Wednesday, December 31, 2003

President Lincoln signed an act admitting West Virginia to the Union, on this day in 1862.

Thomas Edison first publicly demonstrated his electric incandescent light in Menlo Park, NJ, on this day in 1879.

President Truman officially proclaimed the end of hostilities in World War II, on this day in 1946.

Source: New York Times

Happy New Year!
As you know I went to see the podiatrist yesterday. I bought the Spenco Orthotic Arch Supports he recommended at Shore Drug on Belmont Street. "Spenco".....doesn't it sound like "Panko"........the Japanese Bread Crumbs? After work I went to check out Michelson's Shoes in Lexington. The doctor insisted that they sold shoes I would wear. I took a trip there after work yesterday...and he was correct. The people there were very nice and helpful. I told them I would be back to buy some shoes at some point toward the end of the week. I think it's going to be an expensive trip to the shoe store. YIKES!

I arrived early for my podiatrist appointment yesterday. I decided to stop in at the Brigham's Ice Cream across the street from my doctor's office. I got a bagel and a small decaf coffee. As I consumed my yummy bagel I took a look around the room. I hadn't been at a Brigham's since I went with my friend Joanie a few months ago. I grew up with Brigham's, but hadn't thought too much about it in years. My friend Mary P. and I used to eat at a Brigham's on Massachusetts Ave a few years ago. That restaurant closed a few years ago and is now a Boston Market. I remember eating at that same Brigham's before going to a BSO concert with ym 8th grade class. Cynthia and I went to a Brigham's two years ago the day after Christmas. As I looked around the room yesterday I decided that I like Brigham's. It's the kind of place that makes you smile. It has lots of ice cream flavors...and colored sprinkles..and a gumball machine....and ribbon candy....and licorice. I should visit my local Brigham's more often.

I had a great time last night. We got together with my friend Elke at Diva in Davis Square for dinner. I was so happy to see Elke. She and I met at the "little park" near our house in Dorchester 15 years ago and have been friends ever since. Elke moved to Los Angeles a few years ago and I don't get to see her very often. I felt like such a loser friend however. I have know Elke for years...I know her mom..and step-dad.......and her sisters...and cousins...and aunts...and her Omi and Opa. I know all about her asthma..and her allergies to nuts..and dogs and cats. Well silly me went off and bought her a box of Knipschildt chocolates for Christmas...totally forgetting about her nut allergy....and not even thinking about whether or not there were nuts in the chocolates. I felt terrible. She told me she liked the box..and the bag I put the chocolates in..and that she will enjoy "smelling" the box.

Tuesday, December 30, 2003

I just got back from my podiatrist's office. Looks like I do not need $300.00 orthotics. Yee haw. He told me to go out and buy some inserts for $25.00. I am to go back to him next week and he will manipulate them to the shape of my foot. I hope I bought the right size of insert. It's sometimes difficult for me to buy shoes and the like. I learned today that all of my shoes...except my hiking shoes...are either too big....too small....or have worn too much. I bought my hiking shoes at a store my friend Carlos was working at a few years ago. So.......thanks to Carlos.....even though I have no idea what he is doing with his life right now. Last I heard he had moved back to Puerto Rico. Ok so back to my feet. In addition to buying inserts and new shoes....I will also be seeing my trusty physical therapist Jen a couple of times to work on a stretching program at home. And she thought she was rid of me..............

Monday, December 29, 2003

The tape on my foot didn't seem to make much of a difference. I was happy to take it off on Saturday morning. I'm off to see the Podiatrist again tomorrow. My Christmas was nice. I found out that Mom's last chemo appointment will take place on Friday, February 6, 2003. Finally...the end is near. Mom will finally get to ring the chemo bell. Mom is seeing her surgeon soon. He will determine when she will be put back together.

Monday, December 22, 2003

I went to the podiatrist this morning. I do not have toenail fungus. Yee Haw! The doctor said baby toenails just grow that way. What he did say is that I have inflamed ligaments in my ankle and that I need some more support. The doctor made a splint and I am to wear it for five days. No getting it wet....swimming or walking without shoes and socks. This rules out the trip I was going to take to the steam room this evening. The doctor agreed that wearing the brace for my broken tibial plateau has caused some problems.....and now I'm not getting better as quickly as I could because of my ankle issues. I'm sort of sad about the whole thing. I feel like I am never going to be back to normal.

Saw Degrassi last night. Yup...Joey and Caitlyn finally got back together. It has been almost a decade for those two. Ashley found out that Craig found out that was cheating.

Wednesday, December 17, 2003

I just found out that Margaret Cho has a blog...........this is definately worth a glance....she is WAY funny. "it's so cold".....ha, ha, ha....she kills me.

We are having our holiday party at work tonight. We are having it at Vinny T's...formerly know as Vinny Testa's. Vinny T's is know for their large portion sizes...........affordable prices and possibility of winning your meal for free. I am looking forward to it....I think it will be yummy.

I was thinking about last years holiday party at work. It was there that I tasted caviar for the first time. I don't remember loving it. I also do not think they will be serving that tonight.

Another first......
Orville and Wilbur Wright made the first successful flight of a self-propelled, heavier-than-air aircraft near Kitty Hawk, North Carolina, on this day in 1903.

Tuesday, December 16, 2003

I finally talked to someone at the Ride today. I was calling to complain that I had been late for work twice last week because of the Ride. Twice last week they had either picked me up at least 20 minutes late......or had scheduled some crazy drop off/pick up....from Somerville to Cambridge.....to Allston....to Waltham. I spoke with someone today....but I have no faith that anything is gong to be done about any of this. He was pretty much like..."yup...yup...wasn't that the day there were crazy road conditions?" I pointed out that that was not the case. Tonight.....they were supposed to pick me up 4:50 p.m. At 5:15 p.m. they still hadn't come. I called and they said it would be another 20 minutes before they could get to pick me up. Let me do the math for you......thats 40 minutes late! They did eventually show up...and yes........it was 40 minutes after the time they were supposed to pick me up. I'm really pissed off....but I'm feeling like there is nothing I can do. I hate not having control.
Partners in Health was featured on Chronicle last night. Did anyone see it? The story focused on the history of the organization, the people who founded it, and the work of Paul Farmer, MD. I mentioned a few months back that Tracy Kidder had written his most recent book (Mountains Beyond Mountains) about the work of Paul Farmer. If you have not read this book....I would suggest taking a look at it. Paul Farmer was my Resident when I was in the Hospital 10 years ago.
I went to my last physical therapy appointment for my broken tibial plateau this morning. My physical therapist and I realized that there wasn't much point to my coming in any longer. Most of the exercises I can do at home. So....I've graduated. Of course I am still very nervous about walking in the snow and ice.....and I do have pain every once in a while...but aside from that.....I'm ok.

I am going to see the podiatrist on Monday. I think I have toenail fungus.......yuk...gross. I am hoping he will look at my ankle and the rest of my foot as well. I have had some stiffness and pain in my foot and ankle since I broke my leg.

Ludwig van Beethoven was born in Bonn, Germany on this day in 1770.

The Boston Tea Party took place on this day in 1773

Monday, December 15, 2003

Alot has been going on. I have been a busy woman. Went to see Love Actually with Julie and Nicole on Friday night. I really liked the movie. I laughed...I cried. Saturday I went to a class at Simmons. That night we bought our Christmas tree. Yesterday I went to The Paulist Center. John Ardis, CSP read a letter from the Director of the Paulist Fathers about a priest living in residence at 5 Park Street who has admitted to having sexual relations with a minor. I should point out that this priest has never had charges filed against him.....and has been relieved of his ministerial duties for quite some time. Yesterday afternoon I was supposed to go to a Christmas Open House....but I was tired...and afraid of going out into the snow. So...I stayed in and wrote holiday cards. Last night we decorated our tree. I love Christmas. The lights........are so pretty...and the tree smells nice.....and I love listening to Christmas music...and being with friends.

Friday, December 12, 2003

So....I'm not working today. I am not working today...because I am working tomorrow. I'm attending a class at Simmons all day tomorrow. Today we went out for brunch....and did a plethera of laundry. We did a ton of it......but it always seems that there is more to do. We are currently reading...checking our email...and hanging out. I think we are going to go to Kenmore Square so we can get gifts for the respective young boys in our life. I think we are going to check out the souvenir store at Fenway park. We plan on eating a late lunch in the Fenway/Kenmore area.....then we are meeting up with Julie and Nicole to see Love Actually. I think it will be fun.

Mom had chemotherapy at 10:30 a.m. today. She had a chest scan yesterday. Mom said that it went well. She is waiting to get her results.

Thursday, December 11, 2003

I left a voicemail for someone at the Ride to complain about my recent lateness due to the Ride. I hope they will call me back. I hear the gentleman I left a message for is out sick today. I wonder if he is out sick every time someone calls to complain. I feel better knowing that I did something.

I had a wonderful dinner at my old bosses house last night. She made tasty soup. It was nice to see her and catch up. She is an amazing medical librarian and she turned me onto the Warrior Librarian website. Check it out...its definately worth a read.
ARGH....I was 35 minutes late for work today...and it was all the Ride's fault. First they picked me up 25 minutes late. When I got on the van there were three people on it. A woman and her son...and another guy. First we dropped the son off at school in Cambridge. Then the driver tells me that we have to drop the other guy off in Allston. He then went on to explain that he wasn't sure why they scheduled it this way...because Allston is out of the way. Tell me about it. So I said...."ok so we are going to Allston first....I need to be at work at 8:00 a.m." At this point it was 7:40 a.m. So....somewhere along the way we ended up on Commonwealth Avenue....up by BU. We dropped the woman off at the T. This woman and her son seem very nice......but I don't really understand them. I have never seen them pay. AND....we always bring the boy to school..and she either jumps out at a red light...and runs to catch a bus....or we drop her off near the T. I literally have seen her run for the bus. I'm not sure which one of them is the eligible Ride passenger. Not to mention that I'm not positive what the destination of their Ride is supposed to be......the school where the boy attends...or a random stop near the T. ARGH. OK...so we dropped the woman off on Commonwealth Ave. Then we took the other guy to where he was was going in Allston. We couldn't find a good place to park....and then the driver had to escort the passenger into the building. This was a slow process. At this point it was clear that the driver was very annoyed...and it was already 8:05 a.m. Eventually he got back into the van...used a few choice words under his breath and we were finally off to Waltham. I got to work late again. This is the second time I have been late this week because of the ride. Needless to say......I'm very pissed off.

Monday, December 08, 2003

Mom has a colonoscopy today. Her last meal was at 2:30 p.m. yesterday. I hope the results will be good.

Mom is also having another chest scan done on Thursday. She is having this done to compare it to another film that was taken of her chest. They want to check on the growth. It as taken this long for them to take another chest scan because they were waiting for pictures that were taken at Mt. Auburn Hospital to cpmare. The hospital never sent the pictures...even with more then one call. ARGH! The medical community isn't as quick as they should be.

I am in the office today. Jut got out of a meeting with our record storage facility. The snow was pretty bad this morning...but I took the Ride and I even got to work early.

I took a shower this morning. I love feeling clean. I used my new burts bees peppermint soap and my teaberry shampoo. I was tingly all over.

Sunday, December 07, 2003

We really got buried this weekend....in snow that is. It looks like we got two feet of snow in our neighborhood over the course of the past two days. I usually love snow. I love seeing it fall....I love being temporarily unable to go to work....and I love getting out there on my skis or snowshoes...I even like shoveling sometimes. However...with my recent broken leg.....my love of snow will probably be put away for the next few months. I am afraid of snow for the time being. I can't even help with the shoveling. I feel bad about this...I wish I could help. I have been in my apartment for 48 hours. I haven't taken a shower since Friday morning. I'm not sure what is going to happen tomorrow. I am supposed to take the Ride to work. At least they can get me there from door to door. My worst fear is of falling in the snow...and hurting myself again. The Ride was only transporting folks who needed dialysis today. I hope this won't be the case tomorrow. Maybe I will get lucky and they will cancel work tomorrow...then this won't be an issue.

This weekend I was supposed to go to the Souvenir Store at Fenway Park to get a gift for my young cousin....have breakfast with Meg.....meet up with Mary....stop off at my friend Maureen's for an Open House.....and the head over to Mike's for the MoveOn party. None of that happened. The weather was too messy to leave the apartment yesterday...Meg didn't make it to Boston....Maureen postponed her Open House....and I called Mike to say that I would not be there.

That being said.....I don't think that this weekend was a complete bust. Yesterday we had a nice time. We listened to the WERS Women in Music show........made yummy pancakes.......read our books......had a tasty dinner, and watched Christmas specials. Today I made a mold of my fist with a "Mold It" kit I got for Christmas last year. It doesn't look so good. It really looks like a blob of plaster. I also painted the creamer and sugar bowl Cyn and Stephanie got me for Christmas last year. They came out nice......I put people holding hands on the creamer, and different colored suns on the sugar bowl. I also finished reading some of the Sandman. I spent quite a bit of the weekend listening to the Nat King Cole Christmas album and consumed a lot of Burdick's hot chocolate....yum.

Friday, December 05, 2003

There is a new episode of Degrassi: Next Generation tonight at 8:00 p.m. For those who watched Degrassi Junior High and Degrassi High in their younger years...this is a must see. Spike, Caitlyn, Snake, and Joey are all back as adults. The following is a description of tonights episode found on The N website.

Whisper to a Scream
Ellie's under a lot of pressure. With her dad fighting overseas, she's and taking care of her mom, and between school and this an incredible internship opportunity with Caitlyn Ryan, Ellie doesn't know if she can handle everything. But her way of dealing is NOT going to solve her problems.

Allison Bechdel, the creator of Dykes to Watch Out For will be at New Words in Cambridge this Sunday (December 7th) at 3:00 p.m. Check it out. I think its going to be good.

Ever wondered what Burt of Burt's Bees really looks like? Now you can find out...he will be at Whole Foods Market on River Street in Cambridge on Sunday (December 7th). I believe he will be there from 12:00 p.m. - 4:00 p.m. Stop in. I love Burt's Bees products...I'm all about it.

On Sunday evening I am planning on going to a MoveOn party at my friend Mike's. He will be showing the documentary Uncovered: The Whole Truth About the Iraq War. I think it will be interesting. The following is a description of MoveOn from their website.

MoveOn is working to bring ordinary people back into politics. With a system that today revolves around big money and big media, most citizens are left out. When it becomes clear that our "representatives" don't represent the public, the foundations of democracy are in peril. MoveOn is a catalyst for a new kind of grassroots involvement, supporting busy but concerned citizens in finding their political voice. Our international network of more than 2,000,000 online activists is one of the most effective and responsive outlets for democratic participation available today.

Thursday, December 04, 2003

I took the Ride to work this morning. Of course they were a half hour late. Fortunately I still got to work on time. One of the Ride drivers told me about a rider who lost his job because the Ride always got him to work late.

I got an email from someone at the liver foundation yesterday. They are trying to assemble this years Walk for Research committee...and they asked if I wanted to help. I said yes. I have been healthy for so long...sometimes I feel disconnected from the liver disease community. This will enable me to stay connected and give back....which are both good things.

Wednesday, December 03, 2003

It's so cold in my office today...I feel like Bob Cratchit. Maybe this is my employer's attempt at getting us into the Christmas season. Mr. Scrooge would probably say it was warm in here. The problem...this isn't 19th century England...it's 21st century Waltham. The cold is good for the archival records...not their recordkeepers.

I went to my Mom's to hang out with her yesterday after work. It was nice to see her.

Mom was making yummy beef stew. At some point I noticed she was staring into the pot. I asked what was wrong. She seemed concerned that there was a hair in the stew. After some inspection we realized that it was in fact not hair, but rather...a piece of celery string. I don't know what the official name of this is...but you know what I mean. Mom told me that she is losing some hair. She won't be bald...God knows we have thick hair...but her hair is a bit thinner these days.

Mom is having a colonoscopy on Monday. Interestingly enough they do it through the stoma...cool huh?

She also informed me that she only have six treatments of chemotherapy left. She has already had 18 treatments...I guess. Mom is expected to be done with her chemo in early February. I cannot believe the treatment end is near.

My leg.....hmmm....I went to see the physical therapist yesterday. I should probably speak with her baout when my last day will be. I am thinking about seeing the doctor about my other knee...the good knee....the one that makes popping and krinkle noises...and sometimes produces a sharp pain. I am also thinking about seeing a doctor about the foot on the leg I broke. I have wicked pain in my ankle...and arch in the morning. It's probably just plantar fasciitis, but still...it hurts.

Tuesday, December 02, 2003

I cannot believe how long it has been since I have posted. I have been busy with holiday planning...work...physical therapy...and getting re-connected with my friends. I was always connected to them...I just haven't been as accessible...with the leg and all. I have been trying to get back to the life I led before I broke my leg.

We had our first snow of the year today. I was very nervous about walking in it. The ride t physical therapy and then to my office was bad too. It took me one hour and 15 minutes to get from Somerville to Cambridge. My physical therapist was late....I was late. After speaking with my colleagues it is clear that my hour and 15 minutes was nothing. I had a co-worker who spent four hours trying to get into the office before she decided to turn around and go home. It was very slippery out there. I'm just glad I made it without an accident. There were a bunch of spin outs and then like this morning.

I'm a little worried about the ride home tonight. I hear it is supposed to get down into the 20's. I was in a car accident a couple of years ago...and since then I have been a slightly anxious dirver. I will just take it slow.

Thursday, November 20, 2003

I went to see the orthopedic surgeon today. This is my last visit to him. he told me that I did not need my brace anymore...or my cane. However...I cannot run...kick.....or jump for the next two months. I cannot ski.....rollerblade...or ice skate for the next two months. I cannot walk on the sand for two months. I can ride my bike on flat surfaces and go on long walks. I need to be super careful with snow and ice. I learned today what would have happened if I had needed the surgery. It would have been surgery........then six to nine months of recovery. Then....I would have to have the hardware removed...which would mean more months of recovery. Here I was complaining about four months. I am off to physical therapy this afternoon to work on my limp.

Thursday, November 13, 2003

I am going to see Dr. Chaglassian a week from today. I am hoping that he will allow me to lose the brace and the cane. I just want to move on with my life. I have been feelibg better these days. I have been getting out.....seeing people...and trying to get back into my normal routine. I am so looking forward to being brace and cane free. So far I have ruined three pairs of pants and a jacket from this. I don't have the money to buy new clothes.....the holidays are coming. Hmm...yes I am eager to be rid of the brace.....but I am also a little scared. The brace is a bit of a security for me. I remember feeling this way ten years ago when I was without an iv for the first time in over a month. It's scary.......and exciting all at the same time.

My mom recently had a ct scan on her lung. They noticed a growth or..abnormality in her lower lobe on her left lung during a routine chest x-ray. They decided to do a ct scan just to make sure it was nothing. The scan revealed that something was there....it could be that she had been exposed to something in the past and this is a scar....it could be cancer.........it could be nothing. We are waiting to get some films back from Mt. Auburn Hospital to compare. We are hoping for the best.

Wednesday, October 29, 2003

Check out the HD Journals online journal. Glenn..is a 40 year old Hodgkin's Disease survivor who lives in New York, NY. In the introduction of his journal he writes:

These journals are here for fellow cancer patients perhaps only to fill a moment of doubt, fear or curiosity, or to inspire those thoughts to become expression. Hopefully more cancer patients will publish their journals online to help dispel the many myths and metaphors that usually accompany an uncertain and demoralizing disease.

He is a great writer and has an incredible story.

I'm still wearing a brace.....and I now have a cane...and am able to drive.......but it's not enough. I want to be able to run...and jump......and not worry about the pain in my leg...or have fear that it will break again. Walking down the street is scary...I have this fear if tripping over my own feet. It has taken me three months to get where I am today. Dr. Chaglassian says I will be cane and brace free in a month.....three weeks and one day to be exact..........and I find it hard to believe that I will be ready to climb a mountain by then.

My mom didn't go to work yesterday. I cannot remember when she went in last. Just to give you an update....the gas like pains in her abdomen have gone away....now she has chronic loose stool. The opium whatever it is called medicine is working a little bit...but not enough where she feels confident enough to ride the T. They found a spot on her lung while doing an abdominal x-ray a few months ago. They noted it again on another x-ray she recently had and it appears to have grown. They are saying it is probably nothing......she is going in for a ct scan on Thursday to make sure. I stopped in to see her yesterday. She seems down...I don't blame her.

My mom and I have gone to the Christmas Festival at the World Trade Center in Boston for the past ten years or so. I called her recently to see if she wanted to go...she seemed excited about going. We made a conditional plan to go based on how we both feel. She might be having colostomy bag issues.....my leg might not be working the way I want it to. I hope we will both feel like going...it would be nice to eat dips....and check out the crafts....and hang out with my mom.

Monday, October 27, 2003

My friend over at Sigh Club invited me to be a guest writer. You might be able to check me out over at the Friend Blog once in a while. It was super nice of her to include me.

Sunday, October 26, 2003

I went to see Mystic River the other day. I liked it.....but did not love it. The acting was good......the story interesting..........and it was filmed in Boston.....but something about it did not strike me as being great. Not sure why.......but that's the way I feel.

What I did figure out after watching the movie....is my six degress of Kevin Bacon.

I grew up across the street from a guy named Kevin.....who is friends with Dennis Lehane........Dennis Lehane wrote Mystic River.....Kevin Bacon was in Mystic River.

Another one....My friend Elke had a friend in high school named Kara....Kara dated this guy named Shawn Fitzgibbon......Shawn Fitzgibbon is in Mystic River with Kevin Bacon.

My mother grew up with this guy named Kenny Fitzgibbon....Kenny had a son named Shawn Fitzgibbon.......Shawn was in Mystic River with Kevin Bacon.

So there you have it......I'm almost famous.

Thursday, October 23, 2003

Good news....good news..........I went to see the doctor today. I am down to using a cane......I can drive....and I only need to go to pt twice a week. This will go on for a month....and then I will be free. He said my bone is healing quite nicely. Yee haw!

My friend over at Sigh Club asked me to be a guest writer. I finally came up with a topic.....Tchotchkes...check it out.

Wednesday, October 22, 2003

My Mom is on opium. Yup....just spoke with her......the doctor gave her a prescription for a drug that has opium in it. She told me that she had to sign her life away to pick it up at the drug store. She told me that it tastes bad. She also has a bloodclot. BUT...they say it is only a surface clot and nto to worry. She is to take aspirin and apply heat.

Today was the last day of the conference. I went to a session on the records of the "Big Dig"...........website appraisal and preservation....and instant messenger (IM). I learned that IM is a big security risk because file transfer can happen with IM....and most times you wouldn't even know you were downloading something....and that those files don't download to your desktop...but to a separate folder specifically for IM file transfer...very interesting. I also learned that those files coming through IM as attachments get through without going through the normal virus scanning process. Even more interesting.

The Ride picked me up to bring me home today. My driver was a young man who is originally from a small town (11,000 people) outside of Port-au-Prince, Haiti. He was very nice and told me all about Voodoo. He told me that he himself identifies as a Christian.......BUT...that many people in Haiti practice Voodoo. He said that Voodoo was not bad, but that some people chose to do bad with it. He compared it to going out and making money with the bible. You can use the bible's teaching to do good...or you can use it to steal lots of money off people. You can do good...or you can do bad with it.

Tuesday, October 21, 2003

I feel like I haven't posted in ages. It has only been since Friday.....but I feel like it has been forever. Last Friday my friend Carolyn came to stay with us for the night. Carolyn, Stephanie, and I met for dinner.

Saturday she left. We went out for brunch on Saturday and then went to see Kris Delmhorst. It was a great show.

Sunday I went to the ARMA meeting at the Hynes Convention Center. I am enjoying the conference.....but my broken leg hurts from hopping around the building.

I'm off to see Dr. Chaglassian on Thursday.....I hope he will have good news for me.

I went to J. Jill after the meeting today. I had some time to kill before my ride came to get me. I love their stuff...and attempted to try something on. This was a struggle...with my leg...and my brace...and my bag. Two bad things happened. I noticed that my wool pants were being worn down in certain parts by my leg brace. SHITE! I also noticed that I did not fit into my usual size pants! SHITE again! Argh! Not only have I had my life slowed down as a result of this injury....but I have also had a jacket, and a pair of pants ruined......and....I've gained weight...SHITE....SHITE......SHITE!

A friend recently asked a few people in her life to guest write on her blog. I was among those people. I was honored that she asked me to be one of those people....but I'm having a hard time thinking of a topic to write about. She said that part of the assignment is to write about something I don't usually write about. The problem....this blog is primarily about the health problems of my family......but a lot of it is about how I see the world in general......so..if this blog is about how I see the world....then what shall I write about..........what I don't see? I'm still thinking...can you smell the wood burning?

Friday, October 17, 2003

Mom was supposed to start back at work this week. She went into work on Monday.....but not on Tuesday, Wednesday, Thursday, or Friday. She had chemo yesterday. They think she might have a bacterial infection that is causing all of her discomfort. She has lost seven pounds in the last week. Yikes!

I work with someone whose mother was diagnosed with colorectal cancer this week. That's the third person in my office who has had a parent diagnosed with colon cancer in the list six months.

The Colossal Colon is in Boston this weekend. Yee haw...to Colon Health!

I'm coordinating the charity fundraiser for my building this year. We are having a speaker from the American Liver Foundation come and speak during our kick off.

Thursday, October 16, 2003

My co-worker Kathi was driving me home from work today.....and we were having a conversation about Chelsea, MA. I had this Dr. Paul Farmer memory. I hear I have a good memory, by the way. Ok so I remember being in the Brigham and Womens Hospital 10 years ago....and they would come and do these neuro checks. See you can get this thing call encepholopathy (sp?) when you get liver disease...it's an excess of iron or something in your brain...and it makes you act crazy. So they would ask me the day of the week...which I felt was an unfair question because I had been in the hospital so long that I lost track. Or they would ask me other questions like.......who is the President of the United States..........what city do you live in....etc. etc.? One day he proceeds to ask me if I know the name of the Presidents daughter. And for the life of me I could not remember Chelsea Clinton's name. I remember him giving me hints....like....."it's a city north of Boston." Eventually I remembered when he gave me that one. I had this feeling that he found this amusing.......I know I did.

I was "googling" people today and I ran across someone I knew a long time ago......like 16 years ago. So...I emailed her...and she actually emailed me back...fortunately she didn't think I was a freak. I have been thinking about her lately because I have been watching more baseball....yee haw Red Sox! We used to play on the same intramural softball team when we were kids. She was a pitcher....and everytime I would get up to bat...and she was the pitcher...I would strike out....because for some reason we could not keep a serious face throughout this batting process. We would just look at eahc other and laugh. I don't know why I remember this.....but I do. It was great to hear from her today. I'm looking forward to hearing more about what she has been doing for the last 16 years.

Wednesday, October 15, 2003

Went to see the Jane Goodall Chimp imax movie the other day. It made me want to move to Africa to live with the chimps. It was WAY cool.

I went to PT today....I did a new exercise. It was fun...I got to sit in a rolly chair and roll myself around the office. They had closed off the main entrance to the hospital. I was very lucky however...I had avery nice ride driver who came looking for me. They were also nice to me at the hospital grille today. I had a little bit of time left before my ride was supposed to come...so I went and got coffee and a bagel in the grille. They brought it to me even though they had no server service today. She said..."we aren't doing it today, but I will do it for you." I felt so special.

I was having one of those days. I worked from home. I spent the first part of the day checking voicemail/email and responding. I spent the middle of the day working on something...but not feeling like I was getting anywhere. Finally the last part of the day...it seemed to all come together. yee haw!

I'm watching th Red Sox play the Yankees. What is going with the Red Sox Offense? I don't really know much about it...but I heard someone say that on the radio. At least we are seeing some runs come in on this game. We are currently trailing behind the Yankees by one run......5 to 6. Go Red Sox!

Saturday, October 11, 2003

We had a nice time at the hockey game last night. The former Boston Bruins won. I even got my picture take with my mom...and two of the former bruins...Ken Hodge...and Johnny McKenzie.

Mom had good news. She got some bloodwork back and they say she is doing well. They told her that most people's bloodwork does not come back as good as hers....this is a relief. Hope her recovery stays on this path.

Going to Honey Pot Hill Orchards today.

Friday, October 10, 2003

I reformatted and reloaded all the software onto our computer last night. I am pretty proud of myself. The only glitch I have encountered is that everytime I log off of AOL it starts to download a bunch of crap.....and I can't seem to get the screen saver to actually kick in. Aside from that.....it is all working. Maybe I have a career in computers in my future.

We are going to a former Boston Bruins vs. Cambridge Police All Stars Hockey game tonight with my Mom. I think it will be fun. I haven't seen my Mom in a while. I'm still not driving...she's not driving...etc., etc.

I think we are going to check out one of the local farms with some friends tomorrow. I cannot wait to eat caramel apples.........and apple cider donuts.....yummy. It will be fun to see the animals too. I do love autumn in new england.

Thursday, October 09, 2003

Way to go Red Sox!

I was a little confused yesterday. Mom didn't start back to work yesterday.......she is going back next week.

I cannot believe Arnold Schwarzenegger won the election in California.

Wednesday, October 08, 2003

Mom started back to work today. I haven't heard from her. I hope she is doing well.

Monday, October 06, 2003

Looks like my Mom definately had her last radiation appointment last Thursday. She is going back to work on Wednesday, I believe. I'm glad that that part of her treatment is finished.....I'm sure she is too. I hear they went out to dinner to celebrate.

It was a folk music weekend. Friday night we went to an "Evening of Acoustic Music" at the Wang Center. This included Mary Chapin Carpenter, Shawn Colvin, Patty Griffin, and Dar Williams. It was a great show. Sunday I took a cab to Harvard Square.......hopped around.........and went to see Ferron at Club Passim. This was a nice show too.

Aren't you proud of me for getting myself to Harvard Square and enjoying the day? This is not always easy with crutches.

The strangest small world thing happended to me yesterday. I was walking through The Coop and I noticed that Tracy Kidder had a new book out called Mountains Beyond Mountains. I started to read the description and had to buy it. I read inside the front cover and it said this:

At the center of Mountains Beyond Mountains stands Paul Farmer. Doctor, Harvard Professor, renowned infectious-disease specialist, anthropologist, the recipient of a MacArthur "genius" grant, world-class Robin Hood, Farmer was brought up in a bus and on a boat, and in medical school found his life's calling: to diagnose and cure infectious diseases and to bring the lifesaving tools of modern medicine to those who need them most. This book shows how radical change can be fostered in situations that seem insurmountable, and it also shows how a meaningful life can be created, as Farmer - brilliant, charismatic, charming, both a leader in international health and a doctor who finds time to make house calls in Boston and the mountains of Haiti - blasts through convention to get results.

I could not believe this............Paul Farmer had been my resident when I was in the Brigham and Women's the summer of 1993. I knew he had won the MacArthur grant..........and that he was a great guy who brought me a rose one day....and offered to bring me People Magazine. He would come into my room every morning and I would say...."so...Doctor Farmer.......what's wrong with me?" He would always smile....and say...."You have Hepatitis!" I would always smile back because we both knew that I was looking for an answer as to why I had hepatitis.....what was causing my hepatitis...and that hepatitis was a generic term for inflamation of the liver. I had one other resident while I was in the hospital.........but Paul Farmer is the one I remember the most. I am glad that he is being recognized for his work in Haiti and around the world with TB and HIV. You can learn more about what he is doing at the Partners in Health website.

Thursday, October 02, 2003

Spoke with Mom last night. The ct scan she had was inconclusive. Looks like she has some inflamation in her abdomen....but hey are not sure why. It could be the radiation....it could be the antibiotics she was taking. We are hoping it will go away when she stops the radiation. They are saying today is her last radiation appointment. She thinks Monday should be her last. We'll see.

My home computer has a bug on it...I'm really annoyed. Looks like some asshole put a trojan horse on my computer. We need to re-format.....and re-load windows all over again.......argh! What a hassle! I'm a little overwhelmed with this whole process.

Tuesday, September 30, 2003

Joanie took me to return the wheelchair yesterday. This is a step in the right direction. Yee haw! We celebrated at Brigham's....yummy!

Took "the Ride" this morning. My driver was ten minutes early and listened to Howard Stern the whole way. Fortunately I was not offended....but some other folks could be. I read my Bitch Magazine and laughed at the contrast.

I'm wearing a Red Sox baseball cap today...Go Sox! It's shower day....I'm an every other day showerer these days.......and I'm torn about what to do. To wear the cap in the office...or not. Ahh....what an issue. I will be glad when I can go back to showering everyday. Sorry if this is too much info.

Spoke with Carolyn last night.......she is coming to visit in a few weeks.......yee haw! I saw her a little over a year ago when I was in DC. We went ice skating in the sculpture garden in front of NARA. We won't be doing any skating this time around.

Monday, September 29, 2003

Did anyone see Law & order: Criminal Intent last night? The murderer was an archivist.
I spoke with my Mom for a bit last night. She told me about the ct scan she had the other day. They are trying to find out why she is experienceing abdominal pain. It is probably a hernia. If it is a hernia there isn't much they can do right now. I hope they will be able to make her feel more comfortable.

Mom told me that she worked six hours total during the month of September. Things have been rough.

A friend who reads this blog recently asked me about the definition of a "stoma." My Mom has a temporary stoma and I'm frequently mentioning it.
Medterms.com defines it as the following:

"Stoma: An opening into the body from the outside created by a surgeon."

My Mom attaches her colostomy bag to her stoma.......enough said.

I spoke with my friend Heather last night. Heather and I met while we were at Northeastern University. We were both RA's on the same floor in Smith Hall. She currently lives in Pennsylvania.....I miss her tons...she is totally cool. She's one of those people I don't speak with often...but when we do it's like nothing has changed......we just pick up from where we left off and continue on.

Had a great weekend. Went to the Beantown Jazz festival...rented a couple of movies........had dinner......ate brunch..and consumed ice cream with different folks.

Thursday, September 25, 2003

I am scheduled to see the orthopedic surgeon four weeks from today....thats a month. I'm so done with the broken leg. Argh...................it has been two months......thats two out of 363 months of my life. Enough of my complaining....

I was interviewed by a woman doing her Master thesis on the culture of adult chidlren of the mentally ill last Sunday. It was interesting speaking with her. It was nice to hear someone elses story and be able to share my own. I had never really spoken with another person with a similar experience before. I felt someone validated in my feelings.

My friend Kristen just got back from Iceland.........her pictures are beautiful. Looks like they had fun.

Cyn and Mike are proposing a group trip to Scotland.............this does not include their honeymoon.

I have to run.......we are going to a tea training/tasting tonight. I am getting ready for the silver needle and pu erh teas. I'm not a big green or white tea drinker.......but I'm sure there will be some that I like.

Wednesday, September 24, 2003

I was just reading about the latest snakehead fish sighting. Any fish that can grow to three feet long and walk on the earth is scary.

I took the Ride home today. My driver was 45 minutes early.....but told me he would wait. My driver was very nice this time......he told me all about life in Uganda...and what he liked to do for fun (i.e. movies, fish etc.).

I think I might have twisted my knee a bit getting out of the Ride van. I should really take it easy.

We had an Open House at work today. My math teacher from high school was there. What a small world.

My friend Joanie drove me home yesterday from work....she is very good to me. She compared our ride home yesterday to driving through a car wash. I think that's a great description.

My doctor told me that I only needed to go to physical therapy two times a week until I can put 100% of my weight on it. Yee haw!

Only a month left until I can probably put 100% of my weight on my leg.



I took the ride to work this morning. I called yesterday and informed them that I wanted to be at work by 8:00 a.m. I called them last night and they told me that I was scheduled for a 6:55 a.m. pick up. This seemed WAY early to me..it only takes a half hour to get to work. So.....I got up early this morning and got ready for work. At 6:40 a.m. the bell rang...it was the Ride. The driver said...."your ride is here." I said..."You weren't supposed to be here for 15 minutes." I eventually made my way downstairs and got to work 50 minutes earlier then I had hoped. The moral of the story.......expect the Ride to be either 15 minutes early or late. My driver was nice.....but I caught him picking his nose on the way.

Tuesday, September 23, 2003

What a day......I worked from home for an hour or so....and then went off to physical therapy. I finally got into work at around 11:30 a.m. I worked pretty muc non stop before it was time to go home. Of course the second we leave it decided to pour rain. Visibility was terrible...and we could barely see on the way home. Then...the scary part came. I had to get out of the car...in the horizontal rain...and get into my apartment safely. I managed to do this by drying my crutches off on the rug on the 1st floor. My crutch only slightly slipped once. I made it into my apartment only to find all the windows open........and water everywhere. Argh! I closed the windows and cleaned up as much as I could.

Monday, September 22, 2003

I spoke with my mom last night. She said that she has decided not to return to work until she is finished with her radiation. I believe she has two weeks left. She was having a hard time with the chemo and radiation. I hope she will feel better when the radiation ends and that this is not a progressive thing.

Thursday, September 18, 2003

The latest news on my mom is that her surgeon thinks that she has a hernia. I believe this is something that can happen during surgery. One would think so.....with all that poking around the abdomen and such. Unfortunately she has had some pain as a result.

Aside from that I think she is getting tired (physically and emotionally) with the whole chemo radiation combo. I hope she will feel better whne the radiation ends. It should be only a few more weeks of radiation.

I took "the ride" again yesterday. No one called to confrim my pickup...and the driver was a half hour late. However...this experience was better. I could get up the stairs to get into the van. AND...the driver wasn't praising God during my drive...well at least not out loud.

I saw a good film on WGBH last night. It was called Blue Diner. The film is about the relationship between a Puerto Rican woman...and her daughter...and the issues that impact their lives. I would like to add that the film takes place in Boston and some of the scenes were filmed at the Massachusetts Historical Society and the Boston Public Library....both of which I recognized. WAY COOL! I should also note that the film takes place in and around a Boston landmark...the Blue Diner.

Tuesday, September 16, 2003

I took "the Ride" for the first time yesterday...what an experience. First of all...I called them to request a 6:30 p.m. pickup. They called and said they would pick me up at 7:00 p.m. Then...they were 20 minutes late. The driver opened the door of the wheelchair van...and the stairs were too narrow for me to get in with my crutches....so I had to use the wheelchair lift. SO...here I am.....standing up....and holding on for dear life....as I am raised into the van. This was scary and embarrassing all at the same time. Then the whole ride home...the driver is singing...and raising one hand......and getting really into this Haitian music. I finally realized it was praise music when he started to say "Hallelujah!" at the end of a line here and there. I was by myself in the van...and got a little chuckle out of the whole experience. I am taking "the Ride" home tomorrow evening too...I wonder if it will be as memorable.

Thursday, September 11, 2003

I went to see the doctor today. The appointment took way long then I had expected. The x-ray technician was late.....my doctor was late. I finally got to see the doctor one hour after my initial appointment time. He said that my bone had shifted a bit....but that I had formed a callous. He is allowing me to put 50% of my weight on my broken leg...and I am to see him in six weeks. As far as I know I still cannot drive...I am going to call him to make 100% sure of this...I forgot to ask in my appointment. Oh.....and of course I am to wear my brace all the time............I am only allowed to take it off when I wash.

Argh...so I was a mess after my appointment. I should try to be positive and excited about the fact that I can put some weight on it....but...I'm a little fixated on the six week.........bone shifting.......no driving aspect.

I need a new attitude!

Wednesday, September 10, 2003

Today is the birthday of my cousin Kevin....and my friend Steph. Happy Birthday to them!

Tuesday, September 09, 2003

I would like to acknowledge the folks who have been so great about getting me back and forth to work...and to my appointments. I feel lucky to have such great people in my life. Brenda, Carol, Cynthia, Joanie, and Kathi have all been wonderful about driving me around the city.....back and forth to Somerville, Cambridge and Waltham. Thanks!

My mom called me yesterday to tell me about the Colossal Colon that is coming to Copley Square in Boston on October 15-18, 2003. The Cancer Research and Prevention Foundation website describes the Colossal Colon as the following.

The Colossal Colon is a 40-foot long, 4-foot high replica of a human colon. Visitors who crawl through the colon, or look through the viewing windows, will see healthy colon tissue, colon disease, polyps and various stages of colon cancer. The Colon was modeled after a real colon taken from colonoscopy film footage and is extremely lifelike.

Sounds cool right? I'm bummed out that I probably won't be able to crawl through the colon by that point. Maybe I'll just go and show my support.

And......the most recent broken leg developments are.......I started wearing a shoe on the foot of my broken leg. It felt all cramped at first. My physical therapist said I should get used to wearing a shoe again. Today was my first full day with a shoe. Maybe I'll start training for the Boston Marathon. Hmm...I don't think so....I think running is kinda boring.

Friday, September 05, 2003

Ok so....what's new in my medically challenged life....

Yesterday my Mom had radiation in the morning and chemo in the afternoon. In the middle of all of this she managed to buy me some tickets for "the Ride" and go shopping. She is a strong lady to withstand.......burning, the MBTA, the craziness of the city, and poison all in one day.

I went to pt today. My physical therapist decided to increase my exercises by adding ankle weights to my broken leg. I complained that she was being mean...because I have no threshold for pain...and she quickly came back with "well your body weighs alot more then those three pound weights." Ok...so I was put in my place. Hopefully a week from tomorrow my octor will finally give me the blessing to put 50% of my body weight onto my broken....hopefully not still broken by then leg. I really...really hope he lets me....I'm so done with the crutches.

I worked from home today. I registered some people for workshops...assembled a mailing...and created a PowerPoint presentation on functional records management. After five hours of working on the coutch...I decided to try and move the computer. I somehow managed to get the laptop from the living room to the bedroom without breaking either it or myself. Ah....risks.

I spoke with a college friend last night. We do not talk often...but when we do it is always fun. It was nice to catch up with her.

Thursday, September 04, 2003

I went into the office today. I decided to wear pants for the first time since I broke my leg. My co-worker was very good to pick me up this morning and drive me to work. The problem......it was raining this morning....hard!!! So.......I was soaked by the time we go to her car. My cotton cargo pants..........and wheelchair were all...cold and wet. When I first got here I transferred to an office chair for a little while. I eventually moved back to the wheelchair after it dried. The problem is that....my butt really hasn't had too much time to dry. It's not soaked...but there is definately a little dampness going on.

Wednesday, September 03, 2003

Everytime I log onto Blogger the interface looks different. I cannot tell if its my browser...or if blogger just changes everyday. ARGH!

We took my mother out to celebrate her birthday the other night. We went to the Elephant Walk..it was yummy. I bought her a cd walkman...figuring she could listen to it at chemo.....but come to find out she already had one. I think she is planning on exchanging it for something else.

I went to pt today. My physical therapist said that when I had started bending my knee I was at 84 degrees....now I'm at 106....yee haw.

I worked from home today. I definately get more done when I work at home.

Yesterday I slipped in the kitchen at work. There was some water on the floor..and my crutch slipped. I put some weight on my leg....but I think it's ok. My knee appears to be working correctly.....and I don't have any more pain then usual.

Sunday, August 31, 2003

I found out today that my high school religion teacher died. Greg Lewis was a good man. I took a number of classes with him during my time at MSJA. Social Issues, Death and Dying, and Peace to name a few. I also knew him because of my involvement with the Social Justice Club. During my time at MSJA I served as Vice President...and President of the Social Justice Club. Mr. Lewis was the faculty advisor for the Social Justice Club. Mr. Lewis was one of the first people to teach me about Feminism, Civil Disobedience, Dorothy Day, social responsibility, Martin Luther King, Ghandi, Apartheid, Steven Biko, the stages of death, Elisabeth Kubler Ross, and the writings of Richard Bach. This may sound corny....but I really do owe a big part of who I am today to him. He will be missed.

My mom celebrated her birthday last week. We were supposed to take her out for dinner on Thursday.....but she spiked a fever......and was having trouble with her stoma.....so we had to cancel. They also cancelled her chemo for the week....etc., etc. They put her on an antibiotic......she has been feeling better the last couple of days. We rescheduled our dinner celebration. She started radiation last week. She seemed to be very nervous leading up to it. I think it was the mystery behind it that was scary. I spoke with her after her first radiation appointment....and she appeared to be fine. I think the mystery was gone.

My leg...let's see. I have an appointment to see the doctor on September 11th. I'm feeling a little wierded out by the date. I'm praying that Dr. Chaglassian will allow me to start putting some pressure on my leg on that day. I am scheduled to see Jen...my physical therapist right after I see Chaglassian. So...if he says I can put weight on it...I will get going on it.

So how am I dealing with the broken leg thing? Well I have been making an effort to get around without the wheelchair. Work has been tiring. I feel completely powerless and frustrated with having to rely on others to get me around. I have been trying to get out as much as possible....but it's hard.

I finally got word from the MBTA that I am eligible for the RIDE. However I have to buy ride tickets and I can only get them by going to Back Bay Station or waiting seven to 10 days to get them via the mail. Argh!

We went to see the New Orleans Klezmer All Stars at Johnny D's. I think I did a good job at getting up th step to get inside the club........and at moving around. The woman at the door was very nice and understodd thw whole non weight bearing leg thing. She told me that she had surgery and had been non weight bearing for three months. Yikes! That made me feel a bit better.

We went to eat at Oleana the other night. They had a ramp...and were very helpful with the leg thing. The food...and the environment....was amazing. I Highly recommend it. We were there for two hours...and loved every minute of it. My leg didn't mind it either.

I have been watching a lot of Degrassi: the Next Generation. It's pretty good....but not as great as the old show. Some of the old characters even show up.....like Joey...and Snake.

Friday, August 22, 2003

Mom went to her last radiation workup appointment today. She starts next week. She said it's a super sterile environment....like something out of a science fiction movie. This is very different then when she goes to chemo. The people at chemo are super friendly and approachable. I wonder what makes the two environments so different.

Thursday, August 21, 2003

Went to see the doctor yesterday. He told me that I have to wait three more weeks before putting weight on my leg. He said he would take an x-ray in three weeks and make the decision. If all looks good then I will be able to put 50% pressure on my leg. How do I measure 50% pressure anyway? Hmm.......maybe my physical therapist will give me a clue. I'm annoyed that I have so much time before I can put weight on it. It has already been three weeks. He initially said four to six weeks...I was hoping for closer to four.

Had physical therapy yesterday too. It was very exciting.

Mom saw the stoma nurse therapist the other day. It appears she needs a smaller seal for her colostomy bag.

Mom and I were talking about how it's sometimes easier to deal with a life or death thing like cancer or liver failure then something some would call trivial such as a broken leg or colostomy bag. It's lifes inconveniences that are so difficult like.....not being able to pick something up off the floor....or being afraid ones colostomy bag would break. I don't mean to trivialize a terrible thing such as cancer or organ failure.....believe me...it's scary knowing you could die. I only mean to highlight that small things can be a big problem.

I was talking with a friend the other day about how when one has an injury...or illness that one needs to go through a grieving process. I think this is true. I definately had a grieving thing going on for a week or so.


Tuesday, August 19, 2003

So a lot has happened since my last post. I decided to go to Maine for a week. We went to Lewiston, Bar Harbor, Frenchville, Bangor, and stopped off at Old Orchard Beach on the way home. Part of why we broke the trip up was because all the sitting in a moving car business was bothering me knee. SO we did the world tour of Maine....it was nice. I started physical therapy yesterday. My Physical Therapist is nice. She gave me a whole bunch of painful exercises for me to do......which she reassures me are good for me. I started back to work yesterday. I went in for 5.25 hours yesterday...and 7.50 today. I'm tired. I am working from home today.

I think I have athletes foot. I got a bloody nose last night and it took a while to stop. I think it's the aspirin I'm taking to prevent bloodclots.

So back to my Mom. She is starting radiation next week. She met with the stoma nurse therapist today. She has been trying to work a few days a week. She has decided to face the cancer head on and be aggressive. I guess now is the time.

I haven't seen much of my Mom recently. It's because I have a fractured tibia...and cannot drive...and I'm tired a lot too. I wish I could be there for my Mom more.

Thursday, August 07, 2003

Fell on my foot again last night. I was trying to be independent after my shower.....this is no good. I hopped on my good foot......and it sort of stuck to the floor.......and my body kept going...this is bad.

Went to see the orthopedic guy today. He says I'm doing very well. I got a new brace....and he said I can start trying to bend my knee for a half hour twice a day. Oh yes and to tae aspisrin to prevent bloodclots....and work on moving my foot back and forth.

I still cannot drive. ARGH!

Been working from home a few hours this week. Probably six hours...that sounds right.

Starting physical therapy soon...three times a week...YIKES!

Mom is going to get poisoned at te hospital today.....ah..chemotherapy. She is starting her radiation at the end of the month. She got her tattoos the other day for radiation. She said she would never get a real tattoo after this experience because these little teeny dots were painful enough. MY moms getting tough. She got tattoos this week and also won a Harley Davidson gift pack by scratching a lottery ticket. Rrrgh! :)



Sunday, August 03, 2003

I went to the see the doctor last Thursday. He took another x-ray of my knee because I had put a teeny bit of pressure on my foot over the course of the week. The x-ray revealed that I have mutliple tibial plateau fractures. I was really upset to find this out. The doctor literally said.."we are dealing witha bag of bones here and we don't want it to fall apart." WHAT THE HELL KIND OF COMMENT IS THAT to make to a patient witha broken limb? I'm supposed to be getting my new brace this week.

I've been really down about all of this between my mom's cancer....and this crappy broken leg. I've been crying left and right....I have no energy. I was alienating everyone except my family. I didn't feel like I could get by with seeing people without bursting into tears. I'm trying to reach out to the people who have been trying to support me these days. I should let them in.

My knee is somewhat painful. I have these terrible charlie horse like muscle pains in my calf. What progress has been made....? I can lift my leg a bit. I am getting better on my crutches. I am in less pain.

Wednesday, July 30, 2003

So.....about my Mom...she has decided to go ahead with the radiation. She will be starting that soon. We are still waiting to hear from her doctor.

About me.....I broke my leg on Sunday.....yup.......tibial plateau fracture. I was running for the bus.........my foot hit the ground....I felt a burning pain in my knee....and then I fell and hit the ground. It's all crazy....I don't know why this happened...I was only running. Maybe it's because I'm double jointed.....or maybe it's because I was on Prednisone for such a long time. I hate this. I cannot bend my knee or put any weight on my foor for four to six weeks. I will need to wear a brace that goes from the top of my thigh to my ankle for four to six months. I cannot drive for a few weeks. I am in pain. My leg feels like a lump of painful dead weight. I feel almost paralyzed sometimes. I am trying to learn how to use the crutches....we rented a wheelchair yesterday. I will be out of work for a few weeks. Even when I go back....I'm not sure how it is going to be. My family and friends have been wonderful. Although I'm in this depressed.........percoset induced exhausted mode. I wish this never happened to me. How much medical trauma can one person....one family take in one year?

Wednesday, July 16, 2003

I feel like I haven't posted in an age.....I guess it has been a week. We went to Provincetown last weekend. It was nice to get away for a bit. This was the trip we had postponed because Mom was in the hospital in May. Mom saw the surgeon on Monday and won't be seeing him for a couple of months now. She met with the radiology oncology person yesterday. He outlined some of the issues with the radiation.....positives and negatives. He is looking at her films.........and reports to make a more educated decision about how to proceed. The thing that is different with her possibly getting radiation...is that it isn't 100% clear which way she should go. We knew she needed the surgery....we knew she needed chemotherapy......but the radiation is another story. I feel like this is the first issue that has come up where she has a real say in how to proceed. I don't like these types of decisions.....because its sort of like playing roulette with your own body. There are positives.....there are negatives etc., etc. I guess one would have to way these and make a decision. I wish they had a definitive answer. Of course they don't.

Mom is looking into long term disability.

Today she mentioned something about going in town to do some shopping. I'm glad she is trying to get around.

Tonight I am having dinner with a friend I have known for 15 years. She currently lives in LA and is visiting for a week. Unfortunately her aunt has cancer and my friend was hoping that a visit from her would cheer her up. I hope so....I'm sure it will. My Mom knew that my friend was visiting and had expressed some interest in seeing her. So...after dinner we are planning on hanging out with my Mom for a while. I think it will be nice.

Wednesday, July 09, 2003

I took Mom to chemotherapy on Monday. We got there a little early and they brought us into a small room with a chair, tv with remote, and a bunch of hospital equipment. I met Mom's nurse...who looked very familiar to me. I later realized that this woman had gone to my high school and graduated the year before me. They prepped my mom by wrapping her arms in a heating pad...she has bad veins. They finally found a vein and she got a nice new iv. Finally after about a half hour of this preparation she was ready for her chemo. This consisted of her getting one kind of poison through the iv for a little while....followed by another poison for a while......then another one. This process took an hour and a half or so. We learned while we were there that people read a poem and ring a bell when they have finished their last chemo. I thought this was a nice...and sort of touching tradition. One woman rang the bell while we were there...which was followed by a lot of hugs...and even a few tears...I would guess. I almost teared up myself....not sure if watching this woman finally overcome this awful disease....made me feel this way....or if it was because I had my period.......probably more of the first....and some of the latter. I was thinking at the time...that my Mom had 21 more chemo treatments in front of her..........which will take her into the winter at this point. I was longing for the day she would ring that bell. I was thinking that I wanted to be there with her when she rang the bell.

Mom went to see the stoma nurse therapist today. It appears she had a reaction to the sutures. Mom said that they burnt around the irritation to try to cure this problem. See...more burning and poison. Cancer is all about burning and poison I think.

Lately I have been reading Bitch Magazine and listening to Sleater-Kinney, and the Butchies. I've really been into the girl power thing these days. Not that I'm some supercool punk feminist womyn..........I'm just your regular old not really butch....not really femme, 30 year old dyke archivist who likes yoyos, drinking coffee, and writing in this blog. I have just been feeling like I have a lot to vent about...or at least a lot to say about......my Mom's illness...the medical community....and the world around me.

Monday, July 07, 2003

Mom got a call from the hospital saying that they had "forgotten" to look at her chest when they did the CT Scan. So....she needed to go in and have them do that. Silly radiologists.

So....Mom also went to see the oncologist the other day. It appears that the size of her growth and it's location are of some concern. They are thinking about using radiation in conjunction with her chemotherapy. Mom says...not only are they poisoning me.......but now they are thinking of burning me too. I hope they won't need to do the radiation.......but if it will make her better then I'm all for it. It's just that the process sucks..and is awful.....and is nothing I could imagine at this point in my life. Yes...I had liver failure...which incluced peratinitis (sp?) a blood clot in my groin....my turning yellow......blood that would not clot......ascites........fluid in my lungs...and hypoglycemia..........but none of that involved poisoning my whole body or burning me. My Mom has to be strong.......I know she can do it.

I'm taking Mom to chemotherapy today. This will be my first time....her 3rd.

A friend sent me an article on alternative cancer treatments and prevention. She says it is great and has some wonderful information in it. She swears by it in fact. Her aunt has cancer now and is getting chemotherapy. My friend said she wished she had read the article the first time her aunt got sick. My friend is even following some of the preventative advice listed in the article.

Wednesday, July 02, 2003

So Mom has been doing better these days. She met with the stoma nurse therapist recently. It seems to be working out with the new two piece colostomy bag. This new bag has a protective barrier between her skin...and well.....her poop. She said the people were nice at the stoma clinic. I was a little annoyed to learn that her surgeon had not even looked at the stoma with his own eyes since the day of the surgery. AND...she has seen him twice since her surgery. Argh...surgeons! Fortunately for him and her.....this new bag seems to be working out and she appears to be happy with the stoma nurse therapist. They gave her a new type of bag..and some anti-sting spray...etc., etc. She is still seeing the visiting nurse too. Yesterday she had a CT Scan...............I think they are just looking around to make sure evrything is ok. I'm glad they did this...she was so sick when they did the surgery that the first scan wasn't very good. They also found some blood in my Mom's urine.....I hope this is nothing. Mom might be going back to work soon. Recently we signed up for a low-fat, high fiber diet class at the local Whole Foods Market. I hope this will give us some information on how to eat for a healthy colon.

Wednesday, June 25, 2003

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..........

Monday, June 23, 2003

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!

Wednesday, June 18, 2003

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.

Thursday, June 12, 2003

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.

Tuesday, June 10, 2003

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.

Sunday, June 01, 2003

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.

Friday, May 30, 2003

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.

Thursday, May 29, 2003

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."

Wednesday, May 28, 2003

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.

Tuesday, May 27, 2003

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