9 Month Post-Treatment MRI Stable

Another 'routine' brain MRI, another stable report. The oncologist says he even looked back to the first MRI's and he sees no change. This makes me feel like these $5000 tests are a waste of time and money.  The doctor checks to see if I have strength in my limbs, that I can hold my hands steady, and looks in my eyes. If I didn't speak, the appointment would take 2 minutes. The doctor continues to insist I go through this every 3 months.

I did report that the tingling on the left side of my face has changed to tiny, unnoticeable muscle spasms. This is pretty irritating,  but no cause for any treatment. On the headache front, not much has changed. I have been too busy to look into natural medications and start yoga. I am supposed to work on things that are important but not due, shame on me. I did find a couple of Tylenol #3's in the couch, they seem to help keep the mild headaches from getting worse.

Happy Holidays,
Ed

Done with Tramadol, back where I started

After almost a year taking Tramadol for my headaches, I have quit it.
When I first stumbled on this pain killer (post), it was a godsend. After a couple months it stopped being effective, so my doctor said take more. After taking more became ineffective, my doctor said take more.
About two months ago I realized that my headaches were a lot worse at this high dose than before I started and decided to quit. I slowly ramped down my dose to nil and now the only Rx I am taking is Keppra (anti-siezure). Now I am back where I started, the headache is perpetual but not especially painful. This leaves me functional but not very happy- just as I described in the aforementioned post. This experience over the past year has fortified my disdain for pharmaceutical drugs. I need to find a natural solution for this.

Next MRI is in November, I don't expect any bad news.

Its not all bad - I can see the light

I was looking through my recent posts and got the impression that my life is miserable. This is far from the truth, day to day I am a happy go lucky dude. This blog is a series of snapshots into my life, and I usually take a picture when I am down - so that's only what you see.  I guess writing about the down makes me feel better. That said, its been a rough week.

Last week I found out that my pen pail friend from AZ that was diagnosed with the same tumor as me when I was in treatment has passed. 18 months from diagnosis to passing. This alone is depressing, but loosing my only confidant and friend in Brain Tumor related maters has left a void in my life. Understand that I do not bring up or talk about my condition and symptoms to many people.  People that don't have brain tumors usually do not understand what I am talking about and either say 'wow', and look at me like I am a psycho or laugh it off, often adding that that happens to them too.  RIP KA, I will miss you.

I have been ramping up my extracurricular activities. After my camping/hiking trip, me and the family took a trip to see my sisters in Michigan. Last week a couple friends took me to see a NFL football game. These excursions are preceded with a lot of anxiety. Just working too hard during the week seems to cause me to suffer with headaches and exhaustion for days. I worry about ruining the trip for everyone if I crash and need to go home. Good news, like the camping trip, I was able to make it through MI and WI trips having a great time and suffering little health consequence. It brings me great joy knowing that I can live alive with my tumor. 

6 Month post-treatment MRI clean

I had an MRI yesterday - Good news - No new growth. Here is the doctor-speak from the radiologist:

IMPRESSION: In comparison to the prior MR study dated 5/15/12 there is

interval mild decrease in size of the small nodule of enhancement along

the anterosuperior wall of the resection cavity in the right parietal

lobe. There is associated mild decrease in the increased cerebral

perfusion demonstrated on the prior MR study dated 2/17/12 in the same

area. No new areas of abnormal enhancement are present.

The 'Resection Cavity' he speaks of is where they took the biopsy from, a relativity small part of the tumour.  I have a question into them about whey they never comment on the much larger (10x) diffuse area. Its kinda weird that they focus on "small nodule of enhancement along the anterosuperior wall of the resection cavity". This area is smaller than a pea compared to the diffuse area that is the size of my fist.

The doctor was not concerned about my advancing tingling in my face. Again, I think he is happy to see me walking around. We decided to stop the Tramadol for the headaches. He is of the opinion that any medication that would help this is going to have undesirable side effects. I told him about the metaphysical things I have been trying (mediation) and surprisingly he said that was a great idea, much better that using medications. He also said acupuncture 'can't hurt' - what do you have to loose?

Lastly, I asked him about the frequency of these appointments and MRI's. To me its pretty obvious that I am doing great and getting a MRI every 3 months seems like a waste of time and money.  He said that the plan is to stick with the quarterly exams for up to 5 years, then go to once a year., assuming my condition does not degrade.  This tells me that my current health has little to do with the probability of further growth, and his concern does not subside till the 5 year mark. Putting the pieces together, Remission starts at 5 years. I am about 2 years past diagnosis and looking good. I can live with that. 

Brain Tumor Goes Hiking

I am still having continuous problems with headaches and endurance. Two years back, my doctors would tell me that I would have to discover the 'new me'. I am starting to accept that how I feel now may be the 'new me' , and I cannot let this poor state hold me back from the things I love to do. In this spirit, My Son and I, with my BFF and his Son went camping and hiking over the weekend. I was very worried that I would not be able to do this, or would pay the consequences like I did on previous smaller excursions. Good news - the weather was gorgeous, the trip went off without a hitch, and I am still standing the day after. Brain Tumors can go camping!

Me and my Son about to enter the mysterious cave

Roughing it

You can see the rest of the pictures here. Here is where we went.

You can Do It. Live Alive.

MRI next week. Not expecting any changes, not worried.
Thanks for reading, and many thanks to those who leave comments with encouragement.

Scary Day

I call my brain a zinger because of the resemblance of my MRI's to a hostess zinger:

The frosting is my hair, the cake is my scull, and the creamy white filling is my tumor. From the outside you never would know about the filling until you bite into it.

I also get very sharp, but short headaches like someone is stabbing me in the brain with a pen. I call these 'zingers', and they generally happen 2-3 times a week.

Today I had two really bad zingers (Head pains not the snack). Two in one day is odd, and two bad ones really shook me emotionally. My daily life is pretty challenging, but I have been dedicated to plowing through the daily headaches and exhaustion to live large. I have read a lot of other survivor stories about having seizures and waking up in the hospital. To date I have been blessed and nothing like that has happened to me. Today I could see that happening. Although the pain only lasted a few seconds, the aftermath was a glimpse into the future that I carried all day.  I know brain tumors usually don't get better. I know all the treatment I went through was an attempt to slow the growth. I don't think about these things on a daily basis, I ignore them the best I can. Today they slapped me in the face, now fearing that I might wake in the hospital tomorrow.  Time will tell, time heals, and time to stop my whining. I will wake tomorrow and give it my best shot.

Found Some Headache Relief

I went to go see the pain specialist for my continuous headache. She prescribed Gabapentin  - a drug for relief of neuropathic pain. She also said that I should consider acupuncture.

The Gabapentin trial did not go well. I was only taking 1/3 of the prescribed dose (100 or the 300mg/day) as a ramp up for a couple days and I developed severe gastro-intestinal problems...and still had the headache. I called the Drs office and the nurse said to stop taking it. It was a miserable week.

There was some fruit from this episode. The doctors suggestion about acupuncture got me thinking. Being an engineer, I have a very analytical mind. The idea of acupuncture and qi in general, in my opinion, is a mind over matter mechanism. So I thought to myself, can I skip the needles (and save lots $$$) and just train my mind to overcome the headaches? So I set off on a quest to convince myself that my head does not hurt.

I have a pretty intense mental process that has server me well in my career, being able to concentrate for very long periods, and continuously dissecting problems has made me a successful engineer. When I 'got sick' a few people said that I would have to slow down and take it easy. I have recently realized that I don't even know how to do that. My mind is constantly running.

Now this might sound weird, but note I am not a normal person. In the spirit of talking myself out of my headaches, I would drop everything I was thinking about and 'confront' the pain. I clear out all my thoughts and gently focus on the pain. I look inside myself and isolate where it hurts.  Without my mind churning on the problems of the day I am able to only feel the headache as if it were separate from my body. In this state, I would take the positive sensation of deep breaths and direct it to the pain. I have to keep my mind very quite while doing this - no other thoughts. With each deep breath I can feel the pain subsiding. After about 5 minutes the pain is gone and I can move on with my day.

Some might say, well, this is what 'taking a break' means, duh. Up till now, this has been a foreign concept to me. Its working great for me, and I am further pleased that I am taking less medicine.

Perpetual Monday Morning

I am sorry that I have not wrote in a while. I am doing well, well but quite boring from the brain tumor facet of my life.

The left side of my face still tingles like I just got slapped when I rest. This has not progressed much since its onset a few months ago. Sleeping is not restful, I wake every day with a hangover feeling like I only slept for an hour or two...that Monday Morning feeling....every day. This sounds depressing, but I keep my head up and a smile on my face.

I am going to see a pain specialist next week to see if I can do something about my chronic headaches. 

I am still working full time, better that 40 hours per week. I have been spending a lot of time with my family, including frequent baseball games watching my Son play. I have also starting practicing more with the garage band I am in. Hoping to squeak in a camping trip too. Keeping busy indeed. 

So I'm still kicking...thanks for reading.

3 Month post-treatment MRI seems clean

I had an MRI today. Oncologist said it looks OK to him, but will wait till report from Radiologist. This waiting means nothing because if the Radiologist disagrees, the Oncologist has seniority.  So I'm good.

What about the increased headaches? Take more tramadol.
What about the tingling left hand side of my face? Well, this is more interesting, but he did not seem concerned about this. He said that my brain is 'changing'. Changing can include things like long-term results of the radiation, not necessarily tumor growth.

I think he is looking for much more serious issues, like not being able to move a limb or feel my hand.

Well that's fine, but it is maddening to know I have a BT, have a screaming headache, and my face tingling like it fell asleep. I guess, I know it can be worse.

I am wondering why he even wants to see me if I can walk in.

p.s brain fart - this was originally posted as "6" months post-treatment, its only been 3.

How can I tell if I loose my Judgement?

One of the more disturbing symptoms of brain tumors is 'loss of judgement'. Seeing Brain Tumors are a degenerative disease, I am always on the lookout for new symptoms as an indicator that the tumor is progressing. Physical things like numbness, loss of vision, weakness are easy to recognize. I take a look at mt left hand daily to make sure I recognize it as mine. Psychological symptoms are another story. It scares me because I don't think people realize when they are loosing it. I do a lot of reading on message boards and blogs of fellow BT survivors, and I occasionally see messages that are obviously not constructed properly, like "du,..um in blay, cot". The author probably thought what they wrote made total sense.

At work, I make a habit of reading messages I send to make sure they are what I intend to say. I get interrupted a lot, so I always double check before I hit send. The other day I noticed a message I sent:

"some 096-9XXX files don’t habe the .ini file attached. I recall they are stored somewhere on G:\, con you point me there?"

"con", "habe" Are obviously not correct. How could I mess up such a simple message? "I" was probably not there what I hit send.

Personality changes are another symptom of BT's. I have consciously made some personality changes. The prospect of having your life cut short changes your outlook on life. In some situations I now take a 'I don't care' position. Living with almost constant pain also makes me short-wicked. But there are some things that happen that I don't understand. I relationship at work has fallen apart to the point where a co-worker will not communicate with me. I pride myself on my ability to get along with everybody. I gave him an general apology for what might have caused this, but still nothing. I worry about being discriminated against because I have a BT. Do people think that I can't perform engineering tasks because I have a BT, and just write me off? "I" think I can do my job, but I'm not 100% sure who I am anymore. Perhaps it's 99%, like a crack in the dam.  

MRI coming up in mid May

My regularly scheduled (every 3 months) MRI is coming up in two weeks. This one is going to be at the new Hospital at Rush University on a brand new machine. I hope it is not as noisy. MRI machines are very loud.

I'll be interested what they say about the progression. That numbness feeling I get around my left eye has grown up onto my forehead and and sometimes down my cheek to my jaw. The doctor seems to dismiss any change in the MRI's due to a lack of symptoms. Perhaps the doctor will say this is not a symptom if they don't see any progression on the MRI.

Other than the face tingling, I caught the flu for the third time in life a couple of weeks ago. I felt better for a couple'a days, then I have been fighting bad headaches for days on end since. Norco is the only help when the headaches get bad. I've been poppin those a lot lately.  

I think about all the possibilities a lot, but I do not get depressed about it. I have a what ever happens happens attitude about it all.

Unsolicited contact from NO Nurse

My Neuro-Oncology Nurse dropped me a note this week asking how I was doing. This was quite unexpected, I have called their office a 'cancer mill' - I think my doctor has a 100 patients at a time. For someone there to take the time to contact me added a lot of compassion to their otherwise cold and calculated office.

I told her about my frustration trying to get in shape. Strenuous exercise seems to make me sick. She responded that my body is telling me its not ready for that, the brain is a slow healer, and to give it more time. Not what I wanted to hear, but her insightful advise is probably right on. I'll stick with low impact exercise for now.

2 Months Past Treatment

I have off of chemo for two months now.
During Chemo, I would have to take two days off of work for the last two days of the cycle. I would be so exhausted, my head would hurt constantly, and none of my thoughts were clear. The following weeks would alternate between good and not-so-good.
Off Chemo, I have the similar problems, but a much lower intensity. I no longer have to take time off of work, and am working full time as an Engineer taking on challenging projects. I still have good and not-so-good weeks.  I wake up with a hangover-type headache every day. I still take the Tramadol pain medication daily, which helps a lot.

I have not felt 'great' - as in the moments before my first MRI. I don't know if it was the Chemotherapy Radiation and Psychological issues (CRaP), but daily life is a challenge like a heavy weight on my shoulders. If this ever goes away, it looks to be a long road. 

I have been venturing out of my hole. Went to a couple concerts, a local one and a big arena one.
I feel much more confident in 'dangerous' activities like swimming and biking.
Any big outing requires a day of rest beforehand.

I am still having problems exercising. It seems that I can do easy activities like walking for long periods. As soon as I get my heart pumping I get dizzy, and I get physically ill (fever) the next day. It makes me scared to exercise.

Some strange symptoms I have been having; Numbness feeling around left eye/temple that goes away the moment I touch it. My left eye occasionally has muscle spasms that last for hours. Left arm occasionally feels real week, I feel the need to hold it in a sling position when I walk around. My jaw has some uncontrolled spasms when I am going to sleep. Sleeping is totally different now. I often have the sensation that my body has fallen asleep when my mind is fully awake. When I wake, it does not feel like I slept at all.

This is not as bad as it sounds, none of this holds me down. I trust that if I keep pushing, things will get better. I'm just throwing this out there for other BT buddies to have an example of what to expect post-treatment.

I'm really looking forward to camping in the spring....

Break'n the Law, Break'n the Law

I had a dream the other night that I had somehow broken the law and the feds were after me. It was just a matter of time before they caught up to me. The evidence was clear, when they caught me I was headed up the river. Can you image living like that? No long term plans. No being seen in public. Not sure of who to trust.

I just watched the movie Goodfellas (mobster life) the other night and all the Blogo stuff on the news. So my mind has plenty of source material, but I think I know how that feels.

Matt - the title goes out to you.

Body ache and fever flashback

I had another episode of severe body aches and a fever just like what happened in Feb and April of  '11. Although I have been exercising more and playing ball with my son, my body aches were way disproportionate to my exercise.  Then last night I got the chills, went to bed early and woke up with a fever. Didn't get much sleep, and walked around in a daze today. Not sure if this has anything to do with the BT  (or the treatment) but this type of thing never happened before.

News Alert: BT Patient Seen out on the town

In estimate to my effort getting on with my life, Holly and I went on a date night. I had to rest all day to have the energy to go out, and I made it through the night. We went out for dinner and a local rock concert. You can live with a Brain Tumor.

Love on the run

Good first week off chemo, bad couple days.

Last week went well, my enthusiasm for getting on with my life after chemo continues. I started exercising every day. Things went south Saturday afternoon. I got a headache so bad the norco did not help. This continued into Sunday, and I got some relief Sunday night. I spent most of the weekend in bed. This was a typical chemo bounce back I have experienced several times after chemo the past year. I hope this was one of the last. 

Done with Chemo! ...and... More fun with doctor double talk.

Last dose of Chemotherapy was last night. You would think this is a joyous moment, but it is a mixed bag of emotions. I am very happy that I won't have to go through this monthly cycle of being sick and tired all the time. I am looking forward to exercising more, biking, and hiking. All sorts of inging.

The is a dark side to this end. I kinda loose the concept that I am doing something about my disease. Now we are in a 'wait-n-see' mode. Did the radiation and chemotherapy work? I know that during treatment the tumor did not grow. Was it the treatment that was inhibiting growth?  All these questions are hanging over my head as I plow on with my life. Only time will tell.

Doctor Double Talk:
In the middle of the last chemo cycle, I get an email from the oncologist nurse saying that the oncologist did not agree with the radiologist on the last MRI report. Whoh, hold the press. Do you know how many times the doctor said to me that the MRI looks 'fine to be, but I'll defer to the radiologist for the expert opinion'. Well, this is apparently only true if the oncologist agrees with the radiologist. The radiologist said that there is evidence that the tumor is re-growing. The oncologist asked the 'tumor board' to review the MRI's and they agreed all was stable. I'm glad the panel of experts took time to review my case, but I do not appreciate the he-said she-said drama, especially during chemo week. 

"Welcome to the Living"

The oncologist said a couple of things yesterday, took a day to set in.

He regularly comments on how I am an electrical engineer, or enginerd as I like to call myself. Yesterday, he said 'welcome to the living' to me after saying that I am fine despite all my health problems. At the time, I laughed it off, and the remaining grey matter chewed on it for a day. This one statement has changed my outlook, somewhat.

My daily effort at work involves identifying problems, breaking them down and solving the individual pieces to come up with a solution. It is a very methodical, scientific process that usually gets me the solution in short order. Electronic systems behave in a very well defined manner.

The Doctor does not have it so easy. Every person is different, and the nobody understands all the rules the body uses to operate. Doctors can only help you so much. All the problems cannot be solved.

I thought that if I explained my problems accurately, he would be able to either explain why it can't be fixed, or TRY to fix it. I guess that's how it is with living systems. Kinda makes sense now, after 14 months of this.

I'll guess I'll have to man up and stop complaining soo much.

MRI Clean

Today's MRI was clean. No change. Seeing that I really did not recover from the last cycle, I am apprehensive about starting the last cycle on Sunday. I told my daughter this, and she says "Nobody wants to take Chemo!" Like duh, dad. Oh well, grin and bear it.  Don't have to go back to the doctor for 3 months for checkup and MRI. I really hope I start feeling better.

February Oncologist Appointment

Went to the oncologist today to tell him about all the problems I had last cycle and get my last chemo rx. As typical, I was feeling fine, all my symptoms had passed. I passed his barrage of neurological tests, but he was concerned enough that he ordered an MRI.

I asked about blood tests to check for the level of anti-seizure medication. He said that for the Keppra I am taking, the level in the blood does not correlate to its effectiveness. He continued that he did not think that the problems I was having were seizure related. He said seizures typically has a distinct start, last a short time, and have a distinct end. All my problems kinda came and went over a week's time.

I also asked about his initial prediction that I would be fine for a while, then my health would 'turn the corner'.  I told him that I was concerned that these problems I have seen over the past month are indications that I am starting to make the turn. Point blank question - Are these type of problems indicative of turning the corner? The Doctor then turns into a politician and says that the 'turning the corner' speech from a year ago should not be taken literally, and that he was talking about 'years' from now he would be worried about this.

I would have felt fine if it was left at that, but then he said we should do the MRI to make sure. If your not worried, why would you order the MRI? I think this is another case that when the patient complains, its the doctors code to do something...so I am not worried.

More strange problems, another issue with doctors office

Shortly after the week-long eye pain episode last week, I had another rough week. Recall that my initial symptoms included proprioception seizures, where I would not recognize my own arm as being mine. Friday night after the eye thing, in the middle of the night, I woke up and had a similar sensation with my left arm and leg. I would move them to convince myself my limbs were still there. I though I might have been dreaming, so I got up and moved to the couch. Same deal. It was not as intense as my initial seizures, but was very disturbing. The next morning, I got up and my left arm was in major pain. It was like carpel tunnel, it did not hurt until I tried to move. Simple tasks like putting on a belt resulted in cringing pain. I even howled in pain a couple of times. I would have to hold my arm against my body while walking. This last Friday I woke up and the problem was gone. It came on overnight, lasted a week, and went away overnight.

Adding to this, the psychological fear that I might be 'turning the corner' or this problem might not go away is hard to deal with. Its hard to not think about it every time the pain shoot up my arm. Shortly after diagnosis, my doctor told me that I would lead a relatively normal life for a few years, then a string of strange health issues will arise over a few months (turning the corner), then the tumor will take control. So every time something strange happens, I worry. It is very easy to blame any health problem on a brain tumor. 

My sister implored me to call the doctor and tell them what is going on, just based on the eye problems. I called the nurse and told her what was happening. She talked to the doctor, and the doctor said he wants to examine me before recommending any action. I told the nurse it could wait till the  appointment scheduled for the following Tuesday. When I looked at the appointment schedule from my last visit, I noticed the date was for next week! I called the scheduling desk and told them that I am supposed to see the doctor every 4 weeks to maintain the 5/28 Chemotherapy schedule, and they gave me an appointment 5 weeks out from my last appointment. The ignorant person they have answering the phones at the cancer center says the doctor instructed an appointment 'around' four weeks, and the doctor was booked on the 4 week mark. Rather than solving the problem, the scheduler defended their actions. It took every thread in my shirt not to explode at her. I calmly asked if I could get an appointment the following day and she says sure. They teach my kids in school to be 'problem solvers', apparently this one missed that day.

So my next oncologist appointment is Wednesday rather than Tuesday. I get to tell him about all my trials and tribulations, and get my LAST Chemotherapy Rx.

Feeling better

Eye pain went away. I took Friday off of work. A couple of Norcos and a good night sleep did the trick.

Eye Pain becoming persistent

I finished the 11th round of Chemo last week. The cycle went well, I have got the routine to minimize the side effects down to science. The last think I added was eating cardboard cereal. Actually it was imitation cardboard cereal, a mini-wheat cereal from Trader Joe's. That helped a lot with the poop shooter.

The problem started after the cycle was done. I usually feel better by Sunday night, but not this time. All week I have had this pain in and behind my left eye. It kinda feels like the muscles are constantly fighting to keep the eye strait. This is accompanied by a strange sensation that what I am seeing in that eye is not clear. I can see fine, but I feel something is just not right. Occasionally, I will get a real sharp pain like a cramp in my eye that only lasts a second. I have had pain in my eye like this in the past year, but it would come and go in a couple hours. As of now, this has been constant for 6 days now. This leads to severe headaches, the Tramadol pain medication does not help. The constant headaches lead to exhaustion. 

This has got me really, really worried. The doctor warned of problems like this because the tumor is in the part of my brain that controls and interprets sight in the left eye. I will not make a good pirate, I get seasick very easy.

No Pity Party

A old friend of mine wrote me last week, telling me that he has a hard time feeling sorry for me seeing that I am doing so well. It was nice to hear from him, and his tongue-in-cheek comment got me thinking about the whole 'pity' issue. Why do people 'complain' about their problems, medical or otherwise? The word complain is a bit strong, I am referring to when people express their woes. I don't know the answer to this, I suppose its different for any person. I can tell you why I complain, and why I write this blog. Its not for pity.

The news of my diagnosis was devastating. I never cried so much. One major problem was the total lack of hope. I have a incurable terminal illness, but 'terminal' is not well defined. I began a quest to find other people with similar conditions. I wanted to know how people live with this condition. What was their life like, what issues do they face, do they have anything that resembles a normal life? I found a bunch, and one in particular was inspirational (thanks Liz). I started this blog to let friends and family know what is happening, but now I also write to inspire others. I write to help stop the tears in an others world.  There is hope in this text.

Back to the pity party. I do need some form of pity, particularly to the people closest to me. I try very hard to meet my responsibilities, and sometimes this is very difficult and I fall short. I need some understanding and acceptance when I fall short.

Second to last round of chemo starts tomorrow. It a funny thing, I start getting the side effects before I start the cycle. I am looking forward to the last cycle next month.

When it snows....GO SLEDDING!

Happiness is bleeding

OUCH - DO IT AGAIN!

That tramadol I have been taking is continuing to do a great job ridding me of headaches. I have much more energy, so much that I have starting doing projects around the house. Before tramadol, I was constantly exhausted and did not have the energy to work on my many hobbies. A few of my hobbies seem to make my hands bleed, as seen here. I was putting up a 4' florescent light fixture in the basement, it slipped and started to fall. My stupid left hand tried to catch it. The fixture won and the skin was ripped off my ring finger. This may look like it hurts, but is evidence I am getting back to my normal self.

I explored a local hospital to watch my condition after Chemo is done. This did not go well. It takes some stern language to get the person answering the phone to let me to talk to someone knowledgeable. Once I got to a nurse, and explain my condition and what I am looking for, I could hear crickets on the other end. This is a nurse in the neurosciences office. She did not know what IMRT was (the radiation therapy I had), and I had to spell the type of tumor I have to her. She asked me to get her a copy of the MRI's and doctor reports, and they would get back to me. That was a week ago. These hospitals that advertise on TV how great they are, how much they care, and how they save soo many lives are talking about 'popular' cancers. They cannot help people with rare conditions like mine. It looks like I will be staying at Rush University for now.