Gone Today/Hair Tomorrow & Mask Burning - 04/21/2012

Today was the start of a new "adventure" on  my part.  We went to Super One in Negaunee for groceries and I completely forgot a hat.  When I got out of the car, I asked Ashley what I forgot and she said, "A hat!".  So, we walked in together (she held my hand - I think it may have been for my "mommy support" from her).  The trip was uneventful and I didn't really give it much thought.  When we got home, Kurt told me how proud he was of me! 

I will have to try to get some pictures of my hair.  It's pretty funny because all of a sudden it has come out on the sides and most of the back of my head.  The top is a little fuzzy but not much growth.  (However, I do make up for hair growth on my cheeks and chin - UGH .... hoping that if I leave it alone, when I can get off these meds that will go away again as well!)

Tonight Ashley played in a basketball game and I decided not to wear my hat again.  I guess it's time to just be who I am and not worry about it.  My biggest fear/worry is that it will affect my kids.  I don't want them to feel funny about it all so when I got there, I went up to Ashley and asked her if she would rather I go and get my hat.  She said, "No!"  (If I had to guess, I think she's just as proud of me as her dad today!)

And, last....

When we got home, Kurt decided that he was going to start a fire to burn some of the brush we had from taking trees down last weekend.  My mom, dad, aunt and uncle were here as well so I said, "How about I burn the radiation mask?!"  (Someone had suggested to burn the mask as that is what some people did after having radiation and got their masks; they would have a mask burning party to get rid of the mask - after all, what do you really want it for?)  So, I got out the mask and we burned it in our fire pit!!  (Lots of pictures below...)

One last picture of the radiation mask used for full brain radiation in November/December 2011

I'm standing in front of the fire with the mask

A closer picture of me with the mask

Dropping the mask in the fire pit

Here it goes!

This picture symbolizes SO much - I love it!

Almost gone

The last of the mask before it was gone!  YIPPEE!!!

AND, it's gone!!!!!!!

News Keeps Getting Better and Better - 04/16/2012

It's been awhile since I've blogged... mostly because there is not much going on.  Well, there has been a few things going on like having an MRI last Tuesday and Kurt returning to work last Monday.  He took today off to go to my oncology appointment with me. 

My doctor came in and said "Good news!"  She let us know that the MRI showed no new brain tumors and the tumors that were there have gotten smaller.  I cannot say for sure how many tumors there are because as she told us, depending on which radiologist reads and reports, they might report it differently.  So, the plan for now is to stay on Temodar chemo pills (starts again tonight) and see her again in a month.  I won't have a PET scan until June and MRI probably 3 months from now.

I had a long list of questions:

- GOING BACK TO WORK:  If I am feeling well enough to, she is fine with me going back to work.  I am going to talk to my boss about going back. 

- DRIVING:  I asked about when I could drive again.  It's getting harder and harder for me as I want to go places.... but she informed me that she would say that I shouldn't plan to drive again unless it's an emergency.  She said that while they say 6 months seizure free, they don't know what is happening with my brain and I could have a seizure at any time.  While I am quite bummed about it, I do understand!

- LIFTING:  Funny how I was told I couldn't lift when I had my surgery last May and never really did ask if I could lift so today I asked if there were any restrictions.  The doctor just said that I need to not lift heavy stuff with my left side as I have the mediport in that side of my chest.

- STEROID MEDICATION:  I was hoping to ween off the steroid medication I'm on as I notice some arm/leg twitching, gaining weight/retaining water (UGH) and wanting to eat constantly, being irritable most of the time, etc.  Because I am on a low dose, she would like me to stay on it.

I'm thankful for everyone's support and I continue to think about all of those that I know who have been affected by this horrible disease and are fighting.  (If there is ANYTHING that I can do to help, please let me know!)  I believe!

It's a Beautiful Day - 3/19/2012

I heard this song on the Today show this morning which I have now been singing all day! 

I had my oncology appointment this morning and then went out for lunch with my mother-in-law, Kay!  The appointment was full of good news.  First, I will be starting the temodar treatments again tonight for the next five nights.  Second, I got my results of my PET scan which was last week.  The PET scan will show tumors in my body - previously showing us the tumors in my hip as well as my liver.  (It does not, however, show brain tumors - that is done only by an MRI.)  The results were again GREAT... my tumor in my liver is gone and my hip tumor is still healing.  I had radiation as well as the Ipi treatments which they figure are still working on my hip.  Good news! 

I am very anxious to get back to work so I asked my oncologist when I could have another MRI.  Since my last one was at the end of January, I will have another in the middle of April.  (While I continue to BELIEVE that I will get good news on brain tumors from my next MRI, I figure it would be best to get my results of that and know that everything is okay with the brain before going back to work and then have them say that I need further treatment, etc.)  So, hopefully within the next month, I might be able to go back to work!

Thank you for your continued thoughts and prayers!  I believe!!!!  (I wonder if I should start singing "I believe in miracles...")

Updates / Thoughts and Prayers for Others - 3/12/2012

I haven't had much going on personally so I haven't really updated much.  I've received LOTS of inbox messages asking how I am doing since I haven't put anything on my blog or facebook lately so I thought I would put an update.  Things have been pretty uneventful for me but I have, however, been praying for LOTS of people lately as it seems that there are a lot of people that have recently gotten bad health news. 

First, I'd like to say "Rest in Peace, Carl Wolf".  Carl is the person that I saw at the beginning of my newest journey who, years previously, was given @3-6 months to live with pancreatic cancer.  He found out about his cancer at about the same time that I found out of my original melanoma almost 9 years ago.  While he did not have an easy battle with cancer, I hope to have half of the fight in me to be around to see my children grow up, make lots of memories with my husband/children/family/friends/etc.

Thoughts and prayers out to MANY people and their families including (and I am sure I am forgetting people - sorry) who have recently diagnosed or have been fighting this nasty battle:  Kathy Blake, Sherry Garwood, Jane Johnson, Carrie Zenti.  I'm sorry if I forgot anyone! 

As for myself, I am having another PET scan on Wednesday, blood work on Friday and Monday will get the results of the scan and blood work and hopefully start my third month of chemo pills that night.  Things have been relatively uneventful but the chemo treatment does definitely make me tired by the end of the week.  I'm hoping that after these next rounds of medications and results from my next PET scan/MRI results to be able to go back to work (and Kurt to go back to work as well).  I don't yet know when I will have my next MRI so I haven't talked to work yet.  I figure that I will wait for the results as I don't want to start back and have to stop if the results have changed.  Don't get me wrong, I've been feeling good and I believe!!!!

More information/results after my oncology appointment on Monday!  Thank you for your continued thoughts/prayers/etc.

Jodi

Relatively Uneventful Update - 02/24/2012

I thought I would type a quick update on my blog since some people do not read my posts on Facebook but rather on here.  Not much has been happening really.  This week I started my second round of Temodar, the chemo brain drug.  This time I have done fairly well with it - making sure to take the nausea medicine.  Last night (Thursday), I did get nauseous and sick once but that wasn't too bad. 

Today I had an appointment with the oncologist.  Everything is looking good.  My bilirubin was a little high so they will be watching that before I start my 3rd Temodar treatment in March.  They also gave me a bag of fluids as I was probably a little dehydrated.  (I didn't realize that can also make you feel nauseous.)  I will have a PET scan in early March and will get the results at my next appointment with my oncologist.  My next MRI will not be until the end of March/beginning of April.

Other than being VERY tired lately, I am doing good.  I have nights of good sleep and more nights of not so good sleep where I am up for a couple of hours in the middle of the night.  I take a lot of morning/afternoon naps lately!

Hope tonight is an uneventful fifth (and last) day of meds for this month! 

I believe!
Jodi

Believing in Miracles - Am I In a Dream World Today? - 02/06/2012

I had an appointment with my oncologist this afternoon.  I don't know if this blog is going to make a whole lot of sense as both Kurt and I are kindof in shock so I will try to do the best that I can.  I'll give a little history and such with all that has been happening since my last MRI plus news today - hope it makes sense.

In November before we went to Florida, I had a STAT MRI on Wednesday before Thanksgiving due to some seizure activity I was having.  We were told that I had 8 brain tumors.  Once we returned, I began full brain radiation which ended right before the New Year.  In January I had a PET scan which showed that both my hip and liver tumors are still decreasing in size.

Move to January 23rd when I started Temodar, the brain tumor chemo pill.  This is the one that is taken 5 days on and 24 days off.  I took the 5 days of pills (of which I was vomiting the first night and didn't have any other problems the rest of the week from it because I started taking anti-nausea meds with it at night).  Beginning @ Wednesday that week, I started having some other problems.  I believe some of it was related to getting dehydrated, having thrush and not wanting to eat/drink, etc.  On Saturday morning Kurt called the ambulance to take me to MGH.  I had a CAT scan which showed that I had brain swelling.  I was in the hospital for a few days and was put back on brain swelling medications amongst many other things.  I started to feel a little better each day and was discharged for my oncology appointment that Monday.

The oncologist decided that day to start me on the new BRAF medication since it appeared that there was issues continuing with my brain.  On Tuesday last week I had another MRI.  I started the new medication yesterday (4 pills, 2 times per day) and took it again this morning.  When we met with the oncologist today, she started reading the MRI reports for both last Tuesday as well as in November.  Of the 8 tumors that were shown in the MRI report in November, she wrote down 4 of them that are still there.  When thinking about it afterwards, we realized she actually wrote down that one was GONE so there are only 3 tumors still there.  These are the same tumors that were there in November.  Of those 3 tumors, they have all gone down in size.  The pituatary tumor that they had talked was very uncommon to have is not there as well.  We asked how the tumors shrunk and she indicated it had to have been from either the gamma knife radiation in Detroit in November or the full brain radiation in Marquette in December.  She said she would contact the radiologist that wrote the reports to vary the information but said that she is an excellent radiologist so thought the reports were correct.  The oncologist decided that I should stop the BRAF medications (this is what she would like to use as a last option if possible) and go back to taking the Temador on February 20th. 

(I know it probably is as confusing to all of you as us... but we are BLESSED to have some GREAT news after lots of not so great news!)

So, why was the news so grim when I was in hospitalized ... I was having some sort of brain problems, obviously!  The oncologist said that it had to do with brain swelling and activity so we will be tweeking some medications they put me on so that I hopefully will not continue to have problems. 

It's a GREAT day... and, I BELIEVE!

A Weekend Ambulance Ride, A Trip to the ER, A Few Overnights at the Hospital & A Visit with My Oncologist - 1/30/2012

I'm typing this a day later than what I should have started it.  It all begins with me starting the Temodar medication that I started last Monday night (two pills in the evenings of each day) and ended on Friday evening.  I started with my first dosage and had a very rough late evening / early morning on Monday - got very nauseous, took some nausea medicine with water and then proceeded to vomit a few times.  Tuesday-Thursday I felt a little better ... took nausea meds about 1-2 hours before taking the medicines all four of the additional days.  I slept for about 2 1/2 days - I didn't have any ideas what was really going on.

Skip ahead to Saturday morning.  Kurt contacted the ambulance to bring me to the Marquette Emergency Room.  I seriously thought it was Wednesday - I skipped MANY days.  The ambulance got to our house @ 10 a.m.  The paramedics/EMS staff brought the stretcher in, got me connected and I started  getting the dry heaves in our house.  They finally got me out in the ambulance, got an IV started and we were on the way to  the  hospital.

Once at the hospital, I wanted water as I was really dehydrated but they couldn't give me that right away.  The doctor finally gave me water.  He ordered a CAT scan.  I'm not sure what time it was but the doctor told me that I could either go home if I ate lunch/dinner or I would get brought up to the 6th floor for a day or more.  I wasn't all that interested in eating yet so they did request a room for me on the 6th floor.  Once I was up on that floor, I did eat a bit more and drink a little bit.

I progressed a little each day.  On Sunday, I took a shower which felt good.  My cousin and I took a walk down the hallway and back to my room.  More tests were done - lots of blood work, blood sugar checks and insulin shots, different drugs were added/changed, continual monitoring via IVs, etc.  There was a lot going on that I quite cannot remember what they were doing fully.  We did get discharged on Monday by 9 a.m. so that I could then go to the appointment with my oncologist.

She was aware of all that was going on this weekend and she had all of the paperwork from all of the tests.  After discussing everything that we went through, it sounds like she thinks I was getting sick from seizure activity and not the new temodar drug.  She suggests that I start the new BRAF inhibitor drug (zelboraf) - medication to take each day, twice a day.  She also wanted a MRI done as soon as possible so we can see what the results from the prior MRI looks like now. 

The MRI was done today, Tuesday, at 9:45.  We won't have information on this until our next appointment with my oncologist, which is next Monday afternoon.  Also, after a search for a pharmacy with the new medication, Kurt had to work with the oncology office to try to figure out a place locally to get the medications.  He thinks he will be able to get it by this weekend.

I was less than coherent and now reading some of the things I said, I am sorry!  I definitely didn't know what I was doing or saying!  I'm glad to be home and glad to be getting better (and trying harder to make more sense)! 

Thank you to everyone for your htoughts, prayers, concerns, love, etc!!!!

I have lots of wonderful friends and family!

I believe!

Love, Jodi