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....

6 Months Since Diagnosis - 11/10/2011

First, I know it isn't early now but I am wondering why I woke up today and didn't go right back to sleep?  :)  Since I have been awake for a couple of hours, I thought I would enjoy the quiet of the house (kids and Kurt are still sleeping since it is a snow day today) and blog.

I seem to find the irony in many of the situations that I have been through this past few months.  In fact, May 10th started out much like this morning - the kids had a day off of school due to weather (I believe that was because of no power - not snow - but they were still home.)

In many ways it is hard to believe that 6 months ago today I went to the ER and was diagnosed with metastatic melanoma.   In one (or possibly a few) way(s), it feels like we've been through hell and back ... yet, I do count my MANY, MANY blessings at the same time.  I have been feeling relatively well throughout this past six months (and hope to continue to for a very long time).  I've been able to spend lots of time with Kurt, Nathan, Ashley, our families and friends.  I've been able to go back to work for several weeks throughout the last few months.  The harder times come when I have some setbacks like finding more brain tumors, going back on medications that make me feel not like myself, not being able to do 'normal' life things like work. 

Today is my 6 month mark for driving as well.  Don't worry - I don't plan to jump behind the wheel just yet!  :)  I don't know that I will drive any day soon but knowing that it is now an option, I at least have a little piece of mind that I am not "stuck" here. 

Part of this whole journey has also made me realize that I have not really thanked the people that are truly always there for me!  While I am sure people understand, it is not the easiest thing to go through.  I try my best to remain positive - hard to do sometimes - but I also realize that I take a lot of my negative attitudes out on those that I love the most.  I know that as hard as it is for me - it has to be twice as hard for them! 

I thank you all for walking this incredibly awful journey with me, staying by my side, lifting my spirits when they are down, the TONS of prayers/cards/letters/emails from everyone (even strangers), having belief in a miracle and loving me through it all!

Update on Radiation, Chemo, Etc. - 11/7/2011

I haven't felt much like typing the blog this past weekend.  After being put back on decadron for brain swelling, I remember how this medication affected me and my attitude.  I definitely don't like the way that it makes me feel - hungry, nervous, anxious, jittery, sortof loopy and drunk and definitely NOT myself! 

Last Tuesday I was able to have the gamma knife radiation down in Detroit.  They were able to map out all 6 tumors and do the radiation in one day - they thought that they wouldn't be able to do all in one day.  When they came to say that they were ready to start the radiation, they told us that it was probably going to be about 3 hours of radiation (which is a long time).  It actually took over 5 hours.  I was very glad to be done but also very grateful that I didn't have to go back the following day for another round.  After getting out of the hospital, I went back to the hotel and slept. 

We ended up coming part way home on Wednesday and the rest of the way on Thursday.  This weekend I spent quite a bit of time resting - between the medication and fatigue from the procedure, it was well needed.

I thought I would share a couple of the pictures that Kurt took with the halo on - a little different than the one that was put on in Marquette. 

This was the halo that was put on for gamma knife radiation at Karmanos Cancer Center/Harper Hospital in Detroit on November 1, 2011.  (They did radiation on a total of 6 brain lesions that day - a total of 5 hours of radiation!) 
Makes me think of the SAW movies!!!!

Trying to get a little siesta in the resource room by the radiation unit at Karmanos / Harper Hospital.

Today (Monday, November 7th), we met with my oncologist here at Marquette.  She has consulted with the oncologist (who specializes in melanoma and was part of the clinical trial) down in Detroit regarding the next options.  It was decided that since the Ipi treatment obviously did work on both my liver and hip tumors, they didn't want to start the new treatment without seeing if the Ipi would continue to work on the brain lesions and the liver/hip.  So, basically, we are going to wait 6 weeks for another MRI/PET scan to see how things are at that point.  If the tumors are the same size or smaller, we will continue with Ipi treatments.  If I have new tumors/enlarged tumors, I will start that new FDA approved drug.  I also talked to the oncologist about the swelling medication and how it is making me feel.  I am going to wean off of it over the next 10 days; I just need to make sure that I am not having headaches, vision changes, etc.

It is a bit scary to me that we will now wait 6 weeks but I feel we need to give Ipi some more time.  If we started the new medication, we would never know how I truly would react with the Ipi.

I will blog more again soon!  Thank you for your thoughts, prayers and love!  I believe....

Missing My Kids and Small Town Hospital Life - 11/1/2011

I'm typing this on my iPhone so sorry if there's lots of mistakes.

We left on Sunday and made it to Auburn Hills. Had a little time to shop, relax, etc before we left on Monday for Detroit. We got to Karmanos, met with the nurse practioner who informed me that indeed, the neurosurgeon's wife had given birth the night before. We spent about 3 1/2 hours in the hospital while they figured whether they could schedule the day(s) and then there was some insurance issues. We left thinking we would be back here at 6 am today for round one of radiation. Karmanos is a great place but it definitely made me miss ole MGH and the sort of simplicity there.

We were able to get out and enjoy GreekTown for awhile last night! We both were really missing the kids and trick or treating with them! They were well taken care of though and thats most important! I don't think either of us slept well last night - mine was anticipating as well as hearing city noises. I'm sure tonight I will get some sleep!

This morning I did get the halo on. They are currently mapping the radiation. This part of the process takes some time - it's got to be precise! They think they will have to do another round tomorrow since the tumors are in a few Places. (I'm hoping that by some act of God, they will be able to do it all today but if I need to do it again tomorrow, I will!).

Right now Kurt and I are in a waiting room just relaxing and trying to nap a bit; after all, the tv and computer don't work. Luckily, I am still able to get some phone reception.

I will post more once I know what's going on! Thank you for your thoughts, prayers and love!
Jodi