Happy Thanksgiving, Giving Thanks - 11/25/2011

First, I would like to say "Happy Thanksgiving".  We had a wonderful day spent with both of our families!  And, of course, I think each of us can give thanks for our blessings ... for me, it is being here to celebrate holidays with everyone, feeling well, etc.

On another note, we had quite the "excitement" the last few days.  I seem to always find some way to add this "excitement" to our life, especially when we were already busy enough with getting ready for our trip.  And, of course, we weren't sure we would be able to go at one point.  I'm just glad we were home and able to get medical advice here at MGH....

The short version of the story is that on Tuesday this week (11/23/11), Kurt came home from an appointment and we started talking about a bowl Nathan made in school and how we made ashtrays.  Well, I thought I was clear in basically saying that I didn't make ashtrays because I didn't want my parents to think I agreed with them smoking.  Well, that's apparently not how I said it... not sure what I said but they didn't understand me.  I was telling Kurt the girl was stuck in the bathroom (Ashley, who was in her bedroom really).  There was many other funky things I said and I kept looking at them, clicking my tongue and then saying "Aww..." like I was looking at a baby.  Anyway, I told Kurt I was really hungry and grabbed something to eat.  (I barely ate anything - much less anything really good for me - that day.)  Kurt said I acted like someone with low blood sugar.  I ate my dinner and then became very lethargic and was ready for bed.  He said at this point I was acting like I had a seizure before.  This was about 6 something in the evening.  After this, I did go to bed but didn't have any more weird symptoms.

The next morning (Wednesday) I had an appointment at the oncology office for a mediport flush (monthly they have to "flush" the pump they use for IVs, blood draws, etc.).  We mentioned to my nurses and also a friend who works there what happened and I ended up seeing the nurse practioner there.  She called my oncologist (lucky for me I have her cell phone number - not so much for her probably)!  The nurse practioner determined I also had a sinus infection.  I ended up having a STAT MRI that morning. 

After the MRI, we weren't sure if we would be called to see the neurosurgeon and since his office is in the hospital, we thought we would go up there and see if we could talk to him.  His PA called us back and told us that they think that I did have a seizure / seizure activity.  She reviewed my MRI with the neurosurgeon and then called him while we were in the office.  She came back and told me that he did think it was okay for me to go on our trip BUT that I was not to drive!  :)  Of course, I hadn't planned on it but it made me laugh as he heard me countless times asking him when I could drive again. 

They put me back on the anti-seizure medication and gave me a prescription for the anti-swelling medication.  The anti-seizure medication doesn't bother me at all.  I don't have to take the anti-swelling meds unless I start getting headaches.  I don't like that medication... it makes me cranky/irritable, MEGA hungry and just generally miserable.  Ask my mom/mother-in-law - I've been a cooking machine!  And, I've gained @15# in two weeks ... I am serious when I say I could eat from morning to night (very common with this medication).  Now I am off that medication and feeling back to normal with my eating.  Hopefully that 15# will eventually be lost but ....   Anyway, I don't want to have to go back on that med but if I have to, I will!  I just got off of this medication and the "withdrawal" from it also gives me some weird symptoms:  facial/neck swelling, rash/bumps on my face, etc.  So, for those of you who may see me ... yes, my face is swollen from getting off this medication (and my belly is swollen from being on this medication and eating constantly)!

I thank both offices and the MRI department for all their help that day and for seeing me at a moments notice! 

We are leaving in about 5 hours to start our trip to Florida.  We will be gone for approximately two weeks -one week in Florida and one week to go to Myrtle Beach, Charlotte and Washington D.C.  (Who knows if these destinations will change.)  Everyone is super excited!  We were so worried that the doctors would tell us that we shouldn't go and we would have to tell the kids. 

I can't wait to have lots of fun with the kids and Kurt, make some FOREVER memories with my family, enjoy the warmth and sun (with sunscreen, of course) and leave the stress/worries at home!

We have MANY people to thank for their generosity in helping us make this trip possible or helping defray costs for us!  Thank you all!!!!

My next medical appointments will involve a PET scan on Tuesday, Dec 13th (I was supposed to also have an MRI that day but because I just had it, I won't have to do that too).  I will get bloodwork and see my oncologist on Monday, December 19th.  I will know after that appoitnment how my body is reacting to the Ipi treatments and what my next steps in treatment are. 

I will blog again after that appointment (unless I decide to blog about some of our adventures in Florida).

We believe....