Wishing everyone a Happy and Safe New Year!
My family will be ringing in the new year with games around the table and a toast with some sparkling grape juice. Needless to say this means we will not be dancing in the New Year since the semi that parked on my chest still hasn't read the "no parking" sign. *sigh*
To a Healthy New Year for all!!!
Thursday, December 31, 2009
Wishing everyone a Happy and Safe New Year!
Thursday, December 24, 2009
Sunday, December 20, 2009
Now that we are nearly through December, I have realized that I didn't put a month in review for November. I do apologize for that. So, I guess I will do a months in review for December now and maybe you will be treated with an additional update at the end of the year. :)
- I am 18 months past the partial resection of my grade three brain tumor.
- It has been 14 months since I completed external beam radiation.
- It has been 6 months since my complex partial seizure and I am happily behind the wheel again!
- It has been 2 years and 4 months since my brain tumor was discovered accidentally.
On the positive side, I've been officially cleared to drive again!!! It's great to be back behind the wheel! It's been so nice to have my "freedom" back. It's probably a good thing too because this past week would have been nuts without it.
In the final medical portion of the update... I am fighting sinus issues and what is trying to become bronchitis. It's the typical yearly battle of my need to prepare for Christmas and my bodies need to fight being sick. It just wouldn't be Christmas without me hacking up a lung and unable to breathe!!! LOL
Emotionally - Mostly I've just been overwhelmed with things this past few months. Lots of things going on at work, getting ready for Christmas, and just day to day struggles has not made me a pretty sight but I've been able to keep relatively stable in the emotional front. Not sure if my boys would agree or not but I feel I've held up fairly well. The one major down I had was when it was looking like I might not get my license back when I was able because of some delays in paperwork but that worked out in the end and I'm in a much better mind thanks to it.
Mentally - I think at least some of my sharpness is beginning to return. I'm still having memory issues but I think those will never go away. Otherwise, some of my mental sharpness has returned although I fatigue a lot easier and I'm usually only able to focus on a task for about an hour before I have to remove myself from it to get my focus back. However, that is much better than the ten minutes or so I was at previously. I guess it's an improvement. :)
Physically - The sinus issues are zapping my energy and physically I feel like crap. Yesterday, I walked from one end of the house to the other and had to do my inhaler because it has my reactive airways aggravated. Luckily, harvest is nearing the end so John should be home more often really soon. This will help me A LOT! Of course, I'm not off until the 4th of January so that should help me recoup as well and hopefully start the new year with renewed energy. The plan is to work around the house and rest a lot so hopefully the efforts will pay off in the end. John will also be home with us after Christmas until the first of the year.
Work - On a good note, John has had a change in his employer sponsored health insurance and the plan will be really good for us when my plant closes down. It will be a lot less out of our pocket each year so if I do go the part-time route, I will have to work even less than originally anticipated. This, of course, is very good if I should have to go on temodar (chemo) if my MRI shows definite regrowth. It also means that I need to put less back in preparation for medical costs going into the new year. His plan will save us thousands of dollars in the long term.
My projects at work are doing fairly well so far. I had a very good kick-off meeting for the larger project that I was concerned about. I will be working with a very good group and they seemed to like some of my ideas and the spreadsheet I created for the project has been adopted by the entire project so it feels good that they trust my abilities enough to see that it was a near perfect fit for what we are doing.
Family - We are working on getting things ready for Christmas. We have the tree half way up (it's up but not decorated) and all the presents we've bought are wrapped except for my son's. I still have a bit of shopping to do but it shouldn't take that long to finish what I have.
Harvest is finally starting to slow down so it won't be long before I get my hubby back. :)
The good news is that he's almost finished the floor in my bathroom so maybe I'll have my bathroom back as well. LOL We've had to share my son's bathroom for the last month because of a leak in our toilet that turned into a mess so we decided to replace the bathroom floor for the second time. This time will be the final for a long time. It looks really nice so far and it's a much better setup than the cheap tiles we put in there last time. For those that don't know, the reason we had the cheap tiles in there in the first place is because our Master Bathroom had carpet in it. Carpet just doesn't work well in a bathroom! Therefore, we are now replacing the quick, cheap carpet replacement with a nicer and more permanent solution.
My son is still struggling with some things but I think he is finally starting to understand that school is important even if he doesn't realize it at the present. Hopefully this new found attitude will carry him through in the new year and his grades and attitude will improve.
Well, my sinus pressure is making my eyes water and difficult to think/see so I'm going to wrap this up a few categories short. I wish everyone and their families a very Merry Christmas and a Happy Holidays!!!
Friday, December 11, 2009
Well, I guess the frustrations that I expressed earlier went straight to God's ears! I have heard from the DMV and effective immediately, I am approved to drive again!!!
It feels like a HUGE weight has been lifted from me! I can't wait to get back behind the wheel. :D
This means that I WILL be at the Relay meeting on Monday and whomever is parking in my place at work... I'm back!!!
Thank you to everyone for your prayers and support through this long six months. I love you all!!!
The key word in that subject appears to be SHOULD. Today it has been six months since I had my last seizure and legally that means I should be able to legally drive again. However, it took a month for me to get paperwork filled out at my Neurologist's office and I suspect the DMV didn't get the paperwork until maybe Tuesday or Wednesday of this week. Therefore, if I do get notification today that I can drive again... I would be seriously shocked. Truth is, with the holidays and everyone at the State taking last minute vacations and the like, I will probably not get official word until mid-January. :(
I've attempted calling them to ask if I can drive until they give the final approval... no luck there. I've attempted emailing them to ask... again no reply. I guess I'm just doomed to waiting until I get the paperwork back from them giving me permission to drive again. I guess they just truly don't understand what kind of a hardship it puts on someone, that is already going through a lot, when they can not drive. It adds at least three times as much stress on me because nothing is easy. It's not like I purposely had a seizure to lose my license. It's not like I did something illegal. *Sigh* I guess this is just another lesson in patience.
I've been looking forward to today for the past three months and now it's not happening as I envisioned. It's a bit depressing. As if it hasn't been hard enough to fight that for the last two years now it's getting even harder.
God, grant me the patience to get through this stage and the strength to come out stronger for it. - Amen
Wednesday, December 9, 2009
I received this in a piece of email from a site I subscribe to called: gratefulness.org. I thought it was a very fitting message that describes my life over the past two years.
"Though you may not be able to change it, you can handle an ugly situation beautifully."
-Pir Vilayat Inayat Khan
Thursday, November 26, 2009
Looking at myself, sitting here today, I am thankful for so much in my life. I am thankful for each and every day that I spend enjoying life with my family and friends. This has been a tough year for my family but we have never failed at seeing what we are thankful for.
I am thankful for my husband, whom despite working a lot of very long, hard hours is able to try to keep up here at home as well. He has barely had a day off since I had my seizure in June and has had to be my chauffeur on numerous occasions instead of resting when he is off. He rarely complains about it and does what he can. I always knew that he was my Knight in Shining Armor but he has proven that this year.
Then you have my little savior, my son. Although he's not very little anymore. He is now credited with possibly saving my life not once, but twice. He is one of the most kind, considerate, and compassionate young men I have ever met. While he does get into trouble, is a typical teen, and struggles with school; he is always there for me and the family when it is needed most. I truly wish I could be half the mom he truly deserves for no child should have to take care of their mom but it should be the other way around. I am very thankful for him!
As I said, this year has been very trying for us and I could not write a post of thanks without thanking all of those that have assisted us in this journey. For everyone that gave my son or I rides, offered a helping hand, or just was there to talk... We are so thankful for you. My parents have been a huge help getting me to and from work on a daily basis and I am grateful they live close enough to help. My co-workers Robyn and Scott have never hesitated to give me a ride to doctor's appointments when needed, it would have been a nightmare without you. My little brother sometimes even came to spend the night at my house to give me rides when needed. I appreciate that so much. Then you have all the friends like Jamie who would fill in when it was needed. This year would have been horrendous without all of you and I am so thankful for each and every one of you!
I am thankful for all of my friends in real life and online. All of those that have just the right words to say when I'm feeling down or who just know when I need to talk. You lift my spirits when I am ready to cave and you make me laugh when it is most needed. You help me get away when I need a break from reality or give me a new way of looking at things. You guys are my angels and you know who you are.
I am thankful for finally finding a set of doctors that I can trust and communicate with. I finally feel like I'm in all the right hands and that I'm not going to be left out in the dust. Without them, I would have very little hope of a future, but thankfully they are with me now and part of my team.
Lastly, I am thankful for being able to spend time with my family, in a home that I own, with enough money to take care of my needs and even some of my wants, and, of course, to be happy, loved, and able to enjoy the fun things in life even if it does leave me tired. I am thankful for the life I am living and I hope there are many more years to come!
OOPS, of course, I am thankful for all of you my wonderful readers!!!
Tuesday, November 24, 2009
Something I am struggling with right now at this very moment is keeping on track. There's several factors affecting it but I know that the mass majority of it is the pure and simple change and fatigue my brain is currently under.
I have found that I have to make lists, not just normal lists of "do the laundry", "cook supper", etc. But detailed lists like, "get the clothes from the bedroom", "sort laundry", "put laundry in the wash", etc. It's frustrating but it's easier than backtracking a dozen times just to get through the process of starting a load of laundry. I do not process sequences well anymore and when I'm tired it is even worse.
I am also fighting motivation issues. Despite having all of these things listed out, I have to fight myself to do just one piece of them. When I do get motivated, I find that I tire easily and that I'm exhausted for days afterwards. This is what I am currently suffering from. I had a really good day on Sunday and I got a lot of things done, however, this week I've been near dead at work. I've barely kept my eyes open and by the time I get home, all I want to do is sleep. Luckily, this is my last day of work this week and I'll get to stay home and rest tomorrow.
When you have to keep track of everything from work, to home, to your son's school, to medical bills, to things that need done... it's hard on anyone but it's near impossible when you are also fighting a healing and aching brain.
Monday, November 23, 2009
In talking with one of my online support groups recently, a very important topic in the brain tumor/cancer community came up. Perhaps one of the hardest things we as patients have to deal with is helping others understand our day-to-day struggles. After the surgery is done, the hair grows back, and the visible signs of the tumor are gone those around us can often forget that there is anything wrong with us. They don't see the cycle of worry, fatigue, cognitive difficulties, anxiety, depression, and sorrow that we live with on a daily basis.
The brain is a very sensitive organ and when it is affected, it affects every part of your entire body. While we might look normal on the outside and maybe even act normal at times, on the inside we are often facing many things we don't quite understand or know how to deal with. Tasks that once came so easily to us, we now have to struggle to do. We worry about what the next scan will show and that each new "tremor" or change in ourselves can be the beast returning. While we try not to focus on statistics, we are aware of them and that there is no known cure just lots of hopeful ideas. Everything we do is a struggle and when we have our good days we often pay for them with days of fatigue because our bodies and brains no longer recover as they once did. I often find that I either have a good "brain" day or a good "physical" day but rarely do I get both in the same day. Doing everyday tasks like balancing the checkbook and paying bills can be the mental equivalent to running a marathon without first training for it.
Finally, while many of us know that we have to accept a "new normal" when we enter surgery, radiation, chemo, etc... just as you grieve for a lost loved one, we sometimes grieve for the piece of ourself that we have lost. Along with this comes depression, anxiety, and frustration. While we all know that life is never the same after a brain tumor diagnosis, it isn't always something that we want to accept but we have no choice. While some types of cancer or even illnesses can be cured or handled by medication or surgery, these are only temporary solutions in brain cancer. I've heard it said many times with other cancers, "Give me a year of your life and you can go on with the rest of your life," this isn't so with us.
Some of the people close to me would say, "but you are always upbeat and you never show any of this." Yes, you are right. I am perhaps a master of wearing a mask over my emotions. I find it easier to hide my feelings and struggles and discuss the superficial things in my life that I do to show my emotions and talk about what is really going on. It's easy to get caught up in the web of "no one can understand unless they've walked in my shoes." I'm hoping that with the change of my blog, this is something I can slowly help change.
Perhaps the hardest thing to openly deal with is the knowledge that there is no cure. Once diagnosed, we have constant reminders of this for the rest of our lives. It will perhaps never go away entirely. It's hard when we attempt to deal with the issues we know need to be dealt with. The things that everyone should deal with at some point in time to make things easier on their family when their day comes. However, when someone in the younger years aims to do the same thing, we don't always get a lot of support. We hear "death is inevitable and it can happen to anyone at any time." Isn't that all the more reason to start thinking about arrangements when you are younger because... you never know? One thing that must always be remembered... While everyone will die some day and no one knows when that time will come, those dealing with brain cancer not only knows this but they also know their days are numbered and no one has bothered to tell them the number.
Sunday, November 22, 2009
After having some discussions in one of my support groups recently, I realized something about how my blog has changed from its original intention. My goal was to give the uncensored journey of dealing with a brain tumor in order to keep family and friends up-to-date, give valuable information and insight to those who must also take this journey, and to help others understand just what really happens along the way. Of course, the goal of all bloggers is to have people read their blog.
Ironically enough, my blog started doing these things and that's when a process that I didn't even realize took place. My nature is to protect those I care about from harm and unpleasant situations. As more people began reading my blog, I started thinking more about what they are reading and unconsciously began protecting my blog and not saying everything that really should be said. I even found myself at one point, creating a private blog on another site to get the bitter truth off my chest without taking any chances of someone reading it and suddenly growing severely concerned. In other words, I began blogging about the things you WANTED to know and not the things you NEEDED to know.
I am not going to vow to write every feeling I have, I don't have time for that. Nor am I going to even promise to write daily. However, I do promise that I will begin writing the full story and not pulling any punches along the way. Therefore, if you can not handle reading about my break-downs, issues, and the cold hard facts... I've enjoyed having you as a reader but I ask you to not read my blog in the future. Brain cancer is not an easy journey and often things are happening that only the survivor and their closest caregivers know about. Sometimes not even the caregiver knows what is going on. Therefore, I will begin my effort to start vocalizing these things that so few ever really understand unless they themselves are going through it.
So finally, I shall close the inadequate chapter of my blog and open a new one. I hope my Readers follow along with me on this journey.
"We must never forget that the highest appreciation is not to utter words, but to live by them." - John Fitzgerald Kennedy
Friday, November 13, 2009
So I'm running behind again. I have no excuse other than I have been VERY busy and it's taken me 5 days to write this update. (I've had to change the numbers three separate times!!!)
- I am 16 months past the partial resection of my malignant brain tumor
- It has been 13 months since I completed external beam radiation
- It has been nearly 5 months since my first complex partial seizure and 28 days until I can drive again. YAY!!!!
- It has been 2 years and 2.5 months since my brain tumor was discovered
The Neurologists that I talked with were great. I really liked their philosophies, the fact they never hesitated to answer my questions, and that they actually agreed with me on some of my views about certain things. They agreed that I made the right decision to decline Temodar after surgery as well as that my last NeuroSurgeon really should have answered the questions that I asked. They were common questions actually of "very informed" patients and they were not unreasonable. They actually seemed quite concerned that he didn't answer these questions and I could tell they were making mental notes of this for future reference. (Questions that we referred to were, "Where was the cranial plate removed?" and "What percentage of the tumor was Grade Three?")
Anyway, in the end, I felt very comfortable with them and they collectively agreed that we were still in the 6 months - 2 year window where the most post-radiation change occurs and that there was not enough change to warrant starting me on any additional treatments as of yet. We all agreed we would schedule an 8 week MRI and we also discussed possibilities that would be available to us should there be concern in any of the upcoming MRIs, including working with my Neurologist back home to line up the correct team should further treatment be required.
While I was not as impressed with the NeuroSurgeon, he was straightforward, honest, and to the point so I couldn't have asked for anything more. He is better than all my previous NeuroSurgeons, except for the one I had originally chose to do my surgery, but then again, I'm not sure there is anyone that is as effective at communicating as he was. He gave us additional thoughts to ponder about my options for treatment should it be needed but he also was in agreement that there was not enough there at the moment to require action right now.
I did finally get a reply from my first NeuroSurgeons office but I am still waiting to receive the corrected documents so that I can send the information to my insurance for claims processing. Hopefully, before the end of the year, we can finally put this issue to rest. My Psychiatrist's office is still working on getting the claims properly submitted for my medication as well. We did, what is hopefully the last, submission of the claims to insurance this past week. "Behavioral issues resulting in trauma to the frontal lobes region of the brain." (or something like that)
And finally, I had a visit with my Radiation Oncologist yesterday and I have been OFFICIALLY RELEASED from his care!!!!! That means one less doctor I need to keep updated with. This is good news and truly shows the progress I've made.
I think that finally wraps up how things went in the medical arena for October.
Emotionally - It's been a roller coaster this past month. Not only was I dealing with the unknown questions about my tumor but now I'm trying to sort things out to deal with the upcoming shutdown of the plant I work at. Not been a good month but for the most part I've managed to keep relatively stable.
Mentally - Honestly, as crazy as things have been, I haven't been paying much attention to my mental functions other than I know it doesn't take much stimulation to exhaust me.
Physically - I think exhausted is the best word. I've been (successfully so far) fighting off bronchitis and sinus issues, an increase in the number of headaches, and some cases of insomnia of late. None of the three go together well when you are also more or less a "single" parent, dealing with several projects at work, trying to make decisions that affect you and your family's whole future, and just basically swamped with things you need to get done at home. Since John has been working the major hours (He has been putting in 30-50 hours of OVERTIME in each two week paycheck) the house has pretty much fallen apart. I get home an hour later than I did when I could drive so that by the time you get home, relax for a few minutes, eat supper, do dishes, throw in a load of laundry, and take a shower... it's way past bedtime. Soon enough we'll get back into our old routine again. I can't wait to get the ok to drive again. It's been a long 6 months. However, we are almost through it and there is no way I could have done it without my parents and the help of many friends. Mom, Dad, Andy, Robyn, Scott, Jamie, Michelle, Hillary, and everyone else who has given us rides where we have needed to be... THANK YOU!!!
Work - This earns its own topic category this month. Just before I went to Mayo, it was announced that my parent company is going to shut down our plant and move the product to Mexico. We do not have a definite time-line yet but there are several that have said that June-August is the estimated time-frame. I'm really not too worried about it. I have several options open to me and it's really going to be a matter of weighing which option is the best for me. There are both full-time and part-time options in my future and they both have their pros and cons. The good news is that John and I can live off of his salary if needed with the exception of what it would cost to have me added to his medical insurance. Therefore, I know that I just need to make enough money to cover the "fun extras" and my medical costs. I can't recalculate those numbers until his plan information is available in a few weeks but I think it can be met pretty easily if I can find either seasonal or part-time work. Might even be able to make it with money I can make with my own "business" by working on computers for people. I'd have to look into the headache that would be first. I will keep this issue posted after I know more but for now, I'm not too concerned with it. We have a solid savings and have already begun cutting back so regardless of what I choose, we will be ready.
Along with the site closing has come many new opportunities for me at work. For the first time in my career I have started "officially" leading a project. One of the projects is within my group of teammates and the other is at a higher level where it will be visible by a lot of people that are pretty high up in the company. I won't deny that I'm scared as hell about the higher level project. I'm not as confident in my abilities to lead projects as I might have once been. I can't deny that there is enough change in my mental capabilities that I'm not sure I'm fully capable. However, I don't back down from challenges and I'm not going to start now! I look forward to the challenge and I hope I'm both physically and mentally able to handle the projects. I figure, if nothing else, it will look good on the resume.
Family - John continues to work the crazy long hours. He's exhausted every night when he gets home and usually I see him long enough to direct him to where supper is and kiss him good night. Luckily, the weather has been decent for the last several days so the farmers are finally making some good progress in the fields. I'm hoping it will stay good long enough that they will be done before the Christmas holidays and therefore John will have no trouble taking his week off between Christmas and New Years like we always do.
My son is still struggling with attitude AND school. He's doing decent in the actual academics if he can just keep himself out of trouble. He's managed to get himself another day of "0" this quarter. I would have thought he would have learned last quarter when what should have been B's and C's ended up being D's. I know this summer/fall has been as hard on him as it has been on the rest of us and I really want to believe that is part of it. Hopefully, when we get back to a normal routine, he will start getting back to a little more normal.
Play - Haven't been doing a whole lot of play although I'll take this opportunity to talk a bit about our trip to Mayo and some of the things we did while there. I have to give them credit, they have made the area a really nice place for patients and their caregivers to be should the need arise. The buildings are beautiful, very well designed and thought out. Beautiful architecture, history around every corner, and really had more of a feeling of home than I ever dreamed a hospital/doctor's office could have. We enjoyed our time there even if it did rain most of it and yes we did have a bit of time for site-seeing. That Thursday night we decided to celebrate that they didn't feel there was any concern of yet and we ate at a fabulous restaurant not far from our hotel. It was definitely ritzier than anything I've ever been to but hey, we were celebrating! We had a great meal with fabulous staff and it really just made me feel wonderful. It was our splurge and after the 7.5 hour drive to get there, I think it was very deserved.
Oh, and we were able to enjoy a good ole A&W restaurant as well on the way home! It appears there are a lot more of them up that way than there are down here. I haven't been to one in ages. Nothing beats a good ole diet A&W and burger!
That's really all of the serious "play" we've been able to do. We didn't really get to do anything for Halloween since harvest was so crazy and I couldn't drive. I told John we'll have to make it up next year. JJ and I will do it without him if he's too busy! I haven't been to a good haunted house in some time so I'm WAY overdue and I've never made it to the Haunted Hayride so that's definitely on the list for next year even if there is a three hour wait!
We have missed the last few dances as well. Unfortunately, when John doesn't get home until 10 minutes before the dance is supposed to start, it makes it difficult to attend. There's a dance this weekend if he gets off in time but I'm not going to get my hopes up even if I'd love to be at this one because we've never danced to this Caller before.
Relay - Yes, the Relay season has started anew! I'm super excited about it now that I actually know what I am doing. I had the privilege of attending the Relay Academy this year and I've got tons of things floating through my mind about it. (More behind the scenes stuff than actual team stuff although some of that too.) I'm determined to have a full 15 person team this year! So, if anyone would like to join me, do let me know. You all know if you are in my area or not. ;)
Also at Academy, I was able to give my first "public speaking" presentation. I was asked to tell my story at the Survivor portion of the Academy. I loved doing it and I really hope that I'll have many more opportunities to speak. As you all know, I love to talk so it really comes naturally to me. I have already been asked to speak at one of the local Relays that I attended last year and I'm really excited about that. Now I have 9 months to think about it before I get to give it!!! I need to talk with them about what angle the want me to take though. Honestly, this is something I've thought about doing as a "side-profession". What more can you ask for than to spread the word about brain tumors/cancer, Relay For Life, the Fight of a Survivor, and just plain motivational speaking? It's something I would love to do so if you need someone to speak at something and you are looking at anything down one of these paths, let me know. I might just be available. :)
I will be putting up donation banners when I get it all sorted out so be on the lookout!
Don't ever say "I can't" always say "I will"!!!
Love ya all and many huggles!!!
Thursday, October 29, 2009
Well, we arrived safely at Mayo and saw the Neurologist. I LOVE HIM!!! He was very upfront with us, answered every question we had, and has a lot of the same philosophy as John and I. I think all the turmoil with the previous ones was so that we could finally find someone we are completely comfortable with.
Ok, ok... so what did they say? Well, there was definitely change in the June MRI and there is a good possibility of it in the October MRI. However, we are still in the 6 - 18 month window that changes occur post radiation and any changes are not significant at this time. So, we will have another MRI in Springfield at the 8 week mark and we will continue working with the doctors at Mayo to determine the best path of treatment. Should any of the future MRIs show change, I will most likely be starting Temodar but he doesn't feel it is to my benefit to start it at this time.
For those that have no idea what I'm talking about, they do not believe it is anything to be concerned about at this time and therefore we will continue to watch it. This is good news!!!
Love ya all and huggles from Minnesota!
-- Amy (Now it's off to find some food)
Tuesday, October 27, 2009
Today they announced at work that they will be closing the plant I work at sometime in the next year. I would be lying if I said I was surprised. We have all felt for some time that our jobs were already on borrowed time. After they announced the closure of our sister plant earlier in the year, we were even more certain it was just a matter of time for us as well.
We don't have a time frame nor do I know what this means for me. Things can go in several different ways and we'll just have to wait and see. In the meantime, I am preparing what is needed to ensure that my family is in good position regardless of what happens with my job. We are fortunate in that we can live off of John's salary and it would just be my medical expenses that would cause issue.
We'll have to wait and see what path we must go on. From what I am gathering from those making the decisions, God is truly the only one that knows what will take place at this time. We are strictly along for the ride until which time the pieces fall together. As I said, I know that we will come out stronger in the end and that we will come out on top just as we always have. Everything happens for a reason.
Monday, October 19, 2009
Here's the latest from the brain front...
October 8th I had my three month follow-up MRI. My Neurologist gave me the results saying that he didn't feel qualified to diagnose what he was seeing and therefore wanted me to see my NeuroSurgeon. Of course, my NeuroSurgeon was formally fired back in January after the fiasco that occurred following my first post-radiation MRI. I began researching NeuroSurgeons in the area after I had my seizure in June. I had a few likely candidates should I need them so I was able to move fairly quickly in finding a new NeuroSurgeon and I have a backup should it be required. Although I hope that I will strike it with this one. Mayo Clinic is rated number 1 in Neuro in the USA so I think I should be in pretty good hands.
I will be seeing a Neurologist and NeuroSurgeon at Mayo in Rochester, MN on the 29th and 30th of October to get their opinions on what the last couple of MRIs have shown. If you remember my July MRI showed an area of enhancement that they were uncertain about. My suspicion is that it's this area that is concerning them and thus why they wish me to seek a more experienced opinion on it. This is one of the many things I like about my Neurologist and thus why I have not allowed his nurse to run me away from him. He knows when he's in over his head and you have to respect a doctor like that.
It will be a long drive at around 7-7.5 hours but I think it will be well worth it. After we find out what is going on, Mayo is known for working well with doctors in the patient's area so hopefully it will not be one of those treks we have to make often. Even if it is, to put a group you can trust running the game makes it worth it.
I guess this isn't really giving much in the way of information but I'll know more when I get the MRI report and after I see them at Mayo at the end of the month. For now, we just have to know that it is in our Father's hands and that there are a lot more options still out there should they be needed.
Posted by DreamCatcher at 4:55 PM
Monday, October 5, 2009
Today, John and I celebrate 13 years of marital bliss. It has been a wonderful 13 years and I hope we have many more to come.
So much has changed and happened in those 13 years but I would never trade a day of it for the world. True love is hard to come by and I'm glad I was blessed with it.
John - I love you now and always. *Kisses*
Thursday, October 1, 2009
Ten years ago today, I became officially employed at my current place of employment under a small company known as Hobbs Corporation. I have seen a lot in those ten years here. The walls have changed a few times. My original office is now a row of cubicles and the area of our IT lab used to be Quality. I have seen three corporate employers including the latest where we also lost our Hobbs name. I have seen our company go from 204 users on a Novell network to 55 users on a corporate run Microsoft domain. I have seen co-workers and friends come and go. I have seen a good company fight its way along a sometimes difficult path. Most importantly, I have made friends here that have meant more to me in the last two years than anyone will every know. It's been quite the journey since I started here. May there be many years yet in this site.
One year ago today, I went to the hospital to take my last radiation treatment. I was excited but exhausted at the same time. It marked the end of phase two of my treatment for what turned out to be a cancerous brain tumor. Now a year after the end of it, I am still fighting the cancer and even some of the effects of that treatment. The key word is I'm fighting it. :)
On Monday, it will be 13 years since my husband and I walked down the aisle. It really doesn't seem possible that it's been 13 years. I guess it's true that time flies when you are having fun. We've been through so much together and I love him more with each passing day. How could I not when we have been through the struggles we have? This should be my lucky year. 13 is my lucky number so we'll see. We have come a long way from the two kids that we were when we were first married, living on his meager paycheck while I completed school. We have bucked the odds in so many ways as we stand united after 13 years. We are happy, have a healthy son, own our own home, and would never dream of it being any other way. Sure, we'd love to win a huge sum of money so we could enjoy the benefits of our hard work but we also realize that having each other is just as important. 13 years... wow.
Thursday, September 24, 2009
I have been a bad blogger this month...
- I am 15 months past the partial resection of my malignant brain tumor
- It has been 12 months since I completed external beam radiation
- It has been 3 months since my first complex partial seizure and 78 days until I can drive again.
- It has been over 2 years since my brain tumor was discovered
I still have not gotten with my first NeuroSurgeon on the insurance issue. I really need to just bite the bullet and call them. *Sigh*
The Psychiatrist's office is working on getting my diagnosis changed to a medical diagnosis. Hopefully they have that sorted out in the next few weeks.
I can't really think of anything else other than just being really tired over the last few weeks. He said that's common with the meds so hopefully it will improve as my body adjusts to them more.
Emotionally - This has been a better few weeks emotionally. The anxiety has eased and other than dealing with issues related to my son and his behavior, other areas have been doing pretty well. I have found I'm a lot more on edge emotionally but I think it's just because of being tired all the time and just overall stress. Maybe if I finally get the NS called to sort out the insurance stuff, I can work on reducing the stress level I have right now.
Mentally - I am hoping at least for now that things have stablilized a bit in my mental functions breakdown. I haven't noticed anything new and I have actually been able to work over the past few weeks on some of the things that were declining. If this thing wants to take away my mental advantage, it is going to have to work harder than that! I seem to have noticed an improvement when I went off my second medication. The neurologist said the "decline" was likely from the medication so maybe he is right and it wasn't just that I was on the meds but the combination of the two causing it. I can only hope!!!
Physically - I have seen a HUGE improvement with the headaches and have not had to take ibuprophen in over two weeks. Honestly, I'm not taking the Tylenol anymore either but I am on some cold medicine with acetaminophen in it to combat my allergies/sinus that is trying to break over the edge and act up. I think I could probably go off the Tylenol entirely at this point but I will do it gradually after I go off the cold meds.
Really, physically, my biggest complaint is the tiredness. I'm sure I'm just overdoing it. We are busy at work and with John working longer hours, I have to try to do more including handle our son's attitude spells and "not wanting to do homework". Honestly, trying to convince him to do what he HAS to do is harder on me than physical work. It takes half as much mental work to wear me out as it does physical. I think that's just a part of my new normal I need to get used to. Of course, you hit the "during the week 9.5 hours of sleep isn't enough yet on the weekend I'm wide awake after 8" syndrome. I find it extremely hard to sleep in on the weekend and typically only manage 8 hours and if I'm lucky 9. Yet I will be exhausted on weekdays. I know this is just a fact of life but it's still annoying. LOL
Work/Family/Play - Work has been... busy. We are working on several different projects and I've got the constant "computer refreshes" as well. It's going rather smoothly even if I don't always get as much as I hope done each day. Some days I just struggle to find that little bit of energy to do what needs done. It seems either I have a productive morning and "can't do anything" afternoon or the other way around. I can't seem to put both morning and afternoon into the same day. Again, it's probably just a limitation on my energy levels. I try to spread it out and do physical type things during one half of the day and mental the second half but even then I tend to feel the slump. I am making progress and I am getting things done so I guess that's the important part!
John has been working major hours. We barely see him at night. He gets home about an hour and a half before I go to bed so it doesn't leave us very much time. He's also going to work earlier and working long Saturdays. Last night he didn't get home until 8 PM after starting work at 7 AM. Don't get me wrong, the paycheck will be nice but I do hate the long days.
On top of John working longer hours there was the murder of an entire family not far from where I live. I didn't know the people who were killed but I do have a friend and her family that lives in the same town. The police are giving us very little information at this point so you can't help but look over your shoulder and double-check your windows and doors when you are home. I hate being home alone with just my son and I.
Speaking of my son, he is more and more into the attitude each day. I think I should have not bragged about him doing well in school. He decided to pull a really stupid move around Labor Day and now he is seeing the penalties of it. He is barely passing all of his classes now due to the "0"s he received and he is finding out what it was like to live before TV and video games.
As for play, we haven't been doing a whole lot of it recently because with John in busy season there really isn't time. We did break down recently and take off just the two of us and went to the Riverboat not far from us. We had a good 4-5 hours, came home just $40 poorer (I lost, John won), but had a blast and it was nice and relaxing. We had fun and both agreed we need to do it more.
I think that is just about all for now. I'm not even going to put that I will try to send more updates because that is a certain way of jinxing myself!
One year ago, this is what I was left with after completing radiation (ignore the markings on my head, this is from Halloween last year. I realized that these are really the only good pictures of my bald head that I have...):
This is the proof that I have a huge bald spot still... even if I'm much better at hiding it now:
When I have a good hair day I can hide it quite well, although the 30 minutes it takes to get this really sucks when you are used to it taking about 5 minutes:
And the answer to the question I am asked the most... Did you perm your hair or is that what treatment did?
Nope, it has always been naturally curly thus why I always had long hair to pull out all of the curl!!! :D
I think it's made some pretty good progress overall. Now to just get that large bald area to get some hair that isn't as light and hopefully encourage it to thicken some. (Or the other side to hurry up and start to straighten so I can do a comb-over!!!)
Wednesday, September 2, 2009
Ok, so it's late... Does it count that I started it in August?
- I am 14 months past the partial resection of my malignant brain tumor
- It has been 11 months since I completed external beam radiation
- It has been almost 3 months since my first complex partial seizure and almost 3 months until I can drive again.
- It has been 2 years since my brain tumor was discovered
I see my Neurologist on the 8th and John and I plan on having a very long discussion with him. If I don't feel comfortable with the way he handles things, I will be seeking out other doctors. (I might be doing this anyway.) I have some names of people to talk with at Mayo as well as one here locally so I will be seeking further opinions and possibly firing my third doctor since this whole thing began.
I have not yet had the will to confront my first NeuroSurgeon about the "malignant" tumor in my records. I hope to do it some time this week but things have been quite hectic at work so I will have to wait and see.
I have spoken with those at the Psychologist office and they were going to investigate to see if they can give my condition a medical diagnosis versus a behavioral one or not. I can't see why it will end up being a problem but I haven't heard back from them yet. If this fails, then I will have to file an appeal and hope that it goes through. Otherwise, I'm likely stuck paying the bill. I did finally find where they say they are "two different entities" but it is buried in a 20+ page document under "exclusions". Had I not been having focus issues, thus the reason I sought him in the first place, I would have probably seen this and known to verify it elsewhere but alas they take advantage of that to get more form their patients. I will basically have three choices of what to do if this ends up not being covered: find an in-network doctor (which I don't want to do), talk my doctor into keeping me on the meds with visits limited to twice a year, or wean myself off the meds entirely and learn to deal with the side-effects of surgery and radiation without it. Obviously, I would lean towards the second option but I would take the third before I would the first.
As if that isn't enough... I think that is it medically this month.
Emotionally - It has been another rough month in this category. The combination of a flare up of my anxiety (the reason I sought out my therapist, who is not to be confused with my psychologist two years ago), a sudden realization about what all I've lost with the combination surgery/radiation I've undergone, second guessing decisions I've made over the past two years, being depressed about not being able to drive for another three months, and just overall stress has made things quite ugly of late.
My anxiety rared up a few times and it's not about the type of thing you would expect. I don't have anxiety with things regarding myself, only when it has to do with my husband or son. You can rest assured that if something is going with them that is out of the ordinary, it will throw me into an anxiety attack. The thing with the State Fair 4H show, John doing his training, John doing jury duty, etc. They seem like nothing at all but the anxiety usually shows through even when I try to ignore it. Can I explain to you what would cause me anxiety about John serving in jury duty? No, I can't. It just does. As my therapist says, "Beware of Attack Frogs" and that's what it is. Something that can't really hurt you but causes anxiety anyway.
Actually, I did misspeak when I said none of it concerns me. I have been anxiously awaiting the right moments to deal with the medical things. Here's something about me that I bet not many people know... When I stall to make a phone call to someone (such as a doctor or insurance agent or someone along those lines) it's because I'm working the conversation out in my head so I don't panic and not say everything when I call them. As long as it is researched in my head, I can usually get through the call with no problems. However, it takes every ounce of my courage and determination to make these types of calls. Perhaps it's a big of a social anxiety but one that I've successfully dealt with and hidden most my life. I mean once the ice is broken, I'm pretty smooth sailing but until that ice is broken, I'm an anxious wreck.
Off the anxiety and more to the next thing. The 22nd, while at the State Fair Square Dance, it dawned on me just how much I lost with surgery and radiation. I literally hit it like a brick wall. You see, I love square dancing. I have a great deal of fun with it and I meet a lot of wonderful people. I used to be the first one ready to hit the floor and "whine" to the caller in lessons about wanting to learn more. I'd be out there each and every dance whether I knew how to do all the calls or not. Well, not anymore. I still love square dancing but the combination of mental fatigue, struggling to get into the flow, stamina, and pure loss of mental focus has made it a struggle for me to dance and it was never more apparent than that Saturday night. It was the kind of dance I used to love. Fast, lots of spinning, tossing in of seldom called calls, etc. I would have loved that before. Instead I felt mentally drained, dizzy, and exhausted after just four tips. This just slammed into me after the months of feeling myself go backwards again in the memory, mental reflexes, and other brain functions. All of which became more apparent following my first seizure. It's possible it is a byproduct of whatever caused the seizures, maybe it's the headaches causing me to be unable to think clearly, maybe it's the radiation doing that 10 year aging thing. Whatever it is, it hit me all at once that night. Needless to say, it was a bit depressing and made me second guess some of my decisions over the past two years. None more so than my decision to do radiation.
Then you've got the lack of being able to drive. I hate having to arrange a ride to do everything. If I have a doctor's appointment to schedule I have to do it, not just when it is most convenient for me but when I have someone who can take me and it doesn't put too much hardship on them as well. John is going to be more stressed this fall because I can't take off and do the shopping or whatever needs done while he is working. The more stressed he is, the more stressed I am. Not to mention the weeks of not being able to really get out much that will inevitably occur. I keep telling myself, you are lucky, you've got people willing to help and you can get to work with no real issues but that is beside the point. I miss chatting with my best friend on the phone while I'm driving home in the early evening. I miss getting home almost an hour earlier or being able to stay at work late if I'm right on the edge of a breakthrough. I miss running to the store to browse or going to a FLYfest with my friends. I miss being able to call up my chiropractor and make an appointment for thirty minutes from now and know I could make it with no problems. I know, it's not forever but I miss it all. I just keep telling myself I'm almost half way through. I just have a feeling the second half is going to be very difficult.
I don't think I even need to go into the details of why I'm stressed!!!
Mentally - I've already addressed this quite a bit. I'm slipping some whether it's from stress, fatigue, or just the physical factor of what is going on in my head. In quidditch, I used to be a nearly unbeatable player but now I find myself missing simple questions on a regular basis. I used to be able to do semi-complex math problems in my head, now I'm lucky to add together four or five numbers without writing it down. My memory is slipping again to the point I think I'm going to have to start carrying around my notebook again or utilizing my iphone more. Mentally I'm just not right and I hate being anything less than full capacity.
Physically - The headaches still continue at the constant, low-grade level. Luckily, they are being managed by routine Tylenol for the most part. I only have to occasionally supplement it with ibuprophen. I am hoping that I will be able to wean the Tylenol down to one every five hours instead of two but we're taking it one step at a time. I want to manage on just Tylenol for a bit before I start introducing reductions.
My hair continues to come in. I really do need to take a picture and post it. I'll try to do that before the next update.
Work/Family/Play - Wow, I'm not even really sure where to start here. Last week was not a good week on the work front either. On Monday, they announced they would be shutting down our sister plant and on Friday we lost one of our own in a motorcycle accident in Wyoming. He had been with our company for 35 years and was once the "head" of our department and the president of the company for a time. All I can really say is "RIP, Mike. You will be missed."
Onto some happy thoughts. My son seems to be doing well in school so far this year but it's still early. He has told us that he wants to be able to join BETA club and he must have good grades to do that so we hope he has turned over a new leaf when it comes to grades.
For the remainder of his 4H things over the summer (this may be repeat for some of you), he won the purple ribbon in both his woodworking and electricity. He would have been eligible for the State Fair in one of them but I goofed and we didn't know about it until it was too late to sign him up. However, we were all very pleased with it and as it turns out, it would have been difficult for him to show that weekend anyway. Just one more of the mysterious ways in which God works.
John has been busy at work but running around at home has him crazier than anything. With me unable to drive, all the errands falls on him. I don't think he realized how often I would make stops or detours on my way home to do things. Anyway, I think we will both appreciate my ability to drive when it comes back.
As for the second week of jury duty. He had to serve for around three hours and dismissed. Now he's done for another year. I say that in all honesty. In the five years before we moved he was summoned for jury duty four times. He only had to serve once because the other three were all within a year but still. He lucked out with one of them because it was a Federal Grand Jury and they said it could take 2-3 months! Anyway, now he's good for another year.
A quick run-down for some things I mentioned in another entry. My dad is doing fine and he's back to work with no restrictions. My grandma is out of the hospital and if we can keep her from trying to do yardwork, will be just fine. And... I think that's it.
Ok, that's all for now. I've got a Memorial to get ready to go to. Huggles
Tuesday, August 25, 2009
There's so much craziness going on right now, I'm not even sure at what point to start. I really should have been doing this over the past several days but needless to say my brain has been shot to the point I don't even know which side is up, let alone putting it into words. Needless to say things have been a bit stressful.
I guess I'll start with things not directly related but indirectly. Last week I was taking the last of my "unpaid" days that I need to take for the year (we have to take five days of unpaid shutdown before the end of the year.) The outline of the week was like this:
- My Dad fell off a cherry picker and bruised himself up pretty good. (He's ok)
- My Grandma was admitted to the hospital because of an infection that had her neck and face swollen and red.
- I spent two days with John in Iowa while he attended training for work.
- A tornado damaged the town I used to live in. (No one was seriously hurt or killed but they lost several buildings)
- John was called into jury duty for this week.
Now on the other side of things you have the issues that are ready to push me over the edge.
- Top of the list is that it is that I am still having issues with my neurologist's office. I now have the written proof of what the radiologist told the doctor at the clinic the day of my last MRI. It states just what John and I said. "Follow-up with the doctor in next few weeks and repeat MRI recommended in 1-2 months." Granted those words were not on the actual MRI report he wrote up later. I wouldn't expect them to be. These doctors are all part of the same clinic, using the same electronic patient files, etc. So there is no reason what-so-ever that they didn't see what the clinic doctor had told me. Yet they still don't seem to think that I need to have this MRI right now. Furthermore, I guess my neurologist has been in contact with my radiation oncologist to keep him updated... with the wrong information... and therefore I was unable to get an unbiased opinion about it from him either. I seriously to the point of believing that doctors are not in it for the patients in any way, shape, or form. I don't think I will be pushing matters with him any further but rather will probably be looking for someone new that has an office that actually listens to the patient instead of making assumptions.
- Then you have my famous "lie through your teeth" doctor. This would be my first neurosurgeon. This guy is almost like "that darn cat"... he just keeps coming back into my life to reap more havoc. Of course, this is the guy that told me I had a small, inoperable, benign tumor and put in my records that he would use the results of the biopsy to convince the patient that surgery is the best option.... yeah that guy. Well, I was diagnosed in August of 2007. I saw/talked to him the one and only time two days later. However, he was still my doctor in October when my second MRI was ordered. It was after this second MRI that I contacted my second and third opinion doctors. To this day, I have not been contacted by my first neurosurgeon with the results of that MRI. Both the other two doctors agreed it was most likely a benign tumor that was showing no change. So the saga continues until June when I had surgery and it was determined to be malignant. In between there, John and I were approached by a company selling cancer insurance. I explained to the guy point blank that I had a benign tumor and asked if this would be covered should it be found to be malignant in the future. I was told that as long as none of my doctors had ever diagnosed it as anything other than benign, then it would be covered. Well, I've been dealing with the claim on this since November of last year. This time they asked for the detailed billing and diagnostic of my past MRIs. This was no trouble to obtain but when I did get them, being the advocate that I am, I looked up the codes for the diagnostics. Amazingly enough, all of the codes equaled "unknown tumor of benign type" with the exception of the October 2007 MRI. What was it's code? "unknown tumor of malignant type." I admit, I haven't been able to gain my cool enough to call his office yet and ask him why it was diagnosed as this. However, there's other issues in this matter. If it's a clerical mistake, not a problem. Fix it so that I can get reimbursed on my claim. If it isn't a clerical mistake and he did feel the diagnosis was correct, then why did he not call me? As far as he knows, I have never seen another doctor on this and I'm sitting around waiting for him to contact me for my next MRI. That should have been in December of 2007!!! Therefore, if he did indeed feel that way, I have a feeling that I will be filing a malpractice suit. You don't label a tumor cancer, that you originally said was benign, then turn around and not even bother to inform the patient of it.
- Then you have the newest issue that arose today. After going to the psychiatrist to get my next refill of adderrall for my post radiation focus issues, I was informed that my insurance company was denying my visits to him because they said he was out of network. I went out to their website and their provider directory and right there in front of me was his name. I call the number on the card to find out what is going on. This is then when I am informed for the first time that my main insurance company and their "behavioral health" division do not use the same providers. While he appears in the medical side of it, he is not a provider in the behavioral side of it. Wow, nice of you to make that clear somewhere. On top of that, I was informed that I had nearly met my out of pocket deductible for non-network providers and so they would start covering it soon. When I looked at my profile, there is nothing that shows I've nearly met my out of pocket expenses. Oh, guess what else no one told me?!?! The behavioral side has a separate set of non network out of pocket than the medical side does. Guess I should have just known that when no where in my insurance plan does it tell me that. Anyway, my next question was then, why does it even show psychiatrist in the medical plan then? Well, sometimes a psychiatrist is seen for a medical diagnosis instead of a behavioral one. Ok, I see him for focus issues caused from brain surgery and radiation. Does that sound behavioral to you? Anyway, if all goes well, I will go back to my doctor and they will submit it as medical rather than behavioral and it will be covered. If not, I may have yet another fight on my hands or be a lot poorer!!
(Don't worry, I'm fine, just extremely ticked off!!!)
Sunday, August 9, 2009
We picked up my son's projects from the fair and now I'm more angry than bothered about the fact that we missed the 4H sign-up for the State Fair. Not only did he get it in woodworking but he got it with his electricity project as well. Furthermore, they never announced any of the State Fair Delegates at the show (something different than they normally do) so we might not have known until 2 PM even if we had stayed. I'm just aggravated. I mean from the sounds of it, he was not the only one that missed out because of poor planning.
I can understand that maybe they just thought he was interested when he didn't show up for a single project but when he never responded when he was to go in two projects, wouldn't that have been a sign you might want to contact him and see why he wasn't going in either project. In addition, what about the remaining 15 or so kids that didn't know they had won because of the way they did things this year? Didn't anyone see this as a bit suspicious? I guess my county will just be shy A LOT of representation this year.
I think I'm beginning to see why I remained in my original county for 4H instead of changing counties when I moved. My original county had their act together and everything ran smoothly. I remember the year I won in three projects, they wouldn't let me take them until I had picked the one to take. Heck, we had to make the decision the day of show for his projects. I hate that the county show is so close to the State deadline. It really does not give much time and for those of us that are unable to stay for the entire show and/or don't go to the county fair, we don't really know the results until after the deadline.
Oh well, I guess. It just sucks that he had two great projects and doesn't get to show either of them. I'm going to try to call the State Fair and see if there is any way I can get him into it with his woodworking even though the deadline is passed. Even if they "disqualify" him in the end, if they allow him to do it, I will feel much better. Maybe they will be understanding of the situation. Then again, I'm not sure anyone is understanding of anything in this state.
Anyway, if you see my son, please congratulate him on his two wonderful projects. Even though he probably won't make it to the fair, I'd like him to feel good about doing it. :)
Friday, August 7, 2009
I'm sure my son won't take this as hard as I am but I feel like I really took something major away from my son this week. I just feel like a bad mom right now and I'm hoping that by putting it out there for the world to see, maybe, if even a little bit, I can get rid of the guilt that I have right now.
Let me explain.
My son has always done really well with his woodworking projects for 4H. Monday was his 4H show where he showed his bow rack that he made for his woodworking project. He had already talked to the judge and they were probably less than a half hour from awarding the purple ribbons and announcing who would go to the State Fair. However, we decided to leave, thinking that if he did get it, we'd find out.
Well, I did find out yesterday afternoon when his 4H leader said something to us. He won the purple ribbon and State Fair delegation. However, the sign-ups were Monday afternoon and we had missed them. (I honestly had not looked into what had to be done for State Fair sign-ups because I didn't think we would be going so I had no clue it was that afternoon.) I called the extension office this morning and entries had to be turned in by 1 PM yesterday.
My heart sunk instantly. I feel like I took a possibly once in a life-time experience from my son because we didn't stay at the show another 30 minutes or so. It's not like I even have a good excuse. I felt fine. We could have easily stayed. John did have to return to work and we had work to do at home but none of that was as important as what I took away from my son. I feel like a horrible mom. Did I even try to see if he had won anything as the week progressed? no. I failed. I was too caught up in work and things that needed to be done.
Well, I'm not sure this whole thing has made me feel any better but at least I don't feel on the verge of tears now. I just feel so bad that I took this opportunity from him. He was so proud of his project and all I could focus on was the fact he waited until the last minute... again... to finish it and that there was a run on one side and the bottom had paint from the tarp it dried on. I was focused on the wrong things. You'd think by now I'd know that none of that is what is really important. *sigh*
I'm sure he will be ok with the news. The purple ribbon to him is just as important as going to the State Fair. I'm not sure he's actually ready for that maturity wise anyway but it would have been a good experience for him.
Do you ever sit back and think to yourself when you have been less than what your child deserves, Is this how he is going to remember me when I'm old and grey? I'm having one of those moments right now. I feel like I've already robbed him of so much in his youth that this is just one more moment we've lost forever. I mean it could have been very rewarding in the shadow of what we have all gone through over the last year.
Monday, July 27, 2009
Wow, it is still July and I'm getting this post out!!! July literally flew by!
- I'm 13 months past the partial resection of my Grade Three Brain Tumor
- It has been 9 months since I completed external beam radiation
- It has been 7 weeks since I had my first complex partial seizure and 6 weeks 4 days since my last simple partial seizure.
- It has been 2 years since I was hit in the face with a baseball starting this journey and nearly 2 years since the tumor was discovered.
The saga with the doctor's office continues... Remember when I said:
"He wants me to call next week to schedule an appointment with him to discuss the scan in more detail and schedule the next MRI."
Note that both John and I heard the doctor make the above statement. I call the doctor's office Monday morning to make this appointment. The reception area had to send the request to the nurse. First off she was snippy with me about why I was calling AGAIN. I told her that the doctor at the clinic had said that the doctor wanted me to make an appointment to discuss the MRI and future options. She replied (again very snotty) "well didn't the doctor at the clinic discuss the results with you?" I calmly replied "yes, but she said the doctor wanted to speak with me." Her response was again not professional, "Well everything is stable so let's schedule you for September 8th and it's a work-in so make sure and be there." (Note that September 8th is almost exactly 2 months after my last MRI and the radiologist had said 1-2 months.) Getting quite ticked off myself, I didn't push the subject since I knew it was no use fighting a stubborn !BEEP! and that I would be better off taking it up with the doctor when I finally get to see him. However, since it takes "two weeks to get an MRI scheduled", I will be calling her at the six week mark to get my MRI scheduled. If she doesn't have it set by the time I see the doctor, there's one more strike against her.
So I've decided that the nurse is a HUGE problem and her and I are going to have to have some rounds before she gets it into her head that I [s]probably[/s] most definitely know A LOT more about my condition than she does and therefore she needs to stop acting like she knows what is best for me and what to "waste the doctor's time" with. If I get any issues with getting the MRI scheduled, I will be going to the administrator of the clinic and filing a formal complaint. Furthermore, if the MRI is delayed and it shows any sign of problems that might have been prevented/caught earlier had I been allowed to speak with the doctor and get my MRI sooner... I will be pressing far beyond a complaint and if all goes well, she won't be a nurse for long. I'm not usually this way but she is playing God with someone's life, not a puppet and that someone just happens to be me!!! Besides, last I knew a nurse did not have a medical degree nor the right to make decisions about a patient's health. Therefore she should also not be deciding what to pass on to the doctor and what to conveniently leave out. UGH. I need to get off this subject my blood pressure is rising!
Emotionally - Well, it hasn't been a good few weeks in the emotional department either. I'm very short tempered right now because of the headaches, lack of sleep, and total frustration at the nurse. The other day I came up with a thought that puts it all very well into perspective. I feel like I'm a prized fighter in the match of my life (more of a fight for my life) and those that are supposed to be standing in my corner and giving me a boost and support (medical community), are instead taking sucker punches at me trying to make me lose. I've come to realize now why so many people do not take their health into their own hands and be their own advocate. When you are met from constant and total resistance, it's hard to find the fight. It would be much easier to sit back and let the doctor manage my life. Heck, maybe I should have long ago started chemo and then we wouldn't be in this place right now (I'd probably be in worse shape but I'd be getting my MRIs!)!!! Oh to be able to take the easy way and just follow whatever the doctor says without researching alternatives and getting the facts. That would be the easy way and I've never taken the easy road.
Mentally - I can't deny that the loss of my license is taking it's toll on me mentally. I hate being reliant on others and having to coordinate an already crazy schedule just a bit more. I spend as much energy on this as I do most other things in my life. My son and I had plans this summer during my company shutdowns. Now it is "just another week stuck at home". It feels a lot like last summer did when I also could not drive. I just hope this isn't a pattern and that things go smoothly next summer. (Of course, hopefully the economy has improved and we don't have the shutdowns next summer.)
I've buried myself a lot into facebook because it's something I can do that is mindless and can get me away from everything. That's not a good thing but it works. I don't even really get pleasure in my Harry Potter sites right now or even games for that matter. I'm sure it's just a low part of the roller coaster and I'll get back ahead of it, but right now this whole thing sucks and it's making me someone I'm not.
Physically - Well, my physical side can be summed with one word... headache. Honestly, things have been better this week than they were the previous week and I've managed to get motivated to work on the house some and my energy is a little better. Not a lot but a little. Now if I can just add more than 6 hours of sleep a night into the equation, I might actually feel pretty good again!
Well, I'm officially down a pant size! One day over lunch my mom and I went shopping and I got a couple of pairs of pants that fit me pretty good. They are a size smaller than what I've worn since I had my son and honestly, I'm probably not far from being able to go one size smaller yet. Unfortunately, I do have two problem areas that are not my tummy and therefore I struggle with the next size down because I never get it far enough up to be at the tummy. I don't want to be uncomfortable so we'll stick with this size for a while!
If all goes well, I may be getting my first haircut since I had surgery. I'm hoping we can figure something out to make my hair lay better than it does right now. I'm struggling with the very thing I hate about natural curl... it always looks unkempt to me no matter what I do to it. Maybe we can change my mind's eye on this a bit. LOL
Work/Family/Play - Well my son got a blue ribbon in foods and a blue ribbon in his consumer project at the 4H show. He will be showing in woodworking and electricity on August 3rd. He has been working with his dad to finish up these projects in a timely manner. It's nothing like waiting until the last minute!
Today my son left to go to Chicago for a trip with 4H. I think he will have a blast. It's only an overnight trip but it's good for him to get away since other plans became shot when I had my seizure. This is two summers in a row that plans didn't exactly go as planned thanks to my health. However, next summer we are going to Disney come hell or high water!
We also found out that school starts for him on the 19th. This is going to cause a few minor issues because we were planning on all being out of town during this time. I guess we will have to find someone for him to stay with so he can stay home and not miss any school. I think they start earlier and earlier every year. It's just not right to start school before the State Fair is over!
All jurors were dismissed for John's first week of jury duty. Now he has to wait until August to find out if he'll have to serve on that round.
Well, I think that's about it for now. Hoping I get more sleep tonight than the three hours I had last night. Hoping this is finding everyone well. *huggles*
Sunday, July 12, 2009
Well, I started on the steroid, per doctor's orders, on Saturday. Not doing to bad with them so far. Little on the cranky side and having hot flashes out of this world but other than that, not too bad.
The headaches have also improved. Friday night I figured out the trick. You see, I am typically a belly or right side sleeper. This is how I discovered on Thursday night that my headaches got worse if I slept on my right side. Well, Friday night I forced myself to sleep on my back. This has never been an easy thing for me. I'm the one that slept with my belly in a triangle of pillows when I was pregnant with my son because it was the only way I could sleep. Anyway, I found that if I put a pillow under my ergo-neck pillow and shoved another pillow under my right side and another to curl up with on my left, I could at least hit a light sleep and keep the headaches from rearing up at night. I actually went all night Friday night without having to take additional pain meds. Same for last night. So, hopefully I'm working on getting this thing figured out. I still have to be careful because any pressure no matter how light on my right side is causing the headaches but it's still much better than it was.
I think yesterday I got through the day with only 5 ibuprophen and 4 tylenol. I'm trying to move to normal doses of tylenol instead of so many ibuprophen. I guess I'll know at a later date if the steroids are doing anything for me at all other than making me a bit moody.
Anyway, I just wanted to post a quick update so I had better get some things done now. I have some paperwork I need to get through and a load of laundry to fold. UGH!!!
Friday, July 10, 2009
Ok, first a little update on what has happened since I posted my last update.
On my last update: I had called the neurologist concerning the headaches and was told I could not get an MRI until it had been six months and he wasn't concerned about it anyway. It's just scar tissue so nothing to worry about.
Since then: I contacted the insurance company and the doctor is full of crap because there is nothing that prevents a medically-necessary MRI and they could see no reason this would be denied.
Evening of the 9th, while waiting for a headache to go away, I realized part of the headaches developed when I would lay on my right side of my head. I got to thinking that about a week prior I had hit my head hard getting out of my mom and dad's car. The more I thought, that was also when the headaches went from "constant but bearable" to "horribly painful". Now concerned about a possible concussion, I contact his office again.
This is where we come to today. I heard back from his nurse just before lunch and she asked for additional information on what I was experiencing. Well, by this time I was not only dealing with the headache but I was extremely nauseous and just not feeling myself. She called back around 2 and the doctor said that if I was concerned I should go to Prompt Care or the ER. At this time of the day, he would not be able to get me into an MRI for several days but they would be able to push it forward.
So off to Prompt Care we went. I had a great doctor and she agreed that it needs to be looked into. Within 20 minutes I was ready for an MRI. The basic conclusion was as follows: There has been a lot of change since the last MRI but the radiologist was pretty certain that it wasn't recurrence of any of the tumor/cancer. However, he did think there was a significant amount of scar tissue and that it should be reevaluated with another MRI in one to two months. He said that the scar tissue was positioned as such that it was causing pressure on the "flap" where they went in for surgery and thus causing my pressure headaches. They contacted my Neurologist and he agreed with the radiologist's assessment. He wants me to call next week to schedule an appointment with him to discuss the scan in more detail and schedule the next MRI. Basically, if we had not gone with the MRI, it might not have been the end of the world but we'd be stretching this thing out several more months waiting to see if things changed even more significantly thus changing the diagnosis to a possibility of regrowth.
The final verdict being: There is significant change (this is a bad thing but normal post radiation and surgery), none appears to be regrowth (a good thing), the scar tissue appears to be causing some pressure and the headaches as well as the seizures (a bad thing), we need to reevaluate it in a short term setting to make sure there is indeed no regrowth coming (a good thing). Basically, the Neuro had to "eat a little crow" because at first glance it was very suspect for regrowth and every doctor I was in contact with today told me I was well in my right to get this MRI and that this needs to be watched very closely.
Oh, the remaining bad... go ahead and take the steroids and take ibuprophen/tylenol for the headaches. Not much else right now they can do. Gee thanks, Doc!!!
What a day. I'm going to bed now. The good, the bad, the ugly.
Wednesday, July 8, 2009
This post in in response to a comment left by Kristen:
hi, i just read your post....was wondering if your nerve healed back to normal.Thanks for the inquiry, Kristen.
I will admit that I don't think too much about the trigeminal nerve any more taking the lead from my doctors who all think it is nothing in comparison to the other things I am dealing with. (I don't disagree but I also hate having some of these nagging little things out there that they won't deal with because of the "bigger fish to fry".)
Anyway, I have been taking Neurontin to keep the nerve from hurting with the "windburnt" feeling I had in the beginning. Therefore, it is very difficult to say for sure if it has healed fully or not. I still ocassionally get the numb feeling and my right eye still goes through major bouts of dryness, which are all issues I had in the beginning with the nerve. Therefore I am guessing it is still there and not really back to normal. With the assistance of the medication, it feels more normal but it has its days when it isn't.
I hope I was able to answer your question, Kristen!
Ok... so it is July. I think I spoiled you all in June with all the updates. Be prepared because you may have more of that in July!!!
- I am a year and just shy of one month from the partial resection of my GRADE THREE BRAIN CANCER. (I'll explain the capitals here in a bit.)
- It has been 9 months since I completed radiation.
- It has been 1 month since my first complex partial seizure.
- It's been almost 2 years since I was hit with the fate driven baseball that started the journey!
I did finally get my partial for my teeth. It feels good to have teeth again and within about two days after wearing them, my mouth pain went away. Imagine that...
Now to open the can of worms... As you all know, I had my first seizure last month. Thanks to Keppra, I have not had a seizure since the 11th so that is a good thing. Now I just have to wait out the 6 month grounding so I can drive again and things would almost be back to normal. My neurologist is pretty certain it is just scar tissue causing the seizures but I myself am beginning to have my doubts. About two days before the first seizure, I had some horrible headaches. I didn't think too much about it then because my neck was bothering me, my mouth was killing me, and it was starting to get hot out and the heat always gives me minor headaches. I figured the three things together is what made them so bad. Well, the headaches continued beyond those two days and well past when I stopped having seizures. I asked the neurologist about them and he said it was probably the scar tissue causing them as well. Long story short, I've now been dealing with the headaches for a solid month and they seem to be getting worse rather than better. Knowing severe headaches can be a sign of pressure in the brain or tumor regrowth, I contacted his office about them thinking maybe we should get another MRI to make sure there is nothing going on up there. If it is regrowth we need to start treatment yesterday so we really shouldn't wait another month to have the MRI.
Well, his nurse spoke with him (without even having talked to me first just going by what the receptionist took down) and he said the insurance company would not approve an MRI less than 6 months apart. For one I know this is not true because I had an MRI every other month leading up to surgery and secondly most Grade Three Brain Cancers have MRIs every three months for the rest of their lives. She stuck by her guns saying that it would be a waste of money and that he said it was not necessary. Instead they are putting me on something for the headaches and will wait until August for the MRI. Guess what I'm going to do today? Call the insurance company and see if a cancerous brain tumor is allowed an MRI only every six months or not. Anyone know a good neurologist in central IL?
Had she not ticked me off by being so adament that the doctor was more knowledgeable than me on the subject I would have probably remembered to tell her the other issues I've been having. Let's see, signs of a brain tumor: headaches, dizziness, seizures, nausea, feeling not like oneself, etc. Well, I've have all of those signs in the past month. I can't believe all five of these signs would suddenly show themselves, when I have never even had a sign from the tumor in my entire life, if there wasn't something more going on up there. I was sure to call John and tell him what was said. I want as many "witnesses" as possible for when I have my MRI in August and it shows regrowth!!!
Emotionally - *Deep Breath* Well, as you can see by the above section, I'm not in a very good place emotionally right now. I'm in pain, I'm aggravated, I feel like I'm being hung out to dry by the fourth doctor since this journey began, I'm in pain, I'm annoyed that no one is really listening to what I'm trying to say, I'm in pain, I'm frustrated that I've now had to fire every doctor that I've dealt with on this issue but one because of their attitude or lack of listening power, did I mention that I'm in pain? Obviously, my neurologist wasn't at the hospital when I had surgery. He doesn't know my pain tolerance. Not many are able to leave the hospital on nothing but tylenol when they've just had brain surgery. Well, that same person is taking between 8 and 12 ibuprophen a day to keep the pain to a tolerable level. Does this sound at all normal to you?
I guess the biggest issues are that not only am I relying on everyone around me to get places but my resolve to fight doctors is almost gone. I am in too much pain to care anymore and that scares me. I've always been a fighter and I've always been able to go against the odds and get what I know is needed but I've not got it in me to do anymore. So two major areas of my personality have not been beaten down and I fear my will to fight this crap in my head will be next. Unfortunately, feeling this way now is not a good thing because if my fears are right and this is regrowth, I am going to need all the strength I've fought with for the last year and then some to dive into the next chapter of this story.
Mentally - I'm getting quite a bit back into the issue I hit many months ago where the Mental and Emotional sides are pretty much one. My motivation has again taken a hit but I think a lot of it is because my mind never really feels clear because of the pain I'm experiencing right now. I have things I need to do this week while we are off on shutdown but I am lucky to get half of one thing accomplished before I want to curl up back in bed to sleep. (Yet another symptom that has arisen since right around the time I had the first seizure.)
Physically - I knew the many months of reporting an improvement in my stamina would have to eventually stop. Well, this last month has shown a major decrease in my stamina and my energy level sucks. It's almost bad enough that when I see the Psychiatrist on the 21st, I'm tempted to try going off of the Adderrall and see if there is any change at all. I feel at least as bad as I did when I started it back in December, if not worse at this point.
I have had to start wearing belts for most of my pants again. I have broken the threshold of my lowest weight since having my son. Yet one more thing that is starting to concern me a bit in hindsight. I'm not doing anything different that should be making me continue to lose weight. I haven't danced but three times all year and outside of a little yard and house work, nothing major in that respect either. I had plateaued nicely before I had surgery last year and basically felt that if I got back to that weight eventually, I would be happy. Now I'm working on well below that weight. I guess this is just something else I need to mention to all of my doctors and see if any of them truly try to figure out what is going on. I thought it was supposed to be harder to lose weight the older you got, not easier.
The hair is doing amazing and I may actually have to go in for a haircut soon so that maybe someone can do something with this disaster on my head. The "bald" area isn't really bald anymore. It has lots of very sparse, fine, light colored hair. It is quite a bit lighter than the hair around it so it still sticks out pretty bad but it is truly there!!! If it weren't for the horrid curl that has taken residence, I could do a combover right now and hide the fine area but the curl makes it impossible to do. Have I ever mentioned that I hate curl?
Work/Family/Play - Well, I am mid way through the 5th week of shutdown we have had this year. Our plant has two more scheduled. One in August, one in September. There is actually a whole month between this one and our next one. I hope I am able to make it through them. My body has never fully gotten back into the swing of full-time employment since coming back from surgery last year and the shutdowns have been just far enough apart that just when I get to the point I can actually make it through a week without nearly losing it, we are off again. This next stint should be interesting!
It does help that we are very busy in IT at work. We have several projects going and that is good because the time we are there goes by quickly. However, it also means I wear myself out more trying to reach deadlines in the drastically reduced time frame. We'll see how it goes over the next few weeks.
John and my son are working on 4H projects this week. I think he has finished his electricity project and they will be working on the woodworking next. He has his foods and consumer show tomorrow. He has his consumer project done but he needs to get moving on making his muffins or he's going to run into supper making them.
He was able to pass the 6th grade. He didn't pull it off by much but I think that he was scared into working a bit harder next year as long as this has been a boring enough summer for him. (His poor grades has warranted a summer grounding from all video games)
John is finally slowing back down with planting season. He is putting in normal hours again and should be home Saturdays again for several weeks. He has declared he will be taking some days off to get things done around here but we'll see. He is also going to have to take some time off for jury duty at the end of July and August. He has the darndest luck with that. I think in the 12 years we have been married he has had 6 summons for jury duty. He served the first and the fourth but got out of the other three because he had just served. One was for the federal jury so we were both thankful he didn't get caught with that one. At the time he received it, there was no way we could have survived if he had to miss a week or more without pay.
John and I were able to dance twice the week of Relay. It was great! I miss dance so much but the way I feel right now, I'm not sure I could dance if I wanted to. There won't be any more dances until the 18th so maybe I'll get something sorted out between now and then. *sigh*
Relay - Relay was a huge success even if we did have to move it inside. I haven't finished figuring up the remainder of our money but I will need to do that by the end of the week. Our team was a silver team based on the amount of money we raised and we were the second team in fundraising for the event. I will be sure to report the final total after it is all totaled. Thank you all again for your support!!!
Well, I guess I better make some phone calls now. I need to call the hospital in Chicago to get some paperwork filled out and my insurance company to see if my neurologist is just trying to pull a fast one or if I indeed can not get another MRI with a cancerous tumor until August.