Tuesday, October 27, 2009

Hello all!!

Ho-ly COW!! It's been a ridiculously long time since I have been on here to update. That's a good thing, right? Yes!!

My last appointment with Dr. Datta (my onc) was at the end of September...nothing new to report! I don't see her again until December. The port is staying in for now--I will get to that in a second.

School is...okay. I took on a little too much at the beginning of the semester, but I have worked that out and am now working to get back on track. The good thing is that I am doing well in my classes. The semester is almost half over already...wow!! I've been really glad to get back into the swing of things and be busy.

Ted is still working at Camp Ripley. He is gone all week and is home on the weekends. His orders were extended to next October--yay--which means that he has a dependable job at least until next year!! Braxton-Hancock never called him back, and it sounds like they are still struggling. Ted will be going to Basic Non-Commisioned Officer Course next week--one step closer to becoming an officer in the National Guard. He's so smart, and everyone respects him, and he's getting the "in-charge" positions all the time. I'm very proud.

A spot of uncertain news concerning my health--this issue with my hands (weakness, muscle atrophy, numbness, loss of sensation, etc) and the residual swelling in my legs has come to the forefront of everything. I now have a considerable amount of joint pain and pain in my hands and forearms. My onc did a urinalysis a while back and there was apparently some protein in my urine, so she had me go see my regular physician, Dr. Tallman. Another urinalysis showed that my kidneys were fine and no protein. Any kind of kidney dysfunction would have explained the huge amount of water retention I seem to be experiencing. SOOO...Dr. Tallman thinks that the swelling in my legs and the issues with my hands may possibly be related by some sort of neuropathy (nerve disorder). A few years ago, I was pushing for some answers about whatever it is that is going on with my hands. I saw a few different doctors and was referred to the University neurology clinic. The doc I saw there was NOT proactive in the least--he did a blood test for a disorder called multifocal motor neuropathy--it's an autoimmune disorder where your immune system attacks the motor nerves in your extremities--and did not find the antibodies that would suggest this disorder. He told me that we would "wait six months and see what happens." Well, I was quite frustrated at that point and just figured that no one knew what was going on and that I would have to just push through it, and that it wouldn't get any worse. Well, it's getting much worse. I now have noticeable decrease in muscle mass in both hands and this relentless PAIN. I can barely wash my hair or dress myself, makeup has become an impossibility, brushing my teeth is very difficult, and I'm slow at work at drop things constantly. Dr. Tallman looked back through my chart and it appears that every doctor I saw felt very strongly about mulitfocal motor neuropathy. Had I known that, I would have been a little more proactive about getting a diagnosis two years ago. Now I'm in this situation where this is causing me considerable disabilty and I don't know what to do about it. Dr. Tallman referred me back to the University and urged me to be strongly vocal about finding a diagnosis. I have to know what's going on. I don't want to apply to vet school if two years into the program, I will be physically unable to do the work. If this is permanent and/or progressive, I have some decisions to make. I hate being in limbo like this. I see this neurologist on the 18th of November (soonest they could schedule me). I plan to be VERY vocal about what I want and why--if I can't get answers there, then I will find somewhere else. I'm tired of being in so much PAIN every day, I'm tired of feeling like I can't do anything, and I'm tired of being so exhausted all the time. I want some answers.

So, as far as the port goes, I have opted to leave it in for now. If this IS a multifocal motor neuropathy, the treatment for that is IV immunoglobulins and I figure it will be much easier to do that with a port. I'm tired of being poked. I just want to be fricken NORMAL for once--not have to worry about my health all the time. Sometimes I get absolutely frustrated and wonder why this has to happen to ME. I've worked hard to maintain my health through responsible diet and exercise, stress management, etc...and then there are people who abuse the snot out of their bodies and can run marathons and are perfectly healthy!! Those thoughts soon pass as I think of how much worse off I could be--I have SEEN how much worse I could be--and I become thankful for what I do have. I think of all the wonderful people who are no longer with us who obviously have had things worse than me. My heart aches for their families, and it is (unfortunately) those thoughts that put things into perspective for me.

So, in the coming months, we will see what happens. I am anticipating a muscle/nerve biopsy and tons more blood tests at the very least.

I hope everyone is doing well and getting geared up for the holiday season that is soon to be upon us!


  1. Glad to read your post today...but very sorry to hear you are having some other difficulties. I hope it can be resolved so you can move on. I will be thinking of you.

  2. Hello Nicole!

    I wanted to let you know about an interesting cancer blog a group of cancer patients have been working on.

    A fellow tongue cancer patient was sent home to die. There was nothing more that can be done. Cancer survivors ask him life altering questions.

    Please read: Dead Man Talking http://beyondtheglassdoor.blogspot.com

    Peace B


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