Thursday, April 29, 2010

MRIs: We Hold Our Breaths

I have a bit of time so I'm going to write this one up. I started the year with a few entries about the things that I had not revealed that we as brain tumor/cancer patients go through that others don't really understand. With my next MRI looming on the horizon on Monday, I thought this was a good opportunity to reveal the uncertainty we go through when the MRI is within sight.

Even when we are almost certain that everything is fine and nothing has changed and we'll get a good report, there is always that lingering feeling in our minds that things are going too well. That this MRI is going to slap us across the face and throw our worlds back into turmoil. A lot of us have fought the cycle for 5, 10, 15 years and each time we tell ourselves we have nothing to worry about but that thought still works its way in to our subconscious..."what if it's not fine"? While some of us never fully get used to our new normal and the limitations we now have, some of us have accepted and learned to thrive with that new normal. However, that one MRI that shows something wrong again can throw us back into a place we are not ready to be back in.

I'll be the first to admit that, while the time it starts varies, I hit that period of time where just about the only thing on my mind that I can focus on is the results of my MRI. The days leading up to it is full of uncertainty thinking about all the little things that occurred since your last MRI and whether they could be indications of regrowth. Often we feel like we have to put life on hold for days, weeks, or even longer prior to the MRI. This particular MRI has done just that to me. We have put off putting the final arrangements on our trip until the results from the MRI are in. All just in case something isn't right and we have to move the trip around to accommodate treatments or specialist visits.

While those around us can move on with their lives once the surgeries and treatments are "done", we always have that lingering in our mind that it can all change with just one MRI. It just takes one cell to make the mutation and cause us to enter the world of uncertainty again.

I think one of the most torturous things doctors do is to wait weeks to give the results of tests such as these. While they might not be concerned, it's the patients that sit around wondering, "Is there something wrong", "am I worrying over nothing", "why aren't they calling". It's the very reason I've gone out of my way to ask a lot of questions of the NeuroSurgeons and Neurologists and to very carefully compare the written report to my MRI so that I can get a good understanding of what to look for when comparing my MRIs and thus, be able to at least partially calm these feelings before I get that call. I never fully ease until I get the official results but at least I'm prepared to the best of my abilities for what might be said when I do.

Whether it is a kicking in of our "Fight or Flight" response, a coping mechanism in case the worst is determined, or an unnatural feeling that things just aren't going our way but it's something we go through and often silently fight so we don't concern those around us. While we all cope with these feelings in our own ways, keep this in the back of your mind when you know that an MRI is coming up for someone fighting a brain tumor/cancer. Follow their lead. Making light of the situation when the person is genuinely concerned about it, can cause them to feel like no one cares. On the other hand, being overly concerned about it when the person is not outwardly showing any concern, can cause them to have panics about it they shouldn't. No two MRIs are handled the same way just as no two people are alike. :)

For those of you that know me, you can guess which method I take. Let me do the worrying about it and don't get overly concerned about it. It's my natural tendency to worry more about others than myself so let me worry over the MRI in my own way. Remember that the smile on my face is sometimes just a facade that is hiding my true feelings but if you reveal that, it could break.

Huggles all and shall Monday hurry up and get here!!

Saturday, April 10, 2010

It's Not March so... Update...

About to get busy again so updates may be even more scattered than normal...

  • I am exactly 22 months past the partial resection of my grade three brain tumor. (I believe I was on the phone talking to my boss about this time 22 months ago. LOL)
  • It has been 18 months since I completed external beam radiation.
  • It has been 10 months since my complex partial seizure and have been seizure free since.
  • It has been 2 years and 8 months since my brain tumor was discovered accidentally.
Medically - There's been no major changes on the medical front which is a welcome change of pace from the last 3 years. My next MRI will be in May and when it comes back stable, I'm guessing we'll do another 4 month or possibly even 6. We'll just have to wait and see.

There is actually one thing going on and that is that I'm trying to work my way off of the Adderrall that I've been on for the past year and a half for my focus issues. I think I finally have them under control and I'm hoping to be completely off of it before the end of the year. *crosses fingers*

Emotionally - Stress and trouble sleeping caused me some issues a couple of weeks ago but things seem to have leveled off again and I'm back on the level. Work has been stressful but I'm hoping some events that occurred over the past week will help that situation a lot. I'm thinking that will help my stress issues out and keep me in a good spot emotionally.

I've got to work on my short fuse. I'm not one that typically gets ticked off very easily but it has been one of the changes I've noticed the most since I had surgery/radiation. It doesn't matter who or where it is, I really have to fight myself to keep from losing my cool and this is very unlike me. I'm hoping that as the stress levels go down and I'm able to focus more on my well-being and less on the medical side of things, I'll be able to concentrate and focus on this change in my personality. It's probably one of the more frustrating changes I have noticed, even more so than the focus issues I've had and hopefully have overcome.

Mentally - My focus issues have reached a point where I can pretty well control them as long as I am well rested. My focus level is pretty par with what they were prior to surgery/radiation so I feel that is a good sign and thus why we've begun coming off the Adderrall. I know my focus issues may go backwards for a short time after I completely come off of it but I think I'm now up to the challenge and it's not going to be as dramatic of a changes as it was originally.

For the most part, I'm back to a satisfactory mental level again. I feel I am capable of most of the mental tasks I could once do, even if I do take a bit longer to line them up now. The sequencing being one of the things I still struggle with a bit. However, even that is beginning to improve without much physical work on my behalf so it's just a matter of time for it to get back.

I guess what I'm saying is while I still have minor issues, I've reached a point that I am satisfied where I am and I feel it is safe to say I'm as sharp as I ever was.

Physically - I did get back to working out on the Wii but it was with EA Sports Active with the occasional Wiifit. I was through day 12 of the 30 day workout when I began having knee problems and what I think was a mild UTI. Both are now gone but with spring here, I'm needing my workout time to be outside doing yard stuff. So it's still exercise just in a different form.

For those of you wondering, the shorter hair is growing on me and as long as I keep it long enough to put it in a pony, I will probably keep it until the hair on top catches up with it.

Work - While I have vowed to not let things stress me out, I can't deny that things unrelated to my two projects has managed to do it. However, a huge weight was lifted off my shoulders this past week so I'm hoping that will help matters a lot.

Home/Family - Spring is here and that means John is working the longer hours and Saturdays again. Spring is always a bit hectic because there's so much that needs to be done around the house but he has very little time to help. Our son is old enough now to help out a lot but there are some things the two of us just can't do (like getting the lawn mower ready so we can cut the grass that is almost knee high now). We always manage to get it all done even if it's not in the timeframe we hope.

We are also working on our plans for our summer/fall vacation. We will be driving down to Florida the later part of July/Early August. It will be a great trip and we will get to visit with family, go to Disney, Universal, Busch Gardens as well. We are still in the planning stages and will be waiting for the final timeline until after my May MRI but we do know what we want to do and the when is the only TBD.

Perhaps the parts I look forward to the most is meeting some of John's family for the first time, visiting my cousin Polly at their home, and swimming with dolphins at Discovery Cove. The swimming with dolphins will be awesome and it's one of those things I've always wanted to do. I think the only bad part about it will be holding the fish if I have to feed them one. Yuck! For those that don't know about my crazy dislike of fish, I will have to reach as far into my determination as possible to touch any fish they ask me to feed the dolphins. I won't even swim in the ocean because there are fish in there... I have often been heard saying I don't eat it, touch it, or cook it. Although I have started eating some of the less fishy tasting fish. (I have goosebumps just talking about fish. UGH)

I look forward to the adventures that we will be taking on over the next several months. Some big dates will be coming along as well. June 10 will be the two year anniversary of my surgery and cancer diagnosis and the three year mark of my brain tumor diagnosis will be in August. For the first time in almost three years I can honestly say that I'm happy with the direction things are going and I look forward to the next year. Lots of fun things and big landmarks are on the horizon.