A Very Long Overdue Update

I'm blaming the lack of updates on anesthesia.

• It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor.
• It has been 3 years and 4 months since I completed External beam radiation.
• It has been 3 years and 7 month (today) since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
• It has been approximately 10 weeks since my second resection, shunt insertion, and the start of a month of chaos.
• 3 weeks ago I had to have my shunt revised with 5 surgeries over 3 days.

On the good side, the shunt appears to be working now, there were no signs of the Staph infection this time around, and I seem to be healing fairly well. *KNock on wood*

Medically - I have had a second shunt inserted to help keep the cerebral spinal fluid from collecting on the brain or in my scalp. I have a VP shunt(basically a drain to drain the fluid from one place to another that goes from the right side of my brain to a reservoir in the right side of my abdomen. As well as a subgaleal(between the scalp and cranium) shunt that goes to the right side of my abdomen. Together these two shunts are successfully keeping the cerebral spinal fluid from building up in areas of my head. Now if we can just keep these two from clogging up like the original shunt did, we'll be in good shape.

Luckily, since we have two working shunts now, I have not had issues with getting sick anymore. They only had to open a small area of what they had to in the past to do the shunt but they shaved a lot more of my hair this time. (oh well) I have at least three areas of staples on my head (Might be more that I haven't actually found). I also have three areas of staples on my neck where they had to maneuver the shunt as they guided it to my stomach area. I have a large incision in my right side (Not all that different from what an appendix incision looks like.)

My NS wants me to start chemo as soon as possible so I will be returning to the oncologist Feb 15th to discuss beginning Temodar chemo. I will take that five days off 25 for six months and then we'll go from there. (Unless he changes the timeline again then it may be different. Hopefully by this time next week I'll be part of the way through my first round of chemo.

Emotionally - I'm ready for things to slow down for a while so I can get back to work before they shut us down. *sigh*

MEntally - THis is the first time I've felt like sitting down and writing an update so I would say that mentally I'm not anywhere close to where I want to be. I've become a tv-a-holic.

PHysically - I feel like I've been run over by a semi truck!!! I think the doctor lost control of the sstapler when he put me back together. My side and neck both hurt quite a bit from the incisions. I Have to keep my head above my stomach until the scalp finishes healing and that means I don't sleep well. We have a hospital bed so I can sleep elevated but it is just as uncomfortable as being in the hospital without the every 30 minute interruptions. I'm exhausted because of not sleeping well and tired of not being able to do what I want. I'm just not able to do so many things because of various reasons. (Most of my incisions have healed well, the ones on my neck are not as healed as the rest because of it being in an area that is constantly moving. I hope I don't have to go through any metal detectors any time soon because I'm sure the 100 or more staples will set it off. I have some really tight muscles in areas I can't do anything about because of incisions(neck, shoulders). I need my chiropractor as well but I don't think he could work on me if he wanted to because of the shunt lines, incisions, etc. Besides I can't lay on my stomach yet. Might have to try to get in to see him next time I'm supposed to be in town.

I think that's all for the update for now. My brain has done more work in the past hour than it has in two weeks. UGH!!!

Huggles

A Quick Update From Me

I know that getting an update from my wonderful hubby is not the same as getting one from me. :D Everyone left me to go get real food so I figured I'd take the the to send out an update.

All things considering, I'm feeling pretty good. I really wish was anywhere but here but... I did get a liquid meal tonight. For once the chicken broth tasted good!!! Hoping to possibly be out of here Wednesday.

Our prayers were answered, they found it quickly and so I have minimal incisions. If not for the presssure wrap (it's giving me a headache} I'd be feeling really good. 'd say you've been in surgery too many times when you know th OR staff by name and what their jobs are. I'm in PACU now. Been told that I will be moved to a real room tomorrow, unless I am good enough to go on home.

I have some alarms going off so better send this and start behaving myself.

huggles,

Amy

Update Prior to Surgery Four

OK, so I'm a bit behind. Between ugly Amy moving in and my Internet choking, I haven't been able to send out many updates.

*It has been more than 3 and a half years since I was hit in the face with a baseball that led to the discovery of my brain tumor approximately a month later.
*It has been 2 years and 7 months since my first partial resection of my Grade Three Anaplastic Astrocytoma brain tumor. Surgery One.
*It has been 2 years and 3 months since I completed external beam radiation
*I have been seizure free for 19 months.
*It has been almost 11 weeks since my second resection. Surgery Two
*It has been seven weeks since I had my shunt put in place and I began IV antibiotics for a staph infection. Surgery Three
*It was three weeks ago when I completed my IV antibiotics.

Medically - I was doing fine until the swelling I was getting of a morning, stopped going down during the day. The fluid is filling nearly like it was before my shunt surgery. I have also been having some issues with "morning sickness". Occasionally when I eat my breakfast, it doesn't stay down. It only happens now and then and has always gone away after breakfast. Very strange. I've been good since the last week of December so hopefully I'm over that part of what is going on. The swelling continues to get worse and we are worried that the scalp might give way and actually bust so we feel the best bet is to find out why the shunt is no longer working. Therefore, surgery four is scheduled for Monday, January 17th at Mayo. The object of this surgery is to determine where the shunt is blocked/broken and do a slight reroute in an attempt to make it more effective. We'll see how it goes. Hopefully he finds it with the first cut and I just have one set of stitches in the side of my neck. I could have up to five though if my/his luck is bad. Let's pray for finding the bad spot quickly!!! For those of you that want something specific to pray for, pray that the breakage/blockage is near the neck so they can take care of it with a single incision instead of multiple.

The oncologist appointment went fairly well. He seems to be very knowledgeable. After my surgery, we will get with him again to determine when we will start the chemo. I'm ready to do it and get it over with!!!

On good news, I am done with the IV antibiotics and my PICC line has been removed. YAY!!!!!!!

Emotionally - I do believe that I can now see the light at the end of the tunnel. I fully believe this will be it for a while. I have a sense of peace going into this surgery, I haven't had the previous two times. I hope that is a good sign.

Mentally - I just don't want to use my mind for much of anything, including write updates or facebook. It's sad when even fun things become a chore to you. :(

Physically - Other than the baseball sized fluid collection on my right side scalp, I'm progressing nicely in the physical area. I'm slowly building up my stamina now that the PICC is gone. I did put on a total of 29 pounds from the Prednisone but I've already lost 13 of those by dropping water weight. *Yay!*

I still get very tired and I frequently take a nap during the day. Luckily, my body needs the nap because I sleep great at night as well. Otherwise, I'm glad to be able to take a bath and shower without wrapping my arm in plastic wrap (You can't get the PICC wet). It's so nice to be able to lay down in the bath tub or wash your own hair in the shower. It feels great, it really does.

I still have some sore muscles from changing the way I do some things but I'm hoping that I can find a way of stretching them better that won't make me hurt too much. I've made a lot of good progress since my last surgery and it sucks that every time I feel I'm making progress, I have to have surgery again. Oh well, just another obstacle I guess.

I really can't think of much else to talk about and we are almost to Rochester, MN so I better wrap this up. We'll find out around 8 PM what time I have to be at the hospital tomorrow. In the meantime, we are going to meet mom and dad at Canadian Honker for my surgery dinner. I'm trying to decide what I want to order this time...

John will update on facebook and hopefully through email as well (I hope he remembers how to do it, we'll walk through it again tonight since he missed some things last surgery. When I know, I'll send out a quick email about when I have to check in tomorrow. Otherwise, I'm over and out until after surgery.

Huggles,
-- Amy

My Angel In The Night

I have tossed this post around quite a bit since I had surgery but never really sat down to type it. I have not talked much in my updates about the day of surgery. (Mainly because there are just a few points that stand out and I don't remember much of the rest of it.) What stands out? The horrible nausea I had for the first time in my life after being under anesthesia, the pain level higher than I've ever felt it, and my angel in the night. :)

I'm not sure if it's the anesthesia protocol they used, the fact they had me take some of my medications that morning that I typically take with food to keep my stomach from being upset, or the narcotics they gave me during/after surgery but I have never felt more lousy in my life than in the recovery room and the first several hours in the PACU. I was not only feeling very sick but I was in an 8-10 pain scale and anyone that knows me, knows I had to be in A LOT of pain to hit that. (I don't think I'd ever had above a 5 in the past as I have a very high pain tolerance.) The fact I started coughing within just minutes, did not help matters because that aggravated both conditions as well. Do you know how hard it is to cough when you have a very dry mouth that tastes horrible because of the tube that had previously been down your throat and the fact you had been sick? It's not easy and just makes things worse. Of course, the more I asked for ice chips or water, the less I could get it. They don't want you getting sick even though you know in your heart that if they would just let you have something in your stomach to make it easier to get sick, you would almost instantly feel better. Or at least that's how it works for me. I'm much rather get sick with something in my stomach than nothing but acid. That's the worst feeling in the world.

Anyway, I got out of surgery around noon and was moved to PACU where I was when my hubby John was able to see me for the first time around 2. I spent the next several hours asking for something for the nausea, while they gave me Fentanyl for the pain. Narcotics never have done anything for me for pain. I would rather have a couple of Extra Strength Tylenol than all the narcotics in the world. Narcotics take away my primary method of pain control... my mind. Leave me be to my Tylenol and deep breathing and I won't have half the pain that someone on high doses of narcotics will have. Anyway, I couldn't get that through to the nurse so... I was stuck focusing my mind on not upchucking on the doctors and letting my pain skyrocket out of control. Supposedly, they were waiting for an order to get me some more nausea meds. Unfortunately, the narcotics was keeping me from thinking clearly and just demanding that they give me a cup of water and two Tylenol. What's the harm if I try it and I get sick on it? I'm sick anyway so just do it!!!

Finally, around 8 PM they gave me something for my nausea and my Night Angel started his shift. I could have kissed him when I asked him for some ice chips and two Tylenol and he said that he could do it. Within 30 minutes, not only was my nausea under control but my pain level was down to a manageable level. It did take a Tramadol as well because let's face it, Tylenol doesn't exactly work very quickly but was quickly under control once I was able to get someone to listen to what I needed.

He knew I had been through a rough day and I had told him about my neck and back problems. He was in there frequently checking on my position, moving me, or giving me a neck massage. He was the only nurse throughout my stay that was right on top of my Tylenol every 6 hours so that it didn't wear off. I guess nurses just aren't used to patients that aren't on high doses of narcotics and doesn't understand that when you are doing nothing but an over the counter pain reliever you have to keep it in your system.

When John left me around 8 the night of surgery, I was in a lot of pain and I think he was very worried because he had never seen me like that. By the time he got there the next morning, I was all smiles and feeling great.

Anyway, my Angel took great care of me that night and was quick to get me up the next morning to relieve the rest of my neck and back pain. Tyler, you were truly my Angel in the Night. Thank you. *All smiles from your biggest pain on October 26, 2010*

I'm Breaking Out of This Joint

Well, I've officially been discharged. I am going to get cleaned up and feel normal again and then I'm released to go. We will be staying in Rochester tonight and I have an appointment with my Neuro-Oncologist tomorrow afternoon so we will be staying a second night as well and coming home on Saturday. YIPPEE!!!

Can't wait to be in my own bed. Anyway, should be close to normal real soon and I'll be posting some Halloween pics as soon as I get cleaned up. :)

Love ya all and God is Good

Just Spoke With The Doctor

I still have at least one doctor I need to see today (the Neuro-Oncologist) but in all essence I have been released by the Neuro Surgeon. Everything looks great, they were very pleased with what they were able to remove, and they agree there is no reason to keep my on the steroids (the NO will make the taper decision though) since they removed an area the size of his fist from my head. Needless to say, swelling should not be an issue. :)

They are talking I will get out of here today but want us in the area at least until tomorrow. This is fine with me. Gives me an extra day to prepare for the trip home and to discuss options with my NO. However, I can't say I will be upset to leave. I much prefer managing my own medications to taking them whenever the nurse gets to them. It hasn't caused me any issues yet but my schedule just works so much more smoothly and I don't have to get up in the night to do it. They are going to come in and do some cleanup on my wound area sometime today so then I will actually attempt to post some pictures of this beautiful face. Right now the oozing from the staples (while they make a great Halloween costume) is probably a bit much for the average person to view without getting sick. Don't worry I do have the pics of it for anyone nuts like me that would want to see them but I'll reserve the Facebook pictures and the like until after it's been cleaned up and hopefully I can get a hairbrush through this mess I call hair. Rest assured my halloween costume will be amazing this year. :D

Anyway, I slept great last night and I find that to be a very good sign. I slept an entire 8 hours spread over two four hour sets. I was impressed. I even managed to sleep on my right side despite the staples. This is how I know the pain level there is very manageable now.

I hope to get John out of bed here shortly to go for a few laps before breakfast and then hopefully they'll get me cleaned up after breakfast and look at whatever comes next. With a little luck, I'll be seeing some of you next week and should be up for visitors.

Amy Checking In After Surgery

Well, if things keep going as they are, they are talking about the possibility of me being released tomorrow. This will be one day shorter than the last one.

This one has not been near the piece of cake the first one was. I was beginning to think yesterday that I was in way over my head (no pun intended) but today things are going great and other than still being on more of the steroids than I'd like, I'm feeling really good.

Surgery went well. He was able to remove everything visible on the MRI scan and it included scar tissue, necrosis (dead tumor from radiation), and some tumor itself (whether it's anything to be concerned with or not to be determined by pathology). This time the anesthesia made me very nauseous and I went through a heck of a day. The more I tried to not be sick the more sick I got and the more sick I got the more pain I was in. It was not a fun day yesterday and I was seriously regretting that I had to do this again. However, once we finally got some meds in me to control the nausea, I was able to drink water and then go back on my Tylenol which began controlling the pain. After I got out of pain, I was doing pretty good and got to take a look at my now gorgeous stapled head. Got staples this time. I think I prefer the stitches but these aren't too bad. I'm curious if they hurt more coming out though. They feel like they might. Ok, I'm rambling I can see so I better get back to other things.

I was up early this morning sitting in a chair and got to eat a soft breakfast. MMMM scrambled eggs, toast, and rice chex. Just got moved up to my room outside of ICU about an hour ago and not get to figure out what I want for lunch. Hmmmm... what sounds good? Anyway, word on the street is that if I keep doing as good as I am right now, I will get out of here tomorrow. We will still probably be here until he weekend because of pathology but we'll see how it goes.

Ok, the final summary... Although not near as smooth pain and speed wise as last one, it's been very smooth and there are no major issues that have arisen and no deficits (unless you count the fact my right eye is swollen shut again and I can't see out of it!!!!) I'm still certain the steroids are going to slow me down a bit yet and hope to get off of these really soon.

I guess that's it. Amy signing out about 24 hours after surgery. Thank you all for your thoughts and prayers. Love ya!!!

Surgery Less Than 24 Hours

Well, this will probably be the last major update for around 24 hours. There might be a few updates from John over the course of the day tomorrow but I want to put the message out now that there will not be any proper updates on status of how things are going and he will NOT know anything until around 7 PM CST tomorrow. They are saying it is an 8-10 hour procedure and he will probably not see me for 10-12 hours after I start pre-op at 5:30 AM. Therefore, it is likely to be a quiet day with the exception of maybe a couple of status messages late afternoon as I get moved from op to PACU.

The doctors seem very confident and so do I so we are ready to roll tomorrow. They are as anxious to get me off the steroids as I am to get off of them and it's quite interesting to say the least when they say that I have reactions to these things that they don't typically see in patients until they have been on them for months. YIKES!!! Anyway, I'll hopefully be posting to you all in 48 hours or so.

Love ya and huggles

On Our Way to Mayo

We are making the trip up to Mayo. Things are pretty uneventful so far other than me fighting some of the water weight from the steroids causing me to sound like I'm hacking up a lung. I'm really looking forward to getting off of these things and back to feeling normal.

The schedule is as such for the next week or so.

Monday - Pre-surgical testing and MRI. Will find out after 8 when I need to report for pre-op on Tuesday. (I will post this after we know on Facebook.)

Tuesday - Surgery. Time to be determined when we call on Monday. One of us will post surgical time when we know. John or I will send an update when it's over and we know more.

Wednesday - ? - In hospital. John or I will post updates while I'm in the hospital

We will likely be at Mayo until Tuesday or Wednesday of next week at the minimum as I'm guessing they won't release me to go home until it's at least been a week. Then we'll go from there.

Love ya all and many huggles,

Surgery Going Forward October 26th

I just wanted to send a quick update that we have finalized that I will be having surgery on Tuesday, October 26th. We will not know anything about times until after 8 PM on the night of the 25th. If you have me on Facebook http://www.facebook.com/dreamcatcher79 (please indicate you are from my blog in message when you request) we will post times on that as we know them. We will not know actual surgery time until Tuesday after we get through the pre-op stuff but my husband John will then post and entry update with details.

I am very positive about the direction we are heading and honestly, I'm ready to get this surgery done so I can finally start feeling better after 8 weeks of feeling like crud. We are hoping and praying for a smooth surgery and that the issue is scar tissue and not tumor regrowth.

I will be talking to you all again soon.

Tentative Timeline but Solid Plan

While no one looks forward to any surgery and especially not a second I feel very confident and good about the route we are preparing to take for the latest obstacle for me as a result of the brain cancer world.

All of us (doctors, my hubby, and I) agree that the issues occurring in my head is not going to go away without surgery. Surgery isn't all that bad of an option anyway because it will tell us what is going on in regards to necrosis/scar tissue, tumor, and will actually open some doors for us for possible future trials or options should it be tumor. I'll get into this in the future.

For now, my biggest issue is the steroids. They are doing their job and keeping me functional right now but I feel my body getting weaker by the day. While I originally took that as a bad thing because I would be going into the possibility of surgery already physically weaker instead of in what I felt was good condition, the surgery feels the sooner the better since it's not likely I'll be off the steroids until the little problem is removed. Meaning the steroids will have less damage time the quicker I get in rather than being on it longer.

With all that said, we have agreed and tentatively scheduled my second resection for October 26th. I'm set on the date unless getting other things sorted out and arranged force us to move it out another week. I feel very good about the surgeon. He and I are very much in the same mindset and outlook. We share a lot of the same ideals and he was very open and honest with me about what he felt would be the issues/biggest obstacles. He's confident in his ability to remove what's there and get me out of it with minimal/no issues. I'm confident that he can do it as well. I really feel as good about him as I did the NeuroSurgeon I originally chose (whom ended up not doing my surgery) and I feel he has enough of the same philosophies as me that he will not hinder my ability to do as I need. I think he will give me nudges in the proper direction with the right force rather than holding me back like my surgeon did with round one.

Anyway, looks like surgery is in my near future. I'm ready for it, I'm pumped to finally have direction and the ability to go from here instead of being in limbo.

(Yes, my opinion is very different this time around. I guess there's a lot to be said about knowing what's going on and having been there and done that. *smile*)