The hospital stay after my craniotomy

Well, I left off with me being wheeled down the hallway to surgery.  The next thing I knew I was waking up in a groggy state in a room that was the color green I had no concept of what was going on or anything else going on in the room.

Based on what I am told there were two nurses in the room along with I believe my parents and my husband and I had a wonderful friend named Anna who sat at the hospital for almost the complete 10 hours that I was in surgery but she needed to leave before I reached the recovery area so I believe those were the people there when I was waking up from anesthesia.

My sister told me that I was using rather foul language and refusing to drink Ensure and demanding potato chips which is kind of funny seeing as I had my weight-loss surgery several months before and my diet had completely changed and was not the same.  The nurses assured my sister that type of language is common and people say all kinds of things when they came out of or were waking up from anesthesia.

I asked my sister to take pictures  and my head was wrapped completely in white gauze there was a tube coming out of my scalp with blood coming through the tubing into a little pouch that was tucked into a pocket in the front of my hospital gown.  Which was collecting excess fluid I guess.

I don't remember being in any type of pain I had no concept of what time it was and I was repeatedly asking for my glasses which had been taken from me obviously during the surgery. I wanted them to see the clock.  For some reason I was very interested in what time it was. I did have several visitors after the surgery but I don't recall those visitors being there so I was filled in on that part.

You're automatically placed in the ICU or intensive care unit where you are checked on every 15 minutes literally it's all glass where people can see you at all times meaning the nursing staff or hospital staff would come in every 15 minutes.  They were checking my pupils checking all neurological things to make sure everything was going okay.  

I vaguely remember those visits. I vaguely remember having my blood pressure taken or really any other procedure that went on except for a very traumatic experience that did occur I believe on the second day that I was there. Several doctors came in as the cancer hospital I was treated at is a teaching hospital and it was time to remove the bandages from my head and instead of doing it gently they basically ripped the bandages off of my head and I remember feeling excruciating pain like I've never felt before in my life and that includes childbirth!  However I was still in such a daze that I couldn't even really process the pain or complain about it or ask for more pain medication at that time.

What is very strange to me is my very little recollection of my time in the hospital.  I don't remember speaking very much to hospital staff I do recall more of who came to visit me.  I had a visit from rehab doctors and It was recommended that I be sent  to a rehab hospital for further treatment and that if I was not sent there that my chances of a full recovery were pretty much minimal. For some reason that did not happen. My sister and other family members did tell me that I was very combative about not wanting to go to a rehab hospital.  

So instead of following the guidelines that were written out for me for discharge somehow I was just charged home with the care of a daily nurse to come and visit me to check vital signs and to check the staples that were in my head which were 45+ Staples I believe.  I was quite shocked about the number of staples and how large the incision was, which went from the peak of my hair in the front near the fore head all the way down past the ear to the bottom of the ear lobe; that was not the size incision that was discussed when I met with the neurosurgeon about my surgery.

I really did nothing at the hospital but sleep and receive visitors and even when visitors were there I was sometimes sleeping. I was sent home after three days at the hospital.  I was sent home on a medication called Decadron which is I believe a very strong steroid to control swelling of the brain I think I took that for two weeks maybe it might of been less my memory is not that great.

I vaguely remember the drive home as the sunlight was excruciatingly painful to my eyes and so my husband  leaned the seat  back  and he drove  and I had my eyes shut dozing off in the seat all the way home. I came home to a freshly made bed and a very neat and clean home as I tried to have things organized before I left.  Thanks to family and friends my sister coming by and staying with me during the week when my husband had to go back to work I was well taken care of.  The first few days at home weren't bliss as I was kind of out of it walking around in a daze.   I was inundated with love and family and friends all around me which made things a lot better however trouble began on the 10th day after being home. All was not well.... More to come in another blog entry.

Let's visit the hospital...

I remember prior to my surgery researching things incessantly; one of my double edged sword traits!  I looked up just about everything I could to help my understand this thing called a "Meningioma".  The whole thing was baffling to me.  But let me warn you too much research may end up scaring the crap out of you too.  I even went so far as to watch an actual craniotomy AFTER my surgery and I have been on a psychological bender ever since!  I don't suggest you look at it; just my opinion.

My husband and cousin, who is a cancer survivor went to my 3rd opinion neurosurgeon appointment with me.  Frankly I only remember what said just before the neurosurgeon came in and barely NOTHING during the appointnment.  We left with me staring blankly ahead.  I was scared shitless  (sorry, the best word I can think of).  But most of all, I felt alone on an island by myself; I knew NO ONE with this tumor.  I knew other types of cancer patients but that didn't help me.  I left with 2 small books on my tumor that hospital had in their library for you to keep.  That's it!  My surgery would be July 23rd and that appointment was the first week in January.

So I went home and got back to researching for a support group or something like a blog to help me through understanding just what I was embarking on.   I found two blogs that were somewhat helpful; Actually I would like to thank the bloggers for writing about their experience.  I got attached to reading one in particular but I opened the blog one morning to read the next post but it was from her mother thanking the blog readers but her daughter had died.  I was devasted and like WTHeck??

Thank GOD I found the online support group Meningioma Mamas; they are also a private group on FaceBook.  Most of the "proper" information I learned from that group and I still visit the group regularly.  I was able to actually see other tumors on cd, what some incisions looked like.  The group is amazing with support and sharing!  I highly recommend  joining as a patient and if you are a support person.

So, I am going to list here all of things I can think of that may help on your journey leading up to going to the hospital, your stay (only what occurred with MY stay) and discharge.  I will have to divide the entries up though as writing this is emotional and long.  I will write other posts on what my experience was like soon after I got home.

1) I suggest organizing yourself at home prior to surgery IF YOU CAN!; especially if you don't have a lot of hands or support or you live alone.  If you live alone maybe you can have a friend stay with you for 2-7 days.  But if not, the hospital can arrange for a nurse to visit you daily per your insurance clause.  The pre-organization plan may not be feasible if you are required to have emergency surgery, but don't fret, things will get done!!

Please make sure to explain to your children if they are old enough to know something is happening.  We had a family meeting and there was crying and hugging but I wanted my children to hear from me what the deal was and that I loved them.  I told them about who may be helping, like who would be picking them up from school.  Things that seem small to us are sometimes big deals to children.  Your child's teacher maybe should be made aware that there is a medical situation going on at home so there is open communication just in case your child has issues in class or may be nervous or scared and grades drop because of it.  Some may feel that the situation is private; follow your gut with this one.

Organize your bills by date due in a clear office container where you can see them as a reminder to pay them or pre-pay a month or two if you are able.  Make sure to write down what you've done as you may not really recollect it when you first get home.

Record your passwords and sign in names to websites ( put in a secure place) as you may be foggy and not recall them easily.

Make a list of friends and relatives with their contact info, that you can call on for help and put the list on the fridge or in a very visible place. 

Make meals in advance, divide into servings and stick reheating directions on them, then freeze.  Don't forget to label what's in the storage bag/bowl.

Stock up on groceries especially if you have a house full of kiddies like I do 

( remember we have 6 kids).

If someone is going to help with your children, like driving them to school or dropping them off just print out a blank calendar and fill it in with who is doing what on which day.  Do the same thing for your pets, like if you will have someone coming to walk the dog.

2) Realize that even with preparation things may NOT run smoothly or be perfect.  Try really hard not  to focus on that! The laundry or whatever is around the house can wait!

3) ASK FOR HELP IF YOU NEED IT!  The hospital had all kind of resources and I had social worker visit me to be sure I didn't need a nurse at home (based on my feelings and doctor's orders), which I did end up needing.   Please don't feel shy about asking.  A lot of people want to help but they are not mind readers and don't know what you need or want without being asked.  They are also nervous sometimes because they are kind of freaked out and don't know what to say.

4) Purchase thank you cards with stamps and leave them on your dresser.  Maybe have your significant other, spouse or friend write them out and drop them in the mail and so what if they are three months late or if this doesn't get done!  Only do what you can!  Your recovery trumps thank you cards!

5) Try to think of things that will make you comfy at home and have them ready.  Like a special blanket, your favorite tea/coffee. Buying new Books, movies, music and magazines, I would hold off on as you may not be up to reading or noise may be bothersome but either way go with your gut on this one.

6) Program your phone at home  and cell with important numbers on speed dial. Write a sticky by the phone telling you who is programmed to what speed dial.

7) Pack your hospital bag lightly.  This is a bit difficult to advise on as some are more alert after surgery and some just want to lay there.  My post surgery experience was not great.  I was not interested in reading, listening to anything  or getting on the internet, but I did enjoy visitors.  I would put yor iphone/cell phone, charger, list of phone numbers, robe but nothing fancy, I really just needed one because I was freezing. Travel toothpaste, travel toothbrush, a mini tube of face wash, mini tube of lotion Chapstick and that's it.  Trust me, you will not need much at all and if you forget something ask your nurse or someone from home to bring it there.  Hospital stays vary but I was there for 4 days and due to unexpected occurrences it was recommended that I be discharged to a rehabilitation hospital ( I will tell you about this later).

8) Dress lightly in loose fitting clothes.

9) If you have a question ask it!  

10) You will be given instructions for check-in.

11) I was checked in and sat waiting with my husband to be called back to be prepped.  My parents came later tan us but before I was scheduled to be called back to be prepped.  I was so nervous that I thought I was going to faint.  Up until then I had been very "put together".  Well the cancer hospital I had surgery at required you kiss and say good by to loved ones in the triage area. I saw this nowhere in the pre-printed materials.  That info was posted when I checked in; ridiculous!!! At first I just did what they told me, but then I demanded I be able to see my husband and parents before being wheeled away.  ASK OR DEMAND IF YOU HAVE TO IN ORDER TO GET WHAT YOU NEED before being wheeled off.  However try to be nice to your nurses as they take care of you 24/7 and have a very taxing job!!  I value their care!

12) I was hooked up to all kinds of monitors, an I.V.,  doctors I didn't even know came to confirm medical info and ask questions for anesthesia safety.  To me it was a whirlwind of chaos and I am a control freak so I definitely was boo hoo crying.  I had these white things placed on my head and I had to have an MRI right before surgery.  That MRI helped map out the tumor but it wasn't perfectly accurate at all!

13) what was supposed to be a 4 hour surgery turned into a nearly 10 hour surgery!

13) I kissed my husband and parents goodbye and I was whisked down the hall to a surgery that surgery has changed my life forever....

The saga will continue in my next entry...

Sleep, oh lovely sleep

I was never one who had trouble sleeping.  Trust me, I used to get my 8 hours in!  I am mega grouchy when I am tired!  I should have guessed I had medical issues when I began waking up several times per night with some kind of ache or pain.

Like tonight, I am up in pain but I have found some fun things about being up at night! 1), it's quiet; thank you Jesus! 2) I get to catch up on my DVR'ed TV shows; I am literally addicted to taping stuff and not watching half of it, LOL and 3) I can roam around my house without hearing "MOOOOMMM!

The night time can be the right time to be with one you love and that happens to include myself.  Toodles, off to watch the Little Couple on what else?; The DVR!😉

Well at least I am moving more

Ultimately I know that moving my body is the best way to re-gain my health but some days I just don't want to and other days I barely can, like today.  I went to an Avon meeting last night and I really did push myself to attend.  I have only been to one meeting before and I knew I was missing out on some good information to help run my business; I'll cover how I do that in another post; I am just too out of it to blog about it now.

Anyway, attending the meeting was kind of comical in a way as I was bumping into everything, including people and displays.  So much so I felt compelled to tell people I barely knew that I was ill just so they didn't think I was drunk, LOL.  

I took my anti anxiety medicine and my scheduled pain medicine before I left home so I was a hot mess!  You may ask why I did that, well without my medication my butt would have been on fire because I barely have any cartilage or bone there and since I lost weight there sure as he'll isn't 100 pounds of padding to sit on anymore!  My anxiety medicine, well that's self explanatory.

This morning I am showing you what my lovely ankles look like from an arthritis flare and this is mild on the pain meter.  They are hot, red and swollen along with throbbing.  This is one of the days I am wondering if all this hard work I am doing to get better is worth it.  Do my ankles look better?; um not to me.  Let's not even talk about my butt and having to lean to one side because sitting flat feels like a steel rod is being rammed into the side of my butt!

This morning I am not in a positive mood at all!; Can you tell?? Oh & the highs and lows of being ill can kiss my ass this morning.  I don't care if I move it, as "they" say!  I am going back to freaking bed!

Living in pain

This is a broad topic that will most likely come up over and over again but in different aspects.

When I was a very young girl pain meant an unpleasant sensation from a paper cut or an ouchie that hurt for a little bit of time but was guaranteed to go away.  Well, that was when I was a young girl, not a woman with Osteoarthritis, Rheumatoid Arthritis, Raynaud's , excruciating headaches since my craniotomy, 2 bulging discs in my neck, a rotator cuff tear, degenerative disc disease and jaw pain from where the muscles overlaying the jaw were cut to perform the craniotomy, G6Pd deficiency, chronic anemia, high blood pressure (funny I have this issue seeing as I have lost 150+ Lbs) and diet controlled type II Diabetes; No meds needed for this one.  Anyway, now pain and I are BFF's!!!

Aren't Best Friends For Life always around?  Well so is my pain, but not in a giving, loving way.   I am in some form of pain EVERYDAY!  Pain than would make a grown man cry!  Hell, I am up now blogging because I can't' sleep due to throbbing feet, hands, knees and hips.  I started to get angry about the pain and why I must be the one to endure it.  What did I do that was so wrong that this is my plight; what,Am I going to have to face this for the rest of my life?  I would walk around my house saying "this is bullshit" and all kinds of negative tapes played in my head day in and day out!  I also felt trapped.  Like a game show host might say "Here are your choices; live in excruciating pain or visit the pain treatment center" where I will have to get narcotics to help me move.  Lovely choices Dahling!!!!   NOT!!!!  What kind of freakin prizes are those???  I freakin hate this game show and I want off and to be on the pain free game show!  But I have a secret...

I have finally realized that there really is a 3rd prize but for me it had to be uncovered by establishing a STRONG relationship with GOD and following his lead.  In the pain department his direction has led me to a wellness group where finding the positives in a situation and using coping techniques are taught.  I will begin seeing a psychiatrist so I have someone objective to talk to and I am learning to meditate.  Pain sucks but it is a part of my life but I choose to seek the positives, no matter how small.  Heck, without the head pain I would still have a nice size tumor in my brain...see I just found another positive!

One more thing.  I am by no means diminishing pain and the havoc it causes in your life.  Others, please treat those with pain issues with love, compassion and understanding.  Just because you don't see another's pain doesn't mean it isn't there!

Introduction

Hi all!  This is my first blog post on something you may have never heard of until 1) you were diagnosed with one or 2) you know or care for someone who has/has had one.   What I am talking about is a Meningioma - a type of brain tumor.

Meningiomas are often benign but some are not.  Benign or not they are still dangerous and can cause all kinds of problems for those who suffer from them.  The tumors are typically slow growing and according to my research, have been found on a MRI scan while looking for other problems.  Such was the case with me.  My "M" was found while looking to rule out Multiple Sclerosis.

The year was 2012 and it started off wonderfully as I had finally had weight loss surgery which I had been hoping to have for years.  I was morbidly obese all of my adult life and with my other health problems I felt that I needed to do something drastic to help me take the weight off.  As a matter of fact I started a blog regarding that life event and never continued updating it because of the story I am telling now.  Anyway, I had the weight loss surgery in January 2012 and  was attending Graduate School but struggling with weird medical symptoms.  I have rheumatoid arthritis, so any ache or pain I contributed to that and kept on with my busy life.  I have been married for 19 years and we have 6 beautiful children, 18, 16, 14, 13 and twin 11 year olds.  The symptoms ranged from headaches to mysterious burning patches of skin ( that was the sensation I felt).  I remember almost fainting in a neighbor's driveway, having horrible, sharp pangs of  random pain out of nowhere; the list could go on forever.

However, one day I was at the hospital pain clinic to get a steroid injection in my neck; I have 2 bulging discs there, and as usual the doctor came in to examine me first and explain the procedure even though I had it done before.  She studied my face and performed some standard neurological tests.  The doctor then asked me how long had the left side of my face been drooping.  I was puzzled because I hadn't noticed any drooping.  She turned to my husband and asked him had he noticed it and he said no.  She brought in a fellow doctor for a second opinion and he concurred that there was definite drooping on the left side.  I was told to see a neurologist in no more than 5 days, given a name and sent home without the steroid shot.

I went to the neurologist and she confirmed that I had what is called Belle's Palsy which causes facial drooping/paralysis on one side of the face.  I was examined thoroughly and asked a lot of medical history questions.  Based on the exam and my condition at the time the doctor suspected I might have Multiple Sclerosis.  A Brain MRI was ordered and it revealed the Meningioma.  I was given the MRI disc after the test to take to my neurologist but curiosity got the best of me.  It was a Friday night and I along with my oldest daughter put the disc in the computer so we could see my brain.  Well, immediately I knew something was wrong as there was this grey blob on one side and not on the other.  I shooed my daughter away and literally googled the image and the words Meningioma and tumor jumped off the page.  I was sweating and quickly took the CD out.  I tried to go back to business as usual but little did I know I would be on an operating table 1 month later undergoing a 10 hour life-threatening craniotomy.  My tumor was wrapped around the left carotid artery, had invaded my cavernous sinus, was millimeters from taking my eyesight and more.

Thank God my tumor is benign or a Grade 1, but not all of the tumor was able to be removed and I also have a brain aneurysm that is being watched via brain MRI's every 6 months.  I have right sided weakness and walk with a cane.  Mostly 1/2 of my head was shaved bald from the surgery and it hasn't grown back so I either wear scarves or a wig.  At times I experience slurred speech, the fatigue I experience is like nothing I can describe to you.  I have anxiety issues now, problems with balance run on speech and or telegraphic speech along with Broca's Aphasia.  I search for words often in face to face conversation.  I have seizures and as of today I still have no driver's license.  I went to speech, physical and occupational therapy at a Traumatic Brain Institute and that helped in the initial recovery.

Anyway, this blog will be about my life post surgery and all of the different things I am learning not just about myself but about mankind as well.  I may blog daily, I may not.  However, I will be constant with my thoughts and feelings, so the blog will be pretty active.   Since the craniotomy I have had an overwhelming need to express myself and write.  So, here goes!  Thanks for taking this journey with me!