I just got the results from the capsule endoscopy I had before the holidays and it looks I've finally got an answer to all of this. The last time I had the test, the camera got stuck in an area that was "tumor-like", but the test was inconclusive since they couldn't see much more. This time the camera got stuck in the same area, only the picture was more clear. The doctor was able to see a tumor in my small intestine (that's been missed on every other test I've had...small bowel series, etc.). So, I'm in the process of scheduling laparoscopic surgery to remove it, and then they'll send it to pathology to see if it's benign or malignant (they can't do any biopsies with the capsule endoscopy).

It looks like I'll be able to hold off on this until the semester's over, and have it done in January during my winter break. I talked briefly with my GI doc, and he's going to call my primary (who I already talked with), and they're going to get things going. It's so nice to finally have an answer, even though it's not really what I was hoping for. From what I've read, tumors in the small bowel are pretty rare - has anyone else here had this, or know anyone who has? When I was reading up on the capsule endoscopy, I came across a case study on a women a few years older then myself who also had a tumor in her small bowel found with this test. They removed it laparoscopically, but they also had her do a round of chemo just to be sure the tumor didn't return - even though it was benign. I know every case is different, and I'm really not one to dwell on "what if's", so I'll just wait and see what happens. Oh well, this is just one more step in getting my life back again.

amwood, i'm so glad you finally have some answers, even though its not what you were hoping for. You'll be in my prayers..i know what its like to feel so crappy and try to keep up with everything in school. God Bless ya! and let me know how ur doin'

So glad you're finally getting somewhere even if it's not quite where you'd like to go! That seemed to be the only possibility left as they checked you for everything else. You're so smart for keeping after them to figure this out! Even if there is the possibility of cancer you're jumping right on it and that's key. I wish you all the best--keep posting so we can check up on you too!

Quietstorm! Good to "see" you again! I'm assuming since we haven't seen you around in awhile that your levels are maintaining and you've been able to avoid the dreaded back room at the hematologist's office! I hope all is well and that you had a good holiday.

Not much is new here since my last post. It's driving me crazy trying to get a hold of the people I need to talk with about this. My GI doc talked with my primary yesterday, and apparently they went over some details of the surgery...I guess my GI doc isn't doing it (they have a team at CPMC that does the laparoscopic procedures), but he'll be there as they navigate through my intestines (fun stuff). I left him a message today letting him know that I have some questions, and that I'm not sure who I need to speak to in order to schedule everything. I found out all of this information from my primary's partner since my doctor doesn't work on Wednesdays. I also told her (my doctor's partner) that I'm not sure who I need to speak with, and that all I really care about right now is making sure I can schedule this for very early January so it will work with my semester break. It's just so frustrating when the world doesn't revolve around me! Seriously though, it's hard trying to get all of the info I need, knowing that this is a priority in my life, but not in their lives....although I'd like to think it is, at least with my primary since she's been working with me on this for awhile now.

Wow, sorry for venting...aside from the medical stuff and work, I'm also working on final projects, finals, and my thesis proposal right now so I think I'm just feeling a little overwhelmed with everything right now....but thanks for listening!

Well I think I'm over the excitement of finally having an answer to all of this - although I'd rather know what's going on then not. Now I'm still trying to get all the information I need, and am getting so frustrated trying to get a hold of the people I need to talk with.

I finally got my hands on the capsule endoscopy report so I could read for myself exactly what the doctor wrote up. Well, he described it as "a large, roundish, submucosal tumor"....at the time I read this, no one had mentioned anything to me about the size of the tumor (and I hadn't asked), so that was a little difficult to see. I asked what "submucosal" means (and also posted questions on a couple other boards on this site), and found out that the submucosal layer is the second layer of four layers in the small intestine. Apparently a tumor is considered to be caught at the earliest stages when it's only in the first layer - so mine has progressed to the second layer. They can't tell anything further then that with the capsule endoscopy, so they don't know if it's gone beyond the second layer, or if it's benign or malignant yet.

I also found out a little more about the surgery - yikes! I think I mentioned before that I know a few people who have had their gallbladders out laparoscopically and it wasn't that bad - three of them went home the same day, and only one had to stay the night. So I asked my doctor if this would be similar, and she said no, not really. Apparently once they start manuevering around inside your bowels, they stop working (as a reaction). So, after the surgery my bowels won't be working and I won't be able to eat anything until they start working again, and I won't be able to leave the hospital until I have a bowel movement. They're going to put in an NG tube (feeding tube) for a day or so, and then I'll get IV nutrition after that. My doctor said she thinks it'll be about 3 days that I'll be in the hospital, but that all really depends on what happens once they start the surgery and what they find when they get in there - so it could be longer. If the tumor is malignant they would have to do a resection of that portion of the bowels, so that would mean a little longer hospital stay. So that's the latest here....I'd really just like to get this over with ----- I'm not a person that will dwell on things, and sit around and think the worst, but there are times those thoughts enter my mind, so the sooner I can have this done, the better. I've had a couple of people (not in the medical community) tell me it's probably benign because I'm so young.....I really don't buy into that theory anymore since most people who get small bowel tumors (they're rare anyway - only 2% of all GI tumors are in the small bowel), are in their 70's or so.....so I'm already an exception to rule here....

Anyhow, Nik what's going on with you? Is the shot working - or doing what it's supposed to be doing? How are you doing with all of this? I'm sure it's a difficult thing to deal with. Do you know when your surgery will be? Have you found out if they can do it vaginally yet? Well I hope you're getting the answers and help you need - let us know how you're doing! Take care everyone,
Adrienne

Hi Adrienne,

Waiting is oen fo the hardest parts of all of this. I think the statistics are terrible, too. They are hardly ever on my side. It would be great to fit within them, but we usually don't so they are of very little comfort.

Have your small intestine operated on sounds like no fun. I will go through some of the same things, but not at all to the same extent. No feeding tube for me and I am allowed to leave without going to the bathroom. About how long will your recovery be? Will you be ready to go back to school and work bythe time next semester starts? I have read that I will be in the hospital a minimum of 2 days and will be in recovery for four to six weeks. I don't no anything new about my procedure at all because I haven't had any contact with my doc. Her office won't let me see her this month which really bugs me. So, I left her a voice mail when she was out of the office so I wouldn't catch her with a patient. I didn't ask her to call me back, but I never heard from her and I usually do. So, I am just in limbo.

And, I am still bleeding. Yesterday was a very heavy day and I was on the road. I bled all over my dad's truck seat on the way to a craft show and then I spent the day running to the bathroom. I really hope it stops soon. I guess everyone responds differently. Some respond right away, some respond about three weks after the first shot, some respond after the second shot and some enver do. It is hardly ever used just for bleeding, so it is hard to tell. If it isnt going to stop, I hope she will schedule me for the surgery sooner.

I am dealing OK, I guess. The hormone chaos has made me more emotional, but I'm not that emotional about my uterus. I am mostly just irritable with my nephew and my dad. My mom is pretty good with me, but sometimes I get grouchy and she gets mean right back. That just makes me fall apart. She thinks it is fun - tough love. I have joined another forum with other women going through hyterectomies. It has helped some.

I think I will be in a much better mood when the bleeding stops for at least a week. It had stopped for two days and then it started again and I think that was almost worse. The pain was worse and the bleeding felt even more gross.

I am sick and tired of being sick and tired. I'll definitely come back and write when I do start feeling better!

Oh Nik, I completely agree with you!! I'm soooo sick and tired of being sick and tired also! I can't wait until this all over. Hopefully the tumor will be benign and the surgery will be the end of this for me. I made an appointment to see my surgeon next Thursday - apparently he only sees people on Thursdays, and I talked with his office at the of the business day today (Monday) so of course this Thursday was booked. I told his assistant my situation with school, and wanting to have this done over semester break. She said that shouldn't be a problem at all, the only thing that would hold things up is if he wants to do more tests - which I know he doesn't. So, after I made this appointment I was talking with my boss at work and he asked when the surgery is - I didn't know you could schedule the consult and the surgery at the same time...appparently you can, and I've since found out that if they can't schedule the surgery, they can at least hold the room and the date until the surgeon confirms everything.

So, tomorrow morning I'm going to call first thing and get this scheduled, or at least on the books. I know that the girl I talked with didn't have all of my info/charts there yet, so hopefully that will help. Also, I talked with my primary today and asked her if this process should be taking so long (this was before I talked with the surgeon's office today), and she said no, and to let her know if I have problems getting things scheduled. At least I know that I have someone else that will advocate for this....besides myself! I'm stopping in her office tomorrow morning for labwork, so by that time I'll know if I need her help or not....

So that's the latest....I'm really more concerned about getting through finals right now, then I can concentrate on this stuff. Once I get it scheduled I'll be able to relax since I'll know that it's out of my hands and there's nothing more I can do. So Nik, have you found anything out regarding your surgery? Is the shot working yet? What would they do if the shot doesn't work? Do you know if they're doing a vaginal or abdominal hysterectomy? My mom had a vaginal hysterectomy in January of this year (ironically, I could be having my surgery exactly a year after hers). She was in the hospital for 3 days, and then home for 5 weeks from work, but she is on her feet a lot at work so that was a factor in her staying home longer. I hope you're getting the answers you need....I completely understand the frustration of all of this, and the need to get things moving so you can begin to get your life back! I have a hard time remembering/accepting that these doctors have other patients, and that the world does not revolve around me and my health problems....because so much of my life has changed because of what's been going this past year, I just want to scream at them to GET MOVING AND FIX THIS!!!

So, do you have plans for the holidays? Hopefully we'll both be able to get up the energy to do some serious shopping soon! I'm still planning on spending Christmas in Tahoe with my dad and sisters (and a couple others) from Dec. 19-26....I know there's snow, so hopefully I'll be able to ski. Somehow, I think I'm in denial about not being able to ski, since my doctor told me last week that as things stood with my last set of labs there was absolutely no way I could ski. I'm still hoping there's room to negotiate a half ski day here and there...we'll see. Well I suppose I'd better stop now before I really go off on a tangent :)

Take care,
Adrienne

Ok, I'm feeling a little better about this....I talked with my primary this morning and told her what was going on. She didn't think they'd schedule the surgery without me actually meeting with the surgeon first, but she said she'd call over to his office and try and move up my appointment with him. She called me a couple of hours ago and said that she moved my appointment up to - get this - this Friday at 1:30! So, I guess this guy is around on days other than Thursdays...somehow I'm not surprised. I thanked her for her help on this, and she said didn't mind doing it all, but she wished she didn't have to ---- apparently this is the third time this week she's had to call and get an appointment moved up for a patient! At least we're both frustrated with those whole stupid process.

So, I'll know so much more after this Friday and I'll schedule the surgery that day as well....his office said there wouldn't be problem scheduling it asap, since this is obviously not an elective procedure - and I know my primary laid into them about that as well, although in all fairness when I talked with his office yesterday they didn't have my charts or info yet. So, I'll let you guys know what happens Friday, and then I can relax because it will all truly be out of my hands at that point ~
Adrienne

Amwood, I had a similar experience, but I have crohn's disease. A SBFT also revealed a tumor like mass in my small intestine involving the secum (where the small intestine joins the large) Doctor's thought it may be cancer but when the surgeon went in, he found a mass of scar tissue obstructing the bowel. I had a foot of small intestine removed, along with the secum due to the crohn's. Pathology report came back with no cancer, thank God! I know my circumstances are somewhat different, but I understand that it's not easy having to go through the waiting and wondering period. Do you have a carciniod tumor in your small bowel? They are common to the small intestine and rectum. They are small and almost always benign. You said that you will be having laparoscopic surgery, your lucky! I couldn't have this type of surgery, because they were dealing with a larger area. I wish you well, with good results and a speedy recovery.

Good grief--I wrote a big babbling paragraph only to have it disappear when I minimized it 'cause my boss popped in the doorway!! I doubt she'd mind my taking a couple of minutes to "play around" but I felt like a sneak! Sounds like everyone is coping. Myself included but I'm not dealing with any big issues. Nik, I can only imagine your frustration and Adreinne I can empathize with your fears. I feel very fortunate--tired but fortunate! I saw my hematologist today and he's as puzzled as ever. My blood levels have been sinking slowly and my iron level is almost non existant. I don't, however, experience any sudden drops which (along with multiple negative tests) has led him to believe it's an absorption problem of some sort. None of the GI tests could confirm anything so it just seems to be a quirk in the system. Sure wouldn't be my only quirk!! The doc really doesn't want to go back to regular IV iron because I started to react to the second drug too. I got really sick last time and it scared the snot out of me. Iron really seems to be my kryptonite!! BUT, you can't make blood without it. Hopefully once you guys get the problem fixed you'll have loads of extra blood and energy!! Get out those skis!!

QS, I'm sorry to hear they still don't quite know what to do....since they don't want to give you the IV iron, what is the other option? I'm assuming since you have an absorption problem, the oral supplements don't do the trick?

Dorri, thanks for your reply....I don't know what type of tumor it is yet, mine was discovered on the capsule video endoscopy and they can't do biopsies on that test - you just swallow the camera and it moves through your digestive system (specifically designed to fit perfectly in the small bowel), and then the camera is "released" in a normal bowel movement. So, I really won't know until the surgery. I'm so grateful they are able to do this laparoscopically, although I've been told that things can change once they get in there. Can you tell me a little more about your surgery experience with this? I know we'll be different, in that mine will be much easier regarding the incisions, but I was told that once they start working in your bowels, they stop working for a period of time. And, they're going to have to do some "exploratory" stuff, since they only have a ballpark idea as to where the tumor is (none of this showed up on the small bowel series test I had), and they still didn't see a direct source of bleeding with the capsule endoscopy. So, I'm guessing they're going to be in there quite a bit - it sure doesn't sound good for my bowels!

What was your experience with this? How long did it take for things to start working again? Did you feel any pain in the area they removed the tumor? I don't know if there's a difference in that as far as size of the tumor goes, but from what my doctor said, mine is large...so I'm just wondering if I'll feel anything in that area? I know I'll have all of these questions answered on Friday when I meet with the surgeon....I suppose this is why they say patience is a virtue....

Hey Adrienne,

I really hope you come home witha surgery date today. How did your visit go? It is so interesting that receptionists can only schedule you for certain times but nurses and other doctors can get you in much sooner. I am glad you got in.

Tell me all of the details of your surgery and your recovery.

I'm still baking and beading. Our last craft show is tomorrow. I tried a few new things just for fun. I added chile powder to our fudge and I made chile chocolate cookies. The problem is that I don't like chocolate and my mom doesn't like red chile. So, we can't really do any taste tests or improvements. I bet some of it will sell tomorrow. And, we finally perfected out peanut butter fudge. We made it twice and it sugared and now we got it right. I wanted to make some diabetic treats, but I couldn't get anyone to give me any good recipes and the ones I found on-line looked kind of sketch. They all have white sugar and white flour. I know those aren't the best alternatives.

At our show two weeks ago, I sold several of my beaded ornaments and a gingerbread house and a few other things. My mom gave me most of the profits from that show and I was able to go Christmas shopping. I spent most of it on her. I had already started making a cookbook for my sister and I got a patter to bead a flat ornament that has a wolf howling at the moon. She would love more material things, but my hand made gifts will have to do. And, my grandfather has been pouring money into my bank account so I ordered him a Pendleton shirt. It has been shipped and will be under our tree soon. Thank goodness. It felt good to have a little money to spend. And, it is nice to be done with everything early. I can't believe Christmas is less than two weeks away. That means I am that much closer to my surgery! Woohoo!

The only problem is that my mom had me order my dad a notebook from Dell. I had a lot of trouble ordering it on-line, so I called their phone reps. The guy couldn't find the order and when he did it was alpha0numeric and was only supposed to be numeric. So, he talked to his supervisors and deleted the order. We spent a long time on the phone and got everything ordered again just like I wanted it. Ugh! It took about seven hours total. But, then, I started getting shipping confirmations for order numbers that were different than what he gave me. And, I got more order numbers in the inbox today. I think it has all been ordered three times and one thing has already shipped in duplicate. One of the perks of ordering was free shipping and now I will have to ship things back to Dell because they are sending too many!

At least I have new things to obsess about for a moment. My bleeding has slowed. Maybe it will stop this time. No hot flashes. Only occasional nausea. And, I am slightly dizzy and losing a lot of hair, but that could just be me or it could be the anemia.

How are you?

Oh, and it is good to see you again Quiet Storm. The hematologist I saw said there is a new form of liquid iron. he said I would have to get it three times a week if six iron pills a day didn't do the trick. Have you already tried that one? Isn't there a way to diagnose an absorption problem or is it a diagnosis of exclusion when nothing else works?

Take care, girls!

Nik

Hmm, chocolate and chili powder...sounds interesting. Actually, yesterday as I was sitting in the waiting room I was reading a magazine (I'm sure you can all empathize!) that was talking about a chef that makes chocolates with some unusual pairings of different foods - supposedly although the pairings were "strange", the chocolates were awesome! I'm sure yours turned out yummy too! I'm glad to hear that your craft shows went well...do you guys do craft shows in the spring too? A friend of mine used to do the same thing with her mom, and they seemed to do a few shows a season, but I'm not sure.

I can completely relate to wanting to have some of your own money for holiday shopping (or just for yourself!). Although I'm working right now, I go to school full time and only work part time - I work 20 hours a week on campus researching and analyzing public policy/legislation, but since my job is a graduate reseach position, I'm paid hourly and am already being paid the max that they can pay a student researcher. And, I've had to take some time off recently between the GI tests and not feeling well, and I'm off for the holidays (since campus is closed), and now it looks like I'm taking the entire month of January off....so I definitely fall into the "starving student" category right now! My dad felt sorry for me the other day and offered to give me money so I can do some Christmas shopping - my parents haven't done that since I started working way back in high school....I can't wait until this is all over, I'm finished with my MPA, I have a normal job with a regular salary, and I'm a normal healthy person! Is that too much to want......

Well I met with my surgeon yesterday and I really liked him. He has a lot of experience doing laparoscopic work in the GI system, particularly in the small bowel. I didn't learn too much more about the tumor itself yesterday, and he actually had me get a CT scan after I met with him - to give him a better idea of where it's located within the small bowel, and the size, etc. But, I did get a better sense of the surgery itself and what would happen --- he said he's going to do a resection of the area the tumor is in. I originally thought he would just remove the tumor and not take out that part of my small intestine, but apparently not. I know we all have about 22 feet of small intestine, so I suppose I can spare a foot or so, but the thought of someone cutting out part of my small bowel and then reconnecting the remaining intestine just doesn't sound that good. He's going to be doing the procedure laparoscopically, but at some point may have to make a small incision. And, my bowels will stop working during and after this surgery, but the amount of time it takes for them to "restart" depends on how much extra work they'll have to do....he said it wouldn't be that long if they know where the tumor is and they can just go in, do the resection and get out. We'll see....

The length of time I'll be in the hospital depends on how much exploratory work he has to do - hopefully the CT scan will show where exactly this is and they won't have to work off of a "ballpark" guess based on the capsule video. I'll probably be there from 4-7 days, depending on what's done. I won't know the results of the biopsy for 2-3 days, but he said they can usually tell whether it's benign or malignant once they remove it. Once my bowels start working, I can eat liquids, and then eventually work my way up to soft foods, and then to real food.

I'm having the surgery on Jan. 7 - hopefully that will give me enough time to recover and start school the end of January. He said I'd probably be on some decent pain meds for about a week, and I'd be pretty wiped out for about 3 weeks at least (which will put me right at the beginning of school), so we'll see. I didn't want to do this any sooner since I'm in finals right now, and then right after finals are over I'm spending the week in Tahoe....I didn't want to give up my entire winter break for this! It may be about 4-5 weeks or so before I can get back on the treadmill again, or the crosstrainer....I'm counting down the days.....I've already talked with my older sister, who loves to cook and is a great cook, and she's going to make up some food for me for when I get home, so I don't have to do any cooking. She's already given me some "menu" items to choose from....butternut squash soup, creme brule frozen yogurt, crepes....yum!

So that's about all the info I have right now, and I'll get the results of the CT scan Monday (I had it done early evening Friday) so I'll know more then. Yesterday turned out to be much longer than I had thought....my appointment was for 10am and I was told it would take about 30 minutes or so. Well, after my appointment, I had to have blood drawn, then I had to register for the CT scan, then I had to drink that wonderful flavored chalky shake (900 ml of it!!), and since I was an add-on for the CT scan, I had to wait for them to fit me into their schedule. So, left the hospital around 4:30....I had eaten breakfast at 6:30 that morning and wasn't able to eat or drink until after the CT, which was 4:30....a very long day! And, since I'm in the middle of finals right now, I had planned on writing a paper in the afternoon yesterday since I took the day off work. Needless to say, I didn't get any schoolwork done, and I was so exhausted I went to bed at 8:30 last night!

Ok, well I know this post is probably just about one of the longest I've ever posted so I'll stop for now! Nik, are you going to get a surgery date in January when you see your doc? Can they schedule you now or do you have to wait? And if you have to wait, what are they waiting for? Take care and enjoy your chili chocolates!

Adrienne

Hey Adrienne,

I just wanted to pop in and say hello. How are your levels these days? I got my second Lupron shot and thought about asking them to check, but I don't really care. I'm tired, but I'm also a little more active, so I know my levels are fine.

I've been a little busy and just kinda ho-hum. It is so hard to have Christmas spirit when I just don't have enough energy. I get so irritable from trying to do the things I always do and trying to be nice. But, I still keep doing...

I'm sure things are about the same with you. Are your finals over? When do you head to Tahoe or are you already gone?

"I can't wait until this is all over, I'm finished with my MPA, I have a normal job with a regular salary, and I'm a normal healthy person! Is that too much to want......"

I want very similar thing so I really hope it isn't too much to ask...Let's hope we've been good this year and Santa delivers!

Happy holidays to all of my pale friends!

Nik

Sounds like all of us could use a stocking stuffed with iron as opposed to the usual coal!! :jester:

I hope everyone had a wonderful holiday - and like QS said, instead of that lump of coal hopefully you got some iron instead! I just got back from a wonderful week in Tahoe with my dad, sisters, and sister's fiancee. And, it was my first white Christmas (we don't get a lot of snow in the SF Bay Area :) ). We had an amazing time, and of course the scenery was beautiful...I wasn't able to ski (doctors orders), so while everyone else was at Squaw enjoying the fresh powder and skiing on my favorite runs, I went and got a massage and facial and tried to enjoy a relaxing day. I'm sure some of you know what I mean when I say I had almost too much time on my hands....I went from having absolutely no time at all during the weeks before leaving for Tahoe, and went to having tons of time and not knowing what to do with myself! But, don't get me wrong, it was great to have a week off - from everything - school, work, and doctor's poking at me and drawing blood all the time!

Anyhow, I just wanted to stop by and say happy holidays to everyone! I hope you're all doing good - Nik, I know you have an appointment coming up in January - is that when you'll set your surgery date? Mine is coming up fast...it's about a week and a half away on Jan 7. Thankfully the time has been changed from 3:30pm to 7:30am - I wasn't looking forward to sitting around all day not being able to eat or drink and just dwelling on things as I waited....

Well, take care eveyone - Happy Holidays and have a Happy New Year :bouncing:

Adrienne

Hi Adrienne,

I am going to miss you while you are in the hospital. Maybe you can convince your friend who drove you for your camera procedure to join Heathboards and keep us all posted. I was thinking about how long you may be gone and how long it will be before you will want to sit here and write and I decided I better write while I can.

You know, I did have a "Santa" deliver a stocking full of iron for Christmas. I just amde that connection. The clinic where I was getting my iron isn't going to carry it anymore and they are just trying to get rid of it. At six a day, I go through the 100 pills pretty quickly (although I have had a mental block about tkaing them lately - I just haven't wanted to). One of the receptionists there is a good friend of my cousin that we do craft fairs with. She has bought a lot of our beads and we always bring extra goodies and food to share with her when she visits our booths. She knew how much I needed the iron so she had the gyn receptionist sneak out a few bottles for her and she gave them to me. What a saint!

No news on my surgery date. I tried to convince the nurse that I need to be scheduled before the calendar gets full and she said that they will just give me another shot if they can't get me scheduled for Feb. That si nto an option and it really bugged me that she thinks it would be! I am so happy you got the earlier admit time. I hope I can have that, too, but I was pleased that I was allowed to have juice when my surgery was in the afternoon. That helped. I guess you won't be able to since I imagine you will have a major bowel prep. Will your surgery be in the city, too? I am starting to worry that they will keep me longer because of my long drive home.

I just can't wait for this all to be over. I am so jealous of you, but I am happy that you got to schedule it when it was convenient for you. Write soon.

Nicole

Hey Nik, I'm glad you had good holiday...and that's great that the "iron fairy" paid a visit to you :) This is a random question, but do you go by Nicole, Nik, Nikki? I was just wondering....

Well I saw my primary doctor yesterday and had labwork and an EKG done. I know they normally do that stuff when you pre-register for surgery, but she wanted to get it done as soon as possible so that if there was a problem with anything they can try and fix it so I won't have to postpone anything. My labwork came back with no huge suprises....I'm anemic, but at least my hemoglobin has been maintaining the 9's lately...hopefully it'll stay there through next week. But, I have to see my cardiologist on Monday to have - get this - a stress test done before the surgery. I found out that I need cardiac clearance to go under the general anasethesia, which I think is due to the combination of the anemia-related heart murmur and the abnormal EKG's I've had in the past due to eating disorder related issues. This should be interesting...I'm probably in the worst physical shape I've ever been in my life...I haven't been to the gym in a LONG time, and now they want to stick me (an anemic person) on a treadmill to run....yikes!

But, aside from all of that, everything else is going good. I'm glad that I've a primary doctor that is on top of everything, and is willing to take care of things before they become a problem, and before someone tells me I have to postpone the surgery. I really hope you can get a January surgery date - I can't believe they would put it off until February! I'm sure they have room in January, and it sounds like you know how to be quite persistant, so keep it up!! Let me know how you're doing with everything - is the Lupron working? Is your hemoglobin going up? Are you feeling the side effects of the shot, i.e. menopause? This may sound weird, but I'm glad that we're in the same boat...I know our anemia is caused by two different things, but we're the same age and we have to deal with medical tests and procedures that most people twice our age haven't even had to deal with yet! Here I am, 27 years old and having a cardiac stress test! I feel like I'm not alone in all of this, and that I'm not some sort of medical anomaly - well, ok, maybe I am, but at least there are others here with me!

After my surgery I'm having my sister call some people for me (I thought it was really sweet that my boss asked if someone in my family could call into the office and let them know how it went), so I'll see if she can get online and post something really quick. But, I might have someone bring my laptop to the hospital since I have a wireless internet connection on it, and the hospital I'm having this done at (CPMC in San Francisco) is a great facility and should have someplace where I can get online. Maybe I'm being a little too optimistic thinking I'll have the energy and brainpower to actually write a coherant message while I'm there, but we'll see :)

Do you have any new year's plans? I don't really...I'll probably hang out with some friends, but I don't think I'll make it to midnight. Oh well. I stayed up well past midnight last new year's and had a great time - I was with friends in San Diego and we had a murder mystery party, so I guess I'll take this year off. I really hope that 2004 will bring a new, healthy start for us, and that we'll be able to get on with living our lives the way we'd like to!

Happy New Year everyone! :jester:

Adrienne

Hey Adrienne,

I usually go by Nicole. Some relatives and friends from college remember me as Nikki. That was my name when I was a DJ. On here, Nik comes up more since it is the second half of my screen name. Take your pick.

You know, I have heard of women getting their surgeries denied by their insurance because the pre=op was done too far in advance. You might check into that when you do your hospital admission. I would hate for you to get delayed. It's still good that your primary is interested in correcting any problems ahead of time. I have also heard of surgeries getting delayed because of problems with the pre-op stuff.

Have they talked to you at all about blood loss during your procedure? It seems a little scary to go in at a 9, but they really can't do anything else since they are going in to try to correct the anemia. Are they planning on having to transfuse you?

The stress test doesn't sound like any fun. I can just feel the tightness in my test as I imagine it. We're probably in about the same shape right now. Hey, how long will it be before you can really work out after surgery? For me, it will be about six weeks. Since I am still at least six weeks from surery, that is a very long time. All this anemia and resting really can't be good for the heart! I know it is bad for the soul. I am hoping to start getting into shape now that the bleeding has slowed, but then I will have to start all over again in April. Yet another reason why they can't delay me another month! I still have to figure out how to get that message through to them.

You know, I have never had an EKG and the only person who has listened to my heart this year was the hematologist. I really wish he could have treated me for something. He is an incredible doc. I sure hope that I didn't end up having anything abnormal come up on my EKG. I am guessing that my pre-op will be the day before the surgery since I live so far from the hospital. That's the way they did it for my D&C.

Oh, by the way, I wandered around and read what people had told you about small bowel tumors. I actually learned a lot about my own dysplasia from another perspective. It is so bizarre how you and I have been through so many similar things at such a young age. I can't wait to have this all behind us. We'll have to come back and check in when it's all over. Hey, have you still been having trouble with throwing up? Is that a possible symptom of the tumor?

"I really hope you can get a January surgery date - I can't believe they would put it off until February!"

Actually, the nurse is talking about March now. I know a lot of OR's do their scheduling way in advance. For my D&C, I had to schedule two weeks in advance and I barely got in. I almost had to wait another week. They only let emergencies schedule sooner and mine is nowhere near a medical emergency now. Financial, emotional, physical...yeah. But, I won't see the doc for two more weeks and then February will only be two weeks away. That's also really unfair to my family because they need to schedule time off work.

I haven't had a CBC since November. I feel better most days, but I still get the little blackouts when I stand up sometimes and I still get really dizzy. Plus, I am sleeping A LOT! I think some of the dizziness may be from the Lupron. It has helped the bleeding a lot and I haven't had any terribel side effects. I notice little things here and there, but proabbly just because I know what side effects to expect. It is starting to make me feel well, but I know that I am not. I will probably be feeling wonderful by the time I finally go to the hospital and then I will be stuck in bed for weeks again. The calm before the storm, I guess.

This may sound weird, but I'm glad that we're in the same boat...I know our anemia is caused by two different things, but we're the same age and we have to deal with medical tests and procedures that most people twice our age haven't even had to deal with yet! Here I am, 27 years old and having a cardiac stress test!"

It doesn't sourd weird to me at all because I feel exactly the same way. I guess this has been part of a big lesson in empathy.

"Maybe I'm being a little too optimistic thinking I'll have the energy and brainpower to actually write a coherant message while I'm there, but we'll see :)"

It may be optimistic, but it might happen. If you have to stay and wait for your insides to wake up, you may need the distraction. We got my dad a a laptop for Christmas. Maybe he will let us use it in the hospital, too. I can make my mom type. That will only happen if he isn't racing that week, which is a possibility since the scheduling has been so slow. In a way, I hope he does go, but I guess it might be nice for my mom to have company in her room at night.

I was asleep on the couch at ten on New Year's Eve, but I woke up at midnight. Maybe that's a sign that I won't be so sleepy this year! I did have a date (sort of ) earlier this week. Actually, I guess it could count as two. We went to breakfast and then we went to coffee later in the day. I'm not really interested in him at all, but it was still a little fun to get out. My libido has been waking up lately and the timing couldn't be worse. I keep reminiscing about my non-ex in Chicago. Did I ever tell you about him? What a sordid tale. He had a girlfriend in San Francisco.

Ah, I digress. I sure hope you check in before you go into the hospital. Let me know how the stress test goes.

Nicole

Hey Nicole - I've actually had a couple of friends named Nicole and they were amazing people - I like that name. So you were a DJ....that must have been so much fun! Was that back when you were in college? An interesting DJ story just came to mind...a few years ago I went to my boyfriend's sisters wedding (he's now my ex), and one of my ex-boyfriends was the DJ at the wedding! I hadn't seen him in years and we spent some time catching up....needless to say, my boyfriend's family thought I was hitting on the DJ! That couldn't have been farther from the truth, but looking back I can see how that must have looked to them....ah, anyway, interesting tangent...

As far as the pre-registering stuff goes, the hospital said that anything done in the two weeks before surgery would be fine. That worries me a little with my labwork, since it's been known to drop quite a bit in a two week period of time (sometimes just in one week!). I talked with my doctors about being anemic when going into surgery and they weren't too worried about it. There's minimal blood loss with the laparoscopic surgeries, but I might loss some blood with the small incision and the resection....I talked with them about transfusions since if they even think I might need one, I'd rather have someone from my family donate asap...transfusions REALLY freak me out. I actually told them to use the lowest threshold possible for a transfusion and that I really don't want one unless it's absolutely necessary....I don't think this will be a problem though, unless things don't go as planned.

I would feel a lot better about this if I was going into this in good health. The anemia aside, my WBC was also quite low on my last CBC, and the cardiac stuff going on worries me also. Also, I'm so out of shape right now, I know that can't be good either....it's so strange because I still mentally think of myself as a "healthy" person...I've always been active, maintained a healthy diet (anorexia aside), and love running...it's hard to think of myself as being 27 and truly not healthy right now - but I'm sure I'll see how unhealthy I am when I get on the treadmill on Monday and will be winded after the first 30 seconds! I agree with you that all of this anemia and resting isn't be good for the soul! I just wanted to cry the other day...I was at the mall exchanging some Christmas gifts and I actually had to leave, go home and take a nap, and then go back and finish my shopping! I was so frustrated that my body just couldn't do what I wanted it to! But, at least right now my only symptom is exhaustion....I haven't been throwing up much lately...actually, I haven't since before I left for Tahoe so that's been wonderful! I found out that throwing up is a possible symptom of a tumor, so I'm assuming that's the cause of it. Actually, since I haven't been getting sick and with all the holiday food around, I've put on a couple of pounds these past two weeks. I know they'd like me gain a little more weight, but I'd rather gain the weight in a healthy way - through eating and exercising - and not from sitting around and sleeping!

You know, I can't believe that after all this time, no one has ever listened to your heart! I always thought that was a standard thing doctors do, regardless of why you're there to see them! But, especially being so anemic, and the fact that severe anemia can lead to things like heart murmurs....as I found out. Well I guess every doctor really is different. I just can't believe they'd put off your surgery until March! That's ridiculous...now that they've temporarily stopped your bleeding, they're going to try and push your surgery back...dealing with the medical community is so frustrating!! You'll have to let me know how your appointment goes, and when your big day is going to be. I'll definitely let you know how everything goes for me next week, and I want to know how things go for you...it'll be great when we're both able to get on with living and doing what we love! We're almost there....

I've got a lot of time on my hands right now (as you can see by the length of this post!)...I'm on winter break right now from school, my office is closed for the week for the holiday, and I'm not allowed to do anything really active that would jeopordize my surgery....I could be working on my thesis, but this is what I've been doing instead :) So, you had a date the other day...how exciting! It's been so long since I've gone out with anyone I'm interested in! My older sister is getting married next year on Sept. 17...she's turning 30 on Sept. 9 so I know that there's still hope I'll find the man of my dreams even though I'm starting to feel really old (as far as dating goes)! Hopefully the new year will bring some good men into my life!!! Actually, I haven't been going out as much as I used to (mostly due to lack of energy), so I know that once I'm feeling better I'll get back out there and check out the prospects...So, your ex in SF sounds like an interesting story....I hope you don't have a bad impression of SF because of him...it really is a great city! I don't think I'll be moving anytime soon, so if you're ever in California....

Well I'd better stop here before I really start rambling! I hope everyone here is going well.....take care :wave:

Adrienne

Hey Adrienne, :wave:

How are you? Are you nervous? Any big plans before you go to the hospital? How have you been entertaining yourself - aside from the internet?

Lots of questions. Ooh, and one more. What kind of prep do you have to do for the surgery?

Nothing new going on here. I havent' heard from the guy I had breakfast with. He lives in Colorado. It may be my turn to write back, but I don't really want to encourage him. It was just nice to get out for one day.

I was thinking about what it would be like if you and I could have these conversations while taking short walks to get out and get the blood flowing. The more I thought about it, I realized that you and I wouldn't have enough blood to be able to walk and carry on a real conversation at the same time.

I started a belly dancing class on Sundays - did I tell you that? It lasts for two hours which is a pretty long time so I usually rest for most of the second hour. But, it feels really good and may be what is causing my libido to come to life in the middle of my chemical menopause. It's kinda cool to get together with a group of women to be feminine and improve our bodies. I don't have many girlfriends. Anyways, the instructor is a nurse and she said that she can tell that my endurance has improved in the last few weeks. That felt pretty good. That and the fact that I can do almost everything the advanced girls do and I often catch them watching me.

Funny that I mentioned the non-ex the other day (I call him that because we were a couple for a long time, but were too scared to commit). He called that same day, but I missed his call. My dog ran away and I was out looking for her when he tried. I was so bummed. How often am I home alone and then I leave for ten minutes. I have resisted the urge to call or write back immediately. We haven't spoken since I wrote to him about my hysterectomy. His response was very sincere and was the one that made me emotional about it all. He has been saying he would call all this time but was busy with the end of the quarter and with family. He's a poet, a teacher, and a PhD candidate in Chicago. I wonder if I will ever get over him...

Wow, that was all very tangential.

I hope you can get out and do something fun today. You did the spa thing in Tahoe. What else? I am thinking of a pedicure before I go to the hopsital. I'm also going to bake some goodies for the hospital staff and some stuff that I can freeze for my recovery.

Ooh, today's your stress test. I can't wait to hear all the breathless details!

Nicole

Hey Nicole ~ well I made it through the stress test - yikes! It wasn't fun...I definitely wouldn't recommend it while you're anemic! Actually, it was probably one of the most pathetic stress tests they've ever done on a 27 year old....I didn't even have to run to get my heart rate up to where they wanted it - I just walked sort of fast at an incline for not even 10 minutes....it's frustrating because I ran track in high school, and have played soccer for as long as I can remember, and have always loved to run...so it was a little depressing to see just how out of shape I am right now. But, on the bright side the cardiologist cleared me for the surgery, so it looks like everything's all set.

I pre-registered today at the hospital in SF. It went really quickly since my primary doc had already done the labwork and EKG they needed, so all I had to do was go over stuff with the nurse. It definitely seemed more "real" while I was there. I realized that in less than two days this will all be over - I'm excited to get on with my life (or to find out if this is just the beginning of what I'll have to do), but I'm also a little nervous about everything. I was really surprised (but relieved) to find out that I don't have to do any sort of prep for this at all...just no food or drinks after midnight. They said that people having colon/large bowel surgery have a prep and clear liquid diet, but not for the small bowel. I don't know....I think I'm just going to have soup or something for dinner tomorrow night....I'll save the big celebratory dinner for after :)

Lately I've just been hanging out with friends to pass the time. I was supposed to go into work today, but I had the cardiology and pre-registration appointments instead. But, I'm going in tomorrow so that will help pass the time. And, one of my friends coaches high school basketball so I think I'll go to her game tomorrow night, and then I'm going to paint my toes (because you just have to paint your toes before going in the hospital :) ). And, I just talked with one of my good friends from San Diego (I don't know if I mentioned that I lived down there for a few years), and a couple of them are flying up on Saturday and leaving Sunday just to visit me :) I was just in one of their weddings in September, so she's going to bring her wedding and honeymoon albums with her...I thought it was great that they were willing to fly up just to see me for a day, even if I'm a little out of it on some good drugs! So, between my SD friends and my friends and family in the bay area I think I'll have enough entertainment while I'm in the hospital...probably a little too much since I tend to get a little grumpy when I'm not feeling well....

Hey, that belly dancing class sounds cool! My sister just took an Afro-Brazilian dance class and she said it was a great cardio workout. One of my friends teaches adult jazz classes and I've always wanted to take a class from her, but I've known her since the second grade and for some reason I think I would just end up laughing the whole time....That's great that you're building up your stamina again! I can't wait to get back into shape...I'm hoping to get in some spring skiing, and to play on the adult co-ed softball team I used to play with in the spring....

Oh, did you find your dog? Is there a lot of snow where you're at? And when is your appointment with your doctor? It sounds like you're able to be a little more active, so I'm assuming your hgb is doing ok/better? Well, I hope you're doing well....I'm sure I'll stop back in tomorrow since I'm on the computer all day at work! Take care,

Adrienne

Good luck tomorrow Adrienne!
I'm so busy wallowing in my own issues right now, I know it's selfish. Last year I volunteered to be a puppy raiser for The Seeing Eye (guide dogs for blind people.) Our family raised an indredible black lab who returned to Seeing Eye yesterday for harness training and eventual placement as a guide. My Prozac prescription ran out on me! No pain killers in the entire universe can subdue the ache that's settled in my chest. I keep reminding myself "he's just a dog" but truthfully he became my best friend. As part of the program he went EVERYWHERE with me. Everytime I look under my desk at work I burst into tears! How can one little dog leave behind such a great big empty??? We've volunteered to raise another as Hod was soooo much fun. I feel pretty confident in my ability to raise another I just feel really shaky about my ability to give another up.
Like I said right now I'm being really selfish!! I hope your surgery goes well. I'm thinking about you too Nicole. That "hurry up and wait" can be terribly frustrating. The medical profession by and large does not understand that we need to get on with our lives!!!

Oh QS, I can't imagine what it must feel like to give up your puppy. Ours has been here through most of my illnesses and procedures. I have been stuck at home so long that we are very close, but it is also causing her to act up a little. When she escaped the other day, I was pretty scared. I would hate to have to give her up because she is so close to me, but my family really can't afford to keep her if we can't get her to stay home. She left when I was here! Poor girl has been really confused by me being home and only getting out at unpredictable times.

It must take a lot of skill to train a Seeing Eye dog. Maybe you will be training one for me some day. My vision is another part of my health that is severely impaired, but it is holding up for now. How are you otherwise?

Adrienne, it sounds like you have some great friends. I have had some good ones, but I have always moved too far away from all of them. I am trying to use some of my mom's friends in case I need babysitters when I get home from the hospital. Everyone thinks my recovery will be really quick - I'm young and healthy, right? But, I am trying to prepare for the longest recovery.

I know what you mean about gaining weight the unhealthy way. It is terribly depressing to see the extra pounds right now. I was underweight for a long time and I keep wondering if weight is going to become an issue for me now the way they say it does as you get older. The longer I am anemic and the longer the weight stays on, it makes me think that it won't go away. But, I really think that I would be gaining real muscle weight if I could go back to living the way I want to. We can only hope!

I am so happy that you weren't too unhealthy for surgery. Even if it feels terrible all the way there, it's nice to get that clearance and have someone say that you are healthy enough. I sure hope the surgery is the last step for you. We'll be thinking of you! Enjoy your weekend with your friends and check in when you feel up to it!

Nik

P.S. What's on the menu for the big celebratory meal?

Hey ladies ~ Well today turned out to be much busier than I expected...both at work and once I got home. I don't have much time to write much, but I just wanted to stop by and say thanks to everyone for the encouragement :) It's been so wonderful to have a place like this as I've gone through this whole process. I'll let you know how it goes as soon as I can! QS, I'm sorry you had to give up your dog...I don't know if I'd be able to do that....but, hopefully you'll be able to start training anothe one soon! And Nicole, I hope your appointment goes well and that you can get a date scheduled for your surgery...and hopefully they can do it in February! Take care,

Adrienne

Hey there,

Busy is probably a good thing. I hope you were able to finish everything you needed to. By the way, I am so shocked that you don't have to do any bowel prep. I have read a few really funny stories about women who have had to do it. I kinda hope I don't have to either, though.

Are you gone already? I kinda figured you would be since you have to get to the hospital. Well, when you get back, you will know that you were in my thoughts this morning.

Nicole