February 1998
Monday, February 2, 1998
The following is something I posted to two email discussion lists:
Hi,
I am sorta in lurk mode these days.. I go to see my PS tomorrow for another follow up appt. PS and I get to discuss the future.. Lots of things to discuss there. :-/
I better give the newbies some background here... I am 33 yrs. old and was born with a rare craniofacial anomaly called arhinia, which is to total absence of the nose... I also have a midline cleft as well as other craniofacial anomalies as a result of the arhinia.
I have a long history of surgeries... 35 to be exact... everything from ear and nasal tubes to 10 hr. reconstruction. I am getting ready for my 25th reconstructive surgery sometime this year.. PS is looking at columella reconstruction.
Lots of things play into this surgery..
1. Risk - There's a 10 percent chance of my columella becoming detached. It's already become detached twice after two different surgeries.. once in 1987 and again in 1989. Finally had a successful reattachment, which was done in two stages and three weeks apart, in 1992. I am willing to take the 10% risk even tho it means ending up at square one again so that's not a real big issue.
2. Timing - I want to move the surgery up before I start working again because: a. I won't go to another PS for the reconstruction. I only trust current PS to do the reconstruction because he assisted retired PS with the attachment in 1992. No one knows the true nature of my columella better than current PS. b. The only PS I would consider going to would be the other PS at the cleft/craniofacial clinic I go to. But my real trust and faith lies in current PS.
3. Weaning - PS wants me totally weaned from tubes before he does the reconstruction. I got news for everyone, including him.. It isn't gonna happen. Hey we tried it for six weeks after the surgery in Sept. and the nostrils started closing up. I know all about the tube weaning.. Been doing tubes for much of the last 19 yrs.
4. Nostrils opened more - PS talked last time about possibly opening up my nostrils again.
I am trying to see if he will move the columella reconstruction up to this spring. I have my insurance until July 31st if I don't go back to work until after the moved up columella repair.
No decisions about any surgery ever come easy. Too many factors play into it all especially now since I have all the scar tissue.
Tuesday., February 3, 1998
The latest news:
PS will be doing a columella (the piece between the nostrils) reconstruction. He will be doing a flap from the fold of my left cheek. The flap will tunnel under the left nostril and become part of the new part of the columella. It's the same procedure I had done six years ago.
PS consulted with the other PS in the clinic. He agreed with my PS on the procedure.
While my PS was talking to the other PS, I was sitting and listening to them talk about my nasal reconstruction. My PS told him that the bone in my nose was taken from my skull. I had to correct him.
Looks like Tues., April 7th for my next surgery. It will be 2 to 3 hours in the OR with an overnight stay for me.
That's just nine weeks away!
Deloris, one of the nurses, came in and told me how excited she was to see my gallery page on Wide Smiles. She was sooo excited to see the pictures and listen to the sound files. I gave her the URL for my main page.
Looks like I am gonna build and maintain PS' website.
Wednesday, February, 4, 1998
I woke up and still couldn't believe that I already had a surgery date.. blows my mind.
Saturday, February 7, 1998
I posted the following on a listserv:
I have lots of scars on my face.. I have the scars from my abbe flap, the scar from the surgery six years ago.. Just a bunch of scars. I call them my "battle scars" because there are times when I have looked like I have been thru a war.
With with the surgery in April, I am gonna add another battle scar. :-) I call it my twin scar cuz I will have matching scars. :-) Most people would be upset. I'm NOT. In fact, you should hear my mom explain it all. She tells others that it is going to create a scar. But that because of the surgery that I can hopefully get rid of the tubes eventually.
I NEVER wear makeup to cover my scars. The only time I've ever worn makeup was for dance recitals and my senior picture in high school. I've never worn makeup since then.
I can't believe some of the reactions I've had to my upcoming surgery.. I've been waiting for this surgery for a VERY long time. I don't want anyone to pity me or feel sorry for me because I have to have another surgery. I just want people to support me by eating pizza and saying a few prayers and/or have some some good thoughts for me when my surgery comes up.
I have paid attention to some of the kids' reactions in particular.. I was telling one of J.'s kids about it. He was like "Oh" and then I told them that we would have more pizza and he was like "Oh cool" LOL
Nancy's son, David, got all teary-eyed when she told him. He was like she is a grownup and she can tell her mom no. I was really touched by that... I started getting teary-eyed.
I told my oldest niece, Ashley, last night when she was over. She asked me about having a sore throat.. I told her for maybe a day or two.. She asked me about wearing my partial.. I told her that I should be able to wear that right away. She asked about the liquid diet and I told her that I should be back on my regular diet right away. She asked me what the doctor was going to do. My mom and I explained it to her.
My family and I are taking it all in stride. My parents are very matter-of-fact about it. They hate to see me go thru anymore surgery but they understand as well as I do why the surgery is necessary.
I am not scared about my surgery. I am like anyone else getting ready for surgery, I am a little nervous. I am really anxious to get the surgery behind me. I can handle the surgery. I don't need any explanation of what's gonna happen.. I've been thru the same procedure before. I've had many surgeries so I know what to expect.
I asked my mom this afternoon to ask her birthmom to come for my surgery. I want her here for the surgery. Plus I haven't seen her in a year. When my mom talks to her later tonight, she is going to ask her if she wants to be here for the surgery.
Sunday, February 8, 1998
It's been five months since my last surgery and here I am getting ready for another one in two months. I am not overwhelmed by it. In 1981, I had two surgeries in less than an eight-month period.
I know surgery is coming because I had my first weird dream about it.
Monday, February 9, 1998
I am debating on the forehead graft. Should I have it redone or not? Two things to no excite me about having it done:
1. Sacrificing hair - Been there done that but I still hate it and can't face up to it. (The only fear I have about my surgery that I haven't overcome. Go figure)
2. Tissue expanders - PS has talked if he replaces the graft that he would do tissue expanders. - That means three things:
a. Having needles stuck into my forehead once a week for a period of a few weeks
b. Walking around with a huge lump on my head for the same period of time as
c. Going back to the OR to have the expanders removed.
I will still think about it and talk to PS at pre-surgery planning appt. next month.
Tuesday, February 10, 1998
Eight weeks (56 days) until my surgery.. Time is cruising.
Sunday, February 15, 1998
Today has been a down day for me. I am going thru a natural feeling for me as I am getting ready for the surgery in April.. "I am 33 years old and still going thru this."
I get sick and tired of hearing that the number of surgeries doesn't matter.. Well geez I am only going for my 25th (35th trip to the OR overall) reconstructive surgery in April. And I am not suppose to look at the number of surgeries I've had and my age?? Give me a break!! I don't really like to have it shoved in my face that I am still going thru my surgeries. If someone would have asked me twenties years ago if I would still be going thru my surgeries I would have said, "NO WAY." Guess what?? It's been almost twenty years later and I am still going thru my reconstruction. STUFF HAPPENS!!
My body needed the breaks from surgery every now and then. When I had the five-year break back in the '80s, it was so hard going back into the surgeries. But, when I had the four-year break in the '90s, it wasn't so bad because I was ready to move on thru the next phase of reconstruction.
My saving grace is.. I am almost done. I can see the light at the end of the tunnel.
Overcoming fears - I've overcome a lot of my fears with my surgeries. They say that overcoming fear is facing them. And I have done that for the most part. I use to fear needles. Now I have learned to cope with getting stuck with any needle by relaxing and focusing. There's one fear left for me to overcome.. hair shaving. That's why I am thinking of redoing my forehead graft. It's time to conquer that last fear.
When my surgeries are done, I know that I am going to have very mixed emotions about it.. Disbelief that is all over.. Happiness that it is all over.. And sadness because that part will be over. But I do know one thing.. I am having a huge party after my reconstructive surgery is done!!
Sitting here writing this journal entry has helped sooo much and talking to my good friend, Kat. :-)
Mon., Feb. 16, 1998
I read a post that disturbs me a great deal.. It was about remembering nasal packing. I've had many surgeries where there has been packing in my nose. I also use nasal tubing that extends to the opening of my nasal passages. I use the tubes 24 hours a day, seven days a week. This person obviously has never had to use nasal tubing at all.
Tues., Feb. 17, 1998
Seven weeks (49 days) until my surgery - Times marches on.
Mon., Feb. 23, 1998
Boy do I feel nervous today. I don't know if it is nerves over my own surgery or all the kids on a list facing surgery this week. There are eight kids on the list having surgery this week.
I got a call from PS' office.. One of the gals called me to let me know that I was having surgery on April 7th at St. Luke's. I told her that I already knew.
Tues., Feb. 24, 1998
Six weeks (42 days) to go.. Remind me never to set a surgery date this far in advance. Way too much time to think about it. :-( I will keep myself busy between now and then with online and other stuff.Mon., March 2, 1998
As of this AM, I am really rethinking my online time. I think that I am stressed due to my surgery in 36 days and some other stressors. I would rather be stressed out now than right before my surgery. I want to go into my surgery STRESS-FREE!! Last time I went in stress-free and came out in good shape!! I may ditch IRC and online for awhile. I am stressed out about the following:
1. People get all bent out of shape if I am not online for several hours. Geez don't I get a break from it all for awhile??? Sometimes I need a break from it all.
2. I think that part of my stressors are certain places on the internet. I don't agree with a lot of the feelings that are expressed in some places by other adults so I don't answer a lot of posts. I would rather go spend my time on somewhere else where I can really identify with some of the people.
People are saying that I should open up more on a listserv. WHY?? I have and I just feel too vulnerable there. I think that it is a matter of some people I don't trust even tho some of them are on other lists. I would rather do it in my journal or with people I really trust. And people don't really understand my issues there. My friends from there understand more. And even then I don't want to open up totally unless it is in private.
I get sick of getting kicked in the teeth on a listserv for doing nice things and not agreeing. I am seriously thinking that people there are taking me for granted. If I am not online, people start having a hissy fit. What are they gonna do when I start working???
Maybe I need to leave both the listserv and IRC for awhile... Just say something to a few people and let everyone else wonder, ya know??
I know who my REAL friends are!! I cannot believe how perceptive Cindy and Gisela are - They've noticed some of this crap and I bet if I talked to some others they would too.
3. Money situation - My finances suck. I am still able to stay online. Thanks to MC.
4. Speech therapy - I really don't wanna do it. KU's being trying to contact me for a month on that. They can't get thru on my line. Gee I wonder why??? LOL I don't like to go thru two evals and at the end of the second one be told that it isn't gonna probably work anyway because my speech patterns are set for life. Why the heck should I go waste my time then?? And anyway I don't wanna be the subject of some student speech pathologist's thesis. Plus most of those exercise are geared for kids.
5. Surgery - I cannot believe I am doing this again. And so soon again.. I should have waited to set up a date. Having this too much time to think about it SUCKS. Plus I am waiting to get the approval from the HMO. Just too much to deal with at this point and time. But by the time the surgery date rolls around, everything will be cool :-) It's just having way too much time on my hands and stressors is causing me to stress out even more.
Sitting here writing and talking online with some friends has helped some. Watch for more in the days to come :-)
Tues., March 3, 1998
Five weeks, or 35 days, until my surgery - Time is passing very quickly.
Sat., March 7, 1998
One month until my surgery.. Time keeps marching on.
Sun., March 8, 1998
It's been six months since my last surgery. I am thinking.. Am I crazy for doing another surgery so soon?? This feeling shall pass.
Mon., March 9, 1998
My mom was writing an email to one of her brothers and I just happen to catch a glimpse of it. She was telling him that I was having surgery on April 7th. She was also telling him about the surgery not being a guarantee of getting rid of the tubes.. But she knew I was tired of the tubes and didn't blame me for trying. I LOVE YOU, MOM!! You really do know how to read me!! She really knows how to read me without me ever saying anything. She is definitely intune to me.
Tues., March 10, 1998
Four weeks, er 28 days, to go!!!!! I am still amazed, nervous and anxious.
Wed., March 11, 1998
A lot of things keep going over and over in my mind.
It's been almost 19 1/2 years since my first Tessier surgery.. I have to stop and think.. Geez I am the first craniofacial patient to be ever be operated in the Kansas City area. My PS did the age thing on me a few months ago.. LOL I had to go get some photos taken because he was going to be tested on my case for his oral Boards. He made some comment to the photographer about me being one of the oldest craniofacial patients in KC. Talk about feeling OLD. I know that I am the only one in the first group to still be going thru my surgeries. It will be twenty years in October. That's a long time.
Tues., March 17, 1998
Three weeks until my surgery - Unbelievable!! Next week is my pre-op appt. - YIKES!! Still haven't heard anything from the HMO. I guess I better get on the phone.
Wed., March 18, 1998
I called PS' office today to find out about my approval. The lady who I had worked with previously is no longer there. YIKES!! I am gonna miss her because I liked working with her. I left a message for her replacement. I hope that she calls soon. The date is getting closer and closer. If she doesn't call me back tomorrow, I will definitely get up and call her Friday AM.
Thurs., March 19, 1998
Old issue coming up for me - I feel that I don't receive enough support online at times. I don't have to justify why I feel the way I do. Plus if I do say anything, people don't respond much at all. I avoid IRC a lot these days for many reasons. I don't need the stress. I was really ticked off by a post I saw from someone.. No one was around to chat and the person was upset. I am really not into listening to people whining (UNLESS the person is a friend) these days!!!! And the same person whines over and over and over. It gets old after awhile. I have a lot to whine about these days but ya don't see me whining online. I rather talk on IM one-on-one with my friends these days about how I am feeling. I sure as heck am not going to discuss my feelings on any list or public chat about my upcoming surgery. Those feelings are private.
Fri., March 20, 1998
I got some real sad news: The daughter of a man who had come into the channel recently died from an air embolism. It happened at the end of her facial distraction surgery. C. was only 3 years old. :-(
C.'s death brings up some real issues for me. They are old issues. The deaths of R. and H. still haunt me. A.'s near-death experience still haunts me. As much as I try, I cannot forget those things. These things stay with you for the rest of your life. But they don't stop me from functioning or prevent me from doing anymore surgery. They are events that make me aware that anything can happen with surgery.
Sat., March 21, 1998
I went to the eye doctor for the first time since Dec. 1993. My eyes have changed very little. Never go with your parents if you are over 18. :-) They will ask the eye doctor or any other doctor questions. LOL I know that my parents do it because they are concerned. :-) They dilated my eyes and it took all day for them to become clear again. I hate having my eyes dilated.
Sun., March 22, 1998
I felt sick all day long. I thought that I was catching something.
Mon., March 23, 1998
I feel better today. I know what it was.. NERVES.
I called Brenda today to confirm my appt. time tomorrow.
Reality is really starting to set in.. I am having surgery two weeks from tomorrow. Reality sucks sometimes. LOL
Tues., March 24, 1998
Two more weeks until my surgery.
I went to my pre-op appt. today.. Lots to share:
First of all, PS talked to medical director for HMO... He was told no problem for using same hospital. I told him that I am just waiting for the paperwork. My PS don't mess around. :-)
Second of all, there will be TWO surgeries.. The first surgery will be to place the new columella in front of the original columella and raise the tip of the nose. The second surgery will be to release the graft that will be attached to columella after surgery number one.
We've decided against replacement of forehead graft. THANK GOODNESS!!!! I didn't really want to do it anyway. Heck I've lived with it for 19 1/2 years.
Surgery number ONE will be April 7th at NOON Central Time. I have to be there like 90 minutes before surgery time. Surgery number TWO will be scheduled for 2 to 3 weeks after my first surgery.
I gotta stay healthy... If I get a cold between now and then PS automatically cancels surgery.. I will be avoiding a lot of crowds for the next few weeks.
My PS and I talked.. I've had soo much surgery that it does not take much explanation or me asking many questions. Geez is that a sign of way too much surgery?? Heck no one needs to tell me what to expect the day of surgery.. Been there done that way too many times.
I've got to go get labwork done in the next two weeks. I will just go to the Blue Ridge office like I did last time.
A sad note: My PS told me about his brother in AZ who has a recurrence of colon cancer. They just found out about it two to three weeks ago. He's had a crazy schedule because of it. Slight chance my surgery will be delayed.
A funny note: I found out that my PS is on AOL. I get to give him soooo much grief about that on the day of my surgery. ROTFL!!
Wed., March 25, 1998
I am having very mixed feelings about my upcoming surgery.. Nervousness, anxious to get it over with, unbelievable that I am going thru again. I really don't feel sorry for myself for having to go thru this. There's a reason... I just want to get rid of the nasal tubes.
Fri., March 27, 1998
I still feel off. My stomach hurts. I know that I am just stressing out over the surgery. Nothing new.
Sat., March 28, 1998
The following is a post that I sent to two listservs.
Reality time... I just got my approval in the mail today for the surgery on April 7th. I am impressed because PS went to the medical director for the approval. :-) Too cool :-)
Here's the procedures I am having done on the 7th... Mycutaneous flaps - flap that will be attached from the fold of my left cheek to my columella (that will be released two to three weeks after the 7th) Rhiniplasty - Raising the tip and some other work Secondary reconstruction of the nares - More work on nostrils.
I guess I should go get my labwork done before Friday.
I got the name of a new condition - PSS - Pre-surgery Syndrome.
I am vegging out a lot these days so if you instant message me and I don't respond, I will be back at the computer soon.
Oh yeah the weird person I am.. I scanned my nasal tubes to show ya all what they look like. The tubes appear larger in the picture than they actually are (something like 30% larger). It gives you an idea of what kind of tubes I use and how long they are.
Sun., March 29, 1998
Another day of feeling stressed out... I just want to get the surgeries done and over with at this point!! I want to feel good again.
Ally is still sick. :-( I hope none of us catches it.. She was here on Saturday but I was not around her that much. I don't want a surgery cancellation because of sickness.
I am sooo tired of being in surgery mode. It seems like ever since I've been on the listserv that I've been in surgery mode.. When I first signed onto the list, I had just had surgery two weeks before. And it seems like I've had one procedure after another.
I just want to get past my surgeries and get on with life.
Mon., March 30, 1998
I am still feeling lousy. I am definitely stressing. Nothing new. :-(
I've decided to finish up Kristi's Place. My goal is to have it done by tomorrow night.
A week from tonight I will be eating a Totino's Party Pizza. Pizza's my GOOD LUCK piece whenever I have surgery.
Tues., March 31, 1998
ONE WEEK FROM NOW!! OMG!! I am definitely tripping out.
I finally got around to calling Kaiser to schedule my labwork. My appt. is tomorrow at 11:50 AM. Am I looking forward to getting stuck?? NO
It is sooo weird how people tell me to cry or scream.. Why?? I don't feel the need to.. I did that in my younger days. I just wanna stress. LOL Most of all, I just wanna be left alone to deal with my feelings on my own. I don't like to be told how to feel. I deal with the surgery stuff on my own. No wonder I hate posting or talking about my feelings about surgery.
How do I really feel?? First of all, nervous. Geez anyone is nervous about having surgery.. IT'S A FACT OF LIFE. Second of all, anxious to get both surgeries over with. (I like what Steve said to me Sunday night on IM - I just want to get on with life.) I am starting to feel a slight sense of peace.. I know that things will go smoothly. (At least I hope they do.) Going back to St. Luke's will be good because I will be familiar with the procedures. I am not afraid.
It finally dawned on me.. I haven't had any weird dreams about having surgery. Maybe I have found my inner peace. I don't know.Wed., April 1, 1998
Six days and counting
I got up and went to Kaiser for my bloodwork. It wasn't bad. No bruise YAY :-) I just hope that the lab faxes the results to the clinci on Monday. Or else I will get a call from Brenda. LOL
After I got my bloodwork done, I went and treated myself.. I bought some V.C. Andrews novels and some tennis shoes. I have to go get my haircut later.. wanna look all nice for my surgery on Tues.
My post-surgery goal: Looking forward to John and Gisela's visit over Memorial Day weekend!!!!
It finally dawned on me.. I have handled all the details with my upcoming surgeries. I am sooo proud of myself. My mom has taught me well. :-)
I just want to feel good again!!!!! Too much worrying about my surgery. :-(
Thurs., April 2, 1998
Five days and counting
I had a brief chat with listowner.. I like what she said.. People think that as many times as you've been thru surgery, that it should be a cakewalk. That is so far from the truth. And many people never know the right thing to say. I rather people keep their mouths shut if they are just gonna say something stupid like "You don't need the support. You've been there done that sooo many times." Or "You are an expert at this." Well, geez, can't I have any feelings??
Fri., April 3, 1998
Four days and counting.
Sat., April 4, 1998
Three days and counting.
Sun., April 5, 1998
Posted the following to two listservs:
Hi,
I think that I am ready for Tuesday. Two days and counting til my 35th trip to the OR. I've spent a lot of time mentally preparing myself for this surgery. Well I've had two months to get myself ready.
I actually have a program on my computer that is counting down the actual days, hours, minutes, and seconds til my NPO orders kick in and my surgery. OK I admit that I am strange. :-)
I have a lot of fun with my surgeries... Geez been there done that with a lot of serious sh*t. I've seen enough of that to last me a lifetime.
Now I have to see the humor of it all. You are probably wondering why I look for humor. Well when you've seen and experience stuff that makes you crazy, you start looking for the hurmorous stuff to all of this. Geez how many people do you know talk abut the birth of babies, webpages, and computers before they go to surgery?? LOL This happened to me back in Sept. LOL And I know that I am going to get into a conversation about websites and computers this time. ROTFL
I know ALL the risks associated with any surgery. Been there done that deal. When I read the op permit, I read what's gonna be done and make sure my name is on the piece of paper.
I sure as heck don't need anyone to explain to me what's gonna happen because I've been there done that many times.
My emotional state... I am NOT afraid. If I were afraid, I wouldn't be doing this. .. I am nervous tho. I am human too. :-) But I am starting to feel a sense of peace. By Tues. AM, you will never really know that I am about to have surgery because I will be laughing and kidding online. LOL
I have total faith in my PS.. If I didn't I wouldn't be going thru this again. I know that he will do the best he can. I've always expected my PS' do the best they can.. Nothing more, nothing less.
I am going to go out this evening and play the slots. YAY :-) I need a little fun before my surgery. :-)
Oh yeah my ISP has decided to do its conversion to 56k on the morning of my surgery between 4 and 6 AM.. I hope that I can get online that morning before surgery. Man I hope that the conversion goes real smoothly before I get up on Tuesday. LOL And yes I emailed my ISP and told them that the conversion couldn't have come at a worse time for me. LOL Why couldn't they have waited til Wed. AM?? LOL
ONE FINAL NOTE: If you really want so show your support for me, eat pizza for dinner tomorrow night. Pizza is my GOOD LUCK charm!!! All the old timers know the story. :-)
My parents, grandma, and I went to Station Casino. I played the 10 cent slots and only lost $10.
Monday, April 6, 1998
Tomorrow's the day...
I've had lots of IMs and emails the last couple of days.
Here are the following posts that I posted to two listservs:
Post One:
Tomorrow's the day.. I am waiting for a call to tell me what time to be there. Once I get that call, I can tell you what time I will be online in the morning.
Anyway... I actually slept about 10 hours last night. Not bad for me two nights before my surgery. I do NOT plan on doing the all-night thing tonight. LOL Besides my ISP will be down for two hours.
I am actually in a good mood today!!!
Post Two:
I can honestly say that I've handled everything for this round of surgeries.. What a major accomplishment for me. :-)
The last two nights at dinner, some of us have talked about surgery... I made the comment to my grandma about being ready.. And Mom, Grandma, and I got into a discussion about the last surgery... Mom and I told my grandma all about the delay last time.. I still laugh about the memory of PS telling us about the birth of his second child. LOL Last night, we talked about the kids... My mom watches my two youngest nieces.. They are being watched by various family members tomorrow. We talked about when surgery No. 2 might be scheduled. We all know that I've been thru this same surgery before so there's nothing to really talk about. We all hope that I get released Wed. AM. Surgery stuff has always been up for open discussion around here, even when I was very young.
I guess I should be quiet for now... I am still waiting for a time to be there tomorrow. LOL
Post Three:
Looks like tomorrow is a go...
Seriously speaking, my surgery has been scheduled for 11:15 AM Central Time. I have to be there at 9:15 AM. (I talked to Deloris finally!!)
If you want to catch me online in the morning, I would say it would be best to catch between 7:30 and 8:45 AM Central Time.
Oh yeah I knew that my freaking labs would have to be chased down. LOL Dumb lab at HMO!!!!!! (I guess Deloris tracked them down because she didn't call me back.)
I have Kristi's Place all updated. Arhinia is almost updated.
Both pages are updated for now. :-)
I had a good time chatting with many of my friends this evening. I can't count how many IMs I had. LOL I missed chatting with Kat because her cable modem was down. :-( But I did get to chat with Chris from Australia tho!
I had my pizza and at least six glasses of liquids. As of this writing, I was doing the NPO thing. I am hungry. LOL
This will be the last entry before surgery. See ya on the other side.. Recovery!!!!!!!!
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