Tuesday, October 30, 2012

Day 11

We are quite happy that the storm (hurricane Sandy)didn't wreak more havoc in our area than a mere 6 1/2 hour power outage, which we mostly slept through.
Lis' last day on steroids was Sunday, and it does seem like her headaches have been a bit worse since then but, what seems to bother her most is what she refers to as "the oddness" over most of the right side of her face, the visible signs of the surgery are all either stable or slowly decreasing, while her activity level continues to increase, as far as frequency, we are being very careful about the range of activity. All in all things continue to go extremely well, much better than expected.
Here's a photo from day 2 with the dreaded compression wrap.
So we're settling in, and still figuring it out, I'm still tending to want to do everything for her but, I don't think this is going to be a successful strategy for much longer, she is starting to want to do some of the food preparation, I may just have to relent on that a bit.
Oh and it seems the surgical team is impressed with how well things are going, Dr. Al Meftie has requested a picture of Lis for a presentation he is doing. We happily sent him one, that man is an incredible surgeon.


Sunday, October 28, 2012

ICU Video Day 2

I captured this video with the laptops built in camera, if I recall correctly this is about sometime between noon and two o'clock on Saturday, the day after surgery, about 12 hours to 14 hours after Lis arrived in ICU. I finally figured out why it wouldn't post here.

Saturday, October 27, 2012

Day 8 Circadian Conudrums

Does anyone really know what time it is?
Lisa certainly did not for at least the first 5 post-op days. She was consistently off by half a day, and sincerely, completely, mystified when I'd tell her it was daytime, and she thought it was night, or visa versa. The persistence, and strength of this delusion began to worry me after a few days but, then I realized her internal clock was off by half a day, the same amount of time she was under deep anesthesia, that's pretty interesting(well to me at least).
I'm not sure if this has anything to do with her inability to sleep the last two nights, as the amount of time in any given day that she sleeps has gone down, I thought, perhaps, her circadian clock was just out of whack but, when she gave up on sleep last night and came down stairs, she spent a little time on the internet, then went into the living room and laid on the couch. She slept well for a few hours, until I think the noise of Joey, the dogs, and I, probably woke her up. We're going to try the couch from the gate tonight, and see if that works better. I have a suspicion that it will because I think, it has more to do with the more comfortable, and higher angle, the extra support of the couch arm allows, than extra pillows on a flat bed.
The, in my opinion, radical Decadron (steroidal anti-inflammatory) taper is on, from 30 mg to 24mg, to 6mg, to 2mg, per day, in four days.  The fact that is a non-linear taper bugs me a bit, but then I am completely ignorant of the physiology/chemistry involved, and it seems to be standardized to the point they had a ready form to follow they gave me.
The more time goes by, and the more I read of other people's experiences, the more I think we have been incredibly fortunate thus far, and it seems the largest contributing factor to this, is that Dr. Al Meftie is a phenomenally talented and gifted surgeon.


Friday, October 26, 2012

Day 7, Figuring it Out

First full day at home, going to restart the mail, and pick up the last week's from the post office, then to the kennel to get the dogs. That should be interesting, so to will be managing them at the house. Calley, the white collie, will be fine, she is the mellowest, most gentle dog I have ever known. Alba, the smooth, sable and white is just over a year, and still pretty rambunctious, she can sometimes get into a room to room grand prix with Doughall the tri, male. We do have an "x" gate on the living room but I know Doughall is perfectly capable of jumping it. Not really worried about this, just something tp be sure to have thought out ahead of time.
Meals are the next thing on my personal checklist, many people have said they will be bringing food while Lis recovers but, I figure, I need to be prepared if on any given day no one does. I figure I'll start a crock pot meal in the morning, on each of the next 4 or 5 mornings, then if it's not needed freeze it, so we have a back up supply. Lunches are kind of a mystery to me at the moment, any suggestions for these would be appreciated. I'm thinking soup and sandwiches are pretty much a lunch time standard but, I also want to make meals interesting, and enjoyable, as Lis is not going to be doing much else for a while. Breakfasts are no problem, I got that, omelets, scrambled eggs, toast, will help with the "protein rich" diet Dr. Al Meftie emphasized.
The Decadron (anti-inflammatory steroid) taper starts today with the last dosage 2 days away. Lisa's activity level since getting home has been surprisingly high, she sat up at the computer for 2 hours last night, and has been over there catching up on stuff for the last 3 hours today, so far it doesn't seem excessive, but I'll be keeping a close eye on her.
Lisa is currently doing extremely well both physically, and psychologically, it was a rough moment last night when she got her first good look in mirror without bandages on but, like I told her before, I have never seen anyone make looking like hell, look so stunningly wonderful.


Thursday, October 25, 2012

We're Home !

yipeee were home ! I look like Egor now but were home !! ! I'm so happy. They said that I don't have to go back for 3 months and then when I do go back, I'll have another MRI and then possible another surgery on the other side or radiation. He said the surgery went well and my eye nerves look like they are doing well. Hurray !! I'm of course hoping for no more surgery and would rather just radiation but I'll do what it takes to live a full life with those that love me. Thanks for all that cared, it was well felt all the way to Boston !!! Lisa & Kevin ♥ (the best caregiver ever !)


Just got back from the hospital, and we are cleared to depart the fix on the outbound leg. We are going home!! Doctor is going to call us about when he wants to see her again. The one bit of sobering news, pretty upsetting to Lis in the moment, was the possibility of more surgery in 3-6 months but, that is unknown and not to be determined for 3-6 months.
We are coming home a bit early and they emphasized absolutely no strain, and to be sure to eat a very high protein diet, Lis must take great care as the wound is still fragile.
So farewell Boston, hospital and hotel rooms, we are outa here. Next post from NH.


Wednesday, October 24, 2012

One Eyed Lisa Here !

If only I had a photo for you all lol I tried many times but gave up. Kevin Is taking great care of me, I couldn't ask for a better care giver ! I'm doing well, slow walking and slowly getting my eye sight back. Kevin cracks the whip to keep me walking so no clots will form and then worries he's being mean. :-) Have I said lately How much I love this guy ? He's the best and has a great family tooo. Leo called to see how I was and I've chatted with my son and family. We hope to get out of Dodge tomorrow so we can loose some of these bills. I think we've spent 800.00 on hotels already, eekkke ! Anyway, I'll call soon when I get home with my lovely man. thanks everyone for all the help, I couldn't haven't done it without everyone. thanks, Lisa

Day 5 Re-Wrap Complete

Back from the hospital, Lisa did wonderfully on the trip, I wheeled her down to the neuro-surgery clinic, then she walked all the way back to the elevators, about 5 times the distance of our hotel walks.  The nurse said Lis is doing excellently, she was much more gentle about the compression wrap than the "cranial tug of war guys" as Lis calls them. I got straightened out on the activity philosophy, and I'm glad I listened to what many people said and didn't push the distance. The activity is more important than the distance, so as long as she is up and moving around every couple hours we're all good. So we are back to green across the board, running hot, straight, and normal. We meet with Dr. Al Meftie tomorrow at 1030 hours, and he will either give us clearance to be enroute home, or continue holding at Boston. I think Lis is doing exceptionally well, and doing a marvelous job of being cooperative with me. Oh and we stopped and got milkshakes on the way back. :)


Day 5 All's Well, Well Almost

I went shopping yesterday and found plenty of stuff I can manage here, especially as Lis said she can handle sandwiches on soft bread. The deli at the super Stop and Shop, across the road had plenty of tasty lunch meats, (chipolata chicken breast, YUM). I also found plenty of hearty soups and stews, in microwave containers, as well as bananas, strawberries, ice cream, and chocolate. Between these and search later today to see where I can get Frappes and Smoothies locally, I think we will be all set.
Lisa said to say "Hi Everyone!".  She is much clearer now when awake, the first couple days her memory was doing bizarre  things, okay well clearer but still pretty weird, she still does not track diurnal cycles very well, she just came back from the bathroom completely unaware we had spent another full night in the hotel.

Well we almost made it without a hitch, when I got Lis up for a walk last night, I noticed that her compression wrap had slipped. Immediately called the hospital and talked to the amazing Sarah, Dr. Al Meftie's nurse(more on her later). She said that we would have to come in this morning to have it rewraped, that is a bummer cause it hurts. What she said next nearly made me sick, "Kevin you have to push, pull, whatever, to get that back to its original position. What could I say but OK. I knew it was going to hurt, and it did, and I absolutely detested, loathed, hated it, but I gave Lis a full dose of codeine, waited 40 minutes, then did it. She was really very good about it, even though it took 4 or 5 separate manipulations.

So we're off to the hospital, and maybe we can get something more definite about our ETD for NH.


Tuesday, October 23, 2012

Day 4 Good Morning!!!

Day one of at least three full days in a hotel, it is certainly great to be out of the hospital and for a whole raft of reasons, but two things the hospital was good for were, bedside med, and food delivery. Meds are not so much of a problem, I'm going out after rush hour to pick up Lis' OTC meds, food on the other hand that's a wee bit of a problem.
Challenge 1:
There is only one microwave in the hotel, it is downstairs and very small, we do have a dorm refrigerator. Chewing anything tough, or hard, is a problem for Lis' the entry path to Bob (her tumor) required cutting most of the mastication muscles on the right side of her jaw, finally there is my own ignorance, I have been for all my life, nearly a complete carnivore, and most meat is off the plate for Lis, at least with current preparation facilities, so what exactly would omnivores eat within the above restrictions?
Challenge II:
This much I know absolutely, Lisa must get up to walk at least 5 times a day, well maybe 4, if she instead sits in a chair and does some lower leg raises, that's my own idea, the first is the hospitals. I totally get this, it would be penultimately stupid to have such an incredibly successful surgery ruined by a preventable stroke caused by a blood clot that formed in the leg. Now Dr. Al-Mefty who is perhaps the best skull base surgeon in the world right now(not my opinion, although I don't doubt it), has very aggressive post op activity notions, pushing for a resumption of normal activity levels ASAP.
It is hard for me to argue with such a professional. On the other hand his expertise is in the OR, there were some who thought some of his post op strategies were a bit extreme. This is really not fare to a caregiver, and I'm not at all sure there is a solution to the dilemma but, I know there ought, at least be, more definitive guidelines. I love my lady dearly, the idea of causing her discomfort or pain is completely repugnant to me, on the other hand allowing her to come to catastrophic harm due to inaction on my part is absolutely unacceptable. There needs to be more information on this:
How far do we walk?
How do you tell how far is enough without being too much? (all cases are different there could not be a standardized chart, there ought to be some evaluable, observable criteria.)
How much time should be spent sitting up and awake?

Well I have to git to the stores, and Lisa is stirring so time to play drill sergeant (her term).


Day 4 In the Wee Hours

O.K. so for the last 3 days Lisa has had someone checking on her every hour or so, seems like a pretty good idea, after major brain surgery. The problem is, unlike shift nurses, I have to sleep on duty, so how to wake myself up no more than every two hours or so, and without disturbing her in the confines of the same hotel room? I sat here for over an hour last night trying to figure this one out. Trying to put the laptop on the table between the beds, didn't work, wouldn't fit except in precariously balanced positions. Hmmmm, if you come up with another solution, let me know. As for me, I'm going to have two more cups of water and go back to bed.


Monday, October 22, 2012

Day 3 Phheeewwww

What a day! Lis is resting comfortably here at the Comfort Inn. The last few hours at the hospital were pretty hectic. The pharmacy balked at filling some pretty critical medications and it took and hour and half and a number of trips back and forth to the pharmacy which I swear kept moving farther away. But we're finally here, and I've got to set up Lis' med schedule,  so this is short. I also need to figure out how to wake myself up, without waking her up, so I can check on her through the night, that's going to be a bit tricky.
What is absolutely wonderful, is my Lady love is here by my side, she is on a strong road to recovery, and there is only one direction to go from here...


Day 3 Surprise, Surprise!!

Well it's definite now, they are writing Lisa's discharge papers, I have the hotel confirmed for another night, we're just waiting on the pharmacy, and the exit briefing. I hope I can remember all the stuff I thought of posting about this morning before all that got knocked out by hearing of a possible discharge, when I got here this morning. After talking with the resident, and extensively with the RN, I feel a bit more comfortable, it's still a bit scary though.


Day 3 Predawn in a Boston Apartment

I am sitting in the apartment of a complete stranger, I wouldn't even know this guy's name if it wasn't for the note he left on the counter outlining the idiosyncrasies of his dwelling space. He is the boyfriend of a lady that knows my Lady from her Facebook page "Brain Tumor Warriors". In what is perhaps the most stunning act of humanity I have ever experienced, these two exceptional humans sent us a key to this apartment, and basically gave it to us for as long as we might need it during our stay in Boston. As I sit here watching the sun come up over a Boston hillside, not even a 5 minute drive from the hospital, I am stunned to tears at this magnificent display of compassion. It would be a complete exercise in futility to attempt to encode in simple words the depth of our appreciation for this act, or the profound respect for such a display of human kinsmen-ship.

I had more to write about this but, I was in for a big surprise when I got to Lisa's room, there seems to be some talk of releasing her today.

Sunday, October 21, 2012

Day 2 Thank You All So Very Much

We would like to thank you all very, very much, for reading and replying to this blog thus far, I just finished reading all your comments to Lis, and your concern, and well wishes, mean more to both of us, than words can adequately convey. it's now 1530 hours and Lis is asleep again, she sat in the chair to eat lunch and that is when we got to talk the most. I now have a picture of her as well as the video from the other day, but now the problem is, we forgot to bring the USB cable! The following paragraph starts when I got here this morning, I wanted to move our thanks to the top of the post.

It is now the second day after surgery, I'm back at the hospital, Lis is out like a light, at first I was a bit concerned, as she was less rousable and responsive to my voice than last night,  but then her nurse came in, and I now understand why.  She has for some reason had her compression wrap redone twice, (I have never seen her so vehemently detest anything before, it must be an unholy bitch) been up at the sink washing up, and done a lap around the nurses station, a 25-30 yard walk. Besides all that there is suddenly a great, gaping, empty space behind her eyes, that everything in there is trying to figure out how to deal with now (um colloquially speaking). If you think about it, from an evolutionary perspective, there is absolutely nothing, not one single selective pressure, that could have in any way equipped us with any sort of mechanisms for handling such an intrusion. There have been plenty of survived knife, sword, spear, and bullet invasions to have selected for mechanisms for dealing with it, but the cranial cavity has been largely sacrosanct, so you gotta imagine the brain is like, "Hey! What the hell!?" So yea, Kevin me boy, if she wants to sleep, let her, you have a lifetime now to talk to her."

Well this is new, I just ordered lunch for her from "room service". There is actually a menu oops already talked about that, funny I'm yawning more today than in the last two days. The nurse got here just before the lunch tray to announce it was time for Lis' second of 5 walking events. I was wrong it is not just around the section of the floor she is on, it is out of this section down the hall to the opposite side of the tower and back, so more like an 80-100 yard walk. She is still  a bit shaky on her feet but, sounds like she will get lots of practice before her release in 3 or 4 days.


Saturday, October 20, 2012

T plus 22 Hours

Well we are out of ICU, which is a little concerning, for one thing it means I will be booted out of here at the end of visiting hours tonight. Now on one hand that is a good thing because it means I will be able to get some restful sleep. On the other hand it means leaving my dear, sweet, notoriously discomfort-under-reporting Lady to her own devices. Not happy.
Although she is still making an Olympic sport out of sleeping, and the staff here is very good, so I'm just going to have to get over it. Lisa is thus far doing extremely well psychologically, her right eye has completely swollen shut now, and I seem to recall now reading about that being a delayed event. Glad I got a video capture off the laptop camera this morning before it really started. I'm still trying to figure out how to post it here, it gave me an error when I tried.

Lisa is currently enjoying scrambled eggs and a strawberry frappe, she is on restricted water based beverage intake due to their role in swelling. The food here is pretty interesting, it is a room service menu, pretty much equivalent to a fair quality city hotel. She can order quite  a variety of stuff, although one of the things we either missed, or was diplomatically not mentioned prior to surgery, was that they would be cutting some of the major jaw muscles on the right side of her face. I have evoked every possible promise I can from her that she will report any and all discomforts. It's certainly not as bad as leaving her go to surgery alone, but neither will it be easy.

All and all folks things are going extremely well, these are really minor things compared to the worries of a few days ago, gotta watch that getting used to a certain level of anxiety and thinking any stressor automatically keys that same level. I'll tell you something folks, we certainly come with some sloppy software.

T plus 20 Hours

Well that was an exercise in futility, contortionism, and by conscious choice my somewhat warped sense of humor. I really don't know what I was thinking, Saturday afternoon, major city, and regional hospital, d-uh... the little ICU waiting room was packed. So I walked out to the little hallet that houses the bank of 6 elevators, and has a little 3 foot padded wooden bench, with a side table, below  the window. Laid down on the bench, crossed my legs onto the side table, hooked my thumb into a belt loop to keep my arm up, and actually fell asleep. I would occasionally, and vaguely hear bunches of people talking, and elevators dinging, but oddly, unlike the people on probably half the hallways on this floor, I never heard myself snoring, which in that position was guaranteed to be naturally loud, and amplified by the echo chamber made by the hall, given I woke up with my mouth hanging open and very dry, I can only imagine the cacophony. My watch indicated at least an hour had passed, I pressed the down button, and got pretty odd looks from the people on the elevator when the door opened and I was standing there by myself laughing out loud, only to have it redoubled by their looks to the point of what must have looked like borderline hysteria. I think I may have scared them a little. I did manage to apologize about halfway down, and mumble something about sleep deprivation. Went over to the "au bon pain" and got a chocolate chip brownie, and a large French roast, and I am good to go. I also think that the little nap was cathartic to the brain state change from hyper-stressed, to marked relief,  and yea a good portion of sleep dep thrown in on the side.
Well they just came in and woke up Lis, it's moving time.


T plus 16 Hours

They've come in and put a tight wrap skull cap bandage on Lisa, and she has gone back to sleep, I want to be around when they transfer her to the general floor later, so I'm going to nap land in the waiting room.


T plus 12 hours

Well the chief surgeon was just here, and it turns out my concerns for the left eye were founded, it is not a matter of just, when it starts working again but, if it will, and it will take months to determine. He said there was no way around irritating that nerve, but he assured me there was no actual damage to it, so the odds are in her favor. He said otherwise she is doing exceptionally well. He also tasked me with making her breath deep and cough every half hour. I know she'll understand, but it doesn't make it any easier to be a royal pain in the butt.


T plus 10 Hours

Well that was basically the Hospital's teaching rounds, but there is some new general information updates. The medical opinion continues to be that she is doing very well, they anticipate moving her out of ICU by sometime this afternoon. My worries about the right eye may be baseless, it seems this type of immobility is not uncommon when that nerve has been disturbed. It makes sense though that eyelid is not working either yet, she actually thinks that eye is covered. She was just awake again for a few minutes and has made the transition from down right loopy, to just groggy but completely lucid.

This post has ended up spanning a few hours, been a lot going on here with shift change, and IV removal, she has been awake for 5 minute stretches and although still very soft spoken, responds now in complete sentences, and demonstrates normal levels of recall.  Looking good.


T plus 6 Hours

0400 put my big boy pants on and went back in to see Lis, she was much improved but, still about as loopy as the rings of Saturn, she thought it was still Friday, was surprised to hear the surgery was over.  When I asked her if she was in any pain, she said "My head hurts." When I asked her how much she said, "A little." Well knowing Lis, I went for the numbers and she told me 8, I had the nurse there in two minutes. She responded directly to my questions though, made direct one eye contact with me, and I told her I'd be in the waiting room, and if she woke up to have the nurse call me.

The nurse told me she had a CAT scan, and that the doctors would be starting rounds in about an hour. So I went down stairs had a couple cups of French Roast, and a  chocolate chip brownie, and I'm good to go. I'm actually sitting now beside M'Lady's bed while posting this and she now looks like she is just sleeping normally.

So far there is only one sign of a problem, the fellow told me that they spent a lot of time working around the nerves that control her right eye, and although the optic nerve seems to still be functioning, and maybe even at pre=op levels, it doesn't move at all, well it wasn't about two hours ago. The doctors are about 2 patients away right now, so I'm going to wrap this one up.


T plus 90 Minutes

2200 Hours surgery officially ends, and I transfer my little portable personal space up to the ICU waiting room, much smaller but, it does have a recliner, and a couch. Anesthesiologist stops by, fills me in just how stellar of a performance Lis put on through surgery, says it will probably be an hour or so before I can see her. About 15 minutes later the chief surgeons fellow comes by and gives me a bit more details of the surgery and how she is doing. At 2330 hours they let me in to see her. Man they really should warn you better on what to expect. Visually she looks far better than I expected, but man did I have to do a desperate grab for, and put a full nelson* on, major panic. Ninety minutes after 12 hours of deep anesthesia, a person does not act just loopy, they act as if they have major brain damage. It so happened a doctor was there at the moment doing a standard, office style neurological eval, when he was half way through he looked at me, and for the second time in 24 hours I had a medical professional grab my arm.  "It's .okay, this is entirely normal" I looked at her vitals, and made a very conscious note of how unconcerned the medical professionals in the room looked, and realized he was probably right. I held Lis' hand for a bit, made sure she new I was there, to the degree possible, gave the nurse her chap stick and told her it was probably q-24, and that I had that on good authority(Thanks Liz). Went Back to the waiting room, and after about an hour of reading, managed to actually fall a sleep for an hour or so.


* A wrestling hold in which both hands are thrust under the opponent's arms from behind and then pressed against the back of the opponent's neck.

Friday, October 19, 2012


Lisa is headed for the recovery room, in these cases ICU, just talked with the surgeon, and his synopsis was that the surgery went very well.  They got a lot more of the tumor than they had expected to, it is off of both optic nerves, and her carotid artery. All of her vital signs remained strong throughout the procedure. He made sure to emphasize surgery is one thing, and recovery entirely another. There is no way to anticipate how long it will take for her to feel well again, or even if some of her symptoms may be a bit worse. That could take up to 6 months to determine. but there were no catastrophic events.
She will be considered to be in critical condition for the next 24 hours probably, so everything will continue to be very closely monitored, but go to bed everybody, SHE MADE IT!!!


Oh and btw, this is the last post till tomorrow.

Go For Re-entry

Just got secondhand word from the OR, the surgeon is initiating procedures for Lisa's reentry to consciousness, aka begun closing procedures. I did not personally speak to the nurse so I do not know what stage of the procedure they are in. In neurosurgery there will be multiple stages beginning with fabricating new dura mater* from other body tissue as well as some magic ingredients**, then replacing and securing the cranial bone removed for access, and reattaching any muscles necessary, and finally closing the epidermis. As you might guess this could still be some time; however, she is on her way back folks, the recovery vessels have been informed to expect splashdown.
Next update will be when the surgeon comes to tell me how things went.


*The tough fibrous membrane covering the brain and the spinal cord and lining the inner surface of the skull. It is the outermost of the three meninges that surround the brain and spinal cord.
 ** man, I know I'm tired when I resort to that phrase.

On Course, No Anomalies

Update from OR as of 1700 hours (5:00pm), everything is proceeding well, Lisa's vitals, blood chemistry, and all other physiological variables being tracked, continue to be as strong as initial readings. Resection of the tumor continues, and will continue until they get as much as they can get, or some anomalous readings of her physiology  causes them to retreat. This would be unlikely given her resilience thus far. The nurse said it would be, at an absolute minimum another 4-5 hours. She has been under full sedation now, 1800 hours, for 9 hours.
Take some cleansing breaths folks and try to relax, the way things are going right now, the longer they are in there the better it is. I really don't anticipate her being out till after 2200 hours.
By the way, if you don't like the 24 hour clock time......too bad,  ;) it makes the arithmetic easier for me, and perhaps it gives you a wee bit of distraction.
Really folks, remember, right now longer is better.
Sorry for the delay in an update, I'm supposed to be trying to get some sleep during this time. I'm sure as hell not having her laying awake in recovery without me there.


ETA Sorry folks, I just reread this trying for an objective POV and realized, if you were not me, or didn't know be pretty damn well, this may have come off pretty snippy. The crack about the clock was actually supposed to be funny, and the remark about the sleep was meant to be ironic, as in, "Yea right, sleep. Yea I'll get right on that." BTW have any elephant tranquilizer??

We Are Transcranial

Got a call from the OR nurse I met earlier, Lis is stable, doing very well under anesthesia, they are transcranial and have the target in sight. Goodbye Bob! and hopefully good riddance!!



Well Lis is off to OR, it is an incredibly hollow, scary feeling to watch the most precious thing in one's entire universe rolling away to such an event. After a few minutes a nurse came over, took me by the arm, and led me to the elevator to this waiting area. I will post if I hear anything.


T minus 1 Hour and holding

Lis woke up this morning with some swelling in her knee on the side she had the angiogram, so when the surgeon came in, he ordered an ultrasound exam to be sure there are no blood clots in her leg. Lis slept a little bit last night, I'm not sure how much, she snuck into  the other bed because, she said, every time she moved I would ask her if she was all right. They opened an artery to do the angiogram yesterday, so naturally knowing just enough circulatory physiology to get me in trouble, I was perhaps a wee bit, on the far side, of hyper-concerned about it. So she is having her leg ultrasonically scanned on the other side of the curtain, and I'm posting this with arterial symphony for background music, it also sounds at times like sound effects for "The Outer Limits". Surgery will go on; however, if they find anything concerning, I think they said they would install a filter in the blood flow from her leg.
When we got to admitting and she changed into a gown and got in the bed, she had the total deer in the headlights look, almost lost it then but made a joke about the new antiseptic wash they use that is blue rather than the brown stuff we're used to. No more delays please.

Thursday, October 18, 2012

T minus 10 Hours

All checklists complete, all criteria passed, we are go for surgery at 0730 hours tomorrow. Lis is resting comfortably, the angiogram went well, they have good charts of all her neural vascular structure, we are in the best hands possible, and yet fear is bouncing up and down in Lis, and my veneer of calm assurance is getting thin. It is a good thing the surgery is tomorrow, I do not know how much longer we could have lived with the uncertainty.


T minus 22 Hours

Good Morning Everyone, it's 0800 hours, and Lisa is going in for her angiogram.
We had a wonderful nights sleep, it's amazing how comfortable a hotel bed is after 12 hours of hospital appointments. Lisa is doing well, her attitude is good, and we have come to a point where we believe we have every reason to be optimistic about the outcome of surgery.  We have also, on the  other hand, been made to understand that the surgery is going to be a major traumatic event, and that recovery time may be long. The nurse has told us not to be surprised, when she wakes up she will feel like she has been beaten up, thrown down the stairs, and run over by a truck but, also assured us not to worry, they are very good at pain management. She wants to be sure we don't mistake this for the surgery not having gone well. This also means that I will be spending every minute I can by her bedside, while she is in ICU this will mean that I will, most likely, not be using my computer, so I want to assure you all that I will post as often as I can, but please do not worry if there isn't much on  Saturday. Once they move us to a regular room I will be able to use my laptop again and will make regular updates.

The family liaison area (read fancy waiting room), that I'm in now, and will be tomorrow, is pretty nice. It has a single cup coffee maker, electrical outlets for  the computer, and even more quiet areas further back, with recliners in them. One whole wall is large windows, it is so weird be sitting in a city with crazy huge buildings all around.


Wednesday, October 17, 2012

T minus 35 Hours

Hello everyone from Brigham's and Women's Hospital, and the new voice of "Our Brain Tumor Jouney:, at least for a while, it is 1715 hours which makes it 13 hours since our wake up this morning. Lisa is currently in her pre-op physical and will probably be there another hour or so. After that she has two MRI's and then we're off to the hotel. We have an incredible offer to stay at a local studio apartment that is within a mile of the hospital, and I will probably do that the nights that Lis is  in the hospital but, when we went by there this morning we ended up having to park three blocks away, and although the apartment is absolutely an amazing study in efficiency and genius level interior decorating, Lis was so freaked about parking and the proximity to a bad part of town, that  there was no way we could stay there pre-op.

Tomorrow we have to be back at 0615 hours for an angiogram, They will access one of Lis' arteries in her leg and slide a catheter (oops Lis got out early, off to MRI) up to different locations at the base of her skull and pump in dye, and get a total map of her neural circulatory system. This is very good, shows the surgeon what vessels are feeding the tumor, what vessels may be taking over some of the load for her compressed carotid artery, and what vessels they can block if necessary. This will take about another 6-7 hours at the hospital but, then we get an 18 hour break before reporting to mission control the next morning.

Currently all systems are go, we are green across the board, she should enter OR at 0730 hours Friday morning, my only disappointment with BWH thus far is that I've been told that I should not expect any updates until she is  out of OR, I had expected at least Q2 hour sit reps, so sorry folks but I probably won't have much to say Friday. If I hear anything I will post; however, I just had a discussion with the surgeons nurse, and she told me he has staff scheduled until late Friday night specifically for our surgery. I will try to post when she is out, I may have some time before they let me into see her, but I'll warn you right now, it may be an incredibly short post.

We have nothing but high praise for Brigham's and Young's Hospital, everyone today has been incredibly kind, and you know, you can't stand in a hall here looking lost for more than 20 seconds, before someone stops and asks if they can help you find something. So yea it's been a pretty stressful day, Lis is pretty nauseous from all the moving around, and bright lights.

I also want to sincerely thank all of you who have expressed concern, and are thinking about my Lady in this time, it really means, well, more than I can say to both of us.


Tuesday, October 16, 2012

It Starts tomorrow !

We leave at 5 am tomorrow so we can start the day of many tests tomorrow. I have a EKG, MRI, CT scan, metal test,a hearing test, pre-op clearence with blood tests and physical. A couple of orbital x-rays for who knows what. --Oh a UTI test too, lets not forget the one I'm most worried about !! If I don't pass the UTI test, surgery gets canceled and we start over again. I also can't eat at all that day till the evening which will sure save on money since I can't eat Thursday either because I have a angiogram and then a PICC line will get threaded into my veins at my heart. She did say I could eat that night as well and then Friday no eating again and surgery at 7am till 7 pm or later. I don't think the lady that just called really thought about what she was saying. First you'll have your angigram where after they shave it, they will thread a big catheter in your groin area into a vein . They'll get some great photos and then you come get your PICC line from me. I said Photos ????? Um sounds like fun ! lol What a fun week we will have !!

Finally ! We have a date !

Finally ! We have a date ! Written Oct 3, 2012 4:09pm by Lisa Whitten My insurance came in this Monday and I made the call and had the first appointment today. Talk abut a slam bam thank you mame ! we took 3 hours to get to Boston and check in the hospital for meeting with the doctor. He said the tumor is making me go blind. I could leave it alone an go blind and then worry about the other troubles as well- crushed artery which can cause strokes, my face going numb, loss of taste, hearing and many other things or I can take door number two and have surgery. Its risky in that I could loose my vision that way, or it could just get worse from the surgery plus all the other things that can happen with surgery but more likely it will fix the eye sight or at least make it more stable. Surgery is set for Oct. 19th we have to be in Boston a couple more times before then to have more tests- a hearing test and then the stay Thursday for the cerebral angiogram the day before surgery. They will have us stay in hotels for a week or longer till they know I'm good to go home and then we can return. It will be very costly that's for sure ! but it's the best we have and great doctors as well. thanks everyone for all the support through this, I think it pushed us into the best doctor for the job !

the latest plan

the latest plan Written Sep 15, 2012 8:16am by Lisa Whitten so Thursday I started calling around because I'm always called at the last minute and then left hanging all weekend so I figured I'd start a day early. I found out that the doctor I was using has officially left the hospital for good. So after many many tears and calls I finally found out the hospital was putting something together to make it so I could go out of state. (There is no doctor in the state of NH that does my kind of surgery because it's a specialize and dangerous surgery). it's a insurance for someone with a life threatening illness. I'm not sure how we will ever pay for it because it ain't cheap at $500 a month and a deductible of $1000 but we will figure it out some how. so now we wait some more while it kicks in and surgery is said to maybe happen some time after October 1st. Now we have to figure out where it will happen and when. thanks everyone for the support you've been giving me through this stressful time ! It means the world to me.

Tufts says NO

Tufts says NO Written Sep 8, 2012 1:17pm by Lisa Whitten well, Tufts called me right away because it's now a rush to get it done since the wait is getting too long to be safe for my eye sight. So the woman talked to me really quick and then asked to quickly chat with the finance department because I have no insurance and they wanted to know my info. so Mrs. Rude (not her real name but I'm thinking she should get it changed) in the finance department gets on the phone and says we don't do that for out of staters. We need half up front and the rest right after surgery. I stammered that I couldn't have surgery then so she hung up on me. so now, I'm back to no surgery unless I come up with the cost - which ain't going to happen ! it's a 10 hour brain surgery which will be well over 1 hundred thousand I'm sure. My hospital is scrambling to figure out what to do so maybe they can figure it out but I'm not holding my breath right now. A friend had me set up a chip in account for medical expenses and it's here but I feel weird so no worries if you can't do anything. it's in the top right corner. http://glenshire-shop.blogspot.com/ If they do agree to the surgery, it's now further away. I really hope they do so I can keep some eye sight because it gets worse each day and it will be perment if it's not fixed soon. I hope to get more news this week. I hope !

Dartmouth gives up.

Dartmouth gives up. Written Sep 5, 2012 2:20pm by Lisa Whitten Just got news. They are now transferring my case to Boston. They still don't know when my doctor will be back so they are giving up on him. Now I will go to Boston Tufts hospital and have to use this doctor I don't know and they are trying to figure out if they will take my lack of insurance. I'm in tears. This is just crazy !! They hope to call me this week or soon to tell me what they find out. I hate driving into Boston ! Anyone have a couple extra hundred thousand laying around ?? Ok, I'm going to go cry in the other room and watch a stupid movie that is mindless so I can get a grip.

Finally Some News !

Finally Some News ! Written Sep 1, 2012 4:41am by Lisa Whitten They had told me two weeks ago that the head of Neurosurgery had taken all my records to look over so he could figure out what needed to be done. So yesterday, I called the doctors office and asked to speak to him instead of my regular doctor. after a few minutes I busted out in tears hystericle about how this was just making me a mess with the not knowing what's going on and with my list of upcoming things for my sons school and other life events, how do I ever know what I can do and what I can't. She apologized and told me she'd have him call. And he did !! At almost 7 pm he called, they are putting together a team to deal with my tumor and he said a couple of times how difficult it was and they wanted to make sure they had all they needed to get it done. He assured me they did have other doctors that can do the surgery such as the doctor I started with. He said he will call next week with the info of when they have a plan. so it sounds like maybe in the next couple of weeks ? we shall see. thanks everyone for waiting with me- it's been so super stressful for me !

the unknown

the unknown Written Aug 21, 2012 12:00pm by Lisa Whitten I almost feel stupid for telling people I was having surgery when now, I have no idea what's going on. Supposedly, I was going to find out today what was happening. Not so. I called and I think the secretary is getting a tongue lashing by patients because she was very upset herself and apologetic. I asked in a round about way if he had gotten hurt or a family member died and it sounds like it was a leave done by the hospital not the other way around. I'm not sure if that's reassuring or more scary ! She did think he would be coming back in time just no one knows when. So now the head of the department has my paper work to figure out what to do because if they wait too long, I will loose more eye sight. Its getting worse each day it seems to me and it's scary- the thought of not being able to see at all. We put our whole life on hold for this, canceled summer plans and got ready for all this mess and now nothing. Its not so easy to go get a new doctor because these doctors know my case for the last couple of years and well, I'd have to start all over again. Ugh !!!!

Surgery Canceled !!

Surgery Canceled !! Written Aug 8, 2012 9:04am by Lisa Whitten They just called and canceled the surgery. The doctor is on emergency leave or something weird. Now we get to rearrange everything again, dogs, kids, work etc. They will call back when he can do the surgery probably in two weeks she said. Right when the school year starts and Kevin starts work again. Going to be a tight year for funds that's for sure !! Lovely !!


emotions Written Aug 1, 2012 3:15pm by Lisa Whitten It seems that my emotions are in a bit of a upheaval this week. I'm keeping it all together and then someone calls Kevin to ask how I am and I loose it. Then today my dog sitter calls after her car breaks and I fall apart. I guess I like organization when it comes to being ready. Everything taken care of and I know how everything will be done. Have that change and I'm a mess till I have it fixed again. I'm glad right now that people never come to my house since I'm a slight basket case. I hope this disappears soon, I don't like the stress it brings along. I need to find my headphones so I can listen to the CD my friend Adria suggested. Lisa

titanium update

titanium update Written Jul 26, 2012 7:33am by Lisa Whitten So far so good with the arm test on the titanium and not so good with the earrings. Both ears got infected from the ear wires made of titanium so much so that they had to be removed. I guess i won't be wearing earrings any time soon like I was hoping. The arm test is fine. A little itchy but that all. Not that I'd like a itchy forehead the rest of my life but I could learn to deal with that if that's all I will get. I'm waiting for the nurse to call back with what she thinks about it all.

titanium testing fun !

titanium testing fun ! Written Jul 23, 2012 8:50pm by Lisa Whitten well, we couldn't find any test for titanium allergy that the hospital felt comfortable with so they have me doing some research here on my own. I'm wearing earrings for the first time in 15 years ? Titanium ear wires. they itched at first but they seem ok now. I was also sent some oval titanium disc's that they wanted me to put on my arm and then wrap up with a ace bandage to see if I get blisters and itching. Leave it on for a week she said and we shall see what my reaction is to them. Time is getting closer and closer to the date of surgery and I'm getting more and more worried. Kevin see's it and takes me out to distract me with some movie or shopping to fill the freezer. Batman made me nauseous ! but it was a great movie anyway.

We have a date !

We have a date ! Written Jul 12, 2012 8:27am by Lisa Whitten we came home yesterday and a quick run out the door and wouldn't you know, that's when they called. My surgery is set for Aug. 10th. I hope to be up and around by the 29th since that's when school starts. Now I need to get my pj's and slippers for my stay and make sure my house sitter will be ready for that time. It's perfect timing since she had plans on the 18th for her daughters wedding. I guess I better get my headbands done too to cover that scar. Anyway, I'm glad to have a date now.

hurry up and wait !

hurry up and wait ! Written Jul 10, 2012 10:36am by Lisa Whitten the doctors office forgot to call yesterday so I called them. the secretary had left the office so they left her a note. today she called at 10 am. How is September 4 she asks. I was told it would be done way before then so she will wait and ask the doctor who is in surgery all day so maybe tomorrow we will find something out- maybe. Kevin says I have all my fears wrapped up with a band and one little thing changes and boing, it all has to be adjusted again to keep it together. That's a pretty good description ! I'm trying to keep smiling, not worry and get up set, I wish they would hurry up so I know what the hell is going on !! ☺

todays appointment

todays appointment Written Jul 6, 2012 6:09pm by Lisa Whitten Went ok, more scary stuff to be sure. I could loose more eye sight, I could go blind.(but not likely) I could get more double vision blah blah blah ! I will probably have to have radiation when their done removing what they can. The surgery is a all day surgery, I'll be at the hospital 4-5 days and get a lovely hair cut while there lol we find out next week when they can possibly fit me in soon but first they have to figure out if I'm allergic to the metal they use to put you back together. I'm allergic to all the other metals so they have to test it first. They were a bit thrown off by this but he said they will call me Monday with a possible date.

Getting ready

Getting ready Written Jul 3, 2012 10:28am by Lisa Whitten Got my Will done last night, my Hospital living will and all that sort of junk. Its stressful thinking of that, but it has to be done. Now I'm making sure the house is acceptable in case anyone shows up here while I'm healing. lol ( love me, love my mess) Its hard to get anything done since I'm still worried. I'm doing more thinking than cleaning lol ♥♥ Also a note about flowers- If by chance, anyone decides they need to send some (and I'm not suggesting that anyone needs to) I like feet on my flowers. I hate to see them cut off in their prime. I'd rather plant them so they remind me of who gave them to me. If I can't plant them, my wonderful family will help me or my friend that is a gardener.

More waiting

More waiting Written Jun 27, 2012 5:41am by Lisa Whitten well, I was informed that I have to wait till next Friday the 6 th for my appointment with my new doctor to then find out what his plans are for me. I did have a friend call yesterday, She had the same doctor and her tumor is almost like mine but a bit smaller I think. She told me how her's was cut out and where it will be done. Its the not knowing that is scary so it helps to know. I think everyone will have to call me Franken woman when were done with this. They will cut me open ear to ear and up over my forehead. (if mine is done like hers) She says it looks like a old mans receding hair line when their done but with the scar to boot. Maybe we'll have him put on some bolts for Halloween fun lol I'll have to make myself some scarves to hide the scar since I don't think a comb over will help. She said it gets tight when it heals and it's a free facelift lol My son James would have compared me to Jack Skellington and Sally from the Nightmare Before Christmas, he loved that movie. Laughing about it is the only way I can make it not so scary so laugh with me please. Otherwise, I will be in tears again.