Saturday, December 11, 2010

Surgery Three - Two Week Update

Sorry if I unnecessarily made anyone nervous there just hasn't been much to update on...

  • 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 and a half years since my first partial resection of my Grade Three Anaplastic Astrocytoma brain tumor. Surgery One.
  • It has been 2 years and 2 months since I completed external beam radiation
  • I have been seizure free for 18 months.
  • It has been almost 7 weeks since my second resection. Surgery Two
  • It has been three weeks since I had my shunt put in place and I began IV antibiotics for a staph infection. Surgery Three
Medically - I continue to fight the aftermath of surgery two (that led to surgery three). I am half way through the IV antibiotics that I will need to take for four weeks before going to oral antibiotics for the remainder of my life.

My shunt appears to be doing it's job despite some slight backup of a morning when I first wake up. I will be talking to Mayo on Monday about it but I believe this is related to the way I sleep and it blocking the shunt in my sleep.

Due to being in the hospital with surgery three and the idiots in infectious disease not understanding that I need to get home and get my treatment going there, my appointment to see the oncologist on November 30th has now been moved to January 4th. I will also be seeing all three groups of doctors at Mayo on January 6th for follow-up (Neurology, Neurosurgery, and Infectious Disease).

The movement of my oncologist appointment will make my return to work a bit more interesting and I'll have to work with my short term disability to see if I can extend my return until after my first round of chemo. I'm guessing I'd be starting it the week of the 10th would love to get one round under my belt before I have to return to work but I guess it will be up to my doctors and MetLife to decide. I'm hoping to get with them this week to get all that paperwork sorted out. (One of the worst parts of having surgery or being sick... dealing with insurance... especially STD).

Emotionally - I can't deny that two surgeries in a single month and feeling pretty lousy during most of the past 30+ days has tested my very emotional resolve. This has definitely been the toughest few months of my three year journey. The end isn't in sight either as I still have more time to do on the IV meds and I still haven't got the trust in ID to not put me back on them. I don't trust them far at all and wouldn't be surprised of anything they decide to do in the next few months. Further, I haven't even started the chemo that has been on hold since my surgery in October. While I don't think it will be a big deal, it's still part of the last few months that has been anything but encouraging in my fight.

I guess, other than that, I'm holding up as good as can be expected. It's emotionally draining... I can't deny that and the near constant pain I've been in this time has not helped my emotional outlook but I'm a fighter and that's not going to change any time soon. We just need to pray that when the IV antibiotics are done, they truly are done and that there are no more surgeries in my near future. That might push me over the calm and cool edge.

Mentally - I really haven't done anything to measure my mental stability of late. Really haven't been in the mood to do anything like that. I'm hoping to get a good baseline one day next week. I'm guessing that it's not going to be on par with my last surgery since mentally I just don't feel as sharp as I was before I went into surgery. I guess I'll wait until the test to say for sure.

Physically - I'm up around 25 pounds since this all started. Not quite as bad as I was after my first surgery but definitely worse than I've been in well over a year. I am struggling mostly with some muscular pains in both sides (they are almost like the pains you get when you "get a stitch in your side" from running). They get worse when I'm coughing or struggling to breathe but mainly act up when I'm standing or walking. It varies in side and sometimes even is in both sides at once. I'm also struggling with muscle pains in my back. I love biofreeze for helping my back. That stuff rocks!!!

As I said earlier, I think I'm fighting a cold now. I just can't seem to buy a break right now. Otherwise, my steristrips on my right side are slowly coming off. I've lost 3 of 12 now. Those that don't know what these are, they sewed up my incision for the tail end of my shunt with disposable stitches then covered them with these special strips that will eventually fall off when things have finished healing. John had them when they did his hernia surgery so they were not new for us. I think they used them on this particular area because stitches would be stressed quite a bit since it would pull every time I breathe. The ones on my neck where the other incision is, haven't even started to peel off. I will get my staples of my head... again... on the 16th.

My PICC seems to be doing pretty good other than being annoying and a pain in the rear to take a shower with. Otherwise, it doesn't bother me a whole lot. Actually, I do have a spot that might be an allergic reaction to the dressing they use. I have a pretty good size red spot that is similar to a blood blister and two more smaller ones that almost look like a poison blister. Now sure if it was an allergic reaction to the tape or just something that happened to appear. The nurse is going to look at it closely again next time I'm due for a cleaning.

I'm moving around pretty good when my sides aren't hurting me. However, I don't appear to be moving as well as I had been mainly because of the PICC line and how careful I have to be with it. I have to use caution not to hit it because it hurts if I do. I also can't get it wet so that rules out doing dishes and the like (Yes, my upper arm and entire shirt gets soaked when I do dishes. LOL)

I'm back to not being able to pick things up off the floor or tie my own shoes but I'll get that back soon enough. Hopefully I'll be driving again by the end of the week... (maybe... maybe not... depends on how my side pains do this week.) I can't get real pants on yet so that will be the first obstacle to overcome. (I love men's lounge pants!!!) It should be interesting to see when I am able to put on my "fat" pants again. Right now the very thought of it makes me hurt because even they are tight thanks to all the prednisone weight. *sigh* Good thing I still had 2 decent pair when I bought my new pants or I'd have to go buy me a few pairs of pants in a size I hope to be out of quickly. (I knew I would curse myself when I finally went out and bought pants that fit after I lost all my weight.)

Family/Home - John is working hard trying to make up financially for the week plus that he had to go without pay while I was in the hospital. He's catching us up fairly well, one half day at a time. Of course, he's also had to take my place doing household chores as well since most of the things I can't do. He's getting pretty good at most of them so I think I'll keep him for awhile. LOL

If we could just get my son to start taking school seriously again, we'd be in good shape. *sigh*

Well, I think that's about it for now. Sorry for not updating for a long time but really mentally I wasn't into doing updates and there hasn't been a whole lot to update on anyway.


Thursday, December 2, 2010

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.