Sunday, October 31, 2010

Home Never Felt So Good

Well, we made it home around 8 PM last night and it was nice to be home and our family reunited. John and I spent a good deal of the night making me feel human again by cleaning up all the dried gunk on my head and hair and then we both had a great night's sleep. It was so nice to wake up in a familiar environment, in my own bed, and doing my own thing. Nothing beats being home!!!

John will be home with me through Tuesday and then we'll see how I'm doing from there to determine the rest of the week's plan. I will have to go have my staples removed one day next week and will need to find an oncologist to administer my chemo to me here locally so there's still a lot to do in the next few weeks.

Other than being very stiff from the long drive yesterday, I'm in good shape, feel good, and mentally on the ball. Gonna work with the boys to get everything unpacked today and get settled into the routine we'll have for the next few weeks. Visitors are welcome so if you are bored, come on by. If you are squeamish, call first so I can cover my head for you.

DO NOT SCROLL DOWN PAST THIS IF YOU ARE SQUEAMISH!!! I am NOT responsible for anyone fainting or passing out by seeing them.Well, I think that's the biggest part of the update for now. I would not scroll down below this point if you are squeamish for there are some pictures that might be too graphic for some.

Many Huggles and love to all

A safe picture to give a bit of buffer room before things a little more graphic:

Saturday, October 30, 2010

Heading For Home Sweet Home

We are lounging in the hotel room for another few but then we are going to hit the road for home. It's a bit later than we originally intended but we both were sleeping so great we got a late start. We're both very ready to be back home in our own beds and I'm ready for my own bathroom so I can clean up properly and get my head back to normal feeling.

The lowered dose in steroids is already making me feel a lot better. I woke up this morning feeling normal instead of like the MIDAS man. granted it had been over 12 hours since my last prednisone at that point but I wasn't expecting to feel that good this morning. I'm hoping that means that the ride home won't be as horrible as I feared.

The oozing on my head appears to have completely stopped. I didn't have any additional in the night so hopefully that is finally under control. My cough is also currently under control which is a big thing. The swelling in my face is minimal which is a surprise to everyone. My face feels full but it's not swollen shut anywhere or anything like that. I like this because it means my vision isn't hindered. My pain is still being managed very well with Tylenol and Tramadol so that is well under control and even then I'm not necessarily taking it because I have to but more because I don't want it to kick in.

Ok, John is heading down for the valet cart so I guess I better wrap this up and put this away so we don't forget it.

Will be seeing you all soon. I will be home all this week with John at least some of the time and possibly my mom some of it, depending on how I am feeling. I will have some appointments in town the next week so I might be making some surprise visits while we are there.

Tomorrow I will post my Halloween costume and some more pictures for everyone.

Huggles and please continue the prayers for my great recovery. Thank you, God, for all the wonderful friends and family and blessings you have given me. AMEN

Friday, October 29, 2010

The Long Awaited Big Update

Ok, sorry I didn't post this immediately but by the time we got back to the hotel I was tired so I rested. Here's the low-down on what we found out at the doctor today.

  • The oozing isn't anything to be concerned with. It's just the build up of swelling that was there working it's way out. The wound itself has sealed nicely. The Neuro Surgeon cleaned it up really well and showed us what we can do to keep it that way. He basically had to unteach us everything we knew about wound treatment from doctors in the past. It looks a lot better now and we've got some nice protection on it to keep it from destroying all the clothes and hats I've got. Meaning I can actually go out in public again and will be able to do my Halloween costume when I get home and finish cleaning it up with a nice shower. mmmmm.
  • The official results with the pathology is that there was a lot of scar tissue and necrosis. There was tumor of an undetermined quality being either leftover grade 3 with radiation changes or a grade 4. They aren't really concerned with the actual grade because with where mine currently sits (they removed everything that was there) the treatment is the same either way.
  • Based on pathology, I will begin doing Temodar (a "mild" chemotherapy that is highly effective in the brain) when I feel I am ready. I will do the treatment at home locally with the guidance of my Neuro Oncologist at Mayo. I will be on a 6 month protocol to start with 5 days on then 23 off. This is pretty standard protocol. We'll make decisions on whether to keep on it at that time rather than trying to predict the future. If the Temodar doesn't seem to do what we hope (keep anything from changing in MRIs) then there are several other options at our disposal in which we will discuss at that time. They are hopeful at this time that we should NOT have to do anything further from this currently. (In other words, they feel it resembles the grade three that's been there all along with radiation change not a fast moving grade four, which is very good!)
  • I will begin the steroid taper today and with a little luck will be off of it by Thanksgiving. YAY!!!
All it all, it was what we expected to hear and what we were prepared to undertake. Might be some rough days ahead with steroid transition and then Temodar but Temodar is usually easily tolerated and he said it's one of those that motivation and determination really does affect how you let it effect you. Therefore, he felt it shouldn't effect my life in any way other than maybe making me fatigue more easily, taking a couple of more meds, and being more careful when around those that are sick... all of which I should be doing anyway.

That's the update. Things are good, I'm looking forward to going to eat here in an hour or so and then hopefully a ooze free sleep tonight. Home sweet home tomorrow!!! AHHHHHH my own bed!!!!

Love and Huggles all. All of our prayers has done it again!

-- Amy - Fight Like a Girl!!!

Staples Oozing Hate Feeling Helpless

Well, this will not be a super long update but I figured I better send something out today since things are changing a bit and I just need to vent a bit as well.

We stayed in the hotel last night and it went ok. They goofed on us and we ended up with two double beds instead of a single queen, which isn't a big deal other than the queen rooms had a really nice recliner that I would love to be on right now. The trade off being that we were able to have twice as many pillows so that made arranging sleeping positions easier... yeah right. Basically, long story short, I've had A LOT of oozing issues with my staples since being released from the hospital. I think it was a combination of things. I didn't have to cover my head while walking around the hospital because people expect you to look like a walking horror picture. You can't exactly do that out in public. (not the way I look right now anyway. Imagine the most gruesome horror makeup job you can imagine and magnify it times 10.) Anyway, in the time it took to get from the hospital to the hotel room (10 minutes tops) my staples oozed entirely through the head wrap they had given me. By the time I went to bed, I had been through an entire box of gauze pads, all five of my head wraps I had with me (including one of the two they gave me), and was still having issues. I've got a call into the doctor this morning about it. I think the issue is in covering my head, the fact I'm still coughing a lot from the steroids, and the area it's coming from has a lot of scar tissue from my previous surgery and radiation. Therefore, it's taking longer to heal and every time it does get there I cough and bust it open again. It also doesn't help that I'm a bleeder and it takes me forever to clot anyway and usually takes four or five shots to get it good and solid. (I have actually ended up with scars from simple cuts that would just about heal, I'd hit, it'd open back up, just about heal, etc) I'm thinking this is what is happening but in the meantime I've got to try to keep the blood from ruining everything I have and getting all over the hotel room.

I'm hoping they will be able to see me when I go to the Neuro-Oncologist and either help me clean some of it up or see if I busted something in my coughing that needs a stitch or something. Speaking of which, I was supposed to see him at 12:30 and that appointment has been moved until 3. I knew there was a reason we would be better off just planning on being here tonight anyway. Then we'll make the run home Saturday. (Assuming everything really is alright with my incision and they still think I'm good to go.) At least at home, we can take better care of it and I don't have to worry so much about my blood getting all over the hotel room. No use infecting other people if I can help it.

While it sounds like I'm complaining about the oozing, I really do know that in the grand scheme of things it is a minor annoyance. I just hate not being able to do anything about it. At least if it was some sort of deficit or something I could be working towards improving it and I just feel helpless. I hate feeling helpless. However, I'm going to stay focused on the bright side now that I've got the venting out of my system and hopefully in a few hours I'll be able to look on to something different after speaking to the doctor on what I should do.

I can already see I'm going to be buying stock in white pillow cases, covers, and white towels and rags so they can be bleached. :)

Alright well, I'm going to put a compress over my eyes since they are starting to swell again and try to find a comfortable sitting position to rest.

Love ya all and many huggles

Thursday, October 28, 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.

Wednesday, October 27, 2010

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!!!

Tuesday, October 26, 2010

Amy's status

Amy is resting now. No problems, she can move all of her fingers and toes, she is in some pain but no more than what's to be expected. She is alert and doing well.

Amy's status

Just got the word she is coming out of surgery and being moved to ICU, we will get to see her in about an hour or so. They said everything went well.

Amy's status

They took her back to the OR at 7:40 and they started the procedure at 8:40. They will give us updates every 2 hours.

Monday, October 25, 2010

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

Sunday, October 24, 2010

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,

Thursday, October 21, 2010

Steroids: Necessary but Evil Drugs

I am not typically a whiner but as I sit here at 3 AM this morning having been awaken after only 6 hours of good sleep with a sudden craving for food and to get out of bed, I figured what better quiet time then to discuss the biggest bane of my existence... steroids.

It is no secret that medical steroids cause a lot of problems with just about everyone that takes them. Therefore, I am really no exception to it I'm just tired of them already and need to vent about them a while. Might also give something for others that deal with these to relate to or warn those that may have them in the future.

A little background: I am NOT a medical doctor so anything I say here should be verified with you your own medical doctor. I am no expert on steroids just someone that has had the misfortune of being on two types during different periods of my life and is a little annoyed right now at the side effects caused from her latest 13 day and counting stint on them. (Don't get me wrong I'm happy to be on the 13 day stint of the particular one I'm on rather than one that I've been on in the past but Evil is Evil!!!)

Anyway, as this post moves along please forgive me if things don't seem in a logical way. It is a cross between the steroids, the issues I am having in my head anyway, and the fact roosters aren't even thinking of getting up yet.

So what do steroids do? They help/replace the bodies natural production of corti-steroid (typically produced by the adrenal glands) to help control swelling and inflammation. While there are several forms of medical steroids, I can on speak on my experience with two: Prednisone and Decadron.

My very first experience with Prednisone happened several years ago (6+) and for all intensive purposes was pretty good. After having fought a serious attack of bronchitis/reactive airways I was put on a 10 day dose. The only real side effects I noticed with this short of dose was general mind disorientation (I don't remember how I got to work that morning) and trouble falling asleep.

My second experience was with Decadron. Dec is a very strong steroid compared to Prednisone and uses a different formula. This is typically the first choice for those with brain swelling (such as what I get) and many forms of cancer. I went on Dec the first time following my first brain tumor resection in 2008. I was on it for a 6 week time with it gradually being tapered off. At the time, I wasn't 100% sure if all the side effects I was having were from the steroid, surgery, or the anesthesia but by the time it was over, I have no doubt that 95% of the things I discuss here were Decadron related.

I went through surgery with flying colors. I had very little if any pain, mentally I was sharp as a tack post op, and generally felt great. As the days post surgery went along, my mental sharpness fell drastically with each day to the point that some days I could barely put my words together (at the time I thought it was just my brain protesting its invasion). Then the joint weakness and pain started in. I would stand up and my knees would act like they were rubber. I couldn't get out of bed without assistance from my husband because of my rubbery joints. I was in horrible pain and had to take something than Tylenol for the first time since surgery. None of this was related to my head but to my body from something. By two or three weeks in, I could no longer climb stairs, my knees could just not lift me. I actually had one heck of a time getting in and out of most vehicles because I couldn't get up if it was a lower vehicle or climb up if it was higher. While this was a pain, it was only the tip of the iceberg and lasted for me for 2 months after I was finally off of the Dec for good.

Sleep was also an issue. Despite being exhausted from anything I did during the day, I would often spend hours laying in bed trying to sleep. I tried everything to get there. Most days I would just give up on a regular sleep routine and sleep when I could. This helped but at the same time I never got the sleep I probably needed. I guess one advantage of the steroid in relation to sleep was that when I did sleep it was a dead sleep. I don't think I remember having a dream again for at least 6 months after this. (Again something I thought was surgery related not steroid until I went on the Prednisone here again)

Moods were a killer on Decadron as well. I was very mild angered compared to some of my friends I've talked to and what they were like but I'm also a very mild angered person so I guess that's not so unusual. However, it was not unusual for me to be talking to you happy as can be, be totally sad 30 seconds later, and then unable to shut me up as I talked in circles. These were annoying... yes but concerning no. The one thing that happened to me on Dec that has made me vow to only go on it if it is the absolute last option is the manic moods I got into. I wasn't just moody but would daze and get (luckily only to myself) downright hostile. I remember more than once dropping to my knees (which is a bad thing to do when you can get off your knees) and begging God to just end it. I was doing very well physically and there really was no reason for me to feel this but I just wanted it over. This scared me a lot during this time and again I wondered if this was some horrible personality I was going to have to learn to live with since my surgery. However, after the steroids finally cleared my system, things improved until finally after six months or so, these episodes stopped.

I'm going to basically combine my current Prednisone experience with my prior Decadron experience as I talk about the other symptoms rather than repeat things. Weight gain is a huge issue for most people. It's typically not your "you eat to much now you are going to pay for it gain" it's the "gain 10 pounds for no reason and in places you wouldn't normally" gain. With Dec I gained 45 pounds before it was all said and done. This time I'm holding at 15 but it's still early.

My sense of touch and the tuning I have with my body is basically non-existent. My skin feels numb, I can't feel hot or cold, my taste buds are numb, and I can't feel how much pressure I put on anything so my poor hands take a beating when I don't realize I'm too close to something and I'm ripping skin off of my nail beds. My skin is also extremely dry on my hands, lips, and most of the rest of my body but my face is oily and getting an acne issue (which I only have problems with when on steroids). Even my muscles are always tense and I can't feel anything with them because of the desensitization of my body. My body pretty much takes over on its own when it comes to the most basic functions. Basically, if it's something it does naturally it has to try harder to alert me to it (I won't go into any more details than that).

One of the things that caught me off guard within just a few days was the change in my sense of taste. I could not touch anything that had tomato in it (stopped for a burger on the way home from the hospital and about gagged from the ketchup... Yuck), things like orange juice tasted like you had just brushed your teeth and then taken a drink of it (I love orange juice... still haven't figured out if it's a citrus thing of a tangy thing though because I can drink lemonade with no problems), soda tastes flat, and various other things that I normally don't like I can eat or vice versa. I also had a major craving for protein the entire time I was on them. Skip the potatoes give me the roast... no I didn't say a slice GIVE ME THE ROAST!!! LOL

Water retention is a big issue because the metabolism of sodium is slowed. Therefore, you try to stay on low salt but even then the water collects. It is not unusual for me to weigh myself in the morning and by early afternoon I've gained 10 pounds. I remember the first time this happened was on Dec and I was have a really cruddy feeling day. I had only been up a couple of hours (long enough to eat and do my dishes from breakfast) and went into the bathroom where I saw in the mirror that I suddenly looked 9 months pregnant from all the swelling in my stomach. This made my skin hurt bad (where's the desensitization when you need it?) and I kept thinking to myself that at least when this happens when you are pregnant you get something good out of it in the end. I later figured out that I gained 11 pounds in about 2 hours in fluid.

On the same or similar note be in weight gain or water that causes it, I often find it difficult to breathe when on the steroids. It makes my check feel like someone put a huge weight or heavy water filled sack on my chest. This is often very uncomfortable and it makes me labor to breathe especially with my history of reactive airways and bronchitis. I use a lot of my tricks from dealing with the other issues to get through this but as if everything else isn't enough? LOL

You also have moon face which is swelling in your face making it very round and moon like. I think it took well into 6 months for me finally to look normal again.

At around the time I was nearly done taking the Dec I started getting muscle cramps (charlie horses) in my calves. I had not had trouble with that since I was pregnant with my son. Steroids can mess with your electrolytes and was causing me a potassium deficiency. So, of course, out come the bananas and heat which would eventually help after you are put into tears a few times.

Energy is also an issue on steroids. They pump you up, make your heart race, make you raring to go even when your mind and body want to shut up and sleep. It's a strange feeling to be laying there without the energy to open your eyes but yet your body is running a marathon. Just another one of those joys of steroids.

I really want to believe that some of the issues I had with Decradon the first time could have been made more minimal if I had a doctor that could communicate or gave a darn. However, the NeuroSurgeon that did my first surgery was anything but that. I was never prepared for what the steroids would do at that point other than that they would probably make me moody (and this was thanks to being told by my tumor buddies not my doctor). I guess you chalk my first (and hopefully last) experience with Decradon up to learning. This time I have plenty of bananas in stock, am drinking juices to help keep my electrolytes up from the beginning instead of having to try to rebalance them, controlling my sodium and water intake, taking the proper medications to manage symptoms (gastro symptoms mostly) before they start, and maintaining just the right combination of moving and not to keep me limber and strong without overdoing it.

I do know that, while I feel like crud while on the Prednisone, my symptoms with both the more "tolerable to me" steroid and the lessons I've learned has at least made my current episode manageable. It always helps to have a good doctor that understands everyone reacts differently to medications and is able to help you get on what is comfortable and effective for you. I think there's a good chance that had he not agreed that if the Prednisone is taking enough of the pressure and swelling in my head down that I can function fairly normally and switched me to Decadron because that is the standard practice... I wouldn't be sitting here calmly typing or mentally preparing for this next surgery. I would be in a daze and technically unable to make my own medical decisions. (I still often wonder if I would have done radiation so readily after surgery if I had not been on the Decadron. I really don't think I was mentally competent enough at that stage to have been making that decision.)

Anyway, enough ranting and whining for now. I'm going to go grab another something to tie me over for a few hours then go back to bed.

Wednesday, October 20, 2010

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 (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.

Friday, October 15, 2010

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*)

Wednesday, October 13, 2010

A Not So Typical Update

I'm so far behind on updates I'm not even sure what I have posted about and what I haven't. Therefore I apologize ahead of time if you get repeat information or things are in a really unusual order. Got a lot to update on.

I guess to go back as far as I think I have been since updating (I think we were preparing for vacation last time I updated). Our vacation was AMAZING!!! Definitely the trip of a lifetime. We had a great time at Disney, swimming with the dolphins was absolutely amazing, and the new Harry Potter theme section of Universal is totally cool. We were lucky enough to stay at the Animal Kingdom Resort at Disney and that was truly a worthwhile investment. It really added to the whole experience. We ate WAY too much while we were there but we got the dining package and that kept the costs to a 1/3 or less. Harry Potter was great!!! The Experience Ride was totally worth it and Butterbeer is just YUM! (Sorry for the non-Harry Potter fans that have no clue what I'm talking about). However, despite loving being immersed in the world of my favorite wizard, swimming with our dolphin Roxy took the top prize hands-down. I highly recommend you have this experience if you ever have the time. It is worth every penny. They are truly magnificent creatures. For those wanting to see pictures, they are all loaded on my facebook page just click on the link to s

The other thing we all truly enjoyed was the experience of meeting family that either we have never met or haven't seen in ages. We were truly awed by the hospitality of all of the relatives we visited. Tim, Tammy, Becky, Grandma Ester, Tom, Polly, and all the kids!!! You guys truly helped us begin and end our trip on a high note. Then, not to be left out, it was great to come home and see John's dad who was visiting from his home in Texas (he basically took the North route why we were taking the South. LOL). We don't get to see him a lot but it's always a treat when we do.

Ok, I guess onto the total opposite of the fun we had on vacation. A few weeks after we returned, I began having what I thought was a sinus infection. It literally floored me for six weeks. After two rounds of antibiotics, it wasn't getting any better. Eventually, things weren't behaving as much like an infection and we ended up with an MRI. The MRI revealed a large amount of swelling in the right side of my head again. They put me on a steroid to try to help ease the swelling. Luckily, that also helped me get over the strange symptoms that I began having towards the end. We will be heading to Mayo for a consultation/additional testing on Friday (appointment at 10:30 AM) to see if we can determine what is going on. It could be one of many things still at this point whether it's scar tissue, regrowth, or something not yet considered we won't know until then. Therefore while we know there are a few different options depending, we don't know what route might be taken without knowing what is going on.

I guess, long story short, we are hoping and praying it is just some crazy benign issue that is causing me some swelling but we are lining things up if it isn't as benign.

I'll keep everyone posted as much as possible as we move along with updates. Now that I can actually stay out of bed longer than a few hours (I literally spent a week in bed a few weeks ago)

Until next update. All thoughts and prayers are appreciated and anyone I know of that is going through their own issues are in mine.

Huggles all