One Week Anniversary

I can not believe it has been 1 week since I had my surgery! Things have been going OK I guess. Today is the first day I've been able to get upstairs at my Mom's house and that is where her computer is. I REALLY appreciate all the well wishes that I have received! I'm pretty wiped out right now but am slowly recovering. I hope to be able to post a bigger update tomorrow or this weekend and I have a number of pictures too. I'm still seeing things with a bit of double vision and my left eyesight is blurry, but at least I can see out of my left eye and it will only get better as all the swelling goes down and I continue to heal. I have just spent about 30 minutes online reading the comments posted here and am going to go take a nap now. Thank you all so much for your support and love...I know it is what helped me be able to get through this surgery and on the road to recovery :-)

Sue

Sue Goes Home!

I left the hospital today (see photo of being ready!) -- I’m going home to my Mom’s house. I had a hard time sleeping last night so I’m hoping that by going home I can get my rest and sleep – the woman I’m sharing a room with snored all night long rather loudly. Dr. Black said I’m doing much better than he had expected me to do and even is calling me a “rock star”.

I walked around the hospital and up and down the stairs with the physical therapist who also decided that I could go home.

I had a nice visit from Bette Bryant (see photo) from the Brain TMR list and several phone calls from friends and my family.

I watched NASCAR while waiting for my nurse to give me my release orders -- unfortunately my favorite driver came in 22nd.

I will post something new in a few days.

Sue

Sue Update

Hi everyone! Kris, my stepmother, is writing this for me. I’m sitting in my hospital room where I can see Fenway Park out my window and I can wave to the Good Year blimp as the Yankees decimate the Red Sox yet again.

I’m doing fine although I do have a huge shiner (see the picture). We’ve taken other pictures that we will post later. I got out of ICU at noon today and will probably be released on Monday or Tuesday to go to my Mom's.

I'm still waiting to get a decent meal. They cut my jaw muscle so eating is a bit challenging. I just looked at the carrots and the hard sandwich that came at lunch today. I’m hoping that I get my macaroni and cheese tonight for dinner.

Dr. Black says he believes he was able to remove all of the tumor and that it doesn’t appear that it was malignant. The pathology report will be available in 1 week. The tumor was a little bigger then Dr. Black thought and that’s why the surgery was longer than anticipated. The good news is that I am able to see out of both eyes, even if it’s two of everything for awhile.

I am in Tower 10C room 59.

Thanks for all the well wishes. I’ll be back in a week or two.

Susan Survives

Sue is doing fine. She went to surgery at 7 AM today (Thursday) and the surgery began at 9. The tumor was larger than expected and more difficult to extract. Surgery ended about 5 PM and Sue will spend about 24 hours in the ICU. The doctors believe the whole tumor was extracted and that it is benign, but will not know definitively for about a week. She is groggy but coherent. Sue appreciates everyone's positive thoughts.

Surgery Tomorrow

Well this is it. We are leaving in a little while to head up to Boston. Hard to believe that tomorrow at this time the surgery will be wrapping up and I will be on the road to recovery :-)

This morning Frank's cell phone rang at 6:15am as he was getting ready to leave for work. It was his boss telling him to take the day off WITH PAY so he could be with me the day before my surgery. That was so-o-o nice! Now we can go to the hotel together instead of Frank trying to find his way up there in the dark (he hasn't been up to Brigham & Women's before). This morning I realized that this will be the first time that we will have stayed in a hotel room together since our honeymoon 17+ years ago, that is pretty pathetic.

Everythings packed, fish tank water changed, and all dog crates and bowls labeled for Gary, Frank's good friend who will be taking care of the dogs that are still here. Gary is on his way over now to go over everything one last time.

So now is time to fulfill the title of my blog...Tomorrow Dr Black will go into my orbit and then in a week or so I will be back. Thanks to everyone who has sent well wishes, called, and especially to those of you who are puppy sitting my Setter kids for me! As of last night I had received 156 emails from around the world wishing me luck, I haven't added the notes I've received today to the list yet. When I get back I will try to chronicle the whole experience so if anyone else ever has to go through the same thing they will now what to expect.

Take care all, love ya!

Sue

Hospital Schedule and Information

Today is the day before we leave to go up to Boston for my surgery. I can't believe how fast the time has flown by! It is only 60 miles to the hospital from our house but since I have to be at the hospital at 5:30am on Thursday morning we decided to get a room at the Best Western Hotel that is 100yds from Brigham & Women's Hospital. My Mom will then stay at the hotel Thursday night so she will be with me on Friday too.

My surgery is scheduled for 7:30 am Thursday Aug. 17. It will be 4 to 6 hours long. Frank and my Mom will be able to be with me until they wheel me away to the operating room. They will then be taken to the Bretholtz Center for Patients and Families in the hospital, which is right behind the main information desk at the 75 Francis St entrance. They will be given a beeper (like they give you when you wait at a restaurant) so they won't have to stay in the family center if they would like to go back to the hotel, get something to eat, or take a walk. When there is an update during or after the surgery the beeper will vibrate. All they have to do is go to the Family Center desk and they will be taken to a small cubicle and given a phone where they can talk to Dr Black. Once I am in recovery/NICU the beeper will buzz again and they will be taken to see me. I have talked to a couple of people who have had similar surgeries and they said that their family wasn't updated until the surgery was over, so I hope people don't get too anxious waiting for an update. Once my Mom has heard anything she will call my Dad and he will be updating this blog. He is flying home on Thursday but will have his laptop with him so the updates should be posted fairly quickly once he receives them.

You can also call the hospital for an update on my condition, "Family members at home can call (617) 732-7440".

People have asked for the addresses where they could send a card. For anyone wishing to send something to the hospital I should be there from 8/18 thru 8/22 at least. Here is the address:
Susan Linhares
room number (call 1-617-732-5164 if you don't know the room number)
Brigham and Women's Hospital
75 Francis St.
Boston, MA 02113

When I get out of the hospital I will be staying at my Mom's the first week:
Susan Linhares
c/o Diane Carhart
11 Jeannes Way
Forestdale, MA 02644

For anyone who is planning on visiting me the hospital is located at 75 Francis St in Boston. All I know at this time is that I will be in a room on the 10th floor which is the Neuro floor. When you enter at 75 Francis St there is a large information desk right in front of you and they will help you find my room. We usually use Route 9 to the west of Boston to get there instead of going up 93 into Boston. It saves a bit of traffic aggravation. Here are directions from the hospital website for anyone who is traveling from the South. More directions (and other info for visitors or about the hospital) can be found on the B&W website http://www.brighamandwomens.org.

Take Route 128 (I-95) north. Take Route 9 east for six miles. Take a left onto Brookline Avenue (Brook House Condominiums will be on right). At third set of lights, turn right onto Francis Street. The hospital is one block down on the left.

Phone calls are allowed but it has been stressed that I keep them to a minimum since this type of surgery causes extreme fatigue. Also, since there are two beds in each room I wouldn't want to bother my roommate with a constantly ringing phone. If you feel that you would like to call the main phone number at the hospital is on their website (link is above).

Well I think that is all for now. If there is any info that I may have missed just write a comment or email me and I will add to this post.

Lets Not Rush Things

I received a phone call at about 4pm today from Heather, Dr Black's Surgical Coordinator. She told me that Dr Black had a cancellation and they wanted to do the surgery tomorrow morning! What?? I explained that I didn't think it would be possible since my family had all been planning on it being Thursday taking time off from work and flying in to visit. I also have an appt with my orthopedic surgeon who wants to make sure my elbow is comfortable while I'm in the hospital. Heather said it was totally up to me but they wanted to offer having the surgery a couple of days early. So I told her that I would stick to the original date and see them Thursday morning.

I've been planning on Thursday and still have a number of things to take care of before I head up to Boston Wednesday afternoon. That phone call sure was a surprise, I'm glad I didn't have to change the surgery date!

Next week at this time I might be able to go home to my Mom's :-)

Like Mother, Like Daughter?

When my mother was a teenager, back in 1957, she fell off her horse onto pavement and fractured her skull (a dog spooked the horse). I believe it was called a double basal compound fracture. She was in a coma for several weeks. They had to remove the bones covering the back of her skull due to both the fractures and swelling, and they had no idea if she would make it. Well, obviously she did :-) She has lived almost 50 years with a plate covering the back of her skull and has been on dilantin all that time to prevent seizures.

Now it is about 50 years later and I will be having surgery to remove this tumor along with a couple of bones in my head that will be replaced with titanium and I will be on dilantin. I know my Mom is worried about me (as are all my family and friends), but wonder, is this payback for the worry she put her mother through way back then ;-) Kind of like the old saying "Just wait until you have a daughter/son just like you" (lol)

Several people have called and emailed to ask if I was nervous or worried about the upcoming surgery. I'm really not worried too much, especially compared to all my Mom went through and survived...and that was 50 years ago at St Lukes Hospital in New Bedford, MA (shudder). I have the best doctors and Hospital, will have the surgery with Dr Black using an interoperative MRI, and they only had an xray for my Mom's surgery! I figure that other then a headache this has to be better then abdominal surgery since I'll be able to eat sooner and won't have staples from hip to hip. Mostly any anxiety I'm having is with the unknown. I'm the kind of person that checks out everything before a vacation and doesn't always like unexpected surprises. I also like to be in control a bit too much at times and tend to hate the idea of people having to change their lives to take care of me. With this surgery I will not be in control of anything for about 2 weeks or longer afterward so that is bothering me just a tad. I tend to make a lousy patient and can give good advice at times, but rarely listen to myself (grin).

Next week at this time I will be in my regular room getting stronger every day. Since there are two people to a room I hope I have someone nice and not someone who thinks their husband is hiding under the bed (you had to be there, lol).

Five Days Before Surgery

The days are seeming to fly by now as it gets closer to surgery day. This afternoon I drove to N. Stonington, CT to meet Karol P, who will be taking care of my youngest Gordon Setter "kids", 12 month olds Heater & Calleigh. It was so hard to have them go, but I know it is for the best. Driving home it took a bit longer then the normal 1 hour 20 minutes due to several accidents on 95N & 195E. By the time I got home I was very aware of one of the reasons I'm having this surgery. I had an incredible headache behind my left eye. Extra Strength Tylenol has only made it subside by half and that is the only pain reliever I'm allowed to have. I finished my dog chores so I can get to bed early tonight (early for me is about midnight LOL). I've been getting these headaches for a couple of years actually and used to tell Frank I thought my van must have an exhaust leak because I'd usually get them after being at a dog show and driving home in my van. I know now, after talking to the Drs, that running around the ring was making pressure on the tumor and then the driving and paying attention to the road would strain the muscles behind my eye near the tumor and further anger it, hence the headaches...Frank kept telling me the exhaust on the van was fine, I guess he was right, especially since I didn't use my van today (LOL).

I've received some very nice cards from friends and also a couple of folks that I have never met but we belong to the same email list or forum. What a nice, thoughtful surprise! The cards and emails are very welcome and appreciated because it sure helps to not feel afraid or alone when I know people are thinking of me :-)

Next week at this time I will be out of ICU and in a regular patient room at the hospital.

Pre-Op Appointment

One week before surgery, aka the day it starts to seem very real. Today my Mom and I went up to Brigham & Women's Hospital in Boston, MA for my pre-op tests; blood, urine, chest xray & EKG (I think it was an EKG, they hooked my up with a number of wires and checked my heart). I also talked to the pre-op nurse, who took all my information, and an anesthesiologist. That took about an hour and a half. Then we moved to Dr Black's office to speak to his nurse Nancy. She was very nice and answered all our questions. We were also able to get an authorization letter so we could get the patient discount at the hotel. I was given a number of more handouts and a pamphlet titled "5 Steps to Surgery" that has what to expect while at the hospital after surgery. Once we had finished with the appts. we were hungry and decided to try out the hospital cafeteria. The food was really good! My Mom had broiled scrod with rice and I had beef stew. They have valet parking for patients so I went to pay and before we knew it the car was in front of the hospital. $12.00 for six hours valet parking was so much better then the $23.00 for two and a half hours for regular parking at Mass Eye and Ear! We drove by the hotel we will be staying in the night before and noticed that they have a food court on the ground floor with, among other restaurants, a Dunkin' Donuts for Mom's coffee, Orange Julius/Dairy Queen for Frank, and Beantown Burrito for me :-)

Some of the things I found out today....
- The surgery is called a left frontal craniotomy.
- My hospital room will be on the 10th floor of the "Tower" (the Neuroscience floor) once I'm out of ICU.
- I was given a special surgical soap called Hibiclens to wash with two days before, the day before, and the morning of the surgery.
- Frank and my Mom will be given a beeper when I am admitted prior to surgery. That way they will be beeped when there is an update during my surgery. They will be able to go back to the hotel for a bit or get some breakfast and not worry about staying in the "family room" at the hospital. Speaking of the "family room" it is a really nice place for families and friends to wait while someone is in surgery. It has nice comfy chairs, lots of TVs, computers, a library, cubicles or private rooms if you want to wait in privacy, and is right under the cafeteria and patient rooms.
- Once I have my IV in Frank and my Mom will be able to stay with me until I'm wheeled to the operating room. They will then see me again in 6 hours when I get to ICU (I'll be in ICU for about 24 hrs after the surgery). Dr Black has the operating room booked for 6 hours for my surgery.
- I signed a paper donating what is left of the tumor after the pathology test and two vials of blood to a research project Dr Black is undertaking. I figured I didn't want it back so he might as well make good use of it (LOL).
- During the surgery they will cut my left jaw muscle (why?) so eating will be difficult for a while. When I wake up I will have 2 IVs, an arterial line, catheter, oxygen, the compression boots that prevent blod clots, and lots of beeping and buzzing machines all around me.
- When I go home I'll be on the following medications: anti-seizure because they will be working near the front part of my brain (dilantin, like my Mom has taken for years), steroids to help prevent swelling (decadron, 1 pill equals 10 prednisone from what I was told), pepcid to help prevent damage from the steroids, pain meds, and a laxative because bowel movements put pressure on your head and that would be very bad as I was told.
- I will have to ride in the back seat of any car that has air bags for four weeks because if I was to get an air bag in the face it would not be a good thing. As Frank says, now I can be a real back seat driver (LOL). I also won't be able to drive for about 4 weeks.
- Everyone at Brigham & Women's Hospital is super friendly!

So it looks like everything is all set. I have a few more doctors appointments and then next week at this time it will be over and I'll be in ICU being pestered by nurses every hour or so.

Feelings and Thoughts

They say that you go through several stages when confronted with news of cancer, tumor, or other life-changing situation; shock, denial, anger, grief, acceptance, etc. I clearly remember the shock when at 8:30am the morning after having the MRI I received an unexpected phone call saying bluntly "There was a mass found on the MRI". I sat for a minute and then called my husband Frank and just told him bluntly, not considering the fact that he was at work operating some sort of heavy machinery. I then called my Mom at work and probably ruined the rest of her day. Next up was a call to my Dad and a good friend, Larry. I don't think that I was scared, I think I was in a state of disbelief....I feel fine how can I have a tumor in my head? Never in my wildest dreams did I think that this would happen to me.

After that first day I have tackled this from a research viewpoint. I have scoured the internet looking for websites, message boards, forums, etc that have information on meningiomas. Some of that research has paid off in that I am being seen by one of the most internationally respected Neurosurgeons at a top notch brain tumor center and it is only about 60 miles from my home. I have also met via the internet a number of people who have a similar tumor, have had the same Doctor or hospital, or are newly diagnosed. It makes me feel good to be able to pass along the info I have compiled to people who are also just starting this journey.

One week from today is the last full day I will spend at home since we will be heading up to Boston the day before my surgery. I can start to hear the days ticking down in my head. I know from my last surgery, which was scheduled 6 weeks before the actual operation, that the waiting is definately the hardest part. The day after tomorrow I will be at Brigham & Women's Hospital for pre-op testing and have been told to expect to be there for 4 to 6 hours. I'm sure after that point the reality that in slightly less the one week I will be undergoing a major surgery on my head will finally hit in. People have told me that I am handling this better then they would, that I'm amazing and an inspiration for posting a bit of the research I've found and not falling apart. I think they all underestimate themselves. In the past I've fought with depression and anxiety and never would have guessed that I would be so calm and assured. When I first heard the diagnosis I was very afraid that I might go "to the dark side". I have had two or three mini crying breakdowns but those have been brief and out of frustration (my dentist problem or the person who thought I was looking for sympathy). Mostly I am looking at this as a positive thing which I know may sound strange. I think a good portion of that has to do with the fact that I tend to be proactive in my health care and always try to find the best doctor that is available. I am so confident in Dr Black and actually all the doctors I have seen that I have only the slightest bit of apprehension. I'm trying to focus on the fact that this tumor was found by accident before it could do much damage or grow to the point that it can't be removed, thinking positive instead of asking "why me?". Asking why me leads to self pity which leads to depression and I'm trying hard not to go there, it is not a good place, especially since I totally plan to beat this thing so it doesn't come back! Instead I continue to focus on things like the fact that I like to wear hats and scarves so this gives me a reason to buy a few new ones...another positive thing :-)

More About Meningiomas

Here is a bit more about Meningiomas and brain tumors:

Between 1987 thru 2003 Dr Peter Black preformed over 1600 Brain tumor surgeries at Brigham & Women's Hospital.

Meningiomas are one of the more common primary brain tumors but are very underfunded. Because of this very little is known in regard to causes or cure. Very little research has been done on finding a drug therapy that could help since (and because) the first course of action is usually surgery. Nationwide, about 266,000 people are living with benign brain tumors, of which meningiomas are by far the most common. And the five-year survival rate after surgery for meningioma, do to recurrance or location, is lower than that for breast cancer and yet breast cancer is very well funded. Each year more of the population is diagnosed with a brain tumor, 27% will be meningiomas and yet there is a stigma to the term brain tumor or brain cancer. Sen. Arlen Specter of Pennsylvania underwent brain surgery in 1993 for a meningioma, and later had radiation treatment for a recurrence. Elizabeth Taylor underwent surgery for a meningioma also. "Why do public figures who have a meningioma/brain tumor stay so quiet?''

The following is from:
Brain Tumor Guide for the Newly Diagnosed
Version 2.5
Updated 4/19/2005
Copyright 2005 Musella Foundation
Virtualtrials.com

Every day, an estimated fifty adults will be diagnosed with a primary brain tumor (starting in the brain), and many more will be diagnosed with a cancer that has spread to the brain from someplace else in the body, such as the lung or breast. Additionally, thousands of parents annually will hear these devastating two words – brain tumor – in
regards to their child. There is no known cause of tumors starting in the brain and for many no known "cure." However, there are certainly ways of extending your life and improving the quality of that life.

Brain tumors are described by where they are located in the brain and what kind of cell they started from. Primary tumors begin in the brain, while Secondary tumors are caused by tumor (cancer) cells that spread to the brain from another "primary" source in the body, such as breast or lung cancer. Primary brain tumors are classified (diagnosed), in part, by the type of cell it originates from. For example; Astrocytomas come from astrocytes, oligodendrogliomas from oligodendrocytes, meningiomas from meningeal cells and medulloblastomas from medulloblasts, just to name a few.

When dealing with brain tumors, the word "benign" is a little misleading. It implies that the tumor is not dangerous. Unfortunately, the brain is enclosed in a rigid container (the skull) that allows no space for a tumor mass to grow. As a tumor (even a "benign" tumor) grows, it builds up the intracranial pressure and compresses everything around it – which
can lead to neurological problems and even death. Luckily, there has been a lot of progress in the treatment of the "benign" brain tumors. One type, the acoustic neuroma, used to be incurable and usually fatal. Now, it can be cured in over 95% of the patients, sometimes with a relatively simple radiation procedure.

Are brain tumors the same as brain cancer?
This is controversial. There are arguments for both sides: some argue that a brain tumor rarely spreads outside of the brain, so it isn’t "cancer". Others argue that it has the potential to grow and be deadly, so it is. I feel that brain tumors should be considered "Brain Cancer".

Neurosurgery
Surgery is performed to improve neurological function, confirm your diagnosis by means of a biopsy ("open biopsy" or "Stereotactic biopsy"), or to completely ("total resection") or partially ("sub-total resection" or "debulking") remove the tumor. With a resection, you also get a biopsy of the sample removed. You should ask your surgeon for a copy of the pathology report. You can easily (but it may be expensive – check first) get a second opinion on the reading of the pathology slides. There is a lot of interpretation put into the reading of the slides, and this is the single most important test you will ever have in your life, so it may be worth the money to double check it. For some benign tumors, surgery may be curative. For the malignant tumors, surgery may relieve symptoms of too much pressure in the brain and allow time for other treatments to work. Malignant tumors can grow so fast that without surgery, other treatments might not have the time to work. Surgery is also an opportunity to try a treatment that requires direct access to the brain. Surgery is performed by a neurosurgeon; however, a general neurosurgeon may not have adequate experience in the removal of brain tumors, and may be less informed regarding current treatment therapies. Most neurosurgeons do not see many brain tumors. You need to find one that specializes in brain tumors. Check out their website and make sure that "brain tumors" is listed as one of their main areas of expertise. An "expert" is defined as one who performs a minimum of twenty-five per year; typically these neurosurgeons are associated at some level with major brain tumor centers. Studies indicate that major brain tumor centers and/or surgical teams that perform fifty or more surgeries a year exhibit better survival rates and fewer complications. "Brain surgery" sounds like a very scary thing. It is. But as previously mentioned, it is now much safer and easier than ever. Advances in 3-d computer guided imaging, intraoperative imaging with ultrasound or MRI, and small endoscopes allow surgeons to remove many tumors that used to be considered inoperable. There are still some tumors that because of the size or location are too dangerous to remove, but the limits are shrinking every year. If you are told that your tumor is inoperable, get another opinion.

A Similar Surgery

I was sent a link to a website that describes a similar surgery to what I will have. This surgery is performed in Canada with a different Neurosurgeon. The tumor location is not the same as for me so once they open this person's skull the surgery is a bit different, but I've been told the tumor type and general opening, closing, and removal procedures are the same. Since a few people have asked what the surgery involved I am posting the link here:
http://www.eye.net/eye/issue/issue_02.24.00/news/tator.php

Starting To Get Ready

It dawned on my today that since I will be going to my Mom's house when I get out of hospital I will need to pack a bag for Frank to give to her. So I brought my suitcase downstairs along with a zippered LL Bean bag for the things I'll need while in the hospital. I started putting a couple of things together that I didn't want to forget, and before I knew it I had both the suitcase and bag packed and ready. I put them in the other room and have one less thing to worry about.

I had my hair cut a couple of days ago to make it easier to get the "crud" out that I hear they leave in your hair after surgery. Since I was told I couldn't wash my hair for 2 weeks (yuck!) I thought if it was shorter it may be easier to get the crud out. It also won't be hot around my neck. For the first time since I was about 4 or 5 years old my hair is above my shoulders and it seems strange. It doesn't look bad though and since they will be shaving a 1 to 1.5 inch along my hairline for the incision it looks better then it will (LOL). I also bought a few cotton hats and scarves to wear until the shaved spot grows back.

10 more days and I have so much more to do....

Home Alone

I've had a number of surgeries over the years and feel I have a fairly good idea of what my surgery and stay in the hospital will be like. I figured that while I would probably have a heck of a headache this wouldn't be as bad as being cut across the abdomen, through muscles, from hip to hip with a bunch of surgical staples as far as being able to get up and walk around. I knew I would get tired easily but thought that I would be able to make it to the kitchen or bathroom since our house is small and I won't have any stairs to worry about. My plan when I came home from the hospital was for my husband Frank to be home the first day and then he would need to go back to work. I would have someone come in the AM to let my dogs out, come back around noon to check on me and water or bring in the dogs (depending on weather), and then Frank would be home from work around 4 to 6pm. I'd stay on the daybed in the living room and have a cooler near the bed with snacks and drinks. My bathroom is about 20 steps away. This is what we did for my last surgery and it worked out fine.

I have since found out that this is not a good idea. I have been told by a number of people that I need someone with me 24/7 for at least the first week or two and preferably the first 4 weeks. As I considered how I was going to be able to have someone with me all the time (and how bored they would be while I slept) I realized that there was no one that I knew that could come here without being severely inconvenienced. I really didn't think it was a problem for me to be home alone for parts of the day but one person reminded me that I don't have any neighbors, the closest house being about 1/2 mile away through the woods. There is a slight chance of seizure, losing consciousness, or other need for emergency care, and I was also told that I would have dizziness and nausea when standing. So after a phone call to my Mom I will be going to her house (on Cape Cod, about 25 miles from my house) and my Grandma K will stay there to take care of me when my Mom goes to work. Mom is using up all her vacation days the week that I'll be in the hospital. I'll stay there a week or until I feel I can be on my own. On one hand I am grateful to have a nice place to stay and someone to take care of me, the other hand is a bit sad that I will be away from home for about 2 weeks. I'm going to miss being there, and especially Pumba (my Gordon Setter Bestfriend). I know she is going to be upset with me gone for that long. She gets anxious when I go to the store! I told Frank and my Mom that they have to drive me home before I go to her house when I get out of the hospital...I don't think that went over to well (lol).

Questions For The Doctor

I found this list of questions to ask your Doctor or Neurosurgeon on the meningiomamommas.org website and thought I would post them here with the answers to the questions that I received. It seemed to be an easy way for me to answer lots of people's questions and also have as a reference for others who may be dealing with the same diagnosis.

1. For peace of mind, please tell me about a meningioma in terms I can understand. This is all very overwhelming and if your neurosurgeon can calmly explain what you are dealing with, it makes the journey you're about to embark on a bit easier. You will see in previous posts, where I have posted info on meningiomas, that I received a number of pamphlets on the tumors and surgery from Dr Black's office.

2. What are the pros and cons of having the surgery or not having surgery? I had the option of "watch and wait", but that was not advised due to the difficulty of removing the tumor if it grows to much larger.

3. Are there alternatives to surgery--radiation, chemo, Cyber Knife, Gamma Knife? For me, because this tumor sits against the bone they recommend surgery and removal of the bones to get clear margins (leaving no cells behind).

4. Who would you recommend for a second opinion regarding my condition? Dr Black was recommended to me by both the members of the Braintmr list and also by my surgeon Dr Grove. I can't imagine there is a more skilled person for my tumor then Dr Black.

5. If I was your spouse or child, what would you do? I asked this question of Dr Grove and he would take it out if it was his wife.

6. What are the risks and/or side effects of surgery? Of course with any type of surgery there is a slight risk of death. There is also a slight risk of losing the sight in my left eye, partial paralysis to my left eyelid and double vision.

7. What types of residual problems may occur due to the surgery? Mostly cosmetic (scarring or left eyelid may droop) but those should rectify themselves in time. Slight chance of double vision or blindness in the left eye.

8. How many of this exact type of surgery have you performed? Can I talk to any of your other patients? Dr Black has performed over 1600 of these surgeries and I have been very fortunate to have spoken or emailed with a number of his patients. Each told me "there is none better".

9. What follow up medication/treatment will I need and for how long? Antibiotics and painkillers to start and anything else I will find out depending on how the surgery and pathology turn out. There is a chance of radiation treatment depending on the pathology report.

10. What are some of the emotional issues associated with my condition and treatment? There is a chance of depression and some patients are given anti-depressants.

11. Approximately how long will the surgery last? 4 to 6 hours from start to finish.

12. Expected length of ICU stay? 24 to 36 hours

13. Expected length of hospital stay? 4 to 6 days

14. Is an arteriogram or embolization needed, and why? I do not have the answer to this yet and will ask during my pre-op testing.

15. Will there be blood loss, and should I bank blood in advance in case of transfusion? I do not have the answer to this yet and will ask during my pre-op testing.

16. What do the surgeon and the nurse recommend to get the patient in the best condition pre-op? Daily multi-vitamin, eating a healthy diet, and 15 minutes of exercise or walking a day.

17. Where will the incision be and will my head be shaved? It will start on my hairline above my left eye and follow the hairline down to above my left ear and then to the outside corner of my eye. They will shave a 1 to 2 inch area down the hairline. It should be an interesting look LOL.

18. Before surgery, what medications can still be taken including vitamins or health supplements? Only Extra Strength Tylenol. No aspirin, Advil, Alleive, etc or other types of blood thinners. No extra vitamins other then a daily multivitamin.

20. After surgery, what are the warning signs for infection or complications as opposed to normal recovery symptoms? Red puffiness or oozing at the incision area, headaches.

21. Which doctor will I see for follow up? Is there more than one doctor involved? I do not have the answer to this yet and find out during my pre-op testing.

22. Clear instructions on how to look after wounds. If physical defects are involved, what is the plan of action? I will get these answers after the surgery.

23. This is a question for the anesthesiologist--can you prescribe anti-anxiety medication that may be taken prior to the surgery? I do not have the answer to this yet and find out during my pre-op testing.

24. What will you be replacing the dura with? (if you care about such details) The bones taken out will be replaced with a titanium plate and titanium mesh.

25. When can I color my hair again? (I know this is sounds vain, but this is one of the most commonly asked questions by our members.) Yes, after 4 weeks if all goes well.

26. Ask your NS what his/her travel plans are immediately following your surgery. Make SURE there he/she is not leaving on a two week vacation the day after your surgery. He/she will claim their partners are fully capable of following up, however, the partners are not invested in you as a patient and you are very likely to get blown off when complications arise. No worries for me, Dr Black will be just back from a 2 week cruise so he should be rested and refreshed :-)

27. Take the time to write out your complete medical history with dates(including hospitalizations, etc. and all the typical questions that every doctor needs to know). Include family medical history for parents/grandparents/siblings (i.e. heart disease, stroke, hypertension, etc.) Done

28. Bring the Doctor a list of medications you are presently taking. Should I continue with them? I don't take any medications at this time.

29. Will I have my own room? I didn't even think to ask, but as unbelievable as it sounds, I was given a roommate after surgery. You need your own room. Ask beforehand so it's one less worry for your family. I do not have the answer to this yet and find out during my pre-op testing.

30. Will there be any driving restrictions--especially important to know if you had seizures prior to surgery (and if you will be on AED's post-op) and if there are driving restrictions in your state. The efa.org is an EXCELLENT resource. Because I will have double vision for about 4 weeks, until the nerves and muscles behind my eye heal, I won't be allowed to drive until it clears up.

More About Dr Black and Surgery at B & W

I received this today from a person on the braintmr list and thought I'd post it here:

My mom had surgery for a GBM with Dr. Black last October, on a Sunday morning. He scheduled the surgery for 9 am so he could attend church first. I felt that was a very good sign--always good to have a doctor who calls on the man upstairs! Dr. Black's wife is an Episcopal priest and one of his daughters was my mom's intern. He is there all hours of the day and night, very dedicated and talented. One of my brother's buddies from college is an anaesthesiologist and did a rotation with Dr. Black-- he told us there's none better.

My mom was awake through the surgery and she felt she was in very good hands. The neuro ICU staff are wonderful. The regular neuro inpatient floor rooms are a bit crowded and can be noisy at night--you may want to bring a pair of earplugs.

A parking tip--the garage under his office is cheaper than the one across from the main entrance. In case you get the munches, the Au Bon Pain in the lobby is open 24 hours except late Saturday night (they clean it) and the cafeteria makes great french fries!

OK, so French Fries are a weakness of mine lol. Everything I hear about Dr Black sounds more and more amazing...I think I was right when I mentioned in a previous post that I don't think the man ever sleeps! I was also told that when Ringo Starr's daughter had a brain tumor and they had the resources to go to any Dr in the world they chose Dr Black to do her surgery :-)

The Power of Setter Zen

I have raised, shown and otherwise competed with my Gordon Setters under the Holly Hollow prefix for about 12 years. I also have a couple of English Setters and an Irish Setter. During the last 7 or 8 years I have belonged to Setters-L, an email list for Setter lovers, and several other Setter related lists and forums. When there is a dog or person in need of support or prayer the term Setter Zen is used on these lists. I had not told very many of my setter friends about this tumor but I needed to try to find some help in taking care of my house/kennel full of dogs so they don't hop or bop around me when I come home for surgery. If they were to even slightly bump the surgical area it will be very bad and I'm a bit nervous of how some of my younger dogs may behave if I'm lying in bed or moving slowly. So I sent an email to the Setters-L administrators explaining my dilemma and asking if they could help me find someone to possibly foster a dog or two for 2 to 4 weeks. One of the admins, Gail, saw through my request and realized that I also wanted to let everyone know, but was hesitant of posting to the list myself. It is like if I sent the email it makes it more real and a bit scary. She posted my email for me and another friend, Ginger K, thought to ask if she could post it to another Setters list that I belong to.

The outpouring of support has been wonderful and helps so that I don't feel so alone. I can feel the Setter Zen flowing from all over the country to me here in Mattapoisett. I have asked for Zen for my dogs in the past when we had an emergency or illness but felt a bit weird asking for it for myself. I have had offers of help, Zen, prayers, and support from friends, acquaintances, and Setter people I haven't met from all over the country and another good friend from Michigan called me as soon as he heard to say that he would do anything at all to help (Thanks so much David N!). We are still sorting through the offers and trying to decide what would be best.

Just wanted to say "Thanks!" to all my Setter friends for the wonderful Setters Zen. I know it helps and at the very least I don't feel so alone :-)