The Never-Ending Frustration of Doctors

Well, I didn't get into this part of the story last night because I was tired but I figure I'll talk a bit about it today. Now this is not the first time that we've been led astray by a doctor. We seem to attract them. However, one of the things that struck us square on the day before John's surgery was that this was NOT the procedure we initially wanted. There were some well placed words that made us believe it was but in hindsight it should have dawned on us.

We should have questioned him more when he said John shouldn't return to work for a week. However, I didn't because at first explanation he said that he could return to work in 2-3 days. It was only after John said what he does for a living and asked about climbing ladders that he said a week. This cleverly disguised the fact this was not the procedure we originally went searching for.

The second clue should have been when he described the particular mesh plug that he was going to use. In nothing did I read about the "shuttle cock" description it was always a spool type mesh. The difference being the "shuttle cock" gets sutured to the muscle, the spool has no sutures. Why this didn't pop up as a striking red flag at the time, I may never know.

Anyway, I guess you can't change what is done but the final blow that indeed we did not have the right procedure was when the doctor told him he was not to drive until after he came in for his follow-up in a week. Now this raises a curious question... why would he be able to return to work in 2-3 days if he can't drive for a week. I'd love to give the doctor the benefit of the doubt that because they found out when they got in there that it was larger than they originally believed and had been there longer than was believed that he was erring on the side of extra caution in telling us he can't drive for a week. However, I think we have been misled by enough doctors over the past few years that I don't know that I can believe that in any way, shape, or form. He'd have to do some darn good explanations to convince me this is what happened.

Anyway, even though it ended up not being what we originally intended, the recovery time is acceptable and the recurrence rate is in an acceptable range. While it's going to be a few days longer than we wanted and he's going to have a few more rough days than we wished, it will be a success in the end and a lot better than what the doctor locally had told us about the laproscopy procedure he does. Of course, I shouldn't be surprised considering he didn't pick up on the fact that it was indeed the hernia causing the swelling not swollen glands.

That, folks, is a rant for another day! Oh how I love doctors!!! *cough*

Good News from Mayo Clinic

Well, we arrived safely at Mayo and saw the Neurologist. I LOVE HIM!!! He was very upfront with us, answered every question we had, and has a lot of the same philosophy as John and I. I think all the turmoil with the previous ones was so that we could finally find someone we are completely comfortable with.

Ok, ok... so what did they say? Well, there was definitely change in the June MRI and there is a good possibility of it in the October MRI. However, we are still in the 6 - 18 month window that changes occur post radiation and any changes are not significant at this time. So, we will have another MRI in Springfield at the 8 week mark and we will continue working with the doctors at Mayo to determine the best path of treatment. Should any of the future MRIs show change, I will most likely be starting Temodar but he doesn't feel it is to my benefit to start it at this time.

For those that have no idea what I'm talking about, they do not believe it is anything to be concerned about at this time and therefore we will continue to watch it. This is good news!!!

Love ya all and huggles from Minnesota!

-- Amy (Now it's off to find some food)

Ready to Fly The Coup

There's so much craziness going on right now, I'm not even sure at what point to start. I really should have been doing this over the past several days but needless to say my brain has been shot to the point I don't even know which side is up, let alone putting it into words. Needless to say things have been a bit stressful.

I guess I'll start with things not directly related but indirectly. Last week I was taking the last of my "unpaid" days that I need to take for the year (we have to take five days of unpaid shutdown before the end of the year.) The outline of the week was like this:

• My Dad fell off a cherry picker and bruised himself up pretty good. (He's ok)
• My Grandma was admitted to the hospital because of an infection that had her neck and face swollen and red.
• I spent two days with John in Iowa while he attended training for work.
• A tornado damaged the town I used to live in. (No one was seriously hurt or killed but they lost several buildings)
• John was called into jury duty for this week.

Needless to say, it wasn't much of an enjoyable time off.

Now on the other side of things you have the issues that are ready to push me over the edge.

• Top of the list is that it is that I am still having issues with my neurologist's office. I now have the written proof of what the radiologist told the doctor at the clinic the day of my last MRI. It states just what John and I said. "Follow-up with the doctor in next few weeks and repeat MRI recommended in 1-2 months." Granted those words were not on the actual MRI report he wrote up later. I wouldn't expect them to be. These doctors are all part of the same clinic, using the same electronic patient files, etc. So there is no reason what-so-ever that they didn't see what the clinic doctor had told me. Yet they still don't seem to think that I need to have this MRI right now. Furthermore, I guess my neurologist has been in contact with my radiation oncologist to keep him updated... with the wrong information... and therefore I was unable to get an unbiased opinion about it from him either. I seriously to the point of believing that doctors are not in it for the patients in any way, shape, or form. I don't think I will be pushing matters with him any further but rather will probably be looking for someone new that has an office that actually listens to the patient instead of making assumptions.
• Then you have my famous "lie through your teeth" doctor. This would be my first neurosurgeon. This guy is almost like "that darn cat"... he just keeps coming back into my life to reap more havoc. Of course, this is the guy that told me I had a small, inoperable, benign tumor and put in my records that he would use the results of the biopsy to convince the patient that surgery is the best option.... yeah that guy. Well, I was diagnosed in August of 2007. I saw/talked to him the one and only time two days later. However, he was still my doctor in October when my second MRI was ordered. It was after this second MRI that I contacted my second and third opinion doctors. To this day, I have not been contacted by my first neurosurgeon with the results of that MRI. Both the other two doctors agreed it was most likely a benign tumor that was showing no change. So the saga continues until June when I had surgery and it was determined to be malignant. In between there, John and I were approached by a company selling cancer insurance. I explained to the guy point blank that I had a benign tumor and asked if this would be covered should it be found to be malignant in the future. I was told that as long as none of my doctors had ever diagnosed it as anything other than benign, then it would be covered. Well, I've been dealing with the claim on this since November of last year. This time they asked for the detailed billing and diagnostic of my past MRIs. This was no trouble to obtain but when I did get them, being the advocate that I am, I looked up the codes for the diagnostics. Amazingly enough, all of the codes equaled "unknown tumor of benign type" with the exception of the October 2007 MRI. What was it's code? "unknown tumor of malignant type." I admit, I haven't been able to gain my cool enough to call his office yet and ask him why it was diagnosed as this. However, there's other issues in this matter. If it's a clerical mistake, not a problem. Fix it so that I can get reimbursed on my claim. If it isn't a clerical mistake and he did feel the diagnosis was correct, then why did he not call me? As far as he knows, I have never seen another doctor on this and I'm sitting around waiting for him to contact me for my next MRI. That should have been in December of 2007!!! Therefore, if he did indeed feel that way, I have a feeling that I will be filing a malpractice suit. You don't label a tumor cancer, that you originally said was benign, then turn around and not even bother to inform the patient of it.
  
• Then you have the newest issue that arose today. After going to the psychiatrist to get my next refill of adderrall for my post radiation focus issues, I was informed that my insurance company was denying my visits to him because they said he was out of network. I went out to their website and their provider directory and right there in front of me was his name. I call the number on the card to find out what is going on. This is then when I am informed for the first time that my main insurance company and their "behavioral health" division do not use the same providers. While he appears in the medical side of it, he is not a provider in the behavioral side of it. Wow, nice of you to make that clear somewhere. On top of that, I was informed that I had nearly met my out of pocket deductible for non-network providers and so they would start covering it soon. When I looked at my profile, there is nothing that shows I've nearly met my out of pocket expenses. Oh, guess what else no one told me?!?! The behavioral side has a separate set of non network out of pocket than the medical side does. Guess I should have just known that when no where in my insurance plan does it tell me that. Anyway, my next question was then, why does it even show psychiatrist in the medical plan then? Well, sometimes a psychiatrist is seen for a medical diagnosis instead of a behavioral one. Ok, I see him for focus issues caused from brain surgery and radiation. Does that sound behavioral to you? Anyway, if all goes well, I will go back to my doctor and they will submit it as medical rather than behavioral and it will be covered. If not, I may have yet another fight on my hands or be a lot poorer!!

Anyway, needless to say I'm ready to just fly the coup. I am tired of dealing with insurance companies that care about no one but themselves. I am tired of dealing with doctors that don't have time for you. I am tired of having to fight two battles at once: One with the people that are supposed to be there to help me and one for my life!

(Don't worry, I'm fine, just extremely ticked off!!!)

The Month in Review... July

Wow, it is still July and I'm getting this post out!!! July literally flew by!

• I'm 13 months past the partial resection of my Grade Three Brain Tumor
• It has been 9 months since I completed external beam radiation
• It has been 7 weeks since I had my first complex partial seizure and 6 weeks 4 days since my last simple partial seizure.
• It has been 2 years since I was hit in the face with a baseball starting this journey and nearly 2 years since the tumor was discovered.

Medically - I am still getting headaches but they are more on the "constant but bearable" stage than the unbearable I was having. When I remember to add them in, two Tylenol every 5 hours seems to keep them at bay. (Sometimes waking up at night, sometimes not.) I have only had to reach for the ibuprophen in high quantities twice in the past week and that was after majorly overdoing it with the hat. I have decided I need to just quit with things on my head because truthfully, the bald spot isn't that visible any more.

The saga with the doctor's office continues... Remember when I said:

"He wants me to call next week to schedule an appointment with him to discuss the scan in more detail and schedule the next MRI."

Note that both John and I heard the doctor make the above statement. I call the doctor's office Monday morning to make this appointment. The reception area had to send the request to the nurse. First off she was snippy with me about why I was calling AGAIN. I told her that the doctor at the clinic had said that the doctor wanted me to make an appointment to discuss the MRI and future options. She replied (again very snotty) "well didn't the doctor at the clinic discuss the results with you?" I calmly replied "yes, but she said the doctor wanted to speak with me." Her response was again not professional, "Well everything is stable so let's schedule you for September 8th and it's a work-in so make sure and be there." (Note that September 8th is almost exactly 2 months after my last MRI and the radiologist had said 1-2 months.) Getting quite ticked off myself, I didn't push the subject since I knew it was no use fighting a stubborn !BEEP! and that I would be better off taking it up with the doctor when I finally get to see him. However, since it takes "two weeks to get an MRI scheduled", I will be calling her at the six week mark to get my MRI scheduled. If she doesn't have it set by the time I see the doctor, there's one more strike against her.

So I've decided that the nurse is a HUGE problem and her and I are going to have to have some rounds before she gets it into her head that I [s]probably[/s] most definitely know A LOT more about my condition than she does and therefore she needs to stop acting like she knows what is best for me and what to "waste the doctor's time" with. If I get any issues with getting the MRI scheduled, I will be going to the administrator of the clinic and filing a formal complaint. Furthermore, if the MRI is delayed and it shows any sign of problems that might have been prevented/caught earlier had I been allowed to speak with the doctor and get my MRI sooner... I will be pressing far beyond a complaint and if all goes well, she won't be a nurse for long. I'm not usually this way but she is playing God with someone's life, not a puppet and that someone just happens to be me!!! Besides, last I knew a nurse did not have a medical degree nor the right to make decisions about a patient's health. Therefore she should also not be deciding what to pass on to the doctor and what to conveniently leave out. UGH. I need to get off this subject my blood pressure is rising!

Emotionally - Well, it hasn't been a good few weeks in the emotional department either. I'm very short tempered right now because of the headaches, lack of sleep, and total frustration at the nurse. The other day I came up with a thought that puts it all very well into perspective. I feel like I'm a prized fighter in the match of my life (more of a fight for my life) and those that are supposed to be standing in my corner and giving me a boost and support (medical community), are instead taking sucker punches at me trying to make me lose. I've come to realize now why so many people do not take their health into their own hands and be their own advocate. When you are met from constant and total resistance, it's hard to find the fight. It would be much easier to sit back and let the doctor manage my life. Heck, maybe I should have long ago started chemo and then we wouldn't be in this place right now (I'd probably be in worse shape but I'd be getting my MRIs!)!!! Oh to be able to take the easy way and just follow whatever the doctor says without researching alternatives and getting the facts. That would be the easy way and I've never taken the easy road.

Mentally - I can't deny that the loss of my license is taking it's toll on me mentally. I hate being reliant on others and having to coordinate an already crazy schedule just a bit more. I spend as much energy on this as I do most other things in my life. My son and I had plans this summer during my company shutdowns. Now it is "just another week stuck at home". It feels a lot like last summer did when I also could not drive. I just hope this isn't a pattern and that things go smoothly next summer. (Of course, hopefully the economy has improved and we don't have the shutdowns next summer.)

I've buried myself a lot into facebook because it's something I can do that is mindless and can get me away from everything. That's not a good thing but it works. I don't even really get pleasure in my Harry Potter sites right now or even games for that matter. I'm sure it's just a low part of the roller coaster and I'll get back ahead of it, but right now this whole thing sucks and it's making me someone I'm not.

Physically - Well, my physical side can be summed with one word... headache. Honestly, things have been better this week than they were the previous week and I've managed to get motivated to work on the house some and my energy is a little better. Not a lot but a little. Now if I can just add more than 6 hours of sleep a night into the equation, I might actually feel pretty good again!

Well, I'm officially down a pant size! One day over lunch my mom and I went shopping and I got a couple of pairs of pants that fit me pretty good. They are a size smaller than what I've worn since I had my son and honestly, I'm probably not far from being able to go one size smaller yet. Unfortunately, I do have two problem areas that are not my tummy and therefore I struggle with the next size down because I never get it far enough up to be at the tummy. I don't want to be uncomfortable so we'll stick with this size for a while!

If all goes well, I may be getting my first haircut since I had surgery. I'm hoping we can figure something out to make my hair lay better than it does right now. I'm struggling with the very thing I hate about natural curl... it always looks unkempt to me no matter what I do to it. Maybe we can change my mind's eye on this a bit. LOL

Work/Family/Play - Well my son got a blue ribbon in foods and a blue ribbon in his consumer project at the 4H show. He will be showing in woodworking and electricity on August 3rd. He has been working with his dad to finish up these projects in a timely manner. It's nothing like waiting until the last minute!

Today my son left to go to Chicago for a trip with 4H. I think he will have a blast. It's only an overnight trip but it's good for him to get away since other plans became shot when I had my seizure. This is two summers in a row that plans didn't exactly go as planned thanks to my health. However, next summer we are going to Disney come hell or high water!

We also found out that school starts for him on the 19th. This is going to cause a few minor issues because we were planning on all being out of town during this time. I guess we will have to find someone for him to stay with so he can stay home and not miss any school. I think they start earlier and earlier every year. It's just not right to start school before the State Fair is over!

All jurors were dismissed for John's first week of jury duty. Now he has to wait until August to find out if he'll have to serve on that round.

Well, I think that's about it for now. Hoping I get more sleep tonight than the three hours I had last night. Hoping this is finding everyone well. *huggles*

The Month In Review... June

Ok... so it is July. I think I spoiled you all in June with all the updates. Be prepared because you may have more of that in July!!!

• I am a year and just shy of one month from the partial resection of my GRADE THREE BRAIN CANCER. (I'll explain the capitals here in a bit.)
• It has been 9 months since I completed radiation.
• It has been 1 month since my first complex partial seizure.
• It's been almost 2 years since I was hit with the fate driven baseball that started the journey!

Medically - Where to start, where to start. Benign topics first I guess. I still have to go for follow-ups with my eye "issue" but he doesn't believe it's anything to be too worried about, he just wants to watch it. *rolls eyes* (Read between the lines, he gets paid $350 from the insurance company every time I walk in the door so he wants to keep the money coming in.)

I did finally get my partial for my teeth. It feels good to have teeth again and within about two days after wearing them, my mouth pain went away. Imagine that...

Now to open the can of worms... As you all know, I had my first seizure last month. Thanks to Keppra, I have not had a seizure since the 11th so that is a good thing. Now I just have to wait out the 6 month grounding so I can drive again and things would almost be back to normal. My neurologist is pretty certain it is just scar tissue causing the seizures but I myself am beginning to have my doubts. About two days before the first seizure, I had some horrible headaches. I didn't think too much about it then because my neck was bothering me, my mouth was killing me, and it was starting to get hot out and the heat always gives me minor headaches. I figured the three things together is what made them so bad. Well, the headaches continued beyond those two days and well past when I stopped having seizures. I asked the neurologist about them and he said it was probably the scar tissue causing them as well. Long story short, I've now been dealing with the headaches for a solid month and they seem to be getting worse rather than better. Knowing severe headaches can be a sign of pressure in the brain or tumor regrowth, I contacted his office about them thinking maybe we should get another MRI to make sure there is nothing going on up there. If it is regrowth we need to start treatment yesterday so we really shouldn't wait another month to have the MRI.

Well, his nurse spoke with him (without even having talked to me first just going by what the receptionist took down) and he said the insurance company would not approve an MRI less than 6 months apart. For one I know this is not true because I had an MRI every other month leading up to surgery and secondly most Grade Three Brain Cancers have MRIs every three months for the rest of their lives. She stuck by her guns saying that it would be a waste of money and that he said it was not necessary. Instead they are putting me on something for the headaches and will wait until August for the MRI. Guess what I'm going to do today? Call the insurance company and see if a cancerous brain tumor is allowed an MRI only every six months or not. Anyone know a good neurologist in central IL?

Had she not ticked me off by being so adament that the doctor was more knowledgeable than me on the subject I would have probably remembered to tell her the other issues I've been having. Let's see, signs of a brain tumor: headaches, dizziness, seizures, nausea, feeling not like oneself, etc. Well, I've have all of those signs in the past month. I can't believe all five of these signs would suddenly show themselves, when I have never even had a sign from the tumor in my entire life, if there wasn't something more going on up there. I was sure to call John and tell him what was said. I want as many "witnesses" as possible for when I have my MRI in August and it shows regrowth!!!

Emotionally - *Deep Breath* Well, as you can see by the above section, I'm not in a very good place emotionally right now. I'm in pain, I'm aggravated, I feel like I'm being hung out to dry by the fourth doctor since this journey began, I'm in pain, I'm annoyed that no one is really listening to what I'm trying to say, I'm in pain, I'm frustrated that I've now had to fire every doctor that I've dealt with on this issue but one because of their attitude or lack of listening power, did I mention that I'm in pain? Obviously, my neurologist wasn't at the hospital when I had surgery. He doesn't know my pain tolerance. Not many are able to leave the hospital on nothing but tylenol when they've just had brain surgery. Well, that same person is taking between 8 and 12 ibuprophen a day to keep the pain to a tolerable level. Does this sound at all normal to you?

I guess the biggest issues are that not only am I relying on everyone around me to get places but my resolve to fight doctors is almost gone. I am in too much pain to care anymore and that scares me. I've always been a fighter and I've always been able to go against the odds and get what I know is needed but I've not got it in me to do anymore. So two major areas of my personality have not been beaten down and I fear my will to fight this crap in my head will be next. Unfortunately, feeling this way now is not a good thing because if my fears are right and this is regrowth, I am going to need all the strength I've fought with for the last year and then some to dive into the next chapter of this story.

Mentally - I'm getting quite a bit back into the issue I hit many months ago where the Mental and Emotional sides are pretty much one. My motivation has again taken a hit but I think a lot of it is because my mind never really feels clear because of the pain I'm experiencing right now. I have things I need to do this week while we are off on shutdown but I am lucky to get half of one thing accomplished before I want to curl up back in bed to sleep. (Yet another symptom that has arisen since right around the time I had the first seizure.)

Physically - I knew the many months of reporting an improvement in my stamina would have to eventually stop. Well, this last month has shown a major decrease in my stamina and my energy level sucks. It's almost bad enough that when I see the Psychiatrist on the 21st, I'm tempted to try going off of the Adderrall and see if there is any change at all. I feel at least as bad as I did when I started it back in December, if not worse at this point.

I have had to start wearing belts for most of my pants again. I have broken the threshold of my lowest weight since having my son. Yet one more thing that is starting to concern me a bit in hindsight. I'm not doing anything different that should be making me continue to lose weight. I haven't danced but three times all year and outside of a little yard and house work, nothing major in that respect either. I had plateaued nicely before I had surgery last year and basically felt that if I got back to that weight eventually, I would be happy. Now I'm working on well below that weight. I guess this is just something else I need to mention to all of my doctors and see if any of them truly try to figure out what is going on. I thought it was supposed to be harder to lose weight the older you got, not easier.

The hair is doing amazing and I may actually have to go in for a haircut soon so that maybe someone can do something with this disaster on my head. The "bald" area isn't really bald anymore. It has lots of very sparse, fine, light colored hair. It is quite a bit lighter than the hair around it so it still sticks out pretty bad but it is truly there!!! If it weren't for the horrid curl that has taken residence, I could do a combover right now and hide the fine area but the curl makes it impossible to do. Have I ever mentioned that I hate curl?

Work/Family/Play - Well, I am mid way through the 5th week of shutdown we have had this year. Our plant has two more scheduled. One in August, one in September. There is actually a whole month between this one and our next one. I hope I am able to make it through them. My body has never fully gotten back into the swing of full-time employment since coming back from surgery last year and the shutdowns have been just far enough apart that just when I get to the point I can actually make it through a week without nearly losing it, we are off again. This next stint should be interesting!

It does help that we are very busy in IT at work. We have several projects going and that is good because the time we are there goes by quickly. However, it also means I wear myself out more trying to reach deadlines in the drastically reduced time frame. We'll see how it goes over the next few weeks.

John and my son are working on 4H projects this week. I think he has finished his electricity project and they will be working on the woodworking next. He has his foods and consumer show tomorrow. He has his consumer project done but he needs to get moving on making his muffins or he's going to run into supper making them.

He was able to pass the 6th grade. He didn't pull it off by much but I think that he was scared into working a bit harder next year as long as this has been a boring enough summer for him. (His poor grades has warranted a summer grounding from all video games)

John is finally slowing back down with planting season. He is putting in normal hours again and should be home Saturdays again for several weeks. He has declared he will be taking some days off to get things done around here but we'll see. He is also going to have to take some time off for jury duty at the end of July and August. He has the darndest luck with that. I think in the 12 years we have been married he has had 6 summons for jury duty. He served the first and the fourth but got out of the other three because he had just served. One was for the federal jury so we were both thankful he didn't get caught with that one. At the time he received it, there was no way we could have survived if he had to miss a week or more without pay.

John and I were able to dance twice the week of Relay. It was great! I miss dance so much but the way I feel right now, I'm not sure I could dance if I wanted to. There won't be any more dances until the 18th so maybe I'll get something sorted out between now and then. *sigh*

Relay - Relay was a huge success even if we did have to move it inside. I haven't finished figuring up the remainder of our money but I will need to do that by the end of the week. Our team was a silver team based on the amount of money we raised and we were the second team in fundraising for the event. I will be sure to report the final total after it is all totaled. Thank you all again for your support!!!

Well, I guess I better make some phone calls now. I need to call the hospital in Chicago to get some paperwork filled out and my insurance company to see if my neurologist is just trying to pull a fast one or if I indeed can not get another MRI with a cancerous tumor until August.

Huggles.

The Month in Review 12-28-2008

It's been a while since I updated and I plan on only making monthly updates from now on unless something major happens. So...

* It has been 6 months and almost 3 weeks since the resection of my brain tumor.
* It has been 2 months and 4 weeks since the completion of radiation.

Medically - Well, my appointment with my NS went as I expected... actually worse. John and I drove the 3.5 hours to Chicago only to find out he did not have my MRI or the report. (My GP sent it to him so who knows what happened with it.) Basically we were told it was a wasted trip and that he really wasn't interested in the report anyway just the MRI. (I meant to bring it and realized I forgot it when we got 30 mins out. If I had known they didn't have the stuff I would have turned around to get it.) It was mostly just a wasted trip up there. Now I have sent the information he wants to him and will be awaiting his call. Why he couldn't do this in the first place I have no idea. It would have saved us a trip.

I will get into more on this later but I have been started on the ADD/HD drug Adderral. This is helping my focus and energy A LOT.

With the FUBAR at the NS office, I have decided to talk with my Neurologist and see if he will take over my care full time now. I will be seeing him January 13th. Hopefully he will take me back on and I won't have to drive to Chicago anymore. Needless to say I wasn't too happy with the trip or his office for their lack of brains organization. Since dealing with major medical issues, I don't take much crap or lack of organization from ANYONE especially surgeons.

Emotionally - Since seeing a doctor about my "depression" and going on some meds I have been doing much better here. Something he said makes A LOT of sense. He said he believes it all stems from my focus/concentration issues. These issues cause me to work harder, thus making my energy level go down, thus causing me to be depressed about not being able to do anything, which causes the mood/temper. Since going on meds for it, things have been great. My energy level is probably twice what it was and very, very close to what it was before surgery. I can actually focus on things like bills, paperwork, etc without wandering constantly. My moods have been 100% better and I feel better now than I have in six months. There has also been another improvement in an area John is really happy about. (He actually turned me down the other night.) I hope this trend keeps up because it is making me feel great.

Mentally - This was very nicely summed up above. Basically, I'm not quite where I was with concentration but memory and focus have improved. I honestly think that some areas of my focus/concentration will never return. I no longer wish to do my income taxes by hand "just for the fun of it". LOL

Physically - I feel very good Physically. My energy has improved A lot and I can find myself being able to do the housework again and get into a minor exercise routine. I got a WiiFit for Christmas and I've been playing around on that. My strength is definitely not there. I can't even do a "Granny Push-up" let alone the 50 regular push-ups I used to be able to do. This will come back I am sure. It will just take some work to get my weak muscles back.

I have begun losing the 45 pounds I gained from the steroids. I've managed 18 already and still working. (I'm likely to have a beef with my GP about this before it is over. I realize that I am above my last weigh-in and I'm sorry I didn't visit at my highest weight... get over it.)

The hair is also coming in nicely. The entire left side is coming in nice and full and there is patches on the right side coming in. If it keeps up at this rate, I can hopefully expect a full head of hair again some day. And if not, I continue with my new trend. :)

Work/Play/Family - We had a very nice Christmas. I think everyone got most of what they really wanted and we enjoyed time together as a family. While on the holiday vacation we have gotten a lot of things accomplished around the house and had some fun playing games, chatting, and hopefully cooking before the holiday is over.

We will hopefully be going to the big New Years dance for New Year's Eve. I can't wait to go and will have to be sure and conserve my energy that day so we can dance the night away.

Well, I'm not sure there is much else to update. I hope everyone had a Merry Christmas and May you all have a Safe and Happy New Year.

Huggles

The News Made My Day

I had a wonderful conversation with my NeuroSurgeon on Wednesday. I was able to take care of all the lingering questions that were still fighting in the back of my mind, get the details that I so longed for (yes I'm weird like that), and finally be able to step up knowing I've done what I can to be prepared.

So what did I learn? Well, I learned what will happen the day of surgery in detail. I won't share this information right now but I will after surgery is all over. He did a good job of walking me through from the pre-surgery MRI to what I have to do to be released (more appropriately who I have to get approval from) and finally to what recovery will probably be like. I learned about the pain medications I will be given, what things will occur in order to get the equipment I so dread off of me, and who I will be meeting as we move along. So it was a very good conversation and it was able to finally put that last shred of doubt from my mind.

Ok, I know you are asking yourself, "Surely this isn't the news that made her day. It would probably just terrify me more." And you would be right. So what is the news that made my day... Anyone that knows me can probably take a wild guess at what it is... Go ahead... do that now... Anyone??? I'll give you a hint... I'm doing this very thing the week before surgery?!?!? Ok, fine, he told me that I can ride roller coasters after I am feeling good again. :D That is such wonderful news because I really questioned whether he'd give me the go ahead. I figured it would be a bit risky but he pretty much said if I am feeling up to it and I'm crazy enough to get one... Go for it!!! That was such wonderful words to hear. I keep telling John that I'll start out tame... I'll go for the Ninja at Six Flags instead of anything else crazy like the Raptor at Cedar Point. LOL

Anyway, just wanted to share.

Oh, and did I mention that I just love my NS? He's fabulous and I am positive that I've made the right choice.

The Big Snip is Over

Well, John's Vasectomy is officially over and I'm am ticked off. First off, I'll say that I'm more upset about this than he is. Why? I hate to see others in pain. I'll take all the pain in the world but I hate to see those around me even in minor pain. Thus why I am ticked off about the revelation I will tell you about.

John's vasectomy was supposed to be done with the "no-scalpel" technique. From what I've read about this technique, it is one "incision" instead of two, there are no stitches, and recovery time is quicker. This is the technique that we had agreed on because of the nature of what he does and the fact I didn't want to see him in a ton of pain. Well, once it got started and before I could say anything, we found out that it was the old-fashioned method instead. Before it was over, I was close to tears. I really would have gone back to my former method of birth control (IUD) had I known it would be traditional. I realize that many guys before him has gone through traditional and are just fine but I hate it. So now I am sitting here, quietly fuming and trying to hold my anxiety to a minimum. He is just fine with it. Yes he realizes he will be sorer but he is ok with it. Why am I the one that gets so upset and annoyed with something like this? It's not my body. *sigh* Sometimes I'm just to damn compassionate for my own good.

Well, I'm not sure I'm ready to describe the procedure yet so it will give me something to write about next week. I will try to do my week in review tomorrow but after that I probably won't be back until after Christmas. We'll see how it works. I have a ton to do and now I won't have John even helping me a little bit so...

Oh and I still don't have my MRI results...

When it Rains, It Pours

Ok, just a quick summary of my last few days to try to talk down the spinning of my head. :)

Monday we were iced in and I worked from home for the day. I was so glad to have a nice quiet day working from home.

Tuesday school was called for my son and when my husband went to work we found out why. The entire town was out of power. Needless to say, he was sent home shortly and the boys spent the day at home. On my way home, I noticed that my car was doing strange things such as locking itself repeatedly. John thought maybe something was loose or wet and we didn't think anything of it. Then for a few hours that night, we had to deal with the car alarm going off multiple times for no reason. Well, it appears its problems include: locking itself repeatedly, alarm going off, and dome light not going off. We are to take it in Monday to be looked at.

Also Tuesday, I figured I better call and check the status on my MRI since I had not yet received a time for it. I found out they had not yet scheduled it. ARGH. Anyway, they have it scheduled for next Tuesday so it's not delayed too much. Well, today I was out in that area of town so I figured I'd go ahead and stop and get my bloodwork done. (You have to have bloodwork checked prior to having an MRI. I think I explained that in a previous post.) Apparently the doctor hadn't called in for my bloodwork so I had to wait almost an hour for it to all be sent through. To top it off, the managed to attempt to amputate my arm with this particular one because for two hours afterwards I had no strength in it!!! It's doing better now though and has FINALLY quit bleeding. We shouldn't have to be the ones to tell doctors what we need!!!

Best of all, after about 2 months of relative quiet at work, everyone is having problems this week. We have a new employee that I'm trying to get his laptop set up, we have a printer that has gone out, and I have received somewhere in the vicinity of 40 calls to handle "brushfires" in the past three days. When it rains, it pours, and I guess it this case we get ice as well. :)

Having Confidence in your Doctor

It didn't take me long after talking with my third opinion doctor to decide he was the one that was going to make a difference in my course of treatment. I realized after we had only spoken for a short time, that I adored him, trusted him, and was ready to put my future in his hands. As the weeks since speaking with him has gone by, the more certain I feel he is the right choice.

Last week I called his office to ask them for an order for my EEG and MRI for December. I left a message and also told them I had some questions and would like them to call me on them. The next day I received a call from the head clinician and he left me his direct number. I called him back and told him what I needed from his office and that I had some questions typed out for the doctor. He gave me his email address so I could send them to him directly. He told me that the doctor would be out of the country until Wednesday but that'd he'd get back to me.

Well, last night I had a message on my voice mail. It wasn't from a nurse. It wasn't from an intern. It was from my doctor himself. I was nearly floored because I have only talked to a doctor on the phone once in my 28 years of life. Usually you get the nurse!!! Anyway, he gave me his direct number and asked me to call him back to discuss my questions.

I called him back this afternoon and he had told the receptionist that if I called, have him paged. Again it floored me to have a doctor care this much. I wish I could say that the conversation continued on that note but he confirmed so many of my suspicions, I am still not sure what road to take. However, that's not for this entry. In what I was hoping was going to help clear things up, I am now more confused than ever. The fact I do trust this doctor makes it even harder.

Things are on Their Way

Several days ago, I called my new neurosurgeon to ask him to send the order for my EEG and the next MRI, to my Family Physician so that we can push the two tests through my insurance. I also have a 3 page word document of questions for him on various things from some tests I stumbled across to the open biopsy itself.

Well, for most of the past two days, we've played phone tag. This will no longer be a problem. Yesterday afternoon the Clinical Tech left a message on my voice mail at home and the number was his direct number. So now, I can call him directly instead of going into a queue. This will make correspondence much easier. He said he would get the written order for the two tests and forward it on to my physician. I am guessing it will take a week for the insurance to ok it once they get it so with any luck I'll have the EEG by Thanksgiving. It will be nice to get the EEG out of the way and find out what my chances are of having seizures any time soon.

I told the tech that I had a list of questions that I'd like to know the best way of giving them to the doctor is. He was quick to say I could email it and gave me his email address. I prefer this method anyway because then I don't forget to ask anything and answers can be thought out and replies can be less hurried. Anyway, I sent them to him this morning before I went to lunch. He told me that my doctor will be out of the country until Wednesday but that he would expect some answers by the end of next week.

I'm very excited about this. I'm still in the stage of decision that the more information I have, the better able I'm be to choose the correct path. After some things I discovered yesterday, I'm at a deadlock on what to do. I really have no idea which way to go with this thing. However, after I get his reply, my decision should be a bit more clear. Especially after he answers my questions about the PET and MRS scans and whether they could assist enough to choose a burr hole biopsy instead of open.

You have to love being caught in the middle of your own mind. I guess the good part about that is that no matter which path you choose... you win.

I will likely take the weekend off unless I get a wild writing hair. I'm sure I'll have some new stuff for next week.

Care Team and Square Dancing

Ok, so that probably doesn't make a lot of sense and no they are not related. LOL

Today I spoke with my family physician and updated him on what is going on and what my current thoughts and plans are. He felt I was doing all of the right things. I also asked him to be the liaison between my local and remote team. Since I am considering treatment at a facility that is 3.5 hours away, it isn't feasible for me to have all of my MRIs, scans, etc up there. Because of this I need a few members of my team here locally. He agreed to be my liaison down here so now my team is mostly in control. He also agreed that the neurologist I picked out for down here would be fabulous. Therefore, it looks like I'm set to go with whatever road this tumor takes me. Now all I have to do is let my local neurosurgeon know that I have found another doctor to take over my care. I don't handle confrontations of this type well so it will be a character building moment. (Yes this is a huge character flaw of mine and my husband will be the first to acknowledge it!!!)

Second thing on the agenda, after a few hour nap, is square dancing this evening. It's been a few weeks since we went dancing so it should be fun to get back into the swing of things. (no pun intended) I really love square dancing and we need to start doing it more often if I am to meet my goal of shedding a few pounds. I figure that I no longer have the excuse that I don't want to lose a ton of weight only to gain it all back with pregnancy. Besides, now I have an incentive since the less weight I have, the easier my recovery will be when I choose to do the open biopsy.

Speaking of open biopsy. Yes, I have decided I will do it but the big question mark is when. Unless something shows up in an MRI, the soonest it will be is next June. Even then, I reserve the right until the day of surgery to change my mind so... don't count on it!!!

Alright, that's it for now. I have been quietly working on some legal documents that are of concern for the future but I will fill you all in on that as I finish each document. I'm hoping maybe my entries on it will convince some of you to work on your own important paperwork.

Surprise!!! Three doctors, three opinions!!!!

Some of you have already seen this but thought I'd post it in my blog so I forever have a record of it.

Ok, we are on our way out of Chicago heading back home. Dr. C (name withheld to protect the innocent) was fabulous and he has yet another idea on what he would do.

As for tumor size, he said there is no real way of telling without going in. I like his honesty on this. His recommendation is to take my time and watch it while I contemplate what I want to do. He assured me there is no definitive answer right now and that only I can make the decision on what to do and when. His recommendation is that, when I am ready, I have an open biopsy as opposed to the burr hole biopsy. He said the difference is that they would make about a four inch incision, remove part of the skull, and then remove a large portion of the tumor and/or frontal lobe that would then be sent to pathology. This would give us a firm idea of what we are dealing with. He assured me that the only complications beyond that of normal surgical risks are of seizure which is something I can have at any time regardless of whether I choose to do anything or not. He said that even though the open biopsy sounds aggressive, the chance of causing me any personality harm in the process is minimal compared to what might occur with a resection because it will be strictly on one side of the brain.

The other thing he recommended is an EEG and I will be seeing if one can be done locally or if we will have to return to Chicago for that. A minor test, no big deal.

At this time, I will continue to watch it for any signs of change. Now is not the time to attempt to undergo any type of surgery with my history of sinus/bronchitis issues so nothing will be done for a minimum of six months. In the meantime, I will continue to prepare and educate myself and we will take the next step when that time comes.

There's your latest update. Nothing like having a problem that no one can really agree on. I always knew I couldn't ever have an easy problem. :)

Amy

Conservative, Aggressive, The Honest Truth

Ok, so my first opinion when this thing was originally diagnosed can now be called the "conservative" diagnosis. He believed that my tumor was relatively small, benign, and inoperable. His opinion was to have a needle biopsy done and then watch it for any change with frequent MRIs. This was obviously what I "wanted" to hear at the time but was it truly what s going on?

My second opinion can now be called the "aggressive" diagnosis. He believed that my tumor was very large, probably benign, and operable. His opinion was that we go in and remove this thing and he was pretty certain he could get it all. The total opposite of our first opinion and the wake up call that this thing may be more of a beast than we thought.

Now my third opinion is what I am considering the "honest truth." He believes that it is not possible to tell how large my tumor is or even if it is a tumor at this stage. He also believes that surgery at this stage is NOT my best option. His opinion is that we perform an open biopsy so that we know exactly what is going on in there and determine what, if anything, should be done from there. He believes that if it is indeed a Grade One Glioma, it should be left to its own devices because essentially it is "a birthmark of the brain". He also believes that under the circumstances, this is not necessarily something that has to be taken care of right at this moment. He acknowledged the risks either way and was the first to clearly state that there is no 100% correct choice because that can not be known until it is all said and done. Talk about being honest.

Wow, nothing like going full circle. I realize now, that regardless of what I choose in the end, there was a reason I put the stop to doing the biopsy early on. I had other opinions to see and digest before we took any action. Amazingly enough, I was very against considering the needle biopsy after I made up my mind about what was going on. Now, I am seriously considering a procedure much riskier as a very valid option probably in the next few years. The good news is that it is no riskier than any other surgery you might have and the only serious risk outside of that is the possibility of seizures. That's not a positive outcome but when you think that I could have seizures at any time anyway... maybe it's a worthwhile risk.

So, no decisions have been made in the official at this point but I do have a new doctor that I am very confident in. I frequently commented that my second opinion was with a doctor that I had a great deal of confidence in. I was quoted as saying "The third opinion doctor would have to sweep me off my feet to convince me otherwise". Well, this doctor has done just that. His "bedside" manner is wonderful, his way of explaining things is top notch, and I appreciated his upfront honesty. However, the most important thing he gave me is confirmation that I don't have to make any type of decision here and now. I have time to live, love, and contemplate all of my options.

I will possibly have some more entries about this later but for now, I'm going to do those first two things on my list. :-)

Third Opinion On it's Way

I just contacted the doctor whom I am seeking for my third opinion and the appointment will be on this Friday, October 26th. I have heard nothing but good things about this guy so I look forward to hearing what he has to say. (Who am I kidding, I'm terrified about what he is going to say but I do look forward to bamboozling one more doc when it comes to my neurological performance.)

I've got a ton to do between today and Friday so I probably won't be out here much.

Still Trying to Sink In

Well, I haven't gone over the voice recording from this appointment nor have I truly let it all settle in my head yet but here's the information I have from my appointment today.

I am not a candidate for Gamma Knife according to the neurosurgeon we spoke with today. We ended up with more food for thought than anything. (Literally...) Anyway, he doesn't believe that the "swelling" that my local neurosurgeon is seeing is actually swelling. He believes it is tumor. He believes it is still a low grade glioma but rather than being 3 cm by 2 cm, he believes it is closer to the size of half an orange or about 6 cm in size. (Cut an orange in half and you are holding my tumor) This is a significant change from what my local neurosurgeon believes.

I will be seeking a third opinion with the hopes that the third doctor agrees with one of them. Only then will I truly be able to sit and reflect on what is going on. Unfortunately, even if I don't want to, I have to feel that this guy is probably right. Where my local neurosurgeon may have seen a few hundred, this guy has probably seen hundreds or thousands more. Not easy to accept in the slightest.

Unlike my local NS, he believes surgery is the best option even with the risks. He feels with 85% certainty he could remove the entire tumor. There would be risks because there is the "motor strip" which is in the form of an artery that controls my left leg. However, he believes that with an interoperative MRI, it can be removed safely.

My current path has not changed. I will not be going into surgery any time in the near future. I stand by my decision that as long as I am not experiencing problems from this tumor, I will not be doing anything with it. However, it is time to pump up the speed in which I am preparing, just in case it does come to problems. Obviously, my mood on this will probably change 100 times but if there are symptoms that develop... I will reluctantly consider surgery.

I appreciate everyone's continued thoughts and prayers and I will continue to keep you all updated. I will probably give a better blog entry when this all settles a bit in my own mind.

Love ya all.

I am Making a List

... and checking it twice but it's not to find out who's naughty and nice. :) Ok, so I'm in a bit better mood today than I was yesterday. This is surprising since I have such a sinus headache I've barely been able to see straight all day. For as long as I can remember I have suffered from Sinus infections and usually I just shrug them off an eventually get medication if I can't defeat it. However, my trigeminal is keeping me on my toes with this one. You see, it goes through phases where some times it is numb on the right side and other times it is heightened sensitivity. Therefore, there are times that the sinus pressure causes such a headache I can barely see and other times I can't even feel my nose let alone my sinus. Oh well, it's keeping me honest at least.

Ok, back on target. I've been working most of the day to make sure I have all the paperwork I can think of to take with me to Chicago on Friday. I've got copies of my medical records, a sheet that has all of my medical information summarized to give the doctor, three pages of questions to go over with him, all my medical cards that need to be given to them, my medical journal for going over anything that may be suspicious, and my calendar of dates so that I make sure and give all the right information to them. They will probably think I've decided to bring in a small filing cabinet with me but in reality it's a big help to have everything in one place and sorted out. It makes me feel like I have control over at least a little bit.

Anyway, I have a list of five general questions for him. (Similar ones that I asked my local NS but I have refined them.) I also have eleven general questions and seventeen "dependent" questions for him about Gamma Knife. Of course, none of these will matter if it is determined that I'm not a candidate, but I have them just in case. I also have a list of questions about a biopsy if it should happen that it is going to be required before they consider Gamma Knife an option.

It will be a long and tough decision if they tell me that they won't give me an answer without the biopsy. My biggest question, if they tell me it is a requirement, is what will it change? If there is no difference in what they can and will do, why bother with a test worse than the danged procedure? I realize that they want to know the exact details of my tumor. What they have to realize is that I don't give a dang what type of tumor it is. It's an object in my head that doesn't belong and may possibly some time in my life cause me problems... but it isn't right now. That's all I really care about. When the time comes that it starts giving me problems, then invasive tests may be in my list of options. For now, I really don't care what is in there as long as it stays put and doesn't try to grow. All I can see the biopsy as right now is an excuse to try to talk me into other procedures and they have to realize there IS NO SUCH THING AS OTHER PROCEDURES RIGHT NOW!!!

So you can see that I may have some battles before me even if the news is favorable on Friday. Will I decide to agree on the biopsy if it is a requirement? I can't honestly answer that right now but I will tell you that it will take a very good argument from them to convince me of it and A LOT of soul searching. I don't believe in unnecessary tests... especially ones that require more than a simple blood test. If the test doesn't clearly benefit the outcome, what is its purpose? They just have to remember that Gamma Knife is THEIR only option right now, regardless of what a biopsy shows or what they suspect it may be in change.

Ok, time to shut my mind off so I can get to sleep. Night

They've Decided I Didn't Exist...

... before the age of eight. This story will be one more in support of getting your medical records as early in your life as possible. I highly recommend it. Adults... this means now. Parents... this means get your child's now.

Anyway, so here's the story. Yesterday I had finally received my medical records. In looking at them, I discovered there are no records there for the time before I was married. No big deal. My previous doctor still has an office so I called over there and sure enough I could pick up my records today. Great!!! I knew as soon as I picked it up, something was missing. It was just way to light. So what's missing?

You see, here's the story. My first pediatrician was a wonderful doctor. I saw him through my struggles with tonsillitis, both allergic reactions (penicillin and codeine), my problem with anesthesia, the early history of shaking issues, etc. Unfortunately, he decided to retire. My records were transferred to another doctor. We were with the second doctor for two years... during which he attempted to kill me three times prompting my mom to change doctors again. All of my records were supposed to be transferred to my new doctor. He said they were. Mom believed him. So what's the problem?

Well, apparently his idea of sending my records was to write a one page summary giving my birth weight, immunization history, and a barely legible note that I had an anesthesia disorder when I had a T&A on 11/81. (Tonsil and adenoid) This was all he sent to my doctor. None of the records about my allergies. Nothing about the two neurologists I was sent to about my shaking. No history of why I had surgery and what the outcome was. NOTHING. Now I can understand sending a simple summary such as this for a child whose worst problem is an ear infection but not for a child whom probably had a thicker record than a 20 year old!!!

So anyway, all my medical history prior to my 8th birthday is now gone. (I haven't fully given up but I'm guessing it's been long destroyed even if I can find the doctor all the records were transferred to when he retired.) I don't know that there would be anything in those records that could shed some light but I can't help but feel like a part of me is missing without them. That small chunk of my life that now can only be recalled by my family and that's assuming their memories are up to it. I now may never know if my shaking disorder as a child was in any way related to my tumor. I guess there's worse things... it just really sucks right now.

So again, I plead to those of you out there... Get your records in order now. Contact your doctors while you know where your records are. If you have kids, get them a file started. It just might save a lot of headache some day.

Sometimes Better Off Not knowing...

Ok, well not really but in this case I was nice and calm and prepared for next Friday until I received my medical records from my neurosurgeon. UGH, is all I'm going to say as I sit here extremely pissed. At least from this point forward, I will be requesting the updates at the time of the visit so there won't be weeks of relying on questionable data again.

So here's the scoop. Today I FINALLY received my medical records that I requested 6 weeks ago. I quickly found out that they don't include the MRI scans that I really need but that's been sorted out. For those who may be going through the same thing as me, you have to request your MRI scans separately from the radiology department. Records will not provide the copies of your scans.

Anyway, so I review through my records to see if I can find any inaccuracies and to make sure I've located all the information that I'm particularly interested in. Well, I find a very interesting inconsistency right off the bat starting with my very first appointment with the neurosurgeon. John and I both remember him vividly stating that he would not operate on it on someone my age, based on its location. Is this what he wrote in my records? Hell no. His words, "I have recommended that she consider an image-guided biopsy to try and determine a diagnosis. It may be amenable to resection, depending on grade, if this tends to be a glioma." Does that sound anything like what he told us?

I have my theory on why he said it and it doesn't please me one bit. In my record with my GP, it was indicated that I was insistent that surgery was not an option. He saw this. He knew that if he came out saying that surgery might be an option, he would lose me for any and ALL tests. Interestingly enough, even other records from phone conversations, continue to lead to this "surgery is not an option" approach. Why do doctors see someone, who they know wants the truth with no punches pulled, and insist on giving us what we want instead of what they really think? It annoys me, because now I really question whether they will even consider Gamma Knife for me if I am indeed a candidate for surgery. Doctors, of course, would much rather operate and "remove" it then do something that in the long run is better for the patient. (Mentally as well as physically in this case.)

I also find a kick out of the "Recommendation". He states in there that he talked about the risks of surgery including bleeding, infection, and anesthesia. Funny enough the only thing we recalled about the "surgery" (which I'm assuming is the biopsy since he said surgery wasn't an option) was that there is a less than 1% chance of anything going wrong. Again, he contradicts himself because even in their notes on the phone conversation when I asked about the biopsy and symptoms, he states that there is little chance of problems from it... yet there's this chance of bleeding... infection... argh. Can you tell I'm pretty pissed off right now?

And just a side note, from this point forward I am going to be asking for the permission to use a voice recorder in all future doctor's appointments on this subject. Then that way when they try to say that's not what they said...

Venting: A Girls Sanity Gift

Ok, I'm in a venting streak today. It was on August 30th that I requested my medical records. Guess what I still don't have? Anyway, I contacted the records department today to find out the holdup. (Legally I could sue because they did not complete it in 30 days but I really don't have the energy for that endeavor.) Well, it appears that my general doctor is the holdup and hasn't yet submitted his stuff. I love my GP dearly but some days his office can truly annoy me completely. Maybe it really is time to think about changing doctors whether I really want to or not. Not only is this a strike against his office but he made some poor decisions in the past that caused a lot of unnecessary headache (This isn't even counting the mistake with the size of the brain tumor.) I don't know, I guess there may be a few doctor's who need replacing in the next few weeks.

Oh speaking of brain tumors and doctors... can you believe that his office charged me and my insurance for the appointment when he told me I had a brain tumor? For all the good the information he gave me was, I would have just as soon heard it over the phone and saved the $15 copay. That is truly annoying but too late now.

It's sad when I'm so ticked that I can't even keep a post flowing smoothly. Maybe I better wrap this thing up and try and get some hot tea or something. I really need to calm, I can see that my blood pressure is a bit up. (Yes, I can see it, my arteries/veins are standing up on the back of my hand and that only happens when it is up. They aren't throbbing yet though so it's not dangerously high.)

Hugs