Radiation fun !

Radiation fun ! Well, the radiation was stopped 2 weeks ago due to too many side effects and all. First the brain began to swell which caused trouble like head pain and then face numbness. Then the problem with swallowing started and now I'm on a diet by Bob (the tumor) that included lots of soup and grits and anything else that doesn't get stuck. Last week we had the day for the test that tells what's going on and why it isn't working. Can I say I'm not that into doctors ? I feel like I'm going to go and they will say hey, everything's fine and it's all in your head lol yeah I know, that's where Bob lives anyway.. They rushed us off last week for a MRI, turns out they thought I had a stroke. Thank goodness I didn't and that they didn't tell me before we left for Boston that night. So we had a swallow test to see why things aren't working and then discuss if radiation needs to be restarted again or not. Once radiation is done, it can never be done again, so I'm told, so if it's stopped for good, were back to ground zero on letting this thing grow again. Oh and last week, I lost my taste so no matter how much sugar there is in the coffee, it's like drinking water. Very weird ! I'm becoming the soups chef. I've got a small crock pot that every morning I fill with what ever is in the veggie drawer and then cook all day for lunch and dinner. I do love soup so it's been fun but now that I can't taste, it will be odd to be trying so hard to make it good since it won't matter. It weird when everything tastes like old uncooked pie crust. Of course the swallow tests were inconclusive and then swallowing started working again the next day, thanks to the steroids and swapped out for numb feet. Its weird walking on feet that tingle all day long but that is something I can deal with easily. Monday we visit the ENT and they, with the doctor, will make the final decision on if we re-start the radiation or not. We both vote to start it again but we shall see.I think we will find out Wednesday on the final verdict and hopefully if they start again it won't be stopped right away if things start to go down hill again. I still feel quite sparkly from the steroids which make me want to get every chore known to man done around here. They are slowly getting done and the rest planned out on paper lol Once the tired goes away, then we will do something more but the couch calls my name alot these days which I hate because a couch layer, I am not ! So I lay there and make plans for new ceiling Trompe-l'œil designs, bathroom is planned on both floors in new ways, and more lol. Its going to be a busy year with all these ideas in my head. Now I just need to start making jewelry designs because making them at the bench isn't too hard. This woman pulls off sparkling much better than I. I hear my face is swollen and I know that I look redder in the face as well. Oh joy ! But hey, if that's all, I'll take it. Anyway, that's the fun of it all these last couple of weeks.

More about Radiation

The weirdest thing about them radiating your brain is not only the mask of torture that- after it's made to FIT your face, it shrinks so when you come back it's like being trapped under a elephant while being still able to breath. Though, even breathing does feel hard to do and you can feel your heart beat in your neck since it's all so tight while being hooked to the table. When they turn on the radiation, a blue light -in a line- crosses your face and you can taste it. It smelled to me like someone over cooked some meat in the microwave and it tastes like metal. I thought I was just imagining that but the nurse said most people say they can taste it. Very weird !!! I had a slight headache when I was done but that was probably from the elephant. I need to go tell him to sit somewhere else !

Radiation

Radiation is now all set to go. They tell you they will be making this mask to hold your head still while they do the radiation and I thought oh no big deal. Ha Ha After they made the mask, did a CT scan asked questions, they took it off, sat me up and asked how that was. I said it was like something out of a horror movie. How does it feel ? Like someone is choking you while they have your head nailed to a table. Luckily I'm the kind of person that can talk my self out of a fear if I have to. here's a video that shows what it will be like. http://www.youtube.com/watch?v=DWl3M81Vi90 the only difference in my mask is I don't have the back piece since they have a form fitting head rest and I don't have the front face strips under the mask. I'm not looking forward to all the driving and spending our summer going back and forth to concord. The Cancer Center is great, everyone is very nice and people treat you like they are your best friend or mom. The lady asked me what I'd like to be called when I came in for radiation. I said well Lisa ? Then my silly side kicked in and I said better yet, how about Your Majesty lol She said Oh we can call you that your Majesty. lol They said I could keep the mask when I'm done, ha ! I'll only be keeping it because it's the same stuff used for jewelry tools. I hate masks and faces and no way I would want that one otherwise. They said my chance of going blind is around 5-10% and since I never wo the lottery, I won't worry about that ! Knock on wood ! Might give me short term memory problems, puzzle solving troubles and forehead burn and hair loss. Maybe that will burn out the itching ? I hope ! Anyway, I start on June 11th unless it gets in the way of school ending ceremonies. If it conflicts with that, we'll start it the next week . I was going to bring in this for my CT scan but my printer was out of ink and wouldn't cooperate with me. I'll let you all know how it goes and if bald is beautiful ! Blick ! but if everyone else can do it, so can I.

Doctor fun !

I haven't written in a while and I really should but sometimes it all gets so frustrating and I really hate to be a whiner ! I had my eye appointment two months ago and my MRI and Neuro visit. the stuck the eye appointment in at the last minute so it made everything else late. The eye doctor pointed out how the surgery had made my right eye worse and and when I got to the neuro doc. He was so shocked that my eyes got worse, his mouth fell open. the other doctor walked in, he other doc. showed him the eye record, they were both visibly upset by the report. I asked a question, they said they would find out, ran out the door holding my eye report and never came back. So most questions went un-asked. They did say I needed 6 weeks of radiation to kill the rest of the tumor. they said surgery would make it worse and my left eye- the good one would end up as bad as the right eye. So I guess the doctors agree to disagree. We also saw the radiologist next month and he was very nice and helpful. said we could probably do the radiation when we wanted to depending on what todays appointment said. so today.. A interesting eye appointment today with the neuro eye doc. We were there to see one yet his understudy came in first. He was a real charmer ! NOT!! he smacked me with his prisms, the thing that covers one eye and then the table in the knee. He kept playing with the prisms two of them together and I tried to ask him twice what he was doing but he told me to be quiet so he could do the exam. when he got to the eye test he did the letters in the box that are projected on the wall. He got to some small ones which I said I could not see, he said guess. I asked how does one guess when the box is empty but he insisted so I said it says 1,2,3,4,5 He did the color test and if I didn't get i right he keeps pointing at it trying to get me to change my answer. He asked me if I had any troubles, I said yes, double vision, and I some times walk into things. He says well, no reason for that, your vision is fine. 20/40 so I guess I'm a liar. I was so pissed and so was my bf. the regular doc came in and answered our questions at the end but by then we were both ready to leave. I was very nauseous and tired of the guy. My bf told the receptionist that they needed to teach him some manners and how to treat the patients better. what a tiring day ! The regular eye doc again said that radiation wasn't a great thing to do because it can cause vision loss and he wasn't sure if I should do it or not. It again made me question what I'm doing. Where does this ride get off ? I'd like to quit riding the merry go round ! ~Lisa

The funny side of it all.

Yes, that title is correct, there has to be a funny side to it all or you find your self just crying all day long if you don't try and find some smiles now and then. I head in to the store with my family and I saw a woman look at me, gasp out loud as she clamped her hand over her mouth and she said Oh My god as she looked at my scar. It is huge and very noticeable. I laugh :-) I was worried this week that my hair wasn't growing back in since where they shaved it the second time on Thanksgiving, its only about a eighth of a inch long. I said something about it at the family gathering and my son pipes up well it is growing back mom, that gray streak you have right in the middle is about a inch long and spiked strait up. Thanks Joey lol I also misplaced something at the party then we found it and he announces that my memory isn't all that great since they played around in my head. Thanks Hun, what would I do without you to remind me. A while back I was bemoaning my misshaped skull and the doctor said it looked fine, then she was called out of the room. She came back in a couple minutes later and said Oh wow, your right, it is flat there. I can see it in this light better. I said thanks so much ! Today I went out with a friend for lunch. As we waited for the lunch, the lady behind the counter went to hand me my lemon aid. Wow, no depth perception and double vision make it hard to reach out to the same place she was. I looked like I was waving my hand trying to connect with hers. It does get me down now and then because I still can't see well enough to drive, I walk into walls and door frames, look drunk at times but I then remind myself... I'm alive, pain is going away and I can still do most things I enjoy. Life is good, you just have to look for it some times in a smile :-)
 Lisa
 I thought this smile was fitting since that's kinda how I look with my one bad eye that isn't working right.

Sleeping Beauty ???

Sleeping Beauty ? I think it's more like sleeping Frankenstein ! one day last week I was awake to get my son off to school and we both fell back to sleep for a bit but then he got off to school. I did wake up for two hours in the middle of the afternoon when Kevin was home between bus runs but fell back to sleep again at 11 am. Joey got home at 2:30 and was surprised to see me sleeping so after questioning me what I had for lunch and all, he made me a sandwich and juice and brought it to me. lol He's such a good young man ! I have to say there is a funny side to it all too. we went to pick my son up at school one day and as I sat there watching kids walk by I noticed the differences in how they looked at me. One little girl stopped in front of me and stared at me saying nothing the whole time she stood there. I said hi but i think it scared her so she said nothing. this weekend in the store, a woman walked by me, gasped out loud, said Oh my god and then clamped her hand over her mouth while her eyes grew wide as she stared at me. lol I try and joke about it so I can deal with it easier because if you can't smile about it, it isn't easy to get through the pain and stress of the every day life of it all. I did get my stitches out this week so I'm no longer looking like a porcupine with blue quills lol Now I have to wait for that appointment that will tell me if I get another surgery or radiation ! I'm hoping that it's just radiation and no surgery since my right eye is now worse than it was and if they do the left, I will be near blind. I'm not liking that thought ! Anyway....... We won't go to that thought !! Have a great day !!

Day 36 The Wound Whisperer?

Well at least that's what I feel like I need to be now, none of the signs that they tell you to watch for were evident on Lisa's first incision line, no drainage to speak of, nor redness, or puffiness, and no fever. One expects to see some minor bleeding if a scab gets knocked off by a towel.  The only thing I can figure now, is that, maybe, there should not have been any unhealed part of the incision after 30 days but, no one said to look for that.

So now we have a whole new type of incision to practice infection divination on, but damn it, I don't believe in divination, and have had a whole ONE experience to base my current skill level on.  It just seems ludicrous to me that such a critical observational task is left in the hands of complete rookies, and without a detailed, and exhaustive, list of every possible indicator that nasty little, malicious microbes have set up housekeeping.

 So now we watch again, this one is pretty much on the caregiver though, the patient can't really see their own head very well. So far it is a daily exercise in second, and third, and fourth.... guessing though, and it just seems to me it shouldn't be that way. There needs to be more definitive information available.

Lisa is still holding up remarkably well, the slowness of recovery is becoming an increasing frustration for her, but we talk about it, and hopefully we can find strategies for ameliorating it. She has actually been out to the workroom making some of the jewelry she made before the surgery. That is one hell of a feat considering she has no binocular depth perception. I just hope she doesn't barbeque a fingertip while soldering, perhaps it is a good thing she is still using small torches. She is still coming to terms with the constant fatigue, and this too is challenging to find successful coping strategies for, but she is an amazing lady. I can see the frustration, and hear it, in her sometimes, but she never externalizes it as unreasonableness with either Joey or I.  I'm a lucky guy.

Onward...

(hopefully I'll catch up on these posts soon, if I'm not mistaken this is actually day 42 since the initial surgery.)