Sorry I'm so delayed in sending out this update. It has been a crazy several days so there has not been much time for updating.
Tuesday, June 15, 2010
Tuesday, June 8, 2010
It was one year ago today that I had my first seizure. I remember things like it was yesterday. I didn't sleep well at all that night but rather I tossed and turned most of the night. My mind kept racing but nothing that I felt was all that abnormal. I got up as I normally did and got ready for work and hurried my son along since he was going to his great grandma's that day. I felt a little sick to my stomach and unexpectedly tired that morning but didn't think anything of it.
I noticed shortly after I reached my exit to the Interstate that I really did not feel right. I remember one instance where I felt like I blanked out for a second and I found myself in the third lane without remembering how I got there. No one was around and I assumed I was just tired and trailed off so I continued on, a bit more cautious.
It was several miles down the road, closer to Springfield than to home when I remember looking ahead and seeing a semi in front of me and making the conscious decision to get into the left lane to pass him. For some reason this was funny to me and I felt my mouth twitch into a smile. A second later I was staring at the roof of my car and I had no idea why. I could hear my son tapping me on the shoulder and calling "mom, mom" but I couldn't respond to him. I felt myself mentally fighting to get my head back facing the front when I heard the wheel hit something briefly. By the time I finally had both hand back on the wheel and my eyes looking ahead again, my son had us back on the road. I could tell he was scared and while I still wasn't 100% sure what had happened, I was pretty sure it was a seizure based on what I had heard about them.
Not daring to pull over on the interstate, I told my son to call his dad but to keep a close eye on me and grab the wheel if I started acting funny. He handed me the cell phone and I told John I was going to take the next exit but he better come get me. I actually missed that exit because it was one I was not familiar with and by the time I got close to it, it was by me. I was able to get us safely to the parking lot of a car dealer and parked. John was on his way and my son was with me.
I called grandma to tell her that he wouldn't be there and then called my mom because I knew she would probably call her to ask what was wrong with me. I remember telling her I think I had a seizure and I think I managed to tell her where I was before I again had the feeling something was funny and the smile came across me. I was standing outside the car and while I could feel my leg a bit unsteady and could hear her on the phone, I was unable to respond. Eventually my son got the phone and my seizure ended.
My mom and dad arrived and my mom called my doctor. While she was on the phone with the nurse, I had another seizure. I remember her making the comment to find something for me to bite on and I kept trying to shake my head no but couldn't. The nurse told her not to do that and to get me to the ER.
Shortly after this, John made it from work to me and he drove me to the hospital. I had another seizure in the car with him. I remember him gripping my hand when I had it. I was quickly admitted at the ER and they put an IV into me. John and I told what happened several times. While the doctor was in to check on me, I had what would be my last complex partial seizure. He had asked me a question and I went to answer him. I again got the feeling something was funny and the seizure began. I think this was one of the longest I had. He held my left hand and called my name several times. John held my right hand and talked to me. When it ended, they gave me a shot of Attivan, a fast acting medicine that will halt seizures.
I was extremely tired after getting this and curled up dozing while John sorted things out to get me dismissed. I would be starting on Keppra and the neurologist wanted me to have an EEG. John drove me to the office to get my EEG. Unlike the first EEG I had, I found it hard to stay awake for the test rather than finding it hard to sleep. After it was finished, we headed home.
Over the next two days, I would have several simple partial seizures that were simply a feeling of euphoria and twitching of my mouth. During these, I could communicate although not talk and could hear everything that went on. I never lost consciousness, my balance, or even my place in the conversation when it was over. Luckily, as quickly as they began they ended and I started my six months of not being allowed to drive.
I'm sure there are things that I have missed in my recount of what happened but I do know this... it is an experience I hope I never have to experience again. Seeing the one year mark come with no further seizures makes me very happy. :)
Monday, June 7, 2010
John has been steadily feeling better and having less pain as each day goes past. The bruising has been surprisingly minimal thus far and we were able to remove the waterproof bandage yesterday. We can't see the incision because of the strips that cover it but it appears to be in good shape and comes in between 1 and 2 inches in length. These strips will likely fall off on their own in the next few days.
Today, he has not had to take any ibuprophen for pain and his major complaint is that it is itching. This, of course, is a very good sign. I am guessing that if he didn't do manual labor for a living, he would indeed have been able to return to work today. However, I'm not sure why anyone would want to return to work after surgery if they were still not allowed to drive. Anyway, he is well on the path to recovery and I expect him to be good as new and ready to get back to a regular routine by the time we go see the doctor on Friday. He's moving around very well including minimal pain when bending and if it weren't for lack of motivation I do believe he would have mowed the lawn like he said. (Don't worry it's a riding mower... LOL)
Anyway, thank you everyone for your thoughts and prayers. I do believe the doctor will get a little bit of his credibility back in my eyes although I'm still mad about him not telling us about the driving thing and will likely ask him about it on Friday.
Friday, June 4, 2010
Let's face it, there are not many people that have not had cancer affect them in some way. Whether it is watching from the sidelines, caring for a friend or loved one, or fighting it ourselves we have all been touched by cancer in our lives.
Cancer doesn't care how old you are, the state of the economy, your race, religion, whether you have a job or not, have the money or insurance to pay for treatments, or the ability to take care of your family while you undergo treatment. It affects everyone equally and without prejudice. Isn't it time we start evening the odds a bit and put cancer in its place?
If you've followed my blog you'll have met a couple of the children whose lives were taken too soon by this demon. King Julian and Coleman have been an inspiration to me as I undertake my own journey. Should a 4 year old have to face this? The simple answer is no. However, there's so much yet to be done.
The American Cancer Society leads the battle against cancer at every level along the way. They tackle it at the root by investigating the causes of cancer and raising awareness on ways to prevent it. They give resources, information, and support to those that have been diagnosed with cancer. Furthermore, they grant research money to those that may be on the breakthrough of finally finding the cure for cancer. They can't do it alone. It takes the support from each and every one of us to help them reach these goals.
The Relay For Life is a magical event especially for those that have had to face cancer head on. Relay is a time to come together to remember those we have lost, celebrate the victories we have made, and pledge to fight back against the beast that has taken so much from us. Most importantly, it gives HOPE to all of those in attendance that there will be a cure found so that more generations do not have to face this dastardly disease.
As a Survivor, I really find it hard to put into words what it means to me. The very thought that all of the people on the track are there to support the cause that is very important to me is touching beyond words. Being on the track with others that have fought cancer is an inspiration and keeps hope in my heart that I can also fight and beat this thing. It helps me remember that I am not alone. Not only do I have the support of friends and family, I have the support of complete strangers who I may or may not ever really know. It doesn't matter because we are all connected and it's instant friendship.
Some have asked me in the past why I support the American Cancer Society and Relay For Life when there are many organizations out there that are specifically geared towards brain cancer. Really the answer is quite simple... if all of the friends and family that have/had cancer had brain cancer then I might consider putting all of my efforts into the ABTA (American Brain Tumor Association). However, I've lost family to breast, lung, brain, blood, throat, and various other types of cancer. I have friends and family fighting breast, brain, joint, and blood cancer. I do support the ABTA by participating in some of their fundraisers. I just hold the Relay For Life close to my heart and I can see the impact that it has on others. I support their mission and I am honored to be a supporter of the ACS and I know that the ACS has had a hand in many of the treatments friends and family have used to extend their lives or beat cancer.
So tell me, can you afford to donate to Relay For Life and support my team so that others traveling this path can be given HOPE? Can you donate in remembrance of someone you loved that was taken away too soon from this beast? What about in celebration of someone you love that has fought cancer and is here to show all that it can be done? Perhaps you just wish to donate to help FIGHT BACK against cancer so that future generations can say "When I was a little one, cancer took the lives of many good people but that doesn't happen anymore." Wouldn't that be great?
How about it, can you donate $5, $10, $20 dollars to help put an end to cancer and support those that do have it? http://main.acsevents.org/goto/Amy_Relay
Thank you for your support!
I realized after I sent the last post that I didn't give an update on John.
He slept fairly well last night considering the night after having surgery is normally very uncomfortable. He has found he is most comfortable sleeping on either side as long as if he is on his left side he has a pillow for his right leg to rest on so it doesn't lay down on the incision/sore area.
He has a waterproof bandage at the incision site so I can't really say what that looks like. He'll be able to have that removed on Sunday. I'm kind of interested to see how it looks.
He says his stomach muscles hurt the worst and in the area where the swelling was prior to surgery. However, he says most of the pain is muscular rather than from the incision. He has described it as the day after doing a ton of sit-ups when you are not used to them. We are guessing this is from them manipulating the muscles to bring them closer so the mesh could be sutured in. He has been moving around fairly well and walks almost normal so I see that as a good sign. He doesn't stay walking long, which is a good thing because he needs to let the area heal, but he is able to do so with more comfort than I think he originally expected.
He's been doing pretty good pain-wise. He decided not to fill the prescription for the pain med the doctor prescribed and has been doing very well with ibuprophen every six hours or so. Even then I think it's mostly to make sure the pain doesn't set in rather than really needing it. Hopefully, by Sunday he will be able to wean down to just a couple a day for managing. That would be ideal but we'll see. (It would renew my faith in the doctor a little if he is in that state by Sunday)
Overall, all is going well as long as he doesn't laugh or cough. That seems to be what gives him the most pain. His follow-up will be Friday and he's looking to start working again the following Monday.
I'll keep you posted as there are things to report.
Well, I didn't get into this part of the story last night because I was tired but I figure I'll talk a bit about it today. Now this is not the first time that we've been led astray by a doctor. We seem to attract them. However, one of the things that struck us square on the day before John's surgery was that this was NOT the procedure we initially wanted. There were some well placed words that made us believe it was but in hindsight it should have dawned on us.
We should have questioned him more when he said John shouldn't return to work for a week. However, I didn't because at first explanation he said that he could return to work in 2-3 days. It was only after John said what he does for a living and asked about climbing ladders that he said a week. This cleverly disguised the fact this was not the procedure we originally went searching for.
The second clue should have been when he described the particular mesh plug that he was going to use. In nothing did I read about the "shuttle cock" description it was always a spool type mesh. The difference being the "shuttle cock" gets sutured to the muscle, the spool has no sutures. Why this didn't pop up as a striking red flag at the time, I may never know.
Anyway, I guess you can't change what is done but the final blow that indeed we did not have the right procedure was when the doctor told him he was not to drive until after he came in for his follow-up in a week. Now this raises a curious question... why would he be able to return to work in 2-3 days if he can't drive for a week. I'd love to give the doctor the benefit of the doubt that because they found out when they got in there that it was larger than they originally believed and had been there longer than was believed that he was erring on the side of extra caution in telling us he can't drive for a week. However, I think we have been misled by enough doctors over the past few years that I don't know that I can believe that in any way, shape, or form. He'd have to do some darn good explanations to convince me this is what happened.
Anyway, even though it ended up not being what we originally intended, the recovery time is acceptable and the recurrence rate is in an acceptable range. While it's going to be a few days longer than we wanted and he's going to have a few more rough days than we wished, it will be a success in the end and a lot better than what the doctor locally had told us about the laproscopy procedure he does. Of course, I shouldn't be surprised considering he didn't pick up on the fact that it was indeed the hernia causing the swelling not swollen glands.
That, folks, is a rant for another day! Oh how I love doctors!!! *cough*
Thursday, June 3, 2010
Well, I think everything went pretty good for the hernia surgery and the drive home. John is laid back in his recliner with an ice bag and is watching TV. :) That's about like a male.
Wednesday, June 2, 2010
John is scheduled to have hernia surgery tomorrow Thursday, June 2, 2010 at 10:15 in Chicago. It should be a rather straightforward procedure and he should be in recovery by 11 AM or around there. We will be home sometime tomorrow night depending on when I get the nerve to attempt to drive home. Potentially, he would be allowed to go home at around noon but there is no way I am going to drive in Chicago over noon rush. Therefore, I hope the surgical center has a cafeteria nearby so he will get to have something to eat sooner than having to wait for me to get him somewhere we can stop for something.
Please keep John in your prayers for an uneventful surgery and a fast recovery and me in your prayers for the strength to keep my anxiety at bay both during his surgery and driving in Chicago.
Love ya all.