I'm cheating to start with by actually publishing what I wrote just under 3 weeks after the surgery. I actually broke all of this up and put it into a scrapbook page to record the events.
Within 2 weeks of writing this very positive discertation of the events, I was in the hospital 3 days straight seeming to have seizures. I believe that my positive outlook was honestly a pleasant side effect of the steroids that I had been taking for swelling. They are known to create a sense of euphoria. I wish that I was STILL taking them.
At any rate, sit back, relax and enjoy. :)
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This whole journey really started with the headaches… I finally called the doctor when I spent 2 months trying to remember the last day that I didn’t have a headache.
Occasionally I had migraines so bad that I ended up in bed for the day. I made an appointment to see my family doctor, and they did lots and lots of blood work and started the whole test running process.
I had a little trouble getting into the neurologist’s office, because he was a specialist, and they specialize in being busy. After some urging from the family doctor’s office, we got in to see Dr. Lang and he sent me for a CT scan was first, in November of 2001. That test came back normal, but that wasn’t good enough for him.
Dr. Lang sent me in for an MRI and scheduled a follow up appointment about a week after the scan. The first MRI was December 29, 2001. It was not necessarily a pleasant experience. I am a little claustrophobic to start with and the prospect of being shoved in a tube with my head locked down for a half hour or so was pretty scary to me, add to that the fact that I hate needles and mid-way through the test you get an injection. I mentioned my apprehension to the doctor and he prescribed a Valium, which I took when we checked in at Mount Carmel and seemed to take the edge off. The test itself was uneventful, kind of unnerving, but the medicine helped and the technician blasted some 99.7 The Blitz into headphones during the whole thing and checked on me periodically. They said that the doctor’s would get the results back in about 2 days. That was fine, but my appointment wasn’t for a week after to discuss the findings.
The office called me in early. One thing that I will remember the rest of my life is that they NEVER call you in early for GOOD news. Good news they give you over the phone. Bad news they make you come in for like getting called to the principal’s office. So, I had my appointment and the findings on the MRI were that there was an “abnormality” on the scan. No one really used the word tumor for a long time, because I really think that they had no idea what the heck they were even looking at. Even the MRI report itself says, “Abnormally increased signal.” That doesn’t sound very bad at all. But the findings were that herpes encephalitis or a tumor should be considered.
Dr. Lang was not very informative, he basically just said that they weren’t sure what the problem was but that there was definitely something wrong with the scan. He wanted to investigate further and sent me to a neurosurgeon and an infectious disease doctor to check out the encephalitis angle of things. The neurosurgeon just told me point blank that they should do another scan very soon and if there was any change that I would have to have a biopsy of the brain. Needless to say, he scared me to death, and I was in tears after the appointment. I saw the infectious disease doctor, who put me on medicine to treat herpes encephalitis and since that medicine did not “help” my headaches, they ruled that out as an option. The simple fact that I’ve never had or been treated for herpes ever in my life should have been a foregone conclusion, but I’m not the one with a medical degree.
We met back with Dr. Lang with whom we agreed it would be best to just continue to monitor the “abnormality” with periodic MRI scans and just wait for a change. The next scan was March 28, 2002. The results of that report were the same. Life continued as normal for the most part and just stopped a little before and after each scan until we got the news back. The next scan was a full year later, January 31, 2003. This report is the first one that mentions the size of the “abnormality” but none of this information was relayed to me until later. The doctor just basically said to keep having the scans and that things were “stable.”
Now we’ve just gone along from November of 2001 to January 2003 thinking that everything is great. I have a little spot, but no worries, nothing is changing and everything is just peachy keen. We have been trying during this whole process to have a baby, so this whole thing just basically added stress to our already stressful situation, but we managed.
In May of 2003, I found out that I was pregnant. We were jubilant, especially since it took us so long to get pregnant. Nothing in life could have been better. My pregnancy was uneventful, and we found out that we were having a boy. I couldn’t have an MRI while I was pregnant because it’s bad for the baby, so we just arranged to have one after I delivered. I guess that in life the brightest and the darkest moments are always close together.
Our bright moment was Nathaniel born (late) on January 21, 2004. I was induced but he was here and that was the most important thing in our lives. I was off 8 weeks with Nathaniel for maternity leave, and during that time I had to schedule my MRI and follow up with Dr. Lang.
The scan was February 23, 2004 and no more eventful than any of the others before it. I was nervous as always but Eric and I took the baby and we just hoped like always that everything would be okay. My appointment with Dr. Lang was scheduled for that Friday, February 27th. Eric’s parents watched the baby while I was there, and I went in happy go lucky like I have to every other appointment so far. I walked in the door and Dr. Lang dropped the bomb. He said that there was a change on the scan. He said that these changes are characteristic of tumors and “we have to take this to the next level.” I felt as though I’d been punched in the stomach. I tried to stay strong, but I started to cry. All I could think about was my husband and that little boy and this thing that was coming between the 3 of us and I just couldn’t keep my composure. Dr. Lang tried to be comforting, I think he put his hand on my shoulder and fumbled through trying to find some tissues. He basically referred me out to the neurosurgeon that I had seen before and sent me out of the office. I was in tears as I checked out and the office worker asked me if she could call someone for me, but Eric was at work and I didn’t want to bother him. I just wanted to get home and see my baby as fast as I could.
I drove out to Eric’s parents and in tears explained the situation to them. I grabbed the baby and I just couldn’t let him go. Through my tears, I saw his first “real” smile that day. I think that was the only thing that gave me any sort of peace. I called my mom (Cora) and told her everything, I said that I would have to make an appointment to see a neurosurgeon and she asked if I wanted her to come. I said sure. She said that she would be there Sunday night.
Ironic thing that happened was a visit from Ryan and Lisa. They were sitting here in our living room Saturday night and we explained the news from the doctor. Then Lisa proceeded to tell me that she had covered for her boss during HIS recovery from brain tumor removal and this excellent surgeon that he had. She gave me Mike Cooley’s name and phone number and asked me to call him. So, I chatted quite extensively with Mike that Sunday, we discussed things that only 2 brain tumor patients could talk about. He gave me some peace and some support, which was exactly what I needed at the time. He gave me information about his surgeon Dr. Maciunas. There were nothing but glowing things to say about the surgeon and his staff and his credentials and everything. The fact that he was in Cleveland and I would have to travel for treatment was not an issue. I took the doctor’s phone number from Mike and called Monday morning. They were able to get me in on Tuesday. Mom and Cindy went up with me to University Hospitals for the appointment. Eric was working and Nathaniel stayed with Eric’s Mom for the first time in many doctor’s appointments to follow.
We waited a very long time to see Dr. Maciunas, but he did not disappoint. He was very frank, but still had a sense of humor. He said that based on the scan and the unclear border of the abnormality, that this was characteristic of cancer. He said that there is no such thing as a benign brain tumor. “These things all have a tendency to “misbehave at some point or another.” That was his humorous way of telling you that it could kill you. So we took all of the information that he overloaded us with in stride, asked a very important question. The tumor is located on the right side of my brain, and because I am left handed, there was some concern with where certain brain functions are located. Medically speaking, people who are “left-handed” are usually “right-brained.” You can imagine the problem that this poses for surgery.
Dr. Maciunas explained to us the procedures that they go through to help them determine where my brain functions are located and set me up with even more tests to help them figure this out. These included a 4 hour block of IQ type testing called a neuropsych evaluation, something called a WADA test and a visit to the neuro-oncologist.
The neuro oncologist just confirmed what Dr. Maciunas said, and that was basically that we’d be doing all of the testing and then schedule for surgery if the test results were okay.
The neuropsych evaluation was a long, tiresome experience. I was basically grilled for 4 hours straight by a neuropsychologist. This was the point where I realized that the tumor was actually having an affect on me, and that was a very disheartening fact to face up to.
The WADA test is an angiogram where they map out your arteries from your groin up to your brain and administer sodium amobarbital to put your brain to sleep. This lets them simulate part of your brain being gone, like the surgery and helps them to determine if you will still be functional afterwards.
The WADA test was actually very interesting, the insertion of the tube that ran up the artery was a little painful, but after they got that part done, the fun began. They took pictures of the arteries and the brain with some dye and then gave me anesthesia. Then they asked me to do lots of silly things like read the names of items off of picture cards, read words, count, squeeze someone’s fingers and basically just a lot of nonsense.
They put the right side of my brain to sleep first and I was at 100%. I felt fine and I could do everything they asked. Even more importantly, after they were finished, I remembered everything they did.
We didn’t have as much luck when they put the right side to sleep. Fortunately I was aware enough to realize that the affects of the anesthesia were only temporary, or I may have reacted negatively. I felt a fog come over me as soon as they administered the anesthesia and I dropped my hands and basically couldn’t function. I could no longer speak. I could understand the doctor talking, and I knew the words to say, but I could not force them out.
After all of this testing, the results were favorable enough and surgery became an inevitability.
I was originally scheduled for April 26. We called Mom Covalucci and made plans for them to fly in for everything, and our plans were set. Then the doctor’s office called and wanted to reschedule -- for my 28th birthday of all days. I explained to Arlene, Dr. Maciunas’s assistant, that we already had flights arranged and she said that she would check back with the Dr. and let us know.
Dr. Maciunas would not budge on the date; he said that he only bumped us because he needed it.
We met with Dr. Maciunas one more time to go over the surgery and what was involved. He was very anxious to meet Eric and Nathaniel; he requested that they come at my prior visit.
He explained the risks of surgery. The risk percentage is 5% and that is everything that he could possibly think of. Serious risk is 2% and he continued to explain everything that they do to minimize those risks as well. He said that due to the nature of the surgery, he could not really tell us how I would be after the surgery and only said that I would be in the hospital for a week and I would be off work for 12 weeks. He explained that the tumor looks to be cancerous, but that there are many different types of tumors and that we would know more after the pathology is reported after the surgery.
I spend the next few weeks preparing. We went to Brandi’s old boss’s office and did power of attorney and wills. I got all of the bills ready, and enlisted any help that we could gather up. We cleaned the house from top to bottom and everything else that we could possibly think of. We spent lots of time with family and friends and I finished out work as long as I could just to keep some sense of normalcy.
Mom and Pop Covalucci flew in on Wednesday, May 5th. Thursday we drove up to Cleveland to prepare. I checked in for an MRI and as an added bonus, the girl shaved 7 spots in my head to line up the scan with the surgery. Fortunately, I had a hat. The hair situation would only get worse from there.
The vein situation was also not a good one, they had issues getting the contrast dye in, and that was a precursor of further problems as well. After the scan, we got checked into the hotel where the families would be staying for the week and got groceries to get everyone settled in.
Ryan and Lisa came in to say hi and we went to dinner with Mom and Pop. Dad, Mom and Brittani came in as well and we saw them after dinner.
To say that Thursday night was difficult is definitely an understatement, the weight of what was going to happen became very heavy on me. Surgery is a scary prospect for anyone, but just saying the words “brain surgery” seems to amplify the scariness many fold. I had a hard time getting to sleep but after some tears, sleep came and next thing we knew it was morning.
We checked into the hospital, and first thing, I had to have blood drawn. Fortunately that was short and painless. The hardest part was moving to the surgery floor and leaving everyone for the preop room. I was holding Nathaniel and after I put him down I just lost my composure. They normally make you go in alone, but the nurse allowed Eric to go with me. I changed my clothes and went to the waiting bed. They then attempted to start my IV’s for anesthesia and we saw several different doctors and nurses. There were MAJOR IV problems and it was even to the point where they were not sure if they’d be able to do the surgery. They have to start the first IV to get you under before they can put in the other 5 or 6 IV’s while you are asleep. But blessedly they eventually got the IV in and everyone stopped to see me one last time before surgery.
I remember nothing about the surgery itself except being wheeled into the room and having an oxygen mask put over my face. Surgery started at approximately 9:30 am that day and I barely remember being moved to the ICU. I just remember pain medicine, being hooked up to the catheter and family faces kind of fading in and out.
According to the family, I was moved into the ICU around 7 or 8 pm that night and everyone came in to see me there and then left for the evening. I was in the ICU until about 4 pm on Saturday. Then I was moved to a regular room.
I spent my first Mother’s Day with ALL of my mothers and my son.
The hospital staff was very understanding about letting me see Nathaniel, I saw him immediately before surgery and at all points during my hospital stay, even though they told me prior to surgery that he was not permitted in the ICU room. Seeing his face and the faces of the rest of my family really helped to keep my spirits up and I’m sure helped to speed my recovery.
As soon as possible, the catheter was removed and I was walking around. Eric would walk me around the floor and I walked a little more each day. The hardest part of the regular room was the constant IV’s of antibiotics that I had to take in order to be released from the hospital. My veins are very weak and it was hard to tolerate all of the blood and the fluid that they put in there.
Monday they cut the bandages off and the incision was definitely bigger than we had all expected.
The doctors come in each morning very early and check you, and for the last 2 or 3 days we heard that I was going to go home. Finally we got fed up and wouldn’t take no for an answer. Tuesday morning the nurse tried to give me MORE IV antibiotics and we told her that she needed to stop immediately because the doctor had released us. Next thing we knew we were going over discharge instructions with Rozanne, Dr. Maciunas’s nurse and we were on our way home.
The drive home was brutal, I was so glad to finally get here. And the first two nights spent in my own bed were probably the best medicine I’d ever received. Speaking of medicine, I have to take 4 different kinds of medicine, steroids, anti-convulsant, pain medicine and stomach medicine for side affects of all of the rest.
I have really felt miraculously good considering what I have been through. I can walk and talk and take a shower and go for a walk and take care of Nathaniel and more things than I ever thought I would be able to. The pain has been manageable and we have had such an outpouring of support and love and prayers from everyone we know and in some cases, people we don’t know! God Bless Us and our families and friends and church!!!
If you made it this far, I cannot believe I was able to put coherent thoughts together at that point. I honestly am reading this just like you would be, from the eyes of someone who didn't experience it. Most of my memories from this time are from my own journaling or the words/notes of family members.
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