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.
Huggles.
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