3rd Craniotomy - 12/19/12

It's good to be home... I knew I'd get a good rest if I was home!  :). They had a hard time finding somewhere to put an IV in the one arm they always have in the OR so I'm really bruised ;)  Ive gotta decide by Friday if I want to have my 2nd brain port surgery on Wednesday or if I want to wait - probably will do it and be done!  The neurosurgeon came in this morning and told me that he took something out and sent it for special staining - he doesn't think it was a tumor after all; he said he thinks it was necrosis from radiation.  Instant relieve! ;).  I'm sure he'll let us know as as soon as he finds out.  

I can see that he is watching out for me and my family such is always nice to have someone to back you up!  Got to meet a lady who lives in Gwinn next to my moms friend and works in the OR.  

Saw my 'friends' in MRI twice!  

Lots of bruising, left Side of head full staples, and ready for bed.

Shaved Head :) - 12/18/12

I thought I would quickly blog to thank everyone for their thoughts and prayers as I embark on my 4th craniotomy surgery tomorrow!  We will be at the hospital at 6:15 a.m.  My children have decided that they would like to come with on this day so they will be out of school.  I am not yet sure when they expect to do the 2nd brain port surgery - it sounds like it will be in a couple of weeks.

Kurt took the shaver to my hair tonight as I know they are going to shave my hair off anyway.  I figure why go in with hair when you know you are going to lose it anyway - didn't want to come home with half a head of hair.  :)

Here's the before/after pictures that my daughter, Ashley, took:

Dark/gray hair which stuck up - Kurt is behind me; he is going to shave my hair off
as I will lose  it where they perform the surgery anyway!  

Shaved head - ready for surgery - OMG... look at that belly and swollen cheeks!  (All due to medication... well mostly!  It's a reality how much weight I have gained because of the meds!)

I will have Kurt update the blog with my surgery status until I am home and feeling up to it.

(I also wanted to say thank you to all who sent gifts with 'believe' and 'miracles happen' on them - LOVE THEM ALL!!!!  Okay, most everything says that but even if it didn't, thank you!!!)

Happy Holidays to Everyone!

Tears of Gratefulness, Love & Believing - 12/12/12

Wow... I didn't realize how LONG ago it was that I last blogged until I just got on here now!  (Sorry... life has been a bit on the hectic/busy side)

First, I must say I found this week I've been VERY emotional.  I've been shedding lots of tears (mostly about things I am grateful for).  It's hard to explain how I'm thankful for everyone from the people that send me a note/email/card to the people I saw in the medical center that saw my brain surgery news and asked if I was the one that was 'the star' about the surgery, to my doctors and their staff and all that they have done for me and my family, to my friends and co-workers, to my family and friends who have remained by our side through all of this, and of course, even people I don't know ... THANK YOU!!!!!  I think I tend to tell everyone thank you but it just doesn't always happen.

So... where do I begin?  I will start with what has been going on because A LOT has happened (and changes are constant).  I found out from my last MRI that I had 4 tumors they were watching (there are more than the 4 but those are the ones that they are concentrating on) - 2 had decreased in size and 2 had increased in size.  As of last week, Kurt and I met with my oncologist who then spoke with radiation oncologist and he said that there were two tumors they were going to radiate but that because my brain is SO swollen around them, they would have to target the areas with less radiation and it was a 50/50 shot that it would work for me (I had issues and had to stop the last time I had radiation - it was doing more harm than good for the areas).  So, I had my mask fitted last week and they were supposed to call me this week with my schedule to start radiation - they planned on doing 10 smaller sessions on those two tumors.  

Well... forward to Monday - Kurt calls me at work and asks me to call the neurosurgeon's office as they had called to see if we could schedule an appointment on Tuesday to review my MRI results.  So, we met with them before my oncology appointment on Tuesday morning (12/11).  The neurosurgeon reviewed my MRI with the radiation oncologist and after discussion with the neurosurgeon, it sounded like they thought I would be better off to have a craniotomy on the original tumor area (the area where I had my first surgery on the left side) and then an additional brain port surgery later to help relieve the swelling and take the tumors out.   So, we scheduled my surgery for next Wednesday (12/19/2012) for the left side craniotomy with hopes that it will relieve some of the brain swelling and I will eventually be able to decrease the meds that I am currently on.  It will take approximately 6-8 weeks to 'heal' and then we will discuss the next surgery... the brain port surgery.  I will have Kurt update my blog after the surgery.  

Kurt and I then went to my oncology appointment on Tuesday morning.  The oncologist did not know the latest developments about my upcoming surgeries.  She seemed to think this was a good option.  And, I will continue after surgery with the chemo drugs that I currently take.  At one of the last appointments that I saw the oncologist, she indicated that I should start 'squatting' as I have had issues with leg muscles from both meds and the hip/femur surgery.  Now that I appear to be healing well from the surgery on my hip/femur, she suggests doing squats as the meds I am on deteriorate your muscle mass.  It appears that I am getting around better than before - even though I am far from normal in this area!

I must say that I have a different perspective on life now!  I've learned of SO many people I know who are fighting the battle of 'cancer' or lost their battle; it stinks!  But honestly, I try to remain positive and optimistic about life because none of us know when our last day will be here.  Kurt and I have discussed forming a non-profit business to try to raise funds to help people going through not only for cancer.  We are in the beginning process of this and I will update as we start the process more.  We do have our financial person on board, we need to get a name and then start our plans.  We do have some ideas but still need to do more (probably after the holidays)!  We are always up for suggestions/ideas, so please feel free to contact us at our email of ballz49866@gmail.com.  People have been SO generous to us that we want 'to pay it forward' and help others.

Last (for now) as this is turning into a book...  I must say how grateful I am to my family/close friends.  They tend to see the worst in me (especially Kurt - SORRY KURT)!!!!  My cousin, Laurie, says it best that while she knows that I am sick, she doesn't look at me like I am sick.  I want to put that this is what I've been crying about the most lately - that my family/friends will not know how much they all mean to me if something happens.  I try to not think about the end as I have a lot of fight in me and when I was originally told I had 6-9 months to live (this was in 2011), I thought "I will do ANYTHING to fight to live".  Sometimes its hard as I have a 12 year old son and a 9 year old daughter who handle all of this very differently.  Ashley wants very much to be a part of everything medically and she is such a great caretaker.  While I think Nathan understands, he just doesn't want to have any part in it - I think he knows what is going on deep down inside but he doesn't dwell on it.  I hope they both know how much I love them and I'm grateful to have them in my life (I'm the lucky one to be a mom to such wonderful children).  I got a beautiful letter from Nathan today saying how I've been a positive influence in his life - of course, it made me tear up!

And, then of course, there is Kurt.  I don't know how I would handle all of this from his side - I can't imagine ... I have the most amazing parents, brother, nieces and nephew, inlaws, grandmas, aunts and uncles, cousins!  I'm grateful to the team of doctors / staff who I can truly see are looking out for what is in my best interest!

Sorry for the 'book' and THANK YOU TO ALL WHO CONTINUE TO BELIEVE WITH ME!!!!

Love you all!

Jodi

Ashley's "BELIEVE" Henna Tattoo - 11/10/12?

I talked about Ashley's henna tattoo she got from the U.P. P!nk Power benefit at the Throttle on Saturday (I believe it was 11/10/12 but I don't have it on my calendar...)

Nice art work, Mike Talo!!!   Here is a picture of it:

Unbelievable - 11/13/2012

I saw my oncologist this morning.  I had to go and get blood work and an EKG - apparently with the chemo meds that I take can affect my heart so they are watching that closely.  So I'm going in every two weeks for an EKG...

She did tell us that my PET scan shows no 'hot spots' in my left hip (that's gone), tumors of the right hip and liver are decreased again!

We heard yesterday that the interview that I did with TV6 was going to air today.  I wasn't sure exactly how it would sound ... was a little worried about looking stupid BUT honestly I have to laugh at how swollen I am, how my hair looks.  It was nice to see my doctor and the doctor that trained him - I owe them so much - along with their staff and ALL my doctors and staff that have helped!!!

I'm trying to upload the TV6 news; here is the link that you can see the TV6 news broadcast:  http://www.uppermichiganssource.com/news/story.aspx?id=813664#.UKRcyYdTznF)

I blogged on the above part on 11/13 but wasn't sure how it sounded and I have honestly been too busy with work and life that I didn't look at it until now (Sunday, 11/18).  I'm going in for a trim to my hair on Tuesday (11/20) with Casey.  I've been extremely tired this weekend.  I think this week I will cut back on my hours at work and rest - we are off Thursday and Friday.  I don't want to overdo it!  (I went in the shower today at my mom's house, washed my hair and noticed some of it was coming out... not sure if I am going to lose it from the chemo or it is just thinning in the area where I had brain radiation.)

In fact, Kurt has suggested that I go to bed now (7:47 p.m.) and get a good nights rest.  :)  I talked to my mom and I said I didn't really do anything in particular this weekend and she said, "It takes a lot out of you to get in and out of the car." so I said, I never really thought of it that way ... I want to be able to do things like normal life - but it doesn't come that easy any more.  Not sure if it is from the meds that I am on?!?

Good night!  And, I continue to believe.  

(Speaking of 'believe'....  We went to the U.P. P!nk Power benefit at the Throttle in Little Lake on Saturday and my co-worker's fiance, Mike Salo was doing henna tattoos.  He did one for Ashley that said "Believe" and the "L" was a cancer ribbon.  I will post that the next time.  It turned out REALLY beautiful!)

Can You See What I See? (Or... It's More Can I See What You See?) - 11/3/2012

I was at work on Thursday, November 1st and about 12 noon my vision started to become goofy.  The best way I could describe it is that I could not see up or down (peripheral vision was affected) and I "clouds" in my overall vision.  While I felt good overall, I called Kurt and asked him to come and get me.  He asked me what time I wanted him to come and I said, "Preferably now," and then told him what was happening.  He said he would come and get me to take me to the ER.  I was fine with that so he knew I was worried.  While I waited for him, I heated up my french onion soup and sat eating in the front reception area waiting for him.

We went to the ER and, of course, I got to say hi to A LOT of doctors and PAs that I've gotten to know.  My parent's neighbor, who happens to be an ER doctor, as well the doctor that came in to see me (his last name clued me in to ask if he was related to a girl I work with... and it's his daughter - SMALL world as I didn't know her dad was a doctor).  I also saw two of the PAs from my neurosurgeon's office.  So, by the time I left the ER my vision appeared to be normal.

After testing my vision, they determined that I needed an MRI.  So, I went down to have that (and, of course, know them VERY well).  Once we got up, the PAs reviewed my MRI from that day compared to the MRI from October 8th.  It was determined that all but one of my tumors has shrunk - not sure how much but that must mean that the chemo drug that I have been on for about 5 weeks is working.  The only issues are that one of my tumors hemorrhaged and that two of my fingers on my left hand had been 'twitching' for a few days.  So, they increased my decadron meds (which is for brain swelling or in this case the hemorrhage) and increased my Keppra (which is for seizures - which they wonder if my fingers are twitching because of seizures?).  They also wanted me to schedule an appointment with an eye doctor on Friday to have a visual field test (which was what I had done before/after my brain port surgery).

So, Friday I went to have an eye exam and the visual field exam.  The eye doctor kept asking me if I had any headaches (which I didn't); he thought it could be from migraines.  From my exam, he thought that my optic nerve in my left eye was pale but he thought that it was probably like that for awhile (caused by radiation to my brain).  The visual field exam was inconclusive as I was supposed to keep looking at the dot in the machine and I kept looking at the little lights.  So... I have to have that test again in a month.

I had some questions regarding what we were told about my MRI so I called my neurosurgeon's nurse and asked.  The hemorrhage shouldn't need surgery; I was told to have another MRI in about 8 weeks.

I have been complaining for weeks that my eyes seem to be puffy and I wake up with wet eyes.  (I'm told that this is more than likely from my decadron medication... much as it makes me swell up, the things it helps control make it worth it for the few side effects).

So, basically say a prayer for Kurt and the rest of the people who are around me - because he says this med (and especially an increase in it) does make me A LOT bitchy.

This week I go for my next PET scan to see how the chemo meds are working.  (I found out only how they worked against the brain tumors from the MRI - here's hoping they continue to work with the hip/liver tumors and there are NO new tumors.)  I won't find out until the following week when I see my oncologist but I will keep praying and believing!  :)

Thanks for believing and the thoughts/prayers!!!!  :)

Update from the Oncologist Appt - 10/16/2012

I met with my oncologist today.  I had started on my chemo meds a week ago on Sunday (taking 4 pills, twice daily - every day.)  She asked how I was feeling; I feel much better now - starting to get energy back; in fact, I think there was two days of sleeping in and no napping.  I also felt like I was getting my ideas/points across - that was an issue for me; I'd know what I would want to say but couldn't get it out.  I asked Kurt how he felt that I was.  He said that he thought things had gotten better.  (I even asked my mom after my appointment and she said she thought since last Thursday she could see improvement.)  This seemed like a positive with the oncologist - she said that the new meds react very quickly - which is a great sign!  Kurt asked how long people typically take these pills and she said they take them until they no longer respond which on average is about 6 months.  Then it sounds like I could start Ipi again; Kurt asked if I could do both at the same time and she indicated that it was currently in clinical trials.

I will have a PET scan in @2-3 weeks and another MRI in @8 weeks.  I will see the oncologist in 4 weeks unless I am having any complications. 

Last Thursday I met with the TV6 news for an interview on my last brain surgery.  She told me she would contact me when they were going to air the story... I haven't heard from her yet but see that they posted an article about the news story on their website at http://www.uppermichiganssource.com/news/story.aspx?id=813664&fb_source=message#.UH2fmlHQjd0

   (It didn't air on the 6 p.m. or 7 p.m. news tonight... maybe 11 p.m. or tomorrow?!?!?)

I continue to believe....