HNPCC).

Tiphanie credits her faith in God for seeing her through her diagnosis and into her healing. Now she believes in miracles too.

TIPHANIE’S STORY AS TOLD BY TIPHANIE:

I got married in July of 2004, and up until then I hadn’t had any symptoms. But shortly after, probably in August, I started having stomach pains that kind of came and went, but I didn’t think much of it. I just thought it was all the changes in my life – getting married and moving. In September, I also started having spells where for a week I would throw up and wouldn’t be able to eat anything. That’s when I started going to the doctor.  They thought it was the stomach flu and said it should go away. It did go away for a while, but the pain never did.

The pain kept getting worse and I went back to the doctor several times. They said it was IBS (Irritable Bowel Syndrome) and that I’d have to learn to live with it.  I’d have to change my diet and eat more fiber. Even though it never really crossed my mind that it could be colon cancer, I told them that I had a family history.  But they said that I was too young, and didn’t need to worry about that. They still said it was IBS, and this went on for three months. I actually ended up switching doctors when I moved, and found a really good doctor who normally doesn’t take new patients, but took me because my husband was already a patient. By then, every day I was in incredible pain, throwing up and having diarrhea.

In November, we knew something was seriously wrong and that it had to be more than IBS. My mom actually wrote a letter to my doctor saying that I needed help immediately and we needed to figure out what was really going on. We delivered the letter to my doctor and he admitted me to the hospital right then and there.  That night I went in and I needed something for the pain and they gave me Tylenol. I actually laughed, but took it and then threw it up. They gave me morphine next and I could actually sleep that night, which I hadn’t done in a while. The next day they stared testing.  First it was an ultrasound. I found out later that they found the tumor during the ultrasound, but they didn’t tell me. Then they brought me in for a CT scan and told me that it looked like an internal hernia. They said that I would have surgery and then they would know more, but didn’t tell me what they already knew.

Now I’m glad I didn’t know until after surgery, because I would have been a lot more worried. They said that they didn’t tell me or my family because they wanted to see what was going on before they said anything. They already thought it was a tumor, but it was so rare that they wanted to see what was really going on and didn’t want us to worry if there was nothing to worry about.

Doctors said they would try to do my surgery laparoscopically, but the surgeon found a mass and did have to open me up completely. Surgery went very well. The tumor was in the ascending colon, so he took the whole ascending colon out – about 1/3 of my colon. He told us that night when I was waking up from the drugs that they did find a tumor and took it out along with a bunch of lymph nodes. He said that because of the size and how it looked, he thought that it would be cancer, but they would send it away to know for sure. I was in the hospital ten days and I remember that even the night after my surgery I didn’t have any pain. The pain I’d had for so long was finally gone.

After surgery, I found out that my tumor had gotten so large that it caused a total blockage and that is why I couldn’t eat or drink anything. Then, because your colon naturally pushes food along, mine kept trying to push the tumor along and eventually caused an intussusception, which is when your colon sucks into itself. Because my tumor was in the ascending colon, the whole ascending colon was pulled into the transverse colon. It is kind of rare, but it was actually a blessing in disguise because that’s what caused the pain and made me know that something was wrong.

I recovered very well after surgery and didn’t have to take any painkillers. I came home from the hospital on December 3rd and my husband and family had decorated the whole house for Christmas, so that was fun. I took it easy for a while. It took a few weeks for the pathology to come back and it was stage II colon cancer. They had taken 104 lymph nodes and all were negative – no evidence of any spread. I was referred to an oncologist and saw him at the end of January. He told me that if I had been older we wouldn’t have done chemo, but for a lot of reasons they wanted me to do it – because I was so young (I was 20), because the tumor looked aggressive under the microscope, and because of my family history.

I was supposed to go on Xeloda, an oral form of chemo, and there weren’t supposed to be many side effects. I wasn’t going to lose my hair, and I could probably go back to work. I started that in February, a two-week cycle, and I was on the maximum dose. After eight days, I was feeling totally fine and it was all going great. Then I started getting a rash and I didn’t think it was that big of a deal, but showed it to my doctor.  He had me take a few days off the chemo. As soon as I went back on, I got really sick, threw up, had diarrhea, and a fever. I was admitted to the hospital because I was so sick and losing so much weight.  By then I had lost about 40 pounds. I had to go into isolation because I had no white blood cells left, and they were giving me shots for the diarrhea but nothing worked. I spent half the day sleeping and half the day being sick.

My dad did a lot of research on the internet and he found Neupogen, so we asked about it. It stimulates your bone marrow to raise your white blood cell count. The doctor said it was very expensive and wouldn’t be covered by Medicare, but at that point we would have tried anything, no matter how much it cost. Luckily, my private insurance paid for it. Every day that I was on Neupogen, my white blood cell count would double and actually went too high. I was in the hospital for about two weeks that time.  When I finally went home, my doctor wanted me to try another form of chemo but I was unsure about what I should do since the tumor was already gone.  I didn’t have any cancer left in me. I wondered if it was really worth going through all the chemo.

I had an anointing service where the pastor from my church came over along with my family. I was anointed with oil and we prayed about the situation, for healing and to try to find some direction. Not long after that, I felt that I would give the second form of chemo a try. They were going to give me the mildest dose of 5FU with a pump so that it would be administered over a few days, making it easier to tolerate. I never felt at ease about trying the second chemo, but I thought that I was just dreading it so much and should just suck it up and do it.

Before I started the 5FU, I was tested for an enzyme deficiency, which would mean that my body was lacking an enzyme that breaks down the chemo and it would just build up in my system. This could have been the reason why I reacted so badly to it the first time. That test took a while for any results, and they were hesitant to do it because it’s very expensive.  The blood taken for the test also had to be sent to the United States , but I before I would do any other chemo, I wanted to be tested. I wasn’t going through another chemo if my body couldn’t tolerate it. The test came back negative – I wasn’t deficient. For some reason, my body just didn’t break down the chemo the first time. A person who is totally deficient in the DPD enzyme can die from chemo, so we decided I was partially deficient.

My doctor wanted to try the 5FU anyway, and said that if I wanted to stop any time, I could. I started the second chemo in May, already a few months after the Xeloda, and the same thing happened. I was supposed to have six-months of chemo again, and the first three cycles I felt good and was excited. But right before the fourth cycle my blood cell count went down and chemo was delayed. I stayed on the Neupogen, which was a daily shot that my husband learned to give me, and got my cell count up, but I started to get really sick again. I had to go into the hospital for a few hours every day to get fluids through IV because I couldn’t even keep water down. I also had severe mouth sores, so swallowing hurt very badly. After that, I told the doctor that was it. No more chemo. The second time I was ever sicker than the first, and it took me longer to recover. It was two months until I could eat or walk normally, and carry out normal activities. The chemo just totally wiped me out.

My oncologist once recommended removing my whole colon, but I thought that was a little bit drastic. I said, “How about I have a colonoscopy every year and if there are lots of polyps we’ll take it out.  But if not, then we don’t have to.” He agreed. Throughout the cancer I had never had a colonoscopy because they found the tumor with the ultrasound and CT scan. I’ve only had one colonoscopy so far, about a year after my surgery, and I didn’t have any polyps, so that was pretty exciting. My next colonoscopy is coming up in October 2006. My mom, sister, and I are all going on the same day, my birthday actually. I also have check-ups every three months and a CT scan every six months.

Through studying my family history and doing some testing, they discovered that I have the HNPCC (Hereditary Non-Polyposis Colorectal Cancer) gene. There are five different versions, but right now they can only test for two. I have the MLH1 gene, carried on my mom’s side of the family. People who carry the gene have a highly increased rate of cancer, mainly colorectal. My grandma had colon cancer, and so did my uncle. My mom and I were tested at the same time, and weren’t surprised to find that we both have the gene. My brother and sister were also tested. My brother doesn’t have it, but my sister does. If you carry the gene there is a 50/50 chance that you will pass it on to your child. We chose to be tested to be sure so that we could properly follow the screening guidelines. It’s recommended for people who have the gene to get a colonoscopy every year. It also increases your chances of ovarian and uterine cancer, which my grandma also had. I get checked for that as well by having an ultrasound. My doctor says that when I’m done having children, it’s recommended that I have a complete hysterectomy. My mom is totally healthy, but just had a complete hysterectomy for that reason.

I would say that something that’s been really important to me through all of this is my faith in Jesus Christ. My faith and my family got me through all of this, and so did the encouragement of others who have gone through and dealt with similar things.

I can honestly say that I never felt “this isn’t fair” and that I didn’t feel like I was too young for cancer. Cancer can affect anyone. You don’t have to be a certain age. I was 19 when I started getting sick, and I had surgery right after I turned 20. Obviously when you are young and you get married, that’s not what you expect. You don’t expect it to start with sickness. In a way, it makes you strong because if you can get through it, you have a pretty good start to whatever comes next. When I would see other young couples who had just gotten married, I didn’t envy them, but I wondered what a normal young marriage would be like. That’s what I can have now that I’m healthy again. It’s kind of like starting all over.  Me being sick was very hard on my husband, but he was always there for me, taking care of me.

I’m from a small town, and I chose to stay here for treatment because this is where my doctor is, but I could have gone to Winnipeg where there is a much larger cancer care facility.  I was probably the only person under 60 who was even getting chemo in my town, and I did wish that I had someone else closer to my age. Every time I walked in, they would say, “Oh, you’re too young to be here.” Because it was rare, all the doctors knew my story and who I was – “that girl with colon cancer.” When I was in the hospital, the nurses all wanted to be my nurse. It was something interesting and new for them. I was definitely a rare case, that’s for sure. The lady who did my ultrasound and found the tumor actually ended up writing a report on it all. She came into my surgery and took pictures, and the report is going to be published in a medical journal. She won an award for it, so I guess it was kind of interesting.

I wouldn’t say that I was treated like a freak or weird. People were really understanding for the most part, and wanted to help in any way they could. But if you haven’t been in the situation, you don’t know how to help or what to say to someone. Before this happened to me, I would never have known what to say or what to do. I didn’t expect that other people would have all the right things to say, because I wouldn’t have. I did wish that I had someone else younger who I could turn to. Even a lot of people from my church who were really there for me who had gone through cancer themselves, they were in their 30’s or 40’s. They weren’t old, but there still wasn’t anyone my age. Those people were still a huge encouragement to me though. At the very end of my chemo, I met a girl in her mid-20s, but she didn’t have colon cancer. The oncology unit at my hospital is so small that anyone with any type of cancer is together. She had lymphoma, and that wasn’t rare for her age, but at least there was another young person there that I could relate too, and my husband could relate to her husband.

My doctors did discuss fertility issues with me. There’s no way to guarantee, but they don’t think I was affected. That’s way in the future anyway, so I’ll think about that then. I was against the book on everything – everything that was supposed to happen – my body did the opposite. I wasn’t supposed to have much trouble with the chemo, but I did. I wasn’t supposed to lose my hair, but then it all fell out.

I can’t say for sure the exact reason why cancer happened to me, but I do think things happen for a reason. God has a plan for our lives. Cancer taught me to give control over to God and trust in Him completely. I don’t know what lies ahead for me. None of us do. But we have to take what comes and deal with it. I hope that I can help others through my experience, other people who will in the future go through the same thing. It’s also a good possibility that there could be others in my family who will go through it. I am definitely a lot more educated now, about how I can help them. By trusting in God while dealing with cancer, I received a lot of peace and I felt like the Holy Spirit was carrying me through the situation.

I also believe very strongly in natural medicine to treat the cause of the disease rather than the symptoms. I went to see a naturopath around the time that I went to my oncologist for the first time, because I wanted to incorporate the two. My oncologist was totally against it, so the first time when I went on the Xeloda, I didn’t go on anything natural with it. The second time though, I did. I think that’s why I felt better, longer and I used a lot of natural medicine to help heal and recover. I still do. I believe in that, and that what you eat can really make a difference – not totally, but it can help.

Something that’s also really important is to know your body. If you know that something isn’t right, you need to do whatever it takes to get help and find the problem. I don’t blame any doctors at all and have nothing against them. I really appreciate my doctors, but they can make mistakes and don’t know everything. They can’t know everything. You have to know your body, do your own research, and do whatever you can from your part, too, not just do whatever they say.