Mom went to see the surgeon on Monday. He gave her a referral to see a stoma nurse therapist at a stoma clinic at the Brigham and Women's Hospital. She spoke with the stoma nurse therapist and the conversation seeemd promising. I hope they will be able to make this colostomy bag a little more bearable for Mom. She seems so debilitated by it. Rightfully so....if I have a hole in my abdomen.......and it burned all the time I think I would be annoyed. She is taking th T all by herself to see the stoma nurse therapist. That will be the farthest she has gone on her own outside of the house since all of this happened. Her surgeon said that he wanted my mom to have the bag until her chemotherapy was over. We'll see....I am hopeful that this nurse therapist will make a difference.....it's all they do.....so they should have a clue.

I did the Walk for Research with some friends the other day. I already mentioned that it rained. The walk itself made about $70,000 for liver reserach, education, and advocacy. I got sick ten years ago this summer. I have been healthy for the last nine years and for that I am thankful. On Sunday they were going around the group asking people to share their stories. My friends jokingly told me to share my story. I did not jump forward because my story is not as exciting as others. I have been healthy for years....I did no need a transplant after all...and for the most part i have been out of the whole liver circuit. Although one of those friends did point out that my being healthy was a significant thing and that I was a success story...which is all true. I am thankful to be healthy.....I plan on living a long life..........

Mom had her first chemotherapy treatment on Friday. She said the people were nice....and she was there for two hours. She is feeling ok today....as far as I know. Supposedly she probably won't feel sick for a few treatments. She was having a hard time with the colostomy bag this weekend and the stoma. She has an appointment to see the surgeon today. I really hope that they decide to put her colon back together sooner rather then later. She seems to be really debilitated by the bag and stoma etc. I hope the surgeon tells her what she wants to hear today.

We did the Walk for Research yesterday. It rained...and two people on my team didn't make it because they were sick. BUT still...our team made abot $725.00 for liver reserach. Yee haw...go team!

My mom has been having trouble with her stoma lately. It appears that the stitches may have broken after surgery...causing it to not heal correctly. Now it is swolen and red and bloddy and raw. The surgeon says he isn't going to do anything to it because it is not permanent. In the meantime my mother has to deal with constant discomfort. Not to mention that the surgeon hasn't even looked at the stoma since the surgery. My mom seems to be having such a hard time with the colostomy bag and the stoma. I would be too. She seems down. I would be too. I wish things could be easier.

Mom went to see the oncologist today. She will start her chemotherapy next week. The doctor said there is a chance that she could lose some of her hair. Looks like she will be getting chemo for at least six months. They said they might explore the option of putting her back together somewhere in the middle of her getting chemo. She is going to have another colonoscopy and cat (sp?) scan at some point. I'm scheduled to take her to one of her chemo sessions in July.

Mom went to see the surgeon yesterday. They confirmed that she in fact has stage three cancer. The surgeon said that the oncologist might opt to have mom put back together before having chemotherapy....but she could also say that she should wait until the chemo is done. We will know more on Thursday when she sees the oncologist. I hate not knowing what to expect. Everything in life is uncertain......I hate that. I hope all of this will work. You think they would have some way of killing just the cancer. Unfortunately they cannot figure that out and will need to kill a bunch of healthy cells in the meantime.

My mother got out of the hospital a week ago today. A week ago yesterday she was vomitting bile and showed signs of thrush from the antibiotics. She seems to be doing ok at home these days. She has been getting out a bit and trying to do the things she did before she got sick...i.e. clean the house......cook dinner....talk with her friends. She is trying to rest and get strong for her chemotherapy. She has been having some issues with her stoma. I hope those issues resolve themselves.

I spoke with a close family friend last night.........someone I have known all my life. It is good to know I have so much support.

Yesterday I did a search in Google under the terms "etiology and colon cancer" and I got a link to this blog...it was kinda crazy. Then I did a search using the terms "etiology and autoimmune hepatitis." Of course I did not get this blog. In fact I didn't get much at all. It is amazing how little information there is in the world/on the web about autoimmune hepatitis. There are websites on liver disease that mention autoimmune hepatitis....webpages on lupus...and Crohn's disease...but not much dedicated specifically to autoimmune hepatitis. I find it frustrating. Fortunately there seems to be quite a bit out there about Colorectal Cancer. The unfortunate consequence of this is that a lot of the information out there is scary. And reading it without the interpretation of a physician is overwhelming.

I just realized I have been rambling about the lack of information on the web about my illness. I just have to say that I am librarian by training and that most of the medical information on the web would probably kill you. Always make sure what you read on the web is credible.

I had dinner with some close friends last night. We also got frozen drinks to celebrate the 50th anniversary of the climbing of Mt. Everest. I got a virgin strawberry daiquiri of course. It was the first time I have really done anything social since my mom got sick. It was nice to see them. Now that we know we are in this for the long haul I have been trying to get back into the swing of things slowly. I emailed my book group.......I contacted my Walk for Research team etc., etc.

Ok back to my mom. She is having her stitches out today. She is also meeting with the Stoma nurse. I hope it goes well.

My mother just called me. It appears she won't be meeting with the oncologist until the middle of June. They said she will need to heal a bit before starting the chemo. I went over to my parents' house after work yesterday. Everyone...my mother....stepfather......my partner and myself are all experiencing normal feelings. It's all very sad really. Mom said we should go ahead and reschedule our vacation plans. It seems she will have chemo for a few months...then they will reconnect her. My fear is that we will schedule to go away and something bad will happen while we are away. I wish this never happened......but we are here now. Being sick is awful...it's such a fight.

The name of this blog is etiology. Merriam Webster's online dictionary defines etiology as "CAUSE, ORIGIN; specifically : all of the causes of a disease or abnormal condition." When I first presented signs of liver failure 10 tens years ago they kept telling me that I had "liver failure of unclear etiology." Hmmm....what does this mean? WE HAVE NO CLUE WHY YOU ARE SICK! I know the medical community is working hard to rid the world of disease.....but it is really scary how far behind medical science really is. The goal of this blog is to act as an outlet for all that is going on in my life. However I also have many medical links listed on this page. My ultimate goal would be for this blog to be of some use for someone else. I hope that in the future no one will have to hear WE HAVE NO CLUE WHY YOU ARE SICK!.....or "...of unclear etiology."

My mom just called me at work. It appears that the growth they removed from her colon is in fact cancer. 13 out of the 14 lymph nodes they looked at were clear....however one of them did have cancer. So it looks like she will need to have chemotherapy. As far as when this will start.....for how long ....and when the surgery to put her back together again will be.........I have no idea. I'm feeling sad and scared for her. I was praying that the lymph nodes would be clear. What she is about to endure is scary and exhausting........I only hope it will be successful.

The following is a posting from another blog I was writing before I started this one. The blog was posted on May 20, 2003


My life has been turned upside down. My mother spent all day Saturday in the emergency room and was finally admitted to the hospital that night. On Sunday afternoon at around 3:30 p.m. they told her they thought she had colon cancer. At 5:30 p.m. she was in surgery to remove the growth. I went to the hospital yesterday afternoon and spent a few hours with my mom. She was on lots of morphine and was feeling really uncomfortable. I brushed her hair and helped her get out of the bed into a chair and helped her brush her teeth. I was a mess when I left. I had all these feelings about how she had taken care of me...and now she was sick....and I don't know what I would do without her etc., etc. I'm still a mess today...but I'm trying to get through the day.

My mother got out of the hospital on Sunday. She had been there for a week. While she was there they removed a growth in her colon..which they believe is cancer. We are still waiting for the pathology report