Combining my Blogs

Thank you for following me during this summer and through my surgery.  It was all your positive thoughts that helped me get through some of the hardest times.  Today I am combining my blogs and will be taking this one off line shortly.  If you want to read anything else I write about please email me and let me know you would like the link.  xoxox

Andrea

More rested and possible hair styles.

I finally slept a little better last night after the recommendation from Susanna to adjust the meds amount prior to sleeping. She had assured me if was safe and that I was only a week out of surgery. I guess I was pushing myself a little too hard.

I started looking at possible hair styles in case the extensions idea doesn't work out. I am still really sad about losing most of my long hair.  Almost TWO feet of hair. :(

 
 
Possible hair style.  I found the photos online a hair style data bank, so hopefully the girl doesn't mind being on my blog.
 

Post Op

The post op visit was with Susanna Myers who is a Physician Assistant. She said I was healing nicely and everything looked good. She removed the top five stitches from behind my ear, but left the bottom two for a week more.




I have not been out in public much but the reactions I get are a bit funny. I believe the free coffee at one place and the EXTRA free chocolates at another could have been pity freebies. I guess it is not very often someone walks into their store with a half shaved head, a huge scar and an ear wrapped in gauze. Anyway, thank you to the freebies. :) Don’t forget to tip your barista!

The ear looks a little scary!

The ear bandage came lose today so we took it off and this is what it looked like under!  A little scary if you ask me.

It is still really hard to sleep at night, and I wake up every three hours in pain.  I wish that this would get easier soon.  I think I have some pressure points from sleeping in the exact same position each night.  This morning I woke up with a cramp in my left leg and had to get up and out of bed to walk it off.  I can't wait for the night I can lay flat on my back and sleep the whole night through. 

Thank you mom, who helped me wash my hair.  I felt so nice having clean hair after the last few days.  :) 

Special thanks to Auntie who brought us dinner! :) YUMMMM  It was nice having a home cooked meal without having to make it. 

Thank your Aunt Phyllis for the care package.  The cookies are SO GOOD!  My friend Dawn sampled one and stated they are the best cookies she has ever had. 

Photo taken in the shade.

Photo taken in the sun.

Waking up at home.

It was so nice sleeping at home last night! 

In order to stay sleeping on my left side, I slept in the guest room bed with about 8 pillows stuffed around me.  It hurts so much to have anything touch my neck or the back of my head, and only a small portion of my on the left side can tolerate the pillow (which makes sleeping hard.)  The doctors gave orders to keep my head above a 30 degree angle, so Scott stuffed couch cushions under the mattress to raise it up. Once I was settled in bed and all tucked in, Nike jumped up on the bed where he stayed close to me purring all night. 

I woke up every three to four hours and either got more water, pain killers or both (so I could get back to sleep.)  In the hospital they were giving me 15mg every three hours, but now at home I am trying to go with 5mg every three hours.  So far it is okay, I am in some pain but nothing I can't deal with.

After waking up Scott took me to his parent's house so that I could stick my legs in the neighborhood pool and hopefully decrease the swelling a little.  The hospital compression stalkings have been driving me NUTS! 

My neck and back feel really tight and a bit itchy. My range of motion is limited and I feel like I am walking around as if I was balancing a book on top of my head. It might be to early to know if it is permanent, but I have lost feeling on most of my scalp, but who needs feeling on their head anyways??   

Some family friends gave me a blond wig to wear while I wait for my hair to grow out. Scott's mom also gave me a brunette wig from a Halloween costume that I can wear.  This could be fun, blond one day and brunette the next and then back to blond!

Painful MRI last night, and check out today.

In order to go home yesterday, I needed to have a MRI but there was a long list of people who also needed MRIs. To make a long story short my MRI kept getting pushed back later and later, which resulted in having the MRI at 9pm. 

They took me down to the MRI in a wheel chair and once I was in the MRI area I used a walker to get to the machine.  I had to lay down flat on my back, neck and head, which increased my pain.  As I was laying there during the 40 min MRI I felt like my head was ripping open.  After the MRI I was in so much pain the nurse had to lift me off the table.  On the way back up to my room my head started throbbing more and more.  I was trying not to cry, but by the time I got back to my room the tears had started. 

Shortly after the nurse left I was in more pain than I have ever been before and crying so hard I hyperventilated.  I could barley get any words out, but asked for someone to help me and make it stop hurting.  One of the nurses came in and gave me morphine through my IV and I was told to wait. A little more than a hour later I was still in excruciating pain and was given another shot of morphine followed by oxycodone.  I was finally able to lay down on my left side/ear with only minor pain.  At this point going home was not an option. Mom stayed with me while Dad went home.

About 1am a nurse came in to take my blood sugar which I didn't wake up to.  At 5:30am I woke up from excruciating pain in my neck, head and nose (nose was squished from trying to lay my head down without the wound touching anything) and was given more pain killers.  I was able to sleep for about a hour more until the neurology team woke me up to take vitals, assess strength and to check the wound.  They said everything looked good and the MRI showed they got all of the tumors.  (When I had asked Dr. Tredway yesterday why they didn't remove the other small tumors during surgery, he stated that some of the smaller ones were actually part of the larger.) 

I ordered breakfast and after eating went over the paperwork with a nurse and was cleared to go home.  Dad called see how I was doing and admitted that he was so sorry I was in so much pain last night and that he almost cried because he saw how much I hurt. Scott arrived shortly after and together with mom's help packed up belongings to go home.

Now at home I am trying to remember everything I wanted to write about but struggle with all the events.  I guess it is time to a take nap!



 

Doing better yet.

My blood pressure is up to 117/74 so that is normal now.  The neurological team came in to look at my head and remove the bandage from the back of my head to air out.  They changed the bandage for the small tumor they removed from behind my right ear. 



I had to chuckle when I saw the photo because the doctor who checked on me and removed the bandage said, "that looks great, and it is very small."  It doesn't look small to me!



My face is really swollen still and the nurse said it will remain swollen for about 4 more days.  Cheers to having a State Puff Marshmallow face and my triple chin that has turned into a double chin! I just ordered breakfast so I will be a happy camper very soon.

So here I am in my hospital bed and trying to smile for the world, it only hurts a little.

xoxo

Low Blood Presure

I woke up shortly ago when they came into take my vitals and my blood pressure is really low.  103/46  I always hear about high blood pressure as being bad, but I don't really know about low blood pressure.  I guess I will google it now and then try going back to sleep. My head and ear really hurt right now too even though they are giving me 15mg of oxycodone and (I don't know how many mg) Tylenol!  :(

It's me, I am alive.

I AM ALIVE. 

 

My phone number is

206-598-6620

Thank you all for the prayers. Today went super duper. My face is extremely swollen though, from laying on it..  I look like a family member of the State Puff Masrshmallow Man.  I am missing half my hair :*{  but already notice a difference in numbness on my body.    They only removed the 2 large bi-lateral tumours and not the other small three that are around c1 and c2 and I am not sure why. I will ask the doc tomorrow when I see him.  Everyone keeps telling me how well I am doing and seemed to all be genuinely impressed.  If I keep it up I can go home tomorrow.  Okay enough from me as typing is a little hard at the moment. 

LOVE YOU ALL so very much.

Surgery went well

Andrea is out of surgery and in recovery. Surgery went well. They took out two tumors pressing against her spine. Thank you all for the good thoughts and prayers! I am sure Andrea will update with more detail when she is coherent again. :-)

Laura

update

Surgery started at 9:08 and is going well. They said it should last another hour or two.

In surgery

Andrea is in surgery taking a nap. She didn't get much sleep last night, so this is a much needed rest. More updates to follow when we have more info.

Laura (sister-in-law)

Less than 12 hours......

Thank you all for the prayers......if you need to reach me call 206.598.3300 sometime late afternoon early evening! LOVE YOU ALL.

Pre Op Visit

Everything went well today with all the pre op visit. I check in at 5am and surgery will begin at about 7:20am. The surgery is scheduled for five hours with a few hours after, for “wake up” time before I am moved to my room.  As of right now I will be stay at the hospital for three days (but depending on how things go it could change.) My mom, Scott or Laura will update the blog if I am not able to after surgery. I don’t know what my room number will be yet but you can always call 206.598.3300 and they will connect you to my room. Well this is it for now!! Next post will be post surgery! (LOL, that sounded funny......post post.)


PS......  Thank you for all the prayers.  I know they are working, because I am not nervous any longer. :)

New Symptoms

Yesterday after eating dinner with friends Scott and I went into an Electronic store to buy a gift for a one year old. While waiting in line I realized my upper abs felt odd. I was holding the box in such a way that it brushed my abs, yet I didn’t feel it. It felt just like my fingers felt, numb. I wondered if I should call the hospital and talk to a on-call doctor but choose to sleep on it.


This morning I woke up and realized more of my lower chest/upper belly felt numb, and then by late morning I realized that my sides were starting to feel a little numb. Scott didn’t think it was a good idea to leave the house for afternoon and I agreed.

After taking a nap I called the hospital and spoke with a nurse who was going to have an on call doctor paged for me. We are still waiting on getting a call back. I am not sure what to think at this point.

One tumor, two tumors, more.

We went from one tumor to countless tumors today. Dr. Tredway is outstanding and I know I am in good hands. However, I am in shock. A few days ago it was one tumor, and today I learned it is many. The main issue is a few tumors that are compressing my spinal cord a significant amount. One of the tumors is an INCH!!!! There are 4-5 tumors that will be removed from the c1 and c2 area of my neck. There are more tumors in the c4 and c5 part of my neck but they are more risky to remove.

WOW! Pinch me please…… yes, I am awake. In order to remove the tumors around the spinal cord they have to remove my c1 and c2 vertebrae first!!!! Here is where I don’t really understand. They have to remove bones from my body to get to the tumors??? Um… yeah… loss of words. Exactly what part of c1 or c2 do they remove?  Dr. Tredway said something about having to fuse them together after and some loss in range of motion.  I am trying to grasp this but it is hard.

The surgery will be on July 22nd and recovery could be speedy, or take more time. It will all depend on how things go during and after the surgery. *sigh* At least this will help my pain and symptoms.

Overall I feel good about what is going to happen and if I am in the hospital for a week or more everyone better come visit!!!! My mom is now an author of this blog and Scott will be to, so they will be able to update the blog and keep you posted on the progress when I am not able to.

After the Tumor Board meeting.

After receiving a plethora of phone calls this morning here is my update:

#1 Tumor Board reviewed my case and the tumor needs to come out.
#2 I have an appointment with Dr. Tredway on Friday at 12noon.
#3 Follow up brain MRI will be August 5, 2010.

#4 Dr. Mrugala wants a new MRI of my thoracic and lumbar spine since the last one was done in 2008.

Dr. Tredway's profile can be found by clicking here.

Waiting

Did I mention how much I hate waiting?  This is entirely frustrating, not to mention completely vexatious.  Is it possible to feel an accumulation of every emotion all at once?  After today, I believe it is possible and would never wish this sea of feelings upon anyone else. 

I want to write each day as I travel along the path of life and triumph over the tumor but, at the moment I am at a loss for words. 

Don't know what to feel.

My emotions are becoming even more mixed and waiting is no fun.  I want to know NOW.... what is going to happen to me.

Leaving anger, next stop frightened.

My anger is dissipating and being replaced by fear.  In July of 2007 a young lady with Neurofibromatosis Type 2, who I had become friends with via myspace went into her third surgery at U of M Hospital in Ann Arbor.  Prior to her surgery we chatted about how we lived our lives with NF and promised we would be there to chat if we ever needed someone to talk to.  Ashley went into surgery with great expectations and sadly she didn't make it out. :( 

I am not afraid to die, but I am not ready to leave my family and friends behind. I have to much I want to do in life.

Or what if I can't walk/talk/see/hear?  I don't want to become a vegetable with a master degree.

Mixed feelings, mostly anger.

Writing about this journey might help me deal and process feelings, but I have never been the type of person to write about myself or keep a diary.  Today I have a million thoughts running amuck through my mind and anger is the most prominent. I am livid and irritated that this "thing" is getting in the way of plans.  We were starting another round of IVF with PGD to try and have a baby without passing on neurofibromatosis to future generations. We had to cancel the round after one prior day of shots and postpone until we know what will transpire.  Subsequently this tumor is getting in the way of my job search, who wants to hire someone who has a upcoming brain surgery?  *sigh* "Hi, I want a job, but I have brain surgery next week.  Ideally I will be at the same cognitive state that you are interviewing me at after the surgery."  Seriously! I am extremely mad.  How dare this tumor get in my way!

The MRI shows what??

This last weekend was graduation which I was able to celebrate with family, friends and classmates.  Today is the day after my final presentation and I am done with school and can relax. NOT!!!!!! I had an MRI last night after my presentation and today was the appointment with Dr. Mrugala. I expected to have a nice short visit and tell him my leg pain is killing me but other than that I am done with school and will have to relax and hope the leg pain goes away or gets better. After all stress makes things worse, right?  In good news I reported to Dr. Mrugala that the meds are working in one way, I have only had two migraines all year. :)


Well after a few tests Dr. Mrugala becomes more serious than I have seen, and my heart falls into my stomach. What followed was nothing I was prepared for and I honestly think I went into shock as the information went in one ear and out the other. Dr. Mrugala showed my mom and I the MRIs from last June and then the one from last night. There was a significant difference in the tumor that is possibly causing my pain issues.

This type of tumor called a neurofibroma is not generally removed unless it is causing an issue. Last year when this tumor was noted in the MRI it was small and not touching anything in the surrounding brain stem area. Dr. Mrugala said that these types of tumors are slow growing if they grow at all which is unlikely. However, I should go buy a lotto ticket because the unlikely happened. The tumor grew buy a centimeter and a half (I think, like I said I was in a daze) and now is pressing/compressing my spinal cord. I don't remember the exact measurement but looks like by a third.

The next words that were spoken feel hazy to me but went something like this “it has to be REMOVED” and “it is NOT IN THE BEST PLACE.” Dr. Mrugala will take the case to the tumor board which meets every Wednesday and I will hear from him next Thursday. WHAT?? I have to wait a week? Right….. how am I supposed to feel about this?

Anger…….why this?  Why now?

Summary of the months leading up to........

June of 2009 my 6 month MRI showed no changes and I was cleared to go back to MRIs once yearly.  Starting in December I began having peculiar pains in my right wrist, hand and fingers.  I would lose feeling, experience cramping in my fingers and have shock like pain inmy wrist. The nerve pain in my legs was starting to occur earlier in the evening and I was occasionally waking up with a stiff neck.  By the first week of January my hand was feeling so bad at work, I was unable to perform my job tasks as efficiently as before.  Becoming worried I made an appointment with Dr. Mrugala who follows me regularly for my NF (Neurofibromatosis.)  Dr. Mrugala ran a few tests and determined that the hand pain, loss of feeling and cramping was carpal tunnel.  A brace was perscribed to wear while sleeping, typing, or working at the bank.

By February, the leg pain was starting earlier and earlier in the day, sometimes as earlier as lunch time. The carpal tunnel symptoms were about the same, but starting in my left hand as well. My neck pain was increasing and I woke up with a stiff neck almost every morning.

During a follow up appointment on March 9th, Dr. Mrugala asked how wearing the brace was going and I informed him it was helping a little but I was feeling similar symptoms in my left hand. He suggested I get a brace for the left hand and wear it as much as possible too. For the neck he suggested that I get a orthopedic pillow, however I already have one but decided it was time to replace the 10 year old pillow. For the increased leg pain Dr. Mrugala raised the amount of my nerve blocker I take before I go to sleep each night.

By the end of March I realizes the extent of my neck pain when I couldn't turn my neck to check my blind spot while driving.  I promptly made an appointment with Dr. Tanner who is my general doctor at the Issaquah clinic.  After x-rays and full exam she prescribed physical therapy and massage therapy which I began right away. The PT and MT began to help by decreasing my pain and increasing my range of motion.

In May, the carpal tunnel symptoms were about the same but my leg pain was occurring as early in the day as 8:30 am. I was miserable.  I began to understand why old people in pain seek Dr. assisted suicide. I would never take my own life but the amount of pain and uncomfortable feelings I was experiencing made me understand why someone might. I called my case manager at Dr. Mrugala’s office and asked her to help me and asked if I could have an MRI of my neck when I was to have the next brain MRI in June. After talking to Dr. Mrugala and he not only agreed that I could have the neck MRI in June but prescribed additional pain killers to keep me sane.

By the end of May, I was no longer able to receive PT due to a cap on my insurance but still had coverage for my massage therapy.  The leg pain was ruling my life and I hated taking pain killers everyday but needed to survive.