Post Surgery Three Week Update

Ok, so it's a day late. Had a couple of rough mind days so...

• I am 2 years and 5 months past the partial resection of my grade three brain tumor (Hereby known as surgery one).
• It has been almost 2 years since I completed external beam radiation.
• I have been seizure free for 17 months.
• It has been 3 years since I was hit in the face with a baseball that led to the early discovery of my brain tumor approximately a month later.
• It has been 3 weeks since the subtotal resection of my grade three brain tumor, scar tissue, and necrosis (Hereby known as surgery two).

Medically - After spending 7 weeks fighting what was believed to be a severe sinus infection, I had surgery to remove what is believed to be a sub to total resection of my tumor. The results appeared to be a near equal amount of scar tissue, necrosis (dead cells from radiation), and active tumor. While it's not been determined if the tumor cells are left over from my first surgery and radiation or if it's tumor regrowth, the next step for me is the same. I will be seeing a local oncologist on the 30th to discuss the beginning of a chemotherapy treatment called Temodar. Temodar is a very effective from of Chemo for brain cancer. It is the next step in my treatment and is part of a standard protocol type. This is essentially step three in the typical protocol. There are still many options available although not as effective as Temodar. The current plan will be to do a 28 day cycle for 6 months and then decide what to do from there. This 28 day cycle will run as such. Take the oral based chemo for 5 days and then off for 23. Not sure of the dosage yet but the Neuro Oncologist at Mayo has recommended 150 mg for the first month then 200 mg after that depending on how I tolerate it. While I still don't have all the details of it, I'm guessing I'll begin it the first week of December. That will get me at least one round under my belt before my short term disability is due to expire. (Although I'm hoping I can get them to extend it until after my second round.)

Temodar is usually fairly well tolerated but everyone is different. I should be able to live fairly normally other than the 5 days of taking it and perhaps a few days after. I will have to be careful to avoid being exposed to infections so I may get a little paranoid at times but overall I'm thinking this is a good step and my quality of life will not be severely effected. (Not as much as on the steroids anyway).

Emotionally - Despite a crazy few months, I am holding up pretty well emotionally. I am approaching everything with my positive attitude that I always try to keep. It is just so much easier to be positive than to think negatively. I've been keeping myself busy at home and that helps keep me focused on healing, getting better, and eventually getting back to where I was before I came down sick again.

Mentally - I am about ten times more mentally stable and competent at this stage of my recovery than I was at this stage of my first surgery. Truthfully, I'm probably more mentally stable at 3 weeks this time than I was at 3 months last time. I fully believe that the steroids are the different. Last time I was still on heavy steroids at this point and this time I'm almost off of them. (I know it seems like I blame a lot on steroids but they truly are the problem.) I think this surgery would have been a breeze if I hadn't been on the steroids to begin with. Oh well. At least I'm that much ahead already. The only real mental struggle I have is motivation and stamina. I have to literally force myself to do things but I guess that's not so unexpected given everything I've been through. As for stamina... that's mostly caused from not sleeping as I should. I tend to lay down for 10 hours or so but get up at least once for my Tylenol and several times for bathroom breaks and sometimes one or two times to get a snack since I've hit the major snack binges very early in the AM. Therefore, while I am down for a reasonable amount of time I'm up a lot in the night so my sleep isn't great. I'm sure this is part of my physical and mental stamina issues.

Interestingly enough my mental competency is pretty good thus far. I can play my "brain games" and I'm actually doing fairly close to what I was before my surgery. If I can work on processing quicker, I think I would be right on the same track I was before surgery.

Physically - Other than fluctuating 5-20 pounds a day in weight thanks to the water weight from the steroids, can't wear most of my pants because my waist looks 8 months pregnant, and continue to cough especially later in the day... I'm doing fairly well. My knees are weak from the toll the steroids have put on my joints but they are holding up very well compared to what they have in the past. I have regained the strength to climb steps and I can actually get on the floor and get up but have to use more arm strength to get up than leg (Not the way it should be).

I am able to do a lot of the things I couldn't early on. I can actually get things off the floor or lower shelves without feeling dizzy, don't have to wait as long to get my bearings when I go to get out of a chair or bed, and can pretty much do what I want as long as I'm careful about it. My stamina is still very weak but as I said mentally a lot of that is the difficulty I'm having in getting decent sleep.

I am feeling good and ready to take the next step in my recovery which is slowly integrating a light workout into my daily activities. This will increase my stamina, help me get my strength back, and start me towards getting back to where I want to be. I'm not going to set a crazy goal or anything like that but I am anxious to be able to wear my pants again. Most people know that the word "diet" is a dirty word to me so no that won't be in the goal but rather doing it the natural way by getting my exercise again, getting out of "fast meals" that we've been in the bad habit of lately, and just generally focusing on my health again.

I haven't even tried to experiment with my head/hair yet. I have some pretty significant swelling on the right side of my head where the fluid hasn't fully reabsorbed yet. I honestly think I look like some strange half a Klingon or something like that. I have this big swollen area that sticks out making the side of my head bulge. As for hair, he honestly didn't shave a hole lot at all. As soon as the rest of the dry blood falls off, I can probably do my hair like I did before surgery and no one would be the wiser. The scar has healed great with only a few new "landmarks" that no one but me will probably ever see. Not that hair and scars mean anything to me anymore but... Yes, I've dug out all my hats. Not looking forward to the winter although my head is not reacting to the cold like it did after the first surgery so hopefully it won't be as bad as I thought it would.

Family/Home - John is busy with work and having to shoulder a bit more around the house in my recovery. He's working all the hours he can to try to make up for the 6 days he had to go with no pay while we were up in Minnesota. It's not helping that our son is taking a reversal and not wanting to even do what he is supposed to. Not sure whether he's just stressed out or what but he has really not been helping matters around here much. Hopefully, it's just a phase and he straightens up soon. *Sigh*

On another note, we got the refinance loan on our house. We will actually close next week. It will be a really good deal for us since it will now be a fixed loan, we'll knock 7 years off of our loan, and get cash back to replace our kitchen floor and some other home improvement things that need to be done (Some are true necessity or there will end up be structural issues arise).

Well, I guess that's the update for now. I'll try to do another update after I talk to the oncologist.

Huggles

Lots of Good Things Today

Well, I think this has turned into a very good day for me despite having a rough pain night last night.

Last night I didn't sleep well at all thanks to some left side extremity pain. The steroids have finally done what I knew they would in that they have weakened the cartlidge in my knee. Steroids are bad enough on joints without having bad joints going into it so I should have known that no amount of gentle exercising and rest on them would keep them from weakening. I officially can no longer climb stairs. No big deal I guess. I got through that part last time and it doesn't seem to be as bad this time. YAY!!! Anyway, the weakening has me walking weird which caused me a lot of pain last night. Only two hours worth so it could have been worse. I've handled worse just hate when it happens at midnight or so. UGH!!!

Anyway, woke up this morning starving and took my meds, then back to nap. Got lots of stuff done after I got up though. Got some important phone calls made. Got news that our house refi went through. Major YAY!!! Got my local oncologist called for a consult so we can start making arrangements for my chemo treatment. (Nov. 30) Got what should be my final date on the steroids (Nov. 19th) Another MAJOR YAY!!! The timing seems to fit pretty good. I should be off the steroids and feeling better by Thanksgiving, won't start my first round of chemo until after Thanksgiving, and the timing of the second round will put it after Christmas so I should feel good for all the holidays. :) Also, I think the timing of the second round of chemo will allow me to put off returning to work until after the first of the year, which is good in that respect too. Then I won't be the only one at work over Christmas shutdown and can start fresh on the new year.

Ok, I think it's time for my afternoon nap now. Steroid issues are starting to minimize so that's a good thing (other than the knees of course but that will still be several weeks I'm sure until things come back to normal).

Thank you all for your continued thoughts and prayers. Got a good week planned and I look forward to seeing some of my friends at work tomorrow and get these staples out!!! YAY!!!

Huggles to all,

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*

Looking Ahead Into Next Week

Here the weekend has just started and I'm already looking ahead into next week. Seems kind of backwards, I know. I just know from experience with my first surgery that the weekends are going to be boring. John wants to be home and enjoy the weekend when I'd rather be out doing something. *sigh* Oh well, can't win them all I guess. I will admit that I'm a bit overstimulated from the week. I remember this from my first recovery as well. There's a firm line between having too much activity going on in the house and not enough. Since I only had about half a day to myself all last week, I didn't get that total down-time that I really needed. You know, no TV, no one moving around, just me and my mind and nothing. Maybe it isn't possible to know what I'm talking about. It seems to be a brain thing. I hear comments about over-stimulation from background noise and the like from my brain support groups and how it tires you more than anything else you can do. I think that's what I'm hitting going into the afternoon today.

However, looking into next week. I will have an entire day to myself on Monday. YAY!!! Tuesday is going to be a busy day and I'm sure I'll crash in the afternoon. I am hoping to stop by work at around 8 AM Tuesday morning to visit a bit. I then have an appointment to have my staples removed at 9:30 AM. If I can get my chiropractor to see me, I hope to see him yet that morning to try to take care of my neck and back issues. I think I'm ready for him if he thinks he's ready to work on me. I will be calling you Monday, Dr. D!!! :) Hopefully this will take care of some of my sleeping issues and let me sleep a bit better at night. Then I will finally make the trek over to see my Grandma and rest up a bit before we head home. I know she's anxious to see me but we really haven't been to town when we can get over there.

Wednesday and Friday, I'll get to be home to myself again. I guess my little supervisor will be here Thursday since he doesn't have school for Veteran's Day. Should be a healthy mix of stimulation for the week.

I guess the final trick I have to figure out is when I'm going to manage to get in to have a tooth fixed where it's not going to kill me head wise before I start on my Temodar (chemo). I have a tooth that has been nagging me for months and has had to be put aside for weeks because of me being sick. I'd love to take care of it before I start my first round to Temodar but I guess we'll have to wait and see. I will be calling a local oncologist this week to try to arrange an appointment to discuss my protocol. I'm aiming to start it around the first of December (I think I should be entirely off the steroid by then) to put it between the holidays so that hopefully I'm feeling decent for the holidays. It's usually a fairly well tolerated chemo so I'm thinking I'll be good regardless of when I go on it but why take chances, right? It would be a 5 day oral chemo with 23 days off between for 6 months before we reevaluate it. Of course, I am waiting to get the official protocol from my Neuro-Oncologist at Mayo as well so that I have all the facts before me before I call them. I should be getting it this week.

Therefore, this will be a week of getting some of the paperwork side of things done and figuring out where I can swap budget money to pay for this last one. Temodar is not going to be cheap on my insurance and with my pending end of employment, I'm going to get double-nailed with my insurance. UGH.

Well, that's enough for now. Recovery seems to be going well and other than the darn coughing still, I'm maintaining my strength, resting as much as I can, and overall not feeling too bad all things considering. I'm down to just 40 MG of Prednisone (steroid) now so hopefully even the nagging cough will wean its way down soon.

Huggles to all,

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:

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

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