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

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

What A Pain That Was!!!

This has been a week I would have gladly skipped. On Sunday, the cultures came back from the fluid in my head and it was positive for Staph infection. Ok, so it's positive and I need to go on some antibiotics... "no big deal" I thought. HA!!! Well, I am now on IV antibiotics every 8 hours to take care of the infection and I'm now being told I'll be on oral antibiotics for it for the rest of my life. FUN!!! This news would not have been as big of deal if I felt that someone... anyone... had a clue what was going on. The people at Infectious disease would say one thing, my Neuros would say another, and the story would change almost hourly. At this point all I really wanted to do was go home. It would have been very easy to send me home Monday on the IV they had started me on and done bloodwork, further testing, and medicine adjustments from there (I have home health here and I am actually giving myself the IVs) ... but no Infectious Disease had to be a pain in the behind and wouldn't let me leave until they knew exactly what kind of infection, how much of the antibiotic to give me, etc. All bloodwork and cultures had to be complete before they'd send me home. Even then they were scheduling tests for when I was supposed to be home. In the end, I was told I'd get to go home Wednesday. However, as of 5 PM on Tuesday, they still had not sent the scripts for my IV to home health (whom needed it by 4 PM). Therefore it wasn't until Wednesday morning that they agreed I could leave and have a late dose of my IV antibiotic. (The thing has an 18 hour life so why it's as big of deal I'm not sure.)

Anyway, we did get out of there Wednesday and got home around 7 PM. We met with a Home Health nurse that night for training for me to administer my own antibiotics. We're doing very well with it. However, I think the 8 hours between thing is going to get old quickly (and as big of idiots as ID is, I don't look for them to even be willing to consider going to 12 hour doses.) Therefore, I get to take my IV at 4 AM, Noon, and 8 PM. Woohoo!!!

To top it off, I'm on a low dose of Prednisone AGAIN. It's ok, I won't be on it for long because I'm supposed to finish it on Saturday. I'm truly struggling with many things right now in the breathing department. Between the Prednisone cough and the labored breathing caused from the antibiotic, it's making my recovery more painful then it really has to be. However, not much we can do.

I realize that this is probably just another confusing piece is the puzzle of the last week. I really didn't get to write a good post about it. Truth is, I'm not much in the mood to relive most of it because it was a huge headache. The shunt is annoying, the PICC (Peripheral IV that has been placed in my arm and goes straight to one of the larger central lines to make getting my antibiotics easier) isn't too bad but it prevents me from showering the way I would like, the coughing and inability to breathe sucks when all you can do is exhale at times, and it is a pain to try to minimize the pain in both your abdomen and head at the same time.

On the bright side... even though it took forever to get things sorted out to get here, we are home, I slept great in my own bed last night, and everything seems to be going ok.

I am about ready to snooze now. I've been going way too long today so I will try to update with better frequency from this point forward.

Another Surgery At MAYO Yesterday

This would have originally been known as the one month update but since all heck broke loose here is the actual update.

Ok, sorry everyone I am way behind. Last week I had an area of swelling over my incision site that increased in size by double and didn't seem to be improving. I contacted my NeuroSurgeon and did not hear back from him until Wednesday. Wed morning I woke up vomiting to the point that I could not even keep water down. John took me to the ER, where a CT scan was done. They found an area of Hydrocephalus (fluid in they brain) and that is what is causing the nausea and swelling (the fluid is leaking in through the weakest point at the cranial flap and thus causing the swelling).

They took me in around noon on Friday to have the shunt put in. It was a rush job so sorry I didn't have time to notify everyone. It went really well and other than a couple of incision pains I'm feeling pretty good. I got up and started walking this morning and it is going pretty well. I able to eat and keep it down which is a good thing. Haven't been able to do that since Wednesday. Yay, food!!! I will be here until Sunday or Monday depending on when the infection cultures finish. The wanted to ensure that the bulge hadn't developed any infection with all of that sitting up there like that. They don't believe there is and all of the initial tests have come back negative so we are hoping the cultures come back negative and we can move forward again. (We hope to hear on Sunday so we can drive home on Monday since my oncology appointment is scheduled for Tuesday). I'd like to get established with him even if it's not going to mean a few more weeks or months before I can start now.

Well, I think that's everything. Now that I don't have to remain at a 30 degree angle or stop several times to throw up, I should be able to keep everyone posted.

Huggles